Thanks to everyone for exploring your contacts and sending us so many ideas. Unfortunately, Kevin isn’t able to travel anywhere for appointments because he is so immobile and fragile, and we’re finding that he qualifies for virtually no clinical trials because of how ill he is. Most clinical trials have requirements regarding mobility, bloodwork, having been off chemotherapy for a certain amount of time, and so on. The tragic thing is that today's cancer treatment and support network hasn’t yet evolved to deal with such an aggressive medulloblastoma that essentially paralyzes patients within a few weeks.
The most recent chemotherapy that Kevin tried did not sit well with his GI tract; acid reflux, indigestion and heartburn made him very uncomfortable for the past week. Kevin’s doctors decided to switch him to yet another chemotherapy that we will attempt to administer from home. Today was the first day we gave him this agent, and we hope it won’t upset his digestive system as much as the previous chemo.
Today we also made the switch to Hospice. The switch was a bit more hectic than we had anticipated, for they came into the house to switch out hospital beds, wheelchairs and other equipment. After adding the Hospice transition and the new chemotherapy onto the general duties of taking care of Kevin, everyone is exhausted.
Kevin has remained in bed most every day for the past several days, and he is still unable to speak. He has been listening to a lot of audiobooks, and he wants to spend nearly every waking moment holding Kathlin’s hand. She is an incredible source of strength and support for Kevin. Kathlin’s mom has been out here this week, and she has also been a huge help.
Again, thank you to you all for your research and love. Keep sending Kevin your best wishes and prayers.
Wednesday, September 29, 2010
Friday, September 24, 2010
Note from Kathlin
Kevin has been relatively stable over the past couple of days. On Thursday, we had people from palliative care come over to talk with Kevin and the family. This doesn't mean we've given up on the situation and are only preparing for the worst-case scenario. We still plan on fighting. However, these experts helped us talk through some important issues. Although understandably emotional, the talk went well. We've taken a few measures to make Kevin more comfortable, including anxiety medication and tools to help manage his secretions if his swallowing becomes even more impaired.
I mentioned that we all still want to fight. While we're reaching the bottom of the barrel of "conventional" treatments, we're starting to explore alternative and experimental options. Below is a message from Kathlin, asking about any connections you may have to such options. It was originally going to be an email, so she gives a good synopsis of the history of Kevin's situation. If you have any connections or ideas for less conventional treatment options, please leave a message on the blog or email us at KevinWilliamsBlog@gmail.com. Thank you all for your help, love and support.
Hello Everyone,
My name is Kathlin Ramsdell. My fiancé, Kevin Williams (both Colgate class of 2010), has been fighting a battle against an aggressive brain tumor since last fall. After seeming to respond to therapy, his tumor is now progressing again. He is at home with his family and me in northern California and is very disabled (unable to speak or move much at all). His oncologists have just started him on a different chemotherapy that is supposed to help, but only in the short term. The type of tumor he has is medulloblastoma/PNET and it was never resected (it is in his brainstem where they can't operate). If you need more detailed information about his clinical history in order to help, please let us know.
Kevin and his family want to try nearly anything (experimental drugs, for example) to prolong his life, give him a better quality of life and, ideally, to treat the tumor. Does anyone know or have ties to people in the medical field, pharmaceutical companies, or anyone that may be experimenting with brain tumor or cancer treatments? Compassionate use of a drug or therapy that we could administer at our local hospital or at home would be ideal, but Kevin would also want to participate in a clinical trial if he were eligible. I would greatly appreciate any information or contacts you may have. Kevin wants to fight for as long as possible and we are trying to give him that chance.
Sincerely,
Kathlin Ramsdell
kramsdell@students.colgate.edu
I mentioned that we all still want to fight. While we're reaching the bottom of the barrel of "conventional" treatments, we're starting to explore alternative and experimental options. Below is a message from Kathlin, asking about any connections you may have to such options. It was originally going to be an email, so she gives a good synopsis of the history of Kevin's situation. If you have any connections or ideas for less conventional treatment options, please leave a message on the blog or email us at KevinWilliamsBlog@gmail.com. Thank you all for your help, love and support.
Hello Everyone,
My name is Kathlin Ramsdell. My fiancé, Kevin Williams (both Colgate class of 2010), has been fighting a battle against an aggressive brain tumor since last fall. After seeming to respond to therapy, his tumor is now progressing again. He is at home with his family and me in northern California and is very disabled (unable to speak or move much at all). His oncologists have just started him on a different chemotherapy that is supposed to help, but only in the short term. The type of tumor he has is medulloblastoma/PNET and it was never resected (it is in his brainstem where they can't operate). If you need more detailed information about his clinical history in order to help, please let us know.
Kevin and his family want to try nearly anything (experimental drugs, for example) to prolong his life, give him a better quality of life and, ideally, to treat the tumor. Does anyone know or have ties to people in the medical field, pharmaceutical companies, or anyone that may be experimenting with brain tumor or cancer treatments? Compassionate use of a drug or therapy that we could administer at our local hospital or at home would be ideal, but Kevin would also want to participate in a clinical trial if he were eligible. I would greatly appreciate any information or contacts you may have. Kevin wants to fight for as long as possible and we are trying to give him that chance.
Sincerely,
Kathlin Ramsdell
kramsdell@students.colgate.edu
Wednesday, September 22, 2010
Another Chemotherapy
With the recent news of further tumor growth in mind, Kevin’s chemotherapy schedule has increased from once every two weeks to once every week. This additional chemotherapy, however, is seen more as a temporary “stop-gap;” it is not something that will work over a long period of time. We are hoping this will buy us some more time to research other possible options. The neuro oncologists seem to be running out of ideas for treatments, which is very disheartening. However, we’ll take anything that may buy Kevin a bit more time.
Some of you may be thinking about the fact that Kevin’s actual diagnosis was “better” than the original. True, medulloblastomas are more successfully treated than glioblasotmas. However, we have heard from other neuro oncologists that inoperable medulloblastomas, especially in pediatric cases (which Kevin basically is) tend to act like glioblastomas. That is, chemotherapy and radiation treatments often don’t do much to kill the tumor. It breaks my heart to report it, but this is exactly what we’re seeing in Kevin’s case.
