Up, down and all around


So I’ m sure that  it’s been way too long since I lasted posted and for those of you who don’t actually see me regularly or know what has been happening I’m sorry for the lack of communication.

From November 2014 to a few weeks ago we have had a wonderfully settled period post transplant and I  (probably naively) thought the corner was well and truly turned and that Herbie was over  ‘the worst’.

Our last GOSH appointment was 4 weeks ago and at that point we were weaning the prednisolone (steroid) down to 5mg  a day instead of 5mg twice a day and it had gone really well with no repeat performances of the yoyoing in and out of the JR like last time.  We discussed the next step with Waseem and he was keen to keep the steroid in place whilst we removed the ciclosporin (the other immune suppressant)  and so we  had a plan to leave the steroid at 5mg for one more week and then begin a wean of 0.05mls a week of ciclosporin. This would mean that on our return to GOSH in 6 weeks time Herbie would finally be ciclosporin free! I was so excited at this prospect. Finally his T cell reconstitution might actually get a boost. Waseem told us to watch Herbie’s skin closely for signs of GVHD but everyone was happy that it looked pretty fab right now and that his revoltingly large wart/verruca on his foot was completely gone without treatment.

It was funny to see Dr Johannes Truck from the JR in our GOSH appointment, it’s not the first time that our hospitals have merged and it’s great that they work so closely. Sadly Herbie was a tad rude (overfamiliar really ) and whilst doing his trademark pointing from eyes to Dr,he said ‘Don’t even think about it Truck!” Which although the Dr’s smirked sparked a reprimand from Dan & I, we were so embarrassed ! The positive appointment continued right to the end with Waseem sharing a joke with Herbie and Herbie telling him that he wanted to go to school for longer than an hour and a half each day! A plan was formulated.

Herbie returned to school the following day and stayed until lunch time, he was thrilled! He didn’t seem at all tired by the extra hours. He was able to participate in the Mother’s Day concert and although he had his gammaplex infusion on World Book Day he went to the hospital dressed as Shaun the Sheep!


Then two weeks ago he said his tummy hurt and he seemed to be eating less and less. Remember that this was the boy who literally was eating as soon as his eyes opened! Now he just couldn’t face food before 11.30-12! The drop in steroids seemed the likely culprit initially but then his stools started to be more frequent and looser and then he started being sick.  We held our breath. School reported a tummy bug in school so we assumed it was this. The sickness wasn’t much and after two episodes he managed 49 hours vomit free meaning he could return to school but we gave him an extra 24 hours to be safe. He returned to school and the following day was sick again.  Throughout this time  we had continued with the ciclosporin wean but suddenly I noticed that his last loose stools were green…this all pointed to gut GVHD. I called GOSH for advice. His temperature had been up but not above 37.9 so no automatic admission. Waseem advised we returned the ciclosporin to it’s original 0.35ml  dose and held the steroid at 5mg until our next appointment. Cultures were to be taken from the line if his temp went about 37.5.  Things settled quickly and we felt reassured by GOSH’s instruction. The symptoms settled quite quickly and all that I had left to concern me was that he appeared to be breathing quickly and getting breathless


Last Thursday Morag came to do a ciclosporin level and repeated bloods and did cultures as we were concerned about his breathing and despite the thermometer saying 37.2 he felt warm. We went to see the ID team at the JR for a once over for peace of mind. A thorough check up revealed nothing untoward and after a few swabs etc taken from his throat we were sent home with instructions to call if anything got worse. His bloods came back unremarkable , his CRP was 62 which, as the doctor pointed out, was one of the lowest CRP results they have ever had for Herbie!  The normal range is 0-5, so clearly something was going on. The plan was to repeat it on Monday to see if it was on it’s way up or down! All virology came back negative as did cultures.  As usual Herb keeps us guessing!

The weekend went well. Herbie began to show an interest in eating again, not loads but some! He was able to attend my uncle’s 80th birthday party and he danced and had a great time. He didn’t get to bed until midnight! Sunday was a lazy day for us all but Herb was able to eat a meal and things looked promising that we were on the mend x


Monday I kept him from school as his immunity was low and had taken a hit from whatever had been going on this past week. Our immunology nurse had said this was a good idea. He was very perky all day though  and I assumed he  would go back to school Tuesday or Wednesday. So this morning when he woke and I could tell he was warm I was so miserable ! Again he was 37.9 but never went over 38. He said his tummy and head hurt. After an hour he was 37.5 but his head still hurt so he had calpol and perked up no end, asking to visit my mum and dad for bacon sandwiches and hula hoops! He did eat the crisps and had a mouthful or two of bacon but the appetite is still very much subdued. His CRP came back at 10 from yesterday so on it’s way down. Perhaps his body is just struggling to kick this virus or maybe the GVHD is simmering?

The  good news is that we had his parent consultation at school and his teacher is pleased with his progress saying he’s not behind at all. She is thrilled that he is back and is only sad he can’t stay longer.  The feeling is mutual! He has loved being back , doing the normal things, making Mother’s Day cards and reading books and doing homework! Here is his Mother’s Day card!


So he will probably not return to school this week. There will be a two week Easter break and hopefully the viruses will be less, his immunity will improve and we can continue on to his 1st rebirth day on May 16th in a positive zone.

3 thoughts on “Up, down and all around”

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