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

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.

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.

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

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.

Santa Cruz Sentinel

Yesterday, a reporter from the Santa Cruz Sentinel visited us. She wrote an article about Kevin for today’s paper. You can access the article here.

Also, you can read Kevin's remembrance in the Sentinel here.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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!

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!

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.

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.

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?

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.

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!

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.

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!

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!

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!!!

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.

Solar Showers

Another successful trip into the Outpatient Oncology Unit today. Only one I. V. was administered this week as per schedule. The Oncologist was happy with Kevin's presentation. Kevin's vitals were great overall. His weight did jump 6 lbs....what a bit too much chocolate birthday cake, cupcakes, and candy will do. Luckily the rest of us did not have to get on a scale too! I swear, after we finish up that last chocolate grenache cake from the Buttery, we will be better, honest!

Kevin's bouncy vision continues to be an issue. We have been told that the first symptoms to show up will be the last to leave. Yes, bouncy vision was a problem certainly as far back as late October. Kevin also has some annoying mild headaches. Are they due to the steroid taper, bouncy eyes, or something else? Hopefully with continued treatments this too will get better.

Usually on Chemo Tuesdays Kevin takes the rest of the day off and relaxes in his "comfy chair". Today after a short rest, and a Pleasure Point Pizza slice for lunch, he worked on some therapy exercises for his trunk strength. Kathlin rewarded him with a solar shower. Since it is very difficult for Kevin to bathe inside with our shower/tub on the first floor, we have rigged up an outdoor camp shower on our sunny back deck. The water heats up nicely, as long as the morning fog clears out. We can easily wheel his chair right in and take care of business. Kevin stays nice and warm sheltered from the breeze. By the time they are finished, Kathlin usually ends up pretty sweaty. Unfortunately the solar heated water bag has been drained by then with no water left for her!

*contributed by Mom while Stacy is camping in Colorado

Cards from all Over

*Stacy is out of communication this week camping in the Rockies, so Mom is filling in for the next several days.

Kevin is still working his way through the birthday cards. He has made it through 219 with roughly 50 left to go. Gives new meaning to birthday "week". Kevin hasn't minded the extra speech practice of telling Kathlin what your connections are to him. Of course we also get to share who some of you are as well. Thank you for such inspiring words. The positive energy that flowed from your cards has given Kevin, and all of us, quite a boost.

Cards came in from Canada, England, France, Scotland, and the Netherlands, as well as from California, Hawaii, Washington, Colorado, Arizona, Nevada, Montana, Minnesota, Nebraska, Illinois, Michigan, Maine, Connecticut, Massachusetts, New York, New Jersey, Pennsylvania, Maryland, Virginia, Washington DC, and Florida. How fitting for a Geography/Geology major!

Kevin accomplished another milestone this week. Friday evening he went on his first social outing. Close friends recently built a pizza oven for their outdoor patio. We enjoyed assembling yummy pizzas to be baked and shared family style. Kevin got to pick his choice of ingredients which were: pesto, mozzarella, goat cheese, Parmesan, chicken basil sausage, and caramelized onions on a olive oil brushed crust. The evening was fun but chilly. Kevin was pretty exhausted by the end, but as he said, "I have all weekend to rest."

After the Excitement

Kevin had a wonderful birthday, and much of that success is due to all of you—friends, family, friends of friends and so on. We now have a ridiculous amount of chocolate cakes, cupcakes and candy in the house, but that’s not the worst problem to have! Kevin has been enjoying dessert samplers every evening.

The birthday cards also were a huge hit. We put all the cards in a big wrapped box (pictured in the post below... that's about twice the size of a shoe box). When Kevin took the lid off the box, he squeaked out an overwhelmed “wow” before his eyes teared up. This was a great way to show him how much support he has. When all the messages of support come at once, it’s so much easier to comprehend how many people are out there thinking of him. Plus, the fact that he can hold each card in his hand makes the volume much more tangible. Showing him numbers of how many people check the blog each day just doesn’t have the same impact as holding a box of a few hundred cards on his lap. We haven’t reached an exact total count yet because he’s still working on opening and reading all the cards. Thank you so much to all of you who sent cards and postcards—you’ve helped Kevin truly understand how much he is loved by you all!

