No Mask!

Today, we had David's first in office eye exam. He did great, and the results were also great - no visible tumors!! This is a big step for David as before these exams had to be done under anesthesia. The doctor was very impressed with how cooperative he was, so no more exams under anesthesia for us!

Now, that being said, it doesn't mean that David won't have to have more anesthesia for other things. The doctor is not really satisfied with how David's eye looks, and neither we nor the ocularist are satisfied either. We will go sometime before Christmas to have a new eye made, and if we can't get things to look better, then we may have to have some eyelid surgery to help the prosthetic to sit better in the socket. We would appreciate your prayers that the occularist can fix most of this problem just with a new casting of the eye and some adjustments from that standpoint.

The doctor also gave us some new eye drops to try when David's eye gets really really gunky. Hopefully these will help him to be able to keep his prosthetic in more - which is good for the development of his facial bones.

Tomorrow, David and I are off to get a new pair of glasses. This will be the next big step for us - getting David to wear his glasses all the time. Because the lenses are not corrective (only protective), this could be a bit of a struggle. We had been doing very well getting him to wear them, but his old (expensive but comfortable) glasses broke. I got him an new cheap pair, but they are very uncomfortable for him. So, we have decided that we will just have to go and get a new pair of the comfortable ones and try to be diligent in guarding them from the destructive habits of a very active 4 year old boy.

David's next MRI will be September 23 at 8am. We will follow this with a visit to the oncologist on the same day. We appreciate your prayers for both of these visits.

God bless you all!

-Kim

Flying

Time has flown by since I posted last. I thought the school year was busy, but the summer has put it to it's sorry shame. I admit that I am looking forward to school starting again just so things will calm down a bit.

We have had a wonderful and busy summer, but it's been great having the kids home all day. In just a few weeks, I will be by myself all morning long as Hannah and Isaac will be in school, and David will be in preschool. I don't know what I will do with myself!

All children are continuing to imitate weeds and grow themselves out of every article of clothing in their closets and drawers. Hannah is nearly taller than me (not that this is a difficult feat, but impressive non-the-less). Her hands are already bigger than mine, and I bet that before another year passes, she will indeed be taller than me. Isaac has enjoyed having his friends at home this summer and is putting on a brave face at the prospect of going back into public school this year. I know that he will do great, he's such a happy and friendly guy. David is a bundle of energy. He's so excited about going to preschool, and will be stylin' with all his John Deere gear (backpack, tshirt, and hat). I think it will be great for him to be around some kids his age, and I know that he will learn so much.

I am enjoying my job at the church! Our youth are such amazing people, and my boss is also a great guy. It's a great outlet for me, and I love knowing that I am doing something long lasting and meaningful.

Rob continues to do well at work, and we have enjoyed this period of relative stability in our lives.

Events that are coming up:
1. David goes in for his first in office visit with the eye doctor on August 25. We would appreciate your prayers that this would be a smooth visit and that David will be docile and cooperative with the doctor so that our days of exams under anesthesia can be over. This day also happens to be the first day of school for the big kids, and also Isaac's birthday.
2. David's next MRI will be sometime in September. I am not sure of the date yet, but will let you all know asap. As always, prayers for a smooth sedation for David and great results are coveted for these.

Thanks for your prayers and caring!

-Kim

4 Years

Last Monday, May 30, we celebrated David's 4 years on this earth! We find it hard to believe all those 4 years have held for us, but we are so grateful that God has allowed us to have our little guy for that long!

As of right now, things are going very well. One of our biggest challenges right now is getting David's eye to stay in and stay comfortable. He is taking it out about every 36 hours or so, and no matter how much lubricant I put on it, it seems to be uncomfortable. This is pretty frustrating to me, but I am trying to keep things in perspective. We will hopefully have an appointment with the eye doctor in the next month or so, and we are hoping that he can give us a little help on this issue. Other than that, though we may just have to bide our time until we can get a new eye made (we have to wait a few more months in order for insurance to pay).

Our second big challenge is that David is wetting the bed most nights. I know that a lot of this is because he plays so hard in the heat and he sleeps so hard once he gets into bed that he just doesn't wake up.

We would appreciate your prayers for both of these issues to be resolved in the near future.

Hannah and Isaac are both doing well. Isaac did very well on his homeschool testing, and will be returning to public school next year. Hannah is about to finish up school, and she just performed in her first piano recital! She did such a great job!

