He's doing so well these days that it's hard to think I was just sitting in a waiting room with Justin, sobbing, because I had handed my baby over to strangers that were going to cut him open. It was surreal and so very scary. I was expecting an awake and alert boy after surgery, just like the previous time he went under anesthesia, but that's not what happened. He was still asleep when we got him back... and he slept and slept... even after Justin and everyone had left the hospital for the night. He woke up long enough to eat a very little, and then slept some more. The next day and days to come he was still groggy and less energetic than his normal self. So, we did a lot of cuddling and chatting.
It's hard... as a parent you know your kid(s)... and when we got Sklyer post-op, he didn't smell the same, or act the same, or even look the same. We had to be gentler with him. We had to force medicine in him... milliliter by milliliter, for days. Everything had changed and we didn't know when we would get our little boy back.
We couldn't give him a full bath for about 2 weeks, because of his lower stitches, so showering him off without soaking his dual area stitches is what we managed, but he still smelled of hospital. After we noticed a visible difference in his healing, we finally got in some splash time and washed all the hospital stink off!
Then, there were his physical changes... while his surgeon doesn't expect him to have a very visible scar as he heals and grows, we are unsure if he sustained nerve damage during surgery. There was one nerve connected to the neuroblastoma, which had to be disconnected for the tumor removal. A lot of kids that go through this procedure have resulting Horner's Syndrome... which basically means a permanent droop of the eyelid and shrinking of the pupil. Later on, it could mean his left eye will be drier or red, or that his sweat glands on that side of his face won't produce sweat. It was very noticeable post-op, probably exaggerated by his facial swelling. I can tell that it has faded some now. Obviously this is a small price to pay for cancer removal. As a parent though, you wonder and hope that it will not impact his vision or his life later on. He has an appointment with ophthalmology next month so that we can be proactive with the condition.
Top left: before surgery Top right: day after surgery
Bottom left: 1 week after surgery Bottom right: today, 1 month after surgery
There's still a droop on his left eyelid, but it's definitely lessened. It's more pronounced when he is tired. Thankfully it doesn't appear to be obstructing his vision, so the precautionary ophthalmology appointment is to establish his new baseline, so that we can determine any changes later on.
So, WHAT'S NEXT?
Well... he's healed well, and with his test results showing the cancer only in the neuroblastoma, he is cancer-free at this point! Woo-hoo!! This means that he's avoided chemotherapy... for now. His treatment plan going forward is observation only. Currently, this looks like MRIs every 3 months, starting next month. He will need slight sedation for these. Then, when we get some clean scans on the books, he can be downgraded to ultrasounds only.
Unfortunately, there is nothing we can do to determine if another neuroblastoma will develop. They simply develop when nerves go haywire and don't grow properly. Skyler's surgeon basically said there's a 50/50 chance of a new growth, without any preventative measures available. Also, doctors cannot find a genetic link for these things, so there is no concern that our big kids are at risk. I asked.
For now... we are thankful that he is healthy, mending, and a typical almost-one-year-old. We are thanking God for a TON of answered prayers and taking it one follow-up at a time.
