Wow! Look at that number above. It’s shocking how close we are to a year post transplant and that I’m still writing this blog!
Since the last update we have had a few issues to deal with. I blogged previously about the tummy upset and recovery but you may recall my last comment (in parentheses ). Well we headed to Easter optimistic of a healthy and happy time but those of you that have followed this journey from the start will know that our boy isn’t keen on the direct route (like his father) and prefers a scenic , often longer and more winding one!
So basically the upset tummy continued with very little desire to eat and intermittent tummy pain with some sickness. No real pattern, no fever and no other symptoms to get a grip on. I began to worry that a GVHD diagnosis was likely. Herbie was losing weight too. This was a double edged sword. He’s clearly been over weight for a while due to steroid induced munching but as the steroids halved his constant hunger diminished and his weight dropped. When he started the BMT last May he was around 18 kg, he has been as high as 27kg. This effects his blood pressure (he’s still on amlodipine daily to reduce his BP) and his fitness levels.
The first week of Easter break started and involved a lot of chocolate. The other three munched their way merrily through tons of the stuff but Herbie still has his in his room untouched. We had the family Easter egg hunt at Dan’s parents house , Herbie dressed as a sheep to collect his eggs ( why not?) and managed to collect a lot. He smelt the pizza and cakes that were put out for the tea party but was not able to eat anything bar a sausage roll. He had fun though and was full of energy and loved seeing his cousins as always.
Before Herbie & Lily were initially ill with their mycobacterial infections we spent lots of weekends walking in and exploring the woods around where we live. With Lily initially not being able to walk far and then Herbie it’s been some time since we have visited our favourite haunts. Dan decided to take the girls and Rufus for a walk in the Wychwood Forest. Immediately there was protest from Herbie! He was absolutely sure that he wanted to go and he was so enthusiastic that how could we say no? It was decided that we would all go and that Herbie could walk a little bit and then we would sit in the car (Lily too if she wanted to) until the others got back.
When we arrived at the gate where we would start our walk I suddenly remembered that it was quite an uphill walk to get to our favourite spot and that day it was particularly muddy so I knew it would be tough going.
We set off with lots of chatter and excitement but after a few minutes Herbie started to huff and puff and I realised that we would be back in the car sooner than I had anticipated!
I was so wrong! That boy has such stamina and determination. Yes he got tired, yes he walked slowly and yes it was tough going but he did it and we made it to the flatter part of the walk (with photo opportunities on the way!)
He did need to sit for a bit to catch his breath and have a drink. Then we walked on to the rope swing clearing.
Once there he even got to have a little swing! We had such a lovely time! Dan had to give him a piggy back to go back to the car but he did brilliantly. He was absolutely shattered when we got home but we definitely caught a glimpse of our pre transplant life.
Although these positive things were happening Herbie still wasn’t eating much and continued to have diahorrea and we spent most evenings wondering what was going on. On the first two weekdays in the Easter break Herbie had his gammaplex and Pamidronate infusions for his immunoglobulin therapy and bone density. These infusions through his Hickman line take hours and end up taking most of the day. Despite an early start at the JR It was almost two hours before the infusion started and when the boys (Dan & Herb) returned home they were tired and grumpy. On a positive note though Dan bumped into Dr Kelly , who we haven’t seen for a while, and he came to see Herbie on Day Care and chatted to Dan. He’s such a caring doctor. Herbie’s weight was down again but so was his BP which was great.
The rest of the week was relaxed and Herbie seemed to be vomiting less but the pain in his tummy was requiring calpol at least once a day and he was waking to go the loo during the night even more frequently. The week ended with much excitement as the GOSH publicity department announced on their website that the third series of Great Ormond Street would kick off on April 28th at 9pm on BBC 2! So exciting as Herbie features in episode 1. The excitement was short lived though as within days the schedulers changed the air date .
Then on Wednesday we headed to London to see Waseem with Herb and Lily after a particularly bad night with Herb who was up loads in the night with tummy pain. On arrival in London he promptly threw up in the car park and announced he felt better! We headed to GOSH feeling slightly anxious.
