One of our friends- Colby Byrd

Hello everyone-
Yesterday went well in Chapel Hill. Grant did just fine with the chemo, and we were in and out in two hours! Grant was sleepy on the way home, so the coming home was easier than usual too.

With this part of the schedule, the chemo is especially hard on his neutrophil counts - yesterday it was .4, that is getting to the dangerously low lever. Dr. Blatt thinks that he will "crash" with his counts this weekend, which will keep him homebound with special precautions of being around anyone with the slightest illness. She also warned Emily that any fever is pretty much a trip to Chapel Hill for a hospital stay. So- we are going to be very particular with Grant's activities, and pray for a non-event weekend.

The article below is about one of Grant's friends- Colby Byrd. He is a true hero- after completing 3.5 years of chemo, Colby relapsed after having been off of chemo only one month. He has begun the whole process over- he is such a sweet little guy- so if you have a moment, say a special prayer for Colby- we love him and his family. When Grant was in the hospital in August, Colby had been in the hospital for a month with his counts at .0- without the ability to ward off any type of infection. He was supposed to be at the clinic yesterday at 11:00, but we finished early and missed seeing him.

Grant will go back to Chapel Hill on Wednesday next week- Dr. Blatt, we hope you are wrong, and he'll make it through the weekend without a fever!!

Thanks for checking in. Love you all.

CHAPEL HILL, N.C. -- For terminally ill children, their hospital stay can be seen as a time of weakness and pain, but a program called Flashes of Hope is showing them in a new light.

Colby Byrd, 6, was surrounded by support as a photographer takes his picture. He's been battling leukemia for about four years.

"This stay, we've been here for three weeks. He had some side effects from one of the chemo drugs," said his mom, Melissa Byrd.

But at this moment, chemo is far from Colby's mind.

"This is wonderful. It's amazing. It gives the kids a chance to be funny, free," Byrd continued.

It's all part of a national program called Flashes of Hope. It partners with photographers, turning hospitals into studios, and patients into stars.

[The Byrd family gets their picture taken.]
The Byrd family gets their picture taken.
"Flashes of Hope is devoted to bringing out the beauty in children who are having a difficult time in their life," said Nancy Padgett, with Flashes of Hope.

The program also brings in makeup artists for an uplifting experience for weary parents.

"After about three weeks of not having makeup, to come in and just have people pamper you a little bit and make you feel special," added Byrd.

Each family receives free portraits, and Colby already has a plan for his pictures.

"Put them on the wall," he said.

For all the children who are photographed, these are lasting reminders of their strength through the hardships and the laughter that sustained them.

"We can go back years later and show him and talk about what was happening," said Byrd.

UNC-Chapel Hill Head Football Coach Butch Davis donated the money that started the Triangle chapter of Flashes of Hope. Davis gave the money at a national fundraiser before he was ever named head coach at Carolina.

A relaxing bath!

This afternoon is a travel day to Chapel Hill for Grant. He will have an early appointment tomorrow morning at the clinic. Last week went very smoothly- he was accessed by home health on Monday, then to Chapel Hill for the Tuesday routine. Grant is such a fine little patient! He had his spinal, lumbar puncture and six hours of iv's. The clinic was once again very full, so I took a short trip to a mall during the rush hour on the second floor of the clinic.

Each trip there are new faces and new stories. The hardest part of this trip was meeting a young couple with a 3 month old little boy who is very sick. He had to have his chest catheter cleaned and reworked- the little feller cried for about half an hour while his mama and daddy stood beside him trying to comfort him. The nurses had to hold him down, and they came out of the room crying because of the compassion they felt for this young family in crisis.

We know the staff at the clinic very well now. Never a finer group of doctors, nurses and staff could be found. We are so grateful for their skills and for their sweet dispositions.

A couple of weeks ago Grant was feeling a bit grouchy. He was achy, so I told him I thought he could enjoy a whirlpool bath in my bathtub. Wow. We struck gold! He loved the rushing water around his swollen knees and sore back! I had to get a couple of pictures of the event.

We'll post an update later this week. Grant has a couple of weeks left of delayed intensification before reaching the "Maintenance" phase. He'll be accessed this morning by home health, and will keep his port accessed until Friday again to have additional chemo at home. He did this last week, and by Friday he was ready to "get the needle out" as he says. The Ara-C chemo from last week took his Fuzzy Wuzzy hair out in less than 24 hours, so Grant is sporting the Yul Brenner bald-is-beautiful head. Doesn't seem to bother him at all!

Thanks again for your love and support. Hope everyone had a wonderful Thanksgiving. We did, and our prayers always give thanks that Grant is making continued progress.

For Leanne!

My friend Leanne called yesterday and said that she had been waiting patiently for pictures from my trip to San Diego. I am sorry for the delay!! It seems like forever since my trip, but I will try to recall some of the details.

