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.