We have started contemplating a trip up to our house in the mountains because Kevin has been doing so well and is relatively stable. It is usually pretty quiet up there this time of year (between summer and winter resort seasons), so it might be a relaxing change of pace for all of us. Plus, it will be an emotional achievement for Kevin to make it back up to the mountains; we used to go up there every winter weekend when we were young, and now he hasn’t been there in almost two years.
The only thing that Kevin is concerned about is sitting in the car for over 4 hours. He has regularly been in the car for 20 minutes each way to and from outpatient therapy, but before yesterday, he hadn’t been in a car for longer than that (besides in a gurney in an ambulance when he was in much worse condition, which is a whole different situation). We suggested we take a car trip longer than 20 minutes and shorter than 4 hours to show him that he was able to sit in the car for a longer period of time. We tried to think of destinations about an hour away. I realized that the In-N-Out in San Jose was the perfect distance. Also, that trip came with a reward of a Double-Double animal style and a chocolate shake! Kevin breezed through the car trip without any problems, enjoyed his lunch, and was perfectly fine on the drive home. His confidence is boosted and he proved that his trunk strength is such that he can sit in the car, even on Highway 17 with all the winding turns, for longer than 20 minutes. We now have a tentative date in a couple weeks to head up to the mountains, and we’re looking forward to the trip.
The steroid taper is continuing to go well; with the rate things are going, we might have him off the steroids sometime in the next couple weeks. It will be the first time since November that he'll be off oral steroids!
There are a few behavioral signs that have shown us Kevin must be feeling better. On one of the warm nights this past week, we had a family dinner outside on the deck. At the start of the evening, Kevin was hesitant about eating outside because he claimed he was tired, but by the end of the meal, he was joking around and telling us stories about high school and college. The song “Roxanne” came on the radio, and Kevin said, “I have two stories about ‘Roxanne.’” He proceeded to tell us both stories while also doing a nice rendition of Sting’s lyrics. The fact that he had enough energy after eating to tell relatively long stories, laugh and sing signifies to us that he must be feeling a bit better. Simultaneously, he has been growing more stubborn and argumentative, which has always been Kevin’s personality. While it drives us up the wall at times, we take it as a sign that he’s improving, because when he was feeling worse, he didn’t have the energy to argue with us. Therefore, the stories and stubbornness remind us of how Kevin acted from age 1 to last November, when he got sick. We’re viewing these behavioral changes as positive signs that his energy, strength and stamina are returning.
Thank you to all of you for your love, thoughts, prayers and support. Kevin has improved a lot over the past few months, but he still has a long way to go and needs just as much support as ever. We are so lucky to have you all as a support network—thank you for doing such an amazing job.
Saturday, August 28, 2010
Tuesday, August 24, 2010
Energy Improvement
Kevin’s energy level has dramatically increased over the last three days. He was exhausted for several days after his large chemotherapy session last week, but his energy is finally bouncing back. With his energy improvement came an attitude improvement as well; he was pretty depressed when he was so tired, but now he has at least few moments of positive attitude during the day. It’s wonderful to hear his laugh bouncing through the house from time to time.
Over the past few days, Kevin has also been working hard at occupational therapy and at home while practicing his exercises. At the moment, he’s sitting up in the wheelchair without much support at all, and he’s sitting up remarkably straight. Besides relearning how to use his muscles and building muscle mass, he has to regain a sense of balance. His senses have gotten so screwed up that he has had a very difficult time telling straight from crooked, or feeling where his center of gravity lies. However, as more time goes by, he’s more able to sense if he’s leaning to one side and what he needs to do in order to straighten up.
We are also plowing along with the steroid taper. We’ve picked up the pace of decreasing the steroids, and so far (knock on wood), Kevin is coping well. We’d like to get him off the steroids as quickly as possible because, at this low level, they probably mess with his emotions more than they’re helping with the swelling. He still has severe mood swings, and can emphatically display five different emotions in under two minutes. The sooner he can return to his normal emotions, the better!
After an extremely wet, cold and foggy June and July, we finally got some warmth at our house. However, now it’s over 100°F (it’s 100 in the shade), so the weather quickly swung from one extreme to the other. We are now headed outside so Kevin can spray the rest of us with the hose. At least it finally feels like summer!
Over the past few days, Kevin has also been working hard at occupational therapy and at home while practicing his exercises. At the moment, he’s sitting up in the wheelchair without much support at all, and he’s sitting up remarkably straight. Besides relearning how to use his muscles and building muscle mass, he has to regain a sense of balance. His senses have gotten so screwed up that he has had a very difficult time telling straight from crooked, or feeling where his center of gravity lies. However, as more time goes by, he’s more able to sense if he’s leaning to one side and what he needs to do in order to straighten up.
We are also plowing along with the steroid taper. We’ve picked up the pace of decreasing the steroids, and so far (knock on wood), Kevin is coping well. We’d like to get him off the steroids as quickly as possible because, at this low level, they probably mess with his emotions more than they’re helping with the swelling. He still has severe mood swings, and can emphatically display five different emotions in under two minutes. The sooner he can return to his normal emotions, the better!
After an extremely wet, cold and foggy June and July, we finally got some warmth at our house. However, now it’s over 100°F (it’s 100 in the shade), so the weather quickly swung from one extreme to the other. We are now headed outside so Kevin can spray the rest of us with the hose. At least it finally feels like summer!
Wednesday, August 18, 2010
Exhaustion and Milkshakes
Yesterday, Kevin received the “big 3” chemotherapy treatments. This only happens every six weeks, so we tend to forget how tired he becomes after receiving all of the medications at once. Furthermore, the chemo appointment this week took 5 hours, so that in itself wore him out (it also wiped out Mom, Dad and Kathlin). However, Kevin’s local oncologist thought Kevin looked good, and he is nudging us to get Kevin off the steroids. Kevin is now on a very low level of steroids. We’ve been tapering him off very slowly, giving his body a chance to take over so the swelling doesn’t suddenly return. With the oncologist’s suggestion, we might increase the speed of the taper, and we might have him off the steroids by Kevin’s next chemotherapy appointment in two weeks.
