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Rachel forever 6 years old 
January 29,1998 - October 12, 2004
Welcome to Rachel's web page. It has been provided let others know about our journey. Rachel was diagnosed with an inoperable malignant brainstem tumor, a diffuse intrinsic pontine glioma on 7-27-04. We were told she had 2 weeks to 2 months to live. Her type is extremely rare with only about 150-250 cases diagnosed in the U.S. each year and is known as the worst type of childhood tumor with the worst prognosis. I have been told that it is not hereditary and the cause is unknown. I have also been told it is not cause by anything that the parent did. I never thought that something like this could ever happen to my child. Now I know that this can happen to anyone. She went to be with God 10-12-04
The brainstem controls our involuntary functions. Tumors in this area has horrible effects. It can affect the ability to swallow, see, hear, circulation, heartbeat, respiration, blink, talk, walk, urinate, balance, coordination, hunger, thirst, breathing, body temperature, blood pressure, arousal and counsciousness, sleep and awake cycles, attention and concentration, and other basic body functions. But these kids remain intelligent and therefore its very frustrating for them.
Rachel lost her ability to smile, laugh, chew, swallow, walk, sit, and see. She was nearly blind. She lost the ability to feel her face and taste. She lost the ability to hold her head up. She went backwards in life with her abilities, like an infant, but yet her intelligence stayed the same.
Rachel's determination served her well when she needed the most. She kept on adjusting to her limits. She never complained. Rachel made me so proud of her and her courage and strength amazed me. Rachel was a kind, compassionate, gentle child. She always thought of others first and she loved making others happy. She had the greatest sense of humor and laughter. I loved to hear her laugh. I am so proud and honored to have been Rachels mommy. She will always be my hero. I love you Rachel.
one year ago today. 1 month 6 days before diagnosis.
danielle one year after above photo. taken in same spot.
Her 6 year old birthday. I didn't know it would be her last one.
My girls having lunch together. Typical day for us.
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Ask My Mom How She Is
My Mom, she tells a lot of lies
she never did before.
From now until she dies,
she'll tell a whole lot more.
Ask my Mom how she is
and because she can't explain,
She will tell a little lie
because she can't describe the pain.
Ask my Mom how is she,
She'll say "I'm alright."
If that's the truth, then tell me,
why does she cry each night?
Ask my Mom how is she,
she seems to cope so well.
She didn't have a choice you see
nor the strength to yell.
Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For Gods sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how is she
she'll lie and say she's fine.
I am here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.
On the day we meet again,
we'll smile and I'll be bold.
I'll say, "You're lucky to get in here, Mom
with all the lies you told!"
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click button above
I just wanted everyone to know that I just updated my PHOTO GALLERY. I put a new album in it and it is labeled DIAGNOSIS/STEROID DAYS. It is photos of Rachel's final weeks. Click the PHOTO GALLERY button above. I will be adding more later.
Now I have to vent. I hate what this tumor does. It is a sneaky bastard. You see that very first picture at top of my page? That picture was taken 3 months before diagnosis day. That tumor was killing my child even then. She didn't look like a terminally ill child in that picture and she was. Sneaky!!
I hope noone ever understands what I am about to write.
During Rachels illness, every morning for eleven weeks I woke up thinking is my child dead. Did she bleed out last night. I go to her room afraid...then I am glad I still have her. Then I wonder what did she lose today. Can she see, hear, swallow, walk or talk? That is how every morning was for eleven weeks! Everyday she lost something. Piece by piece that tumor robbed her. She couldnt even taste. When I would comb her hair, I cherished every stroke because this may be the last. Every sound she made I cherished because it may be the last. As I brushed the back of her hair, I couldnt help but think that monster is right there. It is right there and I cant do a damn thing about it!
As she lost abilities she would reassure me. She lost her left side of her body first and she said "thats ok because I can use my right hand."
She was grateful for what she did have. That is something that most grown-ups dont even have.
So when I have a bad day...I try to look for something good because that is what my child taught me and I want her to know that I was listening and I am trying my best to honor her.
Since Rachel's death, some people have said some things to me that really hurt me and do not help. Someone told me that because she had a brain tumor that its good that she died. I was also told that I am young and can have more. I was told my site is hurting others. I have been told to move on. I have also been told that I am keeping others from healing because I won't move on.
I am getting tired of being analzyed and judged by those who never loss a child that knows it all. From now on I am thinking of my emotional health. I can't take the negativity. I will go to those that make me feel good and support me in the way I need. Maybe that is selfish of me but I dont care. I will avoid those that are not good for me right now. I have to for me. I can't pretend that everything is ok. I can't be who I used to be. I am forever changed. I finally know that we don't "move on" but we learn to cope.
I can't put it all behind me. I have to deal with it. I need to talk about Rachel. I like to talk about her and cry and laugh about her with someone. I have to face it all in order to cope. I don't want to be told how to grieve or receive negativity. What I need is support and understanding.
Journal
Saturday, July 26, 2008 3:36 PM CDT
Four years ago today, I picked Rachel up at camp, she didn't look right at all. She was very drunk/hung over looking. I had no idea what was about to happen. Right now, it is 4:45 pm and I can still remember like it was yesterday. Rachel vomited, I called my sister, then steve, and then the doctor.
Later we were sent straight to Children's Hospital of Philadelphia.
I tried to pretend that this isn't bugging me or on my mind. But that is impossible to do. It takes its toll.
Pretending is so draining. The other day, I told my husband that I want to up and move to the midwest. He asked "why"? I said "because we can, why not?" He knows what I mean.....and so do the parents that have lost their kids too.
Just to feel free.
Tomorrow is the 27th, the day our lives changed. The grieving really begins at diagnosis. I really never saw Rachel like I knew her again. I remember crawling into that hospital bed with her with that knowledge that she will die. Looking at me with those innocent eyes and I fought so hard to not crumble. I was so afraid.
I miss her so much and the thought of never seeing her again is agony.
I have my other two girls, Danielle and Stephanie. Thank goodness for them, they are my world. They are my sanity.
Watching Danielle and Steph play lately is such a familiar feeling. And it is very nice, a breath of fresh air.
Today, Danielle and I went shopping....big girls day shopping with no men and no babies...lol. Yes, me and Rachel used to do that too.
I really had fun with Danielle today and she had fun too. We were in the same shopping center that I shopped in with Rachel, it has a lot of great stores...but, it faces the cemetary where Rachel is buried. Which is ok. I am getting used to that.
When we got home we hopped in the pool. Danielle told me she had fun and wants to do this more often...she is a shopper, loves it.
Danielle is riding a bike w/out training wheels now. Rachel never did. Danielle's balance is real good. In the world of DIPG's when we see our other kids ride a bike w/out training wheels....its "oh good, her brainstem is healthy". Its sad but true. but believe it or not it is a normal reaction that brain tumor parents have.
I will post some pictures a little later of the girls at the beach.
jeanne
Read Journal History
Links: http://www.medicine.cmu.ac.th/dept/radiology/pedrad/brainstem.html
http://www.roryd.com/press/Childrenspr.htm
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