Rob and I are just enjoying this period of relative normalcy!

Thanks for your prayers and partnership,

-Kim

Polished

Tomorrow, I take David to the ocularist to get his eye all polished up. I think he will probably do a little fitting as well. Hopefully this will help David to be more comfortable with the eye. It is really bothering him lately, and spends more time out than in. I have a feeling this has a lot to do with the amount of pollen in the air and the fact that his eye doesn't make tears, but who knows.

Other than that, we are doing well, and are only one month away from celebrating his 4 years on the earth!

Hope all of you are safe today and that none of you were affected by the storms of yesterday and last night.

-Kim

Aaaaah!

I can't believe I didn't update you all on David's last MRI.

It was CLEAR!!

The whole process this time was much smoother. David took the "Happy Medicine" before they tried to put in an IV, and although he still cried, he was much less worked up when they started to run the sedation. This meant that they didn't have to use as much of the medicine this time as they usually do, and he woke up much easier. All of his bloodwork was fine too.

We know that people were praying for us that day as there is no other explanation for why things went as smoothly as they did. David is growing like a weed, and will turn 4 years old next month!

As to other prayer requests, I had some dental work done and was on an antibiotic for my swollen glands. So far, this seems to have cleared everything up! I am very thankful since I was beginning to be in a good deal of pain.

Hannah and Isaac are doing really well. Hannah is in her last quarter at school, and she is doing amazing! Isaac is also about to finish up his year of homeschool, and he is doing so well. I really feel like he is going to move on to next year with a great foundation in the basics. As of now, he will continue to homeschool for one more year, and then we will re-evaluate.

Things continue to be busy, but good. We appreciate your prayers so much!

-Kim

March 1

Hi everyone,

I wanted to give you all an update on how things are going.

David is doing really well. He is growing and learning so much. He had a very short bout with the flu in January, but he seems to have recovered quite well. He goes in for his next MRI and oncology follow up March 11, so we would appreciate your prayers about that. Right now, he is enrolled to go to preschool next year at our church! He is very very excited.

Hannah is enjoying school and doing very well. She made friends quickly and is learning so much. We are really proud of her. She is also going to have a speaking part in her grade's play on March 15, and she is having a piece of artwork sent to an art contest!

Isaac is really working hard in homeschool and doing very well. I am pleased with the progress he's made this year, and we are planning on homeschooling him again next year. He is doing well in Cub Scouts, and is very helpful to me around the house and with David during the day. He loves to read and study history!

Rob and I are doing well. I have been having some trouble with some swollen glands. After having them checked out, it seems that I keep fighting off infections one after the other. I would appreciate your prayers for these to subside since they do cause me some discomfort. Rob's job is still great!

I'll try to update again as soon as we get the results from the MRI!

-Kim

Begin

"He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God."
Psalm 40:2-3a

Tomorrow we will have completed the first full week of a new year. It's hard for me to believe that even this first small piece has gone by so quickly.

David did not end up having an MRI in December. After the change in oncologists, we got onto a wrong MRI schedule. His last one was done 3 months early, and instead of making him go through all that again, we are just going to keep him on a wonky schedule. I am glad. MRIs are no fun for anyone. David is becoming quite anxious before his doctor's visits too, so it's nice to have one where the worst thing that happens is a finger stick for bloodwork.

As we go into this new year, I feel like I am starting to emerge from a cloud. There is still a little haze, but I am starting to see things with a little more clarity again. I guess for the past 3 years I was just trying to make it through, but I didn't even really know what that meant. Everything was starting to shut down: my brain, my body, even my soul. It was a very dark time for me in every way. My prayer every day was, "Just let me make it to bed tonight." I couldn't finish my thoughts, my sentences; in many ways, I couldn't even pray. Not because I didn't want to, just because that fog so inhabited my brain that I simply couldn't complete those tasks.

I am feeling a bit better now.

I know that this isn't over. We still will have the same stress and anxiety each time we take David in for an exam. And we don't know what the future holds. I do know that this will not be the last valley we pass through in our lives.

I am thankful for those of you who have prayed and continue to pray in our stead. I am thankful for the love and support you all gave to us. I am thankful for people I don't even know who have lifted my gaze out of the valley through deed, word, song. I don't know how people can live without the Body of Christ around them.

