Journal Entry

Saturday, January 31, 2004

There is no education like adversity. (Benjamin Disraeli)

Hello to the great Christi Crew! THANK YOU for your continued love, prayers and support!!! You continue to keep us going! When I get down, I simply look at the counter and number of hits on Christi's web site and I immediately know that folks do care and are helping get us through this difficult time. It's very much appreciated! With great thanksgiving I report that Christi continues to be doing very well and currently remains pain free and happy. We praise and credit the Lord for that!!

Christi needed a blood transfusion last Thursday as her hemoglobin level was down to 7.7. Shayne told me that she fell asleep coming home from school on Wednesday. We knew a necessary transfusion was just around the cover as we could see her getting more and more pale, tired and cold with each passing day. Even when she was under many blankets, her back still felt cold when I would rub it. Again, the angels who work at the hospital performed their magic and we didn't have to leave this great part of the state to get some much needed new blood transfused into her body! (THANK YOU, Mercy Hospital of Tiffin!!!) I took her in to get her blood vial drawn early in the morning and then when I learned she needed a transfusion I asked her if she wanted to go home or to go to school until her blood was ready and she said, "They really cook good food at school. And Theresa and I are writing and illustrating a book at recess. I want to go to school." So just like she napped on the way to the hospital, she napped again on the way to school - a sign of needing whole red blood. A sweet, sweet volunteer drove to Toledo to get the blood for Christi - saving us a trip and allowing her to go to school. During the transfusion they treated her like a queen - she even ordered a grilled cheese sandwich and mashed potatoes and received it. I was able to catch up with a dear friend who is the nurse that arranged Christi's special food! (Thanks, Lezle!) Wow! First class service! Thanks, Mercy Hospital of Tiffin! Thanks, Blood Donors for literally saving my baby's life time and time again!! We've been so blessed!

Last Friday I needed to fly to Baltimore to attend a teachers' conference. Christi knew I had a plane to catch and I reassured her that I would be home from the conference on Sunday night and that Daddy would pick her up from school and take her to ballet. As I neared school, she said, "Just pull up Mommy. I'm going in alone." It cracked me up! I said, "Christi, you're six and the door is really heavy. Are you sure?" She told me that she was six AND A HALF and that she could do it. After a bit of a struggle with the door, she made it. (She's so independent!)

At the NEA conference I attended with 400 other teachers from the Mid-Atlantic states there were over 90 educators from Ohio. At the first meeting I attended with just the great Ohio group, I stood up to introduce myself and I found myself blurting out, "It is sooooooo good to see you!!!" before I could even state my name and school district. (It'd been about a year and a half since I'd seen many of those teachers and they burst into applause - totally catch me off guard. I had to look down until they stopped to keep from crying.) My association family has been so helpful and supportive throughout this battle - always advocating for teachers and the learners they serve, I shouldn't be surprised. I've been blessed! The conference sessions were fabulous, the speakers inspiring and the chance to catch up with my dear old friends from around the great Buckeye state was absolutely priceless and most refreshing. I'm so glad I went.

The girls got along great with just Daddy for the weekend and thanks to Grandma Nee Nee arriving (and staying and cooking and cleaning) they were in fabulous hands! (She was even here to babysit when Tim dropped by and ended up taking Shayne out! Thanks, Tim!) Saturday found Shayne taking the girls sledding at Heidelberg and sledding in Sycamore. (We've been so blessed to have Christi feeling so well and happy when sadly MANY of our friends are not in the same boat. This evil disease shows no mercy.)

