Wednesday, Shaylauary 23, 2005
On the 10,000th try, there was light!
Happy Belated Birthday to Thomas Edison!
Dear Christi Crew,
It's been over a month since I wrote my last public journal entry of "The Thomas Times" for Christi's website. Not that this family would ever know what "normal" is (smile) but I think this is as close as we may ever get. Our news these days is basically "normal" and I can't think of anything more glorious - especially in the midst of cancer treatment! We Praise Him!! As I reflect on the past two and a half years, it overwhelms me that we have witnessed first hand the tremendous goodness so lovingly bestowed upon Christi and our entire family. Unless one has walked in our shoes, one could never truly understand and know why we are filled with gratitude and so humbled. We don't know why Christi is still with us here on earth, but I continue to believe that her work here is not yet done. I don't know what this "work" is, but for whatever reason it's not done; therefore, she's not just here, she is absolutely THRIVING! Thank you, dear Prayer Partners!
To have complete strangers stop you in the store and tell you that your daughter is a hero and an inspiration and that they lift her up in prayer every day is simply profound! To have adult cancer patients say that she gives them courage and hope because of her positive attitude and commitment to keep marching on simply leaves me speechless. Most folks assume she's in remission since she looks and feels so well right now; I wish that were the case, but I guess it is just not to be - yet! (smile) We have met the most wonderful people (strangers turned friends) that we never knew and never would have known had Christi not led us on this journey and we have seen the goodness of folks that we've been friends / family with for our entire lives as they've opened up and loved us like we don't deserve! It's incredibly heartwarming and continues to restore any "Doubting Thomas's" questions(smile) this family may have had.
We attended the church fundraiser last month and a sweet Priest came up to us and told us how Christi has brought so many people closer together and how she's done such good work. I was deeply touched. He also called us "noble people" for doing what we've done for Christi - but how could one give up, not educate themselves and not get their precious child to the best of treatment centers and ever live with themselves? Even though it wasn't easy, we knew we couldn't and we will do it all over again - if ever need be! Recently, she was reading and asked Shayne, "What's a sacrifice?" I could only chuckle and shake my head thinking about all her Daddy gave up for her knowing it'll be years before she understands the sacrifices - big and little that MANY have made for her life not just her parents.
People are amazing!! Kind opportunities fill our minds and hearts with the best of treasured memories forever to be cherished. However, if we had a choice, we'd trade every kind deed and thoughtful memory back in for a life free of cancer and not to ever know what we now know about the horrible "Cancer Monster" that does haunt us daily. Regardless, whatever the outcome is to be, we will be forever changed folks. One can't witness firsthand the pain, heart break, suffering and death experienced with the reality of childhood cancer and not forever be a changed person. We've been totally immersed and have witnessed far too much, yet all the while this has taught us first hand the real lessons of life. (Geez, dear Lord, I think we knew them well enough before this, eh? Hee hee)
It is with heavy heart that I report of yet another horrible death due to this beast that has touched our family. Diagnosed 8 weeks after Christi, we met Joshua and his family while living at the Ronald McDonald House together in NYC. Joshua earned his Angel wings on Valentine's Day after a very long and courageous fight. Now he's resting, cancer-free, on cloud nine with his family members who were without a doubt there to welcome him back home! Our thoughts, hearts and prayers are with his wonderful, wonderful family. Joshua's site is in Christi's Clubhouse if you'd like to leave a message of condolence.
Since my last entry last month, we received the "official" test results back and they weren't at all pleasing!! Yikes! The black and white printed copy of the January 13, 2005 MIBG scan said: "There is a focus of very mildly increased activity superior to the left kidney and in the left femur which were very faint on the previous scan and are of uncertain clinical significance." UGH! Talk about a slap in the face! After hearing from Shayne that the oncologist said it was "clean" and knowing that it was "clean" in October, I was dumbfounded! Well, after emailing and waiting a few (very long) days for a response back from the awesome Dr. Maris, this is what I received via email which put my mind at ease, well...as "at ease" as you can be when your child has cancer and you know it'd like to flare up and rear its ugly head again:
"MIBG scans are very subjective. I had a long discussion with the nuclear med doctors after they read the scan, and the bottom line is that the scan is normal. The leg shows one very small area that is maybe slightly more prominent than all of the other bones, but this is a very, very soft call and has been that way for a long time. I interpret her scan as normal. I can not promise that there is not a small focus of activity there, but I am optimistic that there is minimal disease in Christi and that the ABT is helping mop up anything that is remaining."
