Happy Days!

Happy 9th Anniversary to Emily and Kevin! May the next 9 years be as fun as the first!

Happy ~th Birthday to Emily! Your birthday present is coming...

Home from the clinic!

So, its been quite a day, but we are home at last! We spent the night with Leah in Raleigh last night, and got to the clinic around 8:00 am. Grant is always a little queezy when we go to the clinic - his nervous stomach often gets the best of him. I can't imagine where he gets this tendency from;) So, after some anti-nausea meds and a very fun-filled sedation for a spinal tap and IT Methotrexate, we hung out for a while in the recovery room and got a little more anti-nausea meds and some Vincristine. We got a chance to visit our friend Colby and his mom and our friend John from Garner. We spent most of the day passing out Christmas gifts to our nurses and doctors.

The good news of the day is that Grant has been cleared to start school again next week, another baby step back to normalcy! His counts still continue to look good and he remains a textbook patient.

We had an OK trip home, until we hit Walmart to get prescriptions filled. This is when the nausea got the best of my little man! Fortunately, we were already back in the car AND we were at Walmart, so new clothes were only one swipe of Grandma's credit card away. You just can't script this stuff!

So, we are back at home now. My sweet husband has taken down my oh-so-dead Christmas tree for me! He's a good boy! Maybe tomorrow I'll get all of the Christmas toys to the proper bedrooms, and my house will begin to look a little more normal! And hopefully soon, life will return to a little more normal too.

Our next clinic visit will be January 22. We will continue to do daily chemo (steroids, mercaptopurine, anti-biotics, etc...) at home. Some of his meds will be do everyday for the next 3 years! Popping pills has become second nature for Grant, so he doesn't mind.

So, if I don't get a chance to post again soon, Happy New Year to one and all! May 2008 kick the pants off of 2007!!!!!

Merry Christmas from the Nelsons

Dear Friends and Family,

Merry Christmas from the Nelsons. We hope this letter finds you happy,healthy, and well. 2007 has been quite a year for our family! We thank our Heavenly Father for all of our many blessings and for the great love we have felt from our many friends this year.

As most of you know, Grant was diagnosed with T-Cell Acute Lymphoblastic Leukemia in late April, just two weeks shy of his 5th birthday. As you may imagine, we were completely devastated! However, Grant responded very quickly to treatment and was in a technical remission in a week, and a full remission at the end of this first 28 days of chemotherapy. Since April he has undergone weekly chemotherapy at UNC Children’s hospital in Chapel Hill. After Christmas we will begin a more relaxed monthly schedule that will continue for the next 3 years. Grant has been a model patient and has an excellent prognosis for a full recovery. We are so grateful to the physicians, nurses, and staff who have helped to save his life and who have guided us through this tedious process. We also send our love to our many new friends we have made at the cancer clinic and remember our dear friends whom we have lost this year.
We express our deep appreciation to all of our many friends for all of the sweet acts of kindness you have shown to us. We love you all and could not have done this without you!

The other kids are doing well. Eden is in 2nd grade and loves Sudoku puzzles and spending time with her friends. She was baptized this past October by her father and was simply beautiful in her new white dress. Jacob will be 3 in January, and is in love with two things - his Grandma Susan and his Uncle Joel’s dog, Skully. He is quite a handful and keeps his mom busy, to say the least. Kevin continues to serve as the First Counselor in the Ward Bishopric and will celebrate his 8th Anniversary with Ecolab on January 1st. As for me, I am still teaching private music lessons at the Crystal Coast School of the Arts in Morehead City and keeping busy as a stay-on-the-run-mom!

We keep Grant’s blog updated almost weekly with news and photos. Please visit his website at http://www.grantnelson.blogspot.com/ so please check in! We love hearing from our friends and family!

We pray for another good year and for the Lord’s blessings to be with us and with each of you.

With love,Emily, Kevin, Eden, Grant & Jacob

Blankets!

Good morning! We are home from our weekly clinic visit. Grant's ANC was up to 1.2 yesterday, so we are breathing a little sigh of relief and are excited to be mask-free for the week.

The highlight of our trip was delivering the blankets that the sweet sisters of the Relief Society of our church had made for the kids. We felt like real life Santa's as we got the joy of passing out the beautiful blankets! Several of the kids wrapped up in their blankets right then and there! Special thanks go to all of our friends from church, led by my "Mama Marla", who gave so lovingly of their time to make this possible.

We also were able to visit with Colby yesterday. It was the first time that we had actually seen Colby since July. He has the shadow of hair growing back, and is doing great! Colby's grandparent's house was burned by an arsonist last month, so please say a special prayer for his family. The arsonist also set fire to the Fire and Rescue building in their home town, so life is more than a little stressful for his family right now.

The rest of the week looks pretty normal. We still have shopping to do! My piano recitals are next week, so I am looking forward to some wonderful performances from my sweet students. We had a great studio class yesterday. Its always so much fun when they're all together! We are also spending lots of time getting the Christmas Program ready for church and planning our family Christmas extravaganza!

Life is good! We are thankful for all of our blessings and our wonderful friends and family!

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.

Our Friend Michael

Our dear friend Michael McKinney passed away last night due to complications from his leukemia. We are so saddened by his passing and express our deepest sympathies to his extended family and especially his mom and dad and his two younger brothers.

Today has been quite a reminder of the intensity of this battle we are fighting against leukemia. It has been a hard day, but also a day filled with gratitude for all of the blessings we have been given.

When Kevin told Grant this morning he immediately came to the kitchen table and started writing a letter for Ms. Kristi, Michael's mom. He asked me to help him spell the words, but he wrote the text as follows,

"I am sorry Michael died. I know he feels better up in heaven. Love, Grant"

I guess that just about says it all.

Childhood Cancer Awareness Month

September is Childhood Cancer Awareness month. This is a link to a video created by parents of children with cancer. It makes reference to www.curesearch.org. This is a search engine that gives the best information on childhood cancer and is the home of the Children's Oncology Group. They are the sponsor of the clinical trial that Grant is involved in.

