I am sending caring thoughts and prayers for your son.
You’ve got all my thoughts and wishes behind you, too. Give your son a gentle hug from all of us and know that you do have friends here. xxxxx
I’m so sorry. I can’t imagine what you must be going through. Hopefully, you’ll have some better news tomorrow.
And just know that you can use the Dope to vent or as support as needed. They’ve been wonderful to me in my time of need and they’ll be here for you and your son every step of the way.
I’ll be praying for you both. Hang in there. {{{Woeg}}}
I can’t even imagine what a punch to the gut this must be :(. Best of luck to you and your son.
this needs to be repeated.
I am so sorry. Take it one headbanging moment at a time. Write everything down in a note book to help you out.
As faithfool and others have said, we’re here for you too, and I can’t think of a better bunch of folks as a support group outside of the ones Bos’ has recommended.
“You are not alone”, is a great way to describe the Dope community’s caring for its friends.
Best of luck and please keep us updated!
Bill & Dondra
Good luck to your whole family! It is a long treatment but I know many survivors who have come through in fantastic shape.
My colleague’s son just passed year 3 from initial diagnosis (age 7 now). A big hint from their experience and mine in helping them:
Use as many resources as possible and take advantage of people! Seriously, they are willing and happy to help in any way they can. Ask people for video games, game boys, etc. You will spend more boring time waiting than you can imagine. You ALL need distraction as it is a long process as well.
I wish you all the best.
I sew and make things, and I’d be happy to send something if you like. xoxo
I wish I knew what to say.
If there’s anything you need please ask us.
Your family is in my prayers. Please be brave for him!
OP:
Well that sucks. I, and most of my friends and family, are HERE for you.
Everyone else:
Check out the link.
Consider registering as a bone marrow donor, especially if you are young and of mixed ethnicity.
Consider donating your umbilical cords if you’re pregnant.
Consider donating your platelets.
You might get lucky and be a hero.
I’m so sorry to hear this, I’ll keep your son and your family in my thoughts. Leukemia sucks, cancer sucks, but these days so much can be done.
My brother was diagnosed with Leukemia, the AML version, back in 2004 when he was 17. It started out nearly the same with him, he was always tired and bruised super easy as well as being sick a lot. The doc thought he was just low on iron and ordered blood tests. The next thing i know I’m answering the phone the next day or a couple days later and it’s the doc telling me we have to get him to the Cleveland Clinic asap…and yeah i had to tell my baby brother my only sibling he had cancer. We had some really really rough times and chemo can be a bitch, but he’s gonna be 25 this year and has passed a very important mark this year of being cancer free for 7 years!
Make sure you take full advantage of all support the hospital is willing to offer, it’ll do you a world of good. Also maybe see if there is an older kid around that has gone through the same kind of illness to maybe hang out with your son a bit. My brother goes back to the hospital once in a while now and talks to some of the kids that are having a rough time. Remember that medical science makes leaps and bounds at such a rapid pace these days. My brother benefited loads from recent breakthroughs of the time, so just think of all the things that will be available for your son.
Please let us know if there’s anything we can do to help. My prayers for tomorrow.
StG
I am so very sorry. I wish you and your family all the best.
Sending positive and healing thoughts your way.
I’m so sorry to read this. Please do keep us updated on his progress.
A quick update, with some hopeful news…
They analyzed the fluid from his spine, and found no cancerous cells. The docs said this is very encouraging - in fact, the doc said he pretty much considers this proof that Riley has ALL as opposed to AML, and that now its just a matter of what subtype it is in order to find the best path for treatment. We should have this information tomorrow.
Riley was in a great mood tonight, once he woke up from sedation. My eldest son and I brought him his Nintendo DS and a couple new games, and got enthusiastic “No way!” responses. Alas, he’s finding it hard to play - his left hand is strapped to a rigid piece of plastic to keep him from pulling the various tubes and wires connected to him loose, and this makes it hard for him to play the games…but they cheered him anyway. He put in his favorite Spongebob game and just let the music to it play. Yeah, I cried. I’m crying now.
They moved him to a bigger room, with a few more amenities. He has a DVD player, so I’m bringing him a stack of his favorite movies tomorrow. He also asked me to write a story about his stuffed animals, which he keeps at his side. I’m trying…its hard.
After about an hour, the pain started kicking in, and he started crying. His bones ache and his head hurts, and I hate that I can’t do anything about them.
On the medical side, a few numbers (doing my best from memory - gonna bring a notebook tomorrow to make sure I record things better):
On Sunday night, his platelette count, which should have been around 150, was 19. This morning, it got to 29, but dropped to 22 by the time I left this evening.
His hemo count (I think that’s what it was?) which should be around 25 (I think), was 4. They got it to 6, and hope to have it to 8 before the morning.
His white blood cell count is most concerning. It’s count is supposed to be 15,000. His was at 120,000. The doctor said that he only has about 19% of his blood cells that are “functional” and the rest are immature cells.
All that said, he reacted well to the chemo, and didn’t seem phased in the slightest. He had no hunger, but he ate a cup of pudding with much prodding from me and his mom. He also was very excited that his brother brought him his favorite sour candy, and that the nurses cleared it for him to eat.
One last bit - I came home tonight to find my local circle of friends here, preparing dinner for us so neither my wife nor I would have to worry about it. They also gave us a card, with a generous amount of cash - I’ve been working two jobs lately because things have been tight, and they wanted me to be able to take the time off I need to without worrying about the money. I couldn’t help it…fell apart, sobbing, the works. Then I come here and find the incredible outpouring of support from my online family…and really, I’m at a loss for words to say how it makes me feel. I am blessed, truly, with a wonderful support network.
Thank you all.
Mark/Woeg
A+. I registered on Be the Match a year or so ago and I invited all my friends to do the same. Seriously. Do it.
I’m sending all my best wishes to you and your son. I have a five year old little boy, too, and I can’t imagine. We’ll be thinking of you.
I’m not in Macon, but I will make an appointment to donate platelets on Thursday, the only night the center is open.
And ask all my friends to ask all their friends …
Take gentle care of yourself, Woeg. A good friend of mine’s niece was diagnosed with neuroblastoma at the age of 3. She’s now 5 and her last blood tests were good; however, it’s likely to come back as she nears puberty if not before. One thing I’ve learned from them is that you have to take it one day at a time. This is a rough journey for you and your family. Sending all the healing mojo I can your direction.
ETA: I almost forgot to mention that Caring Bridge has been a godsend to this family. A blog with photos and a community of other families going through similar crises. Please consider it and if you’re comfortable with it, please share the link with us.