Tuesday, August 19, 2003
Yesterday is history. Tomorrow a mystery.
We went to what is continually ranked as "The Best Children's Hospital in America" - Children's Hospital of Philadelphia (CHOP) on Friday morning at 8:00AM. The first patient I saw looked extremely familiar to me. Then when I read the bumper sticker on the wagon in which she was resting and read, "Raising Money for Pediatric Cancer One CUP at a Time." I knew EXACTLY who this famous little girl was! I waited until her Mother had finished her appointment before walking over and saying, "Is this the famous Alex who has the lemonade stands? I think I've been emailing with your Mother." Sure enough, it was "When Life Gives You Lemons, Make Lemonade - Alex"! This fall Alex was featured in Sports Illustrated magazine. She was diagnosed with Neuroblastoma when she was one. She's now seven and still fighting!! (Right now she's doing the same chemo that Christi currently is.) Gooooooooooo, Alex! Recently, this cute seven year old was on the Today Show - again for her Lemonade Stand which people participate in all over the country and then send their sales to her fund. So far she and her family have raised $120,000 for pediatric cancer research at CHOP. I definitely met an angel on earth on Friday morning. You may visit this neat little girl's web site at http://www.caringbridge.org/page/alexscott/ which is the newest addition to Christi's Clubhouse.
Our girls played with two of Alex's three siblings in the little play area. (An area so different from NYC!) Next, we met with the wonderful neuroblastoma guru, Dr. Maris of CHOP. This kind gentlemen spent nearly 90 minutes with Shayne and I. (That much time from a doctor?? impressive!!!) Of course he started the consult off with, "The decision that you are going to make is critical." I immediately wanted to excuse myself from the meeting as I thought, "Why did I get invited to attend this meeting? I can't make THIS decision and accept the consequences." This is so hard! No one knows the answers as to what may possibly cure Christi - if it is indeed even possible. Ugh!! To end the meeting 90 minutes later, Dr. Maris again reminded Shayne and I that it's entirely our decision on which treatment to try next for Christi. We have to resort to these experimental studies as there is no known cure for her disease. During our time together Dr. Maris went over a variety of possible treatments that are all experimental, yet that may get Christi NED. His recommendation is for her to do the new soon-to-open study of the double MIBG high dose infusion, followed by a rescue of her stem cells. There will be a total of 9-12 patients across the country enrolled in this study. Christi is tentatively scheduled for the very end of October and to be patient #2. We will continue to study and research and question, but we feel very strongly that this therapy is what we will indeed attempt to do. I'm not even going to try to write about everything that went into the decision and continues to beat our brains. It's absolutely overwhelming and I could take up AT LEAST ten pages with the pros and cons and dangers and unknowns and all that went into our decision. It's absolutely grueling!
Therefore, I'll continue on with the fun, easy things that aren't so depressing. After our meeting, we went to the (tiny) cafeteria and then back to the floor to receive her chemo. (We were so thankful that they arranged for her to get this there; therefore saving us from going back to NYC.) Next, we located the Ronald McDonald House about 13 blocks away in a horrible section of the city. Shayne parked the van and we all walked up to the gate, literally stepping around homeless people. My children have really never seen mental illness before and we do not typically see any homeless people in New York. I'm sure we will educate them about it soon though. Anyway, I rang the buzzer at the gate as Shayne said, "What are you doing?" I said, "At $15.00 a night, we're going in just to check it out! Where are we going to find a hotel for $15.00 a night for probably two months? We're not." We were buzzed in through both security gates and I explained that we would probably be coming to stay with them for 6-8 weeks beginning in late October and could I please have a tour. A volunteer gave me a tour while Shayne and the girls played in a play area off of the kitchen.
