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The Coveney Kids 
Carolyn in Central Park with Uncle Pat and Aunt Linda
In January 2003, at age four-and-a-half, Carolyn was diagnosed with stage IV neuroblastoma. Her treatment consisted of 5 rounds of high-dose chemotherapy, an 11.5 hour surgery to remove her primary tumor, 56 days of 3F8 Monoclonal Antibody treatments, a peripheral blood stem cell (bone marrow) transplant, 14 cycles of radiation, 6 cycles of high-dose 13-cis-retinoic acid, and 4 cycles of low-dose oral VP16.
She is a Five Year Event Free Survivor!
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Journal
Tuesday, May 27, 2008 9:01 PM CDT Again it has been a long time since I posted a real update. Where to begin?
Carolyn’s foot surgery went extremely well. She had been nervous about it all week, but when the morning came she woke up and said “let’s go.” Of course, everyone at the outpatient surgery center was impressed with her—she so knows her way around a hospital and just asked questions about anything she wanted to know. The anesthesiologist seemed to be particularly taken with Carolyn as she explained why she wanted to use the mask for sedation and where to find a vein for the IV after she was asleep. They let me put on the “marshmallow suit” and go into the OR with Carolyn and the anesthesiologist let her hold the mask herself for the sedation.
She did fine with the recovery, except being a little ticked off that I wasn’t allowed in the PACU and couldn’t see her until she was on the step-down side. The first day with the casts was pretty frustrating for her. I carried her upstairs that night for bed (note to self—carrying 75 lb child upstairs may be why there is no cartilage left in your knees), and then worried all day Friday how I would ever get her down again. While I worked at home in the morning she stayed upstairs in my bed, watching DVDs and eating off of the princess tray. I came upstairs for the afternoon and by about 3 pm she had figured out how to get around w/o the crutches. By dinnertime she dressed, grabbed the banister and walked downstairs, and we went out to dinner with friends!
She was supposed to have the casts for 3 weeks, but it rained all day the Sunday and Monday after the surgery and by the time she got home from school Monday they were wet. We got the first appointment at the orthopaedist’s office Tuesday and after they cut the casts off the doctor looked at the incisions and decided she didn’t need new casts. We came back Friday morning for a dressing change and then had to run out and buy some shoes to wear to school because the doctor said she’d healed so well, she didn’t even need the walking boots anymore! So I guess it’s a pretty good thing it rained that weekend, or she would have spent 2 weeks in casts when she didn’t need to!
The next big event on our schedule was the Kids Walk for Kids With Cancer in Central Park on the day before Mother’s Day, where Carolyn was walking in honor of her friend Harrison Nichols. Evan elected to stay home with Dad, so Carolyn and I decided to try to get ahead of traffic by leaving Friday afternoon.
I should have known it would be an interesting weekend when it took us 8 hours to get to NYC, the first four of which were spent trying to get out of Maryland! Between the off-and-on rain showers and many construction sites, I-95 was such a mess that I ended up taking back roads almost to Delaware. My night vision isn’t the best to begin with, let alone driving in pouring rain, so as you might imagine, it was a white-knuckle drive for us on the BQE trying to get to our pied-a-terre in Brooklyn.
But we made it and the weather was wonderful for the Kids Walk the next day in Central Park! I think this year was the largest crowd ever and I know the donations are also running at their highest total ever—so far, over $125,000 and donations are still being accepted.
This year, my friend Kathleen’s nine year-old daughter Abby gave one of the speeches and she did an incredible job! Abby’s younger sister Kerry, who is about 2 years younger than Carolyn, was diagnosed with NB a little over 2 years ago. She was treated at MSK and thankfully is doing great. Abby spoke so well about what it is like to be a kid in a cancer family. It was such a moving speech! As a parent of a kid with cancer, you try to balance as best you can, but you know the non-cancer kid(s) are getting the short end of the stick. It was just heart-rending to hear Abby talk about how hard it was for her, how she worried about Kerry and her family. Of course she thanked all the middle- and high-school students at the KWKC for their involvement and dedication to helping kids with cancer. I think it must have been very meaningful for all of the students who worked so hard on the walk to hear another kid explain just how much their efforts mean!
The event was just wonderful and we got to catch up with so many people! Barbara Z. was there with her husband Stuart and of course, their Yorkie Uno, whom Carolyn adores. Angel Ryan’s parents, Aunt Linda and Uncle Pat. came in from Long Island and played with and spoiled Carolyn till she was in seventh heaven. And Vicky, the volunteer that coordinates the flights for Corporate Angel Network—who I’ve been talking with on the phone for the past 5 years and become friends with without ever meeting face-to-face—came down to the city to finally meet us and some of the many families she’s helped over the years! All of the doctors were there except Dr. Kramer, who had a family event to attend, and many other in-treatment and off-treatment families came. This is one of my favorite events because it is always so wonderful to see our NB kids together playing in the park, just being kids, instead of in clinic hooked up to IVs. I am just so grateful to the NYC kids who pull this together every year!
