Journal Entry


April 4, 2004

I asked for Strength and God gave me difficulties to make me strong.

I asked for Wisdom and God gave me problems to solve.

I asked for Prosperity and God gave me a brain and brawn to work.

I asked for Courage and God gave me danger to overcome.

I asked for Love and God gave me troubled people to help.

I asked for Favors and God gave me opportunities.

I received nothing I wanted.

I received everything I needed.

(author unknown)

Good Palm Sunday evening to ya! In class last Monday night in Columbus, Dr. D. talked briefly about change taking place - one person at a time. Her comments about this caused me a lot reflection over the week as I thought back to the blood drive - an overwhelming event which was in large part the result of Christi's work and life. Amazing! How profound!

I fully realize that the "Blood Drive" was yesterday's news at the bottom of the bird cage now that it's a week later; however, I still continue to reflect back and to marvel upon that incredibly beautiful day. After pondering all of the wonderful things that have ironically happened "after cancer", I believe that it was at the blood drive where I saw Christi the absolute happiest ever! In making this determination, I did take into consideration all of the tremendous "once in a lifetime" opportunities that have been so lovingly bestowed upon her: Sitting in the co-pilot's seat during a flight back from New York and actually steering the small aircraft after we landed, trying on some Rockette's costumes backstage at Radio City Music Hall after the show, taking her Grandma to the Top of the Empire State Building, seeing and having the best of seats at any Broadway and other NYC shows she wanted to attend, having breakfast in Cinderella's castle for her incredible sixth birthday celebration at Disney World with her cousins and aunts, having a dream come true with her Make-a-Wish trip to Japan, swimming with the dolphins in Hawaii, designing and creating two cards which were literally mailed around the world for NCCF and BNG, receiving a first class tour of the US mint, attending the Macy's Thanksgiving Day parade, singing the National Anthem at a hockey game, going "live" on the radio station, being filmed and shown on the New York City TV news for a story about living in the Ronald McDonald House, and being invited to the White House for the Easter Egg roll, etc., etc. Yet I still believe that if Christi were asked what has been the "best" thing about getting cancer (if there can ever be a "best" thing - which there can't) it would be getting to work as a Volunteer at the Red Cross Blood Drive. Therefore, after discussing this, Shayne and I did agree to the Red Cross's request that Christi again host a second blood drive. The date will be Saturday, August 7th. They'd like Christi to be on hand and she is THRILLED about doing that! We pray that her health and treatment schedule will permit that to happen. If not they suggested that it still be held in her honor (and hopefully not in her memory).

What Shayne and I would probably say has been the "best" thing since her devastating diagnosis has been getting to meet countless individuals who have opened their hearts to us. Never did I realize the goodness of people, until Christi's diagnosis. From the Volunteers and Employees at Children's Hospital in Columbus, the incredibly awesome MSKCC staff and volunteers and Ronald McDonald House folks and other tremendous individuals in NYC and in Philadelphia, the great folks of our home communities and to strangers all around the globe who have reached out to us - we've been blessed abundantly! I agree with what Shayne said on the radio talk show interview last week, we need to think of the good things that have happened, not the bad. For people's kindness, we can't ever pay it back, but we can "pay it forward" and we remain committed to doing just that!

Of course what has been the most difficult part, next to the fact that our own daughter has such a horrendous prognosis, is losing little friend after little friend after little friend to this evil beast called neuroblastoma. It feels like a little bit of my heart is ripped away with each death as I mourn for the horrible loss of young life and potential and pray for strength and comfort for their families left behind without their precious children in their arms. "Let those also who suffer......entrust their souls to a faithful Creator...."(Peter 4:19)

On our current medical front, Christi continues to feel FABULOUS despite what the yucky CRA drugs are doing to the outside her body. (Thankfully, her last dosage is Monday morning.) Her cough is much less yet she continues to blow her nose and appear to be a big congested. Due to the drugs: her skin is red, swollen a bit, chapped and flaking off, her lips are bloody in a few places, she has some scabs on her face and hands, her hands have a rash, she's had nose bleeds and let's just say the only comfort I can find is hoping that these drugs are killing the cancer in her bone marrow. She looks pretty rough and I know is experiencing some soreness, but hasn't complained much at all. And, Christi being Christi, was perfecting her cartwheel turning skills in the living room at many points throughout the week much to my surprise. This afternoon she went on a very long hike with Daddy and Shayla and didn't even appear to be winded much less in any discomfort. We thank and praise God that she's feeling tremendously well! The blessing is really remarkable.

