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Friday, March 9, 2007 1:11 PM EST
Yesterday, after a long emotional day, our caring, sensitive cat, Princess Purple, decided we needed a bit of a distraction. She left us a small, dead brown bat at one of her favorite spots beside our bed. At the time all I could think was, Oh that’s all I need. But, now when I think back on it, I think she was just doing her best to cheer us up. She must have heard my tears of grief and exhaustion. I fell apart just as we finished dinner. Karl ended up choking twice while we were eating and our usual brief break from the real world became an awful time. Karl is the one who ended up clowning around to cheer me up. He does crazy stuff with his sweat pants and that did the trick.
My animal lover cousin, Nitjse, came to visit from Asheville and she went with Karl and me to buy some new toys for our lovebird, Petey, at Pet Smart. Karl has read that it is good to keep changing toys and perches in the cage to keep them entertained and help their feet. We bought him a mirror and all he would do was sit in front of it a stare at it. We decided to limit his mirror time. We also had fun checking out the cats they had there for adoption.
We then came home and had a 2 ½ hour meeting with Home Health Care/UNC Hospice. We were originally set up with a great group of folks from Hospice of Wake County, but when I really realized what we were getting into I wanted Karl to have a male nurse and I found one through UNC Hospice. A caring, gentle man named Roland Siverson and we all feel comfortable with him. Turns out he knows old friends of Chinks and folks from the Farmer’s Market. Karl’s reaction to the group who came last week was that he didn’t want them coming into our home. Lots of yelling. Up until now we have always traveled to the doctor and kept that separate from our safe, comfortable home. Now we’re all having to deal with new people in our lives and most of you know we are very private people and love and require our space. We are all pretty burned out.
Karl continues to have trouble with his balance (lots of falls), his left arm and leg, swallowing (drooling), coughing and choking, taking a deep breath and the worst of all his inability to often speak clearly. Sometimes we have no trouble understanding him, but usually it is a frustrating guessing game. Our little actor and lover of big words finds his days exhausting.
Please keep praying for him and us. Find joy in being able to take a deep breath, walk or run without trouble and telling a joke and having people understand you. We are learning each moment is very precious.
Love, Kathy
PS
As I wrote my update of course I'm writing from my perspective. I thought you'd enjoy knowing Karl is fighting this every step of the way. Every intusion or change to his life is complained about, cried about and when he thought it would help him get through his day easier, finally accepted.
Yesterday when we were all driving home from the hospital Karl asked what you learn at a chef's school. When we explained he remined us he had heard about it in Home Ec and he thought he might like to do that some day. Last week when he was really sick of being home and tired of my helpful ways, he told Chink that when he went to college he was NOT going to live at home.
So, when you are 13 years old the sky is the limit. Even if you have to use a wheel chair to get there.
Peace to you all on this beautiful Saturday.
Love, Kathy
Friday, February 2, 2007 8:08 AM EST
In the past whenever I'd send out this update I'd always try to be upbeat and see something good in our situation, but today I’m having trouble doing that. So, I wonder should I just not write and share my pain and worry? But, then I know how supportive you all have been and some of you are wondering how Karl is doing. The chemo is making him extremely tired, his balance is off and his beautiful voice sounds like a frog has moved in to stay. He is going to school and doing as much work as he can manage. He has found if he stays home it gets to be boring and there is too much time to think. Socially 7th grade is much different than is was in 4th grade when he started on his first round of chemo and this adds to Karl’s stress. I know I don’t remember those Jr. High days fondly, do you?
My mom, Josie, Chink and I all need your prayers for strength. Karl needs them for healing and strength.
Thank you for your support.
Love, Kathy
Friday, January 26, 2007 2:46 PM EST
This is just a brief note to say that Karl is doing well. He has been on the meds a week now and we haven't noticed any side effects. This weekend we'll try a night without the Zofran (for nausea) and see if he really needs it. Dr. Gold thinks he won't need it. He is pretty tired by the end of the day and he decided to stop the meds for sleep. They were making him feel groggy in the morning. Chink and I are ever watchful for any new symptoms from the tumor. Of course his eye is off and he had developed some occasional balance problems (but then its hard to separate those from normal growing boy clutzes--his size 11 shoes we bought this fall are getting tight) and his voice seems different. Sometimes harder to understand. But hopefully these meds will stop the tumor and we can get on with every day life. Oh for a boring day!!!!
He is off at school today. I went on a field trip to the Imax theatre with his team this past Wed. A very smooth and enjoyable trip.
Please keep those prayers coming.
Love, Kathy
Monday, January 22, 2007 9:23 AM EST
Karl started his new meds Friday night and he seems to be handling them pretty well. He is taking Celebrex and a chemo drug called Cytoxan. Plus we are doubling up on the enzymes we get through Ken Morehead. He is also taking Zofran to prevent nausea and something to help him sleep. Some of these need to be taken with food, some without food. I’ve made myself a chart to keep it all straight. Our 6 months off without any meds beside the enzymes sure was nice. This is really hard to start up again. He will take the Celebrex every day and the chemo for 21 days with a week off. On the 28th day he’ll have a doc checkup and blood work.
Karl’s 15 year old cousin, Michael, came to visit this weekend. They had a great time playing on Sat. He is very easy going and a good distraction for all of us.
Karl went off to school this morning on the bus feeling pretty good. Just a little tired. They start new electives this week and Karl is excited to be taking two art classes.
Please keep him in your prayers and pray the medicine does the job. Thank you for your continued support.
Love, Kathy
Tuesday, January 16, 2007 9:43 AM EST
Karl's MRI last Friday showed that the tumor has changed and grown a little. He will probably be starting a new chemo later this week. As you can imagine this has been hard on all of us.
Please continue to pray for Karl.
Love, Kathy
Monday, January 1, 2007 2:35 PM EST
We have all had a very nice vacation from our usual schedules. Karl goes back to school tomorrow and I'm sure it is going to be a little hard to pull it together and get back into that routine. The first thing he said to me this morning was I have to go to school tomorrow and I said, no you're suppose to say "happy new year". First things first.
Karl has his next MRI on January 12, so please be thinking of us then. Our family wishes you all the best in this new year and we thank you for your continued support.
Love, Kathy
Friday, December 15, 2006 11:54 AM EST
The photo above is how Karl dressed up for Halloween. A wacky mix of characters. He had fun going out with his friends Max, Peter, Jon and Wesley after a fun dinner at the Sloan's house. His energy level has definitely improved. He has been off the chemo since last March and we can all see the difference. Most of the time we are all able to forget and that helps us all.
The Phillips school play, "The Wind in the Willows", was a big success. Karl played the part of Mr. Badger and came across as a respected, older British gentleman and did a great job. His friend, Max Huffman, played Mr. Toad and you can see their photos on the photo page. Max was really funny and he said it took days to finally get all of the makeup off. They put unbelievable amount of time and energy into the production and I applaud them for it. Karl, and then Max came down with a cold right before the first performance and Karl actually threw up back stage while they were putting on makeup—poor Mrs. Nadas, but he kept going and did his job. He told me that morning as I drove him to school that he wouldn’t miss this for the world. We have all worked too hard. And you know, the show must go on. The froggyness of his voice from the cold made it even gruffer and they fortunately already had a mike on him, so only a few of us realized he wasn’t feeling well. Also since his character was old he was able to sit for part of his time on stage.
He is enjoying the freedom of riding the bus home from school now, instead of staying after for practice. We have both enjoyed his riding the morning and afternoon bus for the first time since he started public school. In elementary school the bus was either too early in the morning or too noisy in the afternoon and last year he was a transfer student into Phillips, so we had no bus service. This year our area was redistricted back to Phillips, so we get the bus. I now realize how much of my day was spent driving to and from school and waiting. Karl also enjoys the independence, which we hear he’ll want more and more as time goes on.
Karl had a good check up with his dentist, Dr. Howden. Our thanks goes out to his office. This time Karl made the connection between flossing more and not having them use that “little pick” so much. He has been flossing more and he found it made a difference.
He has 3 more days of school until winter break. I know everyone at school will enjoy the break. He continues to enjoy school and has found he needs to study more this year. He has some good teachers and they are challenging him.
His next MRI is January 12, so keep us in mind on that day. Chink, Karl and I all hope you have an enjoyable holiday. We thank you all for your continued support. This will be our third Christmas since we found out about Karl’s brain tumor and we rejoice in the fact that he is doing so well, growing like a weed and enjoying life to its fullest.
Love, Kathy
Sunday, October 29, 2006 11:06 AM EST
MRI Day. Our day started early. Pretty typical for Chink and me, but on a teacher workday Karl would have normally slept in some. I woke him at 6:30 and he popped out of bed and informed Chink that he was working on waking up quickly. No complaining or grumbling. As we drove out of the driveway at 7:05 I thanked Karl for being so great about getting up and going. He said he liked getting up early. He just usually didn’t do it every day because it used up too much energy. We had great luck with parking because of the early hour and got the 3rd parking place in the whole deck. Most people must have driven right by it. As we were walking across the bridge that connects the parking deck to the hospital and crosses Manning Dr., Karl said “Look”. We got to see the most beautiful sunrise ever. That road must run due east and there were just enough clouds to capture the sun’s rays and the sky looked like one of the paintings I’ve been painting lately. Pink and yellow and beautiful. Oh, where was my camera?? As you come off the bridge the sidewalk splits and the majority of the people go left to the main hospital and those of us going to the oncology building and wanting to us the lower level entrance near the radiation clinic walk on this path that has been planted as a “Survivor's Garden”. Perennials, annuals, bulbs and there are about 5 very lush green trees. And as we walked under those trees there were all of these birds singing. It was wonderful! We looked up and Karl says he saw one, I never did. It seemed like Disney World and still wonder if it was real or some recording. What a great idea that would be. Motion activated bird songs.
To jump ahead, Karl’s MRI showed the tumor is still stable—Yeah!!! So now we make an appointment for 3 months from now and hopefully sleep better tonight.