A highlight for January was the girls and I attending the school dance. Many of my students were asking me if I was going to the dance. When I informed them that I'd have to bring my daughters because my husband was out of town, they were thrilled and said to bring them - so I did and grateful was I! Christi and Shayla had a blast! (And I did too - something about watching 13 and 14 year olds dancing to the hokey pokey and the chicken dance, just makes you laugh!) My students were incredibly kind and thoughtful. As soon as Christi or Shayla would come back over and join me with the group I was talking to another group of students would come up and take the girls back out to the dance floor. Amazing! At one point Shayla skipped over to me and asked, "Mommy, what are you watching them so closely for?" I responded, "Kissing! I'm making certain that there's no kissing and that no one is getting too close." And then remembering I was talking to a five year old I quickly added, "It is cold and flu season you know."
Christi has already informed me that I can chaperone her Jr. High dance and that it's only 3 ½ years away. (My students said that she'll change her mind when she's in Jr. High and I'll have to be stuck outside working the concession stand! Hee hee!) Seriously, I just hope she lasts that long and I'd be so thankful I'd most likely buy pizza for all the students.
In early February she attended her very dear friend Kaylyn's party. It was awesome to witness about eight little third grade girls skipping all around so happy to be together and Jenny and Laura of course planned a delightful celebration complete with crafts, cupcakes and games. Christi still beams when talking about that very special afternoon.
Our February highlights include Shayla's sixth birthday as Shayne renamed the month "Shaylauary" instead of "February" convincing Shayla that every special little thing we did that month was to celebrate her life on the planet. She is so precious and we absolutely treasure and adore this beautiful gift from above! The other HUGE highlight was a long weekend visit to Grandma Nonee and Paw Paw Joe's as they now reside in Florida for the winters. (Thanks for making all of that possible dear Nonee and PawPaw!) That same weekend Shayne and our dear friend Tom went to spend some time with Shayne's Dad. They too had a most enjoyable visit!
On President's Day we were scheduled to fly back home. I woke up with the flu. My muscles ached, my throat throbbed. I vomited and I was exhausted - even after sleeping about ten hours. The experience at the airport won't hopefully be experienced ever again. I felt absolutely rotten. It was all I could do to just order the girls some food before our flight. We found a table and I told Christi to wake me up when she was finished and I put my head down on the table and slept until she tapped my shoulder and said they were done. Then we went to our gate where we learned our flight was delayed due to snow in Newark and it'd be at least three hours. Thank heavens the girls were as good as gold as they sat and played together while I curled up on the dirty airport floor and slept off and on fighting chills. All the time I kept thanking God that it was ME and not one of the girls. One can't spend any time in a Children's hospital and ever feel sorry for yourself after witnessing what goes on there! I'm feeling much better now!
While in Tampa, I borrowed their computer to pull up my email one day and sadly learned from one of our hero's Mothers (Who also just happens to live in Tampa!) that we met in NYC was told that her son most likely has just weeks left to live. This fine young man has fought neuroblastoma for 6 ½ years, which is why we've looked up to him for hope. Most neuroblastoma patients die within the first year. Sadly, the doctors have told them that it's not the disease that will most likely kill him soon, but the years and years of treatment as now his body is failing him. It was a drastic reality check and once again another horrible reminder of what is really going on here.
Christi was seen by her Toledo oncologist on Wednesday, February 9, 2005. Her blood counts, accessed out of the mediport in her chest, were all normal. Yahoo!
Dr. Jasty held up a letter from Dr. Maris in Philly saying she was pleased that Christi received such a good report. I asked to see it. It was written in technical language, but basically said something like: "Patient, with a full head of hair, just completed 8th round of ABT - 751 shows no outward signs of being on any chemotherapy and is quite active. Due to an upper respiratory infection, bone marrows were unable to be conducted. The MIBG scan is normal showing no abnormal uptake. After a long discussion with her parents all parties are in agreement that it is not wise to start a different clinical trial, but to continue on with the ABT that has given her a good quality of life. Therefore, she was sent home with three more rounds of ABT and we'll see her back at CHOP in April." (Now that was polite! I'm thinking if I would have written the note it would have said: "7 year old girl, bored to death waiting so long to see me took my office by storm drawing and coloring on everything that was made out of paper. I couldn't get her out of my office fast enough. After she giggled profusely while I checked her abdomen for tumors, I thought she'd next start coloring on me so I quickly sent her home.")
She continues to enjoy school, Girl Scouts, karate, ballet and piano and her piano is really taking off. It's just remarkable! That is by far her favorite activity. While my sweet sister and her family were up to spend the weekend of Shayla's birthday with us, we were sitting around visiting and my sister said, "It's like lounge music," as Christi played her keyboard in another room. I too am amazed at how well she is playing and the fact that she's really enjoying it so much. She even took her lesson book with her to Tampa where she played for Nonee and Paw Paw at their Word of Life center. She did approach Shayne about buying a piano one night at dinner, but we wouldn't have room for one anyway. She then decided she could make construction paper foot pedals and push on them instead which cracked us up. Only Christi! Speaking of "only Christi":
One day the sweetest "Birthday Box" arrived from a very kind Christi / Shayla supporter in Birmingham, Alabama. Christi watched with awe as Shayla unpacked the box asking if she could play with anything in there. Finally, Shayla gave her the brightly colored pieces of tissue paper; therefore, Christi made a dress! Pretty Cool, Christi! I think when you want to go to the prom one day, we'll just give you some tissue paper and save a lot of money! Hee hee!
