The eye has officially taken over my life, my sister says caring for the eye alone would put a mom over the edge, add on cancer and it is pretty bad. Basically, we think we have a long term solution, it is called a prose lens, and you can only get them at a handful of locations in the world, here and Cornell are two of them. The process is long, 2-6 weeks to get approved (insurance will be a major hurdle, and these lenses are very expensive, but they should ultimately approve), then 12 custom fittings which take time (and there is time between each fitting) to build the lens. The lens will then sit over the cornea (think contact lens but only over a portion of the eye) will keep it lubricated/medicated, protect it from scratches and only needs to be changed once every 24 hours! The best part is, Connor won’t be able to rip it off! So to both Casey and I this is the best solution, but now the question is how do we fit this in to Con’s already busy medical schedule. We need to do all this at Cornell since once you pick a clinic with the insurance hurdles you can’t really transfer care and there is not enough time left here to do it up here anyways (process on the long side can take up to 6 months). Waiting to start is problematic too because Con needed this lens yesterday and keeps damaging his eye, additionally when we get home while we may have a week or two “off” the time is not really off, we have to fit a port surgery in (we are changing to a broviac port for his high dose chemo since it has two lines in case we need to administer incompatible things that are time sensitive at the same time) and we have to collect the rest of the stem cells we need. We can’t take more time before we start the high dose chemo with stem cell rescue because of microscopic disease, while we are treating the original tumor site while up here, nothing else is being treated and if there is metastasized microscopic disease this summer is prime opportunity for it to multiply so we need to get high dose chemo started as soon as possible. Further complicating all this is the eye in its current state is a prime site for infection with every scratch and with high dose chemo an infection could kill him so we do need to figure out a solution for it, as a result I have decided to take it all into my own hands. The right is not talking to the left and too many hospitals and doctors are involved at this point each worrying about their individual part of his care, but not the big picture with me trying to be the link to them all. At this point I told Children’s I was not going to keep coming back everyday or every other day I would come once a week and call if it got worse, because while they are great and one of their doctors came up with this solution, no progress towards it have been made and when we go they just look at the eye and say it is the same, they agreed. I am working on getting us in with the cornea specialist who might be able to fast track this a bit, and have directly called the prose number at Cornell and am waiting for the np to call me back, I also left a message for Dr. G., because I am hoping we can solidify the timeline a bit and perhaps figure out a way to temporally fix the eye so high dose chemo can start. It is never simple, hope to have some news tomorrow.
In other news, Con has perfected climbing out of a very tall crib, while I know I am watching a miracle, it did not feel like it when he bopped out of the room at 1:30 am (with Claire trailing behind, she has been able to get out for a long time but doesn’t unless something makes her like Con getting out) and decided it was party time until 4, pointing out who he is (just figured out how to point to himself and say “Connor”), who I am and who Claire is all the while wrestling with her. I tried to enjoy it as much as I could, but this is one tired mama!