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.

Kevin is Home!

Kevin and Kathlin came home this afternoon. Coming home was a bit emotional, of course, but the general report was that it feels nice to have everyone under the same roof. Kevin tried out sitting in several different chairs to see what he likes best, and hence he completed a lot of transfers from wheelchair to chair and back again. We received a recliner (which Kevin enjoys very much) from good family friends—thank you to everyone for your offers! Kevin got to watch a fair amount of satellite TV this afternoon, which is a new experience in our house. He especially enjoyed being able to watch the Daily Show and Colbert Report at 8 p.m. before going to bed!

Chammy is thrilled to have Kevin and Kathlin home, and she will probably squeal and wiggle around in circles every time she sees them for the next several days. Scooter is a bit more aloof and confused, but now he has two more people to meow at when he wants food.

We’re hoping the change of scene will give Kevin a change of pace, a bit more energy and more peace of mind. After five straight months in the hospital, it must feel nice to sleep in his own bedroom. We’re happy that Kevin is home, and we hope things will feel comfortable once we figure out new routines and roles.

Even though he’s now home, Kevin will continue to work very hard. He will still receive physical therapy sessions from a group that comes to the house to work with patients. Kevin will also continue to receive chemotherapy every couple of weeks. He still needs a lot of encouragement, support and comic relief, so if you’d like to film a greeting or post a comment that will help with those needs, please do so! Thank you very much for keeping Kevin in your thoughts and prayers.

A Few More Days

Kevin didn’t come home this week after all, but the plan is to bring him home early next week. The issue keeping Kevin in the hospital is his low potassium level. We found out that despite his very low levels of potassium, he was wasting all of the extra potassium supplements he was being given. He needed something to make him retain potassium, so a couple days ago he started a new drug to help with that. The doctors didn’t want to send him home after just having started the new drug, because if he suddenly started retaining much more potassium, they would need to quickly adjust how much supplemental potassium he receives. Too much potassium can be lethal; in fact, Dr. Kevorkian used this as one of his methods. Kevin is spending the long weekend in the hospital while his potassium levels are being closely monitored. The good news is that his potassium is coming up! He now is barely within the lower limit of a “normal” level of the nutrient. A higher potassium level should improve his strength and energy.

A call-out to our friends in Santa Cruz county: we are looking for a reclining chair, something along the lines of the La-Z-Boy style. We’d like to have one for Kevin when he comes home. We’re hoping he can recline in something comfortable other than the hospital bed we’ll have in his room. We don’t want to take anything that you’re using, but if you’ve been wanting to get rid of an old recliner, let us know and we’ll be glad to take it off your hands.

I will keep you all updated on when Kevin gets to come home. Have a wonderful holiday weekend, and I’ll be checking back in soon. Please keep up the positive thoughts and prayers for Kevin—he definitely needs every scrap of hope people can send him.

Chemotherapy Tuesday

Kevin received a few types of chemotherapy on Tuesday. The administration of the chemo drugs took a few hours, but he managed to get through it all. Slices of cheese pizza from Pleasure Pizza (dollar Tuesday!) helped get him through the day. The chemo’s nastier side effects—nausea, etc—aren’t supposed to kick in for a few days.

I drove home over the weekend to visit and help Mom and Dad reorganize and clean some of the rooms in the house. The tentative plan is to move Kevin home around the end of this week. However, plans can change from hour to hour, so nothing is ever concrete. Dad has been working very hard to figure out what equipment we’ll need and who we’ll need to bring into the home to help out, such as extra nursing help and therapists. Dad has also ordered satellite TV for the house. Up until now, we haven’t had cable or satellite TV at our house! We figured that we should cave in and get the satellite, since Kevin and Kathlin need some more entertainment besides a couple network channels that don’t come in all too well. Besides, Kevin loves the Food Network, so this will allow him to continue watching it.

Over the weekend, a family friend with a wheelchair-accessible van picked up Kevin and the family and took us down to the cliffs overlooking the ocean. Kevin hadn’t yet properly seen the ocean since he’s been sick, so it was a major achievement. The ocean has been important throughout Kevin’s life. He has always enjoyed spending time around the ocean, whether he’s boogie boarding, kneeboarding, attending beach parties or studying Marine Biology. Seeing the ocean again was probably difficult emotionally, but I hope it felt good for him to watch the waves come in and feel the ocean spray on his face.

We are trying our hardest to keep Kevin’s spirits from getting too low. He’s scared about starting new aggressive chemotherapy, but he still wants to fight and give it a chance. Even though Kevin does have many depressed moments, he is able to laugh once in a while. If you have anything to tell him that might make him smile or laugh, please send along an email or post on the blog! Thank you to everyone for your love and support.

