Sunday, February 28, 2010

And so it is March......

Our girl is continuing to do well. She seems strong and spirited. She is laughing and also complaining. All good signs that make me happy. The highlight of her weekend was having two (TWO!) of her friends over last night for a sleepover. Again, we are taking advantage of the good times while we can. Our only current complaint is her lack of eating...she just turned down a chance for chocolate. We will see what she is at "weigh-in" tomorrow morning. She went and did her bloodwork today and we shall see in the morning if her counts are high enough for chemo. I am really hoping they are as I do not like delays. This will be dose 3 of 5 in this phase. She will get Vincristin and Methotrexate on Monday. On Tuesday, she will be faced with the leg shots. This particular combination was really hard on her last time, so I am not anticipating a good week.

We have also crossed another major hurdle that I had long ago created in my mind. Ever since the beginning, I had been dreading the months of January/February. These months are not good for even a typical family, but I was anticipating that they could be horrible for us. These two months are arguably the sickest months of the entire year...and I know of a lot of sickness going on right now. The hospital is bursting at the seams with RSV, bronchitis, pneumonia....everyone I run into (including Jerad!) has a cold or a cough or a sore throat. And here I sit on the evening of February 28th...Ally has not been in-patient since January 8. I am knocking on wood everywhere around me, but I am just so grateful that she has been spared of these illnesses so far. We had a horrible HORRIBLE time in the fall, thru the holidays, etc...we definitely paid our dues, but I just can't even express the feelings I have right now as we sit here comfortably in our own home knowing of all those who are suffering.

Actually, I have been quite the emotional wreck lately as we see all of this sickness going on all around us. It is almost as if we are in a snow globe, looking out, and everyone we know from our cancer family is around us having issues. One of our dearest dearest friends, Maggie, is currently in ICU and fighting off pneumonia and quite literally fighting for her life. As is baby Lincoln...who is also in ICU. Several others are having bad times, and relapses and such. I have YET to hear a good story come around. This child is having heart problems, another having problems with her port site, another with dialysis issues. It goes on and on and on. And Jerad and I are shaken. To the core. Just dropping everything all the time to pray. And pray. And pray for these people. We have to live by Faith, and not by fear. I have a strong faith, I do. But when there is tragedy all around us, all the time....it wrecks havoc on our brains. I need some strength. I need some good news.

I have prayed so many prayers for Maggie today. And Lincoln. If you would do the same. I believe there is power in it. And I am also thinking of my dear friend Lisa, who said goodbye to her father on Friday. And I was able to witness the strong love of a family coming through, even in death. And a little extra prayer for Jerad's Uncle Bill, who is having some heart issues. We love Uncle Bill so much and he is a religious follower of Ally's battle with leukemia.

You can check on Maggie here. Let them know you are thinking of them. It know it helps them through to know that people are out there and praying.
www.maggiebixler.blogspot.com

I am sorry to have made this post a giant prayer request. I am just lost and don't even know what to do anymore. I want the spring to come and the flowers to pop out and everyone to miraculously get better! Unfortunately, I know it won't happen like that (well, hopefully the spring part comes true very soon). When you win the reverse lottery like we did, and become cancer parents, it changes so much of our lives. We just can't look at things in the same way. We can't live our lives without a tinge of worry always creeping in. This is not going to go away in a year or two....we will always have it. We just have to learn how to live with it and deal with the dark days and have hope that good days will come again.

I was thinking that tomorrow, when I walk into that clinic for yet another chemo day, I will ask one of my favorite nurses to give me a good story. One that I can hold onto for while.

Pray for all of them.

Thursday, February 25, 2010

Interim Maintenance, my favorite

I have a good report which always makes me happy. Ally continues to do remarkably well through this phase of chemo. I am thinking that this is my "favorite" phase that we have had so far. Sad to say, but true. In my "before" world, this is how I would have expected chemo to be. Get the chemo, be sick for two or three days, and then move on. That seems to be how this phase is going. The others, not so much.
She has gone to school three days this week and will most likely go tomorrow too. That has to be some sort of record! I knew things were good on Tuesday afternoon. My cousin's wife, Julie, has offered to teach the kids private swim lessons. She came to pick Evan up and Ally wanted to go too. She put her suit on and did the "older kids" lesson and according to Julie she did great. Never tiring. Exercise is so good for her and especially swimming on her joints. It made me very happy.
We have a few more days and then she goes back in on Monday morning for more chemo (Vincristine and an even higher dose of methotrexate)...then Tuesday she has to go back for the PEG leg shots. You may remember that this back-to-back combination sent her straight to a wheelchair last time. So who knows. Oh, and we will be also be there on Thursday when Evan sees the cardiologist. Maybe I can get some sort of parking spot or name badge or something since I am there so much. Although there is really no better place to be because they are saving my daughter's life!
Please say an extra prayer for our baby Lincoln tonight. He is currently in the intensive care unit and I can't get him off my mind. I have been woken up the last two nights in the middle of the night with a strong urge to pray for him. We just spent all afternoon on Friday with him in the clinic, but things change quickly and I am praying for his miracle.

