Tuesday, May 5, 2003
People are often unreasonable, illogical and self-centered;
If you are kind, people may accuse you of selfish, ulterior motives;
If you do good, people may accuse you of selfish ulterior motives;
If you are successful, you will win some false friends and some true enemies;
People may cheat you;
What you spend years building, may seem insignificant in the eyes of others, and someone could destroy overnight;
Discipline is an unusual undertaking.
If you find serenity and happiness, they may be jealous;
The good you do today, people will often forget tomorrow;
The people you serve may be unlikable, ungrateful and unimpressed by your dedication.
People really need help but may attack you if your help them;
Honesty, humility and simplicity make you vulnerable;
Give the world the best you have, and it may never be enough;
You see, in the final analysis. It is between you and God;
Anyway, the above poem, was written by Mother Theresa and shared with us at church during the sermon. Ironically, this sermon tied in a 48 year old cancer victim's recent funeral. It was all too fitting and after a quick glance to Shayne, it made me shed some tears right there in church. So many people have been our "Mother Theresa's" during this crisis with Christi's cancer. And we thank all of our "Mother Theresa's" for doing good we do not deserve, anyway. Thanks!
Christi tolerated last week's painful monoclonal antibody treatment as well as could be expected. Always trying to make the best of each "good" day, we made sure our weekend - free from treatment, was wonderful! Thankful that she didn't need any medication for the withdrawal symptoms, we walked for hours, exploring the city and stopping to enjoy the different things we discovered along the way. The girls played in Central Park and at the CMOM (Children's Museum of Manhattan). Making the most of our museum membership, the girls again enjoyed the American Museum of Natural History too. A highlight on Sunday afternoon was attending CMOM's fundraiser down at the Javit Convention Center. They advertised it as the "city's best birthday party" and it was! We thank CMOM and MSKCC for the complimentary tickets allowing us to attend. What a joy! We walked all the way home. It was over two hours, but the girls were enjoying watching the city go by and holding their newly created art creations, as we pushed them in their carriages. Shayne and I enjoyed the beautiful, calm weather. With the great weather and Christi being pain-free, it was the most enjoyable weekend. We've been so blessed.
Anyway, this week Christi is continuing with her second week of this second round of experimental treatment. I can't even begin explain how hard it is to watch her suffer from the painful treatment. It's an absolutely sick thing knowing that I've signed the consent forms to go ahead and put her through this torture all starting through the IV drip in her arm. I pray that this attempt will prove successful. I'd never subject her to this nasty treatment if I didn't believe that it may get her to a N.E.D. status and allow her to go on fighting.
This morning I received the first good news in eight long months!!!! While I'm trying hard not to get my hopes up, I'm literally bouncing around the room. I pray that this is the sign we've been waiting for. The bone marrow biopsy report is back. (This is not the bone marrow aspirations where all four sites are still showing positive for NB, but the biopsy.) For the first time, Christi's left sample shows, "NO EVIDENCE OF NEUROBLASTOMA". The right sample shows "less than 5%" of the specimen is NB. While I know that these cells hang out in clumps and they can be hard to catch, I'm still happy. OK, OK, I'm thrilled; downright thrilled!!!! Thrilled beyond belief with this small, small piece of good news. Tears keep streaming down my face; I'm so happy and so full of hope. (Marrow testing is sort of like fishing in an ocean. You can't rule out fish even if you don't catch any. You know that they are still there. NB cells often hide in nests or clumps. We know there are still fish many in Christi's ocean; yet the fact that none were able to be detected in one small sampling is HUGE as far as I'm concerned.) Christi was meeting with her most fabulous teacher, Anne Marie, when I met with the oncologist so next I went to the pay phone and immediately called Shayne back at Ronald taking care of Shayla and tending to some financial matters. While he was very happy himself, he reminded me that I know how this game is played and not to get my hopes up. Next, I called my mom and my sister. I was not able to get an answer at grandma's. I know it's really not much to celebrate, but it felt fabulous making those three phone calls!!!! Anyway, I hope this is a sign of more good things to come! Thank you, thank you, dear Lord!!!!!! We really needed some good news and this was our first good news, ever! I've come to believe that when a child is in pain, the minutes crawl, and with more and more bad news, the clock stops. I finally feel like the clock is again starting to slowly tick.
We also thank God that we are here in New York for such accurate testing. I still remember getting the calls in October and again in November from our other hospital telling me that her bone marrow report came back clean. (Oh my! It was far from clean! It was a HUGE mistake! Twice!! How crushing.) Many parents joke that this hospital can "find a needle in a haystack" and we're glad that they're so very careful here at MSKCC. NB is a nasty beast and it must be completely undetectable in order for other parts of NB treatment to go on. Come on bone marrow, please clear so that we may go on to her surgery, bone marrow transplant, radiation and Accutane treatment. We love our little gal and believe she has so much she can share with this world.
