Thursday, April 10, 2003
God never promised
He never said life
To make us feel worthy,
We all received a release last Friday night as that's when Christi was finally discharged. Yipeeeee! I pushed her "home" along with many bags and no gloves in the freezing rain while Shayne kept Shayla at Ronald. (Children under 11 are not permitted at the hospital so it makes inpatient stays very tricky to manage.) I kept stopping to warm my hands and to ask her, "Are you okay, honey?" She was warm and comfy in her plastic wrapped stroller. (Thanks, Grandma Donna!) I need to find some of that plastic covering for me (hee heeee!) Knowing how we love the theatre, the Ronald McDonald House gave Shayne two complimentary tickets to see the New York Philharmonic at Lincoln Center that night. He and Shayla attended to give Christi a break. (Sometimes having both girls in one small room is like adding gasoline to the fire. Smile) Shayne was humored that Shayla kept asking when the dancers and actors were coming on the stage, but that she really enjoyed the awesome orchestra even though the actors never showed up. (hee hee!) I think she's been to one too many theatre productions! (smile) We'll blame it on the wonderful Ritz Theatre! (smile)
Christi was blessed and did not experience the withdrawal symptoms over the weekend that we were warned about from having a week's worth of heavy narcotics in her system. Therefore, Saturday was enjoyed at the Children's Museum of Manhattan (Thanks to Sloan for the free family pass.) and the evening was enjoyed with the girls playing BINGO back at Ronald. Sunday found us heading out for church and resting back in our room for the afternoon and evening. Christi also spent a lot of her time in our room playing a new musical instrument that her music teacher from school sent her. (Thanks, Mrs. H.! You rock! Harp music is much better then drum music on my ears and temperament. THANKS!)
This week her wicked, painful treatment continued each day. The nerve pain is severe. It's so hard to see her in so much pain. I pray that this is working and destroying those chemo resistant cancerous cells! We have to be there early in the morning (around 8:15AM) and are unhooked and back at Ronald about 2:30PM. We're thrilled that the incredible Anne Marie (Christi's fabulous hospital teacher) has been able to work with her a bit before she is sedated. Christi then sleeps for the rest of the day and night only waking to cry with pain and to eat an occasional bite of food. (Christi is happiest when she's working with her teacher so we're happy Anne Marie grabs her for those precious moments of "school" before they start her treatment. Christi's hospital teacher continues to amaze, inspire and enlightening me every single day we get to see her! What a tremendous, one-of-a-kind woman!! She had Christi doing division one day this week. Today she will be studying angles. Amazing! This woman is so remarkable with her motivating, hands-on tutoring sessions.)
Again this week the really intense pain is confined to about 30 minutes of the long treatment period. She's one tough little cookie. I hope this fierce pain means that these cancer cells are all bring slaughtered!! She'll sometimes chant, "I hurt. I hurt. I hurt." and then say, "Sorry, Mommy - but it makes it feel better when I get it out." While we've heard that the kids "don't remember a thing" and they "always come back the next day" we know that Christi remembers EVERYTHING about this painful treatment. Later when she wakes up she'll talk about what happened during the horrific pain (Mom, why didn't you put your hand all the way over mine? Next time don't hold the "blow dryer" so close. Let me see my hives, please. Tomorrow don't talk to the nurse - just look at me. etc., etc.). Many of the nurses have told me that this antibody treatment is hardest on the old kids - like Christi. They typically need the most pain medication and have the hardest time getting through it. She's getting dilaudid for the pain; it's the strongest thing they can give her - stronger than morphine. Again this week the heavy sedation had her coming back to Ronald in the late afternoon and sleeping until morning. It's really taken a toll on her and we pray that this is ridding her bone marrow of the nasty cells. Goooooooooooooooooooooooo, Christi!! What a strong fighter you are!!! We're so proud of you and love you so much!! They said that this weekend she may experience withdrawal symptoms and next week she should feel blah and achy - like she has the flu, but with no outward signs as a result of these two weeks of intense, daily treatments. We're glad that the fevers she did have so far this week were not very high at all!
The following is from an email Shayne sent to our awesome oncologist - Dr. Amanda T. at Children's back in Columbus. We miss her!
As for Christi it is the best of times and the worst of times. No treatment has been as hard on her as this one. During the day she coils up in pain at night she has hives and is miserable. The narcotics do not seem to leave her until the next morning. Her face puffs up like a balloon. The rash on her whole body looks like the worst case of poison ivy that your ever saw. With that said she wakes up and is pristine until treatment starts. On the weekend she was the best she has been for a long time. We are looking forward to time off.
Her counts have been good. ANC 3500, HGB 9.4, PLT 135. He broviac has a small crack in it and is scheduled to be taken out on thursday. We have not had one line infection...Good job Doctor King.
Last week we noticed that Christi's Broviac (central line catheter inserted into her chest in September) had a small crack in the outer cover. We pointed it out to the medical team and many options were discussed over the next few days. Finally, Shayne and I determined it best to surgically remove the Broviac; the team agreed. (Since we don't know what's up with what will happen next in her treatment, she'll just use IVs until a temporary line is needed and put in for something else - whatever that may be. It all depends on this Phase One Study she's on and if her cancer is responding to it.) She will hate the needle sticks; however, we feel it's safer to remove the Broviac - a foreign object from her body, and not to insert another central line of some sort until her future is more certain. She'll also be able to bathe and swim now for the first time in seven and a half months. Ahhhhhhhhhhh! Won't that be great! We've always been so very careful not to let it get wet and to have the risk of infection. We carefully tape it up over her shoulder and bath her rapidly with the water not even reaching the top of her thighs. This line was great - never once an infection, but I credit that to our loving Father in heaven, to Shayne's extreme caution with the daily care and maintenance her performed and to the "Sammy Top" (the sports-like bra with Velcro to hold the tubes up) she wears daily that I discovered on the Internet.
