Grandad on Duty
Yesterday saw us heading up to GOSH for another dose of methotrexate administered by lumber puncture. This was our fourth trip since being discharged and we have been starting to feel like pros with our routine. We know what time to leave the house (early!), the route, what to pack and what we need to help cheer Hugo up when he comes round from the anaesthetic. However, this trip was different. Richard and Henry were off to Legoland so grandad was on duty!
In the early days post diagnosis Hugo would cry when anyone came into our hospital room. Not just doctors and nurses, but friends and family too, my dad included. He was too shy and lacking in confidence to go into the playrooms. We had to carry him everywhere and he would often cry if I attempted to leave the room. He’d always been sensitive, but understandably his hospital admission had shaken him and it was heartbreaking to witness his fear and to not be able to do anything to reassure him. To watch him yesterday toddling down the hospital corridor to the playroom, dragging my dad by the hand, was a measure of how far he had come in just a few short weeks. Yet again I was amazed by my little man’s strength and resilience. Despite our surroundings and our situation it was impossible not to smile, to feel joy and intense pride.
Hugo’s counts have risen slightly. Not as much as they would like, but enough to start him on a daily half dose of his new drug, mecaptopurine. I’ve been feeling quite apprehensive about this one. It’s the first chemotherapy drug that we have been responsible for giving to him at home and it comes with a box of surgical gloves and instructions on how to safely administer it. That alone is daunting, but for it to be effective Hugo has to be nil by mouth for an hour prior to and an hour after taking it. He’s not even allowed his beloved milk, which I suspect is going to be tricky.
As this current phase is fairly short, our key worker nurse has already started to talk to us about the next phase, interim maintenance. Like phase 1, there is an option to take part in the UKALL 2011 trial. This time the trial randomisations are linked to the treatment in phase 5, giving a total of 4 possibilities which will decide the remainder of Hugo’s treatment programme. The next 3 years of our life will be mapped out with regards to treatment which is both a relief (I do like to have a plan!) and terrifying at the same time. The nurse gave us the information during our last trip to GOSH, so this week I took advantage of one of Hugo’s trips to the playroom with grandad to ask my list of questions before Richard and I give our final answer next week.
We are both keen to continue with the trial. While Hugo won’t benefit from the results of this one, he is currently benefiting from previous trials. This current phase of treatment is less intensive for low risk patients than it was before research and trials. If previous patients hadn’t agreed to take part in those trials, Hugo’s journey would be more difficult than it needed to be. We would like to pay that forward so children in the future can have similar benefits. These young patients go through enough and we want to do anything we can to help. However, Hugo is obviously our main priority and our desire to help must be balanced with his needs.
