Journal Entry

Sunday, March 21, 2004

Every two seconds in this country,
someone needs a blood transfusion.

(source: American Red Cross)

Dear Christi Fans,

Hello! Happy Spring! Christi stayed up until midnight last night so that she could enjoy the first minute of spring. We are very excited about the Bloodmobile coming to Tiffin on Friday. We hope that some of the Christi Crew will be able to join us there! Thomas Team thanks for the tremendous hard work of the American Red Cross and blood donors world wide!

As I walked out of class and across campus with my awesome OSU Professor last Wednesday night after our final class together for the quarter, she was so kind in saying good bye and wishing me well with Christi. With tears in her eyes, this incredibly sweet woman told me that it may be difficult to understand, but God's home is a far better place than we can possibly imagine here - even though childhood cancer seems senseless. Because of the fact that I hold this wonderful lady in such high regard, I really took her words to heart and I of course applied it to Christi. Well, when I arrived home very late Wednesday night from Columbus (Shayne's Mother's plane back from Phoenix was delayed and I was waiting to drive her home) my Professor's words immediately came rushing back to me. I sensed something was wrong with Shayne as soon as I walked in the door. Soon he told me that our little friends Robyn and Cierra both died that day within hours of each other. With numbness taking over my body and with tears pouring down my cheeks, I reflected back to my conversation just hours earlier on campus to try to make some sense out of this devastating news. While I convinced myself that these awesome seven and eight year old girls really have "won" as Vicki and I had talked about after class, I still cried myself to sleep mourning this tremendous loss of life and praying for strength for their dear, dear parents left here on earth to suffer and to try to put their lives back together without their precious children. I just can't fathom their terrible pain. It is now days later Shayne and I are still very upset and very sad as these two fine young woman held such a special place in our hearts. I just want to scream, "Why? Why? WHY????!!!"

Both of these Angels are, without a doubt, sporting the most stylish, lovely, glittery and happening Angel wings in heaven!! If you'd like to send a message of condolence their web sites are in Christi's Clubhouse. We met the wonderful Brooks family as soon as we arrived in NYC. I can't think of more loving and devoted parents anywhere. They literally gave up EVERYTHING in a concerted effort to save Robyn's life. They left their jobs, their home, their family, their friends and even their country to move to America to treat their precious child, Robyn for the past two years. The last time we saw Robyn was when we left New York and she was NED. She was going to school and Girl Scouts. Things were looking so bright! This disease is so tricky and wicked. It can't be trusted! I hate this evil beast! It strikes back with such a vengeance on our little loved ones, they just don't stand a fighting chance. I'm absolutely sick! Never did I really believe that Karen and Garry would fly home without their princess. Our prayers will continue for our beautiful friends from England who have been through hell and back.

And I try to find comfort in knowing that "Heaven's New Angel" - Cierra, is no longer in pain. Every time I saw Cierra while we were at CHOP she was curled up in such pain and she wouldn't permit her Mother to leave her sight - period! My heart would break for her incredible, loving Mother; yet, it is only now I fully realize that THIS new pain and torture Shannon feels must be even worse than when Cierra was hurting and she felt so helpless. My hat goes off to dear, sweet, Single Mommy Shannon who also gave up everything for this child. I can't even imagine how difficult each breath must be to take without her precious baby by her side. Weeks earlier when Shannon had sent an email in desperation of how she was feeling, Shayne responded back that he's observed her in action and if he was ever in need of medical care there would be no one else he would want in charge of making his decisions - but her. I couldn't agree more. I'd trust my life and all those tough decisions with this bright gal too! This beautiful woman is absolutely amazing. Our prayers shall continue and we ask you to please do the same for these two incredible families as well for the family of a beautiful teenager from Liverpool - Michelle, who also entered Heaven's gates within hours of Cierra and Robyn's death due to this monster of a cancer called neuroblastoma. May God be with our friends. This is a terribly difficult time for us filled with tremendous sorrow, loss and sadness.