Even with all the emotional excitement on his birthday, Kevin managed to keep his energy level high. On his birthday and the day after, he was able to complete some great exercises with his left side in physical and occupational therapy. The day after his birthday, he stayed active and up in his wheelchair until about 6:30 p.m.! Yesterday, the excitement finally caught up to him, and he was pretty exhausted. Once Kevin got home from speech and physical therapy, he got to rest for the remainder of the day.

Today, Kevin is very concerned about his eyes. His double vision has improved over the past couple months, but his bouncing vision remains. This was one of the first symptoms to develop back in November, so the doctors have said it may be one of the last symptoms to leave. Over the past few days, his eyes have also been watering, stinging and giving him a bit of a headache. Kevin is very worried about this, since he’s very in tune with each new symptom that arises. However, the rest of us have a hunch that this is a combination of allergies and side effects of chemotherapy rather than a new symptom. Whatever it is, we hope it resolves soon so Kevin can be a bit more at ease.

Thank you again to everyone who sent Kevin a birthday card! We hope his new comprehension of his huge support network will give him new strength to fight Steve and Bob day after day.

Happy Birthday Kevin!

Today is Kevin’s 22nd birthday. It’s a gross understatement to say we’re all happy that Kevin can celebrate his birthday this year. We’re thrilled beyond belief. To be quite frank, there were times in January, February and March when we weren’t sure if Kevin would be able to celebrate another birthday. Of course, none of us are ever 100% sure if we’ll celebrate another birthday, but looking forward to our next birthday is something that we twenty-somethings take for granted. When the reality of our mortality stares us down so intensely, birthdays seem to be much larger milestones. So, the fact that Kevin has gotten out of bed, is sitting in a wheelchair at the table and will eat Texas Sheet Cake (the birthday cake Mom has made for us since we were kids) on his birthday is extremely impressive. Combined with his current upward trend of improvement, this day is truly a cause for celebration!

Above is a picture of the birthday cards we’ve received from friends and family around the world. Thank you so much to everyone for sending them! We have yet to give him the cards and presents—he’s still working on breakfast—but tomorrow I will report how he liked seeing all of your support.

It’s a typical grey, foggy and cold summer day in Aptos, but we will try our best to make the atmosphere as warm and celebratory as possible. Just a few months ago, Kevin couldn’t sit up, speak, eat, drink, and could barely move any part of his body. Now, his movement and abilities have improved so much that his unique mannerisms are returning. There are moments when I look at him out of the corner of my eye and see the real Kevin—the healthy Kevin. There are moments when a “yeah” escapes from his mouth with completely normal inflection and his true tone of voice. We have a million of these accomplishments to celebrate today, and we’ll celebrate them the best we can. Thank you to everyone for sending in birthday cards or postcards. We really appreciate you all sending in a physical showing of your support! Happy 22nd Birthday Kevin!

Learning to Walk

On Thursday, Kevin had a great day in physical therapy. He began working on the parallel bars, which the therapists use to teach patients to walk. The patient helps hold their body up with their arms on the bars, and they can walk between them. Kevin didn’t do the motions by himself; the therapist helped direct his arms and legs. However, the point remains that he has started to take some steps toward walking!

When Kevin gets home from physical therapy, he usually wants to sit in the blue reclining “comfy chair” to relax and take it easy. However, after the amazing physical therapy session on Thursday, he wanted to sit up at the table for lunch in his wheelchair. He didn’t get into the comfy chair until after 3 p.m. We’re thrilled that his attitude seems to have improved—he’s willing to take on new challenges and exert a lot of effort nearly every day.

Kevin has tried a new milkshake from Marianne’s that he really likes. However, it isn’t technically a chocolate shake, so it can’t go on the rankings list, but I’ll mention it here. Kevin took one sip of the Heath Bar milkshake and made a face, so Mom and Kathlin thought the shake was too cold and gave him a brainfreeze. However, the face meant that he was amazed at how good it tasted!

So far, we have received about 145 birthday cards! Thank you so much to all of you for sending birthday wishes to Kevin and showing your support. The cards and well wishes will really mean a lot to him, so thank you, thank you, thank you!

