Sunday, March 9, 2003
A lthough things are not perfect
Before being split up due to possible chicken pox exposure, Shayla and Christi had been enjoying "feeding the doggies". What a way to catch a New Yorker off guard!!! "May I give your doggie a treat, please?" the girls say after our stroller race to catch up with one! The girls had been having a blast feeding the doggies and Shayne and I love watching the owner/walker's faces when they realize what we're doing. Sort of like performing our own "Random Acts of Kindness" since so many have been performed on us lately!
We started the girls' isolation from each other last Friday morning. Thanks so much to Dave and his wife for taking Shayne and Shayla in for the weekend and for taking incredible care of them in New Jersey! It was a much needed break for both of them and they were treated like royalty. Thank you, Kerschners!!
Christi had a very rough weekend that weekend. She vomited many times and made many "runs" to the bathroom each day. I was thankful that she at least had IV fluids running into her through the backpack that I lugged around the room for her because she wasn't able to eat or drink from Thursday until I handed her off to Shayne at the hospital on Monday. She was actually "getting sick" at the moment we were trading the kids, their clothes/toys and quickly shouting updates to each other as we again headed our separate directions for the new week.
Last Saturday she wanted to "go exploring - like to a museum." She looked on the map and came up with the Children's Museum of Manhattan where we also had free passes, so I agreed. Despite the fact that she got sick on the way, again in the museum and was very tired, she was in great spirits and never wanted to stop and go back to Ronald each time I offered.
We never left our room last Sunday. I spent the day packing up for the move to Riva's and to the hotel for Shayne and Christi and she was really sick and miserable. When I was sweeping the floor, I glanced at Christi and saw she had an odd look on her face. She lost her second tooth! Yipeee!! I shut the vacuum off and asked what she wanted to do with it assuming she'd like to try another tradition from around the world. She told me that El Raton gives more for a front tooth so she wanted to put it in a box beside her bed again like last time. After hearing that comment, I came up with four quarters, four dimes, four nickels and four pennies even though I thought $1.64 was a lot for a tooth; I justified it by saying it was only 41 more cents than last time and I'd hate to have her disappointed in the morning. She's had so many disappointments the past six months. Christi loves to count change so I knew she'd be thrilled with her find. I believe I used to get a dime for losing a tooth. (Tina, did you too or did you get a quarter? hee hee! Just checking! You know how Mom has to always be FAIR right down to the nickel.)
Christi did complain about a "ringing in her ears" a few times over the weekend. This was a crushing blow to me personally knowing that's how they told us we'd first know that she indeed was having hearing loss. I hope she always knows how hard Shayne fought against this. The way we finally bought into the concept of using Cisplatin at that high of a dosage was that if it's losing her hearing or losing her which is it going to be? There's a chance that this Cisplatin at this very high dose combined with the high dose Topetecan "may" kill the cancerous cells. There seemed to be no other choice, but to try it. What a nasty drug!
Shayne and Shayla took a 9:30AM train and were back into the city (with a huge bag of home cooked food from Mrs. Kerschner about 11:30 AM) last Monday. The wonderful and fabulous Riva met me at Ronald and helped me with the luggage. We took a taxi to her place. What a blessing!! This woman - beautiful inside and out, rolled out the red carpet for us. Shayla and I were so comfortable and happy for the week!! I couldn't have dreamed of having a better nor more comfortable time. She even insisted that we sleep in her bed while she took the sofa and she wouldn't let me do a thing. It was the perfect week to get to know Shayla again. A joyous treat and a special time with memories that I'll treasure forever. Shayla and I did a great deal of exploring (Trinity Church almost each day and where I also received ashes on Ash Wednesday, Children's Museum of Manhattan, World Trade Center site, Wall Street, Stock Exchange, the bull, Battery Park, Statue of Liberty and Ellis Island) as everything was so close. Thanks to Riva I also started taking the bus in addition to the subway. It's not so hard as she did everything, but hold my hand the first time! We also went to visit Riva at work and to meet her wonderful, kind and generous colleagues during a BIG snow storm. We looked like a mess when we arrived in the snow, but they could not have been any sweeter!! On one of our subway rides, the train was pretty full. A lady standing next to Shayla sitting in her stroller, yelled back as people were pushing in, "Stop. There's a baby here." Shayla responded, "I'm not a baby!" and much laughter was heard throughout the car. What a hoot! Shayla also performed her own haircut while I was in the shower one morning; therefore, she now has a cute new hair cut. (I'm sure she'll never pull that stunt again. When I discovered a lock of her hair on her pajamas that morning and she saw my look of horror she said, "I'll never do that again.") We also met an absolutely wonderful family with a beautiful and bright four year old daughter that lives close to Riva. Each night Shayla and I spent about two hours with them. Shayla just loved playing with this charming and sweet little girl every night and it was a great treat for me too to get to talk with awesome parents. It almost felt like everything really going on in my "real" life was so far away and that I was just a normal Mom and teacher again. (Dad's a teacher and union leader and Mom is from Japan - right up my alley!! GREAT conversation!! TREMENDOUS people!)