Tuesday, February 23, 2010

Not again.

Well I asked you all to pray for Bill, thinking he had weeks left to live. I had no idea whatsoever that his time was so short. He passed away last night....just hours after I mentioned it on the blog. He was an amazing man and I am so glad to have known him. He was one of those people that was just so full of life that it is hard to imagine him gone. He could fix anything, give you directions to anywhere, tell you anything you wanted to know about fast cars and/or boats....and he loved his family and grandchildren so much and always had a proud look on his face when you talked to him about it. He was too young. I last saw him when I was last in Cleveland...at the Cleveland Clinic with my Mom. My mom was in a crazy 13 hour long surgery to remove her bladder and he just drove down to the hospital and sat with me in the lobby with Lisa...and they helped me pass the time and told me it would all be ok. Well today and everyday I am just sick of cancer. Sick of what it does to so many people that I know. Sick of what it did to my mom. And Bill. Even my Dad had cancer (but survived). My Uncle. My Aunt. And now my daughter. And 100's of other people that I could personally list off right now. Why can't they find a cure? When? Why aren't people up in arms over this? Oh I know. Because they are tired. Of fighting cancer.

On Friday, I am heading to Cleveland to see my friend Lisa. I wish I could take it away from her, but I can't. As is the case with everything, I rely on my one motto that gets me through most days: at least we have each other. Friends and family are what gets us through.

Rest in Peace Captain Bill. I know you are pain free now and enjoying every minute of heaven. There is no speed limit there. We love you.

Monday, February 22, 2010

Blah Monday

Ally continued through the night and most of the day today with belly pain. I really don't know why this happens...I guess just all of the medications. She didn't go to school, but by mid-afternoon it was almost as if a light switch went off and all the sudden she felt better. I knew things were good when I suggested having a tea party with Carly and she went upstairs and dressed about ten of her stuffed animals for the "party". I love that. So much of Ally is adult-like....she has to deal with so many "big things" that I find myself even treating her like an adult half the time. I shouldn't forget that she is eight. So today we happily made all kinds of tea concoctions out of grape juice, apple juice, and cranberry juice. Maybe I got a few calories into her because she is still NOT EATING. I keep threatening her with the appetite stimulant medication, but nothing makes her eat.
We have been furiously working on a project for school for about two weeks now. She is presenting an oral report/poster on Egypt on Wednesday and I think she has had fun with it. She is anxious to go to school tomorrow to hopefully see some other kids present their countries. It is always good when she has something to look forward to. And by this evening, I actually heard her singing in the shower. I know it is a little thing, but I seriously NEVER get tired of the little things anymore. I am so grateful for moments like that.

Tonight I am sad for my college roommate and wonderful friend Lisa. Her mother died of cancer about nine years ago. And now her father is battling a brain tumor and has very little time left. I cannot fathom losing both my parents, not at our age...or really ever. Like me, she also blogs about her experience. And she is a beautiful, beautiful writer. (Her degree was in journalism). Say a prayer for her Dad Bill...and for her. Her blog address is here if you are interested in following along. They could use all the support that they can get.

http://twelvefooters.blogspot.com/

Sunday, February 21, 2010

WSU Weekend (lots of pictures!)

Saturday went really well for us. I was a little worried when Ally was up in the middle of the night with leg pain and belly pain. But she was a real trooper and had such a busy day! She started out the day by making a snow fort in the front yard, going to her brother's basketball game, then had her whole event at Wright State (lots of pictures below), followed up by hanging out with her ENTIRE family from Jerad's side at the hotel Saturday night. Whew. I don't know too many kids who have a schedule like that following a day full of chemo and getting blood!
The Wright State event was very very nice. They planned it out so well...pink balloons and streamers decorating the arena, they made all five of us pink Ally's Army jerseys with our names on the back, the team even wore pink socks and special warm-ups. A section of the arena turned orange for the game...as we had 50 Ally's Army supporters there in their orange t-shirts. Thank you so so much to all of you who took time out of your Saturday afternoon to show support for our girl. Things like this are very encouraging to her and honestly she deserves any encouragement that she can get. She walks a tough line on a lot of days....and sees more pain than anyone should ever have to...so it is always nice when that is recognized and she gets a little boost to keep her pushing forward.

At halftime, Coach Williams presented her with a special signed and decorated ball and dedicated the game to Ally. She also mentioned that the Butler coach is battling breast cancer and asked her to say something to Ally. Which she did by whispering to her "you look much better bald than I ever did" as she walked off the court to talk to her team. You can see in the picture that the ball looks awesome and I know Ally was really happy to show it off to her friends. I really want to thank Bridgette Williams for doing this for Ally...it was all her idea and her work in planning and organizing. We are blessed to have so many people supporting us as we go through this trying time. Even nine months into it....there are still those people who have not forgotten we are in the midst of fighting the fight against leukemia.




t
Ally is right in the middle of this!


