Week 1.5 at Valley

Santa Clara Valley is doing its job and tiring Kevin out! He has been working extremely hard, and he’s been rewarded with chocolate puddings and lollipops. However, even these rewards are tough work; when you think about it, Dum Dums are good exercise for your tongue, mouth and swallowing coordination.

Kevin’s attention span has also lengthened considerably. This weekend, he was able to start and finish two movies: Super Troopers and Snatch. Kevin practiced speaking by explaining Snatch to Kathlin, who hadn’t seen the movie enough times to get past Brad Pitt’s speech and understand what’s really going on. Today, Kevin felt up to watching about half of a Colbert Report. He’s no longer afraid to laugh!

Kevin has some great goals driving him forward. Besides wanting to eat again, he also desperately wants to get back into a normal wheelchair. For the last several weeks, he has been in special wheelchairs that have high backs, head support, recliners and other fancy gizmos that are supposed to help. In reality, these additions make Kevin more uncomfortable. Kevin has needed these chairs because his neck muscles were so weak that he couldn’t support the weight of his head. However, he has been working very hard on sitting up straight and holding his head up by himself. He’d also like to be able to propel himself, and he can’t easily do that in the wheelchair he has now. We hope the therapists will allow him to move to a regular wheelchair sometime soon so he can be more comfortable and work towards gaining more independence by wheeling himself around.

I often slip into trying to make the situation sound better than it really is, so this time I’m forcing myself to include the negative bits of news we’ve recently received. Kevin has been started on some antibiotics for a possible urinary tract infection. This has been a repeating issue in the past few months, and we’d just like it to get under control and go away (such an easy thing to say, such a difficult thing to do).

Also, today Kevin started fearing that he was weaning off his steroids too quickly. He has been on steroids to reduce the swelling around his tumors. Any extra swelling in his brain stem hits new nerves and wreaks havoc on his motor skills, so the steroids have been trying to keep swelling to a minimum. This evening, Kevin had a hard time swallowing and felt that his coordination was off, so he was afraid that the swelling was increasing. We alerted the doctor to this, and she is keeping a close eye on Kevin’s symptoms. Kevin has gone through two other unsuccessful attempts at weaning off steroids over the past six months. Each time he reached a low dose, the swelling increased and disaster struck, so he is justifiably gun shy about actually getting off the steroids. He definitely wants to be rid of them because they really mess with his mood, but he doesn’t want yet another setback.

*Disclaimer*
This is my first long-distance post from San Diego. I am no longer a direct eyewitness of Kevin’s journey. I have returned to UCSD for spring quarter, but I will be making frequent trips north to see Kevin, Kathlin and my parents. I will check in with them each day to hear updates and stories, and I will continue to relay the news to you all via the blog. Thank you for keeping up with Kevin’s progress!

Pep Talk

Two days ago, Kevin was exhausted for the entire day because he got off to a tiring start. First thing in the morning, he had to do the procedure that tested the mechanisms of his swallowing. He sat up in a wheelchair for about an hour and a half, which really tired him out. For the remainder of the day, Kevin didn’t have much energy, so he couldn’t participate much during therapy sessions.

Kevin’s attending physician spoke with the therapists about that day, and they had reported on his low energy and little participation. True, there was a good reason for Kevin’s exhaustion, but it provided a good teaching moment. Armed with the therapists’ reports, the doctor gave Kevin a threatening, but helpful, pep talk yesterday morning. Kevin’s doctor told him that if he’s not able to participate, there’s no point in him being here. Also, if he stops progressing, the doctors and therapists will decide that he has reached his potential for improvement, and they’ll send him home.

This talk succeeded in getting Kevin’s attention and motivating him. He knows that if he works for it, he will be able to improve great amounts. He wants to prove that he hasn’t plateaued in recovering his abilities. His long-term goals are to be able to walk unassisted and to be as independent as possible. Kevin believes he can eventually accomplish these goals, but he needs to make the therapists believe in him as well.

