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Sue and Trevor

Sue shares her feelings about her husband Trevor’s diagnosis with follicular lymphoma at 42 and his autologous stem cell transplant. This story also includes a film about Trevor's experience of hair loss

Sue and Trevor on holiday with their family

‘A stem cell transplant is a tough thing for a patient to go through, but it is also a difficult time for their family. This is the story of how my two children, 8-year-old Aishling and 4-year-old Kieran, and I coped with their Dad’s transplant.

My husband, Trevor, was diagnosed with follicular lymphoma about 3 years ago at the age of 42. He was treated with R-CHOP chemotherapy and then received bedamustine after he relapsed. When he relapsed again it became clear that a stem cell transplant was something we were probably going to have to go through.

After much discussion and deliberation, we decided to go for an autologous stem cell transplant using his own stem cells. R-ICE chemotherapy was used to enable a stem cell harvest, and we were then all set for the transplant.

Getting the call

We had talked with the doctors about a mid-May date for the transplant, so were enjoying a few weeks of being off chemo, with Trevor feeling relatively well. He was relaxed and healthy, running, cycling, taking the children swimming and enjoying some quality family time. Then out of the blue we received a call from the hospital to say somebody had delayed their transplant, so could he fill their place and come in tomorrow to start his.

After the emotional rollercoaster we’d been on for the last two and a half years, we both felt like we were pretty tough and battle-hardened. But that phone call threw us both into a state of panic. We knew it was coming, but not yet. Not tomorrow! I felt the same way I had when I first found out that Trevor had lymphoma. All the raw emotion and feelings of dread that I had learnt to control were well and truly back. We weren’t prepared and the children definitely weren’t ready.

After the initial shock, though, we talked it through and decided to go ahead with it. We would probably have felt the same whenever it was scheduled for, so thought it would be better to just get on with it and come out the other side. We managed to negotiate a couple of extra days before it started and he went into hospital on Thursday 1 May 2014.

Going into hospital

The children didn’t think twice about Trevor’s many trips to hospital, although they were used to him coming home at the end of the day. Aishling had become an expert in blood cells and her Dad’s treatment and was happy to explain it to anybody who would listen. Kieran had spent most of his life with his Dad coping with lymphoma and chemotherapy and was very accepting that Dad had to go to the doctors a lot.

They both knew that Trevor would be in hospital for a month, so they came with us when he was admitted to the ward. They were most excited that his bed could be moved in all directions using the buttons on a controller. Lucky Dad to be in hospital with such a fun bed! They both seemed quite calm and relaxed when we left him, although Kieran had no concept of what a month, four weeks or 30 days meant, so didn’t really understand what was going on or how long his Dad would be in hospital.

The lead-up to the transplant

The first week of the transplant process seemed to consist mainly of a stream of drugs being pumped into Trevor. It was a grim experience for him, but also a difficult thing to watch happening. The drugs seemed to be sapping the energy and life out of him. He was allowed home for a couple of hours the first weekend, but he was so tired that he just slept the entire time - and then we had to take him back to the hospital again. That was really tough on the children, as they had to take him back and leave him all over again.

Aishling seemed to cope really well and accept that Daddy was in hospital and would be home in a few weeks. Kieran on the other hand found it very difficult. He became very clingy and emotional and would cry every morning when I left him at pre-school. He would draw pictures to take into Dad that were full of lightning and scary things. He would refuse to say goodbye when we left the hospital as he didn’t want his Dad to stay there.

One night when I was putting him to bed, after we’d taken Trevor back to the hospital, he told me he didn’t want Dad to die. It almost broke my heart that my beautiful little four-year-old boy was thinking about death. I don’t know where he heard it from as we were very careful to be positive around him, but he was obviously very stressed and upset. I felt very sad and alone that night.

Visits with the children were becoming more difficult for Trevor to cope with. Even when they were on their best behavior, I could see their noise and energy was too much for him, so we would only stay for about 10 minutes. After the weekend and the Bank Holiday Monday, the children were back at school, so we kept their visits to the weekends and got them back into a more normal routine. I would visit for a couple of hours every morning, then leave to do the school pick-ups and all the other stuff that I usually had to do.

