One Down and ?????? to go.

Yesterday, I took David for his follow up visit with the Radiation Oncologist. Since our move, each of these trips takes about 4 total hours of driving, so even for the easy visits it is a strain.....I hate driving.

But yesterday was great. We made great time - even got there early. All the nurses and therapists were so happy to see David. They all came in to see him. He was a little overwhelmed in the beginning, but was giving everyone hugs and kisses when we left.

The Rad. Onc. doctor was really pleased with his progress. We don't have to go back to see her again for another year. We will likely have follow up visits with her for many years since some of the potential side effects of radiation tend to show up only after a long time.

Our next big appointment is in a few weeks for the MRI. I am feeling nervous about this one mostly because I know that David is going to have to have an IV placed, and it will be traumatic. But I am taking one day at a time and praying that they will be able to place the IV with extreme speed on that day.

Other things:

Hannah has the opportunity to transfer next year to a school for Gifted Children. The school is just down the street from Baptist Hospital. Rob would be able to drop her off on the way to work, so it would be fairly convenient. There are a lot of variables involved in making the decision, but we have a deadline to apply for her to go there, so we need speedy wisdom. We would appreciate prayer for us as we try to weigh all the variables and make the best decision.

Isaac is continuing to struggle a bit in school. It is not serious at this point, but I am pretty much at a loss as to how to help him. He has huge difficulty in focusing, and thus has not been getting his work at school done on time. Homework time is also quite frustrating - it takes him such a long time that he is beginning to resent it since it cuts into his after school play time so much. I will be having a conference with his teacher sometime soon to get her perspective on things. We would also appreciate your prayers on this issue. Pray that we can figure out what is going on, and that we would be able to come up with some good ways to help Isaac be successful in school.

I'll update again soon!

-Kim

Visits

Friends!

I just wanted to give you all a few updates.

I take David next week for a follow up appointment with the radiation oncology team. I'll probably be taking him by myself since this appointment should just be a bunch of talking and maybe a blood pressure or temp.

The next really big appointment is scheduled for March 5th. This will be David's first official "off therapy" MRI. This means it is the first MRI where all the chemo will be out of his system. It is a big exam for him, so of course Rob and I are anxious about it. MRIs are difficult on everyone. Although they now have a new medicine that doesn't send David into a post-sedation rage, it makes him very very subdued and wobbly for about 24 hours. This means that we have to be diligent to make sure that he doesn't overdo things or fall and get hurt. This coming MRI will be the first one where they will have to put in a peripheral IV since his port is out now. That will be a huge challenge since he is quite a fighter. We appreciate all your prayers on that day. Thankfully, he is scheduled for the first MRI of the day, so he will not have to fast as long.

After his MRI, we will go straight upstairs and see the oncology team. We should be getting a preliminary reading of his MRI during that visit. David will have blood drawn, and we will have a follow up appointment with the Doc.s in charge of his oncology care. It will be a long day, but we are grateful that we can do both appointments in one trip.

Currently, David is doing very well. He has a bit of a cold, but not a terrible one. He's been having some discharge from his eye, but we are sure this is due to his cold (that is a normal side effect of a cold for him). In spite of this, he's been doing well with his prosthetic lately. He still fights putting it in, but is doing well at taking it out on his own, and will even put ointment in on his own at times. We are learning how to prepare his eye before we try to put it in, and we have figured out some things to make it a quicker and less traumatic process. There is still a way to go, but we are encouraged by the progress.

The big kids have spent yesterday and today at home due to the 8+ inches of snow we got over the weekend. Sadly, we aren't prepared for outdoor play, so they haven't spent much time in it. They are both doing very well at school. Isaac is struggling a little bit with his subtraction facts, but he is progressing well with his reading and spelling. Hannah is also struggling a little bit with her subtraction, so we are going to have to start drilling with both of them. They have great teachers, so we feel so blessed.

Rob is still doing well, and I am trucking along. I am really enjoying being able to get out of the house with David a couple times a week to the gym. He really enjoys being able to see people, and gets so excited when we get ready to go somewhere. We are also enjoying the ability to go to church again as a whole family!

Thanks for keeping up with us!

-Kim

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