Myeloma Mom: How Do You Tell The Kids?
My daughter, who is eight years old, saw a commercial for a cancer hospital the other day. She’s seen these types of commercials before, but this time, something clicked in her brain.
“I don’t want to get cancer and die!” she exclaimed.
I reassured her that she was absolutely not going to get cancer and die because, well, that’s what you tell someone who is eight.
“And just because people have cancer does not always mean they’re going to die,” I explained. “A lot of people with cancer can have treatment and get better, or they can live with it for a long, long time.”
I knew what I had to say next. Up until now, I had explained my myeloma to her as “something that’s wrong with my blood.” I’d never used the Big C Word in front of my child. Now I had an opening, and I figured I should take it.
“You know how I have something wrong with my blood?” I said. “It’s a type of cancer. But you know my medicine keeps me very healthy.”
There it was. I had dropped the C-Bomb in front of my kid. I waited for – I don’t know – the entire world to explode or something.
And she didn’t even blink.
“Yes, I know that,” she said matter-of-factly. “I was talking about the really bad kind of cancer. Not the good kind, like you have.”
And then “Good Luck Charlie” came back on the Disney Channel, and that was the end of that conversation. It hasn’t come up since.
Huh. I’d been imagining the “Mommy has cancer” conversation for years. I have a very smart, very dramatic, overly cautious child, and I had never imagined the conversation going that well. I know that someday there will be more conversations about how myeloma is not necessarily the “good” kind of cancer, but not now. And that’s fine.
For those of us diagnosed with myeloma in our twenties, thirties, and forties, deciding how and when to tell our young children about the disease can be one of the most stressful and painful parts of the diagnosis.
I’ve seen this topic come up several times on online support groups, and no two responses are the same. That’s how it should be.
How and when you explain myeloma depends entirely on the situation and the child.
In my case, I’ve been lucky: I’ve had eight years to build up to the cancer conversation.
I was diagnosed when my daughter was just six months old.
As a toddler and preschooler, she accepted my illness as a normal part of life. As far as she knew, everyone’s mommy went to the doctor all the time; there was nothing odd about spending one morning each month waiting for the FedEx guy to deliver a supply of Revlimid (lenalidomide). It was just what we did.
She was two years old when I had to spend three weeks at the Mayo Clinic in Rochester, Minnesota, for my stem cell harvest. My husband and I brought her along, and my parents came, too. The five of us stayed in a two-bedroom apartment near the clinic. While my husband and I spent our days at the clinic, she had the time of her life with my parents, exploring all of the secret tunnels and hallways at Mayo.
A year or so later, I started taking her with me to my doctor appointments. I wanted her to see that the doctor’s office was not a scary place, and that having blood drawn was fairly simple and didn’t hurt. That’s when I began explaining that there was something wrong with my blood – that it has “icky stuff” in it – and the doctor needs to check it every month and give me medicine.
By now, the doctor visits have become routine and boring for her – endured only by playing games on my iPhone – and that’s how I want it. My illness – at least for the time being – is not dramatic. It’s not scary. It’s just a regular part of our lives.
In time, I know there will be more questions that require more detailed answers, and that’s fine. For now, I feel we are right where we need to be.
How about the rest of you myeloma parents? Please share your stories about telling your children about myeloma.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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Nice column and insights. I was diagnosed in 2011 when my kids were 6 and 3. Over two years later, I never, ever use the "C" word...blood disorder is fine and accurate. That is how I prefer it and I would rather not distress them and have it go around school as kids chatter a lot. They have accompanied me to the NIH and even met Dr. Landgren, my myeloma expert. The worst part of the journey for me is thinking about the future of my wife and kids. Without them, I don't think I would be able to hack it. I have also responded quite well to treatment without SCT and so I have always "looked" normalto them. Knock on wood that it stays that way....Terry L.
Hi Karen,
Nice column! Having a little baby and going through the treatment must have been beyond difficult. You are an ultra super mom!
My daughter was 10 (sons 13 and 16) when I found out.
I didn't want them to hear it from kids on the playground, or Googling myeloma, so I told them. We had our little chat, and I also told them about the science behind the stem cell transplant and that it was kind of cool. Not in a fun way, but more of "this will not be fun, but the procedure is interesting" way. 10 minutes later they were wanting to do kid stuff...concerned, but no tears.
