Today: T-7

So today we learn the importance of taking it DAY BY DAY.

After spiking a temperature of 39.1 at 9pm last night and vomiting Seth continued to have a very high temperature all night and throughout the day with paracetamol not really bringing it down. He woke a few times to vomit and was upset and tired for most of the day.

By 10am he had been given all the doses of paracetamol he was allowed until 10pm tonight. So they decided to try him with another drug called Promethazine Hydrochloride. This drug sometimes helps to bring a temperature down, but sometimes doesn’t. But it also makes them sleepy. Which was a good thing as Seth’s presentation was being made worse by him being incredibly tired.

We eventually managed to get him to have a sleep at 2pm. His respiratory rate was high and his pulse up at 169. His O2 level initially was down to 93, but it came back up to 98 within a short while. Once he fell asleep properly he settled.

It is really worrying to watch. Despite being realistic about our chances of getting him through this you are never prepared to see your child unwell and in the back of your mind you worry that you have seen the last of his cheeky smile. Every time he spikes a temperature you worry.

So we make plans. No pessimistic plans – this battle is far from over. We have as much a chance of getting Seth through this as we have not. But we need to protect ourselves. At the minute we have so much stuff up here that it would take a few cars and a lot of packing to be able to move back home. If the worst happened I do not know how I would be, but I really do not think I would be wanting to worry about getting things home. So we have arranged for a family member to come and collect anything we do not need here. It will be one less thing on my mind,and although I don’t particularly subscribe to fate…. I would rather not tempt it.

So we were back being worried and on tender hooks again, and Seth. Well Seth slept for 2 hours and woke a different child. He still had a temperature, but he was chatty and cheeky and sitting up. He still didn’t really want to play but he ate a few crisps and some cereal. He also managed to get check that the nurse and I were doing everything as we should….yes sir!

Treatment

Today Seth started chemo with Treosulfan. Traditionally a different chemotherapy drug has been used called Busulfan, however, this drug was proving toxic and had to be monitored. Treosulfan does not require this. However, it is relatively new in use and research into whether or not levels of the drug in the system is something that needs to be monitored is ongoing.

In addition to Treosulfan he has started a drug called Defibrotide. This is an incredibly expensive drug used to treat a damaged liver. Seth’s liver is a concern going into transplant and as such he has started on this drug in order to treat the current damage and to hopefully prevent any further damage, or the current damage from becoming significant.

Seth’s day has now changed, the Treosulfan can effect his skin, so he has to have two baths morning and night and a bed bath at lunch time in addition to hydrating cream being applied throughout the day.

Also chemotherapy can cause sores in the mouth so hygiene is incredibly important. We have to clean his mouth with a sponge 4 times a day with a mouth wash type product and a Bonjella type product. In addition to this I clean his mouth 4 times a day with sterile water and make him drink 4 times a day as well. We also clean his teeth twice a day as you would normally but he is not allowed to use the same toothbrush twice.

When you have chemotherapy you can secret the drug in your body fluids, so to protect ourselves we have to wear gloves anytime we are dealing with any of Seth’s bodily fluids – so his mouth, nose and when he goes to the toilet. If we were to have contact it could affect our immune system.

So busy days – but hopefully that will make this time go quickly as now I am just wishing the days away, desperate to come out the other side.

But we still take it day by day.