Hey Everyone,
Well it’s definitely been a while since we’ve blogged with any update on Kai so I’ll make sure to fill you in on how things have gone since my last post just before the new year.
Transplant
On December 8th 2015, Kai had a bone marrow transplant to give him a brand new immune system. The idea behind a new immune system is for it to be able to detect any Leukemia cells that are missed by Chemotherapy and destroy them. Healthy immune systems are able to fight off Leukemia cells, but Kai’s own immune system wasn’t able to do this.
Transplant was a gruelling ordeal and Kai was very sick. There were some extremely scary times but our little fighter didn’t give up. We were under 1-on-1 care in our positive pressure room behind two glass doors until the beginning of February when we were finally discharged. For most of the transplant process Kai was bedridden and sedated because he was in a lot of pain and discomfort. For Christmas he had enough energy to sit up and open a couple of presents which was really great. September to February in the hospital full time was really tough on the three of us. Especially Kai though, it was a horrible experience.
Near the end of January and after weeks and weeks of weening Kai off IV drugs, we were abel to get him on to oral versions so that we could get him disconnected from his IV pole/machines and the many machines that were pumping the medications, transfusions, and chemo into him. Once he was disconnected, he was free to be discharged and we took the first chance to get the heck out of there.
We opted to rent vs staying at the Ronald McDonald House – it was a great place for Alicia and I while Kai was admitted, but we wanted our own space with Kai and to be able to stay clear people as Kai had literally zero immune system.
Main Street
We rented a house about 5 minutes away from the hospital just off Main Street and Kind Edward. It was a really great neighbourhood with tons of quiet places to take Kai for walks. At this point he was still extremely immune suppressed so he was wearing a mask out in public and we were avoiding all crowds. We had our rental until the middle of March. Kai was having some really bad flare ups of Graft vs Host Disease (GVHD). GVHD is when the new immune system attacks your own body because it’s not used to it. Kai’s GVHD took it’s toll on his skin and gave him horrible rashes that were brutally itchy. This caused a lot of issues with his Central line going into his heart because he would itch the dressing off. There were a number of times when he nearly pulled the line out. We were hoping to be home by Mid March, but we decided to extend because Kai just wasn’t ready. We went on the hunt for another place to stay and found a condo near Olympic Village, right across the street from Science World.
Living right downtown in the city was a huge adjustment for us. Lots of people, lots of noise, but the view was amazing and there was lots to do around this area with the sea walk, olympic village, and chinatown surrounding us.
In the last week of March Kai had some big tests. He had his Bone Marrow tested first to see if he was still in remission. This happened around 100 days after his transplant. Tests came back showing that his transplant worked and that he had 100% donor Marrow. Kai was also clear of any suspicious looking cells so he was officially still in remission.
The second of the two big tests was an MRI to check for any tumours. Kai relapsed back in September with a brain tumour (Leukemia), and back in December 2014, he was diagnosed with a tumour on his spinal column. The MRI of his head and spinal column came back ALL CLEAR – little rock star kicked butt on that one too 🙂
Kai also turned TWO! This year we were able to give him more of a party since his 1st birthday was spent on the Oncology ward with nurses and doctors!
Here We Are with Our Eyes Set on Home
The GVHD continues to be a problem for us, but we’ve been given the ALL CLEAR to come back to the Island. We are coming home with a very itchy little guy who’s now walking and talking up a storm. His hands and feet are completely raw from the GVHD, so he’s pretty sore, but on a lot of days that doesn’t slow him down much. He will still have his NG tube in his nose to help him with getting enough nutrients, but he is starting to eat more and more. We are hoping to be able to yank that tube out within the next few weeks. Hopefully being home and in a more normal environment will encourage him to start swallowing his food.
Kai’s real hair is coming back now! One of the anti-rejection drugs that he was on which helped control the immune system from coming in too quickly caused Kai to get really hairy for a while there. He literally had hair on his cheeks, on his back, his arms and he was sporting a unibrow. Most of that hormone induced hair has fallen out now and his real hair is staring to fill in. The most noticeable change that people will see in Kai’s appearance is his large scar on the back of his head from the Brain surgery. He’s got a lump that is full of spinal/brain fluid which is sometimes barely noticeable, but other times quite big. Eventually this will go down as his skull heals and any pathways from the inside of his brain to the outside close up. All of the doctors tell us that this will just go away one day, so we’ll take their word for it.
The other day Alicia and I realized that it’s been 17 months since initial diagnosis and we’ve been home for just 3 months during that time. Vancouver, BC Children’s Hospital, and Ronald McDonald House have been our second homes. We can’t wait to get back and see our dogs and our house and allow Kai to start making some friends (hint hint: play dates people!!).
