Journal Entry

Tuesday morning, July 22, 2003

"I miss Japan where they don't shake hands."
said by bowing Christi as she bowed down.

Aloha from the 50th state (beautiful Hawaii) where we FINALLY arrived – better late than never and definitely arrived in less time then the first explorers from Polynesia over 1600 years ago who traveled the open ocean in outrigger canoes!! Mika helped us get to Sapporo and managed the oral communications there. (Thanks, Mika!) She was surprised that we were not flying directly from Sapporo to Honolulu, but we explained that we didn't make the travel arrangements and taught her the English saying of "beggers can't be choosers" - despite the fact we were losing an entire day traveling this way instead. (Little did we know we would actually lose two days because of what lie ahead.)

Also at the Sapporo airport the charming Miyuki arrived to visit with us prior to our departure to Tokyo. So sweet! (It was an hour away from where she had finished working for the day. She, like Mika, really went out of her way to spend a short time with us.) We enjoyed visiting, eating and watching Miyuki and Mika assist the girls with some final origami lessons before we left. Our flight to Tokyo was uneventful and we thought we were soon on our way to Hawaii. The awesome Tomoko and another fabulous Make-a-Wish volunteer were at the Tokyo (Narita) International Airport helping us with our luggage in addition to getting us on the correct bus to the new terminal. (Thank you Make a Wish!! Everything was TERRIFIC!!!!!! Thanks!!) Also, Junko showed up again - just arriving back in Japan from Honolulu. SOOOOOOOOOOOO sweet!! We thought only awesome volunteers existed in America, but apparently that isn't true; they're in Japan too! THANK YOU!! God bless you all!! You've touched our lives in ways you will never know and in ways we will never forget! Thank you to the incredible Angels on Earth: Make-a-Wish!!!!!!!! Christi could not have had a better wish trip!!!!

In Tokyo we went through customs and waited at our gate for our fight - scheduled for FIVE hours later. At this location was a restaurant, children's play area (which the girls went coo coo over building dinosaurs out of blocks for hours) and FINALLY an Internet service area. Inserting yen (Japanese money) to keep the Internet going, we pulled up our email. Due to the costs, we quickly skimmed the 134 messages waiting in our in box since we last checked our email in Tokyo.

Shayne found an email from Gwen telling him that security was too tight for her to be able to see us without an airline ticket, but she made arrangements with Hawaiian Airlines and someone would be waiting for us when we arrived and would breeze us through the check in process and escort us to a private lounge area where we could comfortably wait three hours for our final flight to the Big Island. (How sweet! Thanks, Gwen!!)

The highlight and stunning news of the email was the fabulous news that Christi's surgery is scheduled for THURSDAY, JULY 24th!!!!!!!! Chills literally ran down my body as tears welted up in my eyes. July 24th is my beloved, deceased father's birthday and the Grandpa Vince Christi never met. She was conceived about six weeks after my father died on vacation of a sudden heart attack and something has always made me feel that Christi and Dad have a unique bond even though they never were able to meet in person. I think the two of them would have butted heads a bit (very much alike at times!) but I really believe my wonderful father is our daughter's guardian angel - always protecting and watching out for her. We don't know any more than that, except it appears that they will insert a new central line of some sort into her body while she's under deep anesthesia during the surgery to remove her tumor along her spine and heart. Shayne said to me, "The good news is they must feel now that she may make it, or they wouldn't do this to her." I totally agree with him. I hope our gut feeling is true! It's hard relying only on email.

I quickly replied back to Dr. Kushner and to the scheduling individual for the talented Dr. LaQuaglia that July 24th was the perfect day (being my father's birthday) and we would arrive on Wednesday, July 23rd back in New York. (They emailed that they needed to see her prior to her July 24th surgery.)

I really hope we make it to this scheduled surgery. (She currently has a slight case of the sniffles which we're concerned could possibly delay things.) And I couldn't be any more thrilled to be in NYC where the famed Dr. LaQuaglia will perform it. While other parents have told me that he has his hands blessed every day and says that he just holds the instruments while God does all of the work, I know that the snap decisions that are made in a high risk surgery like Christi's make all the difference. Everything must be precise; there is no room for any error. Thank you Jesus Christ for leading us to New York where this brilliant surgeon will take on Christi's tumor on July 24th - if all goes according to plan. I recently overheard Shayne tell someone that Dr. LaQuaglia is the best pediatric surgeon in the world and I fully believe that and totally entrust Christi's life with his hands and mind. While I did not know that there was any difference between surgeons for a long time, parents and more parents have told us that they would never let another surgeon ever touch their child again. Others come to New York just because of this talented man. He's simply the best in the world. It's the standing joke in New York that Dr. LaQuaglia fixes up everyone else's mistakes and takes on the cases that no other surgeon will even attempt. I can't tell you the number of parents who have said that their children would have lost body parts or wouldn't be alive without this gifted gentleman sharing his God given talents and saving their kids' lives. We pray that Christi's surgery will be complication free, that all of her tumor will be removed and that nothing new will show up once he gets inside her body. I ask all of Christi's tremendous supporters to please pule (Hawaiian for pray) for her and if possible to do something special for her (offer your communion in her honor, light a candle, or whatever your religion leads you to do). Thank you for your unwavering support!! I can't believe this is FINALLY scheduled to happen. I hope it is a huge success and allows us to continue marching on.

