Journal Entry

Saturday, May 23, 2003

"I've had the time of my life and I owe it all to you."

I don't recall who wrote that song, but the way you wonderful "Christi's Spirit Club" supporters share other things with me, I'm quite confident that one of you will let me know!! Thank you! And thank you for allowing us to have the time of our lives in beautiful Orlando where fond, fond memories were made with our daughters. We will cherish that special and unbelievable trip forever!!! Dear friends, thank you for the love and the goodness showered upon us allowing us to enjoy our dream trip in a way that we never could have done on our own. We were so blessed and able to do so many things that we could not have without your help. The Thomas Team's votes are all in and after the recount (We were in Florida ya know - hee hee) it was determined that it was the best possible dream trip anyone would have ever been on. Thank you! Thank you!! Thank you!!!

The awesome, Shawn - from Macaroni's restaurant in Orlando, not only provided our family with an awesome complimentary dinner, but this most kind, compassionate and wonderful man called and faxed Sea World and the next thing we knew, we had complimentary Sea World tickets waiting for us there too. We would like to thank Sea World for their generosity. (link) The girls really enjoyed their day watching the cute shows and playing on the largest play area I've ever seen. Thank you Sea World and thank you Shawn - definitely an angel on earth!

While on our trip, I often thought of our NB fighting family members back in New York wondering how they were doing and wishing they would have come to Orlando with us too. I continue to be surprised at how quickly we've bonded with these other NB fighting families from across the country and around the globe. Shayne and I have fallen in love with their kids getting worked up about them like we do our own children. We share in their joys and cry with them in their sorrows. Many times, in Orlando, I told Shayne, "I just wish Karen was here so I could listen to her talk." (She's Robyn's Mom from England and has the nicest accent I've ever heard!! It's delightful!!) So it was very ironic on Monday, when we were at Sea World, and suddenly I heard someone yell, "ANGELA!!!" and was being hugged and kissed by another NB Mom from New York!! Sue, a teacher from New Jersey, was there with her NB fighting daughter - Mikayla and her husband and baby. What a shock and what a sweet, sweet surprise!! Mikayla looked fabulous - hair growing back so full and fluffy! We pray she stays NED forever.

Wednesday, we were on a 6:50 AM flight out of Orlando. We arrived back at Ronald about 10:30 and quickly changed the girls into their fancy, donated "prom" dresses and off we went to the event of the year at 11:00 AM - MSKCC's Spring Prom 2003. And what an event it was!!!! Designers donated the most gorgeous dresses, professional make up artists donated their time and talents, live music, balloons, photos and great little grilled cheese sandwiches and juice boxes filled our girls' tummies!! (Prom food like no other!) It was great to see kids with IV poles and in wheel chairs dancing around and enjoy themselves and their parents. Christi was able to dance with her awesome, awesome teacher - Anne Marie. Oh, how we love that marvelous woman! (She's so great Shayne and I sometimes refer to her as "The Flying Nun". She's remarkable!! We've been so blessed!!)

While nearly every little girl had eye shadow, lipstick and blush applied to their faces, Christi sat down for her turn and asked, "Can you make me a cat?" So, for her prom make up Christi had a yellow lion / cat face paint applied and Shayla had a butterfly to match her gown. (Leave it to our girls! It cracked me up!)

The great feelings of recently being on the greatest vacation ever and not yet having Christi subjected to any treatment were almost immediately dashed as once at the prom, I soon found out some crushing news about three of our NB friends. Michael, diagnosed just before Christi, sharing many of Christi's same disease traits and also on this new phase one study has had his disease progress. He is in a lot of pain despite the pain medications. He seemed fine when we left for Orlando, but that is the nature of this disease. Things often change overnight. This poor little guy's father perished while fighting a fire (He was a fireman.) a year before Michael was diagnosed. Mom is from Ireland and doesn't have much help here. Michael also has a sister a bit older than Michael who's having a tough time understanding why Mom needs to be with Michael and not with her because of his cancer. This is so sad. He's scheduled to go to CHOP in a few weeks. We pray that the MiBG treatment there works for this doll!

And Christi's little friend, Rebecca, was dancing away at the prom, yet her parents told us that the MiBG treatment at CHOP did nothing. Her disease is still progressing. They told us that they were leaving at 7:00AM to go back home to Louisiana. There is nothing else they can do. Her father, a doctor, told us that they have a pediatric hospice program in their area which is wonderful and very uncommon. The sweet family offered their apartment in New York to us. It seems like we were just at the pottery shop celebrating her wonderful birthday. This setback really hit me so very, very hard and I spent the rest of the prom day continuing to wipe tears off of my face. This disease is so horrible! Rebecca was diagnosed last March and is the sweetest little doll and her parents are the most wonderful folks! We wish Rebecca the most love, support and comfort during this horrible period she will now endure. We pray that she is kept as comfortable as possible for as long as possible. (80% of cancer children did in pain.) We also pray for a miracle for her.

