Many Many Things

I have chastised myself for not updating everyone here, but I have to admit that there are times that recounting life's events is difficult - mostly because words are inadequate but also because even recounting joys can be emotionally draining.

But I will try to start from the beginning and get you all to where we are!

David recovered very very quickly from his flu. He did great taking the Tamiflu antiviral medicine....if we mixed it in a spoonful of honey, he would even beg to take it. We were grateful that he didn't fight this since he often fights taking medicine.

We finished his chemo on schedule! Rob and I were complete wrecks the whole time, but David did really well, and there were no major incidents to speak of. They even let us do outpatient chemo this time which was wonderful. We spent Friday night at Rob's grandparent's house in Greensboro, and I think it helped David to be in a familiar place without the many nocturnal interruptions that happen in the hospital. We are all (big kids included) soooooooooo happy to be done with this part of his treatment.

David handled the after effects of the chemo very well. He had a few days where his tummy was just not up to par, and he would ask for a few naps a day, but that was very short lived. His blood counts have since recovered, so we have been able to stop giving him his daily shot of growth hormone!!

Since chemo, David has had an exam with the eye Doc. Good eye is still clear, and the other eye is healed up quite nicely! We don't have to go back for another of these exams until April, and that may be our last exam where David has to have anesthesia.

We have also had him in for an MRI. Thankfully, they have changed some of their procedures in the radiology department and have some newer medications that don't have the same bad side effects. Before, David would wake up in a VERY violent rage after being sedated. He was so hard to handle that Rob and I could hardly keep him from hurting himself. He would also throw up multiple times for several hours afterwards. The new medication made him more sleepy, but he didn't have the rage or the vomiting, so that was nice.

Best news of all is that the MRI was clear!!!! This is a huge step in the right direction. Because of this, we are going to be scheduling a time to take out his port in the near future, and hopefully it will be just periodic monitoring for the next several years.

We are struggling to get David's prosthetic to work well. He has also had another visit to the ocularist since chemo. He refitted David's eye to help make it more comfortable, and we are trying out some different things to lubricate the eye since the radiation David had seems to have damaged his tear production. But so far, it is still a huge fight to keep him from messing with it and pulling it out. We have had several frantic household searches for it since he likes to take it out when no one is watching. And although it is small, it is quite expensive, and we really don't want to lose it.

So, I think that is mostly it. Rob is doing well at work, although he's been very busy. Hannah and Isaac are doing very well at school. I am doing my best to keep some order and routine at the house, but we love our new house and the area that we are in. God has put us in a great place!

For our faithful prayer warriors, here are a few specifics that you can put on your list:

1. That we can get David's eye to stay in comfortably. That he will stop rubbing it and trying to get it out, and that we can come up with a good solution to make it feel comfortable.

2. We are going to start potty training tomorrow.

3. That David will start sleeping through the night again. He's been waking up and trying to come into the bed with us. This started during a rather tumultuous time for David, so we let him do it for awhile, but now we are needing to all get some rest at night.

4. For Hannah and Isaac to continue to do well in school.

5. For Rob to continue to do well at work.

We hope that you all have the Merriest of Christmases! Our family is enjoying a nice "stay-cation" until the new year.....including about 8 inches of snow that we had on Friday (actually I don't like snow in the least, but the kids are sure enjoying it). We appreciate the support that you all have been to us. I'm not sending Christmas cards out this year, but know that you are all appreciated more than you will ever know.

With immeasurable love and thanks,

Kim

Jiggety Jog

We are home from the hospital!

David did NOT have the H1N1 strain of the flu. The oncologist told us this morning that he is the first case of the seasonal flu that they have seen this season.

After the first traumatic night, David's fever never came back. They kept us overnight last night to make sure that he didn't spike another fever and thus have another seizure. He slept as peacefully as the lady that takes vital signs would let him :-).