Amazingly enough, Jerad's whole family was in town (even his sister and family who live in Florida)...this is really a quite rare occurrence so at Mom/Grandma's request we took next year's Christmas card picture. We were even color coordinated. Thank you to all 24 of them for making it! They stayed at a local hotel and Ally even got in the water to swim, which was nice to see.Sunday was not as good of a day for sweet Ally. I felt bad as she suffered most of the day with belly pain and spent the day on the couch. We were probably partly paying the price for over-doing it on Saturday. And some of it is just those nasty chemotherapy drugs. I know they are saving her, but I hate when they hurt her in the process. I am hoping she starts feeling better again soon. She has lost quite a bit of weight again, and failed to eat much of anything again today.

Thanks for praying for all those fighting cancer and all the families that are right there supporting their loved ones through it. Please pray for strength for all of them.

Friday, February 19, 2010

Note for WSU game

Note: To any of the Army that are attending the WSU Women's Game Saturday at 3pm...they will have tickets reserved for you at the ticket office. Just tell them you are with Ally's Army and I believe you just get in. They also said that anyone is welcome to speak at halftime and offer Ally any encouraging words. I am not sure what that would be exactly, but the offer is out there. Also: Wear your Ally's Army t-shirts!

We had a decent day at the hospital. Ally's bloodwork came back okay such that she was able to get both doses of chemo today. She has to have an ANC above 750 and her liver enzymes have to be in check too...or else they hold it. I was happy that the liver was fine and her ANC was 2400! Wow! This must explain why she has been feeling so good. So, of course, they upped the dose this time and such that the ANC should go lower. We did have to get yet another blood transfusion today as her Hemoglobin was pretty low. I didn't want to have to go back to the hospital next week, so we just took care of it today. Thank you blood donors. I need to add it up, but I bet Ally has used 12-15 bags of blood in the last almost nine months. Barring any unforeseen illness, Ally is off until March 1. 10 days. Hoping the leg/jaw/joint pain stays away this time! Otherwise, Dr B said we could page him over the weekend...so caring, that man. I must mention again that we just love Dr Broxson...and I also love to tell him when Ally is doing good. I think it truly makes him happy.

A funny story about Carly that I must share. She had some pancake syrup somehow matted into her hair and stuck to her neck. I started to brush her hair this morning and caused her all kinds of pain. She busted out crying and then started saying "my port! my port! my port is hurting" She is just two years old and thinks everybody has a port. How unique.

Thanks for all your prayers. Our friend Cory, who was in the horrible car accident 5 weeks ago today, came home today. He is a walking miracle and a testament to the power of prayer in numbers. Thanks to all who said an extra prayer for him. Tonight Ally got to give him a little hug at his fundraiser dinner.

Have a nice weekend. Hoping to have some fun pictures from the game to post soon.

Wednesday, February 17, 2010

Happy Birthday Mom

Ally is still doing really well...and seems very happy these days. She rode the bus both ways today (hasn't done that since maybe Sept/Oct...we had a two hour delay), she played in the snow a bit, did some homework and went to a basketball game. Besides the various medicines she takes and a few bellyaches, she was just like any other kid today. I am loving that her counts are high....but suspecting they will go down after her chemo infusion on Friday afternoon.

Thanks for the thoughts on Evan...they set him up to go to Children's on March 4th. I am still hoping it is nothing to worry about.

Tonight I am already thinking about tomorrow. Tomorrow my dear Mom would have been 61 years old. I am sad that this day is upon me...for some reason I knew it would be one of the rougher days in the "year of firsts" I hope I can hold it together for the kids. I am pretty good about keeping my emotions regarding Ally in check....but when it comes to my Mom I am very poor. Terrible. The kids have seen me cry hundreds of times about it. I am told by some wise people that this is good...that your kids should see your emotions and know how much I loved her. To stifle it would be to lie. I hope to God that is right because I don't know how else to handle it. And I miss her.

I remember last year quite clearly. She was nearing the end of her life (although we didn't know it would be quite so quickly after). She was turning 60. She spent her entire birthday at doctor's offices and also had to go to the hospital to get a blood transfusion. Ironically, this is something that I now do with Ally quite regularly. We were all waiting for her when she got back quite late and we had dinner and cake (she LOVED cake). And all the kids sang to her, but she was a little confused I remember. I actually have a little video of it that I can't bring myself to watch. So much can change in just one small year...I have had more to deal with than I hope I ever have to again in such a short period.

Oh what I would give for just a little more time. So Happy Birthday to my Mom. Somehow I think she is watching me and knows and feels my intense love for her in my heart... hoping to see some little sign of her tomorrow. A little birdie somewhere in the midst of my day....

