Journal Entry

Wednesday, June 25, 2003

All I ever needed to know, I learned in Kindergarten

by Robert Fulghum

Most of what I really need to know about how to live, and what to do, and how to be, I learned in kindergarten. Wisdom was not at the top of the graduate school mountain, but there in the sand box at nursery school.

These are the things I learned. Share everything. Play fair. Don't hit people. Put things back where you found them. Clean up your own mess. Don't take things that aren't yours. Say you are sorry when you hurt somebody. Wash your hands before you eat. Flush. Warm cookies and cold milk are good for you. Live a balanced life. Learn some and think some and draw some and paint and sing and dance and play and work everyday.

Take a nap every afternoon. When you go out in the world, watch for traffic, hold hands, and stick together. Be aware of wonder. Remember the little seed in the plastic cup? The roots go down and the plant goes up and nobody really knows how or why. We are like that.

And then remember that book about Dick and Jane and the first word you learned, the biggest word of all: LOOK! Everything you need to know is there somewhere. The Golden Rule and love and basic sanitation, ecology, and politics and the sane living.

Think of what a better world it would be if we all, the whole world, had cookies and milk about 3 o'clock every afternoon and then lay down with our blankets for a nap. Or we had a basic policy in our nation and other nations to always put things back where we found them and clean up our own messes. And it is still true, no matter how old you are, when you go out in the world, it is best to hold hands and stick together.

Typically, I print and share the above Fulghum piece with the parents of my incoming kindergarten students at the parent meeting I conduct. I think it's something adults can all chuckle about yet more importantly all learn from. When things get stressful around the hospital and the Ronald House, I try to remind myself of this poem and remember that my child isn't the only child suffering from a life-threatening disease. I think Fulgrum's piece puts a lot into proper perspective even during the most trying of times.

Last week at home was fabulous!! On Monday we went to Soak City (Thanks to my friend Diane and to Cedar Point!). We had never been there before. It was incredible!!!! Fun for all ages! Christi rode every water slide. She's a daredevil!! Shayla also enjoyed their wave pool and Choo Choo lagoon. We then stayed (again) at Shayne's Mom's house. (She lives at Lake Erie year round now and we all love it there.) Shayne told her not to make us so comfortable and we won't keep coming back. She laughed saying she loves it when we're there. She's a gem - thanks, Joan!! We love and appreciate you so much and will one day, in some way, pay you back.

Shayne was glad that he was able to stop in and say hello to his friends at the bank. A lot has happened since he went to New York and I think it was really hard on him not getting to be a part of it now. He misses his job so much. For me, this was the summer I was planning to start taking Ph.D. level courses with the possibility of starting my doctorate in gifted education - not only helping me teach this unique and typically under taught group of children in every classroom, but also helping me to learn more about Christi. (And now I'm positively convinced her little sister Shayla too. I think her mind is just like Christi's; she's amazing! Currently, Shayla's obsessed about where food comes from (chicken, hamburger, eggs, yogurt, etc.). Quite frankly, I think she's on her way to becoming a vegetarian - only one problem...she doesn't like vegetables!! Smile.) Shayne and I know what's important in life (It's not our careers.) and where our priorities are without a doubt; yet it's still very hard for us to be treading water instead of living normal lives with careers and co-workers we absolutely love and miss terribly. I don't want to lose Christi; I just want this to end.

