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!