Journal Entry

Monday night, December 15, 2003

"In God we trust"

In my last entry I mentioned that Congressman Paul Gilmor's office had contacted the US Mint in Philadelphia - the world's largest mint and we had been granted a 10:30 tour time on Wednesday. (Due to 9/11 public tours are no longer permitted; however, a Congressman can grant something like six individuals per year a standard tour.) Christi and Shayla have a "quarter collection map" at home and when Christi was little we'd give her a bag of coins to have her count in her car seat while we drove to our destination to help her pass the time so we thought the girls would really enjoy this standard tour of the mint and we were certain that we would as well. Well, I had that all wrong, it wasn't a tour but the most FABULOUS, INCREDIBLE once-in-a-lifetime personalized experience typically only shared with Senators and Governors!!! We'd like to thank Congressman Gillmor and Brad from his office as well as all of the wonderful and amazing folks at the mint who rolled out the red carpet for us - for over three hours!!! We are still reminiscing about our family's unbelievable day at the mint and everything we were able to see and do! What a blessing! www.usmint./gov/kids (Eric, please include the link that is on Christi's web site so folks can go to the site. The kids' section is great! Christi's been playing and playing on it when she's at the hospital! very cool!)

The Philadelphia mint produces 40 million coins per day at this remarkable facility. As we arrived Christi asked, "Will we see the whole process of making coins?" Boy, did she. From artist conception all the way to bagging the coins - the girls got to be a part of the process each step of the way. They cold formed dies, pressed coins, inspected them, and saw them to the vault. Our personalized tour guide was the SUPERINTENDENT himself along with a tremendous and beautiful woman named Felicia!!! And so many other important people came over to say hello as we moved along. Unbelievable! We were perhaps the first non-mint employees to see the 2004 Michigan quarter. (It was being produced in a guarded room - and it's gorgeous! You'll see for yourself come January. Michigan - Home of Christi's Wonderful Webmaster!) Christi responded to the Superintendent's question, "What was the most amazing thing you saw today?" with "so many coins being made". Just moments earlier she had said she liked meeting the artists most when Daddy has asked her. When the different answers were pointed out by Shayla, Christi responded, "He asked the most amazing thing, not the most interesting thing." At the end of the special day, they treated us all to Chinese food (Christi's choice) and presented each of our daughters with a HUGE bag of sweet and generous goodies and some very special keepsakes. What a joy! The girls thought Christmas came early!!

Unfortunately for me "Kodak Mom" they called ahead and told us we were not permitted any cameras or bags inside the mint. The sweetest lady that assisted with our tour (Felicia) took many photos; however, they have to be checked by the police and the FBI to see if we are allowed to have them or not. (My fingers are crossed! I know she took some great ones. I hope to hear a good answer soon! Smile!) The highlight of the trip for me was Christi getting to meet the real artists (Check them out on the mint's web site!) in their studio drawing new state coin designs for 2005. (While currently being created on the easel, the Minnesota artist actually guided Shayla and Christi's hands as they drew a few lines on the 2005 Minnesota design - unbelievable!! I'm going to check for their work when the coin comes out in 2005.) But I also loved watching the girls' excitement as they held out their hands while the warm pennies fell right into their palms and they squealed with delight! (Just like warm cookies out of the oven. AHHHHHHHHH!) My biggest concern was that little Shayla (who loves to pick up and collect "things" - anyTHING and everyTHING!) was going to try to lift someTHING (aka "coins") and all of the bells and alarms would go off when we tried to exit the building. Of course we made certain she didn't have any pockets and we were on her the whole time, "You can't take anything out of the mint with you." "It's not like picking up a penny on the street." etc., etc. Thankfully, she was great!

Sadly, this week our Ronald neighbors (who have been here for nearly four months) returned from the hospital telling us their precious son entered the gates of Heaven just after 5PM and they started up to their room to pack up their belongings. I just don't understand why innocent children don't make it and what we're to learn from it all. He would have had the most wonderful parents here on earth. This sweet Mother even stayed up all through the night before Thanksgiving cooking a turkey to give to the homeless on Thanksgiving morning. What a doll! She said it wasn't right that we were here sleeping in soft beds in rooms with heat while others were out in the streets so she wanted to do something for them. (Even though she and I doubled over laughing when she said that one homeless man said to her, "Turkey? I'm tired of turkey!") May God wrap His loving arms around these great folks and give them strength and comfort as no day will again ever be the same without their little guy.