After I arrived home on Sunday night we all went ice skating - a first time attempt for both of the girls in Fremont. (We did believe that Christi's platelets were going up so we "thought" it was okay even though my Mom really questioned me the next day after I told her what we did. I often struggle with - do you plan for a future, or prepare for a death? Nevertheless, we've decided to LIVE for the present making lots of memories and treasuring the fun times together.) Christi was so terrified she was shaking out on the rink in the beginning. After two minutes on the ice, she said with frustration, "I'm done. I'm just going to watch now." (Things come to her so easily that when she doesn't catch on right away she experiences tremendous frustration not knowing how to deal with that.) I was able to convince her to try a few things and pretty soon she was (slowly) skating all around the rink holding my hand. When the girls asked why Daddy wasn't even wearing skates he responded, "Not all of us were lucky enough to grow up with a pond in our back yard." Shayla was an old pro catching on so quickly and not caring at all if she fell down - which she did MANY times. Christi really wants to go back soon. I hope we can.

Due to a big snow / ice storm here in Northwestern Ohio, school was canceled on Monday, Tuesday and Wednesday and Thursday and Friday, yes ALL week. Christi wasn't too disappointed - until Thursday. At one point she said, "Would you just cuddle with me on the couch to help me get over the bad news about school being closed?" With a whole week off from school Christi worked on some Brownie Girl Scout badges that she missed when she was in Philadelphia and also try to catch up with her religion classes that were missed. She also put the final touches on her "Endangered Species" poster she made. She got the idea on her own and has the big idea that the teachers are all going to take turns hanging it in their classrooms for a few days so that all of the children can learn about how to save the animals. "Mrs. Smith's room first," she said. (Thankfully, Mrs. Smith agreed and even wants her to give a little talk to the fourth graders about it. She said, "I can do that," when she read Caroline's email.) She also created her valentines box while Shayla put together her treat bags to pass out at preschool for her "5" birthday in February and learned more about Ancient Egypt which continues to fascinate her. Below is what she rapidly dictated to me as I typed her presentation for her. This is what she is planning to read to the fourth graders on Monday. All I can say is, "She has guts!" I never would have been able to do stand up in front of kids 3-4 years older than myself and try to share something I found interesting with them! (Thanks to Mrs. Smith's class)

Hello! My name is Christi. I brought in this poster of endangered animals because we should help them. If a lot of endangered animals become extinct than we will die along with them. We use things from them too. To help out, I think we should eat less things from animals and use less things from animals. It should bring to your attention that there are so many of them. It may be because their food is getting low or their home is being destroyed or they are hunted. These are three good reasons for them to be endangered. So be careful for endangered animals.

On Monday night the girls also wanted to go sledding again so off we went. I can assure you it is NOTHING I will let the children do again in the near future!! I had NO IDEA it was so dangerous - even though I've heard about Tim and Todd and Shayne's sledding adventures as kids for years, I thought that contained a lot of exaggerations. Our sweet friends, Denise and Tim, brought dinner over while I was at my conference and this was included in the thank you email Shayne wrote them back explaining our sledding ordeal! (Mom, please do us both a favor and stop reading right now. Thanks!)

I took the girls sledding on Saturday. We hit two hills. We nicknamed the hill at the cemetery in Sycamore "Deadman's Hill". I figure it will sound more dangerous when they reflect back on it as adults. (Ya know how we talk about "Killer's Hill" in Republic). On Monday night they wanted to go again so I took them to Hedges Boyer Park. Angela went along. Of course each girl's first trip down the hill involved a spectacular crash. Angela was a little testy, but I assured her that there were no calamities on Saturday. Our evening on the slopes ended when I accidentally sent a belly flopped Shayla jetting down the hill toward a foot high jump built up in the snow. It had all the exhilaration of "Killer's Hill" with a lot more speed. She somehow hit the jump dead on and achieved a complete back layout flip. Her face broke her fall which generated horrified gasps from the large crowd. I remember from football that if you took a hit to the head the coaches would ask questions like, "What is your name, address etc." so to access her I ask what her address was and she said, "You silly, I didn't know my address before I landed on my head," I guess she will be OK.


Thankfully, she was even though I immediately started researching "head injuries" and Christi turned herself into Florence Nightingale tending to Shayla who watched a video on the couch.

