ALL for Ally

Update

2012-01-13T08:18:00.001-05:00

2012. A whole new year and a brand new clean slate. While most people are grumbling about the cold and snow (which I love) and healthy eating and everything else that typically goes along with the month of January....I am sitting in my comfy chair and warm house enjoying the month. I actually love January! December gets so hectic and busy and but in January there is not much else to do so I get to REST.

For our family, I am pretty much thinking that is is our new normal. I know that chemo ended three months ago...but then we had all that celebrating concerning that. And then the holidays. And then the port came out and it just didn't quite seem like our former lives. But now it does. A new normal indeed. Still plagued with chemo side effects (not sleeping...belly pain....still present) and still punctuated everyday with prayers sent up that our girl's leukemia will never come back. And still learning how to live without my Mom. You would think I would have it by now, but I don't. But this is normal now.

Four years ago, in January, we found out about Mom's cancer. My sister reminded me the other day how I had that sinking feeling when I put my Christmas decorations away that year. I knew. I just did. We spent much of the month in surgeries and driving back and forth to the Cleveland Clinic. I realize how long it has been that we have been battling cancer when I remember that Carly was a little baby then. Only six months old. And now I am starting to look into where to send my baby girl to Kindergarten. Although much is lost, there is noone more grateful than me and my little family. So grateful to start a new year now. So grateful to have finally taken off my LIVESTRONG bracelet because I finally said..."we are no longer battling cancer" (Ally's Army bracelet...not sure I can ever take that off)

So here is to hoping that 2012 is a good year. I love having a little extra time to watch a TV show or look at things online or even clean out a drawer if I want to. I really and truly have not had time to do these things for a very long time.

Ally is doing good with her arm. She is getting used to it and it is completely covered with signatures from all her friends and Army. We go back on the 24th to see if it is healed and if she can get the itchy cast off. One more thing to add to her list of "I have done that"

She brought home some artwork she did at school. They had to design something around their name...like a biography of their life. It was quite interesting to see hers...especially next to other kids who have things like soccer, basketball, or friends defining their life. No...here is Ally's: Livestrong, Hope, Faith, Ally's Army, truth, and relentless covering much of her design.

But our old neighbors and friends, who moved on to be the Bball coach at Clemson...well they will be happy to know that they earned a big spot on her design. Go Tigers.

Ally's artwork.

Happy, HAPPY, 2012 and may everyone be blessed with health this year!

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Oh No!

2012-01-05T21:24:00.001-05:00

YES. 'Tis True. Just 5 days after her surgery, she was just starting to feel like she could move again. She has been pretty faithfully "working out"....which she does to try to get her strength back . She still suffers from horrible ankle pain. Anyway, she was bouncing on top of one of those large exercise balls. Her brother was right next to her bouncing way too high on his exercise ball. Next thing we knew, he had kicked her ball out from under her and she was flying backwards only to catch herself with her arms. She immediately started screaming and crying. Jerad and I were both right there and saw it happen. And I immediately felt a pit in my stomach. We always worry about her breaking a bone doing something. 28 months of steroids has made her bones very weak and brittle. We knew that. We iced her arm immediately and wrapped it in an ace bandage all night. We didn't take her in....figuring orthopedic would be closed (it was evening) and we would have to wait anyway. She could move it also, which made us feel better.

Fast forward to the next morning. She had been up several times during the night in pain and it wasn't get any better. I called her old pediatrician figuring this was a "non cancer" related issue. And they couldn't get her in with him that day. UGH. Seriously. (Who does this when you say your child broke her arm?) So I called down to Dr B and he just ordered up an x-ray taking my word for it. Less than an hour later we knew she had fractured her arm. About 3-4 inches above her hand, and luckily the break was also above the growth plate which can be tricky. She knew right away that she was choosing an orange cast for Ally's Army! The cast will be on 3-4 weeks. The radiologist did let us know that her bones are especially weak and thin and he wanted her to keep drinking her milk and also continue exercising. The only thing that can help her bones build back up. We did have to pull her out of the basketball league that was due to start Saturday. She was disappointed, but we kinda took this as a sign that she wasn't ready anyway. And it's pretty hard to play piano with a hand in the cast too. But she is gonna keep doing modified Taekwondo.

To us a broken arm is no big deal . We can handle it. After everything we have been through, this is small potatoes. There is one annoying part...We don't mention this part....but Ally pretty much never sleeps all night. Maybe once a week she sleeps through the night. It is like having a baby. She has insomnia a lot (also from the steroids...HATE those) and she repeatedly gets up and then wakes her Dad up to "help her get back to sleep." We had almost reached the end of our rope with this...because we can't really help her sleep anyway. It is so frustrating that there are so many things we just can't fix. Just one more aspect of childhood cancer that I hate. So now to add salt to our wounds....last night I think she was up six times. Itchy cast!!! And of course she woke her Dad to try to stick stuff down the cast and scratch her arm. Holy cow.

So here's hoping to more sleep! And a healed arm.

Surgery Day

2011-12-28T19:47:00.001-05:00

Happy New Year 2012! I would now like to get up on my rooftop and scream this for all the world to hear. We got the results from her bone marrow test:

No evidence of leukemia. No evidence of relapse.

I repeat: No evidence of leukemia. No evidence of relapse.

Here she is right before she went into surgery. You will see Bobo. She also has her little bird porty. This the bird she picked out at the gift shop about an hour before her port went in. I remember feeling so so so so bad for her. I pretty much told her she could buy the whole store. She picked out this little bird and named him Porty. Right after they put the port in, Porty would sit right under her shirt and protect her from any bumps or whatever. She was so sensitive about that port. She even slept with Porty in her shirt.

And then sweet Miss Vicki brought her the lucky ladybug to wish her luck with the bone marrow test. And it worked!

Here she is after. A little puffy and groggy, but I am telling you the girl was a trooper. The same girl who threw a giant tantrum over her flu shot never cried a single tear all the day at the hospital.

Here is the incision. About three inches. They also did the bone marrow in her hip bone. Those steri strips hold her together until it heals and then they fall right off.

And here she is resting (with Bobo). My sweet little girl I could not resist taking this picture.

And this is her actual port! She asked if she could bring it home and her surgeon let us! He even cleaned it all up for us. It laid underneath her skin so we could never see it. But the nurses would access her right in the blue spot in the middle. The chemo would then travel down that white tube which went right down an artery into her heart. Then the blood would pump out of her heart and distribute the chemo or meds throughout her body. What an amazing invention and one that saved my daughter's life. I am not sure what I should do with this now, but I am glad that we have it.

The news was awesome to hear. I waited on hold for about 10 minutes the next day to hear the results. I could almost not breathe because I was so nervous and anxious to hear the news. I know this does not mean she is "cured" by their definition. We can't get to that point until five years out. But it is a giant victory to us to go three whole months without chemo and still be cancer free. They will continue to check her blood counts every single month. For the first time in almost three years her hemoglobin was high (normal is 11-14 and she was 14.9.....she was 4 when diagnosed)

Another dear friend said to me.....do you know that this is the first time in four years that you are not actively fighting cancer??? Wow...I had not even thought of that!!! Four years is a long time. Especially when it is your mother and your daughter. I will take this new life. Bring on 2012 and a normal life for my family of five.

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Port Removal Surgery Dec 28

2011-12-27T15:39:00.005-05:00

I wanted to take this opportunity to say Merry Christmas to all our followers in the blogosphere. 2011 proved be a much better Christmas for our family. We continue to be very aware of all those still fighting the disease and will never forget our Christmas in the hospital two years ago. These memories continue to define who we are and make us very grateful for being in the place we are in now. I thought I would share the Christmas card we sent out this year.

We have a very big (HUGE) day coming up tomorrow. Ally is scheduled to go into surgery to have her port removed! This port has resided in her chest for 2 years and 7 months! A lot of kids end up having two or three ports due to infections, but her trusty port ended up lasting the entire time. So tomorrow is the big day...Dr Christian, who put her port in and is a fellow board member with Jerad, will take her port out at 12:30pm. At the same time, while she is asleep, Dr Broxson will come into the OR and do a bone marrow aspiration on Ally's hip. He injects a large hollow needle into her hip bone and pulls some marrow out . This marrow is then tested for any trace of leukemic cells. I am thankful they are doing it while she is asleep because it hurts! I am more concerned about this part of it than the actual surgery part. Her marrow has not been tested in about 2 years. I am not sure if we will find out any results tomorrow or if we will have to wait. Please say a special prayer for her and I will post the results ASAP. All along, this has been in my mind as the end of her journey. I know it is not really the end with all of the follow ups etc. The poor girl still suffers every day from side effects such as weak and painful ankles and feet and insomnia, but after all we have been through we just have to learn to live with it. Every headache, belly ache, and pain still cause us heightened alarm. But if her marrow tests out good tomorrow I do think it will be a huge sense of relief for Jerad and I. (She is, of course, not nervous at all...and she says it. I even told her she has to get an IV, because they can't use the port they are taking out, and she just says "OK") We are not allowed to be with her tomorrow, but she is allowed to take her Bobo. She will be in good hands though.

One more time...my brave Ally girl....one more big thing. And then you will be well on your way to being the "normal kid" you so desire to be.

It's beginning to look a lot like.....

2011-12-12T22:18:00.000-05:00

CHRISTMAS!

Visit with Santa 2011

We are pretty excited about Christmas coming this year. The last few Christmases we kinda "got by" so we are trying to really go with it this year! I am trying to be extra prepared, but even so I still feel behind. My blog has suffered as a result! I love looking at this picture with Santa. For one, this is the first time that Carly ever sat on Santa's lap without screaming her head off. (she did have a minor cry after she got done....I think the stress of it got to her). But secondly, LOOK AT MY GIRL! I love seeing Ally smiling and vibrant and happy. She is back to being her normal goofy self...a side of her that I have not seen in over two and half years. I don't think we really realized how much the steroids were bringing her down (moodwise) and so now when she gets laughing and being goofy it just makes me all that more happy! And Evan, well Evan actually had strep throat in this picture...we didn't know it at the time, but 'tis true. So now we are just hoping that Ally and Carly don't come down with it. Especially with all of the holiday celebrating coming up and also because a fever still means a mandatory hospital visit and IV antibitiotics for Ally. I am crossing my fingers. We only have to make it 16 more days and then that rule will not apply. They have scheduled Ally's surgery to have her port removed. It will be done on December 28. This will be a good time since she is off school and can just take it easy. They will also be doing a bone marrow aspiration on her.

Ally has become one busy girl this year. She wants to do everything and who am I to tell her no. So I do my best to get her everywhere and let her do as much as possible even if it runs the rest of us ragged. She currently takes piano lessons, does Tae Kwon Do twice a week, is on Student Council and Girl Scouts after school. She also takes a religion class twice a month, on top of regular Sunday school classes every week! I just signed her up for a winter basketball league too. Dr B wanted her to do something physical so she wouldn't have to do physical therapy...so we just took care of that.

We are truly counting our blessings this holiday season. And wish the best to you and yours.

Thankful

2011-11-28T22:31:00.001-05:00

We had so much to be thankful for this Thanksgiving. I do believe that this Thanksgiving was the first one since 2007 when I felt more happiness than sadness. I always feel grateful and blessed, but sometimes the sadness can still linger in there. First it was Mom, then it was Ally, but now we are walking down the right path again. We had such a beautiful Thanksgiving. Dad made a great Turkey...and all the girls made the fixings and we sat around a nice table and just enjoyed it. And we have a new baby in our family to snuggle! BONUS! And I was on some sort of endorphin high because I did my first ever 5-mile race courtesy of some encouragement from my friends Lara and Jenny. I have never ran that far in a race but it was a great way to start the day, for sure. I have attached some pictures from our fine day of thanks.

We also got to spend some good quality time in Junction City over the weekend with Jerad's family, and watch the Buckeyes play in the big game..... well never mind. There is always next year!

Right before Thanksgiving, we were actually at Dayton Children's for Ally's monthly check-up. Even though we had a bad day with her port (four times to access her and much yelling and crying...including her little sister crying because she had to watch)...we had a great report on her numbers. I am thinking that could be the last time they access her port (barring any fevers) because Dr. Broxson said she could have her surgery to get her port out a few days before Christmas!!!! Big news. They will also do a bone marrow biopsy that day (from her hip) to make sure her marrow is free of all leukemia cells. I would, of course, love some extra prayers for this particular test. This will be her first bone marrow in over two years.

After our appointment, we also got to be a part of the live K99.1 radiothon in which they raised over $200,000 for Dayton Children's. I can't believe how many people heard it! I was quite nervous to speak live on the radio. No chance for messing up or doing over. And Nancy Wilson does it all day long without fail. Amazing work they do with radiothon. I don't think I ever even realized how impactful that is on our community.

And the question that got me (LIVE): In the quiet and darkness of night did you ever think about losing Ally? and do you and Jerad still worry as much now, or has the worry subsided a bit?

And the answer to that question is YES and YES. I think I am still a few years out from being able to take my worry level down a notch. I worry now more than ever that the chemo is gone.

But God is good and we are hopeful. And thankful.

K99.1 Radiothon

2011-11-17T21:13:00.001-05:00

Every Year K99.1 FM does a radiothon during Thanksgiving week and the proceeds benefit Dayton Children's. I can remember hearing about it in the past. This year, they asked us to come to the station and tell Ally's story to Nancy Wilson. You may have heard of her also because she is very active with the LLS. She just lost her co-worker and very dear friend Steve Kerrigan to blood cancer within the past year. Of course, we agreed to help as we would do anything for Dayton Children's. We all sat in front of these huge microphones for a couple hours and answered questions, etc. Nancy even met with Ally on her own, because she was more likely to speak when Jerad and I weren't there. (She always defers questions to us)

So they took all the talking and edited it down and put it to her song...Ally got to choose...and the song is "The Climb" by Miley Cyrus. I remember posting the words to that song out here in the very beginning of her treatment. We used to listen to that song to inspire us to keep going. And now here the song is being used to tell Ally's story...with her voice, my voice, and Jerad's voice dubbed in. They did a remarkable job and I hope that it helps to raise awareness and money for the hospital. I hope you will take a minute to listen to it here...or even tune in next week. I saw a full page add about the radiothon in the Dayton Daily News today.

This is Ally and Nancy in the recording room. You should be able to press play to hear the song...

Nancy let us go in to Channel 7's studio while the news was on. (it was 6pm) Very cool. And then we got to play a little! Ally's shirt was green so she blended right in. I guess the weather people cannot wear green!

I even got to sit at the weather desk. Anyone who knows me knows I love some good weather drama! Bring on the snowstorms!

And here we all are. This might explain why Evan told me at bedtime that he is "famous"....I was like, uh, why??? And he says....you know the Ally's Army stuff. He is really just so used to it.

I loved all of the comments after my last slideshow. Running Ally's Army gets to be some work! Always good to hear people's reactions when I spend hours doing something! Dayton Children's even hooked it up to their website.

Thanks again for following our story and praying for our girl.

Special Video

2011-11-08T23:36:00.001-05:00

Blogger friends: I know I have been neglectful. I know I used to put info out here almost daily and now I am lucky to post once a week. I know this has made some of you sad, and yet some of you happy. For those of you that have been wanting more....I worked all night tonight on a video/photo slideshow of Ally's last spinal tap at the hospital. With Dr Broxson's permission (of course) he left me document the day of her very last spinal tap and chemo infusion through her port. You might wonder why on Earth I would want pictures of this?? A video montage, really? The reason is mostly for Ally. The entire 28 months she never remembered one minute of her spinals. This was the way it was supposed to be and I never wanted her to know what was going on because I never wanted any FEAR to enter the picture on her part. But the truth is that she was curious as to what happened. And she deserves to know. And one day, a long time from now I pray, she will look back on this with pride and strength and gratitude. She has seen the pictures, but not yet this video (it is midnight right now!)

And the music is specially picked. Katy Perry (one of our faves) and her song Firework. If you have never seen the video, view it next! She features a kid battling cancer.

But the video is not just for her. It is for me. And her Dad. And her brother and sister someday. And for anyone else out there in the blogosphere who just wants to know what a spinal tap is. And how a little girl looks while going through it. But for most of you it will just be to see Ally....doing something that she did I believe over 20 times.

Please watch! Because I spent three hours making it and a bunch of my day taking pictures for it!

And I pray we never have to do this again. Amen.

Surprise Vacation Pictures

2011-10-27T22:48:00.001-04:00

Here are a few pictures from the surprise vacation that we took to celebrate the end of Ally's chemotherapy. I have such fond memories of this trip! We got to have the best of both worlds...a few days at Disney World...and a few days of just relaxing at the beach and the pool. Everything went so well, and everyone happily got along. It was kinda nice to just focus on the five of us and being together and having a good time. Here we are with the most famous Mickey and Minnie!

Highlight for Ally: Celebrating her 10th birthday at Disney World complete with fireworks after her birthday dinner!

Highlight for Carly: Meeting Cinderella and believing it was really Cinderella.

Highlight for Evan: Riding on Pirates of the Carribean, his most recent fascination.

Highlight for Me: Relaxing on the beach with my family and looking for sand dollars.

Highlight for Jerad: Playing the famed Harbourtown Golf Course. Oh wait, that was when we went to Hilton Head.

It will certainly be a trip that we never forget!

Appt update.

2011-10-19T11:21:00.004-04:00

Her bloodwork came back great! ANC was somewhere in the 3000 range. As she continues to rid herself of the medicine in her system, the ANC will grow. Dr B says normal is somewhere between 5000-10000. What a huge huge huge relief. I had made myself almost sick over worry. The other good news is that her liver numbers came down to normal for the first time in over two years. This supports our earlier conclusion that the 6-MP and methotrexate were taking a toll on her liver. I was glad to see them normal. It is pretty amazing to look at a blood panel report and not see an "abnormal" asterisk on every single line.

She did have a crying spell over having to pee in a cup. Just flat refused. And then when they told her she HAD to get a flu shot (no choice in the matter) she just went ballistic. Huge crying screaming fit...two nurses and me holding her down....trying to refuse it and even batting at the nurses. She did the same thing last year. You would think a girl that has gotten poked by a needle in her chest hundreds of times could handle a very thin needle into the arm. Jerad and I are thinking it was just one more thing and she is so ready to be done with all of this. Regardless, it was ugly to watch and her little sister got to witness the whole episode and she gets her flu shot on Tuesday I believe! ugh

It doesn't matter though. All is good in the world for now. We got to rest last night without worry bogging us down.

One more hurdle. JUMPED.

AND one more thing: 15 years ago today I married Jerad. Happy Anniversary Jerad! I did not probably realize at the time, but I married the most laid back, kindest, biggest hearted guy there is. He would do anything for me. Honestly, he would do anything for anybody that asked. And without him to help me through all these trials over the last four years I would be locked up in a mental ward somewhere. Truly. I am so grateful.

Jittery

2011-10-17T21:58:00.006-04:00

The Barnetts are back in town. I cannot even begin to explain how wonderful our trip was. It was so great to go on a "chemo free" trip (easy to get through the security with no liquids now!). The kids were so wonderful. They (we) all got along very well and we enjoyed being together for an extended period of time. We had a couple days with Dad and Barbara at the condo in Longboat Key. Then we drove over to Disneyworld (about two hours) and spent two nights and three days there. Three days was just enough for me and my feet! Lots of walking and we were always pushing two of the kids in a rental stroller....that's still the only way Ally can do it. We did Animal Kingdom, Magic Kingdom, and Hollywood Studios. I realized exactly how fun and special it was when we were leaving on the last night and Ally started crying because she didn't want to leave. But happy day...we got to go back to Longboat and have two and half more days at the beach! And we even found a few sand dollars. I have such a backlog of pictures to share from a multitude of things. I could keep this blog going forever...but now just trying to get back into the swing of things.

And honestly, I am finding myself in a bit of a tunnel tonight. Ally goes back to the hospital tomorrow for her monthly appointment. They will test her blood after a full month of no chemo and I have been extra anxious and stressed today. I know it is just one more thing I have to get through, but she has had a few things lately that make me worry (rash, headache, etc). A lot of people ask me how I have gotten by in the past with the stress of everything around me. Truth is...I have this uncanny ability to remove myself from this situation...almost as if it is happening to someone else. This is how I have been able to get up and speak on such an emotional subject in front of people so many times. I really don't let myself go "there" all too often. I change subjects in my mind about 100 times a day. This is why I may also seem so scatter-brained! But anyway, today the stress of Ally's test is in the forefront of all my thoughts. And today I couldn't seem to escape from it. As much as I tried to "change the subject" of my thoughts, the worry kept coming back. I just keep telling myself to have faith. Have Faith Janel. This is just another step along the way that I have seen so many other people struggle with.

I could use a few extra prayers though. And will post more when we know her counts.

PS...If anyone is interested, WSU Soccer is doing Ally's Army night again on Saturday night at 7. They are raising money on our behalf to donate to one of our causes. We would love to see any Army members there.

Another surprise!

2011-10-09T20:55:00.003-04:00

We pulled off one more monumental surprise for Ally. We decided to take her to Florida to celebrate her end of treatment and also her golden birthday. She turns 10 on 10-10! We didn't tell her or the other kids until 830 in the morning and we had to leave by 9! Unbelievably, we pulled it off and she had no idea. They were shocked, happy, and had lots of questions. No screaming though...not these laid back kids. As has been their nature their whole lives they are all laid-back go with the flow kind of kids. Which has been a good thing with all that they have faced in their short little lives. But it also means, no bursting into tears of joy about an unplanned trip to Florida. It's all good by me. That is just who they are. More to come....

And I still need to post some pictures from Light the Night 2011 which was another beautiful night. I am on a backlog of blogs lately, but right now trying to enjoy my family and all the little things I always miss as life rushes by in our normal lives. I think I even "unplugged" myself from my phone for most of the day today. I NEVER do that.

