Set Back

Hi Friends,

I thought I should update you on David since so many things are happening.

We talked with David's Oncologist, Dr. Hwang, before Thanksgiving, and it was decided to hold off on chemo for one week since Dr. Hwang was going to be out of town and since David had been battling a cough. So, we are currently scheduled for chemo this coming weekend (first weekend of December).

However, last night, David spiked a high fever around 6pm. We rushed him over to Brenner Children's Hospital ER for all the usual tests that go along with a fever. During the time that we were in the ER, David had a seizure which they are attributing to him spiking such a high fever so fast. Needless to say, Rob and I were scared out of our minds. He has tested positive for the A strain Flu. They are fairly sure that it is the H1N1 variety, but those tests are not back yet.

His fever broke sometime during the night, and hasn't returned up to this point. David and the big kids got their H1N1 vaccines several weeks ago, so there is a good possibility that that could help him to get over this illness faster, but they are taking all precautions just in case. He will be getting Tamaflu for about 5 days. They are going to keep him overnight to see what his fever does tonight....and to make sure they are quickly available in case his fever spikes and prompts another seizure.

We aren't sure what is going to happen with this next round of chemo. It may be pushed back, but we want to see how he does tonight.

We appreciate your prayers, but we won't be able to see any of you until we get home since they aren't allowing visitors into David's room.

We covet your prayers for this bump in the road.

-Kim

So Long

It's been so long since I've been on here. I apologize for not updating more regularly.

David's last round of chemo went pretty well. His tummy was fairly upset for several days afterward - more than normal. This is to be expected, though, and I expect it to be a little worse after the next round too.

This in between time has not been without challenges. David has broken out with some sort of allergic rash. We've been able to disguise benadryl in apple juice to help relieve the itching for him, but it also makes him a little crazy and difficult to handle. It doesn't have the relaxing effect that it has for most people. This is also something that we have to deal with during chemo as he gets benadryl before each dose.

Even though we've avoided all the scary illnesses floating about these days, David has a pretty bad cough right now. It has been keeping him (and therefore Rob and I) awake for several hours each night. It seemed to be improving for a little while, but over the past few days has begun to worsen again, so I am taking him to see his pediatrician today to see if we can help him to be more comfortable when he sleeps. Rob and I are feeling pretty drained from lack of sleep, but it's not too bad. In the grand scheme of things, this round has not been too bad, but we are also looking forward to it being over.

Speaking of over. David's last round of chemo is going to be November 27-28 - the Friday/Saturday after Thanksgiving. This means that he should be feeling good by Christmastime!

I have to say that I am looking forward to this being over, but can't help but feeling a little nervous about whether or not we've kicked this cancer. Usually, I can see that God is in control, but I must admit that there are times that it is hard for me to see.

Sometime soon in the new year, we are going to have to take David back to the occularist for some improvements to his prosthetic. There is a possibility that he may have to have some surgery on his tear ducts to help lubricate his prosthetic, but we aren't at all sure of that yet. We are supposed to be having another exam on his good eye sometime in December as well, but that is not scheduled as yet.

I'll try to do better about updating you all in the next little while. Thanks again for all your prayers and support!

-Kim

Update

After a full week at the hospital, we were able to come home with David. He spent another 5-6 days carrying around an IV pump in a backpack that delivered a constant dose of penecillin. He has been weak, but improving. The first few days after we got home, his little legs were so weak that he was falling a lot and still has some pretty nasty bruises.

He got his tubes out this past Friday. This was a huge blessing since none of us had slept well the whole week in the hospital or the week at home that he had his IV in. The good sleep has been doing wonders for David. He has also been eating very well, and gaining strength just from the nutrition. He is still far from 100%, but the improvement is very encouraging.

My biggest struggle with him at the moment is that he is fighting his naps. I feel that it could help him to improve at a faster rate if he could get a good nap each day, but he just doesn't want to miss out on anything.

I also am still not sleeping well. It's like my body is used to getting up every 2-3 hours and I can't get it to just sleep through. I would appreciate your prayers in this area as I am finding simple daily tasks to be difficult since I'm so tired all the time.

The big kids seem to be dealing with things fairly well. They continue to do well in school and love their little brother a lot. They were very concerned about his stay at the hospital, and are glad that he's home again.

We go back next weekend for more chemo as long as David's counts are good. Both Rob and I are feeling a little nervous about it as 3 of 4 rounds of chemo have come with some scary issues for David. We appreciate your prayers and the care that you all have shown to us!

-Kim

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