Journal Entry


Friday morning, March 14, 2003

A woman is like a tea bag.
You never know how strong it is
Until it's in hot water.

~~Eleanor Roosevelt

I know our toughest part of this journey is yet to come; however, surviving this recent hot water of the "Chicken Pox Situation" allowed me to ponder the fact that we're probably going to be strong enough to deal with other items that will yet be dished out to us throughout this ordeal. Thank you Lord for giving us strength to endure each day! I must admit that there are mornings when I think I can't possibly open my eyes and face yet another draining day, but hope and faith allow me to muster the courage to do so. (And of course one of the girls crawling on top of me to say, "It's morning time, look!!" doesn't really give me an option either - hee hee.) Both of our princesses were able to escape coming down with the pox. Thank you for your mercy, dear Lord!!!!! We are singing Your praises! Once again the Thomas Team will be reunited very, very soon. We're very anxious and joyous about our homecoming even if it is only back to the Ronald McDonald House!

Christi will be discharged some time today! (Yessssssssssssssss, Christ!) She spent 7 nights in the hospital and received 4 blood and platelet transfusions. (Thank you to Chi Chi's father. She received his blood yesterday! New Yorkers are wonderful and do not deserve the bad rap they receive!! Thanks to our new friend, Dennis!!) Her ANC remained at zero for what seemed to be an unbelievable 11 days. I seriously contemplated whether she'd really ever get released. We loved the private room on the adult floor, but she was not permitted to step out due to a possible chicken pox exposure. We really missed the fantastic, staffed playroom and all of it's activities on the pediatric floor. However, the adults on the floor were WONDERFUL!!! Some even brought her gifts and treats! The nurses were awesome and told us that they only get a child every few months, so it was a treat for them. (I don't know about a treat, but as usual it was definitely the loudest and liveliness room on the floor.) For the most part Christi's spirits were GREAT and our trying times were keeping her entertained! With very few mouth sores and nausea that soon subsided, she ate very, very well! She had us supplementing her 4-5 meal orders from the hospital each day with grocery store runs. I'm thankful a grocery store is just a few blocks away from the hospital as I hate to leave her in a "New York City Hospital" by herself even for that short time, but have no other option.

Her triple dose "G" injections were almost unbearable. They're given after chemo until she gets an ANC. (Christi's will continue receiving them due to attempting to harvest stem cells beginning Monday.) While the injection is painful for her, what is jaw-clenching for me is having to endure the sometimes over an hour process she and Shayne go through during this time. It's tense to say the very least. This shot is needed to raise her blood counts and due to the grave nature of her extreme low counts for so long, the amount of medicine being injected into her little body was tripled. Her skinny arms were simply not able to accept that amount of medicine so it was injected into her legs each day. (She has a strong preference for her arms. Sorry, honey. Keep eating!) She would get herself so scared and so worked up; yet Shayne would never force it without her being in control and giving her permission (SHE says - "1,2,3") to inject her once she calms herself down. One night it was so bad I had to hug (if that's what you'd call it. hmm.......) her tight from behind to keep her from wiggling out of reach and to keep her from grabbing the needle screaming, "I'm scared, Daddy!" at the last minute like she had been doing. I would say that I don't know how Shayne can possibly manage the calm, supportive, patient manner he always demonstrates with her during this dreaded time of day; however, like everything in this process - you don't have a choice. Many have told us that they could not do it, well the fact remains that yes - most of them could. One has absolutely no choice. You do it for your child. Period.

Before living in New York City I could not understand why so many New Yorkers would think that Central Park is such a great place. Now that we've been living "amongst the concrete" for almost 12 weeks and seeing very little green, I fully understand why the New Yorkers love their great Central Park!! Shayla and Shayne spent the afternoon there playing together on Sunday. It was the perfect reunion for Father and Daughter.

