Journal Entry


Friday, July 4, 2003

When I pray, I speak to God. When I study, God speaks to me.

I read the above many months ago while walking past a church or a synagogue here in New York and jotted it down. Last weekend it again caught my eye while flipping through some notebooks. Therefore, armed with a Bible, I went off to the hospital each day with Christi this week for her treatments.

Last Thursday, Shayne and Shayla flew to Chicago for the 2nd annual Neuroblastoma Conference. It was really tough on Christi saying good-bye to Daddy. Even though it was only going to be three and a half days without him, she was blinking away tears and asked him to push her stroller as far to the hospital as he possibly could before he had to catch a taxi to the airport. Once at the hospital, our sweet and most fabulous nurse could not get her six vials of blood drawn from her IV. She couldn't get any - despite the best of efforts. I did not want Christi to have to get stuck in the arm AGAIN, so I refused - knowing the rights of parents. Well, I had to have the importance of research labs and this Phase One study explained to me by a supervisor and I was asked to reconsider. I thought that Shayne too would politely explain that Christi hates needles more than anything and how difficult the morning already was saying good-bye to Daddy and that I promised her I would not let them stick her again, so I again refused to let them stick her to get the six vials of blood out for research labs. I really felt horrible, knowing how important the research is, but I just couldn't let them do it to her. The treatment is horribly painful in itself without having to do all of that before it too. Hopefully, next Thursday - when they again draw research labs, everything will work better with her IV.

Last week, we spoke with Dr. Chung (The big guru here and one of the NB Chicago conference speakers). He basically said that by the second round the antibody treatment, the antibodies have done all they're going to do and there most likely will be no further improvement when we get her test results. He said we should be pleased she's stable, pain-free and hasn't progressed. He also mentioned the possibility of Iriontecan (Sounds like a tropical bird, doesn't it?!) for her next treatment. We were really hoping to continue antibodies. They're painful, but when it's over she has a really great quality of life - unlike chemo. (Iriontecan is a newer chemo drug that is often used in relapse cases to maintain a child and hold the disease steady.) Dr. Chung suggested maybe going on it low dose (high would be too toxic for Christi with all she's been through) and for a longer period of time - like 14 days instead of 5. I know they're discussing Christi so it will be interesting to hear what is finally recommended when the test results are in. I absolutely dread the idea of doing more chemo. None of the front line agents worked on her bone marrow before, so why go there? Personally, I also hate the idea of her beautiful hair - just now really starting to sprout, falling out all over AGAIN. It's coming in a lot darker, which I've heard is common after chemo and I find I cringe every time someone comments on her hair, knowing it's all going to fall out again with another treatment before long.

This week I introduced myself to a newly diagnosed family starting here. (They sort of stand out: scared "deer in the headlights" looks, clutching films brought from another hospital and a child still bearing a full head of hair clinging to Mom and Dad - terrified. Definitely easy to spot!) While my heart breaks for them knowing they'll now live every day in fear of losing their precious child, I wanted to help them be less afraid and to let them know that other parents here will be helpful. (I failed to mention that we were far from a success story, but we're trying!!) I also shared the fabulous NB listserv with them. I can't imagine trying to fight this beast without the daily posts on the email listserv we subscribe to. Even though I rarely post, I always read everything and cheer with the successes and mourn with the many setbacks of these kids fighting NB around the world.

We'll see how long Shayne's shins hold out on the pavement, but he's been running with Christi in her jogging stroller at night a few times. She's such an inspiration to him yelling, "Faster, Daddy!!" I LOVE to see the big smile on her face. So glad the rain has finally subsided and we're able to enjoy nice evenings outside. (Also glad that New York City's longest heat wave since 1988 is over. How did we managed to get that AND the blizzard in our time here? smile. hee hee!)