We got to the clinic before 7:30 and by the time I had signed Karl in at the check-in desk, Dr. Gold had already stolen Karl’s left tennis shoe. He was hobbling all around the clinic trying to find it. The head nurse told him to check the trash cans and Karl told me later that he had to play a “hot and cold” game with Dr. Gold before he could find it. While Dr. Gold was giving Karl his check up he told him what he planned to be for Halloween. He’s going to wear a white doctor’s coat (which he never wears) and wear a duck bill and duck flippers on his feet and go as a Quack! When I talked to him, he told me he’s going to wear it at the clinic Tuesday and hopefully people will be able to figure it out. Crazy, but wonderful guy.
Karl has grown another inch and gained 10 more pounds since his August checkup. He’s now 5’9” and weighs 145 pounds. That’s 3 inches since June. His body is playing catch up.
Karl continues to enjoy school and the school play. For those of you who’d like to see a wonderful production of “Wind in the Willows” the show times are Nov. 17 at 7:30 PM, the 18th at 7:30 PM and the 19th at 3:00 PM at Phillips Middle School.
Yesterday was a beautiful fall day and Karl and his good friend Jon Aycock were playing around in the woods near the nursery. They climbed up in the old tree house and as Karl stepped on the plywood floor a rectangle section gave way and he fell through to the ground. He got some good bruises and it knocked the breath out of him, but no broken bones. Whew, are we thankful for that.
Thank you for your continued support and prayers. They sure help us all.
Love, Kathy
Wednesday, September 13, 2006 2:17 PM EST
School is underway and Karl has jumped in with both feet. The lazy days of summer are definitely over! He has auditioned for the play again and was chosen for a part. They are putting on "The Wind in the Willows" and he is playing the part of Badger. All of the kids are suppose to use a British accent, so Karl has been practicing his along with his lines. He has practice every afternoon this week, so he is pretty tired. At least this year he won’t be dealing with the chemo, too. His good friend Max Huffman is also in the play (playing Toad), so that is fun for him. He really does enjoy it all. He just has to remember how to juggle a lot at one time.
He is enjoying his classes and the one we hear the most about is Home Ec. I think it is because they are cooking right now and that is an enjoyable way to end his day. Their classes are 46 mins long and his teacher has to find recipes where they can prepare, bake and clean up all in that amount of time. She often has the steps broken up into more than one day. They have made muffins, pizza and cinnamon rolls.
During Karl’s last hospital check-up, they noticed that one of his shoulders was lower than the other. I ended up taking him to Dr. Presas, a chiropractor who is really great with kids. He has 5 of his own. The ex-ray showed his spine was definitely curved, so he started some adjustments that Karl said felt great. His sudden growth spurt while slumped in front of a computer didn’t help any. Dr. Presas suggested Karl sit on an exercise ball while he’s at the computer. It keeps the spine moving some. His alignment is already better.
He had a good acupuncture treatment with Ken Morehead yesterday and he is in pretty good health. His body is recovering nicely. He is also able to treat the spine alignment to get the energy moving in the right direction. Acupuncture is definitely good preventative medicine and works quickly on a 12 year old.
Karl’s next MRI is Friday October 20. Please keep the prayers and healing energy coming.
Love, Kathy
Saturday, August 19, 2006 1:15 PM EST
Our news once again is good. Karl’s latest MRI showed that the tumor is still stable. The timing of these two summer MRIs worked out well. It gaves us two whole months off. I had the feeling you have when you come home from vacation going back to the hospital. Kind of a shock. It is such a different world. We are very thankful for that world, but it is stressful going there. We discovered Karl has grown an inch and gained 14 pounds since June 21!
We had a terrific week at the beach. Karl’s cousin Michael went with us and we all enjoyed swimming, reading and playing board games. Michael is in the middle of a growth spurt also and was very interested in eating. The ocean was beautiful and clear and relaxing.
Karl starts school this Friday, August 25. It is hard to believe summer vacation is almost over. He’ll be in 7th grade this year.
Thanks for your continued prayers.
Love, Kathy
Saturday, July 22, 2006 2:05 PM EST
Karl is totally off the meds and its GREAT! Dr. Gold gave us the go ahead to stop the weekly antibiotic and now my job is to get him to take some probiotics to repopulate his system. He has been on these antibiotics for over 2 years! It was 2 years in March. Can you imagine? He doesn’t remember what it felt like without taking them. Ken Morehead feels Karl will have a lot more energy and won’t get tired so easily now that he’s off the antibiotics. He also said to expect a growth spurt—height and weight. Should be interesting.
Karl really enjoyed the Movie Makers Mockumentary Camp this week. Its right up the road on Turkey Farm Rd. and three of his friends were there too. Sammy Roberts, Max Huffman and Peter Lucier. They will all get a copy of the finished movie. We feel they did a terrific job and had the group working together pretty well. Karl says everyone really wanted to be there and do the work. There is a party and premiere showing of all the camp videos in August. It should be fun to watch.
Karl’s next MRI is scheduled for August 18. Please continue to pray for him. We are all very thankful for his continued good health. Enjoy some summertime fun.
Love, Kathy
Saturday, July 1, 2006 6:45 PM EST
Last week Karl had a medical check-up week and all of the news was good. He started off with teeth cleaning at Dr. Howden’s office. He had been complaining about going to the dentist, but as we got out of the car to go into their office, he said, you know it’s really not so bad in there. The staff and Dr. Howden do a terrific job with making kids feel comfortable. His teeth look pretty good and he got the old pep talk about flossing. The drugs he has been on for the past two years are pretty strong and his gums as well as the rest of his body will need some healing time.
The MRI showed the tumor is still stable. Yeah!!! And his blood work, including thyroid and pituitary glands was all good. He is now 5’7” and 131 pounds. Our MRI time took lots longer because they wanted to do an additional test that could only be done on one machine and we had to wait for it to be available. Karl was grumbling and tired of lying still. Ready to move.
He then had a check-up with Ken Morehead and his acupuncture treatment was pretty quick because there was nothing really major going on. Just some general clearing out.
Karl was at a Bike ER camp at Carolina Friends School this past week. He really enjoyed the last two days. The first day he greeted me at the car saying he had just run into a tree (oh great, I thought) and the second day he was riding a bike that turned out had no rear brakes and he panicked and using the front brakes flipped him over the handle bars. From that he said he’s learned to always check the brakes before riding a different bike. He got way too tired from the heat and exercise. He is still pretty tired from the continued antibiotics and he’s just not used to moving and bike riding for 6 hours. I told him he needed to learn to pace himself and not over do it. His enthusiasm is there, just not the stamina.
He has started fencing lessons in Chapel Hill and really likes them. So far he has not been interested in team sports, so its nice for him to find one he likes. We talked about how many things you have to try in life before you find ones you really like to do.
He is free of doctor visits until his next MRI which is August 18. Please keep him in your prayers and we thank you for your continued support.
Love, Kathy
Thursday, June 15, 2006 6:54 AM EST
We have a change of plans. Karl’s next MRI has been rescheduled for June 21st. Dr. Gold is going to be out of town on the 16th and surprisingly we were able to get a new MRI appointment just the next week. One of the things Karl’s medical situation has taught me is you have to be flexible. We made this appointment 4 months ago and ever since February I have been working on planning summer camps and other doctor and dentist appointments around this date. I think it is human nature to want everything planned out, but sometimes life doesn’t go that way.
Karl has been enjoying his time since school ended last Friday. Lots of reading, computer games, Gameboy games and some swimming. We were both sad to have 6th grade come to an end. Karl had a really good year at Phillips and he really enjoys school. Since we live out in the woods we have to work at play dates and we have found that most of his friends are busy with camps or vacation, so we need an extra calendar to keep track of who is in town.
Thanks for your continued prayers.
Love, Kathy
Saturday, May 6, 2006 5:30 AM EST
My delay in posting this journal entry is because I’ve been so busy. As most of you know this is the busiest time of the year for our perennial plant nursery plus my mom had successful hip replacement surgery on April 10. Her recovery is slower than she expected. She has never been one to just sit around and she’s been doing a lot of that this past month. Our Karl news continues to be good. I started this weeks ago after our last hospital visit.
April 25, 2006
We had good news last Friday. Karl had another MRI and it showed that the tumor is still stable! Dr. Gold also decided that Karl had had enough chemotherapy, so he didn’t have to take this last round as we had expected. He said that Karl has been on it a year longer than is called for and that one more month wouldn’t make a difference. It was just as well because Karl ended up with a stomach ache and fever over the weekend, so I’m glad we didn’t have to add the chemo on top of that. I’ve heard that some of his friends have had it as well.
Other good news is that we don’t have to go back to the hospital for two months!!! Pretty strange feeling since we have been going every two weeks for two years. He’ll have another MRI and checkup then. I asked Karl how he felt about this change in his life and he said he wouldn’t miss taking the medicine, but that he would miss the people at the hospital. They are definitely his friends and a part of his life. I remember two years ago while he was going in for radiation treatments every day for six weeks, when it was over he cried because he realized he’d miss the people who cared for him.
So, yesterday was the first time in two years that Karl and I haven’t gone to the hospital for his every two week blood check. And you know, we didn’t miss it at all! We’re just going to get on with life and pray for the positive. Karl is continuing to take preventative enzymes from Ken Morehead and he will continue his accupuncture, but just not as often.
Please continue to pray for him. His next MRI will be June 16.
Love, Kathy
Saturday, April 1, 2006 6:45 AM EST
Karl had a good checkup this week with Dr. Gold and his blood counts were good as well. He started the chemo a week ago and finished up on Tuesday. He has been on spring break from school this week, so he has had lots of time to rest. He has played with friends, read, played his game cube and had fun on his bike. The pace he sets for himself is much better for him while he’s recovering from the chemo.
We found out from Dr. Gold that he will have just one more round of the Temodar after this one. He has been on this chemo drug for TWO YEARS!!!! and they say that is enough. I guess there is a limit to how long your body can handle these powerful drugs. Now will be a time for Karl to heal. He will continue to have a monthly doctor checkup and an MRI every two months. Karl is counting down the days and we’ll have some celebrating to do. What a strong boy he is!
Thanks for your continued support. Keep praying for Karl.
