winchy.com - Welcome to Maddie's Story

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Any feedback left via this website may be used below.

This is a selection of the tremendous amount of messages we have received from around the world.

Hi Neil and Georgia,

Im the Shelley that looked after Maddie at Sandringham Nursery School.

I pop into the site every month or so to have a look and I wanted to let you know that I (well we, Laura and I still catch up regularly, and we were just talking about Maddie last week) think of you guys regularly.

I often reflect on Maddie and her times with us at child care and I thought I would drop you an email to let you know that I still think of you guys as well.

Take care, lots of love always

Shelley

I have done a semester long project on your website, and the life of your little girl for one my classes for nursing school. You're story is so inspiring. Know that you are in my thoughts and prayers.

Renee Klompien, Great Falls, Montana, USA

Hello, I've read just a couple of the feedbacks that you have received. And, like most, I too have stumbled onto your daughter's story. I was looking at information on astrocytomas, my Dad was diagnosed in Jan 2003 with GBM4 and passed away in July 2003.

I am so sorry for your loss

Linda Huffman, Arizona, USA

God Bless for finding the strength to share your heartbreaking story. I to came upon this story in looking for answers to give my son who is 15 and he is loosing his dad to Gliobastoma he's 43, it's amazing to find how quickly your world can become upside down. Thank you for sharing because it gives information that I wouldn't have otherwise gotten. I pray for your healing which I'm sure will be a life time.

God Bless Paula Bass

Let me say that I am writing you with a river a tears. The story of your "angel" Maddie brought back all the bad memories for me about my mother. My mother passed away from this monster on April 2, 2006, can't believe it will be a year. Sometimes it seems longer and sometimes like it just happened yesterday. I am still angry as to why a woman who was so full of life and healthy had to get this cancer. You will be in my thoughts and prayers and I know that mama is with Maddie and that they are the most beautiful angels in heaven. It feels good to let out my feelings to someone that knows exactly what I am feeling. I know it is almost a year that mama died but it seems like all those feelings are resurfacing. It won't get easier because I miss her more each day. Thank you for Maddie's story; she and mama will continue to be my inspiration for getting through each day.

Best regards, Suzi Gradillas

I was very touched by your web site. My uncle of 60 yrs old died back in 2002 of the same type of brain cancer as your daughter. I was very close to him and still think of him often. He died too young and was such a gentle good hearted person. I dont know why god takes such precious people in our lives but I would like to wish you and your husband the best in the future and pray for our lost loved ones.

John

I too lost a loved one to GBM, my father, just recently Feb 3, 2007. I cant help myself to be sitting here on the internet searching for the what ifs and only ifs, like I can bring him back. I know in my heart that I did everything I could for him, I just want him back, in the sort of way you want Maddie back.

Thank you for shedding a pale light upon my journey.

Lani

I found your site while looking for information on GBM. A member of my family was diagnosed today with stage 4 GBM. I am so moved by your story and by your courage for sharing it. I am a mother of a two year old boy, and my heart aches for you. It was so painful merely to read your story that I have no comprehension of how difficult it must be to live it. Thank you for sharing Maddie's life and her death

Sharon

I read your Maddie's story tonight. It was raw, beautiful, and I thank you for having the courage to write it. My uncle was diagnosed with this same type of cancer last week. He has been sent home with hospice (home health care) for his last days. From your story, I recognize the same , end time symptoms and expect his day of crossing over will come sooner than predicted. I thank you for your honesty. I thank you from the bottom of my heart.

Leeanne T

What a courageous battle you have been through. I was not looking for such a heart breaking story when I came upon Maddies story. I was looking for information because a friend of mine has be diagnosed with GBM and I wanted to educate myself on what he is facing. Thank you for being brave enough to share what you have endured. It has not only touched me deeply, but educated me incredibly. All that I read before your site has been very discouraging. The survival rate is not encouraging and I will make it a goal to never take a second of my life for granted. I will look at my friends life so differently. I will also be grateful for the goofy things my 20 year old does and feel blessed when he makes me crazy. Thank you for sharing your life with a world of strangers. Your little girl has touched this stranger, and your story has touched my heart.

God Bless you both,,,,,,and God Bless little Maddie

Shelly

Thank you so much for your story, one of my friends was diagnosed last year with the same diagnosis as Maddie. I am so sorry for your loss, but know that in telling Maddies story, you bring comfort to many of us trying to navigate all the information and emotions involved. May you have peace and feel surrounded by love of your friends and family.