Just as soon as that tremendous news about surgery (that Shayne and I had been pushing the NB team to do for so long) had put me on a high, I read the very next email from another NB mom. She sadly informed me that Nick lost his brave and courageous battle with cancer. I was shocked. I mean absolutely stunned!! The very day before we left for Japan he and his brother were lively playing in the playroom. I told his Dad how great he looked and he told me that Nick has more energy than he does. Nick's dad had also prepared me for what to expect if we go to MIBG therapy in Philly. While it did nothing to help stop Nick's disease, I really appreciate his sharing that information. Nick's sweet Mom was the very first person I spoke to when we first arrived in New York with Christi in December. I'll never forget how scared I was and how sweet and kind she was and always has been to me. It's hard to believe we won't have any more waiting room chats. This is so sad. Please join us in prayer for this wonderful family who must really need tremendous strength and comfort at this most difficult time. I am so angry and so sad. This news was gut wrenching and I wish I could do something to ease the pain for them. Heaven grew by gaining an absolutely wonderful child this week. God bless Nick - forever five.

Finally, we boarded the Northwest flight to Honolulu where we are extending Christi's wish trip on our own. "I feel so good right now with surgery again being scheduled, that I think I could float to Hawaii." I actually said to Shayne. I should not have spoken so soon. As the engines and lights soon started turning off and on Shayne joked, "You just may have to do that!" I burst out laughing. While the girls slept (Thank you, Lord!) we sat strapped in our seats out on the tarmac for FOUR hours while the mechanics attempted to fix an engine. Finally, at 1:00 AM they informed us that the flight was cancelled and we'd get new flight information at our hotel. We loaded up our many, many, many bags and carried sleeping sweeties out to get our three pieces of checked baggage, again going through immigration and boarding a bus to check into a hotel for the night. (Did I mention we waited in line each time? Yes, we did, but happy we were that the girls appeared comfortable and asleep for the most part.)

It was an hour and a half bus ride to the hotel they were putting us up at for the evening which really turned out to be a total of six hours after we stood in line to get a room. If we had known that it would be such a distance making for such a short night we never would have left the airport. At the airport, we kept asking if we had to get our bags - such a hassle for just two of us to try to carry everything and manage the girls as well, and if we could sleep at the airport on the floor instead of the hassle of going through customs and dealing with so many things for two of us to carry alone, but the answers were vague and we were basically told that all four hundred people (yes 400 people!) on the flight were to stay together. Arriving at this hotel in the middle of the night, the room was so small that with our luggage we didn't even fit in one room and we needed two rooms just to fit. Shayne tried to get a hold of MSKCC to find out what Christi's next course of treatment would be, but Dr. Kushner was on vacation and Dr. Kramer was out. He also called the travel agency that Make a Wish used to see if we could get a flight re-scheduled on our own while slots were still available, but they were unable to help us. (Very kind, but not able to do anything to assist us.) Therefore, we realized we were stuck and we slept for less than two hours before our little ones woke up wondering if they were in Hawaii, disappointed to learn that the plane was broken and we didn't know when we'd get to Hawaii.

To tell any more about this very long, very boring, and extremely stressful situation would just take up your time and mine. I will say that I thank God for allowing Shayne to keep such a positive wonderful attitude despite all of the disruptions and mainly lack of sleep that was lost. (Shayne and I each slept about five hours total over 48 hours.) I was so tired, had a horrible headache, received "extra" screening at EVERY security check point and couldn't believe we were losing an entire day of our trip, but Shayne smiled so sweetly at me every time I even thought about complaining and he was wearing his Hawaiian shirt singing Hawaiian songs pretending to be in Hawaii - so I was definitely humored and honored to be his wife. When a Japanese person from the hotel boarded our bus to take us back to the airport again and said in his best English translation, "Only the people from the Northwest Flight should be on this bus. Are you all from that cancelled flight last night?" Shayne shouted up to him, "Yes! Can't you tell from the happy smiles on all of our faces?" making the bus erupt with laughter! Oh, how I love this awesome man!! He's simply the best!!

