After several months of silence, I'm writing to commemorate Kevin's final achievement. This past weekend, Mom, Dad, and I traveled to Colgate for graduation.
Kevin was awarded his posthumous Colgate diploma at the commencement ceremony. We walked across the stage in his place and accepted the degree. After we shook Colgate's President's hand, I looked into the audience to see every single person on their feet and applauding Kevin's memory. Every professor on stage was also giving Kevin a standing ovation. This was the sort of support we received all weekend from the Colgate community. We can't thank the members of the community enough. The weekend was incredibly emotional for us, since we were flooded by so many memories of Kevin being so happy at Colgate. However, the love and support we felt from Colgate students, professors, administrators, parents, and staff comforted us that Kevin's legacy at Colgate will not fade anytime soon.
Kevin also received an honorary prize, the Norma Vergo Prize, from the Geology Department. This prize was presented to Kevin for "significantly contributing to the spirit of excellence among his fellow undergraduates" in the department (as well as having the department's second highest GPA.) They said, "Kevin was an outstanding student whose love for learning was evident in all his academic pursuits."
Kathlin graduated this weekend, and we were thrilled we could be there to support her. We tried to concentrate on her whenever we would become too overwhelmed with missing Kevin. Kathlin will be taking a year off before beginning a post-baccalaureate pre-med program at Bryn Mawr. Her experiences over the past two years have made her want to head into the medical field. We all know she'll make a wonderful doctor and patient advocate, so we're very excited for her to embark upon this next journey -- after a year of well-deserved rest, travel, and a bit of work in the medical field.
It was somewhat therapeutic for us to spread some of Kev's ashes around campus. We are comforted to know a part of Kevin will always be at Colgate.
Thank you all for your support over the past several months. We miss Kevin so much, but your love has helped us get through this. Thank you.
Friday, May 20, 2011
Friday, November 19, 2010
Colgate Service
There will be a memorial service for Kevin at Colgate University at 6 p.m. on Monday, December 6th. It will take place in the Colgate Memorial Chapel on campus. All who have been touched or affected by Kevin's life are welcome to attend. Mom, Dad and I will be there, as will Kathlin and her family.
For those of you unfamiliar with the Colgate campus, please see this map of campus. The Colgate Memorial Chapel is building #24. Colgate is in the small town of Hamilton, NY, about an hour from Syracuse, NY. This site lists directions to Hamilton as well as other travel information for the area.
We look forward to the chance to celebrate Kevin's life at the campus and community that he dearly loved. We hope to share this experience with those of you who are or were involved in this wonderful community. We can't ever thank you enough for the amazing support you provided Kevin throughout his entire time at Colgate, and for the support you continue to show us, his family.
Here is the link to the write up on the service: http://blogs.colgate.edu/2010/12/service-held-in-memory-of-kevi.html
For those of you unfamiliar with the Colgate campus, please see this map of campus. The Colgate Memorial Chapel is building #24. Colgate is in the small town of Hamilton, NY, about an hour from Syracuse, NY. This site lists directions to Hamilton as well as other travel information for the area.
We look forward to the chance to celebrate Kevin's life at the campus and community that he dearly loved. We hope to share this experience with those of you who are or were involved in this wonderful community. We can't ever thank you enough for the amazing support you provided Kevin throughout his entire time at Colgate, and for the support you continue to show us, his family.
Here is the link to the write up on the service: http://blogs.colgate.edu/2010/12/service-held-in-memory-of-kevi.html
Tuesday, November 16, 2010
Speeches from Aptos Service
We have been receiving some requests for the speeches from Kevin's memorial service to be posted on the blog. For those of you who are interested, please see them below. First is what I said, followed by Dad, then by Kathlin. For those of you who were at the service, thank you so much for attending. For those of you who couldn't make it, we're thrilled that we can still keep you in the loop with the blog. It has been such a great way to spread information, stories and memories about Kevin. I will be leaving the site up as a web-based memorial to Kevin, and will check it frequently to see if there have been any comments. So, feel free to continue sharing memories or thoughts as time goes by. I may post reflections every once in a while, once I've had a bit of time to organize my thoughts and emotions. And as always, thank you to everyone for supporting our family and each other through Kevin's passing.
Stacy's Speech:
Kevin’s favorite quote was:
Live life to the fullest and don’t take anything for granted.
