Although it may not have been exactly what we had envisioned that Kai’s first birthday would be like, we laughed, played, and had just the best time!
Kai is right in the middle of round three chemotherapy and it’s been quite hard on him. He’s been pretty tired and he’s been sick a number of times, but that hasn’t squashed his spirit one bit! Kai is crawling, and pulling himself up on his knees, and trying his very best to teach us his little language!
Last week Kai’s immune system was strong enough to leave his hostpital room but not strong enough to start chemo, so we were discharged from the hospital. Rather than stay here at the Ronald McDonald house, we decided to make a run for the ferry and spend a few days at home. We were able to do Kai’s blood work at the Victoria General Hospital in the oncology clinic and that gave us five nights in our own beds!
Kai loved every minute of being unhooked from the machines and being free to roam around and practice his “moves”. He is still hooked up to his NG feeding tube, but we have been stopping the pump for six hours a day to give him total freedom from being connected. His appetite has been pretty good while he’s not getting chemo. It’s another story when he’s on chemo when he needs to be on his tube feed 24 hours a day because he won’t eat a thing.
We’re two days away from being finished this round of chemo and it just so happened that there is one day this round that he doesn’t have to get any chemo at all…and it happened to be today on his BIG Day!
Happy Birthday to Me…
Kai’s immune system is on the way back down toward zero, so we had the playroom completely sanitized and blocked off so that Kai could enjoy the space without risk of catching something. Although Kai is not supposed to be around too many people, that didn’t mean that the nurses and doctors could’t come in to sing happy birthday to our little superman!
They all gathered in the play room for the big event (and to share superman cupcakes)!!
Happy Birthday to the Man of Steel!
Watch the short video below.
…but it didn’t stop there!
Here are some photo’s that can tell the story much better than words!
Go Kai! He made short work of the cake, smashing it, throwing it in the air, and flinging icing everywhere. All that without eating a single bit! It was a healthy carrot cake that we had especially made for him from “cupcakes”. Of course mommy and daddy had to have a taste of what was left of it anyway 🙂
After demolishing his Birthday cake, it was time to open a few presents and have some play time.
Well that’s a pretty cool looking box!
Ok, what does it do?
The box was much more interesting…
After present time, Kai enjoyed playing with the train set and riding in his brand new car (thanks Auntie Kelly) that we brought over from Victoria with us last week 🙂
After all the excitement, our little superman was quite tuckered out and ready for some sleepy time. He wanted to keep playing but he was all played out 🙂
Our tired little superman!
Now that we are nearly done round three chemo, Kai’s immune system will come back down to zero and he will be “Neutropenic”. This is means that his Neutrophils which are the white blood cells that make up the majority of immune system are extremely low, or zero, and that he has no ability to fight infection. After each round of chemo it takes about a week for his counts to drop to rock bottom and that is a time when we have to be very careful. Kai cannot leave his room during this time because an infection can spread through his body in as little as 30 minutes. This is also a time when Kai is expected to catch something or get a bug. The second that Kai’s temperature raises above 38C, he is immediately put on a wide spectrum of antibiotics to wipe out any possible infection. In the oncology ward, they do not wait to see if he’s caught something, they act immediately and assume he has. Most of the kids in the 3B ward are extremely immunocompromised and waiting for results from the blood cultures isn’t an option.
After a few weeks, Kai’s immune system and other blood counts will start come climb back up as the bone marrow recovers. This is the limbo time between cycles where we play the waiting game and wait patiently (or impatiently) for the next round to start. The recovery period takes longer each round because the body gets fatigued having to repair the immune system over and over again. This is also why the chemo is so effective because the Leukemia cells have been repeatedly beaten down. Even though Kai was in remission after round one, we continue chemo to be sure that there are not any undetectable Leukemia cells hiding out anywhere. 50 years of data and research tells us that 4 rounds of chemo is most effective.
Kai has a bone marrow biopsy before each round of chemo to look for any sign of Leukemia, and we’re happy to report that he’s still in remission as of last week’s results! Go Kai 🙂
It’s been a really long road for us, but the light at the end of that tunnel is starting to get a little bigger. Another 4-5 weeks and we will be going into the home stretch as we tackle the 4th and final round.