Needless to say, arriving in Hawaii 18 hours late, we were not able to take advantage of all of the special arrangements Gwen had made for us. Instead, we were locked out of the Honolulu Airport (It was 2:00 AM and the airport didn't open back up until 4:00 AM.) so we slept outside on the concrete until 4:00AM when the security guard pounded on the windows and opened the locked door we were sleeping in front of. (For those of you that know what a terrible sleeper I am, you KNOW I was exhausted to be able to sleep outside on the concrete.) At one point Christi joked, "We're like the Wild Thornberry's. They just travel around and don't really live anywhere!" Wild Thornberry's is a cartoon show which I don't approve of, but occasionally Christi and her father will watch this show and we roared with laughter over her analogy.

For a while not knowing what day or time it was (having traveled through five time zones) we arrived at the hotel about 8:30 AM on Saturday. The Hilton Waikola Village, with a $360 million dollar price tag is one of the most expensive resorts ever built. Polynesian opulence defines this awesome property. Spectacular, breathtaking views are enjoyed by all of us from our room's ocean view balcony. There is something indescribable about the calming noise of waves crashing. The resort is carved out of 62 acres of jagged lava rock. Canal boats and trams transport us from pools to lagoons - all over the gigantic property. The girls have enjoyed what I've called "The Cookie Room" each afternoon for free cookies in the executive lounge. I'm so thankful that our frequent hotel points are completely paying for the room costs as we wouldn't be here any other way. (I've learned that the room rates are $450-$750 per night.) After checking in, Christi and I slept for about four hours while Shayne and Shayla took off for one of the many swimming pools here. The remainder of the day was spent swimming. We also borrowed toys from the children's vacation station here at the hotel and Shayla and I played school on the balcony while Christi made plenty of origami inside our room.

Sunday was Christi's big day! Our deepest thanks to DOLPHIN QUEST here in the Hilton Waikola Village for having Christi as their guest to swim with the elegant dolphins. Dolphin Quest – touching hearts and minds

This was an unforgettable experience for all of us. Shayne and Christi went into the waters for Christi's private session while I videoed and Shayla said over and over, "Daddy! Daddy!! I'm over here!" standing behind the fence. Bless her heart! The trainer working with Christi was absolutely wonderful providing a relaxed, educational atmosphere. I was surprised to find out that our brave daughter was actually hesitant during the encounter. (Shayne wasn't; he fed and kissed Lono - the eldest and dominate male of the eight dolphins. Does that surprise anyone?! Hee hee) Christi massaged Lono's tailfins and felt the water spout through his blowhole. Boy did she laugh when he "sneezed" on her and she again roared when he waved his fin "goodbye" at the end of her session. He also swam out and did a huge flip for her after "she" gave the command. Most importantly, she had a once-in-a-lifetime experience and we all came away with a greater respect for these intelligent mammals. Speaking with a pediatrician vacationing here at the hotel, he told us that the dolphin quest program is booked full until September; he wasn't able to get his five year old daughter in. Thank you, Dolphin Quest for giving Christi the rare privilege to enter the waters and the intriguing world of the dolphins. God bless you!!

How could that be topped?! It simply could not, but Christi wanted to try to snorkel and Shayne and I (who love to snorkel) couldn't have been any happier. Shayne rented the equipment and they went out together for Shayne to try to teach her. I was so surprised to see how quickly she caught on. Floating beside her later in the afternoon I was still in astonishment and said, "Christi! You're really doing it! You're really snorkeling!" She laughed and asked, "How old were you when you first learned to snorkel?" I laughed back saying, "Nearly 30!" Then she said, "I want to learn to scuba dive next." "OK, Christi. Whatever." I said knowing that she probably will dive someday if this wicked disease leaves her body. The snorkeling thrill was that there are Hawaiian Green Endangered turtles here at the hotel's lagoon near one of the many waterfall areas. Soooooooo cool! Christi got a bit nervous about the turtles, yet was psyched to get close to them again and again. Shayne laughed, "They say don't touch the endangered turtles, but they come right up to us!" So true! They really did! It was like they were the curious ones, not us. The remainder of the day was spent exploring pool after pool. The girls just love going down the many waterslides. We've never stayed at a finer property. "It's the perfect place for kids." a flight attendant on our Japan to Honolulu flight and who lives in Hawaii told us. I couldn't agree more.

Yesterday (Monday) we woke up, ate breakfast and went to the pool for a bit before leaving to drive (two hours) to Hilo to take a Blue Hawaiian Helicopter tour of the Big Island. The neck pain that Christi started in with the day before was much worse and the horrors of that never left Shayne and I the entire day as she was in a lot of pain and we knew it could be a sign of progressive disease.