Last Thursday, the 18th, I took Christi to a morning appointment at the hospital to check her blood counts through her port before taking her to school. Her port, inserted under her skin in her chest, had not been accessed for a month. It's less traumatic for Christi to have blood drawn from her arm instead of her port so I was quite worried that maybe it had clotted or something during the past 30 days. Rest assured, it is fine! Ahhhhhhhhhh! YES! This time, her blood counts were okay. Not what I was praying for, but okay. Hemoglobin down to 10.8. White down to 2.3. Platelets down to 94 with an ANC of 1,000. Definitely not the best report I've ever seen. Definitely an area of concern for us.

We have come up with three possible reasons for the declines. It may indicate that the disease is starting to take up a lot more space in her marrow. Her current treatment (13-cis-retonic acid) may be adversely affecting her counts - even though most oncologists will say that blood counts are not lowered with these drugs-it still can happen. Shayne's theory was that because it was drawn from her port instead of her arm it was enough to throw off the counts. A draw from the port involves flushing and heparin and could give a skewed reading. After reviewing my records of past port draws compared to arm vials drawn, that's not the pattern. Oh my. I guess in an effort to be positive, it is nice to know that at least she's above transfusion levels. (Praise God!) When Shayne met with Dr. Jasty last week, she agreed to only having Christi's blood counts checked once per month since it appeared she had stabilized. Once a month would work for me!! More time left in our week and more money left in our pocket not to mention the obvious thrill of no more needles being pierced into Christi's arm; however, I don't want to do something dangerous. Our hope is that this is temporary and doesn't disqualify her from another trial; her platelets are really low at 94. Some "interesting" therapies we may pursue require a platelet count of 100. hmmmmm.

Friday night found us in Columbus. While in a teachers meeting, I received a call. I assumed it was Shayne back at the hotel calling with a minor problem. What a surprise to hear from ANGEL FLIGHT!!!!!!!!!! The same sweet pilot that had planned to fly Christi and I to Pennsylvania before our schedule changed was calling to set up our flight on April 6th. PRAISE GOD!!!!!!!!!! He kindly asked when we wanted to leave and I told him that we would leave whenever he told us and that we were at his beck and call and most thankful. I also told him if it really didn't matter to him Christi hates to miss school and she would love to go the whole day on Tuesday and leave after school if at all possible. He said that was fine with him. (What a Saint!) Therefore, Christi and I shall arrive in Philly about 7:30PM on Tuesday, April 6th. Her first appointment isn't until noon on Wednesday so that works out perfectly. We shall use the shuttle van system at the Ronald McDonald House to get over to the hospital and back. What a blessing! THANK YOU, ANGEL FLIGHT!!!! (True angels on earth with wings - airplane wings that is!!) We are all set - now we just need to get good test/scan reports back! (Smile.)

On Saturday, I went to a teachers meeting. Shayne took the girls to COSI where they hooked up with the zany explores from the "Valley of the Unknown". (awesome COSI staff members Jenn and Tracy) The Thomas Team reported that they had the usual amount of good fun and camaraderie. It was an added bonus that they were able to meet and spend time with Jenn's sister from Pittsburgh. Shayne joked that they brought her along so he would have someone to talk with while the girls went on their usual adventures with the explorers. Shayla being her actively social self managed to find someone she knew from school while at COSI. There had been an worsening cough that pursued Christi all week. On Saturday, in Shayne's view, the cough worsened. Her energy level was fine and no fever or other symptoms. When I called to check in on the gang, Shayne let me know his concern and we made plans that he'd pick me up after my meeting and we'd take her to Children's Hospital while we were in Columbus to get her checked out. (Frankly, her low blood counts from Thursday had us both freaked out and the fact that her cough was getting worse was really frightening.) Since it is always challenging to get the girls to leave COSI Shayne did not reveal the plan to Christi until we pulled up to the ER. We spent a few hours in the ER at Children's in Columbus. Her blood counts were nearly identical to Thursdays - with the exception of an improved white count (up to 3.9) which increased her ANC to 2,457. Her hgb. remained low at 10.4 as well as her platelets at 98. We just don't know what this means, but the chest Xray came back clear and we were thrilled to learn that.