Tuesday, February 16, 2010

Snowed In

Hello from snowville! We have almost two feet of snow on the ground here. We are a little ready to be done with the white stuff, although snow days to me really aren't that different than any other day with Ally home. (which is a lot of days) Ally has not been to school since last Monday-8 days...but only one of them was missed because she was ill. The rest were snow/holidays. At least she hasn't been missing anything! I do think Evan is ready to have a little more routine to his day. But with the two hour delay tomorrow...this means he is only in school for about an hour and a half. Oh, yea, and they can still cancel.

Speaking of Evan, we are having some medical issues with him now. He has a crazy stomach pain that comes and goes every few months that seems to stump everyone. He has had it for about a year. Maybe twisted bowel or something like that. We would have to do an Upper GI test to figure it out precisely...and then the only fix is surgery. They are not quite ready to go that route yet, and neither am I. But today the poor guy has to have three xrays and a pretty big blood draw out of his arm. We hold our collective breath on the blood draw, because we remember all too well the devastation that it can bring. All was fine with those things, but the Dr did hear some sort of abnormality with his heartbeat. AGGGHHHHH. Something like a murmur, but not an "innocent one" (her words) that we can ignore like Ally has. So now, we are scheduled to see a cardiologist for him. At children's medical center. Oh and he is married to one of our most favorite nurses (and people!)...Miss Sharon in the hematology clinic. Small world.

So I am trying to not get worried...I am sure it will be a minor thing....but just one more thing on top of everything else can really weigh us down. We spend enough, ENOUGH, time down there. I feel like I should get some sort of free pass with my other kids... that they should be perfectly healthy, because one parent can only handle so much. But I know the world does not work like that.

Just a quick reminder: I think we have quite a few people planning on going to that WSU Women's Basketball game on Saturday. They are honoring Ally at the game for her fight against cancer. If you can, wear your Ally's Army t-shirt if you have one. You don't need to buy tickets in advance, you can just get them at the door. I believe the game is at 3pm but will confirm that for you! We would love to see any of our Army there. I hope she is feeling okay after another dose of chemo is given to her on Friday. I pray that this one does not knock her down as much as last week!

Thanks for praying for our girl and all the other little ones that are fighting this disease!!

Sunday, February 14, 2010

Happy Valentine's Day!!

Happy Valentine's Day from all the Barnetts. We are doing much better now. As I suspected, the Vincristin wore off and Ally has gone a full day now without Vicodin. She is also done with using the wheelchair. So this is good news. She has not looked good the past few days...this time you could see it on her face and I wasn't the only one that noticed. Very pale, eyelids drooping, and bloodshot eyes. I was thinking she might need a blood transfusion, but she has perked up today and looks a little better, so I think I will just wait and see at our chemo appointment on Friday. Unfortunately, the vincristin has a cumulative effect and I believe she has it almost every week until June now. I am hoping she will still be able to get around by the end of that time.

She got to enjoy a birthday party this weekend. This is something lots of kids her age do, but she has missed out on quite a few this year. I was so glad she could attend...and it was a cooking/crafting party which is perfect for her. And by tonight she was practicing her ski jumps and such on our Wii fit board...we were doing our own mini Olympics. We LOVE the Olympics! I love the human interest stories....

We also had a really nice Valentines. The kids made handmade ones (the best) and Ally made some really cute ones. Every year they get a heart shaped box of chocolates (just like I always got when I was little). We also always do a candlelight dinner with some sort of red fancy drink. We decided to make homemade heart shaped pizzas which was fun for the kids.
Star Wars Card for Evan
Elmo card and that is also Carly's big girl bed with Hello Kitty on it

The girls making the dough...
You can't resist her chubby cheeks
Turned out pretty good
Our other really big news of the weekend is that Carly spent her first night in her "Hello Kitty" big girl bed. We finally made the plunge. My other kids were in their beds right at age 2. Here is Carly 2 years and 7 months and I finally did it. I knew I should have done it back in the fall, but just couldn't handle it with everything else going on. I needed some sort of stability and a guaranteed nap. But now, she is a big girl, and she has done great. She loves it. Now I must retire my crib and changing table (weep, weep) It was purchased about 9 years ago, when I was pregnant with baby Ally. It is a little sad, indeed, but in the same sense it is nice to move onto another stage in our lives. I just signed her up for preschool in the fall too.
Last, but not least, I am making another plea out here for a couple of friends of ours. Lisa Walk (Ally's principal) and Will Hamilton (Ally's PE teacher) have taken on the huge responsibility of doing the Team in Training 1/2 marathon in honor of Ally this Spring. It will be the "Flying Pig" in Cincinnati. It is a huge time commitment on their part. They have to practice several times a week with the rest of the team...and the weather has been quite snowy around here. All of the money that they raise goes directly to the Leukemia and Lymphoma Society to further research and help all those fighting blood cancers. We are so lucky to have these friends who are willing to go the extra mile (literally) and show Ally and our whole family just how much they care. I would like to help them raise the money for the event, so I am enlisting the Army. If you would consider making a donation, there is a link here to their webpages. They both wrote specifically about how much Ally inspires them everyday on their page:

Mrs Lisa Walk:
http://pages.teamintraining.org/soh/flypig10/valleyprincipal
Mr Will Hamilton:
http://pages.teamintraining.org/soh/flypig10/whamiltykh
You can also send a check to me or to Valley Elementary School, 3601 Jonathon Dr
Beavercreek, OH 45434. It should be made payable to Leukemia and Lymphoma Society.

