Day + 40: Home

We’re excited to say that Ellie was released home earlier this week and is enjoying being back in her own environment with her puppy and her sister. It has been great having the whole family back under one roof again and not needing to share time between the hospital and home.
 
It has been another challenging transition and we’ve had some friction along the way. There was some miscommunication about the necessity for a new central line. Initially we were told a new central line would not be required and we could make do with cannulas however, this advice has now changed. The two long cannulas that were placed last week both failed within the week. Additionally, Ellie can’t be released home with a cannula, so every time we go back in for bloods, it requires more needle sticks. The team have decided that Ellie will need a new central line placed next week. This is just another GA that we didn’t want and surgically placing another line into her heart comes with more risk as it will be the third time. While it would hopefully only be needed for around 2 months before being removed, the thought is that Ellie will still need blood product support and when she spikes a temp, they will need to commence antibiotics within 30 mins, so relying on cannulas won’t be sufficient.
 
We are also required to attend clinic appointments three times a week where bloods are drawn and blood products may be required. This is challenging without a central line as Ellie has developed what seems to almost be a phobia of needles. She’s not so bad with regular needle sticks for drawing blood however, cannulas are very challenging. Her veins are extremely difficult to access, and they almost always roll or collapse. The only way to access them is by having an anaesthetist use an ultrasound to guide the needle. This results in Ellie usually being stuck 3 or 4 times before successfully having the cannula inserted. It takes considerable effort to mentally prepare her for a regular needle and we need to physically restrain her for cannulas. Ellie now says she wants to have the central line back in to avoid more needles.
 
The good news is that Ellie’s GvHD appears to be under control. It has not progressed beyond stage 1 GvHD and her rash has responded to the Methylpred steroids. The rash is barely noticeable and she isn’t bothered by itching. The Methylpred will likely last for another 8-9 weeks.  
 
It’s a full-on job looking after Ellie at home. We’re back in the routine of administering half a dozen medications through her NG tube twice daily, giving her water boluses regularly to flush the medications from her kidneys, and NG tube feeds throughout the night. She is still very weak and needs assistance walking, eating, dressing, washing, and most other activities. We’re trying to get her back into a school routine where she can zoom-in via her ‘Missing Schools’ robot which lives in her classroom however, getting her to participate is challenging.
 
Ellie’s confidence has taken a real beating throughout treatment, which is most evident with her communication and decision making. We had noticed this after completion of treatment last year and it’s even more evident since transplant. She struggles to communicate with her teacher and friends during school sessions and her ability to make simple decisions about what to do or what to eat is almost non-existent. We know she is very intelligent however, we also know she is starting to miss key learning milestones. To compensate, we are developing a plan to have a private tutor come to the house twice weekly to get her back on track and reduce any longer-term learning issues. She is also really struggling emotionally so we are looking at options for emotional/psychological support which I can see as being an ongoing requirement as she progresses through school and needs additional support coping with all the normal stresses of childhood and teenage years. We feel it is best to get on top of some support networks sooner rather than later.
 
Silver linings: Ellie is home with her puppy and her family, and this is great for her mental health; the whole family is back under the same roof and this is great for everyone’s mental health; GvHD and engraftment syndrome are both under control and we consider that there are no ‘major problems’ right now; Ellie’s counts are recovering well and her white cells and neutrophils are at a level we haven’t seen since first diagnosis (11.7, 9.36); so all things considered, Ellie is doing reasonably well.
 
We remain optimistic that Ellie will continue to improve with every day.  
 
PC