Supanya’s daughter Lara was diagnosed with acute myeloid leukaemia (AML) when she was 24 years old. Due to Lara’s Thai-Italian heritage, she faced a ‘needle in a haystack’ search – only three per cent of the worldwide stem cell donor registers are mixed race, and Lara’s match was most likely to come from someone with a similar ethnic background to herself.
In a bid to widen the pool of potential donors, Lara’s family and friends launched a global #Match4Lara appeal, working with donor registries in the UK, Thailand, America, Italy and beyond to appeal for more people from mixed race and ethnic minority backgrounds to sign up.
To the family’s relief, a matching donor was found and as a result of their huge effort to diversify registers 50,000 new potential donors signed up across the world.
It’s been one and half years since Lara’s transplant, and Supanya spoke to Billie in Patient Services about her experiences as a mother, caring for a grown-up daughter after a stem cell transplant.
You’ve recently returned from your first family holiday since Lara had her transplant. How was that experience?
It was wonderful; really lovely for us to be back doing something as a family all together again. It was a hiking holiday, too, so it was a joy to see Lara enjoying activities that she used to do before her AML.
How did Lara’s diagnosis, search for a donor and recovery affect the dynamics in your family?
We have always been a very close family. But the search for a donor and subsequent taking care of her has brought us even closer.
Particularly, what really strikes me and makes me immensely proud is the relationship between Lara and her brother Seb.
There is a four-year difference between them, and seeing how he supported her and responded to the situation has been wonderful.
He also provides a balance for us, because we are her parents and I probably cluck over her as a result, but he is much more down to earth with her: ‘I know what you’ve been through, I can support you, but don’t play the cancer card with me because I’m your brother!’
What adaptations have you had to make as a family to adjust with Lara’s illness and recovery? Have roles changed?
Lara was living at home when she was diagnosed, but prior to that she was very independent and has lived abroad and away from us for some time. So she’s an adult, but when she got sick she came back under our roof to get better.
That is something we’ve all had to adjust to. For me it’s been about recognising that she is an adult, and for her to recognise that she’ll always be our child too, and getting that balance right.
Many mothers are protective of their children at any age, without the added distress of a life-threatening illness – how have you found the balance of caring and allowing Lara her independence in recovery?
Things changed with time, but initially there were some rules we wanted her to follow. I think it’s really important to know your child well; what they will naturally do themselves and what you as a parent need to remind them of.
For instance, Lara was very good at taking her medicine, but I felt that I needed to remind and encourage her around washing her hands and being aware of potential sources of infection. But it was important for me not to nag – I had to take a step back!
In the beginning I think making some decisions on her behalf was useful, as it took some of the pressure away from her.
An example was around visitors at the hospital, and later at home. Lara had many friends who wanted to come and see her and she would never, no matter how exhausted she was, turn people away. She would just perk up and welcome them.
So I had to make certain rules about how many people could come and for how long, and I was strict on hygiene with all of her friends. It’s an awkward conversation to have with your peers, so I just stepped in and did it for her.
Within your family, do you have different approaches to things? Have you found that helpful?
Yes – I tend to tackle things very head-on, whereas my husband is always very laid-back, and will do it in a roundabout way. Which I admit can be even more successful at times!
For example I will say, ‘She needs to do that now’ and he is more, ‘Let her process it, come to the conclusion herself.’ He communicates to her in a different way, and that seemed to work well.
Is there any advice or tips you might give to other parents or carers looking after a child who is an adult transplant recipient?
When you have a younger child, they just accept what you say, but when they are older more discussion is required. I think it’s important that you recognise that you are all facing a new situation and that you are all learning how to cope and so communication is key.
Just talk to them and be open about what affects them, but also how it affects you. Try and make decisions together. You will both need to compromise, as your perspectives are going to be very different.
What we found was useful was to actually use the professionals at the hospital as mediators.
For example, Lara wanted to go back to volunteering with refugees as it’s something she’s always done and she was adamant. We were so worried. and asked her doctors, who also said, ‘No, it’s too soon.’
I think it was easier for Lara to take it from a professional.
Another thing that was initially worrying for me was her boyfriend coming to stay soon after transplant but the clinical nurse specialist backed her up and I had to accept it.