Rob and I have been running together for the past 6 months or so. This is nothing new to him since he ran in both high school and college. It is a new experience for me, however. One of the things I notice is: it doesn't take much time or work to run down a hill into a valley, but getting up a hill is another story. Your muscles burn, you can't get enough air in your lungs, your pace gets slower and slower, and mentally you feel like you can't take another step. But once you crest that hill, your pace quickens, your lungs fill with air again, your muscles feel strong.

So, I guess as we begin this year, I feel like we have crested this hill. I know we couldn't have done it without all of you at our backs.

-Kim

Holiday

Hi friends.

Here's a little update on what is going on in our lives.

David had and eye exam about 1 month ago. Everything checked out fine. We don't have to go back to see the eye doctor for 6 months! This is the longest time we've ever been without seeing him since David was born!

We take David in on Friday, Dec. 10, for his next MRI. Thankfully, we have the earliest appointment - 8am. This will help to make the day a little easier as he will not have to fast as long, and we will have more time for him to wake up in order to go upstairs to see the oncologist.

Hannah has been back in public school now for about a month. She is really enjoying it and is doing well. She is learning that in order to keep up with the work, she needs to be much neater and more organized - a good life lesson, but a hard one for her. She's still taking piano lessons, and she's doing so well! I love to hear her practice each afternoon. She is entering the emotional roller coaster pre-teen years, so please pray for her mental, emotional, and spiritual protection as she enters this chaotic time.

Isaac continues to homeschool. I have seen a huge improvement in several areas this year. He is still having some struggles with focus and concentration, so please pray that we will be able to come up with some good tools to help him deal with that.

Both of the kids are feeling the need for some great friendships. There are a few kids around in the neighborhood that they play with, but they don't get to play with them that much. Please pray for some great friendships for them that will help them to grow as people and as young Christians.

Rob and I are doing fairly well. Rob's latest cholesterol test showed that all his levels are back in the normal range. We have worked hard on our diet to bring his levels down, so we were very excited by this news. Both of us have struggled with Irritable Bowel Syndrome, Rob worse than me. Lately, these episodes have been less frequent and not as bad as they have been in the past. This is a huge praise, since these episodes can be quite debilitating. We have been hit especially poignantly this holiday season of all the many blessings God has poured on our lives. We are so grateful to Him and to all of you for extending yourselves to us.

My parents are doing quite well. My dad is coming right along with the demolition of the burned house, and they are working on house plans for the new house. Their main focus right now is to build the house back basically the same as it was, but with a few changes that will make it more handicap accessible for my mom in her older years. There were several areas of the house that need a good bit of tweaking to make them really handicap accessible, so I know they would appreciate prayers that they will be able to make smart changes.

My grandmother continues to decline both mentally and physically. This is proving to be a huge challenge for both of my parents as Grandma is very disoriented. They could all use your prayers for God's grace.

My brother is trying to get back into his dissertation, but this has been a challenge for him. He is feeling quite disorganized still and this is quite discouraging to him. We would appreciate your prayers for encouragement, mental clarity and stamina, productivity, and for things to come together with his committee for his defense. He is so close to finishing!

Sorry to be so long winded. I have been trying to sit and write an update for some time, but haven't seemed to be able to get it done. We pray that all of you will have a particularly sweet Christmas and New Year. We love you all.

-Kim

Fire

Hi again, Friends.

I think recent life events probably deserve an update.

David has been doing well, although he has been fighting off one cold after another. We have had to reschedule his exam with the eye Doc. twice now, and I'm not sure when his next one will be. We are having scheduling conflicts for this one. He has fought the croup and then several other bad colds. I think this is probably just his body building up the immunities that it could not build up while he was on chemo.

In other sad news:

My parents house was burned down a week ago yesterday (Friday). No one was injured, except that my brother did get a lung full of smoke. The fire started with one of the golf carts that my mom uses to get around the property. It all happened very fast, and the damage was extensive. The entire first floor of the house was burned. The basement, although not burned, was flooded with water and much of what was there was damaged beyond repair. We were able to save a few of the books and pictures and the linens and things will hopefully be saved, but many of the books, electronics, my dad's tools, and furniture were too water damaged to be saved. This has been quite a blow to my parents and also my brother who was living with them while he is trying to finish his Phd.

