I wanted to share how things are going for us since we got Juan's diagnosis of LMD early January and Juan made the choice not to try the extremely tough treatment options with very uncertain prospects given his tumour burden.
At first, I struggled (and still do sometimes) with this decision but his thought process was that we had all suffered through so many treatments to no avail and he wanted good quality time with me and our son for however many months that he may have.
For the last couple of months, since stopping treatment:
Sleeping like a baby (better than in 6 years he says), no more nightsweats; Pain-free for first time in a year (they did an embolization on two very large rib tumours) ; no more nausea,; no more fevers or flu-like symptoms (often daily with various immunotherapies and trials); eating whatever he likes (filet mignon and chocolate icecream frequently)
He is relaxed and at peace, the level of anxiety in our house has dropped and he smiles so much more.
Saying all this, he is definitely sleeping more and beginning to get weaker, yesterday I got a wheelchair for him. We know we have a limited time of this but it is so good for my 11-year-old son to be getting these fresh memories. He is thriving at school at the moment. It is so nice for both of us to see him feeling "better" and "tranquilo" for a while.
So he knew what he wanted for himself and for us when he made his decision and there can be no regrets. I see it that he is in control and therefore in a certain way he hasn't let melanoma break him or us.
I share all this hoping that it may help some to read this as difficult decisions are made.
my love to everyone on this board
Maria
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