Kevin fulfilled his life rule. As a compulsive overachiever, I was often envious of my little brother when he was able to complete exactly the least amount of work required to get an A. While I stressed over small and meaningless details for assignments, Kevin had already compiled the larger picture, ditched the unimportant details and was filling his life with people and activities he actually enjoyed. Kevin never once showed a morsel of regret about living this way—he was living by his life rules. When I was a child, I resented him for this; he was having fun while I was stressing about school. But now, I am SO GLAD he lived his life his way.
If I learn anything from Kevin’s life and death, it’s how to live a fulfilled life. Kevin knew what he loved and poured his entire life into those things. By the time he was a Senior at Colgate, Kevin had compiled a life in which he loved every single thing he did. He was in a location he adored and part of a student body he admired and respected. Kevin enjoyed his majors so much that when he explained them, he made listeners question their own choice of major, because his sounded so interesting and applicable to real life. Kevin loved leading the club water polo team, and he was thrilled to participate on the ski team. He had found Kathlin, the love of his life. Kevin did not waste precious time on things he didn’t enjoy; there simply wasn’t room in his life for those things. With so much love for his life, Kevin truly lived life to the fullest. And, his fate drove home the message to never, ever take anything for granted.
When Kevin came home from the hospital in June, we started encouraging him to tap his foot or fingers to music as a fun form of occupational therapy. Now, to help us all in emotional therapy, I invite you all to sing or tap your foot along to the next song. You can find the lyrics to “I’ll Fly Away” on the back of your pamphlet.
Rich's Speech:
Courageous and committed.
That was Kevin on skis. I loved to ski with Kevin, as did many of you, yet only a few of us hung with Kevin when he headed for the chutes and cornices.
He called this photo of him “Full Committal”.
Several years ago, I caught up with Kevin where I usually did on a powder day, at the bottom of the mountain waiting for the chair. I rode with him up chair 6 at Kirkwood while Kevin, his close friends Joshua and Seth, debated, and then decided which ridiculously hard chute to attempt next.
Immediately Joshua shouted “KGF”.
Seth chimed in with “KGF”.
I paused, wondering as to what new ski terminology or hand held electronic I had failed to learn about. I gave up, prepared myself to get the “Oh Dad, you’re so out of it” look and asked: What’s “KGF”?
"Kevin goes first."
Ooooooh, I get it, it’s his turn?
NO, when they wanted to ski a new or difficult line off the cornice, it was “KGF”. They would follow Kevin’s line if he made it, go elsewhere if he didn’t. The comment was “If Kevin can’t make it, no one can”.
I was so proud of my son.
Well, it turns out that everybody but me knew about “KGF”.
I mentioned “KGF” to Seth’s dad Jeff a few days later. He casually said “Oh yea, it’s been ‘KGF’ forever.” Turns out a lot of the Kirkwood community had relied on Kevin to negotiate their greatest challenges for years.
For those of us here today, it is again “KGF”. Courageous and committed, with his angel Kathlin at his side, Kevin has shown us how to negotiate our final challenge.
I am so proud of my son.
KGF!
Kathlin's Speech:
Hello, I’m Kathlin, Kevin’s fiancée. First I want to thank all of you for coming here today to celebrate Kevin, and I especially want to thank all of you who helped shape Kevin into the person I grew to love so much.
Kevin and I met during our freshman year at Colgate, and we became best friends. We found that we had a lot in common, but also that we had a lot to share and teach each other.
Kevin enjoyed life to the fullest, and he had wisdom beyond his years. In our 4 years together, he passed some of that love of life and wisdom on to me: from his love of the outdoors, sports, and his studies at Colgate, to the patience he showed me when he taught me how to drive a stick shift and to ski. I fell in love with Kevin, and I benefited from both his passion for life and his care and compassion for everyone around him.
It’s important to me that you know that these are not just words, so let me give you an example. I remember a day when Kevin was hospitalized at Stanford. He was very sick and he was also sad. A woman we had never met before came into our hospital room and offered to help him with art therapy. Kevin never liked drawing or painting very much and I knew that he had no interest in it then, but he said yes and struggled mightily to paint with a right hand that he could barely control. He did that just so that he wouldn’t hurt her feelings.
Even in the depth of his despair over losing his life, he continued to be concerned about me and his family. I can’t tell you how many times after Kevin became sick that he told me that he wanted me to go on and have a good life. It always broke my heart to hear it, but I did my best to hide the tears and tell him that I would have a good life with him. Although I can’t imagine that the sadness I now feel will ever completely leave me, I know that I have to go forward and try to have the life Kevin wanted for me and, more importantly, to try to have Kevin’s grace, for that is the thing I love most about him.
