Sorry I didn’t send out an update over the weekend. Lack of sleep is catching up to us. This is what we have learned after meeting with the Retina Blastoma Specialists:
We chose to go to Houston after two specialists in DFW said they were pretty certain Carter had Retina Blastoma (RB). They did a CT Scan on Thursday to look for calcium deposits in which they did not find any. They also did some blood work (5 vials to be exact – poor Carter) to be able to tests for different viruses that can be part of vision lose. On Friday we got up at 5:00am went back down to the medical center for Carter’s sedated eye exam. This was a bit overwhelming as Carter essentially had a surgical team with him as the procedure is done in the operating room. We had 8 doctors, attendees, anesthesiologists, and nurses huddled around him in prep for the test. We were getting rapid fire questions and information thrown our way. Basically the test is to allow them to look deep into and all around both of his eyes. I can give more details later but let me fast forward to the findings.
The RB doctor showed us the pictures and walked us through all the test/exams over the two days. Basically he told us he does not believe Carter has RB. Some reasons for that include: He could not find any calcium, the eye is yellow and not white (white typically means RB) and even his age makes it less likely. Unfortunately he can not rule out RB with certainty. He leans more towards the Coats disease as what could be affecting Carter. With this disease, his eye will continue to deteriorate and eventually allow glaucoma to develop. At that point Carter would be in more and more pain. This could happen in two days or two years.
So the lessened likelihood of cancer is encouraging and a huge answer to prayer. Unfortunately it is not a certainty until we remove his eye and do pathology on it. This is the doctors recommendation which is in line with the two specialists we previously saw. They all agree that Carter will never see out of that eye again so removing it does him no harm and would allow them to test it and completely rule out RB.
Now we must decide if we will remove it, when, where (Houston or Cooks) and who will do it. So you know, we are heavily leaning towards having it removed here at Cooks by Dr Spencer.
Until that day comes, we continue to pray that God will heal Carter’s eye. I believe He can and if He does no doctor, surgery, medicine, etc would get the glory because all have now said it is impossible. What is impossible for man is possible for our Creator though. And if God decides His plan for Carter is to have the eye removed, we will trust in that perfect plan and continue to thank Him for this wonderful blessing. Please continue to join us in praying for healing and discernment in the surgery, if so needed.
The doctor today told us he does not think Carter has cancer. There is still a small chance that it is cancer but most likely it is Coates’ disease. There is a small spot close to his optic nerve that is concerning so the suggestion right now is to go ahead and have the surgery to take the eye. If it is Coates disease, there will be degeneration of that eye which could cause glaucoma so he would then be in pain. Either way, he will need to have his eye removed so we are just trying to decide when and where to have the surgery done – Cooks or Houston. Lots of praises today and much better news than what we were thinking! Still lots of questions and unknowns but I think we can breath now. Still believing God can give him his sight back if He chooses. Thank you for your prayers today. Our sweet little Carter is one tough guy and continues to amaze us with his courage.