Sunday, September 28th
We worry about what a child will be tomorrow,
We're loving this "normal" life we're currently experiencing and will continue to do so until Monday when Christi will begin her tenth round of chemo. (Tenth round of chemo?? Can you believe we're still at conquering this beast?! Ugh!! Well, given the alternative of not fighting it - I guess I'll take it!) Christi, Shayla and I have been THRILLED to still be in school. Christi so far has attended all 26 days which we consider to be a real blessing. Thankful we are she remains feeling well and pain free. My goal is for this update will be short since I've been so preoccupied with my wonderful kindergarten students. It amazes me every year how much time I spend preparing, planning, organizing, reflecting and assessing, but it's all part of teaching and all something I love despite the fact how much time it eats up.
Last Friday and Saturday, I was able to attend my first OEA meetings in over a year. I have served on one teacher committee or another for the state organization since 1988 when I was a college student so when one of the sweetest staff members gave me a big hug and said with tears in her eyes, "Welcome home!!!" I fought my own tears back as I definitely consider that awesome place home and I didn't want to cry in front of anyone. I can't even tell you how nice it was to see my beautiful association family in person and to finally be doing something productive and normal. When folks would ask, "How is Christi?" I would respond, "She's stable. And if we can't have "cured", we'll take stable and be thankful." And thankful we are!!!!!
I knew Shayne was concerned about having to take both girls to ballet classes that Friday afternoon since I was in Columbus, yet I assured him that if he could put a needle into Christi's chest he definitely could dress two little girls in pink leotards and get them to their classes at the correct time. (And, as always, he did GREAT!)
Back in Tiffin it was the annual Heritage Festival Weekend Celebration, so Shayne took the girls up to watch the morning parade which they thoroughly enjoyed. When I returned home late Saturday afternoon, we went up to the Heritage Village area. It was such a joy to watch the girls playing the "old-fashioned" games (especially tug-of-war and walking on stilts) and feeling so well!! We've been blessed!!
I do have a "funny" little Shayla story to share that happened while I was attending a different teachers meeting earlier in the week. Christi and Shayne were learning about electricity and trying to build something (God help me!) at the kitchen table. Shayla came down and asked for a pair of scissors which he innocently gave her (BIG mistake, Shayne!). Nearly an hour later, Shayla arrived back in the kitchen with cat hair all over her clothing. She knew she was in big trouble. Come to find out, she had both cats in her bedroom and she gave them haircuts. Shayne said that there was cat hair all over her room. (Yes, this awesome guy knows how to run a sweeper better than I!) He put her in a time out chair and went out to laugh and laugh and laugh. I'm just thankful that she didn't cut her own hair like she did back in February at Riva's in NYC. I said then she really learned a lesson and would never cut her own hair again and she didn't. Shayne was just glad that both cats still had their ears and tails and that she hadn't found the shaver. I came home and discovered two hideous looking cats with chunks of hair missing. Shayla told me, "Buttercup held real still, Mommy." Oh my! We love you, Shayla! Thanks for the laughs!
On Tuesday, it was a great feeling to attend my first NWOEA workshop in nearly a year. I wanted to speak to the nearly 150 members in attendance to try to thank them for their support but I was very concerned that I would break down like I did with my local members. Somehow I managed to address and to thank them even though I could never thank them enough for their love and support. They're an awesome group I consider dear family and it was a wonderful workshop with two exciting and lively speakers which really geared us all up for the work we have to do for our students. (Thanks to former Utah's Teacher of the Year, former Working Woman Magazine Columnist and fabulous current NEA Secretary - Treasurer, Lily and awesome OEA President Gary Allen for their wonderful and motivating presentations!) I drove the national speaker back to her hotel and then drove home. When I saw a sign that said, "Tiffin 10 miles" I received a phone call from Shayne. Lily had left her purse in my van. She was flying out in the morning so I turned around and drove all the way back to Findlay. I turned up the CD I had just received from another neuroblastoma Mom and reflected back to the workshop and to the many nice conversations with the teachers I had. Soon after settling in late Tuesday night with Shayne, he showed me the picture that Shayla had created for me on the side of a cardboard box. It was how Mommy would look when she came home from her teachers meeting. It was the sweetest art work - a stick person with my arms out wide and a huge smile on my face. Absolutely precious! I don't deserve this awesome family!
Very ironic that Christi's class goes to the library on Tuesday. So the same night I was at my NWOEA work, I came home to discover that the book Christi selected at the library was the book that 1 1/2 years ago she presented to the school library from SEEA due to a grant awarded to SEEA by NWOEA!!! Christi and Shayla were dressed up as Thing One and Thing Two and somehow SEEA President, Jerry, talked me into dressing up as the Cat and the Hat and driving to all three buildings to read Dr. Seuss books to the students for Read Across America Day. Christi still talks about that and asks, "When can we do that again?" She loved that special day and I thank SEEA and NWOEA for allowing me to have those special memories. So I read that book with Christi and reflected back to ordering and receiving all of those great books which we read together before distributing them to the schools.