Sunday evening the wonderful, former COSI Explorer turned New Yorker, Krista, entertained Shayla so that Shayne and I could catch up on the past ten days. (Thank you, Krista!!) We sat in Christi's room for a couple of hours and tried to update each other on what had occurred with each child during our mandatary separation, as well as other business matters that we were in the midst of. I was planning to head back and to have Shayne stay with Christi; however, after discussing the fact that an Upper East side woman was abducted and last seen right outside the hospital last week, I got nervous. Therefore, Shayne went back so I wouldn't have to go outside in the dark. I was just starting to really feel safe here in the city too. Such a sad and tragic event. (Now it appears that she probably knew the abductor so I feel better - yet my heart breaks for her husband and children. The beautiful woman's fliers are posted all over this area.)

On Monday, my awesome friend Becky arrived to help out!! Yipeeeeeeeeeeeeeeeeeeee! What a Godsend!! She's heading to the airport as I type this update and I miss her already!! Shayla's really sleeping late. (Becky wore her out - hee hee!) Becky has been the best friend anyone could ever ask for since I was 5 years old. Any time in my life that I've ever desperately needed a fantastic friend, she's always been there - saying and doing the perfect thing. (And of course she's always there when I'm not desperate, too! Smile) Christi enjoyed hearing the stories and antics we told her about our younger days. Shayne was even chiming in as Shayla slept in her stroller out in the hospital hallway late one night.

Becky, Shayla and I took the city by storm in two days of probably the fastest sight-seeing tour ever of New York. Basically, it was the "blind leading the blind" (smile), but we saw: Trinity Church, WTC site, Wall Street, where George Washington signed the Oath of Office, American Stock Exchange, New York Stock Exchange, Smithsonian Museum of the American Indian, the bull, Battery Park, Times Square, Toys R Us, Rockefeller Center, Morning Shows, Radio City, St. Pat's Cathedral, Sax Fifth Avenue, Macy's, Empire State Building, main New York Public Library, Grand Central Station, the Pokemon Store, the Lion King and fed probably every dog that Shayla spied on the Upper East Side! (Definitely Shayla's thrill of the day - feeding the doggies!!) We also saw the United Nations as we literally flew past it in our taxi ride home late last night. Wow! It looked like TV stations from all over were set up outside with all of their vans as the big decisions are being made this week inside. This week it felt fabulous to get out and walk all over and to chat with Becky. Both of the girls thoroughly enjoyed the time she spent with each of them. She did weaving with Christi and made cookies with Shayla, etc., etc., etc..

She sent Shayne, Shayla and I off to the Metropolitan Museum of Art so that we could spend some catch up time together (This inpatient stuff is tough!) and so that Shayla could attend "Start with Art" for children 3-7 on Wednesday. (She LOVED it! Loved it so much in fact she took Becky back for a different session again on Thursday afternoon.) A free art program for preschoolers - definitely right up my alley! A true joy! It is very similar to "Wee Ones Wednesdays" and "First Saturdays" that we used to take the girls to at the Columbus Museum of Art before this cancer thing took over our lives. Shayla thoroughly enjoyed the armor court and she took some pictures of it. (After the girls' visit to the Cleveland Museum of Art last August, they came home and wrapped their Barbies and plastic horses in foil to create their own armored court!! What a hoot!!) Shayla also found an artist sketching and sat beside her. The woman was an absolute delight! She gave Shayla some paper and a pencil and listened to Shayla while together they drew the bears sculpture. (Shayla played on a nearly identical bears sculpture by the same artist in Central Park on Sunday so to attempt to sketch it three days later was a thrill.) We told Christi about the free program (which we've called "Shayla's Art Class" and she wants Shayla to take her to her art class at the museum today at 3:30. If she's "Freed from Jail" - oh I mean the hospital, we will definitely do just that!) Becky gave Christi her copy of From the Mixed Up Files of Mrs. Basil E. Frankweiler since it takes place in the Metropolitan Museum of Art. Christi read the first chapter to Shayne and I that night. I looked at Shayne and said, "She's five. This book has a 6th grade reading level. While she didn't get every word correct, she was fluent. I later looked it up and saw that the reading level is 6th grade, 8th month. God has blessed her with an incredible mind. I think perhaps she could help me attempt to read some of these medical research articles I try to read and discuss with Shayne!! (smile)

