My child has T cell lymphoma, diagnosis around 8 weeks ago, I am a senior sister in PICU. I don’t feel I want support from parents in the usual way, I want to be back at work at some point so professional boundaries are a worry for me.
what groups could I join? Any unique or similar to this?
thinking about completion of treatment, what are good travel insurance companies? It’s almost 3 years away but we have to dream!
Hi again Gem44 and well done navigating across to this rather exclusive club.
I can appreciate the professional boundaries/conflict you are considering but the community is anonymous, you only need to say as much or as little as you want........ you could be anywhere in the world........ but the most important thing is you're a mum of a little lad who has Non Hodgkin's Lymphoma and you want the best for him.
As for the Travel Insurance question I have already put up my experiences in your FIRST POST in the New to Community.
There are a few rather different types of T-Cell NHLs....... do you know the exact type and stage your son has been diagnosed with?........ with this information the group members can connect better.
Has treatment been mentioned? if so what is the name of the treatment..... again this open your search for support further.
My type id a rare skin type...... 7 in a million in the UK diagnosed every year....... but 24 years on from my diagnosis I am still here doing great.
Lets see if there are any parents active on the group but also lurking in the background.
You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey...... and there are a good number of mum's active on the various platformes who have walked this journey.
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
We are always around to chat, to listen or to answer questions as best as we can ((hugs))
Hi, so I never asked the stage, I know with kids it can sound alarming as I already had a good look on the lymphoma action site. 
But he had tumours around his heart lungs kidneys and lumps on his head (how it started)
steroud treatment, that is all gone. Nothing on CT scan. The type he has has been called a lumpy leukaemia and is basically treated in the same way as leaukaemia. The guidelines from 2019 and he is on regime c.
we have chemo Intrathecal I. And oral and very intensive over 6 months. Also has some enzymes via IM as well. So basically they throw the kitchen sink at them.
6months intensive therapy and then 2.5yrs less intensive. Hopefully cured at the end and good chance of that.
I read your story! Just wow! I really think you are amazing going through all that!
Oh bless him...... and you, I just can't imagine being in your position - supportive ((hugs))
I have to be honest and say that in all my year supporting on here and with Lymphoma Action I have never heard of Lumpy Leukaemia........ we have had a few children come through our Leukaemia groups who had T-Cell acute lymphoblastic leukemia (T-ALL)
I know the feeling of the kitchen sink being thrown...... but it is amazing what the body can put up with and as my Mandela quote continually reminds me that there will be a time when you can look back and think that was not possible ((hugs))
Thanks highlander
Now you have said that it’s got me thinking, the consultant has used the term T cell acute lymphoblastic leukaemia. But mostly he says T cell lymphoma and lumpy leukaemia . People say it interchangeably and I haven’t looked anything up deliberately! The consultant juts says he has a lumpy leukaemia. That is treated the same as ALL.
we have a hospital day tomorrow so bed early for us.
you will Jo doubt know more than me. I am not really bothered about numbers etc, what it is, juts that their aim is cure and he has a really good chance after the “kitchen sink treatment “. We just 
eed to get through this next hurdle of the not eating thing ️
we are positive and happy people and as we have said for years! Just keep facing forward!
I hope you have an ok day tomorrow.
There are a number of Leukaemia’s like CLL and SLL that are treated like Low Grade Non Hodgkin’s Lymphoma…….it is a total science.
Juts wanted to come and say all going good with us so far. My boy reach’s maintenance end of Jan all being well! 
Oh this is good to hear and let’s look for the positive progress to continue 
