Saturday, October 2, 2010

Absolute Remission!


I has been forever since I blogged. Facebook is just so much easier! Emily is... and only a sentence. This blogging stuff makes me think too much. However, this news requires a formal press release.

The final high resolution tests have been done. The port has been removed. Oral meds have ceased. We are in absolute remission! Done!

I can't say that life feels a lot different. We have a check-up this Friday, so the trips to Chapel Hill haven't stopped.

But, I will tell you this. Last Friday (not yesterday, but the one before).... that was the first day that I felt almost normal since April of 2007. All three of the sweet children were at school. I washed dishes. I folded clothes. I made a sandwich for lunch. I read a little.... Nothing extraordinary happened. In fact, nothing happened! A day with nothing..... It was nice! And I felt normal..... as normal as a Southern, stay at home mother of 3, Mormon Bishop's wife, Democrat, musician can feel! :)

So not really "normal".......but OK! I'll take it!

Saturday, May 15, 2010

The Carteret County News-Times article

Here's a link to a fabulous article all about Grant, and this weekends festivities in support of Relay For Life.

*please copy and paste... linking feature is messing up

And the article text, just in case anyone has trouble accessing the link.

"Youth plays on despite cancer"

Chemotherapy and spinal tap in the morning.

Going 3-for-3 at the plate in the afternoon.

No big deal.

It’s just another day in the life of Grant Nelson.

The Otway Little Leaguer doesn’t sweat the small stuff like a fastball on the inside corner of the plate.

Not after battling leukemia for the past three years.

“I don’t like sitting at home after I have my treatments,” said Grant, who turns 8 years old today. “It’s boring. I’d rather come out here and play baseball. I play basketball and soccer, too. But baseball is my favorite.”

On the morning of Tuesday, April 27, Grant, along with his mother Emily Nelson, made his monthly trip to the North Carolina Children’s Hospital at Chapel Hill.

There he received chemotherapy, both through a port in his left chest and delivered directly to his spine, and a spinal tap. Later that evening he was in Smyrna playing third base for his Down East Stingrays and going 3-for-3 at the plate in a 10-5 victory over the Shorebirds.

Three days later, on Friday, April 29, he scored the go-ahead run and tagged a runner out at third base to end the game in a 10-9 victory over the rival Pirates.

That's an outstanding week for an average Little Leaguer, much less one with cancer.

“A lot of people think he is finished with his treatments, because he looks like a healthy kid,” said Mrs. Nelson, 34. “But he is still receiving chemo. It just isn't hard chemo like during his induction phase. This is the maintenance phase of his treatment.”

Since January 2008, Grant's treatment has followed a repetitive 28-day cycle. He goes to Chapel Hill once every 28 days and receives chemotherapy, as well as a spinal tap every third trip, and for the first five days of those 28 he takes steroids.

“And he has medicines that he takes everyday as well,” said Mrs. Nelson. “Wednesday is our heavy medicine night. He normally takes 16-18 pills that night.”

Grant played T-ball three years ago, and has played Little League the past two years. He has played at various times with his hair falling out, skinny and pale, and swollen from steroids. In fact, his experience with steroids gave him a connection to a former Major League Baseball player.

“I used to say that Barry Bonds was my favorite player because we took a lot of pills to play baseball,” said Grant, proving that three years of chemotherapy has had no ill effect on his wicked sense of humor.

That wasn't exactly the baseball hero his father, Kevin, 33, was hoping for his son.

“We were having a conversation one day about Barry Bonds and I was telling him why we shouldn't root for him, because he takes steroids,” said Mr. Nelson. “But when he heard 'steroids,' he said that made Bonds his favorite player.”

Today he roots for the St. Louis Cardinals and his favorite player is first baseman Albert Pujols.

Grant, described as “hilarious” by his parents, has needed a sense of humor to see him through the past three years.

He was diagnosed with T-Cell Acute Lymphoblastic Leukemia on April 26, 2007, just two weeks shy of his fifth birthday. He had been sick most of the winter, getting several ear infections, colds and coughs, strep throat, stomach bugs and fevers.

