I really had hoped last April that I would never have to update this website again, but here I am because in September 2015, Kai was re-admitted as the Leukemia relapsed.
In April last year we came home after 5 months at BC Children’s Hospital and Kai was in full remission. We had a great summer and things started to normalize a bit for us. We bought a camping trailer and spent all summer camping, playing at the beach, and counting the days as we got further and further into Kai being free of cancer.
We planned one last trip in September to take the trailer down to the Oregon Coast to spend time campaign at Long Beach Washington and Cannon Beach Oregon. We had an amazing time. Kai gained enough strength in his legs from being paralyzed last January and he started taking his very first few steps on his own! Things couldn’t have been better and we truly cherish the memories that we had for over 2 weeks on our trip.
As our trip came to an end, Kai started waking up at night and being restless in his sleep. After just two days of him waking up at night screaming, we decided to pack up and make a quick dash for Canada so that we could be back in the “Safe Zone” for care in case we needed it. When we returned home we took Kai straight into the oncology ward where they are familiar with us at Victoria General Hospital. Immediately his blood was checked for Leukemia but it was all clear. We checked again, and again for a few days and it remained clear. Doctors ordered ultrasounds to look at Kai’s stomach and bowels to see if there was anything showing that could be causing him pain. After a few days Kai was extremely lethargic and it got to a point where we could barely keep him awake. Something was happening very quickly but it was unknown what could be happening.
One of our oncology nurses (Sarah) had a feeling that something just wasn’t right. We were admitted to the hospital where we spent one scary night in the pediatric ward. The next morning Kai would barely wake up. Sarah came down to the ward, took one look at him and took complete charge of the situation and advocated for Alicia and I who wanted desperately to get over to BC Children’s hospital. Air transportation was arranged and I left Alicia and Kai at the hospital while I dashed for the Ferry to meet them at the hospital. Sarah, if you read this, you saved our little boy’s life that day…Kai couldn’t have waited any longer and we thank you so much for following your gut and advocating for us!
When I was on the ferry in the cafeteria I got a call from one of the nurses on the Pedes ward. Kai had nearly stopped breathing for a period and was rushed into an emergency CT scan of his head.
“I’m so sorry, but they found a large brain tumour in Kai’s head and he’s being rushed over to have immediate brain surgery”
I was definitely not prepared for those words – not the news that I wanted to hear or that I would want any parent to have to hear…ever.
By the time I arrived at Children’s, Kai was already in surgery.
The tumour was large, it was bigger than a golf ball and it was pushing on his cerebellum. This pressure was causing Kai’s brain to lose the ability to send signals to the body to function properly…and to breathe.
After 7 hours of surgery, Kai came out with his head all wrapped up with drains coming out of his head. We spent 5 days in the ICU where a nurse watched him 24 hours a day (literally, they sat there by his bed and monitored him).
The tumour was removed and sent off for testing. Thankfully, it was an AML (Acute Meiloid Leukemia) tumour, so Kai had relapsed vs had another type of cancer. If you have read my other blog posts about Kai’s disease, his Leukemia likes to form tumours like the one that paralyzed him for a period. This was the same.
After more tests, it was found that Kai’s bone marrow was still clear as well, which meant that all the treatment that he had before missed a few cells in his Central Nervous System (Spinal Column and Brain). Those cells formed a tumour.
Treatment
Kai’s treatment had to be customized because the spinal fluid (CSF) had to be targeted with chemo. The body does a very good job at keeping the fluid that surrounds your brain and circulates in your spine separate from the rest of the body. This is why the Leukemia was only found in this spot. This also means that it’s harder for Chemo to make it’s way in and fight the disease.
It was decided that Kai would undergo 2 rounds of heavy chemo given by IV, but also he would have chemo injected directly into his spine on 10 different occasions to directly target the cells in the CSF. Following the 2 rounds of chemo and spinal chemo procedures Kai would be prepared for a Bone Marrow transplant to give him a brand new immune system that will hopefully detect any remaining cells and recognize them as being foreign…and get rid of them.
Chemo Rounds 1 & 2
The first two rounds of chemo started just 5 days after Kai had brain surgery. They didn’t want to wait and let the cells that were “disturbed” from the surgery to float around for very long and find homes elsewhere in his body.
A quick note: you will see in the pictures that Kai didn’t lose his hair. Apparently it’s not uncommon for kids who relapse to lose their hair. Transplant and the pre-transplant chemo drugs he gets are another story. We expect his hair to fall out pretty soon here.
