Friday, October 26, 2007

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!

Wednesday, October 17, 2007

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.

Sunday, October 7, 2007

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.