Saturday, September 6, 2003
"Letter From Heaven"
To my dearest family,
I'm writing this from heaven.
Please do not be unhappy
That day I had to leave you
It's good to have you back again,
God gave me a list of things,
And when you lie in bed at night
When you think of my life on earth,
But do not be afraid to cry:
I wish that I could tell you
But one thing is for certain,
There are rocky roads ahead of you
It was always my philosophy
If you can help somebody
And now I am contented...
God says: "If you meet somebody
When you're walking down the street
"And when it's time for you to go...
Thanks to our neighbor friend, Laura, for watching Shayla last week while Christi and I were at school and while Shayne was driving home and unloading from Ronald. We still have a large "situation" to organize and put away, yet now having everything under one roof is very comforting. It seems overwhelming, but we'll get there soon I'm sure. It's been a tizzy of activity since we arrived at home, but it's all been very positive and we remain most thankful. If I haven't responded to your email, I apologize. There's been a lot to take care of having been away from home for eight months and starting back to work. Shayne finally got the lawn mower running and has tackled the wasp nests - but not before they tackled Shayla first. Poor thing!
Last weekend's visit to Shayne's Mom's home was perfect. If I can borrow a few words from Eric, I'll share it here. www.fromthecutewebmaster.com On a personal note, I'd like to thank Eric and Alicia for driving all the way down from Michigan as well as Grandma Nee Nee for always opening her doors to us. The Cooks are incredibly friendly, personable and down-to-earth; it seems like we've known them for years. It was a FABULOUS time together for which we are most grateful!! They are amazing! We've been so blessed!
Upon returning home on Labor Day, we learned that two of our NB listserv families that we had been emailing with lost their beautiful daughters to this nasty beast. Jessi, a 7 year old only child fighting from California, relapsed months ago. I had been emailing her father regarding the antibodies and the other treatments she was trying which may be possibilities for Christi in the future. Ultimately, she died of liver failure toxicity and our hearts break for sweet Jessi's parents. If you'd like to send a message of condolence, please visit her web site.
Causing me to go numb for a few hours was learning of the death of the most fabulous mother's child from Arizona. It was a long time until I could even email a message of sympathy to Laura. You may have met charming Madison in Christi's Clubhouse as I first became email friends with Madison's Mom (Laura) when Madison was enduring MIBG high dose treatment in Philadelphia in February. She was the most amazing mother to the sweet little girl who entered God's kingdom just two days shy of her real fourth birthday. (Laura had enough insight to let Madi celebrate it one month early because the little girl wanted to and Mom said, "Of course!! Why not?!" so she had a big four year old birthday party in addition to her real one in the kingdom of God. What better place to celebrate?!) Without a doubt, Madison left knowing how loved and cherished she was and Laura did absolutely everything possible to extend her sweet baby's life until God needed her more. The poem at the top of this entry is for Laura whose life on earth will be forever shattered. Jesus said Let the children come to me and do not hinder them, for the kingdom of Heaven belongs to such as these. And He took the children in his arms, put his hands on them and blessed them. (Mark 10:14,16) At Madison's celebration of life service yesterday in Arizona they were releasing balloons at noon. Many of our NB listserv (about 300 families) wanted to join in so I bought a beautiful helium balloon Thursday that said, "WELCOME HOME!" I thought this was the perfect balloon to release in Madi's honor as I'm sure God welcomed her into her eternal home with open arms. After calculating the time change, I took the balloon outside while my class was out at recess and released Madi's balloon along with prayers for her family. Laura, I am so so sorry. You are the perfect example and inspiration of how to live with this beast. During your 2 1/2 year battle you continued to inspire all around you with your faith, love and humor. Please keep in touch! We love you!
Christi and I had another fabulous week of school. My class is wonderful and it feels tremendous to be back to doing what I love to do. I've always felt that teaching has been the highest of privileges and all that I've lived in the past year has only reconfirmed this belief. It's also reassuring knowing Christi is just down the hall in case she needs me; however, she's still feeling pretty well and just pops in my classroom at recess breaks to "help me" and to happily tell me about her wonderful day while I'm tending to clerical tasks. I love it all!! She says she still wants to be a doctor, but now maybe a teacher. Sitting on the top of my desk this year is a beautiful "Angels of Healing" statue that a sweet neuroblastoma girl gave Christi for her surgery before she earned her own Angel wings this summer. I have it there to remind me of this little sweetheart and her beautiful Mother that we grew so fond of. I know Emma's in a far better place; however, having her angel on my desk makes me think of her and wish she were with me having fun singing and dancing and learning in school where I really believe she belongs.
