Monday, January 19, 2004
It’s me. It’s me, oh Lord, standing in the need of prayer.
On Thursday, we received four separate pieces of bad news starting with the blood counts, then the official tests/scan reports from CHOP that came in the mail, then a phone call with Dr. Suzi regarding the stem cells, and finally a phone conversation with Dr. Kushner in NYC that didn't go the way we had hoped or thought at all. So to hear our precious little gift from God sing this song as we drove to school Friday morning I cried, realizing nothing could be truer - she's standing in the need of tremendous prayer.
Christi received this new CD of Bible songs from a beautiful teacher friend April (former Florida State Teacher of the Year and National Teacher of the Year in MY book!) currently teaching on the west coast. I attended her fabulous, inspiring and motivating presentation for primary teachers in Cleveland months before Christi was diagnosed. After that workshop, I'd often reflect in my classroom, "What would April do?" when lessons didn't go exactly the way I had planned and "How can I get her to my school so all of my colleagues could participate in her workshops too?" Well, thanks to the Internet, people can keep in touch, communicate and problem solve. Thanks, April DeCeasure! You rock!
Thursday morning, school was delayed due to the poor weather conditions. (Wednesday night I came home from Columbus and even though I was going slowly at one point my van slid to the right and then to the left without me having any control whatsoever. I thanked the Lord for keeping me out of the ditch and that I didn't have the girls with me! I was so lucky!) So Thursday morning was the perfect time to go to the hospital for Christi's blood draw without having to miss any school -yippee!
While at the hospital, Christi also picked out a present at the gift shop for one of my colleagues who had a beautiful baby girl so we dropped that off for her. "My toy was as big as the baby, Mom!" Christi exclaimed when we left Lori's room. (Congratulations to the Saubers!!! May your sweet new baby be forever blessed with happiness and good health!)
Christi's blood counts were disappointing to say the very least. She just doesn't seem to be recovering on her own nor with the reinfusion of her stem cells from the MIBG treatment back in November. Hgb: down to 8.5, white 1.9, platelets 27 with an ANC of 1200. We were THRILLED that her platelets appear to be slowly rising, but disappointed that her hemoglobin is continuing to slowly fall. It was also a surprise, but not a shock, that her white count which had been 11.4 dropped clear down to 1.9 - that's three days without the "G" shots for you I guess! All very low, but above transfusions levels. Christi has been soooooooooo cold as a result of her low hemoglobin! When I took her to school on Thursday she was dressed in two layers, but still cold. Thanks to the wonderful Mrs. Michener and Mrs. Niedermier, I was able to take a nice warm sweatshirt down to Christi to put on over her other two layers to help her her warm.
Later in the day, I opened up the official reports that I had asked to be sent to us from CHOP reagarding all of her tests/scans done the week of December 29th. (One thing I've learned with this war is that some times what you hear a doctor say and what is in black and white vary and that was indeed the case here.) I thought - and I wrote down in quotations that Dr. Maris told us that her tumor cells in her marrow were decreased as a result of the MIBG treatment and that her MIBG scan was negative. Well, the official report says that the tumor burden has remained unchanged and that the MIBG scan is "essentially" normal just like before the treatment. So sadly, I learned that we put her through this horribly harsh DOUBLE MIBG treatment for nothing and unfortunately did a terrible amount of damage to her as a result - which of course all affects future treatment.
Thursday, Shayne spoke with Dr. Suzi at CHOP who informed him that the stem cells that were reinfused back in her on January 2nd only showed that there were .8 instead of 1.7 after they were tested so that is possibly why her counts are still not recovering and they'd like Christi to go back to CHOP to get another (precious) bag of stem cells. (They don't grow on trees!!!!!! And, they can't be given back in Columbus, or anywhere in Ohio for that matter; it has to be done at a NANT hospital. Ugh! And once they're gone, they're gone! We don't want to be eliminated from other possible treatments because we don't have the stem cells in reserve to qualify. Many NB children fall into this and then die of this disease because they can't treat.) We appreciate Dr. Maris and Dr. Suzi as they are really looking hard at finding the best possible next treatment for Christi. We have been so blessed by having wonderful oncologists on our side throughout this battle. They're working on a plan - we just don't know what it is yet. Meanwhile, she's had no treatment since November and we know that cancer cells don't just sit still - they rapidly divide.
