I took Mollie in to clinic this morning for more chemo- doxorubicin and vincristine. For some reason, she was really scared of the whole visit, including the port access. She is off the steroids for 7 days, but I think the withdrawal is worse than the pulse itself. Her numbers were fantastic: ANC = 4800 (last week was 4700), platelets and hemoglobin were also good. We expect these numbers to fall this week, since she is not getting the steroids.
I talked to a few other "leukemia" moms this morning whose sons (all in long term maintenance) had experienced some sort of cognitive decline after chemo. We were told this is one of the common side effects of the intrathecal (spinal) chemotherapy. In some kids it is more noticeable than others. Right now, I am not extremely concerned about it (first, let's get through the chemo), but it is something to keep in mind and watch out for.
We ended up having a pretty good day. We went to lunch after clinic and then came home and made clothespin dolls from a kit (thanks Cameron!). After dinner, Mollie and I made brownies. Then she played a spelling game (Design Your Own Superhero) on the internet (PBS Kids- SuperWhy!). She loves SuperWhy! and was so proud that she could use the mouse and play the game all by herself!
She went to bed saying, "Mama, I had a really nice day. I always have a good day when you and daddy are here." She is just too sweet sometimes.
this post made me cry. hugs all around.
ReplyDeletenea, I know, it breaks my heart too. I have avoided even thinking about this since we learned about it when we first signed the consent forms for Mollie's treatment back in June.
ReplyDeleteThe likely culprit for the cognitive changes is the central nervous system prophylaxis that has reduced the incidence of CNS relapse from 75-80% to 10%. We don't really have a choice. And our main oncologist said that if we start out with a smart kid, any changes probably won't be noticeable. Another "positive" is that as a girl, Mollie should undergo maintenance chemo for only 2 years; boys have to get it for 3 years.
Hi Sarah,
ReplyDeleteThanks for looking us up. I really enjoyed talking with all the "leukemia" moms today myself and I think that it would be great to have a support group of others that have/are experiencing the same things. That is why I have loved caring bridge. I have found several children that were diagnosed around the time Gage was and can read their journals to see what is to come.
Mollie is such a cutie. I hope everything continues to go well for you all. I strongly agree that the after effects of steroids are worst than the actual run of them.
Praying for you guys, see you Tuesday....spinal tap.
Nicole Kicklighter
Don't you wish all problems in life could be solved with Super Letters? for now I will just send you these E-N-C-P-T-A-I-E. Once you unscramble them you can do that cool little dance and sing the Super Why song "W-H-Y spells WHY! Super Why!" ...All of this will end someday and you can look back at how crazy it was at your house and what a trooper Mollie has been. It is great that she will have a journal of this experience when she is all grown up. - thinking of all of you. eh AKA parent of a PBSkids.org fan
ReplyDeleteLiz, thanks for the patience!! Later in the week update... things are going well. But steroids start up again on Tuesday.
ReplyDelete