Sunday, April 10, 2011

Update from our Clinic Appointment

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

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

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

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

Ally had decadron. Praising God for this.

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

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

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

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

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

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


  1. Janel, Ally and your family is always in our positive thoughts and prayers. Praise God she was given the two higher survival rate choices! K had 28 days of Decadron but she had the Capizzi Methotrexate which caused her stroke like seizure and placed her in ICU. Now I'm a little worried, but I often am that. Sending prayers about Ally's ANC. Hugs, Michelle

  2. love starting my morning with her smiling face! You of course have my prayers for Ally, it will all be okay, look at how well it's gone so far. You have done the best job, and have had the best of divine Providence looking out for her.
    Take care my sweet !

  3. Ally is always in our prayers, even when she is doing well and the world seems right, but certainly more when there is a scare or if she is not feeling well. Going through what you have already, it would be impossible not to worry. Try to take a deep breath and hang in there -- and if necessary, go back to taking things one day or one hour at a time. I will continue to pray for her health and your family and now I will pray that her numbers drop back to where they are supposed to be and that the waiting is not too excrutiating. I am relieved that she received both of the better drugs and is getting the best treatment that she can possibly have.
    All our love and all our prayers. ALWAYS.
    Shelly Bohman

  4. Saying "Don't worry" to the mother of a child with cancer is a waste of breath, but don't worry in excess. I will keep Ally and your family in my prayers as always.

  5. Hang in there. Like everyone before has said, don't worry is not possible. But try to keep your chins up- keep smiling, and hang in there. I'm sure there is a not-scary or bad reason that her ANC is elevated. I have faith that it'll be more normal in two weeks. Glad the random drug selection worked out for the best. So glad. Hang in there. Ally's Army won't ever stop sending strong thoughts, peace, and prayers.

  6. Janelly - I had no idea. I will be praying extra hard for our dear girl. I can't imagine how worrying this is, but trust what the doctors say. I know it's probably always nagging at her to Lord, minute by minute, every day. Ally is a hero...and so are you. Love you all.

  7. Janel, even though we don't see each other often...ALL of you are always on my mind! I will not stop praying for Ally. Please know that all of us mothers are worrying with you and support each and every concern that you have to face. No matter how little or how big, you are her mother and we all are here for you!!! Each and every member of Ally's Army think of her every single time we look down at our wrist "or ankle...Julie Hocker :-)" and we will just add a few extra prayers until you say it is all clear. Thanks for keeping us upated! Hugs, Jenny Black

  8. Prayers for your sweet girl and her mama. So thankful Ally received the "better" treatment.


  9. The Army is here and in full force and it always will be. So very glad that Ally received the best possible treatments even though they were very difficult. As a mom we have the right to worry no matter what anyone says, but I am sure that in two weeks all will be well and back to normal. Her body is probably fighting off something and it will be fine. I will surely keep all of you in my thoughts and prayers as I do everyday. One day at a time, hang in there. You are doing great!!

  10. Prayers continued for the Amazing Ally! That is such encouraging news about Ally's role in the studies. God is watching her, Janel.