Late Thursday, Dr. Kushner called from NYC. Via email correspondence, Shayne and I had asked him for Christi to start on the G-MSCF/3F8 (antibody) study, but without doing any chemo first. (It was our first choice for treatment because the antibodies were potentially effective in reducing her disease last spring and even though there is horrendous pain, there are no known long term toxic effects.) While Dr. Kushner said, "sounds good" in an email and Shayne and I had decided that just he and Christi would head for New York since the treatment isn't that hard and because I made a commitment to my school and my students I would stay back with Shayla until they returned in a few weeks. However, on the telephone with Dr. Kushner it was "only if she goes through two rounds of high dose chemo first (to eliminate the possibility of getting a HAMA early) and redo all of the disease evaluation tests that were done at CHOP - about a weeks worth. When asked about her prognosis, we received an answer that no parent should ever have to hear, yet we know the nature of the beast and fully understand that he is probably correct. That being the case, we do not want to subject her to the hell of two high dose rounds of chemo, instead choosing for a better qualify of life for however long or short it may be only God knows. Even though she's now been "heavily treated" we believe she still has a lot of fight left in her and we will continue treating at this point. A miracle may be just around the corner.
Needless to say, we didn't sleep much Thursday night. Shayne and I were like ships passing in the night. Coming downstairs I'd find him, we'd talk, go to bed, then he'd come down and find me downstairs, we'd talk, go to bed, etc. Crazy! It's just so hard to try to put something on the shelf and go to bed when you're mind simply won't shut down - even though your body is exhausted!
It was no wonder I woke up on Friday with a cold and bad sore throat, but I knew I had to go to school. All throughout this past 17 months, I've never once had to use a single sick day that my most wonderfully, kind and compassionate co-workers have donated to help me, nothing could be more appreciated! I didn't want Friday to be the first time I used someone's sick day and to be for ME - those days are for Christi, IF I ever need to use them and I hope and pray I don't ever need to use one! I feel so bad that they were collected to help me, yet nothing could be more valuable and helpful when needed. Because I had so many sick days accumulated on my own due to 14 years of teaching, because I work part time and because someone decided that I need to borrow ten of my future sick days first, I haven't needed to use any of the donated days, yet. I continue to be in awe with my incredible district and all of its fabulous staff members. I have been so blessed to have worked for the world's greatest school district for the past fifteen years, after being a student there for 13 years myself. Go, Tigers!!
So on Friday morning I listened to Christi sing about needing prayers and tried to put everything out of my mind as I turned into my "teacher/actress" mode for the day for my kindergartners. And with my great class and great parent volunteers, I was able to put it aside pretty well for the day making mini-apple pies for a language experience, teaching math through the use of dominos and introducing a new song to practice sequencing. School has been a fabulous distraction for me and I'm most thankful for being back to doing what I love! I was so wiped out after school another teacher stopped by my room and I was sitting down at a students' size table doing nothing just waiting for Christi to put down her latest art project she was concocting so we could go home. She said, "You don't look so good." I said, "This is exhausting. I'm wiped out. I feel terrible. I just bought a Pepsi 30 minutes ago and I'm still tired. I think I'll have Christi drive home." I tried to joke.
