At Parenting with Cancer, we don’t like to sugar-coat the painful parts of cancer. Cancer sucks, and bad things can happen to good people. As such, we were struck by this wonderful program for fathers who have lost their spouses to cancer, and felt compelled to share it with our community for those in need.

“Men have a tendency to suffer in silence,” says Justin M. Yopp, PhD, a founder of the Single Fathers Due to Cancer Program at the University of North Carolina at Chapel Hill. “That’s a problem enough, but when there’s children in the home, that’s more of a problem.”

So Dr. Yopp, along with his team, Donald Rosenstein, MD, and Eliza M. Park, MD, run the program as part of the university’s Comprehensive Cancer Support Program, to help single fathers due to cancer cope with the loss of their wives or partners, meet the demands of parenthood, and manage their children’s grief. It’s a tall order, but it’s a very important one, because, Dr. Yopp explains, how a parent copes with grief as a direct impact on his children.

At first, the plan for the group was to provide a parenting/grieving conflict, but that got abandoned quickly.

“They were more interested in talking and hearing each other’s stories,” reports Dr. Yopp, Assistant Professor of Psychiatry at UNC. “Once they’re in the door, there’s no lack of ability to express emotions and process feelings. Our guys are open books in there.” And that was a surprise to him and his colleagues, who expected more reticence among the widowed men, who often don’t care for support groups.

“This group has been together over two years, but we never planned on it going that long,” he shares. In those two years, the group has tackled many emotional and parental issues, including how to talk about and honor Mom, establishing new traditions and rituals, how to discipline and nurture the kids, and resuming dating. One father recently grappled with filling in for Mom when a daughter hits the teen years.

“Having a mom who died from cancer makes you different or it makes you think it does,” explains Dr. Yopp. And not talking about it, he says, confuses the children.

A few mothers with terminal cancer have reported that the group provides them with reassurance that there’s something out there to help their families through the loss.

“Our dads are so interested in paying it forward, that they helped create the
web site and videos,” he adds. A new group starts at UNC in a few months, and Dr. Yopp hopes other groups will follow their model and launch elsewhere in the country. If you’re interested in starting a group, visit the Single Fathers Due to Cancer contact page.

“When we get a mass [of widows] in a certain area, we’ll partner up with a local provider. We won’t oversee it, but we’ll make the connection.”

Maya Silver with her father, Marc, co-authors of “My Parent Has Cancer And It Really Sucks.”

 At Parenting with Cancer, it’s never too late to celebrate Mother’s Day. Here’s a special message from Maya Silver, co-author of “My Parent Has Cancer And It Really Sucks.”

by Maya Silver

When I was 15, my mom was diagnosed with breast cancer. I never wanted to talk about it. Like many teens facing a parent’s cancer, I was fearful. I was ashamed. I felt guilty. While writing the book with my dad, I reflected deeply on the cancer experience in my family. For the first time since my mom was diagnosed, I processed and analyzed all of my teenaged emotions, reactions and behaviors during this difficult time.

And so, here’s a letter to mom. An apology. A clarification. A thank you:

Dear Mom,

I wasn’t always there for you. I didn’t always ask you how you were doing. I avoided you. I was embarrassed that you were sick, bald, exhausted. I chose sleepovers with friends over family nights. Did I buy you flowers? Did I give you a hug every night before you went to bed? Was I ever mean? Did I yell?

I can’t remember the details. The year of cancer in our family was a blur. And I wish I were a better daughter at the time.

After talking to so many other teens going through this experience and spending a year reflecting upon, thinking about, processing cancer, I can now give you a window into my teenaged mind. I wanted to be independent. I didn’t want to pitied. I believed so strongly that you would survive that I avoided fear and rejected grief about the experience. I felt guilty when I wasn’t there for you.

I want to apologize for the way I may have acted, for the things I didn’t do and the words I never spoke. I want to let you know that I was scared, I did care and I did want to be there for you.

And I want to thank you for being an incredible model for me and for anyone battling cancer. You dealt with it realistically and gracefully — all while still being an awesome mom. Thank you for not holding me to higher expectations (even if you should have!). Thank you for understanding that I still needed to be a teen. Thank you for forgiving me if I wasn’t always the best daughter. And thank you for the one silver lining of our cancer experience – the opportunity for Dad and I to give back and fill a gap in resources. Now, teens will have a guide to turn to and hopefully be better sons and daughters to a parent with cancer than I was!

