Kevin is still making very slow improvements in Santa Cruz. He’s happy to be someplace with edible food, and we’re happy he’s closer to home. Kevin had a chocolate shake from Betty’s Burgers and loved it—we need to start the rankings back up again!
Kevin’s platelets were high enough to restart chemotherapy over the weekend. Last week, he stopped one of the many medications he was on, and voilà, his platelets are now higher than they’ve been in months! Medications do have the ability to lower platelets, and while most medications say it’s an extremely rare side effect, we’ve found that if there’s even a chance of it occurring, it’ll happen to Kevin. Kevin is very susceptible to medications’ side effects. Regardless, we’re happy that chemotherapy has restarted.
The course of chemotherapy is scheduled differently from radiation. Each chemo “course” lasts 28 days, followed by 14 days off. This schedule is supposed to continue for a year.
Other than restarting chemo, the main issue recently has been Kevin’s energy level. He’s able to do what the therapists ask of him, but he tires very quickly. His potassium levels are critically low, which can drastically affect his energy. Our best guess is that this has been caused by the prolonged use of steroids, which have been used to decrease swelling around the tumor. Kevin is almost off the steroids—he’s at a very low dosage now. The doctors have been giving him potassium supplements, and Mom will start bringing in smoothies packed full of fruits high in potassium. We hope that as his steroids decrease and his potassium intake increases, more energy will return.
Thank you to everyone who attended, organized and helped with trivia night Monday night at Donovan’s Pub! I heard that the night was an amazing success. What a wonderful outpouring of support from Colgate’s community. We continue to be impressed by you all!
Also, I want to send Relay for Life walkers belated thanks for joining the fight against cancer. Congratulations to our cousin Patrick at Virginia Tech and the participants at Colgate for fundraising, walking through the night and finishing!
Aunt Robin and Uncle Craig’s brain tumor walk is this Saturday, so I’m putting out the last call for anyone who would like to donate to “Kevin’s Team,” with proceeds going to the National Brain Tumor Society. Thank you to the many of you who have already donated—Aunt Robin and Uncle Craig have reached their fundraising goal! Of course, further donations are always welcome. Follow this link, then click on either Aunt Robin or Uncle Craig's name to donate. As of tonight, Aunt Robin is #9 on the Top 10 Participants fundraising list—good work, everyone!
Thank you again to everyone for your incredible support. If you’d like Kevin to see your lovely face and hear a message of support in your own words, take a digital video of yourself saying hello and send it to kickingkevinscancer@gmail.com.
Tuesday, April 27, 2010
Wednesday, April 21, 2010
Ways to Help!
Kevin’s first full day in Santa Cruz went well. He has come up with a few achievable goals for this week: to see Chammy (our golden retriever), to finally see the ocean again (he hasn’t seen it since he got sick) and to take a shower. The therapists in Santa Cruz are thrilled to have him back. They spent a lot of time today assessing Kevin’s abilities and successfully tired him out.
And now, as promised, on to more ways you can show Kevin your love and support!
Over the past few months, we’ve been trying to think of a way for Kevin to digitally “see” all of you who are sending so much love and support to him. Tyler, one of Kevin’s close friends, came up with a great idea. He has suggested that people take short videos of themselves saying hello to Kevin, telling him a story, showing him the local scenery, etc. Just get out your digital camera, cell phone or any of these new-fangled devices that can take video, record a message, put it on your computer and send it to kickingkevinscancer@gmail.com. We have started this email account specifically for these videos. Please keep the video shorter than 10 minutes, otherwise we’ll run into problems with file size!
We plan to compile these videos onto a DVD for Kevin. We’re also considering putting some of the videos up on the blog or on the “Kicking Kevin’s Tumor” Facebook group page. When you send a video to kickingkevinscancer@gmail.com, please state whether you’d like your video to just go on the DVD, where only Kevin and the family will see it, or if you’d also like it to be posted on either the Facebook or the blog.
Members of the Colgate community can head to Donovan’s Pub Trivia Night on Monday, April 26 at 8 p.m. For the students who are organizing the trivia night and other fundraisers, checks can be made out to “Kevin Bradley Williams Rehabilitation Fund” and sent to:
Comerica Bank
Attn: Cathy Schlumbrecht
55 River Street
Santa Cruz, CA 95060
For those of you in the Santa Cruz area, there’s one more way you can help out. Down the line, we are considering wheelchair-accessible housing for Kevin in Santa Cruz County. We haven’t had time to do much research on this yet, but we would be interested in a studio, 1-bedroom or granny unit apartment that would be wheelchair accessible. We would greatly appreciate any ideas, leads or information that any of you might have on this topic.
Friends, family, friends of friends, members of the Santa Cruz and Colgate communities… we can’t thank you enough for your all your love, support and help. You’re an amazing source of strength for Kevin and us.
And now, as promised, on to more ways you can show Kevin your love and support!
Over the past few months, we’ve been trying to think of a way for Kevin to digitally “see” all of you who are sending so much love and support to him. Tyler, one of Kevin’s close friends, came up with a great idea. He has suggested that people take short videos of themselves saying hello to Kevin, telling him a story, showing him the local scenery, etc. Just get out your digital camera, cell phone or any of these new-fangled devices that can take video, record a message, put it on your computer and send it to kickingkevinscancer@gmail.com. We have started this email account specifically for these videos. Please keep the video shorter than 10 minutes, otherwise we’ll run into problems with file size!
We plan to compile these videos onto a DVD for Kevin. We’re also considering putting some of the videos up on the blog or on the “Kicking Kevin’s Tumor” Facebook group page. When you send a video to kickingkevinscancer@gmail.com, please state whether you’d like your video to just go on the DVD, where only Kevin and the family will see it, or if you’d also like it to be posted on either the Facebook or the blog.
