Great Start to 2024

A lot has happened since our last post, but thankfully not much in the context of Ellie’s treatment and recovery. She continues to progress well, despite a few small hiccups along the way.
 
Year 6 has been an exciting start to the year and Ellie is enjoying the face-to-face academics and introduction to new activities. She participated in her first school camp recently which was an overnight adventure camp where she did rock-climbing, abseiling, zip-lining, and other fun activities. She was proud of herself for participating in every activity when some other kids didn’t because they were scared. She absolutely loved it and couldn’t stop talking about it. She was so excited leading up to camp however, the day prior she spiked a temp while at school, had dizzy spells, almost fainted, and had to come home early. We were concerned she wouldn’t be able to attend camp but she would NOT take no for an answer, so we allowed her to attend (her school was very supportive/understanding) and she had an absolute blast.
 
Her temperature and dizzy spells are an ongoing thing which we just put down to ‘unknown weirdness’ associated with bone marrow transplant and having enough chemo to fill a bathtub, but this time was likely related to the ongoing cold/flu symptoms she’s been experiencing for several months. She was confirmed to have Rhinovirus twice, and just recently, RSV. It’s been very hard for her to shake the illness as her immune system is still very immature. However, she is largely able to manage it with Panadol when needed, but she has constant mild to moderate cold/flu symptoms.
 
During a particularly bad few days of symptoms where she couldn’t recover from being highly febrile and having shortness of breath, we were advised to take her to the ER where than ran several tests and scans. It seems she regularly has some small crackling in her lungs which may be fluid, may be infection, may be something else, but not enough to do treat properly. However, this time they were concerned as her CRP (inflammation markers) were hugely elevated (>200) which is a strong indicator for sepsis. Ellie otherwise wasn’t presenting with sepsis symptoms so it was determined the combination of a viral and possibly minor bacterial infection, and her immature immune system was causing an inflammatory response. After some antibiotics, she was released with no other significant complications.
 
While her symptoms have been ongoing for several months, she doesn’t let it phase her too much and just gets on with things. She doesn’t let it slow her down much. On the other hand, I recently had man-flu and wanted someone to take me to hospital but nobody would listen to me at all!
 
Ellie was also recently confirmed to have chemotherapy induced alopecia. We had suspected this for a while as her hair doesn’t seem to be filling-in. What little hair she does have is growing slowly, but not filling-in. We’ve discussed wigs but she isn’t interested. Not sure how this will play out over the years but she is the type of person who probably won’t let it affect her too much. She is aware but not overly sensitive about it and sometime even makes jokes. We wonder how she will go during her high school year and beyond but for now, she is not too phased which is a characteristic about her we love.
 
Other exciting events for Ellie have included our American family coming to stay over Christmas, our good friends from Brisbane staying with us over the Easter long weekend, Ellie’s first sleepover birthday party at a friend’s house with lots of other kids, finishing her childhood immunisations (for the third time), and a family weekend trip down on the South Coast with Camp Quality which included her first body boarding experience at the beach.
 
Ellie continues to have great energy levels but her physical abilities are clearly limited. We are trying to get her into daily cycling on the exercise bike and weekly physiotherapy treatment due to some ongoing lower limb and back/neck issues. Despite some of these relatively minor ongoing challenges, we are so happy to have her with us, relatively healthy, and enjoying life and school. We regularly comment how incredible it is to have our family together under one roof, almost like a normal, happy, healthy family. There is so much to look forward to over the next couple of years with both girls in high school, a move to Brisbane, building our forever family home, and many more years of health ahead of us. 
 
 
PC