And finally, we learned sweet, precious Akaida's parents also recently received horrible news that there is nothing left that the doctors can do for their beautiful little girl. (You can visit her web site in Christi's Clubhouse.) We continue to pray for a miracle for this sweetheart too. She was paralyzed months ago and recently did MiBG therapy at CHOP with the hopes of riding her bone marrow of this dreaded cancer. It failed to do so and our hearts are absolutely breaking for this sweet, sweet family.

Why must these wonderful people have to endure so many trials? My heart is absolutely breaking for these families. Please join us in prayer for these wonderful families dealing with such devastating news. Please join us in praying for a miracle for these sweet, precious and cherished children. As hard as it is to watch your child suffer in pain from treatments, that hope is always there allowing me to get through each day no matter how trying. I cannot fathom when all sense of hope is gone and one's precious child is enduring hospice care until their passing. I still have so many questions that will never be answered here on earth. I do know how much I value today and how thankful I am for it as a result of living this new life.

As a family who is really, really pinching pennies it was something that we never should have done, yet it kept our spirits up leaving Orlando. Having Wednesday's prom to look forward to Shayne and I secretly planned taking the girls to The Plaza Hotel for high tea for "after prom". Across the street from The Plaza is FAO Schwartz where we first took the girls to story time with Barbie. (We thought they fit in perfectly despite the many stares from the nannies there with their kids. One man even said to the woman he was with, "Is that a boy in a dress?" No, that's a cancer kid that's failed in treatment so her hair is growing back I wanted to say, but didn't. I thought his comment was perfect as that's exactly what she looked like - complete with a cat face!) After the Barbie story hour, we walked across 5th Avenue to the Plaza Hotel for the refined and stylish afternoon tradition of high tea. (Believe it or not, Christi was the only person I saw there with an IV hanging out of their arm! hee hee She had just received her MiBG isotope injection which I somehow found this IV humorous being in such an elegant place.) High tea was joyous - sharing little sandwiches and dainty cakes - with proper etiquette a must. (Four year old Shayla didn't understand all of that I admit, but Christi was delightful thoroughly enjoying every single minute and still not wanting to leave the live harp music long after high tea was over. (She managed to get herself so close to the harpist that she was walking over to me to whisper the tittles of the songs.) To cut costs, the girls shared a Child's Tea service and Shayne and I shared a regular service. It was the greatest treat! Many people came over to our table telling the girls how charming they looked and that they were going to bring their granddaughters for high tea very soon. Before Christi's fall diagnosis, Shayne would set up a "tea party" for us a few times per year. He would get out the best dishes and we would create little fancy sandwiches and have high tea together. Christi thought it was so funny, putting on a dress and calling each other Sir and Madame at our kitchen table. Now she can make an accurate comparison of what it's truly like to experience "high tea" at the finest hotel in New York City. Knowing she wouldn't be allowed to eat after midnight because of her next day's sedation, we wanted to fill up her little belly. Upon our return back to Ronald, I read the book "Eloise" to the girls. This book, written by Kay Thompson, is about a naughty six year old girl who lives on the top floor of The Plaza Hotel. Both girls enjoyed seeing the portrait of Eloise and the story behind it Thursday after tea when I explained it to them. This book was waiting here at Ronald for Christi when she first arrived back in December from some awesome New York folks. (Thanks, Anita and Steve! They have a daughter about Christi's age and Anita has sent some other absolutely delightful books about New York that I never even knew existed I thought I was really current with quality children's literature. Again, I realize I have a lot to learn in this area too!!!!!) Thanks, friends!

Thursday was the day for that ridiculously long (but can't be avoided) MiBG scan. This is the scan that lights up where there is NB in her body. I read to her and talked to her and tried to keep her as still as possible, but it's so hard for her to be on a hard table, in a tunnel, with a hot machine so close to your face/body for nearly 90 minutes. Also, they tape her shoes together and strap her arms down by her sides so that she can't move. I try to make light of it calling it a "seat belt" but tears always roll down her face on this dreaded scan. After that we want back for more waiting and finally she was sedated for her bone marrow testing - again four aspirates and two biopsies. We won't know the results for a few more days. While I hope that the test results show improvement, I secretly pray that they're squeaky clean and spotless for the first time.