Stacy's Speech:
Kevin’s favorite quote was:
Live life to the fullest and don’t take anything for granted.
Kevin fulfilled his life rule. As a compulsive overachiever, I was often envious of my little brother when he was able to complete exactly the least amount of work required to get an A. While I stressed over small and meaningless details for assignments, Kevin had already compiled the larger picture, ditched the unimportant details and was filling his life with people and activities he actually enjoyed. Kevin never once showed a morsel of regret about living this way—he was living by his life rules. When I was a child, I resented him for this; he was having fun while I was stressing about school. But now, I am SO GLAD he lived his life his way.
If I learn anything from Kevin’s life and death, it’s how to live a fulfilled life. Kevin knew what he loved and poured his entire life into those things. By the time he was a Senior at Colgate, Kevin had compiled a life in which he loved every single thing he did. He was in a location he adored and part of a student body he admired and respected. Kevin enjoyed his majors so much that when he explained them, he made listeners question their own choice of major, because his sounded so interesting and applicable to real life. Kevin loved leading the club water polo team, and he was thrilled to participate on the ski team. He had found Kathlin, the love of his life. Kevin did not waste precious time on things he didn’t enjoy; there simply wasn’t room in his life for those things. With so much love for his life, Kevin truly lived life to the fullest. And, his fate drove home the message to never, ever take anything for granted.
When Kevin came home from the hospital in June, we started encouraging him to tap his foot or fingers to music as a fun form of occupational therapy. Now, to help us all in emotional therapy, I invite you all to sing or tap your foot along to the next song. You can find the lyrics to “I’ll Fly Away” on the back of your pamphlet.
Rich's Speech:
Courageous and committed.
That was Kevin on skis. I loved to ski with Kevin, as did many of you, yet only a few of us hung with Kevin when he headed for the chutes and cornices.
He called this photo of him “Full Committal”.
Several years ago, I caught up with Kevin where I usually did on a powder day, at the bottom of the mountain waiting for the chair. I rode with him up chair 6 at Kirkwood while Kevin, his close friends Joshua and Seth, debated, and then decided which ridiculously hard chute to attempt next.
Immediately Joshua shouted “KGF”.
Seth chimed in with “KGF”.
I paused, wondering as to what new ski terminology or hand held electronic I had failed to learn about. I gave up, prepared myself to get the “Oh Dad, you’re so out of it” look and asked: What’s “KGF”?
"Kevin goes first."
Ooooooh, I get it, it’s his turn?
NO, when they wanted to ski a new or difficult line off the cornice, it was “KGF”. They would follow Kevin’s line if he made it, go elsewhere if he didn’t. The comment was “If Kevin can’t make it, no one can”.
I was so proud of my son.
Well, it turns out that everybody but me knew about “KGF”.
I mentioned “KGF” to Seth’s dad Jeff a few days later. He casually said “Oh yea, it’s been ‘KGF’ forever.” Turns out a lot of the Kirkwood community had relied on Kevin to negotiate their greatest challenges for years.
For those of us here today, it is again “KGF”. Courageous and committed, with his angel Kathlin at his side, Kevin has shown us how to negotiate our final challenge.
I am so proud of my son.
KGF!
Kathlin's Speech:
Hello, I’m Kathlin, Kevin’s fiancée. First I want to thank all of you for coming here today to celebrate Kevin, and I especially want to thank all of you who helped shape Kevin into the person I grew to love so much.
Kevin and I met during our freshman year at Colgate, and we became best friends. We found that we had a lot in common, but also that we had a lot to share and teach each other.
Kevin enjoyed life to the fullest, and he had wisdom beyond his years. In our 4 years together, he passed some of that love of life and wisdom on to me: from his love of the outdoors, sports, and his studies at Colgate, to the patience he showed me when he taught me how to drive a stick shift and to ski. I fell in love with Kevin, and I benefited from both his passion for life and his care and compassion for everyone around him.
It’s important to me that you know that these are not just words, so let me give you an example. I remember a day when Kevin was hospitalized at Stanford. He was very sick and he was also sad. A woman we had never met before came into our hospital room and offered to help him with art therapy. Kevin never liked drawing or painting very much and I knew that he had no interest in it then, but he said yes and struggled mightily to paint with a right hand that he could barely control. He did that just so that he wouldn’t hurt her feelings.
