Monday, June 22, 2009

Summer Solstice-Longest Day of 2009

Today went as well as can be expected for our girl. She pretty much lays around most of the day. I tried to convince her to go to the pool and just sit on the side (she is allowed to swim, but she wouldn't have the energy). This brought big tears from her, so I dropped it. However, the other kids really did want to go, which is my constant dilemma of trying not to short-change anyone. Thankfully, my friend Suzanne and her daughter, Ally's BFF, Madison came over and sat with her for an hour while I took the other two to the pool. Thank you! Anyway, Suzy said she got real chatty and did really well with them. They painted nails and had a nice time. I am finding that she does better for other people and when I am not around. I think she may push herself a bit more.

Again, we tried to get her to go outside this evening...and again more tears. But, once she got outside she did fine. She had a big Uno match in the front yard and then we all about fell off of our chairs when she got up and started hunting for lightning bugs. All on her own. See to most people, this is just normal. But to us, it is a big deal. (And, I thought it was pretty cool that we were out doing this kinda late on the longest day of 2009. I have always loved that day.) It is almost as if we have a baby again, and wow she is hunting for lightning bugs for the very first time. It even caused us to run in the house and whip out the video camera. So, since everyone really enjoyed the other video that I put out there (lots of people far away like to see her) I have posted another one. Note to watchers, you will be surprised at the bald spots appearing on Ally's head. I guess that is all part of it, but I do think it is disturbing. Even to me. We are going to get it cut very short, but honestly, it will probably be gone in a week. It just irritates her now, so she wants it short.
video

Ally only cried of stomach pain a handful of times again. It is not gone, and she still feels like crap, but it is much better. I am hoping that the little antibiotic switch-off that Dr. Broxson did is making a difference. And, of course, your prayers. So our next hurdle is going to be on Friday. Day 28. Throughout everything we have learned, they keep focusing on this Day 28. She is going to have another bone marrow and spinal tap on this day, Friday. This time they will send the marrow all the way to Johns Hopkins in Baltimore for very extensive testing on the amount of leukemia remaining after four weeks of chemotherapy. They are looking for minimal residual disease (MRD) and this test is 1,000 times more sensitive than the last test they did. They are looking for microscopic amounts of the disease. If they find more than .01% we follow one path (more extensive treatment) but they/we are hoping to find less than .01% and then we follow the 27-month plan that I outlined before. Whew. I can't believe that the good option is 27 months long. But it is. And I think at that point they will give us the word that we keep waiting to hear: REMISSION

Keep the prayers coming for her MRD to be less than .01%. No stomach pain. And sleep.

7 comments:

  1. It is great to see Ally outside!! We are so glad the stomach pain is better...I'll finally sleep better tonight. Love to all of you. Grandma and Grandpa Barnett

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  2. Michelle KlinglerJune 23, 2009 at 12:45 AM

    It is so great to see Ally outside and having fun! By the way, Jerad did a great job on his blog. What a wonderful Dad!
    I'm sure that the doctors have thought of this but there is a medication for nausea that is called Zofran. I have no idea if it is safe for children being that I am not a doctor. However, it is a medication that I have been taking since I have been pregnant that my doctor said is usually given to chemotherapy patients but is effective and safe during pregnancy. I thought it would be worth mentioning since it is literally the only way I was able to get out of bed for about 15 weeks. Before that I pretty much stayed in bed.
    Anyways, we are continuing to pray and by the sound of everyone asking about Ally at the golf outing, we are not the only ones. Everyone was talking about how proud they are of her and your whole family. It is truely inspiring to hear about how brave she has been.
    Lots of love and prayers!
    Michelle and Nate

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  3. There is nothing like nature to keep a kid engaged. I think Ally looks beautiful and her spirit shines through -- hair or no hair. Thanks for sharing the video. Big prayers coming your way for good news on Friday. Love you guys!

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  4. Janel,
    A few notes: yeah for Idol Hour! I grew up wanted to beat them every year at every oportunity, but I'm thankful for their efforts and support.
    I'm also thankful for Jerad's post. I don't know him, but am sure his is the perfect support for all of you. Happy Father's Day, Jerad!
    And third- I know that I still want to cry when I have to do something that I'm scared to do, even if it is a minor thing. I also know that I've never experienced anything like you all are living with now. But maybe she's just scared of doing things she's done before because she knows they won't be and aren't the same as before. I don't know, just a thought. I believe Friday will be a successful day. I believe.

    P.S. I miss lightning bugs. Do you think we could import some to Brooklyn?

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  5. Am following everyday - loved Jerad's post and him for doing it. Many, many prayers coming Ally's way for the best numbers ever on Friday, and for no tummy aches, and for SLEEP for all of you.

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  6. Loved the video, brings back great memories of all the kids chasing lightening bugs in their jammies at your parents' lake house. Hard to believe it's been 5 years! So great to see Ally doing 'kid things'. We'll be praying and praying for that number on Friday, and of course for no stomach aches. Much love!

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  7. Janel: What a beautiful blog. We have been checking it regularly but have not signed up until now. We are proud members of Ally's Army. I know there are so many in her Army praying for all of you. First and foremost, we are praying for a complete remission for Ally; secondly, we are praying for the enitre family to have strength, hope, patience and faith to see you through this journey. We love you all. Grandma & Grandpa Booher

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