Monday, January 6, 2003
The fabulous sightseeing has ended and now we're back to the reason we're here - Christi's medical care. Today began her brutal chemotherapy. The plan is to complete two rounds of high dose chemotherapy on a three week cycle (or until the marrow clears), evaluate the need for a second look surgery and harvest stem cells (again). A peripheral blood stem cell transplant will be done as soon as she is No Evidence of Disease (NED) following consolidation chemotherapy. Consolidation is mega dose chemotherapy that wipes out remaining cancer cells, but also is toxic to her marrow leaving her to be rescued by her own stem cells. She will be very dependent on transfusions for the next three months. When she recovers from her transplant she will begin monoclonal antibodies and Accutane which should go for about six months. Radiation is still under consideration, but will probably follow the transplant. After all that she then plans to have a huge party and invite all of you to celebrate with her!! She's already started making the decorations.
As Christi's oncologist, Dr. Kushner, said "This city is GREAT for kids!" So, we've had a ball!!! Except for her getting really tired and the daily Broviac care, you wouldn't know she's very sick. We bundled her up, put blankets on top of her and with just her little eyes sticking out - off we went. On Wednesday, January 2nd we went to the American Museum of Natural History. She particularly enjoyed the planetarium show, the mammals and the dinosaurs. It was the first time she'd been out so it was the first time she noticed others (mainly curious children) staring at her. She's so used to seeing kids without hair and wearing masks that I think she perhaps thinks it's normal. She later told me, "Did you hear that Mommy tell her little boy that I was allergic to dust?" One child, about ten, walked up to her and was staring at her. Finally, I could not stand it any longer. I said to the child, in front of his mother, "Please do not stare at my daughter. She has cancer. Be thankful your healthy." I hope one day that all of this will be an excellent lesson to Christi on how to act around people with disabilities as she's experiencing it now first hand.
At her check up on Thursday the 3rd of January at Sloan we learned that she needed a blood transfusion which had never happened this late in her chemo cycle before. It was about noon. Shayne and I looked at each other stunned and they said, "What?" Shayne explained that we had free tickets and a private back stage tour to the Rockettes show at 2:30. They all chimed in and said, "Go go go!! Come back after the show! You can't miss that and this can wait until tonight or tomorrow morning." So we went to the show. It was incredible! We thoroughly enjoyed every single minute! Wow! I loved holding Christi on my lap and marveling at the show together. It was absolutely astonishing!! Our deepest thanks to Mike, the President at Shayne's bank and to his brother Dave who works at Radio City Music hall for giving us the tickets in the 8th row and also for arranging a private back stage tour! It was phenomenal!! Christi enjoyed trying on the costumes! The gentleman, John, who gave the tour could not have been any sweeter. He even held Christi's hand! What a gem - a rare and precious find! And what a once in a life time opportunity that will never be forgotten! Thanks, John, Dave, and Mike!!!!!!
Then of course we had to rush right back to the hospital for her first blood transfusion in New York. We liked the private room and she was alert and pleasant all of the hours we were there. God, thank you for keeping her happy despite this sheer hell she's living! I was so exhausted that I went out in the waiting room of the urgent care center and actually fell asleep on their couch! Some of you know that I'm the world's worst sleeper so you know I was tired if I could do that there!! Shayne and Christi woke me up after midnight and said it was time to go back to the Ronald McDonald House. In Columbus if they would have told us after a transfusion that we needed to load our kid in a stroller, toss blankets on top of her and then push her for eight blocks at midnight in the city we would have told them that they were crazy, but since this is New York we thanked everyone for their help and off we went! We went as fast as I could push the stroller. We arrived at the house in less than 20 minutes!! Brrrrrrrrrrrrrrrrrr!! It was c-o-l-d!!!!
