Hi Everyone,
Today I wanted to blog and give you an update on how Kai has been over the past two weeks since his transplant on December 8th.
Kai sitting in his portable bathtub. We use plastic wrap and waterproof tape to keep his central line on his chest dry.
For the first 5 days after Kai received his stem cells, he was very well. There were no reactions to be concerned about and he held up really well to all the drugs that he was getting. That was all good until around day 6 when he started to get very ill.
It took about 6 days for Kai’s old immune system to completely be erased from his blood. Although his marrow was already gone, the blood still has some bits of immune system kicking around and keeping the body happy. When Kai’s immune system bottomed out, he immediately got very sick. Kai got something called Mucousitis which is when the mucous membranes all the way from your mouth, all the way to “the other end” start producing mucous out of control because there is no immune system to keep things in balance. Mucousitis is something that was expected but it’s incredibly painful. This was the most sick he’s been in the past year since he was initially diagnosed, pretty scary time and really hard to see your little guy in uncontrollable pain.
In the picture below you will see that we decided to shave his head because his hair was falling out fast.
Kai’s face is really swollen from the mucousitis. He keeps his mouth open like that because it’s too painful to swallow.
Kai stopped being able to talk, couldn’t swallow, and he had a very hard time breathing through all of the mucous. There were sores down his entire throat and he actually vomited up some parts of his esophagus at one point. Was definitely a scary time when he started puking up blood. The only thing that we could do was give him an intense amount of morphine to help keep him comfortable during this time and until his immune system started to come back. Even at the highest dose of IV morphine that Kai could get, he was in so much pain that we had to give him something on top of that called Ketamine. This was a pretty tough time for him, and for us to seem him like this.
Last Friday, we saw some blips in Kai’s white blood count which signalled that the marrow was starting to engraft. This means that the new stem cells were building new marrow and stating to push white blood cells back into the blood stream. These white blood cells aren’t considered “immune” system cells, but it was a first sign that things were happening.
Just today December 23rd, Kai got his first sign of immune system cells (neutrophils). He’s feeling much better and for the past day or so he’s been able to come off the Ketamine pain drug, and is starting to be a bit more like himself. The mucousitis is still there but we’re optimistic that the sores are healing. His breathing is a lot better now as well, although he still sounds like Darth Vader.
Kai is showing some signs of engraftment as he has some rash on his body, but we won’t know for sure if the transplant worked and whether the marrow is from the new stem cells, or his own immune system recovering. Hopefully by mid January he will be ready to get that test, and to also test to see if the Leukemia is still clear.
The main thing here is that he is getting better and there are signs of engraftment of the new marrow. He’s feeling a bit better each day and we couldn’t be more happy about that. Kai getting neutrophils today was an early Christmas present for us.
The next few weeks are going to be interesting as a lot of things can happen when the new immune system starts to build in strength. He’s on a ton of drugs right now. Here is a picture of the machines and the ton of lines that are feeding meds into his bloodstream.
The maze of machines and lines keeping the medications going at all times.
And here’s a picture of Kai using the suction to help suck out the mucous in his mouth. He’s feeling a lot better in this picture as it was just taken today. He’s quite puffy and swollen in the face due to the mucousitis.
We got a smile while he played with his suction tube that we use to help him keep his mouth and throat clear of mucous.
That brings you up to speed on how things are going over here. We will be on our own this Xmas as we’re on isolation, but we’ve got lots of presents and things for Kai to open on the 25th. Santa definitely will be making his way to our little transplant room at BC Children’s Hospital!!
We wish everyone a Merry Christmas and Happy New Year!
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Pingback: Homeward Bound…Our Sights Are Set! | Kai's Battle With Leukemia
Hi Alicia, Carson & Kai,
Glad to hear Kai is out of Hospital, it must be much nicer for you all. Kai will be loving his freedom to be able to explore the apartment and play with his toys.
Chloe often talks about Kai, sending him hugs from her.
We hope and pray his next major results are all good news.
Love & Hugs, Barb & Wayne. oxoxox
Our entire family continues to keep you in our prayers. Gayle Stewart-Loutit and family.
Our love and hugs to all of you, We think of Kai often so thanks for the updates and photos of him.
We are giving all our love and prayers to you.
Hi Alicia and Carson..Janna keeps me updated on Kai’s battle..what a year for him and you two..I think of you and Kai lots and hope for progress and a complete recovery for him…hard to read your posts and that he has the strength and will and you also to be able to write about it…love and healing to Kai and you guys..Norm
It’s great to see Kai smiling,such a strong little man…for everything he’s gone through ya couldn’t have picked out a better name…having this website is such a great idea,keeping everyone up dated…wishing you all a Merry Christmas & Happy New Year….
What a beautiful smile Kai always has no matter what he has been going through. Thinking of you all loads, and may each day bring bring good news
Thank you for sharing. I hope that Kai is through the worst now. Kai really is a Superman and it shows how amazing children are when they can find joy in such a little thing. God Bless all of you. Merry Christmas with all the love you can hold and wishing you a future of good health, happiness and everything you wish for. Love Tammy
Dear Alicia and Carson,
I wish you mutch power with the illniss of Kai. I pray every day to the Lord for healing for Kai. He is a Superman. Your uncle André Joh. Dirksen out of the Netherlands.
Thank you for the update Carson and Alicia. I am so happy Kai is now ahead in his recovery. I hope you have a good day tomorrow. I will be thinking of all of you. Please let me know if you need anything.
Sending hugs and love,
Merry Christmas
Love Lou
Kai’s definitely a little fighter which he has demonstrated time and time again over the last year. We are at the point where he’s got to slam the door in the face of this miserable thing, knowing Kai he’s doing that right now, all my love grandbaby, poppa xoxoxo
Happy to see smiles. thank you for keeping us informed on Kai’s progress. that strong little man has a lot of prayers and love going to him also strength, prayers and love going to you two, carson and alicia. Love you, Aunty Delena
Kai is one strong and courageous little boy! So glad to know there are signs of improvement. A true Christmas gift for you all. Sending love and kisses to Kai and will keep you all in our thoughts and prayers.
Super Man indeed! Love that smile, I’m glad Kai is feeling better,andMerry Christmas to you all.
:))
So happy to hear that Kai is feeling a little bit better ☺ Thanks to both of you for keeping us updated on Kai’s journey . “Merry Christmas” and here’s to a Great New Year…
Love Cheryll
So amazing and so happy to hear Kai is on the mend. Big Hugs and Merry Christmas to you !! Thinking of you and passing on wonderful wishes with love from Michael, Krys and Taylor
So happy to hear that Kai is getting better he is a Superman for sure!!! Wishing you all the best ,sending prayers of love,strength and support to all of you ❤
my prayers this season are for the brave little boy
I believe 2016 will be the greatest for him and he will never look back
all my love
marie walker
He’s so incredibly amazing, you guys! What a blessing! The level of strength and courage both you parents have shown is so commendable. It’s hard to learn about how sick Kai has been but so glad that things are looking better. Onward and upward they say 🙂 Merry Christmas to you all and can’t wait to hear how Santa spoils Kai! Love and hugs! Thanks so much for the update.. We appreciate it.
Wow, what a ride you have all been on. Love to see the smile on Kai’s face in that last picture; he must be feeling more like himself. What a trouper ! Merry Christmas to you three… You will be in our thoughts, as always, over the holidays. Big hugs ! Heather and Gerry
Awww so glad to hear of the improvement and wish we could see you for Christmas…Chloe and I have been working hard on a present for Kai which we will give to Grandma Lucy to bring to him:) Hugs for Kai from Cheryl & Chloe