Happy Birthday tomorrow to my dear first born daughter Allison Eileen. So many people love you, but none more than your Momma. (and Daddy)

Light the Night Walk 2011

2011-10-02T20:47:00.003-04:00

Back from Pennsylvania, and off to a wedding in Hilton Head. Busy times around here. Jerad and I were lucky to have a weekend to ourselves to see our friends Pat and Kathy get married on the beach. Thanks to Grandma, Aunt Tara and Uncle Bunk, we knew our kids were in good hands. Although Ally did not really want us to go, it turned out she did really great and even spent the night at her Aunt's house in Columbus. This is a huge step for her. She has had so much trouble sleeping over the past couple years that she never wants to be away from her bed or her parents. She spent the night once with her Pa and now this....baby steps in the right direction. Her nurses at the hospital keep trying to convince Ally to go to one of Paul Newman's world famous camps for kids with cancer....to which she adamantly says NO. Maybe someday, though. Maybe.

I have to admit I am getting a bit more nervous as the days click by with no chemo. It has now been 2 weeks. Part of me just wants to run her to the lab and get a blood draw. But that wasn't in the plan and when the feeling comes up I just say a little prayer instead. I keep constantly studying her...is she pale? What is that rash? I feel so guilty for never seeing the paleness right before her original diagnosis, because now looking back at pictures it was very evidently there.

Tomorrow we are doing a 2 hour interview with K99 FM's Nancy Wilson...I was trying to prepare Ally for it. I said "you just have to answer questions about your leukemia and the hospital, etc" So we started talking: The best thing about the hospital: obviously, Dr Broccoli (as we call him). The worst thing: she started remembering the time she had pancreatitis in the middle of the night and begged us to take her there. Pain.

I have failed to mention on here until now....well I actually purposely didn't mention because I don't want to ask anyone to do anything at all for us....but we are walking in the Light the Night walk for LLS on Thursday night (Oct 6). It is again at the Fraze Pavilion at dusk with the lighted balloons. We have had huge teams for the last two years, but this year I focused on the Curesearch Walk instead. (Thank you by the way...we raised almost $7000!) But I love this walk and watching my girl walk and wear her survivor shirt and carry a white balloon. Anyway, several of you that didn't do the Curesearch walk asked me about it. Here is our webpage to sign up:

http://pages.lightthenight.org/soh/Dayton11/JBarnett

No obligation! Or you can probably just show up and look for the orange shirts too! We would be thrilled to have anyone walk with us. Supposed to be a nice night again.

I will continue to pray that many more people get to wear that SURVIVOR shirt including my sweet daughter Ally.

Together again

2011-09-27T07:55:00.010-04:00

Again I am delayed in writing. We had had a bit of a whirlwind month. The same day that Ally took her last chemo, I found out they had moved my Grandpa Jerry into hospice. This seems to follow my typical luck with things. He didn't last very long, which is probably a good thing, and passed away on September 22. I just got back from a trip back to Pennsylvania for his services.

Grandpa was a great man. One of those people that pretty much got along with everybody. He was an Irish Catholic and was always cracking a joke and was the "life of the party." In many ways, even by calling him Jerry, he reminds me of Jerad. He served in World War II and fought in the Battle of the Bulge. I am so proud of him for that and he earned not one, but two purple hearts. At his gravesite he was given full military honors including a six gun salute and the bugle playing Taps. I was doing alright until that song was played. That's a sad one.
I got through my third Eulogy in three years. 2009 I did it for my Mom. 2010 for my Grandma. 2011 for my Grandpa. I certainly hope I am done doing this task for a while.

Since this was my Mom's Dad, it brings back the pain all over again for me. Now, the whole side of that family is gone for me (except my Aunt who I remain close to.) Some of Mom's ashes even went with Grandpa, which was his wish. I can't help but smile a little bit thinking about him going through the gates into Heaven and seeing all his old friends...his golfing buddies, his hunting buddies....he was the last one standing at age 94! And of course seeing my Grandma again after losing her 10 months ago. And Mom. Oh how I wish I could go...just for a day and come right back.

So I found out I even have some blog readers in Pittsburgh...funny how people who have never met me can recognize me just from the blog and my pictures. Thank you all. And yes, I am going to keep doing this. There are many milestones in life to document and no reason to stop now.

Ally has turned the corner with her belly pain. Last Tuesday, when she went to the hospital for her antibiotic (no chemo!) they ran all sorts of tests again...xrays..etc. Nothing could be found. The doctor explained that he thought it was "functional stomach pain" Which he told us was a very real pain, not in her head, but caused by stress and transition. He said it happens all the time and there is not much you can do for it except try to keep her as busy as possible! He said a lot of the kids (and parents actually) go through post-traumatic stress disorder when the chemo is over. God help us with that. But just in the last few days she has stopped complaining of belly pain as the medication is leaving her system. Thank you God for that too.

I finished my Dayton Children's blog and they posted it up on their site. It was even featured on their home page which made me proud. You can finish reading what I originally posted here. I added a bit on her end of chemo party at the hospital and included what may be some of my favorite pictures EVER...her getting sprayed by blizzard spray with Dr B in the path too.

Check it out here:

http://blog.childrensdayton.org/2011/09/843-days.html

843 days

2011-09-19T22:33:00.007-04:00

Note: I am really not neglecting my blog or my Army. I have been asked by Dayton Children's to be a "guest blogger" for September Childhood Cancer Awareness Month. So for now, I have been spending my time working on the "other blog". I do have to say that we had an incredible weekend. I have many pictures that I want to share with you about our incredible day. Truly one of the best days of my life. Tomorrow we are headed back to the hospital for Ally to receive her monthly antibiotic infusion through her port (and hopefully to get some answers or a plan to deal with her chronic stomach pain) I believe the nurses will sign her "No more chemo" song and I wanted to include that at the end of this story. So here is a brief (or not so brief) version of our entire story in rough draft form. Feel free to send me comments on what I should change!

843 days. 843 days ago we heard the words no parent should ever have to hear: your daughter has leukemia. We learned only about 2000 kids in the whole country are diagnosed with this every year. The odds could be likened to winning the lottery. However we had just won the “reverse lottery” or so we called it. Our seven year old daughter Ally had just been diagnosed with ALL leukemia – high risk. Our lives became encompassed with medical protocols, research studies, chemotherapy drugs and binders listing side effects. Our doctors, nurses, and fellow patients became our family and Dayton Children’s became our home away from home. We spent countless days and nights, I believe somewhere around sixty days of the first year, in our home away from home. We came to know everyone there that surrounded us including aides, parking attendants, cooks and custodians.
Ally’s first year was incredibly hard. She suffered from all of the various side effects of her chemotherapy regimen. She got fevers. She got mouth sores so bad she would go on a morphine pump for a week at a time. She couldn’t even talk to us because it hurt so badly. She got pancreatitis. She was in a wheelchair at times because her joints hurt so bad she couldn’t walk. We dealt with vomiting, constipation, and lack of sleep for most of the year. We were forced to be inside our house, not allowed to go to restaurants, shops, parties, etc. due to her immune-compromised position. We relied on friends and family to help us with our other two kids… our son Evan, now 7 and our baby girl Carly, who is now 4.
The fact of the matter is that we made it through. Within a week of her diagnosis, we had formed an Army. Ally’s Army. This Army carried us through our darkest days…running our errands, making food, and taking care of our kids. About 4 months after her diagnosis, we had 400 member s of her army walking behind her at the Leukemia and Lymphoma Light the Night Walk. We had monumental success raising money in her name. Most importantly, we had the Army there with us…saying prayers for our girl every time we hit a bump in the road. I faithfully kept a blog for my daughter and for the Army. In those 843 days, I posted over 400 blog entries. I posted pretty much daily the entire first year. I wanted to raise awareness as to what childhood cancer was all about. I wanted people to know the good but also the bad. I wanted to lay it all out there in hopes that someday it would help another family going through a similar ordeal. There are so many emotions that a mother feels when her child is battling a life-threatening disease. We were in the trenches everyday fighting for our girl and encouraging our girl to fight through it all.
September 17, 2011 was the 843rd day. It was the last day that Ally, now almost 10, would have chemotherapy in her body. My little first grader at diagnosis, was now walking tall as a fourth grader at Valley Elementary in Beavercreek. She now has a year’s worth of curly red hair covering her head that I had rubbed so many times while she laid in her hospital bed. Coincidentally, it was the same day as the first ever Curesearch Walk for Childhood Cancer here in Dayton. All of her friends with cancer, all of their nurses, and all of our Army would come together on this day to walk to try to put an end to this disease for all. It couldn’t have been a more beautiful September day. It was perfectly sunny, not too hot and not too cold. As I walked up to the registration table, I couldn’t help but feel a giant lump in my throat. The lump held all my fears, my frustrations, my sadness, but also my joy and my pride that we had made it through. I looked out over the crowd and saw the kids that had been in the rooms next door to us while we stayed in the hospital. I saw the sea of orange Ally’s Army shirts. I could barely speak to anyone. My tears were coming off and on. I watched my daughter do the walk (2.4 miles) which is still quite a bit for her. And she is now one of the “healthy” ones. She had her scooter to help. But I couldn’t help but notice other kids stopping to vomit, sitting on the side, or even missing the walk altogether because of being in the ER with a fever. I will never forget. The walk was an incredible success and more importantly raised awareness that cancer does indeed affect children. September is Childhood Cancer Awareness Month.

But that day, the best was yet to come. My husband and I had planned a surprise party for Ally. We invited literally almost everyone we know to come celebrate the day that Ally would take her last chemo. She had absolutely no idea! We had the party in our backyard. One of the most amazing sights I have seen throughout my days fighting this was when Ally walked up to the yard. There were about 100 people from her Army lining the walkway and forming a tunnel with their hands in the air. The tunnel ran all the way into the backyard. She ran through it, wearing her medal from the walk, while everyone cheered for her. These people had been her cheerleaders all along. Cheering from behind their computers while reading her story…praying on her darkest days, but now exclaiming the joy that the treatment would be over. It gives me chills just to think about it. She played for the next 10 hours in the backyard on the giant inflatable toys we had rented for her . There were bunches of her friends there…laughing, singing, sliding, jumping, eating, and enjoying the perfectly sunny September day that we had been waiting for for so long. She took her last chemo dose right in the middle of the party.
843 days. The last day was truly one of the best days of my life. This chapter is closed. And a new chapter begins.

2011-09-15T22:40:00.003-04:00

Thanks to all who signed up for the walk! Our team has gotten bigger about every five minutes today. I wanted to post a map. The walk will be at Eastwood Park 1385 Harshman Road http://www.kintera.org/atf/cf/%7b353AD59A-D2B8-4761-B26D-F2735F50C5F9%7d/DAYTON%20CURESEARCH%20WALK%20-%20SITE%20MAP.PDF

• Registration and check-in will begin at 8:30 AM. I think most of you are registered online so probably not necessary to be there that early.
• The Opening Ceremony will begin at 9:30 AM.
• The CureSearch Walk follows the Opening Ceremony.
• The Closing Ceremony will follow the CureSearch Walk. Be sure to join us while they announce the fundraising total for the Dayton CureSearch Walk and the top 5 fundraising teams.

I believe they will give me vouchers for all of you that raised more than $100 to get your t-shirt! As of right now, Ally's Army is narrowly in 1st Place. We have raised $5500! We are only in first place by about $50 so I don't expect we will stay there.

Any of those still inclined to contribute, you can do so here.
http://www.curesearchwalk.org/dayton/allysarmy

And thank you to all of those who are coming to the party! I still think she has absolutely no idea! Jerad and I are staying up until all hours getting things ready and trying to keep our minds clear. It will be a very emotional time for us, so I apologize in advance for my tears!

Shhhhhhhhh. It's a surprise.....

2011-09-11T22:00:00.005-04:00

The countdown is on....we are now within a week. For about the last six days she has been really suffering with belly pain for whoknowswhy reason. I keep telling her...just stay strong. Just a few more days. And her ankles are really bothering her too...so much she burst into tears when we even discussed going on a family bike ride. No more chemo is soooo close now.

Jerad and I have (last minute) decided that we would like to SURPRISE Ally with a party at our house after the walk on Saturday. This is such a big deal for her and we and would like to celebrate with everyone. We will give her the last dose of chemo at the party and who knows what else! We can all sit back and relish in the day that we have been waiting for for such a long time.

The plan is this. Evan has a soccer game directly after the walk. Jerad is the coach of that game. He will just have the girls go with him (which they always do anyway so it won't be weird). When they arrive at our house after the game (about 1:30) we want as many people here as possible to SURPRISE her.

If you can make it to the walk but not the party, that's fine.

If you can make it to the party but not the walk, that's fine too!

Please, please, please, no gifts.

We will run it "open house" style. We will be here all afternoon so feel free to just drop in whenever.

I can ask nothing more of Ally's Army than the opportunity to thank you.

And if you are coming in from out of town for the walk, feel free to just come over right after the walk. I can just put you to work blowing up balloons or some such thing! ;)

And remember. It is a SURPRISE! Please don't mention to your kids if they are going to be around Ally! And don't breathe a word to our survivor girl!

Last Steroid

2011-09-06T22:36:00.007-04:00

Not the greatest picture, but I took this one of Ally right as she was taking her last steroid. The last time she will swallow these three little pills called prednisone. (well at least for this part of her life!)

Of all the drugs she has taken, this one takes the cake for the drug I hate the most. All the horrible side effects...over and over and over again. It steals her ability to sleep (and have sleep-overs!). It steals my silly little girl and makes her go into a bit of haze for a week out of every month. It makes her crave weird foods and makes my kitchen open for business non-stop 24 hours a day. It makes her head hurt. It makes her belly hurt. It makes her cheeks look like a chipmunk.

NO LONGER.

Jerad was walking the pill container over and getting ready to throw it in the trash can. I said "WAIT!!! I want to run over it with my car" Really. I do. The love-hate relationship that I have with a silly material item like a drug. It saved my daughter. I will never forget Dr B telling me that he could put half his kids into remission just with the steroid. It did save her. Thus you can see the love hate.....

And we now have 12 more days of waking her up at night to give her the chemo. After that....she will get to sleep. The whole night. Without disturbance. 12 more days.

All of these things seems little. But they all add up. I just finished telling her teacher and some of the administrators at her school: I am hoping for a very normal school year. I just want her to be a typical 4th grader. But I know....I know normal will never exist exactly like it used to. But I would like to give it a shot!

That also means there are 12 days left before the first annual Curesearch Walk for Childhood Cancer. We will spend the last day of chemo walking for her and all of the other little ones battling a disease that is bigger than all of them. Thanks to all who have signed up. Here are the details:

Registration at 8:30 (hopefully all of you will preregister at link below!)

Walk and opening ceremony at 9:30

Eastwood Park

1385 Harshman Road

Dayton OH 45431

And I am now begging...begging...if you haven't signed up yet, and plan to walk, please do so here. It is not too late! (A lot of people told me they were walking, but are not showing up on our list)

http://www.curesearchwalk.org/dayton/allysarmy

Thank you all, as always, for getting us this far and getting us through this last little bit.

Ally's Army will continue to do good things.

My mind can't quite get around it all yet. I am still pretending it is very far off in the distance.

It is:

Huge. Amazing. Monumental. Scary.

Blessed Time

2011-08-28T21:52:00.006-04:00

The Barnett and Mills families have truly had a blessed week. I am very happy to be writing good news!! First of all, on Tuesday, Ally and Evan both had their first days of school. Ally is in fourth grade and Evan is in second grade. Let me show a small example of how far we have come. I noticed while looking through my pictures a remarkable difference (really in both of them)
This picture is last year, 2010. The hair had just started to come back, but she still chose to wear a hat. (as she did the entire 2nd grade year too!)
And here they are on Tuesday. 2011, a full year of hair growth. Looking much healthier with longer hair (a full year's worth) and even a little chubbier (another year of steroids!) What a difference.

The very next day, Wednesday, my sister Melissa and her husband Gavin welcomed their third baby into the family. They had a healthy baby boy, named Camden, weighing in at 10 lbs 7 oz. He has stolen my heart. Ally asks to see him literally almost every hour. So about once a day I have been walking across the street with Ally (my sis lives right across the street from me!) and we get a little snuggle session in with him. Now my sister can officially start her own show titled "My Three Sons" or have her own baseball team or in her case, with her big boys, her own defensive line. (Man, those jokes are gonna get old, Melissa) I had one of the most awesome experiences of my entire life because I was right there by her side when Camden was born!!!! I am very proud of my sister (no drugs!) and very proud of my nephew.

So on Friday...another HUGE day for our family. It was Ally's last spinal tap! I am hoping FOREVER. She went under sedation and got her last dose of chemo into her spine. She also got her last dose of chemo into her port in her chest. She will continue with her daily chemo until September 17....and then she will be done with that! Most importantly, the spinal fluid was clear! After our last spinal, which went horribly because they had to try three times, I was worried. But she seemed very relaxed going in (not sure why) and she did great. One poke and done. She wanted to see what it was like, and I wanted to be able to show her, so I took a bunch of pictures during the procedure after asking Dr B if it was okay. I guess I am not the first person to document this. It was a good thing for me to do because it kept me busy and not crying through the whole thing! Anyway, I will share those pictures later with everybody. I took a lot! We showed Ally. The only reason I showed her what they do is because she doesn't have to do it again. She has never remembered one thing about any of the spinals, which is a blessing in itself.

Dr B also decided not to do the bone marrow test at that time. It makes sense now that I think about it. He wants to wait and do the bone marrow during her surgery to get her port out. She will be under general anethesia at that time and won't feel it. It will also allow us to see how her body is doing after three months without chemo. I just wish I would have known this sooner so I wouldn't have worried so much. So we will wait for that to be done.....

And finally, on Saturday, the 2nd Annual TJ Chumps Rally for Ally motorcycle run was held. Lots of caring people on motorcycles rode all day from 9-4 for our cause. They went to all 3 TJ Chumps, even running into my Dad at the Fairborn location, and also several other bars. My friend Lori Fultz, who is former co-worker of mine, spends a lot of time and effort organizing this on our behalf. She is just one of those people who have a heart of gold and does it for no other reason than to just be nice and help a good cause. I am so grateful to her! Because of her hard work, the donations of many kind people for the raffle (TJ Chumps donated a 40" flatscreen!), and all of those that participated we will be adding $700 to our Curesearch total for the walk. I was so impressed that some of the wait staff at Chump's were giving half of their tips to our cause. So to Lori and Jim and everyone else: THANK YOU SO MUCH! And we were so blessed to have Jerad's Uncle Bill and his friend Steve ride down all the way from Junction City to represent our family in the event.

Here is Ally welcoming the riders back in:

So that was our busy, blessed week in review. I hope to have many more good posts to write about. The power of prayer is what got us to where we are today. With God all things are possible.

TJ Chumps Rally for Ally

2011-08-22T19:22:00.003-04:00

Please see the attached picture for the Rally for Ally event to be held this Saturday, August 27th. (You might have to double click the picture and blow it up a bit!) It is again starting and ending at TJ Chumps in Englewood. If you or anyone you know ride motorcycles, this was a really great event last year. We are grateful to them for again riding in Ally's name. I know it has been publicized on WTUE and at all of the TJ Chumps location, but I have failed to post it out here. (Please forgive me Uncle Bill) If you need any further information just let me know! We will be there at the finish line (assuming Ally's spinal and bone marrow are not too hard on her this Friday!)

Last Friday of Summer

2011-08-19T10:01:00.006-04:00

Today is the last Friday of the summer. The first summer that my kids are finally old enough that they don't wake me one second after they get out of bed. Which is really nice, by the way. We have really done nothing these last two weeks of summer. Well nothing in my book = lots of fun times with the kids. I have spent some time with my sister...who is due to give birth to her third child any day! Here are a few pictures from the day we spent together at the Children's Garden at Wegerzyn.

And my very cute, but about ready to pop sister: Melissa.
And my sweet little boy turned 7! As he was going to bed, the last night that he was 6, I told him that I just wished he could stay 6 forever. And the weirdest thing is....he agreed! Usually he always wants to get older, but for that one blink in time it was as if he knew how good he has it. He had the most awesome birthday party with a few of his friends at Fox Hill pool. I wanted to surprise him with a dunk tank...but got back from vacation and all the rentals were gone. Enter in Evan's Pa to the equation.....who is now the proud owner of a dunk tank. We now have a dunk tank to add to the arsenal of fun at Fox Hill. SEE?!? He is a very lucky boy.

He's Up!

And he's down.
Ally girl takes the fall.....
My very awesome concession stand workers.....the best!

He even had a dunk tank cake (shared with my Dad who has the same birthday as Evan!)

And this is just the coolest mid-air shot I got of my nephew Owen.Really I have so many good memories from this summer and like a lot of Mom's I don't want it to end. But I also know that it has to because my kids have gotten super lazy and they need a little more structure to their days.

For me, as everyone is gearing up for school and buying this and that and fretting over tiny details like clothes and school supplies and lunch boxes.....well, I find myself only focusing on one thing: the end of treatment for Ally. It is first and foremost in my mind when I wake up and also fills my prayers when I lay down at night. The day I have waited for for so long is rapidly approaching.

I am scared. I will say it now and get it out there. A week from today Ally will have her last spinal tap. Her last push of methotrexate will travel up her spinal cord and envelop her brain. She will lay "upside down" for an hour one last time and let the chemo do its job. But the scariest part for me, is that Dr B will stick a giant needle in her hip bone next Friday and pull out a sample of her bone marrow. We have not done this for almost two years. No scientist has looked at her marrow under a microscope and checked for leukemic cells in a very long time. (they check her spinal fluid, but not the bone marrow) I keep telling myself all will be good, but I also know that this is the closest I will get to receiving yet another phone call that could bring me to my knees in my instant. So I am just asking for extra extra extra prayers from my Army and my friends and my family who have carried us this far. We are on mile 25 of 26 of our marathon, but we must cross the finish line with all the strength that we have.

And finally I will again ask, if you can, that you walk with us (and all the kids battling cancer) on the morning of Sept 17. It will be a monumental day for us. The exact last day that Ally will take her chemo at home. The information on the 1st annual Curesearch walk is here:

http://www.curesearchwalk.org/dayton/allysarmy

I am also closing out the Ally's Army shirt order this weekend. I already have about 50 shirts to order, but if you would like one send me a quick note at janelbcpa@aol.com. They are $5 each.

Thanks as always for following our story and praying for our family!

