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.
