Saturday night, February 22, 2003
Cast your burden on the Lord,
The greatest Valentine gift (and the perfect medicine for Mommy and Daddy) was delivered safely to New York last Friday night. (Thanks Aunt Marty & Tina) What a fabulous family reunion!!! Shayla grew. I was taken back by how tall she became in our absence. We were so concerned about the possibilities of snow and poor traveling conditions, but they made an uneventful voyage to NYC. We enjoyed the birthday party they brought for Shayla on Saturday (The day Christi was discharged.) and looked forward to spending time with Tina and Marty on Sunday afternoon.
Early Sunday morning there was knocking on our door. It was Tina and Marty telling us that a blizzard was coming this way and they wanted to head for home We hated to see them leave, but we were happy they left as hours later the snow started falling heavily and it continued for days. Central Park - not too far from Ronald, ended up with 23 inches of the white stuff. They called it a blizzard and great snow fall doesn't occur very often here. I had to keep chuckling to myself that hours earlier I had sent my snow boots back with my sister and aunt thinking I wouldn't need them anymore and to save much needed space in our room. My friend from Texas wanted to send me some boots. I had to joke with her - Cowboy boots??!!
Thanks to the awesome Tiffin native, Dave, we were able to attend Sesame Street Live and enjoyed our front row seats immensely as well as getting to meet Elmo and The Count prior to the wonderful show. Shayne was even selected from the audience to be on stage - not exactly the appearance he imagined himself playing at the world's most famous arena - Madison Square Garden, but nonetheless, he made it to the great stage and he was awesome!!!! He did not realize that they put an apron on him until that evening when he looked at the picture I snapped. One of our friends, Mark, said that it looked like "Mr. Clean Meets Mary Poppins!" hee hee! Thank you, Mr. Kerschner for the great experience and memories that we'll forever treasure! Today he also treated us to see Spiderman at Radio City. Radio City has by far become our favorite place in New York City!! http://www.radiocity.com We enjoyed lunch at an "out of this world" restaurant called Mars 2112 after the show. Christi's really into astronomy so this was the perfect place to take her. What atmosphere!!! May we never forget the kindness, compassion, and generosity bestowed upon us and may we always do the same for others as we've received so much goodness. Sunday evening Aunt Marty called to say that they arrived safely back in Ohio. Thank you, Lord!!!!!
Sunday, the great COSI Explorers came and played with the girls here at Ronald. It was fabulous to see our little ones having so much fun with these wonderful gifted and talented actors doing such awesome good deeds when they could be doing so many other exciting things in this tremendous city! Thank you Krista (Frederica) and Mat (Dmitri)!!!! You rock!!
Due to the massive amount of snow, we did not want to take Christi out into the snow on Monday morning. (We learned that it was the worst snow storm in seven years.) Shayne called the hospital to see if he could draw her blood samples at "home" and walk them over there. They agreed so first he walked to the hospital to pick up the supplies. When he returned he said that there were blocks that had not been shoveled so he had to walk in the street. The snow was thigh high. He reported that there were many struggling parents carrying their children in their strollers to the hospital. As he drew her blood, I thanked God for his expertise to draw her labs and prayed that she wouldn't need any transfusions. I hated to see her trudge through the snow. Shayne again walked in the blustery blizzard conditions and then walked "home". When the phone call came in with her blood count numbers and the fact that she didn't need any blood or platelets, I jumped up and down with joy! Yes, Christ!!
Tuesday morning I stayed at Ronald with Shayla while Shayne took Christi for her bone marrow test and MiBG injection. She also needed a platelet transfusions. I couldn't believe that they were going to sedate my five year old daughter and I wasn't even going to be there, but I knew with Shayla now here and the blizzard, there were no other options. When they returned home that afternoon, the wheels on Christi's carriage were still packed full of snow. Like usual, she woke up in a horrid mood from the anesthesia. My heart broke for Shayne hearing about the struggles he had with Christi until she was finally able to "sleep it off". Also, because of the blizzard the MiBG - always in short supply anyway, was not able to be delivered to the hospital. Her injection of the radioactive material was postponed until Thursday. We remain thankful that this amazing cancer institution is able to continually receive it given the fact that there is a nationwide shortage of it.
