We are happy to report that Hillary’s out-patient visit last week was short and uneventful since she did not require any transfusions! This is a big deal. Her hemoglobin rose from 80 to 89 on it’s own, keeping Hills above that critically low 70 threshold. Her platelets saw a small rise from 49 to 55, and her neutrophils remain low, moving from .5 to .6. Overall, this is a favourable response at Week 12.
During her visit, Hillary received her flu shot as recommended by CHEO and had no adverse reactions. We were not a flu shot family prior to this diagnosis. Everyone close to Hillary is now getting it to keep her as safe as possible.
Hillary is doing exceptionally well in all areas.
She says she thinks her immune system is finally coming back from its long vacation. We celebrated the three-month mark with our favourite home-cooked dinners (yes, four of them) and a cautious trip to the quiet Ottawa Art Gallery, which she had never visited. It was really good to get out, despite the risk.
Our discussion with the specialists at CHEO was delayed by two weeks, so we just keep hoping her numbers continue to climb while we work to ensure she remains infection-free. We are still waiting to see if her mysterious PNH clone has increased in size, and if her ferritin level is decreasing. Every day, we are presented with a strange new set of symptoms, but they are all minor compared to the struggles others are facing.
I’ve spent a considerable amount of time looking back…however useless it may be….going through every photo since her birth and charting/analyzing her health timeline. Since her condition remains idiopathic (or for unknown reason) there is always that lingering question: Is it genetic or auto-immune?
I think it all started on Day 5 of life -— a day I remember vividly. Or maybe it was 2016 when she caught that virus. Were her teeth problems caused by the anemia or did the anemia cause the teeth problem? When you map it out, it’s all so interesting and interconnected. Some of it is truly unbelievable…as in, I’m having a really hard time grasping reality.
I will share more, when I can, and will be sure to update you all before Christmas. We’re not sure what Christmas looks like for us yet, but we know that we just need to stick together and stay positive.
We are extremely grateful to have Hillary home and feeling well.
And so, we wait.
Life remains on hold.
Check out our sweet Hills in March 2017 at the young age of 3. She’s always loved YouTube.
There are so many positives in your post. Hope is truly a gift we give ourselves. It fuels our attitude and raises our commitment to believing in miracles. I hope the Christmas season fills you with renewed hope, peace and joy. Your family has been through a crisis but still, the four of you hold on to one another and smile. May God Bless you and keep your family safe.
So great to see another step forward despite the many steps backward along the journey. Prayers continue for a full recovery!
Hope my feelings and prayers are reaching you through Lauren….❤️
This is a wonderful report! Miracles sometimes come the slow way around so that we can fully grasp them. Hang on tight and know that God’s army is praying for your family, believing that all will be well.
Stay strong! Tanya O’Brien
I’m glad to hear of all the positive gains Hillary has made. I’m praying that she continues her uphill climb to a healthy recovery. I hope the holiday season brings your family peace, love, hope and joy.
Wonderful news. Take it one day at a time and celebrate the positives. I am sure that things will continue to get better. We are all praying for Hillary.
So glad to hear some positive news! Celebrate those little victories and know we are all thinking of you!
My step will be much lighter today. Thanks Kelly, so glad to hear of the improvements. Light and love to the whole family .
Thank you for the good news. I will keep praying for Hillary and your whole family and from the words in my favourite book “the seat of the Soul” I pray that we all learn the lesson and pass the test that Hillary is here to teach us . Another saying from one of my favourite movies is “everything will turn out all right in the end, if it is not all right it is not the end!”
So happy to hear your good news Kelly. This time of year brings hope and miracles. My Christmas wish this year is a miracle for Hillary. Stay strong and know the power of prayer is working.
So glad to read that Hillary’s levels are going up! Will keep sending prayers your way. Stay positive and focus on the little victories.