Where do I start? Probably with an apology. It’s been some time since my last blog post and I know that some of you that are not on Facebook or that don’t see me daily will be wondering what has been happening. Well I’m pleased to report that things have been going well and I have quite a lot to report!
After the hospital admission in November we had a speedy recovery. Within a day of being home Rufus and other friends and family came down with the same symptoms confirming that Herbie had indeed just had a virus. I chatted with our GOSH immunology nurse who reminded me that he was only hospitalised as he has a Hickman line. The Hickman Line must remain free of infection and any fever could potentially be a line infection.
As the days went by we all got back into routine. At the start of December there was much excitement as our North Pole elf returned to spend the month with us. Last year he helped Herbie get through some tough times.
Everyone was pleased to see that he had returned as it heralds the run up to Christmas has started.
Dan and I were excited but cautious…we know how quickly situations can change so we vowed to continue to take each day at a time And enjoy it. This was kicked off by a lovely ‘tea’ at the Randolph Hotel and a little Christmas shopping in Oxford courtesy of the lovely Lynsey and Archie. They had given us the voucher back in the summer whilst we were in GOSH and it was great to finally get the breathing space to use it. We had a lovely afternoon.
On the Wednesday we had a big day of appointments at GOSH. You may recall that our GOSH consultant agreed to bring the scans forward a few weeks in order to see if the iv Micafungin was still required. Community nurses were due to us for 8am to do the dose prior to heading to London but when we didn’t have anyone knocking at our door by 8.30am (which was very very unusual) we knew something was up and that we would have to go to London without the iv and have it later. I started to worry that the day wasn’t going to plan, it felt like a less than positive start to this important day but the journey to London was easy and we began to relax.
London looked festive. Herbie enjoyed the tree and lights in Brunswick Square and we reminisced about our time in transplant and the warm summer days spent walking there. What a contrast.
We arrived in time to get our scans , Herbie had the usual obs and all were good (his weight continues to increase… those steroids!!)
First he had the CT scan. We’ve really had too many of these this year, in fact we were told no more for a year back in June but hey ho!
Herbie took it all his in stride. The scan was over quickly and then we raced up to see Waseem who confirmed that if the scan looked the same or improved the iv would stop but that he couldn’t let us know until the following week after the reports were in.
We then had a dexa scan to check bone density (long term steroid use effects this) and a lung function test. The lung function test results were fed back immediately…best yet! We were thrilled as he’s in the 90%+ range.
A quick visit to the Lagoon to grab food and we bumped into Holly, one of our lovely Robin Ward nurses from transplant. We were so pleased to see her. Herbie had a quick look at the Christmas display and we wrote a message for those still in hospital and posted it.
Then it was time to head home. I felt that the next few days would be so tricky as we waited for news from the CT. We prepared ourselves for Waseem to say that we needed to continue with the iv. It may not seem such a big deal but if the iv could stop that meant no more daily community nurse visits and this meant more freedom and also we wouldn’t have a repeat of last Christmas which was dominated by illness and nurse visits.
The following day I noticed a missed call from Ele, one of our community nurses. I called her back and she asked if I had heard the news? I hadn’t ! The scans were much improved and the iv was stopped! I was so so happy and Herbie punched the air and shouted YES! when Ele told him. Almost a year since the iv’s began he was finally finished with them. It was music to my ears. We went straight out, because we could!
The following day we had a call from GOSH to confirm that we had heard the news and to give more info on the scans. The CT showed overall improvements which was great but then we were advised that the DEXA scan had shown that his spine was a little fragile from long term steroid use and that he would need some iv therapy for that. I was shocked as I think the DEXA scan was the one I literally hadn’t worried about! We hoped that it would be arranged so that we could administer at the JR rather than GOSH as the loading dose was to be given over three consecutive days.
Thankfully there wasn’t time to dwell on it as Herbie had an important job to do. He was playing Angel Gabriel in the school Nativity. Last year he missed his first Nativity as he was so unwell. This year his teachers had discussed with me early on that they would like him to be Angel Gabriel by Skype if he was unable to be there. Waseem had told us that he could take part it in if all was ok at school and so we went ahead. Herbie loved everything about it, being reunited with classmates, dressing up, being on stage and all of the whoops and cheers he was given. “This is the best thing that has happened to me all year ” he said.
It was emotional watching him on the stage, beaming from ear to ear , speaking his lines so clearly and faultlessly. We couldn’t have been prouder.
Today we had our annual family Secret Santa party. This was again a time for reflection as last year we knew that the following day Herbie was to have a lung biopsy. He was due to spend three days in hospital but ended up being in almost until Christmas Day. He also spiked a temperature at last years party and needed to go home. This year he had a ball , dressed as Olaf the snowman (his secret Santa gift) we were able to see our boy and his siblings and cousins start their Christmas countdown.
So I will sign off now with 10 days until Christmas and 2 days until Herbie is 7 months post transplant.
I will post again hopefully before the big day. Fingers crossed that the news continues to stay positive. We are now totally off MMF and the steroids are being weaned to (6mls twice daily) . His bloods, although hit rather hard after the virus a few weeks back, are recovering
hope you are all feeling festive!