Tuesday evening, the great folks at Ronald arranged for the kids and families to visit Madame Tussaud's Wax Museum in Times Square. The NYPD pulled up in vehicles in front of the house and provided the transportation. Because of the tremendous snowfall, what should have been a 15 minute drive, took sixty minutes. Christi and Shayla napped in the back with Shayne while I enjoyed getting out and seeing the unbelievable amount of snow. On some streets they were using bulldozers to load dump trucks. Our driver told us they then haul the snow out to the river. We had a blast at the wax museum. We did not anticipate the children enjoying it at all, but they really did. While they didn't recognize many of the sculptures, they thoroughly enjoyed posing for photos that a digital camera allows the opportunity to inexpensively do just that. What a hoot!!!
On Tuesday night I received a very disturbing phone call. My Grandpa had congestive heart failure and was in the hospital. My Mom and sister were on their way to Willard, but I felt like my hands were tied. I spoke with Henry, the Chaplain here at Ronald. On a lighter side, he told me that there is a fountain in the chapel that Christi might like to watch if I plug it in for her next time we're there since she was so humored by the teddy bears in the church. Henry is a very sweet man!
With Shayla's presence, our small room now seems even smaller; therefore, every night we've been using the house's basement playroom. Christi and Shayne tackle the many arcade - style games and Shayla and I play "Little House" on the toy side of the room. Shayla is really enjoying listening to the Little House books too. She likes the paper dolls and has a very long attention span for listening to Shayne and I read from the series each night. (Thanks, Beth)
Because Christi's counts were the highest they've been since we arrived in the city (Thank you great, determined prayer warriors!!) and because she didn't have any appointments, we bundled up and headed over to the American Museum of Natural History again on Wednesday thinking our new Little House lover, Laura (Shayla) would enjoy the many historical components of the museum. This most impressive museum contains 45 permanent halls - a lot to explore and marvel at! Shayla was particularly interested in The Fossil Halls which display more than 600 specimens representing the world's largest array of vertebrate fossils. Basically - really cool dinosaur skeletons!
Thursday morning I was awakened by the ringing telephone. The very sad phone call came from my Mom to let me know that Grandpa passed into the gates of Heaven during the night. While I'm thankful that he's no longer suffering in pain, it's still so very, very sad knowing that I'll never be able to kiss him hello again, to have him tease me or my children or to tell me that he loves me "a great big pile". Shayla and I visited with Grandpa and Grandma about 12 days before Christi was diagnosed last fall. I took Christi took school and then drove to see them. Grandpa was extremely tired that day, but still managed to tease Shayla and I. I thought that with Christi in school and me teaching part time I'd have a lot of time to visit with my family this year. Well, that definitely proved not to be the case and I'm greatly saddened about Grandpa's death. I debated and debated how I could get home for his visitation and funeral mass. However, when I talked with Grandma and Aunt Mary they both told me to stay in New York and to take care of my family. Even though Mom had offered to pay Shayla and my airfare to fly back for the funeral, I agreed that it was probably best if I remained here to help with Christi. I didn't want to drive ten hours each way with Shayla and I knew I could never leave two children (one with a life threatening condition) with Shayne so I decided to pray from here as Grandma asked me to do. Please join me in that the Lord will accept Grandpa into His gates of Heaven. He was such a kind, cute, calm and wonderful Grandpa with the most beautiful twinkle always in his eyes. I can't believe he's really gone. No one could have ever asked for a better Grandpa!! (I'm sure my Dad's been talking his ear off since he arrived!!!! If there are fields to farm in Heaven, I'm sure Grandpa and Dad are taking care of them!) My heart aches for my family back home. Although Grandpa was 90 years young, I don't think age matters as you're never really prepared for great loss through death. God, please bless and welcome Grandpa into your loving arms and his eternal home.