On Friday, January 3rd, Shayne went out to set up our bank account. He came back and said it was too cold to go anywhere so I stayed at the Ronald McDonald House with Christi the rest of the day while Shayne ran out to tend to different matters. The test results indicated that after Christi's stem cells were purged following the three days of harvesting in Columbus, there were not enough cancer free ones left for transplant. Ugh!! It just reminded us of how heavily her marrow still contains this nasty beast. Also, her bone marrow test was positive for active neuroblastroma cells from ALL FOUR sites tested and there were markers in her urine for neuroblastoma too. Their tests are more sensitive here. For example, her urine never tested positive for NB in Columbus so they discontinued doing that test there. We're glad things are more touchy here. So the bone marrow infiltration issue remains the priority and surgery is being post poned because the bone marrow involvement is HUGE! They'll deal with the tumor later. So, Friday was not a good day with hospital news and weather, but that's why were here. Like Shayne said to me, "It's always the same bad news, but it's still always hard to hear it." She no longer is high risk neroublastoma, but VERY high risk neroublastoma! Leave it to Christi to have to be the standout! She's so competitive! (hee hee) Shayne also asked Dr. Kushner if he thought she had a chance at survival and he said that he would not put her through what she's going to go through if he didn't believe there was a chance. (serious mouth sores, infections, many transfusions, nasty side effects, etc., etc.) He told Shayne that he would tell us when it was time to go home. We really don't want to put her through this misery if she doesn't have a chance at survival. It's so hard to watch her suffer.
On Saturday morning, we took a taxi down to the piers and then went on an inside boat tour of the lower part of the island. It's still hard to believe that the twin towers are gone. Shayne had to be here for a conference six weeks before the terrorist attacks on America back in 2001. I stood in the TKTS (discount theater tickets booth) line in the World Trade Center for 90 minutes waiting to buy our theater tickets for that evening. As we floated past that section of the island on our boat tour I just kept staring out looking for those two tall buildings and thinking back to my time in line that summer day and all of the people I saw. What a horrible tragedy. So very, very sad. I'm so thankful to have this extra time with Christi. Precious extra time that the parents of those who perished on 9/11 never had with their children. Christi saw a picture of the twin towers in her My New York book. She asked if she could see them. Shayne said, "They're not there anymore." She asked what happened. He responded, "Some bad guys knocked them down." She asked, "Why?" He said, "We don't really know why." I think that's all the information she needs to know at this point in her young life. She has enough things that she worries about. Christi enjoyed seeing the Statue of Liberty on the boat and that was also when she realized that her tooth was loose! What a thrill! She's been waiting to lose a tooth for a very long time so the fact that she has a loose one on the bottom is HUGE for her! Now if we can just keep her little hands from wiggling it so that she doesn't put germs in her mouth, we'll be okay. This will be a challenge. We called home to have her little tooth pillow she sewed with Mrs. Depinet last year mailed to us. She also called Grandma Nonee to report this big milestone. We hope it doesn't fall out when her platelets are low because it could really be a problem.
Saturday evening the Ronald McDonald house had free tickets to the N.Y. Rangers Hockey Game at Madison Square Garden so we signed up to go. As I sat at the game and watched the players, I could not help but long to be at a Seneca East game watching the Tigers play instead!! How wonderful it would have been to be surround with those that we know and love. Things are so different here!!! I've only been gone for one week, yet I miss the great feeling of everyone knowing each other and looking out for each other. Christi watched 30 minutes of the hockey game and then fell sound asleep on Shayne's shoulder. We then took a cab back "home".
Sunday afternoon we attended the Lion King. (Again thank you to Dave!!!!! He arranged for us to have 2nd row tickets waiting for us at the box office! I'm sure he called in every favor he had in NYC and we're extremely appreciative!!! Thank you!!!) The show was unbelievable! Christi was mesmerized and spellbound! It was phenomenal! In the middle of it she asked if we could come back and bring Shayla next time because Shayla would like it too! It was so sweet! I know she misses her little sister - even if she won't admit it! She was all smiles the entire production! Tears of joy and happiness to be experiencing it with her flowed down my cheeks many times during the awesome production! I also knew it was our last time together before she really goes downhill. She loved following along in her program, watching the dancing and singing the songs. Thank you God for your angels on earth bending over backwards to help relieve our many worries!! Our deepest thanks to Dave!!
In the taxi on the way back to the RMcD house Christi said, "Can I have an I love New York shirt?" Shayne said, "Why? Do you love New York?" She said, "Of course!!!" We'll see what she thinks of it now that this treatment has started here!!!! Before today she'd been pretty weak and couldn't walk very far without getting really, really tired, yet she'd wake up and says, "Let's go exploring!!!!" She was so happy to be riding in her stroller checking everything out and reading all of the signs. We'd chuckle as we hear her reading the many signs from inside the stroller. She's also been taking lots of pictures as she plans to make her own My New York book to teach people about this city.