And thank you to both of them (and you) from the bottom of our hearts. Ally's Army will continue to make a difference....more news soon on some other events coming.

Friday, February 12, 2010

Valentine Party Day

Wow it doesn't take long to go downhill. Two days into this cycle Ally had had two days worth of chemo. In this phase, they do it back-to-back like that. During the night at the beginning of the third day she could no longer sleep. She was having horrible joint pain primarily in her legs, hips, and jaw. She could not get comfortable. Her back was also sore from the spinal tap. Once again, there wasn't too much we could do except try to console her and give some pain medication. It was a long night. By that morning, we realized she really couldn't walk without being in a great deal of pain and tears. Jerad was carrying her 70 pounds around but that is hard.

I was sad because we had three Valentine parties that day for all the kids. I didn't want Ally to miss it. She had spent f.o.r.e.v.e.r making her box/Valentines. For me, Valentines was the best "school holiday" because I loved the mail exchange and sweet treats. I knew she couldn't walk into the school. I was asking her what she wanted me to tell them....have the teacher pass out her Valentines....or wait til she was better and she could pass them out then....and then in a very matter of fact voice she said "I want to go" I was really shocked she wanted to go, but I remembered that I thought the school had a wheelchair. A few phone calls to the school office and they had very nicely set everything up for me with a special back door entrance.

The school nurse told me that she went down to Ally's class and told them she was coming, but in a wheelchair. She said the whole class broke out into an applause and it was quite touching to see. Once we got there, she lasted about a half an hour and then she was done. Done to the point that she cried most of the way home because it hurt. But I was so proud of her for going and trying to make the best of it.

We got my Mom's old wheelchair for her and she used it to get around the house most of the day. I also upped her medicine to some Vicodin and that really seemed to help. By the end of the day, she was feeling well enough that she asked to go to the WSU game and it was pretty simple to wheel her in and wheel her out. Her ANC was high so we decided to try it. Her little friends were sweet and came and sat with her at the game. She made it the whole time!

I do think (hope) that this pain will be only temporary. The vincristin does this to kids joints and we have seen it happen to her before, although never to this point. I think it should go away within a couple of days. And her next scheduled date is not until Friday...a week from now.

Tuesday, February 9, 2010

Day 1, done...day 2 coming up.

After a very long day at the hospital, Ally got home about 6pm. Everything went pretty well....she was a bit tearful during the spinal and yelling that it hurt. But then about two minutes later she asked if they had given her the shot in her back yet. She just doesn't remember. That is some good medicine that makes her forget the whole thing. Wish I could take some sometimes. She pretty much took a nap right after the procedure, which really helped her to stay down and avoid the spinal headache. Dr French actually inverted her (feet higher than her head) to let the chemo go straight to her brain and also to prevent the spinal headaches. I was only there for about half the day and then set off in the snowstorm to collect my other two children. We got six inches of snow while Ally was doing all her stuff. Thanks to my sister for coming thru in a pinch for us and watching Evan.

While we were there, and before her spinal, Ally passed out some Valentines to some of her friends. We went over to the inpatient unit and caught up with a few friends. While we were there, we found out about a little boy Ethan who had ALL four years ago and it has relapsed. I actually think I met him recently at an event. There was also another little girl there...same thing-- ALL relapsed. This bothers me so much I can't even incorporate the words to describe it. It is our biggest fear...if it relapses you have to do all kinds of stuff including a bone marrow transplant and chances of survival go down. So I have had a pit in my stomach all day about all of this. And another one of her friends, Davey, is having a bone marrow to see what is going on with him...which has me worried. What happened to all the good statistics on ALL that we heard about?...it doesn't seem like it is holding true for our hospital family. I guess we just have to keep praying and praying and try not worry. It is ultimately in God's hands and her path is already chosen.

She goes back in tomorrow at 10am for the double shots in the legs. I do not know why they can't do it all in the same day....but there is some research/reason behind it so I do not ask. Whatever they say, we do.

A funny story...Jerad took Ally to a communion meeting at church a couple weeks ago (she gets her first communion in May). Everyone had to go around the room and say someone/something they are thankful for. Most of the kids said the pat answers: Mom, Dad, Grandma, God, etc. But our girl was different. She said she was thankful for her doctors. And yes, that is what I am thankful for too. Our doctors are amazingly smart men who are also very caring and empathetic and also have a love for kids....always joking around with the kids about this or that. I seriously feel like I owe my life to these men...how can you ever express your gratitude to someone like them?