Members of the Colgate community can head to Donovan’s Pub Trivia Night on Monday, April 26 at 8 p.m. For the students who are organizing the trivia night and other fundraisers, checks can be made out to “Kevin Bradley Williams Rehabilitation Fund” and sent to:
Comerica Bank
Attn: Cathy Schlumbrecht
55 River Street
Santa Cruz, CA 95060
For those of you in the Santa Cruz area, there’s one more way you can help out. Down the line, we are considering wheelchair-accessible housing for Kevin in Santa Cruz County. We haven’t had time to do much research on this yet, but we would be interested in a studio, 1-bedroom or granny unit apartment that would be wheelchair accessible. We would greatly appreciate any ideas, leads or information that any of you might have on this topic.
Friends, family, friends of friends, members of the Santa Cruz and Colgate communities… we can’t thank you enough for your all your love, support and help. You’re an amazing source of strength for Kevin and us.
Tuesday, April 20, 2010
Back in Santa Cruz
Kevin, Kathlin, Mom and Dad said goodbye to the therapists at Santa Clara and moved back to Santa Cruz this afternoon. They were sad to leave the therapists, who still fully acknowledge that Kevin is improving. However, we hope this new situation in Santa Cruz will have a bit more respect for Kevin as a human patient rather than a monetary concern. Plus, everyone's happy to be back in our home county!
The move went well; Kevin didn’t get carsick while being transported over Highway 17, which is an accomplishment. Kevin will actually be in the Skilled Nursing side of the facility in Santa Cruz for now, and will hopefully move to the Acute Rehab Unit in a few weeks. In the Skilled Nursing Facility, Kevin will still receive two hours of therapy each day. He will also have access to the gym, where Kathlin will be able to work with him on his therapy exercises.
Kevin was in the Acute Rehab Unit in Santa Cruz in December, so he knows many of the therapists. The head of occupational therapy walked in his room to greet him, and Kevin waved and greeted her by name. His memory is still as sharp as it always has been! Kevin was excited to choose food for dinner off a menu; Santa Clara just brought whatever was available and didn’t offer any choices. The director of the facility has told Kevin that he should try to regroup and come up with some easy goals he can accomplish this week.
One piece of frustrating news is that Kevin’s platelets fell too low, so he is taking a week off chemotherapy while his platelets recover. Those darn platelets just won’t cooperate!
In the next post, I’ll explain a few things you all can do to help support Kevin even more. It should be coming soon… I just need to get to sleep tonight. Check back soon!
The move went well; Kevin didn’t get carsick while being transported over Highway 17, which is an accomplishment. Kevin will actually be in the Skilled Nursing side of the facility in Santa Cruz for now, and will hopefully move to the Acute Rehab Unit in a few weeks. In the Skilled Nursing Facility, Kevin will still receive two hours of therapy each day. He will also have access to the gym, where Kathlin will be able to work with him on his therapy exercises.
Kevin was in the Acute Rehab Unit in Santa Cruz in December, so he knows many of the therapists. The head of occupational therapy walked in his room to greet him, and Kevin waved and greeted her by name. His memory is still as sharp as it always has been! Kevin was excited to choose food for dinner off a menu; Santa Clara just brought whatever was available and didn’t offer any choices. The director of the facility has told Kevin that he should try to regroup and come up with some easy goals he can accomplish this week.
One piece of frustrating news is that Kevin’s platelets fell too low, so he is taking a week off chemotherapy while his platelets recover. Those darn platelets just won’t cooperate!
In the next post, I’ll explain a few things you all can do to help support Kevin even more. It should be coming soon… I just need to get to sleep tonight. Check back soon!
Saturday, April 17, 2010
Frustration (an Understatement)
To say the very least, the last few days have been extremely draining on Mom, Dad and Kathlin. They have done an amazing job of handling a very difficult and sensitive situation. To make a long and infuriating story much shorter, Santa Clara Valley informed the insurance company that Kevin is "no longer making progress” (even though the therapists asserted he is). The insurance company then decided that Kevin is no longer fit for acute rehab and notified us that Kevin would be sent home next week. Let me reiterate… Kevin is improving, but he still can’t do much by himself. He is not fit to return home. Valley wanted to use the last week of Kevin’s time in the hospital to train Kathlin, Mom and Dad how to be Kevin’s nurses and therapists (occupations that take years of training and cannot be learned in a week). Also, Kevin would still be receiving chemotherapy past the date they wanted to kick him out of the hospital.
The worst thing: when the hospital told the insurance company that Kevin was “not progressing,” the insurance company decided to deny any future acute rehab. As I wrote in the previous post, we strongly believe that Kevin needs acute rehab to continue improving and to keep his fighting spirit going. Acute rehab is still medically necessary for Kevin. Dad managed to successfully explain this to one of the insurance company's doctors. As a result, the insurance company has taken back their decision to deny any further acute rehab. Thanks to Dad’s hard work and the amazing cooperation of the acute rehab unit at Dominican Hospital, Kevin will be transferred to Santa Cruz early next week.
The worst thing: when the hospital told the insurance company that Kevin was “not progressing,” the insurance company decided to deny any future acute rehab. As I wrote in the previous post, we strongly believe that Kevin needs acute rehab to continue improving and to keep his fighting spirit going. Acute rehab is still medically necessary for Kevin. Dad managed to successfully explain this to one of the insurance company's doctors. As a result, the insurance company has taken back their decision to deny any further acute rehab. Thanks to Dad’s hard work and the amazing cooperation of the acute rehab unit at Dominican Hospital, Kevin will be transferred to Santa Cruz early next week.
Kevin likes this decision. He commented, “the food’s better at Santa Cruz, anyway.”
In addition to this unpleasant hospital/insurance situation, a few nights ago, there was an accident while an aide helped Kevin transfer from a wheelchair to his bed. The aide didn’t situate their legs in the correct stance, and Kevin’s right leg slipped and was injured. His right leg—his “good” leg—is now sore and swollen. X-rays and ultrasounds have shown that this is most likely a pulled muscle—there are no broken bones, and the blood clot should not be the cause of the pain. However, we’re frustrated beyond belief that on top of everything else going on right now, Kevin has to go through yet another unexpected painful event.
