I know it’s been a few days since I updated last. I apologize for that, but since being released from the hospital we have been crazy busy. I thought we were busy while we were at the hospital. HA! Now I have no nurses to lean on.
So, first, more test results. The night we got home from the hospital I heard from the doctor via the phone and she had the results of the genetic marker test. This is the test that tells us whether or not this is the favorable or non-favorable version of neuroblastoma. We are SOO happy to tell everyone that it is the favorable version, which is what the doctors thought. !!! Thank goodness!!
Her urine output was good, her vital signs good, etc so they released us from the hospital in the afternoon on Wednesday. Yesterday (Thursday) we went back to the hospital first thing in the morning for her to get a shot which helps ramp up her white blood cell count since it will dip due to the chemo. For those of you that don’t know, white blood cells are what keep your immune system strong to fight off infection. With low white blood cell counts, the danger of getting SERIOUSLY sick after chemo is quite high. So this shot helps ramp up production of those cells and they said that since using it on chemo patients, they have seen infections and subsequent hospitalizations drop dramatically. Pretty cool.
Then it was off to radiology so that Madeleine could get her MIBG scan. This is another test to make sure the cancer hadn’t spread, and they had to give her anesthesia again. She did well, again, but I am a happy mama that those are over with for the time being.
Today we went back for her first clinic visit. They did a blood draw, we met with our social worker again, we met our nutritionist and we met one of our nurses on our team. It was a long appointment. About 3 hours, to be more precise.
The nutritionist wants Madeleine to gain some weight. For her height, she is in the 25th percentile for weight.
We met one of the two nurses assigned to our team, she was great, too. They all adore Madeleine. Dahlia (RN) even said “She is just THE CUTEST, I want to squeeze her!” and I said “yeah, we think she’s pretty darn cute, but know that we’re partial” and she said “nope, not partial, she’s just IS so adorable!!” Makes me feel good that all the nurses and doctors adore her so much.
She does have thrush thanks to the chemo, so we got a prescription for that. They’ve reduced her steroid prescription to half the dosage so we can start tapering her off of it as the tumor (hopefully) shrinks from the chemo. We are scheduled for more chemo on Aug. 14th. That just happens to be our 5th anniversary, too. They said she could do out patient on the weekend, but with Alex working weekends there’s no way I want a baby who is going through chemo alone at home with me with no help, so I requested we do in-patient. Alex couldn’t go to this appointment because he had a work meeting/training thing today and when I discussed it with him later he agreed. We both want to have the nurses there.
Her MIBG scan was clear, meaning that the cancer has not spread any further at all. Again, what the doctors suspected, but it is so freaking good to hear that it hasn’t and that a test has confirmed it! Again, woohooo!!
I’ve been way too nervous to let her cry at all while at home, but the RN today said she still needs the same discipline as she had before and needs to maintain her schedule. So if we need to CIO to get her sleeping again, to do it. I thought it was hard before. She said to make sure she’s not in pain or inconsolable prior to CIO, so tonight I rocked her until she was asleep and laid her down. She woke up when I laid her down and instead of going back and rocking her more, I simply let her cry. She finally fell asleep and has been asleep since. I hope she gets back on track somewhat, as I’m sure her fussiness lately is in large part due to being so incredibly tired and off schedule.
I think that’s it…we’ve had a very busy few days. Yesterday we were there for 6 hours, today we were gone for another 6 hours. We will go back Monday again for another blood draw to make sure her blood counts are ok. Her red blood cells were a 24 today, which is pretty low. If it’s below a 20 on Monday, they will give her a transfusion. I did ask about blood banking for her so we reduce the risk of her getting any diseases from a blood transfusion to zero. They said we could do that through the Puget Sound Blood Center, so we will have to go set that up next week.
Not much change on the leg movement in the last few days, but she is so exhausted, I am hoping that may be part of it. We are still seeing some movement, so I am trying to remain hopeful for more progress.
I do realize that I never did a 9 month birthday post, but I figure through all of this, the update is pretty much in the posts from the last week. Actually, about a week ago, at about this time is when we found out our baby girl has cancer. I cannot believe it’s only been a week. I must be living in a time warp.