Yesterday, all his therapists were blown away by what he could do. He worked extremely hard in physical and occupational therapy, and he was able to eat most of a Wendy’s Frosty during speech therapy. He tapped into a deep source of energy to prove that he is willing to do the work it takes to be here. Plus, Kevin's stubbornness comes in handy; he won't let anyone tell him what he is or is not capable of! Kevin showed he has the strength and motivation to work towards goals he sets for himself, and every day more people believe in his potential.

Old Self

Kevin is behaving more like his normal self every day. His movements are less exaggerated and more controlled. Something as simple as nodding or shaking his head now looks natural, whereas it used to be obvious how much effort this action took. Every once in a while, a nonchalant “yeah” will pop out of Kevin’s mouth and sound completely like his normal, healthy, relaxed voice.

Also returning is Kevin’s desire to do things that he enjoys, and this is making him feel more like himself. Over the past few days, he has been watching episodes of Top Gear, a British TV show about cars that is actually extremely funny, even for people not all that enthralled with cars. Kevin has not wanted to watch good comedies for the past few months because if he laughs too hard, he often coughs. This is why he says Stephen Colbert is “too funny;” Kevin almost immediately starts laughing himself into a coughing fit. However, he might almost be ready for the Colbert Report again, because he laughed a fair amount at Top Gear and didn’t have any coughing problems!

Kevin’s favorite therapy is speech. Why? That’s when he gets to eat. It’s therefore not surprising that he’s progressing the most quickly with speech therapy. He wants to eat so badly that he’s working very hard to improve as fast as he can. Yesterday, he got a few bites of yogurt, mashed potatoes, applesauce AND chocolate pudding! He is doing a test today to make sure that all of his swallowing mechanisms are working properly. If all looks good, he will be able to eat more often, and he’ll move faster towards trying a larger variety of food. Until he gains enough strength and endurance to eat three meals a day, Kevin will continue to receive tube feeds through his “peg” to ensure that he gets plenty of calories and nutrition.

Thank you again to everyone for your wonderful food, wine, juice, pet sitting, housing, cards, quilts, hats, audiobooks, music, hugs, prayers and good wishes that you're sending Kevin and the family. You’ve been providing amazing amounts of sustenance, entertainment, hope and support for us. We certainly could not have managed this without you.

A Taste of Chocolate

Since the blood clot incident, Kevin has had several positive experiences at Santa Clara. He is starting to do things on his own, such as call the nurses himself and tell them what he needs. Up until this point, we would try to figure out what was wrong, call the nurse and explain the problem. For Kevin to do this himself is one important way for him to regain independence.

Kevin is also growing more comfortable with using his voice, now that he has the trache out. Last night, Kathlin put on some music, and Kevin started singing along to the Red Hot Chili Peppers. Back when Kevin was first diagnosed with cancer, he didn’t want to hear any music he’s familiar with because it brought back too many memories and made him depressed. Now, his mental state has improved to the point that he doesn’t just want to listen to the music he knows and likes, he also wants to sing along!

This shifting attitude—of no longer being afraid of things that might bring back good memories—is also playing out in the items that Kevin wants to decorate his room. We’ve had the “WE MISS YOU KEVIN” poster from the Colgate Geology department on his wall for a couple weeks now, and the other day, he asked us to re-read out loud all the things people had written. He even started reading one message himself, so his eyesight is dramatically improving along with his attitude.

Kevin received a new treat today from the speech therapist. Kevin tried to swallow applesauce a few days ago, and today he got to try swallowing chocolate pudding. It must feel wonderful to taste chocolate after tasting nothing for weeks!

We truly appreciate everyone sending your love and support to Kevin. Please keep posting your wonderful, inspiring messages to him; he might soon be up for reading them himself!

