Journal Entry

Thursday morning, August 14, 2003

"Quiet Hero"

My hero is the quiet type,
no marching bands or media hype,
but through my eyes it's plain to see,
a hero God has sent to me.

With gentle strength and quiet pride,
all self concern is set aside,
to reach out to our fellow man,
and be there with a helping hand.

Heroes are a rarity,
a blessing to humanity.
With all they give and all they do,
I'll bet the thing you never knew,
my hero will always be you.

Author: A cancer child's parent

Our hero is not so quiet, but nevertheless we love her dearly!!! She gathers no media attention and raises no funds to finance a cure, yet she receives all of our undivided attention and we are thankful to have so many Christi Fans in the "Christi Crew" still supporting and loving her throughout this trial. It's been a long one; there remains no end in sight, still she remains our hero - just like all of these cancer-fighting kids. Every day, all around the hospital, I see other dads and moms with their kids bringing them comfort, favorite foods and toys, and always trying to soothe and to help pass the countless hours spent waiting and enduring tough treatments and countless tests. Just like their kids, they don't want to be here. They want to be working, mowing their lawns, tending to their other children, climbing the corporate ladder, going shopping, etc. etc.. But instead they're here because their beloved children are here; they don't have a choice. Regardless of how long the day gets, or how long it takes for the bandages to come off, or the medicine to go down, or the IV to be inserted, or how frustrating the endless waiting becomes, the parents will always be there for their kids. It doesn't make us heroes; it just makes us parents. Our kids are the real heroes. God, please bless these precious, courageous, sick, trusting heroes. They are our world! They shouldn't have to suffer like this.

Last week's chemo went pretty well. We like this "low-dose stuff" although I joked with Shayne and some Moms and Dads, "No wonder it doesn't do anything to help these kids. It's so mild!" Thursday Christi wanted to go back to the Art Museum for "Start with Art" after her chemo infusion ended so we did and then we let the girls play at Central Park. Christi doesn't get sent home with an IV pack for this "low dose" chemo so she's free at night. YES! I'll take it - not being tethered to a backpack full of fluids is much easier on all of us and helps her to feel normal. (Whatever that is. Maybe the only thing it really is is a setting on the washing machine!! hee hee)

Shayla only attends preschool three mornings per week so she joined us at the hospital on Friday morning. I slipped off her shoes and lifted her up on the scales right after the nurse was done with Christi because my Mother had been inquiring about Shayla's weight too. Christi weighed in at 48 pounds and Shayla weighed in at a healthy 44 pounds. Recently, Christi's height was recorded by the NP nurses at 122 cm. (48 inches) Christi continues to say that her side area is still numb and I think it is still swollen a bit from her surgery. She continues to hold her arm out a bit awkwardly indicating to me she is still experiencing discomfort in that area - even though she says it is fine. I think she tries to protect us by saying things don't hurt when really they do. She's tough!

The hospital gave us four tickets to see the "best of baseball" - the New York Yankees play on Friday night. (Thanks, MSKCC!!!!!!) We first stopped by the Whitney Museum of Art and then we rode the subway right to Yankee Stadium, home of the NY Yankees and 26 Time World Cup Champions. We had a nice summer evening together, but it made Shayne and I reflect back to the last professional baseball game we attended with the Old Fort Bank last summer in Cleveland. Now THAT was a fabulous night with friends!! (Not to mention so many of Shayne's colleagues treating the girls to entirely too much junk food!! Oh, the girls had a ball!) The girls were thrilled to watch the Yankee's "Godzilla" (Hideki Matsu from Japan) hit one out for a home run hit in the 2nd inning.

Last Friday's blood counts were again excellent at: white-5.7 (normal) hgb-11.2 (nearly normal) platelets-239 (normal) and an ANC of about 4,500! This chemo should kick in and take care of fabulous blood counts for a while I think.

In my last journal entry I think I wrote a wee bit too soon about this chemo being mild. As soon as it was sent, she started having episodes of vomiting and making some rapid trips to the bathroom. I know it says "lethal" on the IV bag; therefore, I guess I should expect some side effects even if it is "low dose" chemotherapy. Is it the disease that's so nasty, or the treatment?!! Ugh! Regardless, I dislike it all!!!!!

Saturday morning was a repeat of Christi again "losing her cookies" but then she started to keep food down about noon so we went to see "Green Eggs and Hamedeous" at Lincoln Center. Throughout this incredible educational production (Mostly Mozart series) I kept thinking, "How can I find a grant to get this to come to my school??!!" The conductor taught the children how songs were put together in the same manner as great literature is created. Of course he just happened to have a tremendous orchestra at his disposal. It was fabulous!!! Next, we took a subway ride down to Soho. We had been wanting to go to a teacher's dream store - The Scholastic Store in NYC!!! YES!! Christi read to Shayla and then while Shayne read to both of them in this incredible store I ventured up to the second floor - the educators floor. I must admit I shed a few tears there. I always love this time of year going to a great teachers' store and buying new stuff for incorporation in my classroom. I absolutely love getting my classroom all ready to go again and thinking about the lives I may change in a positive way as a result of my teaching the precious young minds. There were so many new books and materials; it was really hard emotionally for me there knowing that I am not able to start the year off and I wonder when I'll get back to my wonderful school and if it will be with or without Christi. Shayne tried his best to cheer me the rest of the day, but I was really really glum.

