The clinic visit today was good. I got to meet Dr. Park finally. She is the attending on our team and has been directing all of the treatment, even though she hadn’t met us yet. This is her. She’s the expert on neuroblastomas and seems to be a leading expert in the field, nationally.
Anyway, we first met with the fellow, Dr. Cori Abicoff. Madeleine is weighing in at over 21lbs today. Holy freaking baby! I cannot believe she has gained a pound and a half in 3 days. Stupid steroid. I hate what it is doing to her, but know that right now she needs it in case of any swelling around her spinal cord. We discussed her heavy/rapid breathing and Cori isn’t concerned. Said that she can hear the air coming in to all parts of her lungs and the rapid breathing is more likely due to her weight gain (belly) pushing up against her diaphragm. **sigh** She is still getting 100% oxygen levels, so I won’t worry. Yet.
C0ri answered some questions I had about PT, Rehab, continued use of the steroid, etc. She assessed Madeleine’s movement and listened to my timeline of how she had gotten better and when she started getting worse. So, we’ll see if we continue to see some improvements in the next few days.
Next steps: MRI Wednesday morning/mid-day. Then we will have blood work done. They are coordinating an appointment for Wednesday afternoon with Dr. Park and Dr. Abicoff to review the MRI findings with us (yes, I am hoping Alex can make it to that appointment) and develop a long-term plan. If the tumor has shrunk we’ll move forward with chemo as we have been and wean off the steroid. If the tumor has not shrunk or is still growing, they will meet with the neuro surgeons and radiation team to determine which is the better route. It is looking like radiation would be, since the tumor completely wraps around her spinal cord and is not just pushing on one side. I didn’t realize it completely wrapped around her spine, so that was new news for me. Surgery would be iffy on fixing any of the nerve damage that’s occurred and could risk causing further damage.
Dr. Park wants us to get on board with PT, Rehab (which is like PT, but will also include a focus on bladder and bowel function rehabilitation) and Neurology (to better assess her function, see if it’s actually improving, etc and how we should move forward and eventually how we will deal with long-term care for her). They are going to coordinate all of those appointments for us and get those things moving. Hopefully we will have PT again early next week. Dr. Park also noticed how tight Madeleine’s Achilles tendons are and suggested I keep her leg braces on her for as much of the day as Madeleine will tolerate, so from here on out, she’ll have them on much of the time.
Dr. Park was really really great. I liked her a lot. I think the reality of little recovery of her legs is definitely hitting me as each appointment comes and goes. Dr. Abicoff today told me that the longer we go without seeing significant improvement, the less likely it is that we will see it. However she also said that it’s a long waiting game to see how much function she truly will recover. All we can do is treat the tumor and work with these other departments and hope for the best. Mentally I’m now coming up with plans in my mind of life with her in a wheel chair because it is looking more and more like that’s the case. Don’t get me wrong, I will still fight like hell for her to recover as much as she can, but I’m no longer living in denial.
So, that’s the update. Not a super cheery one, but factual none-the-less.