Tuesday was Christi's first day of home chemo. Although it took many hours, it was refreshing to have Christi sitting on the couch during the infusion, joking, laughing and playing "Moneytown" on the laptop computer. I think the nurse was probably questioning if she were really sick or not because of Christi's great disposition and temperament. She's a trooper and truly our inspiration every day! You just can't beat the sound of her incredible laughter!! I simply must capture it on video. By Wednesday "Doctor Dad" (Shayne) had been taught how to flush and disconnect the IV pole which drips into Christi's chest. Funny how we used to insist that every nurse be chemo certified back in Columbus where they were often in short supply and now Shayne, with no degree except one earned through love and devotion, is now Christi's chemo nurse! Go, Shayne!! Without a doubt he's the best and the best looking nurse she's ever had too!! (Smile) Thursday's chemo was accidentally driven to Dayton (two hours away) but then returned here late. On Friday, the weather was gorgeous and Shayne carried her IV pole outside so Christi could receive her infusion out on the driveway while she colored with sidewalk chalk. Fifteen minutes after disconnecting her, she was back at ballet class for the first time. Oh, I like this low-dose chemo and pray that it's keeping her disease stable or diminishing it.
The side effects started hours after the chemo started, but that was to be expected. Christi woke up Wednesday telling me that she had to throw up. (Of course a side-effect from the chemo.) I told her she didn't need to go to school if she didn't feel well, but she definitely wanted to go regardless. I told her that she could call Daddy to come and get her if she was not feeling up to remaining in class, but I knew that would never happen. Elephants couldn't drag her away she's so happy to be in school. The diarrhea and tiredness hasn't fully set in yet, but that should be here any day now too. Her sweet teacher addressed the class with how to handle getting sick at school, since school is really new to Christi and there's so much she doesn't know. As not to single Christi out the great teacher addressed tornado drills, fire drills and what to do if you have to throw up all the same time! Go, Kristin!! I'm glad she did as Friday morning Christi threw up in my classroom before school and then again midmorning her teacher came to tell me she was at it again. So thankful that her wonderful teacher came to tell me - not that Christi needs me, but a mother just wants to be there with her kid during that time even when one has done it so much (This is chemo round #9.) they're now a pro! (Smile) Again she didn't want to have Shayne come take her home. Even though she couldn't eat lunch she said she wanted to stay with her class so she did until Shayne picked her up near the end of the day to go home and to get started receiving her chemo.
Wednesday was Shayla's first day back to Betty Jane Preschool and she seemed very happy when I picked her up. I had been concerned because I believe that is where she first felt abandoned - despite the fact she was in the best of care as that is where she first learned that HER life had now forever changed too. But so far so good. The staff is very compassionate, educated, experienced and loving. I know she's in the best of hands. The school is sparkling clean - one of the first reasons I fell in love with it. It's an amazing, spacious place. After preschool Shayla wanted to come home and play "kindergarten" so I was thrilled to sit down on the floor with her and play. Friday's day at preschool also went well and again Shayla seemed disgusted that I came to pick her up. "Mom!! I'm playing!!" (Like I couldn't see that. Smile.) She still talks quite frequently of Veronica - her wonderful friend from New York. We miss them!
On Thursday we had doctor and dentist appointments. Our wonderful dentist (Dr. Felton) couldn't have been any sweeter. He came in and gave me a hug and asked how Christi was doing and what was up with her treatment and telling us he was going to her fundraiser at church. So so kind and thoughtful! It's always the hardest the very first time I see someone and then I'm okay after that. They were so nice! Then we went to the doctor to get Shayla's preschool physical taken care of. Finally, a fabulous trip to the park (where they have new playground equipment - wow!) finished off the morning for Shayla and I. Christi was at school and Shayne was meeting with someone at home.
