FathersStory's Blog

(For those of you who have been following this blog, thank you.  And my apologies for the delay in updating this.  But you will see the reason why at the end of this posting.)

            Then Stephen said he wasn’t feeling too well.  My wife took his temperature and he had a fever.  Those were the warning signs we were told about.  My wife called the oncology office where Stephen was being treated, and fortunately, the doctor Stephen was seeing was on call.  He told them to go to the hospital.

            Once Stephen got there, he received an oxygen mask and an IV.  He also got a shot in the arm to increase his white blood count.  He received another shot in the stomach, of all places, to prevent clotting.  His white blood count started rising, but he still had to stay in the hospital at least for the next day.

            In the meantime, I’m in California, wondering what I should do… and waiting to hear from my wife.  Tom and I got something to eat, but I couldn’t eat anything.  I figured the best thing to do was to go back to the hotel.

            Once I got there, my wife called and said Stephen was fine.  He had to stay in the hospital at least for the next day, but he had been stabilized. I asked my wife if she wanted me to come home.  She said no, stay out there and be with Tom.

            So I went to sleep, concerned about Stephen, and knowing it would be a short night.  I was encouraged to get up early on New Year’s Day, shortly after 4am, to get a parking spot at the Rose Bowl, then walk to the Tournament of Roses parade.  Remember, I had a media credential that offered me limited access, so my purpose in going early was not only to get a parking space, but also to try to buy a ticket for a seat at the parade.

            I quickly found out that wasn’t going to be the case.  My media credential did get me through several checkpoints so I could get to the front of the parade route.  At the beginning of the Tournament of Roses Parade, before the marching units get in view of the TV cameras, it’s just like any neighborhood parade.  People put out blankets and chairs in front of their houses to secure their viewing spots.  And there was enough room on the sidewalk to get a good view, if you found the right spot in between the trees.

            I found such a spot in front of a house that had several rows of chairs on the parkway, and I stood in back of the last row of chairs.  It was soon afterwards that the owner of the house came out to add some chairs or wipe them off.  After he made a couple of trips to and from the house, I made a comment to him about trying to achieve feng shui with his chair arrangement.  Fortunately, he saw the humor in my remark and we started to talk.  He asked about me, knowing I had some affiliation with Illinois because I had a U of I baseball cap on.  But when I tried to answer, the words wouldn’t come out.   I couldn’t say the words that my son, being treated with cancer, is in the hospital.  And I told him how this was to be a family vacation.  I had to stop several times as I was telling him all this, to keep from breaking down.

            He listened intently to me, offering words of support, and he invited me to be included in his parade viewing party.  I tried to decline, figuring he had all the seats accounted for, but he insisted.  So I sat in the last row.  He offered me coffee (That early in the morning, it was chilly, even for southern California.) and something to eat.  And he was as hospitable as he could be, periodically checking on me to see if I was okay.

            His gesture of kindness was very touching.  And the people who sat around me were very understanding as well.  Afterwards, he invited me in with the rest of his group to partake in an extensive brunch.

            I stayed for a brief time and thanked him for his kindness.  His name was Scott Fellows, and he was so nice to me.  That’s something I have remembered often since it happened.

            As I waited for the parade to start, I talked with my wife.  She said Stephen had a good night, and that she would be seeing him later that day.  She watched the Rose Bowl with Stephen in his hospital room.  One of his uncles was there as well.

            As they were watching the game (which wasn’t great from the Illinois point of view, though still a spectacle to see), Stephen started pulling at his hair, and some of it started to come out.  Well, it was Day 16 since he started his chemo treatment, and we were told that it was about this time that his hair would start coming out.

            By the next day, Stephen was released from the hospital, and he was home by about mid-afternoon.  With the new development with his hair, he decided to shave his head.  When I got home from California that night, my first sight of him was with a ski cap on.  It would be a fixture of his wardrobe for the next couple of months.

            Next, more chemo, and a new look.

(The reason there’s been a delay in the updates to this blog is that my father became ill and was hospitalized soon after the last entry was posted.  His condition worsened, and he passed away last week.  We buried him today.  But writing this after all that had happened has helped me cope with his passing.  So I thank you for your patience, and I ask that you remember my dad in your prayers.)

            With Stephen feeling better as he recovers from his first full blast of chemo, the focus turned to his brother Tom.  Remember in an earlier blog I said he was able to get four Rose Bowl tickets.  I told him to get them, on the chance that Stephen might be able to travel and that we might still be able to fulfill our goal of a family vacation over the holidays.

            But even though Stephen was getting better, the risks of him traveling just didn’t seem to be worth it.  One of the big dangers following a full week of chemo is the possibility of infection.  If he went, he would be around big crowds of people all weekend, and the risk wouldn’t be worth the reward.

            And besides, he probably would want to spend New Year’s at home with his friends, rather than 2,000 miles away.  Since we did have the tickets, I made offers to several people if they wanted to go, but by this time (right after Christmas), it was getting tough to make travel arrangements.

            My wife and I talked about this, and we concluded that it would be nice if at least one of us were able to be with Tom in California.  After all, it could be a once in a lifetime event, marching in the Tournament of Roses Parade and performing at the Rose Bowl.  She knew I was a big football fan, so she said I should go.  I asked if she wanted to go as well, and she said someone should stay here in case anything goes wrong.  And besides, with two 17-year-olds and New Year’s Eve approaching, some adult supervision would be prudent.  Always the voice of reason.