We’ve decided to do a system of star rankings for the milkshakes that are excluded from the contest for best chocolate shake. Kevin has been drinking a lot of milkshakes from Marianne’s in Santa Cruz, but there’s only so many chocolate milkshakes that one ice cream shop can make. Kevin has started branching out to new flavors. I’m adding a new column, "Shake Stars," to the side of the blog for milkshakes of various flavors (other than chocolate), ranked 1 to 5 stars. So far, he’s given the Oatmeal Raisin Cookie Dough milkshake from Marianne’s a 4. For Kevin’s birthday, Kathlin’s parents gave him a milkshake machine. He’s been flipping through a milkshake cookbook for the past couple of weeks, figuring out what recipes he wants to try. They finally fired up the machine today and made a Bananas Foster shake. I don’t think they flambéed the top of the milkshake, though that would have been quite exciting! He has ranked the homemade Bananas Foster milkshake a 4 as well.
Despite Kevin’s decreased energy level lately, he’s had some great achievements. On Sunday, he stood at our makeshift standing frame for a record total of 28 minutes. He’s also managing to gain some control of his left arm and leg. I’m still amazed that he can move his left arm on command; he couldn’t move it for such a long period of time. Kevin’s hair is also starting to grow back in. It’s very downy and fuzzy at this point, but it’s getting thicker every day. Kevin’s blood work is also much more stable than it used to be. His platelet count is staying at a healthy, normal level, and his potassium and magnesium levels are steady, though on the low end of normal. Another indicator in his blood work now shows that he’s building muscle mass. We’re hoping his energy level grows over the next few days, but even with the little energy he does have, he’s managing to do some things that weren’t possible for him a few weeks ago.
We’ve decided to do a system of star rankings for the milkshakes that are excluded from the contest for best chocolate shake. Kevin has been drinking a lot of milkshakes from Marianne’s in Santa Cruz, but there’s only so many chocolate milkshakes that one ice cream shop can make. Kevin has started branching out to new flavors. I’m adding a new column, "Shake Stars," to the side of the blog for milkshakes of various flavors (other than chocolate), ranked 1 to 5 stars. So far, he’s given the Oatmeal Raisin Cookie Dough milkshake from Marianne’s a 4. For Kevin’s birthday, Kathlin’s parents gave him a milkshake machine. He’s been flipping through a milkshake cookbook for the past couple of weeks, figuring out what recipes he wants to try. They finally fired up the machine today and made a Bananas Foster shake. I don’t think they flambéed the top of the milkshake, though that would have been quite exciting! He has ranked the homemade Bananas Foster milkshake a 4 as well.
Despite Kevin’s decreased energy level lately, he’s had some great achievements. On Sunday, he stood at our makeshift standing frame for a record total of 28 minutes. He’s also managing to gain some control of his left arm and leg. I’m still amazed that he can move his left arm on command; he couldn’t move it for such a long period of time. Kevin’s hair is also starting to grow back in. It’s very downy and fuzzy at this point, but it’s getting thicker every day. Kevin’s blood work is also much more stable than it used to be. His platelet count is staying at a healthy, normal level, and his potassium and magnesium levels are steady, though on the low end of normal. Another indicator in his blood work now shows that he’s building muscle mass. We’re hoping his energy level grows over the next few days, but even with the little energy he does have, he’s managing to do some things that weren’t possible for him a few weeks ago.
Friday, August 13, 2010
Visual Stimulation
Throughout Kevin’s illness, we have remained adamant about decorating the rooms where he spends most his time. In the hospital, we put up pictures of Kevin racing Giant Slalom and jumping off cornices at Kirkwood. The nurses almost always commented on these pictures and were amazed that the helmeted and goggled skier was Kevin. These pictures and conversations made the nurses realize who Kevin is and humanized him as a patient. Mom was extremely diligent about moving the posters and decorations from room to room in the hospital; when Kevin was transferred to the ICU, Mom was frantically taking things off the walls and figuring out how to sneak some pictures into the stricter unit.
Now, the living room where Kevin and Kathlin spend most of their time is covered with the birthday cards (278 total) you all have sent. The main point is no longer to show Kevin’s caretakers who he is—we all know Kevin. We now need to focus on showing Kevin how much support he has out there. So, every inch of wall space in the living room boasts a message of love and encouragement from at least one supporter, and often a whole family of supporters. We are simultaneously (and covertly) using this as an eye exercise. “Hey Kevin, remember that card (pointing to one on the far wall, in the corner so he has to move his eyes and refocus them) from so-and-so? That’s a great one…”
The symptom that Kevin continues to be most bothered by is the “bounciness” of his eyes. The nerves controlling the muscles that direct his eye movement were also affected by the tumor location. There was a time in the hospital when Kevin couldn’t move his eyes at all. At other points, one eye was significantly crossed. Kevin has now regained eye movement, but his control is far from perfect. Plus, spasms in the muscles that control his eyes create a bouncing effect. We encourage him to keep doing his eye exercises, but they are one of the least comfortable exercises for him to do. Unfortunately, this seems like a symptom that isn’t going to get better on its own, so we have to keep hounding him on the exercises. Getting him to read or focus on visual things is another form of exercise for those eye muscles. Kevin gets several magazines that keep his interest, so he exercises his eyes by looking at those. Also, we have just purchased the game “Apples to Apples” as something fun that requires a bit of reading (and has relatively large letters—he can’t read normal, small type just yet). Do any of you have suggestions for activities that involve reading big letters (large type novels are still a bit too much) or focusing his eyes?
Thanks to everyone for your continued support and encouragement!