This week I received an email which literally brought me to my knees in prayer. Since Christi's diagnosis I've often looked around places crowded with children (amusement parks, playgrounds, museums, etc.) and thought, "I wonder how many of these little ones are seriously ill and their parents and doctors don't yet have a clue." Well, what a shocker to receive an email which I'll share a bit of here.
I attended the dance recital in May to watch my niece perform. I saw your beautiful daughter that Saturday evening and was so impressed by her strength and courage. Little did I know that my own daughter, whom I was holding in my lap that evening, was suffering from the same disease. I just thought that I would share with you a little about our daughter and our common experience. I think of Christi that night of the recital; her grace was enveloping the audience that evening! She has inspired me to keep that vision I have of my own daughter dancing on stage.
I immediately prayed for this little girl's full and complete healing as she will fight from another Ohio city and I emailed right back thinking we do have a lot of information to share with this family who is now living a shattered life where nothing will ever be the same again - no matter what the outcome.
The home chemo schedule had to be moved up; therefore, Shayne is picking Christi up a bit early from school each day and they are coming home and getting started. Shayne has to be home to receive the chemo and other meds that are delivered each day. (Well, each day they don't go to Dayton - hee hee!) The ballet class she was scheduled for on Tuesday afternoon didn't work as a result of the new chemo schedule, but thankfully the wonderful folks at Dance Unlimited rescheduled Christi into a Friday evening class - actually, working out much better as this is the group of little cuties that she was originally with and knows the best and it's also the same wonderful teacher.
Yesterday, Shayla started her first ballet class (Also having Kathy - Thank You!) and enjoyed it and then Christi was in the next class and THRILLED to be there. She was feeling well enough to keep up with everything. You can't even imagine how good it was to sit outside next to my dear friend that I haven't talked with for nearly a year. Ahhhh!! Thank you, Kris!! Next Friday should be Christi's lowest point (after 9 days of chemo) so we'll see how well she tolerates ballet if she's even up for it. Again I thank Dance Unlimited and Bob, Mary Jo, Kathy and Cynthia for all of their help and support throughout this ordeal.
This week our NWOEA teachers' association newsletter was also mailed to our members. It feels great to be back as I'll attend my first UniServ meeting next week and am currently preparing the agenda for our first exec. comm. meeting coming up soon. Anyway, I'll list my article at the end of today's journal entry. I wrote about poverty.
We've never (yet) asked anyone for help with the additional costs that we are incurring due to Christi's cancer; however, we have not had to because people have been so generous. Plans are finalized and flyers are being distributed for a Christian Concert with Michael O'Brien. (He sang at the Ritz in May of 1998.) Health Ministries of North Central Ohio is going to sponsor the concert. The proceeds will be split between the Christi Can! Fund and the just announced Mercy Oncology Center (including a Meditation Room) to be built at Mercy Hospital of Tiffin. This is scheduled for Wednesday evening, September 17th at St. Mary's Catholic Church in Tiffin. Michael O'Brien will dedicate one of his songs to Christi. The song is entitled "Thank God for You". The wonderful man who has been working so hard at this fundraiser and praying for Christi for so long - Mike has told me that this song is "very appropriate because of the way Christi has touched so very many lives by her incredible faith, courage, and sense of humor." Unless something happens, we will be in attendance. While terribly humbling, it is most appreciated. Recently we learned that what we thought may possibly be a second payer to our insurance, will not cover anything experimental (all of Christi's treatments) nor anything out of state (again - the only treatment Christi qualifies for). And I simply must call the insurance company to find out how close we are to maxing out the one million dollar policy on Christi; however, I really don't want to face it! I called in late February and clear back then it had already been nearly $300,000 and that didn't include 16 claims that had yet to be processed. Christi has endured a lot of treatment (chemo, hospitalizations, antibodies, countless tests and exams and what probably was a very expensive surgery and intensive care stay which we don't yet have a bill for) since February. I try to remember like Shayne always says, "It's truly the last thing we think about. Christi's care is first and that will all take care of itself later."
Thank you all for your continued love and support as we continue marching on in Christi's uphill battle. As I tried to explain to my beautician many months ago, in some strange, sick way I actually feel blessed by this disease. I have now learned a very important lesson about life...the fruit of the spirit; love, peace, patience, kindness, goodness, faithfulness, gentleness and self-control as well as the ability to live each day to the fullest. God's people are tremendous and we've been so richly blessed by all of their love. It's been great to be at home, even if she is still going through cancer treatment. Nothing beats sleeping in your own bed - or just sleeping in a bed, right Shayne?. And not only do I miss eating fresh sushi and stopping by the fresh fruit stands on the streets of New York City, but I really miss all of the fine people who were so entwined in our lives helping us get through each and every day. God bless them all.
