Mohr’s Myeloma Musings: How And What Do We Tell Our Children?
My topic for this column came to me during my son’s recent birthday party. Because I was still suffering from the effects of a recently contracted RSV virus, I kept apart from everyone and watched the activities going on in the kitchen and dining room from afar in “my chair” in the living room.
As we celebrated his 19th birthday, I couldn’t help but wonder how my condition has impacted him and whether I have done the best I could in helping him and his older sister deal with the fact that their dad has an incurable disease.
One of the first tasks those of us diagnosed with multiple myeloma have to tackle is to tell our loved ones of our new reality. Not only do we have to tell them that we have cancer, but also that, in all likelihood, the disease will cut our lives short.
The average age at diagnosis is in the mid-sixties, so in most cases the task of telling young children that mom or dad has an incurable disease is avoided. I can’t imagine how difficult it must be to be diagnosed with this disease having to live with the fact that the odds are against your seeing your kids go on their first date, make a game-winning shot, graduate from high school, walk down the aisle on their wedding, and have grandchildren you can spoil.
Regardless of how old our children are, we wish to spare them from as much pain as possible. Unfortunately, this is not always possible, so we are confronted with the task of how and what we tell them. Obviously, the age of children and our condition dictates how we address this topic.
I once had the unpleasant and gut-wrenching task of telling a student that their only living parent had died. After having gone through that experience, I am thankful that my two children were young adults, ages 16 and 20, when I was first diagnosed. They were more than capable of dealing with all the aspects of their dad having multiple myeloma.
Given that I hold a public position in our community, I felt it was important not to leave gaps in the information I provided them - otherwise, these gaps would be filled with misinformation, guesses, and speculation.
My wife and I pulled no punches in describing prognosis, treatment and side effects, quality of life issues, and how the disease could impact our family financially.
The final thing we told them, which is probably the best thing we did, was that, despite the fact that we were dealing with an incurable disease, we would tell them when it was time to worry. Fortunately, we have not had to tell them that yet.
To reinforce the idea that it was not yet time to worry, both of my children accompanied me to my cancer center for one of the 25 radiation treatments I had. I felt it was important for them to have a sense of what this first round of treatment involved. I also wanted to demonstrate to them how routine the treatment was. They were both underwhelmed by the trip, surprised at how little time the actual treatment took.
My wife prepared them well on how to deal with my occasional dex rages. I noticed that the room would quickly empty when I would go on a rant. I have since learned that they had a signal in place that resulted in me often times talking to the walls.
It goes without saying that the autologous stem cell transplant that I had last June was the most significant event of my myeloma experience so far. We allowed our children to visit twice during my 16-day stay at the hospital; once at the very beginning of the process, and once near the end as I approached discharge. They were spared the ugly days in between.
My wife and I have also taken steps to guarantee that our children will not inherit any debt upon my passing.
One thing I still want to do is have my children accompany me on one of my three-month check-ups. I think that it is important for them to meet my doctor and the medical team that is working hard to keep me alive for as long as possible. I also want them to be able to put a name to a face my wife and I so often refer to.
Regardless of what crisis we deal with in raising children, the best we can do is give them the tools that they need to succeed and hope that, in doing so, their foundation is strong enough to enable them to face any challenge they will encounter.
As we move forward, and as I mentioned in my last column, our goal now is to make memories with our children. The best way to do this is to stay involved in life and do the things we enjoy as a family for as long as we can.
I am interested to hear how others have dealt with the task of preparing their children to being children of a parent living with multiple myeloma.
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
A really interesting article Steve.
I was 34 when I was diagnosed, 35 when I started treatment and 36 when I had my transplant. My kids were just 2 and 4 at diagnosis and like you suggest, my world fell apart. And largely because of what they were going to lose not having me around.
But I have just celebrated my 40th birthday, and am now 3.5 years post transplant. I hope I'll see them go to secondary school now....something I never believed would happen....my aim now is to see them off to Uni and deal with the teenage hormones! I'm lucky though. I have friends whose children have lost young parents to this disease.
We have been open with the kids...as much as we have felt necessary. They have always known my blood was poorly, that hospital was to try to stop me being so poorly and as time has gone on that I have something called myeloma. Since they were about 7 and 9, they have known it is a cancer but we make sure they know I am relatively well at the moment. I do a lot of myeloma-related fundraising, so it has been crucial for us to be relatively honest as the one thought we had was that they wouldn't ever find things out from other people or feel we were hiding things from them. We believe that honesty and trust is key to our relationship with them....but remembering we are adults and they are still only little.
