The fast track to treatment has been fast indeed, and tomorrow, Monday at 7:00 am, Hillary will be admitted to CHEO for the start of her immunosuppressive therapy treatment.
It will be an intense 8-10 days in isolation (with only mommy and a nurse) to bring down her immune system with hATG — to essentially stop her T-cells from attacking themselves. The more challenging part will be when we are sent home to administer the cyclopsprine medication ourselves for three months, without the CHEO army at our bedside.
Our doctor tells us this will be her most vulnerable time yet. She will have low neutrophils for the first month, which means she will have no chance of fighting off infection. Her lungs will be highly vulnerable. She will grow hair. A lot of it. She can’t be in the sun. She will gain weight. She will need frequent blood transfusions. She will not attend school for at least six months, and visitors will need to be carefully screened.
Our doctor told us this is also the most difficult part for families and relationships — not everyone understands the explicit nature of isolation. But this can work. It has to.
Acquired (not inherited) and idiopathic (meaning unknown).
Last week’s visit with SickKids Hospital in Toronto lent more insight into Hillary’s disease being auto-immune rather than genetic. Since all tests have come back negative for any underlying genetic cause (or stem cell defect), and since Hillary also developed an extremely rare PNH clone, her aplastic anemia is likely acquired.
Still idiopathic, meaning we will never know why, but acquired in that a virus or event likely happened along the way that made her body put up some defences and began attacking itself instead of the invader. This means this treatment path might work and bring with it life-long remission. We have hope.
While in Toronto, we met up with an aplastic anemia survivor. Naomi, we could not believe you were real. Naomi reached out to us very early in Hillary’s diagnosis by text. She is a 25 year old transplant recipient now in recovery. We have bonded for life. She gave us so much hope. We also met with a friend from high school.
Thank you, Colleen, for meeting us for cookies and a hug. Isolation can be pretty lonely. You made the world of difference with your friendship and laughter.
Meeting with Colleen made me realize….twenty years can’t interrupt the sense of community and belonging that the OCSB’s St. Matthew Catholic High School has afforded.
Like Natalie. Nat showed up at the last drive event, then went a step further and organized another bone marrow drive at our former high school in Hillary’s name. Join us on Thursday, August 29 from 3-6 pm at St. Matt’s in Orleans where the Bruce Denniston Bone Marrow Society and Canadian Blood Services will have 500 kits on hand. It takes 10 minutes to join the global registry.
#StartWithHillary and do it for Jeremy, who’s having a hard time finding a stem cell match since he is half-Chinese. Read more about #Match4Jeremy here, and please help give his family a chance at keeping their Daddy. More donor drive events have been confirmed for Caribbean Culture Days on September 28 and Ottawa University on October 3. A great deal of sharing is going on within Twitter, and Hillary will keep tweeting her savage tweets @StartWithHills to increase awareness on this critical issue. And if you have any doubts, read more here: Elmoazzen: Stem cell and cord blood donations can save countless lives (August 2, 2019).
Back to Ottawa and a sobering reality.
After our visit to Toronto, we rushed Hillary back home for two life-saving transfusions — hemoglobin and platelets. Then, the following day, dental surgery to pull two molars — a common procedure in order to prevent any possibility of infection. Then, some awful-tasting medicine and recovery.
Summer has always been a joyous time for us, filled with camping, boat-rides, food, and family. The days have been tougher this year. But, one thing about Hillary — she’s a winner.
She is to be highly credited for her current state of health — it’s quite rare to have remained infection free up until this point. Her precocious nature is a gift that has helped her make mature decisions about her health. She does not mind wearing a mask, and is now practicing swallowing mini Sweet Tarts in preparation for taking pills.
We work at getting through each day, and that’s it. Tomorrow is not promised — but it is planned. Please dream thoughts of wellness for Hillary as she works so very hard this coming week to beat this rare blood disorder, and come out the other side, singing.