J a z z y  Wren
My battle with a Medulloblastoma
Brain Tumor
 

 

Hi, my name is Jazmin Wren. My friends call me Jazzy. I am three years old and I live in Melbourne, Australia. I was diagnosed with a Brain Tumor on October 14th, 1996 when I was two years old, and I have been having treatment at the Royal Children's Hospital ever since.

I know some of you have wanted to see some photo's of me, so my dad has scanned some pictures which you can look at if you like. Dad will tell you some more about me later. If you want to email me, send it to my Dad.
 

 
 

"Hi, Its me, Jazzy's Dad (Sean)." Jazzy was born on the 23rd of June 1994. She has two older brothers, Kurt who is eleven and Kale who is five. Jazzy had a fairly uneventful life up until the time that she started getting sick. I had managed to get a job in San Jose, California, with a great company called Cisco Systems. We were due to fly to the USA at the end of October, 1996.

Everyone was excited about the trip, and about living and working in a new country. Everything was organized, our furniture was sailing to the USA, we had rented our house out and sold our cars. We were living out of suit cases at the "in-laws" house, waiting for the big day.

Two months before we were due to fly out, Jazzy started to get sick. She was complaining of a pain in the back of her head and in her tummy. Very occasionally she would vomit for no apparent reason. We took her to several different doctors, all said it was a virus or swollen glands. None of them had any idea.

Two weeks before the big trip, Jazzy started to get worse. I took her to the local hospital on a Saturday morning, because she was very lethargic and vomiting a lot more. She was admitted to the hospital and a CT scan was finally done at 3.30 PM on the following Monday.

At around 5.30pm we were called into a room, the door was closed and we were asked to take a seat. Jazzy's paediatrician looked at both of us and said "I have some bad news, Jazmin has a Brain Tumor". I felt like the floor had been ripped out from under me. My wife, Helena collapsed on the floor, hysterical, and all I could think of was, that I was in the middle of a bad dream, and that I would wake up. But of course it wasn't a bad dream, it was my worst nightmare, and I was living it.

After we had managed to gain some composure, I asked to see the CT scan. What I saw was a large tumor almost completely filling the Cerebellum. At that moment, I thought that we were going to lose our baby. I couldn't imagine how on earth they could get something that big out of somebody's brain.

Five hours later we were in an ambulance and on our way to the Royal Children's Hospital, arguably the best paediatric hospital in the Southern Hemisphere. Our plans to go to the USA were cancelled, and thanks to the guys at CISCO, namely Joe Pinto and Tom McDowell, our furniture was sent back and it never cost us a cent. If ever there was a company I would give my "all" for, it would be Cisco.

Jazzy had an MRI done the next day and surgery was scheduled. Jazzy went through eight hours of surgery on Thursday the 17th of October 1996. The surgery was done by Professor Jeffrey Rosenfeld. This man saved my baby's life and I will never be able to repay him for that. I can also not say enough about the nurses and support staff in Ward 6 West, the Neuroscience ward, who gave Jazzy the most amazing care, and Helena and I the utmost compassion. They really are a dedicated, gifted group of people and we love them all dearly.

The tumor was as big as a small orange and was found to be a malignant Medulloblastoma . This is the most common of the paediatric brain tumors. Because of the malignancy, Jazzy had to then undergo many rounds of chemotherapy. An MRI was done in April of 1997, and we discovered that the tumor had returned, both in the original site in the brain and also in Jazzy's spine. The only option we had was to go for radiation therapy. This was risky to say the least because of the effects that radiation can have on the brain of one so young. We decided to give it a try because it was the only chance she had for survival. We were sent to the Peter Maccallum Cancer Institute where Jazzy underwent thirty radiation treatments to her whole brain and spine. A follow up MRI was taken on the 11th of September, 1997, and a new tumor was found in the frontal lobe.

The doctors then told us that Jazzy would probably not see Christmas. They also told us that there was nothing else that could be done. Fortunately for Jazzy, I didn't accept the finality of the situation, I then started searching the Internet for anything that could help her. I came across a clinical trial which had been completed in December of 1996, which tested a drug called VP16 which has been is use for some years, although this trial looked at administering the drug orally over a 21 day period with seven day breaks in between. I mentioned this to the Oncologist's and they agreed to give it a try, although they didn't think it would do much good.

Jazzy started the oral VP16 on the 20th of September, she tolerated it well with little side effects. Jazzy remained on the VP16 for three rounds, when another MRI was done on December the 4th.

I called the Oncologist for the results and I was told the news. The tumor in the frontal lobe had been reduced by 75% and the other tumor remnents were disappearing. We had been given Jazzy's life for Christmas. Jazzy is still on the VP16 as at the end of January. She is still O.K although we are having some problems with her blood counts. If all continues to go well we will have another MRI at the end of March, 1998.

Helena and I both know that the fight is a long way from being over, and that Jazzy's chances of survival are still slim. But we take each day as it comes. and cherish every minute.

Through this whole ordeal, Jazzy has had 100% quality of life, she had no deficits from the surgery, and she has had minimal side effects from the Chemo and Radiation therapies. This is one thousand times more than I could have hoped for when I was standing in front of the very first CT scan and wondering if she would survive the week.

Jazzy has given us sixty years of love and affection in the last eleven months, a love that I will feel and cherish for the rest of my life.

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Sadly, Jazzy's sweet life ended on the 14th of February 1998, on St Valentines Day, the day of love.

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Here is  an account of what happened in the lead up to Jazzy's death. I have also documented a description of Jazzy's funeral service as well.

 

 
 
See Photo's of Jazzy's Life .
 

See Photo's of our big holiday in Queensland.
 

See Photo's of Jazzy from the 8th of December 1997.
 

Photo's of Jazzy's Last Week of Life.  

Don't think of her as gone away
Her journey's just begun
Life holds so many facets
This earth is only one
Just think of her as resting
From the sorrows and the tears
In a place of warmth and comfort
Where there are no days and years
Think how she must be wishing
That we could know today
How nothing but our sadness
Can really pass away
And think of her as living
In the hearts of those she touched
For nothing loved is ever lost
And she was loved so much    

 BrainChild is an online support group which has been setup to provide emotional support to people who have been touched in some way by a Brain or Spinal Cord Tumor.