In other news, the editor-in-chief of the Colgate newspaper wrote a column about Kevin’s situation, the editor’s own health problems and the power of friends’ and family’s support in times like these. You can read the article here. Paul Kasabian, the editor, has hit the nail right on the head; all of your love and support has helped us in innumerable ways. Thank you, for the umpteenth time, to each and every one of you who keeps Kevin in your thoughts.
In addition to this unpleasant hospital/insurance situation, a few nights ago, there was an accident while an aide helped Kevin transfer from a wheelchair to his bed. The aide didn’t situate their legs in the correct stance, and Kevin’s right leg slipped and was injured. His right leg—his “good” leg—is now sore and swollen. X-rays and ultrasounds have shown that this is most likely a pulled muscle—there are no broken bones, and the blood clot should not be the cause of the pain. However, we’re frustrated beyond belief that on top of everything else going on right now, Kevin has to go through yet another unexpected painful event.
In other news, the editor-in-chief of the Colgate newspaper wrote a column about Kevin’s situation, the editor’s own health problems and the power of friends’ and family’s support in times like these. You can read the article here. Paul Kasabian, the editor, has hit the nail right on the head; all of your love and support has helped us in innumerable ways. Thank you, for the umpteenth time, to each and every one of you who keeps Kevin in your thoughts.
Wednesday, April 14, 2010
Insurance Issues, Once Again
Mom, Dad and Kathlin were informed today that the insurance company wants Kevin out of the hospital next Wednesday. The numeric system of achievement that the hospital and insurance company has set up is a way to quantify patients’ progress. According to that system, Kevin does not show significant improvement. To the hospital and insurance company, it does not matter that qualitatively, Kevin IS improving. The problem is that his improvement is too slow to be represented by this numeric system. Therefore, in the eyes of the insurance company, if Kevin is not “improving,” they don’t want to pay to keep him in the rehab unit.
We are incredibly frustrated and upset by this news. Kevin is slowly improving, especially on things that he desperately wants to get better at, like eating. We are infuriated that the system is this exclusive, that improvements like the ones Kevin’s been making do not count in the books as improvements. Therefore, the system ends up sending home those who are the most sick and need the rehab most, and it keeps the ones who are less sick and can complete the required steps most quickly.
It might be obvious by this point in my post that we want Kevin to remain in a rehab unit. He needs the 3+ hours of intensive therapy every day in order to keep these small improvements coming. We don’t want any company or hospital telling Kevin that he can’t be in a rehab unit because he’s not improving and that all his hard work has been for nothing—a) because we don’t want his spirits crushed, and b) because it’s simply not true.
We have been told that all we can do is call the customer service number on the back of our insurance card to file an appeal. However, they are planning to have Kevin out of Valley next Wednesday, and it would take much longer than a week to successfully argue for an appeal through that route.
I guess downer blog posts come with the territory once in a while. This is the battle we’ll be fighting during the next week. I’ll post updates if any new development occurs.
We are incredibly frustrated and upset by this news. Kevin is slowly improving, especially on things that he desperately wants to get better at, like eating. We are infuriated that the system is this exclusive, that improvements like the ones Kevin’s been making do not count in the books as improvements. Therefore, the system ends up sending home those who are the most sick and need the rehab most, and it keeps the ones who are less sick and can complete the required steps most quickly.
It might be obvious by this point in my post that we want Kevin to remain in a rehab unit. He needs the 3+ hours of intensive therapy every day in order to keep these small improvements coming. We don’t want any company or hospital telling Kevin that he can’t be in a rehab unit because he’s not improving and that all his hard work has been for nothing—a) because we don’t want his spirits crushed, and b) because it’s simply not true.
We have been told that all we can do is call the customer service number on the back of our insurance card to file an appeal. However, they are planning to have Kevin out of Valley next Wednesday, and it would take much longer than a week to successfully argue for an appeal through that route.
I guess downer blog posts come with the territory once in a while. This is the battle we’ll be fighting during the next week. I’ll post updates if any new development occurs.
Monday, April 12, 2010
Walks for a Cause
This post is dedicated to a couple of upcoming events that will be honoring Kevin's fight against cancer. Before I explain the events and how you can contribute, if you wish, I'll give the update on Kevin. He has been doing well over the past few days. If his platelet count is high enough, he will start chemotherapy this evening. While we’re a bit nervous about what new side effects the chemo will bring, we’re happy that his treatment will be continuing. Kevin is able to eat more new things every day, which pleases him to no end. Dad's chocolate chip cookies went down well! As a result of a higher calorie intake and therapy, he’s putting on some much-needed weight—most of which is muscle returning to his frame.
Now, on to the two walks that will be happening in the near future. For those of you who have been asking about ways to donate or contribute, these are two great options.
Aunt Robin and Uncle Craig have started “Kevin’s Team” for the Bay Area 5K Brain Tumor Walk on May 1 in Golden Gate Park. Funds raised go towards the National Brain Tumor Society, which invests in brain tumor research and provides support and resources for patients and families. Aunt Robin and Uncle Craig will be rocking Kevin’s favorite colors in matching red Hawaiian t-shirts and black caps. To donate to “Kevin’s Team,” click here, then click on the name of anyone on the team. If you'd like to walk with Kevin's Team and help fundraise, click here, then click on "Join Team." If you'd like to walk with the team, you can order the team shirts here (Item# 410-3156-Red).
April 16-17 (this Friday night!), walkers at Colgate University will circle the track from 6 p.m. to 6 a.m. for Relay for Life. This is an event that takes place at hundreds, maybe even thousands of locations nation-wide. The event raises money for the American Cancer Society. During the “Luminary Ceremony,” a quiet hour when walkers get to focus on why they’re walking, whom they’re walking for and what their goals are, a screen will play a slideshow of people the Colgate community would like to remember or cancer survivors they’d like to honor. Some pictures of Kevin will be shown during this hour. If you’re a Colgate student and would like to create a team or join a team already in existence, click here. You still have time! If you’re not a Colgate student but would still like to support the event, you can donate here.
If you have any questions about the above events, please don't hesitate to post a reply, and I'll be in touch with you shortly.
Now, on to the two walks that will be happening in the near future. For those of you who have been asking about ways to donate or contribute, these are two great options.