Joys of Food

Tuesday morning, Kevin received more chemotherapy. The Dominican Hospital oncologist who oversees Kevin’s care in Santa Cruz hadn’t actually seen Kevin for a month. Kevin was worried that he hadn’t made enough progress for the oncologist to be impressed, which was one of those things that we simply couldn’t convince him otherwise. It’s tough for Kevin to believe that he’s improving when he has heard that so many times before. Of course, though, the oncologist gave Kevin a thumbs up today—he was very happy with how Kevin looks and the coordination and muscle strength he can display.

Kevin got through the chemotherapy appointment well. On the way home, they stopped at Pleasure Pizza for dollar Tuesdays (for those of you not from Santa Cruz, Pleasure Pizza sells darn good dollar cheese slices on Tuesdays). The whole family got to enjoy dollar slices once they got home from the hospital, which was a great reward for an appointment well done.

On the topic of eating, we have recently been thinking about how Kevin’s eating has vastly improved. When Kevin was in the Dominican Rehab hospital, it took him hours to complete a meal, and he often needed Ensure shakes to supplement the calories. Heck, in February, Kevin was receiving nutrition and calories strictly through his stomach tube. Now, only four months later, he’s almost eating at a normal pace again. He almost can finish a meal faster than I do—but that’s not saying much, because I eat very slowly! But he is now able to get all his calories by mouth, and we can’t remember the last time he had an Ensure.

Kevin’s outpatient physical, occupational and speech therapy sessions continue to go well. Each day he goes into therapy is a big outing that tires him out, but he’s continuing to do well in therapy. Kathlin, Mom and Dad are great at remembering the exercises that the therapists do with Kevin so that they can replicate the therapy at home.

The birthday cards have started pouring in—thank you so much! If you haven’t sent one in yet, you still have time, so go ahead and drop one in the mail. I’ll have to post a picture of how many cards Kevin receives. He really appreciates all of your support and love, so anything we can do to remind him of it definitely improves his mood. Thanks again!

Luminaria

We’d like to thank the several people around the country who have participated in Relay for Life events over the past few months. A few months ago, I mentioned the Colgate Relay for Life and the one our cousin Patrick walked in. Many more people who are in Kevin’s support network have also walked. Accompanying this post are a few pictures of the “luminary” bags that have been decorated for Kevin by more friends across the country. Another Relay took place last night at Cabrillo College in Aptos, and there was definitely support expressed for Kevin there. Thank you to everyone who has participated in a Relay in Kevin’s honor!

Kevin continues to improve on various things every day. The improvements are small, but sometimes can take us by surprise. I walked into Kevin’s room last night to ask if he wanted cookies for dessert, and he said in a perfectly clear and un-slurred voice, “I do want a cookie, but I probably shouldn’t,” seen as he had just finished half of a Snickers bar. My jaw dropped at how crisp his words were, and I told him he could have a cookie because his speech sounded so good.

Overall, his mood has improved as well. Yesterday he was a bit bummed out, but in general over the past week, he’s been pretty upbeat and positive, considering what he’s going through. He’s been smiling and laughing more often. He’s also been more actively engaged in his surroundings and feels more comfortable inserting comments into a situation. For example, when we were getting him out of the car one morning for outpatient therapy, Kevin reminded us to hang up the handicapped placard on the rearview mirror. He’s heard me sneezing like crazy (it’s a tough year for my allergies), and once when I walked through the room he was in, he stopped me and commented on how bad my allergies must be. A few weeks ago, he didn’t seem nearly as aware of his surroundings, and he didn’t feel confident enough to talk more than was absolutely essential.

Because of the up-and-down route we’ve had thus far, it’s hard for all of us to get too excited about the progress Kevin is making. However, the improvements this time around seem to be occurring more quickly and compounding to create even better progress.

Thank you for beginning to send in birthday cards! This will be a great way for Kevin to comprehend how much support he has around the world. His birthday is in a little over a week, so if you haven’t yet sent a card or postcard, there’s still time. Thank you again for being part of such a wonderful support network for Kevin and our family!

Upstairs

For the first time since he’s been home, we got Kevin to the upstairs floor of our house. On Sunday, Dad, Mom, Kathlin and I managed to carry Kevin upstairs (and back down again) while he was sitting in a plastic deck chair. When we split his weight between the four of us, Kevin wasn’t too difficult to carry. He kept laughing while we were carrying him in the chair because he felt like a king. We just needed a couple friends fanning him with palm fronds, and the scene would have been complete.