Even in the depth of his despair over losing his life, he continued to be concerned about me and his family. I can’t tell you how many times after Kevin became sick that he told me that he wanted me to go on and have a good life. It always broke my heart to hear it, but I did my best to hide the tears and tell him that I would have a good life with him. Although I can’t imagine that the sadness I now feel will ever completely leave me, I know that I have to go forward and try to have the life Kevin wanted for me and, more importantly, to try to have Kevin’s grace, for that is the thing I love most about him.
Monday, October 25, 2010
Slideshows from Kevin's Service
I apologize for the poor video quality of the first slideshow; I needed to make some sacrifices in quality in order to fit a video that long on the blog. I hope some of the pictures bring a smile to your face in a fond memory of Kevin.
Tuesday, October 19, 2010
Song List
In response to Dr. Averill's question below about the songs played at Kevin's memorial, I've written out a list of the songs we included in the slideshows. I am currently learning the ins and outs of video files in hopes that I can upload to the blog both the long slideshow (which played before Kevin's memorial, while people were entering Twin Lakes) and the shorter slideshow (which played during the service). I hope to have those up within the next couple of days, so check back here soon if you're interested in seeing them.
Marc Cohn - Walk Through the World
Bob Dylan - The Man in Me
Old Crow Medicine Show - Wagon Wheel
Jackson Browne - For a Dancer
Boston - Peace of Mind
Sheryl Crow - Diamond Road
Sarah McLachlan - I Will Remember You
Michael Jackson - Will You Be There
Also, the songs that were played throughout the service and afterwards:
Alison Krauss and Gillian Welch - I'll Fly Away (from O Brother Where Art Thou)
Billy Joe Shaver - Live Forever
Tom Petty - I Won't Back Down
Rusted Root - Send Me on My Way
Marc Cohn - Walk Through the World
Bob Dylan - The Man in Me
Old Crow Medicine Show - Wagon Wheel
Jackson Browne - For a Dancer
Boston - Peace of Mind
Sheryl Crow - Diamond Road
Sarah McLachlan - I Will Remember You
Michael Jackson - Will You Be There
Also, the songs that were played throughout the service and afterwards:
Alison Krauss and Gillian Welch - I'll Fly Away (from O Brother Where Art Thou)
Billy Joe Shaver - Live Forever
Tom Petty - I Won't Back Down
Rusted Root - Send Me on My Way
Friday, October 15, 2010
Yesterday's Service and Tomorrow's Potluck
Thanks to the many, many people who came to Kevin's memorial service on Thursday evening. We were so happy you could help us remember Kevin's very full and active life. For an informal potluck and a casual gathering where we can tell stories about Kevin and take part in some of his favorite activities, please join us tomorrow, Saturday, at Seacliff Beach (for details on location and parking, see the "Saturday at Seacliff" post below). Thank you to all for your hugs, cards, flowers, donations to Colgate's Kevin Williams Memorial Fund, and most of all, your love and support.
Tuesday, October 12, 2010
Santa Cruz Sentinel
Sunday, October 10, 2010
Saturday at Seacliff
Instead of a formal reception after Thursday’s memorial service, we’ve decided to have a celebration of Kevin’s life that better fits his lifestyle. Please join us for a beach potluck on Saturday, October 16th at Seacliff State Beach in Aptos. The celebration will start at 11 a.m. It seems right to remember and honor Kevin while wearing flip flops, playing volleyball and jumping in the ocean. This will be a time to share stories about Kevin while enjoying one of his favorite beaches.
Over the past few days, we have been sorting through pictures of Kevin. Tears have come to our eyes, but more often, we have smiled as we happen upon a forgotten memory or a photo that captures Kevin’s pure joy. He lived a full life, packed to the brim with activities and people he loved. His smile has been shining at us from these photos, and we can only answer it with our own. We’d like to follow Kevin’s example of a life lived with joy, love and passion; so, a beach party is in order.
Please bring a dish and a story to share. We will have at least one grill, so foods that need to be barbecued are welcome. There will be a beach volleyball net and boogie boards so we can participate in a couple of Kevin’s favorite sports. Bring your bathing suit and any other beach toys you enjoy.