We continue to enjoy our friendship we have developed here at Ronald with a sweet family who's little premature baby - Cole, is fighting so bravely each day at CHOP. The girls play every night with their sweet seven year old daughter, Cali. The Dad is very talented and often brings his guitar down into the kitchen or living room for all of us to sing and listen to. One night while Christi was practicing the national anthem, he even played it on his guitar for her background music - so sweet! Yes, the Star Spangled Banner on guitar! Mom is a very talented artist who has spent time drawing with Christi. Christi continues to draw, write and read a lot every day strongly preferring things to be quiet - not easy when four individuals are all living in one tiny room.

She loves her hospital teacher (Joan) and typically has "school" for about four hours each week yet she talks about her classmates and wonderful teacher at her home school every day longing to be back at her real school she grew so fond of in such a short time this fall. I'm thankful that Joan is teaching Christi at her own level. Last week she called me aside and told me that she had put Christi in all of her 3rd grade books because she mastered everything at the second grade level, but she had put stickers over the fronts of the books that said "Grade Three" so that Christi wouldn't think she was being pushed. What she didn't realize was that Christi had already noticed in small type at the bottom of each workbook page "grade three" the weekend before while doing her homework and Christi was beaming to think that her teacher thought she could do 3rd grade work giving her those shiny, new books. God has really blessed her with an incredible little mind. I still remain convinced that with her incredible little mind she could find a cure for this wicked beast living inside her if only given the chance to live long enough to discover the cure.

I found I couldn't sleep on Thursday night as I was so worried about what Christi's blood counts would be on Friday. Friday morning Shayne went to the gym and as soon as he returned Christi and I drove to the hospital while Shayla and Shayne followed on foot. Friday's hospital blood labs showed: white-1.4, Hbg-10.7, platelets-18 (ouch!) with an ANC of 616 (still heading the wrong way! This is getting closer and closer to having no ability to fight any infection or bug.). Dr. Suzi said it was up to me on whether we transfused her platelets or waited until Monday and to watch for fever as well as bruising. I wish Shayne would have been there to consult with, but I think I made the right decision to wait. While Columbus Children's would have transfused Christi at 20 or less, MSKCC in NYC didn't transfuse her platelets until 10 and I knew Monday was only three days away, so I requested to wait. Dr. Suzi believes that her counts are still going down and haven't stabilized yet. When Shayne arrived we had a good discussion with Dr. Suzi. We're continuing to discuss and ponder what to do next, yet things will wait until we test here the end of December which will tell us if her disease is better, worse or the same. Meanwhile, we're very concerned about Christi's low white count and ANC so we're scrubbing hands and keeping in our Ronald room as much as possible - very hard when you have two active little girls, who feel well, in a small amount of space.

While we need to keep Christi isolated now, we also know she's a little girl that needs to live and if this is her time to live so be it................Sunday a big day was planned with two large events for the oncology patients at CHOP. We drove to the airport, checked in at the counter decorated with HUGE candy canes and a balloon arch, went through (real) security - where Shayla's balloons started popping - oops! Not good timing! My heart was pounding!! Then Christi, Shayla and I boarded the "Fantasy Flight" to Rudolph's Gate sponsored by US Airways. Only one parent was allowed to go - and I take the best pictures so that earned me the lucky ticket! Shayne stayed back at the airport, while I sat on an airplane with the girls for 90 minutes - loading the children and then taxing around (thinking - he's drinking complimentary Starbucks and reading the NY Times and I'm sitting on a crowded airplane that's not going anywhere?! hee hee Oh, well I actually counted 31 planes just sitting in a long, long line waiting to take off, yet going no where since so many flights were canceled due to yet another weekend storm which was dumping down on us. It made for the perfect atmosphere.) As I left Shayne to board the plane, I laughed and said, "I bet the girls won't notice you're not even on the plane!" Sure enough, they were so excited they never noticed he wasn't on the plane! (Home Alone III?) So, my saying that we only take Daddy on trips with us to carry our luggage and pay our bills must be true. hee hee! just kidding!! Thank you to US Airways for an incredible Xmas party yesterday morning - clowns, magicians, cotton candy, pizza, hot dogs, games, crafts, toys, Starbucks so, so sweet!! We've been so richly blessed!!!!! (And Shayla thought we were at the North Pole, but Christi said, "I don't think we went anywhere, but this really looks like fun!" when we arrived at the party.) The employees were absolutely incredible!! Tremendous folks who had much better things to do I am certain, yet they created a wonderful magical day for these very special children treating at CHOP. Thanks, US Airways!!!!!