If you visit curesearch.org, you can click on a link to send your state representatives a letter urging them to pass the Conquer Childhood Cancer Act. It is a very simple process, and if you chose you can use a form letter and simply sign your name.

Thanks for helping.

Homework!

Hi, everyone! We are back and home and enjoying life as normal at the moment. Our trip to the clinic was a rough one last week. Grant evidently is a hard kid to get "under" without full sedation! He had as much Fentanyl as possible, but still never went to sleep. So, we did the procedure awake!!! AAAHHHGGG! He actually did great - not nearly as bad as Eden at the dentist!

Unfortunately, the Fentanyl left him "hung over" for several days, so it was a long weekend. Finally, on Sunday, he took a 5 hour nap, and still went to bed at 10 pm, so he felt a lot better on Monday!

This picture was taken Monday afternoon while doing homework. Grant was teaching his classroom pet, Care Cat how to color! They had a great time!

We will visit the clinic again next Tuesday for our last visit in Interim Maintenance. Delayed Intensification is our next hurdle! The steroids will return for a while - as will a preoccupation with tacos and grilled cheese sandwiches, I'm afraid! A small price to pay, I guess!

Please remember our friend Michael McKinney this week. He is finishing radiation and beginning another round of chemotherapy. Michael is really sick right now. Please pray for him and his family. They will be having a fundraiser on October 20th and are currently selling t-shirts to help with hospital expenses. Click on Michael's link on our page for more information. I will post more as the fundraiser gets closer!

The coolest news of the week is that Mother Teresa and her benefactor (aka my ma and pa) purchased me a ticket to fly to San Diego for my friend Kelly's wedding in October! I will be flying out with another friend, Nina, and am just so excited!!!! We will only be gone for a couple of days, but I am looking forward to a little vacation! Kelly is a faithful watcher of Grant's blog and one of my and Kevin's very best friends, so I am thrilled to be with her on her very special day! I will be sure to post pictures!

That's about all for tonight! I'll post again soon!

Is it already Thursday?

Wow! Life is passing by "speedy quick" these days! I can't believe that it is already time for another UNC trip. We will leave this evening after I finish piano lessons. Grant will do a spinal and bone marrow in clinic tomorrow morning, and then we will head back home!

Grant has had a good week at school. He has stayed for the whole day several times, and is beginning to get into the routine of things! He is at home today so we can do his blood work and get counts before clinic. Grandma is going to Chapel Hill with us this week and he is looking forward to some quality time with his personal Santa Clause!

Jacob has had an ear infection this week. He doesn't seem to mind, however. It hasn't slowed him down very much by any means!

Eden is looking forward to cheerleading today! They are learning their dance routine this week and she is all excited about being a hip-hop dancer! She cracks me up!

I will post more after our trip! We should get our calendar for Delayed Intensification tomorrow. The end (of the weekly trips) is in sight...........

Home at last!

Hello from Otway!

We are glad to be home. These trips seem to grow longer with each passing week! Luckily, we are beginning to see an end in sight. Grant will continue this weekly schedule until sometime around Thanksgiving. And tonight, with fall in the air, Thanksgiving seems much closer than last week!

I was reflecting a little today. It was 6 years ago today that we found out that we were pregnant with Grant. It was the day after 9/11. We had been trying for another baby for over a year and were starting to get a little anxious! So, on September 12th I woke up from a night of long and weird dreams. I, like everyone else, had spent the previous day in shock and awe, glued to the TV. Needless to say, I didn't sleep much and when I did sleep, I mostly had nightmares. But - amid all of the nightmares I had a dream about my Uncle Mike.

My Uncle Mike was like my 2nd daddy! He was my special uncle who always made me feel special too! Uncle Mike had 2 girls of his own, and I was his youngest adopted neice/daughter - a position that I was glad to hold! Uncle Mike was killed in a tragic car accident when I was in college, just a few weeks after he had surprised me by coming to my senior vocal recital at ECU. That visit was the last time I ever saw him. I had often wished to dream of him and talk with him. So - on the night of September 11th, I had my most vivid Uncle Mike dream ever. He approached me in a crowded room. I looked around in shock to see if everyone else could see him, but I was the only one. He was carrying a dark little baby boy in his rough and work-worn hands. As he approached me he said, "You are! Doesn't he look a lot like me?" Then he held this beautiful, fat, dark-haired baby boy up close to his face and smiled. That was all.

I felt like Uncle Mike had sent me a message, so early on the morning of Septmeber 12th, I took an at-home test, and indeed, I was expecting. Nine months later, Uncle Mike's dark-haired boy became my baby boy, Grant.

Who could have guessed the path that Grant's life would take. Maybe Uncle Mike already knew about all of this. Could he have told me? Would it have mattered, anyway?

Too many questions for tonight.

At the moment, Grant and his brother and sister are sleeping soundly. Life seems wonderfully normal. That's what matters the most right now. And that's the way I like it.

Hello from the Hampton!

We're in Chapel Hill this evening, staying at our home away from home, The Hampton Inn. Grant is already asleep, hopefully for the night (it's 7:45pm)! He had a great morning and was quite a fun kid to be around until late this afternoon he realized that we were staying the night, and staying the night means only one thing, PEG shots! After this realization occurred, he basically became possessed! What an afternoon!

We will do the PEG shots tomorrow morning, and then head home. Jacob has had a fever today, so we are anxious to get home to help Grandma with the sick baby! Eden is enjoying her stay at Grandma's and is at cheerleading practice this evening with her favorite neighbor-friend-cousin, Chloe!

We visited with the McKinney's for little while today. They are still playing the waiting game for Michael's transplant. Please remember them in your prayers.

The best part of the day was that Grant was assigned a Pal! UNC assigns students to help with the pediatric patients during their visits to the clinic. Grant's Pal is a sweet girl named Jane Lee from Roanoke Rapids. She is a junior, and is studying to become a Physicians Assistant. She kept Grant occupied and happy during our whole clinic visit. WOW!!!! She colored with him and read books and ate Cheetos! Too much fun!!!! Jane will be paired with Grant for the rest of the semester, at least, so we are excited to welcome her to Team Super Grant!