Monday, February 8, 2010

Day 1 of Interim Maintenance.

Ally made her counts today. She had to hit ANC of 750 and she was 760....so just by a teensy tiny bit. So tomorrow is the official start of her "Interim Maintenance" phase and it begins with a dreaded spinal tap. I am so nervous about this after our bad experience last time. But there is nothing I can do to help matters other than be there at the bedside to support my daughter through it. Tomorrow is a bittersweet date for us in a way. If Ally would have been diagnosed with standard risk ALL, she would have been starting the once a month maintenance phase tomorrow. We would have been done with the extremely hard stuff. But our daughter was classified as high risk and also had that MRD number come back higher than they wanted. In turn, we are facing four more months of very intense chemotherapy and eight days in a row of radiation on her head. This is something I never wanted to do, but I am trying to come to terms with it. I am believing she has to do it to prevent the cancer from coming back.

We are also due a big snowstorm tomorrow. I love the snow, but get scared when it comes on days like tomorrow. Unfortunately, there are areas of the world that do not get "snow days" and the hospital is one of them. We are grateful to all the medical staff that brave the elements no matter what...sometimes they even sleep there and then start working again. The importance of the medical care comes first to them, and that is a good thing.

Tomorrow Ally gets a spinal tap. A push of vincristine. A new chemo push of methotrexate. An hour long infusion of her monthly antibiotic. And an hour long infusion of her IVIG immunity booster. It is going to be a very long day. I just hope she continues smiling as she has been doing lately. Smiling is good.

Thanks for praying for our girl.

Sunday, February 7, 2010

Perfect Winter Day

Hello blogger friends and sorry for my lack of posting. I have no excuse except that I took a little break and all is going really well for us. I just tried to entrench myself back into normal life and, as I have mentioned on here countless times, it is so awesome to have normal times with Ally.

Ally is on a delay with her chemo. She was supposed to go in last week to start a new round, but her counts were only 390 and they have to hit 750 to start. I am almost certain she will go in Tuesday, so we have one day of our break left. She gets her counts done in the morning and we shall see. It starts with another spinal and I am soo soo nervous about that since the last one resulted in a week long headache and lots of pain.

Ally has been doing very well. A glimpse of our old girl was definitely back. She got to go to school Thursday and Friday. She got to play with her friends over the weekend and go out to a restaurant. Jerad took the day Saturday and spent it with his friends...they went to UD Xavier and then hopped in the car...drove a few hours to Indianapolis and watched WSU play Butler. This was Jerad's "ideal day" and it was so nice to not have to worry about an impending fever. I also have to give some special thanks to one of our faithful prayer warriors/blog readers who I have never even had the pleasure to meet: Tara Pakosta. Thank you for sending Ally the great card kit. That is right up her alley. Thanks for thinking of us.

But today...TODAY...was one of the nicest days that I have had in a long long long time. It is hard to explain why, and it will sound silly, but somedays are just perfect. I always say "I want this day to be in my heaven" and they are rare when they come about. It started with a lazy and normal morning around our house. We all went to church as a family today. This is really really rare for us. We don't let Ally go because her counts usually aren't high enough. The kids all went to "children's church" so Jerad and I got to have sort of a date at church. And the sermon was on loving God, and trusting God, and having hope which was all good. Pastor Gil is just so inspriring. He can just motivate me to keep on going all on his own.

We then went sledding and snowmobiling up at Fox Hill. We were blessed with about six inches of snow and it is all stuck to the trees in the most beautiful way. This is what I want in my heaven actually....the beauty of the snow. We really don't get too many big snows around here. So the chances were slim that it would hit when our daughter was on a delay and could actually enjoy it!! We are blessed. The hills at "Fox Hill" are extreme and fun and long. And the snowmobile is quite fun to ride around on to see the beauty. Ally even did it (very carefully). It actually felt warm today. We had no wind and the sun peeked out today during the time we were sledding and only that time. I always attribute weather and other things like that to my mom. She was up there today watching down on all her grandkids enjoying her land. And the sun was shining on their faces.

Jer and I then got to do our weekly bootcamp class. Which we love (to hate). And follow that up with a little Superbowl party (just us!) where we decided to be bad and eat our dinner on the floor in front of the TV and a nice warm fire in the fireplace. (Ally's idea). Jerad tried to make it extra fun for the kids by inventing some sort of Superbowl gambling that they could participate in with his poker chips. Leave it to Jerad to teach our kids about gambling...but they loved seeing who could guess the coin toss, first penalty, first run, first score, etc etc. It kept them interested and made it fun.

So again, I overflow with gratefulness. My family was apart all last weekend...and then all day Saturday too...so I was so happy just to have my little family together for the perfect winter day. We appreciate this so much especially knowing some of Ally's friends are having harder days, primarily Lincoln and her friend Amanda who spent over 10 days in the hospital in terrible pain. Our thoughts are always with them, even on the good days when we try to just forget this horrible disease called cancer and all that is has changed in our life.

