[Beacon Staff]

Weekly Poll – Telling Young Children About Your Myeloma

by Beacon Staff on Wed Mar 07, 2012 1:29 pm

This week’s question is about when and how you told your young children about your multiple myeloma diagnosis.

A few clarifications:

First, we’ll define young children as those under 18.

Second, if you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.

In the space below, please share when and how you told your young children about your diagnosis. For instance, did you tell them right away or wait until a certain point in your treatment regimen? Please also include your children’s ages and how you explained your diagnosis to them. If you had to do it over again, would you do it the same way or would you do anything differently? Your comments may be very helpful to others who were recently diagnosed with myeloma and are considering when and how to tell their young children.

[Art]

Re: Weekly Poll – Telling Young Children About Your Myeloma

by Art on Wed Mar 07, 2012 3:39 pm

It was tough to tell them. But they knew something was going on. They could see their Mother was upset about something. They overheard us talking about me having Dr appts. And, I left a Browser I had minimized open and my oldest (14) looked at it and asked why I was looking at a Bio. of a Cancer Doctor. We kind of held them off for a while until I had a firm dx and I had more info. The youngest (10) asked a lot of questions and my oldest has not said much about it. My middle child (12) asked her mom questions but will not ask me. I even tried to talk to her and ask her what questions she had but she just does not want to discuss it with Me. So they are all dealing with it in their own way. Time will tell and Heal
Blessings to All
Art

Last edited by Art on Wed Mar 07, 2012 5:34 pm, edited 1 time in total.

[rumnting]

Re: Weekly Poll – Telling Young Children About Your Myeloma

by rumnting on Wed Mar 07, 2012 5:01 pm

Our kids were 16 and 19. We were waiting to tell them until we knew the treatment plan. My husband was also in no hurry for the 16 y.o. to find out, as he knew word would then travel quickly. He is a physician, and he was worried it would hurt his practice if patients knew. Before we told them, my daughter happened to look at my emails "sent". She was looking for an email that I had sent her coach about something. Instead she found the email I had sent to my brother telling what all the Mayo doctors had had to say, that it was stage II, and considered high risk. She then called me on my cell and said, "when were you going to tell me that Dad has cancer?" It was a very bad way for her to find out. For the first few months, she didn't want anybody to know about his diagnosis. When you are in high school you don't want to be thought of as different, or pitied. This was all last May. Tom had his transplant in October and is doing very well. My now 20 y.o. son deals with it by just never talking about it. The now 17 y.o. daughter now pretty much just takes it in stride. She has grown up by leaps and bounds this last 10 months. It's a wonderful thing to see, but I hate that it had to happen in this way.

[josevasco58@gmail.com]

Re: Weekly Poll – Telling Young Children About Your Myeloma

by josevasco58@gmail.com on Thu Mar 08, 2012 2:22 pm

I was 44 when my multiple myeloma was finallty diagnosed. I was a single parent and my daughter was 8 years old. This was 10 years ago, the median age at diagnosis seemed to be much higher according to the physicians that I spoke to.While no one could predict thje clinical course of the multiple myeloma, when I asked for a time frame of survival, the standard at my stage was 18 months.
Fortunately my GP at the time had young children of his own, and was able to talk creatively and sensitively with my daughter in an age-appropriate way about the diagnosis. Gilda's club provided a children's support group. I tried to maintain her daily routine and attend her soccer/softball/drama activites and answer questions as they emerged. Teachers and friends were supportive and caring.
As any multiple myeloma patient knows, it's not easy coping with the physical and mental impact of the disease and medications , insurance and employment issues,while having the energy to be fully present for your children.
It's a delicate line between being honest while not offering more information than a child can handle at different stages, and not being able to give the definitive reassurance that any kid wants and a parent wants to give.
I've been very fortunate, encountering partial jaw removal due to osteonecrosis, facial shingles and various hospitalizations, but expect to see my daughter graduate from high school this June. She still worries, but as she gets older I'm able to explain the treatments and issues more fully.

[meeshymeesh]

Re: Weekly Poll – Telling Young Children About Your Myeloma

by meeshymeesh on Sat Mar 10, 2012 5:22 pm

I was 40 years old married with 2 children aged 9 and 4 when I was dx with smoldering multiple myeloma in march 2009.
At this point I did not feel the need to tell them as I was fine just tired. I had to go to the hospital for blood tests every 3 months but that was scheduled in the mornings when they were at school.
I started chemo RVD, VCD in Feb 2011
It was not until Sept 2010. When I had to be admitted to hospital to do the VDT-PACE that my husband and I told them.
We used the words Cancer and Multiple Myeloma and explained that the drs would have to give me very strong Meds which would make me sick, hair fall out and very tired.
They both asked a few questions but seemed fine.
I have worked so hard to keep their daily routine as normal as possible.
The first hospital admission was close to home so they could come and visit in between their afternoon activities or before bed.
In Dec 2011 I had my 1st auto transplant as an inpatient as Moffitt in Tampa which is 4 hours away from home. My dad fly over from England to be my caregiver so that the kids could stay in the comfort and familiarity of their home with Daddy. They came up to visit once school was on Christmas vacation and we all spent Christmas together.
Today, March 2012 I am sitting in Moffitt again for my 2nd transplant (tandem).
My kids have just started spring break and were happy to stay with daddy again at home and be with their friends. I am here by myself this time but I Skype and call the kids everyday.
Personally I think MY kids worry less about Mom when they are living their normal life, school, their friends, their activities BUT I know it is different for everyone.
Great to read other posts and best wishes to all.

[Art]

Re: Weekly Poll – Telling Young Children About Your Myeloma

by Art on Sat Mar 10, 2012 8:01 pm

Good Luck Meeshymeesh!!

[GaryH]

Re: Weekly Poll – Telling Young Children About Your Myeloma

by GaryH on Tue Mar 13, 2012 7:52 pm

I told my kids as soon as they came to visit me in the hospital after my diagnoses. They knew something was wrong with me & i didn't want to lie to them. I was sensitive to their feelings & asked them for their help, so that they could feel a little empowered. They were 9, 12, & 15 at the time. I also told them that as soon as i heard any about any changes they would be the first to know. This has worked for them & i think they appreciate it, although it's been hard for them.
When i was in for my SCT, i let them pull the rest of my hair out using Hospital duct tape & tried to turn it into fun thing! They liked that. They have adapted, & it has affected them but i think they turned out great.