            So I started to make travel arrangements.  The flight wasn’t cheap, but the hotel wasn’t exorbitant.  Then I tried to make arrangements to be at all of the events where Tom would be performing.  One was a pep rally at the Universal City Walk.  That was no problem, because it was free.  He also was marching in parades at Disneyland and at Universal Studios.  The school was having a function at Universal, so I got a ticket for that.  And somebody at Disneyland was kind enough to get me a pass for a day.

            The big problem was getting a ticket to the parade.  I was able to get a media credential that enabled me to at least get some pictures as the parade passed.  But that would assure my seeing only a small portion of the parade.  At least, for the moment, it was better than nothing.

            The other problem was getting rid of the other three tickets I got for the football game.  Someone at work told me he knew someone who would take any extra tickets I had.  But that person got tickets in another way.  Fortunately, I talked to a neighbor who knew someone else from the neighborhood who was going out there.  I called him, and he sent out an e-mail to people he thought might be interested in going.  The day before I left, someone called and bought the tickets.  One small crisis averted.

            Tom had to be at school by midday on the Friday after Christmas for rehearsal.  The band would be leaving Saturday morning for California.  Tom actually left on Thursday because snow was forecast for Thursday night/Friday.  On that Friday, my wife and I went to see a movie.  On the way home, Tom called from Champaign, just checking in.   I told him how I would be flying out on Saturday, getting there in the evening.  I then gave my wife the phone to talk to him.  She said a couple of words, then gave me the phone back.  She was crying, and couldn’t say anything more.  Other than when we left Stephen when he was going for his operation, we were able to keep our emotions in check.   But after talking about the possibility of a family vacation for so long, emotion at this point took over.  It certainly was understandable.  But I felt so bad.  I offered for her to go in my place.  But she said I should go.

            The next day, my wife drove me to the airport.  It was a relatively quiet ride; I know the emotions of the moment still were hard on both of us, but especially her.  I got out of the minivan, and as I said good-bye, I again said I wished she were coming with me.  She again was on the verge of tears, and I really couldn’t blame her.

            I got out to California late Saturday.  I was staying at a hotel about eight miles from where Tom was, but I figured it was best to stay in that night.  On Sunday, I went to breakfast and to church, and then left for Universal City Walk.  The band marched in to a throng of people at the pep rally, playing all of the school songs.  It was a sight to see, but it was bittersweet for me.  I was glad someone was there from our family to see Tom perform, but I kept wishing that my family were here with me.

            I then made the trip to Disneyland and got a good vantage point for where the band would be performing before they would march through the park.  I met some other band parents and their families, including one whose son also played the sousaphone, like Tom.  They introduced themselves, and I told them of our situation, why I was the only one out there.  I had to catch myself a couple times to keep from letting my emotions get the best of me.

            Again, the band performed and marched in a parade.  Again, I was wishing my family were here to see this.  Once the band was done, they changed out of their uniforms, and Tom and I got a chance to spend some time together, taking a few rides.  By this time I really was glad someone was out there to see him, but it would have been so much fun to have the whole family out.

            The next day, New Year’s Eve, started with my making a trip to Pasadena to get my media credential for the parade.  It was strongly suggested to me that I pick it up the day before, because the crowds would be enormous the day of the parade.  Parking already was bad enough.  I went to the media building, picked up my credential, and then went to the location  where I would be.  It was down the parade route quite a bit, past where the TV cameras were set up.  This wasn’t the ideal situation.  So I made a mental note to try to buy a ticket for a seat.

            Later that day, the marching band performed at Universal.  Much the same at Disneyland, marching through the park. I again was able to spend some time with Tom afterwards, as we saw a couple of shows.

            We were seeing a show called “Waterworld” when my cell phone rang.  I didn’t hear it, because the phone was on vibrate.  Then Tom got a phone call.  It was my wife, saying she was taking Stephen to the hospital.

            My heart sank.  2,000 miles away, feeling helpless.  Next: what prompted the hospital trip, and a gesture of kindness.

            By the time Friday came in his first full week of chemo, Stephen was pretty much wiped out.  And his arm was starting to bother him.  Remember, he had the IV port in his arm the whole week.  So it meant covering it to take a shower, and it also made sleeping somewhat uncomfortable.  It was a relief to finally get the needle out.

            But he still had the anti-nausea medication to take over the weekend.  Again, chemo treatment is cumulative, so those drugs linger in the system even after treatment stops.  We made sure he stuck to the schedule the nurses made for him to take the medication, and it helped.  He didn’t get sick.  He may not have felt the best, but at least he wasn’t throwing up.

            After one week, he still has his hair. We were warned by the doctors that the chemo would make his hair fall out.  Nurse Joan told us during that first week that Day 17 of treatment seems to be the magic time for this to happen.  That would be around New Year’s.  Not sure why, but she says it occurs that day almost like clockwork.

            With Christmas just around the corner, Stephen wanted to do some shopping.  He did a little during his first week, and went out again this weekend.  We were a bit concerned, but we also saw the value in trying to keep his life as normal as possible during this difficult time.

