AUSTIN

August 24, 1995 - November 27, 2003





Austin was diagnosed with Neuroblastoma Stage IV on November 13, 1998. He completed nine months (eleven rounds) of chemo, followed by an autologus stem cell rescue and six months of Accutane. During this time he achieved "No Evidence of Disease" for fifteen months before his disease returned at the age of 5.

Austin’s relapse was confined to his bone marrow. He completed eleven additional rounds of chemotherapy (4 rounds x ICE and 7 x Topotecan & Cyclophosphamide) and had achieved no detectable disease a second time. He continued on to do five rounds of Fenretenide allowing him to enjoy five months away from the hospital before tests confirmed his disease was back in his bone marrow. He continued on with two rounds of Topotecan / Cyclophosphamide and four rounds of Irinotecan, which was enough to keep the bone marrow stable, but unfortunately not enough overall. He developed a tumor in the sphenoid sinus and the orbital area. After one round of Topo/Cyclo and disease progression, he started oral VP16 while waiting for MIBG Therapy in Philadelphia, which he received on June 10th, 2003 obtaining a mixed response. Good response in the orbital and sinus areas, but progression in the bone marrow. He received the first round of a two week on, two week off chemo regiment consisting of vincristine and irinotecan with no response. On September 8th, 2003, he was admitted to hospital with disease progression in the bone marrow. One last Topo/Cyclo to try to alleviate pain without response. He spent the next eleven weeks battling pain, fever, blood count suppression and an overload of neuroblastoma. On November 27th, at the age of eight, God called Austin home. No more hospitals, no more pain and no more neuroblastoma –

Journal

IN OUR HEARTS FOREVER

Could we ever forget your sparkling eyes
or the way you brightened each day,
or your smile which is etched in our memories,
so you're never far away?
Could we ever forget those priceless moments?
The answer, of course, is never.
For you were part of our lives for a short time,
but you'll be part of our hearts forever.



You tiptoed right into our hearts
We knew we loved you right from the start
Your smile, your voice, so sweet and dear,
You filled our world with endless cheer.

You own our hearts, dear little one,
You filled our world with endless fun,
Togetherness, each hug, each kiss -
it is all of these that we miss.

We loved the times we tucked you in,
the mornings would our day begin.
You'll always be, dear little boy,
The whole wide world to us and more.

We're thankful for each hour we spent
and all the happiness you lent.
It matters not that we're apart,
You'll always live within our hearts.












I remember the day Austin gave me this picture, and I remember laughing so hard. He was so proud.

He spent days working on this picture. It was a surprise, and I couldn't look until he was all done. Each time he had to do his "business", he brought it with him into the bathroom. He would bring in a TV tray, set it up in front of the toilet, run into his room, grab this paper from his "junk" drawer, with his markers, and close the bathroom door. Every time I asked him what he was doing, he would say "It's a surprise!"

Well, the day he was finally done, he was so happy to be giving me his "surprise". I even remember where we were standing. When I looked at it, I had to laugh so hard, because on the top it says:

TLLOYLIT PIER


He called it his "toilet paper" because he made it on the toilet (LOL). He was just far too cute.

I miss him so much (tears).















Austin's all time favorite - PIKACHU !!!












THE WATER BUG STORY

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud of the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.

"Look!" said one of the water bugs to another, "One of our colony is climbing up the lily stalk. Where do you think she's going?" Up, up, up it slowly went ... Even as they watched the water bug disappeared from sight. Its friends waited and waited but it didn't return ...

"That's funny!" said one water bug to another ... "Wasn't she happy here?" asked a second ... "Where do you suppose she went? wondered a third ... No one had an answer. They were greatly puzzled.

Finally one of the water bugs gathered its friends together. "I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why." "We promise" they said solemnly.

One spring day not long after the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up he went. Before he knew what was happening, he had broken through the surface of the water and fallen into the broad and free lily pad above.

When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come over his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings ... The warmth of the sun soon dried the moisture from his new body. He moved his wings again and suddenly found himself above the water.

He had become a dragonfly. Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly landed happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.

Then the dragonfly remembered the promise Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water ... "I can't return! he said in dismay. "At least I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."

And the dragonfly winged off happily into its wonderful new world of sun and air ...

Read Journal History

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Links:

http://www.cncf-childcancer.org   An excellent source of information about Neuroblastoma!
http://www.caringbridge.org/page/ashleygoud   ASHLEY'S journey
http://www.smilequilts.com/austin.html  

E-mail Author: gbd@sympatico.ca

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