He stopped his Dexamethasone last Friday and his appetite that we've grown so accustomed to eating the fridge clean, is gone. He's been vomiting and gagging quite often this week. His Kit Kat obsession has officially been thrown in the bucket - I made the mistake of bringing him one today from the grocery store and even looking at the package he gagged. We're going to try to play around with some Gravol on top of the Ondans to see if it makes any difference. He did pretty good tonight with his dinner request though - tacos...he even made them up himself! They have a kitchen on 2B for the families to use, but wow, do they ever need some things. I think they have a total of 3 plates and I was stuck using some towels to take stuff out of the oven.
The antibiotics are definately doing their job on his C-Diff and in conjunction with that, he's finally off isolation! So nice to actually be able to go for a walk with him - kind of funny though, as soon as he found out he could leave the room, he asks; "How long does the walk have to be?".
We've started our GCSF training - on Sunday, Keian will need to get a port put into his leg, and every day while we are home for the next couple weeks, we'll have to inject him with the drug that will help to shorten the cycle of low neutrophils. Unfortunately, it won't keep them from getting low, but atleast it will shorten the duration to which he will be suseptible to internal infections. We have also had our meeting with the Physiotherapist here at the hospital. Because of his peripheral neuropathy, he has very tight muscles and limited strength. They also noted that his trunk and hip muscles have decreased strength and mobility. They may consider putting orthotics on his feet while he sleeps in order to keep them pulled up. We've been doing our stretching exercises daily - Keian definately prefers the clam slap with his legs as he tries to catch our hands.
His hair is now pretty much gone. It's slowly been coming and going, but it's so thin on the front that it's pretty much non existant - especially if you compare how thick his hair was during the summer. Buuuut, it will grow back and be just as beautiful as it was! Something we have noticed though, is that his eyebrows and eyelashes are getting extremely light...nearly blonde. They tell us that every person that receives chemo is different - there are so many different treatment protocols and each chemo has many side effects, some that affect fast growing cells, which is why hair is one of the first to go. When his hair finally does grow back, it may even be a different colour or texture!
Earlier in the day yesterday, I noticed a Mom and Dad in the hall, noticeably distressed. Surprisingly, this isn't that usual to see, as I find that most families tend to stay clear of a lot of interaction with others. I was talking with Keian's nurse and she mentioned that the news those parents were told was not good. Their little boy, maybe a couple years older than Keian, was just diagnosed with terminal brain cancer with no hope of treatment. My heart immediately sank and I found myself thinking about this family for the entire day. When I was leaving last night, I saw the Mother sitting on the ground outside of the Oncology ward crying. She looked up and smiled as I walked through the doors - it was almost as if I could see exactly what she was feeling when I looked into her eyes. It's like an unspoken word and I truly understood how devastated she was feeling. I bent down and held her hand and stroked her hair. I cried the entire way home and couldn't stop thinking about what the future holds for their family. I pray for peace and precious memories with their boy.
Ryan and I have been having to take turns going home in the evenings with Joren, as he's not able to spend the night at the hospital. Joren is spending the night with his Grandparents tonight, so that Ryan, Keian and I can have a family sleepover...love that. And, what a perfect night for that to happen...while we were all sitting around giggling and horsing around, K's Oncologist came in with a big smile! We've been waiting for our results for the storage disorder test - back in November, Keian tested positive for the abnormal VLCFA storage disorder called Adrenal Leukodystrophy, but they were unsure if it was the chemo that damaged his liver or if he truly had ALD. I haven't talked too much about the ALD with anyone besides Ryan, as the outcome, if he was truly positive, was not favourable. Also, if Keian was, then Joren also had a chance he was, and therefore, they would be unable to harvest his bone marrow for Keian. I am beyond over the moon happy that her smile made our day...or our weekend for that matter! Keian and Joren were both negative for the disorder!! This means that the transplant can go ahead as planned! It feels like lately all we seem to be receiving is bad and unfavourable news and this felt so incredible to finally be able to truly smile!
"Wondrous is the strength of cheerfulness, and its power of endurance - the cheerful man will do more in the same time, will do it; better, will preserve it longer, than the sad or sullen" - sometimes this is one of the hardest things to do. Having said that, we will never take a minute for granted, we will have fun, show love and appreciation, make the best of our days and stay strong for our sweet boy<3
"Our greatest glory is not in never falling, but in rising up everytime we fall"