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 are eternally grateful to St. Justine’s and SickKids children’s hospitals for their expertise, and are fiercely proud to be in the hands of the experts at CHEO.
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.
Good luck Hillary for the next 8-10 days of hATG therapy. Praying every day for you. I know you can do this! You are a survivor. 💕
Sincere and continuing prayers for your entire family.
You have already gone through so much and will continue until Hillary is well!
Stay strong and know that we are thinking of you always.
Thank you for the update. I know the days ahead seem impossible, but I know that you can do it. You will get all my prayers and love EACH day and it will work. In no way is it the same, but when I had to do chemo it felt like a death knell and with all my spirit and soul DID NOT WANT to go down that path…and somehow, in the places that seem so impossible, God goes along with you and you find a way to do it. I kept reminding myself, that this is just a bad time, not a bad life. I think Naomi showing up was a God Wink; God giving you a real life example that Hillary can do this. You can do it, Mom. You will both make it and then your work will continue. Look at how much good Hillary has done already? It’s life changing. I am forwarding your blog post on to our prayer group. We stand with you in faith against every side effect, each day! “For I know the plans I have for you says the Lord…for good, for hope and a future” Jeremiah 29:11. You are loved!!! Tanya O’Brien (OCDSB)
The why of things is always the most difficult to deal with. After my stroke i read a book called “the seat of the soul” by Gary Zukaf and began to understand that everything does happen for a reason It may be a lesson or a test. and we must look at all circumstances in our life to find the the lesson, the universe is teaching us. Each circumstance may be a lesson for us or those around us . As with all lesson and tests: it is often painful but God or the universe if that is a more comfortable concept never causes us pain the pain for no reason is always to strengthen or teach . Hilary is already a blessing and a miracle . Now all of us must try to be ta blessing to others . I pray that your family will find the lessons and get peace from them
Kel, this article. The strength you are finding, the resources, the support is abundant.
Sending so much love babe. Please reach out if you need anything at all….even just a coffee to give you a small break. Not sure if I can just roll up with one?
Love you. You are literally the best Mom a child can ask for.
Kelly
This was a very nice read. Me and my son are here at Sick Kids with Severe Aplastic Anemia. We’ve been in and out since June 17th. We have started our immune suppressant therapy, cyclosporine and many other medications along the way. As well as many, many platelet and hemoglobin transfusions. We have not been so lucky with our immune system though as we’ve ended up admitted quite a few times with fevers and infections. Brodie is such a strong 8 year old boy, he has a go with the flow nature about him and he takes on anything that comes his way. He never complains or puts up a fight, takes needles like a champ, and learned to swallow his pills very quickly. We will continue to fight together and beat Aplastic Anemia! Thank you for everything you are doing to spread awareness and challenge more people to become bone marrow donors! Keep on winning Hillary!! ❤️
I wish you all the best Hillary and to mom and dad, remember to take care of you too. We have two children and each of them have chronic medical conditions. We know times can get tough. Take care and good response and recovery from treatment
Praying for your sweet girl and all your family. xo