Christmas Eve, December 24, 2002
"Start spreading the news. We're leaving Sunday. We're going to be a part of it - New York, New York!!!" Unfortunately, our little princess has not responded as well as we all had hoped. Without a drastic change in treatment plans, she has less than a 10% chance of survival. Therefore, it has been deemed medically necessary that she be transferred to the Memorial Sloan-Kettering Cancer Center located in Manhattan, New York with the hope of saving her life. Shayne and I have researched, consulted, sought out and selected this renowned hospital which sees more than 80 neuroblastoma patients each year. (More than any other institution on the planet.) The MSKCC is also a leader in innovate methods of cancer treatment. There's a strong reality that we will end up with the same results; however, we don't want to ever look back and wish we would have done something differently throughout this horrendous ordeal. We will continue to fight this nasty cancer monster as long as this beautiful child has the fight left in her. Therefore, we're heading to the Big Apple where by the grade of God, she will be made disease free. We know that God performs miracles EVERY day. We pray that Christi will be one of them and will be a testament to His work. We appreciate all of your love and support. Thank you!
This has been a very difficult decision to make to say the very least. We thought we would go to this hospital years later down the road when she relapsed as a last ditch effort, not now. (80% Neuroblastoma victims relapse and when they do they have a 5-8% chance of surviving so the relapse issue is huge.) We were stunned by this blow to have to go earlier, but we are confident that it is the right thing to do. The final decision was made after much thought and prayer and after meeting with our fabulous oncologist in Columbus - Doctor Mandy. Christi's bone marrow has not cleared yet to microscopic levels as it should have. As she said, "You know the score. You know what you're dealing with." Shayne has been searching for the best hospital on the planet for Neuroblastoma treatment since September and in our opinion it is Memorial Sloan-Kettering in N.Y.C. Columbus sees just three patients per year for this deadly cancer. This hospital we're transferring to sees 80-100 per year more than any other institution in the world. They even have a neroblastoma TEAM so it won't be like in Columbus where you see the oncologist who happens to be assigned to work for you that day and who may or may not know a lot about your child's specific cancer.
We have prayed and prayed about this and have been lead to believe that there will be people in NYC to assist us due to an unbelievable friend of a friend of a friend!! (Thank you Jack and Herb and Steve!!!) We have been blessed beyond belief to have help and also have help with parking assistance (Did you know that parking is not free like here in Ohio and that it can be up to $40 per day where we'll be? No, that doesn't include an oil change or a car wash either, that is just the DAILY rate!! (smile) Boy have we been blessed! We never thought that that huge city was a friendly and welcoming one, but that appears to be the case for the Thomas Team. On Friday we made the decision to go and on Saturday morning an angel literally fell from the heavens and into our laps. We are a bit anxious to go and of course to leave this great support that has been displayed to us here at home, but know that we must and that the angel on earth and his friends will be available for us in the city if we call for help. (Thank you, Steve and friends!!!) Shayne and I spent the weekend humming, 'Start spreading the news......" To each other, enjoying our little, private joke of moving to the big apple. He wore his I love (heart) N.Y. shirt for two days. It may not have smelled so well, but it did a TON for our spirits!!
Sheer terror and panic literally ripped through me last Friday when it became apparent that we were changing our treatment plans. I felt fabulous about the hospital and medical team that we sought out and selected, but absolutely scared to death about moving to a strange city and not knowing anything about the area, etc. The safety issue was HUGE. (I grew up on a very narrow country road with only five houses and less than 20 people living in them on that one mile stretch of road. That is what I'm used to!) Almost immediately, our fears were calmed hearing back from someone there to let us know that it is in a very nice part of the city and we need not be concerned. This angel, Steve, has been absolutely unbelievable to us. Of course we will be very careful, but it's a tremendous relief to know that we're not in a bad section. Yesterday, Shayne asked a doctor there who's been instrumental in our selecting this hospital, "When will we get to come home?' The doctor told him that it depends on a lot of factors. We were also debating parking or flying, but now with Christi's blood counts at extreme lows, they advised us in Columbus NOT to fly even if she wears a mask there's too much of a risk. Thanks to Doug and Caroline and the Tiffin AAA we have maps and tour books of the city. It should be a ten hour, straight - shot drive. Shayne looked at the map and said, "It looks so easy, Christi can drive! We'll sit in the back and catch up on the sleep we've lost over the past 100 days." (hee hee) We had hoped to get her to see The Lion King as we know she'd thoroughly enjoy it, but that will all depend on her blood counts and what they advise in our new hospital. I just feel she's missed out on so much, she ought to get to finally do something. Shayla and Christi often act out the Lion King while they watch the video. It's definitely one of their favorites.
We will stay at the Ronald McDonald house. I'll give you an address when I have it. Each room has two twin beds and its own bathroom. The rate is $140.00 per week. Where else could you stay in New York for $560 per month? (More than our monthly house payments have ever been, but NYC is a different world I'm learning.) There are free laundry and cooking facilities inside. I just need to take my detergent. I'll take our cleaning supplies, as we'll clean our own room each day, but linens are provided. We'll have a cupboard in the kitchen and a shelf for our family's food. There are even computers so I'll be able to keep in touch. (We haven't heard back yet about the lap top. We're still hopeful for good news.) This house is a five block walk from the hospital. The treatment care is VERY different there. There is no inpatient chemotherapy, so unless she's recovering from surgery or ill with fever, we'll walk her there each day, treat and then walk back to the Ronald McDonald house. They said they'll put a pump on her back for us to deal with back at the house. Yesterday, I tried on her cute little snow boots that I picked up at a garage sale this summer to see if they'd fit. They did. Yipeeeeeee!! She was so excited when she was trying them on. She asked, "Am I going out to play in the snow?" I said, "No. These are for walking in the snow." Now that we'll be doing a lot of that in N.Y. in January I assume. She said, "I don't want to just walk in it. I want to play in it." It just reminded me of how much she's missing out on this year.
