He seemed to tolerate the chemo he received daily pretty well, except for the appetite suppression, vomiting and nausea – whoa, when I say it like that, it doesn’t sound like he tolerated it very well, but really, compared to what could happen, they are the lesser of evils. The smells are one of the most major things, as they trigger bouts of nausea and vomiting – note to self: bring trays for EVERY walk we take, as sometimes it’s not always possible to make it back to his room. By Thursday he was off isolation – for the first 3 days of admission he was confined to his little room. But, I am happy to say that C-Diff remains no longer! It’s funny how he was begging to get out of the room and then as soon as he’s off isolation and we wanted to go for a walk, the first thing out of his mouth was “how long does the walk have to be?” We've been noticing quite a few changes with his hair lately. Not only has he almost completely lost it on the top of his head, but the parts that are still growing, much of it is blonde! Yes, blonde! His eyebrows have been lightening, as well. We've been told that after a long bout of chemo that these things have permanently changed on some patients in the past. You never know, Keian might end up looking like Luke Skywalker after all - Keian would be in his glory. Luke Skywalker may have to take some pointers from the best fighter I know!
Today, Keian tried to go up stairs. His legs are very weak and have lost a lot of muscle tone – he isn’t able to go up even one stair on his own, without his legs buckling under him and falling. Only a few short months ago, this is the same boy that ran around the kitchen island a million times. His appetite is now completely non existent. He has had one scoop of ice cream and one piece of turkey bacon for the entire day and wasn’t even able to keep that down. I’ve been giving him regular doses of Ondansetron and Gravol, but they do very minimal to help. He will require the NG feeding tube for transplant, but they’ll likely put it in much earlier as he’s already hit the level of concern for nutrition. The facial and torso swelling that’s been so imminent this last month or so is slowly dwindling down. I have to admit, I might just miss those chipmunk cheeks a little! Don’t get me wrong, I love taking care of my boy, but it’s a whole different type of taking care when he can’t do much on his own. We try to get him to do as much as he can on his own, but when he can’t go up stairs or get in the car, it’s so hard to watch.
The hospital called today and set a tentative OR date for his VAD removal and CVC insertion. His VAD in his chest is not able to accommodate the medications needed during transplant, so they are replacing it with a central venous catheter. This gets us one step closer to transplant, but also one step closer to me being scared out of my mind (as if I’m not already). There is so much that his little body needs to go through in anticipation of the transplant – Full body radiation, brain radiation, surgery to remove his VAD and insert the CVC, treatment to eradicate his entire immune system and intense chemo. He’s had wonderful nurses this last week – I ask A LOT of questions and when they take the time to explain everything I need to know, it really shows how devoted they are, not only to the kids, but to the parents. To think all of this happens in the next 6 weeks, as we gear up for a long haul – it’s slightly overwhelming. We will be staying either on site in the hospital trailer or at Ronald McDonald house for the duration of his stay and perhaps after, as he is required to be near by the hospital for the first 100 days following transplant.
Ryan and I have to give Keian daily injections of GCSF , which is to help stimulate his neutrophil recovery. This won’t keep his counts from going critical (they are already there), but they will keep them remaining critical for as long, which therefore keeps the window of increased risk of internal infection smaller. They inserted a port like IV catheter that stays in his thigh and we inject the solution everyday at home. Since it is only stable for 5 days, we will return to the hospital on Friday for treatment and replacement.
Over the past 6 months, we’ve learned what is truly important, we’ve learned to prioritize and not to waste our time. We’ve been reminded about the true beauty that is revealed by friends and family in times when you need them most. We’ve learned it’s ok to be overwhelmed and sad, but to learn how to turn that sadness into strength that allows us all to endure the next day. We’ve learned how someone so small can become our biggest inspiration and we’ve learned that you can never say I love you, and mean it with every inch of you, too many times.
"Look to this day, for it is life. For yesterday is already a dream and tomorrow is only a vision. But, today well lived makes every yesterday a dream of happiness and every tomorrow a vision of hope."