Yes, it’s been a while. But be assured if there were developments to report – both good and bad – faith4fabian readers would be the first to hear. So there haven’t been. And that of course is a good development in that Fabian has been doing just fine since his homecoming just over 5 weeks ago. Cell by cell his immunity is rebuilding itself and the all-important white cell count is rising. It’s not all plain sailing and his blood count tracker over time resembles the ftse 100, steady growth over time but many hi’s and lo’s. This means regular transfusions, particularly of platelets, the all-important anti-clotting agent. He is actually allergic to them and nonchalantly reminds the nurses of this on each occasion as if they should all know by now (a simple anti-histamine dose overcomes the allergy). There’s also been the odd infection or raised CRP marker (irregular kidney function) which have meant a couple of stays at our local hosp. but this is all small fry compared to what many others experience post-transplant and as ever we are grateful to God for His continuing grace for Fabian. The date for the T cell infusion has drifted back to early November but there are no concerns, only impatience! We are one of a handful of families being filmed as part of a documentary following the development and progress of the new immunotherapy treatment. It’ll remain under wraps until there are some actual results to shout about and naturally we want Fabian to be one of the first successful recipients of the treatment in which case I’ll be pushing for a red carpet premiere of the film in Leicester Square. Elsewhere, family life presents us with many challenges, some unforeseen, many unwanted, all of our lives having been impacted by this journey we share with Fabian. We couldn’t do it alone and neither were we meant to.
So great to read this! I keep meaning to text you,Lydia, but have changed phones and still getting used to new one :/ and every day brings a challenge of one sort or another, for as you say, remission is a busy time!! I’m so so happy to read that Fabian is home and getting on with life. The tank sounds brilliant and a top choice!!
Caitlin’s high dose and stem cell transplant went as smoothly as possible, tough and not many laughs, but minimal problems which is always a huge blessing. Thankfully Caitlin didn’t succumb to any infections, so we were in for the least amount of time possible. Four weeks still seemed like forever though, so I still only have a glimmer of what it has been like for you. I really admire your strength.
I hope rehab to ‘normal’ life is smooth for all of you, but especially for Fabian. Caitlin is doing well but after the horrendous mucositis, she is struggling to eat and drink normally. It seems to have had such a profound effect, much greater than we were prepared for. Going back to school has been hard too; she was so excited and proud to be starting grammar school, but then found it difficult being different and having disabilities. However, both things seem to have improved slightly just recently, so fingers crossed we are turning another corner. I hope Fabian rides through his recovery without a backward glance 🙂
Fabian is one of the toughest children I know, with such resilience, perseverance, and strength of character. I also understand that this sort of journey requires a team effort, and you and your family are a remarkable team. Enjoy being home, being together and taking pleasure in special moments that you so deserve. Looking forward to your first ‘film’ too!! Much love to you all, always thinking of you, Alison, Caitlin and family xxx