Happy Mothers Day.

Love,

Maya

Maya and Marc Silver are the co-authors of “My Parent Has Cancer And It Really Sucks” (Sourcebooks 2013).

Maya and Marc Silver understand what it’s like for the million or so teens whose parents have cancer each year. The daughter-father team from Chevy Chase, Maryland, have written, “My Parent Has Cancer and It Really Sucks: Real-life Advice from Real-life Teens” (Sourcebooks 2013), a  guide that encompasses their own experiences – Mom had breast cancer — as well as input from medical professionals and other teens.

In 2001, Maya’s mom Marsha was diagnosed with bilateral breast cancer, which resulted in lumpectomies, six cycles of chemotherapy, and radiation. Maya then 15, felt she had to become a parent figure to her little sister, whose bat mitzvah was  scheduled for a month after their mom’s diagnosis.

Parentification
This is what Maya and Marc refer to as “parentification,” when roles shift and teens have to take on more adult responsibilities. Marc says, “Cancer robs people of their childhoods,” and teens can feel it the most. “You may feel like you have to lean on your teen,” he explains.

The Silvers interviewed about 100 teens for the book, and found several common issues. For instance, teens feel like they have to protect their parents from bad news, such as poor grades, or personal issues, like boy/girlfriend trouble, that they used to share with their parents.

Conflicting Emotions
Maya says that teens often have “weird anger.” (i.e. “I’m trying to become who I am and you’re telling me I have to deal with this!”)

Some teens feel guilty for having fun when a parent has cancer. Others lament dealing with the cancer publicly, feeling embarrassed by their parent in a headscarf, or as Marc says, “Why is your mom so bald and so cranky?”

Marc and Maya Silver, co-authors of “My Parent Has Cancer and it Really Sucks.”

Dealing with Friends
The Silvers warn teens that their friends may not know how to act around them, which can create a rift in friendships.

“It’s not their fault that they don’t know how to talk to you,” says Maya, who suggests, “Tell your friends what you need from them.” That means if you feel like hanging out, tell them, and if you don’t want them to say “I’m sorry” about your parent’s cancer, tell them.

Communication and Support
Marc recommends making sure that your teen has a go-to person outside your immediate family to confide in, such as an aunt, uncle or other family member, or a guidance counselor, teacher, coach, or other trusted adult. He also warns parents not to overshare with their teen, mistaking their maturity level for an adult’s.

“There are some things you don’t share with the kids,” he warns.

He adds that it’s important to share with your teen what kind of help you need from them. When his wife Marsha was one day post chemo, he found the kids watching TV, and it didn’t sit well with him.

“I exploded at the kids, and I was being Super Dad,” he admits.  “I asked, ‘Can’t you guys help me?’ and they said, ‘Well Dad, if you just ask…’ It’s so important to talk about what you need and how we are doing.”

Both Maya and Marc recommend finding other teens in the same situation who understand, either through a support group or places like Camp Kasem, a college student-run summer camp for kids ages 6-16 with a parent with cancer.

That’s where the Silvers met one teenager who told them, “My real age is 16, but my cancer age is 40.”

Yep. Cancer sucks. But the book? That is perfect for the teen whose parent has cancer.

In the fall of 2010, Fern Reiss was diagnosed with malignant invasive ductal carcinoma with lymph node metasteses, malignant invasive lobular carcinoma, both sides. While she underwent  treatments — four rounds of adtriamycin/cyclophosphamide, 12 taxol treatments, five weeks of radiation, a year on herceptin — she couldn’t find the book she wanted to help her through it. So, she wrote it. Now on maintenance tamoxifen, she shares her extensive knowledge in “The Breast Cancer Checklist.”

Q. When you were diagnosed with breast cancer two years ago, you couldn’t find the book that you wanted to help you get through it, so, you wrote it. What makes this book different from what you found on the bookshelves?