Those illnesses, and a family history of leukemia, caused Mrs. Nelson to ask for a full blood panel when she took Grant to Dr. John Knelson for his kindergarten physical.

“I had a cousin whose daughter died from leukemia and my dad had a brother who died from leukemia when he was a little boy,” said Mrs. Nelson.

“Growing up, whenever we got sick my aunts would always say, 'You take that young'un to get some blood work, they look like they’ve got leukemia.' I told Dr. Knelson I thought Grant might have leukemia and he told me no one in their right mind would say such a thing. So I told him that story and told him it was something my family always discussed.”

Grant and his mother had just left kindergarten registration later that day when they received the call from Dr. Knelson.

“He said, 'Mrs. Nelson, it looks like you were right, we are going to need you to go to Carolina right now,” she said. “I was just so stunned. Totally stunned. Everyone I had ever known with leukemia had died. The worst part of it all was having to tell our families and all of the people who we knew loved us so much and would worry about us so much. I remember having to call my sisters. It was just horrible. I wouldn't want to relive that day again.”

By midnight, the family was in Chapel Hill where Grant received X-rays and blood work to determine the exact kind of cancer. He was properly diagnosed at 3 a.m. and immediately began chemotherapy.

And while it was a harrowing few days for his parents, Grant showed superhuman resiliency, as children often do in such situations, and took it all in stride.

“I remember I said, 'this is the best day of my life!' he said. “I got a portable DVD player on the way up there and at the hospital it was just like I was Curious George.”

Grant's favorite book at the time was, Curious George Goes to the Hospital. In the book, George swallows a piece of a jigsaw puzzle and is taken to the hospital where he receives X-rays and has his vital signs checked.

He spent 11 days in the N.C. Children’s Hospital and went into full remission after his first 28 days of chemotherapy. He missed the first half of kindergarten while he continued to receive heavy doses of chemotherapy on a weekly basis.

That course of treatment ended in January 2008 and he soon began to attend school on a modified schedule. By the end of the year his ability to fight infection had improved enough for him to attend school on a full-time basis.

Since then, Grant and his family, which includes sister Eden, 10, and brother Jacob, 5, have been on quite an adventure in their battle versus leukemia.

They have become well-versed in medical jargon, routinely discussing terms like IT methotrexate, vincristine, propofol, prednisone, dexamethazone and absolute neutrophil counts (ANC).

There have been countless shots, scans, blood transfusions and fevers. Grant's parents can't count the trips they've taken to the Carteret General Hospital emergency room due to fevers, sometimes approaching 105 degrees Fahrenheit, including one midnight trip that resulted in an early morning run to Chapel Hill. He has been hospitalized three times for high fevers.

The family has also learned just how pervasive childhood cancers are, often having to face long lines at the children’s hospital when they go for treatment. Throughout their journey, the Nelsons have become close with those children and their families and have experienced their highs and lows, as well.

“The other kids have been a great blessing in our lives,” said Mrs. Nelson. “Even the children who we have grown to love and then had to lose have brought such joy to our hearts. And their families are now forever intertwined with ours.”

At the moment, Grant's friend William Bunn, 9, is fighting hard to make it. The Raleigh native has received a bone marrow transplant and has now relapsed. His scans revealed Wednesday that his treatment protocol is not working this time around.

In October 2007, the family had to say goodbye to their new friend Matthew McKinney. The Croatan High School student lost his battle with leukemia at the age of 14.

“That, by far, is the hardest loss we have had to deal with,” said Mrs. Nelson. “Grant never really asked about dying until Michael passed away. And it was hard on him to face the fact that leukemia was something that could kill him, too. It’s hard. Most second-graders don't have to be so acquainted with grief.”

The Nelson's were part of McKinney's Relay For Life team, The Purple Rubber Monkey Ducks, last year and hope to be this year, as well. Relay starts 5 p.m. this evening at West Carteret High School and continues overnight through noon Saturday.

Due to Mrs. Nelson's family history with cancer, and Mr. Nelson's (his father, Fred, died from melanoma in 1999), the family has long been a part of Relay For Life.

Dubbed the signature fundraising event for the American Cancer Society, each year Relay for Life attracts teams from businesses, churches, schools and private citizens to help raise money for research and programs.

