It’s Mother’s Day weekend and we couldn’t have found a more incredibly super-Smarty mom to feature. Meet Amy Christenbury. Amy is a stay-at-home mom to Hayes (10), Grace (8) and Grier (3 1/2). Amy’s youngest son, Grier, has been battling a rare childhood cancer, neuroblastoma, since last March. I have followed their story since I first heard about it since it hit very close to home for me. My nephew who is now 14 was diagnosed with neuroblastoma when he was four. He is now a thriving teenager and has been cancer-free for 10 years.
How was Grier diagnosed with stage IV NB?
He complained of his tummy hurting but continued to play and eat normally. The doctors originally thought he was constipated. The first Friday night in March he woke up screaming in pain – we called our pediatrician and she said to take him to the ER. We did and nothing was discovered. This happened the next Friday night as well and the same thing was told to us—he might be constipated and to follow up with your doctor during regular office hours. At first he complained of just tummy pain—and later he had some other symptoms. A low-grade fever, stiff neck and finally a limp. Dr. Satterfield admitted him to get a full work-up and they saw the tumor on the MRI. His tumor was “pancaked” around his entire abdomen and he had NB cells in his bone marrow. Needless to say his journey to fight began March 27th and he has gone through some tough procedures… 7 rounds of high dose chemo, 14 rounds of radiation, bone marrow tests, stem cell harvesting, surgeries for ports, biopsies and a 10 hour surgery to remove the tumor, multiple hospital stays for chemo and in between for fevers—multiple blood and platelet transfusions and the list goes on and on.
How old was Grier when he was diagnosed?
He was almost 3—It was March 27, 2007 and he turned three June 8, 2007.
What is Neuroblastoma?
Neuroblastoma is a solid tumor cancer that begins in the nerve tissue of the neck, chest, abdomen, or pelvis but usually originates in the abdomen in the tissue of the adrenal gland.
Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. The average age at diagnosis is two years old.
Prognosis for Neuroblastoma is dependent on age, stage of disease, and the molecular biological and cytogenetic characteristics of the tumor. There is very little known about why Neuroblastoma occurs, or about what factors increase the risk for occurrence. Currently, there is no known cure.
Tell us about your blog, www.gogriergo.com and your fundraising efforts?
At first the blog was set-up by our church, Covenant Presbyterian to let friends and family know what was gong on with Grier. It was a huge help because I did not have to tell the same story over and over to everyone. And the messages people left gave us strength we needed to get through that first month at CMC. Since last May, the blogs are written by me and it helps me as much as anyone. I usually write everyday if we are in active treatment, meaning at Levine Children’s Hospital or in NYC. If we are not,I will update at least once a week.
Our family has been blessed by a lot of people who want to help. There was a concert by the Bad Daddies in Freedom Park last October and funds were raised for Grier’s treatment here and in NYC. Most recently magnets were sold that say Strike out Neuroblastoma… Go, Grier, Go! And the newest fundraiser is the T-Shirt with the same logo. There have been others as well and everything has helped a lot with the cost of treatment as well as travel back and forth to NY. It is also my hope that the awareness of this orphan cancer increases and maybe more research will be done that will improve the survival rates for the kids. It is important for me to be able to give back since we have been given so much this past year. A good example of giving back is the 2007 Hopebuilders 5K— Three friends and I who have experienced how much a hospital does for you when you have a sick child raised money last October for the Hopebuilders 5K— Our team “Hope is Good” raised almost $11, 000 ( a record was set!) for Levine Children’s Hospital. We are lucky to have this hospital in Charlotte—you never know when you or a family member or friends may need a state-of-the-art children’s hospital.
If you would like to purchase a Go Grier Go magnet for your car, you can find them at the following locations:
– T. Reid and Company at 429 East Blvd.
– Alphabet Soup Gifts in Sharon Corners, 4724 Sharon Rd.
– Charlotte Swim Academy at 9315-A Monroe Rd.
– Black Forest Books and Toys at 115 Cherokee Rd.
Also if you’d like a t-shirt, contact Kerri Norwood at email@example.com.
Grier also has a Caring Bridge site, www.caringbridge.org/visit/grierchristenbury. It is similar to the blog— updates only– some tell me they can not get access to blogs especially at work!! So– I do both– cut and paste!!
How do you balance Grier’s treatments in NYC with your family here in Charlotte?
We had a lot of practice while he was in the hospital in Charlotte. We made our first visit to NY mid-October, so from March to October we tagged-team everything. I would stay at LCH during the weekday and come home to shower, eat dinner with Hayes and Grace, help them with homework or get them to their activities after Jeff got off work. He would stay with Grier for a while and then we all would go up to the hospital and do the switch again. On weekends, I would sleep at home! We also have a lot of help from family and friends. Without the help, we could not balance the two lives we live as well as we do. We are also fortunate that my older children go to a great school and have wonderful teachers. They have continued to thrive under all these life changes. I also have tried to take one day at a time and be as normal as possible. Since his diagnoses, we have learned to live with cancer and will continue to do this as long as it takes.
