Journal Entry


Sunday, June 15, 2003

Fatherhood
The father must have a full-time acceptance of all the children.
He must never say, "Get these kids out of here; I'm trying to watch TV."
If he ever starts saying this, he is liable to see one of his kids on the 6 o'clock news."

-Bill Cosby in Fatherhood

Happy Fathers' Day to all the awesome Dads in our world!! What would we do without you?! And to my daughters' father I say...............Thank you for being the World's Greatest Dad. God certainly blessed the children by making you their Daddy. I knew when you used to read great literature to the girls while they were still in the womb, you were going to be a wonderful father, but I never imagined that every day you would do something special with them no matter how tired you are. You come home from work and are thrilled to see them; you can't wait to change into comfortable clothing and to start working on a project together. While everything has changed this year, you are still just as excited about being with them, always trying to instill concepts and to make them better individuals. You continually share your many talents and your wisdom. Your children are constant, demanding, strong-willed and full of energy; yet you never give up and never lose your patience - despite the fact you are exhausted. What a wonderful planet this would be if every parent put their children in front of themselves like you do. You always make the girls feel protected and cherished. Any hour of the day or night, you're there to help them. Remember, sleeping on the floor of "Baby Christi's" room using a pack of diapers as a pillow because you said you were worried about her? Or was it you just wanted to be close to her? I love you. You are an extraordinary man whose example inspires us all. You are strong in your example yet gentle in your love. Thank you for being the perfect Father!! I know your heart has been broken this year and you really can't handle any more bad news; I am so so sorry. This is so hard, honey. Shayne, there aren't many (if any!) like you. Thanks for being the most fabulous Daddy for the children. You are so awesome! Happy Father's Day 2003!

The following is an email sent to Shayne back in April from one of his former teachers. I thought it was sweet and wanted to share it on Father's Day.

Shayne: Happy belated birthday! I'm sure as you turned the big 3-5 you may not have remembered some of those things from 8th grade history like you're now old enough to run for president! See? there are advantages to getting older! :-) I remember thinking when I hit that age that no one could ever be qualified to run for president at 35 because there was still so much to learn and experience. Ten years later, I think it's true at 45, too! Should you ever choose to pursue politics as a career, I think one of your issues could be health care as you have definitely gained a perspective that most politicians never have to deal with first-hand. If you ever decide to run for office, you've got my vote! I always saw what you were capable of even "way back" in 8th grade. You had those natural leadership qualities combined with compassion and a sense of humor that were just waiting to get channeled and challenged. I just wish your biggest challenges were along the lines of banking and finance rather than Christi's battle. Continue to have faith that God will give you the strength and courage to deal with each step as He works His plan in ways that may not be understood. It's obvious that Christi received a double set of genes for determination and spirit which are being used as an example for all of us. She is an inspiration to many as are you and Angela.

We arrived at home over the last weekend. During the drive, I couldn't quite shake the fact that I learned two of our neuroblastoma fighters from MSKCC were being sent home with nothing else that can be done for them. Their disease is back and there are no treatment options left. It is so unfair, so heartbreaking and so hard to believe. Six and a half year old Henry was playing "Subtraction Bingo" with Christi in the playroom last week and he looked and seemed great (just out the outside I learned). And it seems just like yesterday that the girls were laughing and playing "Candyland" with Jacob in the playroom at Ronald. This disease is a wicked beast. It is so tricky and conniving.

Once we arrived at home Christi asked many times, "When can we go to Cedar Point?" So, after checking the weather forecast, Shayne told her that we would take her on Monday. With Thomas Team thanks to my teacher friend, Diane and to Cedar Point we were blessed with complimentary tickets to Cedar Point in Sandusky, Ohio. WOW!! Cedar Point (link) has been voted "Best Amusement Park in the World" for five years in a row and is Christi's favorite summer place! The Corkscrew, Wildcat, Blue Streak, Iron Dragon, Woodstock Express, Disaster Transport, Jr. Gemini, Cedar Downs - she LOVED them all!! (Shayla loved their playground.) We had a fabulous day!! When I asked Christi how she was so brave to ride those big rides she told me that the chemo must have made her tough. She has really grown up the past nine months. Many times this year I thought we would never get Christi back home alive so this was an exceptional treat to be enjoying her favorite place with her feeling well and happy!! Praise to our great Father!! She's currently pain free. No matter what happens, I will never, ever forget her incredible smiles and her beautiful laughter I saw and heard while seated beside her on the roller coasters. Diane met us inside the park and also gave us money that she recently collected to help us out when she was at teachers' meetings in Columbus and in Bellevue. It seemed so odd accepting that money from my fellow association friends knowing that on about three occasions over the past 16 years, I've stood in front of the same 400 member audience and collected money for other teachers in need. Now I'm accepting it. Wild! Never say never, I guess! Thank you to my sweet and generous teacher friends across the state! I've missed you so much this year!!!!!!