Tuesday was "National Doctor's Day" and I had many thank you cards to send out to Christi's doctors. Since her cancer is so rare and because she is no longer on standard protocol, it's wonderful to know that so many doctors are working so hard on her behalf. It still is "wild" to me that when the doctors email they often copy her other oncologists now in: Columbus, NYC, Philly and Toledo. Of course when dealing with something so rare, that's the only way a real cure is ever going to be found. We praise the work of COG (Children's Oncology Group) and thank the NCCF for providing funding for pediatric cancer research being conducted at hospitals all over the country.

If you remember, last October- before leaving for Philadelphia, Christi was supposed to make her Sacrament of Reconciliation for Church. However, she got herself so worked up over confessing her sins (being mean to her sister and not always listening to her parents) that she fell asleep before church and simply wouldn't wake up during or after Mass. Therefore, since it is the church's belief that she needs to receive this Sacrament before making her Sacrament of Holy Communion, Christi and I again practiced and then we all loaded up on Thursday night and off we went to church where (thankfully) she was actually looking forward to making her first confession. After Mass I snapped a picture of her with Father Joe for the large poster of her Sacraments she is in the process of making for her First Holy Communion brunch. The girls and I went out to the van to wait for Shayne while he made his confession after church. (Shayne joked that we should just come back and pick him up in the morning because we'd find him still in church saying "Hail Mary's". If you're Catholic, you should be laughing. I was laughing hysterically over that one as I drove us to church.) Anyway, while the girls chatted happily in their seats waiting for Daddy, I decided to straighten up the van so I removed some papers that were stashed under the visor in front of me and what did I find but a paper written in Christi's handwriting of the Act of Contrition prayer from last fall when she was going to make her first confession, but couldn't. (God works in mysterious ways!!) She's going to glue this on her poster because she thought it was really funny that I found it on the very same night she actually made her Sacrament of Reconciliation. (I thought it was really profound!) She wrote:

Father,

I am sorry for all my sins. For what I have done wrong and for what I have failed to do. I will sincerely try to do better.

When we returned home from church on Thursday night we had a message on the answering machine from the PRESIDENT of the NCCF (the National Childhood Cancer Foundation, the pediatric cancer research group that has invited Christi to the Egg Roll). He said to call him in the morning and left his number. Shayne said to me, "I don't know how large the NCCF is, but it must be something important if the President himself called. Friday morning wasn't my day to teach kindergarten; however, I was in my room working when my cell phone rang and it was the NCCF. The President was in a meeting with COG (Children's Oncology Group) but a sweet woman named Kelly said she wanted to tell us that CHRISTI'S ART WORK WAS SELECTED AS THE ONE TO BE PRINTED ON THE FRONT OF THE ACTIVITY BOOK COVER FOR EVERY PERSON WHO WILL ATTEND THE EGG ROLL AT THE WHITE HOUSE. I immediately started crying. Kelly went on to tell me that they were printing 16,000 (yes, sixteen THOUSAND) activity books with Christi's art work of the Easter basket filled with eggs she submitted for the contest on the cover. I couldn't believe it! She told me that they would also be printing the NCCF logo with Christi's spring art on rolls of stickers for the event and that they thought she was quite an accomplished artist. I had to agree that she is very gifted in art. I was so excited; I went to tell her since I knew it was just her and another little boy receiving instruction in the "hallway classroom". Christi didn't realize what a big deal it was, but her gifted teacher said, "I have chills!" Her final creation is under her Winter 2004 pictures near the bottom. Below is a picture of her that I snapped while she was creating the art for this contest:

Christi is busy working on a large poster celebrating the Sacraments she'd made this far in her life: Baptism, Anointing of the Sick, Reconciliation, Eucharist. This poster will be displayed at her First Communion celebration in the basement of the church after Mass on the 18th. Mrs. Wagner nearly has the dress completed. Christi tried it on again today and it's simply stunning! Absolutely gorgeous! We are all very excited about this special, blessed day. Yesterday, I picked up her very special engraved necklace (Thank you, Jeffrey Jewelers!!!!!) Today her Grandma Nonee gave Christi a rosary from the Shrine in Carey. It's lovely. Hopefully, her skin and face will be healed soon as I have her appointment for her First Communion pictures to be taken at The Picture People in the Sandusky Mall on the 17th of April - the day before the big celebration.