Christi received her MiBG injection on Thursday. Also on Thursday afternoon, we took the subway down to Toys R Us so that Christi could share the fabulous four story toy store (complete with it's own ferris wheel) with Shayla. Shayla loved it too! While the girls and I explored the complex, Shayne stood in line at the half-price ticket booth and bought us tickets to see Beauty and the Beast on Broadway. Wow! It was fascinating!! We all four loved every single minute!! After the show, we were in Times Square trying to get a cab. While Shayne stood with his hand up out on the curb, I gazed down at Christi thinking how much longer is she going to be able to stand here. She gets so tired walking. We were holding hands, then I noticed she put her free hand up as if to hail a cab herself. As soon as she did, a yellow taxi pulled up in front of us. So on the way home she explained to Daddy the proper way to hail a cab to meet with great, instant success. (What a hoot!!) She told him she raised her hand high and steady and looked at the taxi like she really meant it then it pulled right up. She told him he should be more serious and not get distracted trying to catch a cab. (hee hee!)
At the show, the five year old beautiful and charming little girl in front of us called Christi a boy. Christi whipped off her hat, laughed and said, "I'm a girl. I just don't have any hair." Shayne chimed in with his constant saying of, "We go to the same barber!" (hee hee) Christi is really doing well without hair, but we cannot get her to wear a mask any longer. So, if her ANC is below 500 we do not go out. It seems to be the best we can do and have to accept that. She's been through so much and has so many worries. One night she dreamed that someone pulled her Broviac out. I can't remember ever worrying about anything when I was five years old.
This week Shayne met another Ohio family at the hospital. Their son Bobby relapsed and is here for treatment. We're so sorry that they are here, but are glad to have such a nice family from Ohio here fighting with us too. It's like we're all in the same club - a club none of us ever wanted to join, but have paid the highest of dues.
Joining Christi's Clubhouse is darling Carl from Minnesota!! http://www.caringbridge/mn/carcar. They reside next to us at Ronald. Karl was the only NB case at his home hospital in three years so his parents found Sloan to continue his treatment. We'd appreciate your prayers as he will enter into his transplant this coming week. I'm going to really miss trying to win over this darling three year old. He's so curious and oh so cute!!! Go, Carl!!
Tension was building all week and couldn't have been any thicker come Friday morning as Shayne and Christi headed out the door for her MiBG scan. We knew that Friday was the day we'd receive the news - good or bad; we had no idea. We knew how difficult it was going to be to try to keep our spirits up if we received bad news again. The stress and the continual bad news is really getting draining, taxing and tolling on us all - really gut wrenching every single day despite the best of facades we put on for the girls. Friday was the day we had been waiting for yet dreading it and sort of not wanting to know the news. She's been through six high dose rounds. I don't know how much more her body can tolerate. According to Dr. Kushner, before organ failure occurs, these kids usually have their bone marrow spent. (Meaning the blood counts would never rise.) Unfortunately, it is appearing that she has refractory disease. (This means it is no longer responding to chemotherapy and options are severely limited.)
Late Friday afternoon Shayne brought Christi back from her tests and then walked down to the hospital again for the report without her little ears around When he knocked on the door of our room I opened it and saw his red eyes still filled with tears; my heart fell. I just couldn't really believe that there again could be such bad news, but that indeed is the case. According to Shayne: The MIBG scan is unchanged from early January meaning we have had no effect on the disease since we came to New York. The bone marrow biopsies are positive with large clumps of nueroblastoma cells obvious. These are chemo resistant cells that will probably not respond to further chemotherapy. Most likley they are slow growing and may not overtake her very soon; however, they dim the hope of a cure.
This is all just been absolutely unbelievable! If someone would have told me five months ago, that I'd be waking up next to an unemployed, bald guy in New York City each morning, I would have told them that they were crazy not to mention all of the other horrors that are happening. Now I think I can believe just about anything even though I'm still in shock from yesterday's absolutely tremendous blow.