Not Much New

I don’t have much to report, but I should keep you all informed that things are about the same. Over the past several days, Kevin has not had any huge improvements nor any large slides backwards. The lack of large improvements is very disconcerting, but we’re trying to hold onto hope, since it’s not possible to totally give up hope after all that we’ve come through.

If his bloodwork remains stable through next Tuesday, Kevin will receive a double dose of chemo: he’ll get another course of the drug he took last week, and he’ll start another, more aggressive chemotherapy that he’ll take on a more regular basis. Also, preparations to bring Kevin home are in the works. The insurance has approved Kevin’s stay in the skilled nursing facility through next Friday, at which point, he will probably move home. Mom and Dad are figuring out how to rearrange or modify the house to accommodate Kevin. He hasn’t been home since December, so we hope that getting him out of the hospital will be a welcome relief. We expect it to be a bit of an emotional shock at first, but hopefully it will be a bit more comforting to be home. It might feel nice to have our cat Scooter curling up on Kevin’s tummy and Chammy carrying around Kevin’s socks in her mouth, just like normal.

We really appreciate all your thoughts and prayers—please keep them coming!

Congratulations Colgate Grads

The Class of 2010 is graduating from Colgate today. To Kevin and Kathlin’s friends who are graduating: Kevin and Kathlin would love nothing more than to be dressed up in their caps and gowns and walking across the stage with you. We still hold out hope for the day when they both receive their diplomas as we cheer wildly in the crowd.

So much can change in seven months; in October, Kevin was captain of the Colgate water polo team, studying hard for his Geology and Geography classes and starting to stress about what to do after college. Most of you have been able to continue on your trajectories through Colgate, and now you’re about to enter the big, wide world, which probably seems a little scary—especially with this economy. However, no matter what happens, know that you always have a wonderful university and alumni network to support you. The Colgate community has supported Kevin and Kathlin through thick and thin, and I’m sure they will be more than happy to do the same for any alumni. So, get out into that scary world and take some chances to pursue what you love. A year down the line, if you don’t love what you’re doing, don’t be afraid to change paths. If there’s anything this whole experience has taught me, there’s no use doing something that you don’t enjoy! Pursue your dreams, and Kevin and Kathlin look forward to hearing about your adventures. They will also be thrilled to see you at future get-togethers and reunions. They also loved the idea of a group taking a road trip out to see them! Please keep Kevin and Kathlin in your thoughts and prayers and continue to send them your amazing support. Congratulations on all your hard work. While we’re sad that you’re leaving the campus, we’re sure that you won’t disappear from Kevin and Kathlin’s lives.

Things with Kevin have been going all right. The past several days, Kevin has been switched around through several different hospital and skilled nursing facility rooms, so he and Kathlin are pretty tired from that. I believe they’re looking forward to catching up on some more sleep. Kevin continues to wiggle his left side, which is wonderful. He also told Mom what foods he’s craving most: Texas Sheet Cake (the chocolate cake Mom has made for our birthdays all our lives) her coffee cake, and Cheesy Bavarian sausage from Corralitos Meat Market. Mom made Texas Sheet Cake, so Kevin has been enjoying that. Kevin also ate about half of a Cheesy Bavarian sausage yesterday! We hope his favorite foods will give him a mental boost and help him dig up more energy and strength.

Again, congratulations to the Colgate Class of 2010. We hope you find success out in the “real world” and continue to send Kevin and Kathlin your love and support!

Relatively Smooth

In the grand scheme of things, the past two days have been relatively stable. Kevin has not had any further setbacks. He’s been able to get up into a wheelchair for a good amount of time every day, and today he got to pet Chammy outside. Since the chemotherapy course two evenings ago, we haven’t seen many improvements quite yet. However, one notable improvement is that he’s able to slightly move his left toes and leg when he’s in bed, which is something he hasn’t been able to do for quite a while.

At this point, it looks like Kevin will move back to the skilled nursing facility tomorrow. He will not receive another course of chemotherapy for another couple of weeks. Kevin is physically and emotionally exhausted from being back in an acute care hospital, so we hope that he will be able to relax once he’s back in an environment where nurses don’t check his vital signs every few hours.

Please keep up the positive thoughts and prayers for Kevin. We knew that the process of fighting this tumor was never going to be easy, but it seems to grow more and more difficult. We are reminding Kevin to draw not only on his inner strength, but to also tap into the strength and positive energy that you all are sending him.