That's all from the Hampton tonight. We will post again soon!

First Day of Kindergarten

Today was Grant's first full day of Kindergarten. He was very excited to be at school and was looking forward to a very fun day!

Eden wasn't so excited about having to take yet another picture!

Grant will also begin art classes at Crystal Coast School of the Arts today. So, after school I will shuttle Jacy to 3:30 dance class, Eden to 4:30 dance class, Grant to 4:00 art lessons, and I will teach a full afternoon of voice and piano! What a fun afternoon!

Jake has been a good boy today and allowed me to get my house a little more in order. I see an end in sight! I will never again try to organize closets in both of the kids rooms at the same time!

No clinic this week. We will be back in Chapel Hill on Monday night and do clinic on Tuesday and Wednesday. Kevin will go along for this trip and Jake will hang out with Grandma. We are looking forward to this little getaway!

I will try to get pictures of art class to post later! Until then.....

Pictures!

Finally, pictures! These are a few from Grant's recent hospital stay.

At the top - hanging out with Eden and Jake!

2nd - playing Match with Dr. Romano. We love Dr. Romano!

3rd- Grant's favorite OR nurse, Philly, who was so sweet to come and visit us on her day off!

Finally - Superman in 3D shades! Our new favorite movie is "The Adventures of Shark Boy and Lava Girl"! Its in 3D, so the glasses come in handy!


Its been another busy week for us. Eden is enjoying being back at school. I will begin piano and voice lessons at Crystal Coast School of the Arts again today. Grant will do his first day of Kindergarten on Thursday, followed by a clinic visit on Friday! Next week, Grant will start school full time and also start art classes at CCSA! His is a happy boy!

Our wonderful news of the week is that Kyle, my brother in law, Aly's husband, received passing scores from his NC Bar exam, so he is an official lawyer in practice!! Many congratulations to the Dart family from the Nelsons! We are so excited!

I will post school pictures later in the week. Until then....

Watch out Smyrna - Here Comes Grant!

Good morning! We are back at home after a very fine trip! Jacob joined us for our journey this week - I need not say more!

Grant started the week with a home health visit on Monday. His counts look great this week. ANC is 1.2! Wow - this is as high as he's been in a long time! So, with good counts we were set to begin Interim Maintenance. We started off Tuesday with a spinal tap and bone marrow aspirate. Aside from being a grumpy bug following sedation, we had a fine trip and were in and out in 3 hours. The biggest surprise on Tuesday was that we found out that Grant can start Kindergarten! I was checking with our nurse practitioner, Ms. Kristie about paperwork for homeschooling, and she said that Grant's counts are actually high enough right now to at least begin the school year. So, we are all very excited, especially Grant! He even decided that big boys who go to school need to sleep in their own beds, so last night he slept in his bed alone for the first time since he was diagnosed!!! Its been an exciting week!

Yesterday we had a quick visit at the clinic for the dreaded Peg shots, and then started home. Grant did very well, and was only unpleasant during the actual procedure. I think about how brave he is! It has to be so hard to be pleasant knowing what lies ahead of him as we approach the clinic every week He really does a remarkable job....

So, open house at Smyrna is this evening. We will visit with Ms. Vicky, Grant's kindergarten teacher (and Kevin's cousin and one of our all around favorite people!). We are also looking forward to Eden starting 2nd grade with Ms. Beth Montgomery and Aunt Fran! It has been a long summer and school starting again seems like a refreshing beginning!

I have lots of pictures to post, but I need a while to download them, so they will have to wait until later! I promise to post soon!

To help understand the language...

We talk alot about Grant's counts- especially his ANC or his absolute neutrophil count. I found a nice definition on one of the cancer sites, so you can get an idea of this "counts" stuff! We're alot smarter now than we were a few months ago...


Definition of Absolute neutrophil count

Absolute neutrophil count: The real number of white blood cells (WBCs) that are neutrophils. The absolute neutrophil count is commonly called the ANC.

The ANC is not measured directly. It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3).

Sample calculation of the ANC:
WBC count: 6,000 cells/mm3 of blood
Segs: 30% of the WBCs
Bands: 3% of the WBCs
Neutrophils (segs + bands): 33% of the WBCs
ANC: 33% X 6,000 = 2,000/mm3
ANC of 2,000/mm3, by convention = 2.0
Normal range: 1.5 to 8.0 (1,500 to 8,000/mm3)
Interpretation: Normal

Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.

In practical clinical terms, a normal ANC is 1.5 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500. A safe ANC means that the patient's activities do not need to be restricted (on the basis of the ANC).

Now- I bet you feel smarter too! Grant is doing fine since getting home on Monday. He is scheduled to begin the next round of chemo next week, if his "counts" are high enough. His ANC needs to be .75, when he left the hospital it was .2, so we hope his bones are producing some fine marrow that is growing like it should.

Emily's sister, Joella, found out Tuesday she is having a baby boy. That will be 2 girls and 2 boys for Joella and James. They are so thrilled! It's always a miracle to be able to watch that little baby living inside Joella move around, wiggle his fingers... oh me, how wonderful!! So, it's been a fine week. My sweet Mike is flying into Raleigh this evening after his summer at BYU studying Thai. We've missed him around here lots and lots. We'll report later, bye for now!

'Tis true!

We're coming home!

Aside from the fact that Grant is freaking out about having to have his port de-accessed, its been a fine morning! Hopefully the needle will be out soon and the "mad spell" will see its end.

We are on strict instructions for no visitors for a while, so please call and say hello. Grant will have his counts read again by home health on Monday, and hopefully after that he will be able to venture out in public and say hello to all of his friends and family!

Love to you all!

*****A glimmer of hope******

I have heard a rumor - although a pretty substantiated rumor - that we may be leaving today!

Dr. Bell and Dr. Marks have both hinted that Dr. Gold, today's Attending Dr., suggested that we may be able to leave. All of Grant's counts continue to rise beautifully with the exception of his ANC, which is a pitiful .2 today. However, he seems to be trending up and has had no sign of a fever since last Tuesday.