Sunday we were playing Christmas. She was Rudolph, Shayne - Santa, Shayla an elf and I was Mrs. Claus. She asked me if I'd make cookies with her. I almost gave my standard response, 'No. You can't have sugar. Tumors thrive on sugar." But then thought every other kid is eating Christmas cookies, why can't she have a few. So we made oatmeal cookies and she loved them.
I still have a very difficult time accepting that she's so sick. I'm thankful that she does not appear to be sick at all on the outside. Dr. Mandy did say yesterday that Christi's about the healthiest cancer patient she's ever seen. She's gained weight and is not on TPNs like the other kids. She has an incredibly positive attitude and rarely complains. Her doctor also said that they have referred two others out to MSKCC before. Neither of them returned home alive, but hopefully Christi will be the first! Goooooooooooooooo, Christi!! Stay strong, honey!
While things are not yet finalized, the plan upon arrival is to repeat the tests done in Columbus and then to do surgery immediately to attempt to remove this ugly tumor which is around her major blood vessels. Intense chemo will then be conducted for two rounds. They've told us that she's going to be very, very sick as a result of all of this.
We have no idea when we'll be back or if we'll have jobs when we return, but we believe we both must go and attempt this for Christi. She does not know that anything is wrong. We haven't mentioned this to her at all, but we are going to just say that it's part of the plan to get her better and never let her know that this all is new. She's been such a good sport. Shayne's nickname for me is "Sport" because he claims I'm always such a good sport, but truly we've come to realize that it's Christi who is the good sport of the family! Shayne will be contacting our lawyer to have the power of attorney and other items for Shayla changed and set up before we leave, not knowing when we'll be back. One individual I recently emailed with whose son was transferred out of their state to MSKCC, like Christi, told me that they went and didn't return for eight months. I've also learned I'll have my socks knocked off by New York prices so I'll pack the van well to set up home in our new room. We're hoping to find a whole foods, organic health food store close by as we believe that has been instrumental in Christ's great response.
Shayla is doing well. My Mom had her the other day while we were at the hospital and she told me that Shayla sneezed in the back of her car. She said to my Mother, "There's no sink in here." Good girl Shayla - she's been GREAT about constantly washing her hands like we all do to prevent germs from getting to Christi. It breaks my heart to know how little time I have left with Shayla before we leave and that she's doing to be devastated and feel abandoned. I'm not sure what will be done with her, but we hope to get her back into preschool where we know she will thrive and to turn her over to our family and friends to care for. This has been a most difficult decision, but we know she cannot possibly go with us.
It was really hard at the Columbus hospital yesterday knowing that we're leaving and not knowing much else. We've become really, really close and have grown quite fond to many of them at the hospital. Father Mark and all of the absolutely fabulous volunteers, the great staff and other patients and parents will certainly be in our prayers and will certainly be missed. There are tremendous folks down in Columbus! We spent 40 days there, received 12 transfusions and went there every Monday and Thursday since September. It really became our home away from home. Yesterday, I ran a little gift up for them to give the Loudners when they come in for Andy's transplant in a matter of days. (And some great potato chips made in Tiffin for his parents!) I also wanted to say goodbye to the nurses, but it must have been shift change when I was there as I didn't see more than two on the entire floor. I hoped that Jen and Q man and Miss Hodge would have made it out by Christmas, but that doesn't appear to be the case as they were there resting. I have to return on Thursday with Christi as she'll need another transfusion. (She received two yesterday.) It's also going to be extremely difficult leaving Caroline and Lisa here in Tiffin (and ALL of this fabulous support here from our small communities). Caroline and Lisa, my teaching colleagues for 14 years, have done so much for our family on a daily basis with errands and lessons and listening to me vent via email. Ladies, do you think Mr. Wank would grant a professional day to tutor Christi in NYC? Hee hee! She's really going to miss you dreadfully too and we know she's not going to feel well enough to do any lessons anyway. Most Neuroblastoma patients repeat this year in school. You've brought us so much joy by tending to her and by being so extremely cautious changing your clothes, scrubbing your hands and wearing your "lovely" mask to protect our precious princess when her blood counts were high enough to see you. THANK YOU!!! We'll be forever grateful!
If you'd like more information, this is the new hospital's web site.
So.....look out David Letterman!! The ever witty Christi is coming to your fine city and she can stay up late and joke all night!! So, if you ever need a substitute and need to entertain the kiddy crowd, give us a call! We'll be living at the Ronald McDonald house! (hee hee)
firstname.lastname@example.org (email) I'm still missing the majority of my family's emails from the laptop crash. Please email me if you haven't. Thank you!! Also, thank you in advance for not telephoning me. I break down every time and I don't have the time or energy for that right now. More importantly, I believe it's hard for the girls to see their Mommy cry. Thank you for your understanding! We plan to take off during the night on Sunday so that Christi will sleep the entire way and we won’t have to hear, "I'm bored!" (smile)
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Shayne & Angela Thomas: email@example.com