I know that many of you all know my parents, and lots of people are wondering how to help them. I would say first of all prayer is needed. We have had many answers to prayer already in the last week. They have found a place to stay that should be a great provision until the house is rebuilt. The insurance people are really working well with them and should cover the costs of replacing the house. So, first, pray that the details of getting the house rebuilt will go quickly and smoothly.

Many people are offering furniture, clothing, dishes, and etc. They are so grateful for this show of generosity, however, at this time, they do not have a place to store these things. For those who feel lead, cash donations are the most useful at this time as they are finding that there are a lot of extra expenses involved with a situation like this - even with great insurance.

For those who would like to contact them, they are still getting mail at their old address. They have a new phone number, and their cell phones were burned in the fire. My dad is also still able to get email at his office, but my mom does not have a computer at this time. If you would like their current contact info, you can email me at rokihais@yahoo.com

We again, just appreciate your prayers as we know that God is a good and loving God and will provide for all of their needs.

Here is a link to some photos of the house - please let me know if you have trouble viewing this:

CLICK HERE TO VIEW PICTURES

Thank you all so much for caring for our family!

-Kim

All Clear

Hi! I just wanted to send a quick update out and let everyone know that David's MRI results were clear!! Thanks for all the prayer. It was an abnormally smooth day, and we were really grateful for all the prayer.

We did not do David's eye exam last week because he ended up getting the croup and they didn't feel comfortable putting him under anesthesia. So, his appointment has been rescheduled for October 1.

Thanks again,
-Kim

Upcoming Events

Hi Folks,

I know that it has been quite some time since I have updated, but I have been so busy!

We are all doing well! Rob and I are both starting to reach something like normal most days (although some of the stress related ailments still rear their ugly heads now and then). The big kids (and I) have started in on their new adventure of homeschooling already. We are slowly adding subjects week by week so that we can sort of ease into the routine of things.

David is doing very well. He is still having some issues with his prosthetic being comfortable for more than about 12 hours before needing to be taken out and washed, but relatively small problems considering the past 3 years.

We would appreciate your prayers for us all as David will be having another exam under anesthesia on September 3, and then an MRI and oncology visit on September 10. I still get very nervous about these and how they will go, so pray for them to go smoothly for him and that the results will still be that he is all clear!

Thank you all for your continued prayer and support. I will update you after his exams to let you know how they all went.

-Kim

David Turns 3!

I felt like I needed to write a little bit on the occasion of David's birthday! Sunday, May 30, our little guy turns 3!!

As I've been thinking about this blog, lots of things have been streaming through my head. I realized several days ago that I had not read any of my past blogs, so I forced myself to go back and read them all from start to finish (minus this one of course). Needless to say, it was very difficult for me. Many of the things written about in those blogs were hard enough to live through, much less remember. As part of my coping, I haven't let my mind contain anything but the current day, the current moment. But, I realize that now, in order to heal and to go on, I have to let myself remember. I have to look back on what has happened, the pain, the victory, the ways God has moved, and I have to let myself remember all of it.

I won't relive it all here in this post for you. If you are so inclined, you may go back and read what I have written in the past. But, I did want let you in on a little bit of what we remember. So, I have made a slide show of some of our favorite and not so favorite pictures. I am certain that some of you will not be able to view this, but I hope that many of you will.

We feel such great joy and thankfulness on this mile stone birthday. A year ago, we were facing 6 more months of chemo and 23 days of radiation. It was a scary time. In some ways, it will always be a scary time as we don't know what the next exam/MRI/blood test will hold. But, God has given us a joy in each day that I don't think we would have been able to have without having lived through all of this. I admit that my soul still feels raw. Maybe that is a good thing. Maybe it needs to stay that way.

Again, we are grateful to everyone who has shared with us in any way. We appreciate you all more than you will ever know.

If you can't view the video embedded here, you can enter this web address in your browser

http://www.youtube.com/watch?v=MjMl51_E_-U

I hope you all enjoy! We are celebrating life!!

-Kim

"The Lord himself goes before you and will be with you. Do not be afraid, do not be discouraged." Deutoronomy 31:8

Crazy

Hi There!

Do you ever have those weeks that you just can't seem to find your head? I have been having that feeling lately.

I guess I should start out by saying that David's exam went very well last week. Everything was clear and looking fine, so we are so grateful for that! He was a brave little trooper!

