9 February 2013

Off to a strong start...

We were able to spend 5 days at home, as we were given a multiple day pass - those days went way too quickly. Tuesday snuck right up and we were packing for a much longer stay than we've been accustomed to. Our truck was literally packed to the top with those 'necessities' - ok, maybe not what some would consider necessities, but things that are definitely essential for Keian! Posters of superheroes, his Team Keian Kaptain Lasers T-Shirt to hang over his bed, some familiar blankets and stuffies, a ton of craft stuff to keep him busy on these long days and the Wii u. Oh, and I even get to stare at an angry red Ninjago alarm clock:).

Tuesday started the first of the 4 High Dose ARaC chemo administered over 2 days (just like last week). The difference compared to last week is that his counts have now crashed - in fact, the lowest yet. This is defininitely what they knew would happen, so now it's a waiting game and we hope that his body spares him of infection. We need A LOT of thoughts and prayers for this, as with no WBC's, his body cannot fight. He was placed in protective isolation on Wednesday and will remain like that until his counts rise, which will be atleast 3 weeks.

We are so thankful that we got an average sized room - the problem with hoping for a large on is that when they are busy, they have no choice but to double up. I don't know how another family could deal with my 3 boys' craziness...ok, maybe I'm a tiny bit crazy myself. He's so used to being confined to his room, that when the nurse called him across the hall to take his weight, he came to the door and peeked out like he was looking at surroundings that made him uneasy. The Doctors are quite surprised at his energy levels - usually when receiving this chemo and counts being as low as they are with Keian, kids are lethargic and tired. Not Keian, atleast not yet anyways. He's bouncing around and off the walls! Ryan had to stay 2 nights in a row this week, as I felt sick and had to stay away, but the first night I did stay, the Nurse told me how nice it was to hear laughter coming from our room.

We have been getting worried about how Keian has been when we're in clinic or admitted. He has been very withdrawn and phasing out his care givers when they are trying to communicate. I think he's so busy being the brave boy that we've seen him be, that he sometimes forgets that it's ok to be scared - we'll always be there for when he's scared, uncertain, sad or happy...might cover it all better to just say we will ALWAYS be here for him no matter what!ut. This week though, I am extremely happy to say he has done a complete turn around - that's not to say there won't be anymore of those days ahead, but it means that all of his care givers can finally see the goofy, fun-loving, loud and proud boy that we see almost everyday! He is now on full feeds with the NG tube - he's trying, but he hasn't been able to eat even just one bite of anything over the last 3-4 days. We get him things he asks for, but when it gets placed in front of him, he gags or says he just can't eat it. His taste has changed so much from the chemo - even drinking chocolate milk, he says is too 'sour' tasting. All these foods that he once loved, taste horrible for him. Despite the fact that he is on full feeds, he is feeling great! He has been sick only one morning a handful of times and he is now completely off the ondans for his nausea. They reinserted the port for his GCSF again to stimulate his cells to regenerate...day 2 and about 20 more to go! So really, aside from the usual stress of being a 'cancer family' and everything that comes along with it, the last couple days have been pretty low key at the hospital and low key is exactly what we want it to remain.

Keian loves playing mailman - he wants to take the key and pick up the mail everytime we mention it. He also LOVES receiving mail of his own. While he is set up in the hotel of health (sounds much better than hospital in my mind), he is able to receive mail! Cards or notes of encouragement or even just a little hi or a picture would we wonderful! I'd love to create a wall of hope.

If you'd like to send something to him, you can send to:

BC Children's Hospital Oncology 2B - Keian Blundell 4480 Oak Street Vancouver BC V6H 3N1

"When life gives you 100 reasons to cry, show life that you have 1000 reasons to smile"

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