So...we are home. Chemo is still on schedule for Friday, but the oncology team will check him over really well first. He will be done with his prescription for Tamaflu by then, so hopefully we will be out of the woods as far as this is concerned. Just pray that neither Rob or I will come down with the illness.

We also have an MRI scheduled for December 15. This is partly routine, but they also want to check to make sure that there are no other reasons that he would have had a seizure. They are fairly certain that his seizure was brought on by his high temp, but they want to be absolutely certain of it.

We appreciate your prayers for continued healing for David, a hand of protection over the health of the rest of the family, that this round of chemo will be without further complications, and that the MRI will come back clear.

I am also supposed to be scheduling David's next exam under anesthesia with the eye doctor soon. I'll try to keep you posted on when that will be.

-Kim

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

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

3 Days Down

Hi Everyone,

We are done with our first 3 days of radiation. It hasn't been without a hitch, but I suppose it could have been worse.

David is starting to show extreme anxiety whenever we take him to the hospital, and that is only multiplied when we have to take him on a daily basis. So, this makes each visit emotionally difficult for Rob and I since we have to force him to do things and have things done to him that make him petrified. We are talking with the doctors, nurses, and social workers to find out some ways that we can make the whole process a little easier for him to handle.

We have also had some difficulty figuring out the best way to access David's port each day at the same time that we are trying to find out ways to make things less traumatic. It is a challenge, and I must say that I am feeling the emotional effects of this quite a bit. The newest plan is that we will just have to access his port each day and hope that we can help him to handle it.

They also told us today that we are scheduled for 23 total days of radiation. We were under the impression that we would have 15 days total. So it means the road is a little longer than we expected at first, and that realization always messes with your mental toughness. It will also mean that there will be no time between the end of David's radiation and the start of school for the big kids. So, we are digesting that news and trying to make plans accordingly.

Rob's work is being great about letting him go with me to each of these appointments if he wants, and we are so grateful for that. But, this means that he will also be working late into the night each night and sometimes on the weekends. We will probably try to work out a few times that someone else can come with me to David's treatments so that Rob can get a good day of work in, but we are so thankful that he's been given the freedom at work to do what we feel is best for David.

The big kids are having fun traveling around visiting grandparents. They are with my dad and mom this week. They will be going to the beach with Rob's grandparents next week, at my parents' again the week following, and then I'm going to keep them home with me for the last week of David's treatments. It may mean that they have to come with me to the hospital a few times, but it might be good for them to see what David is going through on a small scale. It might help them have a better grasp of what is going on when Daddy and Mommy take David to the doctor.

So...I don't know how often I will get to update you all over the next few weeks. We are doing a ton of traveling back and forth and then I am brain-dead the rest of the day. But, we covet your prayers for us during this time.

Thanks so much!
-Kim

Radiant

David has been doing very well. He had a rough several days right after we got home from chemo, but not too bad all told. He is doing much better. His appetite has been steadily improving, his naps are returning to normal, and his general fussiness is subsiding. I think we are nearly out of the woods for this round of chemo!

That being said, I am taking him to Duke tomorrow (Tues) for a preop appointment. Then on Wednesday, we are taking him over for his mapping session at radiology. During this appointment, they will be making him a radiation mask (something that will keep his head still while the radiation is running), and they will be doing many scans of his head to make sure that they calibrate the machines correctly and get the radiation where they want it to go. He will be asleep for all of this, thankfully.

We begin his radiation treatments on July 22. He will get daily treatments Monday - Friday, and we will get the weekends to catch our breath. I was surprised that they were going to start these treatments so soon, but I am thankful since we should be done with radiation in time for the big kids to start school. I don't know when his next chemo appointment will be, but I have a feeling that it won't be long after the radiation ends.

We are all enjoying our new house. It is great for the kids to get used to our new place before school starts. The neighborhood is extraordinarily friendly! The kids love the yard and the amount of space that we have inside. We are all loving that Rob is only about 15 minutes from work. There has been a doe and her twin babies staying our back yard. The kids love to see that. We also have several chipmunks and a red-headed woodpecker and his mate who have a nest in one of the closer trees to the house! The kids are loving the wildlife. They get super excited each time they get to watch a robin pull up a worm or when the squirrels sit on the little fence to eat their hickory nuts. It is a great place for us!

