Dan Fox

DSRCT Diagnosed 4/2000 at age 16 - Passed Away 9/6/02

http://www.dsrct.demon.co.uk/danfox.htm

From Dan's web page :  Introduction - 23rd March 2002

My name is Lynette Campagna, I am writing on behalf of my entire family, in regard to my nephew Dan.   Dan has cancer.  Desmoplastic Small Round Cell Tumor. He was diagnosed on April 14, 2000 at the age of 16.

First I'd like to tell you who Dan is.

Dan is now 18 and about to graduate high school. Besides being intelligent, (straight A student) funny, witty, loveable, handsome, a good friend, good sibling and good son, as well as nephew, cousin and grand- son. Dan is courageous, hopeful, so strong and admirable. He believes he can beat this demon that lurks inside. He inspires us all everyday with his strength and positive attitude.  And all the while with little or no complaints.  We are a strong, close, supportive family who can and will do whatever it takes. And will go wherever he needs to go to win. He is loved so much more than I can ever express.

As briefly as possible, the following is Dan's story.

On 4/14/00 Dan had surgery to remove what was thought to be a routine appendectomy, however, a 4-inch tumor was removed instead. This tumor was in the omentum along with numerous nodules in the peritoneal lining. At the time of this surgery they removed the large tumor along with most of the omentum. While Dan was recovering from this surgery, an oncologist was brought in immediately. He had a central line implanted and began chemotherapy by the end of April 2000. He was on a combination of chemos of which were administered for 72 hours with three weeks off in between. He had a total of 6 rounds of chemo that ended the beginning of August. In June 2000 Dan had a PET scan, which was inconclusive. In August of 2000, the doctors performed laparoscopic surgery, and to everyone's surprise they removed another 2-inch flat tumor that was along the ureter. Along with some live nodules there were necrotic ones that were removed as well. After this, Dan began 7 weeks of high dose radiation every day, off on the weekends, which ended on October 31, 2000. The last 4 days of radiation he also had another chemo administered, this one was called Irinotecan. After some confusion as to what the next step would be, (he wasn't on anything during the month of November), Dan began 6 months of oral chemotherapy, this was called VP16. This oral treatment lasted through the beginning of June 2001. During this 6 months Dan had constant blood draws and CT scans. His blood levels always recovered within normal ranges, and the CT scans all came back showing no cancer. When the oral chemo ended, he was not under going any form of treatment.

Fast forward to January 8, 2002. Dan had his regularly scheduled CT scan, the results were disappointing. It showed that the cancer had come back, one spot where the original tumor was and 4 spots on his liver. Shortly thereafter Dan began taking Gleevec. Within 2 weeks of that January 8th CT scan Dan had a liver biopsy along with an ultrasound. This confirmed it was the same cancer. Approximately 2 weeks after that Dan had another CT scan and the news was even more disturbing. The cancer had spread to more spots on the liver and now also on the spleen. The Gleevec was stopped immediately and Dan started on Rebeccamycin on February 11, 2002. The protocol for this is 1-hour infusion with 3 weeks off. It is still part of a clinical trial at this point. The 2nd infusion, along with a follow up CT scan, which was to be administered on March 4th, was not done. On Sunday March 10, 2002, Dan was taken to the emergency room, and later admitted, with severe lower abdominal pain. After numerous tests and a CT scan, it was determined that he had a partial bowel obstruction.  It is believed to be caused from the tumors.  The doctors externally manipulated his intestines and was released from the hospital on Wednesday. By Friday of the same week, Dan was experiencing pain again, only this time higher in the abdomen. Went back to the hospital and was given pain killers and sent home. This pain is also believed to be from the tumors on the liver.  As of today, Dan is still having abdominal pains. 

We've had a couple of second opinion consultations with conflicting views as to what Dan's next course of treatment should be. Two of the opinions believe that Dan should have the high dose/stem cell transplant treatment, while his current physician and another oncologist are strongly opposed to this, due to the fact that he had such high doses of radiation. As of now we are going forward with the next chemo as recommended by his current pediatric oncologist. This is Irinotecan, administered 1 hour a day for 5 days and then off for 3 weeks.