I am sure if and when I relapse,we will have to tell them more. I hope we have made the right decisions so far ... I suppose only time will tell
Hi Steve,
Nice article. As an aside, I think letting the children visit a time or two with the doctors puts a more complete face of you on the doctor's radar. Since they see hundreds of patients in between each one of our nerve wracking visits, reminding him he is making life and death recommendations for a family helps him remember me better.
I sat down with my 10, 13 and 16 year old children with my wife present. I told them it was cancer and that it was a pretty bad one. But I also told them how "cool" the transplants would be and explained how taking out my stem cells and saving them allowed the doctor to give me a high dose of cancer-killing chemical, and then, afterwards, they will inject my old stem cells back in and they recolonize -- almost medical science fiction. And then I'll be able to watch them grow and build me a new immune system, via blood counts!!! (In the movies, one of the kids would have began studying to be an oncologist that night)!
But I also told them I might not be making as much money as I have in the past, or worse, I have a chance of dying in the next 7-10 years, and that they should be prepared to help a lot with paying for college, maybe helping Mom. So get good grades and try for scholarships, etc. But I also played up the fact that, of all the cancers out there, myeloma has seen one of the fastest advances in new treatments of them all and that I thought 7-10 years was going to change soon to 10-15 years ... (sugar coating, I guess).
After 30 minutes of my talk, I was expecting sniffles, questions, or something... but what I got was, "Hey, can we go now?" And they went about their usual activities. Kids do care about their parents, but I've heard and observed that kids mostly want to know how things will affect them as individuals. And telling them to work harder in school I think gave them a way of being involved ... I think. I hope? Ha.
But I think talking to all of them at one time was the key for our age group. 5.5 years later, the topic doesn't come up much EXCEPT when they bring home a friend with a cold, or don't wash their hands.
Good luck to you, Steve, and thanks for a nice article.
Our son was 9 when my husband was diagnosed. When the doctor first said "It doesn't look good" (he isn't our doctor anymore, by the way), it was a Friday afternoon and we decided to wait until the tests were done and we knew something definitive before we told him anything. But, on Sunday afternoon, my son asked me "Why are you so sad?" (Guess I won't be winning any Oscars, as I am apparently a really bad actress.) From then on, we have been totally forthcoming with our son. After 4.5 years of this, though, he will occasionally ask to not hear about the Myeloma for awhile, unless there is a big change (we don't hide it, and it will come up at the dinner table, but we give him some space on it).
One of the things we focused on was making sure he knew how many people were here to watch out for him, in general, and especially for times when we couldn't be (during the transplant, when his Dad was in the hospital and I was back and forth)- aunts, uncles, grandparents, friends. Combine his Dad's transplant, multiple relapses, etc, with the onset of adolescence, and we decided to add a wonderful counselor to my son's support system - when he's having a rough time, he'll ask "When do I see Jenny next?" An excellent outlet.
Good topic Steve thanks for bringing it up.
Two and a half years ago, my kids were 21, 23, 25 and 27. From the beginning, I was very honest with them. I also told them that it would help me a lot as they would pursue their live's to the fullest, so that I wouldn't have to worry about them. That is what they did. Graduating for one and making a world trip for 6 months after that, getting married and having a son for another, going for a masters the next and finally finishing his study for the fourth one. All four of them went with me for checkups. They pamper me, but also are busy living their lives and they live wide spread – Netherlands, France, San Francisco and one nearby in Wisconsin. We try to come together at least one time per year for a week.
Hi Steve, Great article - it is indeed hard telling children. As much as we would like to shelter our children from life's harsh realities, I believe, like you, it is better to give them the tools so that they can deal with the problems they encounter. Of course, that is easier said than done.
My children were 6 and 10 when I was diagnosed (they are now 12 and 16). They knew something was wrong before I was diagnosed, as I had a really bad back. We hadn't planned on telling the children straight away, but when I was in hospital hooked up to a bag labelled cytotoxic, it is a little bit of a give away. When I came home my eldest asked whether I had cancer. It was so much easier dealing with the situation when they both knew. When I lost my hair, my 6 year old daughter collected it to give it to the birds for their nests - reduce, reuse, recycle.