Tuesday afternoon I was very nervous about driving with two girls on the ice and blowing snow so slowly we went to the hospital to get Christi's blood drawn from her arm. I was mortified when Christi said to the sweet woman preparing to draw her blood, "Could you hurry up there is a really good cartoon on that I'm not allowed to watch at home? I really want to see Powerpuff girls before it's over." Now I know they hustle Christi in there first and treat her like a queen and then she has the audacity to say, "Could you hurry up?" Oh my! I wanted to disappear. I finally managed to laugh and joke with the woman about competing with bad children's television programing. Anyway, her counts were: 11.6 Hgb. (yes! That blood transfusion certainly helped. Now we pray that she can hold on to it on her own. It's actually a normal level.) Platelets (58) no change, hmmmmmm. (normal 150-400) We have to wonder if we've now maxed out on what her platelets are going to be. The MIBG was a killer! The white count also remained unchanged at 2.4 with an ANC which fell by 50% down to 1,000. I wish I could detect some patterns here, but no one really knows what is going on nor what to make of it. We knew going into the MIBG that one of the reasons it was life threatening was that her blood counts could never recover so of course that thought exhists in the back of our minds while we hope and pray that's not the case. We will now get her blood counts checked just one time per week. YES! I like less time in the hospital!

After the blood draw, Shayne suggested that I take the girls to McDonald's new Play Place to give them some exercise before returning home - so I did. They had a "ball" playing together and they ate and ate and ate. What happened to the days when I'd order them a happy meal and just eat the left overs for my meal? hmmmmmm. I ordered a fish sandwich and Shayla even ate half of my sandwich too. I'm happy to have hungry growing girls I guess; I know many little ones that aren't able to eat at all!!! Thankfully, Christi has never once needed any tube feeding. We've been blessed!!

Friday I couldn't stand it any longer, I had to get out of here! Shayne watched the girls in the morning so I went to school and worked in my classroom for a few hours. AHHHHHHHH! Gail and Melody also braved the weather and were there working hard setting up the Book Fair. (Christi's going to be THRILLED about the book fair at her school next week!!) Once again I'm pleased that Christi is still feeling so well and the girls enjoyed another night of ballet lessons at Heidelberg College on Friday. Today I shall head back and get some more work done this afternoon. I have some fun and education lessons I teach about Groundhog's Day - which is Monday, so I need to finish my preparations for school.

On the medical front, this week Christi started a drug treatment called 13-cis-RETINOIC ACID, also know as CRA, or isotretinoin and commonly known as "Accutane" but we have the cheaper generic version called "Amnesteem". Because her blood counts are still so low she doesn't qualify for any other clinical studies at this time. (ugh!) (And for my sweet NB friends who've asked why we're not trying fenritinide first - another retinoic family drug, the fact is the trial is currently closed. Hopefully, soon it will open, but currently it's not even an option. I do agree that it would be better, but it's not possible right now.) We know what NOT treating will do so therefore we are doing this CRA attempt instead of doing nothing. The theory behind CRA is that it should mature the neuroblastoma cells. This is standard protocol for the end of treatment for all NB kids. We're far from the end of her treatment, but we hope that this helps to rid her of disease somehow. (We have to have hope so this is what we're clinging to now!) Dr. Suzi mailed the script in from Philadelphia here to Tiffin. The pharmacists called me on Monday to say that the fourteen day supply was ready, but also to warn me that it was very expensive and that the generic version we were getting was just under $800.00. (Actually, that sounded really inexpensive after some of the other things she's been through!) She takes two pills (80 mg) in the morning and four pills (70 mg.) at night and she will do this for fourteen days. Then she'll have fourteen days off and then will repeat the cycle again.