Now, the living room where Kevin and Kathlin spend most of their time is covered with the birthday cards (278 total) you all have sent. The main point is no longer to show Kevin’s caretakers who he is—we all know Kevin. We now need to focus on showing Kevin how much support he has out there. So, every inch of wall space in the living room boasts a message of love and encouragement from at least one supporter, and often a whole family of supporters. We are simultaneously (and covertly) using this as an eye exercise. “Hey Kevin, remember that card (pointing to one on the far wall, in the corner so he has to move his eyes and refocus them) from so-and-so? That’s a great one…”
The symptom that Kevin continues to be most bothered by is the “bounciness” of his eyes. The nerves controlling the muscles that direct his eye movement were also affected by the tumor location. There was a time in the hospital when Kevin couldn’t move his eyes at all. At other points, one eye was significantly crossed. Kevin has now regained eye movement, but his control is far from perfect. Plus, spasms in the muscles that control his eyes create a bouncing effect. We encourage him to keep doing his eye exercises, but they are one of the least comfortable exercises for him to do. Unfortunately, this seems like a symptom that isn’t going to get better on its own, so we have to keep hounding him on the exercises. Getting him to read or focus on visual things is another form of exercise for those eye muscles. Kevin gets several magazines that keep his interest, so he exercises his eyes by looking at those. Also, we have just purchased the game “Apples to Apples” as something fun that requires a bit of reading (and has relatively large letters—he can’t read normal, small type just yet). Do any of you have suggestions for activities that involve reading big letters (large type novels are still a bit too much) or focusing his eyes?
Thanks to everyone for your continued support and encouragement!
P.S. The number 13 is special to Colgate University. As a result Colgate declares every Friday the 13th "Colgate Day". Happy Colgate Day to all!
Monday, August 9, 2010
The Fight is ON!
This afternoon, Kevin received another MRI to check on the progress of the tumor. When to get another MRI has been a point of contention in our family for the last several weeks. Kevin and Kathlin would like to see an image frequently to reassure them that their hard work isn’t all for naught. However, the rest of us hold that the scan shouldn’t be the deciding factor as to whether Kevin decides to keep working so hard. His immense progress over the past couple of months is excellent proof that his hard work is paying off and that the tumor is most likely shrinking. In our eyes, clinical progress (improvement in his symptoms) is just as reliable a sign as anything the MRI will show.
To cut to the quick, the scan today reaffirmed our suspicions and showed that the tumor has shrunk significantly. Yes, it is still there, and it will take many months, possibly years, for everything in that area to completely reabsorb into the brain stem. However, this is the first scan that has shown significant reversal of the tumors’ growth. At the moment, Bob and Steve are retreating!
Some of you with excellent memories may ask… but what about the last MRI in May, after Kevin had a seizure in the Dominican rehab facility and had to be admitted to the main Dominican Hospital for a few days? That MRI showed growth in the tumor, right?
All of that is correct. Bear with me while I try to explain. Yes, the previous MRI had shown that the affected area of Kevin’s brain stem had grown. However, the “growth” as seen on MRIs after radiation therapy doesn’t necessarily mean the tumor is growing. It could also be the agitation of the tumor, and a sign that the tumor is breaking apart. In fact, the “growth” on those post-radiation MRIs could even mean better long-term success in eliminating the tumor. Go figure. So, growth on the MRI can apparently mean that the tumor is agitated and will break apart in the future, or it could actually mean tumor growth. See why we like to trust his symptoms as better signs of his overall progress? We certainly don’t want Kevin to get discouraged from growth on a MRI scan if that “growth” may mean eventual success.
Whether the growth on the previous MRI was actual tumor growth or a sign of the tumor’s agitation, the pattern of growth has reversed for the first time since November 2009. The growth as seen on the previous MRI has disappeared. Two characteristics have significantly improved; the edema (swelling) and the mass effect (how much the tumor is pushing on other structures in the area). The decrease in edema is especially wonderful, seen as Kevin is on an extremely low dosage of steroids. Therefore, this decrease in swelling simply means that things are getting better; the steroids are no longer helping much to reduce the edema.
Furthermore, the tumor’s mass effect has dramatically improved. The tumor used to be pressing against other structures in Kevin’s brain stem such as a ventricle that holds cerebrospinal fluid (remember back to February when he had a “brain drain” tube in to help with the drainage of that ventricle?). Now, the tumor is not nearly as threatening to other items in the brain stem.
The MRI also showed decreased enhancement (structure) of the tumor. An especially dangerous tumor would have a lot of circulatory enhancement, but the MRI shows that there’s not much structure to this tumor. The Avastin chemotherapy is most likely helping on this front, since the Avastin attempts to shut off circulation to the tumor.
Overall, the MRI confirms that the tables have finally started to turn Kevin’s way. While this is excellent news, it also means that Kevin needs to fight even harder. As I said before, if all goes well, it could take years for all the tissue, blood, etc. in the affected area to reabsorb. It could take longer for his nerves and muscles to rewire, overcome atrophy and regain their normal function. This turn in the game means that Kevin needs to fight harder and truly take ownership of his conquest over Bob and Steve. Think of it as a 49-0 score in the first quarter of a football game, with Steve and Bob obnoxiously scoring touchdown after pompous touchdown. Well, now Kevin has scored about four touchdowns of his own, and it’s only the start of the second quarter (I guess this is turning out to be a very high-scoring game). Bob and Steve are still winning 49-28, but this turn in the tables motivates Kevin even more and makes us cheer even louder. The game is far from over. As Dad told Kevin when he came out of the MRI, “the fight is on!”
We see this as also meaning that you, as cheerleaders, have been doing something right for the past couple months. Now is certainly not the time to quit supporting Kevin—we need to keep up what’s been working, if not double our efforts to really get Kevin’s momentum going. The reaffirmed breakdown in the tumor is giving Kevin more reason to fight, and it should give us more reason to cheer him on. Thank you for all your cheerleading over the past 9 months, and please, keep it up!!!
To cut to the quick, the scan today reaffirmed our suspicions and showed that the tumor has shrunk significantly. Yes, it is still there, and it will take many months, possibly years, for everything in that area to completely reabsorb into the brain stem. However, this is the first scan that has shown significant reversal of the tumors’ growth. At the moment, Bob and Steve are retreating!
