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My poor little girl...

Apr 01, 2010 - 26 comments

Saturday evening my daughter woke up screaming and crying uncontrollably. She was unresponsive and very weak. Her arms and legs were limp and she was is hysterics. We called the ambulance and they brought us to Childrens Hospital. In the ER she was compalining of a headache so they did a CT scan. An hour later the doctor came into the room and said they had found a mass in the right ventricle of her brain and it was blocking the flow of spinal fluid causing backup in the brain which was causing pressure aka the headaches. They admitted her that night to the PICU to keep a close watch on her. She went into surgery tuesday morning at 7:30am and was back in her room at 4pm. They were able to remove the entire tumor however part of it was attached to the brain so she will need further treatment to keep it from regrowing. The preliminary diagnosis is Primitive Neural Epidermal Tumor. Without treatment the survival rate is very low. So we are opting for treatment. They said that she would probably have to have chemo or radiation once a month for a year and CT scans every three months for two years.

I am jus beside myself and don't know what to do. I have had maybe 5-6 hours of sleep in the last five days being here at the hospital. I am eating every chance I get because I know that I need to stay healthy for the baby. Docs say she is looking good. She is recovering well. She has a drain coming out of her head and a pick line in her arm because she blew two IV's in the first two days. She hates the tubes and hates that she has to use a bed pan. She has some weakness in her left side so she is getting physical therapy everyday. Her center of gravity is off, she has a hard time sitting up straight unassisted and when walking she has to be assisted as she leans to the left.

The outcome looks okay but we are still waiting for the pathology report to come back and give us an absolute answer and plan for the future.

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by Heatherm4, Apr 01, 2010
Oh my!! I'm glad you got her to the hospital and they were able to get that out before it was too late. I'm sorry she has to go through this. She will be a fighter though!! Take care of yourself and keep us updated!

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by HeatherLF16, Apr 01, 2010
Your poor little girl.  I am so glad that she is OK.  I am very sorry that you have to go through all of this while you are pregnant.  You girls are in my prayers!  xoxo

Avatar universal
by mamajune, Apr 01, 2010
.Have faith in God that she will get better .God does't want any of his children to suffer .Take care of yourself and the new baby .Ask the nurse if you could have a Geri-chair in your room .They are like lazyboys and maybe you could rest better in it.Also you need to keep your  feet elevated and the chair should have a foot rest  .  I'll pray for all of you.

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by krichar, Apr 01, 2010
Oh my goodness!!!!!! Your poor sweet little girl. I am so sorry you are going through so much in your delicate state. I am glad to hear she is doing better but will pray for a full recovery. You should try to get some rest and take care of yourself...not just for the baby you are carrying but you need to be strong and healthy for her as well...

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by feather2e, Apr 01, 2010
You have been through so much already .I am just glad she is doing a little better.You are both fighters and will get through this.Sending prayers for you all.

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by SoCalTricia, Apr 01, 2010
Reading this just felt like a kick in the gut. My two-month old died of a brain tumor six months ago. (His was a gliosarcoma.) You are lucky in that you caught it in time for treatment, and your daughter was able to tell you about her pain. I pray that her treatment goes well and your little girl will be a survivor...I pray that you get the miracle we did not. Just love on that little girl every chance you get, because life is very uncertain...good luck to you and your family!


Avatar universal
by julianovak, Apr 01, 2010
OMGosh! i am soo sorry you are going thru all of this! I dont want to imagine how i would feel. Your child will be in my prayers.

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by swampcritter, Apr 01, 2010
What a frightening thing!

Its gotta be so tough on a little person to get poked, prodded, thrown into weird machines, put under, and then on top of that bear all the symptoms of a tumor. Heck, its hard for an adult to go through all those things.

Its impossible not to be incredibly emotional but -- many tumors are responsive to treatment and a growing body has an unbelievable ability to heal. So Swampy bets the long term prognosis is good.

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by ashleighnb, Apr 01, 2010
Thanks for all the prayers and kind words ladies. This has been very hard for me and my daughter especially. She said she wants to be her old self again. It was so sad. And watching her learn how to walk again is killing me. Docs say she will get her drain taken out of her head tomorrow hopefully so she will be able to get out of the bed more and work really hard on her rehabilitation.

SoCalTricia - I am sorry about your loss. No child should ever be put through this.

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by houseofgirls, Apr 01, 2010
I am so sorry your little girl is having to go through this.  I don't think I have ever spoken to you before, but I want you to know that you and your family are in my thoughts and prayers.  

