This morning at 1:20am Kai received his last chemo drug and we are now officially complete with round two chemotherapy.
During round one, we found out that there were signs that Kai was responding to the treatments very well. After only a few days of chemo his Leukemia cells had diminished greatly and the cocktail of four different drugs was working. This was great news, but it was early on and we were still 3-4 weeks away from doing a bone marrow test to see if the origin of the Leukemia was cancer free.
The bone marrow biopsy happens 3 weeks after the last day of chemo so we were pretty nervous about things…ok terribly nervous to be exact. When the bone marrow initial results came back the day after, all was looking clear. But there was one more test that they do by sending the marrow to the United States to have more in-depth testing done. Three days later we had a visit from our doctor and and they had a smile on their face.
“Kai has no detectable Leukemia in his blood or in his bone marrow!”
WOW…
They refer to Kai now being in remission and we are now proceeding with the four rounds of chemotherapy on the “low risk” arm of the protocol. This means that Kai gets very similar chemo drugs as the first round and is not being considered for bone marrow transplant at this particular time (YAY!).
With round two just finishing today, we are in the limbo period between treatments where Kai’s immune system will go back down to zero as the chemo does it’s work. We start round three once his blood counts come back up to a certain level. Basically, as soon as he gets back to “normal” levels in his blood, we hit him again and take them all back down to zero.
Two more rounds to go…
Kai is feeling pretty good at the moment. His appetite is hit or miss, but that is just part of the side effects of the drugs. He’s playful and happy for the most part, but tired a lot of the time. He just started sitting up on his own from a lay down position which is AWESOME to see! This, of course, brings a whole new set of challenges for us with his central line and NG tube in his nose. He is constantly getting tangled up!
Alicia and I are doing well and couldn’t be more happy with the progress so far. We still have a long way to go because each time Kai’s immune system and blood counts will take longer to recover that the last. Kai is doing well, he’s happy, and he’s back to his old self which makes us feel a lot better.
We also moved to a new room last week which means we have a view of the outside world. Previously our room was looking into an inside playroom. We’re here for the long haul, so we snagged a better room as soon as one came available.
So, until next update that’s about all for now!
Thanks for all the support and comments that you have been leaving. We love to hear your words 🙂
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Hi Kai
I am an old friend of your great granddad Ron
Sweetheart,You are one handsome boy andI know you will be better soon
my thoughts and prayers are for you and all your family
Hi Carson, Alicia and Kai…..
We have been thinking of you so often and all that you are going through. Not an easy journey. Kai is obviously a brave little fighter It is so great that you have set up this web page to keep all of us out here informed of the progress. And this last news is just so wonderful!! Our thoughts and prayers go out to all of you. Stay strong and be positive.
Love and hugs to all of you.
Norma and John
Hey guys,
Just wanted to share our enthusiasm and excitement about the positive news. We’re so happy to hear that Kai is responding so well to his treatment. We are thinking about you three and are here if you need anything. Stay strong and give Superman Kai a big squeeze for us. xoxo
Hey Guys, thanks so much for the support and for keeping us in your thoughts! We’re staying strong and our little boy is kicking butt…along with learning to crawl, stand up, and make a huge mess when he eats! Cant wait to see you both this summer sometime 🙂
I was very sorry to hear about what your family os having to deal with. Anyone that has had children of their own understands the feelings involved. Reading the page i see he is responding well, what great news. So happy to hear. Wishing Kai a full recovery ;-). Hugs to everyone xoxox cindy kirsten and brayden
Hi Cindy, thanks for the kind words and support. It’s all been an experience that words cannot describe, but we’re positive, our little guy is doing great, and we can see the light at the end of the long tunnel. Hi to Kirsten, Brayden, and your Mom!
So happy to hear the positive news. Keep up the good fight Kai. All of us in Nova Scotia are sending you hugs.
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Such wonderful news…. Halfway there. We are thinking of you and always sending positive thoughts your way…
Beautiful news for a beautiful baby
Thanks for sharing! We are so happy to hear Kai is responding well! What an amazing little boy you have! We think about you guys often. Xo Trish, Kevin & Paige
Thanks so much guys! Kai’s new favourite toy is his train set. He loves taking off all of the blocks and throwing them on the floor for daddy to pick up and wash. Anything that touches these hospital floors gets a deep clean! He loves it. Pretty sure he does it on purpose just to see me work! You should see him do the windshield wiper on his high chair when full of food!! Can’t wait to see Paige, she’s getting so big 🙂
We’re so happy with all this positive news. Big hugs for Kai and we want to be included in the list of family sending you love.
God Bless
Janet & Dick
Hi Kai, Alicia and Carson…. so glad to see you are getting better.. won’t be long you will be out chasing the dogs.. We love you buddy… be strong Alicia and Carson..We will be trying to get out this summer to check up on you 🙂 love you .. great grand dad and nanny..
Hi Carson, Alicia and Kai
I am so very happy to hear this news. Please give Kai a big hug from me.
I am here if you need anything. Please let me know which day would be good for you for me to drop off a meal for you.
I have your Christmas card on my mantle and it will stay there until Kai goes home!!
Take care
Love Louise
Thanks so much for the support Louise! We are hanging in there and are now waiting until Kai recovers from the chemo enough to get the next bone marrow biopsy. Till then we will be playing lots of games, learning new words, and sticking it out together.
so so glad to hear the good news, I think of you all so often and always sending out prayers. Keep strong and I look forward to hearing from you. hugs to little man Kai.
Fantastic progress so far! Keep on kicking ass kai! The tangled up comment made me both laugh and feel sad… I can’t imagine what it’ll be like up as he learn more and more new moves 🙂
So glad to hear you got a new room and can all see outside to see the sun or rain!
Well done superman Kai, your furry brothers also send their love as well, and can’t wait for you to get home. Especially if you drop food on the floor!!!!:>
Rosann
Our furry little guys are going to have a shock when Kai makes his return. Won’t be long until he’s chasing them around! Thanks so much for keeping our fur babies happy!
Couldn’t be happier to hear the good news. “Way to go Superman…” Can’t wait to see your back at Dolphin. Love Mike, Sylvia and Antony
We can’t wait to be back on Dolphin, that day cannot come soon enough! Thanks for the support, hope all is well at home 🙂
We are both VERY happy with the news and Kai’s prognosis. A positive attitude is a powerful tool! He clearly is a strong little guy and has a bright future.
Wonderful news ! He is a little fighter for sure. Hugs and kisses to Kai. We are thinking of mummy and daddy too as they go through this ordeal so hugs to you both!
We are very glad to hear this good news. Half way there how wonderful. Love & Hugs from us all. Barb. oxoxox
So glad to hear the positive news. Way to go Kai!!
Thanks for the support Vonnie, Kai is a fighter and he’s being very brave through all of this. He is growing and learning new things everyday.
Kai is such a strong, brave little guy. I so look forward to planning a trip to Victoria when he is home and healthy and seeing him in person. He is in our thoughts and prayers daily. Much love to you all !!!!
Vonnie