Aunt Robin and Uncle Craig have started “Kevin’s Team” for the Bay Area 5K Brain Tumor Walk on May 1 in Golden Gate Park. Funds raised go towards the National Brain Tumor Society, which invests in brain tumor research and provides support and resources for patients and families. Aunt Robin and Uncle Craig will be rocking Kevin’s favorite colors in matching red Hawaiian t-shirts and black caps. To donate to “Kevin’s Team,” click here, then click on the name of anyone on the team. If you'd like to walk with Kevin's Team and help fundraise, click here, then click on "Join Team." If you'd like to walk with the team, you can order the team shirts here (Item# 410-3156-Red).
April 16-17 (this Friday night!), walkers at Colgate University will circle the track from 6 p.m. to 6 a.m. for Relay for Life. This is an event that takes place at hundreds, maybe even thousands of locations nation-wide. The event raises money for the American Cancer Society. During the “Luminary Ceremony,” a quiet hour when walkers get to focus on why they’re walking, whom they’re walking for and what their goals are, a screen will play a slideshow of people the Colgate community would like to remember or cancer survivors they’d like to honor. Some pictures of Kevin will be shown during this hour. If you’re a Colgate student and would like to create a team or join a team already in existence, click here. You still have time! If you’re not a Colgate student but would still like to support the event, you can donate here.
If you have any questions about the above events, please don't hesitate to post a reply, and I'll be in touch with you shortly.
Thank you from Aunt Robin and Uncle Craig, the Colgate Relay for Life, and obviously, from Mom, Dad, Kathlin, Kevin and me. Even if you’re not able to donate, your thoughts, prayers and love have fueled us to keep fighting this.
Thursday, April 8, 2010
Holding Pattern
Thank you for the milkshake recommendations! Kevin is working his way through them. He is also getting to try a bit more food variety; he had a couple bites of soft vegetable lasagna, and he will get to try some muffins tomorrow. He has requested Dad’s chocolate chip cookies, which should be very exciting to taste after going several months without them. Dad really does make the best chocolate chip cookies. I learned everything I know about baking chocolate chip cookies from Dad!
Besides some new foods, which seem very exciting compared to puréed vegetables, there haven’t been many new developments within the past few days. Kevin has been continuing to work hard during therapy. Everyone seemed to be waiting for Kevin to get off the antibiotics, which he successfully did today. Now, his platelets need to get back above 100,000 (they’re at 97,000 today…missed the mark by a tiny bit!) before he can start chemotherapy. We’ll wait for his platelets to rise over the weekend, and the doctors will reassess the situation next week.
Yesterday, Kevin received a visit from the nurse who took care of him when he went into the ICU at Santa Clara back in February. We were extremely impressed by her dedication and hard work while she was caring for Kevin. We recently let her know that Kevin had improved enough to return to the rehab unit, so she dropped by to say hello. Kevin didn’t remember her because the drugs he was on at that point had amnesiac side effects, but the nurse was thrilled to see Kevin doing so much better than when she last saw him.
This week has been relatively calm and uneventful (especially compared to some of the horribly hectic weeks in the recent past that have bombarded us with bad news), so I'm sorry I don't have much to share! Honestly, though, calm weeks are easier on everyone involved.
Besides some new foods, which seem very exciting compared to puréed vegetables, there haven’t been many new developments within the past few days. Kevin has been continuing to work hard during therapy. Everyone seemed to be waiting for Kevin to get off the antibiotics, which he successfully did today. Now, his platelets need to get back above 100,000 (they’re at 97,000 today…missed the mark by a tiny bit!) before he can start chemotherapy. We’ll wait for his platelets to rise over the weekend, and the doctors will reassess the situation next week.
Yesterday, Kevin received a visit from the nurse who took care of him when he went into the ICU at Santa Clara back in February. We were extremely impressed by her dedication and hard work while she was caring for Kevin. We recently let her know that Kevin had improved enough to return to the rehab unit, so she dropped by to say hello. Kevin didn’t remember her because the drugs he was on at that point had amnesiac side effects, but the nurse was thrilled to see Kevin doing so much better than when she last saw him.
This week has been relatively calm and uneventful (especially compared to some of the horribly hectic weeks in the recent past that have bombarded us with bad news), so I'm sorry I don't have much to share! Honestly, though, calm weeks are easier on everyone involved.
Monday, April 5, 2010
Easter Treats
Kevin received a few well-deserved treats over the weekend. He polished off a chocolate Easter bunny, which was excellent practice for chewing and swallowing. Plus, at least from my perspective, there’s no reward quite as good as getting to eat real chocolate again!
Since Kevin is now able to eat more treats, we need milkshake recommendations in San Jose! One of the therapists raved about the banana milkshakes at Falafel Drive-In, so Kevin has enjoyed a couple of those. Any other recommendations for milkshakes in the area?
One of Kevin’s favorite weekend activities is showering. Kevin really appreciates the feel of running water, but for some reason, Valley only does the shower on the weekends. Kevin gets sponge baths the rest of the time, so don’t worry, he is still getting washed during the week! Each time Kevin has done this shower before this weekend, he’s had to lie down on a gurney. This weekend he got to sit up in a chair for his shower. That’s one step closer to showering normally!
Kevin’s chewing and swallowing coordination has improved to the point where the speech therapist now allows Kevin to receive trays of food at meal times. Kevin still receives tube feedings because it takes him more than an hour to eat a meal, and he is working so hard during the day that he needs the extra calories. However, he’s very excited to eat things like scrambled eggs, mashed potatoes and oatmeal. He can only eat food at the “pureed” level for now, since his swallowing isn’t perfect yet, and this consistency is the easiest for him to swallow. Other consistencies would be easier for Kevin to aspirate, which could lead to pneumonia and set Kevin back several weeks.
On the topic of progress, Kevin may be moving towards starting chemotherapy soon. His platelets are above 100,000, which is what they need to be to start chemo. However, he still has a couple days left on the antibiotics, which have been known to lower platelets. If he finishes the antibiotics with his platelets still over 100K, he might start chemo on Friday.