Tuesday we received the most fabulous news....................The Make a Wish Foundation approved Christi's wish trip to - JAPAN!!!!!!!! We are scheduled to fly out of New York City on July 10th for an eight day stay in Japan! Yipeee! Christi immediately started eating with chop sticks, making origami, and doing calligraphy. We borrowed a few Japanese videos and books from the awesome Tiffin library and Christi brushed up on the few Japanese words she knows. We have hosted five Japanese exchange students through Heidelberg College and Japanese exchange teachers through OSU over the years so Christi knows quite a lot about their culture and is thrilled to soon be making this dream trip; she also hopes to see some of our sweet Japanese friends. (Saiko-2002, Mika-1996 and Miyuki- 2000) have all emailed that they're making plans to see us. Yipeee!! We've been so blessed!!! We still can't believe Katsu and Mika even flew to Ohio to visit Christi during one of her chemo. treatments when we were still in Ohio. Amazing, kind, and wonderful people!!) Christi was going to start taking Japanese language lessons this fall for some educational enrichment on Wednesdays. Due to her diagnosis and then isolation, it never happened. She is so excited about her upcoming trip and we thank the Make a Wish Foundation for making it all possible.

All was glorious, until the realization hit that it was time to pack to go back to New York. It's amazing how much dread is associated with going back. We dread all they're going to do to our beautiful, little girl with needles, IVs, medications, tests, etc. as well as all of the pain that she must endure during her treatments. I dread the bad news we will inevitably hear once again. Dr. Kushner's words still haunt me when he recently told us they've never had any one survive like Christi who hasn't cleared their bone marrow and no one like Christi has cleared their bone marrow without the use of chemotherapy agents. (Not an option with Christi's refractory - chemo resistant disease, this really stinks and is so unfair.) Being at home with Christi being pain free made us most thankful!! "Worship the Lord with Gladness" (Psalm 100:2) And it was a nice way to "bury our heads in the sand" for a bit and to forget about what's really going on.

While we were at home, I received my awesome teachers' association's newsletter in the mail. I'd like to thank Karen, Jerry, Marj, Marlene, Barb and all for really pitching in to do my work this year. (There's only so much that can be done via email.) Anyway, here is the article I submitted:

Summer NWOEA Newsletter: A Message from President Angela
"Make Today Count"


My teachers' union background has taught me to never give up on a child no matter how daunting the course appears. Therefore, since December, I've lived in the Ronald McDonald House of NYC where we transferred my daughter's cancer care when "treatment failure" was declared in Ohio. Each school year I share my insight and wisdom teaching children; now I realize how much they teach me instead.

Children are geniuses at raising the bar for themselves, clearing it and then setting it one notch higher. Working with children raises the bar for me as their teacher and for everyone else whose lives they touch. They inspire us to dig deeper for the strength to do what feels hardest and what's scariest.

I fully believe that it's important for adults to model appropriate behavior for children, but what I've discovered recently is that children can model courage and character for adults - if only we really pay attention to them. People tend to think of children as weak and vulnerable - little fragile people. In my experience, they're giants. They have immense and open hearts. Their minds can expand to encompass any reality. Their bodies and souls are amazingly resilient and their spirits can soar in the face of enormous physical pain and trials. This is not meant to dismiss in any way that children depend on adults for protection, comfort, support and guidance.

This year, I've had a rare and privileged window into what young people are capable of accomplishing. These children (ages six months to eighteen years) have taught me about the sacredness of every human life and about the awesome, almost unstoppable, power of the life force. The lessons I've learned have little to do with disease and death that surround this hospital. Instead, the lessons have been of courage and strength. The courage to endure in the face of pain, the redeeming value of life lived in the present, the power of love and faith to transcend all boundaries; they've taught me these important lessons well.

The fabulous kids I've lived with this year have shown me compassion, hope, tenacity, and most of all courage! I believe that their remarkable journeys will inspire anyone who is struggling to prevail over a crisis that tests their courage. It's common wisdom that living "in the moment" is the best way to master time, but it's hard for adults to "seize the day" the way children seem to do instinctively. They have strength and inspiration that we, as teachers, should draw from. These children adopt a pragmatic attitude toward harvesting as much of life as their limited time allows. I ask my fellow union members, to walk the path that children offer us and to follow them.

