Journal Entry

Monday morning, August 2, 2004

pretty flowers
bursting, growing, coloring
thankful for flower buds

written by Christi S. Thomas on 7/29/04
seven years old

Whoa! Did I just write August? Unbelievable! And did Christi just write a cinqauain? Unbelievable! (While reading a new book Chemo Angel Peggy B. mailed to her "Junie B., First Grader Cheater Pants" by Barbara Park, this type of poetry was discussed. The next thing we knew she jumped up, ran to her room and came back into our bedroom where we were all four reading together on top of the bed and she started asking for clarification on the rules for this type of poetry. Soon she wrote the above poem and for the next few nights many more followed.)

I hope this finds you and yours well!! Thanks for checking in! Christi is doing fine, but we are very, very, very saddened by this beast called neuroblastoma hurting so many of our closest friends in recent days. It's been a very difficult week emotionally.

Christi's incredible oncologist, CHOP's Dr. Maris, responded nearly immediately with his thoughts regarding whether or not to pursue a vaccine trial at Baylor as well as his thoughts on adding Zometra. He's amazing! And it was fantastic to learn that while Christi is at CHOP this week, they will draw the additional six teaspoons of her blood to send to Houston to get started on this new possibility. Yahoo! Dr. Maris has already taken care of all of the paper work. (Once again another benefit of having a - if not "the", leading oncologist of neuroblastoma on your side. We had known before that they have even enrolled Christi on waiting lists for other clinical studies "just in case" whatever she is on hasn't worked out then she'd not be stuck on a waiting list with progressive disease, but instead be all ready to go for some new study. Dr. Maris' recent efforts just reminded us that he is still "on the ball" which is a tremendous blessing and reassurance that we are in good hands. Thanks, Dr. Maris - a gift from the Lord!!)

He also said that he doesn't think too much about adding yet another investigational drug (Zometra) to the current ABT as too many unknown drugs may cause her harm; we don't even know yet what this ABT is really doing to her! And we didn't realize that we didn't need to actually travel to Houston - until (hopefully not "if") they can scientifically grow some of Christi's "T" cells in the lab. They can get started with just six teaspoons of her blood they'll take and ship this week. If they're successful in growing T cells, it should be some very short trips back and forth just to get the injections. (And to get some of Joe's Mexican food - Angie, did you say it is Mexican food that Joe can cook? Anyway, whatever it is, we'd love to try some and to see you and since I took Spanish with Joe, we should try to talk in Spanish too - hee hee!!)

We had a nice quiet (well, as quiet as this family can be) week here at home last week. Many days and nights were spent getting my classroom ready for school - both with the girls' "help" and alone. We also went to the county fair, went swimming, bought the girls supplies for school and did more bike riding, praying, playing chess, reading and other "normal" stuff. God is good!

Friday's blood counts at the hospital were drawn from her mediport in her chest which needs to be done every 30 days to make sure it's not clotted. (It's not, thanks God!) She did vomit before we left the hospital, but nothing more than that. She hates when the use a lot of sailine to flush her port; it always makes her queasy. Shayla politely stood outside the bathroom door and waited until Christi and I were finished. (Shayla - you are so amazing and so lovable! I'm sorry we have to do all of this for your big sissy! I know it's terribly unfair to you and yet you are always such a good sport about all of this extra hassle we have to do for Christi. You absolutely love, adore and practically worship your big sister. We love you, honey!) Christi's counts were all down a bit, but that was to be expected after reflecting back on her patterns of this ABT. 2.8 white, 10.3 hgb., 96 platelets, 1300 ANC. I'm happy with her blood counts!