Some of you with excellent memories may ask… but what about the last MRI in May, after Kevin had a seizure in the Dominican rehab facility and had to be admitted to the main Dominican Hospital for a few days? That MRI showed growth in the tumor, right?
All of that is correct. Bear with me while I try to explain. Yes, the previous MRI had shown that the affected area of Kevin’s brain stem had grown. However, the “growth” as seen on MRIs after radiation therapy doesn’t necessarily mean the tumor is growing. It could also be the agitation of the tumor, and a sign that the tumor is breaking apart. In fact, the “growth” on those post-radiation MRIs could even mean better long-term success in eliminating the tumor. Go figure. So, growth on the MRI can apparently mean that the tumor is agitated and will break apart in the future, or it could actually mean tumor growth. See why we like to trust his symptoms as better signs of his overall progress? We certainly don’t want Kevin to get discouraged from growth on a MRI scan if that “growth” may mean eventual success.
Whether the growth on the previous MRI was actual tumor growth or a sign of the tumor’s agitation, the pattern of growth has reversed for the first time since November 2009. The growth as seen on the previous MRI has disappeared. Two characteristics have significantly improved; the edema (swelling) and the mass effect (how much the tumor is pushing on other structures in the area). The decrease in edema is especially wonderful, seen as Kevin is on an extremely low dosage of steroids. Therefore, this decrease in swelling simply means that things are getting better; the steroids are no longer helping much to reduce the edema.
Furthermore, the tumor’s mass effect has dramatically improved. The tumor used to be pressing against other structures in Kevin’s brain stem such as a ventricle that holds cerebrospinal fluid (remember back to February when he had a “brain drain” tube in to help with the drainage of that ventricle?). Now, the tumor is not nearly as threatening to other items in the brain stem.
The MRI also showed decreased enhancement (structure) of the tumor. An especially dangerous tumor would have a lot of circulatory enhancement, but the MRI shows that there’s not much structure to this tumor. The Avastin chemotherapy is most likely helping on this front, since the Avastin attempts to shut off circulation to the tumor.
Overall, the MRI confirms that the tables have finally started to turn Kevin’s way. While this is excellent news, it also means that Kevin needs to fight even harder. As I said before, if all goes well, it could take years for all the tissue, blood, etc. in the affected area to reabsorb. It could take longer for his nerves and muscles to rewire, overcome atrophy and regain their normal function. This turn in the game means that Kevin needs to fight harder and truly take ownership of his conquest over Bob and Steve. Think of it as a 49-0 score in the first quarter of a football game, with Steve and Bob obnoxiously scoring touchdown after pompous touchdown. Well, now Kevin has scored about four touchdowns of his own, and it’s only the start of the second quarter (I guess this is turning out to be a very high-scoring game). Bob and Steve are still winning 49-28, but this turn in the tables motivates Kevin even more and makes us cheer even louder. The game is far from over. As Dad told Kevin when he came out of the MRI, “the fight is on!”
We see this as also meaning that you, as cheerleaders, have been doing something right for the past couple months. Now is certainly not the time to quit supporting Kevin—we need to keep up what’s been working, if not double our efforts to really get Kevin’s momentum going. The reaffirmed breakdown in the tumor is giving Kevin more reason to fight, and it should give us more reason to cheer him on. Thank you for all your cheerleading over the past 9 months, and please, keep it up!!!
Saturday, August 7, 2010
More Kidney Stones?
Friday Kevin had a rather tough day. He still may have some kidney stones which give him occasional trouble. After not sleeping well, in the morning he was nauseated with flank and groin pain. Early afternoon Kevin had blood in his urine. Straining showed the appearance of some rough material. Poor kid. Fortunately, Kevin seems to be doing better today.
We were happy that no therapy sessions were scheduled Friday since Kevin was not feeling well. Thursday was very productive in physical therapy. He worked hard in the "LiteGait", a partial weight bearing contraption to help with walking. Kevin gets strapped in and hoisted up so that he stands on his feet. While supported by the apparatus, and with the therapist directing, Kevin then tries moving his feet forward one at a time. It is not as easy as it sounds however. Not only is Kevin needing to rebuild his atrophied muscles, his brain requires "rewiring" as well. It has to learn new pathways in order to tell his legs how to move appropriately. We were encouraged by how well Kevin looked and moved on Thursday. The last time he was in a LiteGait was at Stanford Hospital late January before the bleed and long ICU stay. Kevin's trunk strength and coordination are much better now. It certainly is not an easy exercise for Kevin yet, but he has definitely improved.
*This is Mom's last post as Stacy is due to return home later today.
We were happy that no therapy sessions were scheduled Friday since Kevin was not feeling well. Thursday was very productive in physical therapy. He worked hard in the "LiteGait", a partial weight bearing contraption to help with walking. Kevin gets strapped in and hoisted up so that he stands on his feet. While supported by the apparatus, and with the therapist directing, Kevin then tries moving his feet forward one at a time. It is not as easy as it sounds however. Not only is Kevin needing to rebuild his atrophied muscles, his brain requires "rewiring" as well. It has to learn new pathways in order to tell his legs how to move appropriately. We were encouraged by how well Kevin looked and moved on Thursday. The last time he was in a LiteGait was at Stanford Hospital late January before the bleed and long ICU stay. Kevin's trunk strength and coordination are much better now. It certainly is not an easy exercise for Kevin yet, but he has definitely improved.
*This is Mom's last post as Stacy is due to return home later today.
Tuesday, August 3, 2010
Solar Showers
Another successful trip into the Outpatient Oncology Unit today. Only one I. V. was administered this week as per schedule. The Oncologist was happy with Kevin's presentation. Kevin's vitals were great overall. His weight did jump 6 lbs....what a bit too much chocolate birthday cake, cupcakes, and candy will do. Luckily the rest of us did not have to get on a scale too! I swear, after we finish up that last chocolate grenache cake from the Buttery, we will be better, honest!
Kevin's bouncy vision continues to be an issue. We have been told that the first symptoms to show up will be the last to leave. Yes, bouncy vision was a problem certainly as far back as late October. Kevin also has some annoying mild headaches. Are they due to the steroid taper, bouncy eyes, or something else? Hopefully with continued treatments this too will get better.