Soon after arriving home, I pulled up my email and learned that sweet, sweet, 8 year old, Tori - one of our great Canadian friends lost her battle with this wicked beast after fighting so hard for three and a half years. It was just the thing to put me over the edge. I get so attached to these wonderful kids. It's hard when they earn their wings even though I'm positive they're saying, "Mom and Dad, you shouldn't have tried so hard to keep me on earth; it's great up here with God! He never burns the grilled cheese sandwiches and He has all the time necessary to tell me stories and to answer my thousands of questions." My heart breaks for Tori's family and being so far away I can't possibly get to Tori's memorial service even though I would love to show my support and concern. Tori's request was to be cremated so she was. (These kids simply know too much.) I will release a balloon in her honor and will continue to pray and to treasure memories of this little sweetheart! Kim, if you by chance read this, I want you to know that I'll never forget your bright and beautiful princess, especially playing bingo that night at Ronald when she had a fever - yet she insisted you were not taking her to the hospital because she despised being inpatient! I just couldn't believe a young girl could call her own shots - yet she was! I was totally impressed, even though you were in such anguish. I immediately knew what a smart gal and brave warrior she was. Kim, she knows you did everything possible to keep her with you and one day YOU WILL be forever together again! I am so sorry! I love you, my friend! Thanks for all of your help, advise and support in our dealing with Christi's cancer while you were in the midst of your own battle. Tori's website is in Christi's Clubhouse at http://www.ottawanrf.com/tori.htm
I was numb after that news on top of feeling miserable, but managed to take Shayla to ballet, found an empty room by myself, cried my eyes out, and then tried to plan some lessons for my students for next week. Shayne remained at home with Christi as Christi wanted to make something for Shayla for her birthday. Well, as usual, Christi had grandiose ideas! Shayne knew what she wanted to make out of paper (puppets of some sort) was simply not going to work so he tried to modify her request. Christi insisted on HER project. When he refused, she took pencil to paper and told him exactly what she thought as she wrote and then folded her paper into planes and airmailed them to Daddy. I found them and thought they were a hoot!!!
One note said:
It won't work! It will fall over.
P.S. Your jokes are not funny so don't tell them!
Another note said:
I love you Daddy! I was just joking. You're the best. You are so handsome. It is true.
Shayne arrived with Christi, who had calmed down, for her ballet class just as Shayla's class ended. He knew I was feeling miserable with my cold and with so much bad news about Christi and devastating news about Tori so he told me to go home. So I did and I curled up with a book on the couch attempting to read. After Christi's ballet class, he took them to a little cafe on campus for pizza to give me more quiet time. The next day I pulled up my email and saw that he copied me in on a message he wrote to our friends which was so funny. Shayne wrote:
Shayla always seems to get compared to Christi when it comes to intellectual prowess. This is a pretty high standard and better parents would resist the temptation; however, Shayla is about the age when Christi really took off reading....therefore we have been monitoring Shayla for pre-reading skills. Tonight, after ballet, I took the girls over to the coffee shop at Heidelberg. Shayla decided she needed to use the rest room. I took her in the men's and waited outside her stall. She was jabbering as usual (even on the toilet) and inquiringly asked, "Why is there writing on the wall in here?" "I don't know. Just finish up so we can get back to Christi." "Well, what does E M K C U S spell?" "Dunno." "Daddy, what does S S A spell?" I dunno. "What does K C I D spell?" "I Dunno. Shayla hurry up." "Dad, come in here and look at these words." "Shayla you are reading them backwards!" "Oh, what do they mean Dad?" "Never mind." "Why never mind? What? Why? Who? ..............." "Shaylaaaaa!!"
Saturday the girls attended a wonderful little 5th birthday party for their preschool and ballet friend, Brenna, at the bowling alley. It was a very nice time! Then Christi and I went to spend the night at my Mom's so that Christi and Grandma Nonee could sew the special bean bag project Christi has been wanting to do for Shayla's fifth birthday coming up in a month and when you're feeling miserable there's no place better than Moms. We had a very enjoyable time together. Shayne brought Shayla over on Sunday night so that we could have another girls night together. The girls LOVE riding bikes in their basement. Who knew you could enjoy a bike in the winter in Ohio?! What fun!
