Journal Entry

Wednesday evening, May 28, 2003

"It's fun to go; it's fun to roam,
but it's always best to come back home."

- Stan and Jan Berenstain's Visit to the City

The above is a saying Shayne and I have often said to the girls when returning from a long day of bike riding, canoeing, hiking or taking a day trip somewhere. Now we realize that the saying couldn't be more true! HOME, even for just over 48 hours, was FABULOUS! Things seem so normal when residing in our own home. I'm glad we made the trip even if only for the weekend. A special thanks to Aunt Marty for coming over to make candy buckeyes with Christi, Shayla and Nee Nee became big buddies again and Shayne drove back through the night in the pouring rain to allow the girls an easier time with the ten hour journey back and to avoid traffic. It all went without a hitch! Thanks, Shayne!! You're amazing!

The churches in New York may be very historic and absolutely breathtaking; however, I've also found them to be cold, dimly lit and filled with people I do not know. I'd trade all of the beautiful, historic churches in New York City for the familiar surroundings and warm, friendly comfort of knowing nearly every person in church at St. Aloysious in Republic any day! This congregation of fabulous people back home has been praying so hard and doing so much for Christi I wanted to be sure to attend mass there when we were back home. I can't even describe the fabulous feeling of being surrounded, in person, by those sweet souls who continue to lift up our whole family! We've been so blessed!!

I shall keep this entry short as I realize my last one probably put you all to sleep! So sorry!! I would say that the majority of the parents here are on some type of medication to help them cope with this ordeal. Feeling the way we do about medication, we've continually refused to do that. I believe that my writing is helping me cope with this situation instead. When I see in black and white all of the goodness of God's world and that I'm not alone in this fight, it really seems to help me deal with it all. Shayne has created a makeshift exercise program he and Shayla do together in our Ronald room to keep him sane. (Shayla loves to sit on his back while he does push ups and since there's not much room, it works out well for both of them. What a hoot!)

We celebrate that our NB friend (Mason) treating in Columbus has made it through transplant and was recently discharged after a long, long, long stay! I understand that Mason's twin - Molly, really missed her twin brother! Yipeee, he's home! We pray that this awesome young gentleman will never need chemo again! Go Mason!!! We love you!

Tuesday's first day back on treatment was a long one. Because of all of the new patients starting and the holiday on Monday, Christi and I had to wait for five hours to get a bed for her treatment to start. She never complained and I thanked the fabulous playroom's volunteers and hired child life staff many times over for entertaining her while I flitted with nervous energy from parent to parent and to the cafeteria and back. Christi is enjoying the cafeteria's turkey sandwiches. She ate two one day and at $4.30 per sandwich - just bread and meat, my next run for her requested sandwich will be down the street a few blocks to the grocery store where I'm sure I can buy a pound of turkey and a loaf of bread for $9.60 and have money left over for a plastic knife to cut it with.

Once our treatment started, Christi was excited to try the new pain management therapy she worked on with Dr. Pat, a psychologist here. Armed with the cassette tape they created about going to the beach at her Grandma Nee Nee's and playing there with her cousins Shelby and Ashley, we were excited to try it. Well, things don't always work out as planned. The pain was so horrendous when I started the tape, she looked at me and whimpered, "Shut it off, Mommy. This hurts too bad." So much for the best of plans, I nodded to the nurse to begin administering the narcotics. A research nurse told me that dilaudid is five times stronger than morphine. Today again we tried the tape, but again she requested that I shut it off. Tomorrow I'll stick with the pain meds!

The "official" MiBG scan report is in and indeed it's the second piece of good news we've received. Praise the Lord!! (The first good news was last month's scan which showed her disease was stable and had actually diminished a little after her first round of this monoclonal antibody/beta glucan treatment.) It appears that they were no longer able to detect any uptake from the MiBG isotope she was injected with in two areas - her right arm and her spine. The MiBG isotope clings to the neuroblastoma cells and this is what we were never able to get in Columbus because of the nationwide shortage. I continue to be amazed that this hospital can get it every week. And I also continue to be amazed that of the $900 scan, my insurance pays just $236 stating the other amount is over and above reasonable and customary. Oh well! We'll deal with that battle later; we've got a bigger much more important one right now - Christi's life! Also, the uptake in other areas (pelvis, femora and thoracic / cardio area indicate that her cancer decreased. (Well, at least for right now. We know how things can change and start growing again even during treatment, especially "experimental" treatment. But we are thrilled with this little tiny step forward.) We praise Him our most high!! "My soul glorifies the Lord and my spirit rejoices in God my Savior." (Luke 1:46-47)