Another Bump

On Kevin’s first morning at Santa Clara Valley, he received routine ultrasounds on his legs to check for blood clots. This is a procedure they do to every incoming patient—and for good reason. They found a partial clot in each of Kevin’s legs. These clots were caused by Kevin’s immobility over the past several weeks. Partial clots are nearly impossible to know about without an ultrasound because they produce no outward signs on the skin. Partial clots can also move to different parts of the body like the lungs or heart. The standard procedure for this problem is an interventional radiology procedure that places temporary filters in Kevin’s veins to prevent the clots from moving anywhere more dangerous.

A small piece of family history: Dad spent a few years at Santa Clara Valley during his radiology training in the early 1980s. One of the interventional radiologists that Dad trained under is still here. As soon as Dad found out the results of the ultrasound, he went down to the radiology department, talked with this doctor and made sure Kevin would get the procedure done that afternoon. Plus, it was wonderful to have a doctor do this who Dad trusts. The procedure went well, and Kevin spent the afternoon and evening sleeping it off. He will start therapy on Saturday.

To cast this in the most positive light, the move down to Santa Clara might have saved Kevin’s life. If Kevin had stayed at Stanford, we might not have noticed the clots, because they don’t do routine ultrasounds of patients’ legs. With Kevin’s increasing movement in the physical therapy sessions at Stanford, the clots might have moved to his lungs, heart or brain, which would have caused major problems. So it’s wonderful that they found the clots and took care of them. Still, we’re extremely frustrated that—again—Kevin had to go through yet one more medical problem as soon as he progressed a tiny bit.

Santa Clara

A very quick update: Kevin moved to Santa Clara Valley’s rehab unit this afternoon. We said our goodbyes to the Stanford nurses, doctors and therapists, though we will see the neuro oncology team in a couple weeks to take another MRI and discuss chemotherapy options. The stress of moving hospitals and riding in the ambulance has worn Kevin out for the day. We hope this means he’ll sleep well tonight! Starting tomorrow, the rehabilitation team will work with Kevin and compile goals and a game plan. The Valley staff is happy to have him back and excited to get to work with him!

Trache Be Gone and Moving On!

Kevin slept one more night with his tracheostomy plugged, and he passed with flying colors. This morning, someone finally made a decision, and they removed his tracheostomy! He has been doing extremely well since the minute they took the trache out. He’s been coughing much less while still getting plenty of oxygen.

Kevin’s speech is also greatly improved without the trache; if he says something out of the blue, we’re able to understand him. Before, in order to understand him, we often needed to know the topic he was talking about. Also, Kevin swallowed a tiny bit of applesauce yesterday. His swallowing isn’t perfect yet, but after more improvement, milkshakes might be on the menu again!

Yesterday, one of our favorite nurses brought Kevin a March Madness bracket to fill out. The nurse figured that Kevin is missing out on a lot right now, but he shouldn’t have to miss this year’s tournament. Kathlin and Kevin filled out the bracket this morning. Much to Kathlin’s dismay, Kevin insisted that Syracuse won't make the championship game (additional apologies to the New York crowd).

We even have more good news—it looks like Kevin will be moving to Santa Clara Valley’s rehab unit sometime in the next few days. His strength and endurance are quickly returning, and the therapists and doctors agree that he’s ready for therapy. We’re also on board with this plan. Even with very intense and exhausting therapy sessions, Kevin has been antsy for at least the past week. He’s looking forward to going back to Santa Clara. Kevin really enjoys working towards set goals: being independent again, having Kathlin be his girlfriend and no longer his caregiver, going on a date with Kathlin… along with goals like being able to stand and walk.

Thank you to everyone for sending Kevin your best wishes and prayers. He’s making impressive improvements every day, and it looks like that won’t stop any time soon.

Plugged

We are always surprised at the procession of events in the hospital. For the first half of Monday, Kevin had a tough time breathing in enough oxygen. The lack of oxygen makes him very tired and unresponsive. We were really worried about this, and we were constantly coaching him to clear his throat, swallow and breathe deeply. He was really irritated with us by the time he started regularly getting enough oxygen!

