First, a cute picture. 😀
Now let’s get down to business. The appointment was really great! Alex was able to go with, which I am very happy about. We have seen “significant shrinkage” of the tumor. The doctor walked in and smiled and I just knew it was good news. She told us we’d seen “significant shrinkage” and then pulled up both MRI’s to look at side by side so we could see the differences. I’m glad DH got to see it, too.
The pressure is being relieved on her spine. There is still a little bit, but it’s greatly reduced. The tumor is not as thick (from front to back) and not as tall or wide. It also doesn’t go as far from her left side across the spine to her right side. So now the tumor is mostly all on the left side of her body. 🙂 Even Alex and I could see how much it’d shrunk, it was quite obvious.
Surgery is still too dangerous in terms of risking her spine further, so we will be doing two more courses of chemo and then another MRI. We’ll see then what the next steps will be. This 3rd course of chemo is the one Dr. Park said that typically makes kids the most sick. So we’re debating doing in patient chemo again.
Also, Dr. Park said that since a large amount of pressure has been released from her spine, that we likely won’t see great recovery since we haven’t seen it yet. The longer we go and the more the tumor shrinks without seeing more leg recovery, the less and less likely. I’m starting to come to terms with that, but that doesn’t mean it’s not a tough pill to swallow. She did say that it will take time to see just how much recovery she will have, though. That was nice to hear.
We will be weaning her off the steroid in the next 10 days now that we know the tumor has shrunk. Thank goodness!! Alex and I are thrilled about that!!! Hopefully she will start sleeping better and be a happier girl. Alex’s aunt had a brain surgery about 10 years ago. She was on similar steroids and said that they deteriorated her muscles (which I knew was a side effect) and that for a while she could hardly even walk and some days she couldn’t get up out of bed. So, that makes me hopeful that as she gets off these steroids perhaps we will see some more strength return and her muscles can develop more. In the last couple of days I can see her trying to move her right leg and foot more…but they’re not grand or large movements. Her left leg is still not moving much though.
Her red blood cell counts were pretty low, so we’re going back Saturday for more labs and may likely need a transfusion on Sunday. I hope not, but it certainly explains her falling asleep on my chest the last two days. Poor baby gets her pacifier and just collapses against me.
This afternoon while Alex slept, Madeleine and I went to the grocery store to pick up more food for her since she’s still slamming through the baby food crazy fast. I picked up some vanilla yogurt for her because she really seem to prefer the “people food” as opposed to the “baby food”. Here she is, scarfing down piles of yogurt.
And finally, even though she’s super clingy to mama, she’ll always be: