Welcome To Seth Paul's Home Page

About His Journey With Osteosarcoma

April 20, 1983 - May 6, 2007

One Year Later

Two Years Later

Three Years Later

Four Years Later

Five Years Later

This page will help disseminate information about Seth as he goes through treatment for osteosarcoma (a form of bone cancer).

Seth lost his battle on May 6, 2007 - I will be keeping this page up for anyone who may find it helpful, but adding tribute and memorial pieces as time goes on.

View Seth's Guestbook

You are visitor to my page!

I have set up a photo's page as a seperate page. To view it please click here.

Do's & Don'ts for Bereaved Parents

Update as of May 6, 2012
Update as of April 20, 2012
Update as of May 6, 2011
Update as of April 20, 2011
Update as of May 6, 2010
Update as of April 20, 2010
Update as of May 6, 2009
Update as of April 20, 2009
Update as of January 26, 2009
Update as of May 6, 2008
Update as of November 6, 2007
Update as of September 26, 2007
Update as of August 23, 2007
Update as of August 12, 2007
Update as of August 1, 2007
Update as of May 6, 2007
Update as of March 13, 2007
Update as of October 4, 2006
Update as of August 29, 2006
Update as of August 26, 2006
Update as of August 22, 2006
Update as of August 10, 2006
Update as of July 27, 2006
Update as of June 5, 2006
Update as of May 8, 2006
Update as of March 1, 2006
Update as of February 3, 2005
Update as of January 5, 2004
Update as of November 18, 2003
Update as of July 3, 2002
Update as of June 20, 2002
Update as of June 14, 2002
Update as of December 19, 2001
Update as of December 12, 2001
Update as of November 19, 2001
Update as of November 6, 2001
Update as of October 26, 2001
Update as of October 18, 2001
Update as of October 12, 2001
Update as of October 2, 2001
Update as of July 7, 2001 (Graduation Photo's)
Update as of June 15, 2001 (Prom Photo's)
Update as of March 11, 2001
Update as of February 2, 2001
Update as of January 12, 2001
Update as of November 21, 2000
Update as of October 30, 2000
Update as of August 18, 2000
Update as of August 16, 2000
Update as of August 11, 2000
Update as of July 6, 2000
Update as of July 2, 2000
Update as of June 20, 2000
Update as of June 6, 2000
Update as of May 10, 2000
Update as of April 8, 2000
Update as of April 5, 2000
Update as of March 30, 2000
Update as of March 27, 2000
Update as of March 13, 2000
Update as of February 23, 2000
Update as of February 15, 2000
Update as of January 22, 2000
Update as of February 2, 2000

Update on January 22, 2000
Seth will be going up to Columbia Presbyterian hospital on Monday to meet with doctors and start on his road to recovery. According to what I've read, he can expect about three months of chemotherapy to shrink the tumor, surgery to remove the tumor, followed by about a year of follow-up chemotherapy. As we know more, I'll post it here.

Today was a big step for Seth. After having very long hair for a couple of years (eight inch ponytail), he decided that in order to prepare for the hair loss that comes from chemotherapy, he would get his hair cut. The picture on top of this page is what he looks like as of today, but we still have his ponytail (he's keeping it until he can grow another!).

For those of you who don't know Seth, he is 16 years old, loves music, medieval role playing games, Dragon Ball Z and a girl in Florida named Jackie. He is keeping a good attitude at what lies in front of him (considering what will be required) and is, in general, a really great kid. I may be biased (what father isn't) but I'm very proud of the young man Seth has become. Please keep him in your thoughts and prayers over the months ahead as he recovers from this monster that has attacked him.

Update on February 2, 2000
Seth has gone through a lot the past couple of weeks. On Janaury 24 he was admitted to Columbia-Presbyterian Hospital in Manhattan for some tests and to begin his treatment. On the 27th Seth had a broviac installed (a central IV line connected surgically to a major vein). Earlier in the day, he had an MRI done of his knee (because his bone scans showed a possible metastasis of the cancer to that site - his primary site is his pelvis). As Seth was in the recovery room, the doctors came to talk to me. They told me the initial reading of the MRI showed positive to his knee - this was devastating to me as they explained this reduced his chances for recovery from about 75% to about 25%. It also made amputation of the entire limb (without a chance of a prosthetic device as well) a foregone conclusion. This also came at just the moment Seth needed me to comfort him in the recovery room (he doesn't handle surgery very well). Don't ask me how, but I was able to keep it together while I helped Seth through r ecovery (who said God doesn't take an active role anymore!). I spent that night with Seth at his bedside trying to keep him as pain free as possible (he's on a fairly hefty regimen of morphine and we needed to get it increased). To top it all off, the boy who was sharing Seth's room had his monitor alarm going off every five minutes all night long! Finally, Seth was relatively pain free and comfortable so I was able to go home at about 9:00 AM. He had a thallium scan scheduled for sometime that day that would confirm the metastasis.

After running some errands in the morning and early afternoon (and really crying for the first time in 33 years), I was headed back to see Seth that night (Friday) when my wife let me know that she spoke with Dr. Joan Graziano (the oncologist we will be working with locally on Staten Island) and the thallium scan and further examination of the MRI showed that the cancer had NOT spread to his knee and was still localized in his hip - WHAT WONDERFUL NEWS! This once again brought Seth's chances back up to between 50%-75% (still a bit lower because of the size of the tumor: 15.5 cm X 12 cm X 11 cm). It also raises the hope of resecting the tumor while sparing the limb!

Seth also started his first round of chemotherapy on Saturday morning (1/30). He will be getting two rounds of Ifosfamide followed by two rounds of Methotrexate. Again, because of the size of the tumor, he will be getting a third greater dose that standard in hopes of shrinking it. They are treating this very aggressively - as if it had metastasized - and will be checking progress via scans at six and twelve weeks. After that, the tumor will be removed surgically and chemo will continue with the prior drugs as well as Adriamycin (Doxorubicin) and Cisplatin over next nine or so months.

Today is February 2 and I will be going up to meet with Seth's doctors (the team is headed by Dr. James Garvin and Dr. Linda Granowetter, two of the best there are for sarcomas) to discuss Seth's release and trip home tommorrow. His pain is starting to get under control (still on fairly hefty doses of morphine - but orally now instead of IV) and his last treatment for this round is today. We expect Seth to begin his second round on February 14 on Staten Island (a lot more convenient for the whole family and friends). I'll let you all know more next week sometime.

Update on February 15, 2000
Seth has started his second round of chemo. Thankfully, we are able to have it administered locally on Staten Island, at St. Vincent's Medical Center. Dr. Joan Graziano, a really phenomenal pediatric oncologist (who is also treating my grand-daughter Arielle) is overseeing Seth's treatments out here. Good news is that when Dr. Joan examined him before round two started, she felt the tumor had already started to respond to the chemo and had started to shrink!

It's really a boon to have Seth in a local hospital - Friend's can visit as well as family spending a considerably larger amount of time with him - Thus helping his psychological outlook. Also, having a private room (all pediatric cancer patients get a private room here) with a VCR helps a bit. There's more room for all Seth's stuff, visitors have some more room and there's nobody traipsing through your space and making noise that isn't there to see you! Harris (friend of the family) gave Seth some 3D puzzles which Seth is putting together with the help of the hospital teacher! They both had a great time yesterday and spent hours on it!

Some bad news is that Seth's hair has started to fall out. Seth has decided that once this starts in earnest, he will get his head shaved (he'd rather be totally bald than have wisps of hair) and he'll wear a cap. It's one of the toughest things that a teenage boy has to face - the pain and nausea can be fought with medication, but hair loss you just have to accept. Seth knows that his hair will grow back (probably even fuller if that is possible) after he's finished with the chemo, but that's of little comfort to him right now.

Anyway, I'll post some more photo's later this week. Check back soon.

Update on February 23, 2000
Seth has finished his second round of chemo. Because of Seth's overall good health (with the exception of the cancer) and everyone's prayers, Seth's blood counts are doing really well. We went to Columbia-Presbyterian yesterday to see Dr. Francis Lee, the orthopedic surgeon who will be performing the surgery to remove the tumor from Seth's pelvis. It is tentatively scheduled for March 30.

We were very impressed with Dr. Lee and he explained what he intends to do in very clear terms that we had no trouble understanding. I was amazed at what he plans - Seth will be having part of his pelvis (the part that the tumor started growing from) removed and will be getting a real bone replacement from a bone bank! This will be bolted in place so the new pelvis will be able to fuse with Seth's remaining pelvis. He will also be getting a non-dislocating polycarbonate hip replacement (because the tumor is also affecting the top of this bone). When asked about the recovery process (I was expecting three to six months) we were amazed when the doctor told us that Seth should be walking in four to five days after the surgery!

Overall a pretty scary process but considering that Seth will keep almost full mobility (not to mention his leg) some really great news! Also, Seth has had his head shaved (I promise I will get some photos up soon). The good thing is that Seth is really a handsome young man and without his hair plus his height (6'4") he looks like a basketball player! I don't know, maybe because of all the folks I've been seeing in the last few months without hair has annured me to it, but Seth doesn't look different to me at all (last time I saw him with this little hair he was around 1 day old! - Which feels like just last week by my time dilated reckoning).

Update on March 13, 2000
Seth has finished his fourth round of chemo. He should be released from the hospital tomorrow. He will be going in for one more round of chemo before his surgery (still scheduled for 3/30). According to Dr. Joan, and Seth as well, the tumor has shrunk considerably. Seth even told me he can barely feel it anymore! Thank God for all miracles!

Seth is doing ok psychologically now (he is not just laying around in the dark) and spends his days sleeping (are all teenagers like this?) and watching TV. If you are one of his friends, he would love to hear from you (after lunchtime please) while he is in the hospital. If you need his phone number, please email me (dad) at webmaster@birdcat.com and I will give it to you along with when he will be hospitalized.

In the meanwhile, I have set up an on-line calendar for Seth so you can see what he will be getting and when. You can see it at www.birdcat.com/cgi-bin/aspexample/calsel.asp?CalGroupDesc=SETH or follow the links from http://www.birdcat.com and click on Calendars.

Update on March 27, 2000
Well, Seth has finished five rounds of chemo (Ifosfamide, Methotrexate, Adriamycin and Cisplatin) and is showing the effects of chemo. His blood counts are very low (neutripenic) and because of that and him having such a tough time with the Peridex and Nystatin (mouthwashses), he has developed some pretty bad mouth and throat sores. As a result, Seth has resisted eating and drinking and needs to be hooked up to an IV to hydrate him. He is down to 166 pounds (at last weighing) from 206 in November.

Yesterday Seth required two units of whole blood and will be getting a platelet transfusion today. His billyrubin counts are a bit off and last week there was blood in his urine (possible liver and kidney problems). On top of all this, Seth has developed a staph infection in his central line (both sides) and may need to have his broviac replaced.

The doctors tell us that these are not major problems and his surgery is still on for Thursday. I'll be updating the web page on Wednesday night and will try to post an update sometime soon after (probably around 4/3 or so). I'll see if the hopsital has a computer with web access so I can update it earlier than that.

Please remember to keep Seth in your prayers at this time. Although the doctors claim everything is going as expected, I still worry about all the little things adding up to a big thing. The surgery he will get is both very aggressive and quite invasive and will require a huge effort from both Dr. Lee (the orthopedic surgeon) during and Seth afterwards.

As an aside, if you are one of Seth's friends, he really needs you right now. Last week, Jessica came and brought him balloons which made him happy (visit more than the balloons). Last Saturday, Trid, John and Tommy came up and visited Seth and really made his day. He needs you ALL to come out of the woodwork and phone and visit him when he is able to receive visitors. It is REALLY IMPORTANT as this raises his spirits more than his mom & I can right now. Nuff said.

Update on March 30, 2000
Seth's surgery has been postponed until next Thursday. After finishing up three rounds of chemotherapy over three weeks (2 of methotrexate along with one of piggybacked adriamycin and cisplatin), his white cell counts dropped to a 0.3 (normal is 9.0 - 10.0) so the oncologists conferred with the surgeon and decided to put off the surgery until his counts come up to a more normal number (he's a 0.5 as of today).

This doesn't make Seth's time any easier - He has some pretty bad mouth and throat sores (from the chemo & low counts) and he's trying as best he can to get through the pain from these (morphine helps but not for all of it).

Many folks have been visiting Seth (mostly relatives) and he has been especially fond of having his neice Arielle (also being treated for cancer) come up and play with him. Some friends have stopped by since my last post (thanks Jen) but he needs to see more of you soon! (OK - Guilt trip over).

I'll add another post here Sunday or Monday night, when we know when surgery will take place. In the meanwhile, ever onward!

Update on April 5, 2000
OK - D-Day. Seth will be going in for surgery at around 7:00 AM tomorrow morning. He is getting: Tumor Resection, Hemi-Pelvectomy (removing left half of his pelvis), Pelvic Alograft (Bone bank replacement of the bone they remove), Non-dislocating polycarbonate hip joint (total hip replacement). The doctors tell me that Seth will be in surgery for around six or seven hours (maybe more).

Please remember to keep Seth in your prayers at this crucial time. Below are some great shots we took today.
(Now viewable on Seth's Photo's Page)

Update on April 8, 2000
OPERATION WAS A GREAT SUCCESS! Ok - Now for the details - Seth was wheeled (by me) into the operating room at 9:30 AM on Thursday. The operation took 14 hours and Seth required 16 units of whole blood during the operation. At a little after 11:30 PM they wheeled Seth up to the Intensive Care Unit and gave us all the news. Seth's operation had gone right by the book except for the doctors (team of three orthopedic surgeons. two anesthesiolgists and three nurses) taking some extra time to make sure that all went well. Dr. Francis Lee lead the team of orthopedists who removed his hip and left pelvis and then reconstructed them in a grueling marathon. As was explained to us, Seth came through with flying colors and though they had to remove a good deal tissue (muscle included), Seth has feeling in and movement of his leg and foot. Dr. Lee said we shouldn't let the insurance company know how well this went (and his recovery is progressing) for fear they will think all operations of this kind go so well.

Thank God for all he and the medical team have done so far. The ICU nurses are wonderful and the entire medical staff was been noting less than fantastic. We got a great laugh yesterday when Dr. Julia Glade-Bender, one of the staff oncologists at CP, was examining Seth's incision (a huge T-shaped wound) when Seth asked "Why are you looking at my genitalia?" What an amazing kid - through all of this (and the morphine haze) he still has his sense of humor.

Some of the more humorous moments came when after my ex-wife told him she loved him, he whispered back "I love you too, Delta Flyer". He also asked to see the doctor from Voyager - too much Star Trek on the mind! Seth is eating and drinking but is still up in ICU (I write this from the first pit stop at home in three days - we're going right back). They hope to have him in a regular room by tonight or tomorrow. Anyway - back to the front. Please keep Seth (and Arielle too) in your prayers as they continue on the path to beating this monster fully!

Update on May 10, 2000
Sorry it's been so long since the last update - it's been a little hectic between Seth's needs, rest of family's needs, not to mention work and other commitments. Anyway, Seth is just finishing up his 7th round of chemo (2nd since the surgery) and seems to be doing very well. He is ecstatic about being cancer free (not totally accurate but I'll let him call it what he wants) and is working hard at getting himself mobile again.

Seth has spent the last month working hard (with a little prodding) at regaining the strength in his legs (he has spent most of the last six months in bed!) and has started walking (using a walker) and putting weight on his left leg. Next week Seth has another round of Ifosfamide scheduled and he is scheduled to come home in less than two weeks. Before he can come home he needs to be able to negotiate the stairs in our house (up & down) so he has some tough work in front of him.

Update on June 6, 2000
Seth just went back into the hospital for round 9 (Methatrexate). He spent the prior two weeks at home and according to his orthopedic surgeon is recovering the best he's ever seen after an operation of this magnitude. He told us Seth needs to slow down a little - It's only two months since his surgery and he's putting too much weight on the leg already (two pins have started to come out - just a little - because of how much Seth is doing). We were told it's going to take another four months before the new pelvis fuses with his own so he needs to take it slow until then.

Seth also has hair that started to come back after the surgery, and is now a light brown in color (as opposed to his old dark brown) and is very fine (used to be coarse). It's about a quarter of an inch long right now, and will probably fall out before he's done with the next 15 rounds of chemo, but it makes me remember what he looked like before all this started. Just seeing this lets me know (in some odd way) that we will get through this and life will return to normal at some point.

To all of his friends out there - please call him or come visit while he's in the hospital - he could really use your encouragement and company at this time. If all goes well, he should be able to come home Friday before he goes in for another round of Methatrexate next Monday (so he can go to Arielle's birthday party this weekend).

Update on June 20, 2000
Seth is in for round 11 now - Adriamycin and Cisplatin. He went in yesterday and is having a real tough time of it. I got to the hospital around 8:30 PM to find him throwing up. He proceeded to throw up eight more times between then and 10:00 PM when he finally fell asleep. He hasn't been able to eat or drink much so after the first time, all he got up was bile. To top things off, after each time, he would get chills and start to shiver uncontrollably, even though the room was 78 degrees and he was under his quilt. They wound up giving him Zofran, two doses of Benedryl & Reglan, Compazine and Atavan before he finally stopped. Just a real bad time. Please remember to keep Seth in your prayers this week. Thanks.

Update on July 2, 2000
Seth devloped a low-grade fever on Friday and had to go back into the hospital (anything over 100.5 and it's an automatic). He was very unhappy about this but we expect him to be coming back home today. He sees Dr. Lee on July 10 and starts round 12 on July 11 (the halfway point).

While in the hospital, Seth loves to surf around and email with others (see picture below). You can email him at seth@birdcat.com.
(Now viewable on Seth's Photo's Page)

Update on July 6, 2000
It was determined that the cause of Seth's fever (and many other prior problems) was an infection in Seth's broviac line. We knew that the next time this happened, it would be removed. Seth was not very happy about this but on Monday night (7/3), the surgery went forward and they removed the line. The surgeon (Dr. Gilchrist - the same one who did my grand-daughter Arielle's first surgery) let us know that he found a pocket of pus around the line and cleaned it all out. This was relatively good news in that now we knew why Seth had been running low grade fevers and why his lines were always infected. It also meant that there was a good chance that the infection was not in his pelvic area.

Seth (and the rest of the family) was able to get out to enjoy the magnificent fireworks display on July 4th. We parked in a municipal lot that had a great view (right in front of two of the fireworks barges) from the comforts of our vehicle. New York (read Macy's) put on a really impressive show that night with fireworks in the shapes of smiley faces, hearts, spelling out the name MACYS, as well as some really high tech and brand new designs.

Yesterday, we found out that Seth has a yeast infection in his blood. It's not a very serious one and we are treating it with antibiotics at home. Seth also had a CT scan and they found some fluid around the site of his pevlic transplant. We were told this also was not a big problem and we will be discussing it with Dr. Lee (orthopedic surgeon) when we see him next week. These infections are not slowing Seth however. Yesterday he was feeling and doing quite well - He even had some friends come over and visit for a while. His friend Nick gave him a really nice cape/cloak and he has been wearing it non-stop. Arielle also came to visit yesterday (her hair has started to come in quite nicely) and she decided that Seth needed some hair and drew some on his head and gave him a beard as well! Overall - a real roller-coaster of a week!

Update on August 11, 2000
A great deal has happened since my last update. Seth accidentally partially pulled out the second broviac right after his 14th round of chemo. He had to finish up his hydration with a peripheral line in his arm. Dr. Gilchrist removed it last Saturday, after all infusions were complete. He was scheduled to get a metaport (a port, under the skin, feeding into a major vein) on August 16.

This has been put on hold right now because on Wednesday night, Seth had a 104.5 fever and we brought him back to the hospital. As of last night, his room was set up as an ICU and he has a nurse monitoring him round the clock. His blood pressure fell to 64/28 and his pulse has been racing at over 200. He has been getting GCSF (to make his white cells increase), three different antibiotics, an anti-fungal, Tylenol, fluids, whole blood, platelets and albumin and still his fever refuses to break. As of this morning, his temperature was still at 101.2 and his counts were still very low. Dr. Graziano feels that his white cells are too low to pinpoint where the infection is and that once they come up, we will see an inflamation at the site of infection - Right now they are thinking either the surgery site (hip/pelvis) or the big toe on his left foot (which looks very red). If his fever doesn't break soon, they feel that bacterial infection can be ruled out (making it a viral one) and they will stop the ant ibiotics and just keep fighting the effects.

This is a tough time for Seth and the rest of the family and we would appreciate any and all prayers you can offer up for him. I will update this page as soon as I know more.

Update on August 16, 2000
There is good news and bad news. The good news is that Seth's fever has broken and his blood pressure has come back up. As of today, his white counts were over 8.0.

The bad news is that there has been a major complication. Seth has developed a crater (I don't know what else to call it) at the site of his surgery (pelvis/hip). There is a hole about one to one and a half inches in diameter on the front of his hip that is draining large quantities of fluid. The bone is visible through the hole! - They estimate it is about four inches deep. He has been transported up to Columbia-Presbyterian where tomorrow Dr. Lee (orthopedic surgeon) will open him up once more to find out what the problem is, clean out the wound and close him up with drains in place.

To further complicate things, Seth's weight has dropped to 169 and has very little extra flesh, fat, skin to close over this so we might wind up with a large hole that will need to be cleaned and dressed multiple times a day for a few months (if we're lucky and he doesn't wind up losing the leg because of this!).

The surgery can happen at any time tomorrow (he is not going in at a scheduled time but is being seen as an emergency case). I will update this page this weekend (or possibly earlier) when I can get back to it.

Update on August 18, 2000
The operation went very well. Dr. Lee told us that everything looked fine and he cleaned out the area, put two drains in (which were working quite well as of last night), and closed up the wound. Now if Seth can just keep his legs bent (to keep the skin in the area from being puled taught) and keep from touching the area! His pain is being managed quite well (morphine again) and when I spoke to the nurses station this morning I was informed that he slept quite well.

I'll update this page sometime in the next week and let you all know how the battle goes. Thanks for all the prayers!

Update on October 30, 2000
I know it's been a while since I updated this page so here's lots of information - condensed down to a readable size.

First and foremost, I would like to thank Jim & Pat Hay for a wonderful gift they sent to Seth. As most of you know, Seth is really into medieval things, swords, chain mail (Seth and his brother Jeremy make their own), costumes and the like. A couple of months back, we noticed on eBay, a couple who made leather bracer's - these looked to be really nice (I just started doing leatherwork and you can really see the quality of these) and I bid on a pair. Needless to say, I was outbid on these as well as subsequent pairs offered up. After noticing that these were being auctioned off one pair at a time, I contacted the sellers to see if, due to our special circumstances, they would be willing to sell us a pair, rather than going through the bidding process and getting outbid all the time. Long story short, this wonderful couple sent Seth a pair as a Gift! You can see from the photo's below just how nice they are and how much Seth likes them. If you'd care to bid on a pair yourself, Jim and Pat keep them on eBay (one pair at a time) - you can see their current offering by clicking here.

For the medical news, Seth has finished up round 18 (of 24) and starts round 19 on Thursday, 11/2. He has had some problems with getting very tired and not being able to catch his breath after only minor exursion, so he goes to the cardiologist on Wednesday for another echo-cardiogram and heart checkup. Please keep Seth in your prayers for this one.

Seth also has developed a vision problem in one of his eyes. Due to the low platelet counts he often experiences after chemo, one of the blood vessels in his eye leaked and now he has a dark area blocking some of the vision in one eye. The opthamologist thinks this will be reabsorbed in a couple of months so we are hoping for this easy cure. If it doesn't get reabsorbed, the options are either laser surgery or to live with it. We'll let you know what happens when we get to that bridge.