Once Kevin was upstairs, he watched the World Cup final game with the rest of the family. However, the game was made so slow and boring by the continuous fouling, so Kevin nearly fell asleep several times. He managed to shake himself awake to see the end of the game. Later that afternoon, he watched the preparation of Reuben sandwiches in our kitchen. We have been working through Kevin’s special requests for food, and Reubens was on his list. They enjoyed a late lunch / early dinner of what they described as awesome Reuben sandwiches. The sandwiches were all the more amazing because it was Dad’s first time making them, and he put in a lot of effort—he slow-cooked the corned beef for a couple days and made the cabbage from scratch. Kevin said it “felt like torture” to be in the kitchen and not be able to do anything, but we have since then talked with him about that. We are encouraging him to take that negative feeling of helplessness and turn it into something positive. If it feels horrible to not do anything, then next time he’s up there, we’ll make sure that he can do something. Plus, if he wants to do something that badly, he has a lot of incentive to practice the movements and work on it.

In previous weeks, Kevin has gotten nauseated on the Sunday nights that follow a Tuesday chemotherapy session. However, this Sunday he didn’t have any problems. We made sure we were staying on top of his nausea with anti-nausea medications, and he got through the afternoon and evening just fine.

Kevin is getting closer to being entirely off the oral steroids he’s been on since November. He is now at a very low amount per day. This is great news—it means his body is getting closer to handling the swelling on its own. However, the tough part at this stage of the weaning is the emotional and mental side effects of the steroids. Kevin’s body has grown so accustomed to having the steroids, so now that he is almost off of them, his body is trying to chemically rebalance, and his emotions are getting thrown all out of whack. Kevin needs a lot of pep talks and reminders about how well he’s doing, because his own brain likes to tell him otherwise while “the steroids are talking.” In the room where Kevin hangs out most of the time, we’ve started sticking post-its listing things he can now do that he couldn’t do just a few months ago. The progress is going so slowly that Kevin sometimes forgets he’s improving. However, when he’s reminded that he couldn’t eat a few months ago, he realizes how far he has come.

Three Chemotherapies

On Tuesday, Kevin received all three chemotherapy medications that he is currently taking. The appointment was a long one; he was at the hospital from 9 a.m. to 1 p.m. However, he managed the appointment and the trip to and from the hospital well. The Netherlands/Uruguay soccer game on TV helped the appointment go a bit faster—plus, Kevin, Kathlin, Mom and Dad were happy they got to see the entire game!

After the major dose of chemo on Tuesday, we have been keeping a close eye on Kevin’s nausea and coughing. So far this week, he hasn’t had many major problems (knock on wood!). He has been coughing a bit more, which always makes us nervous because it might mean he isn’t controlling his secretions well. For those of you keeping close track, the secretions, coughing and swallowing issue is one of the main symptoms Kevin has been dealing with since he got sick. However, Kevin’s coughing hasn’t prevented him from eating well over the past few days, and he’s managed to keep up a good appetite. He has a new favorite milkshake: the Mexican Chocolate shake from Marianne’s. The cinnamon and chocolate combination seems to hit the spot—he even requested the shake a second time this week.

Today Kevin starts outpatient therapy. Mom, Dad, Kevin and Kathlin have just left for a long appointment for speech and physical therapy evaluations. After today, we will get a feel for how Kevin handles traveling to therapy.

We have thought of another way that you all can show Kevin your support. Kevin’s 22nd birthday is on July 27th. Since it’ll be an extremely emotional day for Kevin, he won’t be up for a huge party. However, we want to continually remind him how much support he has out there, so we thought of another way for you all to give him birthday wishes. It would be wonderful if each of Kevin’s supporters sent him a birthday card or postcard via “snail mail.” We will collect the cards as they come in. Presenting all the cards at once to Kevin on his birthday would be an impressive physical showing of just how many of you are cheering him on.

