Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group

Talking to my 4 yr old boy about my cancer

Hello, I have had SS for a bit over 4 years (just before Graham was born), and metastatic SS for a bit over 3 years now. I fear I have limited time left and have still not had a conversation with my son about my Cancer. My wife really dreads the idea about it, and fears it will do more harm than good, but I feel that it is very important. I'm seeing a counselor who strongly recommends having the conversation soon as well. Any advice on this would be greatly appreciated.

My daughter was 5 and my other was 7 in 2008 when Paul was diagnosed. We sat them down and was up front with them with everything. We always promised we would be truthful with them no matter what. We told them they could ask us anything they wanted and of course they asked if he was gonna die. It's never easy to have this conversation but kids no matter what age pick up on when anyone is sad in the house or sick or stressed. Kids are so smart. I can't tell you if you should or shouldn't cause this is your family and have to make the decision. This is what we did for our family and it helped them understand more and cherish their dad more also. When my husband passed 3 weeks ago they knew what was going on and I am glad they knew and not left with unanswered questions or mad at me for not talking to them about it. Hope this helps? My prayers are with your family, I had my husband do those books that records your voice when reading the books? He did that for them. I havent given them the books yet but when I do they will appreciate it and know they can hear his voice anytime they want. You can do a journal of letters for your son if something was to happen he will always have that or do video's. Paul wasnt able to do those but happy he did the books for the girls.


My son was also 4 when I had this conversation with him (this was when my first metastases showed up). I don't know what's the best way to introduce the subject.

Here is what I told him and how he reacted: I explained that our bodies are made of cells and that our cells are like our little workers. Different cells in our body do different jobs. For example, some fight foreign invaders like viruses or bacteria. There's some good video for kids about how the body works here:

Then I told him, some of my cells are bad workers and instead of working to keep my body healthy, there are trying to destroy my body. My doctor is trying to get rid of these bad cells but they are very good at hiding and they may kill me eventually. I told him that if and when I die, I won't be able to take care of him but that grandma will come to help. My son asked if he also has bad cells, whether the same thing will happen to him. And whether he is going to die too. And what happens after you die and so on.

One of my friend, Jeremy, lost his battle with SS one year ago and he left 2 boys (a 2-year-old and a 5-year-old). I went to visit his parents this summer and they told me the boys were doing good. The oldest one talks to his dad when he visits his grave. He also talks a lot about the great-grandpa who passed away long before he was born. That's because Jeremy introduced the idea of his death by talking about his own grandpa's death (Jeremy was very close to his grandpa and was a teenager when he lost him). It seems that he managed to share a healthy outlook on death with his son.

I am so sorry to hear about your Illness. my son had SS and passed away in march 2011 at the age of 28. Do you have it in your lungs? The best thing is to tell your son the truth. He probably knows everything already and it is much scarier for children when they are kept in the dark. Children are amazing they have an inner spiritual understanding. Tell him the truth and let him ask questions. If you know God reassure him with the knowledge that God will take care of you and your family. This world is not all there is. Explain to him that you will see each other in heaven one day.God Bless.

Synovial Mom

Our kids are a bit older but we have been very open with all information. Kids are smart and pick up things anyway so I think your better off openly communicating with them. You know your child best and once you start communicating the information will just start flowing. Our experience is that they had lots of questions and these continue to pop up from time to time.

So go for it.. start the conversation.

Good luck


Thanks so much for sharing Drake. Sounds like you are a terrific father.

This breaks my heart....My husband has been dealing with a cardiac SS for 18 months now and we have a soon to be 4 year old. My husband has been put on hospice and also has "limited time left".

We were advised to contact a group called Wonders and Worries,

I'm not sure if you have something like this in your area, but I have contacted them and we have an appointment to meet and they can guide us the parents and the child- They had said they offer age appropriate books and toys to deal with the issue.

I have yet to go, but I am really looking for help as well with this :( GL & take care <3


Honey I am so sorry about your hubby. I just went through hospice with my husband a month ago. If you want to talk anytime just email me. I pray and pray no one has to go through this, Your all in out prayers.


HI Drake,

Just wanted to share the books that were given to us--Some are a little above his level, but I sorta skimmed, but overall a good list of books--

  1. "When Pete's Dad got sick"
  2. Lifetimes
  3. Gentle Willow
  4. I miss you
  5. "Saying Goodbye to Daddy by Judith Vigna
  6. "Badger's Parting Gifts" by Susan Varely

Thank you! I find this list very helpful!