So - we are cautiously optimistic at this point!

I will update when I know more!

...until you think...

I've been feeling a little sick this week, probably because of the sudden drop in temperatures we're experiencing in the Southeast. But every time I start complaining or feeling sorry for myself, I try to remember that a few sniffles and sneezes with an occasional cough is really pathetic compared to how Grant feels when he wakes up, or before he goes to sleep, or when he rides in a car...and that's almost every day. Shoot, it's really pathetic compared to just the inconvenience it is for Emily and Grant, and Mama or Kevin to drive up to Chapel Hill every week, waiting in lines, sleeping in hotels, and watching others struggle through the same roller-coaster ride. But they love Grant, as do we, and they show it with the patience and compassion that they show to so many of us that aren't nearly as inconvenienced by all of this as they are.

I fear that sometimes we (I'm included) take for granted how positive and hopeful Emily, Kevin, and Mama (and Grant, sometimes...when he's not growling at me) remain through this ordeal. I don't think we can praise them enough for how they've helped us to remain calm by being happy and cheerful themselves, even though we know that sometimes they're hurting inside.

Yes, it's easy to complain about sniffles, sneezes, and the occasional cough...until you think about SuperGrant and his SuperFamily!

Saturday morning

Well, those ANC numbers just refuse to go up. The doctors say it will be at least Monday before they will let Grant come home. Then he's scheduled to begin the next round of treatment on Tuesday which also involves staying the hospital for 2 days. Bottom line- ain't going nowhere yet.

Give Em a call if you have a moment. They are pretty weary today. 919-966-4335. The cell phones don't get much signal in the hospital so if you try her cell, she probably will not get a ring.

Love to you all. Thanks for all the prayers.

Friday Evening...........

Quick update....

Grant has had a great afternoon. He has enjoyed squawking like a chicken and singing "Who Let the Dogs Out" for all of the nurses and Drs.

Dr. Romano is on call tonight and has hinted that if Grant's counts still look better tomorrow we will be able to go home. The nurses will draw labs at 4 am, so we should have results by the time we wake up in the morning.

Kevin is here and Grant is excited!

Friday!

Its Friday afternoon and we are still here! We hope to be able to come home tomorrow. Grant hasn't had a fever for several days now, and his ANC finally seems to be on the move upward. His white blood cell count, hemoglobin, platelet count, and monocyte count were all considerably better today, and his ANC had gone from 0.0 to 0.1. An increase in WBC and monocyte counts is usually a precurser to an increase in ANC, so we are hopeful that we will have a little jump up tomorrow. If so, we will be heading home.

Mama is on her way back to the island now. Kevin will come up to Chapel Hill again this evening after work. Eden is enjoying the day at Emily McGee's house. She is in heaven with Emily and Ms. Martha! Jake is spending the day with Joella. Grandma will take over as his guardian when she gets home. Joella will be spending the afternoon at the blood drive at church.

Grant had a special visit from his friend Phyllis today. She was his nurse in the pediatric operating room during the week of his diagnosis. She drew lots of pictures with her patient and promised Grant a drawing of a basketball player the last time we saw her. Since then, for nearly 3 months now, everytime we have come up to clinic Grant has asked about Phyllis. We have tried to find her on several occasions, but this is a really big place and we hadn't had much luck. SO - yesterday I went down to the 2nd floor to do some laundry and ran into Phyllis in the hall. She was so kind and remembered her promise to Grant. So, today, in 101 degree temperatures, and on her day off, Phyllis came back to the hospital to visit Grant! I really can't express to everyone how kind all of the staff of the Children's Hospital has been to us. We feel so blessed to have found our way here! Many thanks, Phylly!!!

I will update again when I know more!

Thursday morning

Hello from Chapel Hill- Grant is still in 5C06... just hanging out. We had hoped that his ANC would be up today- they want it to be about .5 before he can leave. Unfortunately, today it is the lowest it can go- 0.0. So- at least another day or so.

Grant is watching "The Goonies" from the 1990's- I think Em and I are enjoying it more than he is, but every once in a while they throw in a four letter word, and it really catches him attention!!! Mild, but definitely four letter...

Well, it's just a waiting game. Thanks for checking in. Grant's little friend, Colby is going home today. He's been here three weeks, and his mama has an infant- they are really happy!!

Over and out for now.

Tuesday night.....

It almost 11pm and the patient and I are heading to bed. Grant only had a fever for a couple of hours, and a low grade one at that, but it was enough for the doctors to want to order more blood cultures. So, the fever went down on its own with no Tylenol and we spent the evening watching Spiderman.

Kevin is home tonight with the other kids. Grandma Susan will make her way up here tomorrow. We will see how the day goes and what our hopes are for a departure date!

I will write again in the morning!

Tuesday morning!

Good morning, everyone!

Grant and Kevin are still sleeping. Its 7:30 am, so things will start booming around this place pretty soon.

The good news is that we had no fevers over night. He had gone all day yesterday with only a low grade temp, but then around supper time spiked another 101.6. They gave him more Tylenol and the fever went away very quickly. I told them that he is very prone to dinner time fevers. I think that his body just gets tired by that time of day!

So far all of his blood and urine cultures have come back negative for bacteria, which is wonderful. We are here for at least another day so that the cultures can be tested again at 48 hours. Unfortunately, if Grant gets another fever today, they will have to re-draw cultures again and start the 48 hours over! This is rotten on two accounts - having to stay another couple of days, and having to get stuck in the arm again! So, we are praying for no more fever!

I visited with Colby's mom for a little while last night. He has been here for almost 3 weeks now, waiting for his ANC to come up. As of yesterday it was still 0.0. He has done some heavy rounds of Ara-C this month, and his white blood cells can't seem to recover. Today, if Grant is fever-free, we will mask him up and let him walk next door to visit!

Michael should also be back today. He will do a spinal this morning in the clinic and then be admitted for the same Ara-C treatment that has kept Colby here so long!