Today's blood counts were again very low and very disappointing - except for her platelets which are starting to show promise, a big whopping 49 day! Yahoo! I'll take it! Unfortunately, the other counts had all dropped from Thursday. (Hgb. 8.1, white 1.7 with an ANC of 900). I'm really not liking where I think we're going here. Our prayer request remains that the counts rise while we give thanks and praise for the start on her probably rising platelets. With a 8.1, I'm not sure if she'll need a blood transfusion today, or if they'll want to wait until Thursday. At least she won't miss any school if it's today. She hates to miss school or to be tardy. Also, with her counts now that low we don't know if she'll be able to attend school; we're waiting on an email back from her doctors.
During our last week at CHOP, Shayne's Dad gave us quite a scare, but thankfully we think things are much better now. It was extremely difficult for Shayne knowing his Dad was very ill and needed to be in the hospital while he was stuck in Philly with three women - one with cancer, one with too much energy/zip/pizzazz and one with the flu, but there wasn't a lot he could do in forcing his Dad to get help being many states away. We'd like to thank all of Lowell's friends for pitching in and taking him to the hospital and taking such good care of him now that he is back home. We've been blessed!
Today in the great USA we celebrate the work of and honor Martin Luther King Jr. in a day of observation. When I attended a teachers conference in Atlanta many years ago, I took a taxi to his center and found it to be fascinating and so meaningful after reading some of his writing as an under grad student in a literature class at BGSU. Last week in my social studies lessons, many of my kindergarten students learned about MLK for the very first time. I could literally see their wheels turning as they gained valuable new knowledge and information and started to process it. To the wonderful Nobel Peace Prize winner who has these words engraved on his tomb, "Free at last. Free at last. Thank God almighty, I'm free at last." I say thank you for your peaceful movements in an effort to help bring fairness and equity to everyone regardless of race, religion, culture, or individual differences.
Well, Christi fans, thanks for checking in! God's great blessings to you all! Have a SUPER week!
With love, thanks and gratitude to you all from the Thomas team, Angela
Christi's Joke: Why should you wear boots when its raining cats and dogs? (Because you might step in a poodle.) Yes, she made that up and told it to her second grade class (Sorry, Kristin!)
What's Next? I'm afraid to write what I think may happen because things change so fast! But, I "think" we may be back at CHOP soon participating in a clinical study regarding a new chemo drug called ABT 751. About 25 kids in the US have tried it and Dr. Maris has treated 6-7 (all are still around = good news!). It supposedly works to stop the dividing (cancer) cells with refractory neuroblastoma. I've only read one study on this, it's that new, and I don't know much. It's an oral chemo drug. (She's good with taking pills so that will help if we venture down this road.) Another possibility would be that she starts taking cis-retnoic acid (which could be done here at home). Both treatments are VERY mild on the blood counts are are very well tolerated. Hopefully, either choice will keep her disease stable - or of course kick it's T T U B (Let's see if Shayla can read that one. hee hee!)
Prayer Request: That Christi's blood counts rise without requiring another bag of her stem cells and that we make the right decision to get Christi into remission. We pray for comfort and strength for all of our cancer fighting friends and angels, especially Tori's family. Lord, hear our prayer.
NORTH COAST BUSINESS JOURNAL ARTICLE: Shayne recently wrote an article which was published in the North Coast Business Journal so I'll paste it in here. Shayla also took a photo of him with a Ben Franklin statue that was with the article.
As another year passed many of us were compelled to make New Years resolutions covering a variety of things from exercise to relationships. Financial goals are often among the good intentions bantered around at the end of one year and the beginning of next. I was thinking about this topic as I sauntered across the campus of Penn in Philadelphia. My daughter is treating at Children's Hospital of Philadelphia (CHOP), which is located in the University City district of Philly. The campus lies between the Ronald McDonald House and CHOP. Almost daily I have had the opportunity to walk this university campus that was founded in part by the efforts of Benjamin Franklin. As I walked passed one of the many statues of the venerable Mr. Franklin I wondered what Poor Richard (Ben Franklin's nom de plum for his Almanac) would have to say about people's financial goals in a modern world. Now appropriately inspired I sought out the writings of Old Ben to see how they may apply to us today. Mr. Franklin lived into ripe old age and was a prolific writer. There is no shortage of material from which to choose. There are, however, a few seminal works that are representative of his style and contribute to the lasting impression he made on this young country. He borrowed heavily from earlier writers in England so it is difficult to determine what is his original work and what is that of others. What he always brought to the writing was a way to express his thoughts in the vernacular of the colonies and a satirical approach that both entertained and enriched the reader. No work better represents Poor Richard at his best than the Sermon of Father Abraham published in 1758. Drawing heavily on this work I have decided to see what Mr. Franklin could do to help us cast our financial goals for the New Year.