Happy belated Easter to everyone! We hope you enjoyed the holiday, especially with the extra excitement for those of us in Southern California. Thank you so much for continuing to keep Kevin in your thoughts.
Since Kevin is now able to eat more treats, we need milkshake recommendations in San Jose! One of the therapists raved about the banana milkshakes at Falafel Drive-In, so Kevin has enjoyed a couple of those. Any other recommendations for milkshakes in the area?
One of Kevin’s favorite weekend activities is showering. Kevin really appreciates the feel of running water, but for some reason, Valley only does the shower on the weekends. Kevin gets sponge baths the rest of the time, so don’t worry, he is still getting washed during the week! Each time Kevin has done this shower before this weekend, he’s had to lie down on a gurney. This weekend he got to sit up in a chair for his shower. That’s one step closer to showering normally!
Kevin’s chewing and swallowing coordination has improved to the point where the speech therapist now allows Kevin to receive trays of food at meal times. Kevin still receives tube feedings because it takes him more than an hour to eat a meal, and he is working so hard during the day that he needs the extra calories. However, he’s very excited to eat things like scrambled eggs, mashed potatoes and oatmeal. He can only eat food at the “pureed” level for now, since his swallowing isn’t perfect yet, and this consistency is the easiest for him to swallow. Other consistencies would be easier for Kevin to aspirate, which could lead to pneumonia and set Kevin back several weeks.
On the topic of progress, Kevin may be moving towards starting chemotherapy soon. His platelets are above 100,000, which is what they need to be to start chemo. However, he still has a couple days left on the antibiotics, which have been known to lower platelets. If he finishes the antibiotics with his platelets still over 100K, he might start chemo on Friday.
Happy belated Easter to everyone! We hope you enjoyed the holiday, especially with the extra excitement for those of us in Southern California. Thank you so much for continuing to keep Kevin in your thoughts.
Friday, April 2, 2010
MRI Results and Chemotherapy Plan
The results of Kevin’s MRI are neither extremely good nor bad. The tumors have shrunk a bit, but they are definitely still there. The good news is that they haven’t gotten any larger!
The appointment with the neuro oncologist yielded mixed results as well. The doctor plans to give Kevin an oral chemotherapy drug, but will not start it until a) Kevin is off the antibiotics he’s now on, and b) Kevin’s platelets in his blood rise to a decent level. Kevin has had issues with his platelets falling since December. Like the rest of his body, Kevin’s platelets are very sensitive to the medications he’s on. Some medications lower platelets while others do not. Of course, the antibiotic that Kevin is now on has a history of lowering platelet levels. He has to get off this antibiotic and let his platelets recover before his system starts getting hammered by the chemotherapy drug.
On top of the emotional experience of receiving all this news, Kevin had an extra challenge because he needed to sit in a wheelchair for most of the time. He did well, though, even despite the fact that he had therapy this morning. Kevin returned to Valley this afternoon, where he’ll focus on more speech, occupational, physical and possibly recreational therapy while he waits for his body to gear up for chemotherapy.
Thank you to everyone for continuing to keep Kevin in your thoughts. It means the world to him and to us.
The appointment with the neuro oncologist yielded mixed results as well. The doctor plans to give Kevin an oral chemotherapy drug, but will not start it until a) Kevin is off the antibiotics he’s now on, and b) Kevin’s platelets in his blood rise to a decent level. Kevin has had issues with his platelets falling since December. Like the rest of his body, Kevin’s platelets are very sensitive to the medications he’s on. Some medications lower platelets while others do not. Of course, the antibiotic that Kevin is now on has a history of lowering platelet levels. He has to get off this antibiotic and let his platelets recover before his system starts getting hammered by the chemotherapy drug.
On top of the emotional experience of receiving all this news, Kevin had an extra challenge because he needed to sit in a wheelchair for most of the time. He did well, though, even despite the fact that he had therapy this morning. Kevin returned to Valley this afternoon, where he’ll focus on more speech, occupational, physical and possibly recreational therapy while he waits for his body to gear up for chemotherapy.
Thank you to everyone for continuing to keep Kevin in your thoughts. It means the world to him and to us.
Thursday, April 1, 2010
Alterations
Within the last few days, there have been a couple changes to Kevin’s medications that have improved how he feels and functions. I mentioned in the last post that Kevin felt he might be tapering off the steroids too quickly. The next day, the doctors and the rest of us came to that conclusion as well, and Kevin’s steroid dosage has been increased slightly to keep some extra swelling down. He has felt better, and his swallowing and talking has improved since that change. The other issue was that Kevin might not have been on the correct antibiotic for the last several days. The one he was on has some neurological side effects, which are exactly the side effects we want to avoid while he is already so neurologically compromised. Once Dad realized this, the doctors were happy to work with him to smooth this problem out.
After these changes, Kevin’s stubborn attitude has returned in full force, which we take to mean that he’s feeling much better. It takes a lot of energy for Kevin to stand up for himself and tell people that they’re pushing him too hard or that he’s reached his tiredness limit. A healthy Kevin told to work this hard would definitely put up a fight, so we’re glad he’s feeling enough like himself to do that.
The next couple events that we’re all holding our breath for are Kevin’s MRI and appointment with his neuro oncologist tomorrow. It will have been four weeks since he finished radiation, so it’s time to take an MRI and see how the tumors have responded to treatment. Tomorrow, Kevin will also receive a chemotherapy plan from his neuro oncologist. Of course, I’ll post the results of both these big events as soon as I hear anything. We’re preparing ourselves for just about any news. Unfortunately, we’ve been surprised with bad news too many times during this process. We have to walk the fine line of preparing for the possibility of bad news while desperately hoping that things are dramatically improving.
To end on a better note: today, I got a call from Mom, and for the first time since December, she passed the phone to Kevin. Today was my 25th birthday, and Kevin sang me “Happy Birthday.” Mom said he had been practicing the song for the last couple weeks. It was amazing to listen to Kevin sing, much less enunciate the “s” in my name (which he hadn’t been able to do before I left). This moment of Kevin’s dedication, practice and love is what I’ll be thinking about tomorrow as Kevin goes into his MRI and neuro oncologist appointment.