            Monday was Christmas Eve, and Stephen spent part of it getting his one treatment this week.  This was for bleomycin.  It’s a shorter treatment, but it makes you drowsy.  Not so much from the chemo, but because Benadryl is given beforehand, and that can knock you out.

            So far, everything looks good, and Stephen’s keeping his weight up.

            For Christmas, we have a gathering for my wife’s family on Christmas Eve, and my family on Christmas Day.  On Christmas Eve, Santa comes to visit, and it’s usually accompanied by a talent show by some of the nieces and nephews.  In addition, Santa has a book in which he says something praiseworthy for each grandchild, and something they each need to work on.

            For the talent portion, Stephen brought his portable piano.  He played some Christmas carols and also performed the song he sang at the high school Variety Show about his sister.  I know he was tired, but he was a trooper.

            Christmas Day was spent with my family, and Stephen got to play Santa.  He didn’t dress up, but he read off the names of gift recipients.  Christmas had a new meaning for us this year.  I guess when you’re faced with situations like this you appreciate life and family and friends a little more, because you see how blessed you are.

            Stephen started to recover later in the week.  He felt good enough to go out to dinner with us, and saw his cousin play basketball in a tournament at Wheaton South.  So he’s maintaining somewhat of a normal schedule so far, for which we are happy.

            Next… an eventful New Year’s.

            (I know I’m behind on this blog, and I ask your patience.  But you’ll want to keep reading to see how it ends!)

            By this time, our son is more comfortable with telling people about his treatment.  So, from now on in these postings, our son will be referred to by his name, Stephen.  Most people call him Steve.  I’m really the only one who consistently calls him by his full name.  It’s just something I’ve always done.         

One thing about chemo:  it’s boring.  All you do is sit there for 4-5 hours while you get IV after IV.  But it wears on you, and the effect is cumulative.

The first couple of days, Stephen did fine, A little tired, but he still had enough energy to go Christmas shopping and stay up to 1:00 A.M. one night to talk to his brother Tom, who had just gotten home from college for spring break.

One more bit of good news.  He had another blood test, and his AFP level dropped significantly again, this time to 14.  He’s getting closer to the normal level of six or below.

We would take Stephen lunch this week.  Chemo affects your appetite.  Food tastes different these days for him.  What tasted good at the beginning of this first week of treatment was not appealing by the end of the week.  But he will get a taste for something else.  It’s almost like cravings during pregnancy.

An example:  in the effort to keep him hydrated, he’s been trying to drink a lot of water.  But even bottled water isn’t tasting good.  Tom brought home some Vitamin Water from school.  Stephen had a bottle or two and thought it tasted good.  But by the end of the week he couldn’t stand it. 

Stephen has been getting lots of visitors.  His high school is about a mile away from where he gets his chemo treatments, so a number of his friends came to visit him on their lunch time.  One day there were about six people visiting at once, so nurse Joan moved Stephen to a room where all could have seats.  In addition to the big room with the reclining chairs, there are several smaller rooms just off of it where a bit more privacy is afforded, plus the one bigger room mentioned above.

I went to Panera one of the days this week to pick up something for Stephen for lunch.  I saw one of the other teachers there, who also was his assistant soccer coach.  His wife also has cancer, leukemia, to be exact.  He’s found a donor for a bone marrow transplant for her, but her cancer needs to be in remission for the operation to be done.  Please pray for her.

One thing I noticed about him:  he had a crewcut.  We had started to hear things about kids at school shaving their heads in support of Stephen and his soccer coach.  But this was the first evidence I saw.  I saw more when a couple of friends visited Stephen, and they both had ski caps on.  I could tell they had their heads shaved, and they talked about it.  Apparently it caught on with a number of kids at school.

One day after chemo Stephen went to school to visit some of his teachers and wound up taking some pictures with kids who had shaved their heads.  They included the whole soccer team.  It was a wonderful show of support.  It also was the subject of an article in the school newspaper that Friday.  During one of the visits for Stephen that week, one of his friends mentioned the possibility of my shaving my head.  I just filed that away.

Next, chemo over the holidays, and an unexpected roadblock.

               Within an hour, my son and I were at Dr. Grad’s office to begin chemo.  Dr. Grad checked my son over briefly, and explained what was going to happen.  This first day would take four to five hours of my son getting IV’s.  The doctor explained that my son would be getting the three types of medicine mentioned earlier (BEP, bleomycin, etopicide and cisplatin), along with a lot of hydration and some anti-nausea medication.  He again used the phrase, “You’ll be peeing like a race horse.”

            We then went to the other side of the office where the chemo would be administered.  We entered a long room with about 15 white reclining chairs lined up in a row, with IV stands by all of them.  Somewhat of a sterile looking room, with a room in the middle for the nurses to get their medicines for the patients.

             The nurse who took care of us was named Joan, and she was so nice to our son.  She said he could sit anywhere he wanted (only a couple of the chairs were taken at the time).  She suggested one end of the room where a TV hung overhead.  My son also had control of the remote, so he could watch whatever he wanted.