Nancy Mattingly

Hi there. I know your website about Maddie was done a few years ago, but I'm thankful for the internet and thankful her story is still on the web. I just spent the last 2 hours reading her story and also browsing other information on your webpage.

I originally did a search for "glioblastoma" and found your website. I live in the United States. First let me tell you how deeply sorry I am to read of the loss of your little girl....her story was very touching and she was a really good little fighter with everything she had to go through.

This may sound insignificant compared to what you've gone through, but I at least wanted to let you know that my dad was diagnosed with a brain tumour last week (he's 55 years old), and they did a biopsy two days ago to find it was a stage 4 glioblastoma.....they've only given him about 11 weeks to live. It came on very suddenly, and is extremely aggressive and growing very rapidly. He's going to try to have radiation and chemo but the doctors told us it would only maybe buy him a couple weeks of time.

Another commonality from your story. My daughter was diagnosed with hydrocephalus (too much fluid on the brain) when she was only 2 weeks old, and had to have a VP shunt put in place. What we thought was a routine 2 week check up turned out to be a 3 day visit in ICU.

I just wanted to say thank you for your website. It has some really great information and Maddie's story is very touching. I will say a prayer for your entire family. Thanks again. :)

Shannon, Tulsa, Oklahoma, USA

I am very sorry about the lost of your daughter. I have learned in the past two months what Glioblastoma Multiforme is and what it can do. I have some friends that lost their 5 month daughter June 3rd, 2006 to it. My prayers and thoughts are with you.

Katie Taylor

OMG, my heart goes out to you guys : (

I came across your site. Touched me. Such a short life but such wonderful loving parents to take care of her. Some kids are so unloved for years and years and Maddie got to feel SO much love in such a short time. Makes me appreciate what I have, makes you think, you never know what is in the cards. May God help you through these years.. and know you will see her again in heaven. God Bless!

Connie

Hello – I just wanted to email you and let you know that I stumbled on Maddie’s website this morning. My good friend died last week of GBM and it seems I’m on the internet all the time trying to find ways to help her husband (also my good friend) cope with this devastating loss. She left behind a three-month-old daughter as well.

I have a two-year-old baby girl named Kaylynn – she’s our first and only right now and she means so much to us. I kept picturing Kaylynn as I read Maddie’s story and couldn’t imagine how difficult it really was for you. Maddie sounds like a true hero, and she is inspiring to me!

I’m so sorry for your loss. Thank you for sharing her story with everyone. It helps to read about other families who have gone through this.

Love,

Stacy Harman

Indiana, USA

Hi,

I just want to say I pray for you both and I was so upset reading your story and looking at your beautiful daughter.

God bless you and may you find the strength to carry on each day.

Kind Regards

Kim

I have a dear friend recently diagnosed with GBM and was browsing, researching and stumbled upon your site. Thank you for sharing so much.

Robert Schleinig

I came across Maddie's site today and I'm sure much the same as most people I had a good cry! What a beautiful daughter you had, she really does look like such a sweetie in those photos. I know that nothing anyone says will make anything feel better, even a few years on. I have just been diagnosed with lymphoma, fortunately stage 1, and I found Maddie's story inspirational. To keep smiling through such pain is something kids seem to do so well where adults fall and lapse into self-pity, youngsters pick themselves up and keep going. Before I start waffling, I just wanted to say thank-you for your website, and I will be thinking of you and your family still. There is no reason for some things happening; a lot of the world doesn’t make sense at times. Take care,

Rose x

I am sorry about your little one. My name is Linzi. I am only 18 but I am steel so sorry. Every since I was 11 I wanted to do more. My best bud died from cancer. I now work with young kids who have cancer art and talk to them. I am a help worker at St. Jude. I love it more than words can say. I hope days get better for you each day I know it has to be hard. Even I cry thinking about it.

Linzi Lipinski

I came across your daughters’ web site while looking for more information on hydrocephalus and vp shunts.

Our daughter, Lea, was diagnosed with hydrocephalus at 2 wks of age. We rushed her to Devos Children’s Hospital in Grand Rapids, Michigan USA. It was so difficult to watch the anesthesiologist take her thru the operating room doors. Just one image I will never forget about this ongoing situation.

Even though our daughter is doing very well at 8 months old, I see what you and your family endured and think to myself, I'm glad we only have to deal with hydrocephalus. I had to go thru every one of the photo galleries you posted. I will no longer feel like I am taking too many pictures of our Lea. Your daughter was absolutely beautiful. Our prayers will go out to you and your family.