Love, Kathy
Monday, February 27, 2006 12:07 AM EST
We had an early day at the hospital on Friday—two doctor checkups and an MRI all before 9:00. Karl later told me he felt like he was in a dream all day. Pretty tiring for all of us. Karl made us all enjoy it more by wearing Chink’s black fedora and disguise glasses and nose. Blythe Devlin gave him these for his birthday along with other tricky things. One was a hand buzzer which he used on everyone who would shake his hand. Dr. Gold saw that coming and refused. Everybody in the clinic loved it. Karl’s acting experience (thanks Mrs. Nadas) and the fact he feels so comfortable with the hospital staff allowed Karl enjoy himself.
Our continued good news is that the tumor is still stable. Karl got to use the brand new MRI machine, so now they have 4 machines running. They also put him in one of the old machines for 3 tests. Since they are tracking him they wanted to make sure the images from the new machine were consistent. His blood counts were good as well and he is now on the monthly chemo.
Karl was also examined by Dr. David Morris (Radiation Oncologist). It has been months since he has seen Karl and he was really excited about the improved movement of Karl’s left eye. (Remember the eye crossing is from the tumor.) He said Karl could be a poster child! He wouldn’t let Karl do the buzzer thing on his hand either. How did the doctors get to be so smart?
We had a great birthday party for Karl. 11 of his friends came to our house last Sunday. Bike riding in Duke Forest, board games, cake and ice cream and some sort of wrestling match on the trampoline. Lots of boy energy!
Thanks for your continued support. It is definitely helping.
Love, Kathy
Thursday, February 9, 2006 10:44 AM EST
Karl’s round of chemo went pretty smoothly this month. He has been tired, but not so he had to stay home from school. So, I guess the exercise does help.
Last week he had his 6 month check up with Dr. David Wallace, his eye doctor. His eyes checked out 20/20 and Dr. Wallace again felt the original crossing was better. If you remember two years ago this was our first sign that something was wrong. Karl’s left eye was crossing and not tracking correctly. Dr. Wallace is the one who sent Karl for his first MRI and the one who called us with the news. Last summer his careful measuring indicated that Karl’s eye had improved and 6 months later this check up confirmed that. Most of the time Karl is not even aware of his double vision because his young brain has learned to compensate for it. Only when he is asked about it does he think about it.
Karl has his 12th birthday coming up on February 19th. We’re hoping for good weather because we’ve planned a bring your bike and ride in Duke Forest party and then games here at the house after they’ve burned off some of that boy energy. One year for his party Karl and I had practiced some neat magic tricks and made the mistake of putting on the show just as the group of boys arrived. They could no more sit and pay attention than fly to the moon. They came all excited about the party and just being together just fueled their level of energy.
His next round of chemo starts February 24, so he’ll be feeling good for his birthday. He also has an MRI on the 24th at 8 AM, so please be thinking of him then. Thanks again for your support.
Love, Kathy
Tuesday, January 24, 2006 10:23 AM EST
Karl’s last round of chemo went pretty smoothly. He didn’t get as tired and seemed better able to handle all of the every day stress that happens to a 6th grader. The tiredness caught up with him the following week, but it wasn’t as bad as it usually is. There are only two major factors that were different. He had just finished up two really nice weeks of vacation surrounding Christmas and he has been getting more exercise because of PE and riding his bike here at home. The exercise I think is the reason he was able to handle it better and we’ll test it this next week as he starts the chemo again this Friday. It has been incredible to watch his energy and endurance increase in the weeks since he started getting more exercise. He walked with me in Duke Forest Monday morning (teacher workday) and he kept right up with no complaining—even up the steepest hill.
Today is the beginning of the second semester at school and Karl is excited to be starting new classes. Art and Keyboarding end and Theatre and Applied Tech begin.
Please think of him this next week and pray the chemo does the job and that he’s not too tired. Thank you for your continued support.
Love, Kathy
Sunday, January 1, 2006 1:22 PM EST
We have had a great Christmas holiday and it was made even better with the news that Karl’s tumor is still stable. We went for an MRI this past Friday, December 30. This is our second Christmas since we heard the news about Karl’s brain tumor and the folks who take care of him at the hospital have a very special place in our hearts. The crowded clinic has a different group of kids and families each time we go and with all of the months behind us I’ve gotten pretty used to going. It is not a place you’d ever want your kid to have to go, but since we do, I’m glad they are able to create such a welcoming place. As you pray for Karl, please include the other kids and their families.
Karl started the chemo again Friday night and so far he is feeling good. He has been playing with friends, riding his bike and eating well. We had a good trip to Charlotte to visit my brother and his family and Karl said he was actually able to forget all about his treatments. While we were at the hospital I asked him if he had anything special he was going to work on in the new year. He said he’s just going to “keep on chugging”. Last night as I was giving him his oral chemo drug I told him I was proud of him for not complaining about having to take the medicine and then I corrected myself and said it was OK to complain about it if he needed to, but that I was proud of him for handling it all so well. He said, remember I said I was just going to keep of chugging. We’ve got a very strong boy and Chink and I are both very proud of him. He has grown a lot in the past 2 years. He has grown 5” and gained 25 pounds. He is now 5’7” and weighs 121 pounds. And most of that was while he was on chemo! Pretty amazing.
Happy new year to you all. And please keep up the prayers.
Love, Kathy
Monday, December 19, 2005 7:38 AM EST
Karl made it through another chemo round with a bad cold on top of it and now he is feeling good. He stayed home from school last Monday and Tuesday feeling bad from the cold and tired from the chemo. He had a good acupuncture session with Ken and we learned how to make Ginger Steam. The cold had really settled in his nasal passages and showed signs of moving to his lungs. I’m sure most of you have heard of or used yourself a big pot of steaming water and a towel draped over your head. Well, after it boils remove it from the stove and add a palm full of fresh grated ginger. Drape the towel over your head and inhale the steam when it is cool enough. Take it all the way to the bottom of your lungs. This is very healing and loosens that stuff up.
Karl went back to school on Wednesday, worked on catching up on missed school work and jumped right back into his PE class. He started out the year taking health and after Thanksgiving his class switched to PE. He has a terrific teacher, Jon Beyle. Karl says he even makes warm-ups fun. Karl is so glad to be moving for an hour or so during the day and sore muscles make him realize he needs to get more exercise.
His next MRI and chemo round is December 30, so please be thinking of him on that day. The timing worked out really well because he’ll be feeling good for Christmas. We learn to be thankful for the little things.
We hope you all enjoy your holiday. You can bet your booties Karl will.
Love, Kathy
Tuesday, November 22, 2005 9:07 AM EST
Karl was in the play “Mischief in the Magnolias” this past weekend at his middle school and it was a BIG success. For those of you who came to see it, you know that he was the hero in the play and he did a great job. It was all lots of work, but he’s glad he stuck with it. That’s a mighty good feeling to finish something you start and there were many days when he didn’t think he could handle all of the work.
His teachers have been great working with him on missed classes and homework. The performances for the school had him out of regular classes and he also missed two days of school last week with a flu type bug on top of his chemo recovery. He was feeling good by show time and he was able to really enjoy it.
He went in for blood work this past Friday and his counts are really good. I guess acting is good for his health! He has met lots of nice kids because of it and feels good about knowing more people at school. This is also good for his health.
Thanks so much for your continued support and please keep praying for him.
Love, Kathy
Wednesday, November 2, 2005 11:13 AM EST
Karl had a great time trick-or-treating with his friends Patrick and Mike Conway. We went over to the Springcrest neighborhood, because as you know we don’t have a good neighborhood for trick-or-treating. There were lots of kids out and we all got pretty tired walking—even our dog Rusty.
Karl is still working pretty hard on this play practice, which is every day now. They will start giving the play in three weeks and by then I think we’ll all be saying his lines in our sleep. Remember it is November 18, 19 and 20 if you’re interested in seeing it.
They have just finished the first quarter in school and we’re all very pleased with Karl’s grades. With all of the added things he has to do connected with his treatments he’s lucky school comes so easy for him. Lots of time during the month he really doesn’t feel like doing school work and we’re all very proud of him for sticking with it.
He goes in for another MRI this Friday. It seems like we were just there. He will stay and have his monthly checkup and then start the chemo Friday night. He has been feeling pretty good this week, so he gets to start the cycle all over again.
Please continue to pray for him. And thank you for your contined support.
Love, Kathy
Friday, October 7, 2005 7:28 PM EST
Back in school sure does make for a busy schedule! Karl is finding that middle school is much more demanding of his time and energy. He says he can deal with it all fine during the day when he is going through it, but by evening I think it all catches up with him and sometimes he crumbles. He has been getting better at dealing with all of it, but we have found that the added stress has made his recovery a lot slower. His teachers and the staff at Phillips have been very helpful with the work he misses if he misses school. He has a wonderful counselor, Phyllis Farlow, and she has been lots of help to us.
He has been enjoying play practice. The name of the play is “Mischief in the Magnolias”. So far he has just been practicing once a week, but soon that will change. Mom and I have been helping with the sets. The drama teacher asks all the families to volunteer with all the many aspects of putting on a play and we’re finding her very demanding. The word is that her productions are worth it. The play will be held November 18, 19 and 20.
Karl had a good check up today and his blood counts are good. He starts again on the chemo tonight, so pray that it does it’s job and that Karl doesn’t feel too tired from it. Thank you for your continued support and prayers.
Love, Kathy
Monday, September 12, 2005 11:38 AM EST
Karl went in for another MRI on September 9 and the tumor is still stable and his blood counts are good. We are very thankful for this continued good news. He started the chemo again on Friday night and so far he has been feeling good. I take him for an acupuncture treatment tomorrow after school and that should help his body detox.
He is getting into the swing of school and becoming more used to doing homework again. He auditioned for the school play last week and was chosen for one of the 6 acting parts in the play. It was open to anyone in the school. He is very excited about this. It is a big commitment and sounds like a lot of work. They start practicing this week and the performances will be in November. We think it is a great thing for him to be involved with.
Thank you for your continued support and prayers.
Love, Kathy
Saturday, August 27, 2005 5:15 PM EST
Karl has two days of 6th grade behind him and they have been good. The staff and teachers at Phillips Middle School have done an excellent job of introducing the kids to the complex routine of changing classes. They are allowing time for all of these new ideas of semesters, quarters, electives and Prime Time (we used to call it Home Room) sink in. Karl and I went to orientation on Tuesday morning and we met the core teachers and were given a tour of the school. Afterward I had to come home and take a nap and Karl was fine with it all. His electives are Health/PE (he has health this quarter), Keyboarding and Design. His core classes are Math, Science, Language Arts and Social Studies. He will definately have lots to keep him busy this year. He is also planning on trying out for the school play and is looking into Cross Country.
We had busy days with doctor visits the week school started. I wanted to fit them in before we had to start working around school hours. On Monday Karl saw Dr. Morris (Radiation Oncologist) and he told Karl that on a scale of 1 to 10 he was doing a 100! He is very pleased. We then went up to the clinic and had blood work done and found his counts are still good. And then we drove to Durham and Karl had an acupuncture treatment with Ken and he said he was just fine tuning the points. No major blockages in his energy flow. On Wed he had an eye exam with Dr. Wallace (now moved to Duke) and he feels his eye crossing has improved. He wants to see him again in 6 months to actually confirm this. It could be that Karl’s eye were better because he was all rested up from summer vacation, but I think they are better. I hardly notice it any more. Maybe those days of soaking in salt water at the beach and building sand castles is as healing as it feels.
So, all of those check ups were good and we thank God for that.
He has another MRI on Friday September 9 and he will start the chemo again that day. It used to be holidays that segmented the year in my mind, but I find that these MRI dates compete for attention. I go in and sit in the room with Karl while he has the MRI. They make you leave metal objects in a locked locker so I end up meditating and praying instead of reading. Karl was trying to think of how I could get some plastic reading glasses. He can’t imagine just sitting. Some times just sitting is good. I have never liked the enclosed, machine oriented feel of a hospital room, but as I sit there meditating I definately feel Gods love and energy with us. Please be with us and pray for healing. Thank you for your continued support.
Love, Kathy
Thursday, August 11, 2005 6:44 AM EST
We had a great week at Lake Santeetlah in the NC mountains. Beautiful clear water, perfect for swimming. We rented a boat and Karl and I went tubing. We also went white water rafting on the Nantahala River. We had a really experienced guide who insisted we call him “Captain Dan”. There were two other boys about Karl’s age in our raft and he made it really fun for them. He talked about snakes dropping in the raft from the overhanging trees and he would slap the water with his paddle and claim he’d killed a snake and it made lots of noise. He also ran us into rocks and made the raft spin around. We all had to shift down to the middle of the raft to keep from falling out. Great fun.
Karl had his monthly check up yesterday and Dr. Gold thinks he looks great. He started his chemo last night, so pray it does its job and that Karl’s body handles it well.
Last month Karl learned another hospital clinic skill from Dr. Gold. (Last month it was how to shoot rubber bands with one hand). He learned how to fill a plastic exam glove with water, tie it off and it makes a glove water balloon. He and Karl started throwing them at each other. Imagine being able to lob a water ballon at your doctor! So much fun for Karl. Last month Dr. Gold filled a glove with so much water it was the size of a small soccer ball. He walked around chasing Karl with it. Yesterday they were lobbing it back and forth in the hall and on one of Dr. Gold’s throws it hit the floor and burst. So, we all ended up mopping it up with towels. This is all while the clinic is packed with kids and their families. All the staff just keep working and pass us saying, oh there’s Dr. Gold making a mess again. Karl loved it and was laughing SO hard. I have come to realize that Dr. Gold uses this play time to see how Karl is doing neurologically. It sure beats the routine exam.
Thanks for your continued support. Keep the prayers and healing thoughts coming.
Love, Kathy
Monday, July 18, 2005 10:07 AM EST
The good MRI news is that the tumor is still stable. Everything went pretty smoothly. On our early morning drive through town to get the the hospital I spotted a group of young kids crossing the street. I said to Karl, “Look, I bet they are here at one of the sports camps” and Karl said jokingly, “Yeah, and I’m headed to MRI camp.” I told the oncology nurses about it and they had a good laugh. MRI jokes. Thats a way to handle it.
Karl did enjoy the arts camp that is being held in the pediatric oncology clinic. He had so much fun he didn’t want to leave. He got to design a T-shirt, make a power bracelet and model with some colored beeswax. It was a wonderful opportunity for the kids to interact with each other and we parents enjoyed the experience as well. It is a tense place for all of us to be and the distraction was welcome. I will include the link to the web site below if you’d like to learn more about the group putting on the camp.
Karl is now on the chemo and the summer schedule of not rushing out the door first thing in the morning agrees with him more. We picked up the new Harry Potter book on Saturday afternoon and he finished it last night. He also played all Sunday morning with Chink and went to the new Charlie and the Chocolate Factory movie with Patrick’s family.
Thanks for your continued support.
Love, Kathy
P.S. I forgot to tell one of the funny things that happened last Friday at the hospital. For me there is a lot of stress just getting to the MRI waiting room at the appointed time. I'm one of those people who just has to be on time and as I'm sure you all know there are all sorts of things that can delay you. Traffic, parking, check-in, and emergencies in the clinic. I'm trying to learn to relax a bit about it all, but it is hard. Well, we actually left home at 7:30 and got to the waiting room early. The waiting room was pretty much empty and we have learned to ask for the TV remote because Karl can't handle the adult soaps that seem to always be on. He was able to find a really funny episode of Sponge Bob and we were both having a really good laugh. And Karl got the hiccups! It took me a few seconds to realize that's one of the worst things you could get if you were suppose to hold absolutely still for an MRI. I went and asked the receptionist for a cup of water. We have this technique for getting rid of hickups. You stick your fingers in your ears and with someones help drink water. This time it took the whole glass of water to work, but it did. The receptionist had never heard of that before and loved it. I was just glad it worked!
Saturday, July 9, 2005 12:38 AM EST
Here it is almost the middle of July, which in my mind I think of as the height of summer, and Karl is feeling good. He made it through his last round of chemo and he found it much easier because there was no urgency to get going and leave the house. He could pretty much make his own schedule and that helped. He still got REALLY tired and depressed feeling, but at least there wasn’t the added stress to perform. Every month it hits him with these really low feelings and I have to remind him that it is the medicine and he’ll get over it. What a fight his body is having and it is terrific to see the recovery. He is in that week right before he starts the chemo again and that is when he feels his best.
He actually misses school and his friends and often is bored. He has been reading a lot, playing computer games, working on his Warhammer 40,000 models, swimming and playing with friends when he can find them.
He has another MRI this Friday July 15 at 8:30, so please think of him then. He will have a doctor check up and start the chemo again. They have started a creative art progam at the hospital clinic for the summer and what a nice distraction for all the kids. Karl will work on designing a T-shirt this next visit. Waiting is one of the hardest things for kids to do. Karl really hates to waste any time and its wonderful to have this program.
Thanks for your support and prayers.
Love, Kathy
Wednesday, June 15, 2005 8:01 PM EST
Karl and his class put on a great Romeo and Juliet play last week and Karl made a terrific Lord Capulet. He was one of two people in the class to win the “William Shakespeare Sword Award” and he got to take home one of the swords. He and Chink practiced his part together and Chink was a really good drama coach. Karl put lots of feeling into his words and came home feeling like an actor. He just couldn’t believe after so much work it was over so soon.
They had their graduation ceremony and special pizza lunch last Friday and he was very sad to have it all end. He was honored with one of the 8 “Citizenship” awards and that made him feel good.
He is kind of at loose ends this week. I have told him it takes a while to get used to summer vacation and then he won’t want it to end. We have lined up a camp at the Morehead Planetarium for a week and we hope that will be fun. He has been swimming a lot, playing with friends who are around, reading a lot and playing lots of games.
He has a Dr. Gold check up this Friday and starts the chemo again. Please pray for him.
Thanks for your support
Love, Kathy
Tuesday, June 7, 2005 7:30 PM EST
This is Karl’s last week of school and he has mixed emotions about that. He wants the freedom of summer, but he enjoys school and this will be his last week at Ephesus Elementary. He has been there 6 years. We have had good years there and I will miss it too.
He had a difficult week with the Temodar and was unable to make it to school for the End of Grade tests. He was able to make them up last week, so he’s all caught up and feeling good again. He has been swimming a lot and he told me yesterday he is able to forget his problems while he’s swimming. I’m glad for that.
His class is putting on the Shakespeare play, Romeo and Juliet this week. He is Lord Capulet and has to wear red tights! It is something I never thought I’d be teaching my child. How to put on tights. Pretty funny. He is also the director for 3 of the scenes. Wed. night is parent’s night. It should be fun.
Here it is June and Karl has been on the chemo drug for over a year now. We have been wondering what will happen next. I’m pretty sure Karl will be on the Temodar for at least another 6 months. Dr. Gold would like to keep him on it a while longer. He said he has had kids on it for 2 years. It depends on how the body is handling the drug—if his counts remain good or not. We’ll just take it a day at a time and be thankful for that. We humans love to make plans. It is hard work keeping your mind in the moment.
Thank you for your support. Karl is feeling good this week and I’m glad he’ll get to enjoy the play and the end of the year festivities.
Love, Kathy
Monday, May 23, 2005 11:00 AM EST
Karl’s check up and MRI on Fri May 20 went smoothly and the tumor is still stable! We were most glad to hear that. His blood counts remain good and he has felt really good this past week. It is so wonderful to see him bouncing around and enjoying life. He started the chemo Sunday night, so pray that it does its job and that he doesn’t get too tired.
The 3rd, 4th, and 5th graders at his school all have End of Grade tests this Tues, Wed and Thurs and we’re hoping Karl feels good enough to take them. It is very poor timing to have them in the same week he takes the Temodar. We delayed giving it to him by 2 days to try to delay the fatigue he always feels after being on it for a while. (And it is OK to do this.) The school is most willing to work with us however we needed to about Karl taking them later, but Karl wants to take them with everyone else. Knowing him, he will. He has a pretty strong drive and his hospital doctors and nurses are amazed at how much he continues to do.
I got a call last week from Steve Scroggs to let us know Karl’s transfer to Phillips Middle School went through. Karl is very pleased about this and now we just have to register.
Karl and his friend Peter Lucier went to see the new Star Wars movie on Sat afternoon and enjoyed it. We have discovered that they can go to the movie by themselves. We just drop them off at the theatre closest to us and we feel it is safe. Great fun for them to go alone. What an adventure. And he also got to go swimming at Stoneridge yesterday. Too cold for me, but he LOVES to swim and he said it felt great.
Thank you for your continued support and prayers.
Love, Kathy
Friday, May 6, 2005 7:57 PM EST
Karl made it through another round of chemotherapy medicine and even though it has been a full week since he stopped, he is still feeling the affects. This is the third month that he has taken the increased dose and it makes him extra tired and really down at times. We can slowly see him starting to feel better. He sure is a strong boy.
Last Wed. when he had just finished up the medicine, he went to school and participated in his PE class which he loves. Coach had them all up on the field running a timed ½ mile for a fitness test. I think they do it near the beginning of the school year and then again near the end. Karl ran his heart out even though his body was tired from the medicine and just getting over a bad cold. They went back to class and started in on some math worksheets. Karl was feeling strange and called me to say he felt bad. He said his double vision was acting haywire and he was having trouble focusing on the small numbers on the page. I of course got worried and corresponded with Dr. Gold by email and he said because it was just his double vision it was the chemotherapy and that Karl should take it easy in PE. I guess the muscles controlling his eyes were just as tired as the rest of him. He came home and rested and his eyes got back to “normal”.
This is an exciting time in the lives of all fifth graders. They have all gone on trips to visit the middle school and have signed up for classes. The thought of getting to choose some of their classes is really exciting for Karl. Our stumbling block is that 2 years ago our little section of the Chapel Hill school district was redistricted and the middle school kids are suppose to go to the new Smith Middle School instead of Phillips Middle School where the majority of Karl’s friends are going. We have turned in a transfer request for Karl to go to Phillips with the reason being he needs his friend’s support through his treatments. During all of this time Karl has asked for two major things. One was to go to Disney World and Mom and I took him there, and the other was to go to Phillips. We won’t hear if he got the transfer until this summer, but I’m feeling pretty confident he’ll get it.
The major thing going on in Karl’s class for now and until the end of school is a Shakespeare play. Every year Mr. Z’ s class puts on one and this year it is Romeo and Juliet. He is going to play Lord Capulet, direct some of the scenes and be part of the singing. It is a great way to end the year and I have a feeling it will get him to school when he really doesn’t feel like it.
His next MRI is May 20, so mark your calendar and pray for him. Thank you for your continued support.
Love, Kathy
Tuesday, April 19, 2005 2:16 PM EST
Karl and I went to the Orange County Animal Shelter this past week and found a little dog for my mom. We had been looking and there he was. See the photos. A Lhasa Apsa-Poo, 2-3 year old male. Karl and Mom have named him Little Bear. He is so furry and matted its hard to really see the dog under all the fur. Mom has an appointment to have him
groomed tomorrow and I’m sure he’ll feel better after that. He must have been neglected for quite a while because he is so matted. Mom is having some trouble getting used to having the constant responsibility. You forget when you haven’t had a dog for a while what it is like. We’re also training him and trying him out in different situations. Our little dog Rusty tolerates him OK. He does seem relieved when we get in the car without him and come home. Three cats is enough to keep track of. Karl just absolutely loves him. He loves to sit in your lap.
Karl was in a play about John Hancock with some of his classmates last Friday. In the above photo he was Thomas Jefferson and he read part of the Declaration of Independence. He did a great job. Looks like we have another actor in the family—his cousin Analise is a theater major at Smith College.
Today Karl is home with a bad cold. I told him your forget between colds how bad you can feel. He agreed. He sees Dr. Gold again on Friday and starts the Temodar again. Please send him healing thoughts and prayers.
Thanks for your support. Love,
Kathy
Tuesday, April 5, 2005 9:57 AM EDT
Sunday night.
The thing about selling plants at the nursery, is that we get to experience Spring first hand. Customers come out and soak up the calming affect of our land and I think they take home more with them than just plants. Some don’t buy a thing and just wander around enjoying the place. Good for them, bad for business.
Tonight I feel as though Spring has blown through me today. Yesterday started out raining and that blew on by and we had sun, clouds, sun , clouds and then a cold rain at the end of the day. Today was so nice and sunny, but windy. The nursery is in a wide open place that catches the wind and makes you tired. The first leaves have appeared this weekend and the redbud are in full bloom. Life continues.
Karl had a relaxing week home on spring break and handled the Temodar really well. It helped that he could sleep in and eat breakfast on his own time.
He and I started a Board Game Club. He loves to play board games—something he inherited from the Hoeflinger side of the family. We invited 10 of his friends to come play and it worked out pretty well. Some had trouble sitting for long. Karl says he has learned to sit and be still from this year of tests and hospital visits. I think he’s just growing up too. We had the club meeting last Tuesday and the beautiful day found us all down at the pond and horse barn for the last hour. A great place for kids to blow off steam.
I forgot to mention that Karl was the top reader at his school in a reading competition. The PTA ran a reading competition to raise money and the kids had to keep track of how many hours they read in a 2 week period. Karl read 69 hours! Hats off to Karl.
He is back in school this week and feeling good. Thanks for your continued prayers and support.
Love, Kathy
Monday, March 28, 2005 8:38 AM EST
Karl had his 7th MRI on Friday and thankfully the results were good. The tumor is still stable.
We both are more familiar with the procedure by now and it is good to know what Karl has to do, but it is still stressful and tiring. Karl says it really doesn’t bother him any more. He has become a veteran to needle IV sticks and he knows all he has to do is lie still during the MRI, but he wasn’t able to eat any breakfast before hand and that is understandable. I sit in the same room with him with ear plugs in my ears because the machine is very noisy, so I am able to watch him. He has learned he can move his feet back and forth a little bit and he can open and close his hands. He just needs to keep his head completely still. This hand and foot movement helps. Before he got into these tests he always had a hard time keeping still. I remember in Kindergarten his teacher told us he used to get up and walk around when he wasn’t “suppose to”. As time goes by Karl has learned to work within the system. Last year he would get up to help someone else with some school work letting him move around. This year they seem to be able to move around the classroom a lot working on independent projects. It is much healthier to move.
Afterwards we both were able to relax a little and eat some food in the hospital snack bar. They have these wonderful metal moving sculptures in the lobby and second floor eating area that are fun to watch. Small hard rubber balls travel through a maze of contraptions—sort of like the game Mouse Trap, but better and with electricity helping it along. Karl loves to sit near the one on the second floor and loose himself. Very creative engineering.
We had a nice Easter weekend and were glad for plants sales and egg hunts to have the rain hold off. We gave Karl a tent to play in and maybe use this summer for sleep overs. We decided to set it up on the trampoline since Karl can’t use it right now. Our great nurse Kristi Geib once again explained to us about injuries. They don’t want him doing anything that could cause an injury because his blood counts could be low and the part that controls clotting might not be working correctly. So far he hasn’t had any problems with this, but they want to be careful. He is out of school all this week. He started the Temodar on Friday, so this will be nice for him to be able to sleep in and rest without having to worry about getting to school. His blood counts were good and they wanted him to repeat the slightly increased dose we gave him last time. It is a juggling act. Give him as much as his body can handle without dropping his counts too low.
Please keep sending him healing prayers and thoughts. We all appreciate your support.
Love, Kathy
Monday, March 14, 2005 9:00 AM EST
Spring is on the way and our tiger twin cat/kittens are discovering new animal life outdoors. We have a cat window that allows them to come and go at will, and this has good and bad sides to it. We don’t have to constantly let them in or out, but it also means that they can bring their catch inside to share. For those of you with cats know that they want to help out with the food providing, but a dead snake at 7 AM doesn’t mix well with my oatmeal. Blue brought us that this morning. He has also brought in a live bird two weeks ago which escaped when I grabbed the back of his neck. It flew all over our bedroom before I could catch it and let it go outside. Purple seems to go for the voles and mice and as a gardener I approve, but she needs to learn to leave them outside!
Karl’s blood counts were really good this past Friday and we were pleased with this because they had increased his Temodar and that can often affect the blood counts. He seems to be fighting off the bad infections that are going around. Last Thursday 14 out of 25 kids in his class were either home sick or went home sick. Karl stayed home on Friday with a sore throat and cough and fortunately fought off the worst of it. He is feeling good today and back in school.
Looks like we’re free and clear of doctor visits until March 25 when Karl has another MRI and Dr. Gold visit. We start to sell plants this weekend at the Carrboro Farmer’s Market and at the nursery, so our lives are extra busy right now.
Please keep praying for him and send good thoughts on the 25th.
Love, Kathy
Thursday, March 3, 2005 9:31 AM EST
A year ago today, March 2, Karl had his first MRI. I am SO thankful for MRIs, UNC doctors, nurses and staff, radiation and Temodar! And prayers. Our lives have changed, but we're all still here and doing pretty well! Karl finished his fifth dose of the Temodar last night and they had increased the dose a little bit. Karl was so tired today he just couldn't make it to school. It makes him very emotional and I had to remind him that it was the medicine and that it has happened before. In a day or two, he'll be back to normal.
So thanks for your support.
Love, Kathy
Thursday, February 24, 2005 4:29 PM EST
Karl had a great birthday and we were lucky with the weather. It was a beautiful, sunny, cool day. We had some of his friends over for a party and they enjoyed themselves. We had a great hike to New Hope Creek and then we all went to my mom’s house for cake, ice cream and they played Balderdash. Lots of laughter. His friends mean a lot to him and definitely help with the healing.
One of the presents we gave Karl was a golf putter. His teacher, Mr. Z, is really into golf and has putters in the classroom to use with some math games. I thought golf might be a sport that Karl would find enjoyable, so we’ll see. I want to arrange for him to take a lesson or two and see if he’d like to play further. My Dad used to love to play every Thursday afternoon on his day off with the same three friends. Chink’s mother played in college and then both his parents played later in life. Neither Chink or I play, but one thing I’ve learned from being around Karl is that even though we have our similarities, we also definitely have our differences. Maybe it is in his blood and skipped a generation.
