Many, many thanks to everyone who thought of Kevin today. At noon, we went into Kevin’s room and reminded him of how much love he has coming from all of you. Mom had compiled a list of everyone who has been in contact with us and on the blog, sending Kevin prayers and well wishes. Through some tears and choking up, Mom read all of your names to him—it took a long time to get through you all! As I pictured each smiling face that she named, I couldn’t believe how much support Kevin has out there. I hope Kevin was also putting together in his mind a huge crowd of friendly faces cheering him on. We told him that there are people in 17 countries who are checking the blog—that’s really impressive!
Kevin had a very restful day today. His distress from a few days ago has evaporated for the moment (knock on wood). He didn’t seem in pain today; in fact, today was the first day in more than a week that he didn’t need any heavy-duty pain meds. He’s getting nutrition almost constantly, and he’s catching up on some much-needed sleep.
Again, thank you to all of you for sending Kevin so much love and support. For those of you who would like to make the “simultaneous Saturday” a weekly thing, please feel free to join in to create a group of hundreds, maybe thousands of people thinking about Kevin every Saturday at noon Pacific.
Saturday, February 27, 2010
Friday, February 26, 2010
Please Think of Kevin Tomorrow, Saturday, 12 Noon Pacific!
Kevin is continuing to slowly improve. We especially notice this when he’s not extremely sedated from medications. But as we’ve discovered over the last few months, good things are always accompanied by new challenges.
Within the last few days, there have been some frustrating miscommunications. Some doctors were planning for today being Kevin’s last day of radiation, but he actually has radiation therapy all next week as well. Furthermore, some doctors have started to show us less hope because they haven’t seen Kevin improve. This group of doctors assesses him right after he receives his medications, so he is very sedated whenever they walk in. They never see Kevin when he’s much more perky and aware. This is frustrating because these doctors feel that Kevin is not getting any better. However, other doctors see progress, and we see small improvements every day.
We have a meeting scheduled for this evening with a few key doctors. We hope that we’ll be able to smooth out some of these misunderstandings. We will make absolutely clear that Kevin is slowly improving, we’re not giving up on Kevin and we want to give Kevin every possible chance to beat this. To any doctor who tries to convince us otherwise, we’ll say, “wouldn’t you have liked to have been given a chance when you were 21?”
Thank you to everyone for planning to take a few minutes out of your day tomorrow to simultaneously send Kevin some positive energy! We are immensely grateful for every prayer or good thought you send his way.
Within the last few days, there have been some frustrating miscommunications. Some doctors were planning for today being Kevin’s last day of radiation, but he actually has radiation therapy all next week as well. Furthermore, some doctors have started to show us less hope because they haven’t seen Kevin improve. This group of doctors assesses him right after he receives his medications, so he is very sedated whenever they walk in. They never see Kevin when he’s much more perky and aware. This is frustrating because these doctors feel that Kevin is not getting any better. However, other doctors see progress, and we see small improvements every day.
We have a meeting scheduled for this evening with a few key doctors. We hope that we’ll be able to smooth out some of these misunderstandings. We will make absolutely clear that Kevin is slowly improving, we’re not giving up on Kevin and we want to give Kevin every possible chance to beat this. To any doctor who tries to convince us otherwise, we’ll say, “wouldn’t you have liked to have been given a chance when you were 21?”
Thank you to everyone for planning to take a few minutes out of your day tomorrow to simultaneously send Kevin some positive energy! We are immensely grateful for every prayer or good thought you send his way.
Wednesday, February 24, 2010
Comfort Level
Kevin slept most of last night without being hooked up to the ventilator. We are very pleased that he seems to be doing well breathing on his own. His breathing has gotten much more regular and steady within the last week.
Kevin is still in a significant amount of pain. The good news is that he no longer complains solely about his headache. Instead, he has started complaining about pain in his left arm, where there is an arterial IV. While it may sound weird that we’re happy he’s complaining about this, it means that sensation in his left arm is returning, which is a good sign for recovery. The left side of his body is the side that has been the most affected, so it’s the side we’re most worried about for long-term prospects.
There’s even a second piece of good news related to Kevin’s pain. Contrary to the doctors’ previous thoughts (in the “Pain” post), they no longer think his headaches are caused by increased fluid pressure. They have decided that Kevin’s brain is draining fluid relatively well. Supposedly, they will remove the draining tube sometime soon. This will eliminate the risk of infection from that tube.
The negative issue today seems to be Kevin’s discomfort. He has periods when he tenses up while his heart rate and blood pressure soar. During some—but not all—of these episodes, he will nod when we ask him if he’s in pain. Therefore, we’re not exactly sure what is causing these uncomfortable periods. It’s very hard for us to see him when he’s that uncomfortable, for it brings up so many emotions and makes us realize the magnitude of pain and suffering he must be going through.