We have all been focusing on living day by day and appreciating the little things that we can. Kevin still can’t talk and has been using the letter board to communicate, but he has watched the webcam and heard the voices of a few of his closest friends who now live far away. He’s also been able to eat some milkshakes and other pureed foods that he’s been craving. He assigned the Butterscotch Swirl milkshake from Marianne’s 4 ½ stars—I guess he really enjoyed that one! Kevin also requested a New York style cheesecake and homemade Almond Roca from our very culinarily gifted neighbor. To our surprise, he was able to chew and swallow small pieces of Almond Roca. Immense motivation can produce some stellar results!
Thank you all for hanging in there with us throughout this rollercoaster journey. Maybe it’s more of a haunted house ride with a track that winds through the dark and takes giant drops, always catching us by surprise. We have desperately needed your support, and we still need it now. Please send Kevin good wishes and prayers. Thank you so much for your love and support.
Some of you may be thinking about the fact that Kevin’s actual diagnosis was “better” than the original. True, medulloblastomas are more successfully treated than glioblasotmas. However, we have heard from other neuro oncologists that inoperable medulloblastomas, especially in pediatric cases (which Kevin basically is) tend to act like glioblastomas. That is, chemotherapy and radiation treatments often don’t do much to kill the tumor. It breaks my heart to report it, but this is exactly what we’re seeing in Kevin’s case.
We have all been focusing on living day by day and appreciating the little things that we can. Kevin still can’t talk and has been using the letter board to communicate, but he has watched the webcam and heard the voices of a few of his closest friends who now live far away. He’s also been able to eat some milkshakes and other pureed foods that he’s been craving. He assigned the Butterscotch Swirl milkshake from Marianne’s 4 ½ stars—I guess he really enjoyed that one! Kevin also requested a New York style cheesecake and homemade Almond Roca from our very culinarily gifted neighbor. To our surprise, he was able to chew and swallow small pieces of Almond Roca. Immense motivation can produce some stellar results!
Thank you all for hanging in there with us throughout this rollercoaster journey. Maybe it’s more of a haunted house ride with a track that winds through the dark and takes giant drops, always catching us by surprise. We have desperately needed your support, and we still need it now. Please send Kevin good wishes and prayers. Thank you so much for your love and support.
Saturday, September 18, 2010
Tough News from Stanford
The Stanford medical team that has been working with Kevin’s case over the past several months got back to us Friday with a ruling on the latest MRI results. They had presented Kevin’s case at “tumor board,” a weekly meeting of Stanford oncology physicians, and had decided that the MRI shows tumor progression. We did not want to hear this news, and we’ve all been pretty upset by it. It’s heartbreaking to watch Kevin struggle after he’s been working so hard to improve. This is another steep drop in the rollercoaster of Kevin’s illness, and we’re trying to readjust to the new reality of the situation.
We’re not yet sure how this news will affect the treatment Kevin is receiving. The chemotherapy will most likely increase, and there may be a change in medications used, but some physicians need to talk and decisions need to be made before we know anything for sure. We haven’t yet exhausted the options for treatment, but this provides little comfort when we must progress to treatments that are riskier or have historically had lower success rates.
Kevin is extremely depressed by this news, but he was having a rough day yesterday even before receiving the bad news. He was exhausted throughout the day. He had a difficult time with speech, swallowing and throat-clearing, which may be due to a number of reasons ranging from exhaustion to the tumor pressing against nerves that control those functions.
Despite all the bad news, Kevin has been able to find some bit of pleasure in tasting certain foods; he has started requesting numerous “junk foods” that he is craving. He is not able to eat solid food at this point in time, but we have been pureeing things to give him the tastes he craves. In the last few days, he's gotten to taste an Its-Its ice cream sandwich, breakfast burritos and a KFC meal. Kathlin has been amazingly loving and patient while feeding him; even though we’re only feeding him purées, he takes a very long time, and a lot of coaching, to get through a few bites. For the millionth time, we are eternally thankful for Kathlin and the love and support she’s given to Kevin and our family.
Thank you to all of you for keeping Kevin in your thoughts and prayers. Please send him a bit of extra hope during this rough time.
We’re not yet sure how this news will affect the treatment Kevin is receiving. The chemotherapy will most likely increase, and there may be a change in medications used, but some physicians need to talk and decisions need to be made before we know anything for sure. We haven’t yet exhausted the options for treatment, but this provides little comfort when we must progress to treatments that are riskier or have historically had lower success rates.
Kevin is extremely depressed by this news, but he was having a rough day yesterday even before receiving the bad news. He was exhausted throughout the day. He had a difficult time with speech, swallowing and throat-clearing, which may be due to a number of reasons ranging from exhaustion to the tumor pressing against nerves that control those functions.
Despite all the bad news, Kevin has been able to find some bit of pleasure in tasting certain foods; he has started requesting numerous “junk foods” that he is craving. He is not able to eat solid food at this point in time, but we have been pureeing things to give him the tastes he craves. In the last few days, he's gotten to taste an Its-Its ice cream sandwich, breakfast burritos and a KFC meal. Kathlin has been amazingly loving and patient while feeding him; even though we’re only feeding him purées, he takes a very long time, and a lot of coaching, to get through a few bites. For the millionth time, we are eternally thankful for Kathlin and the love and support she’s given to Kevin and our family.
Thank you to all of you for keeping Kevin in your thoughts and prayers. Please send him a bit of extra hope during this rough time.
Wednesday, September 15, 2010
A Possible Turnaround?
The difference between yesterday and today should hopefully be a sign of things to come. Yesterday, Kevin went into the hospital for chemotherapy. The local oncologist didn’t like the way Kevin looked; it was the first time this doctor had actually seen Kevin since the downturn a couple weeks ago. Of course, we all knew Kevin didn’t look great, but the reaffirmation of that fact can echo around an already tense atmosphere and severely bum everyone out. Yesterday, therefore, was another downer. Kevin was exhausted and didn’t feel up to doing much, and everyone was pretty depressed.
Apparently, the jury is still out on the topic of the tumor growth (sorry for misleading you in the last post, that’s what we thought the situation was at the time). There are some radiologists who think the tumor has slightly grown since the previous MRI, but there are some who think the change is negligible. However, even if the tumor appears slightly larger on this MRI, there is the possibility that the “growth” is due to swelling that would have been suppressed by steroids, had Kevin remained on a steady dosage of steroids over the past few weeks. Our attempts to get him off the steroids may have caused this swelling to flare up, which may appear as tumor enlargement on the MRI. I’ll update you all when we have a more definitive answer as to what the MRI actually shows… but for now, know that the tumor is about the same size, but we may adjust the chemotherapy regimen if it is decided that the tumor is growing slightly.