There is also another young man on the floor who is a member of the church from Garner. His brother, Mike Creasy was was in the singles group at NC State at the same time that we Hancock girls were at ECU. We will go and meet him today... I think his name is John. He is about a month behind Grant in treatment, and has been in-patient for at least the last week. We have spoken with his mom and sister in clinic before, not realizing our connection.

Our favorite part of this trip has been that Dr. Romano is back! She had been on rounds at Wake Med for the past 2 months, so we haven't seen her in a while. She visited several times yesterday, and last night her sweet husband Jake went to Walmart and got Grant some Lincoln Logs and a Happy Meal! Grant was in heaven! He had wanted to go upstairs and play in the playroom all day, but had to stay on the 5th floor because of his fever. The only toy he really wanted to play with was the set of Lincoln Logs, so Jake took care of that wish!

In a strange way, we are very comfortable up here! When we got here in the middle of the night it was kind of like getting home after a long ride. We know everyone, and know where everything is. We are also lucky to be right across the hall from the pantry, so we are hooked up! So, don't worry about us. We are on a semi-vacation!!!!

I will update more later on. Grant wouldn't let me get on the computer last night. He was too busy playing games, and I fell asleep while waiting for my turn!!!

Love to you all!

A sudden visit to Chapel Hill...

Tonight, Grant came down with a pretty high fever. Emily and Mama took him in to Carteret General at about 9:00, and Mama has just called to tell us that they're sending him to Chapel Hill tonight. Kevin is on his way in, to join Grant and Emily, and Mama's headed over to their house to stay with the other kids. Please keep them all in your prayers. He wasn't really feeling very good today, and there's no need to worry, but his numbers are too low to not go ahead up there and get a blood transfusion tonight. We'll keep the site updated with any other information.

Back at home again!

Hello friends!

We are back at home after another day trip to UNC. Grant was scheduled for only one medicine today. His numbers were not great, but OK and as expected, so we are able to make it a quick trip with no transfusions!

Grant finished his second phase of treatment, Consolidation, today. He continues to be a text-book patient, and has grown much more accustomed to the happenings of the clinic. He was able to have his port accessed today with no tears - quite the accomplishment! I am including a picture of what a port looks like! His is inserted in his left chest wall. He calls it his button! When he receives his chemo, his port is accessed through the skin with a needle that is about an inch and a half long, connected to an IV line. His meds are either pushed through the line with a syringe, or run through an IV bag with fluids, depending on what med he is getting! Today we did Vincristine, a simple push with a syringe, so it was a quick day!

We will be lab dependent next week, meaning that home health will visit us on Monday and do lab work. Depending on his blood counts, we will either have a week off, or begin phase three, Interim Maintenance. Most likely we will have the week off as he is still very neutropenic this week, with an ANC of .1. His hemoglobin was better this week, post transfusion last week, and was up to 7.9. His platelets are still low, 42, so he has had a lot of bruising this week. He and Jake are a little rough, and Grant has the bruises on his shins to prove it! In order to begin Interim Maintenance, his ANC will need to be .75, so it is unlikely that we will get there in a week. It is completely expected that this may be the case, though, so its nothing to worry about.

Interim Maintenance will be a little less travel intensive. We do know that at least twice we will have to spend two nights in Chapel Hill in order to get all of his medicines in the correct order and at the correct time interval, but we will be able to spend the night at a hotel rather than the hospital. This phase focuses mainly on receiving Methotrexate both orally and directly into his spinal column. His protocol allows for one of two arms of treatment in this phase. Patients are randomly assigned into either a standard or an experimental arm of treatment. Grant randomized into the standard arm which means that his Methotrexate will be at a standard dosage instead of a higher experimental dosage. This means that we will have an easier go of it than some. The experimental arm would have necesitated several inpatient hospital stays. We are grateful for the luck of the draw!

We were happy to visit with Michael McKinney and his mom, Kristi for a couple of minutes today. Please remember Michael in your prayers. The doctors are working their best the get him into remission again so that he can receive his bone marrow transplant. His younger brother will be his donor, and his family is praying fervently that the transplant will be a complete success. Chances of a successful transplant are much better when the recipient is cancer free. Michael was in remission until May and the doctors have been working to get him there again all summer. He is having to do serious and very intensive chemo nearly all the time and has spent nearly all summer in Chapel Hill. He was hospitalized again today and will do inpatient chemo through the rest of this week. Please remember Michael and his family.

In other news, Kevin is in Charlotte for work for a couple of days. I am hoping to spend some time at home with the kids doing some much needed organizing and preparing for the start of school! If the mosquitoes would just go away I could send the kids outside, but it seems as though we are destined to spend the rest of the summer trapped inside!

Joella and James are home from their trip to London. Aside from the crummy food, they had a wonderful visit! Their kids were little angels in their absence and had a great week with both Granny Robin and Grandma Susan! We are all very happy that they have returned!

Aly and Kyle are vacationing in Myrtle Beach and Charleston this week. Kyle is very relieved to have the NC Bar behind him, and is anxious for his results which will hopefully be mailed in 4 to 6 weeks! He and Aly are enjoying a respite in the absence of the need for 18 hours a day of intensive study! They both deserve some time off!

Rodney started his new job at Genworth yesterday. He is very impressed with his associates at work and is looking forward to this new career! Leah is looking forward to her new house, and is missing her sweet husband! We are happy to have her here, but know that she is so excited to return to a more normal routine! Having a newborn is never easy, but her circumstances over the past few weeks have been even more trying! So, hopefully in another month to six weeks she will be able to move into her dream house with her dream family and life will be just - "dreamy"!!! Until then, I really am digging having Carter to hug and kiss on whenever I so desire! And Grant is just in little boy heaven with Jackson around to dress up and be super heroes with!

Mike will be home from summer school at BYU in another 2 weeks or so! We will all the very happy to have our Mikey home! He is our constant entertainment and lightens the mood in every situation!