Back From Florida

2011-08-09T21:46:00.005-04:00

We just got back from a week spent in Navarre Florida with Jerad's family. His immediate family is 25 people. This includes him and four siblings and 13 grandchildren! And yes we all stayed in one house. Did I mention 13 kids!?! We ended up driving down and had a nice time visiting with everyone. We had a scare in that 10 of the kids got a horrible rash which turned out to be something from the ocean with jellyfish larvae. We also had about the same number of kids end up with ear infections/swimmers ear. We spent a few days at urgent care/drs offices which was nothing new to us...and I spent a bunch of time praying that Ally would not come down with a fever. That would have meant a stranger...in an adult hospital...would have had to access her port and give her IV antibiotics. I was very fearful of that but we made it thru. She is still taking amoxicillian for her ear infections and still having some pain in her ears so we will see what that develops into (if anything).
Here are a few pics from vaca:

I am still trying to organize our Ally's Army team for the curesearch walk for childhood cancer. Again, it is on Sept 17 th. (Ally's last day of chemo too!) You can sign up to walk or just donate here.

http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=452918&team=4257042

I am having some Ally's Army t-shirts printed up again for some people that are walking. They look like this:

If you would like one for the walk (or just to have one) please send me an email at janelbcpa@aol.com with the size you would like. Youth or Adult. They are making them for me for just $5 a shirt! I will accept orders until Aug 20! I can't imagine we will order anymore anytime soon...so if you want one now is the time! Just let me know.

First Haircut

2011-07-29T11:56:00.005-04:00

First Haircut! In about 28 months.

Just a teeny tiny bit of hair came off to shape it up a little!

Just another momentous occasion that I thought I would share with the army.

We also had our monthly chemotherapy appointment on Thursday. Ally did really well this time. Her friend and "big sister" Alex went with us and that alone actually made it much better for her. Her ANC was 2600 so Dr B kept her medicine the same. We talked a lot about "the plan." And here it is.....all spelled out for all...

She just had her last infusion in the clinic.
In august, the first week of school (boo) she will go into the hospital for her last spinal tap and a bone marrow aspiration from her hip. She will get her last dose of chemotherapy thru her port at this time.
She will then start her last 5 day pulse of steroids and continue with her nightly chemotherapy until September 17th.

The nurses and doctors seemed almost dumbfounded that her last chemotherapy day EVER coincided with the first EVER Curesearch walk to be held in Dayton for the kids. How amazingly cool is that. I almost can't believe it. I can't believe the whole series of events that are facing us. I am back to crying at the drop of a hat just even thinking about it.....something I rarely let myself do except for just the strict planning of it all.

We would be so thankful to anyone who could join us for the day of the walk. Please come and give our Ally girl a hug. Give me a hug. And help us celebrate a day that has been so long coming for our families. And thank you to those who have already signed up to walk and /or donated to our cause. You can sign up here:

http://www.curesearchwalk.org/dayton/allysarmy

- Posted using BlogPress from my iPhone

Curesearch Walk Sign-Up

2011-07-25T22:43:00.004-04:00

Hello Ally's Army. A short time ago I mentioned a walk that we are going to be doing in honor of Ally. It is called the Curesearch Walk. Unless you are a victim of childhood cancer, you have probably never heard of Curesearch. The truth is that this organization is the reason that my daughter is alive today. They are first and foremost doing research for CHILDHOOD cancer and developing the protocols for the medicine that Ally has taken.

CureSearch for Children’s Cancer is a national non-profit foundation which funds the lifesaving, collaborative research of the Children’s Oncology Group (COG), the world’s largest, cooperative children’s cancer research entity. Money raised supports bench-to-bedside research which includes developing studies, enrolling and treating patients and interpreting the results of the clinical trials.

The COG study is the one that Ally participated in. And the ones before her are the studies that developed the protocol that helped to save her. Many many kids who have gone before her, paved the way with these studies. Likewise, her study has paved the way for those to be diagnosed down the road.

This is the organization that her doctors and nurses are involved with and they are all in support of this walk and will be there! As will all of Ally's friends from the hospital. They made a short video that includes many of Ally's friends (and Ally!) who you may have heard me speak of over the last two years. These are not nationwide people...but local people battling cancer. Bonnie, Amanda, Kayleigh, Jackie...just to name a few. Ally is at about the 2 min mark. Here is the video....and these are the reasons we walk:

Please consider walking with us.

You can sign up to walk here on my webpage:
http://www.curesearchwalk.org/dayton/allysarmy

Eastwood Park
September 17 2011
Registration / Check - in
9/17/2011 8:30 am - 9:30 am
Opening Ceremony / Walk Begins
9/17/2011 9:30 am - 12:30 pm

If you can't walk, you can also just donate to our cause. I would love for Ally's Army to stand behind this organization so near to my heart.

Chemo day is Thursday this week. I will post more later. I think I can count on one hand the number she has left, but I am still not letting myself go there.

Congrats to Miss Bonnie Noj who had her last chemo today. Ally has been right behind her the whole time. Same diagnosis and treatment plan. And her Mom has helped me through.....I couldn't be happier to have one less child going to bed tonight without a dose of chemo.

Happy Birthday Car Car!

2011-07-18T00:00:00.002-04:00

Happy Birthday to my baby girl Carly....it is so hard to believe that you are four years old already. Time just flies when you are having fun.....uh...I mean...no..sorry that most of your life as of yet could be an episode on Grey's Anatomy. On your sixth month birthday your Grandma was in surgery at the Cleveland Clinic. Your momma was gone a lot of the next year....and on your almost two year birthday, your sister got sick. And again....your momma was gone a lot.

You didn't fuss. You didn't know. You adopted a few more mommies who filled in while we were gone. Your Auntie Mel and Auntie Jess...and Mrs Winger...and Mrs Booher...and Jackie...they are all your favorites now. You didn't even know it, but you got a lot of extra love these first four years of your life.

And now your family is pretty normal again. You still have the occasional holding of sisters' hand while she gets her blood drawn. And you still know your way around the hospital pretty well, but maybe, just maybe, this fourth year....will be fun and just NORMAL. Well, that is what I pray for you every night. Every day I pray for you...

You are still the sweet girl that I love.

And maybe you are a little bit sassy (bossy?!?)

And oh how you to love to play.....

And your sister (and her friends) just dote on you all day long....

And your Daddy just loves to cuddle with you....

And your brother....well, he is a brother after all, but he might actually be your favorite.

Oh wait...I want to be your favorite?!??????

Because no matter how old you are, you will ALWAYS be my baby.....

And stop sucking that thumbie already! You are four now sister!!!!!!!!!!!!!!!!!

And special thanks to Erin Cobb for capturing ***this*** moment in my family's life in pictures. No matter the good, the bad, the ugly....I always want to have my pictures to remember.

Happy Birthday Carly girl......

Summer Fun!

2011-07-10T14:45:00.006-04:00

I have to say I am disappointed in myself for my lack of blogging. My intention is to do more. Although the medical information is not as prevalent now, this is still my little record of my families life and I want to keep it that way. There is no reason other than we have been super busy.....HAVING FUN. My kids are living the spoiled summer life. Just within the past ten days or so we have:

1) Went to our family lakehouse with Dad and Barbara (first time in a year)

2) Went to the most Amazing Fourth of July party ever (complete with fireworks)

3) Had a pool party

4) Went to see The Lion King (incredible too, I must add)

5) Went to Kings Island with A Kid Again with other sick kids.

6) Went canoeing with friends

7) Celebrated Jerad's birthday with friends.

We also had two kids birthday parties, swim practice, fishing, regular time at the pool....well you get the idea. Things around here do not seem to be getting done, unless it happens from 10pm -1 am every night which seems to be my new bedtime! Again I will say that we are making up for much lost time when Ally was so sick. I guess I need to find a balance because sometimes all the fun can actually stress me out when I get home and see all the things I have neglected. (like this blog!)

Ally did have her monthly chemo last Friday. Her ANC was still very high (like 3500)...however Dr B did not change her daily chemo meds yet again because he said she also had some 2000's thrown in the ANC pattern in the last few months. So I guess as long as he is happy, then I am happy. She did really well with the chemo this time, just a few stomachaches...and of course the many nights of not sleeping well because of her steroids.

Here are some of the many (MANY) pictures of our summertime fun:

Jerad's sister Amanda was in from FL

Carly touched a worm! We caught tons of fish!
They love to run down the big hill. Over and over and over.

Just love the blue eyes on that child.
Cheering on my swimmers at Cardinal Hill Swim meet.

Pa came to watch three of his grandkids who swim!
At VBS at Kirkmont with two of his best friends...
With cousin Owen after they each won a race.
At Lake St Marys....
Biggest S'more EVER

At my old pool with my Mom's best friend Larue (and Bill) who came to watch...
That's Evan hanging from the trapeze artist at the Fourth of July party.

oh and they rode.....A CAMEL!
More baby blue eyes....
Love this shot of my whole family in red white and blue!
On the boat with Daddy...
Yep, a hayride on the FOURTH.
Pool Party throw in.

Jerad, Laura, and Nicki...

Pool party pizza chef....Larry Booher (and also world-renowned canoer)

My girls...always holding hands.

This is Ally's kindred spirit and friend Kayleigh...also an ALL survivor. They rode rides much of the day together at Kings Island and it just warmed my heart. Although there is a height difference, they are only a month apart in age. Both from Beavercreek too.

Carly made a new friend in Kaycee...(Kayleighs little sister)

Thanks to all who continue to follow our journey. I still love when people get on me for not posting to the blog. Because it means there are still people out there reading. Following our story. And pulling us through to the end. Thank you to all who still count themselves part of Ally's Army!!

First summer meet.

2011-06-24T16:30:00.001-04:00

Won her heat. Twice. She's getting stronger!

Brother and cousin did too. It was a fun (but cold) night!

- Posted using BlogPress from my iPhone

Location:Idle Hour Swim Club

Save the Date: Sept 17

2011-06-22T22:31:00.006-04:00

Ally seems to be doing a little better with the belly pain. She still finds a way to wake up pretty much every night (in the middle of the night) in pain. But her days are going really well and she is enjoying her summer. That will all probably be changed after she goes for chemo next week. We just get through it and then it comes on again. I am very proud to say she will be competing in her first "summer" swim meet tomorrow night (if the weather holds out). Summer swim seems to be more her speed. She is doing really well. Her brother Evan is also competing. He has done a lot of sports in his life as of yet, but I really think he is most excited about this meet coming up...more than I have ever seen with a soccer game/baseball game etc. He is also doing well....we will see how he does in the actual racing events.

Thank you for all of the kind comments about Ally being the hero. She deserves it.

I am going to gather a bit more information, but I wanted to put a Save The Date out here for anyone who wants to join us for a very special walk we are doing this year. It is the first annual Curesearch walk. Curesearch is the org that basically writes the protocols for all of the kids who have cancer. They are responsible for the actual protocol and studies that Ally is in. So the walk is very special to me because
1) It is just for the kids (unlike the LLS one we do that is for all with blood cancers)
2) It is just for cancer
3) It is the organization that means the most to Ally's drs, nurses, etc and they will be there!
4) All of Ally's friends from the hospital have formed teams and we will all be together.

It is very coincidental, but Ally's last day of treatment is scheduled to be Sept 16. The walk is going to be held on the morning of Sept 17. You all might have to carry me as I will be an emotional wreck.

It is crazy that these two dates coincide. But it will be a very special time for my whole family so hoping you will join us for the walk. Again, I will get our webpage set up for sign ups, etc and post out here soon!

Maybe we will have to follow it with a giant bonfire and burn all of Ally's medical supplies. I saw someone else do that. (oh but I am probably way too superstitious to do that, huh)

I found some pictures from our last event out on the Dayton Daily News website so thought I would post a few more. These were taken by their reporter at the event.

Ally Barnett-LLS Honored Hero

2011-06-13T00:13:00.003-04:00

So this is going way back. 10 years ago. The start of little baby Ally. I was pregnant with her (didn't know she was a "her" either) and this song came on the radio. I am sure everyone has heard it because it has been overplayed and used in cheesey ways now for about the full 10 years. But anyway, it was called "I hope you dance" by Lee Ann Womack. And it just struck a chord with me. I remember telling my friends about it at the time I was pregnant and my friend Jenny Robbins even got me a "I hope you dance" book for my birthday that year. And it still sits in Ally's room. And the messages still apply.

Somehow before I ever held my little baby girl in my arms...I had this strong desire for her to be passionate about something. I remember thinking if I can just get these messages across to my children, then I will have done my job as a mother.

Yes, they need to learn other stuff...how to potty, how to go to school, how to play nice, how to share....but I just wanted my kids to have some sense of conviction. A sense of wonder. I didn't want them to be just "good" at something, but to be passionate about something. To make a difference. It was just so strong in my heart that even when Ally got her leukemia....well I almost thought this is somehow meant to be. It was horrible, I hated every minute of it, still do!, but somehow this was our chance to be brave and tell our story. The good, the bad, and the ugly. And show just how passionate we are about never wanting this to happen to anyone else.

So the day of the LLS event the song came on the radio. I haven't heard it in a long time. But I don't think it happened by chance. I am strong believer that everything happens for a reason. The song was playing for me. So I was sitting in my car...and listening to the lyrics...but with a whole new set of ears.

"I hope you never fear those mountains in the distance.
Never settle for the path of least resistance.
Livin might mean takin' chances but they're worth takin
Loving might be a mistake but it's worth making"

Yea. Yea. That is what I meant to say to you so many times but didn't.

"Whenever one door closes I hope one more opens.
PROMISE me you will give FAITH a fighting chance"

And yes. Faith got us through. Just barely, but it did.

"Time is a wheel in constant motion always rolling us along. Tell me who wants to look back on their years and wonder where those years have gone. I hope you dance"

"And when you get the choice to sit it out or dance.....I hope you dance"

And dance we did. It would have been much easier to sit on our living room sofas and decline the chance to the honored hero. There would have been many less events to go to over the last ten weeks and much less preparing our story to be told (twice). It would have been infinitely easier to sit in the crowd and watch everyone else speak instead of getting up in front of 500(!) people at the Schuster Center. And tell a story that could bring me to my knees in tears if I let it.

But no. I wanted my daughter to see the passion. The strong desire I have to tell our story...and yes not leave out the ugly parts...not gloss it over for all the world to see. Not paint a pretty picture. But to see what it is like to live with leukemia. And also to see what it is like to SURVIVE. It was not easy. It was one of the harder things I have ever done. I told Jerad that I was more nervous than my wedding day. But the strength came through me and I somehow delivered my message. Maybe a little long, but I can't really collapse two years into a three minute deal. (I do think I was only about seven though) A few friends asked me to post it. I am not asking that you watch it unless you have extra time and extra desire! This post is long enough.

The most important part of the night for me was recognizing the most humble Dr. Emmett Broxson who was sitting in the crowd with a few of Ally's nurses and another of her Drs. (Dr Dole) The man deserves every good thing that ever comes to him as he spends his life helping little kids fight cancer. Every. Day. And they don't always win. But he keeps fighting. So it was my sincere joy when he walked up on stage with us and let the crowd recognize him for all he has done.

Here is the video....my Dad spoke right before me. All about his fundraising efforts last year and how he became the 2010 Man of the Year... so it starts at the point that introduces me.

Again...feel free to bypass...just putting this out for a few people who specifically asked for it!

And here are some pictures. (photos courtesy of my brother in law Bunk Colombini...love you Bunkie)

Ally with her Pa

And Grandma Barnett
And Dr B...wearing her Emily's Beads of Courage proudly.
The poster of her story at the event.....

Pa pointing out Evan's tie (first time EVER!)

Telling our story

She quietly stands by while we tell all the details....
Dr B comes up on stage with us! So grateful....(brought me to tears)
True smiles from them both. They have a special relationship...
Happy to get her special flowers and gift....
Again with Dr B...darnit, Ally's eyes closed.
With Miss Vickie (who nominate her to be the hero and is also a lymphoma survivor)

And with the 2011 Man of year: Matt Graybill and Woman of Year: Sallie Taylor. Who both kindly mentioned Ally as a source of inspiration to get them through the campaign. We are thankful there are people willing to do this!

And Ally girl....I hope you know how sad your parents and grandparents and friends and family are that you have had to battle through disease at such a young age. I hope you know that we would do anything to take it away from you. You are a honored hero...not just for one night or one campaign or to one person....but to many. I know someday down the road this experience will make you more compassionate, more kind, and more giving. Everything that I want you to be. I hope you dance.......

Poor Ally.....

2011-06-06T20:21:00.003-04:00

I will start off this post by saying that Ally's spinal fluid came back clear. No cancer cells. Her ANC was hovering around 2200 and her bloodwork looked ok. Dr B did not change any meds for her. We are soo soo happy and relieved at this news.

However, Ally had one of the roughest days at the hospital yet. It seemed like everything that could go wrong did. It started when they accessed her port which is located in her chest. They always do this first....and then start her on a bolus of IV fluids before her spinal. I was not at the hospital yet for this, but apparently the first nurse went in with the needle to the chest and missed her port. Of course, this results in crying and screaming because it hurts. She called another nurse in....and that nurse tried to access her port. Also failing to get to the right spot and unable to get a blood draw (that is how they know they are "in" there....they pull back on the syringe and blood comes up). Ahhhhh. At this point, she was crawling out of her skin. Poor Ally and poor Jerad who said the entire fourth floor could hear her yelling. They finally called in her normal nurse, Susan, who tried a third time and had to wiggle around a a bit (also painful) but finally got it. Makes me so sad, especially when Jerad said she was crying for Mommy. :( I was getting Carly off to school and got there right after.

After she settles back down and gets her fluids, Dr B says it is time to go for the spinal. Early too. They take her into the procedure room and give her some meds to sedate her a bit. She really never goes to sleep....but she also never remembers the spinals. Which is good...because it took three times to get the spinal too!!! Wow it was super hard to watch. Every time he even touched her she would yell and he kept poking around with the needle between her vertebrae trying to get the fluid. Except no fluid was coming (except blood, of course) After two tries with her laying down, they finally got a few people to sort of hold her up and she laid on a bedside table. So she was kinda sitting this time. He eventually got it, but she was so miserable and in pain and I could not handle it well. I ended up silently crying through the whole thing. Looking at the bloody mess on the table and praying the fluid would just cooperate and we could be done with it. Jerad says...well you can get up in front of 500 people and tell our entire story, but you can't make it through the spinal. On the contrary, he can't talk about it in front of anyone, but stays strong during the procedure. I guess you could say we compliment each other well. :)

After getting her IV antibiotic and some chemo, we got to go home later that day. I asked her about it on the car ride home and she didn't remember the spinal at all. Thank God for verced. She does remember the port mishaps. She kept a heating pad on it for about three days. We did several doses of vicodin. She missed school Wed, Thurs, and part of Friday. Unfortunately, she is still really suffering from belly pain and also just finished up the evil steroids for the month. I hope she turns the corner here soon because there is swimming to be done and summer fun to be had. You can just tell by looking at her that she is not feeling so hot.

The next night (Thursday) she got to be the honored hero at the LLS Man/Woman of the Year event at the Schuster. It turned out to be a beautiful and moving night, so I think I will save that story for next time. But a hero is exactly what she is.

I am back!

2011-05-31T22:32:00.000-04:00

I am back after a wonderful weekend spent with my college roommates in Sedona Arizona! We had three straight days to just kick back, relax, hike, swim, go to the spa, eat, and chat about life in general. Wow I feel so grateful that I had the opportunity to go (thanks to my hubby!) and even more grateful that I have six lifelong friends who still long to be together. Not everyone is as fortunate in that area as I am. I personally think I hit the jackpot on that one. Here are a few of my favorite pictures from the trip....

My girls....

We had just hiked from 5000 ft to 9000 ft. Wow it was so amazing to be up so high. And there were butterflies just whizzing all around us. It was one of the most amazing spots I have ever been. And pretty much noone else was there but us.

We were so high some trees didn't have any green?

Our spa pool. Ahhhh. They delivered frozen grapes to your chair. I think that says it all.

Love this picture so much....the sunrise over the red rocks from our deck! Yes I was up super early every day because of the time change!

My friends did a very good job of keeping my mind off of things. Last Friday was the two year anniversary of Ally's diagnosis. I speak a lot to other families that are going through the journey and two years seems like a long time, but then again it doesn't. Well, last year seemed like forever, but now time seems to be flying. I cannot believe the things that I have seen, heard, and lived through since that day. Not just bad, but good too. Ally's Army has made so much good come from a bad situation. I am sharing my story with an audience of 500 or so (gulp) on Thursday night when we go to the Man of the Year final ceremony/auction, etc. We do our best to get the word out there and try to do anything to stop this disease. I think Ally's Army is like my part time job now. I'm always doing something!

Ally is not feeling so great today. She has headache. Stomachache. Ended up getting out of the pool crying at swim practice. It makes me sad. I don't know why she feels cruddy. I never do. Maybe she is just getting a bug or something. But I am a little extra nervous tonight because she is due into the hospital at 830 tomorrow (Wed) morning for her spinal tap and chemo. The procedure takes enough out of her as it is, so hopefully all goes well with her not feeling so well.

Extra prayers tonight. If all goes well, she will only have one (ONE!) more spinal tap after this one to finish out her protocol of 28 months. But I cannot even think too much about that yet.

Ally's Army hits Alabama

2011-05-22T23:16:00.000-04:00

I wanted to post an update on Ally's project of raising money for the tornado victims in Alabama. We had a two day garage sale...well our neighborhood has about 45 homes that have the sale so we get A LOT of traffic. We cooked about 130 hotdogs and we had a nacho machine and water. We were super busy with it both days...and we ended up raising about $150 after we paid for some of the food. Here is a picture of my sister manning the sale (she is probably gonna hate me for this)
Melissa and I had to do some of the work when Ally was at school, but she did it the rest of the time.

We took the money and bought a bunch of supplies and then gave the rest of the money to help Coach Rob (swim coach) and his wife Melisa get to Alabama. They are originally from right around where the tornados hit. They ended up hauling a huge trailer stocked full of relief supplies from Beavercreek to Alabama this weekend. They sent me this picture of Rob in front of the trailer wearing his Ally's Army shirt, so I had to share.

We have had another busy weekend...starting out going to the Dayton Children's board retreat up in Columbus. Jerad is on the board of directors for the hospital (and has been since before Ally's was even diagnosed) On the second day he got up and told everybody Ally's story...and Jerad doesn't like to talk about it in public because he gets too emotional...it is usually my job....but anyway he helped to paint the picture as to how valuable the hospital is to so many. We are so lucky to have a designated children's hospital 20 minutes from our home.