Not to mention we ended up having an impromptu consult with Dr. Cheung and Dr. LaQuaglia during the walk! For a while I found myself walking with Dr. Cheung while Carolyn was up ahead with Linda, Pat and Dr. LaQuaglia. Dr. C asked how Carolyn was doing and I decided the time had come to tell him about her continuing stomach problem: she can’t ride any distance in the car without her stomach hurting. I don’t think it is motion sickness because she is not nauseous (believe me, this kid knows from nausea), it is pain. Now that we’re driving about 20 minutes each morning to her new school, this is becoming a real problem. She arrives in the morning feeling bad and often just sits at her desk with her head down for 20 to 30 minutes until she feels better.
Dr. C listened to my description of the situation, asked some questions, and then said, “Oh, you need to talk to Mike.” (Right—I always refer to the world’s leading NB surgeon as ‘Mike!’) So after we got to the finish point, I did discuss it with Dr. L, who called Carolyn over, had her discreetly raise her shirt so he could palpate her belly, and told me to call his office to schedule an appointment for June, when we’ll be in clinic for her checkup. So Carolyn will be seeing Dr. L then, and he’s going to discuss her problem in tumor board and see what ideas the other docs have too. Its things like this that make me so glad I chose to have Carolyn treated at MSK.
Well, some people would think the long drive on Friday, followed by a wonderful day in Central Park, and freebie $300 medical consult would be enough for one weekend. In fact, I pretty much thought that myself, and was hoping for an uneventful trip home on Sunday and the usual week of work and school.
Carolyn and I got up Sunday morning, had some breakfast, checked out a toy store (since Aunt Linda had given Carolyn some cash that was burning a hole in her pocket), and headed for home. The weather was sunny and pleasant, and the roads not too congested, so we just took our time, made a few stops along the way, and had a nice trip. Somewhere east of Baltimore it started sprinkling, then raining, and it kept up on-and-off for the rest of our trip home. We picked Evan up at Dad’s, stopped in the grocery store for some frozen pizzas, and invited some friends over.
The rain outside was a continuation of the weather that had started the previous Thursday and caused us such trouble trying to get out of Maryland. As we sat in the living room, I thought I heard a drip and determined it was coming from around one of my living room windows. Odd, the vinyl windows are only a few years old, they’d never leaked before! I tried to figure out some way to stop it but couldn’t, so I ended up just putting a towel down to catch the water and hopefully save the carpet. Ten or 15 minutes later, I heard another drip—from the middle of my living room ceiling. Carolyn and her friend were in the den playing Webkins on the computer and said they heard a drip—which turned out to be a line of drips in the corner of the ceiling. Water was also dripping out of the wall near the ductwork.
My friend went upstairs—water was pouring out of the ceiling fan/light fixture over my bed. I ran up to see it, then came downstairs to find water dripping from the molding around the living room entryway. Soon, it seemed every time I turned around water was seeping or dripping somewhere else!
I called a friend who, despite being sick with bronchitis, came over and went up in my attic. There he found the new vents the HOA had put in across the front of the house when the roof was replaced the roof last summer were leaking. Actually, water was pouring in, through and around them! Once the insulation had been saturated, the water started leaking out of any opening it could find—the window moldings on both levels and every piece of trim work, the light switch in the hall, the ceiling at the base of the staircase. Had it been red, it would have been a perfect horror movie!
By now I had called the HOA’s answering service 3 times and still no one had returned my call. My friend poked a small hole in my bedroom ceiling to try to channel the water and keep it from spreading across the ceilings and going down the back walls of the house the way it had the front walls. He put another small hole in the den ceiling to drain the water there.
Now that I knew what the problem was, I called the HOA again. The lady at the answering service told me they had so many calls, no one would be returning mine. “Do whatever you think you have to,” she said, “they won’t be calling you until the morning.”
Concerned about the water pouring out of the electrical fixtures, I called the fire department and was told to shut off the power and get out. But I knew the holes in the ceiling were letting out bucketfuls of water that we were constantly dumping. I couldn’t just abandon our house.
The kids prepared to sleep in Evan’s room and I called their Dad and asked if he could come help. Within about 20 minutes Gordon and his wife Barbara were there with buckets and flashlights. After hearing my story and looking around, Gordon said the only thing to do was get everyone else out, turn off the power, and he would stay and empty buckets by candlelight.
