We are back at the RMH ( Ronald McDonald House). Woot woot! Clayton is not exactly showing his excitement, but I'm sure he prefers it to the hospital. Lord knows George and I do. We got here yesterday around noon and have been laying around the room ever since. Clayton doesn't seem to have much nausea left from chemo and his diarrhea is subsiding (thank goodness because we were having at least three bed changes a day in hospital). Yes, we went from no bowel movements after surgery to not being able to control it after chemo. I know most of you might not be interested in Clayton's bowels, but in case another parent going through treatment is curious about side effects, I'm throwing it all out there. I've also noticed he's developed incredibly thick saliva since starting chemo. I am hoping that is not a sign he'll get mouth sores. An oddball symptom he is having is some itching that I'm not sure if it is a chemo reaction or the dryness in the air. I know I have spells where I itch like crazy up here. So who knows...
We have to check in at the clinic here in the morning before we can leave and the doctors had us schedule our flight for late in the day in case we have to do a transfusion of any kind. The plan is to leave here tomorrow night at 7 to fly home provided nothing holds us up...fingers crossed!
From there they want us back roughly May 29, 30 and 31 for scans. It will be a quick trip here and right back home though. The results of those scans are what we have been working towards. We are looking for those results to show that Clayton is NED (no evidence of disease). That is the closest to cured he can really get since there is never any guarantee. But that is what we want!!! From there we will tentatively be back up here to start 3f8 on June 11. We will do our first cycle of 3f8 from that Monday through Friday. The following week, we will do radiation from Monday the 18th through the following Friday, break for the weekend and then finish up radiation on the following Monday and Tuesday. Then it will be home for a week or two and then back up for a week to do the second round of 3f8. After that things will start spacing out. We will do two more rounds of 3f8 spaced about 3-4 weeks apart and then we will do a round of 3f8 every 8 weeks for at least 4 more rounds. The goal is to have at least 8 rounds total. Everything will depend on what his body allows us to do. The body can build up an immune response to 3f8 and that will determine the future.
That is the tentative schedule for now. Time will tell with everything...
On a side note, we have some new buddies. Since we've been here, I have continued to bump into another family staying on our floor who have a little girl, Lily, with neuroblastoma. They are from England and she is precious. She has a twin sister Molly who is perfectly healthy and Lily herself is now in remission as I understand it. I can't do normal links when writing from my phone, but you can copy and paste the link below to read about her AMAZING journey. She is absolutely precious in person, the pictures in the story don't do her justice:
http://www.dailymail.co.uk/health/article-2097155/Neuroblastoma--Toddler-Lilly-MacGlashan-riddled-cancer-tumours-remission-pioneering-treatment-U-S.html
Then there is Abigail. Again so so precious! She too I believe is in remission. Below is a link to her blog:
http://abigailfightscancer.com/sticker-therapy/
It's funny that we seem to have met so many little girls since this disease affects more little boys...maybe they are just drawn to us...Clayton is such a ladies man and all! ;). I will say this for these little girls we've met, they all seem to have a lot of spunk!
Zoey update:
They will try extubating her again tomorrow. She has been peaceful it seems for a few days. In the mean time, she's been getting her hair and nails done!
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