So here it is. In writing for anyone to see. Most of our closest friends and family know already. It seems so odd to be announcing it. Writing about it. Sharing it with the world at large. We just didn’t know how to deal with it. We were shocked… Overwhelmed… Still are. Still trying to navigate it all.
Hemophilia. “The royal’s disease”. One of the most famous royal’s with it being Russian Prince Alexei Romanov, son of Tsar Nicholas II, great-grandson of Queen Victoria. But, Tristan? No. Not Tristan… Tristan!? What???
Hemophilia is a rare blood disease that mainly affects males. It is a genetic mutation which is inherited. It is very rare; occurring in about 1 in 10,000 births. It affects the blood’s ability to clot and it is considered a life threatening disability.
How did Tristan get hemophilia? It still seems surreal to even ask that question. All the confusion started around the beginning of 2016. It was just another morning, prepping Tristan for preschool… then I noticed he was limping a little bit. After checking him out, I noticed his knee was swollen, but there was no bruise. Jeff took him to Emergency. One X-ray later, it was determined that Tristan had fluid around his knee, likely blood. They thought he had hemophilia. Down to SickKids for more tests, they said. On Friday March 18th, at SickKids Hospital in Toronto, Tristan was diagnosed with Severe Hemophilia, Type A. I was told I was the likely carrier. Later, my genetic test results confirmed this was the case. My mom’s genetic results are still to come back from the lab (it takes months) but her blood tests show she is likely not a carrier. So, I found out, this means that, when I was conceived, there was a genetic mutation and I randomly became a carrier of hemophilia. Although I bruise easily, which I now know is common in female carriers, I otherwise show no signs. Tristan being diagnosed with this illness means it would possibly affect his children as well, and theirs… Now we see… this diagnosis means the mutation has the potential to exist in our family for generations to come. Great. I’m a mutant and I’ve passed the gene onto my family. Awesome. Just what every loving mother wants to hear. We all have our crosses to carry.
What this translates to for Tristan… Every week, we drive to SickKids Hospital so that Tristan can receive an infusion – a needle into the tiniest little blue vein in his still very small hand – and receive into his blood the synthesized protein his body doesn’t naturally produce. This is so that he is protected from simple things like jumping or falling… things that other people do and easily recover from. Internal bleeds are the biggest concern. Joint bleeds, like the one he had in his knee, are common in those with hemophilia, and the damage from these can be crippling. Tristan is protected from bleeds for about 4 days after an infusion. So even with all these efforts going to and from the hospital, he’s still not protected all the time. Sometimes, even after we make the effort to go, Tristan is putting up such a fight that they miss the vein, and have to poke him again. Sometimes we have just left without the treatment because another poke just wasn’t going to happen… He screams. We feel like screaming too but we’re supposed to be strong for him, right?
They say that one day, we’ll be giving Tristan these shots ourselves, and then when he is 11 or 12, he’ll learn to administer his own treatment at a camp for kids with hemophilia. We got invited to a hemophilia conference at the Fairmont Royal York in Toronto. There, we heard that maybe one day there will be another answer, like gene therapy, taking away the need for these weekly shots. We also find out there that some parents of kids with hemophilia give their children shots everyday to make sure they are always 100% protected. Now we’re back at the hospital again; all of a sudden there’s government and medical forms in front of us to fill out. A lot of them. All of this information and paperwork comes flying at us. I’m still sorting through the last of it over a year later….
So this was the reality we got punched in the stomach with, right after having a baby – little Caelum – born with his own difficulties. Our sweet little baby boy was born on November 14th, 2015 with a stenosis in his gastrointestinal tract. Awesome. Yes. At 10 days old, still with no idea at that time what we would be going through with Tristan soon after, we were at SickKids with Caelum, getting his digestive system working and having a number of tests done to make sure there were no other abnormalities. There weren’t, praise be to God, and he is so great now! But for his first year of life we continued with unpleasant treatments at home for him and regular visits to SickKids for treatments and check-ups. So there we were, end of 2015, with a beautiful new baby who had a very uncomfortable birth defect, just tryna figure out life with two (our new normal) and then we notice one day, within just a few months, Tristan is limping…
The lost year. 2016. It was a rough year for a lot of people, I think. So many people lost loved ones, experienced medical issues, went through hard times… I try not to dwell on it but rather figure out how I can get my act together enough to still live out the plans God has for me and my family. Discipline and gratitude. Truly two of the most difficult characteristics to master in oneself.
You know, I don’t know if I can or should be grateful for what Tristan is going through. Riddle me this. I try to put myself in his shoes and think how I would feel or what I would want if I was him… how will he perceive what I choose for him now when he is an adult? That’s how I’ve been learning to navigate the decisions I make on his behalf. I do believe all things happen for a reason, and that there must be good which will come from this, and for that I am grateful. I’m also grateful that our young family of four has grown closer and stronger; although, I’m not sure if it’s in the face of all these difficulties or because of them… Jeff says he thinks a little of both. I’m grateful too that I live a country where the $300,000 annual cost of Tristan’s treatment is covered by Canadian Blood Services! Thank God for that! Furthermore, I’m grateful I live in a country where Tristan has access to this life-saving treatment, because in countries where it’s not available, little boys with this condition don’t usually live past their teen years. I’m grateful too that I live uptown from one of the best children’s hospitals in the world where Tristan is cared for by staff I believe are genuinely trying to do what they think is best for him. It’s difficult for me to let my babies be in the hands of doctors and nurses when I’ve spent most of my life gravitating more toward simple solutions for health, natural remedies, and was about to explore naturopathic medicine for our family, before my life became a blur of boys with treatments and medical appointments. There is no natural remedy for hemophilia. Only supernatural. We’ve prayed a lot for Tristan’s healing. It’s a tough balance to strike – trying to accept and navigate the reality of what you’re dealing with, while still maintaining a focus on faith that miracles ARE possible. They are. If you believe in miracles, please pray for Tristan. God’s will be done.
Speaking of miracles… (and segueing because I need an easy out after a long blog post) I found it to be miraculous that our family managed to get so many amazing pictures on our walk a few weeks ago in the Arboretum at Humber College in Toronto. It’s been nice to have more freedom to do fun things like this recently. We finally feel like we’re getting a grip on our lives again! Lives that will never be the same. 2017 is seeming like a year of blessing. I believe there’s a lot of opportunity to grab ahold of this year. All of us just need to respond rightly to it. Gratitude and discipline, I think.
Thanks for reading. Please feel free to contact me with questions or comments about Tristan or our family’s experiences living with hemophilia.
Ashlie
