Journal Entry


Thursday evening, April 8, 2004

Hope is a thing with feathers
That perches in the soul
And sings a tune without any words
And never stops at all

Emily Dickenson

Becky, my friend, said to take my shoes; however, my Professor said to email her my paper since I won't be in Ohio to attend class next week so I called Angel Flight in desperation. When I put in the request for our flight, I had to register our body weights so I was hoping to work out a plea bargain.If I lose five pounds before the flight, can I be granted five more pounds of luggage? Well, I didn't even have to ask. The luggage rule is 25 pounds PER passenger, not total. Yahoo!! I didn't want to go down, but 25 pounds isn't much when your computer weighs 13 of those limited pounds. So, here we are in the city of brotherly love with shoes and with the laptop. YES! And, after receiving the good news, I tossed in a pair of flip flops for Christi that the Easter bunny brought her since she could live in flip flops every day' she claims.

Tuesday found us at Toledo Metcalf - a very small, lovely airport on the south east side of Toledo. While we waited for our pilot to arrive, we chatted with a business man also waiting for a flight. He saw on the back of Christi's thank you sign she made for her Angel Flight pilot that we were from Tiffin. He told us his hometown was Attica. Oh, we couldn't believe it. "I grew up out in the country, but still call Attica my hometown too," I said. Small world!! So we chatted about the friends/relatives that we both knew back home. (God works in mysterious ways!)

Soon our beautiful pilots arrived. (I had no idea that they flew their plane all the way in from AKRON just to pick us up! What a shock! And what a tremendous act of kindness as it would have been nearly a three hour drive each way on a terrible road - 224 for us to get to Akron.) I was afraid I'd get teary eyed when I first saw them because prior to our trip I teared up any time I even thought about their kindness, but with Christi and Shayla literally jumping around all over the airport unable to contain their giggles and excitement, I was fine as I was in my "giving the girls the evil eye to remind them of their manners" mode instead of thinking of the profoundness of the matter at hand.

The plane was filled with fuel and then we soon loaded up. Christi thought it was so cute that the little luggage space was the perfect size for our things and also that it only had four seats – also perfect for our trip. We crawled up on the wings, climbed in and got buckled up in very comfortable leather seats! Shayla and Shayne looked so beautiful as they stood outside on a gorgeous day waiting for our departure; I had to snap their picture. (Shayla was excited about us leaving because she was going to go to her Grandma's who lives at the Lake and she thought she was going swimming. Happy Birthday tomorrow to Grandma Nee Nee!!) If you've checked out the recent photos on Christi's website, you may have noticed that Shayne's hair has become quite long. He's never had hair this long, but he worked really hard to get it. I don't believe it's been cut for nearly a year as it's about the same length as Christi's. We're not sure what's up with Christi's next steps in treatment and the possibility of more high dose chemo exists so Shayne jokes it'll be more dramatic if he needs to adopt the bald look again if it's long. Regardless, it's really bothering some folks, but we think that's really funny. (We're just talking hair! Oh, I forget most people dont watch with sick stomachs as their little girl's hair all falls out due to chemo, nor would most people even shave their own hair off in that same circumstance perhaps.) Recently, I joked with one individual who tried to give Shayne $10.00 to get his hair cut, "I woke up next to a bald man for nearly a year. I don't want him to ever get his hair cut again." And we've heard more than one person say how he keeps looking younger and younger. Another told me, "He looks like a skateboarder." And he does. (Of course we laugh when we think back to some sweet nurses in NYC who thought he was a professional football player when he was bald and we first arrived in New York. What a hoot!)

Now back to the serious stuff. Our pilots couldn't have been any kinder. It was a gorgeous, nearly three hour, flawless fight for which I'll forever be grateful. Dale fitted Christi and I with headsets which blocked out the noise and allowed us to talk with each other as well as to listen to the "airport / pilot talk" which was really interesting - even if all over my head. (#3341 at northeast 17 thousand feet due south - or something like that) When I asked Dale how long he had been doing this he joked, "About 30 minutes." Immediately, I knew I was going to get along just fine with this sweet couple. Christi soon fell asleep and napped for over an hour while I thought about my beloved, deceased Father who at one point in time took some flying lessons and flew some small planes. I kept pretending he flew down from Heaven and was sitting beside me on the wing; I had a great conversation with him. Just as I closed my eyes and nearly nodded off to sleep, we hit a small pocket of turbulence and I had to laugh thinking it was my Dad and my friend, Becky's Dad - Roger, shaking the wings just to play a little joke on me!! Ya got me, guys!

