Before I really start talking about Seth’s progress I wanted to thank everyone for their kind words and support and for sharing Seth’s video. It means a lot to Seth’s dad and I. I have had a few questions about donations and the wear yellow day. I will continue to respond to all of your questions as quickly as i can, but I thought it would be helpful to post some links here for easy reference.
First of all i would like to highlight that our aim with #wearyellowforseth is to raise awareness and show Seth he is not alone in this.
Links I have been asked to share:
I have also had a number of friend requests. Unfortunately I am not in a position to add them as my Facebook is my personal page. If you would like to add yourself to this event:https://www.facebook.com/pages/Wearyellowforseth/946709205361894?skip_nax_wizard=true&ref_type=pages_feed. Updates will be posted here and you can also share you yellow pics on here too!
Now to the boy in question!
This week we have been told that Nik, Seth’s dad, will be the donor. We are both an equal match. However, I carry a virus called CMV (most healthy people don’t even know they have had it or may suffer a sore throat). Which stays in your system after you’ve had it like chicken pox. About 80% of the population is assumed to carry it, but for someone like Seth it can be quite dangerous.
ATG started this week and as it will wipe the T cells and put him more at risk.
We were allowed to take him into the interview room on the ward to be able to have a family photo. We did not have a picture of all 4 of us (other than one taken at halloween where we were all zombies covered in face paint!) and I felt like I needed to get one incase we don’t get the chance again. Some people may consider this to be pessimistic. But I consider it to be realistic. Seth is not guaranteed to get through the next 4 months. A bone marrow transplant is a dangerous risky procedure when you don’t have all the complications Seth has. Seth’s consultant has been very careful to remind us of this. So i just wanted to make sure it was done!
I came home on mothers day as I have to have a root canal (o joy to the WORLD!) so we’d planned to do it on the Saturday. Unfortunately, it seems i have been a bit tired and run down as Saturday morning i develop a cold sore. This means I can’t have direct contact with Seth. I was allowed into the entrance part of his room to see him through the window. But he was sat crying. So i went to get nik. The doctors saw we were a bit upset so allowed me to go in and see him if i wore a face mask and was only in there briefly. So he got to give me the things he’d been making with the play specialist and have a quick cuddle.
This last week, Seth has remained well in himself. However, he doesn’t like things to run entirely smooth! So he started the ATG drug on Monday of this week, which kills all off the T cells which have been causing all the problems and killing his immune system (making him have less immunity than he did before the initial transplant). When having this drug it is common for people to have a response, usually a temperature spike so it is given with Piriton and hydrocortisone cover. Seth managed it fine though with no temperatures! He did has a slight temperature increase on the Thursday evening but it came back down on its own within half an hour. However, on two occasions I went to pick him up and he had a wet right armpit…just one which i found strange. The first time i had picked him up and took him of the toilet so i thought i must have had a wet hand from washing them. The second time there was no water in sight and i realised his Apheresis line must be leaking medicine.
This is a problem for two reasons. 1. If it has a hole or has been displaced by being pulled then it is a site where infection can get into his body. 2. It is needed for the antibiotics Seth needs to help keep him well and protect him from infection, the blood he needs as he cannot maintain his red blood cells or platelets and so they can give him neutrophils. Because they could not risk infection they had to stop losing the line immediately and do an x ray using dye through the line. This could not be done straight away. So a cannula had to be fitted. Seth hates this. They use numbing cream on the skin, but his veins are weak from years of having to have them so it always takes a few attempts to get them in. He cries so much, but never moves. He’s really so good with it. Once fitted he will not use the limb it is in. This time it was the foot (after 3 attempts in other places), so he would not walk with it in.
So far the ATG has done what it should and he has no lymphocytes (T cells or B cells). There is a chance that his own neutrophils may come back, but this would be a surprise and so far (4 days after ATG has finished he still has none. So at present he had no immunity of his own at all and is entirely reliant on the buffy coat (neutrophils given by infusion that die quickly) and the anti biotic/anti fungal/anti viral medication he is on.
All the medication that Seth is on takes it toll on his body and he now has very loose diahorrea (sorry if you’re eating!). He manages it well, getting to the toilet and he doesn’t appear to get any stomach cramps so that’s good!
Seth has been on Prednisolone IV or Oral since his original transplant in Nov 2010. (see previous blog entry here).
Seth’s getting a little bored in his room and is become more and more like a coiled spring waiting to pounce….I’m not sure how he will cope with another 3 or 4 months in here!!!
He’s asked to go home a couple of times this week, but accepts it when he’s told he can’t. He already knows but I think just likes to mention it every so often. This week however he has discovered Teenage Mutant Ninja Turtles….so we get a break from Toy Story 3 and Paw Patrol!!!!