Friday night we were blessed with two tickets to see Swan Lake performed by the American Ballet Theater at the Metropolitan Opera House at Lincoln Center on the West Side! Yipeeeee!!!! When I brought the two tickets up to our room and showed them to Christi, she looked at them and asked, "Does $90.00 plus $90.00 equal $180.00?) I said, "yes." She responded back with, "That is a lot of money we don't have. That was really nice of them." Yes, it was! I wrote them a thank you letter and enclosed a picture of Christi in her ballet costume from last year. Thank you, A.B.T. for allowing some Ronald kids the chance to have a very enjoyable evening of ballet!! And what a stunning and breathtaking ballet it was!!! I've never seen anything like it. Christi was captivated and recognized the music from the live orchestra. I borrowed a booster seat and she sat up on her knees totally enthralled with the entire production. Prior to the show, I read the synopsis to her. She compared it to the Swan Princess. She also said there is probably a video of Swan Lake at one of the New York libraries and we should borrow it so Daddy could enjoy it too. She added, "He loves the ballet!" I then told her that yes, Daddy loves the ballet and he even took me to Cleveland to see the ballet for our one year wedding anniversary many years ago. (She likes to hear stories we share of "long ago", even though they don't seem so "long ago" to Shayne and I!!) At intermission, I thought it was getting late so I said it was time to leave. She immediately looked distraught and said, "Mommy!!! It's not over yet! We have to find out how it ends!!" I agreed to stay. When approximately 30 dancing (swans) ballerinas showed up on the stage after Odette danced, Christi said, "It looks like they cloned her." I whispered back, "No talking during a performance." but I was laughing on the inside. She was right! Their timing and precision was perfect! After getting out of the taxi at Ronald we went to see if Winnie was in to thank her for letting us know about the tickets. She immediately asked Christi, "Did you like it?" Christi was beaming from ear to ear and mimicking her said with tremendous enthusiasm, "Did I like it??? I LOVED IT!!!!!" and then went skipping off to push the elevator button. Winnie told me there may be tickets next week too. YES!!!!!!

Before we went to the ballet, Ronald provided transportation and activities at Central Park. I knew Christi's treatment had worn off when she immediately climbed to the top of a rock pile and yelled, "I love Central Park!". I was glad she was feeling well, but quickly wondering how I was going to get her down since I was wearing a dress for the ballet and Shayne was hundreds of miles away! Praise God that our favorite NYPD Officer (and Ronald volunteer) was there and he climbed up to save her. She also played baseball with him and with an airline pilot that volunteers here as well. I had a chance to chat with my friend, Karen (Robyn's Mum) and I met a Mom and daughter from Utah. Her daughter, Courtney, is doing some long-term survival studies here at MSKCC. (Courtney had NB when she was three, became NED, relapsed - like nearly every NB kid does, when she was 12 and is now NED again and 16 years old. Praise the Lord!!! She's beautiful and an inspiration to all of us still fighting.) It was fabulous to see Christi so happy playing ball in Central Park. We then caught a cab to Lincoln Center for the ballet.

Earlier in the week, I stood in line in the Ronald lobby to sign Christi and I up to go to Hershey Amusement Park in Pennsylvania while Shayne and Shayla were in Chicago at the NB conference. I set the alarm clock for 7:15AM and went to bed late Friday night. I was awake when the 7:00 phone call came in. It was the fabulous Ronald staff member, Rich. I told him we were excited and then said, "We're leaving at 8:00 right?" He said, "No, the bus is loaded and we're leaving at 7:00." Oh no!!! I said, "We'll be right there!!" I still can't believe I had the time wrong, and I am so thankful he called our room! "If one falls down, his friend can help him up." (Ecclesiastes 4:10) Thank you, Rich!! (Christi never would have let me live that one down!)

It was about a three hour (each way) bus trip, but those wonderful Ronald folks had everything so well planned. They brought videos and breakfast for the ride and gave us cold water when we arrived. I read a book that was recently sent to me from cover to cover. (Thanks, Richard and Suzanne C.) Ronald arranged for all of the kids to receive VIP cards which allowed them to go to the front of the lines in order to avoid the heat. Christi and I had a blast and I'm so thankful she wasn't one in a wheel chair that day. She was feeling fabulous!! Christi is all smiles at an amusement park and oh so brave. I was feeling bad that our Canadian friend, Jon W., was not able to the amusement park because he was recovering from another one of Dr. LaQualia's very successful surgeries (saved his adrenal gland and got all of this new nasty tumor out - Praise the Lord!!!!!!) So Christi and I brought him back a cute Hershey tee shirt and some Hershey candy for his parents here at the hospital. Jon's surgery was about eight hours long and I am thrilled for the great results. This guy has been through so much and is the nicest most polite young man!!! You can visit his web site in Christi's Clubhouse.

Oh how I missed Shayla and Shayne during the three and a half days they were gone!!! I sent Shayne about six emails the first day he was gone. Well, to receive an email from Shayne is a very rare occurrence so to wake up early Friday morning and see that Shayne responded to four of my six emails and even sent one of his own with the subject line: "Good morning! I love you!!" I was ecstatic! Shayne first wrote:

Everything went great. Good flight, expensive cabs. perfect weather for a walk to the Navy pier. Children's museum free for cosi. Shayla loved it. Pizza was good. Saw Hammers. Spoke with epidemiologist. Big study done on causes of neuroblastoma more tomorrow but basically we got really unlucky. hundreds of causes probably genetic, environment etc. too many to ever tell. write more later. yours

Later he wrote:
big big hotel. Very nice though. wish you were here. great view of city. room 1264. very art deco decorating. I told Shayla that your favorite building was the odd couple apartments. she said it looked like a corn cob. funny

