Tuesday, February 10, 2004
I GET UP.
Greetings to Christi's wonderful prayer warriors, cheerleaders, friends and supporters! The fourteen day CRA drug treatment ended yesterday and she did great for this first round! She never once had any noticeable mood swings nor the temper tantrums we were dreading. Actually, at one point when she was being overly nice to her sister, Shayne turned to me and joked, "We should have put her on this about five years ago! She's so polite!" What she did end up having was horrible redness and a rash, but it should improve during this two week break she's getting away from the drugs. I'll now back up a bit:
Here is my February 2nd report to my family and close friends: Happy Groundhog's Day! (Smile) Just wanted to share some FABULOUS news! We may be actually getting somewhere with Christi's blood counts. She attended school today and presented her "Endangered Species" poster to the fourth graders who said that she really had guts - a six year old making a presentation and doing her best to answer their questions. (I'll have pics on the web site soon. I think Eric's back from his skiing trip out west.) Thanks to Caroline and to her dear 4th grade class and thanks to Mrs. Bumb for watching my class for me at the book fair, so I could manage to pop in and watch Christi's presentation. What a hoot! I kept trying not to laugh in the back. She was awesome - happy, polished, serious and not a bit nervous. Amazing! What a little public speaker! I truly couldn't believe how well she did.
After school we went to the hospital and I'm THRILLED to say that it appears that her blood counts "may" now be able to be supported without transfusions and it looks promising that they may rise enough to qualify for another clinical trial in an effort to keep battling this beast. Blood counts were: (Oh! Shoot! Well, I'll do this from memory now that I see that the napkin I used to write them down at the hospital was just used with dinner and is in the wastebasket - oh my!) Why am I not surprised??!! Hgb. 11.7 (Yahoo! NORMAL!) white 4.4 (Yahoo! NORMAL!) platelets 77 (MUCH improved! Normal 150-400). Praise God!! Also, THANK YOU to my sweet, sweet friend Becky who drove into the hospital to see if I needed her as I called her frantically earlier - in a needless panic! (Sorry, Becky! You'll NEVER believe this, but Shayne picked up Shayla from preschool and they were outside making snowmen!) Thanks Prayer Warriors!
In going to Betty Jane Preschool to pick up Shayla - who wasn't there, the wonderful Mrs. Newhard told me that they are conducting their assessments, preparing for conferences and Shayla said to the one teacher (She's in both the 4 year old and the 5 year old preschool classes.) "Mrs. Coleman already asked me these questions. Could you use your imagination and ask me something else?" And tonight she's outside with Shayne and Christi building snowmen, snowcheerleaders and snowcats. She came back in for more crackers. She said, "I need more. Some of them ended up in my mouth instead of on the snowman's mouth." As she left (with the door wide open and me clear across the kitchen) she turned around and said, "Close the door so you don't let all the heat out." (Me??????)
Thanks for letting me share a tinge of good news with you all! I know blood counts don't tell about her disease, which we pray is holding steady or decreasing, but the blood count trend is really looking like cancer treatment will be able to continue. Praise be to God the Father!! She's doing well with the CRA drugs; however, her face is beat red and she has a terrible rash, but we knew of the side effects before she started. No noticeable difference with her disposition though. Yahoo! Thanks my friends! Think Spring!
Last week I received this from her wonderful art teacher which I'll treasure forever: During class today we were discussing painting snowflakes. We had weaved cool colors and now wanted to paint snowflakes on the weavings. I showed some ideas to the class. Christi said that they were not realistic. Real snowflakes were made up of crystals. When put together they formed a six sided shape. Well, I am lucky to get my simplistic drawings to look interesting. I was so impressed and humbled by her. She is a darling!!!! I can't wait to hear what she comes up with next.
I responded back to Susan that I hoped she was polite about sharing this information and asked for her to accept my apologizes if she wasn't. Susan responded:
She was very polite about it. It was a wonderful mini-science lesson on snowflakes. I appreciated her knowledge and sharing. I forgot about the crystals and shape. She will make a great teacher someday!!!! What am I saying, she is a great teacher today!!!! She is teaching the world how to truly live!!!!!! God bless, Susan
Susan, thanks for sharing this moment and for your continued love, talents, humor and kindness. Christi thoroughly enjoys your great art classes that you work so hard to prepare and teach for all of our school's fabulous young learners! Thank you!