Today, the beautiful Dr. Kramer came into Christi's treatment room and I quickly sent Christi away with the awesome Child Life Specialist, Jenn. Dr. Kramer handed me the official report of the bone marrow tests. While we know cancerous cells do remain undetected, they were not able to locate any neuroblastoma cells in three of the four sites sampled. In the fourth site "many" NB cells were detected. (Remember bm testing is like fishing in the ocean.) So, yipee! Yipee! Praise to our great Lord for this miracle in progress!! We're going to stay glued to our knees forever, but right now I'm busy bouncing up and down with joy that for the first time ever since 9/11/02 this girl's got not just one, but three "clean" bone marrow aspirations! I'm shocked and so thankful for MSKCC's antibody treatment!! The bone marrow biopsies will not be in until next week. (Last month one was negative and the other had less than 5% of NB cells so I'm hopeful they will both be clear this time.) This good bone marrow test news and good MiBG scan news will allow me to better cope with her tremendous pain during tomorrow's treatment. When I think "this has to be working" it's easier to watch her suffer - that sounds pretty sick, but I really hate the idea of putting her through this pain if it's all for nothing. So this testing news is so much better after hearing a few months ago that she has virtually no chance of survival. Of course, recently when Shayne pushed the doc to see if the MiBG scan was possibly read wrong or something the oncologist replied, "Well, you do know another name for nuclear medicine don't you? UNCLEAR medicine." Ha ha! Well, anyway, I'm going to take "encouraging" as the most positive thing I can hear from this brilliant doctor and go with it!! It gives me hope and makes it easier to sleep at night. I know we're far, far, far from a cure, but this little shiny piece of good news will keep us marching on in this battle.

Recently, we met a new family here in person. (We'd been in contact via the wonderful Internet before.) They're from Michigan and their darling son is just five days younger than Christi. Check out his awesome web site at Simon's Mom was asking me what Protocol Christi was on and I updated her that Christi had not responded to COG's #3891 nor the beginning of MSKCC's N8 therefore we were taken off and put on the "fly by the seat of your pants" protocol and we are just shooting from the hips now. She was humored, but as a Mom who's son completed standard protocol treatment and still has disease she quickly responded, "Ah, yes! We've been on the "fly by the seat of your pants" protocol for fourteen months now too." (50% of the kids completing their neuroblastoma treatment will relapse within the first year and 80% will relapse within five years. This evil disease is a beast!) Simon is also on this new Phase One 3F8/beta glucan study like Christi. So glad I am that we're here! I fully believe that if we would have stayed in Columbus, since they had no other treatment options available, Christi would have been slam dunked into transplant with disease as they suggested and ultimately she would have been in a palliative / hospice care situation very, very soon. I thank God every single day that Shayne researched and questioned and found this place and that we are here. The families we've met here are educated and have money. (So why are we here??!! GOOD QUESTION! But without a doubt, I really believe that God led Shayne to do the research to get Christi here and a cure is in His plans for His child.)

What really makes me think this is this experimental trial that Christi's on had been waiting for YEARS for FDA approval. Isn't it interesting that it just opened two weeks before Christi was enrolled? And for two cycles now it appears to be working on her when standard treatment had failed miserably. Right now there is quite a waiting list to get on and I've heard that they now have their 24 kids for the study lined up. (Whew! She made it!) Also, within the past month, all other institutions attempting to do the monoclonal antibodies on their kids, have had them shut down until further notice due to administration problems. Many parents are trying to get their kids in here as their only other hope; many have already been shut out. (And I can't imagine doing antibodies any other place. They created them and have successfully administered them here for 15 years. It is so intense and these nurses are so skilled in administering them. I know it's a challenge; I'm sweating with them just sitting beside Christi's bed but they do it so successfully! It's really impressive!!) When Shayne was calling oncologists across the country immediately after Christi's 9/11/02 diagnosis, he asked Dr. Kushner (a total stranger back then - little did I know I'd soon trust my daughter's life to his care) if we would be able to come to MSKCC for antibody therapy as an "add on" to her protocol if we didn't treat with New York originally. He responded that they take care of their own kids first and if there's space available for kids who want to add antibodies on when they're NED, then they see what they can do. Now that every other place is shut down this would not have even been an option. The saying, "You had to go there!" certainly doesn't apply to this great hospital! Boy am I glad to now officially be one of "their kids" getting this antibody treatment despite the fact it's so painful I believe it's working. Thank you, Lord!