I talked with Shayne on Riva's phone about every night to keep tabs on them. (Thanks again, Riva!) Christi again had a really rough week. She received a few blood and platelet transfusions, had mouth sores, couldn't eat and her blood counts showed an ANC of zero for many days. We knew that the fever (and therefore inpatient stay) was just around the corner.
Shayne called about 9:30 PM this Friday night to tell me that they were in the Urgent Care Center being admitted. (Darn!) They finally arrived in her PRIVATE room on the adult floor (Thank you, Lord!) about 2:30 AM. I felt so bad for Shayne. He's exhausted!
This weekend our incredible, amazing, talented, energetic and downright silly COSI Explorer friends managed to sail their ship safely into the city from Columbus! What a special treat! And what a tremendous help!! They entertained Christi at the hospital in their unique and special way for hours and took Shayla to the American Museum of Natural History where she had an absolute ball with these two terrific playmates on Saturday. Thank you Harriott (Traci) and Elizabeth (Jenn). You've truly blessed our family with your friendship, kindness and talents!!
Yesterday, I was also blessed to finally meet a friend for the first time - even though I feel like I've known her for a very long time! While Traci and Jenn took Shayla to a museum, I toook the bus and met Robin at the Metropolitan Museum of Art. Robin gave me an audio headset. The phenomenal masterpieces displayed in the beautiful galleries at this incredible museum are breathtaking. Wow! And using the audio headset was definitely the way to make a great experience absolutely wonderful! Of course her company really made the trip fabulous! What a dynamic, stylish, intelligent and gorgeous woman! She is the "Gifted Goddess" of Gifted Education without a doubt!! (Thanks for a wonderful afternoon, Robin! God bless you!)
I spent the overnight with Christi last night while Shayne caught up with Shayla. They were really missing each other. I apologize for the long delay in my journal entry. I've received over 200 emails - many of them with concern since I hadn't posted an entry for so long. I'm sorry. 'We're all fine; we're just sort of "living like nomads". (smile) Thank you for all of your prayers and concern! You're the best and we'll be forever grateful!!!
So far no signs of the pox with either of the girls (Praise the Lord!) but they're still in the incubation period. The girls are allowed to be back together and to be back at Ronald on March 18th so this won't be as bad as it could have been. Those children that received the injection are not permitted back until March 24th. My dear friend, Becky will be arriving tomorrow and I can't wait! She'll be a tremendous help with Shayla during this tough week with Christi being impatient. I'm really looking forward to her visit!
Christi's future plans include:
Remaining inpatient until she obtains an ANC and remains fever free. (We'll probably be here all week.)
Stem Cell Harvest (soon) These need to be stockpiled in case of an MiBG therapy rescue as well as for her stem cell transplant - IF we can get her that far. Goooooooooooooooo, Christi! (Clear bone marrow, clear!!!!)
March 20 and 21st her scans (bone scan, CAT scan, and a MiBG scan) and bone marrow test
March 24th our meeting with the surgeon and anesteologists
March 25th surgery date. (I'm looking forward to the day of getting rid of what's left of the nasty tumor; however, dreading it knowing what a horrible place it is and that she doesn't have any spare parts in that area which can be disposed of! One of the reasons we were thrilled to come to this hospital was the great surgeon - Dr. LaQualia. We were advised by others in the medical profession what a world renowned surgeon he is. Also, many parents have told us that their child would have lost organs without this brilliant, humble surgeon. What really impressed me was that he has his hands blessed every day. I've heard he says, "I just hold the instruments and God does all the work.")
Thanks for everything! My next update won't be so long in coming next time. God's blessings to you!
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