We also had soccer, baseball, dance, and family pictures taken (thanks Erin). We even got to enjoy the opening weekend of Fox Hill swimming pool which the kids absolutely loved.

As you can see we stay busy all of the time...sometimes I find myself complaining that we are too busy....but I cannot complain for long. It will be two years this week since the dreaded day. How far we have come.

Ally had bloodwork done on Thursday and her ANC has creeped back up to 3600...even with Dr B increasing her chemo. I am guessing he will probably increase it again. I am waiting for him to look it over. She also has a spinal tap coming up next week. We get a bit anxious about these and ask for some extra prayers that she will do well and the fluid will remain clear. It is starting to feel like summer around here...and we have many plans to make the best of it.

Clinic Update

2011-05-11T23:01:00.000-04:00

I apologize for not posting sooner...had a lot of people asking me what was going on and I have been neglectful with my blog! I have been busy getting ready for our neighborhood garage sale. For three years someone has been sick, first Mom then Ally...and I am continually amazed as to how much CRAP can accumulate when you are just struggling to get by. So it has been very therapeutic to get it out of my house now!

Anyway, we went down to the clinic on Friday and had a world-record two hour chemo appointment. That is super quick by our normal standards. Ally's ANC continued to be high...sitting at 2500 that day. Dr B seemed slightly hesitant about raising her chemo levels, but eventually he did. He raised her 6-MP for two days a week and is giving her another ml of methotrexate every Tuesday. (from 14 ml to 15 ml) He wants to look at her liver levels again in June when she gets her spinal. They are still high, but not out of control. It's funny how as a cancer parent we just accept so many things. High liver levels, ok, cataracts, sure, 20% chance of brain tumor, well...ok...brittle bones, no biggie....we just accept everything under the umbrella of please just save our daughter. We will deal with the rest later.

The scary thing is Dr B started to talk to me about being done with chemo. To which I promptly stopped him from discussing. I can't discuss it. I don't want to discuss it. Not yet. (I do believe the date is Sept 16th.) He just laughed at me and said ok. It is still months away. And I am a big believer in not jinxing anything.

We had a very busy Mother's Day. Church, up to Columbus, back to Dad's house for a fancy pasta dinner. Mother's Day is not so fun for me. I try. I do. But the void is still there and I am sorry I just can't pretend it is not, contrary to what most people would say to me...focus on your kids, yada yada yada. Well it is hard. But both my husband and my Dad tried to make the day special for me (and of course the kids too). And for that I am super grateful.

Back to the garage sale thing...Ally, in her infinite entrepreneurial ways (ie concession stand) has decided to sell nachos and hot dogs at our sale. Not to make money for herself, but wanting to help those tornado victims in Alabama. They are working on it both at school and via one of her swim coaches (who is from Alabama). I am proud of her for wanting to do something. One thing that these past two years has taught her is to give back. Not too many 9 year olds think about money in this regard.

I need to post some pictures from the Moms 4 Miracles event we attended on Saturday too...a great showing and hopefully more money raised for a good cause.

Thank you to Uncle Brad (Ally's Godfather) who ran a half marathon in Columbus with Team in Training on Saturday with Ally's name on his back. Thinking about all of her pain and suffering is what got him through...

Thank you to Aunt Melissa (Ally's Godmother) who tonight had 10 inches cut off her hair and donated to Locks of Love in Ally's name.

We couldn't be more blessed with a better Army. Thanks for all the prayers for our girl Ally.

Piano Recital

2011-05-05T21:48:00.005-04:00

I wanted to share Ally's first piano recital with you. I think her song (called Starfish at Night) is only 40 seconds or so...but I thought she did a really nice job. It is hard to get up on stage in front of a group of people and she has only been playing the piano since September. I know from personal experience it is hard to learn piano too! We were very proud of our daughter, who looked so grown up that day. And in typical Ally-fashion....she said she was not nervous at all. Man it takes a lot to rattle that girl! I am still not sure what does!

She has been feeling okay. Some belly pain, as usual. I did take her to get counts again last Friday and she shot back up to 3500. Again, they want the number about 1500. So, we will see what the doctor says. I am feeling more and more convinced that she needs more chemo because she has gained some weight. The dosage they started last summer was based on her weight then...and I think she is up about 10 pounds. We can thank her lovely steroids for that. They never seem to leave her system, even though she takes them 5 days out of every 28. She has such such trouble sleeping and is always hungry and begging for food. Usually food that is not healthy. I definitely try not to give in on this, but sometimes she gets the best of me. After all that she has been through, and knowing the meds are causing it, I have trouble saying no sometimes. But I do think we do a pretty good job...all things considered. She wants to start swimming again for the summer season and the doctor thinks that is the best thing for her. In fact he told me if she was not swimming, he might go ahead and put her into some physical therapy because of her joint pain/tightness, etc. So I am hoping the swimming just works out.

Believe it or not, we are back at the hospital tomorrow (Friday). 28 days just comes so fast. It is a regular chemo day, but a bit shorter as she won't be getting the IVIG immunity infusion now that we are out of the sick months. We will see what Dr Broxson says about these ANC numbers. I am feeling less worried about it, even though they went up, because they seem to be hovering in the same area.

Will update more after our hospital visit tomorrow....

Dayton's News Source :: Top Stories - Fmr. WHIO Reporter Sallie Taylor Needs Your Help

2011-04-28T10:29:00.000-04:00

Dayton's News Source :: Top Stories - Fmr. WHIO Reporter Sallie Taylor Needs Your Help

Here is the link to the story with Ally (and me). My thoughts on the story are this:

1. They did an incredible job with the story. Even digging through my blog and finding pictures to put out there that really painted the picture of what we went through. Ally's fave nurse Rachelle, with her radiation tech Crystal (in her MASK!), and all those days of being skinny and bald. It brought it all back for me.

2. The Moms for Miracles group really cares and there was Sallie getting all choked up (Kathy and I did too, but they didn't show that)

3. I was so worried about Ally speaking...she is so quiet...but they got some great bits from her. She has had to grow up way too fast as a result of all of this has had to put herself out there a lot in the public eye. I am so proud of her. She does it well. And she looked cute with the close up on her freckles...

4. I have watched it numerous times, each time it makes me cry more. I STILL cannot believe that this happened to our daughter. It is almost like looking into a snowglobe into my world from the outside in disbelief. I can't really explain it.

5. And speaking of disbelief, I have been praying so much for all of the tornado victims down in AL and GA. My friend Erin Cobb lives in Birmingham and I would like to hear she is ok??? It just goes to show, yet again, that your world can change in an instant. We have spent two years fighting for Ally's life and in two minutes lives ended with those tornados. Sad.

Thank you Kathy, Sallie, and everyone who helped make that story. We are one step closer to more people understanding the impact that blood cancers (all cancers) can have on families like mine.

Watch the news!

2011-04-26T22:45:00.000-04:00

Thanks for all the positive comments about Ally's counts. Believe it or not, after all of this time, we still love the support that we get from the blog. We still need our army and we still appreciate the prayers. Ally ended up having a great Easter weekend. I know personally I was finally able to sleep at night! Ally feels pretty good (always the belly pain) and has taken a liking to riding her bike and/or scooter around the block as many times a day as she can. It makes me so happy. Dr B has decided that he does want to check her counts again this Friday. We are back to going weekly. Miss Mona....she is the sweet tech that draws Ally's blood every week...well we have seen a lot of her lately. You know you have been doing this a long time when Mona is pretty much like part of our family. We love her. She is always hugging all three of the kids like they are her own.

I am posting some pictures from a few Easter events and the Relay for Life....

This is Renai....she has become a friend of Ally's since the soccer event last fall and organized the Relay for Life team: ZTAs for Ally's Army.

Here is Ally...with some of the other surivivors getting ready to walk the survivor lap. They all wore purple but of course Ally stuck with ORANGE.
Here is Ally with some of the ZTAs. Oh, and it poured and poured that night...poor girls had to camp out in it and keep on walking.

They gave Ally a survivor medal and all kinds of other embellishments. Then she walked around the quad with everyone yelling and cheering, using noisemakers, etc. It was pretty touching.

Here they are with EB.

I have a lot of nieces, but this is the "babiest" I got to hang with her on Easter quite a bit. Love her.

Ally with her Grandma.

Finding eggs at Pa's. Ally's great grandma was hiding a lot of them. Note the large bunnies that my Dad had going right in his family room. Typical.
The Mills cousins....

They were dyeing eggs at our family's Good Friday Fish Fry...

And finally, don't forget that Wednesday (today) is the day for watching Ally on the news. I haven't seen the story. I am a little nervous about it...so hard to sound intelligent when put right on the spot without a minute to think of your answer! We did our best though. Always working towards raising awareness on blood cancer. I think there are so many people out there that have no idea what all it involves or that kids are suffering from it everyday.

Fox 45 at 10 pm. ABC 22 at 11 pm. It will also air the next morning ....with a live segment from the studio with Sallie.

Happy Easter Weekend

2011-04-22T15:29:00.004-04:00

I just got the call and still have tears of joy running down my cheeks. Her ANC went down to 2520. Still a bit high, but way better than last week (almost 6000) and trending down, not up. Her white blood count went from 6.0 to 3.4. This is also good. Nurse said her numbers looked better and he may just have to tweak her at-home chemo a little. They want the ANC about 1000-1500.

Praising God today. Of all days Good Friday. Reminds me a bit of a couple years ago. We thought my Mom was dying on Good Friday. We made all the preparations, etc and sat with her all weekend in the ICU. On Easter Sunday she made a miraculous (by all accounts) recovery and there was little to no explanation. We got to enjoy being with her for one more year.

Thank you so much for all of your prayers. My girl is out working on some Easter eggs right now and preparing food for our family's Good Friday Fish Fry. I cannot even explain the worry we have been through this week....the amount of time we spent in prayer...and now the tremendous feeling of it being lifted off of us in time for the holiday.

Happy Easter.

ANC HIGHER (ugh)

2011-04-18T21:16:00.005-04:00

Just a bit of an update. We are still kind of in a waiting game situation. Ally ended up going to the clinic at school Friday with a very bad headache. The weeklong headache continued. I drove over to school and gave her some vicodin. She went right back to class without so much as a kiss for her Mom. That is just how she is. Amazing. However, I didn't want to go into the weekend knowing she was still in pain and worrying about the cause of the headache, so I called her Dr. His thinking was that the steroid was not causing the headache...but rather that she might be having an allergic reaction to the IVIG infusion she had gotten the week prior. He wanted me to stop giving the vicodin (said it is bad for her constipation, etc) and to give her benadryl instead. I did this Friday night. Saturday her headache was still there, but lessened and Sunday it was gone. Could be coincidence. I will never know. On the flip side, he said I could go get her counts done again. So we went on Friday. I was wanting the counts to go down and ease my mind. They did the opposite. Her ANC is up close to 6000 now. This in turn worried me more so that whole plan just flopped. It could be high for several reasons (illness, more chemo needed, steroids can even make it jump). So the waiting game continues and we go in again this Friday for more counts. If they don't go down by Friday I will not be happy. I feel a small bit better because she is acting fine again and playing etc, but I still just hate that 6000 number. I have found that cancer moms are VERY picky about what they want that number to be. Not too high, not too low. I have some pictures and a story to post soon....gotta get them all downloaded...but Ally walked in a Relay for Life event over at WSU on Friday night. It was quite amazing to watch her carry the banner saying Relay for Life and walk the survivor lap with a group of other people who appeared to be 5 times her age or more. All of the fraternities and sororities were cheering her on. Thank you ZTAs for all you do for Ally's Army. I promise to get the pictures out here soon. Many days I still get taken aback when I see/hear/read about my child (MY CHILD!!) being the face for cancer research, blood cancer hero, etc...when I see her face on these things...or watch her walking the survior lap and wearing the survivor shirt with a survivor medal around her neck...well I still start to think it is all just a very bad dream. Keep praying. I am holding strong to my faith that we will see lower numbers on Friday. Thank you Barbara for the picture taken while aboard our friends, The Soins, yacht in Florida. You might be seeing this on your Christmas card next year. (although Carly not cooperating with her cheesy grin)

Mid week update

2011-04-14T21:21:00.003-04:00

It's been a bad week for Ally. She has suffered most of the week with a terrible headache. I believe it is from the steroids but cannot be certain. Tylenol won't even budge it, so I actually dug out the vicodin. We tried that yesterday and today. I hate to resort to that, but it does help her a little bit. After the four hours wears off....the headache comes right back. Her stomach seems a little better or maybe it is just one thing overtaking the other. The head pain could be taking precedence. She did wake up hungry last night and wanted a snack (typical of most steroid kids, but she hasn't done it in a while). So we gave her a little midnight snack....which meant Jerad had to set his alarm for two hours later because her 6-MP is given two hours after her last food for the day. (he is our designated 6mp giver, I do the rest) Jerad was gone every night this week working which also led to a long week for everyone. I am ready for the weekend and ready for my girl to feel better. I guess if she doesn't feel better by tomorrow afternoon I will call down to the clinic. Of course I am still consumed with worry and I think I forgot how much it takes out of me. I am not functioning at a very high capacity right now. It wears me out and things start to crumble around me. And then how quickly I can remember the worried feeling and inability to sleep at night. So keep praying. I do have an update from Kathy Hart on when the story with Ally will be on TV. The story is for a group called Moms 4 Miracles, with Sallie Taylor (formerly a news reporter) leading the group. These ladies are great and they are having a big golf outing/derby day at Yankee Trace on May 7th to raise money for LLS. The story is scheduled to air Wednesday night, April 27th on Fox45 at 10 and ABC22 at 11. It will air the next morning, as well. I will let you know if anything changes. I will also try to get an online link. I also heard the story was in the Dayton Daily News today (Neighbors) but only for Centerville/Wash Twp/Oakwood. If someone has a copy I would love to have one for Ally's Memory Box!!!

Here is Ally with the ladies at the Man/Woman of the Year Kick Off. One of the ladies is also the wife of Dr Dole (one of Ally's oncologists) We are grateful to them for taking the fundraising so seriously and doing this in her honor. They have been so nice to Ally...checking in with us often.

Update from our Clinic Appointment

2011-04-10T20:59:00.004-04:00

I wanted to give an update from Ally's clinic appointment on Friday. Usually, they are somewhat uneventful, but not this time.

First, I want to do something that I haven't done for a while and that is ask my army for prayers. For Ally. I am trying not to get too worried, but I am worried and I have asked quite a few people already to pray for her. Her ANC number, which has hovered around 1500 for the better part of a year...has all the sudden shot up to close to 4000. Nothing has changed in her medication at all. We have not forgotten a dose (NEVER HAVE) so we are unclear as to why it would go up. The ANC is calculated based on white blood cells, which are produced when you get sick...but she hasn't been sick. Doctor B thought maybe something could be brewing (sickness) but all weekend has gone by and she still seems fine. So I guess there is just no rhyme or reason as to why this number has all the sudden gone up, so it just bothers me. The doctor told me not to worry. The nurse told me not to worry. But I am the Mom and when something new crops up that is just what I do. We are going back in two weeks, instead of a month, to get her blood checked again. So just pray about it for me and hopefully all will be well.

While we were there, the clinical nurse and Dr Broxson sat down with us to talk about some very significant findings that have come from the study that Ally is on. Most of the kids go into some sort of study...and this is why there have been huge strides in survivability rates because people are willing to be "tested" But the computer randomly picks what parts of the study you get...and you have to take what they tell you. No choice or no study. We signed on for it, reading very carefully all the agreements etc the very night that Ally was diagnosed. I still can't believe we had to make that decision with the mindset that we had at the time. In the end, we signed our daughter's treatment over to this study, but not knowing if we were truly doing the right thing.

Anyway, two very significant results came about. One...some kids took 14 days of Decadron right at the beginning and some took 28 days of prednisone. Both a steroid. There is now very strong evidence that the Decadron kids have a much higher 5 year survival rate. The study was so profound that they ended it early and have decided to give all ALL kids (less than 10 years old) decadron as standard therapy.

Ally had decadron. Praising God for this.

The second major finding had to do with the methotrexate part of her treatment. Some kids were admitted to the hospital and given huge bags of High Dose methotrexate over 24 hours followed by a rescue drug. They had to stay in the hospital for about 4 days at a time for this. Other kids were given Capizzi Methotrexate...this was just in the clinic and they were just given slightly higher doses of methotrexate each time. (via a push into their port) And no rescue drug was needed.

Again, the results were profoundly for the High Dose methotrexate treatment plan. Again, higher survival rates with this method. And again, all kids with ALL leukemia will now be getting this course of treatment and they are doing away with the Capizzi method. It is the new protocol.

Ally had the HD Methotrexate. She was getting the good drug.

I am not sure how we were so blessed that she randomly got picked for these two things and BOTH were the better option. And now her chances of survival are that much higher. The clincal nurse just looked at me and said "She's good. She's real good" And to think that HD methotrexate was absolutely the hardest thing we ever faced with Ally. But now, I am feeling as if it were all worth it. Spending all Fall of 2009 in the hospital doing it. Thank God it was the right thing to do.

Sorry again for all of the medical jargon. I like to put it out here because a lot of leukemia families follow our story. And it is just very interesting to me. The science of it. Amazing.

That being said, I still am worrying about the ANC number. And she is still really suffering with belly pain every single night. I feel horrible for her. So thanks for a little prayer for my girl...and for continuing to follow our story. We are still fighting the battle.....

Piano

2011-04-06T18:38:00.005-04:00

Ally has been working really hard on another piano piece. I can actually say that I recognize this song. Bonus. I thought I would record her again since everyone enjoyed it so much last time. Well really it is just for my Grandma....an avid blog reader....so here you go Ruthie:

In other news, we are being interviewed by a channel 11 local news reporter tomorrow night. I believe they are doing a story surrounding the Man/Woman of the Year and that Ally is the honored hero. Makes me nervous, especially since Ally is not a girl of many words. I will try to post out here when the story will air so you can watch/DVR it if you like.

We are heading down to the hospital on Friday for monthly chemo. I am hoping that this might be her last IVIG (immunity booster) infusion. With the weather breaking, so is the illness, and I am hoping we get a break from this soon. It will make each appointment about 2 hours shorter. Our current monthly appointment runs about 5-6 hours.

I am writing this blog entry from my iPhone (a gift from Jerad which I absolutely love) I am listening to my girls running and playing at the playground. I also had the privilege of going on an all day field trip today with Evan and his first grade class. These are all gifts to me....things that were taken away from me but now things that I have back and enjoy even that much more. I am especially appreciative today as I learned that a friend of a friend just had their son Cayden diagnosed with ALL. I have faith that we will both make it through. Say a prayer for all the little ones who are unfairly dealing with these diseases.

Here's my girls. On a sunny night. The most precious thing of all....(Ally carried her almost the entire way home)

I also have even more vacation pictures to post. Gonna get to that at some point.

- Posted using BlogPress from my iPhone

Longboat Key Spring Break

2011-03-28T19:29:00.000-04:00

Ally's Army has made it to Longboat Key Florida for Spring Break. Last year, my Dad bought a condo here on the beach. Last Spring Break my sister and her family went down to visit. I remember being so jealous and wishing I could go too, but as such, with Ally's condition, we could not. This year, we could! Ally is doing great and enjoying a much needed break from the cold weather. It has been about 85 degrees here (although today it rained, but we still had fun!)

We are getting spoiled by the beautiful beach and the pool and spending time together as family. I will let my pictures tell the story...I have been having fun using my camera again. Something that I have really not been doing for about the past year or so. I just wasn't feeling it....but now I am. So happy to share:

Looking for sand dollars and other shell treasures. This beach is known for great shells.

Carly is fascinated by the waves and water. She is so stinkin cute.

Showing her shell to Pa.

If you look closely you will see the sand all over her face.

Evan lost his front teeth within minutes of landing in Florida. The tooth fairy does come to Florida, we found out.

The kids love the hot tub and pool, which backs right up to the beach...you can see here.

Me playing with my camera. Trying to get the cool sun spots. Carmen will be proud of me. She is my camera teacher.....

The kiddlings with Barbara. They love hanging out with her and doing "shell projects" amongst other things.

Our neighbors and good friends the Grants are staying just down the road, so we have been enjoying time with them too. BONUS!

I will post more pictures later. I vowed to get these out here because I am making a "blurb" book of my blog someday. Someday might be in a few years, but I am going to do it!

Hope everyone is enjoying their week off of school.

Man and Woman of the Year Kick Off

2011-03-21T21:52:00.003-04:00

A quick report on Ally. She finished up her swimming season about a month ago. And I don't think I realized quite how good it was for her. All of the chemo that she gets...well it settles in her joints and it is painful. Her ankles get very tensed up and she can't do simple things that she wants to do like play basketball with her brother or ride her bike. Lately, she has been struggling with the joint pain again. And the neuropathy in her feet. I felt so bad for her when she told me that she "wanted" to ride her bike, but it just hurt too bad. Every night Jerad will wrap both her ankles with ace bandages. I am not really sure what it does, but maybe provide some mental boost for her. It is just a bit shocking to me, because we haven't seen this joint pain since early last fall...right about the time she had started swimming. I think the swimming just kept everything flowing for her. Dr French even talked to us about the steroids never really leaving her system. He said you have to exercise to get the steroids out of the fat stores of her body. And now that she is not exercising as much, I definitely see the steroids are harder on her. They are building up. Well I just wanted to note that out here...for all those battling the disease, I like to share my little bits of knowledge.

Secondly, I am pleased to say that LLS has chosen Ally to be their "honored hero" for the Man/Woman of the Year campaign that kicks off this week. All of those candidates will be raising money with her in mind and her story/face will be used in the media pieces you will see in regards to the campaign. So tomorrow, I have to go speak to the candidates and tell our story....some of them don't even know what having leukemia is like. It is our job to try to tell them...inspire them. Which meant I had to try to collapse our whole last 22 months into a short speech for the kick-off event tomorrow night. It was a bit hard, because as most will know, I could (and have) written a book on the subject. Anyway, since I typed it all out for my own purposes..I thought I would share it here. No new information, but even as I wrote it I think I have almost forgotten how bad it was and how far we have come. And it caused me to yet again count my blessings and thank Ally's Army. Here it is...written as though it will be spoken and not with perfect grammar, etc. Hopefully I can deliver it with strength and not sorrow.

