Name: Em Sun
Children’s names and ages: Luke, 5
Diagnosis: PMBCL and then CNS relapse
Treatments: 6XEPOCH-R 4XMex/Cytarabine 20 rounds whole head radiation 32gy
Current status: No evidence of disease
Parenting with Cancer: What’s the first thing you thought of when you were diagnosed?
Em Sun: My California-based sister has to marry my husband because she’s the only one who can keep my memory alive for my son. That and there would be immigration problems if she doesn’t marry my husband. It would have been like a “Green Card” (a la Andi McDowell circa 1990 film) with cancer thrown into the plot.
PWC: How did you tell the kids you had cancer?
Em: My son was only three years-old at the time. I told him Mummy was very sick. My friend got me a book called “Mom Has Cancer.” I read that to him and he understood what was going on as the family in the book was a mirror of ours. Unfortunately, there was no “Mom Has Cancer – Again,” so we had to explain it to him the way it was explained to us: that the doctor didn’t get all the cancer the first time. It was hard because he linked hair regrowth to ongoing remission. That is why it was more traumatic losing my hair the second and third times. It really confused my kid.
“Unfortunately, there was no ‘Mom Has Cancer – Again,’ so we had to explain it to him the way it was explained to us: that the doctor didn’t get all the cancer the first time.”
PWC: What’s the best thing someone did for you or your family to help during cancer?
Em: My good friend Cathryn organized a roster for the mums at school to help me out with my son. We live a fair way from the treatment centre, so it was too much for my husband to drive back home as my treatment was continuous chemo as an inpatient. I was able to relax and know that each day my son had good care and the company of his friends.
PWC: What’s the best thing someone said to you when you had cancer?
Em: A friend said, “Anger hurts” and it does. I was so angry not only about relapsing, but of my relapse symptoms being dismissed by my first specialist. I was out for blood, but a friend simply said, “Anger hurts,” and I knew what she meant. It took away too much energy to feel that emotion and I needed every bit of it I could muster to get through second round chemo and 20 rounds of whole head radiation. Although, during radiation therapy, I filed a formal report against him with the health board and he is currently being investigated. Anger is part of the journey.
PWC: Wig, headscarf or bare-naked head?
Em: Cotton beanie! Wigs are fun, but itchy.
PWC: What’s been the hardest part about having cancer/cancer treatments?
Em: Being away from my child and not knowing if I would make it through the other end alive.
PWC: What has helped your son through this tough time?
Em: Family and friends from the school community. It was very important that my kid had a sense of normality and going to school gave him that.
“But some nights I wonder whether my kid is screwed up by my experience.”
PWC: What keeps you awake at night?
Em: Not much these days. After 2.5 years of treatment, relapse and more treatment, I’m too tired to stay awake at night. But some nights I wonder whether my kid is screwed up by my experience. He is constantly reassuring himself that we die by chronological age and is sometimes wise beyond his age. He knows that I nearly died twice and understands the permanence of death. Then again, this might be from his interest in bugs and dinosaurs. it’s hard to say. But I do experience a lot of mother’s guilt about missing out on so much of his life. He said to me, “Mum, you have been sick for all my life,” and 2.5 years is almost all his conscious life!
PWC: How do you feel when someone calls you an “inspiration”?
Em: I don’t feel that I am. I just did what I needed to do to stay alive, and I was very lucky I had an excellent doctor.
PWC: Where do you go for support in your darkest moments?
Em: Helplines. In Australia we have the Cancer Council 131120 hotline and the more general Lifeline 131114.
PWC: Which online resources do you recommend parents with cancer go for information, support and sanity?
Em: I started on the lymphoma forum forum.lymphoma.com and from there found other online support groups that were for my specific subtype. There was a talented woman in our on-line group, herself a PMBCL survivor, who whipped up PMBCL.COM
It’s a rare subtype and there was very little about it on-line – even though you should never Google your disease when you are in treatment unless you are strong enough to read the sad stories too.
PWC: If you could change one thing about your cancer experience (besides the diagnosis), what would it be?
Em: I wish I had switch specialists sooner! I didn’t know I could.
“A friend said, ‘Anger hurts,’ and it does.”
PWC: What piece of advice would you give a parent who was just diagnosed?
Em: You will need to leave your child for a period of time, so make sure that you are leaving them with someone you really trust. You won’t be able to be there for your child for a while, and you will probably feel guilty about that. I found that I was too vulnerable when my son visited me in hospital, so I only saw him when I was at home. You just have to get through the treatment and there will be time afterwards.