We plan to do this for two to three cycles (pending no pain and sign of progressive disease) and then we'll return to CHOP to retest and scan. Once her disease is evaluated, we'll establish a new plan of attack. Hopefully, over the next two to three months her blood counts will recover and she'll be able to participate in another clinical trial. (Or maybe her disease will just be GONE. Wouldn't that be great?!! Wishful thinking I guess, but we're asking God - the true healer!) While many, many NB parents say that this drug is called "Craputane" instead of Accutane because of how it affects the children's behavior and moods, we are all prepared for that. Some of these children have terrible tantrums, mood swings and uncontrollable outbursts. (like dealing with cancer treatment isn't enough!) I've warned the teachers at school and we will gladly keep her at home if this is a problem. Trust me, I know that a teacher can't teach if one child is out of control and it's not fair for the rest of the entire class who is there to learn. So we'll hope she does okay, but we're prepared to remove her if need be. This side effect should build up over the course of the 14 days, but so far so good. (Thank you, Lord!) "And the prayer offered in faith will make the sick person well; the Lord will raise him up." (James 5:15) We also need to watch for headaches - a sign of swelling in the brain. Her lips and skin should also dry and crack terribly (actually peeling off we've been warned) so I've been keeping her well coated with a variety of lotions, balms and ointments my dear NB friends have suggested to me that may help. So far (day #4 her cheeks are really dry, irritated and pink, but other than that all is well. After all she's endured, this should be a breeze! (Thanks to Beth W., Donna R. and Jodi G. for getting some "Mary Kay" help for Christi's skin and lips and for bringing it to us in the horrible weather!)

Christi happily brought home her grade card last Friday. I told Shayne that I was pleased she still had all A's despite the fact she's missed a ton of school. God has blessed her with a brilliant little mind. I'd hate to be dealing with educational problems on top of cancer like so many cancer families have to do. She really enjoys reading and being read to and recently we finished, "The Landry News" and are nearly finished with "Janitor's Boy" so we will have read all four of Andrew Clements series of school books. They are written about 5th - 6th grade students so she had a lot of questions. There's a lot to discuss as we go along. Definitely "teachable moments" and I love it. I was absolutely THRILLED this week when the wonderful, wonderful teacher Anne Marie called from NYC to check on Christi. It's hard to describe how much we ALL miss that fabulous, remarkable woman. Those were, without a doubt, Christi's best time in NYC working so hard for Anne Marie in the little (closet) classroom while Shayne and I got a break and an hour to ourselves. Christi loved learning all about science and social studies and math with Anne Marie who made learning so fascinating and fun every session!

Since I no longer have the girls' baby books up-to-date, nor have I done ANY scrap booking since right before Christi's 9/11/02 diagnosis, I'll list a few "Shayla" items here so I don't lose them. This is from one of her fabulous preschool teachers via email:

Wednesday Shayla told me she needed to get to New York quick so she could go to Central Park and find her imaginary friends she left there. They ran away from her there and she needs to go get them! What a hoot!

Today she brought her map of how to get to preschool from her house. It's very important to have this map because she loves preschool and couldn't wait to come here. Plus now she thinks she can walk home since she has this map! We will keep a close eye on her so she doesn't leave by herself!!!

She later was telling one of the kids that she is not ever going to New York again! I refuse to go she said. Poor Shayla. I forget how her life is not normal either.

No, Shayla's life is not normal, it seems EVERYTHING revolves around Christi and Christi's care. We do things all according to Christi's time frame and schedule. The other day she was playing so nicely by herself and wondered why she had to stop. When I said, "Because we have to get Christi's arm to the hospital so they can take the blood out of it," I thought this poor little thing probably wonders if we would do the same thing for her. And OF COURSE we would!!

She cracked me up the other day as she was eating a bowl of dried fruit. Here is our conversation: With disgust Shayla said, "Mommy! This fruit is all dried up!" Trying not to laugh, I respond, "Yes, Shayla. I bought it that way." Stunned she replied, "You did?" Thinking this was a hoot, I thought I'd push it. "Yes and I paid extra for it." With great shock she questioned me. "You paid extra? Why???????????"