There are a lot of great books on breast cancer, but the book I couldn’t find (and ended up writing) was a book that would keep my life on track through treatment.  I wanted something that would keep me organized; I wanted something that would keep me from missing something important that I should know (like, if I timed my surgery correctly, I might get a better outcome; or to make sure I got a dental appointment before I started chemo) and I wanted something that would just walk me through the whole treatment process so I’d feel in control.

Q.  What is the single most important tip you can provide parents who have just been diagnosed with cancer?

Think about how you’re modeling behavior for your kids.  Everyone has to face adversity at some time or other in their lives–for some it’s illness, for others it’s something like financial hardship–and if you view your cancer treatment as an opportunity to model how-to-behave-in-adversity behavior for your kids, it will help them through your treatment, (and it will also help you.)

Q. What was the hardest part about balancing cancer treatments and life?

“ If you view your cancer treatment as an opportunity to model how-to-behave-in-adversity behavior for your kids, it will help them through your treatment, (and it will also help you.)”

The hardest part is that you sometimes have so little energy, it’s impossible to do everything you’re used to doing.  I kept up family time and work, but stopped entertaining.  For me, that was a balance that worked.

Q. What are the top 5 things breast cancer patients need to ask their doctors when they are diagnosed?

There are many more than five things, but here’s where I’d start:

* What medical things do I need to take care of before I start treatment (dental work, flu shots, shingles vaccine, Tdap, Pneumovax)? (There’s a long list of things like this in my book.)

* Can I time my surgery for the second half of my menstrual cycle (which research has shown improves outcomes)?

* Should I cryo-preserve my tumor?  (That way, you’ll have the cells if you ever need them for a personalized cancer vaccine, which is the way the research is moving)

* Can I schedule my surgeries simultaneously (ie, reconstruction and mastectomy, simultaneous port insertion, brachytherapy catheter, etc) to avoid more surgery?

* Should I consider egg-freezing (in case you should want to have more children post-treatment)?

Q. What can spouses, friends and family do to support the patient and their families during treatments?

* Suggest the patient do a guided visualization tape to lessen the pain of surgery and/or increase the efficacy of chemotherapy.  If they don’t have time/energy, make one for them.

* Offer to help shop for a wig or headcovering (which can be an overwhelming and emotionally draining thing to do yourself) or buy them a comfy cap to sleep in.

* Cook for the patient and family, especially whole grain and vegetable-heavy dishes that are more time-consuming  (but definitely healthier!) Better yet, organize your community to support them in a meal-sharing system such as CaringBridge.org or LotsaHelpingHands.com to organize the family’s food (and transportation and childcare) needs.

Q. What can you tell breast cancer patients about the post-treatment period?

Some women find post-treatment the most difficult part of the experience, because you’re ‘supposed to be’ done, but emotionally, it’s hard not to feel some sort of ‘what now?’ letdown.  Marking milestones–taking the day off to go to a museum or cafe every week or two when you would otherwise have had a treatment; throwing a party or taking a vacation to mark the end of treatment; and making some life changes, whether that’s a resolution not to over-schedule yourself or a commitment to volunteer at a local cancer association, can be extremely helpful.

Q. Your book offers tips on where to find freebies, such as housecleaning services, that are available only to breast cancer patients. What can you tell patients about accepting help, even when it makes them feel weak or somehow less of a parent to do so?

Some parents feel guilty or insufficient when they need to ask for help, but keep in mind that you don’t need to always be superwoman, and that you’re making others happy by accepting their help.  And once you’re back on your feet, you’ll be able to pass the help along to the next woman who needs it.

April Stearns with Nia, who turns 5 this year.

Name: April Stearns
Child’s name and age: Nia Stearns, 4 ½
Location: Santa Cruz, CA
Diagnosis: Stage 3 Breast Cancer (E/PR-, HER2+)
Treatments: 4 months of chemo (Taxol, Herceptin, FEC); radical modified mastectomy with lymph nodes; 28 sessions of radiation
Current status: Cancer-free; in the middle of radiation treatments and on-going Herceptin treatments
Twitter handle: @TheCancerSlayer
Blog: I [Heart] My Life (www.aprilandjoseph.typepad.com)

Parenting with Cancer:  How did you tell your daughter that you had cancer?