We really like Lynn’s idea (see her comment on the “Slow Progress” post below) of a planned time when all of Kevin’s friends, family and loved ones can simultaneously send Kevin positive thoughts. This coming Saturday, February 27, at 12 noon Pacific (you do the math for your own time zone), we would love you to think of Kevin, light a candle, ride a wave, say a prayer or whatever you’d like to do to send him positive healing vibes. Kevin might be turning around for the better, and he needs every bit of love and hope we all can send him.
Kevin is still in a significant amount of pain. The good news is that he no longer complains solely about his headache. Instead, he has started complaining about pain in his left arm, where there is an arterial IV. While it may sound weird that we’re happy he’s complaining about this, it means that sensation in his left arm is returning, which is a good sign for recovery. The left side of his body is the side that has been the most affected, so it’s the side we’re most worried about for long-term prospects.
There’s even a second piece of good news related to Kevin’s pain. Contrary to the doctors’ previous thoughts (in the “Pain” post), they no longer think his headaches are caused by increased fluid pressure. They have decided that Kevin’s brain is draining fluid relatively well. Supposedly, they will remove the draining tube sometime soon. This will eliminate the risk of infection from that tube.
The negative issue today seems to be Kevin’s discomfort. He has periods when he tenses up while his heart rate and blood pressure soar. During some—but not all—of these episodes, he will nod when we ask him if he’s in pain. Therefore, we’re not exactly sure what is causing these uncomfortable periods. It’s very hard for us to see him when he’s that uncomfortable, for it brings up so many emotions and makes us realize the magnitude of pain and suffering he must be going through.
We really like Lynn’s idea (see her comment on the “Slow Progress” post below) of a planned time when all of Kevin’s friends, family and loved ones can simultaneously send Kevin positive thoughts. This coming Saturday, February 27, at 12 noon Pacific (you do the math for your own time zone), we would love you to think of Kevin, light a candle, ride a wave, say a prayer or whatever you’d like to do to send him positive healing vibes. Kevin might be turning around for the better, and he needs every bit of love and hope we all can send him.
Monday, February 22, 2010
Slow Progress
Today, Kevin took a small but significant step. The ventilator went nearly two days without needing to give him breaths because he was breathing so well under his own power. Therefore, the doctors agreed that Kevin was ready to try breathing off the ventilator. He successfully breathed on his own for three hours today. We asked him if he was more comfortable when not connected to the ventilator, and he nodded. The nurses were very happy with his performance off the vent. They hooked him back up to the vent this afternoon in case he got tired, but based on how well he did during today's trial, he might be completely off the vent soon.
Kevin also appears more aware and alert today than he’s been since he went back into the ICU two weeks ago. He’s making more eye contact, reacting faster and moving more frequently. It would be wonderful if these slight improvements start snowballing!
Kevin also appears more aware and alert today than he’s been since he went back into the ICU two weeks ago. He’s making more eye contact, reacting faster and moving more frequently. It would be wonderful if these slight improvements start snowballing!
Sunday, February 21, 2010
Pain
Kevin had a rough day on Friday. Through this whole process, he thankfully hasn’t had too much pain. However, he started complaining of a headache a few days ago, and it was much worse Friday morning. He was very sedated from pain and anxiety medications and couldn’t communicate if he still had a headache, but his heart rate and blood pressure were sky high. This signaled to us that he was still in a lot of pain.
They took another CT scan to figure out if any new developments were causing his headache. The CT did not show any major new problems. However, it did show that the doctors can’t remove one tube as quickly as they would like. One tumor is nearly blocking off a ventricle in his brain that holds cerebrospinal fluid. A lot of fluid is trying to sneak through a very narrow opening, so the pressure can build up quickly. When Kevin went into the ICU again two weeks ago, they put a tube in his head to relieve this pressure by draining some cerebrospinal fluid. This past week, the doctors were gradually taking that tube out. However, the CT showed that the ventricles were enlarged, which means they needed more help draining fluid. This would have caused the headache. They put the tube all the way back in, and plan to keep it in at least until radiation is finished.
We obviously wish Kevin could drain fluid on his own, as the tube invites risk of infection. However, if this is what the circumstances call for, then we’re happy it was discovered before something worse happened. Plus, for the moment, the drain will eliminate Kevin’s splitting headaches.
This weekend, Kevin has been much more calm. He is exhausted and sleepy, but he has a more normal heart rate and blood pressure. He’s still hooked up to the ventilator, but he is breathing under his own power most of the time. We wish that the brain would reabsorb blood more quickly, but while we’re waiting for that to happen, we’re holding onto hope for a positive outcome.
