It’s been just over one week since Hillary rang the Celebration Bell to commemorate her recovery from Idiopathic Aplastic Anemia. She said it was the best day of her life. Again.
Thank you so much for supporting Hillary on this journey. This event came about so very quickly and there are a great many more people we have not yet had the opportunity to thank — but we wanted to keep the focus on Hillary and CHEO. The dedication ceremony went perfectly. Hillary felt so comfortable and at ease in our backyard. She deserved that.
We ran inside teary-eyed right afterwards for a radio interview on CityNews with Sam Laprade, followed by a CTV News check-in with our favourite Patricia Boal. Both were moving experiences for us as a family, with such gracious professionals who know us so well. Since then, three families have reached out to inquire about ringing the bell, and two strangers have joined the Canadian stem cell registry. More awareness.
Also since then, Hillary had a wonderful 9th birthday, finished Grade 3, lost that worrisome silver-crowned molar that has kept us up for months, and chopped off all of her hair to try and help with her headaches. She jams out on her keyboard at night, exercises on her bike in the morning, and plays every single day with her friends — always pushing a midnight agenda. She loves Stranger Things on Netflix and fairy gardens and the easiest way to her heart is through a puppet show. She loves CardiB, 80s rock, and cheerleading movies. She has a lot of dislikes too. She is incredibly socially aware. She leads. She lights up every chat room she enters.
She is the happiest she has ever been. She feels reinvented.
She still dedicates a great deal of time to her recovery, and only has three minor infections right now. We have deferred her already deferred bone marrow biopsy surgery, aspiration, and long-awaited PNH clone test which was scheduled this July. We don’t know if we have made the right choice. If hematopoietic transplants from an unknown, unspecified donor during a global pandemic were more accessible, we would likely have a different stance. We talk in circles trying to decide, but we always talk it all the way through — all four of us.
We are but one accident, one visitor, one appointment away from a complete life shift, that I’m not sure we can all survive.
Until then, if you’re wondering what we’re up to as we continue shielding for Hillary, as we continue on this roller coaster that is Aplastic Anemia…
…we are holding onto her for dear life.
The next time I write, it will be with news about Hillary.