New Treatment Started

This evening, Kevin received the course of Avastin, the chemotherapy drug he received as a one-time deal in January. It looks like he will receive a course of Avastin every two weeks. While we’re thrilled that Kevin still has some options for fighting, we’re increasingly concerned about the side effects. Of course, one of the main side effects of Avastin is bleeding. We’re especially concerned about this, since Kevin had a huge setback in February due to bleeding in or around his tumor. We think radiation, rather than Avastin, caused that February bleeding, but regardless, now that we’ve seen the havoc wreaked by bleeding in the brain stem, we’re definitely on edge. However, if this is the best chance Kevin’s got, he’s going to give it a shot.

Kevin managed to get up into a wheelchair today for a couple hours, which is good exercise for his entire system. He went outside for a few minutes before the wind picked up, at which point they brought him back inside to try to lessen his exposure to all the pollen the wind kicks up this time of year. He’s still able to eat, which is wonderful because eating is one of his major joys in life!

Thanks to all you readers for your love, thoughts and prayers. These setbacks don’t get any easier the more times we go through them, and it’s been incredibly helpful for all of us to be supported by your strength. Thank you!

Next Steps

It turned out that Kevin did not have to make the trip over the hill to Stanford today. Dad did a wonderful job of calling various doctors, making sure they all saw Kevin’s latest MRI and asking questions. Kevin’s neuro oncologist at Stanford decided to order another course of the original one-dose chemotherapy drug he got in January, before radiation therapy had started. Kevin responded pretty well to that drug the first time around, so we’re hoping it’ll have a similar positive effect this time.

The neuro oncologist also agreed that Kevin could try a more aggressive chemotherapy drug (that Kevin would take on a more regular basis, separate from the one-dose drug he’s getting). The drug he’s been on for the last few weeks was a pretty standard form of chemotherapy, but not one of the more aggressive types, because the doctors were worried about Kevin’s platelet levels. However, his platelets are now almost up to normal levels, so it might be beneficial to try a stronger chemotherapy drug to match the aggressiveness of the tumor.

For the moment, Kevin is still at the main hospital in Santa Cruz. Some therapists helped Kevin get up into a large reclining wheelchair-type contraption so he could sit up and see the view out another window. His appetite is slowly returning, and he hasn’t had any more seizure-esque episodes (knock on wood).

You all are doing an amazing job of holding Kevin in your thoughts and prayers. Please keep up the amazing, incredibly supportive work.

Still Unsure

Kevin has remained relatively stable over the weekend. His symptoms have gotten worse since a week ago, but they have remained about the same since Friday. There haven’t been any more seizure-type episodes, but his speech, swallowing, chewing and eyesight is much more affected than a week ago. We’re still not 100% sure what is going on (nor will we ever be), but the general consensus seems to be that the tumor has grown within the last month. If the problem was just additional swelling, the increased dosage of steroids would have caused a significant improvement over the weekend. We won’t know what the next possible steps are until we talk to more neuro oncologists, but that will happen this week.

Everyone is pretty upset about this setback, but we’re moving forward and trying to see what we can do next. Thank you to everyone for your support, thoughts and prayers.

Seizure

At the beginning of his physical therapy session today, Kevin had a small seizure. A CT scan and an MRI showed that the tumor may have grown, or the swelling has drastically increased. Furthermore, it’s further up on his brain stem than it was before. Kevin has been moved out of the skilled nursing facility and into the main hospital, and his steroid dosage has once again been increased to reduce the swelling. He will go to an appointment on Monday with his neuro oncologist at Stanford, and we don’t know much more than that. Of course, I will post more information as soon as we know more.

Please keep Kevin in your thoughts and prayers this weekend. He really needs all the love and hope you can send him.

Happy Birthday Kathlin and Carolyn!

This weekend is both Kathlin’s and Mom’s birthdays, with the added bonus of Mother’s Day thrown in the mix. Kathlin’s parents have flown out to spend some time with Kathlin, Kevin, Mom and Dad, so we hope Santa Cruz and its weather will be on its best behavior for our VIP visitors.

Kathlin continues to be an amazing individual: strong, patient and willing to learn. To say that she’s been a huge help is a wimpy understatement, but I can’t even begin to explain all that she’s done for Kevin and us. Her love and support is an incredible inspiration. She can understand almost everything Kevin says, even if it’s something completely out of the blue and poorly enunciated. She can suggest that Kevin do something and he’ll often comply (or after some arguing, they’ll reach an agreement), which is no easy feat with Kevin’s stubborn personality. She’s just as stubborn as Kevin, which we're finding is a helpful trait when involved with Kevin's fight against cancer. Furthermore, she’s an optimist. Our family is not very optimistic by nature, and she’s been a positive light that reminds us to hold out hope, even in the darkest moments. We can’t thank you enough, Kathlin, for all that you’ve done. Happy Birthday!!!! You deserve an amazing day for superwoman dedication and hard work.

