Today: T+5

So I would like to start with my opinion on chemotherapy…..It’s a BITCH (sorry mum).

I should probably expand on that statement a little. Chemo in our situation is a necessary evil, and it is EVIL. Looking back at Seth’s first transplant we made the decision we did because, well we were told that he would not survive chemotherapy. It got us this far. But the reality is that if Seth would have been well enough for chemotherapy in the first place, we may not be here now. So we are here and we have used chemotherapy this time to try to get a better graft and a cure. It’s necessary, absolutely and I do not regret the choices we have made.

But,

My baby boy is so unwell with it. His mouth is full of bleeding ulcers, he’s violently wrenching and vomiting bringing up bile as he cannot tolerate anything in his stomach other than 6ml an hour of Dioralyte (and he has to have 2 hour breaks every 4 hours).

They are also concerned that he has VOD (Veno-Occlusive Disease) another chemo side effect. It can be life threatening. However, Seth was on the treatment from the first day of transplant because of worries about his liver, so hopefully it will not develop into a severe form.

Then there is his skin. His poor skin. It looks like sunburn and apparently also feels like sunburn, so its painful, especially when he is touched. In parts the skin is a bit worse and sores have developed. His hands are the worst part, which we knew was likely to happen because of the previous damage to them as a result of the Graft Versus Host Disease. They are completely raw in places and oozing a bit. We have special none stick dressing on them and then they are bandages to stop him picking. But when we change the bandages just the air hitting them makes him cry in pain. We also have to soak them in warm water with antiseptic lotion in and he is so scared of putting his hands in I have to force them in the water. He just looks at me sobbing, it makes me feel so bad but we can not risk his hands getting any worse.

my baby’s poor hands

In addition to this he is still retaining fluid and it seems to be going to his genitals so they are very swollen, this in addition to the sore skin makes it a very tender area.

So we have all that going on with the chemo, and he is also still spiking temperatures and has a high CRP (inflammation marker in the blood) so the doctors are concerns about a fungal chest infection. He is also needing more and more oxygen each day to maintain an acceptable O2 level. This may be partially down to the chemo (which is likely to have gone to the already damaged area in his lungs), but also likely to be related to an infection. As a result his antibiotics have been changed and his oxygen requirement is being closely monitored.

He is now getting Buffy Coats again (neutrophils that go in, attack and then die) so hopefully this will help him deal with any infection alongside the antibiotics until the graft takes and he starts to get his own protection. Hopefully this will be the beginning of next week, but it may take longer. There is no way of telling we just have to wait and see the blood results each day waiting for the 0 to change to 0.01 or higher and then watch is hopefully keep climbing. As that number climbs we should see the side effects of the chemo start to reduce and we should start to get our little man back.

His Kidney’s continue to be a concern and are being very closely monitored. He has had an ultrasound today to check his liver, kidneys and stomach and although there are changes they are not significantly concerning at the moment, but they need to be closely monitored.

In himself he is tired, and lethargic, which is understandable considering everything that is going on. He is so good with everything that has to happen, dressing changes, creams, baths,all sorts of things keeping him awake and that are, currently, very painful. We keep saying how brave he is. But I don’t like saying it. I don’t want him to think he has to be brave, or do anything that we want just because we want him to. I want him to be pain-free and a normal 5-year-old. I want him to have a tantrum because he has to eat his greens or because he can’t watch his programme all day long, I want him to run around and have to be told off for running into his brother, I just want him to be able to go home.

So right now, we do what we can to make that happen. We bathe him, put his creams on, keep his hands clean, change his bedding, give him medicines, make sure any changes are discussed with the doctors and nurses and we just keep going. We make sure we are there so that when he wants to read a book, or play a game he can, and we keep taking it day by day.