Her surgery for the removal will be done by the great Dr. L. today 1:00 PM - following her antibody treatment. (Ought to be one long day for her! Poor thing! She haven't been able to eat since last night and breakfast is her best meal - often the only meal, of the day.) I pray that all goes well this afternoon. She's really excited about being "free" from her Broviac.
Tuesday evening, Ronald gave Shayne two tickets to see a NY Knicks game. In order to allow Christi a quiet, peaceful atmosphere to sleep at Ronald, Shayla and Shayne went off to the professional basketball game. Shayla just adores her Daddy!!! I agree, he's the BEST!!
Preschool has worked out very, very well for Shayla. It was hard for me to fill out the paperwork listing "Father's Employment" as 'unemployed due to daughter's cancer care' and mine as part time teacher, but they've really accepted her with loving arms and open minds and she's enjoying her three mornings a week there.
Christi will be getting a week's break in her treatment regimen. (YIPEEE!!) This little "Easter break" is to allow her small body to rest up and to heal a bit before getting hit with the 3F8/Beta Glucan Antibodies all over again for two more grueling weeks. Because she's been off of chemo for so long (since February) her blood counts are decent and she isn't transfusion dependent anymore so this is the perfect time for a break to come home. Also, her strength and motor coordination are coming back slowly. We asked her if she wanted to go to Disney World for a few days. (I told her on the day she was diagnosed that she was going to get well and we were going to take her to Disney World - and thanks to the wonderful Tiffin Hampton and great, generous Manager, Donna B. our lodging will be provided. (THANK YOU!!) We also have four free airline tickets with American that we received after taking a bump last summer which expire in June so it looks like this is something we will really be able to pull off.) Well, leave it to Christi......................she said that if she had a few days off she would like to go back to school instead of Disney World. I wonder if her teacher knows that she's better than M-I-C-K-E-Y-M-O-U-S-E in Christi's book. It is not believed that she's strong enough to make it through a full day of school, but we're hoping for three half days before having to return to the hospital here in New York for continued, painful treatment. I hope and pray that they will be a quiet three days and that Christi will feel just like a normal kid again at school. What she continues to tell us over and over is, "I just want to get better so I can go back to school." Well, she isn't better at all, but this will really, really make her happy for her spring break!!
At this point I will finally admit that I'm emotionally drained and physically exhausted as a result of the past seven months of continual bad news, stress and anxiety. I really don't know how much more of this situation I can take. I'm hoping that our quick trip home will allow us to live like a "normal" family for a week and to be recharged to come back here for more punches. Being home for Easter will be a HUGE blessing! We are most thankful and look forward to leaving. I can only imagine all of the things we'll need to take care of at the house since we've been gone for the past four months and really took off without much notice back in December. I know there's a lot we'd like to do, but also know that those precious days will go by so very, very quickly and we're already starting our break exhausted.
Needless to say, our bags are packed and our van will soon be loaded. (If it starts! Smile.) I am blinking back tears thinking how great it will be to sleep in a real bed , to eat in a real kitchen with real silverware and to drive my van!!! Most importantly, to see Christi reunited with her beloved Buttercup and her first grade class - if only for a short time. We appreciate her great principal and teacher letting her do this and hope it does not cause any problem. We know this war is far from over; however, we didn't know if we'd ever get back with her at all so this is sort of like a dream come true! Our prayers and dreams continue to be that this new experimental study is working and that she will one day be cancer free and will get to graduate with her class.
Please remember all of these precious cancer fighters in your prayers. A sweet princess, Robyn from England, has her web site listed in "Christi's Clubhouse". Please visit her site and say a prayer for her family. They've been here since May and they too are continuing to fight neuroblastoma, finances and living here with a second daughter. (And they have the sweetest, most polite accents!!) There is a petition to the British Government they'd also like you to sign to help with finances. Robyn's web site is: http://www.robynbrooks.co.uk and he's also listed on Christi's Clubhouse.
In His love, The Thomas Team
Shayne, Angela, Christi and MacKenzie (Shayla changed her name this week! I guess she was tired of hearing me always say "Shayne + Angela = SHAYLA!!!!)
WHAT'S NEXT? We're heading home for a week! After four months, spring break has arrived and we're out of here for a short time!!!!! HAPPY EASTER!!!!
Christi's Jokes: Why is it hot after a ball game? (Because all of the fans are gone.)
Why don't you play games at the zoo? (It's full of cheetahs!!!)
and I'm always coming, but never come. What am I? (Tomorrow!)
Christi's Quote: "Now I really look like Daddy!!!" (Christi made this comment after feeling the top of her head. Her hair is starting to grow - just like the spring flowers!!!!! And it feels a bit stubbly - like Daddy's!!! I wish I could say that this thrills me and that she was disease free no longer needing treatment and that her hair was growing back. Now all I can say is she won't have any more chemo since it doesn't work so her hair is growing back - and her eyebrows are starting to "sprout" too (really dark!).
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Shayne & Angela Thomas: email@example.com