Our daughter Ally was diagnosed with ALL leukemia, high risk, in May of 2009. She was 7 years old. A lot of people ask how we knew that Ally was sick. To be honest, our lives were a bit of a blur at that time. Just two months prior, I had lost my mother to metastatic bladder cancer at the age of 60. We were reeling from that loss when Ally decided that she didn’t want to go to school anymore. Likewise, she would run off of the soccer field crying. We dismissed it as grief for the loss of her Grandma and kept pushing her on. We went on a family vacation to try to “heal” from 15 months of battling cancer with my Mom. Ally sat in a chair by the side of the pool while her brother and sister played. We knew something was wrong and had even made an appointment to see the doctor. We were patiently waiting for our drs appointment time to come up. And I was honestly thinking that she had mono.
One day Ally could no longer get home from the bus stop, I called the dr and demanded to be seen that day. We were sent to Dayton Children’s for bloodwork and told to stay and wait for the results. Within an hour, we knew our first born daughter had leukemia Her hemoglobin was at 4 (usually 12) A bone marrow test the next day would confirm what kind. The day is a blur….much of the next year would be a blur. I remember my husband using his phone to google survivability rates of childhood leukemia.
Our nightmare was confirmed the next day when Dr Broxson did a bone marrow aspiration on Ally. She had Acute Lymphocytic Leukemia. We knew enough at that point to know that this is the “good leukemia” It had a higher cure rates than others. However over the course of the first month, we found out that Ally’s leukemia was high risk. A further test showed she would have to do a year of intense chemotherapy (instead of the typical 6 months). She would also have to undergo cranial radiation. 8 doses of radiation right to her brain. Leukemia likes to hide in the spinal fluid and around the brain and we had to do what we could to prevent a reoccurrence.
The chemotherapy was awful. It hit her hard. After being in the hospital for a week….having several blood transfusions and chemo…she was sent home. It was so scary to bring her home. She literally laid on the floor or the couch not moving. Her jaw hurt so bad (a side effect) she would not eat or even drink. After a few days of this, we heard her go down in the bathroom one morning. She had passed out from dehydration. My husband scooped her up, threw her in the car, and was at Dayton Children’s in 14 minutes.
Her chemotherapy continued for one whole year. Every week. Sometimes more. We lived at the hospital…spending something like 60 nights there. Including birthdays, anniversaries, and even Christmas. Most of her time spent there, was due to the side effects of the intense drugs they were giving her to save her life. She got fevers. She got mouth sores so bad she would go on a morphine pump for a week at a time. She couldn’t even talk to us because it hurt so bad. She got pancreatitis. She was in a wheelchair at times because her joints hurt so bad she couldn’t walk. We dealt with vomiting, constipation, and lack of sleep for most of the year. We were forced to be inside our house, not allowed to go to restaurants, shops, parties, etc due to her immune-compromised position. We relied on friends and family to help us with our other two kids… our son Evan, now 6 and our baby girl Carly, who is now 3.
Ally is actually still undergoing chemotherapy. She takes a little bit at home every day and still goes to the hospital one day a month. She is still tested all of the time. Her treatment should be over in fall of 2011 after 28 months of treatment. She will be followed for years after that…to determine the effects of all of the treatment on her body.
The fact of the matter is that we made it through. Within a week of her diagnosis, we had formed an Army. Ally’s Army. This Army carried us through our darkest days…running our errands, making food, taking care of our kids. We heard about the LLS Light the Night Walk. We wanted to have all of our Army walk behind Ally on a fall night that year. To show her our support. That night, we had and incredible showing of 400 people that walked behind her. And we amazingly raised $40,000 for LLS. What got us through the tough situation was trying to make something good come from something so bad. It was healing.
Similarly, my Dad wanted to do something in Ally’s honor. He was not a scientist nor a doctor, so he knew he could not do anything in that regard. But one thing he knew was that he was good at raising money. He signed up for the Man of the Year competition and surpassed everyone’s expectations. With a team of Ally’s Army to back him, he raised more money than anyone in the history of the program. He raised over $430,000 with the help of over 500 donors and sponsors. He became the National Man of the Year, from little old Beavercreek Ohio. His face, along with that of Ally, is now on the front of the LLS media and the National webpage.
So this year, when Lisa asked if Ally would like to be the Honored Hero for this LLS campaign I was honored. I was touched. I jumped at the chance to help again. Because Ally is such an inspiration to so many. Her strength and her positive attitude in tough times….well she is one tough little girl. And if she has already inspired so many, I hope that she can also inspire you. To help raise the funds to further the research to try to put an end to this disease. For all the survivors and for all of those currently battling the disease and for those who have yet to be diagnosed. The time to do something is now. And for all of those people out there…. I thank you in advance for all you will do.

She likes her hair...

2011-03-20T23:03:00.001-04:00

I will write more tomorrow! But quickly wanted to share a piece of Ally's schoolwork. Read the second line. She is so happy to have hair again.

- Posted using BlogPress from my iPhone

Spinal is clear!

2011-03-13T23:20:00.003-04:00

Ally did great! The spinal fluid was clear! Praise to God and thank you so much for your continued prayers for my sweet Ally.

Dr French actually did her spinal today. He was very slow and meticulous and gave her a little extra medicine this time as she is getting bigger. I think it ended up being the best spinal that she has ever had. We didn't have any vomiting or increased heart rate issues upon completion and she only cried a very little when he put the needle in. We were so grateful.

One crazy thing is that the hospital was so sick that they wouldn't even let her up to the normal area where she gets her spinals. I guess it was filled with RSV and flu patients. The whole hospital was full of it, so they decided to keep her down in surgery on the 2nd floor. They did her spinal and everything in a pre-op waiting room for patients. It was a little strange, but we made due and I was especially thankful that they chose to protect her from those germs. We still had our regular nurses...we had Alyssa...and she is an ALL survivor who was treated at Children's. She is now a RN. I love that. The compassion just shines right through her.

We decided to take a little video of Ally about 10 minutes after her procedure. I thought she would think it is funny to see herself all drugged up. I decided to share with you too....so not super exciting, but this is what she is like after her spinals.

Click here for video:

http://www.youtube.com/watch?v=gI0Dl_DAEs0

Again, we could not be more thrilled with the results of her test. Her bloodwork also looked great with no change in her daily chemotherapy medications. We are currently pushing through another steroid week. The power of prayer is awesome.

In like a Lion.....

2011-03-08T21:11:00.005-05:00

I forgot I wanted to say one more thing about Ally's curls. Many of the kids, (and adults too for that matter) have changes in their hair due to the chemotherapy. We always joke that Ally got the most expensive perm ever. But I really wanted her to have curls. I remember Christmas Day 2010, when we were in the hospital. Rough day. This beautiful little girl named Julia came to visit the patients that were there. She was a cancer survivor (kidney cancer). She was seriously the cutest little girl ever and her hair just hung in ringlets all around her face. I remember telling her Mom, Emily, that if I could just have that curly hair one day with Ally I would be so pleased. I think my prayers were answered on that one. And now Ally gets more comments on her hair than ever.

Things are settling back into normal around here. Well normal as far as sickness goes. I believe everyone went to school and met all their obligations last week. I don't think that had happened in our family since before Christmas. It was a good feeling. Believe it or not, Ally is still nursing a sore throat and cough though. Seems like you shouldn't really have a sore throat for two straight weeks so I think we will be talking to Dr Broxson about this on Friday. Maybe they can do a quick strep test.

Every time we go in for an appointment, we go through a huge checklist of questions from the nurse before we can get started. They ask everything...was there a rash, stomach ache, bumps, bruises, coughs, colds, bodily functions, etc etc. They always ask if there was a fever, and I always wonder.....how could that be? Wouldn't I have been in the hospital if so? But, for the first time, we will say yes to this question because she had a fever (well less than 101) but they didn't know about it.

Ally's spinal is just a few days away (Friday). As you can imagine, we spend a lot of time praying and hoping for the best results ever. It is nervewracking. Crazy mom that I am I take this "cancer healing stone" that her Aunt got for her and rub her with it before bed. Praying, singing, always wishing for her to be healed of the cancer.

This time of year is really rough on me. I lost my mom two years ago on March 15. I can play back the days leading up to her death like a record and that is just what I do. I have to purposefully make myself stop thinking about it. Especially when I try to sleep. It is just so hard to see the suffering of a loved one...and for me, my Mother, it is just still so traumatic for me. My huge problem, is that I never really had time to grieve and deal with my loss...because I was thrown into the world of leukemia and quickly shifted gears into doing everything in my power into saving my child.

But now, I must deal with it. For the past few weeks, I have been going through her clothes. It shouldn't result in so much agony for me, but it does. It is horrible and hard and I just never seem to get it done. I have loaded up my car several times. I find there are so many things that I just can't let go of. I don't know why. I guess it is all part of the process...and I am doing it now...and I am proud of myself for doing it. After two years. I guess I have been kinda busy though.....

Today, it was such a nice day. I love the Springtime coming (except now for those aforementioned feelings I deal with). So after a couple hours of more clothes sorting, we took a break and enjoyed all the natural beauty that Fox Hill has to offer. We fed Ma's ducks. And sometimes I think my Mom is walking right there with us. And today she was. I just know it.

Thanks for thinking of my family as we get through another Spinal Tap Friday.

Ally's Curls

2011-03-02T13:51:00.000-05:00

Many days I get asked the same question: "Was Ally's hair always curly like that?" Sometimes, it takes me back, because if you knew Ally before leukemia, you knew she looked like this.....

But the fact of the matter is, many of you, arguably the majority of you, didn't know Ally before her diagnosis. With the diagnosis, we formed Ally's Army, and now there are so many new people in our lives. Sometimes, people who even did know her ask me. And I can't blame them either because she really hasn't had hair since her first grade year. This is what it looked like about a month before diagnosis...she was hunting Easter Eggs at my Dad's house. You will see it is pretty darn well straight. It had a slight wave to it that required me to blow dry it. Wow. I just realized I haven't had to blow dry her hair in almost two years. I guess just a small bonus for me, because I hated doing that.

Here is a picture that I took of her curls last night out on our deck. The sun was shining right on her, so not sure that color is even accurate, because most people tell me that she has also lost her red hair and it is now more sandy brown. Oh...and I made her wash it right before this. You should see her when she wakes up in the morning. All I can compare it to is Albert Einstein. It is C-R-A-Z-Y. I don't even really know how to handle it much and if you know Ally she doesn't really care what it looks like.

But no matter what, we will take it. Because for so long, it was like this. And she is just so much healthier looking now. Even with her chipmunk steroid cheeks.

Just another example of how far we have come.

Please be in prayer for our girl Ally. She has another spinal tap next Friday...March 11. With every spinal tap she gets she is one more closer to being done with her treatment. But with every spinal we also allow the fear to creep back in and haunt us. We never want to go back.

Dear Cancer....we have had enough of you already. Please stay clear of our family and all who surround us. Thank you.

Thanks for your prayer.

Tuesday Update

2011-02-22T21:09:00.002-05:00

So....temp went down at bedtime last night. Down to 98.5. This allowed us to rest a little easier knowing that we weren't heading to the ER in the middle of darkness. This morning she was 99.5. Little worse. She seemed just fine most of the day, which is a bit odd. The other kids were worn out from the fever, but their fever was higher too. I think her body is quite used to "fevering" and she also has that IVIG immunity booster running through her. (infused every month to protect her from things like this). The fever hovered in the 99's most of the day. Her treatment team would probably laugh at me if I called that a fever.

I felt kinda bad because she was well enough to do things around the house, but I kept her home from school. I just never know with her, so better to error on the side of caution. I am still not sure what tomorrow holds. If she stays home tomorrow, that will be a week off. I am done trying to guess what the illness is going to do to my family.

She is going on a ten day headache right now. Darn steroids do it everytime. And she is up mutliple times every night. The steroids make her unable to sleep. And hungry. Don't ever take a kid on steroids grocery shopping with you. Just don't do it.

So in her efforts to find something to do today...she decided to make a cake from scratch. I don't remember a time when I have even done this. I am a box cake girl at best. But she had a cookbook from her cooking camp last summer and made the whole thing herself. From scratch. Even the frosting was from scratch. It was tasty too. It made a giant mess of the kitchen, but kept her away from the TV for most of the day.

Ally and her chocolate cake and her crazy hair:

I know tons of people are sick right now. Just yucky. We need Spring soon!

PS Carly is feeling better with her ear.

- Posted using BlogPress from my iPhone

Tough Times

2011-02-21T20:50:00.002-05:00

We have been having some really tough times around here. Evan and Carly have been sick for the better part of a week. They both had fever and a really bad croupy sounding cough. Actually, Evan has been sick four times since the beginning of the year. It makes me worry....even a seasoned veteran parent of a child with a long term illness can get worried. It just doesn't seem right to me. He does spend a lot of time wiggling his front tooth that is very loose. When he is at school, that just means germs...in his mouth. He seems to be getting better, but is still complaining about the ear infection he had two weeks ago.

Carly seemed to be doing better until today when she literally started screaming for 4 hours straight. Begging me to go to the doctor. We were at a movie at the time it hit. We ended up having to leave the movie and I took her straight to the doctor. Screaming. She has a double ear infection. She also had to have both ears flushed out as they were impacted. She doesn't even like it when you get a drop of water in her ears at bathtime. Holy cow. I swear I have never seen any of my kids in the type of screaming pain she was in today. Pain that won't go away. It was awful.

And Ally...she has been my trooper. Until tonight. Her fever just hit 100.1. At 101 we go to the ER. She gets hot because of her steroids. She hasn't been sleeping (also steroids). But I have a feeling that she is getting the virus now too. Poor girl. Except for her little body it is much harder to recover and also means port access, daily IV antibiotics, etc. Hoping you will say a prayer for her.

And my dog? That's a story for a different day. Because it is also making me sad and we don't have much time left.

I think we might have to reinstitute the bubble that we were in last year.
Or I may have to check myself into a psychiatric unit because I am just sitting right on the edge....

Will update tomorrow on what happens with Ally.

Happy Valentine's Day 2011.

2011-02-14T20:38:00.005-05:00

Valentine's Day has rolled around again. Maybe Valentine's Day is a somewhat silly "hallmark" holiday for adults, but not kids. It is one of my favorite holidays with them...maybe even most favorite...(hmmmm...have to think about that.) It is such a great day to love on them extra and there is no stress around this holiday whatsoever (unlike the others). We always do a candlelit special dinner with red foods. It is fun. Heart shaped homemade pizza. Heart shaped pb&j's in their lunchbox. When I mentioned making heart shaped pancakes for breakfast....Jerad tells me to draw the line. We can't do heart shaped for breakfast, lunch, and dinner. I loved going into school today and seeing all the kids and all the festivities. Must be because I remember loving V-day as a kid (Thanks to my Mom...and my Dad who always got me a heart shaped box of candy)

More than anything, today I was remembering last year. One of the lower points of our journey. Ally was in so much pain last Feb 14th that she couldn't go to school, but wanted to pass out her Valentines. I ended up rolling her into school in a wheelchair. This is how it went:

http://all4ally.blogspot.com/2010/02/valentine-party-day.html

It is not easy to forget the agony of that time. But it is very easy to be grateful for what we have now been blessed with.

My precious kiddo Evan who won this cute Hippo pair in the "claw machine" at a restaurant, but saved the prize for me by hiding it under his bed. He was so proud to have something for me. Guess I will sleep with it! And my sweet girls. I love them.
Jerad has a tradition of writing them each a letter on Valentine's Day. They wanted to read them at dinner. I had to stop them so I wouldn't cry! :)

And the medical update: Ally did fine at chemo. Dr. B was out of town, which rarely happens, so we saw Dr French. We hadn't been treated by him since the last time she was in the hospital, but sometimes it is nice to get a different view on things. He is also a great doctor. So I spoke to him all about the belly pain and the liver numbers....he seemed to think it was all the medications. Dr B had actually ordered her to be tested for a few viral things: Mono, Hepatitis, etc...but Dr French said he would be shocked if it were any of those things. I have yet to hear the results (they take a few days). On a positive note: her blood test numbers were the best I have seen in a long time. Hemoglobin above 12, Platelets above 325, and ANC at 1500. Just perfect. The liver numbers had gone down again, but they are still elevated. They test her AST/ALT and they are supposed to be between 0-45....one of hers is 250. But I believe it was close to 500 last month. Decreasing is good.

The chemo did not slow her down too much. Although having belly pain, she competed in her last swim meet of the winter. Taking another 4 seconds off her freestyle. She also raced in the 50yd backstroke.

Finally, I wanted to share one story from school. The guidance counselor stopped me in the hall the other day and told me that they had been speaking with the kids about courage. She said all the kids were sharing stories about how they had been brave. Some of the stories were somewhat laughable, typical of a 3rd grade student. Then she told me Ally raised her hand to say how she had courage. She just said "Cancer". And then they discussed Ally's bravery. And how Ally was different when she was in that wheelchair. And how people looked at her when she had no hair. And again, all I could do was stand there and cry. No words. Just a brief thank you while I swallowed the lump in my throat and realized yet again how our life will never be the same. The good and the bad. She is a special girl and she makes me proud to be her Mama.

Happy Valentine's Day. Go hug your family!

Ballerina Girl Pictures

2011-02-09T22:31:00.000-05:00

I just wanted to post a quick update on Ally. Her stomach is STILL bothering her. I feel so bad for her. It just hurts and that is that and there is nothing much we can do about it. We try Prevacid, Zofran, Tums, etc but nothing seems to help her. We are going into the hospital on Friday, so I will discuss it again with Dr B. It has been hurting her since her last Spinal Tap on Dec 20th! Almost two months. It has impeded her ability to practice swimming, but I guess I can't get too hung up on that. She actually went on Monday night and did the whole practice! It just depends on the day. Her last meet is this weekend, so I guess we will be done anyway. Kinda excited about getting three nights back a week (from my selfish perspective anyway)

Evan has been playing basketball for the Future Stars. He really likes it. He is a non-aggressive kid, so that doesn't seem to help much, but he really does like it so I guess that is all that counts.

And Carly, well she is my dancer! The absolute highlight of her week is when she gets to go to her Creative Movement class at Bella Rosa Dance Academy. It is only a half hour class, but she just loves it. She knows all of her ballet positions now and tends to show them off around the house. She is constantly doing cheerleading dances for us too! So cute. Now she is working towards her recital which is in June.

I wanted to share one more story of how Ally's journey has changed someone. I have had the same babysitter for years, Jackie. She started babysitting for us when she was in high school. Now she has gone through nursing school and is getting her degree in that. She has done all kinds of clinical studies in different sections of the hospital etc. Well now it is her turn to do one at Dayton Children's. I believe they don't normally let the students on the Hem/Oncology Floor, for good reason, but she pleaded a case for it and told them about Ally. Thankfully, they allowed her to do it and she is now working on the 4th floor. She is meeting all of the nurses that we know and I am positive that she is making those kids happy up there. It is a tough place to work. It is sad. It takes a special person. Many of the nurses up there are deeply religious. I don't think this is a coincidence at all. You have to have a broader view of life to work up there... But anyway, Jackie told us that Ally's plight has led her to do this. Whether it is where she ends up or not....I am just proud of her for trying. Good luck Jackie.

Friday is chemo day. Pray for good counts for Ally yet again and that the liver numbers stay down. I hope her belly pain can be mitigated too. I am thinking that the pain could just be from 20 months of chemotherapy going through her little body. It has to take a toll.

Goodbye January!

2011-02-01T20:02:00.004-05:00

Goodbye January. I am so glad to see you go. Although I may be a bit more "spoiled" or "normal" than I was last January, this January seemed a heck of a lot like 2010 from the perspective that I have barely left the confines of my house! This month alone we have had:

Fevers

Puking

Belly Aches

Ear Infection

And the infamous high Liver levels.

Couple that with three or four snow days (maybe more tomorrow) and I am going batty. I even had my own minor surgery on Friday and followed that with my own minor fever yesterday. Sheesh.

We even had one desperate night of crying and considering a trip to the ER for Evan (that's the ear), but my nurse friend Lara came to my door and his rescue at 11pm at night in the middle of part one of the ice storm. In her PJs. (Gotta love friends like that.)

Just so not fun. I begged Jerad to get rid of my payroll tax/W-2 Filing job that is done from my home at 9pm at night most nights....and get a job that allows me to leave the confines of the house and enter into civilization.

It will all get better. When Spring hits. I just have to persevere as always.

Right before our ice storm hit, I took Ally out to get her liver panels done. I am pleased to say that her numbers are on their way downward. They are still high and still out of normal range, but they are on their way down which is good. They will test her again next week when she goes in for chemo. Her belly pain seems to have subsided. That is until last night when it crept back up on us. Only time will tell.

So we are in the midst of part two of an ice storm now. The newscasters are freaking out that we may lose power at any minute. I would love to be getting all that snow that my college roomies are getting up in Chicagoland, Michigan, and Wisconsin. Play in some snow for me girlies! Here are some icy pictures from today:

Found out we could sled down the driveway....
because the driveway looked like an ice rink:

and pretty soon I could no longer see out my windows. Which may not be such a bad thing.

Weekend Swim Meet

2011-01-24T22:26:00.001-05:00

We have been busy here lately. Ally seems to be getting a little better...at least if I keep track of her complaints about belly pain. She was complaining all of the time, numerous times a day. Now she has mentioned it only once in the last couple of days. Regardless, she will go in Friday to get some liver blood tests done. Bummer for her because they have to take that blood out of her arm. Usually if we are just doing a CBC (which she does ALL the time) they just do a finger prick. She is pretty brave about it though and I am praying for some good numbers to come back.