Yesterday, we started an even larger dosage of IV and oral steroids to see if that could boost Kevin’s energy. So far, the results seem to be positive. Kevin was more energetic today, and he even did a few exercises at home. When Mom asked if he wanted her to cancel tomorrow’s occupational therapy appointment, he said not to cancel yet, but to see how he feels in the morning. I think that answer shows that he’s feeling a bit better, both physically and mentally. We hope this trend continues so he can resume therapy, return to eating and reclaim his fighting spirit.
Apparently, the jury is still out on the topic of the tumor growth (sorry for misleading you in the last post, that’s what we thought the situation was at the time). There are some radiologists who think the tumor has slightly grown since the previous MRI, but there are some who think the change is negligible. However, even if the tumor appears slightly larger on this MRI, there is the possibility that the “growth” is due to swelling that would have been suppressed by steroids, had Kevin remained on a steady dosage of steroids over the past few weeks. Our attempts to get him off the steroids may have caused this swelling to flare up, which may appear as tumor enlargement on the MRI. I’ll update you all when we have a more definitive answer as to what the MRI actually shows… but for now, know that the tumor is about the same size, but we may adjust the chemotherapy regimen if it is decided that the tumor is growing slightly.
Yesterday, we started an even larger dosage of IV and oral steroids to see if that could boost Kevin’s energy. So far, the results seem to be positive. Kevin was more energetic today, and he even did a few exercises at home. When Mom asked if he wanted her to cancel tomorrow’s occupational therapy appointment, he said not to cancel yet, but to see how he feels in the morning. I think that answer shows that he’s feeling a bit better, both physically and mentally. We hope this trend continues so he can resume therapy, return to eating and reclaim his fighting spirit.
Monday, September 13, 2010
Another MRI
Despite an increased steroid dosage, Kevin’s symptoms haven’t improved much over the past few days. This has caused our stress level to rise and the questions to grow exponentially. We decided that the unknown was more harmful than the known; we were so worried about what the tumor was doing that it was difficult to brainstorm new ideas, questions and solutions to the problem at hand. To give us some answers, we took Kevin in for one more MRI today.
The good news: the tumor hasn’t grown much at all over the past five weeks. The mass of the tumor is the same size, but there is a bit more swelling in one area. This may be swelling from an agitated area that arose once the steroid levels got too low—the steroids could no longer act as an anti-inflammatory to that certain spot. This swelling is most likely affecting Kevin’s control of his left side. We hope this swelling will decrease with longer exposure to a higher dosage of steroids.
The MRI answered a lot of questions, and quelled a few of our main fears. We were afraid that this setback was due to tumor growth, and today we learned that is not the case. Therefore, our best guess is still critically low levels of steroids. We have been giving Kevin larger dosages for about 5 days. His stomach has been upset for many of those days, so the steroids might not have been in his system long enough to be fully absorbed. Therefore, even though we’ve been giving him more oral steroids, he may still be suffering from a lack of steroids. Go figure. We will continue to give him the increased dosage of oral steroids, but we may tinker with medications and diet to help his upset stomach and steroid absorption.
In sum, despite the good news today, our minds are still working overtime to figure out what’s wrong and what we can do to fix it. Thank you for keeping Kevin in your thoughts!
The good news: the tumor hasn’t grown much at all over the past five weeks. The mass of the tumor is the same size, but there is a bit more swelling in one area. This may be swelling from an agitated area that arose once the steroid levels got too low—the steroids could no longer act as an anti-inflammatory to that certain spot. This swelling is most likely affecting Kevin’s control of his left side. We hope this swelling will decrease with longer exposure to a higher dosage of steroids.
The MRI answered a lot of questions, and quelled a few of our main fears. We were afraid that this setback was due to tumor growth, and today we learned that is not the case. Therefore, our best guess is still critically low levels of steroids. We have been giving Kevin larger dosages for about 5 days. His stomach has been upset for many of those days, so the steroids might not have been in his system long enough to be fully absorbed. Therefore, even though we’ve been giving him more oral steroids, he may still be suffering from a lack of steroids. Go figure. We will continue to give him the increased dosage of oral steroids, but we may tinker with medications and diet to help his upset stomach and steroid absorption.
In sum, despite the good news today, our minds are still working overtime to figure out what’s wrong and what we can do to fix it. Thank you for keeping Kevin in your thoughts!
Thursday, September 9, 2010
Continued Exhaustion
Kevin’s energy level unfortunately has not increased since my last post. He is still utterly, totally and completely wiped out. Thankfully, his swallowing and coughing reflexes have kicked back in, so we are no longer too concerned about him aspirating something. However, there hasn’t been much of anything in his mouth to aspirate because he hasn’t had the energy to eat or drink. Thankfully, Kevin still has his “tummy tube” in, so he’s been receiving nutrition through that for the past few days. Kevin loves food, so when he’s too tired to eat, that says a lot.
Yesterday, we decided to give Kevin a larger dose of oral steroids to hopefully reverse this downward trend. It’s now been about 24 hours since his first larger dosage, and it is still a bit soon to see the effects of this dosage on his energy level. We are trying to wait for enough time to go by so we can better grasp the situation. The atmosphere here is so tense that it seems like a week since we started him on a larger dosage of steroids, and it was only yesterday afternoon! We’re extremely eager for Kevin to turn the corner and start trending upwards, so every hour that Kevin is lethargic seems many times longer.
The past two days, Kevin has been too tired to attend outpatient therapy. This is the first time he’s missed any outpatient therapy since he started in July. That shows both how fantastic things had been going for a couple months and how poorly he feels right now.
The next couple of days will be very telling in terms of how Kevin responds to the extra steroids. We hope that his energy will bounce back sometime soon so that his muscles don’t atrophy too much during this setback. Plus, it will be wonderful when he feels up to eating, exercising and talking once again.
We are all being consumed by the same worry that’s sitting in the back of our minds and chewing away at our sanity, but we’re all afraid to shine light on that worry and voice it aloud. Many medical clues point to the conclusion that this setback is most likely due to the steroid issue. Yet, we are constantly threatened by the possibility of the tumor growing larger. We dislike discussing this possibility, and we prefer to leave it in the dark corners of our minds. We’ve had to bring this idea out into the open during the last couple of days, which is probably why we are all so tense. However, even with the possibility of tumor growth now openly on the table, Kevin’s symptoms still point to critically low levels of steroids. We’re desperately hoping his symptoms over the next couple days point to this conclusion as well.
