We are almost at 6 months post transplant. Just 2 weeks to go. It’s quite amazing that time has gone so quickly! Herbie is also only 33 days away from his 200 days post transplant milestone. So where are we now?
Well this week has been half term. Initially Herbie was disappointed to learn that his outreach teachers wouldn’t be visiting and that we wouldn’t be going to The Hub.
On Thursday he spent an hour at the hub investigating flight and parachutes with Christine.
Term ended on another brilliant high for him with his teacher, Victoria, taking his finished story about tomato soup into his class at school so that they could hear it. Even more special, Victoria recorded it on the iPad and sent it to us to watch. Herbie was thrilled!
These special times have helped Herbie to feel part of a class that he hasn’t regularly attended for almost a year!
Having the other three home has been lovely but also highlighted our situation at times. Monday was Herbie’s immunoglobulin replacement therapy day and so Dan took him to allow me to take the others out.
Tuesday it was Lily’s turn to go to the JR! Her three month outpatient appointment with the ID team was very positive which was brilliant but another holiday day given up to the hospital.
Finally we had some hospital free days as Wednesday arrived. The problem is that with a community nurse visit at midday, lots of oral meds etc and children enjoying lie ins it’s hard to get out anywhere!
Herbie has remained well since my last blog post. He continues to look rather cushingoid in appearance due to the steroids but we know from Lily that as the steroids reduce his face will become less round and puffy. He has a lot more energy although his ipad and minecraft do take up quite a lot of his day, making him sofa based! His bloods remain quite good with high HB and platelets within range. Lymphocytes are attempting to increase but his immunosuppression will always stop them climbing too high.
Interestingly a wart that he had on the side of his foot prior to transplant, that disappeared after chemo,has recently returned and is huge! We were advised by GOS that this is just due to his immature immune system and not to treat it but I think we will show them on Wednesday as Herbie wants us to treat it.
On the Wednesday of half term the Fab Four headed around to grandma and grandpas to make a guy for the bonfire night celebrations on November 5th. They enjoyed creating the 2014 Guy and Herbie particularly enjoyed the change of scenery! Drinks and chocolate cake for refreshment and a few videos about The Gunpowder Plot (As Herb was intrigued by it all) and then we headed home.
The following day we decided to bite the bullet and take Herbie to the Hallowe’en Howl at Millets Farm. It’s pretty much all outside and we couldn’t go until later when the iv’s were finished anyway so we hoped it would quieter.
We had a lovely time and Herbie loved the freedom.
It was funny how Herbie worried about seeing other children, at one point a child coughed and even though Herb was no where near them he said “let’s go, I think it’s a bit dangerous here!’
His hair continues to come back. Photos always make it seem patchy but you get the idea!
Hallowe’en 2014 kicked off with a small mummy wondering around the house around 7 am! Herb was so excited that he was ‘up & at ’em’ early. The pumpkins were carved and then with the girls at a birthday party we headed off in the car to ‘trick or treat’ a couple of family and friends.
Herbie loved it! He also got to see his cousins Otis & Felix, Charlie , Jude, Esta, Issy & Martha which he loved!
Armed with a bucket of sweeties we headed home and an exhausted but happy little mummy settled down to sleep (and I don’t mean me!!)
Today Herbie got to see two of his cousins, Harry & Lola , and he was in his element! He’s missed getting together with his cousins.
So we still feel we are floating on the millpond. Things are calm for us right now. We had a small reduction of the ciclosporin as his levels were high and we have stopped the potassium supplements (although it’s possible we may need them again in the future).
Our thoughts tonight go out to fellow BMT friends who have been experiencing rougher waters. May their ponds become calm soon.
Signing off until next Wednesday! We go to GOS for an outpatients appointment with Waseem. Lily is coming too.
Bloods this week (for anyone still remotely interested!)