Usually on Chemo Tuesdays Kevin takes the rest of the day off and relaxes in his "comfy chair". Today after a short rest, and a Pleasure Point Pizza slice for lunch, he worked on some therapy exercises for his trunk strength. Kathlin rewarded him with a solar shower. Since it is very difficult for Kevin to bathe inside with our shower/tub on the first floor, we have rigged up an outdoor camp shower on our sunny back deck. The water heats up nicely, as long as the morning fog clears out. We can easily wheel his chair right in and take care of business. Kevin stays nice and warm sheltered from the breeze. By the time they are finished, Kathlin usually ends up pretty sweaty. Unfortunately the solar heated water bag has been drained by then with no water left for her!
*contributed by Mom while Stacy is camping in Colorado
Sunday, August 1, 2010
Cards from all Over
*Stacy is out of communication this week camping in the Rockies, so Mom is filling in for the next several days.
Kevin is still working his way through the birthday cards. He has made it through 219 with roughly 50 left to go. Gives new meaning to birthday "week". Kevin hasn't minded the extra speech practice of telling Kathlin what your connections are to him. Of course we also get to share who some of you are as well. Thank you for such inspiring words. The positive energy that flowed from your cards has given Kevin, and all of us, quite a boost.
Cards came in from Canada, England, France, Scotland, and the Netherlands, as well as from California, Hawaii, Washington, Colorado, Arizona, Nevada, Montana, Minnesota, Nebraska, Illinois, Michigan, Maine, Connecticut, Massachusetts, New York, New Jersey, Pennsylvania, Maryland, Virginia, Washington DC, and Florida. How fitting for a Geography/Geology major!
Kevin accomplished another milestone this week. Friday evening he went on his first social outing. Close friends recently built a pizza oven for their outdoor patio. We enjoyed assembling yummy pizzas to be baked and shared family style. Kevin got to pick his choice of ingredients which were: pesto, mozzarella, goat cheese, Parmesan, chicken basil sausage, and caramelized onions on a olive oil brushed crust. The evening was fun but chilly. Kevin was pretty exhausted by the end, but as he said, "I have all weekend to rest."
Friday, July 30, 2010
After the Excitement
Kevin had a wonderful birthday, and much of that success is due to all of you—friends, family, friends of friends and so on. We now have a ridiculous amount of chocolate cakes, cupcakes and candy in the house, but that’s not the worst problem to have! Kevin has been enjoying dessert samplers every evening.
The birthday cards also were a huge hit. We put all the cards in a big wrapped box (pictured in the post below... that's about twice the size of a shoe box). When Kevin took the lid off the box, he squeaked out an overwhelmed “wow” before his eyes teared up. This was a great way to show him how much support he has. When all the messages of support come at once, it’s so much easier to comprehend how many people are out there thinking of him. Plus, the fact that he can hold each card in his hand makes the volume much more tangible. Showing him numbers of how many people check the blog each day just doesn’t have the same impact as holding a box of a few hundred cards on his lap. We haven’t reached an exact total count yet because he’s still working on opening and reading all the cards. Thank you so much to all of you who sent cards and postcards—you’ve helped Kevin truly understand how much he is loved by you all!
Even with all the emotional excitement on his birthday, Kevin managed to keep his energy level high. On his birthday and the day after, he was able to complete some great exercises with his left side in physical and occupational therapy. The day after his birthday, he stayed active and up in his wheelchair until about 6:30 p.m.! Yesterday, the excitement finally caught up to him, and he was pretty exhausted. Once Kevin got home from speech and physical therapy, he got to rest for the remainder of the day.
Today, Kevin is very concerned about his eyes. His double vision has improved over the past couple months, but his bouncing vision remains. This was one of the first symptoms to develop back in November, so the doctors have said it may be one of the last symptoms to leave. Over the past few days, his eyes have also been watering, stinging and giving him a bit of a headache. Kevin is very worried about this, since he’s very in tune with each new symptom that arises. However, the rest of us have a hunch that this is a combination of allergies and side effects of chemotherapy rather than a new symptom. Whatever it is, we hope it resolves soon so Kevin can be a bit more at ease.
Thank you again to everyone who sent Kevin a birthday card! We hope his new comprehension of his huge support network will give him new strength to fight Steve and Bob day after day.
The birthday cards also were a huge hit. We put all the cards in a big wrapped box (pictured in the post below... that's about twice the size of a shoe box). When Kevin took the lid off the box, he squeaked out an overwhelmed “wow” before his eyes teared up. This was a great way to show him how much support he has. When all the messages of support come at once, it’s so much easier to comprehend how many people are out there thinking of him. Plus, the fact that he can hold each card in his hand makes the volume much more tangible. Showing him numbers of how many people check the blog each day just doesn’t have the same impact as holding a box of a few hundred cards on his lap. We haven’t reached an exact total count yet because he’s still working on opening and reading all the cards. Thank you so much to all of you who sent cards and postcards—you’ve helped Kevin truly understand how much he is loved by you all!
Even with all the emotional excitement on his birthday, Kevin managed to keep his energy level high. On his birthday and the day after, he was able to complete some great exercises with his left side in physical and occupational therapy. The day after his birthday, he stayed active and up in his wheelchair until about 6:30 p.m.! Yesterday, the excitement finally caught up to him, and he was pretty exhausted. Once Kevin got home from speech and physical therapy, he got to rest for the remainder of the day.
Today, Kevin is very concerned about his eyes. His double vision has improved over the past couple months, but his bouncing vision remains. This was one of the first symptoms to develop back in November, so the doctors have said it may be one of the last symptoms to leave. Over the past few days, his eyes have also been watering, stinging and giving him a bit of a headache. Kevin is very worried about this, since he’s very in tune with each new symptom that arises. However, the rest of us have a hunch that this is a combination of allergies and side effects of chemotherapy rather than a new symptom. Whatever it is, we hope it resolves soon so Kevin can be a bit more at ease.
