[DanL]

Relentless,

I am both sorry to hear about your son's progression and excited that he will have the chance to be cured of his disease. I stood in a watch and wait mode for MDS for almost 5 years before proceeding to transplant. Transplant is a difficult process and takes time and as you know carries many risks, but in many cases the alternative is not very good either.

There are a lot of good transplant stories here on the forums and a lot of advice better than what I can provide, but my experience has been very much filled with ups and downs, so being prepared to have good days and months and bad days and months is the first piece of advice I can give. Don't get distracted by the day to day, focus on the long term - while enjoying the good days along the way.

Build a team of doctors that you trust, that give you the right amount of information to make you and your son comfortable, that you trust should difficult times arise before, during or after the transplant process.

Meet the infectious disease specialist for the team - I have needed this person three times in the last year and a half, and they have been incredibly good to me and for me. When something goes wrong, they are the ones responsible for bailing you out of those opportunistic infections and the better they are at doing so, the quicker you are recovering.

Be your advocate at all times - doctors and nurses are really good and care alot, but they don't care about your life or your son's life as much as you do, always ask the question regardless of whether you think that it is worthy of being asked, even the simple one of - why is this medication being administered again? or why not?

Have your son dress comfortably, have games available, movies available, computer, etc. boredom reigns supreme after the first 5 days. Also, make sure that he gets up and walks, stretches, talks moves, eats, - even if it is only ice cream or PBJs. Use the pain killers - especially in the days after the chemo and radiation have been given and the white blood cells are declining or non-existent. this is when he will experience the most discomfort in every aspect - take the drugs - there are no points for being the tough guy.

Recognize that for weeks, maybe months after all of the chemo, mental functions will be diminished - he will not be as sharp as he is now. it will all come back, but it takes time, and you nor anybody else will understand why, it is called chemo brain, it is real, and it does take time to recover from.

Get support, accept support, realize that it is ok to feel a little or a lot lost, scared, concerned, bothered......these are all normal, just don't let them consume either of you. Coping is important.

There is a whole lot more, but these may help you start out.

I wish you and your son the very best of luck and health.
Dan