The Ronald McDonald House of Philadelphia is the VERY FIRST Ronald McDonald House! It is a GORGEOUS MANSION! Sooooooooooooooo different from NYC's house that we've fallen in love with! It was very small, very clean and very quiet. (Very different!!) We all four really liked it. The girls said, "Can we come stay here sometime?" Shayne and I exchanged looks and he replied, "Sure. Why not." (Smile) The majority of the rooms share a bathroom; however, there is a newer section that is more like hotel rooms and that have their own bathrooms. (We're hoping we get one of those. With two children, I think it's really needed. Don't they know how long Shayla loves to play in the bathtub and how often Christi gets up in the middle of the night?!) There are no TVs in the rooms and there is one small common living room. Unlike the house in NYC, parents only usually reside here as these kids are typically inpatient and not sent back to Ronald at night. Due to MSKCC's space crunch almost everything is outpatient - something we've fallen in love with (avoiding hospital stays!). Also, this house has a small exercise room which I was pleased to see and hope to use. Once in the van Shayne said, "Angela, I'm so glad you had the nerve to ring that bell and go in. The house is great." Thanks, Shayne and since we can't afford anything else, I'm glad it's okay. I also inquired about parking since we know what that can cost. (We thank God every day for Rick helping us out with parking in NYC! What a Saint!! He and his pocketbook will be to be thrilled to learn we're leaving NY!!!! We will never be able to repay him nor thank him enough for his generosity!!) Happy I was to learn that they have a secured parking area behind this Philly Ronald house - for free!! That will really help since I'm not sure if walking is a good way to get to the hospital and the city bus stop looked pretty "rough".
We arrived back at home about 2:00 AM on Saturday. The girls played with Buttercup, who was very loving and calm and we made predictions about how many kittens she had in her tummy and when she would have them. She barely had a bulge around her tummy so you can imagine my shock and complete surprise when just eight hours later, Buttercup was in her box and I thought it looked like she was starting to deliver. I was so excited I ran to wake up Shayne - the one who drove and who didn't sleep on the way home like the rest of us. Just that soon, Christi came walking downstairs. The three of us stood there, in absolute amazement, as we watched Buttercup deliver her kitten and the kitten then drink milk. "This is precious." said Christi. And it was. Again we felt like this was another sign from above. Buttercup knew to wait until Christi was home to have her kitten. (And yes, just ONE! So sorry to the two buyers she had lined up and soooooooooooooooo thankful as we told her she could keep one before the Buttercup goes to see Dr. Jamie to get "fixed".) Christi immediately called her Grandma Nee Nee, Doug and Caroline and her teacher Anne Marie. She was so happy and excited. She tried to call a few others including State Representative Wagner who gave her the kitty, but was not able to get ahold of anyone else to share her joy. Caroline later teased, "Only the Thomas Family cat would deliver her kitten in a book box." How true. We love to read. Currently, Christi and I are reading Sarah Plain and Tall in the mornings and James and the Giant Peach at night. (We couldn't decide which one to start first, so we started them both.)
So happy to be home, on Sunday my Mother came over. While she played games with Christi, Shayne and I finally had a chance to talk about our meeting with Dr. Maris at CHOP. We decided that if we could get someone to give Christi her chemotherapy here at home, then we would do that and try to live normal lives here for the next nine weeks and not return to NYC for the low dose chemo that she'll remain on to hopefully keep her disease steady until she can get in for MIBG treatment. Christi has been expressing to us that she really wants to go to second grade. She just wants to be a normal kid and we're going to try as hard as we can to allow that to happen. Therefore, Shayne is finalizing the arrangements for the chemo and blood work (They'll fly back to NY for any tests/scans needed) and I am getting my classroom ready to return to start teaching next week. What? Did I just see that in writing?! My does that look fabulous!!! I've sooooooooooooooo missed teaching as it has been a HUGE part of my life and a tremendous personal joy for the past 14 years. Ahhhhhhhhhhhhhhhh, this is going to be GREAT!! "Oh Praise the Lord, for He has listened to my pleadings! He is my strength, my shield from every danger. I trusted in Him and He helped me. Joy rises in my heart until I burst out in songs of praise to him." (Psalm 28:6-7)
The killer for me was that my school district had hired a wonderful sub to teach for me when I was not able to this year. (I never, ever thought I'd be back to teach until all of this came about - about 48 hours ago.) Regardless, this very sweet individual is a FABULOUS gentlemen and a great teacher I'm positive!! He had worked very hard in the classroom and it was just nine days before the start of school when he was notified (this morning) that I'd be back to teach all of the first nine weeks and then he'd start subbing the second nine weeks. Oh you have no idea how terrible I feel. He has taught for our school district for two years. The Superintendent told me that he'd be the first sub they'd call and that he would be needed to sub every day. He also told me that knowing this wonderful individual, he'd just be happy that Christi was well enough to return to school for a while. Of course I agreed. (His wife even offered to have her long, beautiful hair cut for "Locks of Love" for Christi to get a wig last year, but Christi was too young and we knew she didn't mind being bald. Anyway, an amazing couple, so sweet! It was so hard for me to call and talk with him but I really wanted to do that. When he answered and I said, "This is the last person you'd like to be talking to." He said, "Hi Angela." Oh, I had to pick my heart up off of the floor; I feel horrible!). It's wild how good news is always twinged with bad too. People are so helpful in the most trying of times. We've been so blessed as we've witnessed these kind acts over and over despite this horror of childhood cancer we live in every day.
