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!