The it was back to the hospital to catch the bus to Reading, PA for the hockey game. Christi had practiced the national anthem all week and was so excited about singing it. Well, the time came. She high 5ed all the players as they walked past her ready to skate out into the rink for the line up. I was a nervous wreck waiting backstage with her, but she was so happy and calm all the way up until they announced it and she walked out onto the carpet (along with three children about 10 years old) with a huge spot light on in a dark arena. She is amazing! Earlier she asked me when she would know when it was time to start and I said, "Just listen for the intro like on Mrs. Willman's practice tape." Well, guess what?! No music! (Oh my!) So I shouted, "Go! Sing! Start!" and the song was sung into the microphone without any background music at all! She did absolutely FANTASTIC!! (No, I'm couldn't be bias!! Smile.) There were 4,327 people at the game and they played the........TOLEDO STORM! (Royals won in overtime.) Can you believe it, Toledo?! So close to home!! But I told the newspaper reporter who interviewed Christi and I, "We may live just an hour from Toledo, but we're Royals fans!" Thanks to the Reading Royals Charity Events for rolling out the red carpet and sponsoring the Oncology Patients from CHOP! (Bus transportation - with Bingo games and videos, dinner, hockey game, cookies with the players, autographs) Unbelievable kindness! The children also were able to participate in "Musical Chairs" (on ice!) during an intermission break. Shayne and I wanted to say, "No, Christi. You can't!" (thinking low platelets - this isn't good!) yet we said, "Be careful." and started praying she wouldn't fall. Many, many times throughout the day we found ourselves giving thanks and praise that Christi is physically doing so well that she is able to fully participate in this very special day, unlike many cancer fighting children. Thank you to the Royals Charities of Reading!!

Other than that, we've been keeping Christi in strict isolation! (smile) Due to the isolation, we now have a TV in our room and have been keeping her here as much as possible - problem is she's six and she's feeling terrific! Confident that she needed platelets this morning, they were already ordered on Friday! This morning's blood counts were Hgb. 8.8, platelets 11 (transfusion needed) white 0.8 (ouch!!) with an ANC of 428 (ugh!!!) So now we know her counts are so low that her immune system doesn't have the capability to fight off an infection or an illness like a normal person would be able to do. We've ventured (as we knew we would) into dangerous territory and we pray that her blood counts start rising immediately. (long shot, but we can pray and hope!)

I've scheduled Shayne to have his hair cut here at the house tonight. (I wasn't that brave even though I'm way past due for a haircut. I'm waiting to get back home when all three of us will go to Cindy's just like in our pre-cancer life.) Christi wants to grow her hair really long like her big cousin Ashley's, however, it really needs a trim. She hasn't had her hair cut since Cindy came to our home after Christi's first chemo round to cut it really short in preparation for it to be burnt away by the chemo - 9/02. What Christi doesn't realize is that I'm 80% sure there is more high dose chemo heading her way and sadly it's all going to fall out again anyway - along with her eyebrows and eyelashes; however, I want her to feel like a special little girl so I will have Cindy give her a trim as soon as we get home. My friend, Becky, made appoints for us this Saturday; however, I'm now thinking that they will probably need to be canceled. With dreadfully low blood counts that Christi now has I can't imagine that we'll be able to head home for a while. We would like Christi to get to go to her wonderful 2nd grade teacher's wedding and to sing with her classmates on Saturday afternoon, but again that may now be out of the question.

While most find themselves busy shopping, sending cards and attending holiday parties in the hustle and bustle of this magical, holy season, I find myself longing to return to that life - a life without constant fear and uncertainty, a life without daily treatment and worry for my family. It's frustrating feeling many of the emotions I go through each day - an emotional roller coaster that many days is nearly overwhelming. I know that envy is not a healthy nor a kind thing, yet I am filled with envy for those with healthy children and wish I could again join those ranks. I wish I could give my healthy children a most wonderful Christmas and to be home baking cookies, making gingerbread houses, decorating a tree, buying gifts, having family Christmas pictures taken, going Christmas caroling, driving through the lights with my Mom at the park in Upper, walking through the Zoo Lights, visiting Santa and doing nice things for those less fortunate during this most holy time before Jesus' birthday. Christi has been asking if she can collect money for the poor when we go home and if we will drive her to the houses to go up and ask for money to give to families who don't have much money. It just broke our hearts knowing how much this six year old learned about compassion and kindness as a result of the life we live and what she's brave enough to do to help others because we believe she knows what others have done to help us. While I wish we weren't experiencing this first hand, it is a blessing and comfort to know that God's people are good. Shayne and I continue to say that every day. (It's been like our theme song throughout this horrendous journey. Smile.)