Anyway, now for the photo's...
(Now viewable on Seth's Photo's Page)

Update on November 21, 2000
It's only been a few weeks since my last update but much has happened since then. Seth has completed his 19th (of 24) rounds of chemo. Ten days after his 19th round of chemo, Seth developed another septic (systemwide, blood based) infection. This is where his fever rises (104.9 at it's peak), blood pressure drops (to around 100/35), heart races (to around) and he is in very grave danger.

His body does not have the means to fight off any infections due to two factors. One - the drop in his white blood cells (they dropped to 0.0 this time - a first) and even the nupagen (GCSF) took a very long time to start to bring them back up (they were at 1.3 on Sunday - they need to get to 10.0).

This is all complicated by the second factor - the drop in Seth's weight. He now weighs around 150 pounds (down from 204 when he started this). It seems that due to Seth's refusal to eat much of anything he's supposed to, his body has started feeding upon itself for the energy it needs to run. It has taken a great deal from his muscles, and according to his oncologist, is at the point of taking from his internal organs. It has also put his leg in jeopardy as the surgical incision has started to break down again, and if the site gets infected once more, the leg will come off.

We are waiting to see just how to move forward, because we were told that Seth will NOT survive another septic infection like he just had (this was his second). He has refused to allow a feeding tube to be put down his throat (he fought off eight people trying to do that) and has only been eating about 500-600 calories a day worth of food. He is getting TPN (IV nutrition) with lipids but that only adds about 1500 calories per day. He needs about 3000 calories per day to build his body back up to the point where he can heal and recover.

He has gotten over the infection and seems in good spirits, but he is fighting off every attempt to get massive quantities of food in him. He'll eat foods he's not supposed to (sushi, lobster, raw vegetables) or foods with no or low calories (pickles) but trying to get high calorie, nutritious food in him is a constant battle. Another problem is well meaning friends and family who empower Seth to refuse to get better by making excuses for him.

Seth (as well as the world at large) needs to realize that the only thing that will get Seth through this is Seth doing what he needs to do. If he doesn't, he will die. At the very beginning of this ordeal (back in January) I had a talk with Seth and explained that he needed to view personal hygiene and food as a part of his treatments. I would do my job (support, running around, getting the best doctors I could) and that his job would be to do all he could to get better - even when he didn't feel like it. He needs to keep up his end of the deal. For those of you who know Seth personally (his friends), please give him a call and encourage him to eat the right things and fight the good fight.

I'll let everyone know just what steps are next when I do. We are in limbo right now as to when round 20 will come up. More information will be available sometime next week. All have a happy Thanksgiving.

Update on January 12, 2001
It's amazing how much can happen and in such a short time. It's only been about nine weeks since the last update but much has happened. First off, it's good news! Seth started to eat properly (or a vague approximation thereof) about a week after the last post. He started to gain weight, as well as look and feel better almost immediately.

He's now up to about 168 (from a low of about 150) and eats well on a daily basis. He still chooses one or two foods and eats only those until he gets sick of them. Right now it's Burger King chicken sandwiches (four to five a day) and bagels with cream cheese (one or two a day) but at least he's getting the nutrition he needs. He supplements with soft drinks (orange soda right now) so that adds the additional calories.

Even more good news is that there is only one more round of chemotherapy left! Seth finished up round 23 today and is already home! No more cisplatin, methatrexate or adriamycin. Just one more ifosfamide to go and that's it! He should start the next and final round in about two weeks! Needless to say, he's hopping!

Seth also got his Make-A-Wish gift (what a wonderful group of folks!). He wanted a state-of-the-art laptop computer and they came through in spades! He got an IBM T20 with a fast Pentium III processor, 128MB RAM, 9 gig hard drive and killer 14.7 inch active matrix screen with a killer video card! You can even read it at a 45 degree angle! He also got it with a universal drive that lets him swap between a floppy drive and CD/DVD player. They even included a cellular modem so if he gets service, he can go mobile and surf! It's a better machine than I have either at work or home!

We go to see the orthopedist in a couple of weeks and Seth will astound him. He's walking great and has healed up wonderfully! We're planning a nice vacation during the summer to celebrate (probably a cruise) and I told Seth he can tell everyone the huge scar is from a shark bite!

Now that Seth has his own computer, you can email him directly at seth@birdcat.com. I'll have some new pictures up in a few weeks.

Update on February 12, 2001
Just a quick photo - Here's Seth waiting at the hospital for his new neice to be born. You can see Rebecca Sharon at Arielle's page.
(Now viewable on Seth's Photo's Page)

Update on March 11, 2001
Seth is doing quite well and started back at school last week. He's up to 185 and is eating like a little piggy! We got a little carried away this weekend and attacked Seth's head with an Easter egg kit. What do you all think??
(Now viewable on Seth's Photo's Page)

Update on June 15, 2001
Well - Seth is very much getting on with his life. Below are some photo's of Seth getting some awards prior to graduation (coming up on June 25). He's certainly doing much better lately (thank God!). Also, I have included some photo's of Seth from his Prom last week (with his date Kristina - I think I spelled that right - and some others he shared the limo with).
(Now viewable on Seth's Photo's Page)

Update on July 7, 2001
OK - Here are the photos from Seth's graduation!
(Now viewable on Seth's Photo's Page)

Update on October 2, 2001
For those who may not know, many things have transpired in the last eight weeks. Firstly, Seth decided he wanted to move to Florida to live with his grandparents and attend college there, so in early August, he moved to Boca Raton (don't ask what a headache it was to get his medical coverage switched there!). Just after moving out, he developed another infection in his hip so he went to see a new group of doctors in Florida to help with this.

In September, the hip grew like there was a large hematoma in his butt (what the doctors originally thought) and he was scheduled for surgery to clean out the infection and drain the hematoma last week. On Monday, Sept. 24 they removed 300cc's (10 fluid ounces) of bloody fluid from the area but this just fulled up again. On the following Wednesday, the surgeon (musculoskeletal oncologist) went in to asses the situation, clean out the hip, etc... and was surpised to find a recurrence of osteosarcoma, with total involvement of Seth's gluteus maximus (butt) muscle. Thank God, further scans revealed that the recurrence was localized (no involvement of sacral spine, other organs, lungs, etc...). Needless to say, we were on the first plane we could get down there (what a pain due to new flying restrictions - we couldn't fly out that night!).

We got back early Monday morning. Now starts the work getting proper treatment for this. Due to the recurrence and Seth's chronic infections in the site of the original reconstruction, both Dr. Lee (the doctor who performed the original surgery) and Dr. Temple (current ortho-onco) are sure that the leg must come off. As was explained to me by Dr. Temple on Saturday, they will remove the left pelvis (allograft) along with all hardware (which Seth asked to keep) and the leg itself, leaving a flap of healthy muscle and skin along the front of the leg which will be folded up to build up an area (sort of like a small butt cheek) for a prosthesis to rest on. I was surprised to find out that Seth will be able to get a prosthesis that will be able to bear a small amount of weight, thereby giving him some degree of mobility (depending on how hard he works during physical therapy) and a better cosmetic appearance.

Seth's pain level is for the most part under control, and he is now wearing a fentonyl (spelling?) patch and taking various oral and IM meds for breakthrough pain (dilaudid, morphine, tylenol 4, etc...). Seth was released from the hospital Monday.

The current consensus (I will be verifying this with his onco team this week) is for Seth to receive some more chemo for a few (four-six) weeks before taking the leg. I have spoken to a couple of doctors about this and will continue to insert myself into discussions of what agents to try next. (I've been insisting on c-kit testing for possible Gleevec use, as well as pushing GM-CSF, MEPACT and others). Seth has maxed out on Adriamycin (Doxirubicin), Cisplatin and Ifosfamide) but we are looking into VP16 (Etopiside) and Topotecan as far as traditional agents are concerned. I have also broached the subject of tetrathoimolybdate for reducing serum copper (Dr. Folkman's work). Also, Herceptin (monoclonal antibodies) looks promising as well.

Our plan is to work with the doctors (making sure that Seth is heavily involved in the decisions) in coming up with a treatment plan (via telephone) and we will head back down to Florida when the surgery is scheduled. I was told that I would know about a week in advance when they will do the surgery.

Seth is being treated at the University of Miami Medical Center (had the current stuff at Cedars but will be moved to one of the other hospitals for the chemo and future surgery). The local oncologist (Dr. Cohen) is bringing in Dr. Benedetto (adult osteo expert) and/or Dr. Toledano (pediatric osteo expert) from the Sylvester Cancer Center to consult. I have also involved Seth's medical team from New York (Dr. Graziano, Dr. Granowetter, Dr. Glade-Bender and Dr. Lee) for any information they can offer.

There are many, many things happening and they are all happening very fast. Things can and do change often and with little or no advance warning. I will try to keep this page updated as soon as I know and am able to do so.

Update on October 12, 2001
OK - We have some news. Seth will be starting chemo early next week. Dr. Benedetto is his oncologist at this point. He will be getting Cisplatin intra-arterial (Doc said this would send chemo more directly to the site, giving it a fourfold increase in exposure) and Adriamycin IV (through his metaport). He plans on doing two rounds of the combination and having Dr. Temple do the surgery.

Seth will be getting all this done in-patient at the Sylvester Cancer Center, but we still haven't decided where he will go when his counts drop (Seth goes neutropenic every time he gets chemo). They ran a c-kit test which came back negative, so that leaves out the possiblity of Gleevec here. I asked if they could also run tests for Her2/neu to see whether Herceptin might be of use.

I'll update this page when Seth has finished the next round.

Update on October 18, 2001
Another Delay - Seth went into the hospital on Monday, 10/15 to get ready for the chemo that was to start on Tuesday. They hooked him up on PCA (IV Morphine), got him hydrated and at around noon on Tuesday, brought him down to where they were going to give him the angiogram (to give the chemo IA) but even though Seth had asked repeatedly about what would be necessary, no one told him until he got there that he would be required to lie absolutely still for the four hour chemo drip as well as the six hours following it (for a total of ten hours of lying still). Considering the muscle spams that Seth gets, as well as the general discomfort he is in (due to the enormous tumor in his butt), this is not something Seth can do. On top of that, they did not even have Zinecard (the medicine that protects his heart when getting Adriamycin) in the hospital and told us they could not even get it for at least a week!

Needless to say, we were furious. Firstly that they have delayed Seth's treatments so long (and will continue to do so - he is scheduled for next Wednesday as of now) and secondly that they would even admit him to the hospital when they did not have even a remote chance of getting the medicine he needs! To top this all off, they didn't even tell us what was going on until 5:30 PM on Tuesday!

Something you don't want to do is make me mad (just ask my kids). I proceeded to get the name of the Medical Director (for the entire University of Miami Medical Center), got his home telephone number (isn't the internet a wonderful thing), and called him at home during dinner (telemarketers beware!). He was able to give me the name of the person who could possibly help in this matter (Chief of Hematology/Oncology) who I did speak with on Wednesday morning. He is new there so I will give him the benefit of the doubt when he told me that it was problems like these that he was hired to alleviate. He spoke with me for about twenty minutes and persuaded me to wait until next week (when Seth's oncologist returns from a trip) and then proceed with the original plan. He explained that he had called Upjohn (the maker of Zinecard) to see if they could expedite getting some at the hospital and he would be instructing the fellow (who was left in charge of Seth) and the attending to get the special room and doctors they will be needing to run this protocol (they will be knocking Seth out so he can lay still for the ten hours).

Update on October 26, 2001
OK - Seth has started getting his first round of chemo for the recurrence. On Tuesday, he was admitted and on Wednesday morning he was supposed to go down to get the angiogram. At around 10:00 AM they came to bring him down but due to delays at the hospital, the procedure was not started until well after 3:00 PM! They finally brought him back to his room at around 7:00 PM. We were concerned about Seth being able to lay perfectly still for the eight hours he needed to (from the angiogram - four hours of chemo through it and four hours after removal) but this time the doctor told us there wouldn't be any danger to Seth from moving during sleep (when all the chemo would be done). I was concerned due to what we were told the week before but he was adament there was nothing to be concerned about. They started running the chemo that night and Seth got through it fine (he wasn't even nauseous on Thursday morning when I spoke with him.

Seth is supposed to be released today (Friday) after getting the chemo later this afternoon. I am still concerned as this doesn't give them any time to flush his system with fluids IV, but for some reason they think this is fine (all his previous 24 rounds required one full day of IV flush at very least). We'll see - I'll post more next week when his counts should start to drop.

Update on November 6, 2001
Seth got through the chemo ok - His counts started dropping last week as expected. Yesterday, he developed a very large bruise where he got the angiogram (IA chemo). We tried contacting the doctors at Jackson Memorial but all I got were busy signals and when Seth's grandparents tried to call, they got the message that Dr. Benedetto was not there that day (Monday) and they couldn't even find out who was covering! They contacted Seth's primary care physician who had them bring Seth in to the local (user friendly) hospital. It was determined that since his counts were so low (WBC: 0.4, RBC: 2.86 and platelets: 5) this was probably the cause of the bruise. It was planned for Seth to come in today to get platelets and packed red cells.

Then, last night, Seth's temperature started to rise - 100.7 at around 11:00 PM. Once again, Seth's primary care physician was contacted (because his primary onco was unreachable with no one covering) and he arranged for Seth to be brought into the hospital for the transfusions, fluids and antibitotics to fight the infection giving him the low grade fever.

When I spoke to his nurse early this morning, he had already started the packed cells, and they were planning out his treatments for the rest of the day (Vancomycin and other antibiotics, platelets, etc...). His fever had also come down to 98.7 (he is a low normal - around 97.6) so this is good.

Update on November 19, 2001
OK - Seth has finished up all the chemo he will get before the surgery. The date for that surgery has been set - December 14, 2001. I will be flying down to Florida the day before and staying with Seth until the following Tuesday, when I need to fly back home to NY. Stephen, Seth's younger brother is planning to visit again sometime next February.

Seth will need all of your good thoughts and prayers in these few weeks before such a major surgery. They will be removing the left leg and left half of his pelvis (with no reconstruction this time). Seth will need some time to heal and then look to the daunting task of rehab and additional chemotherapy for the following six months.

I spoke to Seth today and he is doing about as well as can be expected, but this is very hard on him and he is scared. He is home (with grandparents) right now and for his friends out there - I'm sure he could really use a phone call! We are trying to get him in touch with a local amputee support group (in Boca Raton, where he lives) and he has finally agreed to speak to someone about his fears, hopes, concerns, etc...

I don't know how much more I'll be able to post here before the surgery, but I will make sure to put at least one more update before I fly down. After the surgery, I will try to get an update here as soon as possible but don't expect anything until at least December 20 or so.

Update on December 12, 2001
Good news is that the chemo was quite successful. Seth's CT scans (chest, pelvis and abdomen) all came back clear. According to the doctor, the tumor looks like a "soft, necrotic blob" and he believes there is a very high necrosis rate (amount of tumor that is dead). He also told me that the lungs and everything else were clear, and since the bone scans were negative when this all started in late September, he feels that there are no other metastases.

Surgery is scheduled for 6:00 AM on Friday. We have been told that this is an easy surgery (they aren't reconstructing anything so...). Hopefully should only take about three hours. Seth will be getting an epidural along with being knocked out to help with pain management.

I'll be flying down there on Thursday to be with Seth for the right before, during and after this operation. I don't know if I'll have internet access, but if I do, I'll try to post a follow-up this weekend to let all know how everything went.

Please keep Seth in your thoughts and prayers this Friday, as he goes through this radical, life changing surgery.

Update on December 19, 2001
OK - Surgery is over. According to the doctor (Dr. H. Thomas Temple), it went better than expected. The leg, tumor and all, was removed with "wide, clear margins" meaning that the tumor was fully encapsulated by healthy tissue when removed. The preliminary pathology also came back with good results - all the lymph nodes which were removed were all clear - no disease. The doctor was able to leave a large, thick flap of muscle from the front of the thigh, which had many intact blood vessels.

Seth had a rocky weekend - going in and out of consiousness - but starting on Monday, was awake and alert most of the time. He is in some pain, but that lessens each day (thank God for morphine). Seth's psychological outlook is also far better than mine would be. He has accepted what was necessary and is moving on with his life. He has come through this in a way that makes me very proud to be his father.

More good news - Today, Seth not only stood up, but took a few steps with the aid of a walker. Right now, the plan is to get him into rehab by next Friday or Monday. He will also be starting chemo again in about three weeks.

I'm sorry this entry is so short - I'll try to put together a detailed commentary in the next few days - Just right now I am still physically and emotionally drained. Thanks to all of you for your kinds thoughts, words and prayers as they mean so much to us. Seth would love to hear from his friends - You can email him at seth@birdcat.com or email me at webmaster@birdcat.com and I'll send you the current phone number for him.

Update on June 14, 2002
It has been about half a year since my last update - Seth was doing quite well and adjusting to the changes that have taken place in his life.

Yesterday, during his quarterly checkup, a 10mm tumor was discovered in one of his lungs. While this is obviously a setback (both physically and emotionally), when I spoke to his oncologist, I was told that a single, pulmonary nodule does not really affect his prognosis. Thank God for small things.

Seth will be speaking with thoracic surgeon today to schedule a thoracotomy - This is a surgical procudure where they will go in to Seth's lungs and surgically remove the nodule along with some healthy tissue surrounding it (margins). When I know what day the surgery will take place, I will update this site with that information.

In the meantime, please keep Seth in your thoughts & prayers as he goes through this very rough spot on his road to recovery.

Update on June 20, 2002
Ok - We have a date. Seth will be going in for surgery on Friday, June 28. Seth has a very small (10mm) nodule in the upper part of his right lung.

I spoke to the surgeon and he will be attempting first a thorcoscopy, where he will make three small incisions (one for the drainage tube, one for the camera/light and one for the cutting tool) and trying to get it that way. This is a much less invasive operation and has a recovery time of about three weeks.

If he finds the tumor elusive or has any other problems, the surgeon will simply enlarge the incisions and change on-the-fly to a thorocotomy, a more invasive procedure where the tumor is resected in a more traditional (read line of sight) method. The recovery from this surgery takes a few weeks longer.

As of now, this still should not affect Seth being able to go back to college next semester (starts late August). We are also preparing to put Seth on Mepact (MTP-PE), an experimental chemo agent which helps specifically with lung involvement. Hopefully (please God), this will all be the last of these recurrences.

Update on July 3, 2002
Seth is home from his surgery. They performed a thoracotomy on him last Friday with a wedge resection, removing about a three inch slice of his right lung. According to the surgeon, everything left looked clean and clear but we are still waiting for the pathology results. The surgery was supposed to take about three hours but the doctor came out after about an hour and a half and told us all had gone well.

We now wil be trying to get Seth onto some chemotherapy and will just take one step at a time. Seth is still in some pain but has been feeling better more and more each day. I will be posting a more detailed account of this later but suffice it to say this hospital visit was normal for us, that is to say full of problems with staff.

I'll post more in a few days. In the meanwhile, everyone have a great Fourth (read happy, healthy and safe).

Update on November 18, 2003
I'm sorry to be so remiss in keeping this site up to date. As of today, Seth is doing well. He has fully recovered from the thoracotomy and is attending college (he wants to go into computer security).

The latest complication (read scare here) is that on Seth's last set of quarterly CT scans, they found something so they sent him for an MRI. That was inconclusive as well so they had him get a PET scan (much more reliable for showing cancerous cell activity). When his local oncologist got the radiologist's report, we were told that Seth had a local recurrence and it was very bad because they felt it was inoperable due to being located behind the bladder. The oncologist felt he could get the tumor with radiation but told us that this meant that the cancer would keep on coming back until there was nothing they could do. He would not give us a time period but he acknowledged it was bad. Seth then made an appointment with the surgeon who performed his hemi-pelvectomy to see what Dr. Temple had to say.

When Dr. Temple saw the scans (he has seen many osteosarcoma cases over the years) he told us that he thought this was not a tumor but a cyst (which runs in my family - me, my oldest son, both my parents, my uncle, lots more) which was music to our ears. He sent the scans off to his own hospital's radiologist to be read as well as sending copies to the Mayo Clinic for their staff to take a look at. We have not heard back from anyone as of yet but Seth has another appointment with his local oncologist on November 26, at which point we should know more. The other "not horrible" news is that even if this should be disovered to be a tumor, Dr. Temple feels he can get it out surgically, so I am pleased with that.

I will try to keep this page somewhat current, but please forgive me if it goes a few months between updates now.

Update on January 5, 2004
Very good news. Seth's latest scans have proven Dr. Temple to be correct. The mass has not grown and is therefore not a tumor. We are still unsure what it is but there is time to figure that out. In the meanwhile, it is not life threatening or even noticeable in any way to Seth.

I can breathe again. Thanks to all for your continued prayers.

Update on February 3, 2005
Hello everyone - I know it has been a very long time since I have updated this site but as they say, no news is good news. Seth continues to do very well - He has just finished up his associates degree in computers and is continuing on for his BS in computer science. He is driving his own car (well, what some folks might call a car - I call it a jalopy), living on his own with his brother, doing things that any other normal 21 year old would do. This past winter he went on vacation where he did snow tubing and had a blast! On the down side he is also going overboard with the tattoo/piercing thing but it's his body to do with as he pleases so I cannot say too much about it. I will put some new photos up in the photos page here so all can see how he's doing.

It may be a while (I pray) before I update this site again, but please feel free to contact me at webmaster@birdcat.com if you have any questions.

Update on March 1, 2006
Much has happened recently - In August a small (4-5mm) nodule was discovered in Seth's left lung. They were unsure what it was so it was decided to wait for six-eight weeks and rescan. When the second set of scans were run, it came back as stable - NO growth - This was great news as we took it to mean something other than a metasases. In January when another set of scans were run, it had grown to 1.3cm - three times the size! A surgery was scheduled for early February (between waiting for doctors, and surgeons, and radiology reports!).

On Friday, February 3 Seth went in for surgery to remove the tumor. Since it was on the outside of his left lung, they were able to do a Thorascopy (rather than a Thoracotomy which is what he had last time). This is minimally invasive surgery where they use equipment like orthascopic surgery on the knee, except they go into the chest cavity. This was much easier on Seth and they got everything out with clean margins. Seth's recovery was so good he was back in classes the following Wednesday!

Seth has some pain now but that is normal - So we reset the five-year clock back to zero and start counting again!

Update on May 8, 2006
There is both bad and good news. After Seth had the surgery to remove the lung met back in February, it seems a few more have grown - Five to be exact - and three are near the heart with the other two next to the chest wall (pleura). It was felt by all medical folks I spoke with (Dr. Gomolin - Seth's current oncologist, Dr. Thurer - The thoracic surgeon, Dr. Linda Granowetter - Seth's main oncologist at Columbia-Presbyterian while he was there and a leading Sarcoma expert, and Dr. Joan Graziano - Seth's local oncologist when he was on Staten Island) felt it prudent to start some more chemo before attempting to remove the new tumors.

After speaking with all the oncologists, it was felt that it was best to try a new protocol of Gemcitabine and Docetaxel. These drugs are not as harsh as the ones Seth has had before so he will drive himself once a week to the hospital where he will get them outpatient. It will also be mimicing a clincal trial running at Columbia-Presbyterian for recurrent sarcoma so we'll see how this works for now. We will try this for two months and rescan (I am trying to get scans after one month to check for growth - we'll see how that floats). If the Gem/Tax doesn't seem to be working, we will probably go with some more Ifosfamide, which is a stronger but harder to tolerate agent.

There are a few more things we can try but we are really hoping this does the trick - Due to the location of these tumors it is very serious so please keep Seth in your thoughts and prayers. Dr. Joan thought some type of monoclonal antibdy might be useful and I will be looking into that - If anyone has any thoughts on possible treatments (conventional please - no alternative as of right now or wacky stuff that would be warned against on QuackWatch.com) I would welcome suggestions.

Update on June 5, 2006
OK - Seth has had two rounds of the Gem/Tax - He has tolerated it OK (not great, not horrible). The first time they tried it, Seth had a bad allergic reaction to it - They tried it again the following week but first premedicating with steroids (Decadron) and running benedryl along with with it just before chemo.

After the second round, Seth felt really horrible after a couple of days and was admitted to the hospital after days of severe diarreah - They eventually found blood in his stool and urine and white cells in his stool - They attributed the weakness and lightneadedness to dehydration, the blood in the stool to low platelet count and the white cells to an infection somewhere in his GI tract. He felt fine after a few days (IV hydration does wonders) and sent him home after a unit of platelets, some IV antibiotics (he was sent home with oral version of that) and he is feeling fine now.

The plan for the Gem/Tax is two weeks on, a week off, two weeks on, a week off followed by two weeks on - Then we will rescan and see how the tumors in the lungs have reacted. Although his oncologist feels that surgery is not the path to take, the surgeon feels these are resectable and with sarcoma I know it is best to get it out if at all possible, but I will look to other medical opinions before we have to make that decision (it also depends on the tumors' reaction to the chemo).

So for now, we just battle on - Seth is doing pretty well considering - He is also not used to being treated as an adult - In chemo's past he was seen as a pediatric patient - Now that he's 23 they don't quite treat you the same - He has been getting the chemo as an outpatient and just driving home afterward - A far cry from the week(s) long hospital stays for the same thing just a few years ago.

Update on July 27, 2006
There is bad news and there is other news.

The bad news is that these last three rounds of chemo (Gem/Tax) have not done anything and there are multiple tumors now in the lungs. Originally we were told "innumerable" and on both lungs, but it according to Seth's oncologist, they are NOT innumerable but they have grown and increased in number, as well as being in both lungs now. The three that were near the heart have grown together and are starting to wrap around the heart.

We will be leaving Florida on Saturday to go back up to NY so Seth can (hopefully) get into a clinical trial being run for inhaled cisplatin (a chemo agent Seth has had IV before). The good part about that is that it is specifically for osteosarcoma mets to the lungs and as long as the tumors are localized there, Seth should be able to get into the trial - It is a Phase 1B/IIA trial meaning that toxicity levels have been tested but it is also a double blind so he may not get the "good stuff" although I certainly pray for it to be so.

The trial runs for four rounds every other week (as far as I know now) so we should have some news in a couple of months.

Update on August 10, 2006

Ok - Seth was accepted into the trial and as of yesterday has received his first round of inhaled cisplatin. Quickly - Everything went well and below is information about the trial and a quick summary of our experience thus far.

This trial is NOT a double blind study. Everyone accepted into it will get the cisplatin (no placebo). It is also an "open-ended" trial meaning there are no set protocols for length - As long as the chemo is doing some good, you can continue on it. It is given every two weeks with scans overy other treatment to ascertain progress. The treatment lasts from 1-2 hours (dose dependant which is dependant on patient size) and has very few side effects. More info about all this will be continued in our experience further down.

A brief recap of the past couple of weeks for us:

We had our appointment on Monday, July 31 with the onco staff at Montefiore Hospital (trial is being run by Dr. Richard Gorlick at the Albert Einstein College of Medicine) in the Bronx. I must say how wonderful each and every one of them are! We acutally met with Joan O'Hanlon Curry (administrative nurse manager) and Dr. Bell (one of Dr. Gorlick's associates). We had all our questions answered and they got all the information they needed form us in a very painless and pleasant morning. (Really, I could not compliement these folks any more highly as to their professional but extraordinary caring manner - everyone - from the doctors to the receptionist). A battery of tests was set up for just about every day that week.

We had a scare on Tuesday dealing with the bone scan - The tech needed to get some extra pictures due to some "increased uptake" showing up on Seth's ribs (a metastases there would render Seth ineligible for the trial) but this came back negative so there was not a problem. Seth also had other tests to determine if the lung tumors were situated in places that would be able to get the chemo, and they are. They also ran a hearing test, pulmonary function test - in all he had about a half dozen that week.

On Wednesday, we showed up and it took a couple of hours for check in, vitals (height, weight, BP, temp, etc...), release signing, Q&A and prep. About 11:00 we were brought to a closed room that Seth would be getting the treatmemt in. He was changed into two hospital gowns, a sock for his foot, a paper hospital gown to his wrists, rubber gloves, a bonnet (for the hair he no longer has), goggles and a nose clip (he looked quite odd but he made me delete the photo) - was placed into a plastic tent (to keep the chemo contained) and he started about 11:30 or so. The chemo ran in five doses of about 15-20 minutes each, with five minutes off between. Afterward, Seth cleaned up and dressed and we waited for about a half hour for a blood draw. Virtually no side effects at all during the treatment - Although last night Seth felt a bit feverish (he was normal) and had a mild cough and discomfort in the lungs - which persisted to this morning.

We were also informed that surgery would be after the second round and before the third, so that is both comforting and scary - They will be removing the larger (visible) tumors and then continuing on with the chemo for up to a year, as long as there is no new growth. I'll add more info here after the next round and scan results.

Update on August 22, 2006

Over the past few weeks Seth has had on and off problems with his breathing � We knew there was some fluid in/around the lungs (effusion) due to the tumors as well as other factors (low hemoglobin, tumors themselves, common cold, etc�). Seth had his first inhaled cisplatin a couple weeks ago and that brought on some more coughing which made his shortness of breath more pronounced. His activity level has also been relatively high (this weekend my cousin Rachel and her husband Brandon took Seth for a ride in a 1940 era bi-plane and for a day out on a speed boat - I'll ahve photos and video up in a few weeks) plus he got a nice sunburn (told him to wear sunblock!!! but NOOOO).

Anyway, yesterday he was having a very hard time breathing so the doctors where he getting his trial (Montefiore) felt it best he come in so they could look at his lungs. They took some x-rays and found a significant amount of fluid and decided to tap it to relieve some of the symptoms. Well, about 8:30 last night they inserted a chest tube (pleural space) and out poured two and a half liters of fluid in less than an hour! They stopped it (clamped the line) because they didn�t want Seth to lose too much fluid too fast (risk of shock). They got him into a regular room around midnight and continued to unclamp his line for short periods over the past nine hours or so and in that time he has drained an additional two liters! Makes you wonder how he could breathe at all with that much fluid around his lungs. He finally got settled in (and fell asleep) and I left the hospital around 1:30 AM.

I�ve spoken with him a couple of times this morning (he woke me at 6:10!) and he is feeling great. The breathing is much better (like I�m surprised at that) and he is feeling generally great. I just hope this does not preclude (or exclude) him from his next scheduled treatment of cisplatin this Thursday. I�ll be speaking to his doctors later today and we�ll know more then.

Update on August 26, 2006

Much has transpired. Seth is home right now. He will be having surgery on Monday to remove the tumors in the left lung and the one behind the heart. This is a very risky surgery but the surgeon (Dr. Samuel Weinstein) believes this can be successful (he is still talking cure). We are working toward getting these out and getting Seth back on the inhaled cisplatin as soon as possible. I will update the page sometime after the surgery but probably not before the middle to end of the week.

Update on August 29, 2006

Seth has come through with flying colors. Much thanks go out to Dr. Samuel Weinstein and his team (a truly amazing group). The short story is they removed six tumors from Seth's left lung and one from behind his heart. These were all large tumors (Dr. Weinstein said he "filled a bucket"). They had to sacrifice the nerve that leads to Seth's left diaphragm but that was to get the one behind the heart. Bottom line is we were told this was "the best possbile outcome" and you just cannot beat those words! They did not need to remove ribs/chest wall and this is just overall great news as Seth can continue with the inhaled cisplatin trial when he is able to breathe right.

