(The final words of Pope John Paul II,
This morning finds me sitting down composing journal entry #142. An amazing fact in my mind and if there is anyone in “Cyberland” that actually read all 142 journal entries, I owe you a big prize! (smile) Seriously, I know I owe Webmaster Eric a ton of thanks for all of his time, hard work and labor in posting not only all of the 142 journal entries, but also the thousands of pictures and countless other “goodies” he has shared with those helping Christi in her fight over the past 2 ½ years. (Did you notice he even has a little video clip of her playing the grand piano at
I’ll cut right to the chase and begin with the Philadelphia report.……….Christi’s trip back to CHOP began with Shayne driving the ten hour jaunt without any problems. Christi was THRILLED to be back at the Ronald House. The first cool thing for her is always a toy from the welcome wagon at the check in desk. After she deposited all of the soda pop tabs folks had sent with her (thank you) she took off to see what was new in the house. Once she made her rounds she was ready for a marathon Pokemon (Nintendo 64) battle with dad. Later, with great joy, she played the piano in the living room. The incredible Grant family (the sweet family who always seems to spoil us when we arrive in Philly) left an absolutely wonderful (and so timely) gift at the Ronald House………a letter from the Vatican dated March 9, 2005 indicating that their sweet little girls’ letter was received by Pope John Paul II and that he will pray for Christi in the healing love of our Lord Jesus Christi. Talk about moving one to tears whoa! That did it for me! (I’ll ask Eric if he can soon put the letter from the
Since CHOP was able to handle her in such an efficient manner she was able to get the maximum time to enjoy not only the RMH but also UPenn and CHOP. As always, Christi enjoyed her time being on the campus of the Ivy League’s
All went extremely well getting through her tests/procedures and happy were they to get to hang out with the wonderful Romano family friends of ours from MSKCC! Christi and Mighty Michael played in a playroom together. Finally, they were called in to meet with Dr. Maris. He reported that the MIBG was normal, however, there was an “artifact” showing up on her right scapula. The presentation of the spot was not consistent with disease so it is of unknown clinical significance at this time. Her bone marrows once again showed positive for cancer (5% one side and 5-10% on the other) and pleased we were that they were noted as being the same as they were in October of 2004 her last test date, six months prior. This is still a substantial amount of disease living symbiotically with her. Let’s hope and pray that the disease does not find a way to become resistant to ABT 751. That is our biggest fear at this time.
Friday night I spoke with some friends and family on the phone. A couple asked me if I was happy she was going to have to receive more chemo and I responded back, “Of course! I would love for her to be in remission; however, on Sunday we are going to the funeral visitations of two brave cancer fighters from
APRIL HIGHLIGHTS: We received the most incredible gift a couple weeks ago! A charming woman called and told me she read on Christi’s site that she wanted a piano now that she’s learning how to use the pedals and now that she needs more keys than are on her keyboard, but that we didn’t have room for one anyway. Well, she said that no one was playing their digital piano any more and it was smaller than a regular piano and she’d like to give it to us. Oh my! Well I knew I couldn’t accept such a generous gift without checking with Shayne first. Shayne was just as shocked as I and I called this sweetheart back and told her we’d accept. I can’t even begin to tell you what a joy it is to hear Christi play this beautiful piano many times throughout each day. I hear piano music while folding towels, putting away dishes, writing, etc., etc. What a blessing! And, as we were about to leave this Prayer Warrior’s home she asked if the girls could have a doll. Shayne said no and I said, “Only if you insist.” Shayne and I followed the girls back into her home and soon I heard Shayla scream, “AMERICAN GIRLS DOLLS!!!!!!!” Yes, absolutely unbelievable! I was stunned. Each girl picked one. More lavish gifts on top of the piano yet, shocking! She said that she didn’t have girls to play with them and trust me they’re being played with daily now! It was the sweetest thing! As I’ve said many times before, “God’s people are good!” I’m disappointed to say that the thank you card I sent was returned as I do not have her correct address so……..THANK YOU, PATTY A.!!!
A very special dinner also happened this month. It is our nightly tradition when we all sit down and eat dinner together to go around the table and share the best part of our day. When it was Christi’s turn she got up and left the table. She unzipped her school book bag and proudly walked over holding up a certificate with her photo on it for being the 3rd Grade’s Student of the Quarter. Being a teacher and knowing that this award is for showing good manners, being polite and working hard it was all I could do not to cry.
Christi and Shayla would most likely say their best part of the month was a weekend trip to
Christi’s April Highlight: She enjoyed her tour through
Shayla: Earned her orange belt in Karate and can now ride her bike without the training wheels! Wow!