Many have told me how Christi has touched their lives. Across the country and around the world, Christi has captured the hearts and souls of so many. I'm sure we will never fully grasp this, yet it's amazing to me that a little six year old has done that as a result of this trial. (Social workers, nurses, a Miss America contestant, a congressman, American soldiers in Iraq, not to mention the few students that have contacted me for permission to do their science projects on Christi this year.) All have shared that they've learned lessons about life from Christi's ordeal. I have to ponder if perhaps this is her purpose and her work in life. I've been told that these folks have a new perspective on life and on their work after reading my journal entries. I'm speechless.

Shayne and I have decided not try to send thank yous because of missing someone and I've tried not to point out specifics in my journal entries for fear of hurting anyone's feelings by accidentally overlooking something due to my constant stress and exhaustion. So, so, so many have graciously helped us in countless ways. Some people have sent a dollar; others have conducted fundraisers generating a lot of financial help for these weekly medical bills that my insurance company deems over the usual and customary amount. People have sent kind emails, cards, gifts, brought food and gifts and shared so much of themselves with us over the past nine months since our life was suddenly and drastically changed. So while I've tried not to single anyone out, I simply must share this awesome treat that was waiting for us back at Ronald. I opened a letter from David Bean. The letter was mailed in April as he and nearly 50 of his fellow soldiers (Alpha Company I-30) wrote the sweetest, handwritten notes to Christi while they were fighting the war in Iraq. I don't believe I know who this sweetheart - D. Bean, is but the letters brought tears to my eyes. I cannot fathom how those brave soldiers - so unsure of their own fate took the time to write to us. Some even wrote that Christi was their hero for being so brave and fighting so hard. Unbelievable! Thanks to Christi's awesome military fans risking their lives to keep us safe and free every day. God bless you all!!

Friday was the last day of school in our district. Knowing that was terribly sad and extremely hard on me. This year has been dreadfully long. I always thought Christi and I would somehow get back to school this year and we'd be working and learning again in that most wonderful place on earth by the end of the year. All fall when Christi would ask when she was going to get better and ask if she could be back in school by the end of the year; it seemed so very, very far away and I always told her I thought that would happen. Obviously, it never did. Now I've learned, that even though her classmates have by this point in their school careers attended about 270 total days of school and Christi's school career consists of a mere 14 days, her name is on the second grade school list for next year. This breaks my heart just wishing she would have been able to have a normal childhood and to go to school like the rest of those great kids but I'm glad to see her name on the 2nd grade list and pray that it works out. I still hope and pray every single day that we're both going back to school together again in August. She talks about going back to school all of the time and I'm equally as excited!!

I remain extremely grateful and most thankful that my dear, sweet and thoughtful colleagues donated about 150 sick days to help me out this year. Thankfully, I only needed to use about seven of these offered sick days from my fellow teachers. Because of my awesome, awesome school district and that generous deed, I was able to remain with Christi. We've been blessed beyond belief!! Without that, I would have been forced to return to work at the end of the year since I carry the health insurance. I will forever be grateful and I will forever be grading my colleagues papers, creating their bulletin boards, covering for their recess duties and serving on the committees that no one else wants to (smile, big smile) and forever will I be grateful for my most awesome school district and colleagues allowing me to use their sick days to care for Christi and keep our family together during this ordeal. I know Shayne could remain with Christi while I worked and tended to Shayla here at home, but it would be so very hard on all of us to be apart again. Christi tends to only want me when she's in pain. Poor Shayne sometimes gets asked to leave by Christi when she's not feeling well. She tends to view him as the playmate and me as the nurturer.

Speaking of pain, on Thursday Christi and I met with a psychologist at the hospital to help Christi deal with her pain management in hopefully a better way beginning on Tuesday. MSKCC is trying an experiment so there is no charge for this program; therefore, I quickly agreed to give it a shot. Her doctor and nurse practionors believe because of Christi's precocious mind that this study which has been effective with the older NB patients during 3F8 treatment, may also work on her even though she's pretty young. Shayne and I were thrilled with the idea of using less pain medications and trying alternative means instead. It's hard to let them give her so many narcotics, yet we know she desperately needs them due to the severe nerve pain during the treatment. Anyway, Dr. Pat and I, will help Christi to use her mind to help distract her from the pain that is going on inside of her body during the really horrendous painful part of her treatment. She used the word hypnosis, but because of the negative connotations associated with that word, I'm referring to is at visual imagery. Typically, when Christi's in the worst part of her treatment it last only about 30-40 minutes of the day; however, it's nearly unbearable and she curls up in a ball and tears roll down her face. It's pretty intense to say the least and when I see from the monitors that her heart beat is coming back down and her blood pressure and oxygen are returning to normal levels I actually put my head down on her hospital bed and crash for about 5-10 minutes. I typically can't take naps, but it's so exhausting and draining to watch her suffer and endure that I'm totally spent when I see her start to drift off to sleep and know from the monitors that the ordeal is nearly over. So, hopefully this new approach will help with the pain, and the awesome nurses will still be in the room with me so if she needs the meds they're just one lock and key away. We're hoping with less narcotics she'll have a better quality of life in the afternoons and evenings. Typically, she begs Shayne and Shayla to leave the room and she just wants me to rub her back and to be quiet.