We go see Dr. Gold tomorrow and Karl will start on the chemo tomorrow afternoon. Please pray that it does its job and that Karl handles it well. Thanks for all of your support, friends.
Love, Kathy
Monday, February 14, 2005 8:01 AM EST
Karl’s 11th birthday is this Saturday, the 19th of February, and what a wonderful thing to be celebrating! We have had quite a year.
Karl did pretty well on the last chemo round. He felt pretty tired and stayed home from school one day and rested up and that seemed to do the trick. His weekly antibiotics are rough on his stomach, but if it keeps him from getting really sick, we’re all for it.
He had a very lengthy eye exam last Tuesday with Dr. David Wallace at UNC. He is a terrific ophthalmologist and the one who sent Karl for his first MRI a year ago. Because his left eye is out of line and he sees double in some areas of his vision, they do all sort of tests using prisms. I’m not real clear about it all, but they hold the prisms up until Karl sees one image instead of two. And by doing this they can measure how he is seeing and his range of motion. The eye crossing has gotten better and we have all noticed this. It was great to hear it from Dr. Wallace. He talked to Karl about how he was doing with the double vision and Karl told him it usually didn’t bother him unless someone, like his mom, asked him how it was going. Dr. Wallace said that children’s brains were able to adapt and actually change the image to one. Adults can’t do this. The exam was long because after we had been there an hour, they dilated his pupils, and as most of you know, that takes more waiting. We were there 2 ½ hours! A pretty long day since we went after school.
Karl is feeling great and enjoying life. Thanks for your continued support.
Love, Kathy
Monday, January 31, 2005 7:23 PM EST
The MRI news is: The tumor is still stable! and his counts are good. So, good news all around. Dr. Gold is very pleased. He started the Temodar again this past Friday, so pray that it works and that he handles it well.
Here is a bit of our day last Friday. I think your prayers work best if you can kind of feel what we’re going through.
I started my day early with 4:30 prayers under the covers. Of course I'm praying for Karl and Alex Herrold my cousin Ann's son who was in a bad automobile accident on Jan. 16 in Michigan. (Please pray for him too). I was also praying for myself that I could handle the hospital trip well. The driving, the parking and the many interactions we would have in the hospital. We all know that the hospital can try your patience and in talking to Karl later that was one thing he said he's learning to deal with. I prayed specifically that if some one was there and needed to be seen before us who was in more need at the time I would just relax and let it go. Our schedule after we have found that prize of a parking place is to go to the pediatric floor at 8:00 and have Karl's blood work done and an IV put in for the contrasts they use midway during the 8:30 MRI. We made it on time and as you can imagine I'm pretty geared up with this "deadline" looming. As it turns out there was a little baby girl who needed to go before Karl because she was sick. I caught myself and took a deep breath and told Karl it was OK and we went to find a place to sit and relax. It was out of our hands and I told him about my prayer for patience. He heard that she had a fever and we both knew she needed to go first. We got that step done then we had to go over to the main hospital for the MRI and we got there right at 8:30. Well, they told me they didn't have Karls name down. She checked and found out they had scheduled him for the MRI machine at the Ambulatory Care building, which is a whole seperate building behind the hospital with its own parking! Couldn't you just see us getting there with Karl's IV and all. Well, they were nice enough to work us in! From then on, it all went smoothly and I felt pretty relaxed. We then went back to the clinic to see Dr. Gold. Karl got to play a Game Cube Game with some other kids and he felt very comforted to be there with other kids who have medical problems too. For the most part he wants to be just a normal kid and forget about his condition and all his friends are good at doing that, but he said it is good for him to see that he's not the only one.
So, thanks for your prayers and support. Blue is giving me a lap purr right now and that feels good.
Love, Kathy
Thursday, January 20, 2005 12:25 AM EST
Jan. 11, 2005 Karl made it through this last chemo without throwing up!!!, which was great. He was really tired the two days after, so he stayed home from school and lay on the couch and read. We are all thankful he loves to read so much. I had to explain to him that he’s tired because his body is working so hard and he needs to rest. He is lucky to be so into the imaginary world that he can slip into it so easily and escape.
Our exciting news is that Karl, Mom and I are flying to Disney World today and coming home Sunday! We all feel Karl deserves a trip and Mom wants to take him and Disney is one place he’d really like to go to. No roller coaster type rides, so I’ve come up with a pretty good list of what we can do. I told Karl next time we go to Disney maybe he can ride the fast rides. Chink will stay home and take care of the animals and nursery. Disney is not his type of vacation.
So, please keep praying for healing. More news after our trip.
Love, Kathy
I wrote the above entry thinking I’d have time to update the web site, but didn’t. We had a great time on our trip and even though Karl was bothered about not riding the fast rides, we found plenty of good fun things to do. I’ve included some photos. Karl was able to take part in a computer game where he designed a robot and then he competed against 11 other people in a race with all sorts of obstacles. He was standing on a pad that allowed him to be the movements of his robot. He ran in place or jumped or ran to the side and his robot would do the same. He came in 4th place! and had lots of fun. He then put together a plastic robot out of parts they supplied and was able to take that home.
We went to the Magic Kingdom, Epcot, MGN and Animal Kingdom on a 4 day Park Hopper ticket and boy that made us tired. There is so much to see we’ll definitely have to go back.
While we were away Chink was taking care of our 30 year old horse, Mia. He has done this before when Mom and I have both gone off together, but this time she got out of the fenced in area and he found her walking up Whitfield Rd. when he went out to get our mail. He had quite an adventure catching her. He has fortunately made friends with her by feeding her sunflower seeds as he fills our barn bird feeders. He had never even put a halter on her before until last week I showed him how so he could tie her up. Talk about a crash course in horse catching.
Karl is hospital/doctor visit free until Friday Jan. 28 he has another MRI and Dr. Gold visit. Please keep praying for him.
Love, Kathy
Thursday, December 30, 2004 12:08 AM EST
We have had a wonderful Christmas and Karl had a blast opening gifts and handing them out to the rest of us. He was SO excited and we had a whole week off from school before hand, so there was a lot of time to think about it. His treatments and doctor visits fell at good times so he was feeling good and didn’t have to go to the hospital until yesterday which was the Wed. after Christmas. It is all a magical time of year and we were all able to live in a bubble of magic and faith, and it actually seemed pretty normal. Karl is excellent at blocking it all out. I have to work at it a lot more.
Karl, my Mom and I all drove to Charlotte the day after Christmas to visit my 2 brothers and their families. Karl had a great time playing with his different cousins. He was feeling good, eating well and totally enjoying himself.
His blood counts are low again this week, so when he starts his chemo this afternoon, it will be at the reduced amount. Dr. Gold thought he looked really good and the checkup with him was pretty quick. He clowns around with Karl and makes him laugh.
Afterward, we had to sit and wait for the nurse to draw the blood. The clinic is in these really old, cramped quarters and they have this one little room they use to draw blood. They had a little 5 year old girl in there who was screaming because they couldn’t find the vein and had to stick her about 5 or 6 times to finally get the blood. It was hard on everyone and I spoke to the nurse who was doing the work and I said I don’t know how she does it and she said it is difficult. I was sitting there with my fingers in my ears trying to block it out.
During this time Karl was thinking about Dr. Gold and we’ve all come to realize how hard he works and how many hours he puts in. Karl said, boy he works really hard but it must be a good feeling when he saves somebody’s life. And I’m sure it must be.
Please pray for Karl this week as he takes the chemo. We want it to work, but leave his body quickly and have no side affects.
Chink, Karl and I all wish you a happy New Year and let’s all believe that miracles do happen.
Love, Kathy
Tuesday, December 7, 2004 11:53 AM EST
Holidays are an emotional time of year. Joy and sadness are opposites, but its not hard to experience both at the same time. Last March when we first heard about Karl’s condition I can remember walking into Wal-Mart and just openly crying---yes, Wal-Mart of all places and I didn’t even care who saw me because my grief was so strong. I can remember how the land looked before they built the Wal-Mart and we were totally against them building it there and I swore I’d never shop there. Well, it turns out I do shop there and it is a great place to find some deals and it is fun to go and see what you can find. Karl and I both enjoy doing that and I have some good memories of buying him toys there. Last spring I thought ahead to Christmas and wondered what the future would bring. When I picture the year in my mind I see circular path that moves in a counter-clockwise direction and major events kind of pop up. Last March I could see December way around the bend and I wondered would it be joyful? Would we be shopping for gifts and toys?
It is now December and we are filled with joy and we are shopping for toys, but we are also feeling sad for what is lost and for what can never be the same. Karl asked me what will happen after he finishes the medicine (in June) and I told him I really don’t know. He said I guess I’ll have to keep having MRIs and I said yes, you probably will. He wishes he could be 7 years old again and not have a worry in the world. I told him that there are times when I totally forget about it and then when we say prayers at night and ask for his head to be filled with healing green light, it all comes back to me. He said he can never forget because of his double vision. And then I said, yeah, but there are times when you’re playing a game or playing with a friend or reading a book that you can get away from it and he agreed. He is more emotional while he is taking the chemo, which he just finished this past Sunday. I don’t know why. My brother Clark has three kids, two of which are 12 and almost 14 years old and he tells me this is an emotional age. Karl gets an added bonus.
He had his 5th MRI last Tuesday, and the tumor area is still stable. This is good news. I get pretty worked up about the whole thing. Wondering what they will tell us. His white blood count was low, so he took a lower dose of the chemo. It knocks the counts down and they don’t want him going too low because it opens him up to catch an infection. He stayed home from school yesterday to rest up. We have discovered the feels the worst 1 or 2 days after he finishes the chemo. He went in to school an hour late today because his stomach was still jumpy. He felt funny going in late and I told him if it was one of your friends, wouldn’t you be glad that they came in even if it was late? I was in the room when his class came back from music and I heard one say, oh good, you came in. So, his good friends once again will be some powerful medicine.
