Great news! Alf has now been allowed home! We will be attending the follow up clinic twice a week in London, to ensure the good progress continues.
We were allowed home after the clinic on Thursday of last week. Phil came to pick us up by car, as Alfie is still not allowed to use public transport yet. We will need private transport door to door whenever we go anywhere.
Although Alfie is not now neutropaenic, his immune system is still intentionally suppressed by the medications he is taking. This is because in order for Henry’s donor cells to continue establish themselves successfully in Alfie’s body, those cells involved with recognizing “foreign” cells must be suppressed, so that they stay calm and continue to thrive in Alfie’s system. Alf has been on two different immunosuppressant medicines at the same time to prevent ‘graft versus host disease’ (GvHD). He has now been reduced down to just one type of immunosuppressant medication, which he takes twice a day, morning and night.It is the blood levels of this medication which are monitored weekly.
Once Henry’s donor cells have fully matured in Alfie’s system, the Bone Marrow Transplant team (BMT team) may then consider reducing the levels of immunosuppressant medication that Alfie is taking. As I think I may have already mentioned before in one of the previous posts (sorry if this is repeated!)
Alfie may be taking immunosuppressant medicines for an indefinite length of time to prevent GvHD. So, while he is on any this medication, he is a little vulnerable to infections. So we just need to ensure that he is protected from any unnecessary infections – for example, if anyone has a cold or an infection, it would be best for Alfie if any contact is simply postponed until the infection has passed. Similarly we will be avoiding any crowded places. For example, he can still go to the cinema, but not when it is crowded…but public transport is completely a ‘no go’ at the present.
Alfie has his first session with his private tutor this morning, so I need to go and encourage him to burst into action, so that we get there on time!! More later today…..
Your shot , Dad!
Alfie and I often chat about home, and it leads to chatting about all the things we miss about it.
The main things we miss are regularly seeing all the lovely people we know. The simple freedom of going about our usual day to day life, and being part of a normal routine, in which we see, so easily, all those people who share parts of that daily life with us. This is so precious!
We have become part of a different routine and system, while here as guests of the NHS to receive Alfie’s treatment at UCH. We have made wonderful friends with staff, with fellow patients, and their carers. Wonderful people that we would never have met, had it not been for our shared circumstances while on the ward.
We have made many new friends while here, and have been privileged to learn so very much about valuing what we have. Having the opportunity to step into a sphere which has opened our eyes, and we have seen, first hand, what some people cope with – without any choice. At first, having no inkling that it will change their lives forever, so drastically.
What is amazing is how, we, (as humankind), just find a way to carry on, not without massive challenge and difficulty, but do eventually find a way, somehow, to get back onto our feet, and continue to adapt to the situation that has befallen us. This is where the true value of those special people around you, come in. Carrying you forward while you are adapting to the change. People really are wonderful.
Obviously at times like this, those who are closest to you are there, playing their part in supporting and carrying you in many different ways. But there also, at the same time, lovely friends, individuals, even acquaintances, who you know as part of your regular life – those who come forward to become an important part of that wider system of support that has carried you through that journey. Just a simple message, can mean so much. These messages have all served to fill in the ‘chinks in our armour’ and make us stronger, and feel glad – and all the better to have known – that they are out there. Thinking of us. Simple things like that mean a lot. Such a lot. XXX