Speaking of "Never Say Never" from what I gather, that was Christi's awesome Webmaster Eric's topic when he was the commencement speaker for his former High School recently. He addressed the graduates as their speaker and also asked the thousands of folks in the stands to have a moment of silence for Christi. How awesome! I'm sure they were storming heaven for our little sweetheart. Thank you, Marshal High School in Michigan!!! Best wishes Graduates!! I'm so honored to know a commencement speaker and one like Eric - he's so fabulous!! We've been blessed and will never be able to repay him for the countless hours he's invested and all of the work he does nearly every day on Christi's site. Thanks, Eric!! (And thanks to his beautiful wife, Alicia, who I know often is outside doing "Eric's work" for him so that he can work on Christi's website. What a team - thanks, Cooks!! We love you guys!)

And again - Never Say Never - Shayne may not admit it, but I think it was HIS idea to get our family picture taken while we were at home. I've always believed in having pictures "in case something happens" but this year has definitely proved why it should be a MUST with EVERY family!!! So, off we went to the great The Picture People at the Sandusky Mall. The wonderful Bev and Linda were there to work their magic - somehow always making us look great. They captured beautiful photos that I will treasure forever. Thank you, Bev, Linda and The Picture People!! I've snail mailed photos to Eric, so I'm sure they'll be on the site soon. I hope you like them as much as Shayne and I did. Christi had fun posing and I am so thankful The Picture People also allows pets - so you know BUTTERCUP even made the family photos!!! You'll also see the tacky, plastic, beaded jewelry that Shayne and I are wearing, but we refuse to take it off. Christi made it the day she was diagnosed back in September. I told her when she tied it around my neck that I would not take it off until she was cured, or until it broke. Well, the string - like Christi, is really tough so it looks like I'll be making a lovely, fashion statement for a while longer yet. (Smile) Finally, I urge you to get your family photos taken soon. You never know what tomorrow may bring. If you go to The Picture People, a nationwide chain, you will take home your finished portraits in just about one hour and you'll find their prices very reasonable and the quality very high. The place is amazing. Our girls always love it there and even play "The Picture People" at home pretending to pose and to take each other's pictures. Enjoy!!

With Grandma Nee Nee's home being just twenty minutes away from Cedar Point, we went to Port Clinton to spend the night. (And ended up staying for a few days!! Thanks, Joan!!) We all love staying with Nee Nee at the lake. Beautiful Emily - Nee Nee's neighbor, was up there too and we all enjoyed her delightful company as well. Her son helped Christi learn some new tricks with her Gameboy and played the piano for us. Wow! Thanks, Michael! We even ended up returning a few days later to stay at gorgeous Lake Erie again.

Last Saturday night, Christi's ballet group (Dance Unlimited at Heidelberg College) held their annual recital. This was the hardest thing I've had to do yet. When the Director's husband, Bob, asked if Christi would be home and could attend, I asked Christi if she wanted to go to the recital and to go up on stage at the very end. She immediately asked, "Can I give my teacher flowers?" I told her, "Yes." Then she responded that she wanted to go. Knowing how it would be actually facing the fact that she's missed an entire year of normal childhood, knowing how much she LOVED dancing on stage at the Ritz last year, and knowing that Shayla was also signed up and ready to start ballet this year too when disaster struck our family, I was for certain it would be a difficult test for me to have the courage to go. Anyway, I agreed to suck it up, face the music and attend. After her group from last year did their performance, I whispered, "What did you think?" She was still smiling and clapping wildly with great enthusiasm for them as she whispered back, "They did good! They did really good!!" It was absolutely precious!! I don't believe she felt left out at all. Wearing her sister's peach prom dress (Had to get another use out of that awesome donated dress! Thanks, New York!!) she walked across the stage to give the Director flowers (a bouquet of peach roses which matched her dress) we bought for Mary Jo in New York. I thought Christi looked beautiful - absolutely beautiful!! My friend emailed me that Christi received a standing ovation. I don't know about that, tears were flowing from my seat in the front of the Ritz, but I know there was a lot of clapping. So much in fact that after Christi gave Mary Jo her flowers and curtsied to her, she turned to the audience and curtsied to them too. (Totally cracked me up. Only Christi!) Her wonderful teacher, Kathy, then came on stage and presented Christi with her point shoes which were signed by Christi's classmates from last year. It was unbelievable. I know how hard you have to work to earn pointe shoes; I can't believe she gave them to Christi. (I guess Christi has worked very hard this year - just in a different way.) Nevertheless, Kathy's signed ballet shoes are hanging in Christi's bedroom where they are the perfect decoration. (Ballet is the theme of Christi's pink and lavender bedroom.) We were offered tickets to see the American Ballet in New York City that same evening and would have loved going to the ballet, but by far we were at the greatest dance event in America on Saturday night with Dance Unlimited's recital at the Ritz in Tiffin, Ohio!! Thank you, Dance Unlimited!! What an awesome show! Thank you for your support and love as we deal with this crisis!

