Keeping us guessing

GVHD is a pain. What more can I say? It’s frustrating that Herbie even had it during transplant but for it to flare again so many days post is annoying.
When we left our local hospital last week we hoped that the new steroid dose would wipe it out. Sadly this didn’t happen. The rash didn’t really get worse but it was still ‘active’ and itchy and red. Last time Herbie’s hands and feet were awful , this time they are completely clear! It’s quite strange. It’s also odd to think that the rash is the new cells attacking Herbie’s body as foreign!

Last Friday I called GOS to let them know that the rash wasn’t really improving. I was called back later to say that the Dr, Robert , wanted us to up the steroid again. We did that from the 6pm dose and went to bed that night feeling confident that in a few days we would see an improvement.

Herbie was able to manage the itching with Piriton only which was good but anyone who has ever had an uncontrollable itch will know how annoying it can be. He was quite snappy and short tempered at times.

His spirits were lifted by a parcel of beautifully wrapped gifts from Kate and her lovely boys.

Thank you Tom & Ed
Thank you Tom & Ed


Something for all 4 children and this for me! Thank you Kate & crew
Something for all 4 children and this for me! Thank you Kate & crew

The weekend was lovely and Herbie enjoyed his first jaunt out on his scooter since transplant. He was so happy to be out in the fresh air, unleashed!

The GVHD continued to just ‘be there’ over the weekend. Dan and I thought we were going mad as we scoured his skin for any indication that it was retreating! In all honesty we both managed to find patches of improvement over the weekend but we knew deep down that the huge improvement that we longed for was still ‘on the run’.

GVHD rash on his arm
GVHD rash on his arm

On Monday, T+115, Victoria returned for the first time since the start of May to teach Herbie at home. He was looking forward to it but sadly just before she arrived he started saying he felt cold and shivery. His temperature was 37.5, my heart sank. We thought we were heading back to the local. Wrapped up in a hoodie and with a towel over his legs , he managed a session with Victoria. It was lovely to feel like we might be back to our old regime, a step closer to our original one too.

Once the school work was done he came back to the sofa and curled up a little but over the next 30 minutes he asked for food, drink and suddenly he seemed back to normal! His temperature returned to 36.8 and an hour later he was 36.4 and running about being cheeky!

Wednesday, T+117, was clinic day at GOSH and a week since we left the local. IV’s and bloods were done prior to getting into the car and then we headed to London. Traffic jams in Oxford and London made us late and we arrived 20 minutes after our appointment. I’d called through and been told it wasn’t a problem.
It’s funny how memories flood back as soon as you walk through the main entrance of the hospital. Thankfully Herbie was in fine form, unlike the previous visit, and things went smoothly. The waiting room was absolutely heaving and with some familiar faces too.

Waiting in Safari outpatients at GOSH
Waiting in Safari outpatients at GOSH

It was lovely to see the gorgeous baby Jack, whose story I had followed through BMT from the end of last year,and his mum Vicki and dad Rob. (You can follow his continuing story on Jack’s Journey on Facebook). He is facing a second BMT x
Then there were other faces from our time in BMT and it was fab to catch up with Esther and her gorgeous boy Ben who came out of transplant a few weeks after us.
We were finally called in to see a doctor at 2.15pm (0ver two hours after we arrived!)
It was a new doctor which I find unnerving at this stage of the game. She explained that the GVHD was only a stage 1-2 which was much better than last time and looked like it was active but recovering. In discussions about the fevers they decided it may be a mild line infection so they will culture both lumens on his Hickman Line on three separate occasions next week in the hope of catching the bug. If it’s not a line infection it may be the GVHD flare or some kind of auto immune response that cause the fevers.
There didn’t appear to be much to be concerned about though and everything else, his bloods etc, were very good and we are now transferred back to the immunology department with Dr Wasim for our next appointment in four weeks. Amazing! No med changes until the GVHD is gone and then the MMF wean can continue.

Bloods were as follows
HB 101
WCC 4.44
Neutrophils 3.33
Lymphocytes 0.23
Platelets 120
Engraftment still 100%

Herbie was as good as gold all day and yesterday woke bright and early and had another good day, eating and drinking well (haven’t used an over night water bolus for weeks now) and being happy and cool!

Odd food requests, carrots, baked beans and roasties!
Odd food requests, carrots, baked beans and roasties!

He met his Thursday/Friday teacher and really liked her and a new community nurse who also was new and got the seal of approval!

More goodies arrived for Herb,this time from Emma, who herself is feeling pretty grotty right now . Get well soon Emma and thanks for the fab Moshi/Lego gifts.

So here we are just about to enter T+120…
What a long road we have travelled so far and yet it stretches out before me into a hazy autumnal mist, calling us forward but giving away very little about the road up ahead and what we may encounter. For now though I am grateful that we are on our10th consecutive night at home, long may it continue!

Messages from his School  ALWAYS raise a smile
Messages from his School ALWAYS raise a smile

3 thoughts on “Keeping us guessing”

  1. Great to see Herbie out on his scooter! The boys say Hi. That itchiness must just be the pits for Herbie. I don’t know whether ‘wet wrapping’ at night would be appropriate for that sort of rash but it gave Tom such relief when his eczema was so itchy and at its worst. Worth asking about maybe?
    Xx Kate

      1. Ah of course- I see Lily’s name on the back cover! Yes that’s Tom- he was well chuffed to be made into a cartoon!
        Its sounds like things are a little more settled for you guys at the moment- long may it continue! Xx

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