Journal Entry

January 17, 2003

When we come to the end
of all the light that we know,
And when we are about to step off
into the darkness,
Faith is knowing
one of two things will happen.
There will be something solid in the darkness
for you to stand on,
Or you will be taught how to fly.
-Attributed to Edward Teller, physicist

On Sunday, at church I prayed for a sign that things were going to be okay for Christi now that we've come to New York. That day she was really tired and unable to get out of bed the entire day. Sunday evening she watched a video I borrowed - James and the Giant Peach. I was preoccupied with other things and then about half way through it, I finally sat in bed beside her to watch the movie. I started watching right where the characters were flying into New York. One character said something like, "New York!! That's where dreams come true!!" I thanked God for the sign and knew that had to be it. It does feel great to be here. I know the odds are against us, but I've heard parent after parent say that coming to this hospital saved their child's life. I hope it's true for Christi too!

Monday she was full of energy. We rolled down to the hospital in the morning for routine blood work and her check up and returned about 4PM We'll do that every M/W/F. The blood work came back with her ANC is 200. (Anything under 500 is dangerously low.) Her MIBG scan test results weren't the news we had hoped to hear. She did "light up all over." A large amount of tumor cells remain in her spine, ribs, pelvis, femurs, anywhere where there is bone marrow - she is contaminated. He said what was normal was that her primary site (around the heart/spine) has shown significant response, but what is abnormal is that the marrow still contains heavy involvement. He said that this could mean that the disease is progressive. (Truly one of our biggest fears. Progressive means that it's continuing to take over and not responding to treatment.)

I was just crushed and very soon after that ran into the wonderful Sara H. - a fabulous lady from Minnesota that I started emailing with as we were making the final plans to come here. As she will tell you, with God's help and transferring her son's care here, his life was saved! Her beautiful son was given a 10% chance and has responded so very well here in NY. He also had over 90% bone marrow involvement. Fighting back tears, I told her about the test results. She reassured me that this new chemo hasn't had a chance to work yet and that this new stuff will really give it the punch it needs to clear Christi's body. She gave me the same positive attitude and spirit she always has through her emails and I think God put her there for me to run into as I was totally blown away at that time and really feeling numb as I left the examination room. Sara's been so wonderful! She has introduced me to some other Moms - including three teachers who have NB in their kids too and are all from out of state also getting treated here! They've been fighting this about a year longer than we have.) Sara and her son are only here this week, but I'm glad I finally got to meet her and her precious little boy. I'll miss her when she leaves until she's back next month. Please keep Daniel and his family in your prayers. If you'd like to visit his web site it is:

Tuesday morning I woke up early and went down to this fitness center to work out. I've put on so many pounds and have lost any body mass I had, so it's been great for body and mind to now be able to work out. Shayne's been working out every day. Christi's teacher was at a teachers' workshop so there was no "school" on Monday and Christi was crushed. Tuesday morning, her teacher called and inquired when she'd be coming for lessons. We pushed her stroller down the street in the afternoon and she learned about animal habitation for an hour. It was definitely the best hour of the day!

On Monday, Shayla was supposed to start back to preschool. She wasn't permitted attendance all fall for fear of her bringing something home and contaminating Christi. So Monday was the big day!!! But.......................she refused to go. I couldn't help but wonder if she's associated preschool with abandonment. That's where she was when her life changed forever. She was in preschool as Christi was being transferred to Columbus that day back in September. I went home, packed Shayla's suitcase, dropped it off telling the Principal that my Mom would come and get her later. So I wonder if she's associated preschool with abandonment. Who knows?! Please pray for Shayla. Thank you! My heart breaks for her. Shayne's Mom (Grandma Nee Nee) could not convince her to go. She had to call off of work. Finally, she managed to get Shayla to preschool, but then Shayla wouldn't let Shayne's Mom leave. So, Grandma Nee Nee attended her very first day of preschool! Yippee! (I only wondered if they put her to work. I love when parents come to my kindergarten; however, I have a rule - no free rides! (Smile) I have them roll up their sleeves and I put them to work. Young children can always benefit from more adult hands!! No one has ever complained. They always seem glad to help me. And what a tremendous asset they are!) By day two everything was GRAND! Listed below are two emails from two of the preschool's awesome teachers. One from the first day and one from the second day. On the afternoon of the second day, I called the preschool to see how it was going. The wonderful Mrs. N. reassured me everything was well and I hung up the pay phone as quickly as I could before my tears started to flow. The Principal (and Christi's great teacher last year) and the entire faculty and organization are just too kind! What a blessing and a comfort.