This week Shayne somehow carried the bed from my childhood up from the basement and moved it into Shayla's room so that she has a big bed instead of her little plastic cottage bed that only holds 1/2 of a grown-up. Shayla hates agents of change so we were most concerned about how we would pull this off. My husband is simply amazing. I came home from school and Shayla said that she had something to show me. My jaw dropped when I saw her bedroom all fixed up and she was so happy with her new bed that was "Mommy's when she was a little girl."
Friday after school the girls again attended ballet classes. With great amazement and thanks to the Lord above Christi again fully participated in dancing, skipping and jumping for the entire hour long class. This weekend she also went hiking for nearly two hours with Aunt Marty and Uncle Jeff and the rest of us. I feel really good about this. While I know how tricky and wicked neuroblastoma is, I have to believe with her feeling so well and not having any leg pain that this is a good sign. I pray that this new chemo (Irinotecan) is doing more than palliation like we've been told. I pray that this has gone against all odds and diminished or eliminated her cancer somehow. I pray that this is the answer to our prayers for a little girl whom we've been told has no known cure for her disease. October scans and tests at CHOP - yet to be scheduled will let us know what's really going on inside her tiny body, but I feel really good. Thank you Lord for these great days, times and memories. We're literally soaking in every single moment and our brains are bursting full of happy memories of our beloved daughters.
I received a sweet and moving email this week. I'll share a bit of it here: Angela, I would like to share the following personal story with you. (She went on to explain her trial with skin cancer that was diagnosed and a surgery that followed and the many expensive tests that go along with it. ie. PET scan $9,000 in addition to mind-boggling research you do and emotional strain one experiences with cancer.) Now, the reason why I wanted to share this with YOU. I am not a big fan of large machines, needles, and invasive body prodding (who is??), but God has given me an incredible gift this last six months that I've known you. When having to undergo procedures, tests, needles, and periods of waiting....I prayed and thought of Christi, her journey, her strength, and told myself that if she could undergo what she has gone through....I could surely handle the small bit that God was allowing to come my way. Her little smile and her bravery have helped this grown-up get through some tough times, and I want you to know what a blessing she (and you) have been.
In 2 Corinthians there is a verse that says "For we are afflicted so that we may comfort those who suffer with the comfort we ourselves have received"....God allows things to happen to us so that we can show others His love. Although it is very hard to "take joy when we face trials of many kinds" as James says, what I have experienced in the short 6 months has changed my life forever and has put a special place in my heart for families who face this beast (as you so appropriately call it). Many tears have been shed as I thought of the intense pain that a parent must feel as they decide what to do, what doctors to see, what tests to take, which trials to choose, and on top of everything....the thought of how to financially pay for all of these items. And at the bottom of these decisions is the life of their precious child. I count it a privilege to have a glimmer of understanding (and that is all I claim to have) of what the beginning stages of facing cancer feels like. I hope that you find it appropriate that I shared this with you. I wanted to tell you earlier, but felt strongly that I would not until I had only good news to share. So, thank you to you, and to Christi from me. She has been my little angel! I look forward to talking to you soon. Wear your sun block!!! ;o)
Finally, in closure of this week's journal entry, like I've done with all of my September journal entries, I will again say that September is National Childhood Cancer Awareness Month. Thank you to those who wrote letters to your Congressmen asking for increased funding for pediatric cancer research. My teacher friend, Marj, copied me on her letter she wrote and it was so lovely. I know from my OEA work that politicians typically need at least 25 letters to cross their desks before they take action. Have you written yours yet? (Smile.) Please. Lots of little ones - yet to be diagnosed and their families are counting on you.
So, as childhood cancer awareness month winds down I again want to urge you to continue your advocacy for childhood cancer issues. On the legislative front it appears that Ohio has solid supporters for our cause in Congress. We have personally felt the wonderful support from Congressman Gillmor and his family. (Thank you so much!!!) Additionally, Ohio Congresswomen Deborah Pryce had a beautiful eight year old daughter (Caroline Pryce Walker) succumb to neuroblastoma thus she has become the top champion of Childhood cancer causes in Congress. (Thank you, Deb!) Below is an except from The Quarterly Newsletter of the Children's Oncology Group
Legislative Initiatives of NCCF on behalf of COG Legislative and advocacy initiatives are proceeding on schedule and are complementing each other in strategy and purpose. We have a champion for our legislative efforts in the House and in the Senate.