Thanks to everyone for your Birthday wishes today and for all the cards, and toys, and delicious cupcakes (thanks so much Trish/Kevin/Paige)! We can’t wait to have a huge party when we’re back in Victoria!
Thanks for all the support 🙂
Happy Birthday, Kai ! So hard to believe you are already one year old and what a battle you are so bravely fighting. Think of you often… Hugs to all of you; thanks for your informative posts and pictures.
Happy belated birthday Kai…we both love you and are amazed by your strength, character and smiles! Chloe loves looking at your pictures and just comments “Awwww baby Kai, so cute!” We hope that things contunue to improve and you get to go home soon…and maybe come back to Powell River so we can visit…take care, big hugs and smiles from us. Love Cheryl & Chloe XOXOX
Glad you had a good day for your Birthday Kai. You certainly had fun with your cake.
Love and hugs to you and Mom & Dad. oxox
We loved the pictures and the update! Thanks for sharing Kai’s birthday with us via written word! The video was so cute, and good catch of the cake! Sending positive thoughts, hang in there and know that we are thinking of you three!! Xoxo Saccucci’s
Happy 1st Birthday Kai 🙂 you are sooo precious We enjoyed your video and pictures of your party. Such fun to get to be a part of it. Wishing you continued strength and good health. Love and hugs from all of us and sending many positive thoughts. Love Ida and Dave:)))
Hi my little man, hope you had a fun day, sure looked like it by all the great pictures! I will see you very soon, love poppa xoxo
Happy birthday Kai! Loved the video and pictures , hugs and kisses little Man!!
Happy 1st Birthday, Kai! It wasso good to see the pictures of Kai doing what all 1 year olds like to do with their cake. What a tough little fighter he is. Carson, thank you for your explanations of his treatment. Graham & Mike & I are all cheering for your little Superman.
Love & hugs to you three
Happy birthday Kai you sure are a little supperman xo
Happy Birthday dear Kai. Your mommy and daddy have done an excellent job of keeping me up to date with your progress. You are definitely a strong and positive boy surrounded with love. Keep on going! Love, Auntie G
Beautiful pictures – looks like Kai had a good day celebrating his 1st birthday!! Looking forward to seeing you all back at home. Sending lots of love and hugs.
oh HaPpY biRthDaY superman Kai!!!!!!!! so funny as all day yesterday i was thinking it must be Kai’s birthday soon . . . sooo great that you had a break from chemo on your b-day and looks like a very heart-warming, fun, cake splashing day! lots of love (even though we haven’t met) and blessings to you and Carson, Alicia and family, Tammy
Happy Birthday Kai!!! you are a true little Superman. Sending hugs and kisses your way.
I am tearing-up, my eyes are watering.with the newest updates, fotos, video.
Hits me in the Heart.
To our littlest and most precious cousin, we wish you the best birthday. There are so many people who love you, lucky boy !! We look forward to seeing you. Love C&G
Happy 1st birthday to our precious Kai. We love you and can’t wait for you to come home. You are such a strong little boy and we are so proud of you. We miss you very much and are so happy that your Mommy and Daddy post these wonderful pictures and updates for everyone to see. Stay strong Kai, everyday now you will get a little stronger and will be that much closer to coming home. We will see you very soon. Love and hugs from Grandma and Grandpa
Happy 1st Birthday dear Kai!!! We are so proud of your continued fight and strength, you really truly are a little Superman! Your happiness and curiosity shine through your beautiful little eyes. We can’t believe you are a one year old already! Time really flies, and soon enough you will be back home playing in your house again! We can’t wait for that celebration, and wouldn’t miss it for the world. We keep you in our thoughts every single day. xox ~ Thank you for this update you guys, and for sharing these special photos (and the little video was awesome!) Love Janna, Kyle and Scotland
Happy Birthday little man!! Thinking of you all!
Happy Birthday Tiger! You are one very special little boy. A true fighter. We wish you a speedy recovery so Mummy and Daddy can bring you home.
Just wanted to wish you a very HAPPY BIRTHDAY, and only good things to come your way
Happy First Birthday Kai!!!
I loved your a superman cupcakes and your Superman shirt.
Keep up the fight little superman. You are doing an awesome job!!!
Hugs to you and give mom and dad a big hug too!!
Love Louise
Awesome pictures! Enjoyed the read.
Happy birthday Kai!