Shayla's first day: I did not see Shayla today but here is the scoop. She refused to come this morning so Grandma called Ann and told that she was having a problem. Grandma decided to take the day off work, then she brought Shayla and stayed at school today with her. She was playing with a little girl and having a good time. When it was the end of class she told Grandma, "We forgot to bring our lunch." We need to remember that Shayla only came to Betty Jane about 4 days so she needs to have some time to readjust. Grandma is great!

Shayla had a great 2nd day today... I'd say she's right back where she left off! Your little angel scolded me 3 times today. I work down the hall in the 4/5 yr. old room and I guess I didn't check on her often enough today (6 times) 'cause she said "Why are you taking so long to see me?!!!" She's so precious. She wasn't too mad at me though 'cause I got a hug every time too. Every time I peeked in, she was doing just great!!! We are really enjoying Shayla and are so glad she's back.

Christi continues to eat. Not as nutritionally as we'd like, but she's eating and that is great! So far no TPNs and we're celebrating that victory! Folks seem really surprised by this, but as Shayne always says, "If there's one thing this family is good at - it's eating!" (hee hee)

Christi concerned herself with Shayne's stolen shoes one day. He reassured her that the person who took them definitely needed them more than he did. She also knew to pray for that person. We haven't had any more problems like that! Don't worry. It's okay! We're warm inside and we're safe! Now we're making friends with other families (Thank you, Sara!) and Christi has been playing with her beautiful new friend who's being treated here from Cleveland - Olivia (8) and her darling little sister who is almost five. It's awesome to see her play with a friend. Riva showed me a grocery store that has better prices. Shayne still had to pay $1.99 for a can of corn that Christi wanted and ate, but the prices are better than the $1.00 per banana we had been paying. It's a different world here!

We're very thankful to have this time together. All summer long I was dreading sending her to school because I knew I'd miss her terribly. Now doing 24/7 with her has given me the extra time I so desired. (Now I'm reading to send her to school full time - hee hee hee!) We're not passively sitting around, but standing strong and fighting! And with God's help, she's going to win! Thank you all for everything! We appreciate it more than you could possibly know!

My thanks of course to Webmaster Eric. Many here in NY have commented that it's the nicest web site for a cancer kid they've ever seen. Thanks, Eric! You do great work and provide a tremendous service to us. It's hard to believe it isn't your day job! Someday I will meet you and your beautiful wife in person!

Love and Misses, Angela

Epilogue: From Shayne

Angela had most of this journal entry written, however, she spent Thursday night in the ER at New York Hospital with possible strep. She is fine but resting and taking antibiotics at the Ronald McDonald house. We felt it best to keep her isolated from Christi because of Christi's Nuetropenia (immunocommprised).

Christi admitted to the hospital on Wed. with a fever. It is rarely over 100.4 but precaution must be taken. She is on several broad spectrum antibiotics. She has not eaten since Wed. due to terrible mouth sores. 10% of her body weight has been lost with no end in site right now. Hopefully, the chemo is working as hard on the cancer as it is on the rest of her.

Christi's attitude is very poor right now. Pain and fatigue are the new routine. Everyone was prepared for the increased toxicity, but, that preparation has not made it any easier. It is expected that this is the bottom for this round but it can not end soon enough.

Angela left Thursday with the expectation she would be back. So I ended up with her life line-the laptop. Anticipating that some would wonder if we did not post I opted to send this entry in draft form.

Editorial: Many people have asked me "How is Angela doing....Really?". I must admit she is the strongest of the team. She does not get down nor let up. This mission would not be possible if it were not for her strength. Admittedly, I am not the easiest person to have on the team. Very little emotional support is directed toward her, most is reserved for the little ones. Consequently, she is forced to pull from her inner strength and the support that all of you continue to provide-Thank you. As a mother she is devastated by this whole matter, but, as a leader she is tenacious and unrelenting in her commitment to do absolutely everything with in her power to make this mission a success. When we began dating (we were 15) and then got married (we were slightly older but young) I could have never guessed the positively unbreakable fabric from which she woven. You just never truly know until you are forced into a situation like this.

Well I must go Christi is calling for more morphine-this just shouldn't be......