It’s World Cancer Day today;4 February 2019 and Ben’s just beyond his 100 days post transplant. We have so much to be grateful for.
Where to start? We left Bristol just before Christmas and returned to a newly decorated home. It was a real blessing to know that so many friends and family wanted to help while we were going through a bit of a time and really made all the difference for us.
Ben was very happy to be home and we were all relieved and thrilled to be back under one roof together. We have continued to wipe things down for Ben and he’s now swapped bedrooms with Rose, meaning he has his own bathroom, so we can ensure he stays as clean and healthy as possible!
Cleaning Lego and wiping books down as we sorted his bedroom out has been a labour of love and also really exhausting! Christmas was very quiet and life has remained that way over recent weeks.
Something James and I have been particularly aware of is the girls’ need for support in the weeks post BMT for Ben. It’s actually been very surreal being back together and living through this experience has brought a lot of things into focus for James and I about what matters most.
Our world was shattered last June and mummy being largely with Ben over six months in hospital, has definitely taken its toll on our girls. Never underestimate the impact that having a sibling with cancer has on their fellow sisters or brothers; it’s huge and the tiny things you think they are going to be able to cope with, become the most difficult obstacles. We are so grateful for the support we are receiving from The Rainbow Trust and a Psychologist at the moment for the children and our family as a whole.
Ben has had some great news since being home. In Bristol, he overcame two horrendous gut infections, CMV being the one which could have potentially prevented the transplant from being successful. After a couple of very difficult and quite traumatic weeks when Ben was extremely poorly, by some miracle, he began to turn the corner. By the time we left Bristol, CMV was non-existent.
However, in the first couple of weeks that followed back home, it appeared that CMV had returned and the numbers began to rise again, much to our dismay, so we were informed that he had to go back on a stronger drug to be able to hit it hard again. Unfortunately, this drug is a little more hard-hitting to the kidneys as well and given Ben’s camel like nature when it comes to drinking, there’s been a lot of nagging going on!
Still, today we were informed by our Consultant that last week’s blood results showed that CMV is undetectable again, which means he will go back on a more moderate drug in a few weeks’ time, which will help keep it at bay and hopefully gone!
We have been so blessed by supportive friends and family in these turbulent months. We are having to keep ourselves to ourselves quite a lot at the moment to give us all time to recover and for Ben to get back to full health, which has meant we’ve not seen anyone really in recent weeks, but we will look forward to seeing some of you in due course, as Ben gets stronger.
Reflection
Our lives are very much changed by last year’s events and it’s put many things into perspective for James and I about our lives, our family, what really matters. We have met the most amazing and incredibly special families along the way and been blessed by a network of incredible and dedicated NHS staff and charities, who we have relied on and who are now an integral part of our life.
This journey is not normal and it is unrealistic to expect that things would be exactly the same as they were before it all started. However, with every day we are moving closer to a new normal, whatever that is.
Ben will likely be on medication for the rest of his life, but his sisters have their brother and we have our son and that is something to quietly celebrate every single day and all we hope for is time; quality time and quality fun.
All you need is love and we send it to you all in abundance xxxxx
Amazing news! X