Port

Hello, Everyone. I hope you are all settling into 2010 nicely. I know we are.

David has recovered from his last round of chemo quite nicely, and so far, we've not had any bumps in the road to speak of.

We had a lovely Christmas. My parents and grandmother came up for several days. My dad did a whole lot of work for us while he was here. He changed around the laundry room so that it was set up more usefully and added several outlets and a utility sink for me. He and Rob also added a bunch of insulation to places that didn't have any, so I am toasty warm while I do laundry now instead of having to thaw my fingers out afterwards. I am really loving it and am so grateful for both my dad and Rob.

The big kids are continuing to do well in school, and we are working on getting into a daily routine of chores. They have to do chores in order to earn time on the tv or computer. So far (after 3 days) we are doing alright. It is a huge help to me to have them doing their part around the house. They have been very cheerful about it too, so that is a blessing.

David has also presented some challenges. After a few very stressful days of trying to potty train, Rob and I decided that it would probably be wiser to wait to potty train until after he got his port out and had a few weeks to settle into life without the constant presence of doctors. I think it was just too much change all at once, and also, Rob and I were just too worn out to have the kind of patience we needed. So, that is on hold for now.

David's prosthetic is doing better, but still isn't great. It still spends a good deal of time up-side-down, and we still have a lot of trouble with it getting gunk on that has to be cleaned off. But, he has gone several days now without taking it out, and is getting pretty good at taking it out for cleanings when we ask him to. Putting the eye back in is pretty traumatic, but David is doing really well letting us put ointment and oil in to help lubricate the eye. There is progress, but we still have a very long way to go in this area.

Our biggest challenge with David is that he has become pretty violent both in the volume of his voice and the swinging of his fists - mainly at the big kids. He is very very sweet at times, but then has these outbursts. His life has been pretty unstable and out of control, so I'm sure that the "fight" response is pretty close to the surface all the time as he never knows what to expect tomorrow. I have come to realize that he probably views love as a very violent thing. He has heard "I love you" from us many times, but then has been held down for people to stick needles in him or squirt nasty tasting medicines down his throat or put masks over his face. We would appreciate your prayers for wisdom in this area for us as we try to teach him gentleness and kindness.

We will be taking him in on Thursday the 14th to have his port out. Hopefully, then we will be able to lengthen the times between doctors' visits.

Other than that, life is starting to have a nice routine for us, and Rob and I are feeling a little more rested. I'll keep you updated as I can!

-Kim

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