Christi, you're my special friend.
(“Erine” by Lori Grine)
I wasn’t able to get them a room at the Philadelphia Ronald McDonald House so PRMH referred me to a hotel downtown that had availability. The usual Sheraton just a few blocks away was full. Shayne picked up Christi a few minutes early from school on Monday and after many lengthy goodbyes with sweet school folks they took off about . After school I dropped Shayla off at my wonderful cousin, Tricia’s home and drove to my OSU class. This is yet another reading class and this Professor appears to also be a wealth of knowledge so I’m certain I’ll learn a great deal over the course of the quarter. When picking up Shayla after class, Tricia told me, “I think she’s having Shayne withdraw.” While Tricia didn’t know this, Shayla became quite anxious on Sunday night after she asked me how long Daddy and Christi would be gone. I told her that we hoped and would pray for just a few days, but that it could be much longer. I could see the terror set in her little eyes. She immediately set to work creating a special care package complete with love letters written in their “sister code” for her big sister to take with her to the city. It was absolutely precious. The following is an email I received from Shayne on Tuesday morning; they arrived about :
What a wonderful entry into this fine city. Boathouse row was lit as if welcoming us. Just above was the magnificent art museum. I turned down
All our love,
I was relieved all appeared to be going well; however, that only lasted until I called Shayne later on Tuesday morning and learned that ever since had been having nasty diarrhea and vomiting. Remembering a nearly identical case about a year ago, I wrote it off to “nerves”.
Later Tuesday morning, Shayne sent me a text message:
“We’re homeless. No room at the Ronald House and the hotel is full tonight. We had to check out.”
I called Shayne at lunch and learned that they did end up getting a room at Ronald for Tuesday night after all. Whew! I said a quick prayer of thanksgiving. After checking into Ronald Tuesday night, she had an enjoyable time pouring the pop tabs into the big container. (THANK YOU, EVERYONE!)
While Shayne had given me the (excellent, yet strangely unique and very puzzling) blood counts earlier, the LDH level was not yet ready and he told me that he could wait until Wednesday. Well, he’s a very patient man, but I’m not - so I called CHOP to get it. After being put on hold with my stress level increasing and my heart pounding so hard I could feel it, the nurse finally came on the phone with the LDH results. Fighting back tears after discussing Christi’s vomiting and diarrhea I cried to her, “I just wish I were there too! I’d feel better!!” She said, “Well, I have news that should make you feel much better; her LDH is normal.” Yahoo! I literally floated the rest of Tuesday night. (LDH 713, normal 450-750. Praise God!!!!!!) Her blood counts were amazing, yet puzzling at: 13.3 hgb, 171 platelets, 6.1 white with an ANC of 3,977. While I thought it was very impressive CBC report, I soon learned that the awesome blood counts were because of the dehydration from the vomiting and diarrhea; I knew they were just too good! Oh, well.
Tuesday night I received this email from Shayne:
So I decided that Christi should not lose her third meal. I knew that her stomach was too weak to even make it out of the parking garage so instead I loaded her up in her stroller and took a nice long afternoon stroll. It seemed to please her that she was back in her stroller. We happened on a wonderful used book shop on the corner of Spruce and 39th. She (and I) loved it. She found a youth section located next to the political theory section a perfect fit! We shared a special afternoon browsing our respective sections of the shop. She bought two Animorph books for four dollars and read them all the way to the Ronald House. We checked into our room. It’s a “hobo room” but she liked it well enough. We are now at the incredible U Penn bookstore browsing.
I tried not to get too excited about the LDH level as I knew the “test of all tests” was coming up on Wednesday morning the MIBG scan. Needless to say however, I slept pretty well cuddled up with Shayla Tuesday night. Every time I woke up, I’d think of the good news of the LDH level and thank the dear Lord above hopeful Wednesday’s MIBG would also bring good news of stable or decreased disease!
Wednesday’s MIBG scan arrived. Shayne text messaged me:
Looks the same, but I’m bad at this.
While my heart paused and I was disappointed, I still gave thanks that Shayne didn’t see anything new. Another text message arrived about an hour later.
Dr. Maris said scan is clean, except a rib.
