Since I began this blog three years ago, I have always held to the notion that a half full attitude is better than a half empty one. Not just an empty sentiment – the book of Proverbs warns us that ‘that which I fear shall come upon me’. I knew too, though, that there would likely be entries when it would be hard to be positive and this is certainly one of those.
It had been looking uncertain last time as everyone suspected the treatment was failing because the disease level had increased, though we were hoping some of the T cells still remained. Sadly, though, it was confirmed by the latest bone marrow check that there has been a further rise in blast cells (visible now at cellular level) and that no T cells are detectable. Naturally, we and the medical team are perplexed and hugely disappointed, especially given Fabian’s positive – albeit transient- response to the previous batch of T cells. No one can say for sure why this time round has failed. It may be that his own immune cells have since developed antibodies that destroyed the modified cells, or possibly that the leukemia has evolved into a different variant that isn’t identifiable by the T cell receptors. This news now requires a change of course since there is no alternative treatment available that has curative intent, so we are left with disease control and symptom care as our only option. Nowadays, this can be extremely effective in suppressing many cancers, although we never wanted to settle for disease management and have always fought to obtain whatever would offer Fabian the best hope of a cure. In this respect, we were encouraged by our consultant who said we have been the best advocates for Fabian we could be (or isn’t that just being a parent?). In the meantime, who knows what breakthroughs are just around the corner? Already, the use of genome sequencing is leading to so-called personalised drugs that will one day render chemotherapy obsolete. Immunotherapy too, is improving as more evidence, particularly from the U.S. studies, comes through. I guess, though, if Fabian was writing this he would be shouting ‘no more drugs and hospital stays!’ and that is something we must respect. You reach a place where the equation says ‘quality of life>quantity of treatment’.
We are now into the vacation period (or staycation in our case) but Fabian’s has already been interrupted by 5 days in our local hospital because of (another) infection. At least the en suite facility and room service was excellent. During this time, he had to attend a daycare appointment at Great Ormond Street so they sent him by ambulance with full blues and twos. The usual 90 minute journey took just 30! However, we hope to fit in more exciting day trips if this period of glorious weather persists. My closing thought is to remember the occasion recorded in Luke 8 of Jesus healing Jairus’ daughter, a child the same age as Fabian. When He was delayed and the girl died, they said to Him ‘why bother the teacher anymore?”. But He merely told them not to fear and went on to raise her to life. I like that. Jesus always has the last word regardless of our human understanding. And He never minds being bothered. Have great holidays!
6 Responses to Change of course
I continue to pray for Fabian, as I have done ever since we met him in the Marsden
Thanks for your kind support. we are so encouraged that prayers are continually being offered up for Fabian and we believe the persistence will pay off!
God bless you
Hi Lydia. THANKYOU fur being so open and sharing the ups and downs you are going through. You are in my prayers. You are right God has the final say. His love fir Fabian is beyond what we can even image. Let me know if I can do anything. Our paths don’t seem to cross but I’m often free weds or fri fir a cuppa. Take care. Much love. God bless. Lv Debbie xx
Thanks for your kind words. I’ll pass them onto Lydia and trust you’ll both be able to meet up in due course.
I have often think of you and your family ,if not every day !
We are all children of God , we are sharing your pain and joy with you .
We pray that you stay positive and keep your sense of humour at difficult times .
Lots of love and prayers .
So so sorry to hear the outcome in your last entry. It hurts to read it, and I cannot begin to understand how you all felt and feel. My heart goes out to you all. I know we can never predict what will happen with these incredible ‘beyond science’ procedures, but with Fabian as the recipient, it was such a shock to hear it had not gone as planned. Fabian has the best disposition and spirit to nurture a positive outcome. His strength and courage is to be admired, as is that of all of you. I think of Fabian and the family so much.
Caitlin sends a big high five and a thumbs up to Fabian. She is chuffed to hear that he saw the Lego movie on his birthday! Like Fabian, she keeps building and creating and loving Lego more and more 🙂
Fabian, keep being fabulous!
Sending you all so much love, Alison and family xxx