Sunday, May 9, 2004
"If you bungle raising your children, I don't think
-- Jacqueline Kennedy Onassis
Happy Mother's Day!! I feel so very, very blessed to be enjoying yet another beautiful Mother's day with our two beautiful daughters! Thank you, Lord!! I wish all of our Mothers a wonderful day - no matter where their children may be. We are especially remembering the mothers and families enduring this weekend without their children- there are no words to alleviate that horrendous pain. I also say a special thank you to my own wonderful Mother and Grandmother as well as my terrific Mother and Grandma-in-laws for being such fabulous Mothers to all of us. I continue to say about all of them, "I hope to grow up and be just like her!" I woke up very early this morning and quickly took off for the grocery store thinking I would be back before the rest of the gang woke up. I didn't know they were planning breakfast in bed for Mother's day. So when I walked in with the groceries I was very surpsied to see them standing there with a tray of breakfast foods complete with a tulip Shayla picked from the front yard. Lovely! This afternoon we shall visit with both of our Moms and perhaps both of our Grandmas too - that of course means traveling to three towns, but we'll see if we can swing it. We're hopeful!! We'd love to see everyone today! Now I shall back up a bit..............
I've never had a poem written for me- until last Friday night. And it really caught me off guard! I was about to head for the podium to give an acceptance speech when I heard Rich begin reading his work to the over 200 guests in attendance. Hearing the words was profound, yet knowing that what I had to say myself may be emotionally difficult for me, I tried to tune out his words at the time knowing I'd fully reflect upon them later in private. (The poem is at the bottom of this entry.) Rich finished. I stood up. Then after a couple of hugs, I reached the podium and another tremendous surprise occurred - not only did Shayne and the girls arrive from home and walk in a good 45 SECONDS before I was to receive the award, but the girls walked up to the front of the room and gave me flowers - lovely, fragrant lilacs! It was the sweetest, sweetest, sweetest thing! (Thank you, Shayne!)
The only problem then was - what to do with the girls. Hmmm. I whispered for them to walk back to Daddy, but a man taking pictures told them to stay. I started my speech, then noticed that Shayla was doing her typical "head tilt" which SHE thinks is cute. Well, there's nothing Christi despises more than her little sister tilting her head. So, the next thing I know, I'm speaking and I realize that Christi has both of her hands clasped on Shayla's head trying to straightened it back up. (Oh no!! Talk about not knowing what to do with everyone looking at you!!) Meanwhile, I saw Shayne motioning the girls to go back with him. Finally, I decided it best to try to ignore what was happening right in front of me and to just keep going on, so I did.
"I rise to give thanks and gratitude to the Awards Committee and to the Executive Committee for believing in me and for helping me achieve my dreams.
"Marilyn Cross" first became a part of my vocabulary in September of 1986 when I was a freshmen at BGSU and Marilyn (then the vice president) was a guest speaker at my college local. I was immediately "hooked" on this concept and soon attended my first student conference in Columbus. At that meeting, I ran for a state-level officer position - not really knowing what I was getting myself into, but inspired again after hearing Marilyn speak. As many of you know, I immediately became active at the local, district, state and national levels as a student member.
When I started teaching, a photo I had taken with Marilyn was placed upon my desk. When she, now as President, requested that I attend the Regional Leadership Conference, as a 21 year old first year teacher, I was shell shocked - but with excitement I agreed to attend. At that conference, Marilyn told me that I had the leadership potential required and that we needed leaders like myself. Because of Marilyn's encouragement, I soon found myself volunteering for more and more committees with OEA, NWOEA and SEEA. This grew and grew and over the past 17 years my association work has become a major part of my life. It is this work in which I believe Marilyn was instrumental in starting.
With shock and sadness, in February of 2002, I received word that Marilyn was desperately ill and didn't appear to have much time left. I went to visit Marilyn at her bedside - which proved to be my final meeting with this tremendous association leader, teacher and great friend of mine. Due to teaching, I was not able to attend Marilyn's funeral, but others told me that a letter I had written to her about how she touched my life so richly and how I held her in such high regard as a role model was shared by the minister at Marilyn's funeral and I was deeply, deeply touched.
I am humbled and greatly honored to be the first recipient of the Marilyn Cross graduate scholarship to help continue my doctorate work at OSU where I am currently pursuing my Ph.D. in Integrated Teaching and Learning with early childhood specialization. I am now in my second quarter and presently maintaining a 4.0 G.P.A. It is a 90 hour program and all of the work must be done on main campus - two hours from my home so it will be a very slow process....just taking one class at a time, but I'm happy to be doing something that I've said for years and years I would do and also something that I had planned to start the year Christi was diagnosed. I decided that this was one more thing I wasn't going to let cancer take away from me. And thanks to this scholarship TWO of my summer classes will be paid in full! Thank you!!