Here are some pictures of our day. The snow is a natural light reflector and always allows for the truest and most wonderful pictures. I have to post them all to remember my lovely day.

Love this picture of Daddy and his kids....with beauty in the background
She hates sledding, but let me take her picture before she went in and drank hot chocolate with her Pa. (love her ski hat made by my Great Aunt June for Ally when she was little)
Love those snowy trees!




Don't worry, he went slow (when she was on)
Daddy also tried a little snowboarding
This is Jerad hauling me up the hill, after I had walked it about 7 times and was too tired.

Here are also a couple videos. Not riveting, but you can truly see the beauty and the length of the "medium" hill. We skipped the "big" hill today as we didn't want to press our luck!

Ally Snowmobiling

video


Daddy and Evan sledding.
video

Wednesday, February 3, 2010

Special Wish

When Ally was first diagnosed with ALL....well I honestly can hardly remember the first week and everything that occurred. From time to time I will ask my friend Nicki about it (like who had the kids again?!?....or how did I tell you, etc) or I will ask Jerad or my sister. This must be nature's way of blocking out the most awful memory of my life. Which is good. And upon diagnosis, the hemoc team sends people into your hospital room almost hourly to "teach" us everything we need to know about leukemia and support groups and organizations that will help us pay our hospital bills and etc etc. And yet for some reason, I distinctly remember the social worker pulling me across the hall into the lounge on the hemoc floor. She handed me a stack of forms and told me to fill them out so that Allison could get a special wish. I seriously almost started hyperventilating at that moment and I could barely sputter out words to her. " What...what do you mean special wish? She doesn't need a special wish. Isn't that for kids that are dying? My daughter is gonna be fine....no no no" I was seriously almost offended at the prospect. She proceeds to tell me that any child who is facing a "life-threatening" illness is entitled to a special wish. Again I think I uttered something like really, is she qualifying for this??? AHHHHHHHH. And for the 10th time that week I felt like I got punched in the stomach. Again.

I took the forms and filed them away. For months and months....I didn't even look at them. I am not sure why it upset me so....I had seen all those special wish commercials and human interest stories and I just didn't want that to be me and my family. After time, the reality set in and we heard stories about all her hospital friends and their "special wish" AND I started realizing that Ally did deserve a special wish. Someone told me that she deserved to have a wish to look forward to and to help her get through the treatment. A light at the end of the tunnel. And that is very true...but again, I was stubborn and I didn't want to take funds from a charitable organization when in reality I didn't need the funds. I didn't want to be a receiver of charity...when in reality we are givers. We would gladly pay to take her on a trip when this is all said and done.

Well, I have finally come to terms with the whole thing...a full eight months later I finally turned in the forms. I wrote them a long letter explaining all of this. They are an awesome organization, and I want them to be involved in facilitating and planning her trip. They can do so much more than I could ever do. Ally has chosen a very unique wish...most of the kids just want to go to Disney World. I don't have full details of what her wish entails, but I will share them when we do. Most of it revolves around going to Hollywood California and seeing a taping of her favorite show: The Wizards of Waverly Place. The people at the foundation called me yesterday and told me that her wish went in front of their Board and was approved!!! So now they just have to contact the correct people in Hollywood and try to create some magic for Ally. And this is something that I could never do for her. Again, I am so so so so grateful to all of these people who make it their job to make these wishes come true for so many kids.

So stay tuned....I am anxious to find out when and how this will all occur. But Ally is more than excited about the whole thing. She so deserves the full glory of all her wishes coming true. And this will be the light at the end of the tunnel for her. We will look forward to it on all those days that are not so fun....and I believe one is coming again next Tuesday. And Wednesday. Until then, we will continue to live in and cherish the moment we are in!

Tuesday, February 2, 2010

Please Pray

I landed back into the cold (but sunny!) Ohio about 3pm on Monday. It was good to be back AND I had a wonderful trip. It was nice spending time with my family...my original family of my Dad and my sister. Although the weather was not great (the sun did shine down for about 2 hours on Sunday and I pretty much froze while trying to sit out in it) we just had a really nice time. Shopping, organizing, planning, thinking...trying to make Dad's new place a home for us all to relax in. Oh how I wish I could take my family there, but not yet...we will have to proceed through the remainder of Ally's intense treatment before we can attempt to do that. If prayers are answered, we will all be down there in due time putting our little toes in the ocean. I pray for the day that my girl can wade out into that ocean and find a sand dollar on her own. The ocean is a wonderful place to sit and pray, by the way. Lots of prayers were spilled into the ocean water by me on behalf of our girl Ally and our friend's boy Cory. (who is doing remarkably better by the way).