Thank you for keeping Kevin in your thoughts all these months. Right now he needs a bit of extra hope, prayers and good vibes sent to him through the atmosphere, so please keep up the support!
Yesterday, we decided to give Kevin a larger dose of oral steroids to hopefully reverse this downward trend. It’s now been about 24 hours since his first larger dosage, and it is still a bit soon to see the effects of this dosage on his energy level. We are trying to wait for enough time to go by so we can better grasp the situation. The atmosphere here is so tense that it seems like a week since we started him on a larger dosage of steroids, and it was only yesterday afternoon! We’re extremely eager for Kevin to turn the corner and start trending upwards, so every hour that Kevin is lethargic seems many times longer.
The past two days, Kevin has been too tired to attend outpatient therapy. This is the first time he’s missed any outpatient therapy since he started in July. That shows both how fantastic things had been going for a couple months and how poorly he feels right now.
The next couple of days will be very telling in terms of how Kevin responds to the extra steroids. We hope that his energy will bounce back sometime soon so that his muscles don’t atrophy too much during this setback. Plus, it will be wonderful when he feels up to eating, exercising and talking once again.
We are all being consumed by the same worry that’s sitting in the back of our minds and chewing away at our sanity, but we’re all afraid to shine light on that worry and voice it aloud. Many medical clues point to the conclusion that this setback is most likely due to the steroid issue. Yet, we are constantly threatened by the possibility of the tumor growing larger. We dislike discussing this possibility, and we prefer to leave it in the dark corners of our minds. We’ve had to bring this idea out into the open during the last couple of days, which is probably why we are all so tense. However, even with the possibility of tumor growth now openly on the table, Kevin’s symptoms still point to critically low levels of steroids. We’re desperately hoping his symptoms over the next couple days point to this conclusion as well.
Thank you for keeping Kevin in your thoughts all these months. Right now he needs a bit of extra hope, prayers and good vibes sent to him through the atmosphere, so please keep up the support!
Tuesday, September 7, 2010
Steroid Speed Bump
Over the last couple of days, Kevin has been struggling from what appears to be the result of tapering off the steroids. He has had increased difficulty swallowing, maintaining his saliva and speaking, and he has been extremely tired. This morning, Kevin is pretty freaked out because he is not able to move his left side as well as he could yesterday. Kevin went a couple of days without any steroids whatsoever, and we’re guessing that these increased symptoms are due to this absence of oral steroids. Getting off the steroids could cause a bit of initial swelling around his tumor, since the steroids had been keeping that swelling down. Furthermore, since he’s been on steroids for nine months, his adrenal glands that produce his natural steroids may be significantly atrophied. It is fairly common for people who have been on oral steroids for a long period of time to have decreased natural steroids when they finally get off the pills. This decreased amount of natural steroid production can cause severe exhaustion, weakness and many other symptoms that Kevin is displaying at the moment.
Along with the overall regression in progress that we’ve seen over the past couple of days, the symptom that is most concerning is his decreased ability to swallow. His cough has also become less productive in clearing his throat, so we are worried about his chances of aspirating something. This was a concern for a very long time in the hospital, because aspiration can lead to pneumonia. Since Kevin has been home, his cough has been so productive and he regained significant control of his swallow, that aspiration hadn’t been much of a concern. Last night, however, his symptoms were combining to increase the risk of aspiration, so that’s what ultimately led us to restart him on a low level of oral steroids.
We gave Kevin a low dosage of steroids last night and again this morning. We’ll keep you all posted on how he progresses over the next few days. We hope this road block is temporary and will be cleared away soon, but we never know with this very tricky disease and situation.
Along with the overall regression in progress that we’ve seen over the past couple of days, the symptom that is most concerning is his decreased ability to swallow. His cough has also become less productive in clearing his throat, so we are worried about his chances of aspirating something. This was a concern for a very long time in the hospital, because aspiration can lead to pneumonia. Since Kevin has been home, his cough has been so productive and he regained significant control of his swallow, that aspiration hadn’t been much of a concern. Last night, however, his symptoms were combining to increase the risk of aspiration, so that’s what ultimately led us to restart him on a low level of oral steroids.
We gave Kevin a low dosage of steroids last night and again this morning. We’ll keep you all posted on how he progresses over the next few days. We hope this road block is temporary and will be cleared away soon, but we never know with this very tricky disease and situation.
Friday, September 3, 2010
A Good Week
*This is Mom updating again. Stacy drove to Kirkwood to prepare the cabin for our upcoming planned excursion.
It has been a good week. Chemo went well on Tuesday. One IV drug was administered, the pic line dressing changed, and a meeting with the Oncologist all accomplished in 90 minutes. Nice.
Kevin passed 2 more kidney stones today! We suspected he might have more. Now we have an explanation for that trace of blood in his last urinalysis.
Outpatient therapy is proceeding quite well. Kevin came to an impressive stand with the "minimal help" of his OT. We were all a bit teary eyed. Speech and Physical therapy are also keeping Kevin challenged.
It has been a good week. Chemo went well on Tuesday. One IV drug was administered, the pic line dressing changed, and a meeting with the Oncologist all accomplished in 90 minutes. Nice.
Kevin passed 2 more kidney stones today! We suspected he might have more. Now we have an explanation for that trace of blood in his last urinalysis.
Outpatient therapy is proceeding quite well. Kevin came to an impressive stand with the "minimal help" of his OT. We were all a bit teary eyed. Speech and Physical therapy are also keeping Kevin challenged.
We are continuing with Kevin's slow steroid taper. He is almost free of them, hopefully by our next entry, he will be completely off one more medication.
Another first took place this afternoon. Kevin's close friend Romain, who is currently in his native France, Skyped with Kevin. Isn't modern technology wonderful?
Another first took place this afternoon. Kevin's close friend Romain, who is currently in his native France, Skyped with Kevin. Isn't modern technology wonderful?
Saturday, August 28, 2010
An In-N-Out Outing
We have started contemplating a trip up to our house in the mountains because Kevin has been doing so well and is relatively stable. It is usually pretty quiet up there this time of year (between summer and winter resort seasons), so it might be a relaxing change of pace for all of us. Plus, it will be an emotional achievement for Kevin to make it back up to the mountains; we used to go up there every winter weekend when we were young, and now he hasn’t been there in almost two years.