2nd Update - 4th May 2002

Dan's abdominal pains subsided and he began with the Irinotecan on Monday March 25, 2002. This was administered as a 1-hour infusion for 5 days and then off for 2 weeks. He was very sick during the off period, however his blood counts remained within normal ranges. (???) The first day of the second round of chemotherapy was to begin on Monday April 15th, after an updated CT scan. The results of this scan were not available until the next day, so the chemo was postponed until Tuesday April 16th. The CT scan showed that there was little change in the tumors except that one of the tumors on the liver seemed a bit larger. It was decided that Dan would have another 5 days of the Irinotecan, which did begin that same day. After this first infusion, Dan was very sick, nauseated. The same evening he also began experiencing severe abdominal pains again and was taken to the hospital and later admitted. After spending the night in the hospital, the surgeon had told Dan that it was time to perform abdominal surgery and remove this blockage.  Dan wanted the surgery as soon as possible; the surgery began at 10:30 pm on Wednesday night April 17th. At 1:30 am the doctor returned to the waiting room with the horrific news. The doctor removed a cauliflower-sized tumor that had grown in and around his small intestine. He also removed approximately 2 feet of his intestines with the tumor. At this same time he also had to give Dan an Illeostomy due to the extent and nature of the surgery. Its probable that this illeostomy is permanent. Upon exploration of Dan's insides the surgeon also stated that Dan's pelvic region was loaded with tumors and that the liver is covered with tumors. The doctor also had to remove the abdominal wall lining as well as the abdominal muscle because the tumor had grown into these as well. He had to perform reconstructive surgery to give Dan an abdominal muscle as to protect him.

The day after that surgery Dan was in a lot of pain. His abdomen was distended, his blood pressure and hemoglobin were very low.  By Friday April 19th the doctor had to open Dan up again.  On Saturday Dan was still in bad shape. His stomach was still distended; the illeostomy and stoma weren't functioning properly.  On Sunday April 21st, the doctor did surgery again. (That's 3 major abdominal surgeries in 5 days) He had to remove 8 more inches of the intestine and create a new stoma. He also rerouted the intestinal tract to the stoma. 

This brings us to Monday April 22nd.  Dan was in severe pain. He was put on a morphine drip. Dan also developed 3 different kinds of bacterial infections. He was immediately put on 3 different kinds of intravenous antibiotics. The first couple of days after the 3rd surgery Dan slept most of the time. Shortly thereafter he began his breathing exercises (to keep the lungs clear), physical therapy (arms and legs while lying in bed) and began walking around the hospital floor. (Dan's mother is a physical therapist.) He wanted to work hard and get strong to go home.

At this time Dan was experiencing a pain in the lower right side rib cage.  A couple of days later Dan complained of pain on the right side, but lower this time. They were concerned that it involved the kidney/ureter. They then did an ultra-sound on the right side to try and determine what these pains were. The ribcage pain was still inconclusive. The other pains revealed that there might be some blockage on the ureter, probably caused from a tumor on the kidneys and/or the ureter. A urologist was brought in and performed some more tests. He believes that Dan will need a stent implanted in the ureter from the bladder to the kidney to relieve the pressure that this tumor is causing. However, the urologist says that this is not a critical emergency and that they can wait to do this procedure until Dan is recovered more and is stronger.  It was also determined that Dan has 25% function in one kidney and 75% function in the other. Apparently this isn't as bad as it sounds, because normal healthy kidneys only function at 50% each, so in Dan's case the healthier kidney is picking up the slack of the compromised kidney with cancer. This all took place at the end of last week, approximately April 26th. On Wednesday May 1st, Dan had an MRI to see if this could be more informative as to what this pain on the right ribcage is. Again, nothing appeared to be there.

Yesterday, May 3rd, Dan finally had the catheter removed. The main concern now is for Dan to start eating. He has taken in very little by mouth, has no appetite, says everything has a bad taste. He has also been vomiting and therefore afraid to eat. We are hopeful that his mental state and ability to eat will improve once he can get home, which will hopefully be this Monday May 6th. (Dan hates the hospital) However, he will have to come home with the nutritional I.V. bags until he can eat on his own.

During this time, the cancer that lead Dan to this position, has not been addressed. We are scared, anxious, angry and confused. We don't understand how all the CT scans and PET scans and MRI's Dan has had did not show one sign what so ever of this cauliflower-sized tumor that had engulfed his intestines and at the same time not cause continual pain. Or how these scans did not reveal all the other cancer that is inside of Dan. These scans and tests did not benefit Dan what so ever. These findings, of so much more disease than the scans ever revealed is incredibly disturbing.