            She stuck a needle in him to receive the IV fluids.  That needle wouldn’t come out until his treatment ended on Friday, four days from now. About half of the IV fluids administered were to keep him hydrated.  One of the cautions we were told was that he needed to drink a lot of fluids to make sure his kidneys continued to function during chemo.

            One of the first fluids given was a liquid form of Benadryl.  This was to prevent any reaction from the bleomycin.  This was a test dose, to see if there was any reaction.  There wasn’t, but it made my son drowsy, which was not unexpected.

            So for the first day, I watched my son drift in and out of sleep, and we both watched the slow drip, drip, drip from the IV.  One nice touch from the nurses:  they would give you warmed blankets if you wanted to rest.  A small comfort that meant a lot.

            Every so often my son’s slumber would be interrupted by the musical sound of the IV, letting the nurses know that a packet of medication was finishing and that another needed to be hooked up.  That sound got to be quite annoying, because it also would sound if the IV had any problems administering the medication.

            One of the concerns we knew going in about the chemo treatments is the possibility of nausea.  Joan said our son would have to take four prescription drugs to prevent it.  The way it was explained to him is that there are several systems in the body that can trigger nausea, and these drugs are each designed to prevent those triggers from starting.

            Every day this week, he would need to take a drug called Emend before coming in for chemo.  He then would take three other drugs when he got home, at various points through the night, Kytril, Compazine and Atavan.  He would have to take the drugs also on the weekend following this 5-day treatment as well.

            Our son did fine the first several days of chemo, save for being tired.  He ever went out a couple of times that week.  His appetite so far was good, but we were told that would change.

            More about chemo, next.

            My son and I went to the hospital the next day for the PET scan.  Again, this test would take a closer look at the suspicious areas outside the groin area where the cancer may have spread.

            There wasn’t much to the test.  My son was in and out in about 15-20 minutes.  But as we walked out, we saw another neighbor also walking out of the same area… one who did not know of our situation.

            My son went back to school, and we were told we could find out the results of the test the next day.  One problem:  our doctor, Dr. Grad, was out of town.  Now this is a Thursday, and the hope was to start chemo the following Monday.

            We called his office on Friday and talked to another doctor.  Understandably, he was cautious in what he said, since this wasn’t his patient.  But he did tell me that the PET scan registered a positive hit on the lung nodule, and another on one of the lymph nodes.  So that convinced me that we should go ahead with chemo.

            My son called me at work to find out the results.  When I told him, he said “Fantastic,” in his inimitable way.  You could call it a bit sarcastic, but I know he was steeling himself to get chemo started just so it could get over with.

            The weekend came, and my wife and I were involved at the kids’ high school, working concessions for a speech tournament in which our daughter was participating.  By this time, a lot of our son’s friends knew what was happening, and the parents who were helping us out at the school all expressed their concern and support, which was very much appreciated.

We needed some kids to help with concessions as well, and our son was among those who showed up.  I give him a lot of credit. He’s not wallowing in self pity, and although he wasn’t thrilled about helping out, he did show up.  It was better for him once he came and saw some of his friends.  So he’s been living pretty much of a normal life so far, save for doctors’ visits.

Monday morning came, and we hadn’t heard anything about chemo starting.  That was starting to worry me, because this first week would be a 5-day session, with the following two weeks interrupted by Christmas and New Year’s.  I called the doctor’s office about 8:30, and was told to call back about 9:15.  But this was the answering service, and not the doctor’s office.  While I was on the phone with them, I was getting a call.  It was the doctor’s office calling… asking if we could be there within the hour.  I called my son at school and told him I would pick him up.

Next, chemo begins.

(My apologies for not updating this sooner.)

The next day was our road trip to Indianapolis to see Dr. Einhorn.  Even our son was looking forward to it, having heard about the doctor’s connection to Lance Armstrong.  But the trip did present some challenges.  First, we had to be there at 7:30am.  And with me not getting home from work until past 11pm, it was going to be a short night.  Then we realized it would be even shorter, because in the winter there is a time change.  It’s an hour later in Indianapolis.

So when we thought we had to leave by 4am, we now had to leave by 3am.  And there was another problem. A winter storm warning was issued for that night.  The storm was headed northeast, but we faced the possibility of driving through snow to get out of the Chicago area.

Fortunately, the forecasts were off a bit. I got up at 2am and heard the roads were clear.  So I was able to go back to sleep for at least 15 minutes.

We still were out of the house by 3am.  And yes, the roads were clear.  Got out of the Chicago area with no problem.

Well, at least in the amount of traffic, there was no problem.  We encountered another one.  As we traveled on the Indiana Toll Road to get to I-65, we came upon a large number of potholes.  Not on the whole road, but one stretch that probably lasted a quarter mile.  It looked like a minefield.  There was no was to get around them.  They were so bad the CD’s we had in a holder on our minivan’s sun-visor were flying all over the place.  My wife and our son, who were both sleeping, were startled awake. I have NEVER seen so many potholes in such a short span.  We were very lucky that we did not get a flat or incur some axle damage.

After we got through that stretch, the road smoothed out.  I was hoping our van made it through unscathed, and it apparently did.

So we were making our way down I-65 toward Indianapolis.  A relatively humdrum ride.   What I did notice was that we were the only non-semi vehicle on the road for about 75 miles.  It was weird.  And we never saw so many trucks at truck stops.  Not only were the parking lots filled, but they were parked on the side of the road both before and after the truck stop.