More than anything else, physical therapy helped his oxygen intake on Monday. While giving the exercises 110%, Kevin started breathing much harder. Plus, moving around helped stimulate his cough. He was breathing so well after physical therapy that they decided to do a trial plugging of his tracheostomy. This tests if Kevin can breathe and protect his airway well enough on his own, without his trache.

As of right now, Kevin’s trache is still plugged. It’s been more than 24 hours! That’s a major achievement, especially after Monday morning, which was really rough in terms of his breathing. When we started asking about the plugging process several days ago, they said Kevin needed to be plugged for a 24-hour trial. After that, it would be okay to take the trache out.

But… (there’s always a but) now, the trial period has been extended from 24 to “?” hours. Each doctor or respiratory therapist is pointing fingers at each other, saying that the other person is the one to decide if Kevin is ready to get his trache out. So, while this will be a frustrating process since no one wants to step up to bat and make a decision, we’re happy that Kevin has done amazingly well with the trial so far.

For the second day in a row, Kevin worked extremely hard in physical therapy. He reached an important milestone: Kevin stood up for the first time in almost six weeks! The physical therapist and aides were giving Kevin a lot of support, but we’re thrilled he’s starting to regain some strength. Kevin also sat up in a wheelchair for three hours. He’s exhausted after such a big day—speech, occupational and physical therapy, sitting in a chair and breathing around a plugged trache is a lot of work! We’re extremely proud that he’s exerting so much effort to get a little better every day.

Up and Down

Kevin had a weekend full of slow and steady progress, even despite a bump in the road Sunday morning. On Saturday, his speaking improved significantly. We understand him much better, which is a big relief for both Kevin and us. He had a long session with a wonderful speech therapist who was happy with his improvement. We were starting to wonder when his trache could come out, so she explained the process of removing tracheostomies. Kevin now meets most the criteria for taking out the trache; the only thing he’s a bit weak on is initiating his own cough. One tumor is in an area that especially affects his control of his swallowing, vocal chords, mouth and tongue. Kevin has a wonderfully strong cough that rattles the walls, but it’s reflexive—he can’t cough on command. He also has a hard time purposefully clearing his throat, though that is getting better. Willful coughing and throat-clearing are two important things for protecting his airway and preventing him from aspirating, so the tracheostomy is wonderful help while he can’t do those things. However, it looks like they may plug his trache soon, which would test if he could protect his airway well enough without the trache.

Kevin got a bad headache Saturday night and was not able to sleep much. His headaches scare the hell out of us, to say the least. However, when we arrived Sunday morning, we deduced that he probably had a sinus headache, maybe caused by allergies. He was outside for a while yesterday, and it was very windy. All of our allergies are going nuts, so we wouldn’t be surprised if his allergies were active also! Once we explained to Kevin that it was probably a sinus headache and he shouldn’t worry too much, he calmed down and had a decent day, although he was extremely sleepy. He still managed to sit up in a chair for a couple hours and do some exercises with us. He also wore the speaking valve on his trache for a record amount of time. We hope Kevin sleeps better tonight and gathers some more energy to put into Monday’s physical, occupational and speech therapy.

High Spirits

I may sound like a broken record, but we are thrilled with Kevin’s positive attitude this week. Many people have told us that when it comes to beating cancer, the patient’s attitude is one of the most important things. Of course, the patient needs a good medical treatment—radiation, chemo, etc. After that, we’ve been told over and over that three things are essential for a patient’s recovery. It helps if the patient was strong and healthy before the cancer, if they have a strong support network and if they have a positive and optimistic attitude.

Kevin has the first two requirements covered. He was playing water polo at Colgate up until his first hospitalization. Also, you all are an amazing support network, and you'll have an even stronger effect as Kevin gets better and feels up to seeing more people. Previously, his attitude has been the weakest of those three requirements; he is normally a pessimistic person. However, his spirits have been very high lately. He knows he’s getting better, he knows he has to work to improve even more and he actually wants to do exercises to ensure his progress. In fact, he wants to do exercises almost every waking moment! One of his favorites is grabbing a foam pool noodle and whacking everyone within reach. We'll endure the poundings if it helps his coordination and strength! We’re ecstatic that Kevin’s attitude is so good, because he'll need it to make it through months of physical, occupational and speech therapy to work towards recovery.

