My 4 year old daughter was diagnosed with a very aggressive form of brain cancer today........ - Mothering Forums
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#1 of 66 Old 12-14-2011, 09:01 PM - Thread Starter
 
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   I found out today that my daughter has been diagnosed with  very aggressive grade 4 brain cancer. She is only 4 years old, and will be 5 in January. My heart is just broken, everything keeps just getting worse and worse. She had a seizure about a month and a half ago ago, found the tumor on the 17th, two brain hemorrhages,brain surgery last Wednesday to have to mass taken out, and now we found out today that its astrocytoma grade IV aka GBM......it has a very poor prognosis.

 

 I am so very overwhelmed, i don't know what i am supposed to tell my DD. I have to tell her something, she knows that something is going on. How do i explain the radiation? She has to go to the hospital  every weekday for 6 weeks, be sedated and exposed to radiation for an hour. She has to go have a port put in this week, how do i explain to her that she is recovering AMAZINGLY well from the surgery, and that even though she doesn't feel sick, that she will feel VERY sick in a few weeks, and will have to miss her birthday, and that it is all to make her be healthy???

 

I'm so lost.......i don't know what to do. :(


Melanie- Mama to my super hero daughter superhero.gif bravely battling brain cancer. ribbongrey.gif ribbongold.gif  www.fightformaddie.com  and expecting 1sttri.gif 1/13!!!!

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#2 of 66 Old 12-14-2011, 09:10 PM
 
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No advice but you and she will be in my thoughts as you start this walk................

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#3 of 66 Old 12-14-2011, 09:16 PM
 
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I can not even imagine what you must be going through. You and your sweet baby girl are in my thoughts and my prayers. (((((hugs))))) 

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#4 of 66 Old 12-14-2011, 09:28 PM
 
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hug2.gifi don't know what to say. your daughter will take her cues from you so be strong and confident in the decisions you make. she will understand it's all for her best. so much love and light sent to you guys. goodvibes.gif


  

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#5 of 66 Old 12-14-2011, 09:37 PM
 
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praying for you and your daughter...

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#6 of 66 Old 12-15-2011, 10:41 AM
 
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I couldn't read and not respond...your family is in my prayers...

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#7 of 66 Old 12-15-2011, 10:47 AM
 
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I don't have any answers for you, but I wanted to offer my support. I'm so sorry you're going through this. You and your daughter will be in my prayers.


Mama to five babies. The newest one made her debut 7.10.12!

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#8 of 66 Old 12-15-2011, 10:50 AM
 
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I'm so sorry.  I'll be praying for you guys.  Children are amazingly resilient-- just try to keep focusing on her cure.

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#9 of 66 Old 12-15-2011, 11:15 AM
 
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I'm so sorry. If they haven't offered, please ask for a child life specialist to work with at the hospital. They will help explain the procedures, ease fears with therapeutic play, keep her as comfortable as possible, bring toys and books to keep her entertained, etc. They can be a big help when a little one is so sick. hug2.gif

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#10 of 66 Old 12-15-2011, 05:39 PM
 
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#11 of 66 Old 12-15-2011, 06:30 PM
 
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There are no adequate words, but all I have to offer is that I am beyond sorry.  You are starting a long journey that no parent should have to walk.  I want to echo the advice of cameragirl above.  Our godson was diagnosed with cancer at age 4.  His parent found lots of support and assistance from the specialists in the hospital whose job it is to work exclusively with the kids and families facing this type of situation.  They can often translate very scary and painful news into something that kids can wrap their brains around.

 

Again, I am so, so sorry.  Please update us if you can.  Healing vibes and prayers for strength, peace and comfort to you, your family and your little girl.


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#12 of 66 Old 12-15-2011, 06:38 PM
 
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I'm so sorry to hear your news.  What a difficult time for your family.  My thoughts are with you and your daughter.


dust.gifFour-eyed tattooed fairy godmother queer, mama to my lucky star (5) and little bird (2.5). Resident storyteller at www.thestoryforest.com. Enchanting audiostories for curious kids. Come play in the forest!
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#13 of 66 Old 12-15-2011, 06:53 PM
 
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I'm so sorry that this has happened!  I would advise not lying to her, not even a little white lie (as is so tempting).  Know that it's OK to tell her that you are scared/sad/angry (it will help her to feel OK about her emotions too).  I triple ditto the Child Life specialists.  They are amazing amazing people.

 

You could show her pictures of her brain, and tell her that there are cells in her brain which are growing very fast that shouldn't be there, and that she is going to have to have medication to help it go away (you can then get into that the medication might make her feel really sick before she feels better).  If you are dealing with a paediatric specific hospital, your health care team (RNs, MDs, social workers, etc) might have ideas on how to explain this to her too.  She doesn't need the complex explanation.  Kids are *amazingly* well adept at dealing with explanations.  When I was volunteering at the Ronald McDonald House in my city, I had a little boy run up to me (he was only about 3 or 4), exclaim "I don't have any platelets!" and go running off again, seemingly unfazed by the information he was sharing with me.  

