Thursday, April 15, 2004
"Washington: A city where you can get sunburned then frostbit all within 24 hours," said by Christi S. Thomas freezing on April 12, 2004 - at the White House Easter Egg Roll
Long overdue greetings to our Prayer Partners and Friends! I apologize for not updating with the test results sooner; however, the news was not good so every time I sat down to tell you I ended up in tears. We were also quite busy in Philly and in DC. (Check out the pictures. Eric had them up on the website before we even arrived back home! Unfortunately, the pictures I took of our sweet, sweet, sweet Angel Flight friends are unable to be opened. Hopefully, when Eric & Alicia come to spend the weekend with us, Eric may be able to open them. Since the website has been established, I've never had this happen. I'm crushed! Those wonderful people were such a blessing!) Then of course there was the nine hour drive home on Monday afternoon/evening. We arrived safely at home just before midnight on Monday evening and have been rapidly finalizing plans for Christi's first Holy Communion which is on Sunday morning. We're feeling a bit overwhelmed at this point. Now I shall catch you up:
Thankfully, Shayne and Shayla arrived safely in the wee hours of the morning on Friday. Sadly, I am not writing with the news we had hoped and prayed for. Dr. Suzi met with us promptly at 10:00 AM at CHOP. Christi's MIBG scan was again clean. YES! Thank you, Prayer Partners!! (However, we are questioning if she is perhaps MIBG negative now because how can she have this much disease and have a clean scan? Hmmmm!) Unfortunately, Christi's bone marrow is still showing neuroblastoma cells. UGH! UGH! UGH! This is just terrible. I somehow managed not to cry. The exact percentages were not until today so we didn't know if her disease in the marrow was the same or worse, but Suzi did say that it was easy for her to find the blue NB cells scattered throughout the samples of CT's bone marrow. (We learned yesterday afternoon that it is worse. There is even more cancer now in her bone marrow.) What is another big setback is her CT scan which Dr. Suzi told me on Thursday "looks fine to me, but I want to have the radiologist read it before I say anything official". Well, what I assumed was another clean CT scan was not. It now shows a questionable new spot on her right lung and increased uptake in the thymus. While both Dr. Suzi and Dr. Maris have looked at it and do not believe that it is neuroblastoma, they do not know what it is. (Well, Shayne and I have been "around the block a few times" with this horrible disease and we aren't foolish enough to believe that this new area of concern is not neuroblastoma. We've seen it time and time again with other children. Fuzzy images, questionable spots, etc. then POW full blown disease with the next set of scans.) The probable area of new disease is relatively small at this point .4 cm X .3 cm (not that small means anything in the world of cancer; it is definitely a setback for the Thomas team). Of course, this cough she's had since March 1st now makes us cringe every time we hear it as we assume it's this evil cancer now invading her lungs too. (Approximately 6 times per hour she makes 1-2 coughs) We pray that we're wrong and that this enlarged nodule or whatever it may be will soon somehow disappear forever, but we can't forget the "clearing of her throat" she had before diagnosis and again when her tumor started growing during last spring's 3F8 treatment before the tumor was removed in July. Obviously, the recommendation is to end the 13-cis-retnoic acid attempt and to try something else as soon as she's eligible - which is Monday, April 19th - Shayne's 36th birthday.
CHOP's first recommendation is ABT - 751 (a Phase I study). ABT -751 are oral drugs which are designed to get around drug resistance. Since Christi's disease has become resistant to the chemo attempts, this is very interesting. Their second choice would be to try Fenritnide (a phase II clinical trial - now popular on the west coast and a drug which Shayne and I fully believe will replace the current 13-cis-retonic acid treatment in future protocols). This trial would consist of taking about twenty large pills per day and it is also from the 13-cisretonic acid family. It has shown some promise in killing NB cells. Either treatment can be done at home. While we are hopeful, we have been told that neither has ever cured anyone and it'll be yet another effort to buy time with our beloved princess Christi. Of course there are side effects with both trials, but I won't go into that now. I'm simply not up to it.
Shayne and I have consulted with other oncologists, discussed, researched and prayed about this. We shall have a final consult and make a final decision today with the great folks at CHOP. We are leaning heavily toward starting ABT. It is our hope to have Christi and I fly to Philly somehow on Wednesday, April 21st. She needs to be there for five days before starting this first cycle. Then after that all treatment can be done at home - praise God!