Shayne found the 2nd annual Neuroblastoma Conference in Chicago to be an enriching experience. In many ways it is not an easy conference to go to (emotionally), however, the timing could not have been better. Since we are going into an uncertain phase in our treatment we needed to survey the available treatments and this was a great way to do that. Shayne was impressed with the knowledge level attained by many of the parents. To have the biggest doctors in neuroblastoma all at one conference was amazing. Everyone is trying to squash this nasty disease and to save these kids. One of the many hurdles in fighting this disease is that the incidence is so rare that the large pharmaceutical companies do not have an economic incentive to fund research. Treatments are developed from research grants; however, the drugs are often "orphans" with no company willing to take on production. As we start to run out of treatment options, it is disheartening to know that some trials are not getting opened because the investigators are not able to round up the necessary dollars or even find someone to manufacture the drug.

On Monday Christi's blood counts were also wonderful!! Normal range in all three categories!! (How nice to be off of chemo for so long.) White-4.7, Hgb.-12, Plateletes-234. Praise the Lord!!!

Drinking the "yicky stuff" went pretty well before her CT scan this time. (Thank you, Christi! I'm sorry you have to do all of this.) Wednesday's CT Scan indicates that her tumor has remained stable and there is no evidence of progressive disease. With this wicked disease, things can rapidly change - even during treatment we've seen kids we thought were doing well, suddenly progress. Thank you, Lord for no new tumors at this time!!!!!!! "Let us lift up our hearts and our hands to God in heaven." (Lamentations 3:41) We pray that the MIBG scan, bone marrow tests and urine markers show that the 3rd and 4th round of antibodies helped her disease decrease like the first and second rounds did. Thank you, MSKCC for your 3F8 treatment!! (This is the only place in the world where you can get it.)

On Tuesday evening, Shayla's preschool had a summer party for the students and their families. We had a very nice time and it was great to meet some other parents. There were many activities and games for the children. Christi especially liked the face painting where she requested to be made into a frog. After the party, Shayne took Christi back to Ronald and I went with Shayla to her friend's apartment for a couple of hours and thoroughly enjoyed chatting with her absolutely wonderful mother. When we got back it was very late and I barely washed off Christi's green face thinking, "I'll do a better job in the morning. We're all exhausted." Well, I forgot that in the morning, she had to drink her CT contrast which she has vomited in the past so I told myself not to worry about her dirty green face; it was more important to drink the contrast than to upset her by scrubbing her face clean. Boy did we have fun with this one!! From the receptionist who greets us each morning and asks the typical questions of "fever? cough? rash?" determining if a child goes into isolation or not, to the nurse practioniors, to parents and even Dr. Chung - she fooled them all!! Being pale-green they thought she was ill. What a hoot!!! I'm still laughing!! It's amazing what thrills me these days. I got the biggest laugh out of watching these concerned individuals faces as their eyes focused in on Christi's greenish face before I blurted out, "She had her face painted like a frog last night. It was a great preschool party. Too bad you missed it!!"

Shayne and Shayla went with her friend and her father on Wednesday to the Bronx Zoo. They had a great time. Thanks Steve. Shayne found it interesting to spend time in one of the other boroughs of this great city. He brought home salami (Christi's preferred source of protein) and fresh bread from an Italian deli in the Italian Village of the Bronx. We're trying to keep little Shayla's life as normal as possible under such abnormal conditions. Play dates with a preschool friend seem to give her her own life. Despite the fact how dramatically changed our life is, she always seems so very, very happy. (Of course she has Shayne's awesome personality so that shouldn't really surprise me.)

Treatment this week included her daily injection of the mouse antibodies. While causing excruciating pain (The parents are told it is like experiencing the pain childbirth every day for these kids.) Christi still amazes me with what a trooper she is. She's in horrible pain and yet tries to apologize for screaming at me to get the oxygen closer or to not talk so loud to the nurses, etc. After she yells at me for something she'll say, "I'm sorry Mommy. I just hurt so bad." It breaks my heart. It's so much pain to handle, yet she copes with it amazingly well. I must say that I would not handle that intense nerve pain every day in such a nice, polite manner like she does. I fully believe now (now that our fourth and final round of this is over) that the narcotics do nothing for the pain. They simply put her mind in a state to help her not to remember the pain so she will come back the next day. (Of course that's my opinion. The medical community believes the dilaudid does lessen pain.) Dr. Pat continues to work with Christi and I continue to be amazed with her persistence and perseverance. She's a gem!