There is a vast difference in telling someone you have mm and preparing someone to help you live with mm. They have to know how they can help - in part, that will come with experience. My children know what a simple cold will do to me; consequently, they are proactive if they feel sick. It is a team effort.
I am still trying to work out how I can incorporate them cleaning up their rooms as part of my myeloma management plan. It doesn't seem to be working so far!
Aloha Steve,
Excellent topic and a great article as always! I think you did an excellent job of telling your kids and having them share the experience.
My boys were 11 and 12 when I was diagnosed. Telling them was one of the hardest things I have ever had to do. My wife and I told them everything we knew and were completely honest about my future and all things we didn't know.
Because of their young ages, we tried to not overwhelm them with details but instead focused on the positives. My diagnosis caused us to have to sell our home and I am sure that was the most traumatic part of the experience for them. We have tried to always keep them up to date with developments.
Death is a part of life. Part of my duty in having this disease is to help my kids understand that and to not be too afraid of it. I am hopeful this will help them when their and their loved ones time comes.
Aloha
Tom
Deb, Stann, Emily, Libby, Thomas - Your situations in having to tell young children is one I am so glad I was spared. Readers of The Beacon in a similar situation can learn so much from your sharing of how you have have and are handling it. You all seem to have have one thing in common: a positive outlook despite the extra burden you have, which is so admirable.
Christel - Our situation is similar, as has been our approach in dealing with older children. I like your advice of living life to the fullest, although, with my son being a freshman in college, I might have to have a more detailed discussion about living a "full life"!
Great column. Like you, I felt very strongly about telling my 14 year old only daughter that I had myeloma. That was 3 years ago. The hardest part was the few days leading to that, as I wanted to do this at the end of the school week and have the weekend free. I had practiced my news delivery to include the facts while giving a positive spin and examples of friends, other parents, and acquaintances who had cancer and survived. I had written material with me. That being said, she fell apart and cried, so I did.
Then resumed the talk. I promised her she would always be the first one to know, and she was when I had a recurrence one year after the conditioning chemo + high dose chemo and stem cell transplant . At my recurrence diagnosis, I did the Whistler Gran Fondo, a 122 km cycling event from Vancouver to Whistler, which confirmed to her that, while I needed to start treatment, I was not dying. She did not react much to the recurrence news, as I was asymptomatic.
I have kept her informed of my monthly results, showed her the graphs of my improvement. 19 cycles later, we had a celebration night 2 weeks ago when it was confirmed I had a stringent complete response.
She is 17, graduating this year, and heading to university. She wants to go away and we have always said she should plan her life and we would follow (my husband is retired). I read her scholarship applications (she shows them to me) and, to the question about a difficult time in her life, she talks about the experience with her mom's cancer. I like what I read. It has a positive spin on it. She knows and says it is incurable. Yet she says I did not lose my hair! I did. So I asked her why she said that. She dreaded that when we talked about this before the melphalan. She says it did not last and my hair grew back and better than before, so a non event! My stem cell transplant was as outpatient, so she witnessed everything over 2 weeks, but I did not develop any complications, so she writes that I was not sick but she learned to wash hands as soon as she enters the house and continues to this day.
Kids have their way of processing news and events. I felt I wanted her to have the facts and ensure I built the trust that we would not hide anything from her. So far it seems to have worked for us.
Steve, I have been following your journey and have learned a lot from you. Some of your specific words worked well for me yesterday. I am Day 11 of my auto transplant and my 21 year old daughter was visiting me between her classes and research job at University of Washington. I held her hands and told her that, while parts of this road have been rough, she doesn't need to worry about losing her Mom anytime soon. I promised her that, when it was time to worry, I will tell her, and she seemed relieved.
I am just starting to feel a little better after this ASCT, but have more trepidation heading into the mini allo in a month.
Thank you for continuing to share your story,
Cindy
Great article Steve.
Nicole - Your sharing of participating in the cycling event shows what a contradiction this disease can be, as not many would think that one with an incurable disease could cycle 122 km!
You reading your daughter's scholarship application reminds me of my son's last home varsity football game. On the last game, dads of senior players are invited into the locker room for pre-game. All of the senior dads sit in a circle of chairs with their sons standing behind them and the rest of the team and coaches around them. Each player then has the opportunity to say something about their dad. Needless to say, it is very emotional, one of the neatest things I have ever been involved in. What made it so special for me is that my son spoke of how my battle with myeloma had inspired him to compete and fight against anything he encountered that year.
