Keian has once again blown us all away. He has surpassed all expectations, literally. The day he moved into step-down, he was up jumping around in his bed and walking in circles around the ward almost non-stop for 30 minutes. This all coming from a boy that was continuously bed bound for nearly a month. At first glance, there is no way of telling how sick he truly is. Other than his beautiful bald head, he looks so healthy, so vibrant and full to the brim with vigor and grunt. Yes, I said grunt! I’m talking about a kid that is already wrestling with his Daddy on the bed, one that is jumping from his bed to ours and one that has no problem with moving on a dime. He is literally a miracle in the making. His blood pressure is now under control, but he still requires daily medications to keep it that way. We have seen no sign of rash in the past 4 days, which means that his engraftment syndrome has likely diminished due to the steroids. They’ve switched him onto oral meds to get him ready for discharge. We have already been given a tentative date of discharge to be this Thursday. It’s almost surreal. We expected to be here for close to 2 months, but we are leaving 3 weeks ahead of schedule! I’m over the moon excited, but there is always that little voice inside that is cautious. Yes, I’m scared. Of what I’m not completely sure. We will still be coming back here 3 days a week, so I know he will be well taken care of and monitored. The most important thing is that come night fall, we will be fast asleep with our entire family under one roof, which hasn’t happened since January, except for a brief while after his admission for meningitis. To say that it’s been a long time coming would be an understatement.
On Saturday, we were given a pass to go to the park. It definitely tired him out, but it was so nice to get out and get some fresh air. It was the first time that he has inhaled air other than from his room in over a month. For the next 3 months, we will be very isolated. Isolated is great, it means we’re together. He is not allowed to go to any busy public areas. We’ll also be avoiding the beach and water parks due to infection risks being so high for him. His immune system will not function properly for nearly one year. The construction here on the hospital grounds has kicked up a notch or two and they don’t feel that the trailer is safe for Keian to stay in due to his newly forming immune system. They have even closed the patios to the children most at risk. The hospital has found us an apartment just behind VGH that we will be staying in for the next couple of months while Keian continues that last of his journey. The last of his journey…it’s still hard to get those words out of my mouth. He was moved into room 8 for step-down, which is the very room that he spent most of his initial diagnosis. I see this as a very positive thing – he started his journey in here and he’s ending it in here. Though I will not view his journey over until we cross that 5 year remission mark, we’ve made it through the first.
He has started eating now that the mucositis has subsided. I certainly wasn’t expecting that to get as bad as it did. There were points where he wasn’t able to speak or swallow his own spit. So far, he has avoided the NG tube and that’s become his goal…to avoid it completely. The decision will be made on Tuesday, but if he continues the way he is going, I will push for them to discharge us tubeless. It can always be inserted at a later date should it be determined he’s unable to keep up adequate nutrition orally. This would also give him some control, which he doesn’t have much of through this process. So far, the only physical affects that I have noticed due to the BMT regimen is his skin. Many areas have darkened and become tough like leather, the worst being his neck. I’ve been told this is likely the radiation and with proper care should diminish over time. If you’ve seen us in the summertime, you’d know how I joke about Ryan and his sunscreen. Being a fair-skinned ginger, he burns at the first sign of the sun. Casper. Yes, that’s exactly what he looks like. Thick globs of white sunscreen drip off him like cool whip melting off a spoon. Ok, maybe not quite that bad, but he could definitely pass off as Casper’s side kick. This year, Keian will be right along with him. The radiation that Keian had puts him at a very high risk for skin cancer. That being said, it is necessary for us to seek shade whenever possible and avoid overexposure. Once we’re all moved into the apartment, we’ll be sure to take his covered wagon out of storage. We got it last summer for days that he wanted to be outdoors, but just didn’t have the energy. This year, Joren is also old enough to sit in it with him, so it’ll be nice to be able to take them on walks. This will be a good thing being in Vancouver. I told Ryan the other day that it’s kind of growing on me and he gave me the look. I agree, I’m more of a country girl myself, but when you’re here in this city and you see all that it offers, it’s hard not to love something about it. It makes me want to strive to be healthy again. Healthy. That’s a word I would love to say and actually mean it. For my whole family, that is my one true wish. To be happy and healthy.
On Tuesday, Keian goes for a Bone Marrow biopsy. This is where they will look at chimerism, which means they are looking to see if the cells are all Joren’s or a mix of both Joren and Keian. We need for them to be all Joren’s. If they are a mix of the both, they will need to try to wean off the anti-rejection drugs with the hope that Joren’s cells win the fight. That’s all that needs to be said. I’m scared as hell, more so now than ever before. I may be scared, but I’m hopeful and my positivity is heightened every day I see this little boy smiling, laughing and living his life despite everything.
Keian has proven his strength over and over and I don’t expect that to stop any time soon. Keian, you are Mommy’s miracle.
Just checking in to see how your brave little man is doing! Can't stop thinking of you all :) So happy to read this awesome news! Praying for a great outcome with his biopsy!
ReplyDeleteLisa