Progressing Very Well
It’s been quite a while since our last update as not much is happened over the past few months. This is great news as it means Ellie is tracking steadily and continually improving.
Now that Ellie doesn’t have a central line, we have reverted to monthly appointments for a clinical checkup and bloods. Prior to Ellie’s central line being removed, she was having occasional fevers and there was a thought her line may be infected. Since removing the line a few months ago, she hasn’t had any fevers and is feeling great. Of course, one of the first things we did after removing her line was go to the rock pool and beach for a swim!
Ellie is doing great being back in school full time. We were quite surprised with this and thought that it may take her a few weeks to ease back into it by doing half days. However after the first few days it became obvious that she had plenty of energy left and was eager to be back in class and not miss anything. She’s loving being amongst her friends and getting involved in all schooling activities.
Ellie’s physical abilities are still slowly improving. She still has obvious muscle atrophy in her legs and she tires quickly when doing anything strenuous. However she does get on her bike and rides 10 laps of the neighborhood weekly as per of her routine. She is otherwise fairly active, participating in nearly everything at school – even standup paddle boarding classes at Malabar Beach as part of school PE!
We’re unsure if her hair is growing back yet - possibly a little but it’s very slow. We’ve spoken with the team and dermatologist about chemotherapy induced alopecia. Not sure if this is the case as they say even after BMT it is extremely rare however, her lack of hair has us wondering.
Next month we will have another PET scan to confirm no presence of PTLD or other issues but clinically, Ellie is presenting very well so there isn’t any reason to suggest anything is going on.
We also had a very special visitor recently – Ellie’s first (and favourite) oncologist, also named Ellie (commonly referred to as Ellie # 2). Ellie # 2 has been on exchange with the Cincinnati Children’s Hospital Cancer and Blood Disease Institute (CBDI) for the past year, and she came back to Sydney for a short visit, making the time to catch up with us. It was so great to see her and for her to see how well Ellie is progressing. Ellie #2 has been with us since day 1 and has become like an extended family member. The Sydney Kid’s Cancer Centre has a habitual relationship with CBDI with several of our oncologists having completed exchange. CBDI is where our team learned CTL treatment which was pivotal in Ellie’s PTLD treatment, Sydney KCC being the only hospital in the country that has access to this treatment.
We’re overall very happy with Ellie’s progress and Ellie is very happy being back to doing most normal things. She’s looking forward to more beach days, summer in Sydney, and Christmas time with lots of upcoming family visits to Sydney.
PC[...]
