Keian was so excited for Christmas Eve to come - it actually reminded me a bit of those movies you see where the kids keep repeating "Are we there yet?!". When we were little, both Ryan's and my family did some special little things that we chose to continue with our own. When Ryan was growing up, his family use to drive around to look at the Christmas light displays on Christmas Eve - this is something we created to be a Blundell family tradition beginning last year. My favourite thing ever when I was Keian's age, and well to be honest, well into my adulthood, was that I was always allowed to open 1 present on Christmas Eve. It was always the same thing - Pajamas! Beginning on Keian's first Christmas, he has sat in front of the tree and ripped open a present containing...yes, you guessed it, Pajamas! This has since become one of Keian's favourite traditions!
After baking cookies for Santa and tucking the boys in for the night, we awaited for Santa's arrival - he must have had his elves working night and day. Santa must have also known that Keian has his own "team" that stands strong behind him!
Christmas morning wasn't quite what I expected it to be. I expected Keian to be jumping up and down screaming in excitement. Though he was ridiculously excited when he walked out of the bedroom and saw that Santa had come, he was more concerned that everyone else got their presents first. And yet another reason he reminds me of myself - though I always loved Christmas and honestly the gifts that came along with it (what kid doesn't), I got so much enjoyment out of watching others open their presents first. Keian kept saying "I'm so excited to see you open your presents!!"
The meaning of Christmas and the memories from this year will remain in our hearts forever. I can't believe how lucky I am to have 2 amazing, strong, beautiful, crazy boys to call my own. They both help me to strive to be the best mother I can be
We were also able to take a bit of a break from treatment, as our first appointment at the hospital following Christmas was yesterday. Relaxing was quite easy, as Keian's energy seems to have gone missing. Lots of cuddles, which I certainly never complain about. Though this Dexamethasone is definately doing it's job, it's doing numbers on my little boy. His mood is unbearable at times, his appetite is through the roof and then some (this is a good thing, as it helps him to gather strength), his skin is like leather on his feet and the swelling in his torso and classic 'moon' face have appeared rather quickly. It's hard to wrap my head around the drastic difference a short month can bring. He has recently been starting to complain about the pain he's feeling from the tummy distention.
A lumbar puncture was redone and his CSF came back clear again! Yay! It was an unexpected long day yesterday, as his HGB was low and required a transfusion - tag another 4 hours onto the already long treatment day and you have one very bored boy. He returns next Friday for the last chemo treatment and lumbar puncture for this re-induction phase. It's hightly likely that he will need another transfusion -platelets (which help with blood clotting). He's been getting alot of nosebleeds, which is one of the few signs to watch for. He will also be getting a repeat bone marrow biopsy to ensure that things have remained in remission within his marrow. He has also been complaining that his throat burns when he drinks certain things - namely orange juice. We've also noticed he has started to develop sores on the insides of his cheeks. Mucositis, the Oncologist tells us. Although the two sores present in his mouth that are visible look as though they are healing, this won't be the end. Nearly every treatment Keian will receive in the next 2 months will lead to increasing sores, in count, as well as severity.
He's gained close to another 5 pounds this week, surpassing my 10 lb gain goal I had hoped for (now, it's time to up that goal to 15! - seems weird working so hard to get him to gain weight, when I've attempted to take weight off myself throughout my entire life)
We've yet to have anything set in stone, but we now have a tentative plan for the 2 months following up to transplant. Beginning as soon as next Tuesday, we will be admitted for the first of our 5 day hospital stay. He will have two consecutive consolidation phases, which is to make sure that the remission is consolidated and that he remains in remission prior to transplant. Each phase is 3 weeks, but if his blood counts are not at the required level, that will be delayed. The first 5 days of each cycle will be spent in hospital, due to the potency of the chemo. During these 2 cycles, Keian will be undergoing brain radiation, to attempt to kill the remaining leukemia cells that may be hiding in his CSF - unfortunately, due to his early relapse, he will require a larger dose than originally anticipated. He will also require surgery to remove his VAD and replace it with a different type of central line that will allow the numerous medications required during transplant. He will then be admitted a week prior in order to receive full body radiation and administer drugs to entirely strip him of his current immune system - this will be done in the hopes that it will prevent his body from rejecting the new cells. When Keian is ready to receive the cells, Joren will be admitted to the hospital and will undergo bone marrow retrieval - he will be going under general anaesthetic and will stay one night in hospital. His Oncologist assures us that she will try her best to get Joren a room in transplant isolation, so that we will be able to be with both of our boys. They tell us Keian's hospital stay will be a miniumum of 5 weeks - but nearly all transplant patients will need to be treated for atleast 1 serious infection during their stay (which would extend his stay) We are to be expected to be in hospital for approximately 2 months,but have been told to not expect anything with regards to our length of stay. Luckily, they do have a trailer on site, that we will hopefully be able to gain access to for the first 30 days, so that both of us, as well as Joren will be able to be close. Things are definately moving much faster than I expected, as Keian could be receiving his new cells as soon as the first couple weeks of March.
With 2012 coming to an end, we received our final less than favourable news. Keian has developed Peripheral Neuropathy - a direct side effect of Vincristine. He has decreased reflexes, decreased strength, muscle atrophy (wasting of muscle) and foot drop. Most of the time these effects are temporary, but once they come to head, they will take a long time to subside. He's been complaining of leg and foot pain, which is now explained by this diagnosis. I've been massaging his legs daily for the last couple of weeks, but now that I know what we're dealing with, I've started some strenthening and stretching routines with him until Physiotherapy sets a plan for his treatment. It's times like these that we have to try to remember - Worry does not empty tomorrow of its sorrow, it empties today of its strength"
"When life knocks you down, you have 2 choices. To use the little strength you have left to fight your way back up, not knowing when or why you could be knocked back down again, or just stay down. I guess that is why we call it courage, the courage to stand back up when life gives you hundreds of reasons to stay down"