As some of you noticed earlier this evening, tonight I am wearing my "Count on Cross" button as it reminds me of some of my favorite association memories - campaigning for Marilyn! Our oldest daughter, Christi, was just six weeks old when she was in Atlanta also campaigning for Marilyn as an infant in my baby pouch wearing a "Count on Cross" button too. Now my red "Count on Cross" shirt has attended nearly every OSU class with me thus far - in my book bag. My sister says I'm too sentimental, but carrying my Marilyn shirt to class is a great physical reminder to me to that life is too short and don't put off pursuing dreams. Marilyn would expect no less!
In closing, I would like to thank NWOEA for their constant support since 1987. And I'd like to recognize my hard working, tremendous local President and my friend- Jerry Schlick. Finally, long over due recognition to a tremendous individual who could never be thanked enough. This would be....the "banker that I sleep with," my "high school sweetheart", the "World's Greatest Dad," "my first husband" and my personal cheerleader, supporter, wonderful husband of 12 1/2 years- the love of my life.....Shayne Thomas. Also, with me this evening are our 5 and 6 year old daughters - Shayla and Christi Thomas. And thanks to Gary granting Christi "guest" privileges tomorrow she will be on the floor of the RA to help me make a point of personal privilege to thank our wonderful association family for their generous support with Christi's battle. Thank you, OEA!"
What I couldn't mention in my speech, because of Christi's little ears, was the thing that really makes this award so very, very special........... After visiting with Marilyn at her bedside just weeks before she died, I drove home and during dinner I shared with Shayne my visit with Marilyn. Christi was only four then, but she was immediately in tune and as soon as she was dismissed from the table she started on her first of many, many, many art creations she wanted to send to "Mommy's Teacher Friend, Marilyn". Christi kept this up for weeks and would continually ask, "Is Marilyn better yet Mommy?" After I quit writing Marilyn's address on the envelopes for her, Christi then memorized Marilyn's address and in her four year old handwriting was writing the address and making MANY daily creations to send to her. After sending the first few, I put a note out to our postman to please just throw them away. (Christi was insistent in watching me "mail" the envelopes - minus the stamps, EVERY day!) Following Marilyn's death, when Christi inquired, we told Christi that "Marilyn's no longer in pain and that she's in a better place now", not being able to confess what had really happened to the fine woman she took an incredibly strong interest in trying to cheer up and praying for at night. Later, I learned from Marilyn's family that they hung Christi's creations up on Marilyn's walls and tears pour down my cheeks realizing I was finally able to do something nice for a great woman who did so much for me!
Ironically, less than six months after Marilyn's death from cancer, her "little fan" and our now five year old daughter, Christi, was also diagnosed with cancer. Even though it has now been classified as "terminal" because she has not responded to traditional protocol, there is currently no known cure and she is participating in her third Phase I clinical trial, I believe that the very real possibility that Christi is doing as well as she is, is because the one who used to watch over me as a young teacher leader is now watching over my daughter and taking care of her from above.
Finally, it came as a complete shock to me that after the Awards Banquet last Friday Shayne pulled me aside and said, "Be ready. Christi asked, "Marilyn died? What did she die of?" Shayne told her we'd talk to Mommy about that later. That was over two years ago!! How does she remember these things?! While the evening filled with friends and family was absolutely delightful, I couldn't wait to get back to the hotel with the girls, to put on our jammies and to eat popcorn in bed while watching cartoons! Before heading out, I had the chance to chat a bit with Congressman Ted Stickland who told me that I was a great public speaker. I quickly changed the subject before he'd remember the little "incident" with Christi trying to fix Shayla's head and thanked him for his work on behalf of children and education.
In the morning, Christi and I went to the RA downtown at Vets Memorial Auditorium. She received her "guest" badge which gave her privileges to get past security and onto the floor of the assembly. I called in for a "point of personal privilege". Soon the resolutions were finished and I heard Gary say, "The Chair recognizes, Angela Thomas - Seneca East." I hopped right up assuming Christi was behind me, but she was in the middle of a game on her Gameboy so it took a bit to get to the proper stopping part. "Angela Thomas, Seneca East and I have someone here with me." Then camera picked her up on the big screen in front and as soon as I started to lift her up to the microphone to introduce herself those wonderful, nearly 1,000 friends, started in with their sweet, sweet applause - so happy to finally see this little girl in person and doing so well. Christi said, "I'm Christi Thomas. I'm six years old and go to Seneca East. I'm in the second grade," but I'm positive no one heard a single word she said because the loving applause went on and on and on. I could actually hear my fellow Delegates surprised and saying, "It's Christi!!" and "Is that Christi?!" This little lady definitely knows she is loved!!
"Thank you, President Allen and good morning to our dear OEA family!