That first week was difficult for everybody. All of our routines were turned upside down. Trevor had to go through the ordeal and had nothing to do but watch television or stare at the ceiling. He wondered a lot about what the brown spot on the ceiling above his bed was, speculating it was gravy, blood or who-knows-what hidden up there. I was running around all over the place trying to do everything I usually did, plus fit in two hours a day at the hospital with Trevor.

We were all a bit lost that week and things seemed pretty desperate. However, eventually we all seemed to adjust and settle into the new routine. The children seemed to cope much better only seeing Trevor at the weekends and then they would Skype him every day from home. I stopped trying to do everything and only did the really essential stuff. Trevor got used to the hospital routine and seemed to stop worrying about the brown spot on the ceiling. By week 2 we were definitely getting the hang of it all.

Transplant day

Transplant day was on Thursday 8 May and there seemed to be buzz of excitement. The BEAM chemotherapy was finished at last, which was a massive relief and now we could move onto the good stuff. Trevor’s stem cells would be put back in through his central line, then we’d just have to wait to see whether it had worked. When the team from the National Blood Centre arrived, they wheeled in a metal barrel containing the stem cells in liquid nitrogen.

Trevor was given drugs to stop any allergic reaction to the preservative that was in the bag with the stem cells, but unfortunately he still had a reaction to this and felt faint and sick. I leapt into action and tried to raise the foot end of his bed. Not as familiar with the bed controls as the children, I ended up moving the bed and him into every position except the one he wanted to be in. In the end the consultant just grabbed his legs and held them up in the air for him until he felt better. With that over, they got on with the actual transplant.

Trevor had nine bags of cells altogether and it was quite a performance. One person would open the drum (at which point a cloud of steam would appear) and pull out a frozen bag of cells that looked a lot like a slice of frozen smoked salmon. They would defrost it in a water bath for a few minutes then hand it over to a nurse.

After confirming Trevor’s name and date of birth and checking it against the information on the bag, it could be hung up on the drip stand. Then the first person would start defrosting the next bag. After each bag they would all have to change their gloves. A third person did regular observations to check for any reactions. All went well and the stem cells were in. Another milestone ticked off and another huge relief.

Neutropenic week

Week 2 was neutropenic week. Trevor’s blood count was low by Saturday, which was sooner than expected. I took the children to visit as nobody had any coughs or colds and told them they had to be on best behavior - no jumping on the bed and try not to touch anything - as this was the time we had to be extra careful about germs. When we got there, Kieran found the packet of Jelly Babies that were there to entice Trevor to eat. He ate a mouthful of them and then sneezed all over Trevor’s bed. There were bits of Jelly Baby everywhere, but more importantly Trevor’s nice clean sanitized space was now covered in Jelly Babies. Trevor’s face told me it was time for us to leave.

The rest of week 2 was really spent coping with the side effects of the drugs. Sickness became an issue and Trevor had developed an unwillingness to have any more intravenous drugs. In the end they controlled the sickness using a pump that continuously delivered a small amount of a drug under the skin. We were expecting the side effects to be much worse. He didn’t get the sore mouth he was anticipating and only got a slight temperature, not the raging infections he could have had. He had a bad enough time of it, but it could have been worse.

Feeling brighter

Week 3 and the blood counts had already started to rise very slightly. It was sunny outside and sunny inside the room. The doctor said he might be able to go home at the end of the week and he was definitely starting to feel brighter. Things appeared to be on the way up. The side effects were disappearing and Trevor had started to allow some visitors in. The blood counts kept shooting up and on Wednesday (one day short of 3 weeks in hospital) the doctors said he could go home. We didn’t tell the children and surprised them when they got home from school.

They were both over the moon to see him home at last!

Coming home

Once he was home Trevor gradually got stronger and has enjoyed being out in the garden. Kieran has settled down and seems himself again, although he has a bit of a fixation with germs and washes his hands a lot! Aishling has just carried on as usual. I’m so glad to have Trevor home and we went on a summer holiday together on the Isle of Wight. Trevor will be starting to think about going back to work soon and everything is starting to look and feel good again.

We still have to wait and see what happens in the future and whether the lymphoma comes back, but for now it feels like we’ve all walked across burning coals and are on the other side.’

Watch Trevor’s film about hair loss after chemotherapy for lymphoma