Saturday was the "Just for Kids" Poker Run. What a lovely, lovely event! There were 145 motorcycles registered. Christi and Shayla donned motorcycle helmets and goggles and were put into a Harley Davidson motorcycle with a side - car. It was just precious! They followed behind the Tiffin Police Department car - complete with lights, and lead the parade all the way through downtown Tiffin. They both LOVED, LOVED, LOVED that! I stood on the corner (with my camera of course) and tried to wave a "thank you" to all of the sweet bikers as they took off, but I didn't take many pictures and I was speechless as the tears were streaming down my face - totally uncontrollable. It was the most beautiful and moving feeling to witness so much love right there before my eyes. Then Shayne and I hopped in the van and tried to catch them so that we could take some pictures of the girls leading the parade, but we couldn't catch them no matter how many side streets we turned down; the "parade" of motorcycles was just too long. After the first stop, we drove ahead so that the girls could see all of the motorcycles riding on to the next stop in the poker run. Christi was standing there and saying, "thank you" while waving as the bikers drove by - many beeping or waving, again tears poured down my face recognizing so many I knew and so many I didn't while Christi just found it "cool" to count the bikes as they whizzed past. It was a great day and so awesome to catch up with so many friends and prayer warriors, some of our co-workers and parents of my former students and cheerleaders, old friends from SE high school days - we couldn't believe all of the sweet folks who came out. Wow! What a joy God's people are! Thank you to Smitty's and everyone involved!! We know you worked so hard and we thank you. "Just for Kids" is a GREAT cause - helping kids from Tiffin & Seneca County!

Yesterday, friends of ours treated our family to the Toledo Mud Hens baseball game since they weren't using their season tickets. The weather was gorgeous - hot and sunny. After the girls had had enough of the game we went to the air conditioned and awesome Toledo Museum of Art. We knew it was Sunday - so the Family Center was open. (That's something our entire family always seems to enjoy.) The day's topic was "sculpture" and we all four created clay pieces of "art".

In the world of neuroblastoma, many of our dearest friends are not doing so well right now. I've had my special "Holy Mary candle" that I burn for specific children really struggling or near death lit every day recently. Sadly, last week I unpacked the three "Alex and the Amazing Lemonade Stand" books I had already packed in our suitcase to have Alex autograph during our visit to CHOP this week after her sweet Mom emailed me about a week ago to tell me that Alex loves us, but most likely won't be up to doing this. ( wasn't upset about not getting my and my 'Berg Professor friends' books signed, but the fact that Alex wasn't physically able to do something like this was gut wrenching.) Then sadly later she emailed to say that it appears that Alex is losing her battle and yet another email again talked about her further deterioration.

Well, yesterday's email made me burst into tears - after a 7 1/2 year continual uphill battle, 8 1/2 year old Alex Scott of Philadelphia (forever our Little Lemonade Girl) gained her Angel wings and made her trip to Heaven while holding her parents hands as she departed her life here on earth. I'm just sick! It's not to work like this! We are to hold our parents hands as they die - not our children's. This is senseless! Heaven gained a beautiful angel, while we lost a tremendous friend with a HUGE heart. You cannot even believe the sadness and emptiness Shayne and I feel. I can literally see the pain in Shayne's eyes. Knowing fully what was coming, we had discussed this earlier, so we sat down for a family meeting to tell the girls that Alex had died and was now home with Jesus and finally cancer free. (And how totally ironic that Shayne wore his Alex Lemonade Stand tee shirt and his yellow Alex bandana all day. Wild.) At this time, I do not yet know when Alex Scott's funeral services will be or what the arrangements may be, but Christi and I would like to go. We will be flying into Philly this week and we are hopeful that it will work out that we can somehow go and say our final good-byes to this great friend - a little friend who raised awareness about childhood cancer around the world through her amazing Lemonade Stand. We love you, Alex - rest in peace. You've made the world a better place and we will forever be grateful for you and your work here on earth! Until we meet again - we love you, honey!! ANGEL ALEX...from hero to legend; thank you for so richly touching our lives. Today I cry tears and I will drink lemonade in your honor and memory.