Nina and I flew out of New Bern on Thursday morning at 5:30am, which meant we had to be there at 4:30 am, which meant we had to leave Otway at 3:30 am, which meant that Nina had to leave Cedar Island at 2:45 am! We had an early start on the day, to say the least. Our flight from New Bern to Charlotte was a quick one, but our plane was quite small, and our seats were beside the propellers, so it was a loud hour! We had a short layover in Charlotte - just enough time to eat breakfast, and then we headed for Pheonix. We got there just in time for another breakfast, and then flew our final hour to San Diego. It was only 11:30 pacific time when we arrived, so we still had a long day ahead of us. We shuttled to our hotel, and got a sandwich at the hotel restaurant - the best $15 BLT I've ever had - and met up with Kelly for a little while. We said hello to the crew from Cedar Island, and then headed to our room and took a much needed nap.

Thursday evening was the rehearsal. Kelly picked us up at the hotel and we made our way to the Naval Base at San Diego Harbor. It was such a beautiful evening and although we were a little chilly, we had a great time.

The rehearsal dinner was at a lovely house that Kelly's mom had rented for the week. We were so tired by the time the dinner started, but enjoyed visiting with all of our friends who were in town for the wedding. I was thrilled to see my good friend Michael Paul Goodwin, who is stationed in Alaska right now. He was preparing for a deployment to Iraq, so we were so happy to get to visit before he left. We also visited with Corey Patton, who I haven't seen in at least 10 years. He is all grown up and quite a sophisticated fellow! We always knew that Corey would grow up to be a wonderful man! We had a great time with Aunt Fran and her family. I felt very safe during my trip knowing that Uncle Paul was there to take care of me if I needed anything. *** As a side note, Fran is my Aunt Drexell's sister, which means that she is not "legally" my aunt, but that doesn't really matter. She and her sweet husband, Paul have always treated me like their own!***

So, Friday was the big day. We got up early and watched some cartoons with Courtney and her son Garret and Adron's little one Samantha. They headed out for a day at the harbor and Courtney, Nina and I walked a couple of blocks to get a fast food breakfast. Kelly picked us up around 10 am, and we went back to the "big house" and started preparations for the ceremony. Kelly had done an awesome job of organizing everything herself, but that also meant that she had lots to do on the day of the ceremony. So, we spent the day taking care of details and then headed back over the to Harbor to do pictures and prepare for the wedding. The ceremony was beautiful and simple and perfect and just like Kelly!

We danced the night away at the receptionl. Samantha was my dance partner for most of the evening. She was a real trooper and lasted almost all night. The picture of her sleeping was taken at about 11:30 pm when she could take it no more.

Our flight on Saturday morning left at 7:00 am which meant we had another very early morning! Our flights all ran on time, but it was a long day. We had a 3 hour layover in Charlotte, so we at dinner at Chili's and rested for a while.

We arrived home around midnight, very tired, and very happy to be home!

We've got the week off!

Grant was count dependent this week, so we did lab work yesterday. His ANC needed to be up to .75 before he could continue with more chemo, and we weighed in at .6, so we get the week off!

I am actually relieved that we get another couple of days before we start our 2 weeks of Ara-C. Grant is just starting to act like himself, post steroids, and we could use a little normalcy before starting again. The Ara-C is the only chemo that actually makes Grant sick. We will do it for 4 days in a row for two weeks starting next Tuesday. This will be our last big punch of chemo before Maintenance is scheduled to begin. On our current schedule, and barring any unforeseen hospital stays for fever or infection, Maintenance will start on December 18th. The best Christmas present ever!

As for today, Grant will go on his first field trip with his Kindergarten class. We missed his first trip because he was at UNC doing Peg shots! So, today he will get to go to the Beaufort Historic Grounds and learn about making butter, and milking cows, and early Thanksgivings in North Carolina. Kevin will do the bus ride with him and I will meet them in town. Grant is very excited to ride the bus. I am not so excited about him riding the bus, but he has agreed to wear a mask, so a compromise has been reached!

We will post pictures later.

Have a wonderful Fall day!

Before & After

We are so excited to report that we are finished with steroids! I can't express to you how totally miserable this experience has been! When Grant was first diagnosed, and we met our friend Colby, his mom, Hope, told me that if we could handle steroids, we could handle anything! Well, let me just say, "Amen!" Ahhhhghh! We hate Dexamethasone! I thought that nothing could be worse than the Prednisone, but I was wrong!

In other news, we were thrilled that Eden was baptized last Sunday by her dad. She was a beautiful little princess and we had a great time with all of our friends and family at her dinner. Eden is a big help to her very tired mama and has been such a trooper through all of our trips and Dr's visits with Grant. Even if she does refuse to do her part in the Primary program next Sunday, she's still a good girl!

We have the week off from chemo this week and are count dependent next week, so we are enjoying a little break. Hopefully Grant will come down off this steroid high and return to normal by the end of the week. Cross your fingers!

Hungry!

So, we are at day 11 of steroids and the hunger has begun! Today has been an all-day eating marathon and its barely dinner time! I think that we are on the 4th bowl of grits for the day. We've also made pumpkin pies, had chicken tenders and potato wedges from Outer Island, snacked on popcorn and downed at least a gallon of chocolate milk!