April Stearns: My daughter was still nursing to fall asleep at night when I was diagnosed. She had to wean for the initial MRI so I had to tell her something almost right away. She knew something was there in my breast, anyway, because the tumor was quite large and we both could feel it. She’d stopped wanting to nurse on that breast in the weeks before my diagnosis.

So I told her that there was something growing in my breast called cancer. I told her that it couldn’t hurt her, but that it wasn’t good for me, so I was going to be having some really “big medicine.” She cried and cried and said she didn’t want me to die. She knew right away that it was serious, no matter how hard I tried to lessen the blow. We read a lot of picture books about mamas with cancer. That helped a lot, but also really brought the cancer home.

PWC: What’s the best thing someone did for you or your family to help during cancer?

April: My sister-in-law was amazing – from several states away she organized a food tree that had meals delivered to us during my chemo treatments (so, several months of meals!) and she organized a “play date tree” for the same time period. So while I was undergoing chemo, my little one was having play dates with trusted friends and relatives multiple times each week. That really helped me cope, to know that she was having fun and taken care of during my doctor appointments and while I was recuperating in bed.

“ My daughter told everyone she met that I had cancer: strangers at the park, clerks at the grocery store, other moms at the library. She needed to talk about it.”

Later, my sister-in-law came and stayed with us for the two weeks immediately following my mastectomy. She was my daughter’s live-in nanny during that time, which was so helpful because then my husband could focus on helping me heal. It was so wonderful to have this kind of support, because the mastectomy was really hard on my daughter. She was angry and scared, and so it was wonderful for her to have a loving, present adult to be with. Also, my daughter could sleep with her aunt instead of trying to be in bed with me during that painful time post-surgery.

PWC:  What piece of advice would you give a parent who was just diagnosed?

April: Diagnosis doesn’t necessarily equal death. I know you want to just pull the covers over your head and cry in bed for a good long time, but for better or worse, you can’t do that with kids. Let them put a smile on your face. Let them keep you grounded and here now.

PWC:  Wig, headscarf or bare-naked head?

April: Hats. Lots of hats.

PWC:  What has helped your kids through this tough time?

April: For a long time, my daughter told everyone she met that I had cancer: strangers at the park, clerks at the grocery store, other moms at the library. She needed to talk about it, and my husband and I never tried to censor her. It was interesting seeing the reactions she got, but she wasn’t looking for their sympathy. She simply needed to talk about it.

Also, we did something called “Chemo Gifts.” Every week when I was in the Chemo Lounge getting a treatment, my daughter got a little present to help make the separation easier for her. These were little gifts: stickers, games, stuffed animals. Most of these gifts were sent to us to be squirreled away by loving relatives. It helped to put a positive spin on a really hard time.

PWC: What keeps you awake at night?

April: Two things: Will the cancer come back? And, will I be able to have a second child? I was diagnosed just as my husband and I had decided to go for baby #2. Because I was already Stage 3 when I was diagnosed, we didn’t have time to freeze my eggs or anything like that. Chemo put me into premature – hopefully temporary – menopause. My periods have not yet returned, but I’m still in treatment. If my periods return, and the cancer stays away, we hope to try for a baby in a couple of years. My daughter asks all the time when she will have a baby brother or sister.

Cameron Von St. James with Lily and Heather

Name: Cameron Von St. James
Relation to patient: Husband to Heather
Child’s names and age: Lily, 7 years
Location: St. Paul, MN
Patient’s Diagnosis: Pleural mesothelioma
Treatments: Extrapleural pneumonectomy, radiation & chemotherapy. An extrapleural pneumonectomy (EPP) is the removal of the diseased (left) lung, the pleura (lung lining), part of the pericardium (the lining of the heart) and the left half of the diaphragm (the muscle that separates the chest and abdomen).
Patient’s current status: Cancer free – will be celebrating 7 years on February 2nd 2013!
Twitter handle: @vonstjames
Blog: http://www.mesothelioma.com/blog/authors/cameron/Parenting with Cancer: What’s the first thing you thought of when your wife was diagnosed?

Cameron: I was stunned. Three-and-a-half months prior to my wife’s malignant pleural mesothelioma diagnosis, we had just celebrated the birth of our only child, our daughter Lily. I thought I would be celebrating Lily’s birth and the start of our family; settling into my new life as a father.