So as I finish this entry, I'm also putting the final touches on the kindergarten parent meeting agenda. Tomorrow the wonderful individual who will be teaching at least for the second nine weeks and probably much much more and I will meet the precious youngsters and their parents as we get ready to explore the exciting world together of Kindergarten next week. "Kinder-garden. Where everyone blooms!!"
Here is my post to our NB listserv following the posts regarding the black out in NYC:
Sorry to inconvenience so many, but ya see The Thomas Team rule is for the last one out to always turn out the lights. Apparently, that's what happened. Christi just finished her chemo at MSK and then we drove out of NYC bound for CHOP on Thursday afternoon. Many of you know MSKCC's fabulous teacher - Anne Marie. Christi called her this morning and we learned that she was stuck in a subway in total darkness for six hours. (Four hours in the train car and two hours of walking in tunnels to get out. Ugh! The most horrific experience of her life she said.) As one might expect, she's still shaken about it. Our thoughts and prayers were certainly with you all during that most trying of times. We were so glad we had just left the Ronald House and we were totally clueless until our arrival in a city with full power - Philadelphia. Truly, we didn't sleep very well in our air-conditioned hotel room because we kept worrying about all of our NYC friends back in NY. As always, best wishes to and prayers for you all!
By the way, our meeting with Dr. Maris at CHOP went very well. The place seemed incredibly quiet, calm and relaxing after treating at MSKCC for the past eight months. They also gave Christi her final day (#10) of Irinotecan so that we didn't have to attempt to drive back into NYC like we had planneddue to the power situation. Christi is scheduled for the double-infusion MIBG high dose therapy in late October, we shall continue marching along with Irinotecan until then. Eight hours after arriving at home in Ohio, we watched Christi's beloved cat delivered a kitten. (Perfect timing!) Steffi - I almost hooked up the webcam and asked for your assistance if needed. (Figured you do anything for an NB kid's pet that also had a mass removed last year. Smile.)
God bless, Thomas Team Mom - Angela Thomas (6 year old Christi's Mommy) NB-IV refractory disease, dx. 9/11/02, still striving to reach NED a first time.
Here's another post (and a heroic story!) from a fellow NB Mommy: My son Matt was Dr. La Quaglia's surgery patient for the day but thankfully he closed up right before the outage. It was quite a circus here. The doctor's actually carried Matt down 5 flight of stairs, while of course being on a ventilator and all the other garb! The power outage wasn't too alarming to us-since we are from California and during the summer we have brown outs. I am thankful that the hospitals back up generators were working and especially thankful that my son wasn't quite in the elevator yet. Sincerely, Debbie H.
With love and hope,
P.S. It's "Sara" if it's a girl and "Pongo" if the kitten is a boy.
PSS: She's sooooo excited about starting school. She found her desk today while she and Shayla "helped" me work in the kindergarten room and she is currently writing a poem for her teacher. Her beautiful teacher used to be an awesome baby-sitter for Christi and Shayla. Christi said, "She won't give night-flights, nor play Blues Clues in school as the teacher though." No, Christi, she won't but I know you'll be in the best of hands. Kristin was a fantastic baby-sitter!! While she was in college and student teaching in our building, she'd help us out by caring for the girls when needed. I LOVE when a sitter walks in the door with a bag full of "activities and plans" for the girls and of course I love it when the sitter ignores me - trying to instruct them with rules and directions, and instead gets down on the floor and engages my kids in interactive play. I know they can't get any better care than that!! And that's the kind of teacher this young woman is as well. Christi will have a great first nine weeks and hopefully she'll tolerate the chemo pretty well and won't be too sick. It's hard to go to school when you feel like you have the flu for weeks, but knowing Christi she'll "suck it up" and make the best of her days there at the wonderful S.E. Republic Elementary School! Go, Tigers! Thank you all!!
Christi's Joke: Why did the turtle cross the road? Because it was the chicken's day off.
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Shayne & Angela Thomas: firstname.lastname@example.org