The relay event at West Carteret High School sees teams of 10-15 people who agree that one member of the team will remain on the track throughout the two-day event. Each team member is asked to donate at least $100 each.

In 2006, the family was part of a huge Relay effort on behalf of their friend Tracy Ballou, who later died from colon cancer, and also helped organize a benefit concert at Relay For Life in honor of Mrs. Nelson's former East Carteret chorus teacher Ellen Piner. She died from cancer in 2004.

Then in 2007, they took part in Relay For Life's cancer survivors' lap for Grant, just a few weeks after his diagnosis.

An accomplished artist who's also quite adept at building things with Legos – a regular “Lego maniac,” according to Mr. Nelson – Grant is looking forward to a trip to Victory Junction this summer.

Located in Randleman, Victory Junction is a camp for children with terminal and chronic illnesses. The camp is built on 84 acres donated by NASCAR’s famed Petty family and is part of the Association of Hole in the Wall Camps.

Grant and his family visited Walt Disney World in October 2008 thanks to the Make-A-Wish Foundation.

However, he's most looking forward to this August when his three-year course of treatments comes to a jubilant end.

“He really wants to take taekwondo (a Korean martial art), but we have to wait until he gets through with chemo because the chemo destroys his bone marrow and his bones are very brittle,” said Mrs. Nelson. “He is really looking forward to that. More importantly, he can't wait to be a normal little boy again, and no longer a cancer patient.”

Wednesday, February 17, 2010

Sweet William

Our dear friend William had his normal three month scans earlier this week. We were so devastated to hear that he has been scheduled to have several suspicious places biopsied.

Please keep William, his parents Amy & Mark, and his Sissy in your hearts as we all hope and pray for a miracle.

Thursday Morning Update: William has relapsed. His doctors are meeting today to decide what to do next.

I don't even know what to say. You can visit his Caringbridge site by clicking on the William Bunn link on the far right column.

Friday, February 5, 2010

Nickel'd and dime'd to death!

January can carry a pretty hefty financial load.

Everyone is still reeling from the Christmas spending extravaganza, baseball and softball registration begins, basketball games are in full swing, the tax man cometh, etc....

And right in the middle of it all.....the fundraising begins. Relay for Life really starts to kick-off its efforts, Jump Rope for Heart leads its way into Valentine's Day, and this year, we also got little cardboard boxes for Pennies for Patients, a division of The Leukemia Lymphoma Society.

I overheard one of my friends the other day lamenting to another mom that she was being nickle'd and dime'd to death!

Offensive - no. Thought provoking - yes.

I come from a large family. I remember at times it was difficult financially. My sisters and I often didn't have/wear/drive what the other kids did. My brothers were the youngest, and thankfully, the Hancock family economic climate had changed quite a bit by the time they were old enough to even remember the pre-Farm Bureau life! (Farm Bureau rocks, btw!)

That being said, I know very few people in my everyday circle of friends who can't spare an animal cracker box full of loose change. In fact, I think even in the Atlantic Veneer stage of life that my parents would have gladly filled up a box with spare change to send in to the school. They most probably would have sent in not 1 or 2.... but 6 such boxes! They surely would have even taken the opportunity in doing so to have a conversation with their children about the blessings of financial independence and the blessings of having healthy children. Having been touched by leukemia (my father lost a brother to childhood leukemia), they may have even talked to us about what cancer was and that it was an epidemic. They would have used the little cardboard box as a teaching tool.

There are plenty of things they might have done....but exclaiming that they were being nickle'd and dime'd to death wouldn't have been one of them! I count that among one of the reasons why they are and were the best parents in the world!

Before Grant's diagnosis, I must tell you that I never really even noticed what those little quarter collection displays at the check-out counter at Rite Aid were for! The kids loved to fill up the little quarter slots, but that was about all I knew. However, after April of '07, I became personally connected with The Leukemia Lymphoma Society.