The only thing that Kevin is concerned about is sitting in the car for over 4 hours. He has regularly been in the car for 20 minutes each way to and from outpatient therapy, but before yesterday, he hadn’t been in a car for longer than that (besides in a gurney in an ambulance when he was in much worse condition, which is a whole different situation). We suggested we take a car trip longer than 20 minutes and shorter than 4 hours to show him that he was able to sit in the car for a longer period of time. We tried to think of destinations about an hour away. I realized that the In-N-Out in San Jose was the perfect distance. Also, that trip came with a reward of a Double-Double animal style and a chocolate shake! Kevin breezed through the car trip without any problems, enjoyed his lunch, and was perfectly fine on the drive home. His confidence is boosted and he proved that his trunk strength is such that he can sit in the car, even on Highway 17 with all the winding turns, for longer than 20 minutes. We now have a tentative date in a couple weeks to head up to the mountains, and we’re looking forward to the trip.
The steroid taper is continuing to go well; with the rate things are going, we might have him off the steroids sometime in the next couple weeks. It will be the first time since November that he'll be off oral steroids!
There are a few behavioral signs that have shown us Kevin must be feeling better. On one of the warm nights this past week, we had a family dinner outside on the deck. At the start of the evening, Kevin was hesitant about eating outside because he claimed he was tired, but by the end of the meal, he was joking around and telling us stories about high school and college. The song “Roxanne” came on the radio, and Kevin said, “I have two stories about ‘Roxanne.’” He proceeded to tell us both stories while also doing a nice rendition of Sting’s lyrics. The fact that he had enough energy after eating to tell relatively long stories, laugh and sing signifies to us that he must be feeling a bit better. Simultaneously, he has been growing more stubborn and argumentative, which has always been Kevin’s personality. While it drives us up the wall at times, we take it as a sign that he’s improving, because when he was feeling worse, he didn’t have the energy to argue with us. Therefore, the stories and stubbornness remind us of how Kevin acted from age 1 to last November, when he got sick. We’re viewing these behavioral changes as positive signs that his energy, strength and stamina are returning.
Thank you to all of you for your love, thoughts, prayers and support. Kevin has improved a lot over the past few months, but he still has a long way to go and needs just as much support as ever. We are so lucky to have you all as a support network—thank you for doing such an amazing job.
The only thing that Kevin is concerned about is sitting in the car for over 4 hours. He has regularly been in the car for 20 minutes each way to and from outpatient therapy, but before yesterday, he hadn’t been in a car for longer than that (besides in a gurney in an ambulance when he was in much worse condition, which is a whole different situation). We suggested we take a car trip longer than 20 minutes and shorter than 4 hours to show him that he was able to sit in the car for a longer period of time. We tried to think of destinations about an hour away. I realized that the In-N-Out in San Jose was the perfect distance. Also, that trip came with a reward of a Double-Double animal style and a chocolate shake! Kevin breezed through the car trip without any problems, enjoyed his lunch, and was perfectly fine on the drive home. His confidence is boosted and he proved that his trunk strength is such that he can sit in the car, even on Highway 17 with all the winding turns, for longer than 20 minutes. We now have a tentative date in a couple weeks to head up to the mountains, and we’re looking forward to the trip.
The steroid taper is continuing to go well; with the rate things are going, we might have him off the steroids sometime in the next couple weeks. It will be the first time since November that he'll be off oral steroids!
There are a few behavioral signs that have shown us Kevin must be feeling better. On one of the warm nights this past week, we had a family dinner outside on the deck. At the start of the evening, Kevin was hesitant about eating outside because he claimed he was tired, but by the end of the meal, he was joking around and telling us stories about high school and college. The song “Roxanne” came on the radio, and Kevin said, “I have two stories about ‘Roxanne.’” He proceeded to tell us both stories while also doing a nice rendition of Sting’s lyrics. The fact that he had enough energy after eating to tell relatively long stories, laugh and sing signifies to us that he must be feeling a bit better. Simultaneously, he has been growing more stubborn and argumentative, which has always been Kevin’s personality. While it drives us up the wall at times, we take it as a sign that he’s improving, because when he was feeling worse, he didn’t have the energy to argue with us. Therefore, the stories and stubbornness remind us of how Kevin acted from age 1 to last November, when he got sick. We’re viewing these behavioral changes as positive signs that his energy, strength and stamina are returning.
Thank you to all of you for your love, thoughts, prayers and support. Kevin has improved a lot over the past few months, but he still has a long way to go and needs just as much support as ever. We are so lucky to have you all as a support network—thank you for doing such an amazing job.
Tuesday, August 24, 2010
Energy Improvement
Kevin’s energy level has dramatically increased over the last three days. He was exhausted for several days after his large chemotherapy session last week, but his energy is finally bouncing back. With his energy improvement came an attitude improvement as well; he was pretty depressed when he was so tired, but now he has at least few moments of positive attitude during the day. It’s wonderful to hear his laugh bouncing through the house from time to time.
Over the past few days, Kevin has also been working hard at occupational therapy and at home while practicing his exercises. At the moment, he’s sitting up in the wheelchair without much support at all, and he’s sitting up remarkably straight. Besides relearning how to use his muscles and building muscle mass, he has to regain a sense of balance. His senses have gotten so screwed up that he has had a very difficult time telling straight from crooked, or feeling where his center of gravity lies. However, as more time goes by, he’s more able to sense if he’s leaning to one side and what he needs to do in order to straighten up.
We are also plowing along with the steroid taper. We’ve picked up the pace of decreasing the steroids, and so far (knock on wood), Kevin is coping well. We’d like to get him off the steroids as quickly as possible because, at this low level, they probably mess with his emotions more than they’re helping with the swelling. He still has severe mood swings, and can emphatically display five different emotions in under two minutes. The sooner he can return to his normal emotions, the better!
After an extremely wet, cold and foggy June and July, we finally got some warmth at our house. However, now it’s over 100°F (it’s 100 in the shade), so the weather quickly swung from one extreme to the other. We are now headed outside so Kevin can spray the rest of us with the hose. At least it finally feels like summer!
