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!