They took another CT scan to figure out if any new developments were causing his headache. The CT did not show any major new problems. However, it did show that the doctors can’t remove one tube as quickly as they would like. One tumor is nearly blocking off a ventricle in his brain that holds cerebrospinal fluid. A lot of fluid is trying to sneak through a very narrow opening, so the pressure can build up quickly. When Kevin went into the ICU again two weeks ago, they put a tube in his head to relieve this pressure by draining some cerebrospinal fluid. This past week, the doctors were gradually taking that tube out. However, the CT showed that the ventricles were enlarged, which means they needed more help draining fluid. This would have caused the headache. They put the tube all the way back in, and plan to keep it in at least until radiation is finished.
We obviously wish Kevin could drain fluid on his own, as the tube invites risk of infection. However, if this is what the circumstances call for, then we’re happy it was discovered before something worse happened. Plus, for the moment, the drain will eliminate Kevin’s splitting headaches.
This weekend, Kevin has been much more calm. He is exhausted and sleepy, but he has a more normal heart rate and blood pressure. He’s still hooked up to the ventilator, but he is breathing under his own power most of the time. We wish that the brain would reabsorb blood more quickly, but while we’re waiting for that to happen, we’re holding onto hope for a positive outcome.
Thursday, February 18, 2010
Electricity
Yesterday turned out to be more eventful than expected. The power outage became a major problem at the hospital. At one point in time, all of Stanford Hospital’s backup power systems failed. The scene was pretty chaotic, with what seemed like hundreds of people running around the ICU and yelling at each other. Kevin’s wing of the hospital had very unreliable power, and because he is still on the ventilator, he needs reliable electricity. They moved him to another ICU in a different wing of the hospital, where they had more stable backup power. After the normal electricity came back on and stayed on, he was transferred to yet another ICU. The moves stressed Kevin out, but at least he didn’t have any major issues while the power was out.
Today, thankfully, the power is staying on. Kevin received radiation this afternoon, and he can resume watching the Olympics while he’s resting. The rest of us are in a holding pattern, providing love and support when we can go into his room and just making sure everything is at least stable, if not slowly improving.
Today, thankfully, the power is staying on. Kevin received radiation this afternoon, and he can resume watching the Olympics while he’s resting. The rest of us are in a holding pattern, providing love and support when we can go into his room and just making sure everything is at least stable, if not slowly improving.
Wednesday, February 17, 2010
Some Surprises
Yesterday, we were pleasantly surprised by the news that Kevin would restart radiation. It was a large ordeal to transport him to the radiation oncology department with an ICU nurse, a respiratory therapist, two transport men and the ventilator. The whole group got stuck in the elevator for a few tense moments yesterday, but after some tugging and rearranging, they spilled out of the elevator doors like clowns falling out of an overstuffed Volkswagen bug. The ICU nurse and respiratory therapist need to travel with Kevin to monitor him during radiation. During transport, the respiratory therapist squeezes a ball to give him a breath every few seconds. Despite all the commotion, Kevin did well during radiation. We are thrilled that radiation can continue while he is still on the ventilator.
We also learned yesterday that another unknown has been introduced into the equation. The MRI from a couple days ago shows that the bleeding is more extensive than everyone previously thought. That is why things are going so slowly and why things may continue to move at a snail’s pace. In order for the brain stem to function normally, the tumors and blood need to leave. The blood needs to be reabsorbed, which is a long and slow process in the brain. Some doctors say the radiation may help with the blood; others say absorption is the only thing that will help. Basically, the doctors reaffirmed that Kevin’s recovery will be slower than everyone originally thought, and no one knows what Kevin’s neurological function will be once everything is out of the brain stem. Please keep hoping and praying for a positive outcome!
Today’s surprise is that the hospital is running on backup emergency power. The Palo Alto / Menlo Park area has lost power because of a private plane crash in East Palo Alto. All of Kevin’s medical equipment is still working. The TV isn't operating, so we set him up with a Harry Potter audiobook instead. If the power is still out this afternoon, radiation will not happen today.
Thank you again to everyone for checking in from around the country and the world. We truly appreciate all the love and hope you are sending to Kevin and us.
We also learned yesterday that another unknown has been introduced into the equation. The MRI from a couple days ago shows that the bleeding is more extensive than everyone previously thought. That is why things are going so slowly and why things may continue to move at a snail’s pace. In order for the brain stem to function normally, the tumors and blood need to leave. The blood needs to be reabsorbed, which is a long and slow process in the brain. Some doctors say the radiation may help with the blood; others say absorption is the only thing that will help. Basically, the doctors reaffirmed that Kevin’s recovery will be slower than everyone originally thought, and no one knows what Kevin’s neurological function will be once everything is out of the brain stem. Please keep hoping and praying for a positive outcome!