After struggling a bit with swimming last week, she went to her first "away" meet this weekend down in Middletown. She did FANTASTIC. She took several seconds off both her 50 yd backstroke time and also her 50 free. She had been working on her flip turns with Coach Rob and I think the work paid off. She was EXTRA excited about this meet because both her teacher and her grandparents were coming to watch her race. I think she got 4th in her heat for back and 3rd for freestyle...we are not in it to win any races though. I just tell her to keep improving her time. She has worked really hard on her swimming, and honestly with three days a week of practice she is ready for it to be over. However, I will attest that it could possibly be the best decision that we have made throughout the process because it strengthened her and also helped her to keep her steroid weight down (most of the kids suffer from weight gain):
Here she is doing the freestyle:

Here she is with Grandma and Grandpa: (they also babysat that night so we could go out for Bob Winger's 40th birthday celebration. Thank you!)

And here she is with Mrs. Torbeck. Seriously, how many teachers go to their students swim meets? Ally was super excited and we were super grateful. She is a lucky girl.

We have also been busy working on the science fair, going to birthday parties, and playing in the snow. We are always mindful of how perfect a "regular" schedule can be...never forgetting the lack of schedule that we suffered with for a year. We also had Evan come down with a fever, but thankfully Ally has been spared so far from it. It still necessitates a trip to the hospital for us, so we try really hard to avoid all illnesses. Although I have kinda learned that if she is gonna get it, she will get it, so I don't go too crazy with isolation tactics and/or cleaning.

We have also had some fun playing in the snow. I LOVE SNOW! However I am kinda ready to be done with all of these snow days already. Dad has a big sledding hill up at Fox Hill that we love. Also, wanted to say that Dad is doing much better these days. He is home from Cleveland and has been feeling better. We can only hope that it will stay this way for him.
I think we have almost this same picture from last winter. Setting up a self timer shot in the snow = not easy.

I love this shot of my girl. Snow makes for the most perfect backdrop and light reflector!

One small thing that I failed to mention last week, but it was a huge deal to us! Our WSU Raiders beat the Butler Bulldogs. Remember the Bulldogs who were in the (ahem) National Championship last March?? We beat them. We love the Raiders. They have always supported Ally and she supports them right back. Check out these signs that her and Madison created:

And again, sorry Mrs Torbeck about your Bulldogs. (We've been seeing a lot of her lately.) She was still smiling here because it was halftime.

At the end of the game the students had stormed the court and I had lost my voice.

Fun times.

- Posted using BlogPress from my iPad

Quick Update

2011-01-18T21:55:00.002-05:00

Just a quick update. Dad got the first of his meds last night about 9pm. He got some more 12 hours later. He is probably due again any minute. I wasn't able to talk to him today...they asked for no phone calls/texts so that he would remain calm. I did get a note that his heart is in rhythm. So that is good. Whether it will remain that way or not...only time will tell. It seems encouraging to me, so I will take it.

Ally's pain has moved from her belly to her head. She is really struggling with swimming now, but is keeping at it the best she can. She is a very strong girl all things considered. She actually has another swim meet on Saturday and I know she is excited for that. Her Grandparents are driving down to watch her! I think her head is hurting mostly because she just today finished her five day pulse of steroids that she gets every month. Steroid week is never fun for us. Overall, she is a good girl and does not get into the angry stuff that I often hear and read about. We are lucky to dodge that bullet. She definitely eats more and her cheeks get all red and puffy. I am glad another steroid week is past us.

Thanks to all for the prayers. They are working.

Update on Dad and Ally

2011-01-17T21:22:00.003-05:00

Hope everyone enjoyed MLK day today. And thanks for all the comments on Ally's piano concert. I may have to put more videos out there!

Our MLK day did not go exactly as planned. Dad was due to have his heart ablation surgery today and had driven up to Cleveland yesterday. Long story short, they could not do it because his blood was too thin and it would have been too risky. However, one of the other options, that he previously had dismissed, was using a medicine therapy to get his heart back into rhythm. The reason he dismissed it was because it required a 4-5 day inpatient hospital stay for monitoring as they gave him the medicine (sounds very familar to Ally's methotrexate hospital stays). So anyway, he changed his mind and decided to go ahead and give this a try. So now he is checked in to a nice room at the Cleveland Clinic for the remainder of the week. Barbara and my aunt and uncle are up there with him. I did not go up for the procedure, but now am wishing I was there because I just can't get enough of hospitals in the last three years. No really...wishing I was with my Dad. Lots of prayers are going up for him and I am still not unclear as to whether I will be in Cleveland sometime this week. (And special thank you to my blog reader....Maria...who I don't even know but lived up by the Clinic and offered to help...wow that is a wonderful person.) I keep reminding myself that everything happens for a reason and that this must be part of God's grand plan.

And Ally...well Ally had her chemo on Friday....and IVIG and Pentamadine. We thought we were getting a light day by only being at the hospital for five hours. Five hours to us is like nothing. Her ANC was 1300. Just perfect. We did talk quite a bit about Ally's belly pain that has persisted for over a month now. We could try more miralax or more prevacid...but he also wanted to check her liver numbers again. We thought all was well until we got home and got the word that her liver enzymes are high again. Sigh. Of course, noone knows what this means...and the liver processes everything out of your body so it is just hard to tell the source of the problem. They are running some liver blood tests on her next week to see if they keep climbing. I am just going to pray and keep my fingers crossed that this is just another side effect.

Sometimes I just think that we have to get to the end of her treatment. Next Fall. And then all will be good in the world. And then I step back and take note of all the long term side effects that these medicines can cause her. They are not good. This is why they will be following her for 20 years. The meds saved her life. But they changed her life too. Well this whole thing did.

And at that I will sign off another medical update by asking for continued prayers for both my father and my daughter.

Piano Concerto

2011-01-13T19:13:00.003-05:00

I thought some of Ally's Army might like a little video performance by Ally on her piano. She had asked for years to try it. We started lessons back in September. She has been a quick learner, as she had no experience at all. Her teacher is really wonderful. She goes to the Piano Preparatory School. Ally's Mom is unable to help, but would also like to take lessons at some point. Anyway, I thought some of the family would like a short concert (and also to see her ever-growing-longer-and curlier hair). The piano was actually my Mom and Dad's piano (but they didn't play either) but I feel very blessed to now have it in my home.

We are heading to the clinic tomorrow for chemo. We should be there almost all day with her IVIG infusion and antibiotic infusion also scheduled. Her stomach is a bit better but still hurt pretty much all month. We will discuss with Dr B. Her cough is better thanks to Dr Matt and good old amoxicilian.

Tuesday

2011-01-11T16:49:00.003-05:00

Ally is not feeling so hot these days. Not horrible, we have obviously seen much worse, but her belly has been hurting for a couple weeks now. Off and on. On and off. I can't really peg what/when/why/how it is caused. I was thinking it was drainage from her sinus infection, and I guess it still could be....but she seems to be a bit better as far as that goes. It is the story of our last 20 months. The belly pain is the one constant that we have always had to deal with.

Jerad and I debated taking her down to the clinic today. She has to go Friday anyway (for chemo) so I was hoping we could maybe holdout. Not that I want her to suffer, but also not thinking an answer will suddenly appear and cure her. Her liver numbers were a bit high in December, so I would like them to check those again.

I don't like worrying and I am back to doing it again. As I write this, she is actually outside in the snow! So that is a good sign. But yesterday I had to pick her up from school early because it was hurting her (and that was after I had already taken her a Zofran in the morning)

Dad is heading to the Cleveland Clinic on Monday. He is having a heart abalation surgery done in order to try to help his atrial fibrillation. He should only have to be up there about two days. Of course, I worry about that too and would appreciate any prayers for him. It is eerily similar to what we did exactly 3 years ago. Dad's surgery at Cleve Clinic is Jan 17th. Mom's surgery at Cleveland Clinic (quite possibly the worst day of my life) was exactly three years ago on Jan 18th . I can almost break out into a sweat just by seeing the Cleveland Clinic logo. You think I am exaggerating, but I really don't like it. Too many bad memories. So hoping this time...the Cleveland Clinic can fix one of my parents.

Another week of healthcare stuff is coming. I will just brace myself and keep on.

The Big Easy

2011-01-08T23:05:00.000-05:00

Back in the fall I was at an Eagleseekers charity auction, and on a whim I bought a sports package. Basically, you could attend all kinds of various sporting events (All star games, world series, PGA events, Bowl Games, etc) and they would also book three nights in a nice hotel for you. I wasn't sure I would ever even be able to use the package, but it was for charity and Jerad had told me to "buy something"

Fast forward a few months, and the Buckeyes earned a spot in the Sugar Bowl. Jerad suggested going but I still was wary that it would never work out. Not to mention that it is so much prep work and stress to leave the kids. It's enough work to leave that it makes me question if it is worth it. But.....We did it! And I am so glad we did. We went down to New Orleans for two days and we got to witness one of the best bowl games I have ever seen! We were able to leave the kids thanks to Miss Lisa, Miss Jackie, my sister and my friend Laura who all pulled together to help us work it out. Thank you all so much. Jerad and I were very grateful to have a couple days away.

So two days without kids....we crammed it all in! I am married to Clark Griswold, remember? We walked up and down all the streets of French Quarter, even running straight into the Sugar Bowl parade by accident.

We went to the famous Cafe du Monde for beignets and coffee....wow they were so awesome.

We toured the St Louis Cathedral, went on a historic tour via horse and carriage, toured the Garden District neighborhood filled with old plantation homes, rode on a streetcar, and saw the VERY OLD Lafeyette cemetery where the graves were above ground.

We also relaxed and got massages and ate at some really great restaurants, including Emeril's NOLA. Several times we just sat on a balcony and had drinks for lack of anything else to do. Great people watching in New Orleans. Finally, of course, we also participated in the whole Bourbon Street night scene...trying out the famous Hurricanes at Patti O Brien's outdoor bar and we may have acquired some beads (not having to do anything risque to get them.)

The coolest part was the night before the big game Bourbon Street was like the biggest pep rally on Earth. Everyone was wearing their gear. Time and time again fans would walk by, see our Buckeyes stuff, and say O-H. To which we replied I-O. And the Arkansas fans were constantly breaking out into their wild hog call, which went something like Woooooooo. Pig. Sooie! (while raising hands in the air and wiggling fingers.) Hang on Sloopy was blaring out of all the bars at various times and you could sense some major excitement in the air leading up to the game. People. Were. Into it.

We ran into our friend Stephanie, who granted our Special Wish, down on Bourbon.

The time finally arrived to go to the game. Y'all probably don't know this. But it is customary to wear a feather boa to the games down in N'olans. So, when in Rome:

I got one. Masses of people flooded into the games. Everyone walking! (so different from any game I have ever been to when the traffic backs up) And Ally's Army officially made it to the SuperDome.

Our tickets were supposed to be upper deck, but the group we worked with upgraded us and we were in the corner in the 25th row. Awesome seats! I do have to say I believe the stadium was about 75% Razorbacks and maybe 25% Bucks. Possibly 70/30. Those hogs were loud too. Someone said the state of Arkansas was deserted because the entire population came to the Sugar Bowl. They had a bunch of cool cheers and were honestly so sweet and courteous that I will now be a closet Arkansas fan. They were just glad to be there.

I did get very sick of hearing one cheer throughout the two days: SEC! SEC! Everyone would chant that because the Buckeyes were 0-9 against the SEC in bowl games.

Not anymore baby. The Buckeyes pulled it off. It may not have been pretty. I may have been nervously standing and praying the entire second half. I wanted my investment to pay off and I wanted our trip to end on a good note. When the punt got blocked...UGH. But a sweet interception and the Bucks knee-d it out. They WON. And then the chant started again. SEC! SEC! This time by the scarlet and gray. I will never forget the game. (My husband was proud of me because I watched every play....)

We got the winning score in this picture, but you can't see it probably.
Terrelle Pryor thanking his fans. After the game he apologized to Buckeye Nation.

We did not celebrate on Bourbon Street. We had to get up at 5am the next day because we wanted to be home early for the kiddies. We had a great trip home and got to see their smiling faces. We all survived it without a hitch and for that I am grateful! For some reason, within an hour of being home, we had seen five spills at the kitchen table. I asked Jerad if they were always this loud? Ah, back to reality.

UPDATE on Ally:

Poor girl has been suffering with a cold/cough for about three weeks. It's been infringing on her comfort and her sleep and her swimming. I finally called down to the clinic because it had just been too long. But really, it has nothing to do with her leukemia, it is just a normal childhood illness. So, for the first time in 20 months, we went back to our regular pediatrician for Ally. It was so strange for us, but good. He is a very caring man and they were so kind to let us in the side door and take us at night when there were very few patients there. He diagnosed sinus infection and put her on an oral antibiotic. She has only had a couple days worth but I do think it is working. Friday is chemo day again. The month goes by so fast and before we know it we are back.

If you have read this far, you have made it. Sort of rambling today, but excited to jot down some memories from the Big Easy. Thanks for following our story.

Ice Skating!

2011-01-01T19:44:00.002-05:00

Wow. It is as if I have fallen off the earth as far as my blogging. We have been super busy doing a bunch of holiday things. We are trying to enjoy holiday break as much as possible. We had the most wonderful Christmas this year. Everyone was well and we were HOME! Once you spend a Christmas in the hospital (and we have actually spent 2!) really anything you do for Christmas is just perfect. The kids were beyond thrilled and all the magic of Christmas was truly evident in all three of our children's eyes.

We spent a lot of time with our families and our friends and having parties and watching WSU basketball. But the highlight for my kids (and me!) was the day we decided to go ice skating with our friends. I was hesitant. And I do think Dr Broccoli would NOT have been happy that we took Ally. She is generally more prone to broken bones due to her steroids. But we did it and we held onto her tight and made her go slow! All three kids started out slow (its hard!) but then picked it up and by the end of our 90 minutes there they were doing pretty well. Luckily Jerad and I can both skate so we could hold them up. The cutest thing in the world...and I will honestly never forget this...was Carly. She had these little white skates on that a friend had bought for her a while ago (Thanks Pam). Well she looked adorable but I thought she would be too scared to even go out on the ice. OH CONTRAIRE. She went out. She held onto Jerad or I for quite a while and we would skate her around by holding onto her hands. But eventually she ASKED us to let go of her hands and there she went. Her little three year old body was walking, half-skating around on the ice. She was SUPER proud and was beaming from ear to ear. It was hilarious and cute and again etched in my memory! I could just squeeze her!

I have more pictures, but for now I will post the picture of all of our friends that went (since Nicki emailed it to me!) It was so much fun for me and my kids are begging to go again soon. We will! Check out Car Car's skates! And her new Hello Kitty hat from her Aunt Gail!

Oh yea, Ally made it out of ice skating with no injury. Always a plus. And it makes our lives seem a little more normal. We said a prayer of thanks on our way back to the car.

Happy New Year! 2011 is setting up to be a great year. We have a few trips planned and God willing it will be the end of Ally's chemotherapy regimen. September.

Christmas Eve

2010-12-24T23:55:00.001-05:00

This morning at 6am Ally woke not feeling very well. It was pretty early and her stomach was bothering her. Tears. Later in the morning, after going up to my Dad's for pancakes (which she did not eat) her head started hurting. More tears. This was all followed by me. Panicking. Calling to find out the hours of the blood lab because I do think her counts are going too low. My head started hurting in misery. Visions of Christmas of 2009 were swimming in my head. Why, oh why, could I not just have a worry-free holiday? After taking her temperature multiple times, we gave her some ibuprofen. And it worked. She started perking up midday. And started eating. And showing signs of all her excitement about Christmas. I have never seen her so excited about it really. Maybe two years worth of excitement have brewed up within her.

So Jerad and I started to breathe a little easier. We had a most awesome time up at my Dad's house tonight with all of our family surrounding us. Evan winning the game of pass the pickle and Jerad getting his cool gift of a remote control helicopter. And Evan saying so cutely: Wow, everyone really loves Ally's hair. We got to go to church. All 5 of us together. Me, barely able to eek out a Merry Christmas to our pastor without a lump in my throat and choking back tears for what God has given to us this year. The greatest gift of all which is the restoration of health to our daughter. The gratitude is overfloweth on this day.

Yesterday, some of us cancer Moms took down Christmas dinner to the hospital. We fed the whole Hem/Onc wing and had enough left over to feed the ICU families. I walked down the long corridor, with my offering of food, saying silent prayers as I passed each room and peeked inside to see a little one in a hospital bed at Christmas. I remember it all well. I remember the decorations. I remember being in the room last year and watching other people come. The same little boy that we celebrated Christmas with last year...he was still in there. I remember driving a Christmas tree down to the hospital at 11 pm on Christmas Eve...barely able to see the road through my tears. While my friend Suzanne came and set out my gifts and put things together and even did my dishes. It is a Christmas I will never forget.

But this year, my little ones are upstairs snug in their beds. And Dad is putting together some toys. And cookies are on my mantel. And all is good for now. And Santa has some work to do, so I should really get off my computer. I just wanted to remember this feeling right now. But it is really almost unexplainable, so I will leave it at that.

Merry Christmas to all. And to all a good night......

Believe xmas

2010-12-20T22:21:00.000-05:00

My Christmas Card for this year. I am posting it online again for all those that I may have neglected. The picture???? eh, so so, I definitely have better....but the message is so very clear. I had to use this picture as the Wish was the highlight of our year. Hope everyone is enjoying the week before Christmas!

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Spinal is Done (for three more months)

2010-12-18T15:27:00.002-05:00

I have some excellent news that is worthy of all Christmas wishes combined. Ally's spinal fluid was free and clear of any leukemic cells. Praise to God yet again.

She had a super long day at the hospital 8:30am until 7:30 pm because someone forgot to put the orders in right. Wow that is frustrating enough in itself! She did fairly good with the spinal. She went almost to sleep she was sort of sleeping with her eyes open until he poked her with the big needle and she screamed. Wow I hate that part. She went back into her sleep trance while he drained out three test tubes of fluid (one for hematology lab, one for chemistry, and one extra in case he was suspicious and had to do a flow cytometery on it). Then he put in a double dose of chemo (she gets more now that she is nine...and this is the first spinal since she turned 9!). She didn't yell again until he pulled the big needle back out. It all seems pretty quick, like 15 minutes, and you would think I would be used to it by now, but it is still tough on us. I think the main reason for that is just the fear (FEAR) of recurrence. She doesn't get the heavy hitter chemo like she used to and they only check her fluid every three months. It can just weigh heavily on our hearts leading up to it even though we try to turn it all over to God. So that gives me that much more reason to celebrate when Dr B told us the good news.

Her liver numbers were a bit elevated which was concerning, but Dr B thinks it is just from all the medication she takes. (the daily chemo) Her ANC had dropped all the way down to 990....it was 1350 just a few days before so that scares me that it is falling too quick. But he kept her meds the same. I just do no want that perfect storm to be set up like we had last Christmas when she was in the hospital with a low ANC.

Today was supposed to be our family Christmas with Jerad's family. Today was also supposed to be Carly's dance recital. They were dancing to Rudolph! However, my baby girl came down with a fever about an hour before we had to leave. And that is really just how my luck works! So last year I stayed home from Christmas with Ally....and this year I stay home with Carly. And I am just sad she is missing her dance, but also happy that Ally is getting to go to Christmas and we were blessed with the good results.

I can handle a fever when it is with the child that doesn't require a mandatory trip to the ER. We will just cuddle a little more and watch some Frosty. But I do hope it does not spread to my older girl. I would like to remain far far away from that ER, especially at Christmas. So say a little prayer for Miss Ally if you would!

Special Wish

2010-12-16T22:15:00.002-05:00

Ally and Selena made the cover of the Special Wish Newsletter. I hope you can read it...you might have to double click it to make it better.

For those of you that ask me about my Dad (lots of people) he had his procedure done and he is really doing much better. It was like instant relief for him after they shocked his heart. He actually felt so good he went to Florida for a week, but will now be returning to all of our snow. We had two snow days this week (much to Ally's dismay today because now she is missing all the fun holiday stuff at school)

Please say extra prayers as she has her spinal tap on Friday morning at the hospital, followed by a days worth of chemo and other infusions. We used to do spinal taps almost once a week for a period of time. Now we are every three months. I know one thing...they never get any easier and they are never fun to watch your child going through them. It is stressful, but we can handle it all as long as the results are good. I will try to update on here as soon as we have her spinal fluid results.

Funny Stuff

2010-12-12T20:17:00.005-05:00

So we tried to get a family Christmas picture. All posey posey, which typically is not my style. I even got my manual out for my camera...and learned how to do the self timer. Got the tripod out. We were all prettied up from going to breakfast with Santa (more on that later). and we aren't all prettied up very often. Maybe just once a year actually. But the humor of trying to get the picture with 3 year old Carly really got to me. Frustrating while it was happening, but funny now.

SHOT #1 Oops, Jerad was too late getting in there.
SHOT #2 OH, Carly found an ornament......look

SHOT #3 And, she has now dropped the ornament

SHOT #4 DOH! she dropped it.

SHOT #5 She decides to close her eyes....lovely smile though

SHOT #6 Where in the heck did Carly go?!?

SHOT #7 This will have to be our winner because everyone was DONE.

I just had to share that because Carly is a funny girl. Although most of the time I am closer to crying than laughing with HER!

Also, we had Ally's bloodwork done on Thursday and her ANC has finally dropped down to exactly where they want it. 1350 is her number. PERFECT. 75mg of 6 MP 5x week, 50mg 6 MP 2x week, and 28 mg of methotrexate on Tuesdays. Just for my reference.

We are having fun enjoying the entire month of Christmas this year. We made our Sugar Cookies on Friday, saw Santa on Saturday and also checked out some Christmas lights. Today Ally and I took an awesome Christmas cupcake decorating class at our local cake shop. It was really fun, even though I didn't much have time for it, but we learned a lot and had a blast. I might even have to post pictures of our creations.

Her spinal is this Friday. She will be admitted at 8:30 am. Please pray for her spinal fluid to be clear. This is our only wish for Christmas!

Thanks WSU!

2010-12-07T22:55:00.000-05:00

I have been neglectful about posting something for a while. It has been on my list for a while, but I was kind of waiting to see how things turned out.

