This topic contains 12 replies, has 6 voices, and was last updated by 
sange43 9 years, 8 months ago.
Hi, I’m new to posting but have read posts from time to time. Briefly my husband has MM he is 42 diagnosed in August 2012 has had 7 months of chemo and stem cell transplant, he was able to be at as near a remission as possible and was given maintenance treatment which he is on now. Sadly his para protein levels are rising albeit slowly, so it is watch and wait for him, if it goes up to 5 he may come off the trail and start more chemo etc etc. so we decided to tell the kids as they see dad well and after 2 broken vertebrae is now playing football with the kids, bike riding etc. we have a 9 & 7 year old. I had built this conversation up in my head over and over, and felt physically sick telling them, but did it as a retrospective thing and told them , it may come back but no one knows when, they were bloody fantastic and so black and white, I am so relieved I have told them, as now when Kev does have to have chemo we can be open and honest and not talk in corners. I really wanted to post in case anyone was debating whether to tell their kids or not….I recommend you do, I feel like a weight has been lifted for them and a piece of the jigsaw fits together for them. We bought a myeloma buddy and they hold the buddy if they want to talk or are feeling upset….so far they haven’t touched it.
thanks for listening Lisa.
Hi Lisa
Thank you so much for posting this. It is very relevant for my situation. I was diagnosed just over 3 years ago, aged 42. My daughter was 4 at the time and in her first few weeks of Infant school. We have never told her anything. I was fortunate to get through CTD with minimal side effects. She was too young to even notice why I’d stopped working. However, not telling her has hung over mine and my husband’s head. It increases my levels of anxiety. My daughter is almost 8 now and moving into year 4 of junior school in September. I’ve been seeing a psychologist who recommended that we tell her now, whilst I am “well”. We had planned to do this next week after a hospital check-up (touch wood, everything will be fine). However, I’ve been having doubts, particularly as a close friend has questioned the wisdom of us telling her and worrying her. Your post is just what I needed to read – thank you!
Best wishes to you and your family.
Alice xx
Hi
when my husband was diagnosed 2 years ago at 46 our children were 10 and 7. He was diagnosed in a rather dramatic fashion when he snapped his femur. Clearly we had to tell them something.
They had previously read the children’s book “Germs” featuring Marvellous Myrtle and her immune system so knew all about the soldiers of the immune system fighting infections etc.
We told the children that unfortunately Daddy’s soldiers were all rubbish, so he had to have treatment firstly to get rid of what was making them rubbish, then we had to get the best troops out, clear out the rest, and then get the best back in to train the new recruits. (chemo followed by auto SCT).
this worked for a while and the chidlren saw daddy home and well and accepted it completely.
Unfortunately it came back last year and he had more chemo. We told them he was still having treatment for wonky blood. But by then our daughter now 12 had heard myeloma and cancer and so we discussed it with her and explained that yes it is a cancer. Daddy is having treatment, and as she can see, Daddy is ok at the moment.
She hasn’t asked about the future. I think to small children, Christmas is a long long way away, so trying to discuss anything further than next year is really pointless worrying. They know daddy is ok at the moment, they know he is getting treatment. If they ask, we tell, but we do not give them more infomation than we think they can handle.
The beautiful upshot was that our amazing daughter stood in front of her whole class at school and said “my daddy has cancer. sometimes i may get upset about it, but if i do, i’m not beibng a drama queen, and you can come and ask me about it”. my heart almost burst when i heard about it.
Our son is too young and involved in his own life and sweets and friends to take much notice, whcih is exactly as we think it should be.
I would agree, tell your children what they need to know. whispering in corners will just make them worry.
x
I am so pleased that this has helped you Alice, it’s a huge burden. Kev bought the book Kelsey and the yellow kite, from the information day. It was kind of a back up in case my explanation was not that great ( I told them on my own, it seemed less serious that way) They have never asked to read it, I suspect that if or when Kev does have to start the chemo again, more questions will arise, so it’s good to know we have that as back up. Our situation was actually more sensitive as kevs best friend died of melanoma within the last month, so the kids knew about cancer related deaths, but our daughter (9) has a best friend who’s mam is 5 years on from non Hodgkin’s lymphoma, so she has positive too. Who knows how they will react and hindsight is a marvelous thing. However telling the truth and saying the dreaded c word seems harsh and some people see it as not “protecting” the kids, but it’s the awful reality and whatever age we are we have to face it. I am positive that in the future our kids will be grateful they were included in the family good and bad times.