After these changes, Kevin’s stubborn attitude has returned in full force, which we take to mean that he’s feeling much better. It takes a lot of energy for Kevin to stand up for himself and tell people that they’re pushing him too hard or that he’s reached his tiredness limit. A healthy Kevin told to work this hard would definitely put up a fight, so we’re glad he’s feeling enough like himself to do that.
The next couple events that we’re all holding our breath for are Kevin’s MRI and appointment with his neuro oncologist tomorrow. It will have been four weeks since he finished radiation, so it’s time to take an MRI and see how the tumors have responded to treatment. Tomorrow, Kevin will also receive a chemotherapy plan from his neuro oncologist. Of course, I’ll post the results of both these big events as soon as I hear anything. We’re preparing ourselves for just about any news. Unfortunately, we’ve been surprised with bad news too many times during this process. We have to walk the fine line of preparing for the possibility of bad news while desperately hoping that things are dramatically improving.
To end on a better note: today, I got a call from Mom, and for the first time since December, she passed the phone to Kevin. Today was my 25th birthday, and Kevin sang me “Happy Birthday.” Mom said he had been practicing the song for the last couple weeks. It was amazing to listen to Kevin sing, much less enunciate the “s” in my name (which he hadn’t been able to do before I left). This moment of Kevin’s dedication, practice and love is what I’ll be thinking about tomorrow as Kevin goes into his MRI and neuro oncologist appointment.
Monday, March 29, 2010
Week 1.5 at Valley
Santa Clara Valley is doing its job and tiring Kevin out! He has been working extremely hard, and he’s been rewarded with chocolate puddings and lollipops. However, even these rewards are tough work; when you think about it, Dum Dums are good exercise for your tongue, mouth and swallowing coordination.
Kevin’s attention span has also lengthened considerably. This weekend, he was able to start and finish two movies: Super Troopers and Snatch. Kevin practiced speaking by explaining Snatch to Kathlin, who hadn’t seen the movie enough times to get past Brad Pitt’s speech and understand what’s really going on. Today, Kevin felt up to watching about half of a Colbert Report. He’s no longer afraid to laugh!
Kevin has some great goals driving him forward. Besides wanting to eat again, he also desperately wants to get back into a normal wheelchair. For the last several weeks, he has been in special wheelchairs that have high backs, head support, recliners and other fancy gizmos that are supposed to help. In reality, these additions make Kevin more uncomfortable. Kevin has needed these chairs because his neck muscles were so weak that he couldn’t support the weight of his head. However, he has been working very hard on sitting up straight and holding his head up by himself. He’d also like to be able to propel himself, and he can’t easily do that in the wheelchair he has now. We hope the therapists will allow him to move to a regular wheelchair sometime soon so he can be more comfortable and work towards gaining more independence by wheeling himself around.
I often slip into trying to make the situation sound better than it really is, so this time I’m forcing myself to include the negative bits of news we’ve recently received. Kevin has been started on some antibiotics for a possible urinary tract infection. This has been a repeating issue in the past few months, and we’d just like it to get under control and go away (such an easy thing to say, such a difficult thing to do).
Also, today Kevin started fearing that he was weaning off his steroids too quickly. He has been on steroids to reduce the swelling around his tumors. Any extra swelling in his brain stem hits new nerves and wreaks havoc on his motor skills, so the steroids have been trying to keep swelling to a minimum. This evening, Kevin had a hard time swallowing and felt that his coordination was off, so he was afraid that the swelling was increasing. We alerted the doctor to this, and she is keeping a close eye on Kevin’s symptoms. Kevin has gone through two other unsuccessful attempts at weaning off steroids over the past six months. Each time he reached a low dose, the swelling increased and disaster struck, so he is justifiably gun shy about actually getting off the steroids. He definitely wants to be rid of them because they really mess with his mood, but he doesn’t want yet another setback.
*Disclaimer*
This is my first long-distance post from San Diego. I am no longer a direct eyewitness of Kevin’s journey. I have returned to UCSD for spring quarter, but I will be making frequent trips north to see Kevin, Kathlin and my parents. I will check in with them each day to hear updates and stories, and I will continue to relay the news to you all via the blog. Thank you for keeping up with Kevin’s progress!
Kevin’s attention span has also lengthened considerably. This weekend, he was able to start and finish two movies: Super Troopers and Snatch. Kevin practiced speaking by explaining Snatch to Kathlin, who hadn’t seen the movie enough times to get past Brad Pitt’s speech and understand what’s really going on. Today, Kevin felt up to watching about half of a Colbert Report. He’s no longer afraid to laugh!
Kevin has some great goals driving him forward. Besides wanting to eat again, he also desperately wants to get back into a normal wheelchair. For the last several weeks, he has been in special wheelchairs that have high backs, head support, recliners and other fancy gizmos that are supposed to help. In reality, these additions make Kevin more uncomfortable. Kevin has needed these chairs because his neck muscles were so weak that he couldn’t support the weight of his head. However, he has been working very hard on sitting up straight and holding his head up by himself. He’d also like to be able to propel himself, and he can’t easily do that in the wheelchair he has now. We hope the therapists will allow him to move to a regular wheelchair sometime soon so he can be more comfortable and work towards gaining more independence by wheeling himself around.
I often slip into trying to make the situation sound better than it really is, so this time I’m forcing myself to include the negative bits of news we’ve recently received. Kevin has been started on some antibiotics for a possible urinary tract infection. This has been a repeating issue in the past few months, and we’d just like it to get under control and go away (such an easy thing to say, such a difficult thing to do).
Also, today Kevin started fearing that he was weaning off his steroids too quickly. He has been on steroids to reduce the swelling around his tumors. Any extra swelling in his brain stem hits new nerves and wreaks havoc on his motor skills, so the steroids have been trying to keep swelling to a minimum. This evening, Kevin had a hard time swallowing and felt that his coordination was off, so he was afraid that the swelling was increasing. We alerted the doctor to this, and she is keeping a close eye on Kevin’s symptoms. Kevin has gone through two other unsuccessful attempts at weaning off steroids over the past six months. Each time he reached a low dose, the swelling increased and disaster struck, so he is justifiably gun shy about actually getting off the steroids. He definitely wants to be rid of them because they really mess with his mood, but he doesn’t want yet another setback.