Today’s surprise is that the hospital is running on backup emergency power. The Palo Alto / Menlo Park area has lost power because of a private plane crash in East Palo Alto. All of Kevin’s medical equipment is still working. The TV isn't operating, so we set him up with a Harry Potter audiobook instead. If the power is still out this afternoon, radiation will not happen today.
Thank you again to everyone for checking in from around the country and the world. We truly appreciate all the love and hope you are sending to Kevin and us.
Monday, February 15, 2010
A Snail's Pace
We thought things were moving slowly before, but compared to how things are proceeding during this ICU stay, everything before this was moving at the speed of light. Therefore, I don’t have any big updates to announce. The doctors and nurses are weaning Kevin off the ventilator, but that is a much slower process than any of us expected. They still put him on the vent to give him breaths whenever he gets tired. They are also very concerned about Kevin’s cough; he tends to have coughing fits whenever he is moved. Kevin takes after Mom and has always had an extremely strong cough that has scared the heck out of Dad and I, and now it’s scaring the nurses and doctors.
Kevin is also still extremely sedated, though last night he was awake enough to want to watch the Olympics. Kevin watched Alexandre Bilodeau bounce down the mogul field to win Canada’s first gold on home soil. When Kevin is out of the ICU and is no longer prone to coughing if he chuckles or is surprised, we’ll have to show him the men’s 1500 meter short-track speedskating final. He’ll get a kick out of the finish.
We hope things will start moving a bit more quickly so Kevin can get out of the ICU and be well enough to start radiation again. The radiation is the treatment that will help evict Steve and Bob, so we want that to continue as soon as possible.
Kevin is also still extremely sedated, though last night he was awake enough to want to watch the Olympics. Kevin watched Alexandre Bilodeau bounce down the mogul field to win Canada’s first gold on home soil. When Kevin is out of the ICU and is no longer prone to coughing if he chuckles or is surprised, we’ll have to show him the men’s 1500 meter short-track speedskating final. He’ll get a kick out of the finish.
We hope things will start moving a bit more quickly so Kevin can get out of the ICU and be well enough to start radiation again. The radiation is the treatment that will help evict Steve and Bob, so we want that to continue as soon as possible.
Saturday, February 13, 2010
Trache and Peg
Thank you to everyone for your prayers and healing thoughts. Also, thank you to those local friends who are keeping us fed; you all are amazing cooks, and we gain physical and emotional strength from your meals.
Kevin received his trache yesterday afternoon. We are very grateful that it was done before the holiday weekend. He also received a “peg,” a feeding tube that will give him nourishment. He hadn’t had any nourishment since Sunday evening. We all know the healthy Kevin would have had a major fit if he hadn’t eaten for five days, so we’re happy he’s getting nourishment now. The surgery went well, and he looks much more comfortable now than he was with the ET tube.
Kevin is still very sedated and can only squeeze our hands once in a while, or he sometimes barely nods or shakes his head in response. He is this sedated so he can get used to the trache and let it heal. Today they will work on weaning him off the sedatives and ventilator. We don’t know what his abilities or functionality will be when he comes off the sedatives, but we hope he won’t be very far behind where he was a week and a half ago when he was transferred to Santa Clara.
Currently, the word is that Kevin does not actually have pneumonia—it was a false alarm. We hope that’s true, so that the complications are kept to a minimum!
This morning, Kevin’s nurse decided that Kevin was aware enough to enjoy listening to the radio. She scanned through the stations as Kevin shook his head until she found the classic rock station, which made Kevin nod. When I walked into his room, “Taking Care of Business” was playing as the nurse explained to us that Kevin’s bloodwork is stable and last night’s CT scan most likely shows no bad changes. The song seemed rather appropriate; everyone, including the rest of Kevin’s body, is working overtime to make him healthy again.
Kevin received his trache yesterday afternoon. We are very grateful that it was done before the holiday weekend. He also received a “peg,” a feeding tube that will give him nourishment. He hadn’t had any nourishment since Sunday evening. We all know the healthy Kevin would have had a major fit if he hadn’t eaten for five days, so we’re happy he’s getting nourishment now. The surgery went well, and he looks much more comfortable now than he was with the ET tube.
Kevin is still very sedated and can only squeeze our hands once in a while, or he sometimes barely nods or shakes his head in response. He is this sedated so he can get used to the trache and let it heal. Today they will work on weaning him off the sedatives and ventilator. We don’t know what his abilities or functionality will be when he comes off the sedatives, but we hope he won’t be very far behind where he was a week and a half ago when he was transferred to Santa Clara.
Currently, the word is that Kevin does not actually have pneumonia—it was a false alarm. We hope that’s true, so that the complications are kept to a minimum!