Last week was my 4 year anniversary of this thing and all is well.
I asked my daughter if she remembered "the talk" 4 years ago. And she responded with "of course"!! I was a little surprised, but I guess kids are sponges at that age and absorb a lot of information.
My grandson couldn't understand why we had to take Grandma to the doctor when I'm not sick. My son in law came up with an amazing explanation. My grandson is 4... There are these bad guys that live inside of Grandma. They are called cancer. And the doctor, he's a superhero who kills bad guys. So we have to take Grandma to the superhero doctor so he can get rid of all the bad guy cancers in Grandma's body. And sometimes even a superhero needs backup just like sometimes Ironman needs Captain America. So once a month, mommy takes Grandma down to Dallas for an even bigger superhero doctor. This was perfect as my grandson loves to pretend he is a superhero destroying all the bad guys in the world. Now even my grand-daughter goes "pew pew pew" in an attempt to aide the doctors in killing the bad guys in Grandma. She's 2. My grandson loves to be with me in the kitchen and help Grandma cook. He was rolling his own pizza dough at age 2. I think he's going to give a lot more to the world than food when his time comes. And my grand-daughter, she's just a little drama queen destined to be on a stage somewhere. And together, I am determined to see it.
Thank you, Karen for bringing up this topic. Terry, my situation is very much like yours. I was diagnosed in 2011, when my son was 3 years old. Since I have been very fortunate with my results, I have been able to avoid a SCT, and the complications associated with that procedure. So what he sees is a fairly normal (physically, anyways)father who is a bit lethargic.
Long story short, I know that at some point I need to tell him, but I haven't come close to deciding when that will be. Thank God for my wife, who's good judgement I can rely for this question.
I wish you continued health, Karen!
My son was 9 when my husband was diagnosed. He is a very insightful kid and picked up immediately that something was wrong. We were told on a Friday that "It doesn't look good" but didn't get any tests, etc until the following Monday- we were going to wait until we knew something definite to talk to our son about it, but he ended up asking me that Sunday "Mom, why are you so sad?" (So much for my acting skills- I thought I was keeping an "upbeat" face on) So, we told him that Dad has cancer, explaining that there are many different kinds of cancer and that this one is different than Herb's (his friend's non-smoking Dad who had passed away from lung cancer the year before). My son likes information, is a very factual kid (math loving, engineer type like his folks) so when he asked I gave more info. I explained that some of Dad's plasma cells have gone wonky and they are trying to make more cells like them, but our bodies need their normal cells to work properly. So, Dad would be taking a medicine called chemo that goes after fast growing cells, like cancer, but that we have other fast growing cells like the ones that make our hair and some in our stomaches, etc, so Dad might lose his hair and he will probably feel sick when he gets his medicine. We went on from there, giving more info as he asked about it- everything except prognosis, since even we don't know that (2 years or 20 years, who knows? It wasn't until he was 12 that he asked me "Is Dad going to make it?" (this was after a relapse from his stem cell transplant and 2 different chemo regimens that didn't work- thankfully, his current chemo seems to be holding things at bay). I told him that we don't know when Dad's time will be, but that we are working to try to make sure it's a long time from now. I would also like to mention that, with agreement from our son, we recently started having him talk to a counselor a couple of times a month (she is at a local center that specializes in helping families deal with grave illnesses and loss). Between all of the ups and downs his Dad's health has seen in the past year, plus your normal pre-teen stuff, we wanted to make sure he had a place to vent if he wasn't feeling comfortable talking with me about something. My son loves his time with the counselor and she makes sure that any tough subjects they talk about are enveloped by talk about things that make my son happy, so he always leaves his time there feeling happy and positive, but also like he's not bottling things up quite so much.