In honor of her birthday and Mother’s Day, I’d also like to write some words of thanks to Mom for all that she’s done. When we were living over the hill close to Stanford and Santa Clara, Mom was the one organizing the living situations and food (thank you again to everyone who has shared with us your wonderful dishes—your food has kept us going!). Essentially, she made sure the rest of us stayed alive, nourished and healthy. Mom and Dad continue to contribute emotional support, planning, brainstorming and problem solving every day. They have stood up for Kevin’s strength and abilities countless times, and this has allowed Kevin to have a chance to fight. Mom—Happy Birthday and Mother’s Day!! You’ve been a wonderful Mom for Kevin and I our whole lives, and you continue to live up to that every day, no matter what new unwelcome surprises jump out at you.

Kevin has remained in the skilled nursing facility at Santa Cruz for this week. The head doctor decided that Kevin could benefit from one more week there while his energy level is continuing to recover. Next week, he may move to the acute rehab side of the facility, where he’ll get a few more hours per day of therapy. Kevin is working hard in the couple hours of therapy he does receive now; with a lot of assistance and support from therapists, he’s been practicing standing, kneeling and taking very small steps. He’s also making a strong effort to sit up for several hours in the chair each day.

Thank you to everyone who’s continuing to keep up with Kevin’s progress! He still has a long road ahead of him, but that road will be much easier with support from friends and family. Happy birthday to Kathlin and Mom, and happy Mother’s Day to all the Moms out there!

Five Weeks Later, Five Weeks Stronger

This weekend, I was finally able to visit Kevin, Kathlin, Mom and Dad in Santa Cruz. Mom greeted me at the airport with a button that says “CANCER SUCKS.” This button has become a regular accessory to my parents’ wardrobe, and I couldn’t agree more with its message.

Since I hadn’t seen Kevin for five weeks, I noticed a few major improvements that had occurred within that time frame. First of all, Kevin is re-integrated back into his environment. When I went back to school at the end of March, Kevin was not acutely aware of everything going on around him. Also, his attention span was pretty short; for example, he couldn’t watch the TV for an extended period of time. However, this weekend, Kevin was listening to every noise in his room, watching Food Network at every possible moment and starting conversations about the food or the hosts. All of these things showed me that Kevin is plugged back into his surroundings. He’s much more aware, his attention span has lengthened considerably and he’s noticing aspects of his surroundings and initiating conversation about them. He and I watched an hour-long snowboarding video, and he talked about skiing and snowboarding throughout the entire thing! His enunciation is not perfect, but he’s not letting that stop him from talking up a storm. He’s laughing much more, cracking a few jokes and smiling. I take this all to mean that emotionally and physically, Kevin is feeling much better.

Secondly, Kevin’s strength and movement looks much improved. He had this weekend off from therapy, so he rested a lot in bed. I only watched a few minutes of his physical therapy session today, but I was very proud of how well he was doing. His energy level is still pretty low because of his low potassium levels, but when he is able to exert some energy, I noticed that he’s much improved. His left side is still very affected and doesn’t move much, but I can now tell that the rest of the muscles in his body are trying to move that left side.

Kevin has been complaining about some of the wheelchairs being uncomfortable, so a therapist found the most comfy-looking wheelchair she could find, which happened to be motorized. On Sunday, Kevin practiced driving the wheelchair around the parking lot. He’s not a perfect driver—even he admitted, “I really shouldn’t be driving.” His double vision makes it hard for him to see where he’s going. Furthermore, the movement in his right hand is still not perfect, so the controls are a bit too sensitive for his abilities at this point. But he had a lot of fun zig-zagging around the parking lot!

Aunt Robin and Uncle Craig’s Brain Tumor walk on Saturday was a wonderful success! The weather was beautiful, and they said the event was filled with amazing amounts of positive energy, emotions and support. Thank you so much to them for walking and to everyone who donated to the National Brain Tumor Society!

I flew back to San Diego with more energy to take—and return—the punches life throws at us. As I watched the California coastline slide beneath me, I thought about how far Kevin has come since his ICU stay in February. Back then, doctors were writing Kevin off, but he’s still here, eating, talking and starting to stand with assistance. I’ve returned to San Diego with a “CANCER SUCKS” button pinned to my backpack and renewed hope that Kevin can beat off Bob and Steve.