The FIRST thing I thought of when I learned about my wife’s cancer was “Get us to Boston.” Our doctor had given us three choices of where to go for continuing our fight against the cancer, and Boston was what I considered at the time (and still do) our best option for beating the disease. I also knew at that moment, no matter what happened, that I would no longer be the same person. I knew the experience was going to change my life, I was just afraid it would be for the worst.

PWC: How did you tell your daughter that her mom had had cancer? 

Cameron: Our daughter Lily has always known about Heather’s cancer. I still find it strange to think her mother has been fighting mesothelioma her whole life. It is the only life she has known.

PWC: What’s the best thing someone did for you or your family to help during cancer?

“ I knew the experience was going to change my life, I was just afraid it would be for the worst.”

Cameron: Wow, I don’t know where to begin. We have been blessed to be surrounded by so many wonderful, caring people it is hard to know where to begin. There were two benefits thrown for us. Numerous people offered help in so many ways; from family and friends to complete strangers. I have been blown away time-and-time again by their kindness and generosity. There wasn’t one best thing. The best thing was everything, all the help and support we received. I don’t know how my wife and I would have made it through such a difficult time without this support.

PWC: What’s the best thing someone said to you about caring for a cancer patient?

Cameron: The best bit of advice I received was from a stranger at one of our benefits. He had come across a flyer advertising it, and decided to stop by. Years earlier, his wife had been diagnosed with cancer. After the experience, he vowed to go to every benefit he came across just to stop by and help in any way he could. He introduced himself and we struck up a conversation. The one bit of advice he gave me was, “If anyone offers you help, take it. It’s one less thing for you to deal with, big or little, and it should remind you that you are loved. You are surrounded by people who care enough about you to help.” And he was right! It helps lower the stress levels too.

PWC: What piece of advice would you give a parent is taking care of someone who was just diagnosed?

Cameron: Take time out for yourself! Allow yourself to be human, to make mistakes, to have bad days. We all do. Take a moment to cry or yell or what ever you need to do. Then take a moment to recover and move on. We can’t give 100% of ourselves 100% of the time. To be your best, and to give the best care as both a parent and a caregiver, you need to take time out for yourself. I see this commonly in caregiver parents. They feel guilty if they take any time “off” for themselves. They become so run-down and tired that they are no longer effective as either a parent or a caregiver.

PWC: What’s been the hardest part about the cancer/cancer treatments?

“If anyone offers you help, take it. It’s one less thing for you to deal with, big or little, and it should remind you that you are loved.”

Cameron: The chaos and uncertainty. I went from being able to plan my life months or years in advance to one where I planned from one doctor’s appointment to another. Never knowing what the next test results were going to be…. good news or bad. I had a hard time picturing what my life was going to be like from one week to the next. Oh yeah, and I was a new father with a 3½ month baby girl! Crap, I wasn’t prepared for this.

PWC: What has helped your daughter through this tough time?

Cameron: Our families. Our families helped us raise our daughter. They cared for her while my wife and I were in Boston for treatment, while my wife was recovering from surgery and I was working, trying to pay the bills and catch up. To this day, they still play an important part of our daughter’s life. My wife and I are thrilled at the bonds and relationships our daughter has formed with our families.

PWC: What keeps you awake at night?

Cameron: Sand in the bed from the dog’s feet and maybe spiders, the big hairy ones!

PWC: What is the hardest part about being a caregiver of a cancer patient, especially with kids?

Cameron: It’s probably unlike any experience you have ever had before. It’s chaotic, it’s stressful, and you just can’t quit or walk away. There are times that you are not going to feel in control of your life, and it can go on for a long time.

PWC: How do you feel when someone calls you or the patient an “inspiration”?

Cameron: I think I still blush, and I am honored. I love to hear when the advise I offer has helped or when others find inspiration in my story or work. Thank you.

PWC: Which online resources do you recommend parents with cancer go for information, support and sanity?

Cameron: I have just started to venture from my usual social groups/sites, which are focused on mesothelioma and asbestos related diseases to social sites and blogs that are not specific to mesothelioma. I am continually finding useful sites and resources however I don’t feel I have explored enough to have what I would call a “recommended” list of resources. There are many out there and it shouldn’t take too much looking to find a social media site or support group that can help.