Much to my surprise, I opened my mail a few days ago, and there was a check for Ally's Army for $3230.00. The amazing amazing people at Wright State decided to have a fundraising soccer game with Ally being the honoree and benefactor of the event. The wonderful part of this event is that the whole thing was done out of the generosity of their hearts. Noone had to do it for us, but they did. I hope that they trusted Ally's Army would do something worthwhile with the funds they have raised. The Men's soccer coach, Bryan Davis, was the leader of this event with NINE sororities and fraternities who also unanimously voted to make Ally's Army their charity of choice for the Fall quarter. They all did various things to raise money. THE ZTA girls were especially nice to our daughter Ally and came out to paint her nails right before we left for CA. They also made her a Build A Bear, brought us dinner the night of the game, and one AWESOME ZTA, Renai Bowers, spent an entire day making orange Ally's Army ice cream sandwiches for the event. She had never even met Ally. Who does that?? Well, Renai did (and now we love her and she also babysat for us Sat night, thanks Renai). And our friend Dr Bamberger, his son plays soccer for WSU, had an entire wine tasting lunch to support our cause at Jay's Restaurant. Thanks Brent.

We also had a quite a few of our friends and family attend the soccer game. It is so nice for Ally to see that support and we were quite grateful to all who attended.

At this time of the year, when sometimes things are stressful, I must remember that the spirit of the season lives in all of us. I have seen it evidenced over and over and over again by complete strangers.

So now we will pay it forward to two worthy organizations. I am going to split the money and donate it to two organizations near to my heart: A Kid Again (providing events for kids here locally) and A Special Wish, who funded Ally's wish to go to California. I will keep working for these organizations, both somewhat small and both who need our help to continue to better the lives of these sick kids.

Two prayer requests for today. My Dad is going into the hospital tomorrow to hopefully get his heart "shocked" back into rhythm. He has to go under general anethesia for this. He has been miserable for SEVEN weeks while waiting for his blood to get to the right thickness so they could safely do this. Praying praying that it works.

Also, starting to get anxiety about Ally's upcoming spinal tap. It is next Friday (17th). She has a few stray bruises and one weird rash all on her belly. Any little thing like that can heighten my alert and prayers. I just pray for spinal fluid free of all leukemic cells and that we can enjoy this holiday in the peace of our own home.

Another Angel for us.

2010-12-05T23:45:00.002-05:00

Sooooo. Heaven has another angel up there. Grandma Josie passed away on Tuesday morning. After being "asleep" and without any food/water/IV for ten days...she put up a very valiant fight. I can only imagine how strong her heart was. She surprised everybody by holding on so long. We just wished for her peace.

Her Obituary:
http://www.legacy.com/obituaries/erietimesnews/obituary.aspx?n=mary-joan-feisler-dailey-josie&pid=146871978&fhid=8452

Jerad, my sister and I traveled to Pennsylvania for the services. It was quite a sad time for me. Although I have to say the services were absolutely beautiful, just as she would have wanted. My Grandpa was so proud for that. He would just well up with pride and/or sadness and say "Janel, this is just what she wanted. To a tee." He told me that repeatedly. We honored her life with our memories and I enjoyed spending so much time with my Grandpa. I got to hear many more stories about my family that I didn't already know.

Although 91 is a good life -her birthday was the same day as her visitation at the funeral home :(..it doesn't take away the loss. And for me, well, I have this picture sitting on my piano. A photo taken not too long ago. A four generation photo of Ally, Me, Mom and Grandma. And now two of the generations are gone. And I am, GULP, the oldest generation. I am not very fond of that fact.

The good part in all of this is that she is walking with Jesus now. She got to see her daughter again. And I am quite certain that Mom was up their making her birthday cake. I even caught Evan telling his best buddy that Ma had a big birthday present waiting for Grandma Josie. Man, that boy has learned his lessons the hard way. But Heaven to him is a good place. And he is right. It is. So she lives on in happiness and we are only left here to mourn another loss.

The Reverend asked if I would like to speak at my Grandma's service. I did, along with my Uncle Doug. Wow it was hard to speak through tears, but I did it for her. She would have wanted it that way. The best thing I can say about my Grandma is that she always made me feel special. I could do no wrong in her eyes. Not too many people loved me like she did. So I wrote down my thoughts the night before and spoke this at her funeral service:

I have had the privilege of having my grandmother for 38 years. Not too many people can say that. And what a grandmother she was. If you could picture in your mind a perfect "grandmotherly type" it would be my Grandma Josie.

SWEET
LITTLE
HAPPY
LOVING

Any picture that I ever drew for her would bring tears to her eyes. Any gift was the best gift that she ever received. Any meal that was made for her would keep her full for a week.

She had the most pleasant disposition of anyone I've ever known. She always had a smile or a kind word for anyone.
Along with my Grandpa, she taught me how to have a long and happy marriage. I never heard a harsh word come out of her mouth. They were married for 65 years, living in the same house on California Drive for nearly that entire time.
I moved away from Erie when I was 5 years old--much to my grandmother's dismay. So for years we wrote letters back and forth to each other. Upon my graduation, she gave me a book with every letter that I had ever sent to her. She had saved every one and now I have a treasure documenting my life.
Her life was filled with raising three children: Gail, Marcy, and Doug. She was blessed with four granddaughters. And eventually, much to her delight she got to meet 5 great-grandchildren: 3 boys and 2 girls. Visiting with them was a highlight of her days. Thankfully we were all together for one last visit in August just before she fell ill. Her backyard was one of my favorite places on this Earth. I have many memories there and a lot of them involve Grandma and her birds. She always kept clean water in the bird bath and the feeders were filled so her "friends" could come to her house. She was also very diligent about putting a half of an orange hanging out there so the Baltimore Oriole would come. She loved the Orioles.
Her life was not without hard times. She suffered so while watching her son and daughter in law both battle cancer. And god bless her for having to face the unthinkable: She lost her own daughter Marcy (my mom) just about a year and a half ago. And shortly after that her 7 year old great-granddaughter was diagnosed with leukemia.
And all that Grandma could say was why them? "why not me?" In her infinitely unselfish ways she wanted to take their place. Grandma Josie will always have a very special place in my heart. She knew how much I loved her. She knew how much we all loved her.
2 days short of 91 years. She lived a wonderful life and she should be proud. And in her own words, the last words spoken by her to my Aunt, she said "It was all good."

Many of our family did not make the trip in for the services. I promised that I would take pictures. Jerad did the best he could. And I have them all here to see. I am guessing most of you won't want to look at them though because they are sad. But some of the McHenrys/Feislers were not there and some of our family too. So here you go:

Thankful

2010-11-28T21:58:00.000-05:00

Another Thanksgiving has come and gone. And at risk for sounding "un"thankful or ungrateful...I would be lying if I said the holiday was not hard on me. I definitely try to hide any negativity to anyone out there, except maybe Jerad. And I know lots of people would say the exact same thing...that the holidays are hard... and understand exactly how difficult they can be when you have gone through tough times. Those people that generally say "look at the positive" have also generally not experienced much in the way of loss or hard times. So when I hear that I just smile and try to swallow the even bigger lump in my throat.

For me, the Thanksgiving holiday is hard without my Mom. Obviously. She was always the core of the celebration (the cook!) and also gave me much to be thankful for. We always watched the Macy's Day parade together. Every year without fail. So no surprise when I burst into tears when the parade commenced this year. Above all, I have to get past my own issues with sadness and teach my kids the traditions. I did quickly gather myself and forced a happy smile for my kids sake. I really do try very hard....I do not want to wallow in it in front of them and I think I do a decent job at hiding what is in my heart. This year was especially hard on me because my Grandma (my Mom's mom) is dying. Every day for seven days I have been told that it is her last day. She has had no food, no water, no medications (except for comfort) since last Saturday. Every day when the phone rings my heart stops...wondering if her time has come. She is amazing the entire staff at the hospital and all of us too. Her strength is just a miracle. And, since tradition is such a integral part of my family, Grandma laid in her hospital bed, unconcious, but the Macy's Day parade was certainly playing in the background for her to hear. The traditions started with her, went to my Mom, and will continue with me.

So, as Thanksgiving progressed, I kept making myself a list in my head of all the things that I am thankful for. And the list was getting huge. The sadness section of my heart did not overshadow the gratefulness section that also occupies it. They can live side by side! I had wanted to do a local race called the "Turkey Trot" but was unable to do it because we were out of town at Jerad's parents house. BUT... I slapped my Garmin running watch on my wrist, grabbed Jerad, and headed out in the rainy cold to accomplish my goal: 5 Miles. This was not an easy task for me, but I was not stopping until it was done. And that....THAT went right onto my list of things to be thankful for. That my 38 year old body can still travel 5 miles *running* up and down the hills of Junction City in the rain. Because I have learned over the last couple of years, that without health...there is nothing.

I keep reading all of the facebook posts this week regarding things people are thankful for. All good. I am obviously so thankful for my husband and my kids...and mainly that my kids are healthy. Ally is looking and acting amazing. Her strength is inspiring to me. More than anything I am thankful to God...for all that he has given me and nothing short of my faith is what has truly brought me through the past year. We try to honor him in all things that we do.

Here is my short list of things that I am thankful for, at this time, this year:

1) Emmett Broxson, MD My daughter's oncologist who has saved her life and done so in the most caring and respectful way possible. I can honestly say that I have NEVER second-guessed that man, which if you know me....I second guess everything. Not him.
2) My parents. One who has spent a significant part of the past year trying to raise money so that no other poor souls should suffer from this disease. And one who lives in my heart every day and gives me strength to get by. And both who have made me the person I am. I hope I do them right.
3) Childrens Medical Center and all of our caregivers....again, no complaints on anything short of maybe a cafeteria order. Haha. Seriously, my second home and home to many fine people who care about children.
4) Don't laugh at this one, but my personal trainer Kevin. He has been a bit of my "therapist" over the last few years. Exercise has been my stress relief. He inspires me to work hard and keep my health. Any questions on health, see above. If it weren't for him, I would be one fat lazy girl sitting on my couch.
5) Allys Army. So many friends giving so much of their time and resources to help my family. I am so grateful for my very best friends who will take my phone call or take my kids or take me out!! all on a moment's notice. And I am deeply grateful for my long lost friends, who all came out of the woodwork to support me when my daughter got sick. Wow I love that.
6) My blog! Although I started this to keep everyone informed, I now have a very real memoir of our life in 2009 and 2010. A treasure. And maybe, it has also served as therapy for me. I don't know. And 100's of people know my innermost thoughts on life too. I never have to explain things in person!
7) My home. My home is my castle and nothing brings me greater joy than my cozy house on a cold night. More than that, the fact that my family is sleeping under the same roof for most of the year after spending so so many days on a hospital couch. Little things like that, that I used to take for granted, but now I am so grateful for.
8) Special Wish. This year I am very grateful that my family got to travel to California for Ally's Special Wish. A wish that she so deserved. I loved being able to tell her that wishes do come true.

I know that I am forgetting something. I am also thankful for little things like Tim Hortons coffee, my camera, my nice foam pillow, my bird feeders, the NFL, and music!

A few more things that I got to do over the weekend that I am thankful for:

Putting my mom's hand painted ornaments on our "pencil" tree.

My college roommates (all six!) but two of them stopped by while travelling through this weekend. I made brunch!

And spending time with my new niece Maddie and family. I love laid back cute babies like her! And watching my kids love on her is priceless.

I hope everyone had a nice Thanksgiving and also made a mental list of all the things we have to be thankful for this year.

First Swim Meet

2010-11-22T21:09:00.006-05:00

We spent our ENTIRE weekend at Ally's first swim meet. Since it was at our home pool in Beavercreek, I had to work the event and then I also spent much of the day with Ally waiting, getting her ready, and eventually watching her swim her VERY FIRST RACE!

So here is my girl...who had chemo on Thursday..and gets in the pool and races on Saturday and Sunday. Jerad and I were so very proud of her. The first race she did was the 50 meter freestyle. She was in the second heat out of nine or ten. Of course, I get her all in position as she goes through the lines to get to the starting blocks. I had so many butterflies in my stomach. I was worried about her dive off the block....we had been working on this a lot because she is quite scared to do it. I finally had to let her go and just watch from the side of the pool. Jerad and the kids were up in the bleachers. My good friends Karen and Bonnie were there (with their Emma) and they provided me with much needed moral support. I also had my cousins Kevin and Julie to lean on.

But...SHE DID IT. SHE DID IT! She came right off the block, not perfect by any stretch, but progress from where we started a month and a half ago. She swam like crazy to the other end, did a flip turn (again, not perfect, but so proud she flipped) and then headed back to the start. Two lengths of the pool. She was in third place for a while (neck and neck with a couple girls) but then fell back towards the end. She finished in a 1:02. 2 months of work and hours of waiting all culminating in this one race. Of course, I was crying tears of joy and the proudness ran all over me. To consider where we have been....last year at this time she could spend days in her hospital bed. At times so weak she couldn't even walk and we would use a wheelchair.....and now she just sprung off the block. And the crazy thing is: She wasn't even last place. In fact, she had a good time and earned a spot on the free relay for the next day. And her time was second best of the four girls on her relay.

We went over and talked to her coaches. I think they were surprised because she hadn't gone this fast in practice. They didn't know she had it in her. I think his words to her were "you were flying!" No matter what, she is just starting and is not going to be winning any races but her coaches are so encouraging and so positive with her. Yet still always giving her new things to work on. They saw the tears in my eyes....I have to be like no other parent. Just wanting my girl to finish and do her best and get some rehab in the form of exercise in the process.

The whole rest of the day, I swear she walked around with a little smile on her face. Not only were we proud of her, but she was proud of herself. You could just tell that she LOVED it. The whole atmosphere of the meet and she especially liked when Emma "decorated" her for her race. Even that night, as we ate dinner, she was just so happy.

On Sunday she had another race. She did the 50 meter backstroke. I was scared she might possibly get disqualified....I had seen some really good swimmers getting DQd earlier in the day. But she did it again. Not quickly, but she didn't get DQd and again I was so proud she went the whole way without faltering. She finished the race...last in her heat, but not quite last overall. So proud that she did it correctly. Backstroke is a little harder. Someday we will try to race the other two, but not yet!

So now today, Ally isn't feeling so great. I don't think it has anything to do with the swimming, but I do think the chemo has caught up with her. They are trying to lower her counts. Today she had a nasty headache all day. I even tried giving her Tylenol with Codeine, but nothing was making it budge. She has one dose of steroids left too, and that generally makes her feel cruddy. She can't sleep when taking them. So I ended up picking her up from school this morning. I am hoping that it goes away and that we aren't moving towards being sick for our Thanksgiving holiday. Only time will tell.

Today....

2010-11-18T20:58:00.006-05:00

Today started off not so good, got better, then got worse. It started out with me being sick and feeling yuck with a very nasty cold (that keeps me up half the night). When my alarm went off at 6:27 my kind husband told me just to sleep....he would take care of it. Quickly I had visions in my head of what the kids would wear to school if he were in charge?!?, but then a wave of sickness came over me and I agreed to the extra sleep as my head fell back on the pillow. Thanks Jerad. He did okay with the clothes too.

I finally woke at 8:30 with little princess Carly tapping my arm and telling me she couldn't find her baby Bobo that was lost somewhere in her bed. Sure honey, let me just blow my nose and throw up some phlegm and I will be right there.

And today was chemo day for Ally, which meant I had to leave at 10 to go get her at school, and my babysitter was a little off on the time (but we still love you!) so I panicked for a few minutes and then dumped Carly at my sisters. (Thanks Mel) The thing about chemo...you can't call in sick...you have to go...and we did. I hid in the little infusion room all day, knowing full well I had to stay away from the immune compromised kids including my own! I wouldn't touch her or even hold her hand while she got poked. She held onto my elbow to be safe.

And this is where the day got better. Ally got a great report, again, from Dr B. Her ANC is still a bit high (2500) so they are adjusting her meds and she will be getting a little more chemo. They adjusted them last week too, and I do think they are on the way down. It is such a sigh of relief every month when we get those blood results and know that our girl is safe. Dr B was impressed with how well she is walking again, after months and months of foot pain and stiff joints caused by her Vincristin. I attribute most of the progress that she has made to her swim team and he thinks it is the best thing for her. She is building muscle with the buoyancy of the water helping her. We talked about all kids going into maintenance should join a swim team to help with their joints and walking!

And sweet Ally. I watched her getting the needle poked into her chest and she hardly even flinches. The nurse brings her six pills and a syringe full of medicine to "premedicate" her before her real medicine. She says thanks and quietly takes care of all of it on her own. She spent six hours hooked up to the IV pole, getting a BP every 15 minutes, but finds quiet things to do all while her Mom sits in the corner not feeling so hot. And then I see her counting on her fingers and I ask her what she is doing. And she tells me that she only has to do this 10 more times. We pray that is true. Next month, 12/17, she has another spinal tap.

But then the day turned bad again, as I was sitting next to Ally I got a message that one of our family friends is nearing the end of this life. I sat in that little room and prayed. I prayed and prayed for almost an hour and then I heard that he had passed away. And I know his entire family and I know the pain they must be feeling and I am very sad. Frank will be missed by so many.

As if that is not enough, within an hour, I hear that my Grandma is nearing the end of her life. My sweet Grandma Josie...my Mom's mom. She has been battling and battling, but is now in "comfort care" and they are anticipating she won't make it. I am so torn...debating hopping into the car and going to PA to see her, but also wanting to remember her as she was when I last visited in August. She is not awake and I opted to stay here. She has lived a long and good life, but it doesn't make the pain or loss any less. I am sure she would tell me that she wants to go....she wants to go see her daughter and my Mom. There are lots of times I would like to go too. Wish I could just "visit" Heaven once in a while. I can picture it now....Mom must be busy up there getting everything ready for Frank and Grandma.

Tonight I pray for them all.

"Perhaps they are not the stars, but rather openings in Heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy." ~Author Unknown

Legoland

2010-11-14T21:38:00.013-05:00

There is one part of our Special Wish trip that I failed to mention yet. Legoland. I would be remiss if I didn't put our pictures out here since Evan considers it the second best day of his life (first being the day he was born, his words not mine). Evan LOVES legos. I don't even know if I can adequately describe how much he loves them....I guess you would just have to see him at work. If he has a lego project, it is hard to pull him away from it. He pretty much doesn't hear a word I say until it is done. I can totally see why he loves them (I do too!) and I think they are wonderful for his mind and his creativity. I know people will think I am crazy for writing this, but he absolutely got the "Mills" builder mind. He can look at houses in our neighborhood and pick out weird architectural details that noone else would even notice. He can also look at a house from the front and pretty much tell you which rooms are which..so we always joke that Evan will be a builder or an architect. Now he is just getting his practice in.

Here we are going into the park. It is down by San Diego (Carlsbad), so we had to drive about an hour from our hotel to get there.
EVERYTHING in the park is made of Legos. It was truly amazing. They had parts that mimicked lots of US cities...NY, LA, Las Vegas, San Fran, DC

Evan and Ally got to drive real Lego cars around a made up track. They had to abide by rules on their own (stoplights, stop signs, staying on the right, etc) Ally is ready for her license. She has practiced a lot up at her Pa's house on his golf cart.

Scaredy cat Carly (she was scared the whole trip) really loved driving the "little" Lego cars.

The Capitol Building was amazing.

Lots of Star Wars stuff

The rides were fun for Evan and Ally. They had three rollar coasters that were a bit smaller, but they both enjoyed them.

On this ride, you had to pull yourself all the way to the top of the pole and then if you let go your car would drop quickly.

Bob the Builder.

This was a huge elephant made out of legos, but my picture is not so great.

It was "Brick or Treat" there!

Evan (like Clark) also loves maps.

And Carly had to do something "princessy" so she got a unicorn painted on her cheek!

And now......we can add one more place that "Allys Army" has been. We will probably never get back there, but I did hear they are building one about an hour from my Dad's condo in Florida. So we WILL be back.

Allys Army Fundraiser

2010-11-09T21:41:00.004-05:00

My sister in law's friend (also named Janelle) has made these Ally's Army candles for a fundraiser for LLS. She is selling them for $20 each and donating $10 for each one. They are Pumpkin Souffle and 8 oz. If you are interested (Chrismas presents???) you can contact my sister Amanda Stamey [amandaestamey@yahoo.com].

I also thought I would share a family picture that we took a few weeks back. It turned out really nice. Thanks to my friend Nicki for coming up to Fox Hill and taking the shots! I love my beautiful family...we have come a long way together. And how cute is Ally with that short hair and A SCARF?!? Man she is growing up on me.

Which leads me to my Dad....lots of you have been asking, and no he is still not doing any better. It seems that his heart is still out of rhythm and does not seem to be trending the right way at this moment. He still feels lousy and (I Believe) he is still trying to take it easy and limit his activity. I would ask for everyone to keep praying that this heart situation turns around and turns around quickly! I am sure he is sick of feeling sick.

On the contrary, Ally seems to be doing great. I sort of keep waiting for the usual Fall illnesses to hit our family, but we have been fortunate. They increased her at home chemo (again) and we are due back into the hospital on Tuesday. I was especially proud of her after she achieved a wonderful report card and we had a great conference with her teacher too. She works really really hard and quite honestly...she missed A LOT last year. Third grade is not easy. Things the other kids just know, she really didn't know, but has worked hard to catch up. I see her improving and I see her excelling. She continues to make me a proud Momma.

Clemson Weekend

2010-11-07T20:00:00.010-05:00

I have been a slacker blogger lately. So busy. Good busy though. And now this post is primarily going to be about Jerad and I....why? Because I want to remember everything and someday I will make a book of all of this! (and I am sure my loyal blog reader Ms Jenny Garrity would also like to look at my pics!) We just got back hours ago from a weekend in Clemson SC. Our friends moved down there over the summer and we missed them so much that we drove 8 hours to go see them. We had a rare weekend without kids as Grandma and Grandpa had a fun time staying with the kids. (THANK YOU) Ally even got to go see Selena Gomez (the subject of her special wish) in concert up in Columbus.

We had a fun drive through the beautiful Smoky Mountains and even encountered some snowflakes when we were high enough in the mountains. We got to see Brad coach his first game as Clemson Head Coach, which made me very happy. They did great and had a big win. The next day we got to go to a Clemson football game, along with about 80,000 other people. Football is big time down there and we got to do a little tailgating and enjoyed spending time in the quaint small town that is Clemson. More than anything, we just laughed all weekend long and enjoyed catching up...our friends the Boohers also drove down with us. A very nice weekend that will long be remembered in my memory banks.

The drive was amazing...I have vowed to myself to take the kids to the mountains in TN sometime soon.

You might see the snow swirling around us in this picture....

