leukemia anybody? - Mothering Forums

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Old 09-13-2010, 06:55 PM - Thread Starter
 
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Last week we were shocked to discover that our son, who has T21/Ds has leukemia.

Anyone else dealing with this? Anyone else dealing with 3 years of chemo?

I'm at the beginning of what looks to be a steep learning curve and a long bumpy road. I would love to find a community here.

One happy momma joy.gif to a very spirited little girl dust.gif, her tough little brother superhero.gif, and a happy little suprise late April 2012 stork-suprise.gif. Wife to an overworked and under paid husband geek.gif.

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Old 09-13-2010, 07:58 PM
 
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I couldn't read without giving you a big . I'm so sorry that you and your son are going through this.

 
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Old 09-13-2010, 08:42 PM
 
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Don't have any experience with this but wanted to give a

Martha
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Old 09-13-2010, 08:48 PM
 
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No experience either but lots of

Cassie, mom to Alex(4/7/05), Aidan(7/12/07), and Andrew(8/18/08)

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Old 09-13-2010, 09:14 PM
 
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I can't even imagine. I wish you a speedy treatment and a full recovery.
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Old 09-13-2010, 09:20 PM
 
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I'm not a leukemia mom either, but my heart absolutely goes out to you. I've read posts here from some moms of kids with leukemia, so I know they're out there. Maybe the rest of us can keep bumping you with hugs until they log on.
I wish you and your family all the best and lots of healing.
Peace, Rachel

Mom to DD1 (Feb 2006) and DD2 (June 2008) with HIE, CP, dev delays and reflux
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Old 09-14-2010, 03:06 AM
 
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Not leukemia, but my DD did have an aggressive form of brain cancer. So while I don't know all the ins and outs of leukemia treatment, I do have a good sense of the horrible slog that you, your DS and your whole family are about to endure.

So sorry. And hugs. Many hugs.

From what I understand, the trick with leukemia is a) get into remission, pronto, with some immediate heavy duty chemo, b) slog through more chemo to stay in remission, and - assuming things are still on track - c) slog through "maintenance" chemo, which is much easier to handle than phases a) and b). The first several months tend to be the hardest, I think. Not only because of the chemo itself, but also because of the shock of it all. Hospital life is hard. Cancer life is hard. Chemo (and possibly radiation) are pretty bad for you. That's why they only give it to you if you have something worse (like leukemia).

All I can offer is this: take whatever help you can get. And: you get used to it. It doesn't necessarily get "easier," but you do get used to it. You will learn. You will get through it. You won't really have another choice. [Insert more hugs here.]

I'm positive there are leukemia specific support forums elsewhere on the web. They are not necessarily going to be full of folks who follow a Mothering approach to parenting, medicine and special needs... but they will know a lot about the forced march you embarking on.

I'm happy to chat more by PM if you want. I also know how busy you are about to be, so if I don't hear from you - or only hear from you sporadically... don't worry: I get it!

Sending good thoughts to you and your DS...

Mama to my talkaholic DS (Oct 2003) and my climbaholic DD (May 2007).
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Old 09-14-2010, 09:16 AM
 
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Oh no mama!!! A million giant HUGS!

I have some experience with a friend having Lymphoma, and I have an adult friend going through treatment for a horrible and very aggressive brain tumor, but I don't know much about Leukemia. I do know that Connor's syndrome puts him at increased risk of developing it, but I've steadfastly ignored any of the research pertaining to it...denial I guess.

May I ask how it was found?

My friend going through the brain tumor treatment is getting a lot of help, and that will hopefully keep he and his wife afloat. I don't think they've had to cook a single meal, or mow their grass a single time. When he's in the hospital and able to have visitors, someone is there by his side at ALL times. When his daily radiation treatments start, someone will be driving him to and from since his wife still has to work. We have all pulled together to do out part. I HOPE HOPE HOPE that you have family/friends who will do the same for you.

Where do you live...maybe I can help

Many many hugs to you and your family.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 09-14-2010, 09:40 AM
 
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I just saw this in new posts. We have dear friends who are now starting year 3 of treatment for their son's leukemia. He was 3 when he was diagnosed. If you would like to get in contact with them, please PM me. I am in central FL, but they live in another state. I do know that early on their oncologist/hospital put them in touch with some other families who were further along in treatment, and that it was invaluable. Maybe you could ask your provider about this?

He is doing great now, btw, and has just started kindergarten. Those first 6 months in particular were really challenging, I know. Big hugs to you!!

Trying to get my bearings...
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Old 09-14-2010, 03:18 PM
 
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big hugs for you and your little one, mama. I hope you can find some support here.

My sister was diagnosed with leukemia (ALL= Acute Lymphocytic Leukemia) when she was 17. She will be hosting a party in November this year to celebrate 15 years in remission...and I hope for a similar outcome for you!
The protocol described by a PP was what we experienced 15 years ago: 1 month of remission induction...really intense, awful chemo. Then a few months of radiation + chemo to prevent any spread to other parts of the body. Then 2 years of more mild maintenance...though she was still ill, she was able to attend school for much of this time, sometimes in the classroom, sometimes working from home.
She found organizations like Candlelighters (which is canadian) very helpful, and my mom also connected with other parents. Our hospital social worker at the time was excellent as well.
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Old 09-14-2010, 03:35 PM
 
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Quote:
Originally Posted by proudmamanow View Post
big hugs for you and your little one, mama. I hope you can find some support here.

My sister was diagnosed with leukemia (ALL= Acute Lymphocytic Leukemia) when she was 17. She will be hosting a party in November this year to celebrate 15 years in remission...and I hope for a similar outcome for you!
The protocol described by a PP was what we experienced 15 years ago: 1 month of remission induction...really intense, awful chemo. Then a few months of radiation + chemo to prevent any spread to other parts of the body. Then 2 years of more mild maintenance...though she was still ill, she was able to attend school for much of this time, sometimes in the classroom, sometimes working from home.
She found organizations like Candlelighters (which is canadian) very helpful, and my mom also connected with other parents. Our hospital social worker at the time was excellent as well.

Wow, your sister shares- almost exactly- my own story, right down to age at diagnosis.

I was very lucky- and actually managed to work and go to school throughout most of the process. I did have to learn my limitations along the way, but I've also gone on to have three healthy kids and while I am immune-compromised as an adult, I was immune compromised throughout my childhood even before diagnosis.

It's a long and messy road, OP, but it is also something I look back on and that helps me to celebrate life beyond that journey every day.
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Old 11-29-2010, 03:06 PM
 
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I know this is a older post, but wanted to say my son was diagnosed with ALL last week.  Have you found others yet?  I am finding that the more people I tell, the more I find that others have gone through this or know someone who has.  Hope things are going ok.  {hugs}


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Old 11-30-2010, 03:53 PM
 
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No direct experience, but you are very much in my thoughts and prayers.  This forum is a very supportive safe place to talk and vent.  We're here for you.


Normal is just a setting on your dryer.
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Old 12-07-2010, 05:34 AM
 
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Was browsing and came across your thread so I hope you don't mind me chiming in, I am so sorry to hear your little boy has leukemiia My nephew had Leukemia and my my brother and sister in law found this book a great help http://www.amazon.com/Childhood-Leukemia-Families-Caregivers-Centered/dp/1449380433/ref=sr_1_1?ie=UTF8&qid=1291724851&sr=8-1 .

 

I hope your son has a speedy recovery.

 

Sam


Sam, mum to: Ian, James, Lottie, Maddy, Jack, Ruby, Bronte & Sophia and Nate
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