Kiss the Lucky Egg!

Kevin has been doing well the past couple days. His spirits have been amazingly high; he is usually up for trying a new exercise or repeating some familiar ones. His strength and movement is returning one tiny bit at a time. He wore the speaking valve yesterday for about an hour total, and he's wearing it much longer today. His enunciation is nowhere near perfect, but he is getting better at making strong sounds, which is an important step. He sat up in a large wheelchair today for about an hour and a half. We took him on a little tour around his wing. We showed him the view out other windows and the little kitchen where Mom heats up our lunches and dinners.

One theme over the last couple days is that various doctors, nurses and therapists have mentioned that they truly understand Kevin is completely there mentally, but he looks pretty bored and should laugh more often. We completely agree; laughter is terrific medicine and exercise. At the moment, Kevin, Kathlin and I are watching Cool Runnings. Kevin’s double vision makes it difficult for him to focus on the screen, but we’re trying an eye patch on one eye to see if that helps. He likes at least listening to the movie. Kathlin and I certainly enjoy the change of pace in his hospital room! Maybe Kevin can adopt the chant Yule Brenner teaches Junior (please excuse the language, courtesy of Disney):

“I see pride,
I see power,
I see a bad-ass mother
Who don’t take no crap off nobody!”

Fresh Air

This weekend, Kevin was able to sit up and be wheeled outside in a special “cardiac chair,” one step between a bed and a wheelchair. He was able to go to a garden just outside the hospital both Saturday and Sunday. He got to wear his sunglasses and feel the sun for the first time in weeks. On Sunday, the timing worked out so that Kevin got to see our golden retriever, Chammy, when our friend Michele brought her for a visit. Despite living apart from us for four months, Chammy is still thrilled to see her family, and is more than happy to give Kevin extra attention. Due to rain showers today, Kevin wasn’t able to go outside, but he sat in the cardiac chair and faced out his window for a change of scenery. The courtyard outside his window is actually very pretty this time of year; the trees are bursting with blooms and very colorful flowers coat the ground.

We are still happy with the nursing care and communication on this floor. The employees are extremely compassionate and understanding, and they will actually take action if we have a question or if something is wrong. We also have received a lot of help from a nurse who’s a friend of a close family friend—without her, Kevin wouldn’t have gotten outside this weekend.

We want to reiterate our thanks to everyone for food, housing, prayers, thoughts, dedicating waves and ski runs to Kevin and everything else you’re doing with Kevin in mind. We absolutely could not do this without you all. Thank you, thank you, thank you!

Certificate of Completion!

Today was Kevin’s last day of radiation therapy! When we first discussed radiation around New Year's, we had no idea how tough it would be to complete. It’s a huge achievement for Kevin to finish this treatment. All things considered, he managed to get through it relatively well. He only took five days off from radiation after he had his major complication four weeks ago. Now, here he is, improving (once again) and finally done with radiation!

Most likely, Kevin will stay at Stanford for another several days so the doctors and nurses can monitor him to make sure he’s continuing to improve. At some point down the line, he will go to a rehab facility to work on his motor skills. Kevin needs rehab to essentially reconnect his brain to the rest of his body. His brain is still as sharp and smart as it has always been. However, since the tumor is in his brain stem, his brain can’t get signals through his brain stem and to his body. It will take a long time to re-forge these connections. In four to six weeks, they will take a MRI to decide what his chemotherapy course will be.

Kevin spoke much louder with the speaking valve today. It was amazing to hear him greet us as we walked into his room. With more practice, he’ll be able to use that valve regularly. It’ll be wonderful when he can communicate well with us again!

Please think of Kevin again tomorrow, Saturday, at noon Pacific! Thank you to everyone for your amazing love and support.