This morning, she went in for chemo. I'm writing my journal entry from her bedside at the hospital. It'll be quite different bringing her back to the house with it on a backpack on her back, but we'll adjust and may even like it better than receiving chemo on an inpatient basis. She's started on 72 hours of Vincristine and Adriamiacin with two days of Cytoxin given over six hours during the 72 hours. That is much different than the few hours of it she was on in Columbus. Ought to be a big difference in price too. Cytoxin was $900 in Columbus so Shayne was doing some quick calculations and said to me, "If it was $900 in Columbus, what will the triple dose plus Manhattan inflated prices be for just this one drug?" We had to laugh as that's the only way to really deal with it. We've learned that a one bed room apartment in Manhattan costs $3,000 per month! That definitely put our Ronald McDonald House rent of $560 a month as the best bargain in the city!! Oh, we can't wait to get home! Christi's quart of juice needed for her medicine was $4.45 and Tim and Denise can sell their farm fresh eggs here for $4.00 per dozen instead of giving them to Christi!! It's definitely a different world and I long to be home!
At this point we're not for certain where little Shayla is, but we do know that she is in great hands somewhere! She was to go with my Mom but when she returned to her home she decided she wasn't leaving and those two Grandmas decided to let her have her own way and to hang out at home. I understand that she was most upset with Grandma Nee Nee for taking down the Christmas tree even though Shayne and I were thrilled that task was taken care of! Thanks, Nee Nee! Also, thanks to Nee Nee for taking care of the "flood" in our basement. From what I understand the supt pump quit working and the battery back up didn't kick in. She was worried about our stuff being ruined, but I overheard Shayne say to his Mom on the phone, "It's just stuff!! Who cares about stuff? Things are not important." Christi's situation has put a lot into proper perspective for us!
We are slowly adjusting to life in the city. We have found some people we can communicate with at the Ronald McDonald House. It's VERY different though. We had some of our food stolen out of the freezer and refrigerator so I guess we'll wise up and just buy what we need for the day or so. And we're thankful that it's quiet, warm and feels safe. That is more than we expected. Shayne again tried his Spanish. He was in the national Spanish honorary in college which I always thought was impressive. Well, I had to bite my tongue to keep from laughing when he attempted his Spanish and a family said, "We only speak Polish." Christi asked another family if they spoke English and they said, "We speak Greek." We have found a few other people that we have been able to speak with, but haven't really clicked with anyone yet. We definitely miss our "hospital family" from Columbus!! We pray that they are all doing well!!
Congrats to Ohio State! Next year we hope to be at the Fiesta Bowl again in Tempe instead of being here in New York!! We'll do that parade in a big way. Right Aunt V, Joyce and cousin Josh?
Thanks to BNG for asking Christi to design your holiday cards this year. Wonderful web master, Eric has added the card Christi designed for Aunt V.'s employer on the "Links" part of Christi's web site so you may view her art work there if you'd like. Thanks to you all for EVERYTHING!!! We've been so blessed! May God wrap His loving arms around you all!!
This is an email Shayne sent a banking friend of his from Hawaii before we left for New York:
I watched Lilo and Stitch tonight for the first time. The girls loved it. Christi said "When I get better can I go to Hawaii and learn how to surf?" Wow! W hat spirit! I thought of you often during the show. Hopefully, Santa found you even though you gave your gifts to us. We continue to marvel at your generosity.
Christi is slipping physically. She is not near as strong as she has been. It is difficult to watch her slow withdraw. I know that I am going to miss her as she weakens through this next round of treatment. Last night she wanted to paint so bad but was exhausted. She got up painted for a while then would lay back down. She did this until she was finished. Bless her soul. She painted rainbows, flowers, and butterflies.
As you may know we are heading to NY. I am homesick already (and we haven't left)....mostly for Shayla but also for the security that a home offers.
Happy New year. We will definitely visit when Christi comes to Hawaii to learn to surf (smile). It may be a while but I am sure we will do it.
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Shayne & Angela Thomas: firstname.lastname@example.org