Comments on: The Taking Tree: Late Effects Are Teh Awesome

By: Melina

Melina — Sun, 31 May 2009 00:35:49 +0000

I just have to say – that was awesome. You are the voice for young adult surivivor/fighters. My son is one of the victims diagnosed as a child, age 4 1/2 to be exact – same tumor as you. But you know what? Here he is almost 5 years out from surgery, no frigging “real” follow up, just “Oh, here, give him this shot full of hormones” or “Oh, he’s failing every subject? Well, there ARE cognitive late effects, you did sign the release forms…” To the real world, after his hair grew back, he is just the weird kid that walks funny – nobody f-ing knows or cares what he went through. If I ever, God forbid!, cry for what he has lost, there is some ass who tells me “well, at least he is here!” I’m not allowed to cry and neither is he….

Yeah, I’m sure Levi would say the same, if he could read this…

Cheers from VA!

By: Marg

Marg — Sat, 30 May 2009 12:15:02 +0000

Yesterday I spent the day at the hospital with my daughter at a late effects clinic. She had brain cancer when she was 10, that was 11 years ago.

Survivorship is so difficult for her; she has many and varied deficits due to the cancer and its treatment. Much of what you had to say really resonated with me. She broke down entirely yesterday – a kid who has fought so hard to survive – “I just want to die – i don’t want to live anymore…”

Thank you for your voice,
Marg, Mum to Maidlin dx medulloblastoma 6/98, now 21.

By: Marilyn Dresser

Marilyn Dresser — Fri, 29 May 2009 23:11:08 +0000

You give a voice to something that our younger kids can’t and I appreciate that. My son is 12, diagnosed 1t 3 1/2. At the time he spoke only Russian, so Nyet, may have been most of what we heard. It was only when we were at clinic and we met a tween with a medullo and neuropathies, and she told me , when he drops down, its because his legs hurt so much that he can’t stand anymore….I do it too, that I learned. And while I am not sure I understand your piece I have learned from it. I wish we had been given a checklist of what might happen x years down the road, so we could check it off as it happens. That knowledge would be power, because the continuing hearing loss, the optic nerve atrophy, all of the late stuff would be less scary. I have to tell you I was having a bad day today, just generally, spring allergies, family stuff, and your words made me stop in my tracks. There isn’t a day that goes by that I don’t think, am I going to live long enough to help him with all the stuff that is going to come down the road? Bake bread, play with a puppy, smell the lilacs and hold on tight. I thank you for your words to ponder and for your unique point of view. Point of view proves to mean quite a bit in life.

By: Julie Engel

Julie Engel — Fri, 29 May 2009 17:26:50 +0000

I’m not even sure how to reply to this, but I truly feel compelled to respond. I’m not sure exactly what your complaint is. Are you mad that you are a 13 year cancer survivor? Are you upset that this happened to you when you were 21, rather than when you were 2 or 50? Are you upset that you haven’t gotten enough help with late-effects of treatment – in your opinion, because you don’t fit into the children, boomer, or geezer category? What do you want?

So many people have been touched by cancer. I hear all the time from friends, co-workers, and strangers about their mother, father, grandparent, aunt, uncle, etc. who survived or died from some form of cancer. Heck, my own father died from cancer when he was only 60 (a geezer, by your calculations). I get so tired of hearing it. Why, you might ask? Because… my granddaughter, whom I am raising, was born with her high-grade malignant brain tumor. Yep, had it in her mother’s womb. I’ve never, during the two-years that we’ve have battled this, met anyone in person or on-line who was diagnosed prior to birth. What percentage would that put her in?

Late effects? Temporary hearing loss would suck, I’ll give you that. But, how about permanent blindness, totally G-tube fed, seizures, global developmental delays, non-mobil, non-verbal, and cerebral palsy. Our little girl will never be able to write a rant like the one you just wrote. She’ll never get to complain that her needs have been grossly over-looked by the medical community – and believe me, they have been. Her neurologist actually compared her to having a pet.

I’m sorry for your struggles, but the bitterness I just don’t understand. It would be great if there were no late effects, no cancer at all. Hopefully, we will get there one day. However, there is you, and there is my granddaughter, and there are thousands of others – young, old, and in the middle. We all count! ALL!!!

Julie Engel – Brianna’s Grandma

By: Diane Gallagher

Diane Gallagher — Fri, 29 May 2009 13:30:44 +0000

Wow! I wish I could put into words my feelings on cancer and it’s long term effects on my 7 year old daughter. It would be full on *#*# words. Great Job!