Yesterday was Alyssa’s 9th birthday and another bittersweet day for the family. After a morning visit with CHEO, we were told Hillary is back in the “severe” range for aplastic anemia, particularly due to her low neutrophil levels. This puts us on the fast track to treatment. The risk of a deadly infection from germs, bacteria, and fungi are far too great to chance it. No more watching and waiting. It’s time to act.
This comes after a very eventful long holiday weekend, including an ambulance ride for a bonked and bloody nose. Thank you 911 Emergency Services, Ottawa Police Services, and Ottawa Paramedics Sam and Sebastien for your fast response, your calm competence, and your compassion for three, very scared girls. Alyssa’s coolness under pressure will never be forgotten. Hillary still thinks that she experienced “true magic” when she floated out of the back of the ambulance as the legs of the stretcher unfolded out of her field of vision. After some blood tests and a CT scan to check for a cranial haemorrhage, we were cleared to go home.
Our donation experience was moving.
On holiday Monday, we gave back in the best way possible by donating blood at the main office of Canadian Blood Services — Mommy’s 12th and Daddy’s first time ever. We saw several men donating platelets, which are interestingly yellow in colour. We watched as they sat for an hour and a half to filter the platelets from their plasma — a painless experience done as often as every two weeks. Women who have had children cannot donate platelets, and so these men…well, they are also life-givers, aren’t they. One of the men was making his 500th donation. Another, serendipitously, happened to be volunteer Stephane Goyer, who helped run our first bone marrow drive. And our phlebotomist, Christine, shared a story of love and loss with us. Hillary will need platelets this week. She warmly thanked several donors in person. It was a truly moving experience to say the least — not to mention, easy and fulfilling.
This is what the fast track includes.
Everything has been expedited. We’re off to Toronto on Sunday to visit with SickKids. When we get back, we head right into dental surgery, and will likely be admitted the following Monday to begin treatment, depending on how well she does.
If Hillary had access to a matched sibling donor, we would be going directly to a bone marrow transplant. Since we don’t, immunosuppressive therapy is considered the safer, less invasive, first-line treatment. The treatment begins with intensive administration of hATG medication for eight days in hospital followed by three months of daily cyclosporine medication at home, in strict isolation. It will not be easy. There are complications and visible side-effects. If it works, we continue for a year, maybe longer. It offers a 75% chance for remission. You can try the therapy first then go to transplant, but you can’t try it the other way around. We have hope that it will work.
The gift of life must be under that Christmas tree.
If it doesn’t work after three months (around Christmas-time) then we will go to transplant. We are hopeful there will be a 10/10 unrelated donor match waiting for her in the global registry. But hope alone is just not enough for me as a mother. Not when there is something I can actually do about it. I am in contact with too many people who were told there was a match, only to have it fall through. I cannot take that chance. I will not. I would want someone to fight for me. All it takes is to raise awareness. That’s it. The rest is up to you.
Even if Hillary doesn’t need a transplant now, she may need it in a year, in five years, in ten years. And what about the other 800 people in Canada waiting for a match? The other 18,000 around the world? More than half of the people waiting will not find one. Like this 9-year-old who is desperately searching for a stem cell match for aplastic anemia, just like Hills. It takes 10 minutes to #GetSwabbed to see if you can save a life. There are several upcoming opportunities in Ottawa to join the stem cell registry. Stay tuned for more information, and look for Hillary in Maclean’s magazine in September. She’s being featured as part of a national campaign by MediaPlanet for her efforts in raising awareness on this critical issue.
Unbelievably, the hardest is yet to come.
We’re told it’s a marathon, not a race. And while it’s being done in isolation, it’s not being done alone. Thank you to my parents for being there for every single appointment and procedure since day one, no matter how difficult or inconvenient it may be. Thank you to Anna for providing the only respite us three girls had this summer while Steve was at school. Driving to the east end of the city and swimming in your ozone pool every day with no one around was pretty much the best gift Hillary could have been given, especially because it came with your complete understanding. Thank you to the OCSB for letting me feel useful at work, for the very little I can do right now. You truly walk the walk when it comes to how to #BeWell, #BeCommunity, and #BeInnovative in the workplace. Thank you everyone who came out to celebrate Alyssa’s birthday on such short notice. She really deserved a stress-free day. She said it was “the best birthday ever” so that’s a win.
Thank you Nicole for rushing stuffed animals to the emergency room in the middle of the night. Thank you Stephanie for mobilizing an entire army of lacrosse players to spread awareness. Thank you Uncle Billy for installing a hot water tap outside for Hills to swim safely. Thank you Nadine for understanding. Thank you Dani and Kristi for rescuing me over and over. Thank you Mme. Brownlee for being Alyssa’s favourite birthday guest. And, if any of you fellow golfers out there really want to help us thank the Bruce Denniston Bone Marrow Society for saying yes to every bone marrow drive, please register for their upcoming September 20 golf tournament, their only fundraiser of the year. Click here: http://www.dennistonsocietyottawa.org/rcmp-denniston-bone-marrow-golf-classic-2019/
And Hillary. How is Hillary doing?
She is absolutely amazing. She is happy and has no problem making good choices, which is why she is doing so remarkably well. She’s very smart. She craves power-walking along the canal and loves playing her piano. She is not in pain and does not feel cheated. She’s fighting. She sees the big picture. And she never, ever stops singing.
This is the scariest place we’ve ever been. Please continue to send your light and love in Hillary’s direction.
“The little reed, bending to the force of the wind, stood up again when the storm had passed.”