There are groups of picnic tables south of the cement ship at Seacliff State Beach. If you are walking or driving from the cement ship, head south (left) on the road along the beach. You will start to pass picnic tables with awnings on your right. Keep going past the building with the bathrooms and showers. Up ahead you’ll see a large tree by a couple groups of picnic tables; we will try to get the picnic tables by that tree. Look for the picnic tables with crimson tablecloths (Kevin’s favorite color). Directions and parking information for Seacliff Beach are at the bottom of this post.
Thank you to everyone who has supported us through the last year. We have especially appreciated your love this week. We hope to see you Thursday (5:30 p.m.) at Twin Lakes and Saturday (11 a.m.) at Seacliff Beach.
Directions to Seacliff State Beach:
From Hwy 1, take the State Park Drive exit and head west on State Park Dr. Keep straight on State Park Dr. until you get to the State Park kiosk. After paying the state park fee (around $8), continue down the hill. At the bottom of the hill, turn left at the split. Drive past the pier to the cement ship, continue past the bathrooms and showers, and look for us at picnic tables near the pine tree on your right. If there is no parking by the picnic tables, you will need to head back up the hill and park in the lot on top of the cliffs. That lot is still considered inside the state park, so you still need to pay for parking here. Stairs to access the beach are at the south corner of this parking lot. Take valuables with you; don’t leave them in your car.
Directions to Rio Del Mar (where you can park for free and walk into Seacliff):
From Hwy 1, take the Rio Del Mar exit. Head west on Rio Del Mar Blvd. Follow Rio Del Mar Blvd for about a mile and a half; it will wind through neighborhoods and head down a steep hill. From this hill, you will see Seacliff’s cement ship straight ahead of you. At the bottom of the hill, navigate through the traffic circle. You can try to look for parking in the lot straight ahead of you, but that lot is often full. The best bet for parking is to make a 90 degree right turn onto Aptos Beach Dr. After a couple blocks, parallel park along this road, or turn down one of the side streets to parallel park in the neighborhood. Again, it’s probably best to keep valuables with you or hide them well in your car.
To walk to Seacliff Beach, walk back to the bizarre traffic circle at the intersection of Aptos Beach Dr. and Rio Del Mar Blvd. Cross the streets over to the beach. When you hit the sidewalk next to the sand, turn right. Follow the sidewalk along the bridge over the creek. Keep following the sidewalk, and we should be at the second cluster of picnic tables.
Over the past few days, we have been sorting through pictures of Kevin. Tears have come to our eyes, but more often, we have smiled as we happen upon a forgotten memory or a photo that captures Kevin’s pure joy. He lived a full life, packed to the brim with activities and people he loved. His smile has been shining at us from these photos, and we can only answer it with our own. We’d like to follow Kevin’s example of a life lived with joy, love and passion; so, a beach party is in order.
Please bring a dish and a story to share. We will have at least one grill, so foods that need to be barbecued are welcome. There will be a beach volleyball net and boogie boards so we can participate in a couple of Kevin’s favorite sports. Bring your bathing suit and any other beach toys you enjoy.
There are groups of picnic tables south of the cement ship at Seacliff State Beach. If you are walking or driving from the cement ship, head south (left) on the road along the beach. You will start to pass picnic tables with awnings on your right. Keep going past the building with the bathrooms and showers. Up ahead you’ll see a large tree by a couple groups of picnic tables; we will try to get the picnic tables by that tree. Look for the picnic tables with crimson tablecloths (Kevin’s favorite color). Directions and parking information for Seacliff Beach are at the bottom of this post.
Thank you to everyone who has supported us through the last year. We have especially appreciated your love this week. We hope to see you Thursday (5:30 p.m.) at Twin Lakes and Saturday (11 a.m.) at Seacliff Beach.
Directions to Seacliff State Beach:
From Hwy 1, take the State Park Drive exit and head west on State Park Dr. Keep straight on State Park Dr. until you get to the State Park kiosk. After paying the state park fee (around $8), continue down the hill. At the bottom of the hill, turn left at the split. Drive past the pier to the cement ship, continue past the bathrooms and showers, and look for us at picnic tables near the pine tree on your right. If there is no parking by the picnic tables, you will need to head back up the hill and park in the lot on top of the cliffs. That lot is still considered inside the state park, so you still need to pay for parking here. Stairs to access the beach are at the south corner of this parking lot. Take valuables with you; don’t leave them in your car.