Congresswoman Deborah Pryce of Ohio submitted appropriations requests to the Subcommittees on Energy and Water ($2 million), Veterans Affairs, Housing and Urban Development ($1 million). Senator Mike DeWine of Ohio submitted appropriations requests to the Subcommittee on Labor, Health and Human Services, and Education ($5 million). These requested appropriations are for support of translational research in pediatric cancer conducted by the Children’s Oncology Group.
When writing your letters to request increases in funding for childhood cancer research, here are some talking points:
Cancer in infants, children, teenagers and young adults is more common than most people realize.
Currently, one in every 330 Americans develops cancer during childhood or adolescence, before the age of 20. On the average, 46 children and adolescents are diagnosed with cancer every weekday in the United States. Rates are rising.
On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.
Nationally, the incidence of cancer in children is more than 20 times greater than the incidence of AIDS in children.
Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.
Cancer in childhood occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region.
The cause of most childhood cancers are unknown.
At present, childhood cancer cannot be prevented.
In the United States, the incidence of cancer is increasing among adolescents and young adults at a greater rate than in any other age group, except those older than 65 years. The cause of this increase is unknown at present.
Relative to the rate of increasing survival in children, the treatments for adolescents with cancer generally do not produce as favorable cure rates as for younger children.
Cancer care in the young has led to many developments in treating adult cancer patients and victims of other diseases.
Historically, the investment in childhood cancer research has paid dividends in understanding the basic biology of cancer, treating adults with malignant disease, and providing principles of therapy and advances for other diseases of children and adults, including the following:
The first evidence that chemotherapy could be curative of human cancer resulted from a clinical trial in children.
The concept of combined multi-agent chemotherapy was first tested and demonstrated to be effective in children with cancer.
The principal of multimodal therapy (surgery, radiation and chemotherapy) was pioneered in treating children with cancer.
The use of body surface area for more accurate dosing, and of lean body mass in overweight patients, was first formulated for and tested in children with cancer.
Primary chemotherapy prior to surgery began in treating children with cancer.
Many of the current principles used in transfusion of blood components, including platelet and granulocyte transfusions, were developed in treating children with cancer.
The "two hit" hypothesis, which considered the role of genetics in causing a cell to become a cancer cell, was first proposed and supported by studies of children with cancer.
Discovery of the first human gene, MYCN, and its use for prognostic classification and selection of treatment resulted from genetic studies of children with neuroblastoma.
The discovery of p53 gene mutations as a primary determinant of the cause of cancer, progression, and treatment resistance resulted from studies of childhood cancer patients.
Detection of residual disease, even after all macroscopic and microscopic evidence of cancer has been eliminated, and of using minimum residual disease to alter concepts of therapy and to predict which patients were likely to relapse, originated as a result of treating children with leukemia and neuroblastoma.
Many of our listserv friends, attended Gold Ribbon Days in Washington DC last week. While this was definitely not the year to attend for us, it is something I have high hopes of doing in the future. While neuroblastoma has no celebrity to support the cause, there are beautiful baldheaded children everywhere who are constant reminders of the need to increase funding for childhood cancer research and there we some running around Washington last week. How cute! I am happy that a well known individual addressed the National Childhood Cancer Foundation (NCCF) in DC at "Gold Ribbon Days 2003" as well as Ohio Congresswoman Deborah Pryce. First Lady - Mrs. Laura Bush addressed the group and talked about survivors in addition to the President's own loss of his little sister due to childhood cancer and that amount of work that remains yet to be done so that every child has a cure.
Thanks for all! We appreciate your love and support and are most thankful and grateful! Have a wonderful weekend!
Christi's Joke: Christi may have thought it was a good joke at the time, but Mother was not impressed to learn that she tied another little second grader's shoe strings together during school this week. (Both little girls thought it was funny.) Thankful I am that she's feeling well and silly, yet I was not pleased. I said to her sweet teacher out in the hallway, "She doesn't even tie her own shoes very well." The teacher laughed and said, "But she can make a really good knot!" (Oh my! Sorry, Kristin!)
What's Next? Round #10 of chemo begins after school on Monday. It will run for two weeks and while we hope it is effective in keeping her disease stable and at bay, we also hope that it won't make her too nauseated nor have too much diarrhea. She still weighs less than she did 13 months ago, but its difficult to eat when you feel like you have the flu and are "losing your cookies" a lot due to the toxicity of the chemo. It's also now starting to dawn on Shayne and I that again we will be leaving soon. This week I started re-packing. Also, this week my teacher friend arranged for the gorgeous cross-stitched ballet theme quilt that some sweet teachers at an elementary school in Texas mailed to Christi in New York so that I could hang it up and display it on Christi's bedroom wall. (Each teacher stitched a square - it's stunning!) I know that there is a chance that Christi will never come back home after her life threatening treatment in Philly, yet having her room finally finished for her to see and enjoy before we leave was very, very important to me. Thanks, Melody!!! It looks beautiful properly displayed up on her wall in her ballet theme bedroom!
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