The last few days have been very busy. Days 87 & 88 were the new pattern of sleeping at the JR and leaving as soon as possible in the morning after the dose of TAZ. Herbie has been on great form and full of energy. During his time at home we have seen him dressing up, like he used to, in his fox outfit for renditions of “what does the fox say?”
He was actually ok about returning to room 5 of BHD every night. He was often greeted by notes from the play specialists.
He enjoyed these and I guess he’s really enjoyed the attention from the nurses, doctors and play specialists. He’s enjoyed watching his DVD’s and having one of his parents giving him their undivided attention. However, it’s not all great, he’s missed his siblings, evenings on the sofa singing and dancing and laughing. He tried to recreate it with the nurses and showed them his dancing and singing. His energy levels have been great and his laughter infectious!
T+88 was much like the previous days apart from whilst our nurse Maz was busy giving Herb his TAZ the doctor, Ralph , arrived to check him over. He seemed very pleased with him and said his bloods were looking good and CRP was now 7. He would be talking to Professor Pollard about when Herbie could go home. I returned home feeling optimistic. Hopefully not much longer in hospital. as usual the day passed by very quickly and before I knew it Herbie was returning to Room 5 and his Park view.
Dan was going back with him for the night and I dropped them before returning home. As I was driving back my phone rang. It was Dan (don’t worry I was hands free obviously!) he called to say that one of the ID team, Dr Manesh, had popped in. Only that day we had been talking about how we hadn’t seen him for ages. Dan told me that he was pleased with Herbie’s blood results and that things were good. I could tell Dan was keeping something though, good news before bad? My instincts were correct…Professor Pollard wanted Herbie to do 2 weeks of TAZ to be on the safe side which meant this part time hospital thing would continue until next Monday! (Almost another week). I can’t begin to explain how angry and disappointed I felt. The summer holidays were supposed to be our family time after the 9 weeks at GOS but we had spent most of it in the JR. I felt like this was crippling us more than the actual transplant. I admit I went home and called Dan again to vent my anger. The tough thing is that we know and trust Professor Pollard, we assumed that this had all been done in consultation with our BMT team, who are ultimately our care team for the 6 months post transplant, and realised we would just have to get on with it!
T+89 : Our trip to GOS for our second outpatient appointment was today. I collected Herbie and Dan from the JR at 9.30am and we headed to London. I was quite excited about the appointment as Herbie seemed well & I hoped they would feel the same. We arrived with time to spare and ate lunch in the park by the hospital that we had spent so many hours in during the transplant.
Then it was off to GOS to book in & wait for ultrasound. This is one of Herbie’s least favourite things but we reassured him it would only be a quick one this time as he’d had two at Oxford already.
I should have learnt by now not to make promises. The ultrasound was a full abdominal one , it took a while and although he was unhappy he contained his frustration. “All done” the doctor said and Herbie started to wipe the jelly off. The dr went off and returned just as Herbie put his T-shirt back on and dropped down from the bed ,announcing he needed more pictures! This was enough to send Herbie into a rage. He refused to get back on the bed or remove his tshirt and he really kicked off. Dan lifted him onto the bed and he was kicked! I seriously have NEVER seen Herbie this upset. After the ultrasound he was not calmed down either.
The tantrum got worse and all the way to Safari Outpatients on level 9, including the time in the lift, Herbie was lashing out and shouting. It really was something I have never witnessed before.
Once in the outpatients waiting room it continued, he refused to co operate with obs, his heart rate registered 165 and he was asked to calm down as this is not good for him. The lovely HCA realised he was fighting a losing battle and told us to go back out and sit down. He’d try again when he was calm. However the calm didn’t arrive. Dan was the target of the abuse and left the waiting room in an attempt to help him calm down. A nurse arrived to take blood, she also mentioned an NPA, which I advised her was his least favourite thing and would not calm him but make him worse!
She got the blood and much to my annoyance and dismay the other admin staff there thrust 3 (yes 3!) questionnaires in front of my regarding my experience today to complete! Herbie got a stitch from all of the yelling, he was in pain and very upset. Juliet & Sebastien, two BMT buddies were there for their appointment but before we could chat properly Dr Robert, one of our favourite BMT specialist doctors, came out to call us for consultation. He was kind and calm with Herbie , offering him the bed in the consultation room to rest on. Finally Herbie calmed down and fell asleep.
The appointment went really well. He’s very pleased with how quickly the haemorraghic cystitis cleared as apparently it can be long and painful (although not dangerous). His bloods looked good previously and immunity was getting better. Last time we were there the engraftment bloods showed he is still 100% engrafted with Ru’s cells! It’s time to wean off of the steroids and MMF, both suppressants of the immune system. Yippee, a plan was made. He asked why we were still in our local, we explained the decision made by prof Pollard. He said there was no need for the TAZ to continue & we could go straight home!
We had to go home via the JR for the iv’s and whilst there we had a call from Netty , one of the BMT clinical nurse specialists, confirming the TAZ could stop. Maz came to tell us they had had the call too. The doctors were not happy that GOS had over ridden their decision but we decided to let them fight that one out. Herbie was thrilled to be finally going home.
We waited for Dan to get the car,
Finally we were home. It’s time to get some relaxation now. Herbie’s fluid target is reduced to 1600ml & things are looking positive but wow, what a headache Dan and I suffered that night!
This BMT malarkey sure is exhausting!