As always, thanks for checking in and thanks for everything!! Hopefully, all will continue to go well and again I shall not update for a month. As the old cliché goes, please consider no news, good news! Until next time..
With gratitude and thanks and still with feelings of peace and hope,
Christi's Joke: What should you drink on a hot day? (Kool-Aid)
Shayla's Joke: What do dogs eat at the movie theater? (Pup corn)
Christi shall continue with her 10th round of oral chemo (21 days on, 7 days off) and getting her blood counts drawn as scheduled. She shall return to her hospital (CHOP) in Philadelphia with Shayne in mid-April for her tests/scans (after round #12 of ABT) and if they indicate that her disease is the same or better, she will again return home with three more rounds of ABT-751! That would be ONE YEAR on ABT-751, truly a miracle drug in our books!! Thank you Abbot Labs, Dr. Maris, researchers, generous fundraising donators and all involved in working tirelessly on the behalf of Christi and all of these sweethearts bravely fighting for their lives! It's just amazing to me that this drug was not even available for Christi one short year ago. Praise God! Thank you all for working so hard for one day may a cure be found!
Memorable Moments: Shayne had just finished reading the newspaper and he pointed out to Christi that the Red Cross was reporting very short blood supplies. She read a bit of the article and then looked up at him and said, "That article should be on the front page." I know she's only seven, but 'm certain her wheels are spinning to sponsor another blood drive for the American Red Cross.
Shayla's birth - February 12, 1999:
Our dear friends Beth and Ned recently sent an email back to me which I sent to them in February of 1999 about Shayla's birth (via C-section - like Christi and "Daddy" Shayne Shayla was also a "breech baby"). I'll post it here, since we just celebrated her sixth birthday! Six wonderful years later she remains a joy and a total delight. A social butterfly and always in a happy mood - little Shayla Marie!
"..It all was flawless. Becky was there to keep me calm and Shayla was out in just seven minutes and was screaming her head off. A nurse brought her over to me and unstrapped my arm. I put my hand on the side of her face and started talking to her and immediately she quit crying and started at me. It was the most incredible moment! I'll never forget that!
Shayla has now been home for six days and is still the perfect baby. In her eleven days of life so far she has maybe cried for a total of just one hour! Nights are also going very well as she has been sleeping between 5 and 6 hours at a time before she wakes up hungry and then returns to nighty night land after a snack. Christi has been doing very well, but she doesn't like other people to look at or to hold the baby. She'll yell, "No! No! Mama's baby!" In the hospital, she actually chased a nurse into the hallway pulling on her coat when she wheeled Shayla out to do some blood work. I'm sure she's jealous, but she's handling it very well. The only bad thing was the first night at home Christ wouldn't part with any of her baby blankets so I had to swaddle little Shayla in a towel instead. ......"
CHRISTI'S CANCER HISTORY: After experiencing back pain off and on from April of 2002 until September of 2002, Christi was finally diagnosed with neuroblastoma on 9/11/02 at age 5.4 years. She treated at Children's Columbus per #3891: surgical biopsy, high dose chemo for four cycles - bone marrow didn't clear, transferred care to MSKCC in NYC.
MSKCC: December '02 to August '03 for: 3 rounds chemo (no response), 4 rounds 3F8 monoclonal antibodies/beta glucan (tumor progression), surgery to remove the tumor from along her heart and spine by Dr. L. on Grandpa Vince's birthday July 24, 2003.
Transferred care to CHOP (Philadelphia) August 2003 - Current: 3 rounds low dose Irinotecan, (stable or improved condition) two high dose MIBGs treatments (internal radiation) with stem cell rescue Nov. 2003 (no response), 3 rounds 13 cis-retinoic acid (disease progression, April 2004) and currently on her 11th round of ABT-751 - new oral experimental chemo.
Now age seven and three fourths - anxious to be eight!
Most thankful for: never putting her through transplant
Biggest treatment regret: attempting the high dose MIBG
Some would consider her a guinea pig, yet we call her a pioneer - hopefully leading and paving the way to a cure for others yet to be diagnosed with this horrible beast we know as "cancer". We have been richly blessed!
Thank you all!
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Shayne & Angela Thomas: email@example.com