I'm thankful that she's as young as she is and isn't making the decision to endure the treatment or not. There is an adult NB patient at the hospital. (She had NB as a teen and relapsed at age 29. Now 3 years later she is unwilling to try this 3F8 monoclonal antibody treatment because of the horrible pain she just doesn't want to subject herself to it. Instead she is accepting the fact she has a terminal illness and she's coming to the hospital more and more for frequent transfusions. God bless this sweet woman who has been so cursed!! She's been invaluable asset to many NB parents since she's old enough to tell what things are like as a NB patient.

Before we left for Orlando, I was speaking with one of the tremendous nurses here at MSKCC. She told me that while they don't have a cure for NB things are getting better. She said whether you look at it as keeping the disease at bay or buying time, they're now seeing kids live a lot longer with NB. She said they're coming back for check ups having just had their 6th grade graduations - something that didn't happen years ago. We know that the stakes are high and the odds couldn't be lower, but The Thomas Team is still going for the cure! With God's will, she will be one of the few survivors and I think with her incredible mind, interest in science and wanting to be a doctor she could be an awesome children's oncologist one day have great compassion for her patients after surviving this beast.

"Go home and see Buttercup for the weekend!!" That was Christi's response when we shared with her that she was finished with her tests and asked her how she wanted to spend the weekend. (We offered sight seeing in New York, a day at the shore - that's "beach" for our Ohio friends and going home to see Buttercup.) Having been back in New York for less than 24 hours we were exhausted and truly wanted to stay in the city and catch up. We weren't crazy about spending over 20 hours on the road, but it was quite obvious that Christi was THRILLED so we loaded up (again!) and off we went. It took over 3 hours to go 70 miles, but after that congestion we (I mean Shayne - I did NOTHING!) drove straight home arriving in the drive about 2:00 AM. Shayne's Mom had sloppy Joe's waiting in the crock pot for us. It was the world's greatest feeling!! It's been GREAT to be back home. It seems to normal here. We'll head back tomorrow night to hopefully avoid all of the New Yorkers returning to the city after Memorial Day weekend.

And we received a very small glimmer of hope when Dr. Kramer called us at home to give us the "preliminary" report from Christi's MiBG scan done the day previously. This is only a prelim. report and we don't even know if it was read by a radiologist or not, but she indicated that Christi had a decrease in MiBG uptake. We're trying hard not to get our hopes up, but we slept very, very well hoping that this report was indeed accurate and that she was responding to this antibody treatment since she's not responded with chemo and radiation will not rid the bone marrow of disease either. Next week we'll have the official MiBG report as well as the bone marrow aspirations back. We pray that this treatment is working and will allow her to continue treatment of some sort and to continue fighting this beast.

I believe that tomorrow is Seneca East's high school graduation. Congrats and best wishes to all of the graduates - especially to my former students and former cheerleaders. Best wishes to you all and may all of your hopes and dreams come true!! You are great kids!!

Dear friends, thank you for everything! You've richly blessed us. Thank you for helping us during Christi's crisis with cancer. We will never be able to thank or repay you, but we will forever be grateful! Thank you!!

With love and gratitude,

What's Next? Her 3F8/beta glucan treatment will start (3rd round out of a maximum of four rounds) on Tuesday for the next two weeks. Also, test results should be back in soon. I'm no longer silly enough to ask, "Is it clean?". Lately I ask, "Is it worse?" and then I'm thrilled to hear, "stable, or improved a little bit." I'm still praying for a miracle and for clean scans, yet I'm realistic enough to also hope she's just shown some improvement and can continue with treating this wicked beast. I dread the day when they send us home telling us there's nothing else they can do.

Christi's Jokes:
How do you know when an elephant has been in your house? When your watch is broken and there are footprints in your peanut butter.

How do cats say the like it? Give me a paws (applause).