Wednesday, June 10, 2015

Elijah's exam and prosthetic

Such a sweet and happy guy!!! On Wednesday last week, Elijah got his new prosthetic eye!!!  They did such a great job and we are so thankful. It took some getting used to. But it has been so fun to take him out and have people ooh and ahh over how cute he is, without even noticing a real difference.

Wednesday night I stayed down in LA, because Elijah had his exam the following morning at CHLA (Children's).  I woke Elijah at 4am for his last feeding (it's the last time he can eat before anesthesia). We checked in at 6am, then went back to pre-op about 7:30am. A sweet friend of mine, who is a nurse at CHLA, got off work at 7:30am. She came up to visit, and as they wheeled Elijah back, we were able to pray and chat. As she left, I just needed to wait for the doctor-but I realized that while a normal exam took about 30-40 min., it had already been 60. That's intersting. So I texted Ben to be praying!!  After 90 minutes, they told me Elijah was in recovery. I went to nurse him-he is always very upset after waking from the anesthesia.

The doctor came in and told me-they found 3 new tumors in his remaining eye.  Normally, they would treat with chemo, but they don't want to do chemo on a child under 6 mos. They treated them with laser, but it only has a 50/50 shot of working. Also, they have to be careful with laser treatments that they don't damage vision. He does have correctable vision in his remaining eye, so we would like to preserve that. If the laser treatments don't work, then they will have to do chemo.

We are continuing to pursue alternative methods, including a focused chemo which delivers the medicine directly to his eye rather than his whole body.  

The presence of tumors in his other eye also mean he has a specific genetic mutation-one that is present throughout his whole body. It is very likely, "inevitable" in the medical world, that he will end up with a secondary cancer (bone cancer being the most common).  For now, we just take what is before us and want to get Elijah the best care possible with the least amount of side effects.

We got the news about the new tumors Thursday, Friday I spent most of the day on the phone and emailing with New York, where they do this specialized chemo treatment. The doctor saw Elijah's pictures and said he wanted to see him Tuesday or Wednesday. The soonest we could be ready for an exam in NY was Wednesday. So we had a tentative schedule for the exam Wednesday, with the chemo procedure Thursday-all pending insurance approval.

So we did what any crazy family of 9 would do. We packed up, loaded our van, and headed to New York.

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