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by butterflybabies, Apr 01, 2010
I am so sorry to hear about your little girl! I am glad that they were able to remove it...I will pray for your family! Big Hugs to you and her!

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by Kara_robbie, Apr 01, 2010
Omg I am so sorry to hear about your daughter! How very sad you must be! Yes make sure you keep yourself healthy for your baby and your daughter!

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by KarenDiane, Apr 01, 2010
I feel so bad for Destinee. I will certainly pray for her, and you as well. Do you have family that can support you emotionally? I hope you aren't going through this alone.

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by SoCalTricia, Apr 01, 2010
Wow...I can't believe she's even up and walking around just two days after brain surgery! She must have handled the surgery well and not have a lot of swelling on her brain. She sounds like a tough kid...I'll keep you all in my prayers.

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by ashleighnb, Apr 04, 2010
Hey ladies...just an update on destinee. She was released from the hospital yesterday. Her preliminary diagnosis is Atypical Teratoid/Rahbdoid Tumor. Its the most rare brain tumor in the world only just discovered in 1987. There have only been about 60 cases in the world and unfortunately only 14 of those cases are still alive. The prognosis is not good (2-5 year survival rate with treatment without treatment it will come back within 6-12 months and if it comes back there is nothing they can do). All of our family and friends are there for us and helping us transition. We go thursday to talk to the oncologists for a final diagnosis and treatment plan. She will probably begin treatment in within the next three to four weeks. She is devasted because she is missing some of her hair and can't be independent as she usually is. She is mad that she won't be going back to school and won't be able to go to her tumbling and ballet classes. Our lives have been turned upside down and it is really hard to adjust to our new way of life. Our ultimate goal is for Destinee to be the number 15 survivor in the registry they have for AT/RT.

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by melimeli, Apr 04, 2010
oh my, I am sooooo sorry and am praying for you right now as we speak...  I suggest you set up a caringbridge  it is a great way for you to get support as well as prayers for your baby girl...  let us know if you do I follow a couple of kids on there...   Be strong an cherish every moment...

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by DMarie919, Apr 04, 2010
Wow.  I am sorry to read all of this :(  Pray pray pray every day.  I'm sure this time is going to be very exaughsting for you both physically and emotionally.  Make sure you take help from friends and family if they offer.  You will need your strength for your daughter.  I pray she will be a fighter and a survivor.  No child or parent should have to go through this.  Ask God to walk with your in your's a tough road to travel alone.  

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by Juliaschill, Apr 04, 2010
OMG I am so sorry! I wish there was something I could do. I will add my prayers to the list!!

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by k10road, Apr 04, 2010
Wow...I am so sorry.  It's I am trying so hard to get pregnant, and it is so easy to take for granted the ones that are already here on this Earth with us.  I pray that Destinee is the #15 survivor.  Take care of yourself and pray all day every day.  I will be praying for your family.  

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by raquelplus2, Apr 05, 2010
omg...iam sooo sory. youve been goin thru sooooo much lately n i feel sooo bad n i wish i cud help or give you a miracle :(. i hope your lil girl is the 15th survivor i realy do...i dnt evn no wat to say because i dnt thnk ne1 can say nething to make you happy....

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by Heatherm4, Apr 05, 2010
I too pray that she is the next person to overcome this!! I'm so sorry!! I hope you and her have all the love and support of the world!!

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by turkee23, Apr 05, 2010
god is good and we are all praying for her speedy recovery ...dont worry she WILL be that 15 survivor you got a strong little girl on your hands!...god bless you

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by Jenny101407, Apr 05, 2010
I am sooo sorry you all are going throught this. She seems like she's a strong fighter..I will pray for you all and I hope she gets stronger and fights this all the way and becomes # 15....God Bless you and your family((HUGS))

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by feather2e, Apr 05, 2010
I am sorry to hear your news, but I believe that you are both strong she she will overcome this.I know you must be overwhelmed and I will keep your family in my prayers.

Avatar universal
by julianovak, Apr 05, 2010
SSSOOO sorry im keeping your family in my prayers, especially your precious daughter. I can not fathom going thru this.

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by jjsh44, Apr 05, 2010
I am so sad for you right now,  I am glad they say she is looking good and she is recovering well, that is very promising.  I just can't even begin to imagine watching you baby girl suffering like she is, I am so so sorry.  Please know you are in my thoughts.
Sending you much love and strength during this time

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