 

I wish you the best!  I'll keep your family in my prayers.


Me (29) and DW (32).  Taking a long break from TTC, back at it sometime in 2015/2016.  2 fur babies cat.gif cat.gif, Mustang and Anastasia.
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#14 of 66 Old 12-15-2011, 08:26 PM
 
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Sending you prayers and strength...

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#15 of 66 Old 12-15-2011, 09:14 PM
 
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I am so sorry that your sweet girl, your family, and you are going through this. I have no advice, just prayers and hopes for you and your little one.
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#16 of 66 Old 12-15-2011, 09:39 PM
 
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I am so sorry.  I can't imagine how you must be feeling or how worried you must be about your sweet little girl.  Very best wishes and healing thoughts to you and your daughter.  You are in my thoughts and prayers.


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#17 of 66 Old 12-16-2011, 03:14 AM
 
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I couldn't read and not reply. hug2.gif I am so sorry your sweet baby has to go through this. Sending her my best wishes and hopes.

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#18 of 66 Old 12-17-2011, 02:45 PM
 
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Thinking of you and sending love to your family during this difficult time. hug.gif


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#19 of 66 Old 12-21-2011, 02:55 AM
 
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Prayers and healings for your dd.

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#20 of 66 Old 01-01-2012, 05:39 PM
 
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I hope that you have the support that you and your family need. You are all in my thoughts and sending lots of good healing wishes to your daughter!!!


Mama to my 2 boys
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#21 of 66 Old 01-01-2012, 07:57 PM
 
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Sending you and your daughter healing thoughts. As others have said seek the assistance of a Child Life Specialist and as hard as it is, take care of yourself as well.


Mothering since 1992...its one of the many hats I wear.
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#22 of 66 Old 01-01-2012, 10:46 PM
 
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I'm so sorry.  Wishing you all the strength and grace you need, and then a little extra.


lovestory.gif   And on 09/23/2011, we were three;  husband, daughter, and me!

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#23 of 66 Old 01-03-2012, 05:10 AM
 
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I am so, so sorry. greensad.gif I will be praying for the best possible outcome for your daughter.
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#24 of 66 Old 01-03-2012, 03:15 PM
 
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hug.gif No words, just hugs. I'm so sorry!

Formerly known as "JessicaRenee".  hang.gif  Single mama to Jude (Sept '09)!  biggrinbounce.gif

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I'm so sorry. Ill be thinking of you and your daughter.

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#26 of 66 Old 01-04-2012, 01:18 PM
 
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hug2.gif Praying for you and your precious daughter during this time.


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#28 of 66 Old 01-06-2012, 11:49 AM
 
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no words, just thinking of you and your daughter


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#29 of 66 Old 01-08-2012, 10:44 PM - Thread Starter
 
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Thank you everyone. We are doing a little better with the whole ordeal. I guess getting used to it a bit more. Its day to day, moment to moment. We spent our new years in the ICU with her, she had a seizure the night of new years eve, and the on the day we where released my grandmother passed on our way to see her. Its been a rough start of the year to say the least.

 

Thank you for all of the well wishes and prayers/energy/thoughts.

 

And thank you for the advise. We have looked into a child life specialist to help, she is supposed to be possibly coming over and helping to talk to Maddie. I'm not 100% confident in the team that we are working with as far as support and ability to actually fulfill their promises. But that's all for another thread......

 

Its amazing how hard it is to find resources and support for children with brain cancer, and especially with GBM. Its almost impossible to find medical info, there is a TON of info on adult GBM, and they recently found out that what they thought where 2 forms that where the same, are actually different in adults vs children......so that changes everything.

 

But anyway, wanted to give a small update. Thanks again for your listening ear.


Melanie- Mama to my super hero daughter superhero.gif bravely battling brain cancer. ribbongrey.gif ribbongold.gif  www.fightformaddie.com  and expecting 1sttri.gif 1/13!!!!

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#30 of 66 Old 01-18-2012, 04:54 AM
 
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Melanie, I couldn't read and not reply. It's safe to say that this is every parents worst nightmare. When my dd (2) had a seizure, the worst thoughts crossed my mind (tumors etc). Thankfully she seems to be okay and it has been 6 months since the seizure with no further issues... I would be lying though, if I didn't say that I'd absolutely break down if they found something on her upcoming MRI. I go to sleep scared she won't wake up again (for this very reason I HATE bedtimes). I don't know how you are coping, but my sincerest thoughts and prayers are with you and Maddie. If you ever need to talk, please don't hesitate to message me. Thinking of you and sending hugs your way. hug2.gif Please keep us updated.


 

Me:  run.gif  DH:  hammer.gif 

 

Our babies:  reading.gif  blahblah.gif energy.gif moon.gif and a  stork-suprise.gif  coming in July

 

 

 

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