Next, we wandered a bit through Little Italy and enjoyed a fabulous Italian lunch/dinner in the late afternoon at Rays. The girls enjoyed eating Stuffed Shells finishing every bit of the entree they shared and reminiscing about "Miss Mary" bringing them for Christi when she was at Children's in Columbus. The final stop of the journey was Toys R Us in Times Square. Cody, from California, sent the girls Toys R Us gift certificates. They picked out Star Wars toys. (Can you tell Daddy was assisting the girls and not Mommy?!!) And Christi finally got the Rubix cube she's heard Shayne and I talk so much about. (Are we really that old?!) She's been working hard at it. The girls enjoyed playing Miniature Golf back at Ronald with the fabulous Saturday night volunteers when we returned. (Thank you!)

Late Sunday afternoon we walked to Central Park and stumbled upon a free play (based on Lewis Carroll's Alice in Wonderland) in front of the amazing Alice in Wonderland Statue. I spread out a blanket and we all really enjoyed this hour long show.

Sunday night left Shayne a bit more glum than usual. At one point after staring out the window he said, "Well, the Seniors should all be settled in their dorms by now." This should have been Shayne's final year at Graduate Banking School (where he met his friend and running/work out buddy, later turned "Webby" Eric) at the University of Wisconsin. The girls and I were planning on driving out to Madison, like we did in 2001, but this year to attend Shayne's graduation ceremonies. Then we were all planning to tour the Wisconsin Dells before coming back home to start school. I'm so saddened for Shayne that he isn't able to graduate with his awesome class. And I pray that all of this will end soon, on a positive note, and Shayne will be able to go back to Madison to study and to graduate somehow. He worked so hard it's such a shame to have all of his hard work over the years suddenly disappear.

So it was pretty ironic on Monday at the hospital when the phone rang and it was Eric. He had some funny things to tell Shayne, but Shayne was chaperoning Shayla's preschool class on their field trip. I chatted with Eric a bit, while helping Christi put the finishing touches on the 23 page book she wrote for Shayla. (You thought I was wordy!!!! hee hee) Eric told me that one of the banking students showed him a 3 1/2 inch binder and when he asked what it was he was told it was every one of my journal entries printed out. Oh my! I guess Christi gets her length of writing naturally (hee hee).

Monday her blood counts remained terrific at: white-6.1 (normal), hbg-10.2 (barely low), and platelets-260 (normal). Her weight was up a bit to almost 49 pounds (22 kg). She is still looking very thin but it's hard to eat when you're on chemo and everything tastes different. Also, surgery followed by the complications really took a lot out of her and caused her to lose a lot of weight I believe.

On Tuesday, Lee K. from Songs of Love arranged to meet us at Ronald. We were thrilled to meet the songwriter and singer of the "Christi Thomas" song. What a blessing!! This sweet gentleman was a high school chemistry teacher and reminded me soooooooo much of an oea friend and high school chemistry teacher who I really admire (Bill N.) so it was like chatting with an old friend!! Lee is a fabulous, gentle, down-to-earth gentleman!!! Of course we talked "school" and I wasn't surprised to learn that he would write personalized songs for some of his students when they were down. What a gem!! Not only did Lee drive all the way in to this huge city to meet us, he brought a darling "Vermont Teddy Bear Company" teddy bear for Christi - complete with a little shirt which says "Christi's Crew" on it. I was floored. (Nearly speechless - if you can believe that!!!) It was absolutely unbelievable; I totally forgot that they did stuff like that and Shayne and I and Christi even toured their factory in 1997!! Wild! Christi really liked meeting Lee, hearing his low, low voice, that he knew so much about her and sang some lines from the song. It was very special!!! Thanks, Lee!!! Wonderful "Webby" put the special "Songs of Love" song on Christi's web site. (There is a click "here" to listen to the song on your computer if you would like to listen to it.) This is located in the "links" section of the web site that Eric has designed for Christi's journey.

On Wednesday, I pushed Shayla in her stroller to get her hair cut at a fancy-smancy salon between Madison Avenue and Fifth Avenue. (Yossi, a most awesome gentleman, from Hungry, has his salon (YOSSI) there and he gives free haircuts to the Ronald families. What a blessing when you don't have Tiffin's Cindy with you so far from home!!!! I had heard that it was $200.00 to get your hair cut there, but didn't really believe it until I read the sign when I walked in with Shayla yesterday.) Our thanks to the angel on earth Yossi and his tremendous and compassionate staff for making Shayla feel like a princess yesterday (and for letting us see her pretty blue eyes again!!). And I am so thankful that Cindy remains the great bargain for us in Ohio or I would probably be attempting to cut our family's hair!!!

