suspected alveolar soft tissue sarcoma - 11 month old daughter

Hi moopants88 

Sorry to hear about your daughter and so young too. For us my wife has Leiomyosarcoma but totally get the how long the whole diagnosis bit and waiting for treatment and then waiting to find out if the treatment worked - it can be totally exhausting.

My wife was also told her cancer did not generally respond well to chemo but in her case it was the only treatment available and it turned out to work for her - we could not cure the cancer but it has now been stable for over 10 years and we live with cancer, my wife says "it is not bothering me and I am not bothering it".

I did find this page on the sarcoma uk web site and wonder if it might be helpful thinking about what treatments might be possible.

Our 19 year old son was recently diagnosed with a benign tumour in his brain - two lots of surgery and a full session of proton beam therapy later our life took something of a new left turn. He will be monitored now pretty much for the rest of his life.

<<hugs>>

Steve

Hi Steve 

Thanks for sharing your own experience with me. The sarcoma world feels very lonely particularly as my daughter is so young, I just can’t find anyone to talk about it to who understands. l have looked at sarcoma UK and i’ve arranged to meet their support group local to me, so thank you for suggesting that. I do hope your wife is doing well

Hi Moopants88

So sorry to hear about your daughter. I also have a daughter with sarcoma although she was 17 at diagnosis (21 now). I agree with you once you are in the waiting phase of things it almost seems worse than the constant hospital visits. I also have supportive friends but they just don't get the fact that the worry is so intense. I find i don't sleep well and my dark place is around 4.30am. I know you will do your best to be strong for your daughter (that is what we do as parents).  Hoping all goes well for you all.

Regards

Affie

Hi Affie 

Thank you for reaching out. You’re right, friends and family are great but they’ll never truly understand the darkness of having a child with cancer. It’s a cloud that I imagine will always linger over us in one way or another. My daughter had surgery two weeks ago to remove the tumour which was a success and she is beginning proton beam radiotherapy at some point soon. It’s pretty risky in an under 3 so we’re nervous but her sarcoma is resistant to chemo so we know it’s her best option. How is your daughter? 

Megan 

Hi Megan

Glad your daughter's operation went well, hopefully the proton beam therapy will be successful too. My daughter has just started another chemo drug, previous ones did not work so fingers crossed for this one! 

Affie

We’ve had a confirmed diagnosis now, it is the alveola soft tissue sarcoma. Only 6 people diagnosed and practically unheard of in a baby, No wonder i’m feeling isolated. So sorry your daughters chemo didn’t work, we were told chemo wasn’t an option for this particular type of soft tissue sarcoma. I really hope the next chemo works for your daughter, we shouldn’t even be having these conversations as parents. Please let me know how she goes 

Hi moopants88 - my 19 year old son was recently diagnosed with a benign craniopharyngioma - it was crushing his optic nerve. He had two lots of brain surgery followed by 5.5 weeks of proton beam in London. There were a goodly lot of people going through and some were very young. Interesting journey since we were perhaps better informed about all things cancer than the average parent, Fingers crossed things go well.

<<hugs>>

Steve