Amie was diagnosed with acute myeloid leukaemia (AML) in 2016 when she was 28 years old, and 28 weeks pregnant. She spoke to Caroline in Patient Services about going through treatment before and after giving birth to her son, Jack.
Can you tell me a bit about when you were first diagnosed?
I had a regular appointment with my midwife at 28 weeks, and the next day was asked to go back to hospital as something had come up in my blood tests. They thought I had leukaemia, so we immediately met with different doctors to decide what was best for me and the baby. I started chemotherapy the following week. It was just such a huge shock as I didn’t feel unwell and had no symptoms.
Was a stem cell transplant mentioned as a potential treatment option at this time?
In the beginning, there was just hope that chemotherapy would be enough. I was told I would have four courses of chemotherapy and then hopefully be in remission. I’d met people on the ward who’d had stem cell transplants, so I knew that would be an option further down the line if I needed it.
Were the implications of treatment while pregnant explained to you?
Yes, but there’s not a lot of data on it. They couldn’t tell me if it would affect the baby, but said it was my best option. I was diagnosed when the baby was still very small – they wouldn’t have advised me delivering at 28 weeks. I needed to get better and for the baby to keep growing.
Did you do anything to help you cope emotionally in the run up to giving birth?
From the week I was diagnosed until after the birth, I didn’t come out of hospital. I had a lot of support from the medical staff who were very understanding. The care was excellent. My husband, Jamie, was brilliant and luckily his company allowed him to take six months off, so he was with me every single day – I couldn’t have done it without him.
I delivered Jack at 33 weeks. It sounds strange but I think being pregnant helped because it gave me a focus. I didn’t think about myself. If I had to go through it again, I wouldn’t want to be pregnant, but it wasn’t about me. I was just concerned about the baby.
Were you offered any psychological support?
I was offered counselling but I don’t feel like I need it at the moment thanks to having a great support system around me. But I know it’s there if I need it.
You had three rounds of chemotherapy after giving birth. How did you get through this with a young baby?
Jack spent a month in hospital because he was so small. I was getting treatment at a different hospital, so leaving him in an incubator was the hardest part.
We came up with a system so that Jack was never on his own. When my husband was down visiting me during my chemo, a family member would be with him. That rota helped.
The local hospital was also trialling a new system called BABI (Bonding After Birth Initiative). When I wanted to see Jack or speak to him, I would ring the ward and they would FaceTime me from the iPad and place it over the incubator. I could see him and he could hear my voice, and they would just leave it on for as long as I wanted. I would just look at him for an hour and see he was ok.
We had little teddies, too. Jack would have one in his incubator and I would have another. Every time my husband came down, he’d swap them for us so we’d smell of each other. I was worried Jack would forget who I was.
Finding out you had relapsed a year later while Jack was still so young must have been exceptionally difficult. Can you tell me a bit about this time?
When I relapsed, my consultant said that a stem cell transplant was the route they were going to go down. My two brothers were tested and they weren’t a match. I thought my brothers would be the best match possible so I thought, ‘How can someone else be?’
I didn’t have the go-ahead for the transplant until two months after I relapsed. It was such a relief. My transplant was in May 2018 and I was then in isolation for four weeks.
How did you cope with the isolation period and being apart from Jack?
Under 12s weren’t allowed on the haematology ward so I didn’t see him for five weeks. Jack would do colouring for me and Jamie would bring it in. Having the transplant felt like it was the light at the end of the tunnel, so I just wanted to get it done and go home. I was doing it for Jack, he was my motivation.
What advice would you give others going through a stem cell transplant with a young baby?
Try and be positive. It’s incredibly hard and you’ll have bad days, but I think overall you must try and get up and carry on. People deal with things differently but having a positive mindset does help.
I met one woman who was pregnant when diagnosed, like me. She asked how I got through it, and I said you need to focus on your baby. The ‘normal’ side of your pregnancy gets taken away from you – I missed my baby shower because of treatment. So envision spending time with your baby when you’re home. That will take your mind off everything else that’s going on.
Jack’s 2½ years old now and a little whirlwind! He’s very healthy with no complications, so we’re lucky.
It’s been nine months since your transplant. How has your recovery been?
I knew having a transplant would be hard, but I never thought it would be this hard. The recovery is long and I’m still not 100%.
I suffered badly with sickness and fatigue. I couldn’t walk – standing up was really hard because I had no strength in my legs. I had difficulty eating and lost a lot of weight. I’ve been seeing physios and dietitians and take every day as it comes. You don’t see it at the time but looking back, I didn’t think I’d get to this point where I feel ok and I’m able to walk. You do get there.
It’s been hard having a toddler, but everyone’s got their own things to deal with. If I didn’t have him, I would probably just lay in bed all day. It’s that focus that gets me through. It’s about him, not me or my husband.
When I get to my one-year anniversary in May, I’m going to send my donor an anonymous thank you card. I’d understand if she didn’t respond but I owe her everything. I’m more than grateful.