Our next two years will have us over here in Vancouver once a month, starting with every two-weeks for the first month for blood work and follow-up with our oncology team. Everyday that is cancer free as we get closer to the 2 year mark post transplant is an amazing milestone – we’ve learned to take things one day at a time and cherish every moment. Thanks to everyone who has supported us and continues to support us. We couldn’t have held it together without the texts, and emails, and visits. We look forward to seeing everyone soon. Here’s to the next chapter for our Big Guy!
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Hi, my nephew also has AML His name is Kai too. He lives in Perth Australia. He is 3 years old and was diagnosed in 26th March 2015. Thank you for sharing Kai’s and your families journey. Sending all my love and best wishes ??
Look forward to playing with my granbaby at home where he belongs love Ba!
Gordon and I are thrilled to think you are coming home. We are so happy you soon will be settled back in the neighborhood. We have admired your courage and strength and are in awe of Kai’s ‘super powers’ in battling cancer.
Love to all…
Today our precious Kai is coming home. What a special day this is for our family
Grandma and Grandpa are waiting for you with open arms.
Thank you so much for the update and the great news–It will be so good to be back in your own home environment. A belated Happy Birthday to Kai–what a wonderful ‘happy’ cake you had. Happy Mother’s day to you this Sunday, Alicia.You’re a family of great strength and love and there is a lot more being sent your way. Love to all of you and all the family around you.
Kai, Alicia & Carson,
What wonderful news! You have never been far from our thoughts. We are thrilled that you can be home soon and look forward to seeing all of you soon. Love from all of us.
Wow, what an ordeal you have all been through. Kai is a fighter for sure. May the days ahead be much healthier and happier for you all. Reading Kai’s journey makes you realize just how precious life is. Thank -you for sharing it with us.God bless.
So happy for you guys and can’t wait to see you all! Big hugs!!
This is an amazing wonder child. Luv those pics. I am moved to tears because I was recently diagnosed with Stage 1 Clear cell. My prognosis is positive; grateful for each day. I haven’t gone through that much ordeal,and wen I get scared or sad I look at his pics, your story is an inspiration. Thank you for sharing…
Thank you for sharing – so great to hear all the positive progress. All three of you are amazing.
Also, what a cake!
HIP HOORAY
Thanks for the update
What wonderful news..thank you Carson for keeping us all updated…go and enjoy the beautiful sunshine…take care…here’s to superman Kai ????
So wonderful to hear such great news. You are in our thoughts and Happy Birthday Kai….wishing you all a happy return to your home. Hugs Krys Mike and Taylor
Wonderful news! You have all had a horrible two years. Here’s hoping there are no more operations for a very long time for Kai. What a brick he has been. Love & Hugs Barb & Wayne. oxox
So excited for all of you to be coming home – can’t wait to get some beach time in with Kai. Best Mom’s Day gift ever.
Big Hugs xox
Kai is an amazing little boy and you two are awesome parents…such a battle he and you have been through…I think of him often and Janna fills me in with news…hope to see you some day soon…life is so precious and Kai has never given up..luv to you all..Norm
thank you for sharing the whole story and the wonderful, good news! so happy for you to now be back in your own home and may you all be healthy and happy for a good long time. it is truly amazing what you have gone through and the spirit of Kai is an inspiration to us all. God Bless and i hope to meet Superman Kai some day soon!! Love and best wishes, Tammy
Wonderful news. Welcome home….
What an incredible journey… we are so proud of you all. You are an inspiration and such an example of incredible strength and courage. We are thrilled for your good news and simply cannot wait to have you all home!!! Love Janna, Kyle and Scotland
Wow, what a story and what a journey you all have been on. I was moved to tears when your mom learned of the clear MRI while we were away. It made our day!
Looking foward to meeting Superman
So happy for the 3 of you to be coming home! Wish we still lived in Sidney so we could get our 2 year olds together for a play. Maybe next time we are in town I will msg you Alicia and we can organize a beach date! Such a roller coaster of a journey but you have a little fighter on your hands and he is doing an awesome job at kicking butt!!!
I am so excited for all of you to finally be able to go home. I am looking forward to seeing pictures of you settling in at home. You have all been so amazingly strong through this difficult time and Kai has been a real little super hero!!!!!! The puppies will be so excited to,see everyone too! Carson I know your mom will be sending up dates and picture. Enjoy every moment.
Love and hugs
Lou
Great news! Can’t wait to see you all. Love and hugs!
Awwww such a journey you have all been on. So happy you are close to going home and can’t wait to see Kai and have Chloe play with him…we love you and send all our positive thoughts and hugs xoxox
How wonderful to hear such great news. What a fighter and such a brave little guy. I am so happy for you all to be able to resume your lives with your family and friends. Belated Happy Birthday Kai! What a great Mother’s Day gift for Alicia!
Love to all