We'd like to use this forum to ask all of Christi's Supporters, who don't live too far away, to please consider joining Christi and Shayne this Friday in Tiffin at the Community Hospice Center located at 181 West Perry Street (close to the library) for the blood drive we're helping with. While walk-ins will be accepted, it's best to call Hospice to make an appointment during the 10:00 AM to 3:00 PM blood drive. 419-447-4040 or toll free at 1-800-834-8100. (Christi will arrive about 11:00 AM and will be ready to tell jokes or to read books to any grown up who needs a little bit of comfort. She knows how hard others have tried to distract her from the countless needles that have been poked into her over the past 19 months and she's willing to try these same tricks to help you! The six and a half year old artist will even sketch your experience if you ask!

Before my daughter's cancer diagnosis, I thought blood donations went primarily for accident victims. When I learned that diseases are what really goes through the blood supply rapidly, I was quite surprised. For those who do take the time to donate blood this Friday, you will most likely have to juggle a work or errand schedule, but making that work somehow will mean a world of difference to blood recipients and their families.

Christi would have lost her life countless times if it weren't for blood donors literally saving hers over and over. (Christi has had roughly 40 transfusions during her 19 month battle with cancer.) Every single time Christi has needed a blood transfusion, I have prayed for the anonymous donor. Seeing that bag hanging from her IV pole and reading the words on the sticker, "Volunteer Donor" is incredibly humbling and has often brought tears to my eyes - knowing fully that some angel on earth did not have the time to go donate blood for my daughter, yet by their doing so they've given me another day, another week, another month with my precious baby girl. I can't think of a bigger blessing. Thank you Blood Donors!

The requirements to donate blood are as follows: you must be healthy, be at least 17 years old, weigh at least 110 pounds, and not have donated blood in the last 56 days. You are required to show ID - except high school students may have their identity confirmed by a school official. Each donor receives a brief examination during which temperature, pulse, blood pressure and blood count are measured. (I can't help but think of one of Christi's Prayer Warriors from a far away state who went to donate blood in honor of Christi and it was then when her blood counts came back "out of whack" that her own cancer was identified - and identified early - praise God!! Thankfully, this young woman is now doing well!!!! She claims Christi saved her life! So, think of it as a free medical check up that might even save YOUR life too.

Top Ten Reasons To Give Blood:

10. You will get free juice and cookies.

9. You will weigh less - one pint less when you leave than when you came in.

8. It's easy and convenient - it only takes about an hour and you can make the donation at a donor center, or at one of the many Red Cross mobile blood drives.

7. It's something you can spare - most people have blood to spare... yet, there is still not enough to go around.

6. Nobody can ask you to do any heavy lifting as long as you have the bandage on. You can wear it for as long as you like. It's your badge of honor.

5. You will walk a little taller afterwards - you will feel good about yourself.

4. You will be helping to ensure that blood is there when you or someone close to you may need it. Most people don't think they'll ever need blood, but many do.

3. It's something you can do on equal footing with the rich and famous - blood is something money can't buy. Only something one person can give to another.

2. You will be someone's hero - you may give a newborn, a child, a mother or a father, a brother, or a sister another chance at life. In fact, you may help save up to three lives with just one donation.

1. It's the right thing to do.

Thanks for letting me bombard you great folks with great facts about donating the gift of life!!

With love, thanks and gratitude,

Angela and the Thomas Team

Christi's Joke: What has a room, but not a door? (A mushroom)

What's Next? Christi's third round of the 13-cis-retnoic acid (CRA) drugs will start tomorrow and will run for two weeks. Her skin and lips have just about healed up now from the second round. We pray this is getting her NED.

Join Christi and Shayne as they team up with the American Red Cross and the Community Hospice Care on Friday, March 26th from 10:00 - 3:00 PM. The bloodmobile will be at 181 W. Perry Street, Tiffin, Ohio. Walk-ins are welcome, but it's best to make an appointment ahead of time. Call Hospice at 419-447-4040 or toll free at 1-800-834-8100. Thanks and may God bless you richly!

This is the letter Christi typed for Eric and Alicia's Dog:

Dear Allie, I got a new pastel kit! When I did the dog I thot of you. So I toke a picture of it and sent it to you.I know how to write cursive now.And I know some Braille to! My favorite special is art. Once in art when we we drew with pastels aliens/monsters (I was drawing a alien) When I was adding the finishing touches everyone was washing ther hands or getting more water for their paint brushes when they started crowding around me. I said "what did I do?" they really liked my art and said nice things. In that is why I like art it is my best subject.

Love, Christi

P.S. There are other that I want to show you