Joel is spending his days helping Pa with work. Nearly all of daddy's home owners' policies have to be rewritten this summer. As a result, he has to redo paperwork and photos for all of his clients! That's a whole lot of people! Joel is doing a great job of taking photos, and is the world's best babysitting uncle. The boys can't wait for him to take them on a bike ride whenever we visit Grandma's house!

Grandma is spending her summer in the kitchen. She seems to never leave that place! Luckily, its a really nice kitchen, so we don't feel so bad for her! She is the best mama ever, and is supported in her endeavors by the world's best Pa! I have been reading Pa's book again this week and once again I am so impressed by not only his lofty intellect and beautiful writing style, but mostly the depth of his conviction and testimony and his love for the Gospel of Jesus Christ. I am so blessed to be his little girl!

So - I think I've caught up on nearly everyone. Its nearly bedtime and I am a tired mama tonight, so I will end here. Thanks again to everyone for your love and friendship! Life is good!

Long, but successful trip

Hey everyone!

Well, this week's one day trip turned into a two day marathon. Grant has been pretty pale for a week, and yesterday we found out why... his hemoglobin was down to 5.2, his white cells, platelets, and neutrophils were barely there also. It is to be expected during this phase of treatment, it's just part of it.

So, the doctors felt it best to give him platelets yesterday along with the chemo (several types, including the dreaded PEG shots in the legs- Grant hates them... it took 2 nurses, Emily and me holding him down to get them done. YUCK.) Anyway, he had slight fever while getting the platelets, so there was some concern. But, the fever left, and after the doctor and nurses gave Emily very specific instructions for the night, we were able to leave the clinic at 5:00 pm, with orders to come for a blood transfusion in the morning.

Em and Grant opted to go see the new Transformer movie after a little supper, and I went shopping nearby the theater for some frames to put my grandchildren's pictures in. They enjoyed the movie, but Grant was so weak after arriving at the hotel, Em had to wipe him down with cold cloths to revive him a bit.

We slept pretty good, but Grant woke up nauseated and quite unhappy. He was throwing up by the time he got up to the second floor of the clinic where he receives treatment. It took a little while to start the blood transfusion after arriving back at the clinic, but shortly after, Grant started looking and acting better. We left the clinic about 12:45 and Grant was asleep in the car before we got back on I-40.

The thing about these trips- Grant is so very fortunate to be doing as well as he is. We see so many very sick children- it will just tear your heart out. Parents are doing everything they can, it's just hard. The doctors and nurses- all the staff at the clinic are just fantastic. They have wonderful skills and fabulous personalities to deal with such dire situations for so many. I have such an appreciation for them all.

Anyway- it's been a rigorous couple of days, but the trip was successful. Grant is doing well- and feeling much better this evening. He does not have to have chemo at home this week, so we are looking forward to a better week. He will return to Chapel Hill next Tuesday.

Thanks for checking in- thanks for your love and prayers.

Cowboy Grant!

Saturday we had a celebration at church for the pioneers who cross the plains in the 1800's as well as the pioneer church members here on Harkers Island. Grant was a terrific cowboy- in the picture he is sitting in the handcart wagon made some years ago by JB Brooks and Heber Guthrie.

Grant has had a pretty good appetite this week, in spite of having very low numbers and already needing another blood transfusion. He's mighty pale, big circles under his eyes- and kinda fussy. Aly took a bunch of pictures of the children- here's one of Grant- "doctored" up a bit so he wouldn't look so tired.

Tomorrow is the weekly trip to Chapel Hill. We'll report tomorrow evening on the day.

No trip this week!

Hello to all! We are enjoying our Tuesday of no travel! Grant will do his medicines at home this week with his nurse, Ms. Janine. We will visit Chapel Hill again next week! Janine will come tomorrow morning and access Grant's port. We are hoping for a smoother ride than our last try! He will do Ara-C at home tomorrow through Saturday.

In general Grant has felt much better since our trip to UNC last Wednesday. He was severely dehydrated and was very nauseous as a result. His blood work showed that he probably was fighting a stomach virus that was causing the severe nausea. Following a long day of fluids he felt much better and was even able to eat some "Chicky Fried Chicken" (Kentucky Fried Chicken) on our trip home. His appetite has been much better this week and we are hoping for no weight loss! He is quite a skinny little man these days.

In other news, our little Eden has been spending the week in Charleston with her Aunt Rachel and Uncle Jason. She is having a blast and has enjoyed helping with Isabelle. We will travel down to SC this weekend to pick her up. Grant is super excited to see Bobo's (Rachel's) house and visit with Kalani - his favorite dog!

Jacob is as wild as humanly possible and spends his days finding all sorts of trouble. If he wasn't just the sweetest kid ever, I would consider sending him back! BUT - he IS the sweetest kid ever, so I guess we'll keep him!

In Hancock family news, Rodney, Leah's husband, found out yesterday that he will begin a new career with Genworth Financial in two weeks. We are all so excited and thrilled for the whole Steelman family! They will be able to complete the purchase of their new dream-home in Rollesville in mid-August!!! Rodney will go back to Raleigh to begin the new job and Leah and the boys will remain on the island until the house is finished. So, summer vacation is now nothing but a party! Gone is the stress of finding a new job! Congratulations Rod!

We have Pioneer Day on Saturday at church. Surely some very funny photos will emerge from this experience! We will post! Until then....

Long day at the clinic

Hey family and friends,
Grant is back home after a long day yesterday. He had lost another 3 pounds this week and was dehydrated and nauseated while arriving at the clinic. Emily said that after receiving IV fluids and a big dose of nausea medicine, he was able to complete the medications that were scheduled. He slept alot while receiving the medicines and IV's and then slept another 3 hours on the return trip.

I'm sure Emily will write more later, but in general- Grant is where the doctors want him to be right now, but he still does not feel great most of the time. The Nelson crew is very patient with their patient- so we are understanding better than ever, "Patience is a virtue!"

Hopefully he will be feeling better after the fluids. Keep them all in your prayers, especially Grant.

Love to all of you.
Susan

Crafty Tuesday!

Grant is feeling well today after a rough start with home health this morning! His butterflies got the best of him while he was having his labs drawn this morning, and we both ended up needing showers! All that needs to be said is "red kool aid"!