The one good thing about leaving so early, we beat most of the rush hour traffic, and made it to the hospital at Indiana University-Purdue University Indianapolis (IUPUI< or, as it is affectionately known, ooey-pooey.)

We came with all of our son’s test results, pathology reports, ultrasounds, and slides from his biopsy of the tumor removed.  A doctor came in to give our son a preliminary examination, similar to what happened at the University of Chicago Hospital.

Then Dr. Einhorn came in.  He sat down with us and the first two things out of his mouth were, “Number one, you do have cancer.  Number two, you will be 100% cured.”  Well, that was a good start.  He went on to explain that there are four types of cancer cells, and the type that our son  has (embryonic) is one of the more treatable ones.  He also talked about the “suspicious” areas to which the cancer may have spread.  And he did talk about chemotherapy.  If that were the course to take, he would recommend the BEP procedure for three cycles, rather than the EP for four.

But then he said something that almost made my wife and me jump out of our chairs. He looked at our son’s last blood test, and took note of how low the AFP level (the tumor marker) had gone.  He said that was an indicator that chemo may not be needed, that my son may already be cured.  He said one course of action could be just to wait, monitor the blood levels, and if they continue to go down, get a CT scan in about a month and just monitor the situation.  So he asked all of us how comfortable our son would be in waiting.  That gave us something to think about.

I asked Dr. Einhorn about the test our son had scheduled for the next day.  It’s called a PET scan, and would focus on the suspicious areas in the lung and and abdominal lymph nodes.  Dr. Einhorn said he would be inclined to cancel the test, and he would talk to Dr. Grad about it.

My wife and I thought how great that would be if this would all end here.  As we walked out, I asked our son what he thought of all this.  He said, “I’m really going to be pissed if I wait a month and then find out I still have to go through it.” He had a point.  If he started chemo now, he’d be done by mid-February and still have the rest of his senior year to do what he wants (try out for the spring musical, prom, etc).  But if he waited a month or more, then all his other activities would be impacted.  Even though he would miss a lot of school, it would be minimized because of the holiday break.

So after a late breakfast in downtown Indianapolis and a brief visit to a shopping mall, we went home.  Upon arriving, I sent Dr. Einhorn an e-mail, first asking if he was able to talk with Dr. Grad about canceling the PET scan.  I know Dr. Grad went to some length getting it approved.  Then I addressed our son’s concern about waiting.  I asked what if the tumor marker level stays the same or starts to rise.  He said that would be an indicator to start chemo.

We talked more with our son about this.  Dr. Grad had indicated he would be inclined to start chemo next week (five days from now), and our son has been getting himself mentally ready for it.  As we talked, he again expressed his desire to get it over with.  He said if he were going to be cured 100% either way, why not take the sure way now, instead of having this hang over his head.

It was hard to argue with that.  As parents, my wife and I didn’t want to see him go through with chemo if he didn’t have to.  But the uncertainty is a factor, and we could understand his way of thinking.

So that led me to send another e-mail to Dr. Einhorn.  I asked point-blank what are the chances that our son right now is cured.  He said his best estimate would be 20%.  He went on to say that there’s a 50% chance that the nodule in the lung is nothing.  Same with one of the enlarged nodes in the abdomen.  But the other node in the abdomen is more worrisome because that is a typical place for testicular cancer to spread.

He went on to say that even if his tumor marker returns to normal and a CT scan is normal, there still would be a 50% chance that our son would relapse and still have to undergo chemo.

Even with those numbers, he still recommends waiting.  He said whether we wait or have it done now, he still would have the probability of being 100% cured.  He empathized with our son being just 17, and he expressed the notion that our son shouldn’t have to make such a difficult choice at such a young age.  But he also said our son can choose what is best for him.

As far as the PET scan was concerned, Dr. Einhorn said he would do the test only if it would influence our decision.  He went on to explain that if he was leaning toward waiting and the PET scan was positive, he would go ahead with chemo.  If he were leaning toward chemo and the PET scan was negative, he would lean toward doing nothing at this point.  He said if that is our thinking, we should go ahead with the test.

So at that point we decided that we should go ahead with the PET scan as scheduled. 

(To give you a time frame reference, this is about two weeks before Christmas.)

The day before we began our doctor odyssey, our son performed in his school’s Madrigal dinner.  Two shows that day, less than two weeks after his surgery.  It was a long day for him but an enjoyable one.  He did well, as did the entire ensemble.  Just seeing him up there knowing what he went through already and what still awaits him was remarkable.

The next day, Monday, he had to undergo one more test.  This was to check his lung function, to make sure he could handle chemotherapy.   He sat in a glass booth and just blew into a tube as hard as he could.  And that was it.  He did fine.

That afternoon, we got the first of our second opinions from oncologists.  We saw Dr. Daniel Shevrin at Glenbrook Hospital.   This was a doctor recommended to us by another doctor, who was recommended to us by one of the neighbors.  But I also did some independent checking, and everything I heard was favorable.