Catching up before the game....

The girls going in to Littlejohn for the first game..

He will kill me for this, but loved seeing his picture on the big screen. So proud! He'll get over it.....I have to post.
And doing the Alma Mater after the big win.

The football game was an amazing sight. 80000 people in one big football stadium. The players run down the hill into the game. And they release all the balloons into the sky. Right after 4 jets sped overhead.
We had so much fun cheering for the Tigers!

Overall...we love our orange.
And getting our Ally's Army shirt pictures everywhere we can!

And now we can say that we love Clemson too....

Thanks Brownells for your awesome southern hospitality and friendship. It was a weekend I will never forget!

Fall Fun!

2010-10-31T22:31:00.000-04:00

The difference between last October and this October has been amazing for my family. Last October was arguably one of the bleakest months that we have lived through. Ally was getting high dose methotrexate chemo, which required that she stay in the hospital for four days at a time. And she got it four times. On top of that, she suffered horribly from mouth sores and was twice put in the hospital for close to a week on a morphine drip. It was awful. And all of the things that normally make my October happy, such as Ally's birthday, Jerad and I's anniversary, my Dad's fall party, and Halloween...well they were all pretty much ruined.

I will never forget the Friday in the clinic, the day before my Dad's party, Ally started with some bad mouth sores. They admitted her to the inpatient unit and I knew there was no way she would be able to go to my Dad's fall party. That was one of the few times that I just lost it in front of everybody (including Ally) and broke down. It was such a huge disappointment to me. My Dad had bent over backwards and got this rock mining operation to come and set up at his party because Ally had seen it somewhere else and thought it was the greatest thing.

Well, last year, I went to the party...with the other kids and friends, etc...but it was very hard. I couldn't even look at the mining thing. So this year, when she walked up to it, and started "mining"....well I just lost it again. And I know you would think I would just be happy. And I was. Happy for her and we have come so far. I know. But the sadness can come back so strong sometimes. One little reminder, and it can practically knock me to my knees again.

Wow, I just noticed that Jerad must have captured me crying in this shot.....hah, such is life.

Treasures beyond compare...

But the happiness was there too. For her and for me. And I could have just sat and watched her play all day. My Dad is nice enough to invite some of my friends (and the kids friends) and Jerad's family...and this year the party was fantastic. The weather was great. The kids went on hayrides and bobbed for apples and got scared in the haunted house. All things that make fall so much fun, wrapped into one event.

So she cheated a little....

I loved this guy....

With her BFF Madison

With her cousins on the hayride:

With her friends....

And Ally even got the extra special pleasure of bottle feeding a baby kangaroo. Pretty cool.

And instead of carving our pumpkins in the hospital this year, like we did last year when she carved a broccoli pumpkin for "Dr Broccoli" we got to carve our pumpkins together. They are finally old enough to do it themselves!

And Ally chose this pattern all herself. It says "SMILE" if you look closely.

Evan did the bats.

Last year we got out of the hospital on the day before trick-or-treat. And Ally still did it then...but this year was better. She dressed up like a nerd. Her brother was Luigi from his Super Mario Video Game. Carly was a Hello Kitty Vampire Witch. We made that up.

And they always go to their great grandma's house...she lives right down the street from me!

So another holiday is here and gone. Tonight I am so very grateful for where we are but still very aware that some kids did spend the holiday in the hospital. I keep praying that we never go down that road again. And my Dad, well he did get to come home from the hospital, but still has to get things in order with his heart. He wasn't feeling too great today, so I am hoping that the doctors help him out when he goes back in tomorrow to get it checked. I know lots of stuff about cancer, but nothing about this! Thanks for keeping everybody in your prayers.

The Beach!

2010-10-28T22:45:00.000-04:00

While in California, we had to make a couple of trips to the beach. They are absolutely beautiful out there. We have been to lots of east coast/Florida beaches, but the best part about California is that you get the beauty of the ocean and also the beauty of the mountains...all in the same view. It is really just a breathtaking sight. But, on the flip side, you can't really swim in the water, even in Southern California, because it is so cold. And the waves are pretty high too. I guess this is why everyone surfs. In wetsuits.

We went to the town of Laguna Beach, which I had seen on TV at some point. We drove up to the cliff, overlooking the beach, and it was quite possibly the most beautiful place I have ever been in my life. Really. I could have sat in the same spot for days.

And the kids all found various treasures on the beach. (nothing as cool as a Longboat Key Sand Dollar, however)

We decided to drive up Highway 1 to Seal Beach. This was my only part of the trip that I asked to do. I was thinking of being in Northern California and how I had seen seals right on the beaches. Ally would love that being that she sleeps with her Bobo seal every stinking night of her life. Well lets just say that Janey (me) is no Clark Griswold and the seals no longer come to Seal Beach. ah ha ha ha ha. I did not do the research. Jerad = not so amused.

On the bright side, I have followed a few fabulous photographers from the area (one being Tara Whitney) and I love their work at the ocean...always with a really cool looking pier in the background. And Seal Beach had the most awesome pier ever, so I was really very happy we went there. And at sunset! I spent forever checking out the pier. It was so cool...check out the depth....
LOVE IT Even got the fam shot in, with my pier.

And let Ally practice taking one of Clark and I......

And one of me with my crazy kids.....

Until we collapsed, and it got caught on camera....

And we ran like crazy up and down that beach because it was so gigantic!!

We are still getting our act back together after the trip. Ally didn't feel so great Monday and Tuesday this week. They had increased her chemo, so it could be that (her counts should be dropping). She may have also just picked up a little bug. She seems better now and is all set to go out trick or treating this year. She is dressing up like a nerd! Wow she is getting old to choose to be that.

Dad had his follow up appointment at OSU and all is well with that. He healed up nicely and the tumor was definitely benign. Quite a scare for us. Now today he is scaring me again. He is back in the hospital with some heart irregularities and I need my army to say more prayers that the doctors figure it out and make him better again. He has not been feeling great for a while now, so maybe this will explain some things. Having only one parent now, I get pretty shook up when anything happens to the only one I still have. Please pray that he gets well soon.......

Some more trip details and pics!

2010-10-24T21:27:00.013-04:00

Back to the blog....I have been so slow in writing and going through all 750 of my pictures. I am behind on putting things out here. I still need to write about the awesome Ally's Army game and my Dad's fall party that we had over the weekend, so that is still to come I did not forget!

But first....

One of the very exciting things about our trip for Ally (and her Dad) was that a beautiful white limo picked us up to take us to the airport in Columbus. We also had one waiting for us in Columbus when we got back at 11:30 pm at night. The kids loved it. Here we are right before we departed:
They really wanted to use the champange glasses in the limo, so here is Carly with some Mountain Dew to celebrate. Since it was a "special wish" I obliged on the POP...way too much.

We stayed at a Disney Hotel called Paradise Pier. We were pretty high, 12th floor, and the view out of our room was an awesome one of the California Adventure Park. This is kind of a cross between Epcot and Universal if you are familiar with the parks in Florida. The kids also loved the hotel, especially the fact that they got their own room, which was connected to ours and that the maids left little gold "goofy" coins on their pillow every night. I loved that we could watch the World of Color fountain/light show from our room every night if we wanted to.

For Carly, she was happiest that she finally got to meet the princesses! She had a little autograph book, which she got them all to sign, and then we got pictures to put in it. Here she is with Ariel, one of her faves.
The park was all decked out for Halloween, which was fun to see. I had never been to a Disney park at this time of year.
For Ally's 9th birthday, we went to a character breakfast and Minnie Mouse brought her a little cake.

Jerad and I decided to give her a camera/videocamera for her birthday this year. We gave it to her at breakfast that day, and she took so many of her own pictures. She wants to do a scrapbook of her own for the trip. OH.....she also got some new glasses which she wore a lot! Here she is playing with the camera:

We all took turns wearing Ally's Army shirts every day. That way we have a picture of Ally's Army in all parts of California where we were. Here is Jerad's day. You can also see behind them the first "upside down" rollar coaster that Ally RODE. Crazy girl. She is so brave and no ride was too scary for her. Um...her Dad took her, not me.

On the contrary, Carly was an absolute scaredy cat most of the time. She did not want to ride anything, so we finally quit trying. The best was when she got scared to ride the tiniest little kiddie train ride and I thought Jerad might give her to another family he was so annoyed. I have at least ten pictures of her covering her ears like this:

Or her eyes like this:

At least she is cute.

Here we all are with Mickey:

Evan really enjoyed this Jedi Training show with all the characters from Star Wars. (This was one of the times Carly was covering her eyes.) Evan was really brave and rode all kinds of big kid rides now too. I guess we are all getting older. He loved it all and was a very good traveller. (It takes a long time to get to California, but they were all just awesome the whole way there and the whole way back).

Evan's favorite part of the trip was when we went to Legoland. I am going to post that next time.

Here is my family getting ready to go on the Small World ride, the happiest cruise on Earth and Carly did make it through that.

But she would have rather been off meeting another princess: Here is Tiana from Princess and the Frog. A New One!

Last, but not least, I must share the picture on the Dumbo ride. You have to ride this no matter how old you are.

Even I rode it at age 37.

We really had a fabulous time at all the Disney Parks. Clark was there to guide us the whole time and make sure we were out the door by 7:15 am. (Thanks Jerad) The kids did great as we didn't even have a stroller! I bet Little Miss Ally was probably walking 3 or 4 miles a day. I would have never thought that was possible, but she has really been building her strength back up. (The swim team has been tremendous in helping her to build back up some muscle.)

And so, that is a very scaled down set of our Disney pictures. Thank you Tara and Bunk for watching the entire slide show in our family room the other day. Hah! I do have to include one more, because I thought it told the story for us quite well:

Hollywood Wish Story (and pictures)!

2010-10-20T22:27:00.001-04:00

I am not even sure where to start, but I want to document our amazing time in Hollywood with Ally's Special Wish.

We rolled into Hollywood, and courtesy of Clark Griswold (Jerad), we had exact directions to drive up through a winding neighborhood to get the closest view of the Hollywood sign. I did call him Clark for pretty much the whole trip. Always up before seven....pushing us all to get ready and get out the door...maps in hand. Ahhhh. You gotta love him for taking control. He drove us all around in our minivan--A Toyota Sienna, which we called our swagger wagon from those hilarious commercials. We would crack up. I do believe it was the only minivan I saw in the entire state of CA. They just don't drive them there. I have no idea why.

Ally's exact wish was to see a taping of the Wizards of Waverly Place. This is a pretty popular show on the Disney channel...and its star, Selena Gomez, is the latest and greatest "it" girl in Hollywood right now. The crazy thing is that we submitted this wish about a year ago, and ever since then her stock has grown exponentially. She now has three top 40 songs, a couple of movies , and the show. She is on every teenage magazine and the preteen stores (Justice) are carrying shirts with her name on them.

As I mentioned before, I knew we were going to the taping (and was told we would be able to see about a half hour of it) but I left everything else a surprise. (for all of us) So we knew to go to Hollywood Center Studios at 1pm and the guard would let us in. The studios were basically a compilation of all these very plain, warehouse looking buildings. Not glamorous at all. Other shows taped there were Sonny with a Chance, Suite Life on Deck, Are you Smarter than a Fifth Grader, Brain Surge....to name a few. We went to Wizards particular studio, and in their warehouse they have built all kinds of sets. The ones you see on the show like the Dragons Lair, the substation, their house, the outdoor NY street, but the sets are all much smaller than you would think and the lighting must make them look great because they were also nothing very special. I thought we might be sitting in a studio audience and watching some filming. But....the studio audience is there on Friday and we were there on Thursday. Part of the surprise was that we were getting our own private day there which was an unbelievable treat for all us. Two production assistants met us at the door and stayed with us all day (Jill and Betty). They were super nice and accomodating and seemed very excited to be making a little girl's wish come true. I don't think they had done anything quite like this. I believe everyone on the set was privy to who we were, and there were tons of people working there, although we never really talked about Ally's disease or a whole lot of medical stuff. The PA's told me that the cast was very excited to MEET us. Again, this was something we were not expecting, so surprise again!

The cast was filming a very beautiful scene on a set that they don't normally use.....it was an angel club. They had built the set just for this episode and it was all white. White floors, white lights, white curtains, white accessories and everyone in the scene wore white. They were even drinking a white liquid. For the first hour, we sat next to the set, where we could hear it, but watched what they were doing on televisions. Then, they took us to their cafeteria for a catered lunch. Everyday all the workers get their lunch brought in. This is so they can eat and get right back to work. They work at least 12 hours a day on taping days. After lunch, they let us explore every single set. We walked around, sat on the furniture, played with the magic props, tried on some wizard robes, and pretended to run the substation. They even let the kids try to find Alex's locker (Selena), which they did and were excited about it. They let us sit in the Wizards directors chairs and we talked to the producer, the director, the lighting woman, etc. We got to see the inner workings of everything even down to looking at the fake steak that they cook on the fake grill with the fake mustard bottles right beside it. It was very cool.

After lunch, came the prime event. The producer came and got us and took us back to Selena's dressing room. She was hanging out in there with Jennifer Stone (Harper on the show) and a few of her friends. Again, tiny little dressing room, but she had made it homey with her own touches. Selena seemed very nice. She is 18 years old! Right away she hugged Ally and Evan and thanked us a few times for coming. Both her and Jennifer signed autographed pictures for the kids. Selena picked Carly up and just started carrying her around on her hip. Carly didn't blink an eye. It was like a totally normal thing to her. I thought it was amazingly cute. She talked to us for a few minutes, and yes, she is just as pretty as you would think she is....big pretty lips I kept noticing! We got pictures and then Ally gave both her and Jennifer an Ally's Army t-shirt. Selena went on an on about how much she loved it and would be wearing it at Halloween because it was orange.

After this, we got to go to the craft services room (any snack you want, icee machine, popcorn machine etc) and then David Henrie (Justin on the show) came back out to see us. He seemed like a really funny guy, nice. He was sort of the class clown of the set. We also gave him a shirt and got autographs, pictures, etc. He was super nice to Evan and Carly too.

After all of this, we got even more of a treat. They let the four of us (not Carly) go down to the actual Angel Club set and sit right behind the huge cameras as the scenes were being taped. Ally LOVED this. It was so interesting to see exactly how many times they have to tape the same few sentences...over and over and over. We watched for a couple of hours. A very cool part that we got to see was when Justin casts a spell on Harper that makes her be able to fly. For this scene, they actually brought in a stunt double that looked just like Harper. They hooked her all up to pulleys, etc and in the scene they raised her up and then yanked her back and forth through the air as if she were flying. She also crashed at the end...and it was just interesting to hear how they do it, etc. The stars would, at times, look over at Ally and give her a little wave, which was nice. And the cameraman by us was super nice and explaining stuff etc.

We found out Selena is 18. Still lives with her parents. (her stepdad had come to the set when we were there). Her real Dad not in the picture since she was little. She drives herself to work. She can now work longer hours, since she turned 18, and her parents no longer have to stay with her. Her BFFs are Taylor Swift, Leighton Meester, and Justin Beiber (whom she likes to go bowling with but would NEVER date because he is only 16). She finished her HS education already with a tutor on the set. And she is from Texas. She played with her iphone a lot, slipped on her UGG boots in between scenes, drank a smoothie from the coffee truck, and did a lot of rehearsing her songs when she appeared bored.

Jerad's lifelong friend, Marc, happens to live about five minutes from the studio. He was super kind to take the afternoon off his work and come along with us. He sat with Carly while the rest of us went down to watch the taping. And Carly made a new friend in him....they had a great time too and were watching us all on the TV screens from the other side. This is the same guy that came to the Walk last year, all the way from LA....and raised $1000 for LLS. Just a great guy.

And Ally....well Ally is not a dramatic, fainting, screaming, kind of girl. It is just not her. She is laid back to the hilt (which Marc quickly pointed out is exactly how Jerad Barnett's child would be, because he is just the same) But the whole entire time she had this glimmer in her eye and smile on her face and she was just soaking it all in. It was HER idea (not ours) and it came true and I could tell she was relishing in it. She didn't want to leave, and they said we could stay all night, but after five hours we headed out. We were profusely thanking everyone for making her wish come true. And Carly asked if Selena could babysit her....

We went back to our studio apartment, at the Renassiance Hotel...a couple of rooms with floor to ceiling windows wrapping around the building. We had a great view of the all the city lights. We all slept well knowing that the wish actually happened. I can't stress enough how many times I thought it might never happen. Even the day before the wish, she started crying at lunch, and I thought for sure she was sick. (she wasn't) I can send myself into a panic very quickly. Thank you God for letting this happen for her without incident.

Sorry this is so long. I have so much I want to remember. Ally is doing well. We had a full full day at the hospital yesterday. Another round of chemo welcomed us home. And an antibiotic infusion. And an immunity infusion. All things to keep her well, but all taking a huge amount of time. She had an allergic reaction last time, so they had to be cautious and slow. She missed school and we closed down the clinic! She is now on the lovely steroids for the next five days. I better go make her midnight snack.

For now, I will close with the link to my pictures. I tried to cut out a lot, but there are still so many pictures. I know a lot of you would like to see them, so I finally have it ready to go.

Click the link to view our Amazing Wish pictures:

http://www.youtube.com/watch?v=yCgbFfz5hVg

Thank you to The Wizards of Waverly Place for a day we will never forget. Thank you Special Wish for making it all come true. We are grateful.

WOW!!!!!

2010-10-17T21:41:00.000-04:00

Wow and whew!! We made it home safe and sound. Little visions of Hollywood are still dancing in our heads, and they will be for a long time. I have a ton **ton** of things to do to get back on track with normal life. I promise I will write a full blog with all the details, mainly on the Special Wish...I just have to get around to it. But I do want to say we had an incredible time. The wish far EXCEEDED all of our expectations, which is hard to do since we have been dreaming this up for over a year.

We made it to:

And we have a new member of our Army: Miss Selena Gomez.
And David Henrie

And Jennifer Stone
And yes, Selena did carry Carly around on her hip!! Carly has NO IDEA that the hottest young star in Hollywood swooped her up. After the taping, she was talking to us at dinner and said she would like Selena to babysit her. ?!? Crazy Carly girl.

Ally's surprise was that she was getting a *Private* viewing of the Wizards of Waverly Place taping. We were there for five hours!! And Ally didn't even want to leave then. And the extra, extra surprise was that she got to meet three of the cast members in person.

I am putting together a slide show of the whole wish! I know quite a few of our followers want to see ALL of the pictures. So I will do that soon...right now I am printing some off for the kids to take to school. I hope to not bore you with too many details, but I never want to forget our amazing time in California!
Here is a few more of us posing on the various sets of Waverly:

They let her try on some wizard gear...
Jerad loves the substation....
And now I will end with my first of 1000 thank yous to Special Wish and The Wizards of Waverly Place for making our girls wish come true!

Special Wish Eve

2010-10-14T01:06:00.005-04:00

It is Special Wish eve for Miss Ally Barnett. She was just tucked into her bed in her own room on the 14th floor of the Hollywood Renaissance hotel, a beautiful 4 diamond hotel. I am sitting in the other half of our suite looking out upon the Hollywood skyline. We are in the corner room and have windows from floor to ceiling. Down below, at the Graumann's Chinese Theater, the red carpet covers the sidewalks as a movie premiered at the theater tonight. I just finished painting Miss A's nails, as we leave about noon tomorrow for the Hollywood Center Studios. We will be viewing about a half hour of the taping of the Wizards of Waverly Place. This is a Disney show featuring Selena Gomez. Ally has always been enthralled with magic and spent many of her sickest days watching this show. Since she decided upon her wish, well over a year ago, Selena Gomez's stock has shot up. She is now the "it" Hollywood girl of choice amongst the younger girls. Hannah Montana is out and Selena Gomez now seems to have the top spot. She has several songs in the top 40 and just released her new album last week. She is in several movies as well and even started her career at a very young age on the show Barney (which I can guarantee you Ally watched).

Apparently, after the taping, there will be a surprise for Ally. There will actually be a surprise for all of us because I wouldn't let anyone fill me in on the details. I wanted to be surprised too. We have waited long enough and I can certainly wait to see what it is. I do hope I can sleep tonight. It seems a bit like Christmas! In my thoughts, as always, is the gratefulness for how far we have come. Not for the Hollywood glamour trip, but for the fact that we have made it through 18 months of chemotherapy and we have a happy now nine year old girl. That was my wish...Mommy's wish. I am eternally grateful that the leukemia is in remission and praying that it always stays that way. I am grateful for all the good that has come my way and the support of so many people who carried us through.

But yes I am glad for the wish coming true too. At times, I feel guilty that we are even doing this, but then I quickly remember that Ally so deserves this. Her wish got her through so many of the bad times. If anyone deserves a day filled with sunshine in Southern California it is her. And Evan. And Carly. They have all been through it. So far we have enjoyed going to Disneyland and another one of their parks called California Adventure (which is kind of a cross between Epcot and Universal). Ally rode her first major roller coaster that goes upside down! She couldn't get enough of the big rides and I have loved watching her (try to) run from one ride to the next. I always chuckle when I see her try to break out into a run....1 because she didn't feel well enough to run for oh so long and 2 she really lacks the muscle tone/coordination to run and looks silly trying. It makes me so happy to see her having fun. We also travelled down closer to San Diego and went to Legoland.....the joy in Evan's eyes the entire day was priceless. He LOVES legos. Ally too. It was a great park. They also really enjoyed the beach. We went to Laguna Beach, which was quite possibly the most beautiful place I have ever been. Up in the mountains, cliffs leading down to the beach, flowers and natural beauty everywhere. I have taken something close to 600 pictures already. I will have to pare them down a little and share on the blog.

I will update more later. For now, I wanted to mention one thing coming up this weekend. Saturday, at Wright State, the men's soccer team will be hosting "Ally's Army" night at their game. I would love if anyone would like to come to the game and welcome Ally home from her wish. The game is against Butler and will be at 7pm Saturday night. The soccer fields are just behind the Nutter Center, down the road a bit. All of the proceeds from the tickets etc will go to Ally's Army...and we will in turn be donating it to a worthy cause. We are hoping some of our army will make the trek to the game and show support to WSU and Ally's Army! We may be jet lagged, but we will be there in our orange!

Praying the Wizards is all I hope it can be for her......