That was the best thing I have heard in regards to this myeloma experience, as my wife, who was diagnosed with melanoma shortly after my myeloma diagnosis, and I have hoped that our kids will see through our battles with cancer that just about anything can be overcome with the proper approach.
Good luck with being an empty nester - it took my wife and I a while to get used to it!
Cindy - I am happy to hear that you have benefited from me sharing my experiences. I hope that your auto continues to go well, as does the upcoming allo. I believe you are spot on in telling your daughter she doesn't need to worry about losing her mom any time soon with all the treatments that are in the pipeline for multiple myeloma.
Dr. Hofmeister - Thank you for the kind comment, and I will see you in a couple of weeks.
Good article Steve. I was diagnosed in 2008 at age 45. My kids were 10, 8, 6 and 4 at the time, so they have pretty much grown up with my myeloma. We homeschool our kids, so they traveled with me to Salt Lake City for my first tandem autologus stem cell transplants. They saw the ups and downs of that process, as well as the impact that maintenance therapy back home in San Antonio, TX had after the transplants.
I had a relapse in December 2013, so we went to the University of Iowa (I'm a Dr. Guido Tricot high-risk patient) for a second tandem ASCT. Again, the kids went along, got to see all the snow they could handle, but also were closely involved in the "healing" process again.
We haven't hidden anything about the seriousness and potential outcome of my disease. And, yes, the thought of missing out on all of those moments down the road – the graduations, the weddings, the grandchildren – is something that weighs heavily on me at times.
The kids are now 16, 14, 12 and 10. They know the distinction between "incurable" and "manageable," and I've heard them explain my condition to their friends. They position things optimistically when they tell others, as do I, but they know that there is a possibility that things can take a turn for the worse at some point.
Such wise perspectives from such courageous families! I think most of what we face in our lives are in fact opportunities to learn and teach others. Coping with the unexpected and devastating events and rising above them the best we can. When the seemingly impossible circumstances occur, we gain knowledge to lead ourselves and have the support of others to lean on. "There's no place like home" ...
Thanks to all, Great job Steve!
Glenn - Wow, I can't imagine going through two tandem autos. I would say that the fact that your kids are capable of positioning things optimistically at their ages is proof that you have done a lot of things right with them.
Kathryn - I couldn't have said it better than your comment of "Such wise perspectives from such courageous families!". The responses to my column – the shared experiences – are not just interesting, but inspirational. Your phrase "learn and teach others" is so accurate. I know that I am more of a learner than a teacher when it comes to mm, and most of what I learn comes from my daily reading of The Beacon.
Getting a diagnosis in November 2013 by accident on a routine MRI totally changed my life in an hour's time. For the next 4 to 6 months, my wife and I went through the whole gamut of emotions, started doing the proverbial preparations, and having family discussions. I even spent time writing all my wishes down in a farewell format with final instructions if the end came unexpectedly. Hey, I had never had an ASCT before, so it was scary and what could happen. You just never know.
Now, 2 months post ASCT number 2, I am doing extremely well. There are still no guarantees, but lots of hope. As I sat in my myeloma specialists waiting room, I started up a conversation with an African-American gentleman. I figured he was a caregiver, a son, or just gave someone a ride to the doctors. After a short period of talking, I could tell that he was a patient. He shared that he, too, had multiple myeloma. He looked to be a couple years older than me, maybe 63, looked to be in great shape, good spirits, very positive attitude, and I could tell had lots of faith. I naturally asked, so when did you get your dreaded diagnosis? He blew me away when he said, "1997, my friend." You got to be kidding me. That's 18 years ago ... and many years before the novel drugs and treatments.
There immediately came over me a sense that there is HOPE. I will still do the family time, the preparations needed, make new memories with my spouse and family of course, but now I have a renewed hope for the future.
Randy - I too have a great sense of hope based on a similar encounter with a long time survivor. Mine occurred during my last Zometa treatment before my stem cell transplant. In the cubicle next to me an older gentleman was just wrapping up his treatment and he overheard my conversation with the nurse tending to me. He asked me if I was having a stem cell transplant and I told him I was. He wished me good luck and added that he hoped it was as successful as his had been. I asked him when he had had his transplant and he said in 1998, 16 years ago and that this was his first relapse! Since then, I have paid little attention to prognosis predictions. I hope things continue to go well in your recovery from your second ASCT.