Below is another poster Christi recently concocted by typing this all by herself on the computer and printing it out. She asked if we'd post the posters around town to get her business started. I stuck the fliers into Shayne's bag hoping she'd forget about this latest idea.

"Christi's Pet Business"

Christi’s Pet Business wants to watch your pets. Christi’s Pet Business will baby-sit your pet for up to seven days. We will feed and walk and follow the schedule. The price will be a quarter an inch (because the bigger it is the more trouble it could cause) and all money will be donated to the poor. The animals will have lots of love and attention from us. We are not allergic to any animals that we know of. Please make a schedule so we know what to do. It should list what they like to eat, what they don’t like and what they do like. If there are any requests, just tell us.

Here's wishing you all a fabulous weekend!!! Enjoy!!! Thanks for everything, my friends!!! A very special happy fifth birthday to Shayla's little NYC friend, Veronica!!!!

Love, Angela

Christi's Quote: "When I close my eyes and open my heart, I feel that God is near."

What's Next? We're still trying to live normal lives with school, work and activities. There were no Girl Scouts nor religion classes this week due to the poor weather. Treatment wise Christi will continue all through next week with these CRA drugs. We hope that this keeps her disease stable or even eliminates it and that the side effects will be manageable. She's been wanting to do something to help others, but that's kind of difficult to find something a six year old can actually do, but we think we're on to something now. (Hint: If you don't live too far away, get ready to sit down and roll up one sleeve. And Christi's counting on baking and serving you cookies.)

Our Prayer Request: Is for healing for all of the world's cancer children bravely fighting this horrible disease against insurmountable odds. Lord, hear our prayer.

My NWOEA work keeps me going outside of the classroom. In my last President's Column I wrote about the warning signs of childhood cancer - thinking that our newsletter is mailed to our over 10,000 wonderful members who are in contact with thousands and thousands of children in Ohio. As always, I hope I can help to make a difference in a child's life. If interested, please take a moment to read my article. Thank you!

Message from NWOEA President Angela:

When I sit down to write the NWOEA newsletter columns, I reflect upon the unique educational items and experiences I've come across since writing the last column and try to determine what would most significantly impact our great members and the learners that they serve. Today, I'm typing from yet another Ronald McDonald House - this time in Philadelphia where we continue to fight for our six year old daughter's life as she participates in yet another Phase I experimental trial battling what has been now labeled a terminal cancer with no known cure. Reflecting back to wonderful Northwestern Ohio - home of the world's greatest teachers, I am reminded of the profound effect our members can all make by recognizing cancer possibly thriving and growing inside of our beloved students.

For many cancers, early detection can make the difference between life and death. Unfortunately, for our daughter, her cancer was not identified until it has spread throughout her entire body. While she had none of the common signs of childhood cancer, I want to use this forum of over 10,000 fabulous members to educate those who have dedicated their lives to advocating for children with the chance that one of you may help a child obtain a better prognosis by helping to make an early identification of cancer - the number one disease killer of children.

Rates of childhood cancer are increasing each year. Currently, 1 out of every 330 kids will be diagnosed with cancer before the age of 21. However, no one knows how or why children get cancer. Parents should be alerted and advised to get further medical testing if their child has any unusual signs or symptoms that persist. These include: an unusual mass or swelling; unexplained paleness and loss of energy; tendency to bruise; a persistent, localized pain or limping; unexplained fever or illness; frequent headaches, vision changes; and or weight loss.

Each day this fall that I stood outside on our wonderful school's playground serving on "recess duty", I would watch the children play and wonder, "Who's next?". Statistics told me that a child attending our school would be diagnosed with cancer in the near future. "How can I help to identify that child earlier in hopes of making a difference?" was something I always asked myself and I will continue to do so when I return back to teaching in January. I hope that you'll make yourself aware and familiar with the "Signs of Childhood Cancer" I've listed above and stand up for the beautiful children you serve who often have no advocate without you fighting for them! Thank you for all that you do each day in your work for our young people! Here's wishing you and yours a happy and healthy 2004!!