Thursday's blood work at the hospital went well despite the fact Christine still gets herself all worked up over getting needle sticks. You'd think after nine months of it, it wouldn't bother her, but she still gets so nervous and I can feel her heart beat rapidly while she's sitting on top of my lap waiting to get the blood drawn. I wish they could stick me instead!!!! We also went to St. Francis that day to say hello to so many wonderful people who have been praying so hard for Christi.

Friday found us taking our annual Toledo Zoo trip with "Grandma" Donna and Katie and Donna. We had a great time together with perfect weather and then thanks to Grandma's Friend, Mickey, we were treated to Chuck E Cheese. What fun! I allowed the girls to stay over night and have a slumber party with Grandma and the friends they've grown up with. They had a ball and Grandma didn't look too tired on Saturday morning. Thanks, Grandma!

Saturday we headed to Sandusky, Ohio to stay at the Great Bear Lodge. This awesome hotel contains Ohio's only indoor water park. It is tremendous!! On the day Christi was diagnosed, Shayne had earlier made a hotel reservation for our family to stay there. It was for Wednesday, September 11th (The one year anniversary of 9/11) and this overnight was to be a way to have some great quality family time together for this horrible anniversary. Shayne said they were having a good sale and he surprised us all with making this reservation. We were counting down the days until we could stay at the Great Bear Lodge. The following morning, he was to have a meeting for work at that hotel so I was going to just get up very early and drive the Shayla to preschool and Christi and I to school. Little did we know that the would be the exact day when Christi was diagnosed with cancer and that hotel stay would never happen. After writing a letter to the Great Bear Lodge explaining what had happened, they refunded Shayne's money. THANKS!! And thanks to Shayne's former boss (Mike Kershner / Old Fort Bank) and to the Great Bear Lodge we had an incredible stay there last night!!!!! THANK YOU!!! They even gave the girls beautiful tee-shirts and way too many tokens to play in their wonderful Arcade room. We had a ball!! God's people are so awesome!! We've been richly blessed!! Our friends (Tim and Denise) and their four sweet children got a room stayed too. (Tim has been driving all the way from Bellevue to mow our lawn each week. What a friend!) We had a great time with our dear, sweet friends. The hotel's water park is fabulous! Christi was riding EVERY water slide. She is so brave and courageous! We'll forever treasure the awesome memories made there and I'm so glad her Broviac broke!!!!!! (She can swim!! Yipeee!!) "I like my hair short like this." Christi said when we were swimming together. Now that I think of it that long, blonde stuff was really in the way last year every time she went swimming. (Frankly, she looks like a boy wearing a bikini, but it has been nice not to have to keep combing her hair and on the other hand not to be bald anymore and getting so many stares either. I just wish it meant her treatment was over and it's far from over.)

After I arrived at home, I learned that sweet, precious Akaida - just ten days shy of her fifth birthday earned her wings and became an angel on Monday night. She fought neuroblastoma like a champ since her October 2001 diagnosis (11 chemos, many surgeries, recent MIBG at CHOP). While I'm thrilled that she is now pain free and able to run in God's gardens after being paralyzed for months due to the tumor on her spine, my heart absolutely breaks for her wonderful Christian parents Marie and Rick. Please join us in prayer for them as they deal with the unthinkable. If you'd like to send an email of sympathy, you can visit Akaida's web site in Christi's Clubhouse. They are a fabulous family and we are absolutely sick about their great loss. We know that they will be reunited with their Angel one day in a much better place and we know that Akaida is watching over all of her cancer fighting friends, but it's very hard. God bless Akaida!!!! He certainly picked a wonderful child to enter the gates of heaven so young!!