I had a great time on my trip to San Diego. It was a quick trip and I am still suffering from sleep deprivation, but I had the best time with Nina and Aunt Fran's crew! I was able to visit with lots of friends from high school and was really happy to see Kelly and her new husband, Eric. We had no idea that San Diego was burning while we were there! Kelly lives in the heart of downtown, so I am confident that her apartment is out of danger. She is in Bali this week on her honeymoon, so she is safe and sound!!!

We have been enjoying a week of rain. The mums and lawn are loving it, but my Halloween lights keep shorting themselves out! Frustrating.....

We had a fine trip to the clinic this week. We left around 6:00 am and made our way home around 9:00 pm. Jacob went along for the ride and made life "interesting" to say the least. By the time we made it to Goldsboro he had already dumped a full chocolate milk out on himself, so we made a stop by Leah's house for him to change clothes. Leah was a brave soul and kept Jake for the rest of the day, so the 3 hour stay at the clinic was not nearly as hairy as it could have been. It was a very busy day, as Dr. Gold had been out of town for a week, so the 3o minutes worth of chemo ended up taking quite a bit longer. You just never know!

We are scheduled for clinic next week on Wednesday - Halloween! Grant is planning on dressing up for the day and wearing his Redskins football uniform. The "craft lady" is planning a Halloween party for the kids, so he is OK with missing his school stuff. We probably are done with school for the next couple of weeks, anyway. We will start home-schooling next week. Hopefully by January we will have good enough counts to start at Smyrna again. Grant loves his teachers and classmates and is not so thrilled about not getting to see everyone daily.

The exciting news of the week is that Eden Elizabeth will be getting baptized on Sunday after church. In our faith, children are baptized and become official members of the church when they turn 8 years old. Eden is very excited! Pa and Grandma have bought her the most beautiful new white dress and she looks like an angel in it! Kevin will perform the baptism and her friends from Primary will be singing. We are also planning a family "spread dinner" afterwards, and are really excited about spending time with our extended family and friends.

I will post pictures soon!

Delayed Intensification begins

Hello friends and family.

I figured it was past time for an update on Grant. It has been a bit more hectic than usual, and Emily has been so very sad about Michael McKinney's passing. We know that each child has a different road to travel and all will have very different outcomes. Yet, these special children become a part of your life almost the moment you meet them, and there is a bond between the parents of the sick children that you can almost feel when you are in their presence.

To further add to the reality of it all, when Emily was up in Chapel Hill this week with Grant, she asked about a sweet little 8 year old guy- Bryson Parry from Wilmington, who we met in May after he relapsed from his leukemia after 3 years of treatment. After a relapse, a bone marrow transplant becomes the best treatment to save the life of the child, but you have to get the patient back into remission before the doctors will transplant. Well, after a grueling summer of chemo, Bryson got his transplant in mid-September and had been in the hospital since then. After trying to find out what room he was in up on the fifth floor of Children's hospital, Em found out that Bryson died two weeks ago, and so it was another very sad day.

But, we continue to be encouraged by all of Grant's numbers. He had an ear infection last week and had complained with headache and back pain, so Em took him to Dr. Knelson in Morehead and they went on and ran a blood panel on him just to be safe. His counts were alright, although his hemoglobin was 7.8, close to needing another blood transfusion. But Dr. Blatt felt like his numbers would improve over the weekend and Grant would be ready to begin this phase of treatment on schedule.

Home health came Monday, and his numbers were high enough to begin delayed intensification. Kevin, Em, and Grant left Monday evening for an early Tuesday appointment in Chapel Hill. He received the first meds of this protocol, along with a spinal tap, bone marrow aspirate, flu shot, and echocardiogram to be sure that the last phase had not damaged his heart and liver too much. Everything checked out normal, and the Nelson's got home yesterday evening.

Today is Eden's 8th birthday. She is such a joy to our family, and the oldest grandchild. Happy birthday Edie Pie. Emily took Eden and 7 little girls to Pizza Inn this evening for a little party. We will have a family party and dinner after Eden's baptism next Sunday.

Grant will have to return to Chapel Hill on Friday this week for the dreaded PEG shots in the legs. Then back to the clinic next week for more meds. The steroids also began again yesterday, so we are expecting the swelling and balding Grant to reappear after a few lean months. Thankfully, Grant should finish this stage right before Christmas, and then will head into the stage which is designed to kill any remaining leukemia cells which can hide in the central nervous system or other places for a number of years. This final stage- called "Maintenance" will continue for 3 more years. It will not be as rigorous as right now, and life will be more normal for the most part.

Our family is so very grateful for all of the blessings that Grant has received, and for the successful way that his body has responded to the drugs. Mean as they are, they are doing what they are supposed to do. Grant will need alot of patience for the next few weeks, he feels pretty rotten right now, and is crying for extended periods of time for no apparent reason. Well- yes, it is apparent- he's taking enough medicine to keep most of us in the bed all day.

OK- I think I will wrap this up for now. God bless Grant and all of the children fighting to beat this disease. It's pretty ruthless, we've come to understand too well this week. Please know how your support buoys up the Nelson crew. It's gonna be ok.