Due to Christi continual treatment for cancer, this is the first RA in two long years that I've been able to join you in person and it feels fabulous. We rise before this tremendous, loving and generous body to share our family's deepest thanks and appreciation.
At this RA one year ago, our family was living in a room in the Ronald McDonald House of NYC- complete with two twin size beds. Sitting beside Christi's hospital bedside following this RA, I pulled up my email only to discover that you sang her happy 5th birthday and I was deeply moved.
This past fall we were living in yet another Ronald McDonald House while Christi was enduring cancer treatments in Philadelphia. Once again, I pulled up my emails and learned of your amazing districts' fundraising efforts in addition to this loving body's generous collection to help with our monthly bills that are over what insurance will pay. Thank you.
We truly appreciate your help. Never did we ever imagine that we would be walking in these shoes and never can we repay you for your kindness, help and support. We will of course forever remain full of gratitude and appreciation for our dear OEA family's help during these difficult days.
Not only did I want to say thank you this morning, but I also wanted you to see for yourself how very, very well Christi is doing right now. We are most thankful that she is fully participating in school and ballet and she receives oral chemotherapy at home three weeks out of the month.
In closing, some of you may read my weekly journal entries on ChrsitiThomas.com, and if you do you know I end each update with a joke from Christi. Therefore, in ending this point of personal privilege Christi has been preparing some joke for you. Let me warn you, I'm not sure what she may say, but we say Thank you, OEA!"
I lifted Christi up and she said, "What makes teachers so special? They're in a class of their own!"
As the RA ended, Christi and I head out and enjoyed exploring at COSI across the street from Vets, while Shayne and Shayla attended "First Saturdays" at the Columbus Art Museum.
Now on to the reason you're here - "The Christi Crusade"!! Here goes: Thanks to Shayne's banking school friend, Gwen, who just made a little "typo" I learned that Christi and I will indeed be on the same plane both ways next week when we make our quick trip to Philadelphia. Whew! Praise God!! We also praise Him that Christi has been feeling fabulous and we fully feel the tremendous blessings by all of that!! She's been on a huge piano playing streak and doing some bike riding (more like racing!) in addition to school and ballet.
Unfortunately, for a few days this week, she complained that there had been some pain behind her right eye - of course this put us into a terrible panic, but like Shayne talked with Dr. Suzi about. "There's nothing we can do and it doesn't change a thing." Well THAT doesn't exactly make it any easier to sleep - even though it is true. (Neuroblastoma is known for metastasizing to the orbits of the eyes, so of course that is our fear and worry.) We shall find out in a matter of days (and more sleepless nights when I sit and write these "updates"). And presently she's again pain free so perhaps it was nothing. (We pray!) Also causing sleepless nights this week was the news that two of our friends' children who were NED (and our inspiration) have again relapsed. Cancer is cruel! I continue to come back to - why don't we have a cure for this??!! It's 2004!!! Our hearts ache for these parents and children knowing fully what lies ahead.
Tuesday's blood counts were: 3.3 white, 10.5 hemoglobin, 111 platelets, with an ANC of 2,000. All of her counts were down a bit, but still steady counts for her. Wednesday's visit with the family doctor again was a needless joke. The doctor was so nice telling me to tell the CHOP study nurse or doctors to call him because it's unecessary that she be seen by him when she's having no signs of neuropathy (nerve damage / pain). He said he'd take the blame and I don't need to take any more. (I received a "not so nice" call from the study nurse about my lack of taking Christi for her twice weekly blood counts, etc. last week so this week I "played the game" and attended everything required and jumped through every hoop.) Friday's blood counts were taken after school. Again down a bit, but probably considered stable and steady for her. 4.3 white, 9.9 hemoglobin (transfuse at 8) platelets 107 with an ANC of 2,800. (Her platelets need to be at 100 or higher in order to start another round of ABT. Yikes. That's close!) Finally, she has yet to complain about taking the ABT - 751 (oral chemotherapy pills). What a little trooper!! That's all on the medical front!
Prayer Request: That Christi's test results indicate no new disease. (And of course we pray for NED - no evidence of disease, but we aren't foolish enough to believe that we'll ever hear that glorious news.) Thanks for checking in. Here's wishing you a fabulous weekend and a wonderful Mother's Day - no matter where your children may be. Our hearts go out to all of the Mothers of children who are back in God's kingdom and those unable to experience the tremendous blessing of Motherhood.
With love, thanks and gratitude,
Angela and the Thomas Team
Christi's Joke: What did one math book say to the other? (I've got problems!)
What's Next? The oral chemo she's taking (ABT - 751) will continue through May 11th.
On Tuesday after school, she'll take a sweet little friend to McDonald's Playplace for her birthday treat. (We'll have her blood work drawn before school so that she can play, play, play after school!)