-Kim

Two

Happy Independence Day! I hope you all had a wonderful day today wherever you may be in the world.

We are home from David's second round of chemo. Things didn't go as smoothly as planned, but we made it through and can cross this one off the list.

We arrived at the hospital on Thursday around noon, but didn't get to our hospital room until nearly 5pm. That seems to be the magical time for us. Even though our chemo meds were ready when we got there, we were not able to start. The doctors wanted some emergency medications to be in hand since David had such a scary reaction last time, and it took several more hours for those medications to arrive from the pharmacy. Then...the nurses were changing shifts, so we had to wait awhile longer. It was about 9:30pm when we were finally able to start.

David was about 40 minutes into his second medication when he began to have another reaction. It was similar to the reaction that he'd had last time, but milder and much slower progressing. They again stopped his chemo with about 7 minutes remaining in his infusion, gave him benadryl, and we waited. Rob talked to several of the higher up docs on the phone and it was decided to continue with the next medication. The meds are really designed to work in conjunction with each other, so it was important for him to get the next medication if at all possible. Needless to say, we were all very nervous and shaky. We started the third medicine around 12:30am and finished around 1:30am with no problems. David slept peacefully during the night, but Rob and I slept very fitfully.

Then next morning, we talked at length with two of the head docs, and we couldn't determine why David had this second reaction. It was to a different medication than last time, and it was very strange in timing. So, they recommended that we go ahead and run the chemo as prescribed for that day, but give David benadryl before anything started. We weren't able to start chemo until around 4pm, so the rest of the day was very nerve wracking for Rob and I. Our favorite nurse was there yesterday and she ran his chemo and just stayed in the room with us for the whole 2 hours with emergency medication on hand. It was uneventful, and for that we praise God. We were able to leave around 7:30pm, and made it as far as Rob's grandparent's house in Greensboro where we just crashed for the night. Rob, David, and I slept until after 10am this morning. I haven't done that in years, but it was a nice rest.

David has been happy and normal today. He is paler than his normal self, but that is to be expected. What is left of his hair is falling out in gobs right now, and I feel like he'll be 100% bald before we go back for another treatment.

After David's counts recover, we'll be headed over to radiology for a mapping session. Then we will start 3-4 weeks of radiation treatments. The treatments will be daily treatments Monday through Friday each week. This is the part that I am most nervous about since the side effects are quite scary. I am praying that God will calm us and keep David still during treatments so that the radiation will only hit where it's supposed to. I'll let you all know when that is about to begin.

Thanks again for all your prayers. We feel the need for them more and more each time we go.

-Kim

New Picture

Hi all,

I was reminded yesterday by one of Rob's co-workers that I hadn't put up a current picture of David since his eye has been removed - besides the one taken the day after his surgery. So, I thought I would put up one of him from his birthday celebration at the end of May.

We still aren't sure when he will be getting his prosthetic, but I am thinking we will wait until after he is done with radiation before we attempt that.

I'll let you know how things go at the hospital.

-Kim

Round 2

Hi Everyone,

I feel bad that I haven't updated you all for such a long time, but things have been very very busy.

First, the kids finished up the school year with flying colors. They both had a great year, and we are so pleased about all they have learned. So, now I have a First grader and a Second grader.

Secondly, we closed on our new house!! We are super excited to be in a new place that is merely 15 minutes from Rob's work. It is amazing how much stress this has relieved from our lives. The house is in a great neighborhood, and has plenty of space for all of us.

Last, I was without internet for a couple of weeks while we were moving and unpacking and so forth. I am still only a fraction of the way through, but it is nice to be able to have all our stuff in one place again. I am finding that there are many things that I don't need anymore that will give me the chance to have a nice big yard sale :-).