The good news is that his counts are up and we can start chemo again tomorrow! He will have another long day. We will skip the spinal tap this time and will do Ara-C and Cytoxin. The Cytoxin requires that we spend most of the day in the clinic, so we will probably be in clinic for 6 to 8 hours. We did this medicine the day that Carter was born as well. Five weeks pass by so quickly!

Grant had a great time painting the letters of his name this morning. We are hoping that the new decor will inspire him to sleep in his bed once again. We have had a hard time with sleeping arrangements since his diagnosis. His bedroom is upstairs and he doesn't like being that far away from mom and dad, so he sleeps on the couch most nights! We hope this habit doesn't last too much longer!

We will be leaving for Chapel Hill in a few hours. Eden and Jake will spend the night with my mom and dad. We also send our thanks to Mr. and Mrs. Mother Teresa for the new camera we received last night. Ours met an untimely demise several weeks ago in an unfortunate collision with the tire of Grandma's van! We are very grateful for our new one. It takes great photos! My parents are the best in all parent-dom!

We will post more following our appointment tomorrow. Until then, we hope all of our eastern NC friends enjoy this long-awaited rainy weather! Grow grass, grow!

Grant looking fine!

Thought you would enjoy seeing a picture of Grant at the picnic last evening. He looked the best I can remember in a long while!!

Happy 4th of July!

Hi, everyone and happy 4th to you all!

We are back at home today. On Monday, Grant did bloodwork with our home-health nurse, Ms. Janine. It was his first time having his port accessed at home and he was a real trooper. We sang "Fuzzy Wuzzy" and all was well. His results came back that he was still very neutropenic and anemic, so Dr. Blatt cancelled chemo for this week. Instead, we did a blood transfusion at the clinic on Tuesday. Getting blood makes for a long day, but it also makes for a much happier little patient. Grant already seems to be feeling much better and even has some color back in his lips today.

We started off our day today with a quick visit with Kevin's Grandaddy Earl who is a World War II veteran and very proud American. We wished him a great 4th and picked up Eden, who had spent the night with Marmee (Kevin's mom, Bonnie). Bonnie takes care of both her mother and father. Nanna, (Evelyn - Kevin's grandma) suffers from Alzheimer's and now lives with Bonnie. They spend several days a week over at Earl's home taking care of him. Marmee is very busy, but loves visits with her sweet grandkids!

We have spent the rest of the day playing in the water. Grant and Kevin took a short boat ride with Joella's family this morning, and then came back to Grandma's. We then spent a couple of hours up at Aunt Drexel's pool with Aly's family and Joel. To top off our afternoon, we visited Glenda's dock and threw the cast net in hopes of getting some mullets for supper! Good times, but no supper! That is OK though since Grandma Susan is having everyone over for a cook-out tonight at the Hotel Hancock! The extended generations will gather together for lots of food and even more fun!

We will post pictures from the gala event! Until then, Happy 4th to one and all!

Update on Tuesday's Trip

Good morning, everyone. Grant seems to be feeling better today. Yesterday we had out typical day of nausea following chemo. He had a low grade fever for most of the day and spent a lot of time hanging out in Grandma's big bed!

We had a fine trip this week. On Monday evening Grandma, Grant and I made our way first to Raleigh to visit Leah and her family, and then on to Chapel Hill to spend the night at our new home away from home, The Hampton Inn. We got to the hotel a little early so Grant could enjoy the pool. He is learning how to doggy paddle, and thinks that pools are just the most fun ever! We hear that Grandma may be getting a pool at her house sometime this summer - a desperate ploy to get her kids and grandkids to visit her more often!!! Do you hear me laughing, mama? I hear you!

We arrived at clinic a little before 7 am and found ourselves first in line this week! We checked in with Ms. Cindy and got plugged in (had his port accessed) with Ms. Mary and went straight in for sedation and spinal tap. Grant had gotten a pretty nasty splinter earlier in the week, so I used sedation as an opportunity to "operate" on his foot! One of the many perks of our current situation! ;) The anesthesiologist was very cooperative and even helped me a little! He says that parents do all kinds of weird things when their kids are under - clean their ears, change little girls earrings, remove splinters etc.... It was funny!

Grant favored everyone in the post-op room with his best druken rendition of "Take Me Out to the Ballgame"! He's a funny kid. Does everyone know that every week I also must favor all of the nurses with singing "Fuzzy Wuzzy Was a Bear" while Grant is having his port accessed? Yes, I do! Luckily I am used to singing in front of large crowds! The clinic is so small that everyone in the whole place hears me every week!!!

His numbers were low this week, which is to be expected. His neutrophils were .4, so he is considered neutropenic and needs to be basically secluded this week. His hemoglobin was 7.7, very low as well. He is on the verge of needing a blood transfusion, but it wasn't a neccesity this week. Hopefully, his numbers will come up on their own this week.

Next week we will do blood work at home on Monday with home health to determine if he is well enough to start the second round of Ara-C in this phase of treatment. He does this one at home for 4 days in a row for two weeks. It is what causes his numbers to fall, so they don't want to begin again until his numbers are up again. We will see what happens on Monday.

Today we are going to hang out at home and enjoy the beautiful weather. If the mosquitos would go away we could really enjoy things! We thank everyone again for your continued prayers for our family and especially for Grant. Have a great weekend!

Relaxing at Grandma's House

Grant is becoming quite the model. Whenever I take out my camera, he strikes a pose! You can see that his hair is growing and he is beginning to look more and more like himself. He had a good day yesterday in Chapel Hill. I'm sure Em will update later on his exact numbers and such, but he is enjoying a day of rest and relaxation at Grandma's house today.

A note from some friends

We received this email from some friends last week, and I'd thought I'd share. Thanks so much for all the support!

I wanted to express our love for your family, especially in light of recent events with Grant’s cancer. Ever since we heard about it from Sandra, we’ve been regular visitors to the “Super Grant” blog, and we’re very, very grateful to a loving Heavenly Father who is supporting you all, especially Emily & Kevin & Grant.