Every time I heard, "Angel Flight 195 welcome to Youngstown" or whatever airspace we were flying over at the time, I felt myself tear up over and over. I just couldn't (and still can't) fathom the kindness of this tremendous act to help us out. I had first learned about Angel Flight a few years ago by reading a magazine article or something. I associated it with a charity for really sick people needing to go to far away hospitals. Never did I think that one day I'd be in those shoes myself. Well, having a daughter who has racked up extensive medical costs at four hospitals, who doesn't qualify for any treatment in our home state and who has a disease for which there is no known cure, I guess it doesn't get much worse than that - we qualify!

I continued to marvel at the pilots with hearts of gold as we flew. They'll never know how many times I lifted them up in prayer asking God to richly bless them. I also marveled at the Lord's gorgeous country side we were flying over and I snapped a few pictures to share with my class since we have talked about agriculture and landforms in social studies this year. When Christi woke up she nearly read an entire chapter book, played with her Gameboy that the awesome Attica Girl Scouts gave her about one year ago and she munched on a few granola bars. She was very anxious to get to the Ronald McDonald House and had compiled a long list of things we were going to do once we arrived.

Coming in for the landing, I noticed Christi looked a bit green. She told me that she was car sick and did I bring anything in case she really couldn't stop herself. (She ended up being just fine!) The landing was incredibly smooth and soon we were inside a gorgeous small executive airport in Philly waiting for a taxi. We said our goodbyes to true Angels on earth - Dale and Melissa, as I could only think that they were turning right around and making the very long flight back home without even having dinner. (What an exhausting, long day for this lovely couple) THANK YOU, ANGEL FLIGHT!!!!!!!

We were very lucky to even get a room at the Philly Ronald McDonald House. They were at full capacity. Never have I seen this house so full. On the flight, Christi told me, "Some rooms at Ronald are only the size of two dog houses put together." Yes, she's right! But thankful you are to have ANY size room when you could be out looking for a hotel room instead. (Also, I had forgotten that this house isn't in a very nice part of the city and sadly we had to walk around some poor, most likely cold and hungry, homeless people to get inside the gates of the Ronald House. Life is so unfair. Here we are surrounded by love and comfort in the PRMH while others are out on the streets. This really bothers me.) We checked in, found some free food (thank you, PRMH) and Christi set off decorating cookies with some sweet college student volunteers while I engaged a woman from Egypt in conversation. (I was in awe of her beautiful son who reads, speaks and writes both Arabic and English when I can barely read, speak and write in just one language.) I wish this family the very best as they're so terribly far from home while one of their sons is fighting a brain tumor. Christi had taken a long nap on the flight so she was filled with energy. While I unpacked our things, she started writing a story for Shayla. Then we went out to the living room to watch the video of Matilda. I fell asleep on the couch and poor Christi had to wake me up. (oops! There goes that "Mother of the Year" award AGAIN. Hee hee!)

I posted the "hope" poem at the top of this journal entry up by the mirror in our Ronald room as soon as we arrived. I find it is only hope that gets me through these difficult days of testing and waiting. I know fully that these results determine everything. The tension and the anxiety is nearly overwhelming at times. Yesterday, we walked to CHOP before noon; however, it was quite a taxing journey for Christi. I was really saddened as I know that in prior visits she's been able to walk pain free without complaint all the way through the campus of the University of Penn to CHOP. Yesterday, she kept asking me how much farther and commenting on the fact that it would have been nice to have her stroller. Therefore, half way through, we stopped at some food stands and bought fresh fruit and authentic Chinese food. Sitting outside on the beautiful campus sharing our food was very enjoyable, but I couldn't shake the upcoming tests or the dreaded results out of my mind for long. She has made complaints of her right ankle and her right wrist bothering her at times. Of course that sinks my heart and sends my mind on a tailspin!

CHOP continues to impress me!! On Wednesday Christi was able to complete her VMA/VHA urine collection, her CT scan, her MIBG isotope injection and her blood counts all in one day!! (Her blood counts were: 4.4 white, 10.7 hgb., platelets 112 with an ANC of 2,781. These are still low counts, but not too bad and they definitely appear to be stable.) In addition, they had a MIBG cancellation for Friday so they asked if they could give her the isotope injection that day and scan her on Thursday instead of Friday. What?? Finish up her testing in just two days instead of three! You bet!!! I couldn't believe our good fortune!! She did a great job of going without food after drinking her CT scan contrast at noon and not being able to eat until about 5:30PM as we walked out of the hospital. We missed the Ronald McDonald House shuttle by a matter of minutes and the next one wouldn't come by for two hours so I hailed a cab and we were soon back "home".