Due to the number of RSVPs we've received, we know that church will be packed and we hope that some of the "Christi Connection" will be willing to sit in the cry room or up in the balcony. For those of you who will be attending, let me say how happy we are you can join us and let me remind you that no gifts will be permitted. Today Christi and I wrapped a box in white paper in case anyone would like to join us in making a donation to St. Aloysius in celebration of Christi's Sacrament of the Eucharist. And I must share that her CCD teacher asked if we knew a certain individual because they had received some lovely books in honor of Christi's first communion for the CCD program. I explained that I do not know this individually personally; however, via email this wonderful woman asked me for the address of the church after telling me what she wanted to do. God's people are good!!!!

Yesterday found us at the YMCA participating in an Easter egg hunt and party. What fun! Christi ran into a sweet little girl from her class so she and Brittny had a ball together enjoying the festivities. I continue to count our many, many blessings that the girls are feeling so well and happy. Shayla attended a birthday party for a preschool friend at McDonald's. We also had our traditional afternoon of coloring Easter eggs at the kitchen table. Shayne's Mom watched the girls on Saturday night as Shayne and I went separate ways to each attend events, but we managed to hook back up at the Pioneer Mill after our dinners.

Today the girls were surprised to find their Easter baskets waiting for them and Easter eggs scattered all over. Because our little girls at age 6 ½ and 5 still believe in the Easter Bunny, we wanted to share this together at home instead of trying to pack stuff up for a hotel room in DC where we will be on Easter morning. (And if I can't pack my shoes, I can't pack Easter baskets! Hee hee. More about that later.) The girls didn't mind not having to wait an extra week at all! "He was wounded for our transgressions, He was crushed for our iniquities; the chastening for our well being fell upon him, and by his stripes we are healed." (Isaiah 53:5)

This week's "moving moment" came when I received an email very early this morning - an email from an almost twelve year old young girl fighting this same wicked beast. In part of her message she wrote:

christi i have looked up to u every day of every year. i always check up on ur website u are my idol for fighting this hard. your younger than me and yet ur so much stronger and have a big full life ahead of you. i wish only the best for you and ur family. u are always in my prayers and always will be. i have neuroblastoma and i no what u are going through. im turning 12 in may and so glad to have found ur website im going to make one myself.

Our hearts go out to this young lady and we shall pray for her and ask you to do this same.

Another "Angel on Earth" this week worked with me on creating a fantastic, multimedia presentation for my OSU diversity class tomorrow night and I will forever be grateful for her help and hard work. My presentation is basically going to be a stretch, but how can the events which have happened in my life over the past 19 months, not forever change and shape who I am? Living in Ronald McDonald Houses and being surrounded with handicapped children due to fighting life-threatening diseases is having a minority status and a diverse experience in my mind. I don't think there are many who have been asked to clear the halls because someone requested a "private transfer" which of course means a brave little cancer fighter didn't make it and they need to remove his/her body from the area and I doubt that many people have heard their little girl say, "I have cancer; my dad's just bald." While just one minute of my presentation will be about our pre-cancer life with the wonderful international travels to: Central America, Europe, Mexico, the Mediterranean, Canada, the Caribbean, etc., etc. as well as hosting our five Japanese exchange friends, the rest will be solely about the journey that Christi is leading us on through her fight with cancer. All that I previously thought made up who I am and how I look at things has forever been changed beginning with Christi's diagnosis. You can't live what I live and have seen what I have witnessed and ever be the same person. My deepest thanks and gratitude go out to Dawn McDonald of Captured Images Photography in Tiffin who spent countless hours helping me for my class. While putting the multimedia presentation together I also had in the back of my mind that this will either be great for a "Celebration of Life" memorial service, or for her graduation party one day. So, I'm hoping to share it with you at her graduation party someday in the future!!! You're all invited!! Thanks, to a friend of a friend and Christi supporter since 9/2002 - Dawn McDonald!!!

It has been another wonderful week with a pain free, happy child which provides for another week FILLED with tremendous blessings. Thank you for checking in on us. It is my hope (pending laptop approval) to soon update you from Philly or DC. It is possible that we will have at least some of the test results by Friday afternoon; however, I know better than to get my hopes up and most likely we won't have results or a new "plan of attack" until Tuesday.