Directions to Rio Del Mar (where you can park for free and walk into Seacliff):
From Hwy 1, take the Rio Del Mar exit. Head west on Rio Del Mar Blvd. Follow Rio Del Mar Blvd for about a mile and a half; it will wind through neighborhoods and head down a steep hill. From this hill, you will see Seacliff’s cement ship straight ahead of you. At the bottom of the hill, navigate through the traffic circle. You can try to look for parking in the lot straight ahead of you, but that lot is often full. The best bet for parking is to make a 90 degree right turn onto Aptos Beach Dr. After a couple blocks, parallel park along this road, or turn down one of the side streets to parallel park in the neighborhood. Again, it’s probably best to keep valuables with you or hide them well in your car.
To walk to Seacliff Beach, walk back to the bizarre traffic circle at the intersection of Aptos Beach Dr. and Rio Del Mar Blvd. Cross the streets over to the beach. When you hit the sidewalk next to the sand, turn right. Follow the sidewalk along the bridge over the creek. Keep following the sidewalk, and we should be at the second cluster of picnic tables.
Friday, October 8, 2010
Kevin's Remembrance
The following is the remembrance that will run in the Santa Cruz County papers this weekend:
Kevin Bradley Williams, aged 22, passed away at sunset on October 4, 2010. He died peacefully in the loving embraces of his fiancée, Kathlin Ramsdell, his mother Carolyn, his father Rich and his sister Stacy. Kevin’s close friend Tyler Domsic, who flew in from Sweden that afternoon, was also by Kevin’s side. Kevin bravely fought an inoperable brain tumor for the last year of his life, demonstrating courage and strength in trying to beat the unbeatable.
Kevin grew up in Aptos attending Valencia Elementary, Aptos Jr. High and Aptos High. He was captain of both the Aptos High water polo and volleyball teams. Kevin graduated fourth in Aptos High’s Class of 2006. Kevin was a long time Cabrillo Thresher, played Bear Club volleyball and enjoyed disc golf. He “loved the tube,” so he frequently kneeboarded at the Hook and Manresa. Kevin shredded, jumped off cornices and submerged himself in powder most winter weekends at Kirkwood. During his high school summers, Kevin was employed by Radiology Medical Group of Santa Cruz County.
Kevin considered upstate New York his second home. Kevin and his beloved Kathlin were on track to graduate with honors from Colgate University’s class of 2010. There, Kevin was captain of the water polo team, raced on the ski team, double majored in Geography and Geology, was in the Geography honor society and made the dean’s list every semester. Kevin and Kathlin’s love for earth science and the outdoors led them to spend a semester at Canterbury University in Christchurch, New Zealand. Kevin and Kathlin traveled in a campervan while they saw as much as they could of the North and South Islands’ geologic and geographic diversity. As a Fellow at the Upstate Institute for two summers, Kevin used his geography training to work on land use issues in Cazenovia, NY.
Kevin understood the preciousness of life. During his 22 years, Kevin experienced more joy, laughter and love than many experience in a long lifetime.
A celebration of Kevin’s life will be held at Twin Lakes Church in Aptos on Thursday, October 14, at 5:30 p.m. In lieu of flowers, contributions towards a permanent memorial in the Geography/Geology Departments can be made to the Kevin Williams Memorial Fund at Colgate University. Make checks payable to Colgate University, and specify “Kevin Williams Memorial Fund” on the memo line. Send donations to Colgate University, Gift Records, 13 Oak Drive, Hamilton, NY 13346.
Kevin Bradley Williams, aged 22, passed away at sunset on October 4, 2010. He died peacefully in the loving embraces of his fiancée, Kathlin Ramsdell, his mother Carolyn, his father Rich and his sister Stacy. Kevin’s close friend Tyler Domsic, who flew in from Sweden that afternoon, was also by Kevin’s side. Kevin bravely fought an inoperable brain tumor for the last year of his life, demonstrating courage and strength in trying to beat the unbeatable.
Kevin grew up in Aptos attending Valencia Elementary, Aptos Jr. High and Aptos High. He was captain of both the Aptos High water polo and volleyball teams. Kevin graduated fourth in Aptos High’s Class of 2006. Kevin was a long time Cabrillo Thresher, played Bear Club volleyball and enjoyed disc golf. He “loved the tube,” so he frequently kneeboarded at the Hook and Manresa. Kevin shredded, jumped off cornices and submerged himself in powder most winter weekends at Kirkwood. During his high school summers, Kevin was employed by Radiology Medical Group of Santa Cruz County.