PWC: What else would you like parents with cancer and/or their caregivers to know about you and your experience?

Besides being a husband and caregiver to my wife Heather, I was a caregiver for my father in the later years of his life while he was dealing with Alzheimer’s and Parkinson’s as well as starting to help care for an aging mother. Oh, and I love my wife’s favorite saying. “Life’s a banquet and most poor suckers are starving to death!” -from the film, Auntie Mame.

My kids seem to think I’m too old for this hat. I dunno.

Every once in a while, I realize that I don’t know how to be middle-aged, probably because I sort of fast-forwarded here, like a Tivo through the “Last week on Parenthood” part of the show.Diagnosed with an aggressive form of non-Hodgkin’s lymphoma at 40, I went straight from my thirties to the hospital, where the other patients were all twice my age. For me, 40 was the new 80. And it looked nothing like “This is 40,” with all its “let’s exercise and cut back on screen time and make something out of life.” My “This is 40″ was more like “This is Me Hoping I Make it to 41.”

But today is not all that. Today, I turn 46, and frankly, I’m not sure what to make of it. I spent my early forties (wait, where did those go?) trying to make it to the 5-year cancer-free mark last November 9th — and I did it! As a result, I never even considered being 46 (or 50 or 60.) I never made the transition to middle age.

I never growled at my wrinkles in the mirror or lied about my age or flirted with a 30-year-old waiter just to see what he’d do. I don’t look for gray hairs and I refuse to take up running. (There’s no ball. Why are you running?) And I continue to kick soccer balls with teenagers and hang upside-down from jungle gyms whenever a kindergartener asks me to. What’s more, I don’t complain about getting old because that is the point of life.

But now and then, I wonder, “Should I be leaping over puddles? Shouldn’t I go around them at my age?” Or “If I hate the music in this clothing store, does that mean I’m too old to shop here or just that it’s bad music?” Or, “When should a woman stop wearing lip gloss?”

I don’t know the answers because I didn’t ease into middle age; I backed into it from old age. I have been fussed over by concerned nurses, and I have watched “Jeopardy” with the Medicare set while waiting for a CT scan. I have had people rush to open the door for me and carry things for me because it appeared that I was too frail to handle it. I have had a close-up and personal look at death. Ah, but, as the song says, I’m younger than that now. I’m the Benjamin Button of Generation X.

Today, I turn 46. Please bear with me. I don’t know how to be middle-aged. If you have any answers for me, please do share. I’d really like to know when to stop wearing lip gloss.

Originally posted at MommaSaid.net

Just a year in remission from an aggressive form of non-Hodgkin’s lymphoma, I knew that it could easily have been my own funeral, having come just two months from death myself. And yet it was nothing like what I’d pictured for my final farewell. Although I understood that people grieve in their own ways, that’s not how I wanted to have my life memorialized.

On the way home, I called my brother.

“If I die first, you’re in charge of my funeral,” I told him. “I want upbeat music and funny stories and laughter.” No silent cake-eating for me.

Now I have another request for my brother, having read the heartbreaking obituaries of the children who died in Newtown, Connecticut: I want my obituary to read like theirs and not like an adult’s.

Obits for adults are mostly about where they worked and what honors they received:

“He was employed by Hewlett Packard for 36 years.”

“She volunteered for the Springfield Animal Shelter.”

“She received a Lifetime Achievement Award from the Oakland Chamber of Commerce.”

But children haven’t lived long enough to rack up many achievements, so their obituaries read much differently. The Newtown obits illustrate how:

“Ben loved the local soccer program, often running across the field long after it was actually necessary, but always smiling and laughing.”

“James would often sing at the top of his lungs and once asked, ‘How old do I have to be to sing on a stage?’”

“Emilie could always be found with her markers, colored pens and paper, because as she put it, ‘I have so many ideas of things to draw and it is hard to remember them all.’”

“Allison would often surprise people with random acts of kindness, once even offering her snacks to a complete stranger on a plane.”