Thank you again to everyone who sent Kevin a birthday card! We hope his new comprehension of his huge support network will give him new strength to fight Steve and Bob day after day.
Tuesday, July 27, 2010
Happy Birthday Kevin!
Today is Kevin’s 22nd birthday. It’s a gross understatement to say we’re all happy that Kevin can celebrate his birthday this year. We’re thrilled beyond belief. To be quite frank, there were times in January, February and March when we weren’t sure if Kevin would be able to celebrate another birthday. Of course, none of us are ever 100% sure if we’ll celebrate another birthday, but looking forward to our next birthday is something that we twenty-somethings take for granted. When the reality of our mortality stares us down so intensely, birthdays seem to be much larger milestones. So, the fact that Kevin has gotten out of bed, is sitting in a wheelchair at the table and will eat Texas Sheet Cake (the birthday cake Mom has made for us since we were kids) on his birthday is extremely impressive. Combined with his current upward trend of improvement, this day is truly a cause for celebration!
Above is a picture of the birthday cards we’ve received from friends and family around the world. Thank you so much to everyone for sending them! We have yet to give him the cards and presents—he’s still working on breakfast—but tomorrow I will report how he liked seeing all of your support.
It’s a typical grey, foggy and cold summer day in Aptos, but we will try our best to make the atmosphere as warm and celebratory as possible. Just a few months ago, Kevin couldn’t sit up, speak, eat, drink, and could barely move any part of his body. Now, his movement and abilities have improved so much that his unique mannerisms are returning. There are moments when I look at him out of the corner of my eye and see the real Kevin—the healthy Kevin. There are moments when a “yeah” escapes from his mouth with completely normal inflection and his true tone of voice. We have a million of these accomplishments to celebrate today, and we’ll celebrate them the best we can. Thank you to everyone for sending in birthday cards or postcards. We really appreciate you all sending in a physical showing of your support! Happy 22nd Birthday Kevin!
Friday, July 23, 2010
Learning to Walk
On Thursday, Kevin had a great day in physical therapy. He began working on the parallel bars, which the therapists use to teach patients to walk. The patient helps hold their body up with their arms on the bars, and they can walk between them. Kevin didn’t do the motions by himself; the therapist helped direct his arms and legs. However, the point remains that he has started to take some steps toward walking!
When Kevin gets home from physical therapy, he usually wants to sit in the blue reclining “comfy chair” to relax and take it easy. However, after the amazing physical therapy session on Thursday, he wanted to sit up at the table for lunch in his wheelchair. He didn’t get into the comfy chair until after 3 p.m. We’re thrilled that his attitude seems to have improved—he’s willing to take on new challenges and exert a lot of effort nearly every day.
Kevin has tried a new milkshake from Marianne’s that he really likes. However, it isn’t technically a chocolate shake, so it can’t go on the rankings list, but I’ll mention it here. Kevin took one sip of the Heath Bar milkshake and made a face, so Mom and Kathlin thought the shake was too cold and gave him a brainfreeze. However, the face meant that he was amazed at how good it tasted!
So far, we have received about 145 birthday cards! Thank you so much to all of you for sending birthday wishes to Kevin and showing your support. The cards and well wishes will really mean a lot to him, so thank you, thank you, thank you!
When Kevin gets home from physical therapy, he usually wants to sit in the blue reclining “comfy chair” to relax and take it easy. However, after the amazing physical therapy session on Thursday, he wanted to sit up at the table for lunch in his wheelchair. He didn’t get into the comfy chair until after 3 p.m. We’re thrilled that his attitude seems to have improved—he’s willing to take on new challenges and exert a lot of effort nearly every day.
Kevin has tried a new milkshake from Marianne’s that he really likes. However, it isn’t technically a chocolate shake, so it can’t go on the rankings list, but I’ll mention it here. Kevin took one sip of the Heath Bar milkshake and made a face, so Mom and Kathlin thought the shake was too cold and gave him a brainfreeze. However, the face meant that he was amazed at how good it tasted!
So far, we have received about 145 birthday cards! Thank you so much to all of you for sending birthday wishes to Kevin and showing your support. The cards and well wishes will really mean a lot to him, so thank you, thank you, thank you!
Tuesday, July 20, 2010
Joys of Food
Tuesday morning, Kevin received more chemotherapy. The Dominican Hospital oncologist who oversees Kevin’s care in Santa Cruz hadn’t actually seen Kevin for a month. Kevin was worried that he hadn’t made enough progress for the oncologist to be impressed, which was one of those things that we simply couldn’t convince him otherwise. It’s tough for Kevin to believe that he’s improving when he has heard that so many times before. Of course, though, the oncologist gave Kevin a thumbs up today—he was very happy with how Kevin looks and the coordination and muscle strength he can display.
Kevin got through the chemotherapy appointment well. On the way home, they stopped at Pleasure Pizza for dollar Tuesdays (for those of you not from Santa Cruz, Pleasure Pizza sells darn good dollar cheese slices on Tuesdays). The whole family got to enjoy dollar slices once they got home from the hospital, which was a great reward for an appointment well done.
On the topic of eating, we have recently been thinking about how Kevin’s eating has vastly improved. When Kevin was in the Dominican Rehab hospital, it took him hours to complete a meal, and he often needed Ensure shakes to supplement the calories. Heck, in February, Kevin was receiving nutrition and calories strictly through his stomach tube. Now, only four months later, he’s almost eating at a normal pace again. He almost can finish a meal faster than I do—but that’s not saying much, because I eat very slowly! But he is now able to get all his calories by mouth, and we can’t remember the last time he had an Ensure.
Kevin’s outpatient physical, occupational and speech therapy sessions continue to go well. Each day he goes into therapy is a big outing that tires him out, but he’s continuing to do well in therapy. Kathlin, Mom and Dad are great at remembering the exercises that the therapists do with Kevin so that they can replicate the therapy at home.
The birthday cards have started pouring in—thank you so much! If you haven’t sent one in yet, you still have time, so go ahead and drop one in the mail. I’ll have to post a picture of how many cards Kevin receives. He really appreciates all of your support and love, so anything we can do to remind him of it definitely improves his mood. Thanks again!
