It has begun – we are now into step two, where we are going to destroy our child’s vital life-producing marrow forever. It feels very very weird that we have now started an irreversible process and in a week’s time, it will be replaced with someone else’s.
Here’s some interesting stuff we found out this week – Scooby and Rocky are different blood types. You’d think that having the same type would be the number one thing on the list of things that needed to match, but apparently it’s a secondary issue that they can sort out, and so after the transplant, Scooby will change from O+ to A+ (like me). And here’s another thing – Scooby will then have two different types of DNA in his system. His blood will continue to carry Rocky’s DNA, but all his other body tissue will carry his own original DNA. How crazy is that? That’s a crime novel waiting to happen right there.
We haven’t told the kids yet that they won’t be able to see each other for at least a month, possibly longer. We’re just going to take it a week at a time and tell them it’s not time yet. Only Richard and I and two other named people (my mum and dad) are allowed to come into contact with him and we need to be ultra-careful not to let anything pass to him. He’s been neutropenic before, but never at the severity where his immune system doesn’t even exist. Even once the total isolation has lifted (once the bone marrow has begun to engraft), he has to be on a really restricted diet for the next six months – a ‘clean’ food diet, which involved mainly fresh ingredients with sources that can be traced to make sure there is no chance of contamination at all. So all the little bits and pieces we bring him from outside the hospital, like strawberry milkshakes, Quavers crisps and the occasional Happy Meal, will not be allowed.
The first two days (yesterday and today) have been about destroying the T-cells in his body, and he had a reaction to the first dose and needed to be put on a nebuliser for the rest of the evening, but as with most reactions to this medicine, it passed and he tolerated the second dose okay. Unfortunately, for the third day in a row, his seizures have made a comeback and he’s had about three a day without any clues as to why. As he physically deteriorates in the next week, we really hope and pray that they will subside, as his poor little body will be going through enough already.
On the plus side, we got to enjoy being all together on Saturday for Baby’s second birthday. We’re pretty darn good at hospital parties by now and we had lots of fun with music, dancing, games, bubbles, presents and a movie. A good way to celebrate Scooby’s period of respite between the two treatments, and our baby not being a baby anymore. She had a great time there and with the extra relatives she got to see on the way home, and today she even began a new song she made up which consisted of the lyrics ‘Birthday to you again!’ One of her presents included a photo book for her of family members and friends because she loves books and people and now she can sit and chatter to herself to her heart’s content: ‘Ooo’s dat? Auntie Beth! Ooo’s dat? Uncle Phil! What’s Daddy doing? He’s weeding a book to me – that’s me!’ :)