WHOA!!!!!!!!!!!!!!!! Now that is noteworthy news!!!!!!!!!!!! Talk about thrilled, I again floated the rest of the day!! “Through Jesus, therefore, let us continually offer to God a sacrifice of praise - the fruit of lips that confess his name. And do not forget to do good and to share with others, for with such sacrifices God is pleased." (Hebrews 13:15-16)
I called Shayne at my lunch break to learn what had transpired. With thanks to the dear Christi Crew Prayer Warriors, I report that the new areas of disease that showed up throughout her entire skeletal system six weeks ago in mid-August (entire skull, arm, ribs, femurs, sternum, etc.) have now regressed except for the one spot in the rib which was there shiny brightly on her July 1st scan. While this chemo combination isn’t a cure and will not hold back this relentless disease, we are looking at it as a “bridge” to her next treatment attempt. Dr. Maris said the response was remarkable and he cannot see any reason not to continue with the same chemos for two more rounds and then to return in early-November, despite the fact Shayne asked if she could please have 14 days off of the chemo instead of just 7 since it’s hard on her and she doesn’t feel the best. Dr. Maris believes if it’s working, we should stick with it; he doesn’t want to try to adjust the schedule. He shared the fact that her cancer will again break through at some point; it’s a matter of time. The one rib spot that is still lighting up is the same spot that first faintly appeared in April 05 and then appeared brightly on the July 05 scan; however, all of the other areas receded with the two rounds of chemo administered over the past two weeks. We were all pleasantly shocked! Praise God!! "Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." (Philippians 3:15)
Christi was in on the meeting per her request. I understand she said, “I’m not going to take it anymore.” Dr. Maris and Dr. Mosse both told her how well it has worked then she said, “OK, I’ll take it.” (Thank you, dear Lord!) Regarding the diarrhea, Dr. Maris said that was due to the fact that we discontinued her one antibiotic. Shayne and I felt why keep pushing meds through her body if she wasn’t on the chemo and may not be going back on it. Well, needless to say, she’s back on it now and it shall continue on. The diarrhea can be horrible with the irino which is why she must take this every day. (Oops, so sorry, dear Christi!)
So after hours of waiting for the irino and for her flu shot Dr. Maris wanted her to have, they went back to Ronald to check out. Bound for home about , Christi soon fell asleep while Shayne drove home through the night arriving back at . I was thrilled to see Christi sleeping soundly back in her own home and to watch Shayne unload the van after driving all through the night to safely bring them home. (Isn’t Shayne absolutely amazing? Oh, how I love him so!!) Three hours later, Christi was back at school.
Speaking of amazing, Shayne received some incredibly exciting news last June. Weeks earlier he had applied to run in the New York City Marathon. We knew the odds weren’t in his favor, but because it’s something he’s always wanted to do and because the 17th mile is run past Memorial Sloan Kettering Cancer Center he’s been talking about running this since our time spent in treatment at the great MSKCC (Dec. 02 August 03). Ironically, within 20 minutes of receiving the email which sadly notified us of Jay Barnett’s death, Shayne received another email stating that he qualified for the NYC marathon! He decided right then that he was going to train for the NYC marathon and run it in Jay’s honor. (We first met Jay and his wonderful mother in December of 2002 - soon after Christi’s treatments started at MSKCC. Shayne was really taken by Jay and loved spending time with this special teen! Jay was always interested in Shayne’s exercise programs.)
“Fred’s Team” raising money for pediatric cancer research at MSKCC:
This year, Shayne's running the NYC Marathon with Fred's Team to support "The Aubrey Fund for Pediatric Cancer Research" at
Shayne's asking for your help. He needs to raise $2,000 to be a member of “Fred’s Team”. If you can, please support him as a "Fred's Team Member" by making a small donation to his effort to run the 26 mile race in New York City where the 17th mile will be run past the great MSKCC - the hospital where not so long ago he pushed his daughter's stroller nearly every day. MSKCC is working hard to make miracles happen for precious children with a whole lot of "racing" yet to do. Thank you!
So by now, Saturday, Christi has completed three days of the chemo. It is tough to take. She has a hard time drinking the horrible tasting liquid and she nearly looses her cookies at many times. Friday after school she hit the couch and barely left it. Despite it all, I know she could still be in
With gratitude, peace and thanksgiving,
Funny story told by Shayne to Liz Scott (Alex’s Mom):
Dear Liz, Christi has been a bit disappointed with our choice of chemo-oral Irino. She could not wait to get to CHOP to talk to Dr. Maris about switching to something else. The first Doc she saw was Dr. Mosse. Christi asked her if they made the Irino with money from the Lemonade stand. Dr. Mosse explained that the drug had been around for a while given by IV and recently they found out that it’s more effective when taken orally. Christi said nothing in reply. Later she informed me that if they had made the irino from Lemonade Stand money she was going to stop having lemonade stands. “They really need to get that chemo in a pill,” she said. Thanks for your hard work for these kids, Liz! Love, Shayne
What’s next? So she’s home, home for six more weeks and I couldn’t be any more thrilled! The 3rd round of the temador, cebrex, irino started Thursday and she will take it every day for 14 days, get 7 days off and then repeat it for a second cycle. Upon its completion she’ll return to CHOP for repeated tests/scans in early November. The results will determine the next plan of attack. We are eyeing an new experimental antibody study hopefully opening in January. (It’s the same study we were told would open in the fall of 2003, but it appears things are finally moving along better now. While hopeful this will open at CHOP, we’re willing to travel to yet another hospital where it will most likely open first. Time is not on our side.)