When Christi was 25 months old and Shayla was 4 months old we went to Disney World. My annual teachers' meeting was in Orlando so we drove in a day early to take the girls to Disney. Anyway, Christi has asked repeatedly when she could go back to Disney World so now she is counting the days. We'd like to thank the wonderful Hampton Inn of Tiffin for making this trip possible by providing our lodging in Orlando. For our airfare, we are using the four free ticket vouchers we received when we were bumped off of our flight to last year's teachers' meeting in Dallas. They expire very soon. (Thank you, American Airlines!!!!!) And another huge THANK YOU to some absolutely wonderful and thoughtful folks for providing us with Five Day Disney Park Hopper passes. Yipee!! I can't believe this has all happened!!! Because of all of the above generosity, our costs should limited to rental car, some other admission tickets, gas and food. We've been so richly blessed!! Thank you, "Mother Theresa's"! You are the greatest!!
Once we fly out of New York and arrive in Orlando on Saturday afternoon, the girls will be thrilled to find that Aunt V (Shayne's sister and Christi's Godmother) will be flying in from Phoenix and later in the week the girl's Maternal Grandma (Nonee) and Christi's other Godmother and her namesake (my sister - Aunt Tina) will also be flying in along with the wonderful and fun-loving cousins - Ashley and Shelby!! Yipeeeee!!!!! This will be a fabulous family time spent together. We've even requested hotel rooms in close proximity to each other. I'm as excited as the children!! We know that following this Phase One study Christi's on, her next step in treatment will be either MiBG therapy or a stem cell transplant. Either one of those will leave her transfusion dependent for months so it will be a very, very, very long time before she'll even have the opportunity to leave New York again once one of those treatments takes place, not to mention the possibility of both. Therefore, NOW is our time to explore and we couldn't ask for a better time of year!!!
Anyway, in addition to celebrating Christi's 6th birthday on Tuesday the 12th, we plan to visit the Disney parks, go swimming at the hotel, explore Universal, and to tour the Kennedy Space Center (for our little space buff - Christi). Dr. Kushner said that eleven days is a long time to spend in Orlando. We think he ought to try to spend five months living in New York's Ronald McDonald House with two small, active children one of them with a life threatening illness and then see if he still thinks that 11 days in Orlando is a long time. (Smile. We love Dr. Kushner! He is absolutely, positively awesome! We just thought his comment, truly one of concern, was so hilarious considering what we've been through.) I'm positive the time will FLY by!! We will even have two double size beds in the hotel room - unlike the two twin beds and three pillows we all four share at Ronald. Yipeee! We believe our time will rapidly pass and all too soon we will be right back here battling this nasty beast.
While we are gone the dreaded "Day #248" will come and go. This will be on May 19th. The average neuroblastoma patient lives an average of 248 days after diagnosis. This bias Mother always knew Christi was never "average" anyway. (smile) Go, Christi! Mommy's proud of you. I can't think of a better way to spend Mother's Day either!! I've been so blessed to be these girls' Mommy.
Recently, Christi's web site received it's 100,000th hit. Amazing! I can't believe how this little girl's crisis has spread around the world. We would like to thank everyone for their prayers and good wishes. And anyway, I guess this really tells me that I should check more closely for typos before submitting my journal entries to Eric. AFTER every entry is posted on the site, I reread it and then notice the errors. Oops! I really should go back and re-post them; however, maybe there's beauty in the fact that most of them were written late at night after long, exhausting days.
Well, anyway, I will now close. My next journal entry will be submitted from sunny Florida. Thanks for everything, dear sweet "Mother Theresa's"! We love and appreciate you and all of your efforts on Christi's behalf! God bless you!
Lots of love,
Christi's Joke: Why was six afraid of seven? (Because seven "ate" nine.) hee hee!
Christi's Quote: "I want to do nice stuff like people do nice stuff for me." (This was her response to the boy in the other bed receiving his 3F8/beta glucan treatment whimpering in pain. She wanted to make him a card. Sadly, this four year old lost his father one year prior to his 6/02 diagnosis. Our hearts are heavy for him and his family. Also he, like Christi, still has some disease and therefore can't go to transplant yet either. We pray for a NED status for this precious child.)
What's Next? Saturday we will fly out of New York to Orlando where we will make memories and enjoy our time with our precious children and family who will be flying in to join us. We are having a hard time accepting the fact that we've been told Christi will not have a 7th birthday; therefore, we will make sure her 6th one on May 12th is so very special!! If all goes according to plan, only one day will have to be spent at an Orlando hospital for blood work. Anyway, then we will return straight to New York for testing and that will probably be followed by a third round of the monoclonal antibodies, depending on the testing results.
We also hope to drive home for a quick Memorial Day weekend. (The day hospital is closed on Memorial Day.) Christi would like to have a lemonade stand at her home and donate the money to help find a cure for NB so that other kids don't have to go through what she's going through. She's been talking about this lemonade stand since October when she first played the Lemonade Stand game with Daddy at www.math.com so maybe this is her time to do it. Her compassion for others that are sick or in pain has really impressed me. She's done a lot of living this year.
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Shayne & Angela Thomas: email@example.com