As I was walking across the campus of UPenn I noticed a crowd gathered around a statue of Old Ben Franklin. Apparently it is a tradition at the University of Pennsylvania for the Statue to come alive at the end of each year and dispense advice to seniors and graduates of various backgrounds. Mr. Franklin was accomplished in many different arenas thus he breaks up his discussions by subject. It goes something like this: Monday-Political Science, Tuesday-Physics and so on...as luck would have it I came across the talking Franklin Statue on Friday this was his day to take questions on finance. As I approached there was a throng of Wharton School of Business students quizzing Mr. Franklin. This is what I observed.
A smartly dressed MBA student asked: "Mr. Franklin what year end tax planning should I do?" Franklin responds: "As Poor Richard says "the taxes are indeed very heavy, and if those laid on by the government were the only one we had to pay, we might more easily discharge them; but we have many others, and much more grievous to some of us. We are taxed twice as much by our idleness, three times by pride, and four times as much by our folly; and from these taxes the commissioners can not ease or deliver us."
A bright and beaming coed with UPENN blazon across her sweatshirt asked. "Honorable Mr. Franklin when is a good time to start saving for retirement?" The statue replied, "For age and want save while you may; No morning sun lasts a whole day. A person may, if they knows not how to save as they get, keep their nose all their life to the grindstone, and die not worth a groat at last. A fat kitchen makes a lean will as poor Richard says." "Further more" Mr. Franklin continued, "If you would be wealthy, think of saving as well as of getting".
A smug fellow in the back snickered as he asked the now deceased for 200 years Ben Franklin what he thought of using online banking. I was taken back by Mr. Franklin's insight on the topic. He somehow knew the time saving benefits from paying bills online. He replied "If time be of all things most precious, wasting time must be, as Poor Richard says, the greatest prodigality; since as he elsewhere tells us, Lost time is never found again; and what we call time enough always proves little enough."
Now the granite depiction of Franklin was fully awaken and like a fond uncle began to dole advice to this cocksure young man. "Women and wine, game and deceit, make the wealth small and the want great" Mr. Franklin smiled understandingly as if he knew from experience then continued" What maintains one vice would bring up two children and beware of little expenses; a small leak will sink a great ship".
Being a lender by trade I ventured a question of my own. "What do you think about the high debt being carried by the average American?" Coolly Mr. Franklin replied "If you bear your debt in mind, the term, which at first seemed so long, will, as it lessens, appear very short. Time will have added wings to his heels as well as his shoulders. Those have a short LENT, who owe money to be paid by EASTER" Still dumbfounded by what I was seeing I asked if this was a meaningful answer in 2004. Smoothly he replied "It shall always be true that gain may be temporary and uncertain, but ever, while you live, expense is constant and certain; and it is easier to build two chimneys, than to keep one in fuel, so, rather to go to bed supper less, than rise in debt."
With this he began to resume his original form. He closed with these remarks "Friends my doctrine is reason and wisdom; but, after all, do not depend too much upon your own industry, frugality, and prudence, though excellent things: for they may all be blasted, without the blessing of Heaven; and, therefore, ask that blessing humbly, and be not uncharitable to those that seem to want it, but comfort and help them."
I marveled at the timelessness of his advice and vowed to heed his words in the New Year.
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Shayne & Angela Thomas: email@example.com