Dealing with the raw reality of a child with a life-threatening disease, the stakes couldn't be any higher, the odds any lower, and the answers never enough for the really tough questions my husband and I continue to pose. As I write this column, I'm soothed by the grim monotone of the IV drip going into my daughter's arm as she endures yet another treatment. Regardless of what happens, Christi has lived. She has loved without boundaries and she has taught me so much in her six years on this planet. I have been her student. Her life has been difficult the past seven months, but she has lived. I will now take nothing for granted and I will be happy for each day I have with her. While I long for my old membership card back into the "I have a perfectly, healthy kid" club, I'm now proud to hold a more valuable membership card of the "Make Today Count" club. Enjoy your summer, follow the children and make every day count.

Because of the long drive and the fact that Christi gets very car sick, we decided it best to split the ten hour trip up. Therefore, we drove two hours to Columbus' COSI and spent the most fabulous day with our COSI Spectra Player friends (Traci and Jenn rock!!!) and my wonderful sister and her children (Thank you, Tina, Ashley, Shelby and Will) and my teacher friend from college - Diane G. and her two beautiful little children. We spent six hours at COSI and still didn't get to see and explore everything. Of course, the girls are anxious to go back.

While we were enjoying our time together at COSI, Shayne went down to the State Capital to say hello to our long time family friend and newly elected State Representative Jeff Wagner (and Buttercup's former owner). Even though Jeff is extremely busy with his new job, he somehow makes the time to write and to send notes to Christi every so often. He's a wonderful man and a great role model to so many!! (I still remember Jeff and his wonderful wife Carla stopping by when Christi was about five days old and bringing her a darling little baby outfit.) Thanks, Wagners!!

After the long day in Columbus, we drove to Greensburg, Pennsylvania where we met Shayne's wonderful father and stayed in a hotel. In the morning, we went to Idewild Amusement park and had a great time. (Thank$, Grandpa!) I called my Mom and Sister from the "Story Book Forest" section to reminisce since we had been there together many, many, many years ago. (Don't forget about Gettysburg, Tina!!!! hee hee heeeeeeeee!!!!! I love you, big sis!) The best part of course was spending time with Shayne's Father. Because he lives out of state and Christi was in strict isolation all fall we hadn't seen him - except once through the window before we left for NY six months ago. It was a long ten months apart and we were all very happy to be together again - even if just for 24 hours. Shayne's dad knows the score with Christi so I think he especially enjoyed this precious, special time together. (And Christi talked him into riding the roller coasters with her so we didn't have to! Smile. Poor Grandpa will never be the same! hee hee)

Following the day at Idewild, we again drove east. Soon it was after midnight and we still had hours to go; therefore, I asked Shayne it he thought it would be okay to start calling around to find a cheap hotel. I found a hotel in Allentown, Pennsylvania. Shayne pulled over and we crashed for the night. (I knew Shayne could stay awake to drive us to Ronald, but I didn't want to have him out parking the van or walking around so far away in the wee-hours of the morning. I'm glad we stayed. Everyone felt great the next day and we even stopped to explore The Crayola Factory along the way. Perfect for our little "Crayola Kids" as we often call them.)

Monday's weight check showed she weighs 23.8 kilos (52 1/2 pounds) and is 121 cm.(48") tall. She gets weighed every day. Her blood counts, except for her white count, were the very best they've been in months. (white 2.9, Hgb. 11.2, and platelets 185. She finally hit the normal range in two out of three. Super!!! Gotta get that white count up! Don't have any clue why it was so low.)

