DownSyn Forum

sunny · Posted: May 13 2011, 10:27 PM Post subject: AML leukemia after TMD

I'm kind of sad and numb. 2 (or has it been 3?) days ago, our now 15-month-old was diagnosed with myelodysplastic syndrome / AML. She's supposed to start chemotherapy in 2 weeks. It'll be 6 cycles, one every 4 weeks. I don't know how we're going to do this. But we will. I guess her heme/onc wrote the book on treating kids with DS and leukemia. (Children's Hospital of Michigan in Detroit) But it's still scary.

Night-night.
Tonya

_________________
Tonya, wife to Ron since '05.
Zoe, 4.5 years old
Sean, born at 23 6/7 weeks, 3/29/08-4/24/08
Sunny, 1/28/10 with T21

TheBradyBunch · Posted: May 13 2011, 10:36 PM Post subject:

I don't have experience with this, but I know it must be so scary.

My prayers are with you. The good news is our kids are amazingly resilient and pull through quite well. Not that it makes it any easier for you as a parent...

We are all here for you during this rough time.

- Christina

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

logansmom · Posted: May 14 2011, 7:21 AM Post subject:

I'm so sorry you're having to deal with this. I know there are several parents online that have traveled a similar journey. Hopefully they can give you some suggestions to help a bit along the way.

Your little one and your entire family are in our thoughts and prayers.

Kim

_________________

Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)

Annieo · Posted: May 14 2011, 8:35 AM Post subject:

I'm so sorry to hear this. My son was diagnosed with ALL when he was 2 1/2. I completely understand the numb part. I think I asked the same questions three times over in those first few weeks. Kids with DS who are diagnosed with AML have a higher survival rate than typical kids, so don't panic when reading about AML on-line. I'm glad to hear your onc is an expert in treating kids with DS and leukemia.

There are others here whose kids have had AML. They'll have better information for you on exactly what to expect as the treatment is somewhat different than for ALL.

Hugs and prayers!

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

EAS1971 · Posted: May 14 2011, 4:54 PM Post subject:

I'm so sorry to hear this! You all have my thoughts and prayers.

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

robindenise12 · Posted: May 14 2011, 9:09 PM Post subject:

Tonya,
I am so sorry to hear about your daughters dx. I sent you a private message, but I am some what new to this board so I hope it reaches you. My son was dx with AML last summer at 19 months. I understand everything you are feeling. I would be happy to answer any questions you may have. Please feel free to email me at robindenise12@yahoo.com. My prayers are with you and please hang in there mama.
Prayers and hugs to you,
Robin

AliMama · Posted: May 14 2011, 9:38 PM Post subject:

How scary that must be--I can't imagine. I'm so glad that you have access to wonderful medical care. Keep us updated, and I'll be praying--

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

Edensmama · Posted: May 14 2011, 11:25 PM Post subject:

I'm so sorry to hear about this Tonya. Eden was diagnosed with AML in January 2010 when she was 21 months old. Treatment is intense, I'm not gonna lie. But you will get through it and your girl is going to amaze you with her resilience, strength and spirit. Our kids tend to respond really well to treatment. Eden was in remission after her second round of chemo and has been done with treatment for nearly a year now. She is feeling great, kicking a** on all her doctors visits and you'd never even know she had been sick. She even has her hair back. Huge hugs to you and your family. Please PM me or email me at nsalem10805@gmail.com if you have any questions. If you want to talk I am also happy to do that. I know when we were in the thick of it I had so many questions and was able to reach out to another Downsyn leukemia mama for advice.

I'll be praying!

_________________
Nathalie
Mom to Eden (DS) 4-13-08
Wife to Luciano (the best daddy in the world) since 10-8-2005
www.caringbridge.org/visit/edensalem

Tigger · Posted: May 15 2011, 3:30 AM Post subject:

Thinking of you and praying for all to be well. Chemo is hard (I am going through it myself at the moment) but as others have said, our kids respond well. I have a friend whose little one has just finished chemo (she and I have the same haircut LOL) and she is doing really well - happier, healthier and more energetic than before. {{{hugs}}

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

DanielsMommy · Posted: May 15 2011, 9:10 AM Post subject:

Many prayers coming your way.

_________________

Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

mij · Posted: May 15 2011, 11:42 AM Post subject:

Sorry to hear the bad news. Sad

I will keep you in my prayers I'm sure your little one will pull through and be 100% healthy. - god bless

LinMac · Posted: May 15 2011, 1:38 PM Post subject:

Tonya, Praying for you all in Dublin, Ireland.
I have just supported my twin sister throught chemo for breast cancer.
She is doing fine now.

One day at a time my friend...you can do this!
And remember we are here at downsyn to help and support.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

JanetG · Posted: May 16 2011, 8:20 AM Post subject:

OH NO! I don't have any experience, but will be keep you and your sweet girl in my prayers and sending tons of healing vibes your way...

_________________
Janet (47)
Joshua (angel) '85 (1 day old)
Sarah-age 25
Jaret-age 8
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

whaleritis · Posted: July 21 2011, 8:47 PM Post subject:

Hi sunny,

I just notice you post. It sounds like you are in great hands. Brylee was diagnosed with aml a week after her second birthday. She had chemo therapy one week a month for six months. It was a very difficult road seeing my little one go through it. I took it one day at a time. She is now five and has been in remission for three years. Hugs and prayers.

_________________
Myriam & Chris
mommy & daddy to Brylee (5/29/06, DS AML remission) & Abigail (7/3/07)

nnista · Posted: July 26 2011, 1:34 PM Post subject:

I hope all the best for you and your daughter!

kris10z · Posted: July 28 2011, 2:57 PM Post subject:

Praying. I know the numb feeling. Ethan was dx'd with ALL when he was 2. Glad you have an excellent oncologist to help you through this journey! If you ever need to talk, just let me know! I understand the need to vent at 3am.

_________________
Kristen: Wife to Scott, Mama Bear to Ethan
(05/25/01, DS & ALL)
Taking the Step to a Healthier Self with Juice Plus+
www.fillthegap-juiceplus.com

Noah's_Parents · Posted: September 27 2011, 3:34 PM Post subject:

Hello,

My son, Noah was diagnosed with transient leukemia at four weeks old and myelodysplastic syndrome at eighteen months. He went into remission after the first round of chemo and went through six months of chemo to finish his treatment. That was three years ago and he's been doing great since!

I justed wanted to give you some encouragement because we've been through some of the same trials and I know how scary it can be when you're in the middle of it.

Prayers going out for you and your family,

Jenny

Amy · Posted: September 27 2011, 6:09 PM Post subject:

So sorry ya'll are going through this. {{{{{HUGS}}}}

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS