We are here at the hospital. David is sleeping fairly well right now, and has been mostly sleeping or staring blankly all day long. His fever has continued to fluctuate from about 99 degrees to nearly 103 degrees. He isn't eating or drinking much, so we are thankful that he is getting fluids through the IV.

The nurse came in a few minutes ago to let us know that there was growth found in his blood cultures. This means that he has gotten an infection in his blood. They have been giving him some pretty strong broad spectrum antibiotics since we got here last night, but they are going to have to test the cultures to see if these are the best antibiotics to treat whatever infection that he has. They hope to have some answers about that by tomorrow. Either way, we will be here for at least a week for them to give him antibiotics through his IV.

So, I guess our good news right now is that at least we know, in general, what is making him sick. The bad news is that he is so very very pitiful and his fever is still present. He is hardly talking or playing. He has seemed to enjoy music, so I have been trying to play his favorites on my computer. He spent about 15 minutes tonight trying to sing, but he finally just went off to sleep. He really hasn't eaten anything since Friday morning before we went over for chemo, so he is visibly thinner. He is at least keeping down the few things that he has eaten, so that is good, but there isn't much that makes it into him.

We are at Brenner's Childrens' Hospital which is part of the Wake Forest University Hospital. We are very happy that the docs at Duke allowed us to be treated here instead of going all the way to Durham. This way we are close enough to home that one of us can go to the house to be with the big kids if need be. The staff here has been wonderful, and the room is immeasurably more comfortable than the rooms at Duke, so that is great since we are going to have an extended stay.

Please pray that they are able to figure out which antibiotic to use so that we can get that into him quickly. Pray that the bacteria responds well and that he begins to improve. Pray that the antibiotic works completely so that this doesn't become a regular thing that he has to deal with after chemo. Pray that we are all able to get some good rest.

I'm off to try to get a few hours of sleep.

-Kim

We got back home last night from the hospital. Chemo was pretty uneventful, but David did start to run a low grade fever yesterday around 10am. The fever slowly started to climb until around 2pm when it mysteriously broke. This at least allowed us to be discharged. We were thankful to come home since David (and thus Daddy and Mommy) rests much better at home in our own beds.

Even though the fever was gone, it was still easily apparent that he wasn't feeling his normal self. He was very tired and clingy even when we got home, so after a late night bath, he spent some time in the bed with us while Rob read us a story. He did finally go back into his own crib, but woke up around 4am and spent a little more time in the big bed. I think he knew that he wasn't feeling right, and he was also just a little scared of all the big changes and needed the reassurance that Rob and I weren't going to be leaving him by himself.

This morning, he was ok for some time and he was enjoying playing with his kids. But then again around 9:30/10am, he started to run another low grade fever. He was also throwing up and then extremely sleepy. He is sleeping peacefully right now, and his fever seems to have leveled out at aroun 99.6 degrees. If it increases, we will have to take him back to the hospital and likely they will have to give him some really strong antibiotics to make sure that he's not fighting a bacterial infection.

I'm hoping that he will be able to eat a little when he wakes up. He only ate a few bites of oatmeal this morning. We are also going to have to find something that he can keep down in the fluid department.

I'll keep you all updated on his progress. Thank you again for all your prayers!

-Kim

Friday!

Hi All,

I am very excited about it being Friday. The week has been busy with school, boy scouts, a visit for Isaac to the dentist for a filling.

David is doing very well post-chemo for this round. The biggest issue for him right now is that he is not eating properly. He is also waking up inhumanely early (this morning 4:30am). When he does this, he also wakes up his brother, so we are all suffering from lack of sleep around here. He did go back to sleep, but it is disruptive in the middle of the night.

His new eye is looking quite nice except for the fact that it has spent most of it's time upside down. It is pretty traumatic to him for us to try to take it out and turn it right side up, and then he fights us so hard when we put it back in that it ends up turned around. So, we have left it for the time being. We'll give him a few days of rest before we attempt to flip it right side up again. The process of taking the eye in and out isn't painful, but it causes him a lot of anxiety, so he fights. He will hopefully get used to the process and even be able to help us by doing some of it himself as time goes on.

We go back in on October 2 + 3 for the next round of chemo. They may even try to run the chemo as out patient this time instead of admitting us. We'll see what they decide.

-Kim

Brand New

Hi Everyone,

I'm sorry about not being a good updater lately. I have attempted an update several times in the past few weeks, but the result has been a jumbled mess of words that didn't really stick together coherently, so I decided not to actually post them.

Wow! Life has been busy. David is done with radiation, round 3 of chemo, and.......he has his new eye!!

Radiation was a chore. Driving that distance on a daily basis was very much a drag, but Rob's cousin was sweet enough to accompany David and I several times a week so that Rob could still go and work in the office. It worked out well, and it was as easy an experience as it could possibly have been. We grew to love our nurses and therapists, and I think they all loved David as well. David did develop some bad burns and even a bloody nose from the treatment, but I think that he is mostly over those symptoms now.

David with his sore eye and bloody nose.

We had just a couple of weeks after radiation before his next round of chemo. During that time, Isaac turned 6 years old, and the big kids both started at their new school.

Chemo went very well. Our nurses pushed hard to get us out as early as possible on Labor Day weekend, and David didn't have any reaction to the meds this time. We may not have to admit him overnight to the hospital next time, but we'll see. He is on the upside of his symptoms from that round of chemo as we speak. He will go in on Oct 2 and 3 for the next hit.

David plays "Dr. Hwang"

David enjoys taking our "orders". Here he is wearing his big brothers new bike helmet....I don't think he believes that I want a cheeseburger.

Yesterday, we took David to the ocularist to get his new eye. It was a long day, but a very amazing process. David came home with the first version of a new eye!! We will continue to visit the ocularist for fittings and colorings and so forth, but it is exciting. It is still quite easy to see that his eye is different, but it isn't quite as shocking as a blank eye. It should get more and more lifelike with each fitting. In the picture I will post, he has flipped the prosthetic upside down in his socket, so it isn't straight.

We also have purchased a pair of glasses for David to wear in order to give some protection to his good eye. It is going to be a big challenge to get him to wear them all the time. I am trying to get him used to the idea, but it is looking to be a nice big fight. We would appreciate your prayers for an easy transition to being a glasses wearer.

Dave with his new eye and glasses

I think that is about it in a nutshell. We are all enjoying our new home, and also our new church home which is about 3 minutes from our house. Hannah and Isaac have both made some sweet little friends that live not too far from the house, and that is a wonderful addition to our lives. We appreciate your prayers for our family!!

-Kim

Recovering

Hello!

It seems as though the family is on the mend. We still aren't back to 100% after our stomach bug, but we're closer to well than to sick.

David is doing well, although, he is getting very fatigued. He is starting to have some of the skin irritation around his eye that they had warned us could be a side effect of the radiation, but it's not too bad yet. I think the thing that I have started to notice especially this week is just that he tires out a lot quicker than is normal for him. This is also a normal side effect of the radiation, and I'm sure this has been exasperated by getting sick last week. We're starting the slow process of getting the kids in bed at a "school" hour, so that extra bit of sleep has been helping some. He still is very tired in the morning when I wake him up to go to the hospital, and his naps are long.

We are happy to have the big kids back with us this week. They have had a grand time traveling here and there and spending time with people they love. But, we are glad to have them with us for the remainder of David's treatments.

Well, as of this moment, there are only 10 days of radiation left! We're looking forward to having this in the past, but we are so grateful that it hasn't been as bad as it could have been. We aren't sure when David's next chemo will be scheduled yet, but I'll let you know as soon as I can!

-Kim

Extended

Hi Friends,

I wanted to let you all know what has been going on with us the past few days.

It seems that our family has been attacked by a tempest of the bowels. Over the past week, all 5 of us have had our turn to fight this, and it hit us really hard on Monday. Rob, David, and I were all very very very sick on Monday. After several hours, we were all weak and worn out. Rob's grandparents came to help us out, but Rob's grandmother was just recovering from her own battle with the beast and was still weak. Grandaddy was a super help as he cared for us and then drove us back and forth from the Emergency Room. Both David and I received IV fluids to help us out. They didn't give Rob anything but chipped ice since he was keeping it together while he was there. I think he could have really used something, though, as it is taking him a bit longer to recover.

We spent the whole day yesterday laying around and sleeping. We were on a mostly liquid diet yesterday to try to rehydrate ourselves. Today, I am feeling much better, and David seems to be feeling better. Rob is still pretty worn out.

Because of all the intestinal turmoil, David's doctors have decided to let him have a couple of days rest from radiation. They aren't as worried about the radiation, but they are concerned about the fasting for the anesthesia and also recovering from the anesthesia. We are so glad for this since he is still not back to normal. However, this will mean that we'll have to extend his treatments for 2 days at what we thought was going to be the end of his treatment. But, we are glad they are letting him get strong before they put him through anything more.

I'll keep you up to date on our recovery!

-Kim

Home

Hi Everyone,

We are home after our first full week of radiation. David has done very well this week, but is also extremely tired out.

He started this journey out being very frightened by every task at the radiation clinic, but has ended being pretty whimpery. I feel like this is a huge improvement. The radiation seems to be making him very very tired, and since we have to access his port daily, his poor little self is feeling pretty bruised. His skin is also raw from the bandages and dressings, so we are happy to have 2 days of rest before we have to do it all over again.

We are home for the weekend in Clemmons. David and I spent the week with Rob's parents in Greensboro which was really nice. Rob had some training that we decided it was important for him to be at, so his cousin Christin and his Dad accompanied me to the hospital 3 days this week. David loves them both and was happy to have them with us, and it was really great that I didn't have to be alone. Christin is going to come with me a few days each of the remaining weeks so that Rob won't fall behind at work. She is a delight to have with me, and we are so grateful that she is available!

Well, I have a ton of work to do at the house over the next few days, and I had better get started.

-Kim