Going under and coming up from anesthesia are the most difficult parts of the day, other than the moments leading up to receiving the MRI results. This time, when we walked into the OR, JR immediately pointed to the mask, began to cry, and said "Mommy, I don't want that". My stomach flopped over and my heart sank. I told him it was OK (it wasn't), and then sat with him in my lap and restrained him as he screamed and fought the mask and effects of the drugs. Everybody in the room sang "Wheels on the Bus" in the most soothing melody possible while his cries slowly grew weaker. Brandon and I held ourselves together until they took his limp body from me and we closed the door behind us, leaving him in the hands of the team. To be sure our baby's cancer hasn't returned. It just doesn't get easier.
Waking up has been horrible the past several rounds as well. JR wakes up before the drugs have fully worn off and he fights and screams and thrashes in his disorientation. This time he tried to rip out his IV, and pull all the wires and cuffs off of his body. It is exhausting and very hard to bear for a good 45 minutes until he finally wakes up more fully and calms down a bit. He doesn't fully relax until the IV is out and he's unhooked from all machines. It's all pretty darn traumatic.
I want to thank everyone for the outpouring of love, prayers and support throughout scan time. It really helps to read your encouraging messages, and makes us feel like we aren't doing this alone. We also are so thankful for the meals my MOMS club has provided us with every time scan day rolls around. We are so thankful for our family, friends, and loving community!
Unfortunately, there's some not-so-great news to share as well. As most of you know, JR has been struggling with chronic issues with his eye as a result of the 28 rounds of radiation he endured to the region. We have gone through so much over the past two years in effort to build vision, and bring healing. JR patched for 11 months, underwent two reconstructive surgeries last fall, had a cataract removed and an artificial lens implanted a few weeks later, and has suffered extreme photophobia (light sensitivity) for the past 10 months. He endured weekly CHOP visits while a scratch on his cornea took 8 weeks to heal (a healthy eye can heal from a scratch in 24hours). He has an overgrowth of blood vessels in the eye, making it appear bloodshot. JR hasn't tolerated patching since the scratch, which we assumed was due to the pain the scratch caused him. At his exam under anesthesia, the ophthalmologist saw why JR is not tolerating the patch, even though the scratch has finally healed. Cellular matter has grown over a hole cut in the back of JR's eye (part of cataract removal and necessary for proper vision). As a result, JR's vision is greatly diminished -it's as though he is seeing through a frosted windshield. Although this type of growth happens occasionally after cataract surgery, it is uncommon. JR would have to undergo yet another surgery to remove the matter, and then we would have to start over with patching to see if he can regain vision. And the cellular matter could very well return. So shoot. That's one decision we have to make. It's really difficult to contend with the fact that all the work and struggle JR went through with the patch led to this. Virtually no vision and another surgery and back to square one.
We want to give JR one more chance at restoring vision in the eye, however this is not the full picture. In addition to the fact that JR cannot see, his light sensitivity effects his quality of life daily. JR needs sunglasses, sun hat, and full shade in order to be comfortable outdoors. Inside he likes it to be as dark as possible. Which we can't control outside of our home. He typically holds his hand up over his eye to block out the light, and/or looks down all the time. Some days are really really bad and he just wants his face in a pillow all day. Other days he functions much better and seems to tolerate light reasonably well. We really don't know what causes the fluctuations, but it is an ongoing issue that causes us all a lot of grief.
Tomorrow we are off to Brookhaven, PA to try a rare procedure which will result in the creation of an autologous eye serum for John Ryan. JR's blood will be drawn and then compounded into a serum for his eye. (Autologous means the donor and recipient are the same.) The hope it that this serum will bring relief and healing that artificial drops have been unable to do. This process will take several hours, and the lab/pharmacy is an hour from our home. We will get a 3-month supply of the serum. Insurance does not cover -though we are working to fight that!
This procedure is a trial, and we are hopeful it will bring JR relief. However if it doesn't work, the team is discussing enucleation -removal of the eye. We knew at the time JR received radiation that JR could end up losing his eye, but we couldn't really comprehend that at the time, and it didn't matter because radiation was necessary to save his life. But now it's being discussed as a real possibility, and it's a lot to swallow. The facts are that JR is not able to use the eye to see, other than light. Surgery and patching may or may not bring back his vision. Light is extraordinarily painful to JR's eye and this sensitivity effects his quality of life daily. Maintaining vision and ocular health has been an uphill battle for the past year. We want what is best for our son, and we want him to have the very best quality of life possible. But taking his eye is so permanent. And then he has just one eye. And it's another unexpected and arduous journey with life-long implications. And at the moment it just makes us very sad. So we are only in the considerations part of enucleation. But it's a very real, complex, and intense consideration.
Thanks for taking the time to read and keep us with our little warrior and family. We love our bug! Never Quit!