Having her clinical nurse specialist as a mediator helped us to navigate these discussions as they came up, so I would encourage others to talk with the staff assigned to them.
It sounds like there was some push and pull about what Lara wanted to do and what you guys thought she was ready to do?
Yes, she recovered well and felt well. But the reality was she was still quite vulnerable. She wanted to travel and there were points where we had to say no, you aren’t ready.
It’s about managing risk. It was important to get across our point of view: ‘We aren’t stopping you from doing anything, but manage your risks.’
Can you think of an example where you helped her manage risks?
One example, during her long isolation period once back at home, was that she was desperate to eat at a restaurant.
So I called ahead and asked for a table as far away from other people as possible. We ate at the first sitting when the place had just opened, so it was clean and no one had sat there before us, and just let the restaurant know our circumstances.
In general, I am much more proactive than Lara with regards to her health. For instance, she had a Cdiff infection once before, and she came to me another time and said ‘I don’t feel well; my tummy feels strange.’
So I asked her to take a stool sample and her brother bicycled it in to UCLH, a real family effort! They tested it and found she did have Cdiff again. She was put straight on to antibiotics, and as a result of catching it early was able to avoid hospital admission.
Would that be some advice you might give other families, not to worry about seeming cautious?
Yes, but it’s a fine line. You as a parent don’t want to be neurotic, as you don’t want to pass that worry on to them.
But I think young people aren’t particularly proactive with their health. They worry about bothering the nurse too much, and in circumstances like that it’s good to step in and say ‘No, let’s find out.’
If it’s nothing, it’s nothing. I think transplant recipients in general worry about being a burden because the recovery time is long, but it really is better to raise things, so that they are treated quickly if need be.
Lara would have been very disappointed to have had to go back into hospital at that point so I think she recognised the value of mother’s pestering!
Did you/do you take time out for yourself?
I take time out for myself by walking our dog. I’m also lucky enough to have some great female friends who have been so supportive.
Because you do need it, whether it be a professional or a friend, someone that you can unload to from time to time. Someone who will listen and who isn’t a part of the immediate family is good.
Of course my husband and I talked about Lara, but it’s not the same as being able to talk openly about your fears when you’ve had a really bad day.
Did you always make time for you or has been something that has developed in Lara’s recovery?
I probably didn’t take the time when Lara was acutely ill.
We were at her bedside in turns. I think there was the odd day where I said, ‘I need to do something else other than this,’ and perhaps her cousin or a friend would come and sleep by her side.
What would you say to other parents/carers about time out for themselves?
They have to do it. One thing I maybe didn’t do enough was to call upon the support around us. I wanted to manage the situation a lot myself, but people really do want to help so you can let them by telling them exactly what you need. Being specific is helpful.
For example, Lara is vegetarian, and so I cooked all of her meals for her in hospital, but it didn’t have to be me who did it. I was a little bit reluctant to let anyone else do it! Especially when she was neutropenic – but actually if I had taught them how to do it, they would have been able to do it just as well. I would say it’s vital you find ways to accept help.
You also need time off with your partner; that was great when my sister took over and we had that opportunity. Stefano and I were able to have an evening out together, a meal just the two of us.
It’s a long period, a really long period. Until you’ve been through it, you don’t realise how long it is. And it’s still ongoing – she’s recovered remarkably well, but we recognise it’s a longer journey.
And yet we know we are incredibly lucky, as she has recovered very quickly compared to some.
Finally I just wanted to ask you about your volunteer work with Anthony Nolan – how’s that going?
It’s fabulous. I really enjoy it. I visit donors during their donations maybe once a week or every two weeks, work permitting.
For me it is a real privilege to meet donors. They seem to appreciate speaking to someone that’s been through it too. I always give them the opportunity to ask about what it is like for the patient.
I think donors know what happens, but don’t have a good grasp of what happens to the patient during their recovery.
Lara’s a year and a half post-transplant and she is well, but it’s a long road. I promise Lara every time when I go and see donors that I’m not going to blub over them, but I’m afraid I’ve never achieved that yet! It’s just such an incredible gift they are giving.
For more information about supporting family members through a stem cell transplant, visit our Anthony Nolan Patients & Families website.