We will be heading back to the hospital tomorrow for Madeleine’s second course of chemo. So today we had several appointments in anticipation of that. First up, physical therapy!
Today was sort of the bench mark appointment. See where Madeleine is and how we can improve upon that. First she took an assessment of how Madeleine had been moving and what she’s doing now. She noticed that she’s got good flexibility everywhere but her achilles tendon, so she has made her little splints to help stretch out her tendon each day so she doesn’t lose that range of motion. Otherwise we’d just have to stretch them and make them more flexible later – which wouldn’t be comfortable for her. I’m so glad she caught that now!!
We also will be working on sitting and improving her core strength. She saw Madeleine roll and said we should practice that several times a day as well. Other than that, we will be going back to see her in a couple of weeks to see if there is any improvement.
I sincerely hope we see more tumor shrinkage after this round of chemo because I am very nervous that the tumor is still pushing on her spine and that is why I’ve seen a regression in her movement lately. 😦 I won’t feel better about that until after the chemo and CAT scan that will happen 2-3 weeks afterwards.
I did, however, arrive at the hospital quite early today, so I went to radiology and requested a CD with her MRI imaging on it. I will have to post those in another post.
After physical therapy we rushed off to labs. Waited, because they were busy, waited afterwards for our clinic appointment and then met with our ARNP. The good news today? All of the higher level testing has come back from her biopsy. They all came back negative! This puts her in the low risk of the intermediate risk category. I lost you? Ok, so with Neuroblastomas there are 3 risk ratings. Low, Medium and High. Low risk essentially means that the child doesn’t need treatment. So Madeleine automatically falls into intermediate risk. However there are several different scenarios/circumstances which place a child in this category. Some situations are better or worse than others, and the good news is that Madeleine’s is one of the better.
Her red blood cells are still at about the same as they had been and haven’t really rebounded much. That makes me a tad nervous for this round of chemo to see how low they’ll drop. Her white blood cells (ACN) has dropped a bunch from the ridiculously high number that it’s been for the last little bit here. It went from 38Kish to 12Kish. 4K is considered the high side of normal, so we’re getting closer to where it hopefully shouldn’t be too painful for her anymore. She will get another shot of Nulasta after this round of chemo, so we will likely see the numbers jump again.
What else. We are still stepping down the steroid. They are pretty serious about getting her off of that, as the side effects of long term use are not good. I don’t like them, either, so I am glad she is on her way to being off of it. She is now taking 1/8th of the daily dose that she was originally.
We’ll continue “exercising” her and hopefully we will start to see more progress.