Christi's skin continued to get worse and worse as the second week wore on. I emailed a digital picture of Christi's hands along with their terrible, painful rash to a few neuroblastoma Moms knowing that their children also took this CRA drug in hopes that someone would tell me what to do about it. Well, all that responded said basically. "Och! Nope, never had anything that bad. Sorry." Christi handled it very well and I don't believe that anyone teased her about it as I feared.
So in an dual effort to provide her with some relief from dry air and her skin symptoms as well as to visit with some relatives, we cashed in the air travel vouchers Shayla and I received for staying back and taking a later flight home from Christi's incredible Make-a-Wish trip and therefore we will fly to Phoenix for five days. Yahoo!! Due to the way parent teacher conferences and my kindergarten teaching schedule fell, Christi will only need to miss two days of school and I won't miss any so we will get to spend nearly a week with her wonderful Aunt V!!!!!! We are really excited about seeing and staying with Shayne's sister and nephew as well as visiting with my cousin Lora and her family. I've also made arrangements to meet beautiful Angel Madison's Mommy, Laura, who still helps me with Christi's situation, despite her own terrible terrible loss. I'm looking forward to seeing all of sweet little Madison's scrapbooks that Laura has been working so hard on to forever preserve Madison's memories of her very short life here on earth.
Thursday was a special "Mommy and Shayla" day. After taking Christi to school Shayla went to the beauty parlor to have Cindy trim her hair. Next we stopped by Heidelberg's library to pick up some books I had on hold. (Shayla kept saying, "What do you mean they don't have any little kids' books here?" while we were in the college library.) Then it was on to visit with a dear friend and inspiring cancer survivor where Shayla did observe TONS of children's books. As we sat in her office, a confused Shayla asked, "Are you a little kid teacher or a grown up teacher?" Obviously, Shayla still didn't understand the "Professor thing" as once buckled back in the van she started to let her questions roll. The trip to the doctor's office to get her four immunizations required for school entrance was a breeze. I still remember just two short years ago THREE ladies needed to hold a kicking and screaming Christi down when she received her injections. Well, some things never change! Christi still puts up a pretty good fight - although now it's verbal objections and orders about doing things "her way" and Shayla barely cried. Her tolerance for pain is nearly unbelievable! When the doctor told me that she may experience irritability Shayla piped in with, "What's that mean?" Not wanting to establish any preconceived notions or to give anyone a license to be nasty, I stumbled a bit then came up with, "That means you may not feel so well so you will most likely sleep all the way home from Sandusky." as I dreamed about a silent drive home spent listening to the afternoon classics on NPR. (Ahhhhhh!) Her height remains above the 95th percentile and her weight is at the 70th percentile. (45 3/4 inches and 48 pounds)
Shayla enjoyed all the attention and posing for her fifth birthday pictures at the wonderful Picture People at the Sandusky Mall. We ate lunch and wandered around the mall while waiting to pick up our pictures. In one of the stores, Shayla pointed to a toy and said, "Someone show and telled that at my preschool." (show and telled!!) That left me smiling at how precious it is to hear young children acquire language. After getting her pictures picked out, we headed back stopping off at my friend Becky's house where Shari and Beth were also spending the afternoon. Well, I don't know if Becky really was making the chocolate chip cookies for the children after school or for our little get together, but sitting around her table eating cookies and enjoying dear friends was simply refreshing and hasn't happened for the longest time. Thank you, Becky! And Christi was happy to experience a bus ride home with Darin and Scott. What fun!
And the next morning, wonderful, bright and beautiful Becky was back in my kindergarten holding up a piñata while my students took turns swinging at it with a bat. I thought, "I can't believe friends like this exist. I'm so very, very blessed to have her." (Who would do THAT??!! Only Becky! Good thing she can move fast and is used to boys that play baseball! I had to take pictures ya know so my class could use them later for a language experience activity. Smile. I love you, Becky!!)
I knew things were going too well and I was going to hear the dreaded words, "My leg hurts." sooner or later. Well, Friday after school she walked down to my classroom and we hugged then she crawled up on my big stool while I was tending to after school tasks when she nonchalantly said, "My leg hurts." I know I didn't gasp out loud, but it was like my heart literally fell on my desk. While not unexpected, it was still a crushing blow! I was devastated! With cancer, especially when it's still in your bone marrow, leg pain is a HUGE indicator that the disease is packing the bone marrow cavity and is progressing. Knowing what we know, you don't brush it off as "growing pains". I was numb as I quickly finished my work and packed up my things for the weekend as I kept glancing at Christi reading innocently on the stool.