One of Christi's little playmates here and a very talented artist too, return to the hospital using a walker recently. A short while back I was talking with her Mom who told me she thought they were going to have to amputate her daughter's leg. That's exactly what happened. Life will never ever be normal for us again. We've seen too much. Yet, we have experienced more life then we could have imagined. We have extended our family to reach both sides of the globe. We have learned to let go of the trivial things and hold on to each and every moment we are granted, but it's still hard to watch this beautiful little girl deal with the harsh realities of cancer dished out to her. Life is so unfair for these sweet precious children. Someone suggest a few months ago that our angel children have it made - they earn their wings and sail into heaven without question. That may be true, but in my mind disease and premature death are an insult to life.

Recently, there was a lot of excitement around here. A film crew from England came and followed the Brooks family around for DAYS! They are making a documentary for TV about Robyn's life. How cool!! We've learned that in England, they don't treat relapsed NB patients saying it's terminal. Thank God, the Brooks family refused to accept this and visited three hospitals in the USA before deciding on MSKCC. It's very, very expensive for foreigners coming here. Currently, these families are having to put up over $200,000 in cash before they can even be seen here. I can't fathom trying to get together that kind of money. Thankfully, we live in the good old USA! I'm happy to report that this sweet, precious child, Robyn, has been through transplant and is doing well. Scans, which are so hard on this cutie, are this week. We pray for shiny, clean scans. We've fallen in love with this wonderful family.

With donated prom dresses now residing in closets at Ronald's, the great Ronald Tuesday night volunteers held a "Twilight Prom Night" here. How nice to have the opportunity to get out those beautiful, fancy dresses again!! And thanks to a bridal salon for donating beautiful little tiaras for all of the little girls - they looked and felt like real princesses! Christi wasn't feeling so well because of her treatment that day, but Shayla was the "Bell of the Ball" - definitely following in her father's footsteps as Prom King/Queen!! Shayla and I danced the night away to the Chicken Dance, Hokey Pokey, Macarena, Limbo, etc., etc. A highlight was Shayla leading the congo line around the living room here at the house. A volunteer wanted her to take the centerpiece, which I declined -where would I put it in our room?! but he told me that they were talking and Shayla definitely captured the magic of the evening. That's an understatement!!

This morning I was greeted by one of the fabulous playroom volunteers asking if Shayne was with me because he wanted Shayne's autograph. I must have looked puzzled, so he went on to tell me that he saw Shayne on ABC's New York Channel 7 a few nights ago. Wow! Geoff then proceeded to tell the other volunteers in the room that Shayne very eloquently spoke about the volunteers and how they keep our family going through tough times and that they don't have to be here doing this for the kids, but they do it out of their hearts - making a world of difference to the families. I was up in our room with Christi, who wasn't have the best of days, when the news crew was here at Ronald so I had no idea Shayne was interviewed and filmed like that. I wish I would have seen it myself, but nevertheless, it was nice of Geoff to share it with me this morning. How cool! Shayne on New York TV!

The dreaded question came that I knew sometime soon would be asked. Christi asked, "When is Bible School, Mom?" I knew it would be hard on her since she's asked about it so much this year and we thought she'd be well by now and she would be going back to that awesome place in Attica she's loved year after year. I told her very matter of factly, "Christi, we wanted it to work out so that you could go on your break; however, it's scheduled the same exact week as your last week of treatment so you cannot go until next year." I knew she was really, really disappointed, but she didn't cry in front of me. She sings those great songs from Bible School all of the time. It's so cute to hear her little voice.

Oops! I said I would keep this short; I'd better close! Happy belated Memorial Day to our fallen heroes. Thank you for our freedom!! The flags in our hearts are proudly waving. God bless you and God bless America!!

Lots of love,

Christi's Joke: Why does a flamingo stand on one leg? (Because it would fall down if it pulled it up!) Learned from her Grandma Nonee.

Christi's Quote: Be happy with what God gave you. (This is what I looked down and heard my daughter tell me after she overheard me complaining to another Mom in the hospital's playroom about my curly hair being even curlier because of the day's rain. The fabulous volunteer Christi was playing with hugged her and told her that she likes how she thinks. I immediately quit complaining.)

What's Next? More 3F8 treatment the rest of this week and then next week too.