Monday, June 8, 2009

Another decent day

We really had another decent day today. Our girl was still very tired, but she wasn't in pain until this evening. Jerad went back to work today, after being off work for a week and a half. That was slightly scary for me (I can't carry the 75 pound girl around like he does) but I managed. He even came home at lunch and drove us to the outpatient center for Ally's blood test. They wanted to test her blood today because they are thinking she may need a transfusion of platelets before her procedure on Friday.

She doesn't usually get up in the morning until about 10 am. Today, she finally started eating again. We had been struggling with that. They kept telling me when the steriods she is taking kicked in that she would eat us out of house and home. Up at 4 am to eat, etc. Another fact is that she won't like the foods she normally used to like and she will also eat other ones. Today that proved to be true when she asked for eggs when she woke up. I made her one with a slice of melted cheese. Then she asked for another one (What?!) so I made that. Oh yea, then Evan wanted one too. So I was making eggs for about 20 minutes. She also ate a big bowl of strawberries and 2 glasses of OJ. This made her Mama Bear quite happy. She absolutely loved the dinner that the Finn's made her tonight too. Roast beef, mashed potatoes, bread, pineapple. She loved it all.

Which brings me to the food wagon. I am completely humbled by this. My friend Suzanne (one of the family of 13 I mentioned before) is organizing meals for us. She tells me I have enough people wanting to make food that I am covered until sometime in July. I don't even know some of these people!! She is half afraid that people will be angry that they can't make something for another month still. So thank you, thank you, thank really all I can say. I can't get to the grocery store too easily right now. Ally can't go because of the germs and risk of infection. (Plus, I really don't want to leave her.) I also don't have a heck of a lot of time for cooking while trying to keep up with everything else. But a warm dinner brings us all together for at least 20 minutes and it truly does help us. I still can't believe the kindness that people are sharing with us. Ally's army...marching...marching...

I spoke to the nurse this morning about Ally's lack of wanting to do anything. She told me I need to be pushing Miss A a little more. I don't really know where to draw the line of feeling sorry for her/letting her hang out and then being a Mom and telling her to do something already. So today I pushed a little extra. Her little friends/classmates came over and we did about 45 minutes of crafts. Later another friend came over and played about a half hour of Uno. I took her outside and gave her a manicure. Just little things. But baby steps towards doing more.

Diagnosis Day Continued

So after our complete meltdown, I vaguely remember the day, but we tried to explain to Ally what was going on. We didn't go into much detail at this point. But the doctors find it necessary to present everything to us right in front of her. They say it is good for her to listen and maybe pick up a little of it. They want her to ask questions later. After those three or four hours passed, Dr Broxson came into the room with a few of his assistants. He is just an awesome guy. He has this crazy ability of putting us at ease about the situation. He is from the South and has a great accent, very similar, I kept thinking, to our friend Brad Brownell. How anyone can put us at ease with this horrific situation, I do not know. I will just call it a gift from God. He was writing on giant poster size post-it notes and sticking them all over her walls. And he is smiling as he hands us this flow chart with about 100 boxes on it. He explains that Ally does have the ALL version...and he breaks it down further and says that hers is the Pre-B Cell type. I don't know much, but again I know that this the "good" one of the two it could be. Then he tells us that she is in the "high-risk" group because when her disease presented her white blood cells were over 50,000. Normal for you and I is 4,000-12,000. Ally's were 92,000. I did not much like hearing that she was at high risk for anything. But that is where she fell and they would adjust her treatment plan accordingly.

So the flow chart is a means to explain to us the research study that he would like to place her into. She would receive the standard protocol for treating this form of leukemia, but if we chose to put her in the study, then she would get some additional drugs, namely a version of a steriod and another version of methotrexate (a chemo drug). They would put her into a randomization on the computer and we would just get what we get. No choice. He explained that these studies are how leukemia has such a high cure rate today. Kids have always done these. If Ally was diagnosed with ALL in the '60's, she would have been gone in two months. Now, the cure rate was around 80%. He told us that being a girl gives her slightly better odds than that. Girls are stronger fighters than boys and respond better to the treatment. Girls go for 27 months of chemo. Boys have to do 36! He told us if it were his child, he would enroll her in the research study. So we did. Another interesting fact was that the entire country (all 60 pediatric hospitals, with the exception of maybe two) follows the exact same protocol for this. The exact meds on the exact same days. Always. It would be no different if we took her to Cincy or Columbus or Texas. They all work together to give the kids the best. Only about 2000 kids in the whole country get diagnosed every year. I couldn't believe how small that number was. At Dayton Children's they only get about 20 new cases in a whole year. I was just completely shocked by how small those numbers were. I feel like I had heard a lot about leukemia, people fighting for it, walking for it, contributing to it, etc, so I was shocked it was for such a small number of kids. But I think that's just one wants it to be affecting the kids. So they fight against it.

More later.... I seem to have way too much information that I want to get down here.


  1. You didn't tell me that she also got up at 4 a.m. to eat! I'd say that means her appetite is back, way back. Tell Ally I got her nacho cheese and chips at the store for her!
    Boy I also didn't know that boys have a longer protocol. Interesting to know some of those things. Lots of information, but all good information for everyone in Ally's Army to learn and know!

  2. Looks like Ally is having a great time with her friends. Glad to see her moving around more today. Love to all of you...Grandma Barnett.

  3. Janel, we're ready to enlist two more soldiers in Ally's Army...Sofia and Abigail! They can't cook or do crafts, but they sure can bring a smile to her face!

  4. Love the picture of Ally w/her friends. She looks happy. I love that she wanted an egg...and that Evan did too! How cute. Stay strong, dearest, God is with you!

  5. reading this everyday - so glad you are posting - for you and for all of us. Keeping you in heart and prayers daily!

  6. Thanks for the updates, Janel. We're here if you need anything. Praying with you for a complete recovery!