Many major events have happened since our Dec. 29th arrival in New York: elevated terror alert, the blizzard, Broadway musicians strike, and now it appears that we're on the eve of war. That being the case, when I ordered Christi's meal last night (All meals are ordered room service style by telephoning the order in at the hospital; it's awesome!!!!) I asked for a cheeseburger and "freedom" fries. There was a long pause on the other end before the person entering Christi's order realized that I couldn't bring myself to ask for French fries because of their position. I had to chuckle with her and then I shared a comment my husband, Shayne, read in an editorial in the Wall Street Journal this week. ("Going to war without the French is like going hunting without an accordion.") While I chuckle and try to make light of this horrendous situation, I pray for peace and for our dedicated and fabulous military all over the world making huge sacrifices for our safety. Our social worker made a great analogy to us recently comparing fighting cancer to living with the treat of terrorism. This woman, Diane, is a sharp cookie and really puts a lot into perspective for us.

The week I reflected on the fact that exactly six months ago we received the stunning blow that Christi had a tumor and that it had spread throughout her body. Ironically, the wonderful Becky was our very first nurse once we were admitted in Tiffin back in September - not having any idea of what would be disclosed in two days. Becky also put in Christi's very first IV - something now a "staple" in her life as her central line is always in her chest. Becky sat with Christi during a platelet transfusion this week and tried for an hour to give Christi the "G" injection for Shayne. (Sorry, Becky! No one can say she's not a fighter! hee hee We love you). Anyway, it's amazing how our lives were forever changed just six months ago. As a result, I will always have different perspectives and a different outlook on what's important in life and what I'm thankful for. Nothing will ever be the same.

Much love, thanks and appreciation,
Angela

WHAT'S NEXT?
Monday, Tuesday, Wednesday, possibly up to five days next week they will attempt to harvest her stem cells. We pray that they're cancer free and that they're plentiful this time. (Dr. Kushner - who we learned rides a fold up bicycle to work every day, told us to be prepared that she may not be able to harvest and if that is the case, our options are gravely limited. She needs stem cells for a possible MiBG rescue after tentative therapy in Philly and a hopeful stem cell transplant back here - IF her bone marrow will clear of the nasty cancer.) We also pray that they indeed are able to use her Broviac - central line, for the stem cell collection. That is the way that they harvest here and we are T-H-R-I-L-L-E-D!!! In Columbus, when she harvested for three long days in December, they sedated her to insert a catheter into her groin and thigh area. It was extremely painful for her; we had to push her in a wheelchair and each night she woke up to find her sheets filled with blood. She still has a great deal of bruising on her body from that process. Sloan doesn't typically have a problem using the Broviac. If they do, they'll need to resort back to Columbus' style, but we pray for success with her normal central line. The team came and checked her line this week and said it should be fine. Monday, the 17th there is also a HUGE St. Patrick's Day parade just four blocks from us. I'm hoping the "Irish" members of our family (Shayne and Shayla, hee hee) will walk down and catch the parade while I'm with Christi at the hospital. I can just see myself painting shamrocks on Shayla's cheeks and giving her a St. Patty's day sign to wave!!!

Thursday and Friday: CT scan, bone scan, MiBG scan, bone marrow testing. While truly a miracle, we pray for clean, cancer free scans and cancer free bone marrow testing!!!!! (Please join us in prayer. Thank you!)

Monday, the 24th: Meet with the surgical team, review scans that are back

Tuesday, March 25th, Surgery date, with recovery the rest of the week.

After that - it all depends on the testing results. We're praying for the miracle of normal results! We believe and find great comfort in knowing that miracles do happen and hoping that Christi is granted one. We only need to look to Utah to see the beautiful child, Elizabeth Smart, reunited with her family this week to know that miraculous things do happen through prayer to our loving Lord. Thanks for everything you guys! We love and appreciate you more than you'll ever know! God's blessings to you all! Take care!

Christi's Joke: Why did the cookie go to the hospital? (She felt crummy.)

Christi's Quote:
Always do your best.

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