Things are looking good…

A week has past since my last post.  So what has happened since then?  Actually it’s been pretty hectic (but thankfully in a positive way).

On Wednesday we went to Great Ormond Street Hospital in London for our immunology appointment and a CT scan. The visit appeared to be scuppered when our car decided to break down but amazingly the hospital sent a driver to collect us and arranged for one to bring us home so that was easily sorted.  Dan has been feeling pretty dreadful since that return journey, full of a nasty head cold and that has been a worry. Herbie really doesn’t need any more viruses or bacteria to fight right now.

Great Ormond Street Hospital is always a different experience to Oxford. I’m not talking about the medical care and quality of staff or anything like that. In Oxford we feel ‘at home’. We know where all of the departments are, we know how ‘things work’, we know the consultants really well and the nursing staff and the play specialists. They make us feel extremely special and Herbie is always treated like a celebrity which he loves!
GOSH is huge, bustling and still very ‘unknown’ to us. We know a couple of the staff members who we have seen on every visit but the majority of those we meet do not know us and it makes a difference. Anxiety levels for all 3 of us are always higher. This visit was no exception but it was different to usual. First up we were greeted by a researcher for the BBC who is making a documentary series about the hospital. I was given a radio mic and we were then filmed for the rest of the appointment as well as interviewed. Herbie had a cannula put in and blood taken, two of his least favourite things, and was super brave. Then he went to the scanning room for a CT scan of his chest and tummy. Finally we had an appointment with our consultant, Wasim, although he was actually not there so we met another Dr that we hadn’t met before. We were also introduced to a psychologist and social worker who will be supporting us through transplant. After all of the talking and procedures were complete we were taken to the Lagoon restaurant in the hospital for lunch, courtesy of the BBC.
Waiting at GOSH
The social worker gave us books for the children to explain transplant and being a donor. I read them and they are fabulous but they did make me emotional. It’s such a huge thing we are entering into and what keeps me positive is knowing that as a family unit we are strong but as individuals we are strong too. The question is when do we tell Herbie and Rufus what is coming up and how? It will be scary for them both.
On Friday evening the phone rang at 10.20pm, it was from an unknown number and I knew it was the hospital. My heart was in my mouth and my heels were digging in during the split second before I answered the call. What did they want? Why were the calling at this time? What was so important it couldn't wait until tomorrow? What had the CT or blood tests shown?
Dr Porter's voice was calm and apologetic, he was sorry to disturb me, it was nothing to worry about…I relaxed…a little! Wasim at GOSH had decided to up one of Herbie's anti fungal medicines, it was showing minimal levels in his blood and so he would move from 4mls twice a day to 7.5mls three times a day! It was a big jump! Levels would be checked again in 3 weeks. On Saturday the community nurse, Morag, confirmed the change and also commented on the good news shown by the CT. There was apparently 'marked improvement' which I was thrilled to hear. Other good news came when Herbie had his dressings removed on his neck. The wounds were healing really well and no new ones were visible. Perhaps we were finally winning this battle!

This week has also seen us considering and completing Herbie's 'wish application'. It's amazing what charities offer, the forms are needing quite a bit of input from me but Herbie's ideas and drawings will make the basis of the application. I won't say more yet about his wish or the charity we are applying to but we will keep you posted!

As I type Herbie is extremely well and looking much like his old self and certainly behaving like his old self. He will have a visit to school on Thursday to keep the peer group links/social side of school ticking over but Victoria , his outreach teacher, continues to provide wonderfully stimulating sessions for him at home on a daily basis. So my mind now turns to the inevitable , the transplant looms. Another BMT parent once wrote to me saying " one of the hardest things is having to make your child sick before you can make them better" and I guess we are coming to that point. We have spent the last 4 months trying to make Herbie better and now as we finally seem to be getting there we will need to think about transplant and chemotherapy. Seems this roller coaster just came whizzing down one loop only to be faced by the uphill struggle of the next…

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