And Simon - a friend we met in NYC who has a birthday exactly five days away from Christi's is also near the end of his life on earth. Another good NYC friend, Jonathan W. our Canadian friend, is now dealing with progressive disease after basically being "stable" for many years. He was our hope! Shayne and I love these children like our own and we feel such tremendous loss and helplessness right now. We're trying to help get the Watson's to the USA where they can get superior medical care that they cannot receive in Canada. Shayne and I have many, many times compared Christi's disease to Jon and Simon and Alex's situations feeling like we were in the same boat with "persistent, stable disease". We feel our hope is being dashed and our hearts are breaking for our precious little friends and our big friends- their parents as well. Our prayers are with them all and my Holy Mary candle burns brightly. (Thanks, Mike! It's been a gift that has been used to "summons the angels" to surround our little friends and to give them peace as they transition on to eternal life and for Jesus to welcome them home with open arms time and time again.) I request your prayers for Alex, Simon, Jon and also Shelby who has now entered hospice too. All of their web sites are in Christi's Clubhouse. Even though there are blue skies out doors, it all seems terribly gray now. This evil disease is relentless and these kids just don't have a chance.

Today's blood counts at the hospital were down even father, but given the patterns of this first two cycles - this is to be expected, I guess. (2.3 white, 10.3 hgb., 91 platelets, 1.000 ANC)

Here's wishing you a great rest of the week! Thanks for everything!

With peace and thanks,

PS: I promise to update as soon as I can when we home from "CHOPing" with the test results.

Christi's Joke: When does Valentine's Day come after Easter? (in alphabetical order)

Shayla's Funny: I was fixing Christi's hair, which was taking a very long time to unbraid the beaded thingy the teenagers wove into her hair and Shayne was working at the computer. Meanwhile, Shayla was pestering us all for some love and attention. Finally, Shayne told her to go upstairs to get ready for her bath. Shayla, a little Junie B. Jones herself, responded as she marched off toward the bathroom, "Well, next time you could possibly try saying that in a little nicer tone of voice, Dad!"

Wise Words from Shayla: Sunday evening, Shayne and I sat around the backyard campfire while the girls were picking berries and nature objects for their baskets. Suddenly, Shayla came running over to me and said, "Mommy, you look worried!" I told her I was sad about Alex going to live with Jesus because so many people will miss her. She pulled up a little lawn chair beside my hand, took my hand in hers and said, "When something bad happens, something good happens. Alex died. That's sad. But look - there's a pretty sunset; that's good." (This five year old has certainly learned a lot about life's lessons. I bit my lip to keep my tears from flowing and I squeezed her hand.)

What's Next?

Tuesday: go to the Toledo Zoo with Christi's friend and her family

Wednesday: fly to Philly, check in the Ronald House - hopefully there is room for two more. Shayla will be with sweet friends during the day this week! (Thanks: Werlings, Smiths and Kristin R!) (Hopefully, we can get to Alex's services wherever and whenever they may be.)

Thursday, August 5th: get prescriptions filled, blood tests, VMA/VHA urine collection testing, bone marrow testing, MIBG isotope injection, CT scan, EKG & ECHO testing for heart function. (You go, girl! And hopefully Mom won't mess any of this up and everything will be on schedule, etc.! I'm always a nervous wreck trying to pack so much in so little time. If you get backed up at one point, you may be in a sticky situation! I certainly won't be sleeping well.)

I am happy that Michael from NYC will be back at CHOP for nearly identical testing as Christi so I'm most anxious to give his beautiful Mom a huge hug and to see Michael in person. Oh, we pray that this sweet child who is now fighting neuroblastoma for a THIRD time will have good news from his tests.

Friday, August 6th: 9:30 AM MIBG scan with the video of "Holes", 11:30AM meet with the wonderful Dr. Maris to learn of the majority of the test results, arrive back home about midnight hopefully with good news and with the fourth round of ABT in hand. (Just to recap: Her lasts tests/scans were done in mid-May. She was "neuroblastoma free" on all tests/scans - EXCEPT for her bone marrow tests which indicated about 5% disease on both side. Her heart function was fine which allowed her to continue on with round #2 and #3 of this ABT she continues to swallow every morning at 8:30 AM. Her last day of ABT is Thursday. Even if she would be NED, her treatment must continue due to the fact that there would be, without a doubt, nb cells still circulating in her body unable to be detected and just waiting to take off.)

Sat., August 7th: Blood drive and lemonade stand on Saturday morning at Hospice on Perry Street. 9:00 AM to 3:00 PM.