Seth is recuperating (will take about two weeks) and has had a truly remarkable attitude with all of this. His pain is somewhat under control (when is it ever 100%) but they did an epidural to control the pain without too much morhpine. Seth was able NOT to need to wake up with a respirator and he was extubated in the OR (much better for him - he hates being intubated).

I'll try to update this space this weekend with more news. Thanks to all for the good thoughts and prayers - They all helped!

Update on October 4, 2006

Well, lots has transpired over the past couple of weeks � so I�ll quickly recap and give you the digest version (some stuff may be too detailed/technical for some but just ignore the stuff you don�t understand.

After Seth�s surgery he has had a rocky road to recovery. Seth has built up a physical dependence on the pain killers (morphine, oxy-contin, oxy-ir, methadone) and is finally starting to feel better with that (they are now weaning him slowly with a combination of oxy-contin and methadone � they have both the withdrawal symptoms and pain under control).

That said, Seth is no longer involved in the inhaled cisplatin trial (although I would still highly recommend that to folks looking at osteo lung mets). Since Seth has not been able to pass a pulmonary function test since before the surgery, it was felt he should get onto something systemic so we can start to battle the micro metastatic disease we all feel is present. Dr. Gorlick felt it best to try an anti-angiogenetic route and we are starting Seth on oral Temozolomide (daily pill five out of seven days per week) along with medium sized doses of methatrexate (somewhere around brain tumor dosage) every other week. Something I didn�t know � Dr. Gorlick explained that the anti-angiogenetic effects are not just based on keeping oxygen from the cells but glucose as well, so even though the mets are in Seth�s lungs, this still has a chance of working. (More on anti-angiogenesis can be read about here: http://www.cancer.org/docroot/ETO/eto_1_3_Antiangiogenesis_Therapy.asp).

Seth had a baseline CT scan and will do so again in about four-six weeks, so we�ll know then if this is working.

I�ve discussed other options with the doctors and these may be used later (like Junovan/Mepact or other similar agents) and I would like to think about monoclonal antibodies if this doesn�t work. I spoke with Dr. Gorlick about Samarium and he explained that this really is not geared for lung mets, but works with bone mets. Also, he explained that while we could test Seth for HER2 expression, herceptin is given in conjunction with adriamycin and Seth has already had way too much of that.

Thanks for your thoughts and prayers � I�ll let everyone know how this all goes just before Thanksgiving.

Update on March 13, 2007

Sorry it�s been so long since I updated this page but much has happened over the past few months.

Where to begin�

Back in November Seth started with the oral Methotrexate and Temodar. Dr. Gorlick felt these two drugs had a good synergy and were worth a shot. As it turns out, Seth�s tumors did not respond to this combination and in February it was found out that Seth had a �big� (word they used) tumor growing in his upper left lung. He also had �things� on the left side of his chest wall, which were either calcified (dead) tumors, live tumors or scar tissue left over from the surgery in August � We were told these were not serious at the moment except they were rubbing on the ribs and causing no small amount of pain. The good news was that there was no involvement with his right lung at this time - the original single lung met was in the right lung five years ago but that was resected and there has been no problem in that lung since.

Anyway, it was decided that Seth would try a new agent � Pemetrexed � in a pre-clinical trial. It helps that Dr. Gorlick wrote this trial for CureSearch and that the agent is generally available. So on Feb. 16, Seth started with this new chemo, which could theoretically run for a year. If this works we are looking at a pneumectomy (removal of lung) and some resection the chest wall and other things as well � A massive surgery but Dr. Weinstein (the surgeon who did Seth�s major surgery last August) said he was willing to try this, as long as the chemo works. He has told us in the past that he wouldn�t do a major surgery if there were no hope of a �cure�, so this is encouraging.

Prior to this Seth planned to go to Florida for a two week trip (he was really homesick) and the med team said he could still go, so on Feb. 24 Seth flew down with hopes of returning for the next round of chemo two weeks later (would have been last Saturday). Well, once Seth got there he went neutripenic, meaning his blood counts - platelets, red cells and neutriphils (white cells) - were crashing. He needed to go in-patient while there to get fluids and blood products (platelets and red cells) and for all but about two days while down there has been either bedridden or in-patient.

To complicate matters further, he developed very bad diarrhea and stopped eating on top of that. He was wasting away, dumping huge amounts of protein out in his stool and not being able to replenish due to no appetite plus his inability to keep whatever he could get down inside him long enough to matter. He also started to swell up (very bad edema) and his skin turned purple � Frankly, I thought this was the end. Then to top it all off, he developed blisters on his hands and his skin started flaking (peeling). Not a very good situation � He was also being highly medicated so he was not conscious much and certainly not in any position to relate to me what the doctors were telling him (they would also not call me back without constant badgering from me nor would they even speak to the med team in NY that was treating him � as these Florida docs were the ones who had given up helping him last July). Of course it doesn�t help that Seth can be a difficult patient, but considering these are grown men and women medical professionals in relatively good health, whom you would think have seen this before, would cut him a little slack and not just treat him (or me for that matter) as a worthless lump of flesh. (OK � Rant over).

So long story short, Seth agreed to go on TPN (IV nutrition) last Friday and has been steadily getting better since then. His swelling has started to go down and his color has improved (not better, just better than he was). His skin is still peeling but it looks like he�s turned a corner. His diarrhea has also started to get a bit better and he sounds a gazillion percent better than he did. He has even started eating again (mostly pasta with meat sauce and bagels with peanut butter and honey), plus he has been a trooper when it comes to drinking and has even started drinking plain water again (something he wouldn't do at all in the past).

A close friend (Sharon) started the wheels in motion on Monday night and we now have an "Angel Flight" for Seth on Friday morning so we can get him back to Montefiore this week. I cannot thank her enough! I also cannot praise the Corporate Angel Network enough as they have bent over backwards to help us with this.

I will be flying down tomorrow night and will be bringing Seth back to NY on Friday morning and then directly to the hospital, where they are already expecting him.

I asked Dr. Gorlick if this was the time to stop thinking about how much time and start thinking about the quality of what time is left, but he said that this was not the time to give up and he was still willing to fight if we were (I really did need to hear this).

I'll try to be more timely in an update next week sometime when we have some opinions from the main med team (if I can only keep off of this emotional roller coaster!).

---

Update on May 6, 2007

My Friends

The time has come - Seth left us very peacefully at around 4:00 AM this morning.

I was told last Sunday that the time was near so Seth's entire family and many of his friends were able to come in and say their goodbyes while Seth could know they were there (while not conscious much of the time Seth was aware of just about everything around him for quite some time this past week).

His brothers (Jeremy and Stephen) and I were sleeping in his room at the hospital last night and about every fifteen minutes or so, I woke up and looked at Seth to make sure his oxygen mask hadn't fallen off. At a bit before 4:00 I looked over and saw him breathing and that his mask was on. At a little after 4:00 I was awakened by one of his nurses who told me she thought he was gone. He was still warm with a peaceful expression on his face, but his heart was no longer beating and he was not breathing. He went as I had hoped he would, no pain, no fear, peacefully and in his sleep.

We were able to say our goodbyes earlier that day and told Seth it was OK for him to go if he needed to - But even at the end, Seth played a good one on us - He left this planet at around 4:00 AM on May 6, 2007 - That's 4-5-6-7 - How Seth is that.

Thank you all for your support over these past seven and a half years of our journey - Seth would say the same.

I will be leaving this blog up indefinately (at least a few years) and will over the next few weeks and months, rearranging and adding new content celebrating Seth's life.

Seth was always upset that he couldn't donate his blood or organs after his original diagnosis, and he was pleased that this website was able to help others.

May you each be blessed by Seth's life and please, every April 20th, hoist a StrongBow and toast this wonderful young man - Forever 24.

Bruce

---

Update on August 1, 2007

Seth's friend Josh particiapted in an American Cancer Society Relay For Life. Photos can be seen by clicking here.