The big kids are in their last full month of school for the year! This makes me excited since I find it very hard to make them go to sleep before the sun even sets. The summer will be a great time for them, and I am looking forward to it too!

Hannah is going to be attending a special magnet school next year to be in the highly gifted program. (I can't remember if I told you all that before or not). Needless to say, we are proud of her and we are also glad that she has the opportunity in this school district to get this kind of teaching!

Isaac was going to be going with Hannah, but he has still continued to struggle a bit in math. We started him in school the day after he turned 5, so some of this may just be an age/maturity issue. But, Rob and I both feel that if he is behind now, he will just continue to be behind. So....we are going to take him out of public school and homeschool him next year. This is an exciting but intimidating proposition for me. I am currently trying to figure out what the best curriculum mix will be to help him be successful. Isaac is a great boy, but we both fear that he is just not built in a way that will succeed in public school. Our plan is to homeschool for one year and then see if he can re-enter public school in the 2nd grade, but we will play that part by ear. I think this will be a great year for Isaac, and David will enjoy having his brother home during the day!

Rob and I are doing alright. We have both had some interesting health issues. Rob has been diagnosed with Irritable Bowel Syndrome. This is a catch all term for - very stressed out stomach :-). I have had some similar bowel issues, heart palpitations, and a spasming muscle in my back. We have both been suffering from insomnia. After several visits by each of us to the doctor, we have been found to likely have our own little versions of Post Traumatic Stress Disorder. The doctor thinks that our bodies are likely just reacting to the stress that they have been under for the past 3 years. And, although it is nice to know what is going on with us, it is a very frustrating place to be. The lack of sleep alone makes it hard to cope with simple daily tasks, and likely worsens the other symptoms we've been having. We would both appreciate your prayers for us in this area.

On a brighter note, we are loving the warmer weather! We are loving our house and the lovely neighborhood that we are in. We are especially loving our church and the dear dear friends we've made there! The sunshine has been beautiful, and it is fun to see what flowers will bloom in our yard. In spite of our bodies, we feel blessed to have this life!

We also feel blessed to have all of you! Your caring and prayer has been the lifeline that has kept us going. You are all very precious to our family!

I don't know what is going to happen next. I know David has some appointments in the next few months, but I can't remember when they are. I'll keep you updated!

-Kim

Exam

Hi! I know it has been awhile since I have updated you all on the goings on.

David is doing really well. It is amazing how he has grown in the past few months. His vocabulary is exploding and he loves to sing songs to us! He has been well for a good long while - not even any colds!

We are all enjoying the warm spring weather and the beautiful flowers! David loves to be outside, and is quite a tough little outdoorsman!

We are taking the little guy back for a routine eye exam on April 30. We are hoping that this can be the last exam that we will have to do under anesthesia as David should start to be able to understand enough to cooperate for an in office exam by the next time we need it.

The big kids are doing really well in school and we are very proud of them!

Rob and I are doing alright. I think that the stress of the past 2.5 years has started to have it's effects on both of us - manifesting itself in irritable bowl syndrome, sleeplessness, indigestion, heart palpitations, and the like. It has been an ordeal for both of us to deal with these physical issues now that the main portion of the stress is over. But, we have found a great doctor who is walking us through these issues, and hopefully we will be able to get back to a healthy state again soon. We would appreciate your prayers on these issues for us, though!

We are looking forward to the summer when the kids are out of school. We are loving our house and our great yard - although we have quite a large poison ivy issue that we are trying to get under control. The yard is going to take a lot of work in order to get it completely usable, but we are loving it anyway! Rob loves being so close to work, and I love the convenience of Clemmons. I am just a couple of miles away from any and everything that I could possibly need. It is such a difference from where we were in Greensboro!

I hope the spring finds you all well!

-Kim

Good News!

Hi everyone,

Please excuse this post if it is somewhat disjointed, but I wanted to let you know that we just got home from David's first off chemo MRI.

It was CLEAR!!!

Also his blood tests were clear, so that is great! His counts seem to have recovered very nicely.

It was a very long and tiring day, and my head is so tired.

Tomorrow, we all head up to VA to attend the funeral of my Uncle Mark - my Dad's brother. Although he will be missed, it is a comfort to us to know that he is with the Lord and that he is not in any more pain or discomfort.

Thanks for all the prayers, I'll try to update you a little more soon when I can think better.

-Kim

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