On the way to the salon, the phone rang. It was Shayla's sweet friend Veronica asking if we could go to the Natural History Museum with her and her father again. Shayla and I were both thrilled!! We stopped by the hospital and then went to Veronica's apartment before riding the bus to the museum. We both had a most fabulous day: Shayla was able to be with her darling friend and I was able to talk with an adult and to be away from the "hospital scene" and all of the stress and heartache that accompanies it every day while Shayne tended to Christi getting her chemo infusion. That evening, Veronica and her beautiful mother came over to Ronald so that the girls could play together one last time for a while. So sweet. People are great! We've been so blessed, despite this curse of cancer.

As we're nearing the first anniversary of Christi's diagnosis (September) of course I'm filled with anger and disappointment, but that's not going to do any body any good. I continue to wonder each and every day WHY her, WHY her cells didn't respond and WHY they really haven't figured out a true cure for neuroblastoma. I'm so saddened and extremely disappointed that so much has been lost this year for all of us and taken away from her forever. I just want to get her better and get back home and go on as a normal family just trying to live each regular day. I truly don't know how much longer I can do this. We continue to try to make the best of things, but it is absolutely grueling to continually put on a smile and a bright attitude so that undue stress isn't experienced by the children. (As a kindergarten teacher I've always felt like this is one of my roles at school, but not 24/7 like I've now been doing for nearly 12 months.) It seems like every day is getting harder and harder to march on. I can't sleep and have bad dreams. My heart breaks for Shayla who I know is also experiencing an overwhelming amount of difficult feelings and uneasiness like the rest of the Thomas team lives each and every day. Life isn't easy to life when your kids are healthy and this style of living is far from healthy.

New in Christi's Clubhouse is the awesome, four year old Jake from North Carolina. Please keep this little sweetheart "The Jakester" and our neighbor for a while at Ronald, in your prayers. This trooper has endured five major surgeries and twenty - three rounds of chemotherapy. (Yes, I typed that correctly 23 rounds of chemo! ugh!) Our hearts just broke when we learned he was removed from the Beta-Glucan Phase One Study due to what was labeled "disease progression" and he has since started about the same chemo that Christi is on now. This disease is absolutely heart wrenching!

I hope I'm not speaking too soon, but we have been absolutely THRILLED that the "clearing of the throat" Christi had been doing continually since Labor Day ended after the surgery. While no doctor could ever figure this out, it appears to us that it must have been the nasty tumor. (Of course we'll totally freak out if she starts to do it again!!!!!) The day after Labor Day (before she was even diagnosed) I called her doctor to try to get her in after school because of it, but he was unable to see her. While I was on hold waiting to see if she could be seen by our doctor, I counted that she cleared her throat 27 times!!! During the diagnosis, we shared this information and a CT was done which showed nothing. None of the many doctors we've encountered in Ohio nor NYC even put any emphasis on it and we heard maybe it was a "habit" etc. We now believe this was a direct result of her tumor pressing against "something" causes this annoying situation to occur. How nice it is not to hear that annoying sound. (Annoying because we worried about what it was and the discomfort it was causing Christi, not because it bothered us. Shayne and I would give each other "that worried look" when she would do it.) It's been nice not doing that for the past few weeks! God is good!

Here's wishing you a fabulous weekend!! Make it a special one with your family and friends!! Enjoy!!!!

With great thanks and appreciation,

PS: Grandma Nee Nee called. She said, "The cat is getting fat!" Christi's thrilled!!!!

Christi's Joke: What are the four seasons? (salt, pepper, sugar and vinegar) Thanks, Vi!

What's Next? This sounds totally crazy, but perfectly normal for "The Thomas Team" - After today's chemo infusion ends we will drive down to Philadelphia. It should be about a 2-3 hour drive, depending on traffic. I surfed the Internet checking hotel rates. We will stay overnight at a hotel close to CHOP (Children's Hospital of Philadelphia) and may do some sightseeing - if Christi is feeling okay tonight after we check in. At 9:00 AM on Friday, we have a meeting to discuss their possible treatment options for Christi with Dr. Maris. As soon as we've completed the consultation, we will drive BACK to New York for Christi's tenth day of chemo. THEN we will drive the ten hour trip home to Ohio! She will have nearly a two week break before returning to start the second round of Irinotecan (and what will be her 9th round of chemo since diagnosis). We won't do any testing in between rounds this time since they want to try two rounds before saying it didn't work. Christi has planned what she would like to do on this break in treatment; however, a lot will depend on her blood counts and how she is feeling. Her blood counts will be checked in Ohio somewhere. Obviously, the side effects may prevent her from doing some of the things she is hopeful of doing. (Of course, checking to see if Buttercup had her kitties or not is her top priority!! She's already had two firm offers to buy them for a $1.00 each! Thanks to Aunt Marty and to a former SE Classmate of ours - Melissa I.) She's amazing! Selling her kittens on the Internet! (hee hee!) Take care! Thank you!