You can send postcards or birthday cards (no packages please!) to:
Kevin Williams
240 Quail Run
Aptos, CA 95003-9565

Thank you so much for your continued support and readership of the blog. If you feel like taking a few moments to write Kevin a birthday card or postcard, please do! Even if you don't directly know Kevin well or know him through someone else, receiving cards from you all will show him just how many people are thinking about him. Feel free to send the cards at any time; we’ll collect those that come in early and save them for his birthday. Also, thank you for the great suggestions for podcasts and geology / geography videos—if you think of any others, please pass them on!

Happy Fourth of July!

Kevin continues to do well at home. He has completed the sessions of physical, occupational and speech therapy at our house. There were a limited number when the therapists could come to Kevin. Now, we will give outpatient therapy a try. This will be a larger ordeal and more difficult for Kevin because of the car trip to and from appointments, but we’re still going to give it a shot.

In the last couple sessions of occupational therapy at our house, the therapist was working on playing games with Kevin. Holding a hand of cards and placing a single card down on the table is very difficult for Kevin because it requires fine motor skills, but he’s willing to practice the motions and play some games. The other day, he managed to beat Kathlin and the occupational therapist at “Go Fish!” He’s also been playing (and doing very well at) “Turkeyfoot,” a traditional Williams family game that’s similar to dominos.

The Colgate community continues to be extremely supportive and helpful for Kevin and us throughout this process. We’d like to thank Kevin’s Colgate friends who have flown out or stopped by on their road trips to California. It’s been wonderful for Kevin and Kathlin to see you and reconnect to their life back at Colgate. Thank you so much for your visits, and please continue to stay in touch with Kevin and Kathlin!

We also just received a list of interesting online lectures and podcasts from a few of Kevin’s Colgate professors. We have been searching for things to engage Kevin’s mind, but it’s difficult when he can’t yet read books or articles. Kathlin has been reading him some Geography and Geology things, but we’re excited to have Kevin start listening to and watching these USGS lectures, climate change podcasts and other material. Please let us know if any of you have suggestions for videos or podcasts that would stimulate Kevin’s mind (without requiring him to read anything). Anything relating to Geography or Geology is wonderful, but anything interesting on other topics is also welcome. Thank you again to the Colgate professors for the suggestions.

Happy Fourth of July to everyone—we hope you have a wonderful holiday!

A Bit of Nausea, A Bit of Improvement

So far (knock on wood), Kevin has only gotten nauseated once after his latest round of chemo. He received chemotherapy on Tuesday, and he got sick on Sunday. We are pretty sure this nausea was due to chemotherapy because two weeks earlier, Kevin got sick on Sunday night after Tuesday chemotherapy. So, in the future, we’ll b extra careful about Kevin’s anti-nausea medications on the Sunday after his chemotherapy! However, since Sunday night, Kevin’s nausea hasn’t been an issue.

While it’s difficult for Kevin and people who see him every day to notice any improvement, progress is definitely noticeable when one doesn’t see Kevin for several days. Last week, my friend Emma and I drove Kevin’s car and belongings home from New York, so I spent about six days away from home. When I returned, I noticed significant improvement in Kevin’s symptoms. Kevin’s speech was much more clear and strong. His feet looked infinitely better; the swelling has decreased enough that he’s now able to wear shoes for transfers and physical therapy sessions. I have started helping out with “edge-of-bed” exercises, in which Kevin sits on the edge of the bed to work on balancing, sitting up straight and strengthening his torso. I was blown away by how well he’s doing; on Sunday, he spent nearly an hour sitting up on the edge of the bed. He is now able to look at himself in the mirror to see which small adjustments he should make to correct his posture. Of course, Kevin doesn’t really acknowledge his improvement because his progress isn’t as fast as he would like, but Kathlin has started to tell Kevin that his opinion no longer counts on this matter! When I returned from the cross-country drive, I could definitely see that Kevin has improved.

We just received news that Kevin’s platelets are 229,000! This is the highest they have been since he got sick in November. His low platelet levels have always been an issue—for a while they were hovering around 50,000. When his platelet levels get too low, doctors scale back treatment such as radiation and chemotherapy. However, now that Kevin’s platelets seem to be doing very well, we may ask about giving Kevin stronger chemotherapy treatments.