Dear Mr. Mohr,
I always love reading your articles and keep looking forward to them. And here you have really hit it home by expressing just exactly what and how a family goes through while dealing with this disease.
My father got diagnosed with myeloma last September and got his induction therapy, to which he thankfully was very responsive. He had his ASCT on February 11 and is recovering from it at a satisfactory pace (touch wood).
As regards his breaking the news to me, I am a 26 year old lawyer, and all the while during his initial tests was doing all the research that I could, so the news was not really news to me, but I must acknowledge the courage and the comfort with which Papa told me about his diagnosis, nerves of steel (touch wood). Crestfallen though I was, I could not help but reflect Papa's courage, and, even though I love him as much as my own life – perhaps more – I did not cry when I first heard the dread m word from Papa. We are in it together, and we will go through it together.
Thanks for writing the article and please keep writing.
Upasana
India
Thanks for the thoughtful column, Steve. It shows what a close family you are and that is a blessing for all of you!
I haven't heard of anyone else having the experience I did about telling my young adult children, aged 24 and 26 at the time. I did not have to tell them, since they had already figured out i had MM before I did. it was me who was in denial actually.
My older daughter is a nurse and was working in the same hospital where I had my stem cell transplant. She would visit or call me every day when I was in the midst of difficult treatments. I realized that she was checking up on me, and being my caregiver at that time!
My younger daughter, a medical student at the time, actually called my diagnosis, when my family doctor was still puzzled about it. Since she was in a study unit about the health of bones at the time, she had learned that, in cases of osteopenia, tests should be done to rule out multiple myeloma (SPEP, SFLC). On her suggestion, we got the tests done, and I was soon referred to my current hematological oncologist, who took it from there with my treatments. So it was she and my husband, a family physician, who determined that I had myeloma, and the oncologist confirmed the diagnosis.
How did my children cope with all of this, that their mother had (has) cancer? I am glad that they are old enough to handle it emotionally, although I try not to obsess about it too much with them, lest it spoil their enjoyment of life and our time together. Usually now, five and a half years past diagnosis, and doing quite well, this is not too much of a problem though.
Upasana - Thank you for your kind comments. Being "in it together and going it through it together" is a great approach and one that I have certainly benefited from with the support of my family.
Nancy - Yours certainly is a unique experience, and having two daughters in the medical profession must be comforting. As I move further away from my initial diagnosis, the reality of living with mm has become the new normal for our family, and it is amazing how few problems or disruptions there is. Of course, that can change suddenly - hopefully, it won't for quite some time.
Mr. Mohr,
I came across your essay "How And What Do We Tell Our Children" during a cub scouts awards ceremony this evening. Mr. Mohr, I've been asking myself that same question every day for four years. I still haven't figured it out.
I did not start having children until my mid thirties. And, if I knew then what I know now, I would not have had any. My youngest was only five. I received an early morning phone call from the doctor. She was so sweet. She calmly told me I either had myeloma, lymphoma, or ... I innocently asked if any of them were malignant. She said they all were. Then I drove my son to elementary school to be evaluated for kindergarten. It was surreal. My son was starting kindergarten in three months, and I might not be around to see it. Mr. Mohr, he has accepted my illness because that's all he remembers. To him it is the norm. He liked to play with my HEPA mask and roll around the house in my wheelchair. He noticed when my eyebrows "were turning gray" and he was glad when I got my port removed. But he never shied away from me or withheld his love. I told him I was sick. That the medicine I had to take was going to make me better, but it was also going to make me sick.
The tragedy has been with my older son, who was just shy of eight when I was diagnosed. He used denial as a coping mechanism and started to push me away. It's been four years and he continues. He avoids touching, speaking, and looking at me. If he does acknowledge me, it's usually to tell me I'm ugly or to slam the door in my face. I've been advised by his pediatrician to "go at his pace" and not push myself on him. I've been in and out the hospital since my transplant in June 2013, for neutropenic fever and thrombocytopenia. I looked so horrific when I had zero platelets he finally asked me if I was going to die. I was so unprepared by his question, I said the only thing I could think of. "Yes, but not anytime soon." I'm hopeful I've got at least another four years. That would make him 16, and, like you said, more capable of understanding the implications of his mom having myeloma.