Kevin considered upstate New York his second home. Kevin and his beloved Kathlin were on track to graduate with honors from Colgate University’s class of 2010. There, Kevin was captain of the water polo team, raced on the ski team, double majored in Geography and Geology, was in the Geography honor society and made the dean’s list every semester. Kevin and Kathlin’s love for earth science and the outdoors led them to spend a semester at Canterbury University in Christchurch, New Zealand. Kevin and Kathlin traveled in a campervan while they saw as much as they could of the North and South Islands’ geologic and geographic diversity. As a Fellow at the Upstate Institute for two summers, Kevin used his geography training to work on land use issues in Cazenovia, NY.
Kevin understood the preciousness of life. During his 22 years, Kevin experienced more joy, laughter and love than many experience in a long lifetime.
A celebration of Kevin’s life will be held at Twin Lakes Church in Aptos on Thursday, October 14, at 5:30 p.m. In lieu of flowers, contributions towards a permanent memorial in the Geography/Geology Departments can be made to the Kevin Williams Memorial Fund at Colgate University. Make checks payable to Colgate University, and specify “Kevin Williams Memorial Fund” on the memo line. Send donations to Colgate University, Gift Records, 13 Oak Drive, Hamilton, NY 13346.
Thursday, October 7, 2010
Call for Reflections
You all have many fond memories of Kevin and reflections about his life, and we would love for you to share them at Kevin’s service on Thursday, October 14th. We regret that we can’t have everyone speak, but if you have something in particular you would like to share (up to 3 minutes), please email your name and some thoughts about what you’d like to say to KevinWilliamsBlog@gmail.com
Thanks in advance, and we look forward to hearing your reflections and stories.
Thanks in advance, and we look forward to hearing your reflections and stories.
Wednesday, October 6, 2010
Kevin's Service
Kevin’s memorial service will be held Thursday, October 14th at 5:30 p.m. at Twin Lakes Church in Aptos, CA. The invitation is open to everyone who has been touched by Kevin’s short life.
The address for Twin Lakes Church:
2701 Cabrillo College Dr., Aptos, CA
Directions to Twin Lakes are available here. For those of you coming from the Bay Area, see the last paragraph for extra tips about avoiding rush-hour traffic.
We are also hoping to have an informal outdoors celebration of Kevin’s life Saturday, October 16th or Sunday, October 17th. We will keep you informed when we know more. There will also be memorials of some shape at Kirkwood and Colgate at a later date.
Kathlin, Mom, Dad and I sincerely thank the many communities in which Kevin was involved for your outpouring of support. It would be impossible for us to face Kevin’s passing without your love. Thank you for sharing how Kevin has touched your lives. Your many memories of him divert our attention from the fact that he was taken from us much too soon; instead, your stories help us focus on the wonderful, loving and joyous person he was. Your memories will help this positive image of him to live forever in our hearts and minds. We would love for you to join us on Thursday, October 14th.
If you are coming from the Bay Area, we have a tip for avoiding traffic. At rush hour, Highway 17 can get very backed up coming into Santa Cruz, so we suggest that you build extra time into your schedule. We also have a recommendation for a “side road” that you can take in order to avoid the last half of Hwy 17. After you pass the town of Los Gatos, drive 7 more miles on Hwy 17. Exit to your right onto Summit Road. The exit ramp will loop you around; turn right onto Summit Road in order to go over the freeway. Drive along Summit Road for 4 miles, then turn right onto Soquel San Jose Road (I believe there are signs for Santa Cruz or Soquel). Follow Soquel San Jose Road (or Old San Jose Road) for 11 miles. Then, turn left onto Soquel Drive. Follow Soquel Dr. for just over a mile, then turn right onto Park Ave. After .2 miles, turn left at Cabrillo College Drive. After .7 miles, Twin Lakes Church will be on your left.
The address for Twin Lakes Church:
2701 Cabrillo College Dr., Aptos, CA
Directions to Twin Lakes are available here. For those of you coming from the Bay Area, see the last paragraph for extra tips about avoiding rush-hour traffic.
We are also hoping to have an informal outdoors celebration of Kevin’s life Saturday, October 16th or Sunday, October 17th. We will keep you informed when we know more. There will also be memorials of some shape at Kirkwood and Colgate at a later date.