On Monday the four incredible Child Life Specialists planned a Harry Potter party. What a thrill to have kids all over the world so excited about books! I downright love it!! And what is doubly cool is that the author befriended an eight year old neuroblastoma fighter treating here at MSKCC!!!!!!! Knowing that Catie was not going to survive, the author would call her from England and secretly read to Catie from the fourth book she was currently writing. After Catie died in 2000, her parents established the Catie Hoche Foundation. One day a check for $100,000 for the Catie Houche Foundation arrived from J.K. Rowling. Christi's not really aware of all of the Harry Potter hype as I think she's too young for this literature yet, but Monday when we walked into the decorated playroom she immediately spied a magic set put out on one of the tables. Together we spent about one hour preparing for this magic show she wanted to put on. Well, every day I think about how blessed we are to have such fabulous volunteers at the hospital involved in our lives, Monday was no different. Christi managed to talk about 12 folks into coming to watch her magic show and those incredible volunteers and a few parents and children did such fine clapping and oohing and ahhing that they made her feel like she was David Copperfield. I could have kissed all of their feet!! She stood up, placed her magic wand on the table and took a big bow before walking off to go climb up in her hospital bed like a very proud performer now ready to embark in battle of the day's cancer treatment. Volunteers - you ROCK!!! Thanks!!

Monday, Tuesday and today have been back to the yucky treatment that must be endured. I'm not sure why it has to be so painful. Why? Why? Why?!! It's terribly hard to watch her wither in pain when all I can do is sit beside her, hold her hand and tell her she's doing great. It's hard when she sometimes cries back to me, "I'm not doing great; I'm doing TERRIBLE!!!!" She's so uncomfortable and I really don't know if the narcotics offer any relief. Perhaps Christi will grow up to be the researcher who finds a treatment that is effective and pain free for future generations of kids. These kids of the future will probably look back upon this and say that Chrisit's treatments are only slightly advanced over the time when they routinely bled people with leeches. Regardless, I'm thankful for no known long term side effects and still hopeful that there will be a long term future for her, despite all odds. Christi is truly my hero!! She could be battling this beast with hatred and anger, but instead she is fighting with a smile. A smile no one can wipe off her face - despite the treatments best efforts. So far, with every treatment, she always bounces right back!!!! She laughs and giggles when most would cry, complain and give up. I'm so blessed to call her my daughter.

On Tuesday, Shayla finally was able to have a play date with her best friend from preschool - Veronica!!! This sweet child is a delight. Shayne and I were so thrilled when she brought a note home in her back pack one day. (No, it wasn't a good note from the teacher which would have made us very pleased in a different situation, but it was a note asking for a play date from this wonderful child that Shayla talks about all the time.) I still remember when Shayne first met Veronica and her father at the Metropolitan Museum of Art's "Start with Art" program. He said that Shayla made friends with the smartest little girl he ever met. Her kind father told Shayne about Veronica's preschool offering enrollment on a month-by-month basis when Shayne told him we were trying to find a preschool when Shayla first joined us in the city. This preschool has been such a blessing - perfect location, fabulous teachers and director, and great friends. Shayla had a great time at the playground and playing back at their apartment Veronica.

Please check out "Shane's" web site in Christi's Clubhouse. This absolutely fabulous teenager ROCKS!! He has been fighting neuroblastoma since 1994. Truly, a very gifted and talented individual!! Our best wishes and sincerest prayers for Shane and his family as they continue to "MARCH" in this battle!!! (Shane is VERY involved in his high school band.)

Thanks for all of your loving support. Thank you for sticking with us during this long, journey. We love and appreciate you all!!!!!!!


Christi's Jokes: Knock, knock (Who's there?) Ham (Ham who?) I don't want to tell you this joke; it's just bologna!!

How do you say you did something correct under the sea? Fishing accomplished!! (Mission Accomplished!)

What's Next? Tomorrow Shayne and Shayla will fly to Chicago to attend the Children's Neuroblastoma Foundation's annual conference until Sunday. (We didn't need the full amounts on our American Airlines ticket vouchers so there was almost enough left to completely cover the cost of these two tickets to Chicago. YES!!!! There is no charge for NB families to attend this conference and the first forty people that responded to the email for complimentary hotel rooms received them. Thank you, CNF!! ) This conference, held at the largest hotel in Chicago, looks unbelievable. I would say the majority of the leading doctors of NB will be speaking. (I hope they're ready for Shayne who has gathered his list of questions!!) Not that Shayla wouldn't take good notes (hee hee) but complimentary child care is also provided. Shayne and Shayla plan to go "Museum Exploring" when they get some breaks in the conference schedule. Two of the speakers are two of the doctors doing the MIBG treatments. The treatments differ a bit and Shayne will try to figure out which one may work best for Christi. Pat, the cofounder of CNCF lost her son, Nick, to this deadly disease and decided to do something to help others from fighting this disease alone and to help find a cure. I tip my hat to Pat for all of her hard work. It must be terribly difficult on her. Angel parents have told me with time it gets a bit easier to go on living without your child, but it always hurts. How fabulous that Pat is able to do something to help other families with the disease that killed her son. What an inspiration she is!!

