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.
Friday, July 30, 2010
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!
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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!
Sunday, July 4, 2010
Happy Fourth of July!
Kevin continues to do well at home. He has completed the sessions of physical, occupational and speech therapy at our house. There were a limited number when the therapists could come to Kevin. Now, we will give outpatient therapy a try. This will be a larger ordeal and more difficult for Kevin because of the car trip to and from appointments, but we’re still going to give it a shot.
In the last couple sessions of occupational therapy at our house, the therapist was working on playing games with Kevin. Holding a hand of cards and placing a single card down on the table is very difficult for Kevin because it requires fine motor skills, but he’s willing to practice the motions and play some games. The other day, he managed to beat Kathlin and the occupational therapist at “Go Fish!” He’s also been playing (and doing very well at) “Turkeyfoot,” a traditional Williams family game that’s similar to dominos.
The Colgate community continues to be extremely supportive and helpful for Kevin and us throughout this process. We’d like to thank Kevin’s Colgate friends who have flown out or stopped by on their road trips to California. It’s been wonderful for Kevin and Kathlin to see you and reconnect to their life back at Colgate. Thank you so much for your visits, and please continue to stay in touch with Kevin and Kathlin!
We also just received a list of interesting online lectures and podcasts from a few of Kevin’s Colgate professors. We have been searching for things to engage Kevin’s mind, but it’s difficult when he can’t yet read books or articles. Kathlin has been reading him some Geography and Geology things, but we’re excited to have Kevin start listening to and watching these USGS lectures, climate change podcasts and other material. Please let us know if any of you have suggestions for videos or podcasts that would stimulate Kevin’s mind (without requiring him to read anything). Anything relating to Geography or Geology is wonderful, but anything interesting on other topics is also welcome. Thank you again to the Colgate professors for the suggestions.
Happy Fourth of July to everyone—we hope you have a wonderful holiday!
In the last couple sessions of occupational therapy at our house, the therapist was working on playing games with Kevin. Holding a hand of cards and placing a single card down on the table is very difficult for Kevin because it requires fine motor skills, but he’s willing to practice the motions and play some games. The other day, he managed to beat Kathlin and the occupational therapist at “Go Fish!” He’s also been playing (and doing very well at) “Turkeyfoot,” a traditional Williams family game that’s similar to dominos.
The Colgate community continues to be extremely supportive and helpful for Kevin and us throughout this process. We’d like to thank Kevin’s Colgate friends who have flown out or stopped by on their road trips to California. It’s been wonderful for Kevin and Kathlin to see you and reconnect to their life back at Colgate. Thank you so much for your visits, and please continue to stay in touch with Kevin and Kathlin!
We also just received a list of interesting online lectures and podcasts from a few of Kevin’s Colgate professors. We have been searching for things to engage Kevin’s mind, but it’s difficult when he can’t yet read books or articles. Kathlin has been reading him some Geography and Geology things, but we’re excited to have Kevin start listening to and watching these USGS lectures, climate change podcasts and other material. Please let us know if any of you have suggestions for videos or podcasts that would stimulate Kevin’s mind (without requiring him to read anything). Anything relating to Geography or Geology is wonderful, but anything interesting on other topics is also welcome. Thank you again to the Colgate professors for the suggestions.
Happy Fourth of July to everyone—we hope you have a wonderful holiday!