Which he did. All night. Even after a huge chunk of my bedroom ceiling fell in on his back at 3 am.
It rained all night. I got up at 6am and called in to work. Then I called a roofing company owned by a friend of a friend and the owner agreed to come out and put a tarp on the roof. I called Gordon to tell him the roof guy was coming, which is when I found out about the ceiling. “OMG!” I exclaimed. “Are you okay? What did you do?” “I’m fine, it hit my back,” Gordon said. “I just laughed. What could I do, standing there bailing water by candlelight?”
When the roof guy showed up, it turned out the problem wasn’t all with the vents. It seems the gutters the HOA is responsible for cleaning were clogged, allowing water to accumulate on my parapet roof. When the water got high enough, it started leaking in through the vents, which had been placed too low. How high is high enough? When the guy came down off the roof after clearing the clog, his pants were wet to the knee! But once he got the water draining again, I didn’t need the tarp because the water stopped running into the attic when it got below the line of the vents.
Before I called the roof guy, I had called my homeowners insurance. The representative gave me a claim number, told me to save my receipts for “possible reimbursement” and said an adjuster would contact me within 72 hours. That would be at 7am on Monday morning. The next day, someone from the insurance company called and said my claim had been reassigned to the “catastrophe team” and a different adjuster would be in touch within 72 hours of this phone call. After two nights in a hotel I took a furnshed two-bedroom apartment for the kids and I and got Sally puppy out of the kennel.
At 11:30 am Friday, my adjuster finally called after I’d spent a while on the phone explaining that my house was filling up with MOLD and although I had a claim number, no one from the company had contacted me. He’s a nice young man. He explained the claims process to me, and recommended I call a water damage company like Service Master or Serv Pro to first come dry the house out so then he could come out and evaluate the damage. I called Service Master and they agreed to meet me at the house Saturday morning.
I don’t know what I was thinking they would do really. They called and said they were on the way and we met at the house and I started showing them around all the areas where water had been leaking. The crew leader had a meter to measure moisture in the walls and he tested every place I showed him and dutifully noted the reading. Then he said, “Okay, these walls have to come out, and the ceiling on the second floor, and the carpets.” And the guys brought in their sledge hammers and a box of contractor bags and started tearing my house apart and bagging up the debris.
So the good news is, I’m now sure we have hardwood floors on the second floor of the house. And I’m getting an almost completely remodeled bathroom, along with some new walls, ceilings, flooring, a paint job and all of my ductwork cleaned. When all of this work might be started, we don’t know. When all of it might be finished is an even bigger unknown.
In the meantime we’re living in the apartment. It’s not bad, but it is kind of like your first apartment: we have 6 place settings, two sets of sheets for each bed (Carolyn and I are sharing), a set of towels for each of us, and a lovely set of cookware from IKEA. Every day Gordon or I go to the house to meet the kids getting off the school bus. We usually pick up a few things needed at the apartment—more clothes, school supplies, linens, Tupperware, bar-b-que utensils, etc. By the time the repairs to the house are finished, we’ll likely have moved most of the contents of the house into the apartment—one grocery bag at a time!
So as you can see, we’ve been busy. And the next few weeks promise to keep us hopping as well. Carolyn is “bridging” to Junior Girl Scouts this week. In June, Evan will be promoted to middle school and we’ll have end of the school year picnics, then there’s the trip to NYC for Carolyn’s checkup and her ballet recital. Chances of me posting updates are not great, though I might try to put up a couple pictures of the house.
Someone was saying that given the events, I’d had a pretty bad Mother’s Day. And while I agreed, I know it could have been a lot worse. Nothing that was damaged is irreplaceable. We’re safe and have a roof over our heads. Things will eventually be fixed. Harrison’s Mom Gina spent her first Mother’s Day without her son; my friend Diane spent her last Mother’s Day with her daughter Emily, who lost her long battle with NB the next day. Please keep these families, and all the kids fighting cancer, in your thoughts and prayers. All is well with our family.
Love,
Jen
Read Journal History
Hospital Information: Patient Room: HOME! Memorial Sloan-Kettering Cancer Center
1275 York Ave.
New York, NY 10021
212-639-5948 (PDH)
Links: http://www.mskcc.org/mskcc/html/2868.cfm Neuroblastoma care and treatment at Memorial Sloan-Kettering Cancer Center.
http://www.BandofParents.org The Band of Parents-ordinary parents in extraordinary circumstances, bound by hope in the fight to save their childrens' lives.
http://www.inova.org/video/blood_donor_services.html?bcpid=1119166971&bclid=1119252481&bctid=1119199374 Watch Evan & Carolyn's video for Inova Blood Donor Services
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