We will be taking David back to Duke on Thursday and Friday of this week for his second round of chemo. Once his counts recover from that, we will be starting his radiation treatments. We have found out that they will be daily treatments - five days a week. We get the weekends off. This will last for 3-4 weeks. This is the part that I am the most nervous about. Even though they have improved the techniques of radiation a lot, they will be radiating his eye socket. There is the chance for him to have some facial deformity and possible brain damage. We will covet your prayers especially during that time that the radiation will kill whatever cancer might be there with no physical, mental, or other side effect at all. We are grateful that Rob will be able to be at each of these treatments. It may mean that he will have to work some later hours or possibly weekend hours, but we are just thankful that he has a job that is being so flexible with all of this.

Oh, our new mailing address is 101 Roquemore Road, Clemmons, NC 27012.

I'll try to update you again soon.

-Kim

Scare

I know it's late, but I am still a little wired from our day, so I thought I would update everyone.

I am sitting here in the hospital between my two sleeping guys. David is peaceful right now, and Rob is zonked (and it is well deserved).

We started David's chemo yesterday - as planned. It went pretty well, although we didn't get to our hospital room until nearly 5pm, and they started his 4 hours of chemo after that. He did have a couple of episodes of vomiting, but we are pretty sure that was caused by the nasty tasting medicine that they gave him by mouth. He had a peaceful night, but woke up very early this morning. Rob and I spent a short and restless night on a tiny little pull out cot (not even as wide as a twin bed). We rested as well as can be expected, though, so we were grateful for that.

David's second round of chemo was not able to start until about 1pm today. He took his first chemo med. very well. However, about 15 minutes after they started his second med, he sat up in the bed choking and sputtering and crying. He turned bright red all over and then started to turn blue around the mouth. Our nurse - Marian - was especially quick in thinking and pumped him full of Benedryl. They gave him oxygen and did several other things, and he recovered fairly quickly, but it was a huge scare to all of us. The docs said that he was having an allergic reaction to the carrier agent in his chemo. They gave him some steroids and some other stuff to make sure that there was not a secondary flair up. Then his oncology team decided to give him the same chemo drug mixed with a different carrier agent. He just finished this infusion about 30mins ago, and he seemed to tolerate it very well. He was able to be un-hooked from the iv for the night, although his port is still accessed just in case. We should be able to go home in the morning.

Needless to say, we had a scare, but are so grateful for the quickness of the doctors and nurses. We had about 20 people in the room in the matter of a few seconds. David seems to be handling things well for now, and doesn't seem to be too nauseated for the moment - other than when he had that nasty medicine. We will all be glad to get home and have a good night of sleep in more comfortable beds, but it is great that they are letting both Rob and I stay with David while he is going through all these treatments.

Thanks for all your prayers

-Kim

Starting

Hi Friends,

As I type, I am sitting in the hospital bed that David has been assigned to for his first round of chemo. He is about half of the way through his first day of chemo.

Our oncologist has been working hard on getting the right chemo regimen for David. He has been talking to doctors around the world and together with them, we have started a new chemo regimen. David will be on 3 chemo drugs, and will have chemo for two days every 4 weeks. We will be spending the night in the hospital overnight each time he has chemo so that David can get continuous IV fluids. This is to help protect his kidneys. They also have to monitor his blood pressure regularly. The fun part is that our nurse tonight is someone that knows my cousins very well, so it feels like we are with family. They are also allowing both Rob and I to stay with him all night.

Here his is in all his glory...



Thanks for all your prayers!
-Kim

Begin Again

David has endured a week and a half of testing. Now we are ready to start his treatments.

The good news is that there is no sign of the cancer spreading outside of the eye cavity. There may be indicators that there is some cancer still in the orbit, but we are going to be discussing the MRI results with the doctor tomorrow.


Our plan right now - as far as we know - is to take David to the hospital tomorrow. We will sit down with his oncologists and talk about all the tests, chemo regimen, hospital stays, etc., etc., etc. Once we understand what the oncologist is recommending, we will go right over to the day hospital and start David's treatments. As we understand at this point, David will have chemo for 2 days, but will not have to be hospitalized overnight. We are going to try to avoid the cost and headache of a hospital stay. If we see that David is not tolerating the treatments, we may have to rethink things and schedule the treatments to be in-hospital treatments, but we are hoping that we won't have to do that.

And so the fun begins.

On a different note, we have had our appraisals and inspections on our new house, and everything seems to be a go! We are super excited about moving into a house with more space, but we have appreciated Rob's grandparents' generosity letting us stay here. If you click on David's picture, you should be redirected to our picture site to see pictures of the new house. We feel really blessed to get this house in a great neighborhood and for a really great price!

I'll update you later, but right now, I need to go and finish packing for a whole day at the hospital.

-Kim

Today

This has been a very busy week. David has had a plethora of tests and exams. He's been poked and prodded and weighed and measured. He's had his new port put in, and today we get a rest. We go again tomorrow, but the break is very very welcome. It gives me a chance to do some laundry and clean up the house a little. David has been a champ. He's taken everything in stride and still has a big smile for his kids at the end of the day.

We still have an MRI and kidney study to complete before all the initial tests are taken care of. Then we will likely have a sit down with the oncologist to discuss the near future. We still don't know the chemo regimen or when we will be starting.

Earlier in the week, we put an offer on a house and our offer was accepted. It is in the same area as the last house, but in a bigger neighborhood where we already know some people! We still have to do the appraisal and inspection process, but we are hoping that things will work out.

I'll update again soon.

-Kim

This Week

Hi Friends. We are just beginning to get a glimpse of our schedule this week.

Tomorrow - David has an appointment with the eye Doctor to check up on his healing progress from the enucleation. He will then have a sedated EKG followed by an audiogram.

Wednesday - He will have a lumbar puncture, bone marrow study, and they will insert his port-a-cath

Thursday - David will see a Speech and Language Pathologist - I'm not really sure what this is for, but I am trying to find out.

Friday - Will likely be a kidney study (not sure what this entails), and possibly an MRI or CT scan.

So....it will be a busy week. David's oncologist is still meeting and conversing with doctors all over the country, and his pathology slides are being sent for a second opinion as well. I will try to keep you updated as well as I can.

Thanks for caring.

-Kim

Ten Steps Back

So, we had less than 24 hours to revel in our good news.

At about 6pm last night, David's oncologist called to let us know that he needed to see us today to go over some things that were found in a separate pathology report than we had been notified about.

Apparently, our pathologist had recently been at a conference where testing for retinoblastoma had been a topic of interest. It was becoming more and more frequent that children who had been given the "all clear" signal were redeveloping the disease. So, there is a new test that has been shown to point to a new pattern of spread. Our pathologist came back from the conference and retested David's eye for this particular pattern of spread and the test was positive. Now, this does not mean absolutely that David's cancer has spread outside the eye, but it shows high probability. There was no sign of spread down the optic nerve which is very good.

So, it is the consensus of David's team of Doctors that David undergo another round of treatment which will include chemotherapy and possibly radiation and/or surgery. The chemo treatments will include several different drugs than last time, and they will be much more intense, much more frequent, and will last much longer. We don't know the absolute specifics yet, but each heavy treatment will likely involve 2-4 days in the hospital.

Next week will be a slew of tests and prep work, and then the week after that we are hoping to start the chemo.

I can't actually tell you all how we are doing with this news, because I don't really know. I think my brain has mostly shut down. We are coming to learn that medicine is just a series of good guesses, so our best guess at this point is to continue down this road and pray that God's grace has paved the way (which we know it has!). I was hoping to have a big celebration for David's birthday and good report, but I am going to have to rethink things now. Such is life.

We appreciate your continued prayer for our family as we try to make the best possible decisions about David's care and also in finding a home.

David - as always - is just happy and bouncy and has no idea what is coming, but it certainly is fun to see him enjoy life.

I will update with more news later....when I know more news to give

-Kim

Free at Last.....

.... Thank God Almighty!!

Davids pathology reports came back clear. We were just informed, and I wanted to rush to share the good news with you all!

We have been so grateful for all of your prayer and support. Thank you a thousand times over.

This doesn't mean that we are completely out of the woods, but this is the best news possible at this point in time. We will still have to continue to monitor his "good" eye and do MRIs to make sure that there isn't anything developing out of eye-sight.

David has fully recovered from the surgery. He was really recovered the day after :-). We take him back on Tuesday for a check-up and to get a feeling for when he will be able to be fitted for a new eye!

Normal?

Hi Friends,

I wanted to update you on David's progress to date.

He is acting like nothing ever happened! He eats and plays like he always has. He has seen himself in the mirror a few times, and he stares at the eye like he knows something is different, but he really hasn't messed with the eye at all. Over the course of the day yesterday, the swelling in the eye went down dramatically. This morning, the signs of bruising on the eyelid and around the eye look drastically diminished as well. I am really surprised and so pleased at his progress. I have to keep the matter from accumulating and matting his eyelashes together. That is not the most pleasant part of the day, but he seems to tolerate it at a lower volume that I anticipated. I also have to make sure to get ointment into the eye 4 times each day. This task has also been much easier than anticipated - which is great because it would cause a lot more trauma to the eye if I had to fight with him to get the ointment in. Here is what he looked like the day after surgery.



The big kids have taken all these changes in stride. Isaac especially has been very open to ask tons of questions about it, but has seemed satisfied with the answers that we've given him. I think that since David doesn't seem to be in much pain, that helps them both to move on to the next step.

Rob was able to go on his work trip. This is a real blessing to him as this is a busy time of year for him at work, and postponing this trip could have caused a real headache for him. He was willing to postpone the trip, but it is a blessing that he didn't have to do that!

In other news, the deal we made to purchase a house in Clemmons, NC has fallen through. There were some issues with the appraisal and the inspection that have made us feel the need to move on and look for something somewhere else. I was a little disappointed at first, but at the moment, I am feeling some excitement about what is out there for our family! We have felt God's hand leading and protecting so often in the recent years that we are confident that He will lead us to just the right place.

We feel so much gratitude for the gracious care given to us by all of you. We covet your prayers and your notes of courage, comfort, and support. It has been such a boost to us. Thank you all so much!!

-Kim

It's Done!

Hi Dear Ones,

We just got back from the hospital about 45 minutes ago. David's surgery went really well. The surgeon seemed to be pleased that everything went smoothly.

David has one whole side of his face bandaged up, but he seems to be doing really well for now. He has mostly been sleeping since the surgery with just a few mild whiny interludes. Overall, it has been much better than I thought. They gave him some nice strong pain meds to get him through the rest of the day, so that might be what is making it so easy right now, but I won't complain :-).

We will take him back to see the Doc. in the office in the morning. We will be getting a tutorial of how to care for the eye while it heals, and that is when we will have a much more relaxed chance to ask all the questions that we have. We're hoping that he will be able to give us a time frame on when the test results on the surrounding tissues should be back.

I will update you again soon. My brain is a little boggy right now, so I don't want to write to much until I am sure that it will make sense. Thank you all for all your prayer! We felt exceptionally peaceful today.

-Kim

Busy Week

David's surgery is now a sure thing. It will be happening on Monday, May 4. I am very glad that this is coming quickly since David's eye is visibly deteriorating on a daily basis. I will be glad to get the cancer out, and am actually feeling a bit nervous about them finding things in the surrounding tissue. It is so hard to keep your mind from going places and running through scenarios. Rob will also be going out of town next Wednesday for work, so that will be a challenge on both of us. It will be hard for him to be away, and it will be hard for me to have him away, but thankfully it is just a short trip. Please pray for the tests on those tissues to come back negative for cancer, and also pray for peace of mind and spirit for our whole family over the next few weeks. Our small group at our church has been a wonderful support to us, and they will be providing us with meals that week which will be such a blessing!

We won't know what time the surgery is scheduled for until Friday afternoon, but I will try to post it here for you all so that you can be praying while David is in surgery.

On a lighter note, we are under contract to buy a house in Clemmons, NC. This is only about 10-15 minutes away from Rob's office. It is a lovely house with a big yard for the kids to play in. It has wonderful mature trees - something that we didn't have at our old house making it hard for the kids to enjoy playing outside on hot days. It even has a tiny little creek running through the property! We have our inspections on it today. Pray for wisdom on our parts as we go through this whole process. There are still a lot of things that could make this deal fall through, so this isn't a sure thing yet. We are hopeful, but we are looking mainly for God's will in this situation.

The big kids seem to be dealing well with David's situation for the moment. I know that reality will come crashing in when David comes home on Monday evening with a swollen patched up eye. We will need a lot of wisdom and patience at that time.

Thanks again for all your love, support, and mainly prayer!

-Kim

Surgery

We have tentatively scheduled David's surgery for May 4. I say this is tentative, because Rob had an out-of-town work trip planned for that week, so he is trying to make all the calendar things work out. I'm glad that this will be soon and then over and we will be able to learn our new life with David's new and cancer free eye!

Also, we have found a nice little house that we are in the process of making an offer on. It is in Clemmons, NC just to the South-West of Winston-Salem. It is a great house with a lot more space than our old house, a huge yard, and best of all, just 15 minutes from Rob's work!! It is also in one of the better school districts, so that is huge!! We are really excited about putting in our offer and seeing what is going to happen.

Thanks again for being interested in us!! We love you all.

-Kim

Newest News

Hi everyone!

We are back from our most recent visit to the eye doctor with David. Unfortunately, the hemorrhaging in his eye has gotten much worse. This wasn't a surprise to us since that eye is visibly a different icky yellow color now instead of pretty white. It has even changed the color of the iris to a funky yellow/blue. So, we weren't shocked that conditions were worsening.

So....we have decided to remove the eye. We are doing relatively well with this emotionally. I think we felt that this would happen eventually, so we have had some time to deal. There is still grief over the whole thing, but also a strong sense of peace and calm. Life rarely lets you feel just one emotion at a time :-).

We have found out that the surgery will be out patient surgery, and it should happen in the next few weeks. There will be several weeks for the orbit to heal, but we have found out that David will most likely be fitted with a movable prosthetic!

Our biggest concern at this point is....once they have removed the eye, they will be checking surrounding tissues to make absolutely sure that the cancer has stayed contained in the eyeball. So, you can all pray that they will not find anything when they run their tests.

Also, Isaac and Hannah will have to deal with this news about their beloved baby brother. I know that it will be hard for them to deal with the news, but it will be even harder for them to deal with the ugly eye that David will have for several months while the orbit heals and before they fit him for the prosthetic. They will have strong emotions that we need to have wisdom to help them work through.

Even though we are hoping that the cancer will be gone when the eye is removed, we will still have to go through several years of continued exams, MRIs, blood work, and etc. So...it will only be the next step in this journey.

We are so grateful for your prayers and support. We love you all!

-Kim

Back to the Living

Hi Friends. I know it has been a little time since I have updated you all.

First, David has his next exam on April 10 - the Friday before Easter. I have a feeling that this exam will tell us a whole lot, so it will be an important one. I also have to say that I am not anxious about it at all. God has brought me extreme peace about which ever way this exam goes. I just hate that the little guy has to go through it all.