While things look bleak, we cannot and will not stop fighting for and with Dan. We haven't given up on Dan.  We CAN'T lose him. He is just an 18 year old baby who hasn't had a chance to live. He is such a good guy that is loved so much more with every passing day. By all of us, his parents, his brother and sister, his grandparents, cousins, friends, co-workers, class-mates, his uncles and his aunts. That's who I am. I will do anything to help my nephew Dan. We have to save him.

3rd Update -16th September 2002

The following is an update on my nephew Dan Fox. So much has happened since May 4th, I apologize if its redundant. First Id just like to say this. The medical profession failed Dan, in many ways. Time and again these medical people seemed to give up on Dan. They did not treat him as the courageous individual that he is. They just saw another cancer patient, they didn't see Dan. He is more than blood and bones and skin. He has a family that loves him. He is my nephew.

During the 3 long weeks that Dan was in the hospital from the three abdominal surgeries, (where they removed his abdominal muscle and over 2 feet of his small intestine and gave him an illeostomy) he became a patient of a different hospital with a new oncologist. (He is a sarcoma doc) This change of events happened for a number of reasons; the most important being that Dan's original oncologist called to tell them that he was leaving the state to take a job elsewhere. I think he felt lost, anxious, confused, scared, but never complained.

During the hospital stay he had so many complications, including the fact that he had 3 major abdominal surgeries in 5 days. After Dan's long, difficult stay, he came home on Monday May 6th.  However, his recovery was slow going. He had to come home with TPN (nutritional IV bags) because he wasn't eating. He moved around very slowly, and couldn't stand up straight. This is because they performed reconstructive surgery after removing his abdominal wall lining and muscles that were full of disease. Every evening he had to be hooked up to the TPN drip. This was a 15 hour drip thru the night, which was very difficult for him.  Also, I believe living with the illeostomy has affected Dan's mental state, and his inability to eat.

On May 16th, Dan had a CT scan. The results were vague. On May 20th the urologist determined that he would need a stent implanted in the right ureter, as it was blocked from a tumor. The next 10 days were spent healing and trying to eat. At this time, Dan also began working with a nutritionist. He started on a regimen of vitamins and supplements as well as proper diet and nutrition, which could help Danny's body function at an optimum level. (Except that Dan was still taking very little food in by mouth) He would also have constant blood draws, which continually showed improvement in the metabolic function of Dan's body and cells. We also found out that Dan's tumor was testosterone dependant and that he could be treated with androgen blockers. This was great news. We still had hope, and Dan was a fighter. On May 31st, Dan went in for the stent implant, however the procedure didn't work, and he came home with a walking catheter instead. Very unpleasant, but Dan didn't complain. He never did.

Dan's high school graduation ceremony took place on June 2, 2002. Sadly, he was not able to attend the event, as he physically and mentally wasn't capable of sitting for that long. I went and recorded the graduation for him. On Tuesday June 4th, the principal held a private ceremony in his office for Dan to receive his much deserved high school diploma. We, Dan's family and his two best friends, were all there with him for this special moment. He was very happy. He had accomplished so much thru such adversity. Dan inspires us all everyday with his strength, courage and positive attitude. We all have always been so proud of Dan. And even more so as he fights for his life with grace and dignity. He is a fine young man.

On June 7th, Dan received his first round of androgen blockers. One of which is a subcutaneous implant in the abdomen that works for 3 months, the other orally, taken daily. On June 13th, Dan had undergone the second surgery to implant the stent in the ureter. This time the port of entry was thru his back, thru his kidney to the ureter. The catheter was removed, the stent appeared to be working, and the ureter was functioning normally. Dan also began seeing a psychologist for the first time since this nightmare started more than 2 years ago. He likes going to see him. We are all so grateful that Dan feels comfortable talking to someone. Dan is still on the TPN, not eating yet.

Dan was able to get away with his family (his mom, dad and younger siblings, Matt and Sara) for a few days at the end of June, to the Wisconsin Dells. He had a nice time, but it was difficult. Had to bring so many medical supplies with- the TPN and the illeostomy supplies. However, he was able to go swimming for a short while, which made him happy.