The rest of this week and all of next week will be more of this 3F8 (beta glucan & monoclonal antibody) treatment. While extremely painful, I'm amazed at how well Christi tolerates it and how she gets up enough courage to go back to the hospital the next day for more "punches" oh, I mean more "treatment". She's had a lot of swelling and hives again this time.

Then, Christi's scans will be July 7th, 8th and 9th. (We fly to Japan on the 10th for her Make a Wish trip.) What I found very interesting is that on the exact same days a dear Internet Cancer Kid (Teen's) Mom told me that her son, Chris, also has his scans those days. So wild!! Michelle is an awesome, single Mom from Canada and she is a great support for me as we share a lot of common beliefs. (She sent Christi the darling pink outfit Christi wore for her 6 year old pictures with Buttercup. The picture is now on Christi's home page. Thanks, Michelle! We are praying hard for squeaky clean scans for your awesome cancer fighter - Chris!!) As Michelle knows all too well the test results will determine everything. Despite how hard it is to wait for these test results to be determined, I remind myself: "Wait on the Lord: be of good courage, and He shall strengthen thine heart..." Psalm 27:14.

Some of you have asked me about Phase I and Phase II experimental trails. These are only offered for kids like Christi. (Children who haven't responded to typical treatment.) While we hope for a cure, we also hope Christi's participation will help with research and findings for future cancer fighting kids so that one day there is a cure for all neuroblastoma kids. Here's some information for you:

Phase I clinical trials (like this 3F8 beta glucan trial she will end on July 3rd) are specifically designed to determine safe dosage levels of a new agent, new use of an old drug, or new combinations of drugs or therapies. Their intent is NOT to cure, but to find out how much of the drug or agent can be safely administered in children without causing harmful side effects. Only children for whom all other standard or initial therapies have failed are eligible for phase I trials. It is always hoped that a child will get a positive result from exposure to the drug, but it is not the primary intent of the study. Statistics say that only 5% of children show any response (not cure, but positive response, even temporary) in Phase I trials. Remember that "response" rarely means "cure."

Once safe drug levels are assessed, new agents or therapies move into Phase II trials, the purpose of which is to sometimes continue to look at dosage safety levels but, more importantly, to demonstrate activity of the drug against the disease. Until such a trial is completed and its statistics prove efficacy (or not), no one can say for sure whether the drug is working. (The MIBG Therapy in Philadelphia, Michigan and San F. is a Phase II trial.)

Some phase I and phase II studies are designed with agents that show promise in stopping disease progression, but not total disease eradication (which would mean "cure"). Insurance companies will often not cover the high costs because they are "experimental" and the results are not proven. Children have been known to start on one therapy, complete trial participation, and then go on to another appropriate trial of another agent. (In Christi's case MIBG therapy or the vaccine (Phase I) perhaps - all experimental trials - nothing proven.) While this has to be done with a careful plan, the choice of one trial does not always eliminate the option to try another therapy later. Conversely, entry into some trials will prevent us from trying other drugs or therapies that may later be shown to be effective, so there is a lot to discuss and to think about when making decisions. We continue to pray for God to give us and our fabulous doctors wisdom and guidance in doing what is best for our beloved little girl, Christine Shayna. Thanks for everything!! Take time to smell the flowers and to really enjoy your week!!!! Bye bye!!