On Wednesday, May 12th - her "7th" birthday, she will pass out her "no bake cookies" to her sweet classmates and teacher and she and I shall head to Columbus after school. While this is all to be a surprise for her, we will meet our two great COSI staff friends at Chuck E Cheese and then have a little "slumber party" at Traci's apartment in Columbus. This will be a tremendous THRILL for Christi and I am very appreciative of Jenn and Traci's love and friendship.
We'll leave for the airport at 5:30 AM as we have a 7:25 AM flight to Philly on Thursday, May 13th. We're scheduled to land at 9:00 AM. (No food or drink after midnight due to being sedated for bone marrows. Hopefully, air sickness won't be an issue with Christi - often times morning travels are difficult with this "queasy stomach" girl. I still remember when she was two and we were driving from Las Vegas to Phoenix. As we were going up and down in the valleys entering Sedona, Christi shouted up from the back seat, "Stop, Daddy!! You're hurting my feelings." She didn't understand "car sick" but knew that we talked about your feelings being inside you and not to hurt anyone's feelings. So funny!! Later she slipped while hiking and I actually pulled cactus prikers out of the seat of her wind pants. THAT she remembers!) Anyway, tests to be conducted at CHOP on Thursday beginning at 9:30 AM (yes, that's 30 minutes after our schedule landing!) include: bone marrows, CT scan and the MIBG isotope injection as well as her regular exam by an oncologist. We'll overnight at the Ronald House if they have a room for us. If not, we'll get a hotel room somewhere. With the bills that have entered our mailbox, one night's lodging isn't going to kill us.
On Friday, she'll have her MIBG scan and the ECHO, EKG and the peg board tests. I shall meet with Dr. Suzi to go over the test results late Friday afternoon while Christi plays in the playroom. Pending good results (disease same or better, no heart damage and platelets over 100) I shall return with the second cycle of ABT drugs in hand! (Lord, hear our prayers! I really want to keep marching on with this one!) If the disease is worse, I believe we'll go back to the Irinotecan low dose chemo she did for three cycles at home this past fall. As Shayne and I have discussed, we can handle that too. While I hate to see her hooked up to an IV pole for a few hours each day in the summer, when we first did this chemo at home last fall we couldn't believe what a breeze it was after all she had been through so again we shall endure okay if need be. (We just strongly prefer two easy pills a day instead of all of this hassle, but test results will determine everything And our prayers are going nonstop for good news.) We shall return to Columbus before midnight on Friday the 14th and I'll drive us home - pending no flat tire this time - hee hee.
Sunday, May 16th will be her birthday celebration. (IF YOU'D LIKE TO ATTEND, WE'D LOVE TO HAVE YOU!!! PLEASE EMAIL AND LET ME KNOW! As Christi says, "The more the merrier!" NO GIFTS PERMITTED.) It will be at the Ritz from 1:00 - 3:00 PM. "Rumpelstiltskin" will be performed by Madcaps and following will be many arts & crafts and cupcakes. Hopefully, it will prove to be simple, educational and fun afternoon for children of all ages. This is the day that the Lord has made; let us rejoice and be glad in it. (Psalms 118:24)
And Christi & Shayla will have their ballet recital on June 12th and 13th at the Ritz. (Tickets go on sale on Monday.) All of the Dance Unlimited girls looked so lovely Saturday morning when their pictures were taken at Rob's awesome studio - Picture Perfect in Tiffin. He work is wonderful and I'm very anxious to receive the girls' pictures. Never did I think Christi would really get to do all of this again. You cannot believe the rich blessings I feel!
**NEWSFLASH: There will be an American Red Cross Bloodmobile drive held in Christi's honor on Saturday, June 5th in Fremont. There will be two locations. (Fremont Rec Center & the Fremont YMCA). When Christi was told that a sweet individual wanted to do this, she sweetly responded, "What can I do to help? I'll help anyway I can. Anyway I can." Therefore, Christi is planning to be in attendance at both locations helping to serve cookies and to calm squeamish donors by holding hands and reading stories.
Love, peace and comfort to you this Mother's Day from the Thomas Team.
Written for Angela:
by Rich Javorek, Teacher from Brunswick
As the first bearer of Marilyn's legacy, you must know that Marilyn believed in setting standards. She had high ones and the hope that in others she might inspire standards to be met. She believed in scholarship and the quest for knowledge that empowers young leaders to seek higher and higher towers to speak from, realizing that power must always be grounded and tempered by reflective wisdom.
As you go forward carrying out your life tasks, may you always remember this request. When you climb higher and higher towers, remember to look back and see clear and clearer still, that you can climb, because of the shared power that comes from those you have met along the way. If only you will, the tasks will be easier still, and she will know. May you plant your flag on high towers next to Marilyn's.
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