The pictures posted today are of the paper chain and cranes made by middle school students at the school where our Aunt Ellen teaches. The chain is so long that it doubles back along our entire banister, and many of the links on the chain have good wishes or words of encouragement written on them. The students also made a few long chains of paper cranes. The chain and cranes add a lot of color and cheer to our house. Thank you to everyone who is thinking of Kevin and sending him good wishes in whatever form you can!

Belated Father's Day and Chemo

The past week has gone relatively well for Kevin. The last drop in the level of steroids was tough for the first few days, but it seems that his body has now adjusted to the lower level. He’s able to swallow and eat a bit better—until he makes the next drop down in steroids!

Kevin also received another round of Avastin on Tuesday. This is the chemotherapy he receives every two weeks. The appointment went well, and he was at the hospital for a shorter amount of time than previous visits. The doctors were impressed with Kevin’s improvement since the last time they saw him. Because of everything that Kevin has been through, he has a tough time believing doctors when they tell him he’s improving. However, we might have finally been successful in convincing him that the doctor was telling the truth.

After the last chemotherapy administration, Kevin got very nauseated for the next few days. However, that doesn’t seem to be as much of a problem this week (knock on wood). We are trying to stay more on top of giving him his anti-nausea medications.

When Dad walked into Kevin’s room on the morning of Father’s Day, Kevin surprised Dad by pulling a card from under the blankets and saying, “Happy Father’s Day!” Kevin had actually signed the card as well. His handwriting is not wonderful; however, it’s much better than it was when I last saw it a few months ago. When Kevin was in the ICU, had a tracheostomy and couldn’t talk, he would often try to write in order to communicate. Back then, we sometimes couldn’t decipher Kevin’s handwriting, but his name on Dad’s card was pretty clear!

Kevin has also been performing well in his physical, occupational and speech therapy sessions. His feet have greatly improved over the past week; they’re still a bit swollen, but not nearly as swollen and red as they were before. Kevin’s feet are also a bit less painful for him, so he is able to do a few more transfers.

The home environment is much more relaxing and enjoyable than living in the hospital. A while ago, when both the physical and occupational therapists were at the house working with Kevin, a family of deer, babies in tow, paraded across our lawn. Kevin’s window looks out onto the lawn, so the therapists, Kevin and Kathlin got to watch the deer family cruise by. That’s not usually a sight seen from a hospital bed! We hope the relaxing environment will continue to be good for him and will help foster more improvement.

Trying to Resolve Some Issues

Kevin’s feet have started to improve over the past few days. They are still very swollen and red, but they are a bit less painful for Kevin. His feet have caused some interference with physical therapy, so he hasn’t been able to practice in the standing frame recently, but he is still transferring in and out of chairs, sitting outside in the wheelchair and working a lot on occupational therapy exercises.

Our best guess is still that this swelling is a side effect of one of the chemotherapy drugs. Plus, the partial blood clots in both his legs do not help his circulation, so the clots are probably exacerbating the situation. These are the same clots that were discovered at Santa Clara Valley’s rehab hospital—Kevin still has a filter to prevent the clots in his legs from moving to his heart. We’re happy that his feet are less painful, but we’d like them to return to normal a bit more quickly!

We’re also working on tapering Kevin off the oral steroids he’s been on for months. He’s down to a low level, but with each drop down a milligram, his symptoms get a bit worse. The steroids decrease the swelling around the tumor, but each time we try to taper the steroids, the swelling increases a bit until his body readjusts to the new level. At this point, he can only eat soft foods because the swelling has affected his swallowing, but we’re hoping that within a few days he’ll be able to eat regular food again.

Kevin continues to enjoy being home. He is able to sit outside on the deck, and he watched Kathlin and I give Chammy a bath a couple days ago. Kathlin is also convinced she can teach Scooter, our cat, how to sit. She gives Scooter a treat every time he sits on command; I’m not sure if Scooter actually realizes what he’s doing and why he gets a treat, but Kevin gets a kick out of the cat eventually sitting on command! Kevin still enjoys watching the Food Network, and he’s also been watching a bit of the World Cup. It’s a good thing we got satellite TV installed; NBC and a couple Spanish channels wouldn’t have been very entertaining.

Thank you to everyone for your support, tips, help and hope. Please keep sending Kevin good thoughts and prayers!