During the month of July things were quiet, relatively speaking that is. Dan was still not eating much of anything. He is very weak and losing weight, becoming very thin. His surgery wounds have healed, but he still cant stand up straight. He also would continue to pass blood clots, since the stent implant. That never subsided. On July 6, 2002 Dan had a CT scan, one month after being on the androgen blockers. The results were somewhat hopeful in that there was no apparent growth of the tumors. However, being that the scans have failed him in the past, we were cautious. But because this cancer grows at such a rapid pace (it can double in size in 28 days) it seemed that if there was no significant change that possibly the androgen blockers were working, slowing down the growth of the cancer. We wanted to believe that. So it was decided that Dan would continue with the current protocol.

Dan continued on with immeasurable strength and courage. And of course, without complaints. He was also able to hang out with his friends. Which brings me to Sunday August 4th. Dan went to his friends graduation party. He did okay, but you could see how thin and weak he was. Dan was still not eating. On Wednesday August 7, 2002 Dan went into the hospital again, with what seemed to be another blockage in the ureter. On Friday August 9th, Dan had another CT scan. This one 2 months after being on the androgen blockers. The results, same as before, no significant change. We were hopeful that the blockers and nutrition and supplements were working. However, during these next 3 weeks that Dan was admitted things went from bad to worse. The day he went in he immediately got a staph infection. Apparently the only place you get one of these is in a hospital. That's a sad fact. So many things happened, I couldn't list them all. It all happened so fast. They ran more tests, and chest x-rays, and 2 more procedures to remove and replace the stent, which is very difficult and painful. He also suffered from edema (swelling in his legs.) On August 23rd they told us that his lungs began filling with fluid and that there was nothing else that they could do for him, that he would be dead within hours. What? That cant be, the androgen blockers are working, the cancer has slowed down. This can't be!! NO!! Not Danny, he has a strong will and spirit, he wants to live!!  Dan just wanted to go home, and the only way to get him there was to take him home under hospice care. All hospice does is keep him comfortable, with enough morphine. Its quite sad. An 18-year-old life should not end this way. On Saturday August 24th Dan came home. Of course this wasn't without complications as usual. Dan fought for 2 more weeks, but then couldn't go on anymore. You could hear our hearts breaking.

Dan Fox passed away on Friday September 6, 2002, at home. He was 18 years old, 3 1/2 months shy of his 19th birthday. He fought a tough valiant fight for 2 1/2 years. We tried so hard to keep this from happening! Im so sorry Danny! Im so sorry!

Dan was the strong silent type. He was smart, witty, and had an awesome sense of humor, his laugh was contagious. Dan was fun to be with and liked to have fun. Dan was a good soul. He was honest, sincere, kind and quite handsome. The kind of guy any girl dreams about. Dan was strong and courageous beyond words. He was an all around good guy. The kind of guy that you just wanted to be around. He was taken much too soon, a life too short, potential untapped. Dan was loved more than I can ever express; he was a son-a brother-a grandson-a nephew-a cousin and a friend. We love you Danny-you will be missed dearly-you are in our hearts for always. You Daniel are our HERO.

There's a place where care can not enter...

where happiness has no limit...

where peace is part of every moment...

a place where time is eternal...

where love lasts forever...

where everything is perfect...

a place beyond,

where loved ones meet again.

Dan is gone. We cant believe those words. It still feels surreal, that all of this couldn't have really happened. It is very difficult to rationalize the death of a once strong vibrant young man. Its much easier to accept the death of a 70 or 80 year old person. And while losing a loved one, at any age is always difficult, at least they got to live and experience what life was about. Dan was just an 18 year old, a baby. His life cut short as with many other young cancer victims, they didn't get a chance. Dan was a good boy. He had so much to give. This shouldn't have happened. How could he be at a party on August 4th and pass away on Sept 6th? This is difficult to comprehend, to accept. Dan was a fighter, he never quit, he never gave up, he never whined and complained. It is only after going thru something like this that your outlook on life changes. Yes, you realize how precious and fleeting that our time here on earth really is, you cherish it. Our opinion of the medical profession was altered. Its difficult to believe in chemo or radiation. CT scans etc. failed Dan from the beginning. We now realize that there will probably never be a cure for any cancer. They will only be able to improve the ways for which to manage the disease. In reality, no disease has ever been cured. Polio or TB or even measles etc., these are all being controlled with a vaccine, but there is no known cure for them. This is the reality of cancer. Cancer will touch every single person in some form or another, yourself, a family member, a friend. Weather it be hereditary or from life style or the environment.

We Love You Danny, so much!! You are never alone; we are all with you always!!

Until we meet again.....

 

 

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