WHAT'S NEXT? Good question!! We will meet with the NB team at 11:00 on Monday and will determine a plan of attack. Doctor Kushner believes that blood counts will not rise until midweek and then she can begin something. Options may include: Phase One Study (beta - glucan and monoclonal antibodies / 3F8s), 3F8s with colony stimulating factor, arsenic, oral VP-16, a new chemo concoction (something she has not seen yet like Topotecan, or MiBG therapy at C.H.O.P. (Philadelphia) Shayne has been researching the many experimental options. We give our sincere thanks to the wonderful Lisa and Dr. Wyn back at Children's in Columbus for helping us locate articles. They really care about kids there. THANKS!
Today two awesome teenagers from Virginia "stopped by" the Ronald House to spend a bit of time with us. We met Mitchell when he sat in front of us at the Lion King in January. This weekend he and a friend were in the city checking out a college. Can you believe that these two great looking teenage boys came to bring us cheer when they could have done absolutely anything in this exciting city??!! Amazing! Truly there are fabulous young people in our great country and that was proven to us without a doubt today!! (In addition to today's "charity work" Mitchell will be doing Mission work this summer. Goooooooo, Mitchell!) Thanks, Matt and Mitchell for coming to visit this afternoon!!
Dear friends and family, your prayers are much appreciated! We hope and pray that Dr. Kushner and the Neuroblastoma Team will make the right decision for Christi and that the new treatment tried will be effective in killing the Neuroblastoma cells dancing around in Christi's body without being too toxic to her. It's like the devil that won't quit and cannot be captured! Thank you all for everything! We appreciate all of your love and support!!
Christi's Jokes: "What time is it when an elephant sits on your watch?" (Time to get a new watch.)
"What did King Tut say when he got scared?" I want my Mummy!!
Christi's Quote: "You don't know what's going to happen, so just make the best out of whatever happens." (Again, this quote isn't about her cancer, but about not being able to get back from a museum this week in time to watch her new favorite TV show - PBS's Cyberchase. It was rush hour and we couldn't get a taxi so we missed her 5:00 show. The next day she asked if we could take a fast subway train instead and we did.)
MEMORIES OF MY GRANDPA FALTER:
When I was in the fourth grade, Mom and Dad when to Las Vegas for a week to celebrate their wedding anniversary. Grandma and Grandpa came down and stayed with us. (We lived just down the road from them and they used to live in our house.) There was a huge snowstorm and we spent the entire week home from school. (I'm sure that was more than Grandma and Grandpa bargained for!) We spent a lot of time building card houses - in fact we used every deck of cards in our home and theirs. Cards were stacked up all over the entire downstairs. Now that I know what a "neat freak" Grandma is I wonder how she tolerated our mess for so many days!
I can remember Grandma and Grandpa having Halloween Trick or Treat candy for me every year - even as a "big" girl. When I was away at college, Grandma would some times mail me a couple of dollars to buy my own trick or treat candy. I thought that was sooooooooo thoughtful! Now that I have children I enjoy taking my girls to their house in their costumes at Halloween time and there is always a bag of treats for Mommy too! Thanks, Grandma! I really missed that this fall, but still hope to be back with BOTH of the girls next year to be with Grandma!!
When I needed a Halloween costume, Mom came up with the "great" idea of making me a skunk. I believe I was about in the fifth grade. Grandpa used to call me "stinky" occasionally to make me chuckle so he made me a wonderful skunk tail for my costume. I believe I won first place - thanks to Grandpa! How many Grandpas have made a skunk tail?!
On the day that each of the girls were born, Grandpa was praying his rosary for us. Just hours after they were born, he and Grandma were there at the hospital to welcome them to the family despite the fact that they had plenty of great-grandchildren already. They're always thrilled to welcome yet another one.
And of course there is the time when Grandpa saved me from my wicked sister's handcuffs!!!!! My sister and I were playing cops and robbers. My older sister (6) of course got to be the police officer. She put her plastic hand cuffs on me and they would not come off! I was three years old and really scared. We went down to Grandma and Grandpa's where Grandpa cut them off and saved the day!!!!
Grandpa, thanks for the wonderful memories I'll forever treasure!! Thank you for being a perfect Grandpa who showed me and my family so much love and who taught me so much through your quiet and ever gentle ways!! I'll always love and miss you! Until we meet again...............................
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