Two weeks ago, Hillary proudly walked out of the hospital and into her cozy home. The first thing she did was march straight up to her room to play her keyboard.
The first week back was challenging. Her sister Alyssa caught a small cold and had to stay home from school…and then Hills got sick. But, her doctors are encouraged that her body was able to fight off the minor cold on its own.
Hillary is now six weeks into her immunosuppressive therapy treatment. She received another hemoglobin transfusion last week, and her platelets have remained “stable enough to sustain life” without a transfusion. She was also given pentamidine, a medication given by inhalation which she will receive monthly to prevent bacterial pneumonia.
Her doctors gave us just a couple of other rules to follow.
No school. No large gatherings or crowds. No animals. No gardening. No mold. No sun. No contact sports. No rough play. No swimming. No physical exertion. No construction sites. No travel.
Don’t be around anyone who is sick (or has been sick recently), and if you must have people in the house, limit it to one or two at a time. Don’t go near daycares or hang around other kids. Enforce herd immunity and have everyone around her get the flu shot.
Be extremely careful with food preparation. Have her wear a mask when you go out. Put a bottle of hand sanitizer in every room, and use it often. Dust often, and keep everything very clean. First sign of fever, head directly to the emergency room.
She knows every single rule, and advocates for herself. She does not feel sorry for herself. She is a fighter. She is amazing.
Her doctors also told us to get plenty of fresh air, eat well, and be joyful. And, so that’s what we’re doing. We go for daily walks with our hats and umbrellas. We cook farm to table every day. We adoringly put Alyssa on and off the bus and make her feel special. We sing, dance, craft…snuggle. We are very busy decorating for Halloween. This year, we are going all out with a scary, not a cute Halloween. I think it’s safe to say we’re all pretty fearless now.
It will be 12 weeks on November 12. This is when we want to see her numbers go up — her hemoglobin, platelets, and neutrophils. These are the three blood components that are suppressed by the aplastic anemia. To give you an idea of where we are at, in simplified measurement terms:
- A normal range for hemoglobin (red cells/oxygen) is 120-150. Hills presented at 48, and sits between 70-100 now with regular transfusions. Her heart beats fast.
- A normal range for platelets to clot her blood is 250 to 450. Hills currently has 10. She can not bump her head.
- A normal range for neutrophils (white cells) to fight off infection is 4.3. Hills is around .2. She can’t get sick.
She basically has no immunity of her own. Interestingly, she will have to get all of her childhood immunizations over again. The current measles epidemic has me a little shaken.
Sorry that when you see her, she looks perfectly fine and approachable. She is not. Let me protect her.
Sorry to St. Leonard Catholic School that we could not come inside the school to see the 1,000 paper cranes that were made to pray for Hillary. Thank you Mme. Roy and Ms. Lalonde for organizing such a beautiful gesture of community. We were moved beyond words.
Sorry to all those coming out to join the stem cell registry in Hillary’s honour… that I can’t be there to meet you. That’s been hard. Thanks to Nicole Brooking for going and shaking hands on my behalf.
Sorry to all those who want to help, but feel helpless. I can’t have you over. I don’t know what to ask you for. All I can do is follow the rules to protect my kids. I can’t focus on anything else.
Sorry, sweet Alyssa. Sorry I had to cut your bangs in the CHEO bathroom the night before school. Sorry you have to bite your tongue when things are unfair. Sorry you’re scared. You’ve been the best big sister, and daughter, we could have ever hoped for.
I’m not strong enough to put it in writing.
Let’s beat this thing and then jump in a muddy puddle together.