Thank you all for your support. During the MRI I was sitting in the same room with Karl during the procedure and I was meditating and sending him healing energy and I had this vision. It was a shimmering silver light hovering over Karl and I knew it was God and all of you sending your support. I felt peace. I was telling Karl about this later and he told me during the MRI he felt himself rise up above his body and sit up and that he had felt that before when he was trying to go to sleep. I told him that there aren’t many 10 year olds who have experienced that. Keep the energy and prayers coming. They are bringing us joy.
Love, Kathy
Thursday, November 11, 2004 7:13 PM EST
Karl was back in school yesterday after staying home Monday and Tuesday. He finished his chemo Sunday night and Monday morning I was thinking to myself, hey he's done really well this round and as he was in brushing his teeth he threw up. This happened last month too and it was a Monday also and now we're thinking that maybe we should just plan on him staying home the day after he finishes his medicine and let him rest. He does better if he can just sit and read, watch TV or compute and then eat late and only when he feels like it. As the mother sending him off to school, I feel like he should have something to eat before he goes out the door, and this just doesn't work with his jumpy stomach. He said on Monday its a good thing he likes to sit around and do those things because he knows some boys don't like to do that. He stayed home both days and was just totally wiped out. When we look back on the past 10 days he had good reason to be tired. He had been sick with a cold, the dreaded time change (It is very much disliked in this do-it-by-the-clock family. Even our animals look at their watches and wonder what has happened), Halloween, chemo and then Karl was in the mile long Ephesus Road Runner Rally at his school last Friday. Wednesday morning he woke up with that old sparkle in his eye and after school he was running around the playground with his friends having a good ole time. He is off from school today for Veterans Day and he is going to use it getting caught up on his missed school work and try to be on the computer as much as I'll let him.
The Road Runner Rally was a big success thanks to a lot of volunteers and three teachers who are good at organizing and working with kids. Mr. Walker, a fifth grade teacher is the driving force behind it. He is a runner himself and very dedicated to making this race work. He was even out the morning of the race raking the nature trail which was part of the course. Mrs. Strickland, the art teacher, had everything color coordinated by grade and class, and had the check-in and out running smoothly. The race is limited to fourth and fifth grades and was divided into boys and girls, so there were four races. And then of course Coach Perrault, the P.E. teacher known to everyone as "Coach", kept the kids organized and started each race. He has taught most of these kids for years and definitely commands their attention. I was there as a volunteer and I had the job of keeping an eye on the fifth grade boys while they had to wait an hour until it was there turn to race. That is a long time to sit and wait and I think they used up more energy before the race kicking the metal bleachers and cheering the kids on who were racing. It was all in good fun, but boy were they loud! At the end of all the races, Mr. Walker handed out ribbons to every child for participating. 1st, 2nd and 3rd places were not recognized like in most races. We all knew who they were and we were impressed by them, but we were just as impressed by all of the other kids. Karl finished the race and was toward the end of the pack, but he felt good about it and is glad he did it. I think the teachers handled it well and I would recommend it to kids next year. Karl could barely move the next morning and I think we all know that feeling.
We are continuing our Chi Gung with Joe Manning-Gray and today Karl and I are going to start some Tai Chi. It will be nice that it is an afternoon when he hasn't been in school all day and maybe able to enjoy it more.
Thanks for you thoughts and prayers. Love, Kathy
Thursday, November 4, 2004 8:18 AM EST
Wed. 11/3/04 Karl went for his monthly doctor visit yesterday and everything checked out OK. We got in and out of the clinic in an hour which we thought was pretty good. The hardest part was finding a place to park in the parking deck maze. His blood work numbers were normal, which is good. This means he can take the full dose of chemo which he starts tonight. He caught a cold last week and stayed home from school last week on Thursday and Friday, but he started feeling better over the weekend.
We went to a fall carnival at his school on Saturday. Karl and his friends cruised the school, played games, ate pizza and had fun. Mom and I both helped out. I ran a football toss booth and Mom got the bingo games off and running. Karl said on the way home that he guessed the carnival was a fund raiser and they just didn’t want us to know it. We were just suppose to go and have fun. Its funny how the adult world creeps up on them gradually.
Sunday night Karl, Chink, Rusty and I all went over and met up with 4 of Karl’s friends and parents and went trick-or-treating in the neighborhood near school. Karl was a wizard and is very proud of the fact he got 5 pounds of candy! We walked for 2 hours. That along with the time change made us all very tired, but the weather was beautiful and warm.
Chink and I went to a teacher conference on Monday. Mr. Z included Karl and talked to him about what Karl thought he had improved on and what he needed to work on. Karl thought his writing had improved and that he needed to be more careful in his math work. We also got his report card and Karl got all A’s and had only missed 6 days. Pretty good with all that he’s having to deal with.
Yesterday was a beautiful day and Karl was home because of a teacher workday. We had his friend Patrick Conway over to play. The three of us had a great hike down to the New Hope Creek. Patrick had never walked in Duke Forest before and it has been a while since I’ve walked down to the creek. I try to stay out of the woods during tick season and it seems lately we’ve had something else we needed to do. The boys had great fun climbing on the rocks and trying not to fall in the water and making big splashes with big rocks. Karl and Patrick talked almost the whole time when the creek wasn’t capturing their attention. They both have great imaginations and are creating a comic book. It made for a pleasant walk with no complaining.
He starts his Temodar tonight, so please pray that his body handles it well, that it does its job and that the tumor and medicine are flushed from his body.
Thank you for your continued support.
Love, Kathy
Tuesday, October 26, 2004 6:56 PM EST
Weeds. I’ve always wondered about their purpose and this morning while I was weeding at the nursery I finally figured it out. Weeds are something you can count on. You know that some weeds will always be around and if you do get rid of them, they always return. And while you’re trying to get rid of them you are given the opportunity to think. During my thinking time this morning I realized what a nice break we’re getting from driving to the hospital. We get a three week break because I scheduled Karl’s last blood check visit too soon after his last chemo treatment, so the numbers didn’t really tell them anything. Our schedule is that Karl gets his blood checked every two weeks and we see Dr. Gold every month and start the chemo after that visit. The schedule got thrown off because we had to wait on the pharmacy to order a different dose of the Temodar. Now I know that the blood gets checked two weeks after he starts the chemo. We’ve had to learn more than we wanted to know about blood and medicine and the UNC staff have been most kind and patient trying to explain it to me. My weeding thoughts then moved on to think that I wish the staff had explained this to me before since it’s a lot of work getting Karl to the hospital for this blood check when he’s already had a full day at school. I then I went on to think that they probably did explain this to us during one of those first meetings when we were still in shock from the news and really unable to take it all in. I know now how important it is to have some one there to take in the facts when you hear distressing health news. Chink and I were that for Karl, but for us it was just as distressing.
Karl had a three day weekend because of a teacher workday and this Monday morning he was complaining that it wasn't long enough. He is feeling good and had fun on Fri and Sat playing with friends and then yesterday we stayed close to home and cleaned up the house and he caught up on some school work. Last week I took him to a new pediatrician at Chapel Hill Pediatrics and they gave him a flu shot. UNC Hospitals hasn't gotten any yet and couldn't promise that they would, so I got him in to a practice that had some. They had ordered before the shortage. Dr. Christian is the doctor who examined Karl and he and Dr. Gold know each other, so that is a good connection. I doubt we'll see him much since we go to UNC every 2 weeks, but its a good feeling to have some backup in case we need it. The nurse that checked his weight and such turned out to be the nurse he had at Kaiser when he was a baby. I took his vaccination record in and she was the one who had given him most of them. We hadn't seen her in 9 years. That was a nice connection for me. Of course Karl didn't remember her. We had a very good experience with Kaiser and were sorry when the pulled out of this area. Kind of felt like they left us high and dry.
Karl's class starts a new project today called "High Seas Adventure" and it will be interesting to see what work that will involve. The last major project (that's how this teacher works) was called Adopt-A-State and we learned a lot about Arizona and the fact that Mr. Z expects them to do most of the work independently. Karl kept waiting for the teacher to say, "OK we're going to work on this part of the project today", but he didn't, so the week before it was due WE were really working to get it done. I can't say it was procrastination because Karl really believed that they were going to do the work in class, but what they really were doing was being given the TIME to work on it in class, but they had to be the motivation behind it. A BIG difference from years past when the teacher would tell them exactly what and when to do it. Hopefully on this next project he will work all along on it and it won't be such a struggle the last days. Mr. Z gives them and sends home a calendar so we all know when things are due and he actually sticks to it. Chink is amazed at that. So, we'll see matey what will happen.
Mom went to the mountains last week and brought home organic cooking apples, so she and I have been peeling and slicing like mad. I've been searching for low sugar recipes for Karl since I try to keep his sugar intake as low as possible. It is a challenge.
I hope your week goes well. Please continue praying for Karl.
Love, Kathy
Tuesday, October 12, 2004 9:15 AM CDT
Mon AM:
Karl has made it through another round of chemotherapy! His stomach this morning was a little touch and go, and he didn't eat much before he headed off to school, but at least he kept it all down this time thanks to the chocolate pudding cover-up. I had to add to the fire this morning by starting him on his weekly round of antibiotics and that is also rough on his stomach, but I had to do it. I just have to be just mentally tough about it and give it to him even tho I know its hard on him. It was tempting to let him sit out the morning at home, but I thought it would do him good to get to school and get his mind off all this. Its sort of like when you have a cold and your nose is all plugged up and it does you good to walk out into the cool outside air and it loosens things up. Mentally he enjoys a challenge and fortunately he's getting that this year.
