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Old 08-10-2007, 06:42 PM   #1
Bill_Lin
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Red face A Real Princess Goes to the Magic Kingdom!

Hello Disboard Officianados !

The time has come to start a thread for my DDs Make a Wish Trip . It has been very inspiring, informative and fun to read Wish Trip Reports here. I hope our thread will do the same for others.

For those who don't want to read the background story.... skip this part.

Index of Pages in this Trip Report:
Medical Background and Introduction
Requisition Poem #65
Send Off Party #110
Day One: Flight and Arrival at Give Kids the World Village #133 and Day Two: Sea World #135
Day Three: MAGIC KINGDOM!!!! #137, Day Four: Morning at the Village #142, Animal Kingdom #143, Day Five: Universal Studios #145, Islands of Adventure #148, Pirates and Princesses Party at Give Kids the World #149
Day Six: Epcot #151, Disney Studios #152, Day Seven: Hang out at the Village and Fly Home #154
Magic Kingdom Poem #33

Let me begin in 1987. My DW Lin , who even my female coworkers acknowledge is a HOTTIE, is also a redheaded Irish-Cherokee . LIfe with her is lots of fun and certainly interesting . Long before we met, she lost a little daughter to Neuroblastoma before she reached 2-years of age. "N-blast" is a cancer that often strikes children before or soon after birth. Before our family came along, it was commonly thought that it was not a genetically connected disease. My wife's maternal line showed otherwise.

My DW lost an uncle, two cousins, a sister and her daughter Becki to this disease. There are many other family stories from "the old days" of family members dying as children from cancer or "abdominal troubles."

My DW also had three healthy children before we met, and I had four nearly grown children of my own (they are all grown and gone now). To make a long story short, we met, fell deeply in love and married. We have one child together, Elysia, the Princess. Her name is from the Greek word for paradise.

We knew something was wrong when a fetal-age ultrasound showed an abnormality. We prayed that it was not N-blast. Immediately after birth, our beautiful DD went in for a CT scan. At 6 weeks she began her surgeries. I will never forget the eye contact she made with me when the surgical team took her away. All I could say was my nickname for her "Sugar Baby," as tears welled up in my eyes.

Surgery lasted hours. One adrenal gland was removed as cancerous and a 'c' shaped tumor was removed from around her spinal cord. Unfortunately, the adrenal tumor had adhered to her renal artery. Several hours later another surgery was performed to remove her kidney. Months of chemo followed.

Somehow, our, now bald, little baby bounced back. Things looked great for months. 6 months later the other adrenal gland showed up as cancerous. It was removed and more chemotherapy followed.


Miraculously, she has been cancer free for over three years now as confirmed by twice-yearly diagnostics (2-days each go and lots of difficult tests). We thank God for this answer to prayer. Dr. Judy Felgenauer of the Spokane Sacred Heart Children's Hospital Pediatric Oncology clinic is to be thanked for her expert guidance and wise consultation with colleagues . Dr. Diane McCarthy, the surgeon achieved the amazing feat of removing EVERY cancer cell during the last surgery .

Bill and Lin

Last edited by Bill_Lin; 10-13-2007 at 03:23 PM.
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Old 08-10-2007, 06:51 PM   #2
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Thumbs up Genetic Study

For those waiting for Wish Trip information only, skip this post

There is an old Jewish saying, "Coincidence is not a Kosher word ." I prefer to see the hand of God in the story that unfolds below .

"It just so happens that" Elysia's oncologist was beginning her practice by studying under Becki's oncologist back in 1989. When she met Elysia in 2002, she remembered Becki . It gets more amazing from here.

The doctor who had been Becki's oncologist was, by the time Elysia was born, a cancer researcher conducting in-depth research into Neuroblastoma. Dr. Judy contacted him to tell him about this second incidence of the disease from children of the same mother. He requested genetic samples from all of Elysia's close relatives . From this sampling, not only was it demonstrated that in her form of N-Blast, there is a genetic connection, but the actual gene was found. Now children can be tested to see if they have this aggressive form of the disease.

Last edited by Bill_Lin; 08-10-2007 at 08:53 PM.
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Old 08-10-2007, 06:57 PM   #3
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Smile "Lysi" Today

Lysi , as we call her at home, is doing very well these days . She has Addison's Disease from having her adrenal glands removed and operates on only one kidney . Thrice daily (I have waited ever since studying Shakespeare in college to use that word) steroid doses take care of the lack of adrenal glands for the most part, although occasional injections and emergency hospitalizations for I.V. therapy result from ordinary illnesses like the flu or from injuries. She also receives injections to prevent her growth from stopping at too young an age .

Otherwise she is a healthy, active, brilliant, sweet, precocious little girl. She has graduated from Head Start and is about to start Kindergarten .
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Old 08-10-2007, 07:06 PM   #4
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Smile Lysi's Big Wish

If you were waiting for Wish Trip information only, start reading here......

Last winter, and believe me Spokane knows how to have a real winter , on our last hospital visit for scans, we found a brochure from Wishing Star, a wish granting organization with an office in Spokane. When we asked about it,they researched the issue and told us that they thought Elysia would qualify . They assisted us in completing an application for the Make a Wish Foundation .

One week later, I called Tammy at Children's Hospital Child Life Services to ask about the qualification standards for a Wish Trip. Tammy was very nice and said that she was sure Elysia would qualify because any child who was in six months or more of treatment for cancer would be entitled to a wish trip . We became cautiously optimistic.

Last edited by Bill_Lin; 08-10-2007 at 08:54 PM.
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Old 08-10-2007, 07:09 PM   #5
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The First Wish!

We asked Lysi what she would wish for if she was awarded a wish trip. She said that she would wish to spend the night in Cinderalla's Castle ..at Walt Disney World's Magic Kingdom.
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Old 08-10-2007, 07:18 PM   #6
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Smile The First Call and Visit

A Wish Trip volunteer, Kathy, from our little home town (a person I had worked with on local committees in the past ) called to set up an appointment for a Make a Wish interview . Elysia danced around all day singing a little song she made up, Make a Wish is Coming to Visit Me . It was so adorable. What a joy to see our little Sugar Baby , who has been through so much suffering, trauma and stress in her life , filled with joy and delight . Her eyes really lit up . Throughout the day she would stand by her special window in our living room to see if Kathy's car was there yet .

Kathy Wellman arrived at 7:15 p.m. Kathy introduced herself to Elysia and asked her lots of questions about school and all of the things that Lsyi enjoys. Finally Kathy asked Elysia to tell her what her One Big Wish in would be if she could have any wish in the world. Elysia said that she would wish to spend the night in Cinderalla's Castle at Walt Disney World's Magic Kingdom. Kathy told us that a lot of kid's have the wish to visit the Magic Kingdom and get to stay at a wonderful place called Give Kids the World Village with all sorts of fun activities, beautiful rooms and free meals . Lysi became very excited about GKTW .

Elysia decided that she would still like to ask for a night at Cinderalla's Castle but would like to make her wish include a week at GKTW at any rate.

Kathy told us that GKTW would provide tickets to the Orlando area theme parks .
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Old 08-12-2007, 09:57 PM   #7
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Bill, Blessings and thanks to your son. Karen
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