That night when Shayne came to Heidelberg after work, I talked to him and he calmly reminded me that leg pain is listed as a side effect of this new drug treatment she is on. Oh, I had totally forgotten about that! Mentally, I was packing our suitcases and making flight arrangements to get to LA for BSO (new, different chemos than she's had and the trial we hope to get her into if her disease becomes worse) and asking God for guidance and wisdom. "If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast." (Psalms 139:9-10) So now I will tell and attempt to convince myself, when she complains of leg pain again, that it's a side effect of this new treatment attempt - otherwise I'll never get to sleep. After Shayne's comments, I breathed a bit easier watching the girls at ballet and catching up with the other Moms. My prayers will now include that this leg pain is a side effect from CRA and not from her cancer. Lord, please hear my prayers.
Saturday morning Christi wanted to bake a fifth birthday cake for Shayla so together we did. Yes, it was really tacky - white cake with colored "things" inside, pink frosting with colored sprinkles (the perfect cake for little children I guess). She worked very, very hard arranging everything just so before Shayla woke up. That night we were invited over to State Representative Jeff and Carla Wagner's for dinner so we took the cake along and Christi surprised Shayla with it then. We enjoyed our visit with long time friends. (I still remember the cute little outfit they brought over for Christi just a few days after she was born.)
Sunday was the day we decided to celebrate Shayla's fifth birthday. The wonderful Lisa Handshoe made a gorgeous (and delicious) birthday cake. A special thank you to my incredible Mother for all of her help! The girls had a great day playing with their cousins! And the "Shayla Team" won the goofy birthday games I created as they defeated the "Adult Team" game after game! The final score was 35-0!
On Monday, Christi attended Girl Scouts after school. (She has the most incredible Troop Leader! What a gem! And what a blessing she's still feeling so well and can go when so many of our little friends are not doing very well. We've been blessed!) I worked in my classroom while Shayne went to Shayla's parent - teacher conference at preschool. Thank the Lord-Shayne brought home a good report. (Whew!) I'll put the comments here as I'm afraid I'll lose them if I don't. (Poor Shayla: I use to make a very nice birthday book for each girl's birthday. Recently, we read Shayla's 1st, 2nd, and 3rd birthday books. Then she asked, "Where's my fourth bday book?" It killed me to say, "Remember, Christi got cancer and we went to New York when you turned four and I haven't had time to make your special book yet - but I will!!" And I will!) Anyway, here are her preschool comments so I don't lose them: "Shayla is making friends and plays nicely with them. She enjoys projects and listens to directions. She is a good listener and retains the information. She can talk her way out of any situation (or into one Shayne joked!). "Shayla is like a breath of fresh air, always thinking, talking and on the go. She attends well and adds much to discussions." Mommy and Daddy are very proud of you, sweet Shayla and hope that your dear teachers are telling the truth!! Thank you, Betty Jane Preschool for instilling love and knowledge into little Shayla.
Tuesday after school I took Christi to the hospital to get her blood drawn. Shayne met us there as I had to get back to school to conduct my parent - teacher conferences. He then took the girls to the library where Christi walked in and kissed the wall. (I guess she really missed the wonderful library!) And Shayla, now that she's "as close to five as you can get without really being five" (her words!) she received her very own library card. She loved it!! And I loved the fact that Shayne was able to take her since I got to take Christi two years ago and still have vivid memories about how happy Christi was to obtain her own (real) library card with all of the pomp and circumstance, rights and privileges that goes along with it.
Well, the blood counts were "interesting." When Shayne and I discussed it he said, "I don't think there is a person on the planet who'd want to predict what it means." I think he's right. Unfortunately, her hemoglobin dropped again. Ouch! I don't think this is a good sign, but at least it didn't drop significantly. White 5.5 (YES! normal) Hgb. 10.9 - hmmmm. (Transfuse at 8, we should make it back from Phoenix okay) Platelets 113 (YES! Normal 150-400 - I think she's getting there!! Praise God!) With a great ANC of 3,900. I'll take it! Thanks, Prayer Warriors!!