Fiona I’m glad you shared, kudos to your daughter, how brave she is, but again proves how resilient kids are. My son too is too young, he just wants to swap his match attacks, he is going into year 3, so younger than your daughter Alice and girls seem to absorb more. However you tell her, she will appreciate it in the long run.
Good luck and please feel free to contact before or after the event if you need to.
Lisa x
Oddly, the biggest thing we have had to protect our children from us other people’s reactions, especially to the word cancer. Ours and older generations feel very emotional about it. We nearly all react negatively and fearfully to it. Kids don’t, or won’t if you lead the way.
For what it’s worth my advice is to stay factual, give as much information as you think they can handle and keep communicating but don’t push it.
Hi,
We have adopted a “need to know” attitude with our daughter who is now 7. Last year we bought the Kelsy book which she read and refers to sometimes. The illness has affected her, especially when I went into hospital for a few weeks at a time and she keeps asking me or rather telling me to be careful so I don’t break any bones. On the whole she has accepted it but no matter what you say or how you try to deal with it, it will affect them. We try and cushion her as much as possible whilst also trying to be honest. For example we tell her I have to go to hospital for blood tests but reassure her that I am coming back. Her school teacher is up to speed on things and keeps an eye on her. In fact when I had my SCT, our daughter was updating the teacher daily on my condition. There is no easy way or right or wrong way to tell them, I believe it is something every parent has to decide for themselves as only they can truly know their child.
Hi Lisa,
I was diagnosed last year (nearly 12 months ago) and I was quite bad from the off with collapsed vertebrae which happened whilst we were on holiday abroad. In this respect, we really didn’t have a choice because they knew something was up. My kids are older and were 15 and 12 at the time and we decided to tell them everything from the very beginning, however, we did debate at the time what they should know so we kept it simple. The kids have been great and the Schools were very supportive as well because we informed them in case they saw in any changes in their behaviour. Luckily for us, they have handled it really well and have just got on with things. My Son wears his Orange wrist band 24/7 in support of Myeloma and never takes it off even when he plays Rugby or takes a shower!
I believe that as long as the kids are old enough that they should be told, however, I can fully understand anyone’s right and need to protect their kids from the possible grief and upset that may come with that difficult conversation.
Kind Regards
Scott
Hi Scott
That’s spookily similar to kevs story except we were in Chester on holiday, he was in pain before the holiday but we went anyway. Whilst in the hotel he slipped on a step and was in agony, so was taken to the hospital and was told to see his GP at home. 2 broken vertebrae and an array of small fractures, told MM only after an amazing GP had the foresight to do the blood test. Kids have always just thought it was because he fell over and “dad has a bad back”. Since telling them their behaviour has been no worse than any other 7 and 9 year old pushing boundaries. Our son the youngest , bless him thought I’d said my loma! And so now refers to daddies aches and pains as ” is that your loma daddy!” They have never asked any questions, that’s probably because they trust us to tell them if things got worse. Support from neighbours and school is amazing. So thankfully for us it worked out “for the good”. Our son would love the wrist band but they don’t come small enough. Both kids take the buddy to bed every night.
I agree it’s a personal choice…and one that is incredibly hard to make. To tell or not to tell. I just wanted to let people know our story.
P.s. Kev is out on his bike and been out for 2 hours….loving life.
Lisa x
Lisa,
I too had pain, bad pain before we went away on Holiday and I even visited the Physio a few times hoping that they could cure me of what we thought was ‘muscle pain’! Little did I know then what was to come. It was the worst holiday I will ever have, however if I hadn’t of gone then I may not have been diagnosed as quickly as I could have been…my wife believes it was fate!
Although I am in remission and have been for a good while, I am just undergoing the RIC Allo to hopefully kick it into touch for a lengthy remission. I am transplant day +19 and so far things are going pretty well.
I too can’t wait to get over this procedure, get well again and then look forward to getting out and about and start to exercise. My back is really good now and for the first time in around 12 months I’m looking to the future and making plans with my family.
Kind Regards
Scott
Hi Scott
My husband is likely to have an allo shortly, I’d love to know of your experience so far and how you decided to go for it?
