I remember that when the calendar pages of pills that the nurse wrote out ended, and I had to figure it out from the pill bottles, I felt a bit lost.

I'm glad to hear that your son is doing well. Don't worry that most of our kids have a different diagnosis, this forum is for all of us.

Hi

I too have a child with Hodgkin's lymphoma.  My daughter,Elena, was diagnosed with stage 3B nodular almost exactly a year ago.  The last year has been a blur.  She has finished treatment -- done in May and has had two clean pet/ct scans.  We were lucky that she spent no time in the hospital, it was all done outpatient. 6 rounds of chemo and 5 weeks of radiation for her neck, chest, left side of her pelvis and spleen.  She responded quickly to  BEACOPP, a protocol used primarily in Europe and at a few hospital in the US.  We were at Sloan. I wish you luck -- Over the time, the treatment seemed almost normal.  I felt safe at the Hospital, they understood us and our situation.  However, it is weird that so few kids have this form of lymphoma.  It is even rarer for girls younger than puberty.  Apparently this is not true in Europe, but they don't know why. Elena is doing very well, but is struggling to catch up in school -- last year when she went in, she was a celebrity.  She is also trying to catch up so that she can compete in gymnastics.  I think we all felt that when we came out on the other side - successfully completing treatment -- our MD says that the term "remission" does not apply to Hodgkins since the nodes still have scarring --that life would go back to normal.  I guess it is the new normal, but we are all in therapy -- we have a great art/family therapist, and she is on a "little bit of zoloft" to deal with her anger and depression.  I hope all goes well. Please feel free to keep writing!

She will be ten in January.  I also caught that they upped his diagnosis to stage four without telling you.  How frustrating and not a little scary.  I found that while the care has been impeccable at Sloan, they do not always give us information,  nothing as important as staging, but  they are not always forthcoming. You would think that they would understand the psyche of the patients and their families. Good luck this week!  Kathy

I too am an ALL parent (of Sam, dx in Jan. 2004, and OT since 5/2007).  But I reply to let you know that one of Sam's classmates, dx with HL about two years before Sam (so, at about age 13) is about 8 years off treatment now, and doing fine.

Good luck.  Sorry you had to join us here, but it's a good place to share and get information from other parents who really have been in your shoes and understand your concerns.  It's tough to get this kind of assistance from people who have not been through it.  They may want to help, but they just don't understand what you are going through.  We get it.

Doug