Also, please visit Christi's Clubhouse and check out another Canadian friend's web site. Eight year old Tori, like her Mom and Grandma, is a sweetheart!! Unfortunately, Tori relapsed in March 2003 and has been treating with us in New York. Please keep this wonderful girl and all of these cancer fighting kids in your prayers. They are all such special kids dealing with the unthinkable with amazing courage and strength. It's really hard to watch these kids, who are like our family members, suffer and it's harder yet when a parent tells us that they are being sent home and we know we'll never see them again. God, we're not asking for much - just healthy, normal, tiny cells please.

This new song (not yet released) really hit home with us and all that we're living with right now. And our girls used to say that they were going to marry Daddy. (And Shayne always said that no man will ever love them more than he does which I know is true.) Just thought I'd share:

STREETS OF HEAVEN
(a new country song - not yet released, by Sherrie Austin)

Hello God, it's me again
2:00am. Room 304. Visiting hours are over
Time for our bedside tug of war

This sleeping child between us
May not make it through the night
I'm fighting back the tears as she fights for her life

Well it must be kind of crowded on the streets of heaven
So tell me what do you need her for
Don't you know one day she'll be your little girl forever
But right now I need her so much more
She's much too young to be on her own
Barely just turned seven
So who will hold her hand when she crosses the streets of heaven

Tell me God, do you remember the wishes that she made
As she blew out the candles on her last birthday cake
She wants to ride a pony when she'd big enough
She wants to marry her daddy when she's all grown up

Chorus:
Lord don't you know she's my angel
You got plenty of your own
And I know you hold a place for her
But she's already got a home
Well I don't know if you're listenin'
But praying is all that's left to do
So I ask you Lord have mercy, you lost a son once too

And it must be kind of crowded on the streets of heaven
So tell me what do you need her for
Don't you know one day she'll be your little girl forever
But right now I need her so much more
Lord I know once you've made up your mind there's no use in beggin'
So if you take her with you today, will you make sure she looks both ways
And would you hold her hand when she crosses the streets of heaven

The streets of heaven

Today I reflect upon how much I miss my fabulous Dad my wonderful Grandpas even though I know they're in a much better place. They've given me the fondest memories of very happy times together which I'll cherish forever! Happy Father's Day 2003!! Have a great week! God's great blessings to you all!! Thank you for everything!!!!!!!!!!

With love, thanks and gratitude,
Angela

Christi's Jokes:
What always goes up and never comes down? (Your age)

How far can you walk into the forest? (Only halfway, then you're walking OUT of the forest!)

What has a mouth, but never talks?
What runs, but never walks?
What has a head, but never weeps?
What has a bed, but never sleeps? (A RIVER!!!!!!!)

In Honor of Father's Day, I'll share the following: (Taken from Christi's baby book, written by Shayne) "Christi, I want you to have all the happiness in the world. We will always be here for you." Shayne wrote of his first impressions: "After the initial concerns passed, I realized how lucky we were to have a flawless baby. Her presence captured my affection. I knew she was going to be her own person because she refused to be swaddled." And after Christi's first year he wrote "It has been a whirlwind of activity since Christi was born - all the hustle and bustle of daily life. I hope we have given appropriate love and nurturing. Christi has developed a definite personality. She is charming, happy, outgoing and very loving. Each day has been a new fascinating development. Although I have recognized each milestone, the one year old bears little resemblance to the helpless newborn. I can only imagine what the rest of our lifetimes are going to bring in terms of joy delivered by Christi."

(Taken from Shayla's baby book, written by Shayne) Upon her birth, he wrote "Shayla, You are a wonder. Thank you for choosing us." Shayne's First Impressions: "What a special little girl. I am so happy to have you in our family." After Shayla's first year, Shayne wrote "This has been a great year. I will most remember Shayla and Daddy falling down the steps together, the fact that Shayla would not drink a bottle (ever!!) and that Shayla attended every single show at the Ritz theatre. Shayla is very affectionate. In fact, she sleeps best in someone's arms - usually in our bed. What a great athlete she is going to be since she has been trying to keep up with her sister lately. Foo-fee is important to Shayla; it bothers Father and sometimes Mother. These first 365 days have gone fast. I look forward to our lives together."

