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My 4 year old daughter was diagnosed with a very aggressive form of brain cancer today........

post #1 of 66
Thread Starter 

   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. :(

post #2 of 66

No advice but you and she will be in my thoughts as you start this walk................

post #3 of 66

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))))) 

post #4 of 66

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

post #5 of 66

praying for you and your daughter...

post #6 of 66

I couldn't read and not respond...your family is in my prayers...

post #7 of 66

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.

post #8 of 66

I'm so sorry.  I'll be praying for you guys.  Children are amazingly resilient-- just try to keep focusing on her cure.

post #9 of 66
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
post #10 of 66

hug2.gif

post #11 of 66

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.

post #12 of 66

I'm so sorry to hear your news.  What a difficult time for your family.  My thoughts are with you and your daughter.

post #13 of 66

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.

post #14 of 66

Sending you prayers and strength...

post #15 of 66
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.
post #16 of 66

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.

post #17 of 66

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.

post #18 of 66

Thinking of you and sending love to your family during this difficult time. hug.gif

post #19 of 66

Prayers and healings for your dd.

post #20 of 66

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!!!

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