It turns out he knew Dr. Grad.  As a matter of fact, they were in the same practice together for a time.  Dr. Shevrin basically told us the same thing Dr. Grad told us, but he went into a bit more detail as to how our son would be feeling during the chemo.  For the first week of his five-day a week treatments he would feel okay the first few days, but then may start to feel queasy by the end of the week.  The second week (a one-day treatment), he would start to feel fatigued.  Then by the third week (also a one-day treatment), he would start to feel better, until the cycle started again.

The visit was reassuring for us.  Dr. Shevrin expressed a lot of support for Dr. Grad and was willing to help in any way.  He also realized that it would be problematic for us to do the chemo with him, because of the increased travel.   But at least we knew we were on the right track.

I took off work this day to go with our son for the lung test in the morning and for the visit to Dr. Shevrin in the afternoon.  That night I ran an errand to a Wal-Mart just around the corner from us.  And I happen to run into one of the neighbors.  He said hello, then realizing I work nights, he asked why I wasn’t at work.  I just said I took the day off and did not offer an explanation.

Still, at this point, only three of the neighbors knew.  And it was still awkward for us to bring it up.  It’s not something that normally is done in the normal course of conversation.

The next day, I went to work, but intended to meet my wife and our son at the University of Chicago Hospital for a consultation with Dr. Walter Stadler.  This was a doctor recommended by a colleague of mine at work, who got a name of a doctor at U of C from a former colleague of his.  I called this doctor, and he told me I didn’t want to see him, but rather, Dr. Stadler, who was considered an expert in this field, a fact that would be verified later that day.

We got down there, were registered right away, then waited.  And waited.  For three hours.  We really couldn’t complain, because Dr. Stadler was fitting us into what I’m sure was a very busy schedule.  We did see a doctor during that wait time, who asked our son some questions and did a preliminary examination. 

When we registered, we also handed in some slides taken from a biopsy of the tumor that was removed.  We picked them up earlier that day from the hospital, where our son also had a blood test… his first since before the surgery.

Dr. Stadler finally saw us and was very gracious in the time he spent with us.  Like Dr. Shevrin, he basically told us what we already knew and what we could expect in terms of side effects and the likelihood of being cured.  But he threw in a wrinkle, one that Dr. Grad first alerted us about in treating this type of cancer.  Dr. Stadler was an advocate of four cycles of treatment with etopicide and cysplatin, and not using bleomycin, because of potential side-effects.

He also knew Dr. Grad and expressed confidence in him.  He noted the distance from our house to the U of C, and  the difficulty of the commute should we decide to go with him.  But he also gave us one insight, about AFP, the tumor marker in the blood tests.  He said the tumor marker has a half-life of about five to seven days.  Meaning, that every five to seven days the tumor marker should drop by a half.  If it doesn’t, that could be an indicator that cancer is still present.

I went back to work, but during the time we were waiting, I called our hospital to see if Stephen’s blood test results from earlier that day were ready.  They were, and I had them faxed to my office.  They were waiting for me when I got back   In an earlier posting on this blog, I told the results of the blood test taken when we saw a second doctor the day before our son’s surgery, which showed an AFP of about 230-240.  I didn’t tell the result of the first blood test that was done the first day of all this.  That reading was 204.

So, given Dr. Stadler’s guide of the half-life of this tumor marker, this latest blood test should show an AFP somewhere between 50 and 60.  The result from this latest test showed an AFP of 37.  So that was dropping faster than expected, a good thing.  It gave us encouragement as we were to see Dr. Einhorn the next day in Indianapolis.

Oh, the expertise of Dr. Stadler:  It was verified in the latest edition of Chicago Magazine.  I saw it when I got back to the office.  The cover story was about the best doctors in the Chicago area.  Dr. Stadler was among those listed for oncology.  So after seeing three doctors, we were feeling pretty good about all of them.

Next, a road trip.

 A couple of more things about our visit to Dr. Grad.  He wanted us to schedule a test for my son’s lung function, to make sure he can handle the chemotherapy.  That’s scheduled for Monday.

Another thing we brought up were possible travel plans.  My wife has been saying for a couple of months that it would be nice if we could take a family vacation over the holidays.  I told her in response before all this came up that our destination may be picked for us.  What hasn’t been mentioned yet in this forum is that we have another son in college, at the University of Illinois.  He’s in the Marching Illini.  We found out this past Sunday that Illinois’ football team would be going to the Rose Bowl, and thus, so would our son.

So we brought the idea of this trip up to Dr. Grad.  Being a U of I graduate, he understood.  He thought it would be okay for our younger son to travel.  And besides, he said, there are worse places to be than Cedars-Sinai Hospital in Los Angeles if we had to go to an emergency room.

Well, the prospect of that wasn’t too encouraging, but we thought we wouldn’t be going anyway.  I made an attempt to get tickets but could not.  I even asked our band member, who got two tickets to each home football game during the regular season.  He said he didn’t know of any tickets being made available.

Until the day after we saw Dr. Grad.  Our college son called me at work and said, “I can get tickets.”  How many, I asked.  He said he could get four, which would cover everybody in our family.  But we’d have to pay for them.  I brought it up to my wife, but we put off doing anything immediately.

