On Monday, February 2, we had a party at BC Children’s hospital to mark two years of Trey being on Enzyme Replacement Therapy. For the boys it meant cupcakes, lots of family and friends, balloons and a few presents. For Ryan and I it meant so much more. The marking of this anniversary is always full of mixed emotions for me, for less than two weeks later, we mark another anniversary. That of Trey’s diagnosis.
In this month we watched as our hopes and dreams for our beautiful little guy were crushed with the news that our less than two year old child likely had a progressive and rare disease that might only keep him with us for just over a decade. Although the specific memories have faded, the feelings of that day and those first weeks and monthes have not. And then one year later, in this same month, we watched as the enzyme that Trey’s body cannot produce enough of, dripped into his body, in the form of Enzyme Replacement Therapy at BC Children’s Hospital.
With regards to MPS, and since Trey’s diagnosis, two days stand out in my mind as markers of hope and the belief that Trey will live a long, healthy and fulfilled life: meeting Simon Ibell and Trey’s first Elaprase infusion. It is a very strange feeling. Two anniversaries, so close together, which bring forth feelings in me of complete opposition.
Yesterday Ryan and I were speaking with someone who asked us about Trey and the enzyme replacement therapy he receives. He asked: “So what does this treatment mean for Trey?” I don’t think he was aware of how loaded this question is. Depending on the day and moment, this question is quite likely to bring forth tears. Tears of fear, tears of uncertainty, tears of hope. On this particular day, though, both Ryan and I were both able to quickly stuff our emotions in a box and answer the question as if it did not strike us at the deepest level of our beings. And then, once we were able to compose ourselves, we had to ask: who’s perspective is he asking for? Mine? Ryan’s? Trey’s geneticist? Or his biochemical disease doctor? Because there are no definite answers to this question, the answer will change depending on whose perspective is given.
One doctor we know would probably give us an answer that would make Ryan and I nauseous, angry and devastated. Another would give us an uncertain answer, but with hope attached.
Ryan and I would also give slightly different answers. I waited to see if Ryan wanted to answer, but he did not jump in to respond and because I am more often able to answer this question without tears, I thought I would spare both Ry and I. Him the embarrassment and me the pain of watching my partner suffer.
What does ERT mean for Trey from my perspective? For what it’s doing in him right now, I am completely confident. It is allowing him to grow and be with and be like his peers. Besides his hearing loss, which has the result of making his language a little more difficult to understand, he does not appear or act any different than his peers. I know his difference is progressive, but I do believe ERT is slowing down or stopping much of the progression, and given what I watch in Trey day to day, he gives me an incredible amount of hope, and I believe he is going to be able to live a full and wonderful youth. I will admit I don’t look really far into the future for Trey, but that is not because he has MPS. I don’t do it with Sadie or Avery either. I just have a hard time envisioning my little munchkins as drivers or workers or parents.
What I do know is this: when conversations come up with Trey and Avery about being dads or what they dream about and what they want to do with their lives, in my initial reaction/response, I do not think or respond any differently with Trey than Avery (or Sadie, although she doesn’t enter these conversations much!). After my initial thought and response, I do often get a little voice in the back of my mind, reminding me of our situation, but I push it out as quickly as I can. What this tells me is that in my heart I do believe that Trey will grow up strong and live a full and great life. I believe in Trey with all my heart. ERT helped to bring these hopes and dreams back- the ones that were crushed with our initial diagnosis.
However, although I believe in Trey and think he will do amazing things in his life, he still does have a progressive disease for which we have numerous check ups and hospital appointments. Most of the time this is not a big deal and has become a normal part of our lives, but for those times when the news is not great or when Trey is upset because of what is being done to him, I am so grateful for all the support we have. So on this dual anniversary, I want to thank all of you who support us, in all the ways you do. Whether it’s in donations, in hugs and love and thoughts even though you don’t/can’t understand what it is we’re going through, in the form of knowledge, support, and funding from doctors, nurses, administrators, and government workers, or from families who know what it is like growing up and living with this, thank you. Your support keeps me going and makes the fight continue to be worth fighting for.