Waseem was joined by one of our BMT nurses Hayley. It was so lovely to see her. She was one of the loveliest nurses , always willing to listen and take time with us during night shifts.
Waseem seemed pleased with Lily’s progress and agreed to temporarily stop her immunoglobulin replacement therapy during the summer with a view to restarting in Autumn. He showed Lily her recent CT scan images and explained them to us. Her lungs are still very abnormal but there was some improvement. As her lung function continues to improve he is reluctant to stop any of the other meds as she still has cavities in her lungs which bugs would love. We discussed Herb and everything that had happened since our last visit, including the small lymph that was up just where he had it drained last year. It was decided to leave meds as they were right now. Waseem said it was difficult to tease out whether the symptoms were gut GVHD or down to immune reconstitution and the burden of micabacterial infection remnants. He didn’t seem overly concerned apart from the weight loss as he now weighed 25.9kg. It was agreed to monitor and if there was no improvement in two weeks or more weight loss he may need to organise an endoscopy to rule out or confirm GVHD. He explained that he didn’t want to increase the steroid (the usual GVHD treatment) because of bone density issues and also it suppresses the immune reconstitution again.
We headed to the outpatients ward on Safari for Lily to have bloods and bumped into Amy, another of his BMT nurses, and had a lovely catch up. Again, she was soo lovely during transplant & she also nursed Lily in Robin back in 2013.
Before we left we met with Cassandra and Rachel from the GOSH publicity team and Ash the photographer. We had publicity shots done and chatted to them all. Three lovely people who even got the kids a gift bless them! The whole programme thing is becoming more real!
We left feeling hopeful that Herb’s tummy thing was an immune issue and would resolve itself. That was the last time to date that Herb vomited and although the tummy pain seemed to increase over a couple of days and the restless nights too, suddenly, just as quickly as it started , it just stopped. Last week Herb announced on Wednesday (a week after the appointment) that he wanted breakfast for the first time in about 4 weeks. He’s now eating and drinking more, no diahorrea and his energy levels are up and no calpol has been needed for almost a week. We are beginning to think Waseem’s hunch about immune reconstitution was correct. (thankfully!) On Friday his teacher met me to say ‘she thought he was in fine form!’
As I type this we are heading into a new week and one that will bring back a few memories. I will blog about that nearer the time. However one milestone, other than 11 months post transplant, which we hit this week was the anniversary of the Rays of Sunshine wish from last year . Some of you will remember he had a wooden ‘treehouse ‘ .
Here he is on it a year ago pre transplant…
and yesterday, 11 months post transplant
He he still has some way to go to get his hair back to the longer length but he’s on his way. This milestone really made me stop and take stock of how far we have come. In many ways this year has gone by in a blink of an eye. I was thinking of two people as I wrote this…
Angela D, who may not even read this, but who was my BMT lifeline this time last year. She had been there, done it and got the t shirt and her words often consoled me on days when my brain struggled to process all of the BMT info being thrown at me. She once said to me
” I know exactly how you feel…everything runs smoothly then all of a sudden something sends you on a different path. It’s not easy but remember other children have experienced this before. Put your trust in the doctors”
I have always done that, I have always trusted them and will continue to do so. Thank you Angela for your friendship (and happy birthday!)
.The second person is Sharon. Her son and daughter both need a BMT and she will be heading to GOSH with her son in June to start. She is in the same place that I was last year but I want her to take comfort that Angela was right, Herbie & I have experienced what her and Zak will and next year Sharon you will be wondering how you can already be close to celebrating a year post transplant. Stay strong people.
Finally, what a lovely Easter surprise Herb had in the post from the lovely Hope. A card , letter and gift! Thank you Hope. Herb says he hopes you had lots of chocolate at Easter and he loved hearing from you again!
So time to sleep. I have no doubt tomorrow will be full of yogurt, chocolate milk, prawn cocktail crisps and Skylanders after school for Herbie as usual! He’s getting there, now if I could just get him to eat his flipping Easter chocolate it might stop calling to me from his room!