Tuesday, November 4, 2003
~ Into My Heart ~
You tiptoed right into my heart;
by Garnett Ann Schultz
The above poem is for our sweet little, lively and talkative Shayla - back at home. We dearly miss her!! After speaking with my Mom last night I learned she went to preschool just fine (much different from last year when we abandoned her to go make our other daughter really sick with treatment and little Shayla refused to go to school). I think being four instead of three really helps; I'm thankful she appears to be happy. We love you, Shayla!!!! We'll get you as soon as it's safe!! You're going to love your new Ronald House here in Philly!!! (No, not Findlay! I wish!)
Here's the email I sent to my family and close friends early Monday morning: Greetings from the country's fourth largest metropolitan area and from the world's very first "House that Love Built" - The Ronald McDonald House of Philadelphia!! I didn't want anyone to worry so here goes: We were blessed with safe, uneventful travel yesterday. (Thanks for your countless prayers!) I drove the first 250 miles and Shayne drove the last 250 miles. 9 1/2 hours later we arrived. As always, Christi was a good sport cracking jokes and having us all participate in different word and language play games that she made up as we rolled along. Of course we stopped for ice cream too! And Christi drew, did some activity books and watched one of our family's favorite movies "The Santa Clause" as we all laughed and made the best of the journey. We're most thankful to still be fighting when sadly we know some of you here have not been as fortunate. Thanks for your continued support, thoughts and love as I can't even begin to imagine how hard it is knowing you've traveled this same exact road with your little ones without good results. We love and thank you and know your sweet, beautiful little Angels are watching over you from above!!
Christi absolutely LOVES this "home". She took me on a tour of this gorgeous mansion built in the 1880s and I would have been lost without her tour guide skills. (Harriet of COSI - you've trained her well!) This home is very, very different from NYC. From the FREE parking garage with plenty of spaces to our room is less than two minutes!! It's also very, very small, yet appears to be classy and clean here. 9:00 is quiet time when all of the TVs are shut off and a security guard walks around the turns out the lights. (How do we know? Yes, you guessed it! We got sent back to our room just as Christi was putting in a video in a TV lounge last night. Oops! hee hee) Rent is $100 per week. / $400 per month. Christi and I enjoyed working on her Hello Kitty latch hook rug (Thanks, Doug and Caroline) and all three of us worked on some key-chain beading she received as a bingo prize at her last wonderful hospital. She's still sleeping peacefully as I type and looks very, very good.
We'll be leaving for her 9:00 PET scan in a bit and then today's the day she'll get admitted. I'm petrified of course, yet I'm very pleased that she's currently experiencing no pain from this beast of a beast. She's now been off of chemo for 25 days and to be pain free without chemo as some of you NB parents and sweet NB Angel parents I'm emailing here know is quite a pleasant surprise. Supposedly, there is a 20% chance that she will have a response to this internal radiation. And of course "response" doesn't mean free from disease, but we pray that that is indeed the case.
Since sending off that email yesterday morning, beautiful Angel Madison's sweet, sweet Mommy from Arizona called me here to talk and to give me tips of where to eat, get coffee, etc., etc. It was the sweetest thing knowing all she is currently trying to deal with herself and yet my friend is trying to help me get through this attempt at treatment. We've been so blessed! After speaking with Laura, we went to the hospital.
As soon as Christi's name was called, a mother walked up to me and said, "Hi! I'm Shannen from the listserv." Oh what a treat to actually meet in person folks we email with as we try to support each other and try to win this battle over NB with our kids. Please keep sweet Cierra in your prayers as she's going through a very tough time. This little gal is absolutely darling. Visit her site by clicking here. I can't wait until princess Cierra's feeling better as I'm sure she and Christi will be good friends. I had hoped to come back and visit with them at Ronald, but when I arrived here last night I was simply too exhausted and crashed before quiet time. Later in the day I got to visit a bit with Liz and Alex (from Alex's Lemonade Stand). Due to technology, I really feel like I know these people as we email and share our treatments, plans and worries with each other and know they know exactly what we are feeling.
Christi weighed 24.7 kg. (approximately 55 pounds - you go girl!! Amazing!!) and also grew in height now up to 123.5 cm! (48 1/2 inches approx.) Yipeeee!! I thought she seemed bigger, really! Then we left CHOP for the University of Penn Hospital. It's probably best not to get me started on our experience there, but briefly - the PET scan (which of course Christi made MANY jokes about CAT scans and PET scans wondering if they thought she was a dog owner too, etc., etc.) was running hours behind. It was a gorgeous day, but Christi didn't want to go out and explore she wanted me to work on this Hello Kitty latch hook rug Doug and Caroline sent her (Her first latch hook rug. She's doing great!) and to read to her. (Her books were still out in the van waiting for her admittance into the hospital so I grabbed a lame attempt at literature from the hospital and read a Baby-sitter's Club book to Christi which she loved and Shayne and I kept cringing at her thinking that the Ben Franklin books our awesome 4th grade teacher packed for her were waiting in the van.)