Even though somber after the disappointing doctor's consult, we made the best of Friday by taking advantage of the free Trolley passes that the Ronald McDonald House folks so lovingly bestowed upon us. I especially enjoyed visiting the Betsy Ross House, Shayne liked the Rodin museum the best and the girls enjoyed going to a puppet museum the most. We thank a very talented and delightful teacher at the "Spiral Q Puppet Theatre" for bending over backward in giving us a first rate tour which even included puppet making for the girls! Yahoo! She was a doll!
So, with all of the bad news behind us, we drove south for three hours to our great nation's Capital - Washington DC!! While Shayne and I have been there many times, there was something special about sharing this tremendous city with our children for their very first trip. We arrived on a hot and sunny Saturday morning and found a great, free parking place for the van for the day! Then the girls hopped into their strollers and off we went to enjoy the sights. We took in: The Lincoln Memorial, The Vietnam Memorial, ice cream on the lawn of the Mall, a demonstration, the Capital, the White House, a Scottish bagpipe band and a meal of foreign foods at the Old Post Office Pavilion before checking into the hotel. "Seize the Day" - a motto we continue to embrace was definitely how we tackled Friday morning's bad news even though inside our hearts were breaking!
Sunday was spent visiting the Smithsonian's Natural History and American History museums. Christi, who has wanted to go to Africa, started a project on the "Animals of Africa". With a sketchbook in hand she copied many signs, sketched some animals and graphs, and took many digital camera pictures with the hopes of turning this into a report or something for her class.
We also met with the great NCCF folks and picked up our tickets for the next morning's egg roll on the White House lawn. It was a huge delight to finally meet beautiful "Jessica" in person. She's been a tremendous, faithful Christi Prayer Warrior and dear friend since one month after Christi's diagnosis. She flew in from California to work the event and we're most appreciative for all of her hard work and efforts for our cancer fighting children everywhere.
Later that evening, she called on my cell phone and asked if Christi would like to be on the Presentation Stage with some other children at the kick off ceremony at the White House. Wow! What a thrill! "OF COURSE!" I said. I met her in the lobby where she traded our tickets. I couldn't sleep all night as I prayed for there to be sunny skies and no rain. The event was to be cancelled in case of inclement weather.
Well, I guess the White House doesn't know what "INCLEMENT WEATHER" means. We dressed in our Sunday best (The girls in lovely new matching Easter dresses and I in a coordinating new suit) and hopped in a cab in the freezing drizzle. We fully assumed that we'd arrive, get the coloring book featuring Christi's art work and be back at the hotel within an hour. Well, much to our surprise, the event was in full force! Going through security in the pouring, cold rain, my cell phone rang and it was Jessica, who was sweetly waiting on the front lawn for us, inquiring where we were.
Yes, it was miserably cold; however, we all were just so thrilled to be there that it really didn't matter. Christi was held by Shayne under a tree to keep as dry and warm as possible, but Shayla could have cared less. We buzzed her around meeting the different characters and participating in the different activities. (Much to my disappointment there were TREMENDOUS children's authors scheduled to read to the children later in the day; however, with the weather I knew we wouldn't stay to meet any of them. We were soaked)
Finally, it was time for Christi to go up on the stage. President Bush was in Texas and Vice President Chaney was in Japan so welcoming the children to the White House was US Secretary of Education - Rod Paige. We stood in our waiting spot by the stage when suddenly a lady said, "Children, do you want to go up and see the bunnies?" There were people dressed in bunny costumes up on the stage. Naturally, Shayla wanted to see the bunnies and we thought that was okay. What we didn't realize is that the lady was getting the four children up there because it was time for the welcome. Ooops!! So, there stood Christi's double, her stand in, her sister on the stage, not Christi!!! (YES - "Junie B. Jones" managed to get herself on the stage in front of the White House with the Secretary of Education.) What a hoot! Shayne said later that Christi could have cared less as he stood behind the stage continuing to hold the shivering child. It didn't matter at all to her. (Thank, God!) Well, Shayla being Shayla just stood up there looking around with a smile here and there. I stood in the front row with the press, laughing and taking pictures. What a riot!! When it was over, Shayla came down the stairs and said to us, "I looked at every camera and smiled." Soooooo funny! Well, I wondered what NCCF would think about Shayla being up there with the three little cancer kids, but when Jessica hung over the front fence and was laughing as hard as I was I knew it was okay!!! Whew!