“Make Your Mummy Proud this Halloween: Give Blood!”
Christi Thomas Honorary
(419) 447-4040 to schedule an appointment
While walk-ins will be welcome, appointments can be made in advance by calling Becky Shank at 419-447-4040. Christi will be on hand to help calm any squeamish donors from approximately . She considers those who “get pokes, but don’t have to” the brave heroes. Please consider donating the priceless gift of life if you can. Cancer patients everywhere will thank you! (I still remember Christi’s very first blood transfusion and have the mental image of the “Volunteer Donor” sticker on the blood bag engrained in my mind. I cried with gratitude, and prayed and thanked that selfless person over and over for saving my little five year old’s life.)
The girls needed to send in their favorite recipes for Girl Scouts. I thought I’d put them here to look back at one day and also perhaps a prayer warrior from another part of the country may not have heard of these recipes before. Christi & Shayla both immediately said their favorite recipes without any hesitation when I asked. Christi “No Bake Cookies” and Shayla “Buckeyes”. I must admit, I love them both too! (And I’m wondering if the cookbook will be solely dessert entries as they’re being submitted by the little girls. Hee hee) Here are the recipes (they’re easy to make) for any interested party:
Age 8, CHRISTI: CHOCOLATE NO BAKE OATMEAL COOKIES
Age 6, SHAYLA: CANDY BUCKEYES
Reflections from the sweet ‘Berg students to their Professor:
Wow...Christi is the most amazing little girl I've ever met...I was VERY close to losing it and crying when she read the book to us. What a sweetheart! I've never been so humbled and so awed by such courage and enthusiasm and positive energy. I've often had trouble seeing the positive side of things. I have a bad habit of falling into excessive sadness when I can't find a silver lining in something. Today, I feel like I was almost put to shame by Christi's bravery and care and compassion for her fellow human beings in need. I woke up this morning very upset and depressed about Christi and the hurricane issues and a whole bunch of other things. I came home this evening much renewed and oriented in a much more positive direction. Most of my change of heart from the day is due to being with Christi for a mere hour this morning. Just amazing... Her parents are so nice, her sister is adorable, and she is just a regular girl who has been dealt the worst hand of cards to play with...We already know that she has helped SO many people, as well as honored Alex with her lemonade stands. Her short life has already held more meaning and purpose than some people ever achieve in decades. I only hope for a miracle so she can continue to show the rest of us what being human really means.
All I can say is WOW. What an amazing little girl. I have never seen so many people come out and support a cause like that. It made me realize that there are so many children in the world that need our help. Having the lemonade stand could have been the help that just one child could have needed. I just wish there were more people out there that would help these children and doctors find a cure. I was so impressed that we were able to put together this lemonade stand together in a couple weeks. It really made me see that if people feel the same way about a cause that they can get anything done. I hope the lemonade stand continues in this class because it is a great way for people to learn how important it is to help children and how such an amazing child Christi is.
I feel so lucky to be able to take part in such an incredible experience. Christi’s story breaks my heart and I want to be able to do anything that I can to help and her family gets through this very difficult time. They are all such wonderful people with positive attitudes. I feel that our class did an amazing job putting the lemonade stand together so quickly. By doing the lemonade stand I have learned a lot that I will be able to refer back to when I am planning an event in my classroom. When we went around town ordering the t-shirts and bracelet it felt so good to hear that Christi is known by the community and that they all support her. I am glad that I had the opportunity to spread the word to others about her amazing story. I also loved the fact the channel 24 did so much coverage on this event. I had many people comment to me that it was nice to see a good story on the news. The part that broke my heart the most from the entire event was when her mom saw her name badge (Official ‘Berg Student) and said, “Christi your dream came true.” I loved seeing how happy her and her mom were from just that one simple thing. Watching Christi pouring the lemonade and seeing the smile on her face made me realize that there was a little something that I could do to make her and her family happy. I wish Christi and her family the best when going to CHOP next week.
Friday was a day filled with many emotions. It was amazing how strong and energetic Christi is. If I were walking down the street I would have never guessed that she is sick. She is such an outgoing little girl. The other thing that was amazing to me was the support from the Heidelberg Community. I know how it is to be a student and have no money and the students that came over weren’t just giving change, they were giving $5’s and $10’s. I also, think it takes a lot for Christi’s mom and dad to get all of this support from the community and then take none of it for their own funds (i.e. medical expenses, travel expenses, etc.). I give them so much credit for being so amazing and teaching their children the many lessons involved with donating that money to cancer research. You see all of these fundraisers by the family and none of their fundraisers are for themselves. That is awesome!
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Shayne & Angela Thomas: firstname.lastname@example.org