For adults, obits are about what they did. But for children, they’re about who they were. It’s about their spirit, that nebulous thing we sense when we’re around people we love and enjoy. As a result, the obituaries for the children of Newtown could end up less of a reminder of how they died than a lesson on how to live.

I’m not suggesting that adults skip their weekly status meetings so they can “twirl in a pink tutu,” like six-year-old Olivia of Sandy Hook Elementary School did. But maybe you can bring some homemade banana bread now and then, or lend your jacket to a co-worker who’s chilly. Or make everyone laugh.

I’m asking my fellow adults to reconsider how you’d like to be remembered, and then start living that way in small ways, every day. Live so that your obituary reads less like a résumé and more like a tribute to someone who will be dearly missed.

On Christmas, my brother, his daughter and my sons each wrote about a dozen one-sentence tributes to my 75 year-old mother. My son thanked her for sharing stories from her “infinite memory.” My brother recalled how she always made sure his soccer team had both the green and the orange-flavored Gatorade at half-time. I wrote about the time she danced the jitterbug with me in the back of a store, only to discover we’d been on closed-captioned TV at the checkout counter the whole time.

In a little jar, one slip of paper at a time, we shared what it is about her spirit that will stay with us for a lifetime. At her funeral as at mine, there will be no silent cake-eating. There will be music and laughter, and our obituaries will read like a child’s.

Cross-posted at MommaSaid.net.

Em Sun with her son, Luke.

Name: Em Sun
Children’s names and ages:  Luke, 5
Location: Australia
Diagnosis: PMBCL and then CNS relapse
Treatments: 6XEPOCH-R 4XMex/Cytarabine 20 rounds whole head radiation 32gy
Current status: No evidence of disease
Blog: betterthandead.wordpress.com

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.

Cristina Rivera around age 9, with her father, Victor, who passed away from colon cancer at age 56.

The first time her father got colon cancer, Cristina Rivera was in middle school. He had surgery and chemotherapy and was cancer-free for a few years.But when Cristina was a freshman at Princeton University, her dad’s cancer returned.

“At the break, my parents told me it’s back and it spread,” recalls Cristina, a freelance writer in Brooklyn. “They were optimistic, saying ‘We’re gonna beat it.’”

But Cristina sensed it was worse than her parents were letting on. The details of his prognosis seemed fuzzy to her, but she knew the cancer had metastasized to her father’s brain.

“I was like, ’Wow. I can’t see him getting better’,” she says. And yet, her parents remained optimistic — at least around her. When the oncologist began to explain the situation to her parents and Cristina, “my mom shooed me away.” But she knew that the tone the doctor was using meant that her dad wasn’t going to get better.

Cristina doesn’t fault her parents, whose optimism was rooted in their devotion to their religion. Her mother went to church every morning and every Sunday mass. Besides, she says, “Who wants to tell their kid, ‘Your dad is probably going to die’?”

When school started back up in the fall, Cristina considered staying home, but her mother said, “I don’t want you to worry about this. Focus on your school work the best you can,” recalls Cristina.

A few weeks into the semester, her mom left a voicemail message that her father’s health had taken a turn for the worse, but Cristina missed the message that her mom was coming from her home in northern New Jersey to pick her up. Five minutes after she finally heard the voicemail message, her mom showed up, crying.

Cristina’s father had passed away.

“I knew the prognosis was bleak, but I didn’t realize he was so close to death,” says Cristina, who says she would have liked to have spent her dad’s final weeks with her parents. “I regret wishing I was there to say goodbye.”

Cristina’s story is typical of parenting with cancer. We parents want to shield our children from the worst of our cancer, but in the process, we can rob them of their emotional rights to process and grieve in their own way. Being age appropriately forthcoming about illness, treatments and even death is crucial to the long-term effects of cancer on your kids.

“The most important thing is to be honest,” says Cristina. “Kids can sense when things are off.” While she understands the instinct parents have to protect their children, she says, “Either way, they’re going to be hurt. So it’s better to prepare them than for them to be blindsided.”

She advises children of parents with cancer, “Let yourself be sad and let yourself cry.”

She suggests that families look outside themselves for help. She credits a support system of church members and neighbors for helping her parents through the toughest of times. “When friends came, my dad could lighten up a little bit,” she remembers. “I saw a bit of his old self peeking through.”