Update

So when we got here today we were almost sent home, and while I hate chemo that would have freaked me out, suddenly I was fighting for chemo. Basically, Connor has had a red eye for the last two weeks, numerous doctors have seen it and had no idea what it was, we were given pink eye drops and have been on them for 10 days, they did not help at all. The concern was it could be viral and chemo could be extremely risky, we could end up back in the PICU like the first cycle and no one wants to relive that again. I pleaded with our doctor that we needed to give chemo, in my heart I believed he was fine. She thought about it and said let’s move forward with methotrexate, which is the harshest drug on Con (causes vomiting and mouth sores) but does not completely attack the bone marrow like his other drugs. The methotrexate takes 72 hours or more to clear his system and you can not do other drugs until it clears which bought us time on the eye and for an ophthalmologist here to check him out. Well they did and after a brief freak out by me that it could be another tumor, we discovered he had a scratch on the front of his eye, no idea how, but this is good news. He will be on a variety of drugs but this in no way should impact chemo. The second issue is the cold, it scored us isolation but Dr. G. Will determine in a few days if we move forward. We are not trying to obliterate the remaining cells this round, but rather keep the current cells from growing and keep him stable until 7-7 when he get radiation to kill them. My hope as much as I hate chemo that we move forward with the whole round as it should achieve our objective, only time will tell. The reason this was s concerning today is for a few reasons, first Connor has not had chemo in like 7 weeks and that is a chance for the cancer, second if we waited to start Connor would not be ready to travel to Boston for his prep appointments and that would mean everything up there would shift and no one is comfortable waiting past 7-7 for radiation. Radiation is his best hope and the sooner the better. I am happy with where we landed and hopeful he will get to do the entire cycle since our doctors are quite aggressive, like us, and do not like sitting around. This just may mean an extended hospital stay like the first cycle, but I keep telling myself cure is the goal not getting out of the hospital in 7 days.

In other news, Connor is napping, without me in the bed! He of course needs the iPad, his shoes on and has to lay across it and in the only section there are no railings, but whatever I will take it, should make for a very interesting night.

Chemo has been ordered so just waiting for pharmacy to deliver it, which will be any minute meaning Con will be awoken from his nap😢

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