How We Almost Lost Our Son

Our son was diagnosed with Aplastic Anemia and his life was saved by an anonymous stranger.

Kazik3

Kazik when he was admitted to the hospital for the first time.

Our son Kazik (pronounced (Ka’ zheek) was born in 2009, by C-section. He was healthy and all was well with him until around age 2 when we noticed something was a little off. He was a lot more irritable than usual, not eating well, and getting a lot of ear infections that were difficult to treat. I felt something was wrong, but his pediatrician said he was in good health. We did our best to feed him the healthiest foods we could get him to eat, and gave him herbal and naturopathic treatments. Some things worked for a while but nothing lasted.

This went on for almost 2 years until he developed yet another fever. We took him to a walk in clinic where they said he had strep throat and a double ear infection. They also noticed that he had a lot of bruises and asked me if this was normal for him. I had noticed in the previous week or two that he had a lot of them, but most of them had related injuries, like falling down or bumping into something, so I didn’t think much of it. In fact I wondered why the doctor was asking, thinking he suspected physical abuse, which was definitely not happening. The doctor prescribed antibiotics and sent us home. After a few days, Kazik’s fever was still high and his pain was not any better. I also noticed that his gums appeared to have been bleeding, and his bruises were not healing. I thought that he must be having some kind of reaction to the antibiotics, so we went to the emergency room at the children’s hospital.

The first thing they noticed in triage were his bruises, just like the previous doctor, and they noticed tiny little pin prick sized red dots on his arms that hadn’t been there before. He was seen right away by a doctor and we were told he would need to have a blood test, which involved installing a peripheral IV needle into his tiny 3 year old arm. It was awful. He was so terrified. Nurses had to hold him down as he screamed, and I tried to keep him calm while crying inside myself. Little did I know, this would be the first of many, many times like this. I told him foolishly that it was going to be ok, that we could go right home afterward, and we were lucky because some kids have to stay in the hospital for a long time, but that we could go home. I was wrong.

They put us in a small dark private room while we waited for a doctor to tell us what was going on. Finally the doctor came and told us that his platelet level was extremely low and he needed a platelet transfusion right away. In fact, all of his blood levels were extremely low. She told us that something was wrong with Kazik’s bone marrow. Bone marrow is where our bodies produce blood. Without red blood cells, which bring oxygen to the rest of our bodies, he could be deprived of oxygen to his brain. Without platelets to repair tissue, he could bleed to death, hence the bruising, bleeding gums, and petechiae (the tiny red dots). Without white blood cells to fight off bacteria, an infection could kill him…..and he had a really bad one. Blood transfusions and IV antibiotics would keep him alive while the doctors figured out what to do next.

Kazik was admitted immediately. All we knew was that it was either Leukemia (bone marrow cancer) or Aplastic Anemia, which is bone marrow failure, usually due to an autoimmune attack. Both are equally bad news. He underwent a lot of tests and scans in the next few days. Meanwhile his infection was still very bad, and had spread throughout his entire body. A small tear in his rectum had gotten infected, and he was not able to fight it off. Every time he had a bowel movement, he was in agony. Finally after more than a week of waiting, we got the test results. It was Aplastic Anemia. His own immune system was attacking his bone marrow. Unfortunately we couldn’t begin treatment until Kazik’s infection was gone, and it had gotten worse. Having a bowel movement was painful, and he had diarrhea from the antibiotics, the illness, and the liquid diet that he was now on (through a nasal feeding tube), since he had lost his appetite completely. My poor sweet little boy lay in bed in pain, terrified to go to the bathroom. They considered surgically bypassing his rectum, with a tube and colostomy bag, but they decided against it because the risk of infection would have been too high. He also had a spot on his lung that they saw in a CT scan. They thought it was likely to be a fungal infection, so he started a course of antifungals as well. The most common cause of death in patients with Aplastic Anemia are fungal infections. We waited weeks, with no improvement. He just lay there watching tv; most of the time he didn’t even want to be hugged, which is usually what he wants more than anything in the world. It broke my heart.

After weeks with no improvement, Kazik’s doctors decided to give him a white blood cell transfusion, which is something that is almost never done, because white blood cells don’t live long, so a donor must give blood within hours of the patient receiving it. It is only used with patients who are not responding to antibiotics and who are at high risk of death. It was the first time they gave a white blood cell transfusion at this hospital in 10 years. He did 10 straight days, with one transfusion per day. They only had a few people on their donor list who were able to donate the cells, since it is collected in a particular way, unlike the usual method for blood donation. We had several friends and friends of friends with his blood type on standby, in case they needed to donate. We even had CBC radio asking to interview us to make a call out for urgent donors. Luckily, we didn’t need more. It didn’t seem to help much, at least not right away, but finally a week or so later, after 5 weeks in total, his fever started to go down.