So f-i-n-a-l-l-y, she gets her injection of the radioactive material and now she has to be perfectly still for one hour as the radiation will cling to areas of activity. Yes, keeping Christi still would be a challenge. Again I read that awful book to pass the time thinking of all of the great books we had packed for the week. Finally, it was time for her PET scan - again having to be still for nearly an hour.
Next it was back to the hospital where Christi was admitted after dinner time. No wonder this hospital was ranked #1 by US News and World Report in 2003 and by many other rankers. It is gorgeous, absolutely incredible!!! And the oncology floor, where Christi will be, just opened in August. It's brand spanking new!! The private rooms are huge and wonderful!! I was surprised that they don't have VCRs in the rooms, only DVD players. (They have plenty for us to borrow I was told when with panic I stared in shock at the nurse giving the tour. This kid has to be in bed for days! I need entertainment!!) Christi was happy in the playroom and we left her there to go with the nurse to get our instructions. (She's six, feeling well, no IVs yet, etc. Never dreamed there would be a problem. oops!) As the nurse was explaining to Shayne and I that if we wear our own shoes into Christi's room they will probably be confiscated and destroyed as radioactive waste, and teaching us how to literally step in and out of Christi's room and to go to the radiation monitors the first thing out to scan our hands and see if we're radioactive, etc. here comes Christi walking down the hall calming saying, "I think my port fell out." Oh my! Yes, she was right - not the port, but the needle and cords and tubes that get inserted into her chest fell out. I can't believe she made that long walk and actually found us all by herself!!! Later when I went to take her back I had to ask at a nurses station, "Where is the playroom?" as I couldn't find it! Those awesome Columbus COSI explorers have a new little explorer ready for employment I believe!!
Things turned ugly as the nurse stuck her again and couldn't get a return - indicating a clot had formed. Come to find out the technician over at the adult hospital didn't flush Christi's "tubies" with heparin and it clotted. Oh, unbelievable! Absolutely unbelievable!! Other attempts were made, but with no success. Dr. Maris was consulted via telephone.
When I left last night, Christi was ice skating all over the slippery floor in her room. (The floor along with all counters, bed, handles, tables, couch, etc., etc. are all covered with plastic wrap. I'm not kidding, really!) Christi was drawing out her ice skater moves on paper and taping them to the wall and putting on shows for me. It was great as she skated for me. And it'll be just "great" when I put on my required foot covers today and land on my bottom because the nurse told me it gets really slippery with the booties on the caregivers' feet. And after her great performance, I came back to Ronald last night and saw a sign that there were complimentary tickets to watch Kristi Yamaguchi (sp?) skate here in Philly on Thursday night. Shayne and I loved watching the Olympics the year of this awesome ice skater and again is another reason why it was easy to select "Christi" for our daughter's name. (And of course Christine from Phantom of the Opera helped too.) There's basically no chance that Christi will be out of the hospital by Thursday night, but stranger things have happened so it's my goal!!
Before I left the hospital the sweet nurse shared with me Dr. Maris' plan regarding the clot in the port. This morning when she goes into the operating room, they will attempt to manipulate it. It'll be fabulous if they're successful, but it's not likely. If that's not the case, they will put in a temporary pic line just for this MIBG treatment. Then later she will need to again get put under and again get yet another port inserted into her chest to support her blood and platelet transfusions she's going to need as well as the next MIBG treatment. You can't even imagine how ticked off I am that her line wasn't flushed. I joked with the nurse at CHOP, "I certainly hope I don't get billed for the PET scan after all of this." (It's the newest in technology and is typically around $9,000!!!) I'm trying to keep my insurance costs down as Christi is now well over half a million dollars and my policy maxes out at one million dollars. And one PET scan is quite a hit, not to mention the TWO MIBG scans she had to have last week. (typically those are just under $1,000 not to mention the $3,000 isotope injection involved.) Yikes!
So I rested well and I hope that Christi and Shayne did too last night. I'm not even going to proofread this entry as I want to drive over to the hospital before she goes into the O.R. for the Foley Cathedar placement. The MIBG is to be injected about 1:00 PM today. I wanted to let you know that we are just fine and appreciate your love, prayers and support more than you could possibly know. Keep shaking those pom poms! We love you! Happy Election Day 2003! Get out and vote!
The Thomas Team Mom, Angela
PS: Thanks to Mrs. Bumb for the fabulous Christi Thomas picture poster that hangs outside of Christi's hospital room - from ceiling to floor! It's beautiful and you would have been laughing hysterically at me trying to jump up to get the top to stick to the wall last night. There's no awesome Mr. Mason here to bring me a ladder and all of the chairs had wheels!!
Christi's Joke: What's brown and hairy and wears sunglasses? (A coconut on vacation.)
What's Next? About 1:00 PM the MIBG injection will be administered over about two hours. Her IV fluids will continue to run for morphine and fluids until she's discharged. She'll be discharged when she's only emitting a safe level of radiation. The magic number is "7"! Go, Christi!
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Shayne & Angela Thomas: firstname.lastname@example.org