Tomorrow is my favorite day to teach!! We will celebrate Valentine's day by doing lessons and activities about friendship. I've learned after many years of teaching kindergarten to have the children pass out their special valentines FIRST THING in the morning as they are so excited and just can't seem to concentrate on anything else until that fun task is complete - so that is what we shall do. Happy early Valentine's Day to you all! Christi worked extremely hard in making each of her classmates a very special, individualized card. She actually wrote a poem inside each student's homemade card which totally blew me away! I often forget she's six, oh, six AND A HALF (I stand corrected, Christi!) And there's enough glitter on them to give Las Vegas a run for its money. Shayla picked our darling Hello Kitty and Care Bears valentines at Walmart and proudly wrote her name on four of them, before declaring that she was done and I could write her name on the rest of them. (Thank you, Shayla! Smile.) Then she wouldn't part with them so her poor little classmates are getting plain pink cut out hearts that I whipped out at the last minute. Shayla put her valentines in her "apartment" behind the couch. (Don't ask!)
Tomorrow, we will meet and have an appointment with a "new to us" pediatric oncologist - Dr. Jantzy from Toledo. While CHOP will still be managing Christi's care, we felt we really needed a closer oncologist who could help with writing prescriptions and in examining Christi once a month for her required examinations as well as to get her port flushed. We are hopeful that this will simplify things in our crazy cancer life and keep us close to home more. Running to Columbus is definitely not convenient nor cheap.
When we first arrived in NYC over a year ago, we almost immediately found ourselves sharing a treatment room for chemo at the hospital with the most wonderful family - and they were from OHIO too!!! Shayne and I have always had a fascination with Oberlin College and we soon learned this great Dad was a Professor and the beautiful Mother, who always had her daughters dressed to the nines, was a doll! Christi immediately hit it off with the brave and beautiful Olivia and her sweet little sister Anna. Olivia was truly Christi's first real friend and they would call each other and talk on the phone back at Ronald and would play in each other's rooms for the longest times. It was precious! While thankful that Olivia was doing so well, we were crushed when Olivia and her family returned back to Ohio after growing so very fond of them. Now, I'm writing to request that Christi's tremendous Prayer Warriors, please lift up the Crowley Crew in prayer. Sadly, Olivia relapsed just five months after completing her treatment and did chemo again this fall. She returned to NYC for a successful surgery over Christmas with the awesome Dr. LaQualia and now is at St. Jude's undergoing a very serious and scary stem cell transplant. Like Christi, her prognosis is not good. (She suffers from relapsed Ewings.) Shayne and I wanted to take care of their dog for them since their families live far away, but knew that at this point in our lives we just couldn't swing that right now. We sent some packages to help Olivia and Anna pass the time, but then we realized that the best thing to do would be to ask for Christi's Prayer Warriors to please pray really hard for Princess Olivia so I am now writing to ask for your prayers for Olivia - a very, very special fourth grader. A website has just been established and Wonderful Webby linked it into Christi's Clubhouse. Please visit Olivia's site (and see her gorgeous First Communion Picture - just before she was diagnosed with cancer). THANK YOU, prayer warriors for joining us in praying for a full and complete recovery for Oliva!! You are the best and because of your tremendous divine intervention I believe it is the reason Christi has made it this far. Thank you!
With deep sadness I report that another Ohio neuroblastoma child became a victim of this wicked monster after relapsing recently and suffering horribly over the past few months. He wanted to go to a ranch and to be a real cowboy so last week the family flew to San Antonio, Texas where sweet Luke Sweet got to do just that - even though he was in a great deal of pain. Well, I think this week Luke not only earned his wings, but some spurs to go along with his boots and cowboy hat. While my heart breaks for his family (especially his Grandma I've fallen in love with due to her tremendous support) I tell myself that all of our other little Angels are wearing cowboy hats and boots and are having a big square dance celebration with Jesus now that Luke has joined them in heaven. My heart is heavy knowing he never made it back to the great Buckeye state to have his Grandma - who couldn't physically make the trip to Texas, hug him one last time. His web site is: www.caringbridge.com/oh/lukesweet. I know your prayers for strength and comfort would be appreciated by this sweet Sweet family as they try to live life without their precious son and grandson. Thank you. God's great blessings to you all! Here's wishing you a fabulous week!
As always, with love, thanks and gratitude,
Christi's Joke: What happens when a dog eats onions? (It's bark is worse than it's bite!)
What's Next? Christi will be off of treatment for two weeks. Yahoo! Thursday morning, Shayla's fifth birthday, will find us on a plane heading to the "Valley of the Sun" for five days! We land at noon. Aunt V has planned a 3:00 birthday party for the little Rooster Booster. YES! My NB friend Laura warned me the weather was "crappy" but I told her that I'd take 60 degrees over 20 degrees any day! Look out, Phoenix - here we come!
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