Sunday, 31 March 2013

This is what awesome looks like...

I admit, I didn't really expect my post this weekend to be as positive as it's going to be. Keian is doing absolutely wonderful. He completed his last dose of cranial radiation on Thursday. The first time we walked into the room with him was one of the hardest things we've faced, well me anyways. To Keian, it was just like being brave for an MRI. My heart had been racing since I woke up that morning. I was able to keep things moving until they began to put him to sleep. He was laying there on a table situated just in front of a big machine that would circle around his head. When they put his mask on, I was completely taken back. It reminded me of the mask from the Halloween movies - I'm completely not joking...I swear that thing will keep me having nightmares for years. I had an overwhelming feeling - there's no turning back once this machine turns on. Of course, I know that this is Keian's only chance for a cure and given that information, there is no choice. I managed to pull myself together with the help of my littlest love and biggest love....until the big thick door closed and the green light above came on. Now, once he was wheeled out and he came back "my Keian", I breathed a sigh of relief. I really don't know why, as they have told us that any neurological side effects would not be immediate and would come on overtime. I guess my fear was that he would go in and come out someone different, someone I didn’t know. I can't describe the feeling truthfully. The rest of that morning he was incredible - full of energy and umpf...yes, that's a good word. He's always so full of umpf!!! By early afternoon, he started to complain of a head ache and began to get grouchy. Within an hour, he was vomiting and his faced was flushed. He had plans of where he wanted to go that afternoon, as it was the last day before admission. Those plans definitely weren't happening. He slept for a solid 3 hours and looked so worn down and sick while he slept. But, after a short 5 minute wake up, he was bursting through the trailer door to go outside with me.

The next morning I was concerned the same thing may happen after his 2nd dose, only worse. I spoke with his radiation oncologist and she explained that about 20% of kids have brain swelling after the first dose and that would be the cause of the symptoms K had. Day 2 went off even better than the first. When he walked in, the radiologists had decorated his mask with batman symbols on either side - he thought that was beyond cool. He also wanted to try without going to sleep, as he says he doesn't like the "wobbly medicine". Well, once again my boy floored us all! Stayed completely still during the whole procedure. I love how he asks; "How proud are you that I did it without going to sleep?". On his final day, the radiologist that will be doing his TBI next week brought us into the treatment room and asked K how he felt about trying the TBI without sedation. I wasn't really surprised when he said yes! They were beyond impressed - so were we!

We went early on Tuesday for radiation, followed by a trip to IHOP for breakfast – something that Keian has been asking to do for a long time. I was so happy to hear that, as his appetite had remained exactly how they wanted this last month. He's gained just the right amount of chub, so that he enters transplant as healthy as possible. I can't believe that my nearly 6 year old boy weighs in at 34.8 kg (kg is something I have really had to get use to, as I am so use to pounds – they also take temperature in Celsius vs. Fahrenheit, which definitely takes time to learn).

He also made a special request to me. He asked if I could crochet him a blanket. I can't believe all these years and I've never made him one. Well, this is a perfect opportunity! We took a trip out to Michaels and bought all the colours of the rainbow...literally. He wants a striped rainbow blanket! Don't ask me how he knows the little song that helps him to remember the order of the colours, but none the less, we got them all! On our way back to the hospital, K made reference to The Green Lantern and then Ryan started talking to him about how there were different coloured lanterns, as well. This then got me thinking about the meanings behind the colours of the rainbow. After reading up on it, it made me want to make the blanket for him even more.

Our admission day also brought on an unexpected occurrence - rather than being admitted in the early afternoon, they allowed us to go out for the evening and return at 8 pm to the ward he would be assigned to. We knew whatever we did with his last few hours before being in the hospital for months had to be fun! We took him to the Easter train and egg hunt at Stanley Park and to English Bay. I can't get over how much he loves the outdoors. If he could live outside, I think he would. Tarzan may just have a new side kick!

This week has been mostly uneventful - which is a great thing. He started his high dose of cyclophosphamide on Wednesday afternoon and his etoposide yesterday. He hasn't felt nauseated even once - they've been staying on top of it with 3 different anti-nausea medications, so it hasn't really had a chance to come to fruition. Aside from feeling tired in the afternoons, his little battered body still continues the fight.

Tonight, they had an Easter dinner for the families upstairs in the 3B playroom. We were lucky enough to be escorted up to get our dinner – when you are receiving chemo, you are normally not allowed to leave the ward, at least not unless attended by a nurse. It was so yummy and so nice to actually have a nice dinner that we didn’t spend hours trying to cook. Thank you to all the wonderful people that spent countless hours putting this on for the families that have to remain in hospital on a special day! Speaking of which, I saw a sign up on the ward saying that the 2B kitchen, which is where all the facilities for preparing meals are, will be renovated between April 5 and April 13. On one hand, this is a great thing as the kitchen badly needs updating, but it comes at a time where we would have needed it the most.

We’re sitting at day -5 today, which means there is only 4 days before we are transferred upstairs to get ready for transplant. I’ve met a few people that have been in transplant, but they have received their own cells, which is what they call an auto transplant (this type is not done with blood cancers). Keian will be an allo transplant, which means that they will be donated from another person. I’ve been trying to ask around to find someone that has gone through something similar to what we will be facing, but so far, I’ve had no luck. I’m trying to go into this with all the information I can absorb, but am also allowing the wiggle room for expectations to be exceeded or not entirely met. We live in the moment and we remain strong for the times when he needs us and when we need each other.

“Courage is like love; it must have hope for nourishment”

3 comments:

  1. I just can't imagine - I give you my prayers and send you all my love <3 <3 <3 <3

    Sheila

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  2. I send you prayers and happy thoughts every day.
    Keep up the strength and super powers!

    Jenn

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  3. Every time I read your blog by the end my eyes are full of tears an I think how lucky Keian is to have such an amazing Mom and Dad. I'm touched by Keian's bravery and the love that your family has. It's a terrible tough situation for your family. God must have a plan because he doesn't give out what a family can not handle.
    Lots of love and Prayers for you especially going into this next week!!
    Monique

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