Next, Christi finally wanted to get out of Shayne's arms and try her luck at the traditional Easter egg roll. With just two hard smacks, her egg crossed the finish line first. Go, Christi! We couldn't get in a taxi soon enough! Happy we were to be back in our warm hotel, wearing our jammies and eating a second complimentary breakfast - yummy! After a warm bath, Christi felt much better.
Next it was on to the wonderful National Childhood Cancer Foundation's reception for lunch. Here Christi was treated like a movie star! She was photographed for her art work. She signed an autographed copy and was even interviewed in the spot light. She shined - totally loving all of the special attention from the NCCF. Forever grateful we will be for their very special invitation and hard work in searching for a cure for our precious daughter and all of these brave children.
After the hectic week and weekend and long late night drive home, on Tuesday I let Christi sleep. She woke up about 8:15 and was in school before 9:00. After school was the girls' first day back to gymnastics in nearly TWO YEARS! They had been asking and asking, "When can we take gymnastics again?" Thankful we are that everyone is strong enough at this point to partake. Most of our little cancer fighting friends are simply not able to do anything like this. We've been blessed. I have a meeting today after school so my Mom will be taking the girls to their gymnastic classes again. I found that I had really missed sitting there talking with the other Moms and watching the children out in the gym. I'm most grateful!
My "Moving Moment" came on Tuesday evening when Carla brought over Christi's finished First Communion Dress and veil. Wow! It is stunning!! Absolutely gorgeous!!! Carla's sewing skills are simply unbelievable and seeing Christi float down the hallway all dressed up made both Shayne and I blink away tears.
Thanks for everything you guys! Your love and support sure gets us through tough times and difficult days!
Finally, it is with tremendous sadness that I share our little (smart as a whip) friend and sweetie from Texas, Jordan, entered the gates of heaven on Wednesday. His sweet, wonderful Mother always did so much with Christi during our time in NYC. I often teased her that she should have had a girl since she and Christi did a lot of "girlie / Cinderella style" things together; however, the reality is her little boy couldn't have had a finer Mother and she was fabulous with her little guy. I've spoken with Cheryl a few times in the past couple of months and her ability to try to offer support and help for Christi while her own sweet baby was in such pain and paralized as a result of this nasty cancer - she's amazing! May God give Cheryl and Don strength and comfort to endure life without their precious child. Jordan's website is in Christi's Clubhouse if you'd like to drop a message of condolence
Jordan's Rules: Let your children sleep in your
Christi Comment: On the trolley heading up toward the Rodin Museum the tour guide said "We are now turning onto Benjamin Franklin Parkway". Christi leaned forward and asked "Why do you drive on a parkway and park on a driveway?" (Excellent question, Christi! We don't know the answer either!)
Christi's Joke: What kind of roll does the Easter bunny eat? An egg roll.
What's Next? Phone consult today with CHOP oncologist Dr. Suzi. First Communion on Sunday. Most likely Christi and I will be at CHOP Wednesday, the 21st to Tuesday the 27th where she will probably start the clinical trial for ABT. We are planning her 7th birthday party for Sunday, May 16th.
Funny from Shayla (Here's an email I recently sent to some friends:) Just got home from Shayla's kindergarten screening. I said, "Let's take off your pretty pink dress to eat lunch." I pulled it off and there were NO PANTIES on her bottom!!!!!!!!!!!! Oh my heavens! I said, "Shayla. Where are your bloomies?" She said, "You said to go potty before we left. You never said to put my panties back on." At the screening no one told me, "By the way idiot Mom - your kid needs to wear underwear to school!!" Oh, I'm laughing too hard to be mortified like I should be!! Can't wait to hear what my colleagues have to say about this one!
To Christi's new Pen Pal (A girl she met at the Ronald House):
Are you in second grade? I am glad we are at least pen pals. My favorite color is scarlet because my favorite colors are red, yellow and orange. I got tired of yellow and just had orange and red. Mix them together and you have my favorite color. Don't forget to write me back.
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Shayne & Angela Thomas: firstname.lastname@example.org