As of today, I have nothing to say to either of the boys about my myeloma. One doesn't ask, and the other doesn't want to know. I'm just waiting for when the time is right. In the meantime, I've tried writing letters and poetry. They always seem to end up in the trash. They're just too dark and personal. So I'm taking a more light-hearted approach. I've started to purchase birthday, graduation, house warming gifts. I put great effort into wrapping them. I've found beautiful and whimsical boxes that are also durable, able to stand the test of time. I spend a lot of time at book stores and thrift shops, searching for books that I believe would enhance their knowledge of the world and themselves. To view life through many different lenses. My thought is, I can communicate with them through the books. It helps me cope, and it gives me hope that, one day, they will understand how much I loved them and thought about them. That I was thoughtful enough to buy hardbacks.
Thank you for bringing this topic to the table. I'm interested to see what other readers have to say. My name is Jennifer. I live in the suburbs in a gated community where too much emphasis is put on conformity and excellence and Botox. "Maybe I should just move to Australia."
Steve, Well done ... An important topic.
I was 55 when I was diagnosed in January, 2003 after surgery to remove a plasmacytoma from my chest, alerting my kids – who were 12 and 14 – that something serious was up. New drugs were just being introduced, and have kept me around longer than anticipated at diagnosis. That new drugs and therapies continue to roll out is a real positive for those more recently diagnosed.
Early on, my wife and I sat with my son and daughter and explained in as much detail as they wanted what mm meant and what the prognosis might be. In 2003, ten-year survival was an outer limit, but I used that as guidance for them. We took them to meet the doctors and the nurses (nurses moved right in and spoke to them in just the right way). I was having radiation treatments early on and the kids came in to observe the treatment standing behind the glass window with one of the techs. The techs played music during the treatments and this day cranked up volume to a number by The Killers, which the kids thought was cool.
I had a stem cell transplant in September, 2012. When I returned home, my son and daughter became my caretakers and stayed with me, preparing meals and cleaning my place for the next three or four months.
It hasn't been easy for them and I would rather have spent the time biking and rock climbing with them, but they grew through the experience and we are closer now than we were before. So there is that.
Blessings to all of you ...
Jennifer - You certainly have a difficult situation to deal with as your oldest son wrestles with your condition. I hope that, as time passes, your condition improves, and his attitude towards you softens. Purchasing gifts that will stand the test of time is a great idea, and I am sure one they will appreciate.
Stephen - You surviving mm for 12 years is proof that the prognosis predictions are not etched in stone in terms of their accuracy and gives those of us newly diagnosed hope. You are blessed with wonderful children!
Thanks for the article, Steve, and to all the Beacon contributors for the extremely helpful articles and comments. This one hit especially close to home because my husband and I were completely flummoxed as to how to break the news to our young kids that their dad had incurable cancer.
The cancer center where my husband is being treated has a psychiatry practice within their children's cancer department. Our myeloma specialist recommended that we speak with one of these psychiatrists to help us determine how to tackle the issue with our three kids who are 10, 10 and 6. During the wait period between diagnosis and our meeting with the psychiatrist, we had to tell the kids something because they could tell something was amiss and that grandparents were around a lot while my husband and I went to see doctors. We said that the doctors were doing tests to figure out what was wrong with daddy's hip (the only symptom that presented pre-diagnosis was extreme hip pain) and that we would tell them when we find out (white lie).
The psychiatrist explained that the kids will likely follow our cues and if we are stressed and anxious, that is exactly what they will be, but if we can manage to stay positive and relaxed, that will help a lot in keeping the normalcy for their sakes. She also said that if we are not the type of family to call a family meeting, then that is not how we should present this news - the more we can keep to our typical routines, the easier it will be on everyone. We took all her advice and came home to deliver the news.
We decided to take baby steps and build on the limited knowledge we start out with as we move forward with treatment. At the beginning we localized the issue to his hip. We explained that now we know what is making daddy's hip hurt and it is a disease called multiple myeloma. Unlike a broken bone, you can't just put a cast on it to make it better. Dad will have to take medicine and it will take a long time but the medicine will fix his hip. They asked one or two random questions but nothing to do with dying, life expectancy, etc. We felt that this is appropriate for their age and that since his prognosis is not so short term, they will grow with his disease and we will fill them in on more as they are prepared to handle it. Basically to them at the time, the disease meant dad was on crutches and could not play sports with them or be their jungle gym. They started calling his disease "multiple annoya."
Over the 3 1/2 months since diagnosis, they have asked and learned more. As we approach his ASCT, we have talked about daddy going to the hospital for a couple weeks and being very sick when he comes home for awhile. They are dealing very well and have asked some harder questions along the way. We are honest without giving more information than they ask for.