Finally, to my friend Gina (Harrison's Mommy) please know how hard we are praying for you during this latest crisis!! "Dear friend, I am praying that all is well with you..." (John 1:2) While Gina remained with Harrison treating in New York, her husband was driving to Missouri to sell their boat. Due to heavy rain, he was involved in a horrible collision. Praise the Lord Mike's alive!!! The hospital wasn't able to do the surgery he need and he was airlifted back to the Carolina's for it a few days later. Gina was flew to MANY states this week while her parents remained with Harrison for his testing week in NY. "How much more can this family take?" is something I've think a lot about as I pray for them all. Harrison's website is in Christi's Clubhouse. Gina, I'm so sorry! I wish I could help!! Best wishes and many, many prayers are heading your way from the Thomas Team and from Christi's tremendous prayer warriors I am certain!!
Here's wishing you a fabulous weekend!! Happy Grandparents Day to all of the Grandpas and Grandmas we couldn't live without. Christi decorate Grandmas' cards that said, "Grandmas are like angels without wings" to send to each of her Grandmas. I thought the saying was most accurate! They are angels without wings! God bless you, Grandmas!!
Christi's Jokes: What did the light bulb say to the lamp? I'm brighter than you!
What did the alien say to the cat? Take me to your litter.
What's Next: Day number five of chemo this afternoon. Sunday off to church. Monday back to school and round #9 of chemo all of next week.
From Christi's School Papers (August 28, 2003)
What do you like best about school? art
What two things that make you happy? my cat and my school
What word tells about you? math
What is your favorite food? strawberries
When I grow up, I want to be a doctor.
The best thing about me is "I am an ox." (Chinese Zodiac sign)
Things I like to wear (flip flops)
Thing I like to do (math)
Places I like to visit (My grandmothers')
Good Schools Are Essential! by NWOEA President Angela
As we enter a new school year, I'm thinking about life, for millions of children in America - as we've become the most prosperous nation in the world. The basic statistics are grim: nearly 20 percent of young children in this country are living in poverty - defined as a yearly income of $13,000 for a family of three. One child in ten lives in a household where the yearly income is under $7,000 a year. And two-thirds of these poor children belong to families where at least one parent is already employed. The knee-jerk advice (get a job) is not working for them.
One way we can erase poverty is to ensure that poor children get the kind of education most of their parents didn't have-by raising standards, improving teaching, and making all schools safe and orderly. Our union has been in the forefront of efforts to achieve this, but many children need much more than good schools.
No matter how hard their parents struggle, the effects of poverty often leave poor children two to four years behind before they ever enter kindergarten. Many never see a doctor when they are sick because their families don't have health insurance or money to pay the doctor bills. Their physical development may be slowed because they don't get enough of the right kinds of foods. And many don't get adequate intellectual stimulation, either from their parents or from the poor-quality daycare that's the best their families can afford. Some children who face these disadvantages in their early years suffer permanent damage; others develop more slowly. Many do catch up as they go through school, but others just give up. They are the class behavior problems-the ones who also keep others from learning. For them, education is a broken promise.
Ending childhood poverty ought to be a pledge made by every elected official, every political candidate, every corporate CEO, and every citizen who believes in the American Dream. No excuses. It can be done. A good education is fundamental. In public schooling, we're making progress and great strides, but in too many places, setting standards is considered enough. It's not. It's like putting up higher hurdles on a track and expecting runners to clear them without any extra coaching or training. It won't happen unless we also help students who are behind by providing smaller classes, more time, ongoing tutorial assistance when they need it and expert teachers.
I want my children and hopefully one day my grandchildren to live to see positive changes I can't even imagine in this great country. One of them must be a society that does whatever is needed to make every child safe and healthy and well educated. Let's promise our children we'll make the future a caring one for them. Best wishes for a fabulous 2003-04 school year!!! Enjoy!!!
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Shayne & Angela Thomas: firstname.lastname@example.org