Over the past few days, Kevin has also been working hard at occupational therapy and at home while practicing his exercises. At the moment, he’s sitting up in the wheelchair without much support at all, and he’s sitting up remarkably straight. Besides relearning how to use his muscles and building muscle mass, he has to regain a sense of balance. His senses have gotten so screwed up that he has had a very difficult time telling straight from crooked, or feeling where his center of gravity lies. However, as more time goes by, he’s more able to sense if he’s leaning to one side and what he needs to do in order to straighten up.
We are also plowing along with the steroid taper. We’ve picked up the pace of decreasing the steroids, and so far (knock on wood), Kevin is coping well. We’d like to get him off the steroids as quickly as possible because, at this low level, they probably mess with his emotions more than they’re helping with the swelling. He still has severe mood swings, and can emphatically display five different emotions in under two minutes. The sooner he can return to his normal emotions, the better!
After an extremely wet, cold and foggy June and July, we finally got some warmth at our house. However, now it’s over 100°F (it’s 100 in the shade), so the weather quickly swung from one extreme to the other. We are now headed outside so Kevin can spray the rest of us with the hose. At least it finally feels like summer!
Wednesday, August 18, 2010
Exhaustion and Milkshakes
Yesterday, Kevin received the “big 3” chemotherapy treatments. This only happens every six weeks, so we tend to forget how tired he becomes after receiving all of the medications at once. Furthermore, the chemo appointment this week took 5 hours, so that in itself wore him out (it also wiped out Mom, Dad and Kathlin). However, Kevin’s local oncologist thought Kevin looked good, and he is nudging us to get Kevin off the steroids. Kevin is now on a very low level of steroids. We’ve been tapering him off very slowly, giving his body a chance to take over so the swelling doesn’t suddenly return. With the oncologist’s suggestion, we might increase the speed of the taper, and we might have him off the steroids by Kevin’s next chemotherapy appointment in two weeks.
We’ve decided to do a system of star rankings for the milkshakes that are excluded from the contest for best chocolate shake. Kevin has been drinking a lot of milkshakes from Marianne’s in Santa Cruz, but there’s only so many chocolate milkshakes that one ice cream shop can make. Kevin has started branching out to new flavors. I’m adding a new column, "Shake Stars," to the side of the blog for milkshakes of various flavors (other than chocolate), ranked 1 to 5 stars. So far, he’s given the Oatmeal Raisin Cookie Dough milkshake from Marianne’s a 4. For Kevin’s birthday, Kathlin’s parents gave him a milkshake machine. He’s been flipping through a milkshake cookbook for the past couple of weeks, figuring out what recipes he wants to try. They finally fired up the machine today and made a Bananas Foster shake. I don’t think they flambéed the top of the milkshake, though that would have been quite exciting! He has ranked the homemade Bananas Foster milkshake a 4 as well.
Despite Kevin’s decreased energy level lately, he’s had some great achievements. On Sunday, he stood at our makeshift standing frame for a record total of 28 minutes. He’s also managing to gain some control of his left arm and leg. I’m still amazed that he can move his left arm on command; he couldn’t move it for such a long period of time. Kevin’s hair is also starting to grow back in. It’s very downy and fuzzy at this point, but it’s getting thicker every day. Kevin’s blood work is also much more stable than it used to be. His platelet count is staying at a healthy, normal level, and his potassium and magnesium levels are steady, though on the low end of normal. Another indicator in his blood work now shows that he’s building muscle mass. We’re hoping his energy level grows over the next few days, but even with the little energy he does have, he’s managing to do some things that weren’t possible for him a few weeks ago.
We’ve decided to do a system of star rankings for the milkshakes that are excluded from the contest for best chocolate shake. Kevin has been drinking a lot of milkshakes from Marianne’s in Santa Cruz, but there’s only so many chocolate milkshakes that one ice cream shop can make. Kevin has started branching out to new flavors. I’m adding a new column, "Shake Stars," to the side of the blog for milkshakes of various flavors (other than chocolate), ranked 1 to 5 stars. So far, he’s given the Oatmeal Raisin Cookie Dough milkshake from Marianne’s a 4. For Kevin’s birthday, Kathlin’s parents gave him a milkshake machine. He’s been flipping through a milkshake cookbook for the past couple of weeks, figuring out what recipes he wants to try. They finally fired up the machine today and made a Bananas Foster shake. I don’t think they flambéed the top of the milkshake, though that would have been quite exciting! He has ranked the homemade Bananas Foster milkshake a 4 as well.
Despite Kevin’s decreased energy level lately, he’s had some great achievements. On Sunday, he stood at our makeshift standing frame for a record total of 28 minutes. He’s also managing to gain some control of his left arm and leg. I’m still amazed that he can move his left arm on command; he couldn’t move it for such a long period of time. Kevin’s hair is also starting to grow back in. It’s very downy and fuzzy at this point, but it’s getting thicker every day. Kevin’s blood work is also much more stable than it used to be. His platelet count is staying at a healthy, normal level, and his potassium and magnesium levels are steady, though on the low end of normal. Another indicator in his blood work now shows that he’s building muscle mass. We’re hoping his energy level grows over the next few days, but even with the little energy he does have, he’s managing to do some things that weren’t possible for him a few weeks ago.
Friday, August 13, 2010
Visual Stimulation
Throughout Kevin’s illness, we have remained adamant about decorating the rooms where he spends most his time. In the hospital, we put up pictures of Kevin racing Giant Slalom and jumping off cornices at Kirkwood. The nurses almost always commented on these pictures and were amazed that the helmeted and goggled skier was Kevin. These pictures and conversations made the nurses realize who Kevin is and humanized him as a patient. Mom was extremely diligent about moving the posters and decorations from room to room in the hospital; when Kevin was transferred to the ICU, Mom was frantically taking things off the walls and figuring out how to sneak some pictures into the stricter unit.
