Treatment

Since the diagnosis was confirmed on Wednesday afternoon much has happened; Ryan as had the anti-body infliximab, 2 sessions of extra corporal photopheresis (ECP) and also an infusion of mesenchymal stem cells (MSC). They didn’t need a donation of these cells from Gareth or I as they had a suitable match frozen in storage. It is amazing how quickly the hospital here have been able to arrange these specialist treatments and we are very grateful for this. The only down side being that we did not have opportunity to ask much about what the treatments involves in advance of having them, which meant that often we had to tell Ryan what was happening last minute and didn’t have much time to prepare him.

I know that everyone is hoping that I will say that Ryan is a little better but in all honesty this isn’t going to improve daily, more weekly.

His mouth is showing signs of improvement in that the thick white coating of his tongue is very slightly pink in places. He has started drinking water again which is a good sign. We cant see the rest of his mouth as it hurts to open it. His skin is much the same although a new area on his head and neck can be seen. His liver enzymes are almost all within normal ranges but the diarrhoea is impacting on the liver function now too.

The GVHD of the gut causing sickness and diarrhoea remains the worst problem; the sickness is much better controlled after tweeking some of the anti-sickness medications. The diarrhoea on the other hand is relentless. We were told he was passing between 2-3 litres a day, more fluid that they can give him. The stool is watery and often red with blood. It floods out of his little body. I have to fight back the tears when I change him and clean him up; it is devastating and totally exhausting for Ryan. He weighs 2.5 kilo’s less than he did and is painfully thin. He has started to experience pain but it is intermittent and he is managing with paracetamol. The doctors are surprised that he isn’t on morphine but this is a good thing as morphine, although great for pain, brings a whole host of new side effects.

The doctors had told us that his stomach was likely to get worse before it got better – there is no quick fix for GVHD. We just have to hope that there is not a progressive deterioration.

Sleeping is obviously a problem for Ryan, until a few days ago he sat on the commode every time he needed a poo, sometimes he was only just settled when he needed to go again, rarely did he get chance to sleep more than 15 minutes at a time. He did not have one accident but it was very stressful for him. He was obviously very sleep deprived, he was almost hallucinating and waking from broken sleep with racing heart and feeling panicked. The doctors spoke to us about sedating him during the night to give him chance to sleep, this is often required for these circumstances, but this upset Ryan very much. So we talked to him about how essential sleep is and that if he didn’t sleep he would be even more poorly. We suggested he use a nappy at night and we would change it immediately – he reluctantly agreed and although it meant he wasn’t in and out of bed the sleep situation was no better. So then we asked him to try not to wake up when he needed a poo, to trust us to check his nappy and change it only when needed and to try and stay relaxed while we changed him (so hard for a proud 6 year old to have to do this but Ryan knows the alternative and is trying really hard). The nappies cannot always contain the volumes of stool, it floods out the nappy and so his bed is covered in changing pads so we don't have to keep changing the sheets. This seems to working for him and although his sleep is still broken he is getting about 8-9 hours a night which has had the desired effect and meant that he can be awake more during the day.

He is talking more and interested in watching his favourite YouTube video’s again on his beloved ipad. He has even requested that we bring in his x-box and has played on-line with a couple of his friends. Obviously he is easily tired, which he finds frustrating, but at least he is doing something that he loves which makes him feel slightly normal.

Gareth and I are taking it in turns sleeping in hospital with Ryan and sleeping at the parent's house. In hospital we get a total of an hours sleep on a bad night (if you add up the ten minutes here and there) and a total of 3-4 hours on a good night. The feeling of panic I felt has gone and we are both coping ok. Gareth has always said he will sleep when he's dead and so he even struggles to sleep at the parents house, and on my nights at the house I try not to think, but the sounds of machines alarming fill my head even though they arent there and I have to let the tears that I hold back all day fall silently onto my pillow.

Ryan has a superb medical team looking after, he is also visited regularly by the doctors from the day clinic and gets regular pop in's from the director of the children's hospital. Everything is being done to support him through this period and get him back to good health.