Kazik1After 2 days with no fever, he had surgery to install a port-a-cath, which is a direct IV line to his heart, so he wouldn’t have to be poked over and over with a needle, since he would be needing a lot of transfusions and medications. Then he began immune suppression treatment called ATG to stop the immune attack on his bone marrow. It is a painful treatment which lasts a few days, followed by months of a different immune suppressing medication. After the ATG, we could at least go home, to wait. Treatment takes up to 3 months to start to work. There were a few problems though. He still needed a lot of medications and his rectum was still in a lot of pain so he wasn’t able to sit comfortably, he still wasn’t eating, and after lying in bed for 6 weeks, his leg muscles had atrophied and he was unable to walk. Even if he tried, his bum hurt too much. So we took him home, fed him through a tube, and continued giving him medication for the bacteria and the fungus, which were still there. He was also still on immune suppressing drugs, and since he still had no white blood cells, he had to be in isolation. He had no immune system. Any new infection was potentially life threatening, even just a cold, so we stayed home, and had very few visitors. His bum slowly started to improve, and he started eating again, and finally after 2 months of not walking, he stood up, with help, and attempted to walk. He took a few little steps on his now skinny, wobbly legs, and then lay back down. Every day, he walked more and more, until about 3 weeks later, he was able to walk on his own again. We went in to the hospital once a week for platelet and red blood cell transfusions. These kept him alive while we waited for the immunosuppression treatment to work.

After three months, there was no change in his blood cell levels, and the immunosuppressive treatment was deemed a failure. He needed a bone marrow transplant. We were terrified but felt hopeful. Usually the best option for a transplant donor is a sibling, but since Kazik was an only child, they went to the worldwide donor registry. Kazik was very lucky. He had 3 matches!

Kazik had more surgeries and tests to prepare for the transplant. The donor was anonymous, so the only thing we know is that he was male and 35 years old. We never found out where he lives or any other information. The only information he was given about Kazik was that he was a 4 year old boy with Aplastic Anemia. Kazik was admitted into hospital in December 2013, and began conditioning, which involves more painful immune suppression, and chemotherapy to kill off his remaining bone marrow and immune system. We spent Christmas in the hospital that year, which honestly wasn’t so bad. If you’re going to be stuck in the hospital, it may as well be during a fun time of year, when lots is going on. He got tons of presents, visits from people dressed as various cartoon characters, Santa Claus and some of the Montreal Canadiens. He was even on the news for the Canadiens visit, which you can watch here. He was in isolation, so the visit was through a window with a telephone to talk. P.K. Subban refers to Kazik by name in the video, (around the 1.27 mark) so you’ll know who he is.

Kazik lost all of his hair and had another feeding tube installed. He was in an isolation room, so everything that came into the room had to be washed first with disinfectant, and there was a lot of hand washing. The transplant itself was quite uneventful. The marrow looks just like blood. It goes in through an IV, just like a transfusion. We had a lot of support from family and friends which made such a difference for us. My mom drove all the way to Montreal from Toronto every couple of days to help me by taking shifts staying with Kazik in the hospital room. My husband had to remain working full time through all of this so my mom was a vital part of the whole thing.

About 2 and a half weeks after the transplant, Kazik’s brand new bone marrow started producing blood. He no longer needed transfusions. His counts were low at first, but they started climbing and after a couple of months, they were back to normal. He was cured! There are often some pretty awful complications that can happen with bone marrow transplants like graft vs host disease, where the new marrow’s immune cells start attacking the host, which can sometimes be very serious. Also, sometimes viruses, which remain in the patient from previous infections can reactivate and cause some problems, while the immune system is still weak. There is a form of Lymphoma which can develop after transplant as well. I was following several other patients on Facebook at the time, who were having transplants as well, and many of them didn’t do as well as Kazik did. Kazik was extremely lucky. It has been almost 2 years and he has had no problems, and is just like any other normal healthy little boy now.

I have recently applied to the bone marrow registry to have contact with the donor. There is a waiting period of one to two years after transplant—depending on the country you are in—until you are allowed to apply. We will wait and see if the donor has also applied, and if so, perhaps we will be able to speak with him, to say thank you for saving Kazik’s life. I am so thankful for each and every morning that I get to wake up and cuddle with my smiling little guy, and watch him play, and tell me all about dinosaurs and spaceships and all the other things he loves. Every jump, laugh and scream is one to be grateful for. The nightmare is over. Thank you anonymous donor, and thank you to the staff at the Montreal Children’s Hospital.

Kazik2There is a worldwide registry of bone marrow donors. You can register online here if you are interested, or google “One Match”. They send you a kit by mail, you swab the inside of your cheek with a cotton swab and send it off. It’s super easy. Then they contact you if they ever need you. Kazik was very lucky to have had 3 matches on the registry. He is of European descent, as are the majority of donors on the registry. People of mixed race are less likely to find donors unfortunately, which is why it’s especially important for people of mixed race to sign up to be potential donors. Please consider signing up to donate bone marrow or blood. Someone out there might need you.


Rowan Brewer is a full-time homeschooling parent, and an artist and silk screen printer. She also blogs about how she and her family do things differently to create a better future for themselves and the planet. You can find her blog, Better Than Thisor on Facebook at  or Twitter

 

 

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