*Disclaimer*
This is my first long-distance post from San Diego. I am no longer a direct eyewitness of Kevin’s journey. I have returned to UCSD for spring quarter, but I will be making frequent trips north to see Kevin, Kathlin and my parents. I will check in with them each day to hear updates and stories, and I will continue to relay the news to you all via the blog. Thank you for keeping up with Kevin’s progress!
Friday, March 26, 2010
Pep Talk
Two days ago, Kevin was exhausted for the entire day because he got off to a tiring start. First thing in the morning, he had to do the procedure that tested the mechanisms of his swallowing. He sat up in a wheelchair for about an hour and a half, which really tired him out. For the remainder of the day, Kevin didn’t have much energy, so he couldn’t participate much during therapy sessions.
Kevin’s attending physician spoke with the therapists about that day, and they had reported on his low energy and little participation. True, there was a good reason for Kevin’s exhaustion, but it provided a good teaching moment. Armed with the therapists’ reports, the doctor gave Kevin a threatening, but helpful, pep talk yesterday morning. Kevin’s doctor told him that if he’s not able to participate, there’s no point in him being here. Also, if he stops progressing, the doctors and therapists will decide that he has reached his potential for improvement, and they’ll send him home.
This talk succeeded in getting Kevin’s attention and motivating him. He knows that if he works for it, he will be able to improve great amounts. He wants to prove that he hasn’t plateaued in recovering his abilities. His long-term goals are to be able to walk unassisted and to be as independent as possible. Kevin believes he can eventually accomplish these goals, but he needs to make the therapists believe in him as well.
Yesterday, all his therapists were blown away by what he could do. He worked extremely hard in physical and occupational therapy, and he was able to eat most of a Wendy’s Frosty during speech therapy. He tapped into a deep source of energy to prove that he is willing to do the work it takes to be here. Plus, Kevin's stubbornness comes in handy; he won't let anyone tell him what he is or is not capable of! Kevin showed he has the strength and motivation to work towards goals he sets for himself, and every day more people believe in his potential.
Kevin’s attending physician spoke with the therapists about that day, and they had reported on his low energy and little participation. True, there was a good reason for Kevin’s exhaustion, but it provided a good teaching moment. Armed with the therapists’ reports, the doctor gave Kevin a threatening, but helpful, pep talk yesterday morning. Kevin’s doctor told him that if he’s not able to participate, there’s no point in him being here. Also, if he stops progressing, the doctors and therapists will decide that he has reached his potential for improvement, and they’ll send him home.
This talk succeeded in getting Kevin’s attention and motivating him. He knows that if he works for it, he will be able to improve great amounts. He wants to prove that he hasn’t plateaued in recovering his abilities. His long-term goals are to be able to walk unassisted and to be as independent as possible. Kevin believes he can eventually accomplish these goals, but he needs to make the therapists believe in him as well.
Yesterday, all his therapists were blown away by what he could do. He worked extremely hard in physical and occupational therapy, and he was able to eat most of a Wendy’s Frosty during speech therapy. He tapped into a deep source of energy to prove that he is willing to do the work it takes to be here. Plus, Kevin's stubbornness comes in handy; he won't let anyone tell him what he is or is not capable of! Kevin showed he has the strength and motivation to work towards goals he sets for himself, and every day more people believe in his potential.
Wednesday, March 24, 2010
Old Self
Kevin is behaving more like his normal self every day. His movements are less exaggerated and more controlled. Something as simple as nodding or shaking his head now looks natural, whereas it used to be obvious how much effort this action took. Every once in a while, a nonchalant “yeah” will pop out of Kevin’s mouth and sound completely like his normal, healthy, relaxed voice.
Also returning is Kevin’s desire to do things that he enjoys, and this is making him feel more like himself. Over the past few days, he has been watching episodes of Top Gear, a British TV show about cars that is actually extremely funny, even for people not all that enthralled with cars. Kevin has not wanted to watch good comedies for the past few months because if he laughs too hard, he often coughs. This is why he says Stephen Colbert is “too funny;” Kevin almost immediately starts laughing himself into a coughing fit. However, he might almost be ready for the Colbert Report again, because he laughed a fair amount at Top Gear and didn’t have any coughing problems!
Kevin’s favorite therapy is speech. Why? That’s when he gets to eat. It’s therefore not surprising that he’s progressing the most quickly with speech therapy. He wants to eat so badly that he’s working very hard to improve as fast as he can. Yesterday, he got a few bites of yogurt, mashed potatoes, applesauce AND chocolate pudding! He is doing a test today to make sure that all of his swallowing mechanisms are working properly. If all looks good, he will be able to eat more often, and he’ll move faster towards trying a larger variety of food. Until he gains enough strength and endurance to eat three meals a day, Kevin will continue to receive tube feeds through his “peg” to ensure that he gets plenty of calories and nutrition.
Thank you again to everyone for your wonderful food, wine, juice, pet sitting, housing, cards, quilts, hats, audiobooks, music, hugs, prayers and good wishes that you're sending Kevin and the family. You’ve been providing amazing amounts of sustenance, entertainment, hope and support for us. We certainly could not have managed this without you.
Also returning is Kevin’s desire to do things that he enjoys, and this is making him feel more like himself. Over the past few days, he has been watching episodes of Top Gear, a British TV show about cars that is actually extremely funny, even for people not all that enthralled with cars. Kevin has not wanted to watch good comedies for the past few months because if he laughs too hard, he often coughs. This is why he says Stephen Colbert is “too funny;” Kevin almost immediately starts laughing himself into a coughing fit. However, he might almost be ready for the Colbert Report again, because he laughed a fair amount at Top Gear and didn’t have any coughing problems!