Secondly, we got a nice offer on our house. We moved out this weekend into the basement apartment of Rob's Grandparents' house. It is a small space, but very lovely. We are going to stay here at least until the kids finish school. This allows them to continue to go to the same school that they started the year at. Our closing on the house is scheduled to take place on Tuesday March 31. It would be great if it could happen on this day as planned. If we close on April 1 or any day after that, we will have to pay at least the interest on our loan or more....so we would love to close in March and save that money. We would love your prayers for this to happen! We have been very busy moving everything and putting things into storage and so forth. We are tired, but we are happy that everything is moved and we can get back into some sort of a routine again until the end of school.

Thirdly, we are in the search for a house in the Winston-Salem area. We are trying to find a place with a little more space than our previous house (our old place was 1289 sq ft.). We are also trying to stay within the budget that we have set for ourselves. There are some very promising places, but the process can be confusing. We would also love your prayers for God to lead in the search and that all the details would flow smoothly. We will be looking at a place this afternoon that seems to have some potential, so that will be exciting!!

Our lovely Hannah had a birthday last week! She is now a very tall 7 year old! I am hoping to have a little party for her with some of her friends from school in the near future. The interesting thing is...we were living in this same apartment when Hannah was born, and now, 7 years later....we're back!! She is such a sweet girl, and we are so thankful that God gave her to us. She is doing very well in school, and is a great help to me with David. She can do a lot to take care of him which makes me much more sane.

I think that is all for now. I'll let you know how the exam goes in a few weeks.

-Kim

Good News

Hi there everyone! I just wanted to share with you that we got an offer on our house on Sunday. We signed the paperwork to get the ball rolling yesterday. There are still things that could make the deal fall through, but it was a very good offer - so we are hopeful.

If the deal goes through, we will be closing either March 31, or April 1. We are hoping for March because it would save us quite a bit of money. Please pray that the buyer will be open to this idea.

We are planning on staying here in Greensboro until the end of the school year. We want to let the kids finish their school year here at their school, and then move. This would also help us to save up a little more money for a downpayment on a house in Winston-Salem.

So, just wanted to share that with you. We still don't know when Davids' next exam will be. I'll let you know when I find out.

-Kim

The Line in the Sand

Hi Everyone,
Hope you're having a good day.
We got fairly good news today. The doctor didn't see any new growths for the second time in a row. However, there was a lot of hemorrhaging around the area that has received so many cryotherapy treatments for the last year. If this clears up, we will be in pretty good shape as long as no new growths occur (which, of course, is not a guarantee, as we have learned over the past year after David finished his chemo and growths have occurred off and on). If the hemorrhaging doesn't clear by our next appointment (in 6 wks) we will have to take the eye. The doctor does not want to risk missing tumor growth because it is being clouded by the blood where he can't see it. If we come back in 6 wks and the hemorrhaging is gone, but new growth has occurred, the eye has to come out. He said that it has taken about all the cryotherapy it can take and the bottom line is that there is still a malignant tumor in his eye that we can't mess around with.
Maybe this doesn't sound so positive as you read it…It really is for us, though. Kim and I are both at the point that we are ready to get it over with and remove the risk altogether. Of course, if things stay clear, that will be good too, but we'll have to monitor very closely, which has been fairly nerve-wracking.
David did well as always. Since there was no cryotherapy, the exam was quick and he woke up happy. He's asleep in his crib now, peaceful with a full tummy.
Thanks for all of your support during this!
Rob

Friday The 13th

That is the day of David's next exam - as long as he is well enough. He has been fighting a cough and runny nose since Christmas, so we are praying hard that he will be well enough. It isn't helping that the weather seems so moody. One day cold as ice, next day warm enough that my crocuses are blooming.

Other than the runny nose and cough, David is very happy. He spends most of the day trying to mimic my words. He's really picking up a lot! We are all doing fine. The big kids just brought home fabulous report cards yesterday! I am so proud of their hard work at school!!

I hope all of you are staying warm,

-Kim

Still Waiting

David had another exam this past Monday. The doctor didn't see anything, but there hadn't been too much time between this exam and the last one, so he may not have been able to see it yet.

We were grateful for this news. We were also grateful that David didn't have to have any cryotherapy.

We go back in one month to look again.

-Kim