Yesterday, two wonderful, brilliant and compassionate employees of the Metropolitan Museum of Art treated our family to a private workshop - just for us. Carolyn and Nitza often teach Shayla's "Start with Art" class. They are so talented and they have bestowed our family with love and support since we first met them in February. Many times they've offered to have us come over for a private tour of the museum's secret treasures, etc. but it's never worked out. In preparation for Christi's upcoming wish trip, they suggested doing a "program" on Japanese art. It was FANTASTIC!!! We all learned so much in just a couple of hours from these fine women. Thank you, Nitza and Carolyn!! We love you!! Look out Japan - here we come!! (smile)

Last week we received a most touching and emotional gift for Christi in the mail. I still have to blink away tears thinking about it. Anyway, a most kind, wonderful stranger, made the beautiful quilt she sent to Christi when she was pregnant. Unfortunately, she had a late miscarriage and her sweet, precious baby stayed with her heavenly Father. Unable to part with the quilt, the mother packed it away. She prayed that someday God would send her a child who needed the love and comfort it represented. When this kind and thoughtful women, read from the web site that Christi's next treatment will most likely be MIBG therapy- in which everything Christi touches, plays with or wears will need to be destroyed due to radiation exposure, she knew that her baby's quilt was meant for Christi even though it would have to be destroyed at the end of the treatment week. Well, Christi LOVES the quilt. (Her picture with it is in the Summer 2003 section.) And if indeed we are off for MIBG treatment, we will allow Christi to take the precious homemade quilt and know that there is a very special guardian angel baby watching over Christi.

New in Christi's Clubhouse, but far from new to neuroblastoma, is Jessica from Minnesota. http://www.caringbridge.org/mn/jessicalynnnielsen I first met Jessica and her mother soon after we arrived in N.Y. Recently, I had the opportunity to talk with Jessica's wonderful Dad about her MIBG experience which was done in Michigan. Praise the Lord that Jessica had about a 75% response with it therefore allowing her to continue on with treatment which led her to a NED status. (Dr. Maris - CHOP big MIBG guru, told Shayne when they exercised together in Chicago that 40% of the kids have some sort of response. Remember - response doesn't mean gone.) We wish this fabulous teenager the very best in forever beating this disease!! She's been through so much. Goooooooooooooooooo, Jessica!! Please remember her and all of these special kids in your prayers. They are so worthy of receiving a miracle!!

In just a bit, I will walk to the subway to go meet a friend for lunch at Grand Central Station. Kristin and I were roommates at Miss Ohio. (Kristin - an awesome singer, was Miss Ohio 1990 / 4th runner up Miss America and is a gem!!) Forever grateful to the Miss Ohio Scholarship Program which fully paid for my Masters Degree, I am even more grateful for the long lasting, wonderful friendships established with the chaperones and contestants. What fun, carefree days those were! Kristin is an opera singer and when Christi was first diagnosed, she told me that her Mother volunteered at Children's and soon sent her Mother in to do music therapy with Christi - even though it wasn't even her floor. Anyway, I can't wait to catch up with Kristin in person!! With her busy performance schedule and my crazy cancer schedule, it just hasn't worked out until now. I'm so thankful she's taking the train into the city so we can visit together today.

Happy Fourth of July!!! Thankful for living is this awesome free country, we will go to the fabulous NYC's fireworks (to be shown live, nationwide on ABC TV) display tonight to celebrate - compliments of Ronald and the NYPD. They are also treating about 100 of us to a BBQ on their NYPD heliport overlooking the East river. Rumor has it is a spectacular display. Wow! We are most grateful!! God bless the USA!!!!! Have a fabulous weekend!!! ENJOY!!!

With love, thanks and peace,
Angela

Christi's Jokes: What has 19 legs and is black and furry? (I don't know, but it's in your hair!!)

Look under there. (Under where?) Ha! Ha! I made you say underwear!

What did the Mother buffalo say to the baby buffalo? Bison! (bye, son!)

What's Next?
In the morning, we will get the van out (Thanks, Rick!) and drive to Allentown, PA where we are meeting our friends, the Bowermans and their awesome four little ones. We are going CAMPING!!! Christi is THRILLED and I am reminding myself it'll be good for the girls even though I'd much prefer a hotel - it WILL be FUN! (smile) The Bowermans are driving about 8 hours and we'll drive about 3 to meet them. This will be a fantastic way to try to forgot about next week's tests. The tension is already thicker than one could imagine. Urine will again be collected for the monthly VMA and VHA markers. (One is always normal, the other is elevated a little bit, but has steadily been coming down with each round of 3F8s.) so we don't feel the VMA/VHA levels are a very accurate measure for Christi but we do it every month anyway. The other tests will be: (Monday) bone marrows by Dr. Kushner (Tuesday) MIBG isotope injection and HAMA test (Wednesday) MIBG scan. Thursday - our flight out of NYC to Tokyo to begin Christi's Make a Wish trip. Whether the tests' results are back or not - we're out of here! I will update one more time before our schedule departure. I will also take my laptop and digital camera with hopes of keeping info. coming from Japan. Thank you everyone!!

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