Karl had a busy weekend with a high energy birthday party sleepover Sat night with 11 other boys! He was so excited and it was hard for us not to worry about him since he was on the chemo, but he did fine and the crowd actually got some sleep. He was with a family we know pretty well and I felt most comfortable with them taking care of Karl if he needed help. I'm trying to learn to ask for and accept help--it is hard for me. He was pretty tired on Sun and lay around on the couch the rest of the morning, and then wanted to go on to a Cub Scout meeting in the afternoon. Chink took him to that and watched while they played basketball and football. They were working on a Sportsman badge. These two sports are not what Karl excels at, but he is trying. For weeks now he has come home and said that the rest of the boys in his class played football during recess and he just watched. Neither Chink nor I are team sports players and we didn't even own a football. Karl came home last week and said he had played football that day and he wanted to learn to catch and throw a football. I bought a cheap football at Wal-Mart and he and Chink have started practicing in the driveway. Chink knows more than I realized. He must have gone through this same thing of having to learn how to play. I really admire Karl for trying to learn. I can't imagine trying to catch a ball when seeing double, but Karl says when he concentrates on an object it isn't double, but it must be more difficult. He went to play with his friend Max Sloan last Fri and I had asked his mom to ask Max to help Karl with football. Max is a real sportsman and he plays on a city team. He and Karl worked on it and Max taught Karl some things his dad had taught him. Max is a great kid. He wanted to help Karl and didn't make fun of him.
Tues. AM: Here it is Tues morning and Karl's stomach insisted on a slow morning with his Blue cat sitting on his lap. That is good medicine. Cat purring. A nice warm rumble. So, no school today, but Karl has a big project he's working on for school called Adopt-A-State and he is doing his report on Arizona. Lots of research and maps and they put it altogether on a poster. He can work on that today and rest up.
Other than his stomach, he is feeling good and we are all very thankful for this. Thanks for your continued support and prayers.
Love, Kathy
Saturday, October 2, 2004 9:15 AM EST
We had a very long morning at UNC hospital yesterday, but we were given good news. The MRI showed that the tumor is still stable! We were given just a quick report because they hadn't had time to really study it, but Dr. Gold (Pediatric Oncologist) wanted us to have the news as soon as possible. Dr. Gold is a terrific doctor and Karl feels so comfortable with him. He goofs around just enough with Karl to make him laugh and as we all know laughter is the best medicine.
We also saw Dr. Morris (Radiation Oncologist) and he is feeling very positive about Karl's tumor. He is a terrific doctor too. Very detailed and thorough. He was in charge of Karl's radiation treatment last spring and he explained that we shouldn't expect the tumor tissue to disappear. I told him that was what I was praying for and he said if it did that would be wonderful, but he wanted us to realize that the old tumor tissue can act like scar tissue and since they can't operate and remove it, it might just stay. The goal is to keep it stable and not start growing. In June Karl had an MRI that showed it stable, so 4 months is pretty good. I asked him if there was a way to find out if the cells were living and he said that every time Karl has an MRI they do a study to see if there is activity. Half way through they inject a dye through the IV that is in Karl's arm and I imagine this shows a contrast on the MRI image. I guess time will tell on this.
Karl will continue with the chemo drug, Temodar. He starts his next round this Wednesday. Hopefully, he will be able to handle it well. He continues to take the antibiotic 3 days out of every week and we've learned a new way for him to take the awful tasting pills. I had been giving it to him with other pills in a spoonful of applesauce that makes it easier to swallow. He was able to taste the antibiotic and the Temodar in the applesauce and we're thinking that this might be the reason that he sometimes throws it up. Our friend Pat Kiley (she is also on Oncology Nurse at UNC) suggested chocolate pudding. She thought the chocolate flavor would be strong enough to cover up the medicine and she was right! The pills have been going down easier and we'll give it a test this week with the Temodar. It is a strange feeling as a parent, giving him this awful medicine that could make him throw up, but could also save his life. What a choice!
Karl and I both have had colds this week and he's had to miss some school because of that, but he has continued to do his school work at home, so hopefully he'll be able to keep up. Karl says of course he will. He is a very positive and determined kid and I really admire him. He was very restless yesterday and the waiting is always the hardest part. He has grown up a lot through all of this. I remember saying to my mom when we first heard about Karl's brain tumor that this was the end of his childhood. I was wrong. It was the end of the childhood that I had envisioned, but he is still definately a kid and always makes the best of a situation. Of course he's gotten me to buy a few Game Boy games and they help him pass the time, but I feel like he deserves it. During Friday's visit, he complained very little and was really pleasant for me to be with. We had fun buying a snack at the hospital snack bar and that broke up the morning. He goes about this seeming to know it is best for him. One of the nurses mentioned the "Make a Wish Foundation" and Karl wants me to look into it. Our friend Blythe had already mentioned it to me, but I just haven't had time to look into it. She had just been to Disney World with her 8 year old and that sounded fun to Karl.
Well, thanks again for your support and prayers. Please pray for total restoration, that the tumor will disappear and not reappear and that he handles the medicine well this week.
Love, Kathy
Wednesday, September 22, 2004 6:31 PM CDT
We went to the hospital today for Karl's every-two-week nurse visit for blood work. His counts are really good, so that means his immune system will help him stay healthy and in school. We're all most pleased about that. He is feeling really good and continues to enjoy school. His class has started running to Alaska. Maybe he can wave to his Aunt Jules and Willy as he runs by. I think the class exercise is a great idea. They ran to Scotland in second grade with his teacher from Scotland.
Karl, my mom and I have started taking Chi Gung classes. This is the energy gathering beginning part of Tai Chi which was my original idea. We had such a great time swimming this summer. Karl got healthier each week as summer progressed and I know the exercise helped. The radiation, steroids and chemo really took a lot out of him. I was trying to think of something fun Karl could do for exercise this fall and winter while the pool is closed and thought of Tai Chi. Karl has continued to use the pressure points he learned from Ken Morehead our acupuncturist and we asked him about Tai Chi. He recommended Joe Manning-Gray and we started last week. We are slowly learning the moves and Karl has taken to it like a duck to water. Chi Gung is about absorbing energy and directing it where your body needs it. Joe thought this would be a good place for Karl to start. We imagine healing green energy entering our bodies. Karl is really good at this. He has such a good imagination. Mom and I are working on it. There are advantages to being 10 years old and totally receptive. Karl and I have been praying for healing green light since March, so this fits nicely. Joe says he imagines red light. Karl plans to use that when he needs energy. We do this routine right before bedtime and it has helped him go to sleep. I see it as a form of meditation that Karl can connect with.
Our next big hospital date is October 1. MRI and doctor visits. Please keep praying and think of Karl next Friday morning. We all thank you for your support.
Kathy
P.S. I'd really love to hear from you and if you'd rather not leave your note on this web site, please click on our email address and send it to us that way. It does me a lot of good to get mail.
Tuesday, September 14, 2004 7:41 AM CDT
Well, Karl made it through another chemo treatment! Last Wednesday he went in for his monthly doctor checkup and they were very pleased by how he looks and his blood counts were really good. So, that was good news. He started the chemo that night and handled it all very well. He stayed in school and even went on a cub scout outing on Sunday to play lazer tag in Raleigh. Our only bad event was he threw up his final dose on Sunday night and then stayed home yesterday from school. Was it a virus or the chemo we'll never know. He also has to take an antibiotic 3 days out of every week (it is to hopefully prevent an incurable pneumonia) and this also upsets his stomach. I have been hiding the pills in ice cream and this has helped some, but it is amazing how much a connection there is between your mind and your stomach. He has gone off to school today feeling good.
He has a really good teacher this year and has some ongoing projects, so he is able to work on those on the days he stays home. One of them is to collect 30 editorial cartoons for each nine weeks and explain half of them. Karl is learning a lot by reading these because they bring up all sorts of questions. I'm learning a thing or two myself. There are some web sites that offer these which is appealing for Karl because anything to do with the computer is just fine with him.
Our kittens have rapidly turned into cat size creatures, but they still act kittenish. Blue has gotten huge and must weigh twice what Purple weighs. Karl has been reading his "Cat Fancy" magazine and the latest issue has the Pixie-Bob cat as its feature cat. Karl is convinced that our kittens have some of this in them. The males weigh from 12-22 pounds and the females weigh 8-12 pounds. Pretty soon Blue will out weigh our dog Rusty. He is so clumsy he's like a teenager. He makes us all laugh. Laughter is good.
Thanks for all of your support. Keep the prayers coming. Healing, total restoration, let the medicine and supplements do their job and let Karl be able to handle it and stay healthy are all good prayers. Being specific in prayer I've been told helps. Karl and I were talking about imagining the tumor disappearing. I have been picturing it melting and he liked the "Pac Man" idea of it being eaten. Computer game kid!
Kathy
P.S. If you are hearing about this for the first time and need to explain Karl's situation to your kids, please explain it to them the way it was explained to Karl by Dr. Gold. Tell them a brain tumor is a growth in the brain and that it is being treated at UNC Hospitals. It is not contagious, meaning you can't catch it from some one and we don't know why Karl has it. The treatments have not affected his mental abilities and he can still read circles around me. He is still the same, kind and generous Karl. If anything all of this has made him more compassionate toward others.
Tuesday, August 31, 2004 11:43 AM EDT
Tuesday August 31, 2004
Greetings,
This health story began November 2003 when we noticed that Karl's left eye was not tracking correctly. After many visits to the eye doctor and then an MRI on March 2, 2004, it was discovered that Karl has a brain tumor. It is a Diffuse Brain Stem Glioma. He is currently being treated at UNC Hospitals in Chapel Hill with good results. At the beginning of the treatment he had 6 weeks of radiation (every day after school) along with the oral chemotherapy drug Temodar we are able to give him at home. He was also on steroids for 13 weeks which increased his appetite and he gained 16 pounds and had trouble sleeping. He has since lost all of that weight and now it is a struggle to get him to eat sometimes. Starting in June, he will continue with the Temodar 5 days out of every month for a year. He has had 2 other MRIs. The first showed the tumor was stable and the second showed it had been reduced a little bit. The staff at UNC Hospitals is fantastic; caring, knowledgable, and willing to communicate and work with us to make the treatment as comfortable as possible.
He currently is in 5th grade at Ephesus Road Elementary School in Chapel Hill and enjoying it very much. His only symptom continues to be double vision in certain areas. He can read a book fine and can see normally out of the upper part of his vision, so to see at a distance he tilts his head like he's looking down and then looks up without moving his head. He started doing this last November and this was our clue that something was going on.
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