Of all of the cancer related research, support, advocacy groups out there...very few offer any assistance to people/families who are battling cancer. Most fund research and research is critical. But at diagnosis, financial assistance is critical, as well. The Leukemia Lymphoma Society has a Patient Assistance program that will reimburse medical expenses of $500 for up to two years. Read back to summer 2007 and you will see that we visited the hospital every week. This schedule lasted for nine months. Needless to say, it didn't take long to tally up $500 worth of receipts for reimbursement! Each visit to the clinic cost somewhere in the vicinity of $5000. Thankfully, our insurance was in-network for UNC and we have wonderful support from our families, but spending the night in a hotel once a week can take its toll.

In response to the nickel and dime statement, I would characterize that the better part of 2007 as being $500'd to death! And for the parents of leukemia patients, they are doing so in the face of real death! DEATH! They are spending every waking moment wondering if this will be the day that they will hear the news that their kid isn't going to make it, or they will walk into the clinic and find that the 7 year old who was playing lego's last Tuesday died the day before while recovering from his bone marrow transplant, or the 15 year old who sat in the lobby doing Algebra homework last Tuesday died of pneumonia on Thursday!

And I hope that none of you ever, ever, ever have to experience that! Take my word for it, you do not want to go to there! I'm a little nauseous just thinking about it.

So - why the soap box today?

My friend Teri (Teri Freeman for you locals) is doing something amazing! She is running a marathon....yes, a marathon.... a 26 mile race! I can't even drive 26 miles without stopping for a Dr. P. But, Teri is running a MARATHON to raise money and awareness for The Leukemia Lymphoma Society!

And she is doing it to honor my little boy!

How about that?

I can't tell you how honored I am that Teri has chosen to do this.

AND - here's the kicker - we are going to help her do it!

How, you may ask!?

By clicking on this nifty little link and donating some nickels and dimes and even tens and twenties to the Leukemia Lymphoma Society!

Now.... go do it!

I did!

Monday, November 16, 2009

Giving Thanks

So, Thanksgiving is right around the corner -already! I realize that my posts are getting shorter and shorter and fewer and fewer..... Its not that I don't have anything to say. I simply find it so hard to find time to say it!

Grant finished a chemo week round of steroids yesterday. We are always so grateful to be finished with steroids. We started a new cycle this past Tuesday with a spinal tap and IT Methotrexate. We were happy to be able to visit with Jane and to see William and his family for a few moments as we were leaving. William was in for a round of scans to monitor his remission from Neuroblastoma. Evidently, everything was not exactly at it should be, so he is in again today for an MRI. We are praying for clean scans today!

To catch everyone up, our life in synopsis.....

Soccer is over.
Basketball has begun.
Christmas recital rehearsals are in full swing.
I have to write to Christmas program for church!
My mom is now a skinny person!
I wish both of my brothers lived closer to home...
Leah, too! (3 hours is still too far away)
My once beautiful landscaping needs some "welcome to Fall" assistance.
My house needs a good cleaning...
My Bishop/husband is working really hard - at work and at church!
I need a haircut and will soon need color as Aly keeps finding grey hairs intermingled with the auburn ones! Really - I'm still 33 -what's up with that?
Eden lost her last tooth, and continues to know just the thing to do to get on my last nerve!
She's almost as tall as me.
I noticed yesterday as we left for church that she looked like she was going to the prom.
She's beautiful!
Jacob is the life of the party - and enjoys throwing one every afternoon in my yard!
Grant could build a fully functioning space station with Legos...and would like to do so either in the middle of the living room or on the dining room table.
Its not easy to keep Jacob away from Grant's Lego creations, btw...
My life is so busy... but I am so blessed!
I love my husband.
I love my kids.
I love my job - the poeple I work with, the parents, and especially all of the sweet kids that I teach!
I love my Ma & Pa!
I love my sisters and their husbands.
I love my brothers and their wives.
I love all of my exceptionally beautiful and talented nieces and nephews!
I love my massive extended family and am so grateful to live out my daily life with them.
I love all of my good friends..especially Ashley, who is really more like my sister!
I love my life - its hard, it tiring, its amazingly wonderful!

8:23 pm Update.... William is all good! Scans came back clean today!

Wednesday, September 23, 2009

Good counts!

We're home from our monthly chemo trip. We had a great day! Good counts, fun visit with Jane, and lots of mommy/Grant quality time!