Progress Report

First of all, I’d like to welcome hundreds of new visitors to the blog. Since Romain started the Facebook group, the daily hits for the blog have tripled. People in 29 countries have visited the blog! When I told Kevin these facts today, his eyebrows raised in an expression of surprise that we haven’t seen on his face in four weeks. We’re thrilled the news is spreading to all the people out there who care for and are concerned about Kevin. Thank you for the amazing amount of love, support, prayers and positive thoughts you’re sending Kevin’s way!

Kevin is continuing to slowly improve. He is still rather drowsy at times, which is a combination of his countless medications, not being fed much over the past four weeks and not getting a solid night’s sleep during that time. When he’s perky, however, he’s nodding or shaking his head vigorously in response to questions, can move his left side and has even sat up in a special chair (with a lot of help from physical therapists). Today, a speech therapist tried out a valve on Kevin’s tracheostomy tube that would allow him to talk. Kevin managed to say a couple things very softly. He will do several more trials over the next few days, so he might be able to speak to us on a regular basis sometime soon.

For an unknown reason, the transfer out of the ICU caused the orders for Kevin’s medications to vanish, so he went way too long on Tuesday without receiving some of his meds. However, with Dad’s help and incredible patience, that was smoothed over within the first day on the new floor. Besides that large snafu, we’ve been very happy with the nursing care and communication on this floor.

The floor Kevin is on now does not go by the ICU’s strict visiting hours, so we can have at least one person keeping him company at all times. This has eliminated a lot of stress, especially on Kathlin’s part, of sitting in the waiting room and not knowing how Kevin’s doing or what the doctors and nurses are doing to him.

Kevin’s spirits have also been remarkably high, considering the circumstances. After yesterday’s radiation treatment, Kevin gave a thumbs-up to the head radiation oncologist. He knows he’s getting better, and the doctors all agree with him now!

Out of the ICU

A brief update: Kevin was moved out of the ICU last night. The doctors and nurses realized that Kevin was improving enough to no longer need intensive care, so he went to a floor at Stanford where the nursing level is one step down from intensive. We are still smoothing out a lot of kinks from the transition, but overall, Kevin managed the move quite well.

Also, if you have a Facebook account, feel free to join Romain’s Facebook group, Kicking Kevin’s Tumor (see Romain’s comment on the “BIG Steps!” post below). It’s great to spread the word in several different ways—the more people we have thinking about Kevin, the better!

BIG Steps!

This journey still catches us off guard with horrible plummets. Then, the next thing we know, we’re happily floored as Kevin reaches for new heights.

On Saturday night, we came in for visiting hours to see several things wrong with Kevin and no nurse in sight. To keep a very long and infuriating story short, we explained to the night nurses how to care for Kevin, but later that night they overreacted to some of his symptoms. They ended up putting another tube in him and took a CT scan to figure out what was wrong.

The CT shows that nothing new is wrong—in fact, it shows that the tumor is smaller and most of the bleeding has been absorbed! Thankfully, Kevin had a wonderful, smart and understanding nurse the next day. This nurse managed to get Kevin back to where he had been the day before. Kevin then surprised us all by greatly surpassing where he’d been the day before, despite having a hellacious night!

He now nods or shakes his head almost immediately after being asked a question, he moves around in his bed much more, can move his eyes more, and, the best improvement (drum roll please)… he can move his left side on command! Yesterday he even wanted a pen and paper, and he managed to write a few things down to communicate what he wanted. We are thrilled with these major steps forward. Even Kevin can tell he’s getting better!

Kevin received his last day of cranial-spinal radiation today, and he gets focused radiation through Friday. The doctors are finally recognizing his improvement and are starting to mobilize to get him out of the ICU.

The Friday meeting with the doctors was tense at times, but overall it went well. We are now all on the same page that Kevin is communicating with us, we think he’s improving and we all want to keep fighting. We learned that they will take a follow-up MRI several weeks after radiation ends, and then they will decide what the next course of action will be in terms of possible chemotherapy. That seems like a long ways off, so in the meantime, Kevin needs to gather all the strength he can muster to recover and do rehab.