This morning, Kevin’s nurse decided that Kevin was aware enough to enjoy listening to the radio. She scanned through the stations as Kevin shook his head until she found the classic rock station, which made Kevin nod. When I walked into his room, “Taking Care of Business” was playing as the nurse explained to us that Kevin’s bloodwork is stable and last night’s CT scan most likely shows no bad changes. The song seemed rather appropriate; everyone, including the rest of Kevin’s body, is working overtime to make him healthy again.
Thursday, February 11, 2010
Small World, Big Day
Yesterday, we met Beth, the oncology resident now assigned to Kevin’s case. She walked into Kevin’s room and asked Kathlin, “so, did you go to Colgate too?” Beth is a Colgate alumna who graduated in 1998. We’ve gained one more member of the Colgate community who is pulling for Kevin’s success!
We were told yesterday that they would try to take the ET tube out early this morning, but when we arrived today, Kevin still had the tube in. The doctors and nurses continued to waver back and forth, unable to make a decision about taking out the tube or putting in a tracheostomy. Finally, around 4 p.m., they decided to give Kevin a trial extubation.
They took the tube out and let him breathe on his own, but we discovered that he has some upper respiratory problems. His breathing was extremely labored, and he probably would not have been able to keep it up for a long period of time. His lungs are strong (thank you water polo), but there are a number of factors that could be weakening his control of his vocal chords, swallowing, etc. His very labored breathing led them to sedate him and reinsert an ET tube, and they plan to put in a tracheostomy. We obviously were hoping that Kevin might be able to breathe and protect his airway on his own, but at least it doesn’t seem like there was any harm done while trying to extubate Kevin.
Kevin is first on the waiting list to receive a trache, so we desperately hope he’ll receive it tomorrow. We’ve been through several holidays since this all began, so we know that elective procedures simply don’t get done over three-day weekends. The trache will bypass Kevin’s upper respiratory issues and make his breathing easier. He will also be more comfortable with the trache than he is now with the ET tube down his throat.
I’m sorry to end on a negative note… but we also learned today that Kevin has developed a small pneumonia. He is on antibiotics to clear it up, so let’s hope the antibiotics do their work quickly and efficiently.
We were told yesterday that they would try to take the ET tube out early this morning, but when we arrived today, Kevin still had the tube in. The doctors and nurses continued to waver back and forth, unable to make a decision about taking out the tube or putting in a tracheostomy. Finally, around 4 p.m., they decided to give Kevin a trial extubation.
They took the tube out and let him breathe on his own, but we discovered that he has some upper respiratory problems. His breathing was extremely labored, and he probably would not have been able to keep it up for a long period of time. His lungs are strong (thank you water polo), but there are a number of factors that could be weakening his control of his vocal chords, swallowing, etc. His very labored breathing led them to sedate him and reinsert an ET tube, and they plan to put in a tracheostomy. We obviously were hoping that Kevin might be able to breathe and protect his airway on his own, but at least it doesn’t seem like there was any harm done while trying to extubate Kevin.
Kevin is first on the waiting list to receive a trache, so we desperately hope he’ll receive it tomorrow. We’ve been through several holidays since this all began, so we know that elective procedures simply don’t get done over three-day weekends. The trache will bypass Kevin’s upper respiratory issues and make his breathing easier. He will also be more comfortable with the trache than he is now with the ET tube down his throat.
I’m sorry to end on a negative note… but we also learned today that Kevin has developed a small pneumonia. He is on antibiotics to clear it up, so let’s hope the antibiotics do their work quickly and efficiently.
Wednesday, February 10, 2010
The Waiting Game
Kevin is still in the ICU at Stanford. Most of today has been spent waiting for things to happen, which, of course, haven’t happened yet. He still has the breathing tube in and is very sedated. The doctors have been talking for a couple days about getting him off the ventilator, but they have been hung up on deciding what to do next. They are debating between putting in a temporary tracheostomy or taking out the breathing tube to see how well he controls his airway. If they do the latter and he succeeds at protecting his airway, wonderful; however, if he is unable to swallow or prevent himself from aspirating, they will have to put the breathing tube back in and then insert a temporary tracheostomy. We are trying to be very patient with all of this, but it is still extremely frustrating to twiddle our thumbs while the doctors decide what is best, especially since Kevin doesn’t gain anything from waiting an extra day to get the breathing tube out.
The ICU’s visiting schedule at Stanford is also very draining. We are only allowed to see Kevin for half an hour every two hours. Each time we go into his room, we are buried with new information. We only get half an hour to process the information and talk to the nurses, then we have to sit in the waiting room for another hour and a half awaiting the next visitation. Our patience is being tested, but we’re trying desperately to pass the test. We spent some time today watching “17 Again,” which, while not the best movie ever made, was the perfect, brainless distraction for making us smile and chuckle at its corniness.
