any other spcial needs cancer kids? - Mothering Forums

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#1 of 16 Old 12-15-2007, 09:27 PM - Thread Starter
 
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My little guy 18mths has cancer (leukemia)... just wanted to know if there are any other MDC mamas dealing with this as their special need?
My son also has some other "special" traits... polydactly, microcephaly...
anyone?
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#2 of 16 Old 12-15-2007, 09:34 PM
 
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Oh, mama. I know there is at least one other mom here who has a child battling cancer, I just can't think of names off the top of my head.

Wishing strength and healing to your sweet ds.
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#3 of 16 Old 12-15-2007, 09:38 PM
 
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Oh what a brave little boy! And mama!

I'm not aware of any other cancer mamas, but I hope someone replies who can relate. Of course come on over to this forum to vent whenever you feel the need!

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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#4 of 16 Old 12-15-2007, 09:40 PM
 
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A big to you and your precious son.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#5 of 16 Old 12-17-2007, 02:04 AM - Thread Starter
 
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Thanks mamas... DS is going to be tested this week (blood test) for a very rare genetic condition ( that would cause all of his special traits...) at least then I'd have a name and know what to expect for his future...
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#6 of 16 Old 12-17-2007, 09:32 AM
 
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What are they testing for, if you don't mind sharing

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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#7 of 16 Old 12-26-2007, 07:35 PM
 
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hi nmm2112 - in our case, our 7 month old dd has brain cancer. i was surprised that there wasn't a support thread already in existence for kids w/ cancer on the special needs forum. i guess (i hope) that means that not very many MDC'ers are dealing with cancer in their kiddos.

anyway, i'm sure there are other websites/forums that provide parent to parent support for both leukemia and brain cancer, but i wanted to start my search for support here on MDC. so, even though i am NOT glad that either of us is dealing with babes with cancer, i AM glad to have found your post. perhaps we can be of support to one another.

this whole mess has all unfolded over the past three weeks, so everything is very new and very uncertain for us. i have so many unanswered questions. right now i am focused on trying to figure out which parts of our lives can remain more or less intact (jobs, daycare, social gatherings, etc) and which ones are changed forever. how do we help our 4 year old ds understand and cope with all the changes? we are looking at frequent hospitalizations over the better part of a year (assuming she survives that long and responds to the chemo). she has been so healthy and it is still so unbelievable.

sending virtual hugs and good vibes to you and your little one. ~isis

Mama to my talkaholic DS (Oct 2003) and my climbaholic DD (May 2007).
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#8 of 16 Old 12-26-2007, 09:20 PM
 
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s: to both of you!!! I don't have any experience with cancer in kids, but I just didn't want to read and not post s:
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#9 of 16 Old 12-27-2007, 08:26 PM - Thread Starter
 
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Quote:
Originally Posted by 2boyzmama View Post
What are they testing for, if you don't mind sharing
Nijmegen Breakage Syndrome... which isn't somethin you'd want to have...

Send us some good vibes/prayers as they'll draw some blood for the test Jan 3rd... and then the wait begins...
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#10 of 16 Old 12-27-2007, 08:31 PM - Thread Starter
 
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Quote:
Originally Posted by isisreturning View Post
so, even though i am NOT glad that either of us is dealing with babes with cancer, i AM glad to have found your post. perhaps we can be of support to one another.
. ~isis
Hey mama! Glad you found this thread! Have you checked out www.caringbridge.org? Gabe's page isn't current but alot of other mamas find it a great way to keep everyone uptodate with what's going on...

Gabe is doing really well overall.... I've met lots of other moms and kids with cancer at our weekly clinic visits but sometimes you just don't get time to talk there.... I'm not sure what your experience has been... if you ever want to chat over the phone just send me a PM ( I have free long distance)

What's your DD's treatment/chemo schedule like? I'm not sure how brain cancer is treated vs leukemia.....

It's not easy... but know that you're not alone... and there is a light at the end of the tunnel!
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#11 of 16 Old 12-27-2007, 10:34 PM
 
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Hugs mamas, I don't know anything about these specific cancers, except you might want to check out the "Healing the Gut" thread about ways to optimize the immune system while receiving chemo/radiation. Apparently, 70% of the immune system is located in/around the digestive tract. So, protecting that is significant when immunocompromised. http://www.mothering.com/discussions...d.php?t=434071

Also, consider seeing a classical homeopath about constitutional remedies to optimize the immune system. Dh and ds both have allergy issues (and dh had severe asthma) which have been resolved with classical homeopathy. Homeopathy is totally acceptable to use concurrently with allopathy.

You also might want to check about breastmilk donors, if needed for the immune system support.


Sending peace and strength and healing energy to your children.:

Pat

I have a blog.
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#12 of 16 Old 12-31-2007, 12:15 PM
 
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WuWei - thanks for the tips, I'll check into all that. luckily she is still nursing, and nursing well - i will nurse her as long as she wants to, although i've heard that eventually most kids going through chemo lose their appetites and require a feeding tube - but i'll pump to keep my supply up if that happens.

nmm2112 - good vibes from me to you for the jan 3rd tests. zoe starts chemo probably at the end of this week. treatment will run every 3 weeks for 6 cycles. each cycle involves 3-4 days of inpatient treatment, followed by about a week of staying in town near the hospital. so, about 10 days away from home at a time. yikes! meanwhile, my husband and 4 year old son will try to work and go to school and carry on with "normal" things as best they can. luckily we have a lot of financial, practical and emotional support to help us cope with all these changes. zoe does have a caringbridge website - it is a fantastic resource for keeping our family and friends and well-wishers up to date.

Mama to my talkaholic DS (Oct 2003) and my climbaholic DD (May 2007).
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#13 of 16 Old 07-14-2008, 08:44 PM
 
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Our 2 year old baby girl was just diagnosed with ALL on July 3. She is still nursing, no VitK shot at birth. I can't get my head around it. I'm looking for advice on pain managment, Reiki, Hypnotherapy, Etc.. Please help fast. Chemo has already begun.
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#14 of 16 Old 07-14-2008, 11:11 PM
 
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To the three of you. Maemaesmama, I wanted to let you know about this, and certainly any other mommy of a SN or ill kiddo is free to do this as well.
There is a site called the distant healing network that utilizes volunteers to send reiki, pray, conduct spiritual healing etc... whatever you would like. It is free. All you need to do is submit a request. here is the link:

http://www.the-dhn.com/

I hope your children are all healing quickly.

M : proud mama to B (16) : and G (8) and : x 2 :
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#15 of 16 Old 07-15-2008, 03:25 PM - Thread Starter
 
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Hey Maemaesmama!!! I'm so sorry to hear about DD's ALL diagnosis -- I still can't believe it's been a year since Gabe was diagnosed with ALL. The marathon is just beginning.... the chemo against ALL is surely more of a marathon than a sprint and can be full of lots of yucky things... Feel free to PM or email me if you want to chat with a mama who is a little bit ahead of you on what it's all like....

I'm not sure about alternate type therapies and whatnot... The Pain management Gabe was on and currently is on... is not that great...the Dr's try to have me focus on relaxation and gentle touch and quiet -- sort of anything you might do for a laboring woman...

And Thankgoodness she's still nursing!!!!:: That has TRUELY been a lifesaver for Gabe....

Are you on a 2/2.5 yr chemo program? Just curious to see if our little ones are on the same chemo regimine...
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#16 of 16 Old 07-15-2008, 07:32 PM
 
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Mom to dd (8), ds (6), and dd (1)

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