Tell us about the Ronald McDonald House in NYC.
The RMDH is located in the upper east side of Manhattan – it is about 5 blocks from the Hospital (Memorial Sloan-Kettering). The location could not be any better. It is the largest facility of this type in the world. There are 83 rooms and sometimes it is full. I would say that about 80% of the time ,it is full with Neuroblastoma families from all over the world. The rooms remind me of my old dorm room—BASIC—!!! There are 2 twin beds and a “magic” bed (a pull-out sofa)—and a bathroom! It costs families $35 a night which is such a deal since everything in Manhattan is so expensive and the location cannot be beat. They have a playroom in the basement and do activities most nights. A lot of groups come in and volunteer their time as well as donate tickets to events, toys, and other items. This is a wonderful service to families because these illnesses not only affect you emotionally and physically but also financially. Charlotte will have a RMDH, www.rmhofcharlotte.org, soon. It will help families that are hospitalized at LCH and Presbyterian.
What is the most important thing that you’d like to share with Smarty readers about NB?
Neuroblastoma is a childhood cancer of the sympathetic nervous system, affecting approximately 650 children in the U.S. every year. It is the second most common solid tumor in infants. Most children are diagnosed by 2.5 years of age. Up to sixty percent of them have high risk disease that has metastasized (spread to other parts of the body) by the time they are diagnosed. One problem all childhood cancer patients face is the lack of money for research. We are thankful there are not more children diagnosed with cancer. However, the relatively low number of diagnoses means that finding new treatments for childhood cancer are not profitable for drug companies.
What is Grier’s favorite restaurant in Charlotte?
Before Grier was sick we would go to SouthPark for dinner on Friday nights. He liked Chick-fil-A and Arthur’s. He has quite a few favorites now—La Paz, Mr. K’s, and Tai Pei Express to name a few.
What is your favorite date-night spot?
Hmm—that is a hard one. Jeff and I have not been out that much since last March and if we do we are on a mission (Christmas and birthday shopping)… I would say a movie and dinner (nothing fancy but with outside seating in warmer weather) would be my favorite—
What is your favorite activity with your children?
We like to play soccer or baseball in our front yard… walk around Freedom Park and the Greenway and the newest indoor activity would be playing the wii!
What is your favorite children’s boutique?
I like Fancy Pants in Myers Park but I usually shop Home trunk Shows. I used to be a Home Show Junkie!! Hannah Kate is my favorite! But we have almost outgrown the trunk shows — good for my bank account but sad everyone is getting too big!! I would say Mini Boden is my favorite catalog for 2 out of 3 of my kids. My 10 year old is all about “sport clothes”!!!! Dick’s Sporting Goods is a boutique –right?????
Best place to find a good deal on kids’ clothes?
I used to buy some great things on eBay— you have to know what brands you like. But then I found a great Internet site called www.littlelavender.com. It is awesome for boutique brands and occasionally has sample sales with the home show lines. And I also find some great deals at Gap Kids and Land’s End overstock page- I do lots of Internet shopping!!
Our favorite park is Freedom Park— we live too close to travel anywhere else!
Minivan or SUV?
This is the great debate at my house too! I have an SUV and love it, but I think I would have liked the minivan when my kids were too little to buckle themselves.
Best thing about raising a family in Charlotte?
Charlotte is a good size—lots to do and close to the Mountains and the Beach. After living in NY for a while we love to come home to all the trees in Charlotte!
I could not live without my…
That is a hard one—obviously my family and friends but I would have to say my Mac Laptop and cell phone. They have kept me connected to people when I could not be home!! It is one of the first things that I pack when we head to LCH or NYC!
Best kept secret in Charlotte?
I am not sure there are too many secrets in Charlotte— I would say AlphabetSoup for gifts and monogramming and Black Forest Books and Toys!! I also like to go to Phil Aull’s on Halloween to get our annual costume picture— it is walk-in and very reasonable for a 5×7!
I wish someone told me sooner about…
That is a hard question! There are so many new things I learned about this past year—but the most important would be the lack of funding for pediatric cancer. It is really hard to believe that so many children are diagnosed with a form of cancer and funding for better treatments still is not up to par. A lot of times it is cancer families doing fundraisers to provide grants and money toward a cure. Meanwhile they are often fighting for their child’s life at the same time as well as trying to work and provide for their family. I hope that the Conquer Children’s Cancer Act passes soon providing money for much needed research. And it would be nice to have a BIG name celebrity like Bono or Orpah to get behind this cause so there are no other families faced with the news of pediatric cancer- I am dreaming BIG!!
And on a lighter note— To make a photo collage for your Christmas card—then you do not need a perfect group picture—which is almost impossible!
Thanks, Amy! Please know that you have all of Charlotte rooting for your sweet Grier. Good luck and I will be following your blog closely. Happy Mother’s Day!