Kathlin, Mom, Dad and I sincerely thank the many communities in which Kevin was involved for your outpouring of support. It would be impossible for us to face Kevin’s passing without your love. Thank you for sharing how Kevin has touched your lives. Your many memories of him divert our attention from the fact that he was taken from us much too soon; instead, your stories help us focus on the wonderful, loving and joyous person he was. Your memories will help this positive image of him to live forever in our hearts and minds. We would love for you to join us on Thursday, October 14th.
If you are coming from the Bay Area, we have a tip for avoiding traffic. At rush hour, Highway 17 can get very backed up coming into Santa Cruz, so we suggest that you build extra time into your schedule. We also have a recommendation for a “side road” that you can take in order to avoid the last half of Hwy 17. After you pass the town of Los Gatos, drive 7 more miles on Hwy 17. Exit to your right onto Summit Road. The exit ramp will loop you around; turn right onto Summit Road in order to go over the freeway. Drive along Summit Road for 4 miles, then turn right onto Soquel San Jose Road (I believe there are signs for Santa Cruz or Soquel). Follow Soquel San Jose Road (or Old San Jose Road) for 11 miles. Then, turn left onto Soquel Drive. Follow Soquel Dr. for just over a mile, then turn right onto Park Ave. After .2 miles, turn left at Cabrillo College Drive. After .7 miles, Twin Lakes Church will be on your left.
Monday, October 4, 2010
Rest in Peace
Kevin passed away this evening at sunset. We kept him comfortable throughout the day. He had increasing difficulty breathing, but we gave him enough medication to keep him comfortable. His passing was calm and peaceful. He did not appear to be in any pain and was not agitated. We realized his time was limited about 30 minutes before he died, so we all got a chance to say goodbye.
Tyler, one of Kevin’s friends from childhood, flew in from Sweden this afternoon. Tyler made it to our house this afternoon and sat at the foot of Kevin’s bed for the last few hours of Kevin’s life.
Kathlin, Mom, Dad, Tyler and I surrounded Kevin when he passed away.
Kevin lived much longer than any doctors predicted back in January. There were people back then who wrote Kevin off, and he made it to October. Kevin worked very hard and struggled a lot during that time, but he also had several small and sacred victories. There were also some fun and joyous moments we got to share as a family that would have never materialized if he had passed in January. While we’re devastated to lose Kevin now, we have been blessed with ten months with Kevin that many people expected we wouldn’t have.
We send countless thanks to the thousands of you for your love throughout Kevin’s illness. We will keep you informed about services.
Tyler, one of Kevin’s friends from childhood, flew in from Sweden this afternoon. Tyler made it to our house this afternoon and sat at the foot of Kevin’s bed for the last few hours of Kevin’s life.
Kathlin, Mom, Dad, Tyler and I surrounded Kevin when he passed away.
Kevin lived much longer than any doctors predicted back in January. There were people back then who wrote Kevin off, and he made it to October. Kevin worked very hard and struggled a lot during that time, but he also had several small and sacred victories. There were also some fun and joyous moments we got to share as a family that would have never materialized if he had passed in January. While we’re devastated to lose Kevin now, we have been blessed with ten months with Kevin that many people expected we wouldn’t have.
We send countless thanks to the thousands of you for your love throughout Kevin’s illness. We will keep you informed about services.
Sunday, October 3, 2010
Difficulty Breathing
I thought I should post a very short update to keep you all in the loop. Kevin hasn’t improved since my last post; the symptoms of extremely decreased movement and inability to talk or eat are still present. Furthermore, he is having a hard time with breathing. He has always had difficulty swallowing because the tumor is in an area of his brain stem that controls that function. Therefore, it’s tough for him to clear his throat or swallow. Kevin is now also losing some control of his diaphragm, which makes it even harder for him to breathe deeply or cough. He is still on oxygen, and we have a suction machine from Hospice that helps him clear his throat. Despite these problems with breathing, we’ve been trying to keep him as comfortable as possible. All things considered, he’s been sleeping relatively well. He still doesn’t allow Kathlin away from his side for very long; she’s the best source of comfort he can get.
I’m sorry to bring more bad news (or at least no good news). Please continue to keep Kevin in your thoughts and prayers.
I’m sorry to bring more bad news (or at least no good news). Please continue to keep Kevin in your thoughts and prayers.
Wednesday, September 29, 2010
Thank You
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.
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.
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!