Thank you to everyone for your healing thoughts and prayers. Please keep them coming!!
The ICU’s visiting schedule at Stanford is also very draining. We are only allowed to see Kevin for half an hour every two hours. Each time we go into his room, we are buried with new information. We only get half an hour to process the information and talk to the nurses, then we have to sit in the waiting room for another hour and a half awaiting the next visitation. Our patience is being tested, but we’re trying desperately to pass the test. We spent some time today watching “17 Again,” which, while not the best movie ever made, was the perfect, brainless distraction for making us smile and chuckle at its corniness.
Thank you to everyone for your healing thoughts and prayers. Please keep them coming!!
Tuesday, February 9, 2010
ICU Update
A quick update: Kevin was moved to the Stanford neurological ICU last night. This is more familiar territory for us all.
The ICU experience in Santa Clara revealed a couple people who are really going to bat for Kevin. Kevin’s Santa Clara ICU nurse was amazing; she showed up in the middle of the night and stayed until after most people go home from work. Also, the first head neurological resident that we encountered (and loved) at Stanford came down to Santa Clara in the middle of the night to evaluate Kevin and give advice. Having a friendly face whom you trust to help make medical decisions in an ICU is absolutely invaluable. We owe immense gratitude to the doctors and nurses who have gone above and beyond their normal routines to help Kevin. Also, thank you to all of you who have been thinking of and praying for Kevin. Please keep it up, he needs it very much!
The ICU experience in Santa Clara revealed a couple people who are really going to bat for Kevin. Kevin’s Santa Clara ICU nurse was amazing; she showed up in the middle of the night and stayed until after most people go home from work. Also, the first head neurological resident that we encountered (and loved) at Stanford came down to Santa Clara in the middle of the night to evaluate Kevin and give advice. Having a friendly face whom you trust to help make medical decisions in an ICU is absolutely invaluable. We owe immense gratitude to the doctors and nurses who have gone above and beyond their normal routines to help Kevin. Also, thank you to all of you who have been thinking of and praying for Kevin. Please keep it up, he needs it very much!
Monday, February 8, 2010
Calling All Prayers and Thoughts
In the middle of last night, Kevin had to go to the ICU in Santa Clara. It appears that he has bleeding in his brain stem, which was probably caused by the radiation. This significantly worsened his symptoms, and he has been intubated because he was having a lot of trouble swallowing and breathing. They also needed to sedate him in order to intubate him. We are working toward getting him transported back to the neuro ICU at Stanford. We will post updates when we know more. For the time being, please send many, many thoughts and prayers Kevin's way. His condition is very serious, and he needs every bit of positive and hopeful energy we can send him. Thank you, from the bottom of our hearts.
Saturday, February 6, 2010
The Roller Coaster Continues
Kevin’s move to Santa Clara was, in a nutshell, eventful. Several events collided to make “the perfect storm” of difficult issues.
First of all, Kevin’s platelet, red and white blood cell counts were so good that the radiation oncologists decided to restart full cranial-spinal radiation (instead of the focused radiation he’d been receiving for the past couple weeks). Kevin does not have any tumors outside the brain stem, but radiating the spinal chord is supposed to prevent cancer’s spread through the spinal fluid. While it’s great in the long run for Kevin to receive this cranial-spinal radiation, he restarted the full radiation treatment the morning before he moved. The increased side effects from the increased radiation, combined with a very large and rich lunch and the anxiety of moving hospitals, made Kevin nauseated around the time of his move. He also had very severe lower back pain, which we thought at the time was also attributed to anxiety.
That is, we thought anxiety was the culprit of his back pain until Friday afternoon, when Kevin passed a kidney stone. This unfortunately developed because he was very dehydrated. The cranial-spinal radiation dehydrates Kevin, and he was never one to drink a lot of liquids anyway. The nausea also doesn’t help him retain liquid, so he is now receiving IV fluids. His back pain is now lessened, so we’re hoping that he’s done with the kidney stones.
Despite this rather large hiccup and his waves of nausea, he is working very hard for the therapists at Santa Clara. He even had therapy today, on Saturday. Sunday looks like it might be more of a resting day. He really needs some relaxation after the past few days!
First of all, Kevin’s platelet, red and white blood cell counts were so good that the radiation oncologists decided to restart full cranial-spinal radiation (instead of the focused radiation he’d been receiving for the past couple weeks). Kevin does not have any tumors outside the brain stem, but radiating the spinal chord is supposed to prevent cancer’s spread through the spinal fluid. While it’s great in the long run for Kevin to receive this cranial-spinal radiation, he restarted the full radiation treatment the morning before he moved. The increased side effects from the increased radiation, combined with a very large and rich lunch and the anxiety of moving hospitals, made Kevin nauseated around the time of his move. He also had very severe lower back pain, which we thought at the time was also attributed to anxiety.
