Once Leah had moved to the Adolescent Ward in Bristol we had several visitors. Each and every one was so precious to us.
A retired couple from our church in N.I. were holidaying nearby and came to see us. We were so excited to see them. They brought us some lovely gifts too – a craft kit for Leah and some delicious Millie’s Cookies. I have a particular fondness for Millie’s Cookies. Leah made this lovely card using the craft kit and sent it to our church congregation:
Horace and Miriam came for four days at the end of August and this was a very joyful reunion. While they were visiting, my sister came up from London and took me out for lunch to a delicious Asian restaurant called Tampopo.
Leah was allowed out to SAMs House for a few hours each of the days that Horace and Miriam were there. Her and Miriam had great fun together. Things were definitely looking up.
Then on Thursday evening 29th August ’13 Leah started to feel unwell. By Sunday she had severe bone pain, a raised temperature, a raised neutrophil count, a raised CRP and an extensive skin rash.
A provisional diagnosis of graft vs host disease was made. She was commenced on intravenous steroids (prednisolone) at a rate of 1mg per kg of body weight.
My heart sank.
I understood that a certain amount of GVHD was beneficial in preventing her myelodysplasia from relapsing – the so called ‘graft vs leukaemia effect’ but I also knew that high dose steroids could potentially have horrendous side effects.
Leah’s symptoms quickly came under control with the IV steroids. On Monday 2nd September my eldest daughter Rachel arrived to visit us. I was very excited about this, as I hadn’t seen her since the end of June. She had been in America working on a Goat Farm as part of her University Course.
Leah didn’t like being left alone in the hospital for any significant period of time but I explained to her that while Rachel was over I wanted some time to show Rachel around Bristol – well the little bits that we could walk to anyway. Rachel was impressed with what she saw of Bristol and seemed to like it as much as me.
On her first full day there, she and I ate in Za Za Bazaar – it is the most amazing place to eat in – definitely not to be missed.
The second day Rachel chose where we would eat and she wanted somewhere that served homemade pastry pies. She made me walk for what seemed like forever, to find this little pie cafe, up a side street, well away from the main thoroughfare. It was quirky but nice.
We also managed a trip to Nando’s which is a firm favourite of Rachel and I.
In the evenings Leah was allowed off the ward for a couple of hours. It was warm and the streets were deserted so we walked through the pedestrian parts of Bristol town and did some Gromiteering – this being the number one pastime in Bristol in the Summer of 2013.
The Gromits were going to auction mid September to raise funds for Bristol Children’s Hospital as part of Gromit Unleashed. Leah was very excited to get to see some of them before they were gathered up for display in The Greatest Dog Show on Earth in a former Habitat Store. People queued for up to six hours to get in to see the Gromit exhibits. Gromit mania was at fever pitch in Bristol while we were there!
Millie’s Cookies even had a giant Gromit cookie!
For Rachel’s last evening, the girls had planned a girlie night at SAMs House. Then word came through that Leah’s blood results weren’t good. She had to stay in hospital for a platelet transfusion and a blood transfusion. This was really disappointing.
However we got permission from the ward staff to order in a Domino’s Pizza and the girls had a pizza and movie night in Leah’s hospital room. Leah was on a “clean diet” because of her immunosuppression, and should not have been eating takeaway food, but it comes down to that age old dilemma of balancing quality of life with medical restrictions. I tried to choose pizza toppings with the least possible risk of food poisoning. While waiting for our takeaway to arrive, I managed to beat Rachel at a game of air hockey 10/9! We had such a laugh in the process.
The next day Leah and I walked Rachel to the bus depot and encountered a TGIF’s promotional trailer. Leah couldn’t go in due to her immunosuppression but they whisked Rachel away.
After this it was another sad goodbye for us and back to our hospital room.
The next day Leah’s GVHD symptoms started to escalate again. A skin biopsy was subsequently performed to confirm the diagnosis.
Cutaneous GVHD was confirmed and graded as 2/3 in severity. The BMT consultants met to discuss her treatment. Leah’s steroids (prednisolone) were increased to a dose of 2mg/kg body weight, along with another immunosuppressant called MMF (mycophenolate mofetil) as well as weekly methotrexate. My heart sank even further.
Our consultant told us that we had to live in “self imposed exile“. He also said that “one chance encounter with a snotty nosed kid could prove fatal“. I had friends in Bristol who invited us out to their houses but we couldn’t accept these invitations. From now on it was Leah’s hospital room, or SAMs House and nowhere else – Leah was severely immunosuppressed.
I had to be so careful to protect Leah from the risk of infection.
We became obsessed with washing our hands and using alcohol gel. Leah used to watch me like a hawk and accuse me – nicely of course – of not washing my hands after I had touched something outside of her room. I would indignantly defend myself saying “I did wash my hands, but you weren’t watching! I will wash them again though if it makes you feel better.”
It was how we had to live.
It was our new normal.