Thank you for the thoughts and prayers that have encircled Hillary over the last several days. I can physically feel your angst as you await an update on her status.
The first six days of Hillary’s immunosuppressive therapy were not without incident, but they were pretty manageable in terms of what could potentially happen with this treatment — some hives, sore ankles, and mood changes. We were able to make crafts and read while lying in bed for her six hour daily infusions. She was a little disappointed when she swallowed a loose tooth, but she and Molly Penny figured it out with research and letters to the tooth Fairy. She was happy. Her doctors were very pleased. She was rockin’ it, as evidenced by her tweets.
But on Day 6 (Sunday), late in the evening, Hillary experienced a severe reaction. It was like a light switch went off, and Hillary felt as though her brain was melting. The long and extremely violent event (exacerbated by the steroids) sparked a spot call (emergency) in the hospital to bring experts to her aid as they tried to alleviate her symptoms. We called family to her bedside. It was unspeakably terrifying.
Thanks to the fast-actions of nurse Judy (whose paisley scrubs and kind eyes are forever ingrained in my memory), Hillary received several doses of morphine, lorazepam, some blood pressure medication, and a life-saving platelet transfusion. Words cannot express the relief felt when you hear that blood is available in your child’s blood type from the blood bank, ready to use. It gets me every time.
Hillary continued to be sedated throughout the night to manage her pain, and had a second headache episode in the morning. We were hoping the incident was isolated, but it continued and increased in frequency through Day 7…Day 8…Day 9….tomorrow is Day 10.
An ultrasound revealed healthy kidneys, liver, and spleen, but blood levels revealed elevated levels of cyclosporine. Her medications have been adjusted, and we will stay at CHEO until she is stable enough to return home. Hillary has been on 12 different medications, some have to be administered with gloves due to their toxicity. Balancing the doses of these mediations is like….an artistic science. Too little, and the therapy won’t work. Too strong, and her organs can be damaged. But one thing is clear — if we don’t treat, Hillary can’t live.
And so we push on, for her, and her sweet sister Alyssa.
Once discharged, we will return to CHEO three times a week for blood work and frequent transfusions. Hillary will need both hemoglobin and platelet transfusions on Friday. She may develop serum sickness. She could develop an infection. Emotions are high. Fear is real. Communication is hard. But Hillary is amazing, and everyone who comes into contact with her agrees. I can’t even begin to describe how strong she is.
Hillary not singing right now, but she’s humming. And, she’s not the only child suffering in this hospital. I’m not the only mother sitting on an arm chair alone in the dark, afraid to sleep, eat, move.
Our story is not unique.
Please become a blood donor.
Please join the Canadian stem cell registry.
Please think bigger.
My heart is overwhelmed with love and so many other unexplained emotions as I read your post. We will continue to pray with all our might for that miracle donor or a spontaneous recovery. Xo
Keep staying positive and strong Hillary. You’ve got this. You have so many people thinking about you. Everyone is praying for your healthy return home so you can go and be the child all kids should be. I wish this didn’t happen to anyone but especially precious little ones like you. I’m looking forward to seeing your mom post pictures of you running through fields and getting muddy. xx
Kelly, i know this is the hardest thing you’ve probably ever been through. Hillary’s a fighter. Once she’s back to her old self I pray that you and your family never have to go through anything like this again.
You’re all in my thoughts and I’m sending all the hugs, good wishes and positive vibes your way. ❤️
Caroline
I am at a loss for words. But my conscious mind, heart and soul are full of prayers for the entire family.
I wish I could say something to make this journey for Hillary and your family a wee bit more bearable, but there are no words.
Please know you are all in my thoughts and prayers every day.
Sending you hugs.
❤️
I can’t even begin to imagine what you are going through. All I can say is I am praying for your sweet girl and for all of you, that the Lord would give you strength and sustain you. For complete healing for Hillary – He is the God of MIRACLES!!
You are so loved Hillary. This is a very hard time for all of you. Many people are praying for you all the time. You have to keep going. Asking Jesus to stay close! Agreeing in prayer for complete healing of Hillary.
Dear sweet Hillary, Alyssa and your parents… We are praying for you all- here in Winnipeg and sending ALL of our love and positive energy out your way!
I remember when your Mom and my daughter Sherri were young, carefree little girls- so full of joy and energy- such a pleasure to see! I am praying that you will soon be well enough to have the same joy and energy- what every little girl should enjoy!
Keep pushing on and being strong! You have an awesome family and group of friends who love you to the moon and back!
God IS a God of miracles! I pray that your miracle is on the way! Love to all of you forever!
Words cannot express the many emotions as I read this update. No child or family should have to go through this. My heart aches for each one of you. Please know I pray for Hillary’s recovery every single day. Hang onto Hope!
Dear Hillary, my heart hurts with you as I remember the treatment I went through for my blood cancer (AML). It sounds like you have received some of the same drugs given to me. I know, some truly awful ones, but I tried to remember they would help me despite the sickness they may bring. I made it through my 2-year battle by telling myself this too shall pass on the hard days and enjoying every single day on the good days. On the hard days, I often visualized the good days to come. I took it one day at a time, and I sought to make memories of the good things I experienced each day. I encourage you to make memories with your family and caretakers. Memories that will become a part of your story to help others later on. I am now an old man having lived 30+ years past my battle as a young man, and I know you can grow up to become a strong woman too. God bless you.
I’m at a loss for words for the pain that your beautiful little girl is suffering. Praying for Hillary’s recovery and for her quick return home. May god provide you the strength to continue being that warrior mother to both your girls. Stay strong and know you have a whole community rooting for your family. Will continue to think of you all through this journey.
Dear Hillary, Please know that people all over the world are praying for your recovery and general health! I am in San Francisco. Someday you must come visit the Golden Gate Bridge with your family. You must grow up and do exciting things. You are a brave little girl and very much loved. I also have a little girl and I love her more than anyone in the world. Think of all the wonderful things you will do once you are well. Sending you big hugs and blessings from another Mommy in the USA!
My heart breaks to hear this news but I know Hillary will be back to singing soon! She is such a brave little girl with a very courageous mom by her side. I look forward to seeing her bright smile soon! Sending all our love and prayers from here at Sick Kids! Brodie is in this fight with you and together you will create miracles! ❤️
I am forwarding this to everyone I can to ask for prayers and positive thoughts as I believe that they both work. We are all one connected by spirit and we feel each others pain and joy if we open our hearts to it: and if we all put out positive thoughts and prayers to God it will help and comfort if not fix. Love you Aunt Rosemary
Hillary,
You are a brave girl and you doing a fantastic job fighting your battle! People all over the world have learned of your story. We are praying for strength for the days that are extra challenging and for healing. You have so much to give. Continue to be brave. We are rooting for you!
I can’t imagine what you and your family are going through, but I know Hillary is in good hands. When I think of Hillary, I think of my own grand babies and pray that she will continue to be brave…and that she knows how many people are cheering for her on the sidelines…sending all my positive thoughts and prayers your way…