We were concerned that the girls may be scared with the loud noise and all involved in our first helicopter ride, but they were not and were delighted to be flying through the sky in a helicopter. We flew over waterfalls and the active volcano - seeing the gas and the lava tubes. We also saw the newest 400 acres of the USA - where the 1983 and last year's Mother's Day eruptions have sent new lava flowing into the ocean. Christi most enjoyed seeing the anuenue (Hawaiian for rainbow) during the flight while I found it fascinating to see where the old road to the volcano was destroyed by lava.

Next I drove to Richardson's (black) sand beach where the girls played with Shayne for a couple of hours. They always love a beach!! We had dinner and then drove the two hour (windy, curvy roads) up Mauna Kea where it was a cold 30 degrees. There is nothing Christi enjoys more than a good planetarium show, so we thought, "Why not take her to the best star show on earth?" At the international astronomy visitor's center, known for the best star gazing on the planet, Christi could peer into space both with the unaided eye and with various telescopes. Her favorite was seeing mars through a telescope. She had great fun sipping hot chocolate and operating the observatory simulation. Throughout the day, Christi's neck continued to hurt. I wondered if this is new lymph node involvement, a new fast growing tumor pushing on her spine or what. Please God let it be too many trips down the waterslides at the swimming pools.

While not anxious at all to return to NYC, over the past two weeks I've discovered that I've really missed my hospital friends especially Virginia and Gina. It's amazing how close you become to the parents and children and how much like true family they are. Virginia is the sweetest, kindness and calmest woman. She also always seems to know when I want to be left alone or desire to talk. I really love my wonderful friend and wish she and Jay would have been on our trip with us! Shayne has been wanting to help Jay learn how to lift weights, but time simply hasn't permitted it as Christi is often "needy" when were at Ronald. I've really, really missed Gina this trip too. She's so beautiful and so great to talk with every day in the waiting room. And I can't journal about Gina without writing about her awesome parents too. They recently retired (Mother, like Gina, was a teacher!!) but are with Gina (from the Carolinas) at the hospital EVERY day helping with Harrison. When I told "Grandma" how much I admired them one day and that I hope to be a Grandma like that one day - if I am so blessed, she told me that they recently retired and how could they go out and enjoy life and pursue interests when Harrison is battling cancer? They simply could not They need to help. How profound! I've met so many tremendous people as a result of this ordeal. My life will never be the same.

It's hard to believe Christi officially has a "Terminal Cancer" as presently she is feeling well and extremely happy. These past twelve days have been the best twelve days of our lives! Our daughters are our world and it was such a blessing to be able to experience "our world" together with them. Thank you Make a Wish Foundation!!!! We will forever be grateful!! Thank you all for your kokua (help) and may our loving God bless you all!

Maloha, (Hawaiian for thank you)

What's Next? If all goes as planned, in twenty-four hours we'll be back in New York. In forty-eight hours they'll have an incision in her and at least a half dozen tubes and monitors of one sort or another stuck on her. These past thirteen days will soon be just a fading memory and life will be normal again. Oh, of course the memories won't fade. I took over 400 photos! But as not to totally stress out Christi's most incredible Webmaster Eric, I "only" submitted about 60 to him for her site! (Thanks, Eric!) Thanks everyone! I will update from New York as soon as there is something newsworthy to report. (Webmaster correction - you sent 97 to be exact, but it's a labor of love!) :-)

My recent post on the NB Listserv since many NB parents were curious about the results of the kid that was first to complete the newly awaited Phase One Trial at MSKCC:

Subject: Christi Thomas Update:

Aloha from Hawaii where Christi is putting the final touches on her Make-a-Wish trip. Dr. Kushner emailed while we were in Japan stating that after finishing the fourth and final round of 3f8/beta glucan Christi's bone marrow is still positive (Darn!!!!) but her MIBG scan is again improved as it has been for each round of antibodies. (Praise the Lord!!) We've been informed that surgery to attempt to remove her shrunken tumor from her aorta and along her spine is scheduled for Thursday, July 24th (My deceased father's birthday and also just 24 hours after we return from her Make-a-Wish trip.). A new central line will also be inserted to start a next treatment. We do not know what this treatment will be, but Shayne and I may possibly appeal for 'compassionate use' of more 3F8s/beta glucan since it appears to have reduced her bone marrow disease each cycle. While not happy about again having a central line and all of the water restrictions that go along with it, nor more importantly the risk of developing a life-threatening infection, I guess I should be thankful that days ago she bathed in the volcanic hot springs of northern Japan and today swam with the dolphins and learned to snorkel here amidst the turtles in Hawaii. (Photos will be on the website as soon as 'Webby' posts them.) God's great blessings to you all, my dear NB family!! Thank you, my support staff!!! What would I do without you?! Best wishes to you and your brave cancer fighting children and precious angel children in heaven above.

Aloha! Love, Angela (6 year old Christi's Mommy) dx: NB - IV, 9/11/02, chemo resistant disease, "flying by the seat of our pants" protocol.