Herbie continues to improve daily. He really is such a cheeky monkey and his personality is back , as is his colour, weight and energy. He is definitely the best he has been since this latest episode began back in November 2013. This is great in terms of day to day for him and us but also great as we get closer to the countdown to transplant.
Last week saw our very first appointment at GOSH in the BMT clinic. We took Rufus with us purely to see what the hospital was like, he was quite excited. Although we have been going to Great Ormond Street since last summer we always see the immunology team there so we were in exactly the same place etc but we saw a new specialist, the director of Bone Marrow Transplants at GOSH, Paul Veys. He was fab, totally clear description of the what’s, why’s and how’s of transplant and also calm delivery making us feel confident that this was the right course of action.
We left feeling full of faith in the team/hospital.
The reading materials that he gave to us to look over were rather jammed packed but highly informative!
Before BMT there are lots of tests that need doing and although we have done a few there are more to do. There were lists of foods that he won’t be able to eat, rules about daily clothing , pyjama and bedding changes and lots of info about the chemo, side effects and problems that could arise.
Still a scary read but also so many medical terms and medicine names etc that we are already very familiar with.
Paul Veys told us we were pencilled in for transplant in May but at that point he wasn’t able to give us a date. We were interviewed by the BBC again and the meeting with Paul Veys was recorded. New medicines were added to the already full regime and we headed back to Oxford in a positive headspace.
We have also visited the JR this week for catch up with our Oxford team. All looked good and I finally was able to look ahead a little.
Not working since November has been incredibly tricky. I love my job as a primary school teacher and miss the children so much but my boy had to come first, I know every mother of the children in my class would feel the same. That said I started thinking that as Herbie was finding his way back to school a few days a week then maybe I should too. So I agreed to return this week. Imagine my despair on waking this morning to find Herbie was sporting a temperature of 38.1! He was unable to go to school as planned and I went in to work , for the first time in months , feeling more uptight and anxious than I had anticipated. The fantastic children were such a delight and lifted my spirits, even answering the register with “good morning lovely Mrs Taylor” which was so sweet! I got home with a thumping headache and feeling drained to find a boy looking happy and quite normal. By bed time he was pyrexial again at 39! Gutted.
The phone call finally came after an hour at home, Maria , the BMT nurse at GOSH had info on dates etc for transplant. So we can now begin planning…count down begins…
Living with NEMO 
Keep strong Taylors!
Kids in class will be lucky to have you whenever you return Em! Priority is Herbs, and Ru!!! You need to sort out kiddie at home before other people’s! And I say that as a teacher, love my kids but MY kids come first! Love you all xxx
All sounds hopeful xx
Wow, you are dealing with such a lot. I’m so glad that you are being cared for by the team at GOS, have you met Bobby Gasper or Alison Jones? Its so difficult to give our children normal life experiences whilst coping with all of the medication routines etc, but you have obviously succeeded in keeping them integrated into ordinary life and accepting (mostly I expect) their medical needs as a normality. Good on you. 🙂
Thank you Liz and thank you for sharing. Alison Jones has been involved with us for some time via Oxford but in London we are seen by Wasim Qasim and now Paul Veys. All three of them are fab x