Now, the living room where Kevin and Kathlin spend most of their time is covered with the birthday cards (278 total) you all have sent. The main point is no longer to show Kevin’s caretakers who he is—we all know Kevin. We now need to focus on showing Kevin how much support he has out there. So, every inch of wall space in the living room boasts a message of love and encouragement from at least one supporter, and often a whole family of supporters. We are simultaneously (and covertly) using this as an eye exercise. “Hey Kevin, remember that card (pointing to one on the far wall, in the corner so he has to move his eyes and refocus them) from so-and-so? That’s a great one…”
The symptom that Kevin continues to be most bothered by is the “bounciness” of his eyes. The nerves controlling the muscles that direct his eye movement were also affected by the tumor location. There was a time in the hospital when Kevin couldn’t move his eyes at all. At other points, one eye was significantly crossed. Kevin has now regained eye movement, but his control is far from perfect. Plus, spasms in the muscles that control his eyes create a bouncing effect. We encourage him to keep doing his eye exercises, but they are one of the least comfortable exercises for him to do. Unfortunately, this seems like a symptom that isn’t going to get better on its own, so we have to keep hounding him on the exercises. Getting him to read or focus on visual things is another form of exercise for those eye muscles. Kevin gets several magazines that keep his interest, so he exercises his eyes by looking at those. Also, we have just purchased the game “Apples to Apples” as something fun that requires a bit of reading (and has relatively large letters—he can’t read normal, small type just yet). Do any of you have suggestions for activities that involve reading big letters (large type novels are still a bit too much) or focusing his eyes?
Thanks to everyone for your continued support and encouragement!
Now, the living room where Kevin and Kathlin spend most of their time is covered with the birthday cards (278 total) you all have sent. The main point is no longer to show Kevin’s caretakers who he is—we all know Kevin. We now need to focus on showing Kevin how much support he has out there. So, every inch of wall space in the living room boasts a message of love and encouragement from at least one supporter, and often a whole family of supporters. We are simultaneously (and covertly) using this as an eye exercise. “Hey Kevin, remember that card (pointing to one on the far wall, in the corner so he has to move his eyes and refocus them) from so-and-so? That’s a great one…”
The symptom that Kevin continues to be most bothered by is the “bounciness” of his eyes. The nerves controlling the muscles that direct his eye movement were also affected by the tumor location. There was a time in the hospital when Kevin couldn’t move his eyes at all. At other points, one eye was significantly crossed. Kevin has now regained eye movement, but his control is far from perfect. Plus, spasms in the muscles that control his eyes create a bouncing effect. We encourage him to keep doing his eye exercises, but they are one of the least comfortable exercises for him to do. Unfortunately, this seems like a symptom that isn’t going to get better on its own, so we have to keep hounding him on the exercises. Getting him to read or focus on visual things is another form of exercise for those eye muscles. Kevin gets several magazines that keep his interest, so he exercises his eyes by looking at those. Also, we have just purchased the game “Apples to Apples” as something fun that requires a bit of reading (and has relatively large letters—he can’t read normal, small type just yet). Do any of you have suggestions for activities that involve reading big letters (large type novels are still a bit too much) or focusing his eyes?
Thanks to everyone for your continued support and encouragement!
P.S. The number 13 is special to Colgate University. As a result Colgate declares every Friday the 13th "Colgate Day". Happy Colgate Day to all!
Monday, August 9, 2010
The Fight is ON!
This afternoon, Kevin received another MRI to check on the progress of the tumor. When to get another MRI has been a point of contention in our family for the last several weeks. Kevin and Kathlin would like to see an image frequently to reassure them that their hard work isn’t all for naught. However, the rest of us hold that the scan shouldn’t be the deciding factor as to whether Kevin decides to keep working so hard. His immense progress over the past couple of months is excellent proof that his hard work is paying off and that the tumor is most likely shrinking. In our eyes, clinical progress (improvement in his symptoms) is just as reliable a sign as anything the MRI will show.
To cut to the quick, the scan today reaffirmed our suspicions and showed that the tumor has shrunk significantly. Yes, it is still there, and it will take many months, possibly years, for everything in that area to completely reabsorb into the brain stem. However, this is the first scan that has shown significant reversal of the tumors’ growth. At the moment, Bob and Steve are retreating!
Some of you with excellent memories may ask… but what about the last MRI in May, after Kevin had a seizure in the Dominican rehab facility and had to be admitted to the main Dominican Hospital for a few days? That MRI showed growth in the tumor, right?
All of that is correct. Bear with me while I try to explain. Yes, the previous MRI had shown that the affected area of Kevin’s brain stem had grown. However, the “growth” as seen on MRIs after radiation therapy doesn’t necessarily mean the tumor is growing. It could also be the agitation of the tumor, and a sign that the tumor is breaking apart. In fact, the “growth” on those post-radiation MRIs could even mean better long-term success in eliminating the tumor. Go figure. So, growth on the MRI can apparently mean that the tumor is agitated and will break apart in the future, or it could actually mean tumor growth. See why we like to trust his symptoms as better signs of his overall progress? We certainly don’t want Kevin to get discouraged from growth on a MRI scan if that “growth” may mean eventual success.
Whether the growth on the previous MRI was actual tumor growth or a sign of the tumor’s agitation, the pattern of growth has reversed for the first time since November 2009. The growth as seen on the previous MRI has disappeared. Two characteristics have significantly improved; the edema (swelling) and the mass effect (how much the tumor is pushing on other structures in the area). The decrease in edema is especially wonderful, seen as Kevin is on an extremely low dosage of steroids. Therefore, this decrease in swelling simply means that things are getting better; the steroids are no longer helping much to reduce the edema.
Furthermore, the tumor’s mass effect has dramatically improved. The tumor used to be pressing against other structures in Kevin’s brain stem such as a ventricle that holds cerebrospinal fluid (remember back to February when he had a “brain drain” tube in to help with the drainage of that ventricle?). Now, the tumor is not nearly as threatening to other items in the brain stem.
The MRI also showed decreased enhancement (structure) of the tumor. An especially dangerous tumor would have a lot of circulatory enhancement, but the MRI shows that there’s not much structure to this tumor. The Avastin chemotherapy is most likely helping on this front, since the Avastin attempts to shut off circulation to the tumor.
Overall, the MRI confirms that the tables have finally started to turn Kevin’s way. While this is excellent news, it also means that Kevin needs to fight even harder. As I said before, if all goes well, it could take years for all the tissue, blood, etc. in the affected area to reabsorb. It could take longer for his nerves and muscles to rewire, overcome atrophy and regain their normal function. This turn in the game means that Kevin needs to fight harder and truly take ownership of his conquest over Bob and Steve. Think of it as a 49-0 score in the first quarter of a football game, with Steve and Bob obnoxiously scoring touchdown after pompous touchdown. Well, now Kevin has scored about four touchdowns of his own, and it’s only the start of the second quarter (I guess this is turning out to be a very high-scoring game). Bob and Steve are still winning 49-28, but this turn in the tables motivates Kevin even more and makes us cheer even louder. The game is far from over. As Dad told Kevin when he came out of the MRI, “the fight is on!”