Saturday, August 14th: Christi will "compete" (perform actually, but don't tell her that) at the Attica Fair Cheer Competition. She's been perfecting her cart wheeling skills for weeks now - hmmm. No improvement there, but she's sure trying hard and is oh so cute in her little uniform her awesome music teacher made for her. It sure is cute to watch her practice her little routine, especially the little dance section to "Christi Thomas, Here's a Promise" (Thanks, Lee!)

I'm thrilled to report that thanks to some sweet and extremely generous prayer partners, the girls and I WILL be flying to Madison, Wisconsin to watch Shayne graduate from the Graduate Banking School!!! Yahoo! I can't even believe it! I'm so proud of Shayne and so thankful for great friends getting us there with one way tickets out of Toledo to Madison!! We shall then spend the weekend at the Wisconsin Dells with good old Webby (awesome Eric) and his wonderful wife who are also coming to the University of Wisconsin to watch Shayne graduate too!! Don't read this next part, Eric. (Shayne has been joking, "How am I going to find another computer geek to wake me up and make me go running every morning I'm in Madison without Eric?" We shall miss Daddy while he's gone.)

One of the images that I haven't been able to shake throughout this nearly two year ordeal has been that Shayne had just returned home from Graduate School shortly before Christi was diagnosed with cancer in 2002. That year at school he took the picture of Christi in her lavender ballet outfit that had just been taken and he showed it to many in his class. After her diagnosis, Eric put that same picture up on her website's home page and a sweet female emailed me and said that she got an email about Christi from Eric and when she pulled up the website and saw that it was indeed the same precious little girl that Shayne had just pulled the picture out of his wallet weeks earlier, she burst into tears. But..............who would have thought that she'd still be here - and doing so well, two years later?! Thank you, Lord!) Anyway, we'll drive home late Sunday night and I shall start back to work on Monday, August 23rd. The girls will join me at school with Christi's first day of third grade being Tuesday, the 24th and Shayla's first day of kindergarten will be Wednesday, the 24th of August. What tremendous blessings we've received!!

PRAYER REQUEST: While we pray to hear NED or stable disease, may God give us strength no matter what the testing results show and may God grant good news of comfort and healing to all of our little friends - so many in our "cancer family" are not doing very well right now and too many have been gaining their angel wings. We pray for a cure as well as for comfort and peace.

We also pray for little brother, Jonathan and his Father. Recently, I wrote about Angel "Big Kristy" our teenage ballet / cancer friend from New York and her sweet Mother, Donna. Donna died of an apparent heart attack last week. We pray for comfort for "the guys" no longer just left in Vegas while Kristy & Donna live and treat in NYC, but now living forever alone. I'm certain Donna and Kristy are riding in a "Ronald van through the clouds" if there is anything like that.......Kristy is chatting on a cell phone with her teenage friends back in Nevada while Donna is still protecting Kristy like she always was, "Who is that? Who are you talking to now? I need to know who you are talking to." While Donna's death, saddens me tremendously as I think of Jonathan and how she loved him and found it so hard to be far, far away from her young son, I do believe that "the girls" are together in a better place. I could never imagine them apart and now I won't have to anymore. Together forever!

Rules for writing a cinquain -a poem with five lines

1st line: one word (title)

2nd line: Two words that describe the title

3rd line: Three action words about the title

4th line: Four words that express a thought or feeling about the title

5th line: One word that means the same thing as the title

Angela's attempt at a cinquain: "Cancer"
evil, wicked
sneak, connive, trick
ongoing heartbreak and fear

Shayla's cinquain: "Dogs"
wolf, wolf
sleep, walk, eat
I cuddle with doggies
by Shayla M. Thomas
age 5

More from Christi:

butterflies, animals
blooming, buzzing, running
nature is very lively

wild, free
running, galloping,
horses: fun to ride

eyes, meow
pounce, eat, sleep
cats make nice pets

"Bells" (a funny one from Christi)
metal, church
rings, dinging, singing
church bells are ringing
alarm clock