Round 7 of chemo is done. We were able to come home on Thursday after the second day of chemo and do the third day in clinic today. Everything has gone well for Brynlee so far.
One of the tests I wanted to post about is the VMA/HVA test that they do every time we have chemo. It basically monitors these catecholamines in her urine, which the tumors produce in excess with neuroblastoma. So as the treatment goes on these numbers should be going down, and Brynlee's are. We found out today that both the VMA and HVA are now within normal range for a child of her age.
Now for the other thing that I said wasn't a big deal but really is. I met with neurology yesterday, which they are my favorite people. Sarcasm anyone? I haven't met a neurologist that I like. They have always delivered bad news to me, and I know that I shouldn't blame it on the messenger, but they always put me in a bad mood. We found out that Brynlee has permanent spinal cord damage and that there are areas on her spinal cord that are dead. We kind of already knew that Brynlee would not make a full recovery physically, but I guess being told that she won't by a doctor doesn't make it any easier to come to terms with. In fact, this neurologist told me that Brynlee most likely will not regain much more than she has right now, and she said it with a smile on her face and a chipper tone in her voice. I cried most of the rest of the afternoon and evening. I have been frustrated by the lack of attention given to her physical difficulties. Yes, we have therapy every other week, but I have never felt that it has been enough, yet I didn't know what to do. The nurse practitioner talked to me afterwards, and she didn't get the same impression from the neurologist that I did. The NP's feeling is that since she is a baby she has a lot of potential and growing to do. Anyway, we haven't abandoned hope, but I guess it will take a miracle to have Brynlee not be wheelchair bound, which was my hope. I had hope that she would be able to walk, even if it wasn't normal and was limited or assisted. We shall see. No one can predict what Brynlee will be able to do. We just don't know.
On a brighter note today, Dr. B (Brynlee's oncologist) stopped by while we were in clinic for chemo and told us that she wanted to refer us to a pediatric rehab specialist, which I whole heartedly welcomed that news. The next time we are inpatient for chemo we will meet with her. I am hopeful for this and that we can get some more help for Brynlee.
Okay, first I am glad that she is doing well and the chemo seems to be working. That is awesome news. I am sorry about the rest.
ReplyDeleteI know the what ifs and unknown are scary and frustrating. We face that in our own way everyday. As far as therapy goes I would say don't be afraid to ask for what you think she needs. I don't know what her limitations are with the treatments, energy-wise what she can handle, but are there any clinics that specialize in therapy for children with developmental delays or pediatric physical therapists that she can see? To me every other week sounds like a very scant amount of therapy. Granted Brie didn't have chemo to contend with but she was doing 3 half hour sessions per week when she was 6 months old. Bottom line is YOU are her mom. You know her best and you know what she can handle. I would say that if you think she needs more attention to her physical disabilities you should at least have the option to try it.
No, I can't imagine that is fun news to deliver and even worse news to receive. I am so sorry! I am SO SORRY! We will continue to pray for miracles.
ReplyDeleteI keep typing then deleting, typing then deleting. We will continue to pray for Brynlee and your family.
ReplyDeleteStephanie,
ReplyDeleteI don't think there are any words that are going to help coming from me, other than, just like everyone else you know, she is in our prayers always. Don't let one doctor tell you what she can and can't do--she isn't even done with treatment! Prove her wrong. Ask for what you think she needs, just like Malisa said. YOU are the Mom, and you know her best. Miracles happen. You've seen them.
It takes you not excepting less for your daughter! I pray every night for your lil girl and I will continue to pray for answers for her walking one day. Technology has come so far and I have seen miracles working in the field of people with disabilities and I have always pushed the envelope and never settled for what a DR thinks or says. Ill continue to pray Brynlee.
ReplyDeleteDon't give up hope!! Miracles do happen. We were given hard info like this when Kyle was in the hospital....and he has proven all the doctors wrong. Babies are so reslient and their bodies are so forgiving and can find new ways to accomplish the things they need to. We are always thinking of you. Let me know when you are coming down by us again. I'd love to have Marissa again.
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