We see this as also meaning that you, as cheerleaders, have been doing something right for the past couple months. Now is certainly not the time to quit supporting Kevin—we need to keep up what’s been working, if not double our efforts to really get Kevin’s momentum going. The reaffirmed breakdown in the tumor is giving Kevin more reason to fight, and it should give us more reason to cheer him on. Thank you for all your cheerleading over the past 9 months, and please, keep it up!!!
To cut to the quick, the scan today reaffirmed our suspicions and showed that the tumor has shrunk significantly. Yes, it is still there, and it will take many months, possibly years, for everything in that area to completely reabsorb into the brain stem. However, this is the first scan that has shown significant reversal of the tumors’ growth. At the moment, Bob and Steve are retreating!
Some of you with excellent memories may ask… but what about the last MRI in May, after Kevin had a seizure in the Dominican rehab facility and had to be admitted to the main Dominican Hospital for a few days? That MRI showed growth in the tumor, right?
All of that is correct. Bear with me while I try to explain. Yes, the previous MRI had shown that the affected area of Kevin’s brain stem had grown. However, the “growth” as seen on MRIs after radiation therapy doesn’t necessarily mean the tumor is growing. It could also be the agitation of the tumor, and a sign that the tumor is breaking apart. In fact, the “growth” on those post-radiation MRIs could even mean better long-term success in eliminating the tumor. Go figure. So, growth on the MRI can apparently mean that the tumor is agitated and will break apart in the future, or it could actually mean tumor growth. See why we like to trust his symptoms as better signs of his overall progress? We certainly don’t want Kevin to get discouraged from growth on a MRI scan if that “growth” may mean eventual success.
Whether the growth on the previous MRI was actual tumor growth or a sign of the tumor’s agitation, the pattern of growth has reversed for the first time since November 2009. The growth as seen on the previous MRI has disappeared. Two characteristics have significantly improved; the edema (swelling) and the mass effect (how much the tumor is pushing on other structures in the area). The decrease in edema is especially wonderful, seen as Kevin is on an extremely low dosage of steroids. Therefore, this decrease in swelling simply means that things are getting better; the steroids are no longer helping much to reduce the edema.
Furthermore, the tumor’s mass effect has dramatically improved. The tumor used to be pressing against other structures in Kevin’s brain stem such as a ventricle that holds cerebrospinal fluid (remember back to February when he had a “brain drain” tube in to help with the drainage of that ventricle?). Now, the tumor is not nearly as threatening to other items in the brain stem.
The MRI also showed decreased enhancement (structure) of the tumor. An especially dangerous tumor would have a lot of circulatory enhancement, but the MRI shows that there’s not much structure to this tumor. The Avastin chemotherapy is most likely helping on this front, since the Avastin attempts to shut off circulation to the tumor.
Overall, the MRI confirms that the tables have finally started to turn Kevin’s way. While this is excellent news, it also means that Kevin needs to fight even harder. As I said before, if all goes well, it could take years for all the tissue, blood, etc. in the affected area to reabsorb. It could take longer for his nerves and muscles to rewire, overcome atrophy and regain their normal function. This turn in the game means that Kevin needs to fight harder and truly take ownership of his conquest over Bob and Steve. Think of it as a 49-0 score in the first quarter of a football game, with Steve and Bob obnoxiously scoring touchdown after pompous touchdown. Well, now Kevin has scored about four touchdowns of his own, and it’s only the start of the second quarter (I guess this is turning out to be a very high-scoring game). Bob and Steve are still winning 49-28, but this turn in the tables motivates Kevin even more and makes us cheer even louder. The game is far from over. As Dad told Kevin when he came out of the MRI, “the fight is on!”
We see this as also meaning that you, as cheerleaders, have been doing something right for the past couple months. Now is certainly not the time to quit supporting Kevin—we need to keep up what’s been working, if not double our efforts to really get Kevin’s momentum going. The reaffirmed breakdown in the tumor is giving Kevin more reason to fight, and it should give us more reason to cheer him on. Thank you for all your cheerleading over the past 9 months, and please, keep it up!!!
Saturday, August 7, 2010
More Kidney Stones?
Friday Kevin had a rather tough day. He still may have some kidney stones which give him occasional trouble. After not sleeping well, in the morning he was nauseated with flank and groin pain. Early afternoon Kevin had blood in his urine. Straining showed the appearance of some rough material. Poor kid. Fortunately, Kevin seems to be doing better today.
We were happy that no therapy sessions were scheduled Friday since Kevin was not feeling well. Thursday was very productive in physical therapy. He worked hard in the "LiteGait", a partial weight bearing contraption to help with walking. Kevin gets strapped in and hoisted up so that he stands on his feet. While supported by the apparatus, and with the therapist directing, Kevin then tries moving his feet forward one at a time. It is not as easy as it sounds however. Not only is Kevin needing to rebuild his atrophied muscles, his brain requires "rewiring" as well. It has to learn new pathways in order to tell his legs how to move appropriately. We were encouraged by how well Kevin looked and moved on Thursday. The last time he was in a LiteGait was at Stanford Hospital late January before the bleed and long ICU stay. Kevin's trunk strength and coordination are much better now. It certainly is not an easy exercise for Kevin yet, but he has definitely improved.
*This is Mom's last post as Stacy is due to return home later today.
We were happy that no therapy sessions were scheduled Friday since Kevin was not feeling well. Thursday was very productive in physical therapy. He worked hard in the "LiteGait", a partial weight bearing contraption to help with walking. Kevin gets strapped in and hoisted up so that he stands on his feet. While supported by the apparatus, and with the therapist directing, Kevin then tries moving his feet forward one at a time. It is not as easy as it sounds however. Not only is Kevin needing to rebuild his atrophied muscles, his brain requires "rewiring" as well. It has to learn new pathways in order to tell his legs how to move appropriately. We were encouraged by how well Kevin looked and moved on Thursday. The last time he was in a LiteGait was at Stanford Hospital late January before the bleed and long ICU stay. Kevin's trunk strength and coordination are much better now. It certainly is not an easy exercise for Kevin yet, but he has definitely improved.
*This is Mom's last post as Stacy is due to return home later today.