I arrived home to quite a miracle I must say. There were several welcome home signs/card/ gifts...my husband was making dinner (the only thing he knows how to make: Chili, but still!), my house was totally picked up and they told me they had a surprise for me. Ally led me to the garage where they opened up the door to my car. It was CLEAN. (cue: angels signing) They spent three hours vacuuming, cleaning and scrubbing...my disaster of a car. It was truly a terrible mess and a definite sign that this Mom really does fly by the seat of her pants all the time. So that was just AWESOME. (I think I owe some thanks to Kopil too) Not only did my husband stay with the kids for me, but he did lots of little projects around the house for me and even laundry too! I know! I know! It doesn't get much better than that.

I also owe my sincerest thanks to three people who watched my kids while my husband went to work on Friday and Monday: Suzanne Duplain (thank you also for the dinner you left for Jerad/kids), Lisa Wygant, and Jackie Yount. I could never have gone to Florida without a little help from my friends and someday I hope to repay the favor!

I did come home to the reality that Ally's ANC number was not good enough for her to start the new phase of treatment this week. This is normal and expected, but I always hate delays. She was 390 and had to be 750. So she has the week off, and she is feeling really good. However, I did receive word (thank you Tracy) that the school is pretty darn sick this week...so I am holding Ally home a few days. She has enough to deal with and I know she will catch anything that flys by. We still do tutoring and then she pretty much job shadows me all day, which can get really tiring for me, but what can I do. I do think the girl could pretty much raise a family at age 8...she can cook, clean, do laundry, follow recipes, put away groceries, lay her sister down for a nap, you name it and I have taught her. I guess this is the school of life and I am her teacher.

I have mentioned on here several times my hospital family. And my hospital family is very dear to my heart. Another of our family, Hollie, was mentioning that we are kind of like a military family...we all have to stick together and rely on each other and fight the battles together...whether they are good or bad, we are just together. We have similar heavy hearts and tired faces and prayerful hands. We follow each other's stories every single day, thru the blogs, even if we don't see each other...we are there in spirit. So today my heart is very heavy...as the youngest member of our family, Lincoln, is possibly facing the last moments of his short life. He has seen more trials in his one year of life than most will ever see. He is a sweet baby boy...who we first heard about when the St Luke's moms held a lemonade stand last summer for Ally and Lincoln. We have spent many a day in the hospital right by him with Ally trying to make him giggle from his hospital crib. Today I am praying for a miracle for our baby Lincoln. He deserves a miracle and then some. Please pray.

Monday, February 1, 2010

What Time is It?

Not sure where the day went, but I did want to post some pictures from the WSU game on Saturday. Ally was quite the rockstar thanks to the presence of orange on the floor. Everyone was wondering what "Ally's Army" was, who was Ally, why were the players wearing it? Too bad the local media didn't pick up on it because I have to say it was a pretty amazing thing that the team did for Ally. I was expecting to see them run out onto the floor in their Ally's Army shirts and then that would be it, but they wore them the entire game. And most of you know how bright orange the shirts are, so YOU COULDN'T MISS THEM! They even somehow got long sleeve shirts because that's what their typical warm-up shirt is.

Coming out of the locker room.

As they run out onto the floor for warmupsLayup line is a sea of orangeWSU player introductionsOn the bench still showing their support for Ally's Army
Our gang with "the Wolf" in our impromptu Ally's Army section (thanks BG!). Note that Carly is nowhere to be found as she is DEATHLY afraid of the Wolf. He was nice enough to come up for a picture moments after I had assured Carly that there was no way possible the Wolf could get to our section. I'm not sure she has forgiven me yet.
Ally had the entire team sign her shirt after the game. Here she is with one of her (or is it her Mom's?) favorite players, Vaughn Duggins.
Couldn't quite get the color right on this one, but here's our rockstar with her boys
Our good friend Brad who we can't thank enough for a great day for Ally. For every missed Christmas or party or other everyday event that the poor girl seems to miss out on, there are days like Saturday where people go out of their way to make her feel more than special. I'm so thankful she felt good enough to experience and enjoy the day.
Three of my favorite members of the Army. I have to give Evan and Carly both credit that they never seem jealous of all of the attention their sister gets.
There is also another picture I'll have to have Janel add at another date of Ally out on the floor with a lady who does various basketball tricks including spinning multiple basketballs. She had Ally hold a pen in each hand and spun a ball on each pen while Ally held them up. Very cool and very heavy according to Ally!

Our day actually started with an earlier game, Evan's first official basketball game this season. He played hounding defense but alas neither scored nor got a rebound. Don't worry, we came home and practiced outside in the 20 degree weather so I'm sure he'll get a double double next game. Ally was extremely excited to run the scoreboard and, as you can see in the picture below, always has Tim Horton's on hand just like her mother.

Evan's in the foreground in blue clearly doing all he can for the rebound.
Ally (with a little help from Joshua) running the scoreboard
We had a great weekend even without Mom but we are definitely ready to have her back!