Upon the arrival in our room, we discovered two sweet, thoughtful angels had sent Easter treats for the girls! Thank you, Karel K. and Tim G. and families. I was exhausted after the hectic and emotionally difficult day, but Christi appeared to be unfazed by the day's events and played with the friend she's made from Egypt. At 10:00 PM we cooked macaroni and cheese and heated up some frozen pizza since she wasn't allowed to eat after midnight due to her bone marrow testing today.

Today, we took the Ronald shuttle to CHOP. Her weight is up a little bit to 25.3 kilos and even though she wants to be 50 inches tall in the worse way, she's still officially a half inch shy of that goal! (Height 125.3 cm) Soon we were out of the clinic and in the care of the wonderful MIBG folks. Christi climbed up on the big table and innocently watched Sponge Bob while I hovered beside the technician in front of the monitor. This is the scan that I "think" I can "Officially - Unofficially" read. (OK, I know I can't but I sure try as I watch the image of her body slowly unfold itself through a series of dots.) I felt that anything new I could easily recognize as progressive disease and from my "Amateur Radiologist chair', I'm 95% certain that she had a clean MIBG scan again today. Even though I could be wrong, I walked with an extra little skip in my step all day. I had worried so much about seeing something "new" light up and I didn't see anything.

So back to the playroom where we waited and waited and waited for Christi's bone marrow tests to take place. Christi never complained once, but I knew she had to be very hungry as it was after 12:30 PM and she still wasn't allowed to eat. After 1:00 they called her to her procedure. She walked in, stuck out her right hand and said, "Hi! I'm Christi Thomas. Who are you?" (I guess that's a six year old's style of checking to make sure that they're really doctors who are going to put her to sleep and put large instruments into her bones to extract her marrow.) Everyone burst into laughter and they told me that she was the best kid all week - no tears, no hesitation, no nonsense. I hovered out in the hallway and prayed that she would wake up from the general anesthesia. Well, hmmm, wake up she did - like a bear!!! It was like Jeckle and Hyde! She was banging her head on the bed and kicking the bars. We couldn't calm her down, but with the help of some morphine and Oreo cookies she seemed to relax. Even though her platelets were 112 yesterday the gauze bandages on her hips are soaked with blood. Again we missed the Ronald shuttle back home. I knew she couldn't walk after that procedure, plus it was raining out side. I carried her out to try to get a taxi when I saw a CHOP shuttle bus and wondered if it was what I've heard some other Ronald families talk about; it was! So we took the employee shuttle bus to within one block of the Ronald House and I just carried her from there. Thank you, Lord!

Back at the Ronald House I unpacked our bag from the day while Christi wrapped a scarf around her head and asked me why Dani wears that over her head. I told her that I thought it was part of the Islamic religion, but that we'd ask her because I didn't understand either. So we did. Then she and Arai played until dinner time.

I don't know what the test results from her bone marrow or urine collections will be; however, I'm heading into this feeling like things will at least be the same - hopefully better than they were when we last tested three months ago. I'm also pleasantly surprised to be heading into this meeting tomorrow, period. At no other institution have we ever been able to get immediate testing results like we can here at CHOP. While the tests themselves are difficult, it's truly the waiting that nearly pushes you over the edge. I'm also most anxious for Shayne and Shayla to arrive tomorrow. I pray that they have a safe, uneventful journey.

In closing, I recently noticed that Eric has updated his "From the Webmaster" section of the website. My deepest thanks go out to Eric for creating and maintaining Christi's website for the Christi Connection. It has been a tremendous asset for our family, friends and Prayer Partners all over the world to keep in touch. It's not that we don't pay Eric because he's worthless, but simply because he is PRICELESS!!! Another HUGE Thomas Team THANK YOU to wonderful Webby!!

With continued love, thanks and gratitude,

Angela

Christi's Joke: What did the hot dog say to the bun? You go ahead. I'll catch up (ketchup).

What's Next? 10:00 AM meeting tomorrow with CHOP's Dr. Suzi. Test results should be in and plans for next steps of treatment should be discussed. We hope to spend the day sightseeing in Philadelphia which will either be a real upper or a real downer depending on the news from the oncologist. Saturday we shall drive three hours down to DC where we intend to spend some time enjoying the city before the Easter egg roll on Monday. We understand that they are calling for rain on Monday in Washington. This would cancel the event.

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