Hi Karen -
Telling my children was worse than being told my cancer diagnosis and prognosis. When I was diagnosed with multiple myeloma, I had a son in his sophomore year of college, a daughter in her sophomore year of high school and a daughter in the 5th grade. We had made a decision to tell them everything that was going on and to be honest with them. We made a promise to keep like as normal as possible given what I was going to go through. We notified the schools of both my daughters in the event they were having a bad day and they would have someone who knew what was going on that could help comfort them. One of the most positive things that came out of it was it brought us closer together. My youngest daughter for a school project in the 6th grade had to write a book on anything they wanted to but it had to be pre-approved by her teacher. To set the right picture she went to an all girls school with less than 10 girls. My daughter asked to write about me having cancer, we did not know what she was writing about. She wrote the book and the teachers made copies and had it spiral bound, then my wife had to go to school to get it and as expected it brought tears to both my wife and her teacher. I was talking to a person from the IMF one evening and they ask me to send the book electronically to her. The book has since been published by the IMF because it gave a view from the perspective of a child. The book is called, "It's Okay" and I sold on the IMF website with all profits going to the IMF. I have had many friends tell me it helped. I know this should be a sale pitch but it may help.
Steve, thank you for letting us know about your daughter's book! I just went to the IMF web site and ordered my copy!
I was diagnosed this year and have been on RVD since April. My son is 3.5 years old and my daughter is only 1.5. I have not told them that Daddy is sick or has a certain disease...yet.
My son is very aware and inquisitive. I tell him that I have to take special "daddy vitamins." I make sure to remove any bandages from chemo sessions before I come home. He is very empathetic and tells me he is feeling tired when he sees me battling with fatigue or that his back or "tummy" hurt when he sees me expressing symptoms. For now, he does not sense that I am different than most other fathers. I may be facing SCT soon and that will be a major disruptor in all of our lives.
I'm living for my kids. As they get more aware, and the "facts on the ground" become more grim, I am sure more difficult conversations will ensue.
Thanks for sharing how you handled these challenges. Bob, thanks for sharing how to (or not to) share this with a pre-schooler. Sharon, I may use the super hero route when the time comes.
I brought this up in support group a few weeks ago, when I had our head MM nurse and another woman at our support group, take me to task for not driving home the "incurability" factor of MM to our daughter. In the past, I had my daughter's girl scout leader read my the "riot act" for telling her ANYTHING. (she had hidden a stomach cancer dx in her husband from their daughter but he didn't go through nearly as much as my husband did and is fine now) There is no right or wrong thing to do. Kids are different. Tim's case was VERY scary in the beginning and I had no idea that he would do as well as he's done. In our case, it was impossible to hide from our almost 9 year old and we were at risk of her finding out on the playground because many people had found out. Like you, Karen, I just had a situation where I was bracing for the questions. The MM subject came on TV in a "say yes to the dress" episode. I knew she'd seen it before. I did not know how in depth the man had gone and that he called it a terminal cancer. I sat there, putting the game face on, waiting for a reaction from her, preparing for it, and there was none. So, I guess she knows. She is 15 now. I could not tell her not to google it when she got older, because what would a curious kid do then. I did feel though, that the longer she went not knowing, the better. I wanted to salvage as much of her childhood as I could. They can't do anything to change it and we didn't want her living in constant fear. I have always told her she can ask me anything, I've opened up conversations with her, but, I have done as therapists have advised me to do: "let her take the lead and don't offer information she is not asking of you." A friend I was e-mailing today, about this very subject, told me that her friend died of cancer and hid EVERYTHING from her 2 daughters until 5 days before she died. They didn't even know she had cancer. That's the lengths she went to to keep their lives normal. The shock was hard, but, they realize why she did it and are doing OK. It is a personal decision for all of us. Now, I'm off to find that book myself.
Thanks for another great column! I too have used "something wrong with my blood" since my diagnosis with my kids, they were ages 2 and 4 at the time. Now that my daughter is almost 8 herself I know I need to have the C-word conversation very soon. Very glad your daughter took it in stride!
Hi Karen,
Great column and it is generating a lot of interest. My two were 6 (daughter) and 10 (son) when I was diagnosed. Prior to the actual diagnosis they knew something was wrong because my back was bad. The day we (husband and myself) found out was awful, the doctors weren't sure what it was but I did have to go and see the oncologist asap. So keeping a straight face in front of the kids was really hard. I am pretty sure it was that night, after my daughter went to bed, my son came in and asked whether it was cancer. So we told him and explained that the doctors weren't sure. The reason we told him is that he would worry himself sick if we didn't tell him. The next day I was admitted to hospital so we told them that I had "bugs" in my back and I needed to get rid of them. They were okay with that and our youngest told her class (it may have been at show and tell) about the bugs in mums back. A series of chinese whispers ensured so I had people asking how my back surgery was. After that we decided to tell our daughter.