To end I simply must share a letter Christi wrote and delivered to me after I told her to quit jumping on the bed. (I'm such a nervous wreck about her low platelets. I know that one bump to the head and life-threatening internal bleeding can result and be the end. She's come too far to go down now from something like that! Ugh!) Anyway, she wrote:

Dear Mom,

I am just like you. I do what you do. I make the same mistakes you do. Don't just set this letter down, fold it up and hold onto it. This is what I NEED you to REMEMBER: You treat me bad sometimes. There are no complaints from me. For proof, I will tell you something. Remember when you said, "Bigger isn't better." Well, there you go. I know deep down inside that you just think you are better, but you are not. Believe me or I will use my secret weapon: a sound cannot make me do something. Please think about what I said.

Love, Christi

I waited until I was alone to read what she wrote to me and I'm so glad I did because I roared with laughter when I read it. Then after I got my laughter under control I took it down to the kitchen to let some of the other Moms here at Ronald read it. So cute! What a riot! When Christi was four and would get upset with me she would write "NO ANGILAS ALOD!" (No Angela's Allowed!) draw a stick picture of me with the circle and slash through her drawing of me and tape it to her bedroom door. Then she'd color and draw inside her room for the longest time. Quite frankly, I was always amazed that at just four years old she could write like that to express her frustrations and I thought it was darling. I'm sure I saved every sign like that she posted. I'm glad she continues to express her feelings and can use the "power of the pencil" to help her vent just like her Mommy has learned to do throughout this battle. (Smile!) Thanks for letting me vent here each week. My journal entries have definitely been my way to cope and to help pass the long, dark, often lonely and scary hours. Thanks for all of your continued prayers, love and support! It's truly appreciated! May God bless you all! Happy Holidays!!

Take care,
Thomas Team Mom, Angela

Christ's Jokes: How much water do they drink at the mint? (A quart-er) and What did one horse say to the other horse? (Am I your "neigh"bor?) *Yes, both Christi originals - like you couldn't tell!

What's Next: Even though I am still hanging on to the chance that Christi and I will both be back to our school come January, I have emailed my wonderful Principal and Superintendent requesting that they hire a really good substitute teacher for the first of the year - just in case. I figure if they do, it'll be just like this summer and I'll be back!! (Smile) Seriously, if we are not back like I still am holding on to, I want to be certain that my students are in the best of hands until I can return. We are committed to coming home for Christmas; yet are uncertain of our plans at this time. Hopefully, we'll know more soon. Everything depends on her blood counts which are now nearly rock bottom. If she's going to need to be admitted to the hospital, we need to be here not nine hours away in Ohio.

PRAYER REQUESTS FOR CHRISTI: Our prayer request is that Christi's blood counts quickly recover, she's spared from any infections and that she'll soon be on to her next treatments - whatever they may be. And no matter how far out of the question, we pray that her tests/scans scheduled for the end of the year show N.E.D. for the first time ever. Our new years resolution we set last December was "Cancer Free 2003" so we pray that we finally get that news on December 31st!!

Hemoglobin - red blood cells (11.5-15.5 normal) transfuse 8 or less (Carries oxygen)
Platelets (150-400 normal) transfuse about 15 or less (allows the blood to clot)
white blood cells (normal 5-15) (fights infection)
ANC (normal 1400 - 7400 / under 500 is dangerous) (refers to the strength of her immune system)
(M) October 27th: (one week prior to first MIBG high dose injection)
Hemoglobin 11.7
Platelets 195
white 4.3
ANC 2,200
(T) November 11th: (Day #7 after first MIBG high dose injection)
Hbg. 11.3
Platelets 195
White 3.6
ANC 2,754
(M) November 17th (Day #13)
Hgb. 10.9
Plt. 110
white 4.7
ANC 3,666
(Th.) November 20th (Day #16 & Day #2 after 2nd MIBG high dose injection)
Hgb. 10.5
Plt. 85
white 3.2
ANC 2,336
(M) November 24th (Day #20 & Day #6)
Hgb. 9.7
plt. 46
white 2.5
ANC 2,125
(F) November 28th (Day #24 & Day #10)
Hgb. 8.6
Plt. 24
white 3.4
ANC 2,516
(M) December 1st (Day #27 & Day #13)
Hbg. 7.5 Transfused with whole red blood cells
Plat. 16 Transfused with platelets
white 2.3
ANC 1,936
(F) December 5th (Day #31 & Day #17)
Hgb. 9.8
Plt. 42
white 1.7
ANC 1,105
(M) December 8th (Day #34 & Day #20)
Hbg. 8.1 Transfused with whole red blood cells (Daddy's!)
Plt. 16 Transfused with platelets
White 1.3
ANC 728 (low)
(F) December 12th (Day #38 & 24)
Hgb. 10.7
Plt 18
white 1.4
ANC 618 (very low)
(M) December 15th (Day #41 & 27)
Hgb. 8.8
Plt. 11 transfused
white 0.8 (ouch!)
ANC 428 (ouch!)