On my way to work the next day, I called my son at U of I to find out when he needed to know about the tickets.  I left a voice mail, and then he called me back about 4pm that day.  He said he needed to know by 5pm; that was the deadline to purchase these tickets.  I tried getting in touch with my wife but could not.  So I told my son to get the tickets, and we would work things out later.

On the next day, Saturday, we were invited to the new house of a family who just moved out of our neighborhood.  By this time, only three families in the neighborhood knew about our son.  We went out with a group of neighbors the weekend before for dinner and a comedy show, with two of the families who knew in attendance.  We got them on the side and thanked them for all they had done and all their support.  We didn’t tell anyone else, though my wife suspected some of the other neighbors knew something may be up.

And on this night, it certainly wasn’t our intent to tell anybody, with the holidays coming up and the occasion of this house-warming party.  We got there and mingled, talking with a number of the neighbors.  A couple of them already knew that I was able to get tickets for the Rose Bowl, and word, I guess, started to get around.  One of our neighbors who didn’t know found out and caught up with me later to talk to me about it.  He got really excited and interested.  He said, “You’re going, aren’t you?”

I told him, “Well, there are some things we have to work through first.”

He continued, “But you’ve already done the hardest past… finding the tickets.  How can you not go?”

I said, “Well, there are some issues we have to work out.”

He said, “And you have a son in the band!  You HAVE to be there.”

“We’ll see.  We still haven’t got a flight or a hotel, and it could get pricy.”

He went on, “But there are a number of ways you can get to L.A.  There are several airports there,  You could also fly to San Diego, or even Las Vegas or Phoenix, and drive the rest of the way.”

I reiterated, “Well, we still have to work through some things first.”

“And the parade,” he said.  Sometimes the Tournament of Roses Parade is even better than the game.  You gotta go.  You’re so close to the floats you can smell the flowers.”

“We’ll see,” I said.

He also offered to help with securing grandstand tickets for me to the parade, because he knew some people out there with connections.  I thanked him for his offer and was able to move on.

I didn’t want to tell him the real reason for our hesitation.  I and my wife talked ahead of time about not bringing up our son’s situation at this party, because we knew it would then dominate the conversation, and we didn’t want that to happen on such a festive occasion.  It wasn’t his fault.  I really felt sorry for him because he didn’t know.  When he later found out a few weeks later, he called to apologize, saying he felt so bad about it.  But he didn’t know.  I thought his interest and enthusiasm for our situation was sweet; I just didn’t know how to tell him, and it just wasn’t the right time.

During the past couple of days, through the recommendations of friends and colleagues, we have lined up second and third opinions from oncologists.  That’s all happening next week.  And we’re also going to see Dr. Einhorn in Indianapolis.  Those visits, in the next installment.

So now we go to oncologists to see what kind of treatment my son will have.  We got the name of one from the urologist who did the surgery.  And friends have been helpful in giving us names of other oncologists.  They’re all reported to be very good.

But they also can be hard to see.  I’ve avoided names for the most part in writing this, but I will give the names of the oncologists, because they all were flexible enough to fit us into their schedule, and were more than generous enough with their time.

The name of the oncologist we were given from the surgeon is Dr. Gary Grad.  At first, we wouldn’t have been able to see him for a week.  But one day as I arrived at work, his office called me on my cell phone, asking if we could see him late that day.  I called my wife and son, and they went.  I was able to listen in by speaker phone in an office at work.

Dr. Grad told us the tumor my son had removed was embrinal, meaning it is more prone to spread.  And a couple of features are raising concerns.  First, the blood work he had done.  There is a so-called “tumor marker” in the blood, called alpha fetaprotein, or AFP.  My son had a level of more than 200 in the blood taken before the surgery.  That’s an indicator of malignancy.  Another blood test will be scheduled for next week.  Secondly, as the urologist told us, Dr. Grad mentioned the two enlarged lymph nodes in the abdomen and the nodule on the lung.  He termed those areas “suspicious,” meaning there could be cancer cells there, but it’s no guarantee.  Dr. Grad also suggested my son have a PET scan, which would zero in on those suspicious areas and give more of an indication whether they are cancerous.

Dr. Grad said my son is in the third stage of cancer, which is somewhat advanced.  He said that based on the nodule on the lung.  But he also called my son a “good risk,” with a good prognosis and outcome.

Then he talked about the specifics of chemotherapy.  There are two accepted courses of treatment.  One is called BEP, the administering of three drugs, bleomycin, etoposide and cisplatin.  My son would have three courses of this.  Treatment the first week would be Monday through Friday, about four hours a day.  The second and third weeks would have treatment just once, for bleomycin.  The cycle would repeat three times, for nine weeks of chemo.

The possible side effects: there could be restrictions in blood vessels, but those  cases, we’re told are rare. It also could cause problems in lung function, but that risk is low if the lungs and kidneys are okay.

The second course of treatment is EP, just the two drugs etoposide and cisplatin, taking out the bleomycin.  The drawbacks here:  first, it’s four courses of treatment, so it would be a longer span.  Secondly, it can cause numbness in the extremities, which could be permanent.  And finally, in rare cases, there could be kidney damage.

I know doctors have to cover themselves and give all possible outcomes, including ones that are rare, but all this sounds pretty scary to us at this time.  Dr. Grad said  he will be checking my son’s lung and kidney functions throughout the treatment and will be taking blood tests to see if that AFP tumor marker falls.  One encouraging note:  Dr. Grad said the relapse rate from this type of cancer is low. 

