Wednesday, December 28, 2011

Surgery Day

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. 
 

- Posted using BlogPress from my iPhone

Tuesday, December 27, 2011

Port Removal Surgery Dec 28

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.  

Monday, December 12, 2011

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


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. 

Monday, November 28, 2011

Thankful

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.


Thursday, November 17, 2011

K99.1 Radiothon

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...

video

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.

Tuesday, November 8, 2011

Special Video

video

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.

Thursday, October 27, 2011

Surprise Vacation Pictures

 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!

Wednesday, October 19, 2011

Appt update.

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.

Monday, October 17, 2011

Jittery

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.

Sunday, October 9, 2011

Another surprise!

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)










Sunday, October 2, 2011

Light the Night Walk 2011

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.

Tuesday, September 27, 2011

Together again



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:







Monday, September 19, 2011

843 days

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.







Thursday, September 15, 2011

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!

Sunday, September 11, 2011

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

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!

Tuesday, September 6, 2011

Last Steroid

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)






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.

Sunday, August 28, 2011

Blessed Time

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.

Monday, August 22, 2011

TJ Chumps Rally for Ally

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!)

Friday, August 19, 2011

Last Friday of Summer

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!


Tuesday, August 9, 2011

Back From Florida

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.