At my husband's myeloma nurse's suggestion, they are creating art to surprise him with decorations for his hospital room. I loved this idea which gives them something they can do to help, especially because they won't be able to visit in the hospital (the minimum age is 12 years old) but we plan to FaceTime / Skype.
Jennifer - My heart breaks for your situation. Have you tried a therapist for your older son? Or maybe even for you to get advice on how best to communicate with him? I can't claim to know anything about 12 year old boys and I imagine it is not easy even without the heavy issue of a mom with cancer.
I was 39 when I was diagnosed. My children were 6 and 4, and a 3 month old baby. Sometimes (3 yrs later) it is still hard to think about "having to live with the fact that the odds are against your seeing your kids go on their first date", but mostly I ignore that aspect - and anyway, treatment is such that actually the chances are I will still be here in 5-10 years time.
I guess my kids have known about my "sore bones" for as long as they can remember. They know about my weird medications. They know about my crappy immune system. I have friends who lost parents when they were young, and while it was, I'm sure, utterly traumatic, they are balanced happy people (and parents themselves). So I don't worry for my kids at all really. They will be OK. It will be OK. And anyway, it will be.
Wow, what a great response. I posted this question not long ago. I did finally tell my 12-year-old twins a few weeks ago. I was diagnosed with smoldering multiple myeloma November 2013, but, under the new guidelines from November 2014, I started treatment. Of course, all the snow days were on my treatment days, so I had to make excuses. I decided enough is enough and I owe them the truth. It was a Sunday afternoon and I called them both to the family room. At first, they thought they were in trouble (perfect angels!). I guess being 12, it kind of went over their heads.
This is the funny part. That night, I was going to order JJ Hardy jerseys (Hardy is a shortstop for the Orioles) because we had tickets to an autograph session. I told my daughter (my son couldn't care less) that we will order 2 jerseys – one for our basement, and one to sell at her softball team's silent auction. That night, she was very quiet (unlike her), and I asked her if she was ok and if she had any questions about what we talked about. She said no. The next morning, same thing. She looked at me about to cry. I was mad at myself for telling her about my cancer on a Sunday. Should have given her a couple days to get used to the idea. I finally asked her to please open up and tell me what she is thinking so she could feel better and have a good day at school. She said, "I wanted a JJ Hardy jersey for myself!" OMG!!
Great article Steve !
Mine were all adults and worked or working in a hospital setting along with my wife. It was still a shock to them, but after time everything is pretty much back to normal. My grandkids are too young to understand -- 5, 4 and 2. They realize that grandpa is better and can play with them again, and that's all that counts.
All 3 have come with us on check-ups. Not to many questions yet, but all is good.
EF11 - I couldn't agree more with the psychiatrist who said our kids will follow our cues. I think this is true regardless of their age. Good luck with the upcoming ASCT!
Alex - I like your blunt, frank approach. I know it is one of the most over-used cliches today, but my philosophy has been, "It is what it is, let's move on."
Gardengirl - You are right, some great responses. Sounds to me like you have two normal, well adjusted kids!
Jack - Thanks for the compliment. You obviously are in good hands with so many medical professionals as your caregivers.
Tough subject and something that was and still is difficult to deal with. My kids were 4 and 7 years old when I diagnosed 12 years ago. My wife and I have have always been very open and honest with our kids and this has led to some difficult moments. When we first told my son Zack, he was only 7 and his initial responses were heartbreaking, to say the least. He asked "if he could get cancer by being around me" and "was there something he did that caused me to get sick".
While it was originally tough to deal with when they were small, hugs and time spent with them usually made things better, but this doesn't work anymore. I have been dealing with multiple myeloma for over 12 years now, and my kids are now 16 and 19. I have been incredibly blessed to see my kids grow up, but I think it is now more difficult to deal with in many ways then it was when they were small. I recently had my second transplant in August, and my daughter – now 17 – pointed out that "you have had cancer my entire life." They are both older now, but they also have a much better understanding about my cancer and what I have to deal with.
I guess my point is, it never was or is a subject that it easy to deal with. In a strange way, multiple myeloma has helped my kids grow up to become who they are. They understand that nothing is guaranteed and every day is a truly a gift. So, while I wish they had never had to deal with multiple myeloma at all, I know that, in some way, it has helped them become the young adults they are.
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