Kevin’s favorite therapy is speech. Why? That’s when he gets to eat. It’s therefore not surprising that he’s progressing the most quickly with speech therapy. He wants to eat so badly that he’s working very hard to improve as fast as he can. Yesterday, he got a few bites of yogurt, mashed potatoes, applesauce AND chocolate pudding! He is doing a test today to make sure that all of his swallowing mechanisms are working properly. If all looks good, he will be able to eat more often, and he’ll move faster towards trying a larger variety of food. Until he gains enough strength and endurance to eat three meals a day, Kevin will continue to receive tube feeds through his “peg” to ensure that he gets plenty of calories and nutrition.
Thank you again to everyone for your wonderful food, wine, juice, pet sitting, housing, cards, quilts, hats, audiobooks, music, hugs, prayers and good wishes that you're sending Kevin and the family. You’ve been providing amazing amounts of sustenance, entertainment, hope and support for us. We certainly could not have managed this without you.
Monday, March 22, 2010
A Taste of Chocolate
Since the blood clot incident, Kevin has had several positive experiences at Santa Clara. He is starting to do things on his own, such as call the nurses himself and tell them what he needs. Up until this point, we would try to figure out what was wrong, call the nurse and explain the problem. For Kevin to do this himself is one important way for him to regain independence.
Kevin is also growing more comfortable with using his voice, now that he has the trache out. Last night, Kathlin put on some music, and Kevin started singing along to the Red Hot Chili Peppers. Back when Kevin was first diagnosed with cancer, he didn’t want to hear any music he’s familiar with because it brought back too many memories and made him depressed. Now, his mental state has improved to the point that he doesn’t just want to listen to the music he knows and likes, he also wants to sing along!
This shifting attitude—of no longer being afraid of things that might bring back good memories—is also playing out in the items that Kevin wants to decorate his room. We’ve had the “WE MISS YOU KEVIN” poster from the Colgate Geology department on his wall for a couple weeks now, and the other day, he asked us to re-read out loud all the things people had written. He even started reading one message himself, so his eyesight is dramatically improving along with his attitude.
Kevin received a new treat today from the speech therapist. Kevin tried to swallow applesauce a few days ago, and today he got to try swallowing chocolate pudding. It must feel wonderful to taste chocolate after tasting nothing for weeks!
We truly appreciate everyone sending your love and support to Kevin. Please keep posting your wonderful, inspiring messages to him; he might soon be up for reading them himself!
Kevin is also growing more comfortable with using his voice, now that he has the trache out. Last night, Kathlin put on some music, and Kevin started singing along to the Red Hot Chili Peppers. Back when Kevin was first diagnosed with cancer, he didn’t want to hear any music he’s familiar with because it brought back too many memories and made him depressed. Now, his mental state has improved to the point that he doesn’t just want to listen to the music he knows and likes, he also wants to sing along!
This shifting attitude—of no longer being afraid of things that might bring back good memories—is also playing out in the items that Kevin wants to decorate his room. We’ve had the “WE MISS YOU KEVIN” poster from the Colgate Geology department on his wall for a couple weeks now, and the other day, he asked us to re-read out loud all the things people had written. He even started reading one message himself, so his eyesight is dramatically improving along with his attitude.
Kevin received a new treat today from the speech therapist. Kevin tried to swallow applesauce a few days ago, and today he got to try swallowing chocolate pudding. It must feel wonderful to taste chocolate after tasting nothing for weeks!
We truly appreciate everyone sending your love and support to Kevin. Please keep posting your wonderful, inspiring messages to him; he might soon be up for reading them himself!
Saturday, March 20, 2010
Another Bump
On Kevin’s first morning at Santa Clara Valley, he received routine ultrasounds on his legs to check for blood clots. This is a procedure they do to every incoming patient—and for good reason. They found a partial clot in each of Kevin’s legs. These clots were caused by Kevin’s immobility over the past several weeks. Partial clots are nearly impossible to know about without an ultrasound because they produce no outward signs on the skin. Partial clots can also move to different parts of the body like the lungs or heart. The standard procedure for this problem is an interventional radiology procedure that places temporary filters in Kevin’s veins to prevent the clots from moving anywhere more dangerous.
A small piece of family history: Dad spent a few years at Santa Clara Valley during his radiology training in the early 1980s. One of the interventional radiologists that Dad trained under is still here. As soon as Dad found out the results of the ultrasound, he went down to the radiology department, talked with this doctor and made sure Kevin would get the procedure done that afternoon. Plus, it was wonderful to have a doctor do this who Dad trusts. The procedure went well, and Kevin spent the afternoon and evening sleeping it off. He will start therapy on Saturday.
To cast this in the most positive light, the move down to Santa Clara might have saved Kevin’s life. If Kevin had stayed at Stanford, we might not have noticed the clots, because they don’t do routine ultrasounds of patients’ legs. With Kevin’s increasing movement in the physical therapy sessions at Stanford, the clots might have moved to his lungs, heart or brain, which would have caused major problems. So it’s wonderful that they found the clots and took care of them. Still, we’re extremely frustrated that—again—Kevin had to go through yet one more medical problem as soon as he progressed a tiny bit.
A small piece of family history: Dad spent a few years at Santa Clara Valley during his radiology training in the early 1980s. One of the interventional radiologists that Dad trained under is still here. As soon as Dad found out the results of the ultrasound, he went down to the radiology department, talked with this doctor and made sure Kevin would get the procedure done that afternoon. Plus, it was wonderful to have a doctor do this who Dad trusts. The procedure went well, and Kevin spent the afternoon and evening sleeping it off. He will start therapy on Saturday.
To cast this in the most positive light, the move down to Santa Clara might have saved Kevin’s life. If Kevin had stayed at Stanford, we might not have noticed the clots, because they don’t do routine ultrasounds of patients’ legs. With Kevin’s increasing movement in the physical therapy sessions at Stanford, the clots might have moved to his lungs, heart or brain, which would have caused major problems. So it’s wonderful that they found the clots and took care of them. Still, we’re extremely frustrated that—again—Kevin had to go through yet one more medical problem as soon as he progressed a tiny bit.
