Apologies for the radio silence... I took a week off from updates and then we had problems with our internet connections.
Take away the chemo, steroids, nausea, fatigue, and missed school days... and you are left with a little girl who is shooting up like a string bean, toes busting out of her sneakers, and who reads at 3rd grade level!
Mollie has been making tremendous progress academically and physically since stopping chemo 5 months ago. Her reading tests indicate that she is reading way above grade level (which has me amazed and wondering how to keep encouraging her to progress). She is making friends, started a "fairy club" at school, and continues to love art, pretend play, and writing. She is working on a story to submit to a writing contest.
The last few weeks have been emotional for me for a number of reasons, but one is directly related to Mollie's leukemia. I read on a discussion board that COG made some changes to the treatment protocol that Mollie followed (she wasn't actually enrolled in the study because it was closed at the time she was diagnosed). Apparently, they found that in normal and low risk children, doing an additional IM (interim maintenance) was superior to following the standard treatment and they are switching all low and normal risk patients to that treatment. This is a great stride for pediatric leukemia patients! Unfortunately, Mollie didn't get this additional IM. I know it doesn't change the risk numbers we were given at the beginning of treatment, but it just leaves me feeling worried.
I haven't been able to find any documentation about these changes, but I will bring it up with Dr. J at Mollie's appointment next week. Part of me wants to just turn a blind eye to pediatric cancer research because when I read it, I worry. And I can't change the past. But, I also feel very inspired and hopeful by the progress that is being made. So I'll continue to pay attention to the studies and hope that one day, there will be a certain cure and maybe we will even be able to prevent leukemia.
I sympathize with your worry, Sarah. You will always worry about this. I am so glad to hear she is doing well. And wow, 3rd grade level?!
ReplyDeleteNicola
Well I know that Mollie loves to read. This is great news. Tell her I will let her pick out a book when I see her next month.
ReplyDeleteI really can't comment intelligently about her treatment so I think talking to Dr. J (presumably not Julius Irving) is a good idea.
Sarah, your diligence is incredible.
Happy Saint Valentine's day to the whole family.
Hi, I stopped by from my blog to thank you for your idea for my picky eater. I am so sorry to read that your Mollie has gone through cancer and chemo, no little child should ever have to suffer that. And a mother should never have to worry like this about her children. Thinking of all of you.
ReplyDeleteI'm so glad Mollie is a great reader! Makes me smile:) I'll be in touch.
ReplyDeleteDru Swenson
Hi, you won my giveaway for a couple of coupons for Kidfresh meals. Just a word of note, they aren't widely available yet outside the northeast but hopefully you can find a way to use the coupons anyway. Please email me at carketch29 (at) yahoo (dot) com.
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