Julia Miller

Julia was a feisty and fun girl, with the best infectious laugh who loved her family, friends, and to ride horses and play hockey. She brought an intensity to her interests and played competitive hockey with the Kanata Rangers and show jumping with her
horse. It was hard to imagine anything could slow her down or get in her way, but by the age of 12 she was starting to feel the symptoms of her leukemia. Body aches and severe fatigue were the beginnings of a shocking AML Leukemia diagnosis and marked the start of a 4.5 year battle.

In March 2018 Julia was admitted to CHEO for a 6 month inpatient intensive treatment protocol and our world became one of blood counts, chemo treatments, machines, tests and procedures. The chemo was very taxing on her physically and mentally. She had some very bad days but her amazing personality still peeked through and she was a staff favorite.

Julia responded great to the treatment and reached full remission. She was discharged and continued to build up strength and slowly made her return to hockey. She was about 6.5 months into getting her life back when she started to have new symptoms, headaches had begun and some balance issues were starting.  Over the next few weeks they continued to increase. The headaches became debilitating, and then a new blindside. She had relapsed with an AML brain tumour. She had to be airlifted to Toronto’s SickKids Hospital for brain surgery. She was incredibly brave and did her best to take everything in stride. 

The surgery went perfectly and within the week she was back home and preparing for the followup radiation sessions at The Ottawa Hospital (TOH). Then 2 weeks later we were told that she relapsed again in her bone marrow.  This relapse would require a bone marrow (stem cell)  transplant and stronger chemos that would wipe out her entire immune system. She spent most of May and June 2019 in CHEO before being transferred back to SickKids for pre transplant care and treatment.  She would spend the next 3 months there. It was the hardest protocol yet and the complications were many. Julia was always very involved in her treatment and spoke with maturity beyond her years when she spoke to her Doctors and medical staff. She wanted to be involved in the discussions and have input.

Julia was a great debater who knew how to get her point across and back it up. She had  always wanted to be a lawyer when she grew up and would always say “you can't win an argument over me”. Her Doctor at SickKids soon saw the lawyer side of Julia when they had the great debate regarding her staying in hospital for an extended time following her bone marrow transplant. She understood and acknowledged the reasons the doctors gave for her staying put, but came back with her arguments why she should be able to go to the Ronald McDonald House to sleep at night which was a block away. And her arguments had substance… “Afterall Doctor, I am done, my mental health is suffering and if it is suffering, I won’t be able to get better.” I believe that she was one of the earliest overnights permitted at RMH. Taking the win, 3 weeks later she was able to convince them against their initial plan, that she should be able to go home to Ottawa for her Sep 8th 14th birthday. Another win! It was hard to argue with Julia to say the least.

Julia was really missing her pets and her own bed and found that even though she was recovering well at this point from the transplant that she was really struggling mentally and wanted to go home.  She drafted a 10 Reasons Why list outlining how a shared care treatment plan between SickKids and CHEO could work and how she would benefit from it.  It was definitely a first for her Doctor to see a patient advocate so well for their health and wellbeing.

Eventually she had everyone on board between her Team at SickKids  and her Team at CHEO and her shared treatment plan began with biweekly trips back to SickKids and CHEO filling in the rest.  Her Doctor at SickKids was so impressed with her that he asked to keep her list and uses it when he presents to groups on patient advocacy, The Julia’s 10 Reasons Why!

As a result of the transplant Julia developed Graft-versus-host disease (GVHD) and by early Jan 2020 it became severe enough that she would have to begin a treatment called Extracorporeal Photopheresis (ECP) twice a week which is similar to dialysis. Unfortunately CHEO doesn’t offer the treatment and it was looking like she would have to go back and stay in Toronto long term again, but Julia knew that adults get GVHD too so she asked about having the ECP done through the adult outpatient clinic at TOH.  The Primary Oncologist agreed to meet with her and her reasoning went something like this, “Yeah, I’m a kid but I’m not a running around little kid. I look like an adult, and in fact, act better than some.” I mean she really left little room for doubt. 

Again Julia won them over and was able to start the ECP treatment at TOH. A month into treatment her blood counts were starting to look off again and by April she was in a complete relapse again. Always trying to see the brighter side she said “well at least the cancer killed off the GVHD and all that pain is gone and I don't have to do ECP anymore”.

The thing with Julia’s AML is that it had alway responded well to the chemo and then always found a new way to come back harder. She got back into remission again, but that was the beginning of a series of relapses in 2021. Her AML would come back in her bone marrow, in her CSF and in her brain. She beat it 3 more times until it returned for the final time in Aug 2022.

I will never know a stronger, funnier, more compassionate person. Even in palliative care she made sure to tell us “life is short, grab it by the reins and take it and live it, but don't do stupid stuff, that’s wasting it.  Be a happier you, go see the waters, touch the ocean, figure out what you want to do and do it”.

Julia definitely had the pen in her hand often when it came to writing her story. Some chapters were unquestionably better than others and some were devastating, but no one chapter defined Julia… you have to read the whole story – from the time she joined the Miller family, learned to walk, said her first words, to when she began school and learned to skate, ride a horse and negotiate her treatments, her motto - “You may see me struggle, but you”ll never see me quit”.

Sunrise September 8, 2005

Sunset August 19, 2022