So, we had our third visit to Portland, OR at Casey Eye Institute for Brendon's historical clinical trial. This was the visit we were hoping to hear the news of the actual gene therapy trial. We did. There was good and bad in this visit and, as a mom, mostly what I'm feeling is disappointment. Although, it's not about me so I have to focus on everything good. So, first, I will share the great things I learned. Then, I'll share a little of the disappointment.
So, the good stuff. The historical trial is coming to an end. We only have one more visit to Oregon in January. Even better news is that the gene therapy trials have begun!!! There are three different locations where the gene therapy trials are currently happening: OR, TX and MI. Group 1A has received treatment. Treatment means a shot in the eye, but could also equal improved vision! This is awesome news and we can't wait to find out the outcome. There will be four different treatment groups (1A, 1B, 2 and 3) with subjects over the age of 18 where they are testing for dosage. Brendon can't be part of these groups because he is not 18. I am okay with that. We never wanted him to be one of the first "guinea pigs" anyway. For those who are stepping up to the plate on this one, we thank you wholeheartedly and hope and pray that this treatment works for you!
Brendon has joined his cross country team at his high school. All summer, he has been getting up super early to get to practice. The week we were scheduled in Oregon for his Casey Eye Institute visit, his whole cross country team was at a college in Georgia running mountain trails. Since Brendon couldn't run the mountain trails, he ran up Multnomah Falls. In the beginning, I was following him up so I could be there in case he tripped or had issues but I had some issues where I froze in place in fear of the shear cliff drop that we saw on the not-so-manicured trail. I felt like I was going to fall off the side to my death. So, being the worst mother in the world, I walked to a safe point and waited for Brendon to come back. I waited what seemed like forever, with horrible thoughts of him not seeing the trail well enough to stay on it...He came back eventually and looked at me like I was crazy. He said something like: "Mom, I paid attention to the trail and never bothered to see the drop off." I guess that's good?? In years to come, that might just be one of Brendon's rights of passages to adulthood.He actually made it to the top of the Falls. I never did. And I have full vision.
So the good news is simple, we had another great visit mixed with doctor and fun. The gene therapy has begun. The bad news is not so simple...
To sign Brendon up for the gene therapy, we will be signing away so much of his time. This time is currently filled with school, friends and activities. The gene therapy trial consists of 12 visits in the first year. Since none of the trials are occurring anywhere near where we live, it will be both costly and time consuming. The costly part we can probably deal with but the time consuming part will be difficult to overcome. In this study, the "subject" needs to be there for the following visits:
visit 1= screening
visit 2=exam 7 days before treatment
visit 3=exam plus treatment injection
visit 4=day after treatment exam
visit 5=week after treatment exam
visit 6=two weeks after treatment exam
visit 7=one month after treatment exam
visit 8=two months after treatment exam
visit 9=three months after treatment exam
visit 10=four months after treatment exam
visit 11=five months after treatment exam
visit 12=six months after treatment exam
then, for the next four years, it's a yearly exam
It would be one thing if the trial was occurring locally but none of the locations are anywhere near us. If we are to do this, his entire junior/senior years of high school will be consumed with a gene therapy trial that may or may not be useful. That is not fair to him, especially since he is in such an intense program at school (AICE) that he is adamant on completing successfully. Even if we could make it work with his school, how in the world am I ever supposed to get enough time off of work to make this happen? Given the circumstances, even Brendon doesn't think we can do it.
I had one friend tell me that I should put Brendon's education on hold and take a leave of absence. I had another friend tell me that I need to let Brendon live his life without this kind of disruption and that if it is meant to be it will happen. I am simply without answers. We have been fighting this fight for years. Are we giving up if we don't participate? Will there be another chance for us if we wait? If I make all kinds of life adjustments to actually make the treatment happen, will I be hurting Brendon's chances for his future goals?
There certainly are no easy answers in any of this and I hope that the doctors, investors, and researchers understand that the "subjects" are actual people sacrificing for this study. We are all extremely thankful that the gene therapy has made it to the actual trial. However, it is a lot harder than we all thought to participate..
If there is anyone in the OR, TX or MI area with retinoschisis who hasn't yet looked into being part of this study, please just take a look. I've seen what similar trials have done with children with LCA (a similar disease) and am extremely hopeful that it will do the same or better with children with XLRS.
I'm not sure yet if we'll be able to figure out a way. If we can, we will. I have also heard that there is a possibility that the gene therapy will also take place at Massachusetts Eye and Ear. If that is true, we have a better chance of taking part. We will see.
I'm relying on the statement of my friend who said if it is meant to be, it will happen.