It was easy then that they both knew, the school and our community knew so the support for them was fantastic. Telling them upfront that I was going to lose my hair (I was initially treated with VAD) had my daughter waiting for it to fall out. She collected it when my husband shaved off my hair (big chunks had started falling out) and gave the small bits to the birds so that they could use it to make nests. Reduce, reuse and recycle
Other friends children would want to touch my head to see how it felt. There was only one friends child who didn't want to look at me (and wouldn't even come up to our place) - her grandfather had cancer at the time.
We have used counselling services when we thought they might be needed. We left it up to the children whether they wanted to have any more sessions.
I explained mm to my children as being similar to the storm troopers in star wars. All these storm troopers (clones) are being made and then they have to be put somewhere. The somewhere is my spine and they hollow out areas which makes the bone weak. I just asked them if they remember me telling them that - NO was the answer from both.
Throughout this journey I have tried to keep a positive attitude and tried to look for those silver linings (even when it seems that they are not there) and I have shared these times with my children. They see that it isn't easy but they also see that I don't give up. I would like my children to grow up having a positive attitude - no matter what life throws at them.
My son is playing on a computer beside me and I asked him (its his 15th birthday tomorrow) what he thought about my MM journey. His reply "Its been interesting". My next question was "Is there anything that you would have done differently" - quick as a flash, with a big smile and a dimple showing "Yeh - not get cancer". His sister agrees.
Take care,
Libby
I have a question regarding the annual flu shot. I'm MGUS and wonder if I should get the shot?
thanks
Bruce, most docs say yes...how did you end up posting here...lol
My youngest son was 14 and a freshman in high school when I was diagnosed. I agonized over when and how to tell him that I had cancer. Finally, I bit the bullet and sat him down for the talk. After I broke the news, he said, "I figured you had cancer, mom, because you have been really sick and going to the doctor a lot." So much for keeping it a secret!
We had just finished moving all three of our children back to different colleges when my normal every 6 month labs started showing there was something wrong. I waited to tell them until just before my bone marrow biopsy. Even as young adults, it was upsetting. They weren't expecting it. Course, I wasn't either.
We told each one separately and in the best way we could. At first it was "I have something wrong with my blood, so they are doing more tests." I wanted to prepare them with a possibility of cancer so that we wouldn't blindside them all at once.
After a positive diagnosis, my husband did most of the reporting. My son who lives in OK, was the most difficult, since he was there alone, a freshman in college. He is also a soft-hearted young man who loves his mommy very much. I ended up talking with him to give him a mom's pep talk. Our girls are closer to home and made visits when they could. I think they were all expecting the worst and hoping for the best.
Be honest, they know more than they let on, proven by the previous posts about the young children knowing before us nervous parents could tell them.
Hi Karen,
I was so moved by your column. This is the first time I have posted anything!
My husband was rushed to hospital this august with kidney failure. They told us he was hypocalcemic. Our son is 16 and daughter 11. It was hard because they had a shock seeing dad wired up to machines and not knowing what was wrong. I told them the facts everyday. What scans and blood tests he was having and what they were looking for. But my daughter was close to tears everyday "dad doesn't look well" she kept saying. Then finally our haematologist asked for a bone marrow biopsy . After that and a bone density scan he was diagnosed with Bence jones myeloma. He is 46.
At the moment all they know is that dad has something happening in his bone marrow that shouldn't. They help him sort his tablets out and know that it will be on going but we also haven't mentioned the C word to them. Primarily because both of them were starting new schools September and we thought they had enough to deal with. Also My husband was in shock. I don't think HE was ready for them to know. (If that makes sense). He has since responded well to his treatment so far and looking to have stem cell transplant at the end of jan.
Before he has his treatment we will have a little chat with them separately so they understand why dad is going into hospital (as they see him looking well at the moment). I know it's early days for us but we have been touched by yours and others families.
Wish you good health.
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