Thank you for sharing your experience, it puts so many issues into perspective.

Kristin Cowger

I was searching for info about VP shunts (my wife has one that is having problems). I read your story about your beautiful little Maddie and my heart goes out to you. You are so brave for sharing this experience.

I hope you have found some peace and happiness, you deserve it.

God Bless You and Maddie:

Joe Vitali, Tulsa Oklahoma, USA

This is a truly incredible story. It really hits home because I just found out my brother was diagnosed with GBM 4 he is 39 and a researcher of brain cancer - can you believe it. You have touched my heart. Thank you for being brave enough to write.

Lori Beth

I know you haven't updated Maddie's web site for a while, but I just wanted to let you know that you are still often in my thoughts and I still like to look at the wonderful photographs of a very special little girl.

I lost my darling husband Tony to GBM in July 2001, and is still feels like yesterday, though I try to celebrate his life and the life we had together rather than the bad times, but it is not always easy, especially at birthdays, which I know you have just gone through.

With very best wishes.

Janice Feilden

Hello Maddie's mummy and daddy.

I have just stumbled upon your very moving tribute on your webpage to your daughter Maddie. I have just completed a website for my little girl Rachel who also lost her life to a glioblastoma multiforme brain tumour on 30 March 2004 and that is how I came to find your site. My little girl was a bit older than Maddie - she was 8 years old but I felt and fully understood every word you had written in your tribute. All the fears and vulnerability you expressed I could truly understand and empathize with. That is exactly how we felt, and are still feeling as we have just completed our first year.

Thank you so much for your words, it helps us to know we are not going mad as we so often feel we are.

I hope you continue to find the strength to allow you to continue as best you can. All I know is that "carrying on" without my little girl is the hardest thing I have ever had to do.

God bless.

A wonderful website.

Thanks for sharing your very personal story. It is an invaluable resource for sufferers of GBM and carers of people with GBM, and very touching.

Dan

Hi my name is Kathryn and I came across your site and read about your wonderful daughter. I was diagnosed with gbm grade 4 last year not even a month after I moved into my first apartment. Fortunately in my case they were able to resect it all and it was encapsulated. I am a patient at st.jude children’s research hospital in Memphis Tennessee. I finished with my treatment about a month ago and am doing great. I am in college and working and going on with my life. Your daughter was absolutely beautiful and extremely strong. This is a horrible disease that I only pray that one day there will be a cure for it so that no one else has to suffer the way that we have.

Love and prayers

Kathryn

I enjoyed so much reading about your lovely daughter. I had put in GBM in the yahoo search engine and came up with your site. I have lost a father to GBM ('94) and now..We are days away from finding out if my husband's fight with AA2/3 has progressed to truly being GBM. He is a four and a half year survivor..And is fighting with everything he has...my heart just goes out to everyone fighting this disease...and for the caregivers that are doing it/done it.

You gave your daughter a lovely site. What a loving tribute to a beautiful little girl. I pray one day..They will figure out what will stop this horrible cancer.

Jocelyn (Texas, USA)

Hi my name is Michelle. I work at Boulder Community Hospital in Colorado. I was working on a research project about Shunts and was drawn to your story. I am surgical scrub nurse and work mostly in neurosurgery. After reading your story I cried for several hours. It truly touched me. I don't really know what happens to patients and their families after surgery. Your story provided a lot of insight for me. Your strength through the illness of your daughter is truly miraculous. I also have a daughter name Madison. I couldn't imagine being able to cope the way you have if anything ever happened to my daughter. I am so sorry for your loss. I just felt compelled to express my sorrow for your family.

Sincerely

Michelle

Just wanted to let you know that I am thinking of you both during this difficult time. From the moment I was introduced to your web site through Marg Strangmans web site I became one of your fateful prayer warriors as you traveled your journey with Maddie. On December 12, 2002 my mother lost her brave battle against the same terrible beast. The memories are as vivid as they were 2 years ago. It is a difficult journey to march on without the one we love so deeply. Just know that across the waters many miles away you have someone keeping you both in her thoughts and prayers.

Sandi Richard-Mohamed

The University of Western Ontario, London, Ontario Canada

Just wanted to say thank-you for sharing your story. This must truly be a complete and utter devastation. I was poking around the web looking for some info on a school paper, hoping to find a caring parent who took time to document treatment through what must have been just the most awful moments of one's life. Thank you for sharing God Bless, and may your daughter find peace away from this horrible illness.