That is, we thought anxiety was the culprit of his back pain until Friday afternoon, when Kevin passed a kidney stone. This unfortunately developed because he was very dehydrated. The cranial-spinal radiation dehydrates Kevin, and he was never one to drink a lot of liquids anyway. The nausea also doesn’t help him retain liquid, so he is now receiving IV fluids. His back pain is now lessened, so we’re hoping that he’s done with the kidney stones.
Despite this rather large hiccup and his waves of nausea, he is working very hard for the therapists at Santa Clara. He even had therapy today, on Saturday. Sunday looks like it might be more of a resting day. He really needs some relaxation after the past few days!
Wednesday, February 3, 2010
Moving to Santa Clara
This afternoon, Kevin is moving to Santa Clara Valley’s Acute Rehab Hospital. We’ve been told that the transportation to and from Stanford every weekday will be smooth and as fast as possible. Supposedly, Kevin will not have to wait around for hours after radiation just to be transported back to Santa Clara.
The rest of us are gearing up for meeting a new set of nurses and therapists and learning the ins and outs of a new hospital. Frankly, we’re excited that we will no longer be the “bad guys” in Kevin’s eyes. With the increased therapy at Santa Clara, we won’t have to be the ones to suggest that Kevin do more exercises or sit in a chair for dinner—activities he really doesn’t want to do, but will do grudgingly if we catch him at a good moment. At Santa Clara, the therapists will probably be the ones, instead of us, who call the shots and tell him what to do. He might also be more willing to do what professional therapists ask of him.
It’s amazing to watch doctors’ and therapists’ reactions here at Stanford as they say goodbye to Kevin. As they give him one last examination, they realize how far Kevin has come since he was in the ICU at the beginning of January. To us, and especially to Kevin, his improvement has been painstakingly slow. A big improvement from one week to the next is something as small as being able to slowly straighten his left arm. With improvements this small, it’s hard for those of us who are with him several hours each day to notice them. However, the doctors who come in once every couple days are blown away by his progress. Some are positively giddy at how far Kevin has come; they react as if Kevin is one of the fastest-recovering patients they’ve ever seen. Maybe they react this way to bolster Kevin’s spirits, but they seem honestly surprised and thrilled. Their joy at Kevin’s progress is wonderful to hear, but it also has been a sobering reminder that if this is fast, we can’t even imagine the strength and perseverance it takes for most people to recover.
The rest of us are gearing up for meeting a new set of nurses and therapists and learning the ins and outs of a new hospital. Frankly, we’re excited that we will no longer be the “bad guys” in Kevin’s eyes. With the increased therapy at Santa Clara, we won’t have to be the ones to suggest that Kevin do more exercises or sit in a chair for dinner—activities he really doesn’t want to do, but will do grudgingly if we catch him at a good moment. At Santa Clara, the therapists will probably be the ones, instead of us, who call the shots and tell him what to do. He might also be more willing to do what professional therapists ask of him.
It’s amazing to watch doctors’ and therapists’ reactions here at Stanford as they say goodbye to Kevin. As they give him one last examination, they realize how far Kevin has come since he was in the ICU at the beginning of January. To us, and especially to Kevin, his improvement has been painstakingly slow. A big improvement from one week to the next is something as small as being able to slowly straighten his left arm. With improvements this small, it’s hard for those of us who are with him several hours each day to notice them. However, the doctors who come in once every couple days are blown away by his progress. Some are positively giddy at how far Kevin has come; they react as if Kevin is one of the fastest-recovering patients they’ve ever seen. Maybe they react this way to bolster Kevin’s spirits, but they seem honestly surprised and thrilled. Their joy at Kevin’s progress is wonderful to hear, but it also has been a sobering reminder that if this is fast, we can’t even imagine the strength and perseverance it takes for most people to recover.
Monday, February 1, 2010
Indecision
Kevin’s lab work for his blood has improved to almost normal levels. Kevin is also improving physically. His movement and control of his left side is getting better, and his stamina for sitting up in a chair is also improving. Both Saturday and Sunday we got him outside twice in the wheelchair. He still enjoys looking at the cars parked outside; there are some nice cars in Palo Alto!
As Kevin improves and the doctors are winding down the medications, his personality, especially his stubbornness, is returning. It’s wonderful that it looks like most of the old Kevin will come back. However, at times it is very frustrating to deal with the real Kevin, who, we all know, loves to debate everything! Furthermore, the steroids exaggerate his argumentativeness. Kathlin also enjoys debating, unlike Kevin’s sister and parents, and Kathlin has always been much better at arguing with him than the rest of us. So once again, on one more count, Kathlin is a totally indispensable part of “Kevin’s posse,” as the attending physician has labeled us.