I also wanted to share this with you. Matthew and I were both due for haircuts this morning, we I decided we should express our support and love for Grant my following the example of the rest of your boys. I’ve attached a picture of the result.

Please share this with Grant if you think it might help him to know that Matthew and the rest of our family are thinking of him, and praying for him and his mom & dad.

Love,
Ryan & Matthew Corradini

Tuesday's Report

Hi, everyone! I apologize for taking so long to report. Life is super busy these days.

We had a great trip to clinic this week. Kevin and Grant and I made our way to Chapel Hill on Monday evening. We left around 4pm, stopped in the terrible traffic in New Bern and ate dinner, then arrived at the Hampton Inn around 9pm. Grant was more comfortable this week with the knowledge of his upcoming appointment. He was in a fine mood for our travels and even acted more like himself at clinic.

We made #4 again this week, so we were seen very quickly. Grant and Kevin had a great time playing with his friend Doris. She is 5 and is from a Spanish speaking family. She is the only person in her family who speaks English, so we haven't really learned a lot about her situation yet. However, we do know that she thinks Grant is the coolest! And she is pretty impressed with Kevin too!

Grant's numbers were as expected this week. His WBC (white blood count) was low and ANC (absolute neutraphil count) is on the way down again. He was a 4.1 last week and down to 1.3 this week. So, he is responding just the way he should to this round of medicine. The low counts do mean that we have to be more careful about exposing Grant to any germs as he would be unable to fight off any kind of infection. His hemoglobin was also getting low, so he may need another blood transfusion next week. This is a very painless procedure, but it does take several hours, so our trip could be a longer one next Tuesday.

So, we are hanging out close to home this week. All of the kids are enjoying the warmer weather and finding plenty of time for lounging in the pool. Leah has been home this week with her family, so we are enjoying visiting with cousins and getting to know baby Carter. She will return home to Raleigh tomorrow and we will miss her and hers!

Grant's hair is growing back quite a bit these days. I think that when it initially fell out, it basically just got really thin. So, the hair that is growing back now would have been hair that stayed behind had we not shaved the whole thing! Hindsight! It does however seem to be quite a bit lighter than before. We will wait and see.

He also weighed in at 52 lbs. yesterday, so we are only 2 lbs. off of his starting weight at diagnosis. He had lost weight from all of the sickness prior to be diagnosed, so he actually looks more like himself now. All of his clothes are fitting again, so he is much happier. His larger shorts were pretty long, so he didn't like wearing them so much! Today he is wearing his favorite pirate shirt from Charleston and his camo pants and he looks very much at home in them!

We were very saddened to learn this week that Dr. John Knelson, our family pediatrician has been diagnosed with throat and esophogial cancer. He is being treated at UNC as well and will be doing radiation treaments for an extended period of time. Dr. Knelson is a sweet and kind man and also a man of great faith. We will pray for him and his family and ask that you do the same.

Life is settling into more of a normal pattern these days. We have learned the roads to Chapel Hill very well and feel very comfortable with our new friends at the children's clinic. We are reminded every week just how blessed we are to have found Grant's cancer at such an early stage of development. There are so many children who were not so fortunate and who have a very hard road of treatment.

Thanks to all of our family and friends who continue to buoy is up with your faith and friendship and acts of quiet giving. We pray that you know of our depth of gratitude.

Until next report.........

Good counts today!

Hi, everyone. We are back at home after a very fine day. Grant's counts were great today. His neutraphil count was basically normal, so we get another week of no mask! We made it to clinic by 7 am, and were #4 for sedation today, so we were out fairly quickly.

We stopped to see beautiful baby Carter in Raleigh and visited with Kevin's boss in Garner. Other than those few stops, we had a very quick trip.

Its late, so I will update more tomorrow.

Good night to all!

The Many Faces of Grant

Grant was in a funny mood the other night and did quite a bit of posing for me! He was so cute and so funny. I thought you'd all enjoy seeing his pretty face.

Saturday morning....

Good morning! Thankfully there is not much new to report today. Grant has had a very long week of much medicine! He is doing great though, and we are very excited to have the weekend off.

This has been Grant's first week of at-home chemo. He has done great, but has had more nausea because of the amount of medicine he has been receiving. Yesterday was a rough day, but it was his last day for this time, so we are looking forward to improvement today. He already felt much better last night.

Let me also take the time to thank Allen Petit and the Downeast Band for sponsoring a fundraiser in our behalf at their Spring Concert. I have known Allen since I was in middle school band and he worked with Mr. Bottoms over in Morehead City. He (Allen) has been a faithful watcher of Grant's page and wanted to do something to help, so he organized this fundraiser at his concert. We are very appreciative of his help and of the kind offerings made by so many of our friends at the concert. I keep telling Grant's doctors that we just live in the best place!!! I can't explain how blessed we feel that we chose to live and raise our family in the place where we grew up. We could not do this - fight this cancer - anywhere else! You all continue to buoy us up with your faith, your kindness, and your help.

So, today Eden has her end of season softball tournament. Zac Dart (Aly's 3 year old - and a baseball fanatic) is one excited boy to be able to see some serious ball today! Our boys are going to see Kevin's mom so we can watch Eden. Its a little too hot for Grant at the ball field today.

We will be traveling back to Chapel Hill on Monday evening. Grant will have more of a normal visit this week - spinal tap and medicines, but no 8 hour observation! I will post more as we know more!

First trip to Carteret General

Well, it was bound to happen- Grant got a fever yesterday evening. So, Emily and Grant headed to Carteret General after speaking to the doctors in Chapel Hill. They checked his blood levels, kidneys, etc... and gave him some fluids and antibiotics in his port. Long story short, Pa was on his way home from Raleigh meeting his new grandson, and was approaching the vicinity of the hospital as Emily arrived with Grant- so she had a very good Pa to stay for the tests.

About 11:30 pm, fever was gone, Grant was feeling better, levels checked out ok for him to come home...

All is well, seemed a bit scary last night though. We will get more used to it with time.

Keep the prayers coming...