Stay Strong,

Jason Petrishin

Hello I came across Madison's website through a website that holds all oft these very special children battling some sort of cancer. My son's is also on this site. His name is Kennedy and also suffers from a GBM.

I read through a part of your story and you are so right to say no books, doctors, or any type of other info can helped, but I what I really want is a "real life account" of battling this horrible type of tumor that took your baby’s life and now in short time will also take my babies too.

When or even if you could, would you mind sharing with me possibly some "landmark" type of occurrences.? I realize that no matter how long Madison's death occurred it is a scar that probably will never heal. I just need something to hold on to per say. Kennedy is on hospice and has been since January 9 of 2004. He is such the fighter and has always gone past what doctors or whoever have attempted to estimate. I do no though that within time his body has no choice but to grow extremely week and allow God to take him home. I have always had a MRI or a clinic visit to gage things on but now over the last 7 mths there hasn't been anything, I have been watching my baby die. If you could and I guess I should say don't mind, the landmark keys would help me so much.

I also want to say Maddie's website is simply beautiful just as she was too. :)

God bless you all and take care

In Christ, Rachael

I'm sorry to hear of the loss of little Maddie. The site gave me a lot of insight into brain tumors and the medical work involved. However I’m not sure if it's a positive site especially for families who are believing and hoping their loved one can beat the tumor. Only today I was told that my brother Eric, who is 26, has found out that his brain tumor has grown back after 23 years of being under control. He also received extensive treatment at the Royal children’s hospital in Melb, also having the shunt placed inside the brain. All day I’ve been telling myself it's going to be ok. But after reading Maddies story I’m left with an emptiness feeling in my heart! I know they're only telling their side, and I’m not angry. I shouldn’t have read it, maybe state that it's a sad story in future.

Colin & Suzanna

I came across Maddie's website while doing a bit of research on nasogastric tubes. I just felt the urge to pass my condolences to you and your wife. Maddie sounds like she was an amazing little girl with such strength and good humour. I do not know of any adult that would be able to face her situation with such apparent strength. I suppose that part of it came from trusting in her parents and part of it was just her own character? I don't know - you would know you own little girl best. For what it is worth, it sounds as though Maddie was so lucky to have such a nurturing, loving and wonderful family.

I wish you and you wife all the best for the future. I hope that you have passed the worst of your grieving together and are able to look forward to the future. I wish I could have known Maddie while she is alive but I feel touched that I was able to read her story and know that such courageous person lived for a time. Thank you for that.

Kindest regards,

Fiona Clare

I was deeply touched by your website that is both a memorial and done in honor of your beautiful daughter. I read every journal entry and by the end the tears were so heavy I could hardly see what I was reading. She was and is so beautiful my heart goes out to you.

My wife and I lost twin boys at birth years ago but as much as that hurt, I cannot imagine the pain that you feel. All I can say that as time goes by, the pain will not be as bad but the remembrance will always be there.

One cannot explain the feeling of watching your child, one who you love more than anything, pass before your eyes. You will meet others who are going through what you have gone through and you will be able to bring them some degree of comfort as you can relate. People may say that they know what you are going through but we both realize that haven't a clue. I have spoken to numerous parents who have lost children and by doing so it has always made me think of my boys.

Thank you for your site and it is my prayer that you are doing better and may you remember you are never alone. She will always be there.

Doug Reader

My brother has just been diagnosed with a grade 4 brain tumor, we are still in the very early stages of what you have been through. He is 34 and is a single dad to a 10 and 12 yr old boys. I myself have a 3yr old and 7 yr old and when I kiss them goodnight tonight we will sing an extra song for Maddie, your little angel.

Your web site is very sad but helps people in my situation enormously for which I will be forever grateful. I cannot comprehend what you go through every waking moment but my thoughts and prayers are with you.

Love Vicki, Alstonville, NSW

Your Maddie was a beautiful girl, and this is a beautiful, moving site. It tells a heartbreaking story. I wish I could relief some of your sorrow, although I know it cannot be done. But I know what you are going through. Maddie's story made me re-live what our family went through during 2.5 years of heroic struggle, from the time my brother was diagnosed with GBM, until he passed away two years ago at the age of 51.

I can only hope that time will mellow out your sorrow, and that one day you and your family will be able to return to a relatively normal life.

Please be strong, and please accept my condolences,

Hanan Livneh, Tel Aviv, Israel