I had a fantastic weekend with the boys to celebrate the end of radiotherapy and some clear results following the latest scans, Harry is currently showing no evidence of disease (NED) which is such a HUGE relief and means we can definitely move forwards and he will be eligible for the trial abroad.
Harry was looking forward to a week of ‘normality’ with no scans, tests or hospital visits this week and time to be in school with his friends. Sadly this was short-lived. Harry and I had to come into MK hospital Monday night as he fell unwell with a high fever quite suddenly. He is on antibiotics although the cause has not been identified yet so they will keep him in for now. The highs and lows can come about so fast, it frightens me. Everything frightens me.
I think that only those that have been in this situation can possibly understand the burden. The enormity of it all is overwhelming – we sacrifice our privacy and dignity to ensure that the fundraising could be a success, we open our hearts to the world and tell everyone how we are feeling, the good and the bad moments are all documented, whilst all the time we are trying our hardest to look after our sick child and to give them the best care that we can, the time and attention that they deserve and need, along with the siblings too. Work has to be put on hold, the stress that goes with that, for now and the future. You can’t plan anything outside of the hospital plan as things can change in an hour or less, and you go when they say to go, holidays are only a dream and cannot be planned yet either. Above all the worst part for me is the constant stress and anxiety of knowing what your child is going through and how terribly unfair it is.
It broke my heart when Harry said as he cried to me this week that to get cancer once was really hard but to have it twice and to go through it all again is just not fair! And it isn’t! Oscar always knows what to do in a situation like this – he came into Harry’s room and made us both smile. Harry is doing a little better now after an overnight stay in hospital .Thank you for your continued support . Love Nina 💙