Shayne: His birthday is April 19th!! (Tomorrow!!)
Angela: Professionally, a couple of very exciting and enlightening things happened this month. A sweetheart I’ve become good friends with due to taking classes together at OSU is also a Professor in Education at
Secondly, I had my first opportunity to present at an International Conference the AERA. (It’s the largest educational conference in the world with nearly 15,000 participants and a booklet of sessions to select from over two inches thick!) While it was a most incredible experience for professional growth, I must admit I’m glad it’s over it was a ton of work! Last spring, my Professor at the time asked some of us if we were interested in submitting our research to the AERA. We worked very hard over the summer writing up our proposals to be presenters. In November, we were notified that our proposal had been accepted to conduct a session in
With tears and tremendous sadness, I report we lost three, yes - three fellow
Beautiful Amanda, forever 15, was diagnosed exactly one year after Christi and she also treated for neuroblastoma at Columbus Children’s and at MSKCC in NYC. The beast wouldn’t quit and Angel Amanda earned her wings way too soon. We were able to attend the funeral home for Amanda and we really enjoyed (and cried over) her scrapbooks she made during her journey.
The sweetheart Benjamin, forever 8, and his family blessed us by coming into our lives during the fall of 2002 when both kids were often inpatient together in
One of Christi’s favorite friends from NYC actually from
We are devastated, absolutely devastated beyond belief. We feel as if we have deep holes in our hearts. If you’d like to leave a message of condolence to Amanda, Ben and Olivia’s families all three sites have been in “Christi’s Clubhouse” for years and
To the sweet Mothers of: Amanda, Ben, Olivia,
The Chosen Mothers
Most women become a mother by accident, some by choice
Somehow, I visualize God hovering over earth
"Armstrong, Beth, son, patron saint Matthew"
Finally, He passes a name to an angel and says, "Give
"Exactly," smiles God, "Could I give a child with cancer
"But, does she have patience?" asks the angel,
"I don't want her to have too much patience or she will
"I watched her today," said God. "She has that feeling
"But Lord, I don't think she believes in you," said the angel.
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child
"And what about her patron saint" asks the angel, his pen poised in mid-air.
God smiles and says..."A mirror will suffice."
Another dear person to us departed from the earth this past week-P.M Gillmor. Mr. Gillmor, long time chairman of The Old Fort Bank, died after a very full 94 years. He has been a special person to the Thomas Team. The support of The Old Fort Bank family has been crucial. We are thankful. When Christi learned that Mr. Gillmor was ill she immediately went to work drawing and coloring a picture. Her standard tonic is rainbows and flowers. She remembered, as we do, the tender moment she shared with Mr. Gillmor at a retirement reception held in his honor when he retired as Chairman of the Board. We shall miss you, P.M.
Thanks for checking in and for all of your blessings! I shall post again mid-May with an update about the new “8” year old in our lives you know the Cre”8”tive One, the one an oncologist once told us wouldn’t live to see her 7th birthday and soon we shall celebrate her “8th”. (I think I’ll send him a birthday party invitation reminding him not to dash others’ hopes and to remember what divine intervention can do. Smile.) Thank you, Precious Prayer Warriors!!
Christi’s Joke: Oh, she’s not awake yet for school and I see I forgot to ask her for a joke last night when I started this entry. Next time!
What’s Next? She shall continue taking her oral chemo (ABT 751) every day for the next 2 weeks. This is currently round #12 and we are filled with gratitude that it has kept her disease stable for a year. Whew! She’s schedule to take two more rounds and then to return to CHOP in late June / early July to see if it’s still working. I recently read on another NBIV fighter’s website that Christi was in her 2nd year of ABT wow! That is cool and I never thought of it that way! You go, girl!
Shayne’s Birthday is tomorrow!! What a wonderful husband and father he is!!
Saturday, June 4th: The Motorcycle Poker Run to benefit “MAKE A WISH”. We hope you can join us whether you have a motorcycle or not! Registration will begin at the AmVets in
CHRISTI'S RECENT PARTIAL MED HISTORY:
RECENT HISTORY: Urine Markers - not a good indicator for Christi as they were barely elevated at diagnosis when her bone marrow was 99% full of neuroblastoma; yet, it's a test that done routinely to measure neuroblastoma so it's still conducted with Christi.
Testing for catecholamines (VMA and HVA):
ECHO (measures heart damage) (
NORMAL BLOOD COUNTS:
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Shayne & Angela Thomas: firstname.lastname@example.org