Mystery of the Swollen Feet

A new issue has arisen over the past couple of days. On Sunday, Kevin woke up with very swollen and red feet, and they caused him a lot of pain. His feet especially hurt when he attempted to bear weight on them when transferring from bed to wheelchair to recliner. We are not sure exactly what is causing this, but our best guess is that this is a side effect of one of the chemotherapies he’s taking. Dad ran in several rounds of Kevin’s bloodwork to the hospital lab, and everything came back normal—even Kevin’s platelets and potassium are at decent levels! We were worried this might be issues with blood clots (again), but after consulting several doctors and having a couple come to the house to see Kevin, the best consensus seems to be that the swollen and painful feet are a chemotherapy side effect. His feet had improved today, and hopefully the swelling will continue to decrease.

The good thing through all of this is that Kevin’s nausea has abated for the time being. His appetite is slowly returning, and he’s finally able to keep some food down. When he’s not nauseated, Kevin is able to sleep pretty well in his own room. The dark, foggy mornings certainly help him sleep in and get enough sleep. While it’s stressful to go through one more roller coaster dive with the appearance of yet another new symptom, we’re happy to have him home in a warmer and more relaxing environment than the hospital. Thank you all for the love you have been sending Kevin and our family. He continuously needs emotional support and motivation, so if you have anything inspirational or hopeful to tell him, please send it his way.

A New Shake and Continuing Chemotherapy

On Tuesday, Kevin received another round of Avastin, one of the chemotherapy drugs he has been taking. This was the family’s first time transporting Kevin in our car, so it was a milestone. The drive to the hospital and chemo administration went relatively well, though the chemotherapy took much longer than expected. Kevin was doing fine until he got home again, when he got nauseated and sick. He had been doing well in terms of nausea over the past few weeks—so well that we had started to forget about the anti-nausea medication. Tuesday and Wednesday, Kevin was sick pretty frequently, but he’s managed to keep some food down.

We have a new #1 shake from the Santa Cruz area: the Fudge Brownie shake from Marianne’s. At least Kevin was able to keep that down!

Everyone has been getting used to the new routine at home. Physical, speech and occupational therapists come regularly to the house to work with Kevin, and he’s frequently working on exercises with Kathlin and Dad. I’m sorry I haven’t been posting many updates lately; I’ve been pretty bogged down with writing papers for finals week, but soon I’ll be home to help out. Thank you so much for supporting Kevin!

Home Sweet Home

Kevin has had a good few days at home. He hasn’t even gotten in the hospital bed yet because he’s been enjoying being in other comfortable chairs (especially the recliner) instead. Plus, it’s a mental boost to not sit or lie in a hospital bed all day. Two days ago, Dad barbecued Corralitos bratwurst with Kevin by his side. Kevin’s been enjoying eating some different foods besides the ones he’s had to eat in the hospital for several months. While the food in the Santa Cruz hospital was decent, they had a rotation of meals, and Kevin had gone through that rotation a few times. He was ready for something different. Kevin has really been enjoying the food you all have been sending us; time seems to slide away really quickly these days, so it’s extremely convenient for my parents to run to the fridge and heat something up when Kevin is suddenly hungry. Thank you all so much for your wonderful meals!

Kevin has also been enjoying several chocolate (plus some other ingredients) milkshakes. So far, out of the Santa Cruz options, Kevin has enjoyed that rather deluxe milkshake from Cold Stone the best. The chocolate, banana and peanut butter shake from Chill Out Café had just a few too many flavors for Kevin’s taste!

Mom, Dad and Kathlin constructed their own “standing frame” for Kevin to practice standing. This is a device was in the rehab hospital’s gym; the device has support for the patient’s knees and a strap behind their rear to keep them standing. This was one of Kevin’s favorite things to work on in the gym, so they were planning to take him in a few days a week to use the frame. However, that trip may no longer be necessary, since they have created a “frame” using the deck railing, pillows and a strap. Kevin is getting better at standing, and his endurance is improving. He is also able to move his left side a little bit more.

Now that he can move his left side, Kevin wants it to be instantly back to normal, so he’s frustrated that things are going so slowly. Kevin is also constantly worrying about another setback, so it’s hard for him to fully believe in the progress he is currently making. However, he is still continuing to work very hard, and he’s exhausted by the end of each day.