This attending physician, whom we like very much, by the way, has also informed us that Kevin will probably move out of Stanford sometime this week. A couple weeks ago, we heard that the health insurance company was pressuring everyone to get Kevin out of Stanford, but Kevin wasn’t ready to be moved at that point in time. This week, since Kevin’s bloodwork has stabilized and his motor skills are improving, moving out of Stanford seems like a more realistic possibility.
There are two options that are being tossed around. Option 1: Kevin may go to the Santa Clara Valley Acute Rehab hospital, where he will receive more physical, occupational and speech therapy than he gets as an inpatient at Stanford. Santa Clara is reportedly an excellent facility, and Kevin would receive amazing rehab that will help him recover. The radiation is the most important thing at this point in time; second, Kevin needs lots of therapy to regain his strength, stamina and control. Rehab hospitals shoot for 3 hours of rehab a day.
The problem with Option 1 is the transport; Kevin would have to be transported (by an ambulance or other medical transport) back and forth from Santa Clara to Stanford every weekday for radiation. If the transport people drop Kevin off at Stanford and don’t wait around for his 15-minute radiation appointment to finish, the trip up and back to radiation could take 5 hours (seriously), and that leaves little time in the rest of the day for rehab.
Option 2: We may move Kevin into an apartment literally across the street from Stanford’s Cancer Center. It would be a very short distance from the apartment to radiation. However, it would be a big step to have no nursing care (though Kathlin is an excellent private nurse), and Kevin would still not receive very much therapy. If we did this, we would hope to move into an Acute Rehab Unit as soon as Kevin no longer has to be at Stanford every weekday for radiation.
This decision is a huge exercise in communication. If we thought the communication was rough before—amongst doctors within one hospital—that was nothing compared to trying to get doctors from two hospitals to talk to each other and come up with a solution! We are trying to be very patient and make our wishes clear to every new doctor or caseworker who shows up at Kevin’s door. I’ll put the call out there again: if anyone wants to devise a system to make all these brilliant minds (and I’m not being sarcastic here, I mean that seriously) talk to each other, you’d be able to make your million!
As Kevin improves and the doctors are winding down the medications, his personality, especially his stubbornness, is returning. It’s wonderful that it looks like most of the old Kevin will come back. However, at times it is very frustrating to deal with the real Kevin, who, we all know, loves to debate everything! Furthermore, the steroids exaggerate his argumentativeness. Kathlin also enjoys debating, unlike Kevin’s sister and parents, and Kathlin has always been much better at arguing with him than the rest of us. So once again, on one more count, Kathlin is a totally indispensable part of “Kevin’s posse,” as the attending physician has labeled us.
This attending physician, whom we like very much, by the way, has also informed us that Kevin will probably move out of Stanford sometime this week. A couple weeks ago, we heard that the health insurance company was pressuring everyone to get Kevin out of Stanford, but Kevin wasn’t ready to be moved at that point in time. This week, since Kevin’s bloodwork has stabilized and his motor skills are improving, moving out of Stanford seems like a more realistic possibility.
There are two options that are being tossed around. Option 1: Kevin may go to the Santa Clara Valley Acute Rehab hospital, where he will receive more physical, occupational and speech therapy than he gets as an inpatient at Stanford. Santa Clara is reportedly an excellent facility, and Kevin would receive amazing rehab that will help him recover. The radiation is the most important thing at this point in time; second, Kevin needs lots of therapy to regain his strength, stamina and control. Rehab hospitals shoot for 3 hours of rehab a day.
The problem with Option 1 is the transport; Kevin would have to be transported (by an ambulance or other medical transport) back and forth from Santa Clara to Stanford every weekday for radiation. If the transport people drop Kevin off at Stanford and don’t wait around for his 15-minute radiation appointment to finish, the trip up and back to radiation could take 5 hours (seriously), and that leaves little time in the rest of the day for rehab.
Option 2: We may move Kevin into an apartment literally across the street from Stanford’s Cancer Center. It would be a very short distance from the apartment to radiation. However, it would be a big step to have no nursing care (though Kathlin is an excellent private nurse), and Kevin would still not receive very much therapy. If we did this, we would hope to move into an Acute Rehab Unit as soon as Kevin no longer has to be at Stanford every weekday for radiation.
This decision is a huge exercise in communication. If we thought the communication was rough before—amongst doctors within one hospital—that was nothing compared to trying to get doctors from two hospitals to talk to each other and come up with a solution! We are trying to be very patient and make our wishes clear to every new doctor or caseworker who shows up at Kevin’s door. I’ll put the call out there again: if anyone wants to devise a system to make all these brilliant minds (and I’m not being sarcastic here, I mean that seriously) talk to each other, you’d be able to make your million!