What's Next? We head back to NYC this week. Unless her blood test shows that she is HAMA positive, she will endure her fourth and final round of this Phase One 3F8/beta glucan monoclonal antibody treatment for two weeks ending July 3rd. (If this does happen, she will be the first child on this Phase One study to actually make it to the fourth round - for a variety of different reasons unfortunately the other kids ahead of her and a couple behind her weren't able to make it all four rounds.) Scans and tests will be conducted July 7th, 8th and 9th. The results of those tests will determine what course of treatment will be next. (I think I'm already on pins and needles and feeling the tension.)

Next week we should also learn if the Make a Wish Foundation will grant Christi's wish. When the Northwest Ohio Chapter called Shayne last week, they said even though the Toledo location has never done such an elaborate wish before, they were 90% sure that the national chapter would grant it. (Because it involves an international destination the national chapter has to approve it.) Dr. Kushner told us during her last 3F8 treatment that following her fourth and final round of antibodies would be the ideal time to schedule her Make a Wish trip. After that, MIBG will leave her blood and platelet transfusion dependent again and will put her back into isolation due to low blood counts again. (ugh! That was oh so difficult for all of us.) He then glanced over at Christi - who was busy explaining the mummy she made and telling her teacher which organs the Egyptians put into which sarcophagus. Dr. Kushner chuckled saying "And I can only imagine what her wish is. The simple trip to Disney just isn't going to cut it for this one." He was right! (He didn't even hear Christi earlier when she was being weighed she converted her weight in kilos to pounds and then proceeded to tell the nursing assistant approximately how much she would weigh on Mars and about how much she would weigh on the Moon. At least her wish isn't to go to Mars!!!) It's not to go to Egypt either, but equally as exotic. We've applied for passports and we're hoping to hear that her Make a Wish trip is a go departing out of NYC on July 10th for a twenty hour flight.

We hope that following this 4th and final treatment round she will be at a MRD status (or of course a NED status is our dream! Miracles happen!) and that she can continue on a similar antibody study and get on with the surgery to remove her tumor. Given the amount of disease she still has, that probably will not being the case and therefore she will most likely next have high dose MIBG treatment in Philly, Univ. of Mich. or San Franscico - wherever they can get us in first. Some of you have asked , "What does MIBG stand for?" It stands for metaiodo-benzyl-guanidine and "What is MIBG therapy?" MIBG treatment is not a cure, rather an attempt to reduce the disease to a point where some other therapy might cure her. It is palliative care - to extend life and to relieve pain. It is best on bulky tumors (not bone marrow disease like she has) but it still may be able accomplished that too. It's another experimental study. I know of many children who have attempted it, but only two that it actually worked with. I still feel we must try it even though children who don't respond to traditional treatment (chemo. and radiation) are also the ones who typically don't respond with experimental treatments either. We must not give up, as long as she has the fight left in her, and I fully believe she does. Except for her stable tumor, she really just has extensive bone marrow involvement, so you may be thinking, "Why use a fire hose to put out a birthday candle?" Unfortunately, with neuroblastoma, if you don't extinguish the candle entirely it can set the whole house on fire, so a fire hose seems the only way to go. It is like she is a walking time bomb and we're just waiting for this current stable state of disease to take off and consume her. We're trying our very best to avoid that. And we appreciate all of you prayer warriors working overtime for Christine Shayna!!

This week Shayne spent hours researching the vaccine experimental options - mainly in Texas. While they also do not show much promise, we're starting to believe that it may work best on bone marrow involvement. (Definitely Christi's situation!) We will continue to research this and probably suggest to the awesome NB team at MSKCC that we try this first before subjecting her to the MIBG treatment with its great side effects and a lot of unknowns.

And finally, I had many questions about how did she get this disease? As you will read in the following information, the answer remains unknown. There are no known environmental or genetic causes. Thank you and God bless you all!! Have a great week!

Most neuroblastoma cells have genetic abnormalities. The most important of these is amplification of an oncogene called n-myc. The amplification of n-myc causes uncontrolled cell growth. This occurs in about 25% of neuroblastomas and is more frequent in advanced stage tumors. A variety of other chromosome abnormalities may also be present in neuroblastoma.

Most neuroblastomas are not hereditary, but result from genetic mutations in the nerve cells of the child. Because the tumor occurs very early in childhood, it is doubtful that any environmental exposures the child has incurred could be linked to the development of the tumor, but this has not been completely excluded.

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