Adam has been completely wiped out by the first cycle of immunotherapy. He’s been as bad, if not worse, than when we brought him home after surgery and high-dose. His skin is pale, his eyes are sunken, he has visibly lost weight. He looks, and is, weak and frail. He’s simply not the child that we took into hospital to start of antibodies just two weeks ago. Being honest I’m surprised by how hard he’s been hit. I’ve spoken to other parents, I’ve read about other children,but still I expected things to improve, for him to be on the up, once we got home. I find it hard to think that we have chosen to do this to him. I look back a few weeks to the little schoolboy singing his heart out at his end of school assembly, and contrast to this past week when Adam has scarcely been able to muster enough strength to speak at times.
Rewind a week and we were given the all clear to leave hospital late on Monday morning. Adam had once again been experiencing diarrhoea in the early hours so we gave him another imodium, and asked for more to take with us. The journey home was always going to be long, no need for it to be messy and uncomfortable as well if preventable. By the time we had cleared up at the parents house and packed the van it was past one o’clock when we set off. We didn’t have a plan for the journey home; as we left Greifswald we had no hotel reservation, no Eurotunnel booking, only an aim to be back in Epsom on Tuesday. Adam was settled in the back, watching his favourite programmes on the laptop, portable antibody pump alongside him on the seat. He didn't want company, or conversation; he had no desire for snacks tucked away in the cupboard next to him. He just wanted to be left alone, and to get home. I'm glad we organised the journey how we did, we couldn't have made him any more comfortable. The extra travelling time was worth it for that alone, ignoring all the other stuff it enabled us to take.
The longer we drove the more we decided the best thing would be to get as far as possible, stop off somewhere to sleep, and then make a reasonably early crossing back into England on Tuesday. Although it doesn't say so on the Apple commercial, I can tell you now there's there's an iphone app for making Ibiz hotel bookings; and it works too. Whilst parked up in a service station in Dortmund we booked a room at the same hotel near Antwerp that we'd stayed at on the outward journey. After we'd arrived there just before midnight, carried Adam to his bed and got him settled, we then booked Eurotunnel for midday on Tuesday. Just after two o'clock on Tuesday we arrived safely back at home. It was good to be back, and reunited with Jake and Jessica after 17 days away.
Initially Adam improved after we got home; looking back now it was just a temporary fillip he received from being home and back with his brother and sister. He was off into Jake's bedroom playing on the xbox before we knew it, and I stupidly thought normal service would shortly be resumed. Wrong, wrong, wrong! Over the coming days he alternated between bed and sofa, watching television, and not wanting to engage in very much of anything or anybody. He slept on and off throughout the day. It was a throwback to some of the dark days that have gone before. He continued to eat which was a plus, though nothing like normally, and several times tea was skipped completely because Adam had already settled down for the night before it was even prepared. He's been waking up very early ever since we returned, and that's not helped either. His sleep has gradually become less broken; the EEG on the Friday before we left Germany was off the charts and whilst we were in hospital, and for a while after we got home, he would often become disturbed during the night and start talking out loud in his sleep.
As the days have gone on Adam has slowly started to improve. We had hoped to see a marked change once the antibody infusion finished and the pump was disconnected last Thursday at the Marsden. It didn't happen. Everything has been very steady and very gradual. Day by day he is eating more; his weight on Monday was 23.3 kilos, down from 25.9 kilos when he started immunotherapy on August 1st. Yesterday was the first time since we returned that he has done a full day, and gone to sleep at what we would consider to be a normal time. He still can't do a great deal though, his energy levels are way lower than where they should be. At the weekend we took him to the caravan, but he didn't venture out much and when he did we had to take him in the pushchair. Given the difficulties we've experienced we are having him fitted with a wheelchair ready for round two - we hadn't been prepared at all for him not being able to walk out of the hospital under his own steam.
We thought we'd gotten off lightly during the stay in Germany, and in truth we probably did. No constipation, no pain, no sickness, some diarrhoea that was easily controlled, a little fluid around the lungs and no sign of the persistent coughing that some children experience. Unfortunately, after being home for a few days Adam started to developed a cough of his own, a deep chesty cough in which you could hear the phlegm rattling around inside. It gradually got worse, and on Monday whilst at the Marsden for bloods he was looked at and listened to by a doctor, the upshot being that he in now on a course of antibiotics to try and clear out whatever is affecting his lungs.
Despite everything there is no letting up. Adam has started on his 4th cycle of 13-cis-RA, six capsules per day for the next two weeks - time to prepare for more peeling skin and cracked lips. We are due to start back for Germany on 3rd September, but I am certain he will need to be clear of this chest infection first. Fingers crossed he shakes it off pronto and manages to put some weight back on before we take him out to get battered all over again.