Hugs,

Thomas Team Mom, Angela

"A Funny from Shayla": As I was buckling her in after picking her up from preschool she sniffed the air and said, "It smells like Erie Lake here." Chuckling I responded, "Yes, honey, it does smell like Lake Erie here with the rain falling."

"Another Funny from Shayla": On Tuesday, I stopped by preschool to take some birthday treats to her wonderful teacher. While I was there I was observing the children at play. Shayla saw a little boy do something he wasn't supposed to be doing and she ran over to the teacher whatever it was that was inappropriate in her estimation. I told her not to tattle tale to the teacher and she said, "I was telling the truth. He did do that." I said, "Yes, he may have done that, but you don't need to tell the teacher about it. That's tattling." She asked, "Tattling is telling the truth? Oh, I didn't know that." So later at home I explained that tattling is when you tell on someone just to get that person in trouble. She thought it meant lying. (Kids are so precious!)

What's Next? Tuesday after school, Shayne and Shayla will drive us to Toledo Metcalf Airport, where Christi and I will depart with an Angel Fight Volunteer Pilot who is donating his plane, his time and his talents to take us all the way to Philadelphia International Airport. (Now with Angel Flight, one is not permitted more than 25 pounds of luggage so my dilemma is, "Do I take the laptop, or my shoes?" I've weighed the computer. It's 13 pounds. Ugh! Decisions. Decisions. I know you great Christi Crew friends will expect an update, but the computer's not light! Unfortunately, neither are my shoes. Smile.) Once in Philly, I'll thank the sweet pilot and then hail a cab to get us to the Ronald McDonald House up by the awesome Ivy League's Penn University. Then we'll rely on the PRMcDH's shuttle to get us to CHOP each day. I think the fear of the upcoming appointments has taken over already and my nerves are shot. As typical, I'm not sleeping well. In my opinion, scan/test time is truly the most difficult time, next to waiting for the results - which is really horrific and stressful. (Thankfully, the NCCF will take our minds away from that with the festivities in DC.) She has a CT scan on Wednesday in addition to blood work and routine checks. Thursday will be the bone marrow tests and MIBG isotope injection. (God willing it's available and shipped to CHOP. Many hospitals, including MSKCC, have been having the MIBG not show up due to the extreme shortage. Oh, that would be HORRIBLE!) Her MIBG scan will be on Friday. Shayne and Shayla will arrive on Friday. (Hopefully, with my shoes since I'm leaning toward taking the lap top instead. He should also have all of our clothes I packed separately for going on to DC after we're done in Philly.) Saturday we shall drive down to Washington DC (about 3 hours south) to enjoy the city (especially the Cherry Blossoms since we've never been to DC in April) and take in some sights of our nation's Capital. The girls have never been to Washington. Monday morning is the traditional Easter Egg roll on the White House lawn. We thank the National Childhood Cancer Foundation for inviting Christi (one of their Young Artists) to participate. The NCCF - a tremendous organization, once again rated a top charity, is committed to finding a cure for all pediatric cancers!! Because of their work, they give us hope that a cure may be found for Christi and all of these brave fighters.

Prayer Request: Against all odds, we pray that all of Christi's tests and scans indicate that the horrible, pediatric cancer has forever left her body and that the weather permit the Egg Roll to be held and our Angel Flight to be able to safely take off and land. We pray for the pilot's safe return back to Toledo as well as safe driving for Shayne and Shayla on Friday. We lift up all of our cancer fighting friends as they continue to bravely fight insurmountable odds. Lord, hear our prayers.

Here's some information about the Egg Roll on the White House Lawn

The White House Easter Egg Roll has been an annual tradition since it began in 1878 when President Rutherford B. Hayes officially opened the White House grounds to local children for egg rolling on Easter Monday. To honor the childhood cancer experience, the White House invites young children with cancer and their families to join in the activities this year.

The story of the White House Easter Egg Roll, which begins at one end of Pennsylvania Avenue and continues at the other, is one of the oldest and most unique traditions in presidential history.

Rolling eggs on the Monday after Easter was a tradition observed by many Washington families, including those of the President. Some historians believe Dolley Madison first suggested the idea of a public egg roll, while others tell stories of informal egg-rolling parties at the White House dating back to President Lincoln's day.

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