            He also suggested we see a doctor in Indianapolis, Dr. Larry Einhorn, at the University of Indiana.  Dr. Grad described him as a “doctor’s doctor.”  Dr. Einhorn, we were told, was very instrumental in the treatment of Lance Armstrong.  It sounded like a great idea.

            Other things Dr. Grad told us.  My son would lose his hair. And he and the nurses would be monitoring my son’s white blood count.  He could develop a fever in the second or third weeks of each course.  If that happens, he should go to the hospital.  But he also said he couldn’t remember that last time a patient had to be hospitalized (remember that).

            So now we have a better idea of what lies ahead.  Next… more doctors, but before that, an awkward situation.

The next day (Saturday) I was doing some yardwork when I started talking over the fence with our next door neighbor.  My wife had told her about our son, so that’s two families in the neighborhood who now know.  She also was very supportive, but we still were keeping low with the news.

My son has a CT scan scheduled for today.  The preparation is to drink a barium concoction.  They give you flavoring to put in it, but he said it still tasted awful.

Good thing I did the yardwork early because it started snowing shortly before we left for the hospital.  We registered, and went back to the testing area.  He was taken right away, so all we could do was wait.  The test didn’t take long, and we went home.  We’d find out the results on Monday, one week after the initial doctor visit.  It had been an eventful week, to say the least.

Monday came, and it was the first day our son went back to school since the surgery.  My wife asked him if anyone at school asked him about it.  He said, "If they asked I told."  A statement that would manifest itself later this day.

I took the day off work for his doctor’s appointment.  And the day off work, the day just went slowly.  That made the waiting until the appointment, which was after school that day, even more anxious.  Having heard the phone call last week from the doctor who gave us the second opinion saying he would recommend chemotherapy, I had an idea what would be said.  But I still held out hope.

That hope was shattered.  We met with the urologist who did the surgery, and he said there was evidence that the cancer may have spread.  There were two enlarged lymph nodes in my son’s abdomen.  Not by much but they were enlarged.  Also, there was a nodule on his lung.  All evidence that the tumor was a non-seminoma, which is the more aggressive kind of tumor.  He recommended chemotherapy and gave us the name of a local oncologist.  We left, knowing the road ahead would be bumpy.

We got home and had dinner.  As we were cleaning up, the doorbell rang.  It was another neighbor.  She asked to see my wife.  I led her into the kitchen.  As soon as she saw my wife, she started crying.  So did my wife, and they hugged.  I’m watching this and I said, “Sandy (the mom of my son’s best friend) told you, didn’t she?”  No, she said, she heard it from her daughter.

So our son had started telling some of his friends.  That showed us he was coming to grips with this, which was a good thing.

Our neighbor offered to make us dinner, get additional doctors, do whatever she and her family could.  She also gave our son a cross from her mother.  The cross, she said, contained part of the cross that was used in Jesus’ crucifixion.  She also gave us a small bottle of holy oil, encouraging us to anoint our son with it.

A very special gift.  She also knew a neurologist at a north suburban hospital and offered to call her to find somebody we could talk to about this.  We asked her to do it, figuring more information is better than less.  Her concern touched us deeply.  But we still were hesitant to tell people about our son’s condition.  We figured it eventually would come out.  But we didn’t want to accelerate the process.  Heck, even our parents still don’t know at this point.

Next… meeting with oncologists to discuss what treatment awaits our son. And we all have our LIVESTRONG bracelets now.

It’s the day after my son’s surgery.  He’s doing well.  Slept late, and the one thing that’s bothering him is the incision rubbing against the elastic band of his shorts.  It just happens to hit at the right spot.

Until now, nobody knows outside of some immediate family what has happened.  His friends don’t know.  They know he was out of school and had surgery, but they don’t know what for.

Today his best friend called.  Even he didn’t know at this point.  He was asking what type of surgery my son had.  My son told him to go to lancearmstrong.com.  After he did, here’s how the conversation went.

“Lung cancer?  You have lung cancer?”

“Keep reading.”

“Brain cancer?  You have brain cancer?”

“Keep reading.”

“Oh.”

So now his best friend knew.  He told his parents, who are like parents to him as well.  They all came over that night, and their visit provided a much needed lift.  I was still at work, but I called when they were over. My wife answered the phone and she was in a good mood, laughing.  I was glad to hear her laugh.  We needed some levity at that point.

That family has been great to us, and to our son.  The father jokes that at times when he comes home, he sees our son sitting in his chair.  And our son is making himself very comfortable in it.  Their home is a second home for our son.  It’s really neat to see.  They leave with assurances that they wouldn’t tell anyone.

The next day my cell phone rings on my way to work.  It’s the doctor whom we got the second opinion from.  He called to tell me the results of the blood work he took.  It showed an elevated level in the alpha fetaprotein element.  It’s called a tumor marker.  The normal level should be anywhere from a zero to a 6.  It was about 230-240.  That’s an indicator of cancer.  He recommended two chemotherapy sessions.   We would find out more when my son undergoes a CT scan tomorrow.

When I got home from work, my son was the only one still