Thanks
Fiona
Hi Fiona,
I’m suprised at how well I feel actually with regards to the Allo, however, I believe its generally well tolerated especially in younger patients (I’m 42) and I think this this is largely due to the RIC (Reduced Intensity Conditioning) regime which I chose to have. Mine is the SEATTLE PROTOCOL and consists of 3 x days of Fludarabine (chemo I.V infusion) which only takes approx 30 mins each day then a days rest then TBI (total body irradation) which I had at Chrsities in the morning which took approx 30 mins and then infusion of my Donor Stem Cells in the afternoon back at Manchester Royal Infirmary. This was then followed by 4 x shots (every other day) of Methotrexate (chemo I.V) which takes 5 mins into the canular. However I only had 3 x shots. They cancelled the last one because I started with Mucosistis (sore mouth) and which I still have now but its much better than it was.
I am +20 days after transplant today and I have been seen as an outpatient right throughout my treatment including the conditiong regime, which has been great because I can rest at home and sleep in my own bed! As long as any symptoms are manageable, your temp is under control and you don’t feel too unwell as per the guidelines, then in my case they are happy for me to be an outpatient. I also live quite close to the Hospital (approx 10 miles) and can attend at short notice should any complications arise.
The issues I have had so far is tiredness from the TBI and Chemo, a little sickness occasionally (but that as been kept under control with anti sickness tablets), a couple of days of loose bowel movements and the sore mouth which I have probably had for a couple of weeks now but it seems to be subsiding. I just use the Difflam mouthwash prescribed a few times a day. The only other thing is that I picked up a cold and cough which I have since last Friday but again that seems to be getting better now.
I have no GvHD issues so far, however its early days yet so I’ll just see how it goes. My Doctor says that I may not get any GvHD until post 100 days but you never know, everyone is different and it could change at any time.
I got a MUD (matched unrelated donor) from the Anthony Nolan Charity because my Brother wasn’t a tissue type match. My Donor was a 10/10 tissue type match, CMV Negative (just like me) and even is the same blood type, although I believe the blood type match doesn’t mattter.
My Doctor/Consultant listed the many problems that could occur with this procedure to ensure that I was aware of the potential dangers when I signed the consent forms, however, as I say, luckily I have not been affected too much so far and expected to be worse than I am. I definitely feel better overall than I did when I had my Auto Transplant and I think that is largely down to the fact that the Chemo for the Allo works differently and is not as strong as the Melphalan (high dose chemo) used when I had my Auto so my Blood Counts have not crashed this time, hence the reason I feel ok.
I did get the offer of a Myeoblative or Full Allo and did what research I could. The Myeloma helpline was helpful and useful and they sent me some links to info on the web even though some of it was medical and difficult to understand in parts. In my case, I thought that it was possibly too risky to undertake the Full Allo because of the high mortality rates compared with the RIC Allo. Unfortunalty there is not a great deal of data available for Myeloma patients and Full Allo outcomes because it is quite rare in younger patients and only younger pateients can undertake the procedure. I beleive the cut off age is between 45 – 50 years old for Full Allo but I suppose that depends on the fitness of the patient.
I decided to have the RIC Allo in tandem with my original Auto (approx 4 – 6 months after) to hopefully get a lenghthy remission. I then will put my faith in Medical Science and the good work that Myeloma UK do to hopefully help find a solution longer term. I also believe that it is possible to have another Auto if/when I relapse in future and Who knows what treatments they will have to fight Myeloma over the next few years?
Sorry to harp a on a bit however I thought it best to give you the full story and although its a personal choice I wouldnt hesitate to opt again for the same. Just ensure that you get the correct information and take time to make your own informed decision. There is actually a facebook page for pateints who have had or considering Allogeneic Transplants run by a lady called ‘Jet Proppelled’ who has undergone the same procedure and has a wealth of knowledge compared to me who is a relative novice.
I hope this helps and all the best for the future.
Kind Regards
Scott
Hello
Thank you. That’s extremely helpful and I am so pleased you’re doing well, long may it continue.
I’ve found jet and her blog and Facebook page and read everything there.
Thanks again
When I was diagnosed in 2010 I didn’t hesitate to tell my daughter, who was 4 and a half at the time
We both felt it was important to be open and honest with her and to support her through any questions she had. I chose to use material from the cancer society specifically designed for speaking to a child when a parent has a diagnosis of cancer. My daughter now feels safe and confident in coming to me with any worries about my disease and understands that sometimes mommy cant do all the things she used to. I would strongly recommend that a child is told when a parent has a cancer diagnosis, but I would also
recommend that how it is done is age appropriate
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