Kai handled the first two rounds of chemotherapy really well. He lost a lot of weight soon after we were admitted because he had some trouble digesting his formula that he gets through his NG tube. He lost 5 pounds which is a lot of weight for a little guy. At the time of writing this, he’s gained a lot of the weight back.
Kai was just starting to take his first steps while we were away on holidays just days before we were admitted in September but he didn’t walk at all during round 1 because he lost so much strength. He surprised us one day when he was well enough to take him to the playroom. He pointed at the floor and we put him down and he tried to take off walking (assisted by Mom & Dad)! He remembered!! It was such a cool thing to see.
After round one Kai’s Spinal Fluid was showing no signs of leukemia, but before round two started, it shows some suspicious cells which were Leukemia cells. That was hard news to take because we so badly wanted him to stay in remission after the initial round of chemo. The Doctors were not overly concerned, so we went at it again in round two and really focused on the Chemo injections into the spine. This time the chemo got all that was left and his spinal fluid was clear going into Transplant. Kai was considered in FULL REMISSION going into the transplant round of chemo drugs.
Transplant
I’ll talk about what Transplant now so that everyone knows what we’re talking about when we say “Transplant”.
Part of Kai’s treatment is to give him immune therapy which means they will completely remove Kai’s immune system by killing his entire bone marrow. They will then give him stem cells from another person so they can form new bone marrow.
There are two reasons that a transplant happens.
- A healthy immune system will be able to fight off Leukemia cells because it will see them as being foreign and “bad”. Kai’s immune system looks at Leukemia cells then asks them out for a beer and nacho’s. In other words, Kai’s immune system thanks that Leukemia cells are perfectly fine and that they should be left alone to multiply.
- The pre-transplant chemo drugs that Kai is getting are extremely heavy and once they are given, there is no turning back and a bone marrow transplant is 100% required. These drugs do very well at penetrating the Central Nervous System and get into the brain much better than the other chemo that he has got before. Kai needs this chemo and this means transplant is necessary.
So, Kai’s getting new bone marrow so that he could have the heavy duty drugs, plus give him an immune system that will hopefully see any remaining bad cells, and destroy them.
Kai’s new immune system will come from a Baby’s umbilical cord. Rather than sucking out the bone marrow of a healthy donor, Kai is getting stem cells directly from a perfect match Cord. When I say “perfect match”, I mean that it’s matched perfectly to Kai, his blood type and his DNA makeup. The better the match, the lower risk of having side affects when the new immune system starts to make a home in Kai’s body.
There are a lot of risks with Transplant, but for Kai, and for many people with AML, a transplant is absolutely necessary to achieve a full cure.
Part of Kai’s pre-transplant protocol was a very low dose of Total Body Radiation. Because Kai relapsed in the CSF, radiation was definitely on the table as a course of treatment. The problem with radiation is that Kai is very young and radiation can cause many long term side effects. The good thing is that AML is very very sensitive to radiation, and Kai was able to get 1/3 the dose that a child his age would normally get if they had other cancer. Yesterday Kai had two separate sessions of total body radiation at the Vancouver Cancer Agency.
Yesterday at 2:30pm, Kai had his stem cells. For the past 8 days, Kai has been getting a cocktail of heavy gun chemotherapy, steroids, immune suppressants, radiation, and other drugs to limit side effects associated with transplant.
Here is a picture of Kai getting his new immune system. It took about 15 minutes for 50ml of stem cells from a babies umbilical cord to flow into Kai’s blood stream. The stem cells immediately make a home in the bone marrow and start dividing. In 3-4 weeks we should start seeing the new marrow push out immune system white blood cells (neutrophils) into the blood stream.
Between now and 3-4 weeks time, Kai will bottom out with no immune system. He will get quite ill and be very susceptible to infections. This is why we are now living in a positive pressure room that is behind two glass doors to the “outside world” (the Unit).
Our next month or so in isolation in the transplant room will be followed by stepping down into a normal room that we have spent 9 months in already, then if everything is going well, we will be able to be discharged. Kai will need to be in isolation for 100 days from December 8th, but we can keep him isolated outside the hospital. We have rented a house for February and March in Vancouver so we can be just a few minutes from the hospital.
This brings you up to speed on where we are with things and how our little Superman is doing. He’s got a road ahead, but it’s one that we have no doubt he will conquer.
Thanks to everyone for the continued support and for all of your offers to lend a hand. We’re doing ok over here and I hope to be blogging again in the next few weeks on how Kai has done post transplant.