Kevin got through the chemotherapy appointment well. On the way home, they stopped at Pleasure Pizza for dollar Tuesdays (for those of you not from Santa Cruz, Pleasure Pizza sells darn good dollar cheese slices on Tuesdays). The whole family got to enjoy dollar slices once they got home from the hospital, which was a great reward for an appointment well done.
On the topic of eating, we have recently been thinking about how Kevin’s eating has vastly improved. When Kevin was in the Dominican Rehab hospital, it took him hours to complete a meal, and he often needed Ensure shakes to supplement the calories. Heck, in February, Kevin was receiving nutrition and calories strictly through his stomach tube. Now, only four months later, he’s almost eating at a normal pace again. He almost can finish a meal faster than I do—but that’s not saying much, because I eat very slowly! But he is now able to get all his calories by mouth, and we can’t remember the last time he had an Ensure.
Kevin’s outpatient physical, occupational and speech therapy sessions continue to go well. Each day he goes into therapy is a big outing that tires him out, but he’s continuing to do well in therapy. Kathlin, Mom and Dad are great at remembering the exercises that the therapists do with Kevin so that they can replicate the therapy at home.
The birthday cards have started pouring in—thank you so much! If you haven’t sent one in yet, you still have time, so go ahead and drop one in the mail. I’ll have to post a picture of how many cards Kevin receives. He really appreciates all of your support and love, so anything we can do to remind him of it definitely improves his mood. Thanks again!
Sunday, July 18, 2010
Luminaria
Kevin continues to improve on various things every day. The improvements are small, but sometimes can take us by surprise. I walked into Kevin’s room last night to ask if he wanted cookies for dessert, and he said in a perfectly clear and un-slurred voice, “I do want a cookie, but I probably shouldn’t,” seen as he had just finished half of a Snickers bar. My jaw dropped at how crisp his words were, and I told him he could have a cookie because his speech sounded so good.
Overall, his mood has improved as well. Yesterday he was a bit bummed out, but in general over the past week, he’s been pretty upbeat and positive, considering what he’s going through. He’s been smiling and laughing more often. He’s also been more actively engaged in his surroundings and feels more comfortable inserting comments into a situation. For example, when we were getting him out of the car one morning for outpatient therapy, Kevin reminded us to hang up the handicapped placard on the rearview mirror. He’s heard me sneezing like crazy (it’s a tough year for my allergies), and once when I walked through the room he was in, he stopped me and commented on how bad my allergies must be. A few weeks ago, he didn’t seem nearly as aware of his surroundings, and he didn’t feel confident enough to talk more than was absolutely essential.
Because of the up-and-down route we’ve had thus far, it’s hard for all of us to get too excited about the progress Kevin is making. However, the improvements this time around seem to be occurring more quickly and compounding to create even better progress.
Thank you for beginning to send in birthday cards! This will be a great way for Kevin to comprehend how much support he has around the world. His birthday is in a little over a week, so if you haven’t yet sent a card or postcard, there’s still time. Thank you again for being part of such a wonderful support network for Kevin and our family!
.jpg)
Tuesday, July 13, 2010
Upstairs
For the first time since he’s been home, we got Kevin to the upstairs floor of our house. On Sunday, Dad, Mom, Kathlin and I managed to carry Kevin upstairs (and back down again) while he was sitting in a plastic deck chair. When we split his weight between the four of us, Kevin wasn’t too difficult to carry. He kept laughing while we were carrying him in the chair because he felt like a king. We just needed a couple friends fanning him with palm fronds, and the scene would have been complete.
Once Kevin was upstairs, he watched the World Cup final game with the rest of the family. However, the game was made so slow and boring by the continuous fouling, so Kevin nearly fell asleep several times. He managed to shake himself awake to see the end of the game. Later that afternoon, he watched the preparation of Reuben sandwiches in our kitchen. We have been working through Kevin’s special requests for food, and Reubens was on his list. They enjoyed a late lunch / early dinner of what they described as awesome Reuben sandwiches. The sandwiches were all the more amazing because it was Dad’s first time making them, and he put in a lot of effort—he slow-cooked the corned beef for a couple days and made the cabbage from scratch. Kevin said it “felt like torture” to be in the kitchen and not be able to do anything, but we have since then talked with him about that. We are encouraging him to take that negative feeling of helplessness and turn it into something positive. If it feels horrible to not do anything, then next time he’s up there, we’ll make sure that he can do something. Plus, if he wants to do something that badly, he has a lot of incentive to practice the movements and work on it.
In previous weeks, Kevin has gotten nauseated on the Sunday nights that follow a Tuesday chemotherapy session. However, this Sunday he didn’t have any problems. We made sure we were staying on top of his nausea with anti-nausea medications, and he got through the afternoon and evening just fine.
Kevin is getting closer to being entirely off the oral steroids he’s been on since November. He is now at a very low amount per day. This is great news—it means his body is getting closer to handling the swelling on its own. However, the tough part at this stage of the weaning is the emotional and mental side effects of the steroids. Kevin’s body has grown so accustomed to having the steroids, so now that he is almost off of them, his body is trying to chemically rebalance, and his emotions are getting thrown all out of whack. Kevin needs a lot of pep talks and reminders about how well he’s doing, because his own brain likes to tell him otherwise while “the steroids are talking.” In the room where Kevin hangs out most of the time, we’ve started sticking post-its listing things he can now do that he couldn’t do just a few months ago. The progress is going so slowly that Kevin sometimes forgets he’s improving. However, when he’s reminded that he couldn’t eat a few months ago, he realizes how far he has come.
Once Kevin was upstairs, he watched the World Cup final game with the rest of the family. However, the game was made so slow and boring by the continuous fouling, so Kevin nearly fell asleep several times. He managed to shake himself awake to see the end of the game. Later that afternoon, he watched the preparation of Reuben sandwiches in our kitchen. We have been working through Kevin’s special requests for food, and Reubens was on his list. They enjoyed a late lunch / early dinner of what they described as awesome Reuben sandwiches. The sandwiches were all the more amazing because it was Dad’s first time making them, and he put in a lot of effort—he slow-cooked the corned beef for a couple days and made the cabbage from scratch. Kevin said it “felt like torture” to be in the kitchen and not be able to do anything, but we have since then talked with him about that. We are encouraging him to take that negative feeling of helplessness and turn it into something positive. If it feels horrible to not do anything, then next time he’s up there, we’ll make sure that he can do something. Plus, if he wants to do something that badly, he has a lot of incentive to practice the movements and work on it.
In previous weeks, Kevin has gotten nauseated on the Sunday nights that follow a Tuesday chemotherapy session. However, this Sunday he didn’t have any problems. We made sure we were staying on top of his nausea with anti-nausea medications, and he got through the afternoon and evening just fine.
Kevin is getting closer to being entirely off the oral steroids he’s been on since November. He is now at a very low amount per day. This is great news—it means his body is getting closer to handling the swelling on its own. However, the tough part at this stage of the weaning is the emotional and mental side effects of the steroids. Kevin’s body has grown so accustomed to having the steroids, so now that he is almost off of them, his body is trying to chemically rebalance, and his emotions are getting thrown all out of whack. Kevin needs a lot of pep talks and reminders about how well he’s doing, because his own brain likes to tell him otherwise while “the steroids are talking.” In the room where Kevin hangs out most of the time, we’ve started sticking post-its listing things he can now do that he couldn’t do just a few months ago. The progress is going so slowly that Kevin sometimes forgets he’s improving. However, when he’s reminded that he couldn’t eat a few months ago, he realizes how far he has come.
Thursday, July 8, 2010
Three Chemotherapies
On Tuesday, Kevin received all three chemotherapy medications that he is currently taking. The appointment was a long one; he was at the hospital from 9 a.m. to 1 p.m. However, he managed the appointment and the trip to and from the hospital well. The Netherlands/Uruguay soccer game on TV helped the appointment go a bit faster—plus, Kevin, Kathlin, Mom and Dad were happy they got to see the entire game!
After the major dose of chemo on Tuesday, we have been keeping a close eye on Kevin’s nausea and coughing. So far this week, he hasn’t had many major problems (knock on wood!). He has been coughing a bit more, which always makes us nervous because it might mean he isn’t controlling his secretions well. For those of you keeping close track, the secretions, coughing and swallowing issue is one of the main symptoms Kevin has been dealing with since he got sick. However, Kevin’s coughing hasn’t prevented him from eating well over the past few days, and he’s managed to keep up a good appetite. He has a new favorite milkshake: the Mexican Chocolate shake from Marianne’s. The cinnamon and chocolate combination seems to hit the spot—he even requested the shake a second time this week.
Today Kevin starts outpatient therapy. Mom, Dad, Kevin and Kathlin have just left for a long appointment for speech and physical therapy evaluations. After today, we will get a feel for how Kevin handles traveling to therapy.
We have thought of another way that you all can show Kevin your support. Kevin’s 22nd birthday is on July 27th. Since it’ll be an extremely emotional day for Kevin, he won’t be up for a huge party. However, we want to continually remind him how much support he has out there, so we thought of another way for you all to give him birthday wishes. It would be wonderful if each of Kevin’s supporters sent him a birthday card or postcard via “snail mail.” We will collect the cards as they come in. Presenting all the cards at once to Kevin on his birthday would be an impressive physical showing of just how many of you are cheering him on.
You can send postcards or birthday cards (no packages please!) to:
Kevin Williams
240 Quail Run
Aptos, CA 95003-9565
Thank you so much for your continued support and readership of the blog. If you feel like taking a few moments to write Kevin a birthday card or postcard, please do! Even if you don't directly know Kevin well or know him through someone else, receiving cards from you all will show him just how many people are thinking about him. Feel free to send the cards at any time; we’ll collect those that come in early and save them for his birthday. Also, thank you for the great suggestions for podcasts and geology / geography videos—if you think of any others, please pass them on!
After the major dose of chemo on Tuesday, we have been keeping a close eye on Kevin’s nausea and coughing. So far this week, he hasn’t had many major problems (knock on wood!). He has been coughing a bit more, which always makes us nervous because it might mean he isn’t controlling his secretions well. For those of you keeping close track, the secretions, coughing and swallowing issue is one of the main symptoms Kevin has been dealing with since he got sick. However, Kevin’s coughing hasn’t prevented him from eating well over the past few days, and he’s managed to keep up a good appetite. He has a new favorite milkshake: the Mexican Chocolate shake from Marianne’s. The cinnamon and chocolate combination seems to hit the spot—he even requested the shake a second time this week.
Today Kevin starts outpatient therapy. Mom, Dad, Kevin and Kathlin have just left for a long appointment for speech and physical therapy evaluations. After today, we will get a feel for how Kevin handles traveling to therapy.
We have thought of another way that you all can show Kevin your support. Kevin’s 22nd birthday is on July 27th. Since it’ll be an extremely emotional day for Kevin, he won’t be up for a huge party. However, we want to continually remind him how much support he has out there, so we thought of another way for you all to give him birthday wishes. It would be wonderful if each of Kevin’s supporters sent him a birthday card or postcard via “snail mail.” We will collect the cards as they come in. Presenting all the cards at once to Kevin on his birthday would be an impressive physical showing of just how many of you are cheering him on.
You can send postcards or birthday cards (no packages please!) to:
Kevin Williams
240 Quail Run
Aptos, CA 95003-9565
Thank you so much for your continued support and readership of the blog. If you feel like taking a few moments to write Kevin a birthday card or postcard, please do! Even if you don't directly know Kevin well or know him through someone else, receiving cards from you all will show him just how many people are thinking about him. Feel free to send the cards at any time; we’ll collect those that come in early and save them for his birthday. Also, thank you for the great suggestions for podcasts and geology / geography videos—if you think of any others, please pass them on!
