The Story Begins

Alex was born on July 3, 1995 by caesarian section at St. Barnabus Medical Center in Livingston, New Jersey.  He was our first child.  He weighed 7 lbs. 13oz. And was 21 inches.  Overall, everything went fine, except for a short bout of jaundice that he suffered.  However, he was released from the hospital within two days of birth.  Once at home, Alex became colicky and needed to be given Nutramagen, since he also developed a reaction to milk.  To this day, he still doesn’t drink milk. 

By all accounts, Alex behaved and acted normal throughout his toddler years.  At about 18 months of age, he had minor surgery to clear a clogged tear duct at Morristown Memorial Hospital.  His weight and height during this period was consistently within the 90 percentile, although he was a very finicky eater. 

December 1998 brought on the very first signs of the trouble that lie ahead. On Christmas morning, he vomited after opening his presents.  He did not complain of any other ailments.  We dismissed it as an upset stomach.  In January 1999, we enrolled Alex in a pre-school.  We had wanted to enroll Alex during the previous September, but he was not potty trained at the time.  Alex was at first nervous regarding school. My wife had to stay in the class with him for the first few sessions, but soon he enjoyed his schooling. 

During the early winter and spring of 1999, the vomiting continued.  These symptoms were now coinciding with intermittent headaches.  We brought Alex to his pediatrician and usually we were told that maybe Alex had an allergy, hay fever, and/or migraines.  His mother was also pregnant at the time with our second child (due July 1999), and the stress of this upcoming event could also have been causing Alex’ symptoms, as we were advised. 

By May 1999, the symptoms continued.  Alex’s behavior was subtly changing.  He was spending more time watching TV and reading books.  His physical activities started to wane.  Again, we interpreted this as a personality change. After yet another visit to the pediatrician regarding his symptoms, we were referred to a local pediatric neurologist.  After the routine checkup, the pediatric neurologist advised that Alex appeared normal, and there was no reason at the time to pursue an MRI.  We were then left once again with the allergy, hay fever, or stress diagnoses.

By Alex’s 4^th birthday on July 3, 1999, the symptoms were continuing, but Alex kept busy playing and doing the things that other 4 year old children do.  The headaches and vomiting were intermittent, but Alex would always recover quickly.  This is what continued to throw us off.  On July 6, 1999, Alex returned to his pediatrician for a routine checkup for a 4 year old.  During the exam, the pediatrician noticed pubic hair growing on Alex’s scrotum.  We were told he had “precocious puberty” and referred to an endocrinologist.  An appointment was made for August 1999, the soonest that we could get an appointment. 

I soon started researching ‘Precocious puberty” on the internet.  The information that I found caused me to get a sinking feeling; especially when I read that a brain tumor could be the cause.  However, I dismissed it.  I told myself “Alex was to a pediatric neurologist, how could he have a brain tumor”?  I spent a few more days researching “Precocious puberty” and then decided to call my aunt, Rosemarie Guzzo, who is a pediatric RN at Beth Israel Medical Center in Newark, New Jersey.  We explained the situation to her, especially our need to wait a month to see an endocrinologist.  She would check at her hospital and see what could be done.  My aunt called us the next day and asked that we bring Alex to her hospital on July 12, 1999, for an exam by Dr. Luigi Garibaldi, a pediatric endocrinologist.

We arrived at Beth Israel Medical Center, Newark, NJ at 8:30am.  My wife was doing the best she could; she was scheduled for a cesarean birth of our daughter the very next day at St. Barnabus Medical Center in Livingston, NJ.  We were met by my aunt, and Dr. Michael Doyle, a pediatrician whom she works with. We then made our way to Dr. Garibaldi’s office. 

My wife, aunt and Dr. Doyle were present while Alex was examined by Dr. Garibaldi.  As part of the examination, the lights were shut off, and Dr. Garibaldi looked into Alex’s eyes with a light.  At this point, we realized something was wrong.  The doctor appeared to be taking a long time to look into Alex’s eyes.  We were advised that Alex appeared to have pressure in his head.  Dr. Garibaldi left the room and returned.  An emergency MRI was scheduled immediately within the hospital.  We did not know what to expect.  Alex was sedated and given the MRI.  We were brought to a recovery room and awaited the results.  At this time my aunt and Dr. Doyle were also present. 

The time spent in recovery was torture. Alex finally woke up and was anxious to leave.  He also did not like the I.V. needle that was left in his arm. We were awaiting the MRI results.  I was still trying to convince myself that this wasn’t serious; maybe Alex only needed medication to cure his problem.   At approximately 5:00pm, Dr. Garibaldi entered the room with a pediatric neuro-surgeon.  Our worst nightmare was realized; Alex had a lemon-sized tumor at the base of his brain.  Nothing in life can prepare you to hear that.  Immediately, plans were being made as to where Alex would have his operation.  The pediatric neuro-surgeon was going on vacation, so he could not perform the operation.  Hospital staff were now entering and leaving the room with a hurried pace.  Alex would need to be treated as soon as possible; the pressure in his head was tremendous.  I went onto another room and called my parents and in-laws.  I could barely get the information out.  Luckily everyone lives within 20-30 miles of the hospital.  They would make there way to Newark.  Meanwhile, my aunt contacted my wife’s OB/GYN to postpone my daughter’s birth as long as possible.  We would need to deal with this crisis.  By the time the grandparents arrived, it was decided that Alex would be taken by ambulance to Beth Israel Hospital in New York City.  We were told that they specialized in pediatric brain tumors.  It was now 9:00pm.  The ambulance headed out with Alex and my wife.  The rest of us left for New York City in two cars.  We arrived at the hospital at approximately 10:00pm, before the ambulance.  The ambulance driver became lost and went to 2 other hospitals before arriving at Beth Israel at approximately 10:30pm.  Once there, we went through admitting and Alex was placed in a semi-intensive care unit.  Dr. George Jallo, a pediatric neuro-surgeon spoke to us and showed us the MRI scans that traveled with us.  He told us to get some rest and we would discuss everything in the morning.  My wife stayed the night with my mother in law next to Alex’s bed.  We were still concerned about Patti’s condition and worried about her going into labor.   I went back to our home in NJ to pack some clothes and return the next morning.  It would be two weeks before I returned.

The next morning, Alex appeared to be doing well.  We brought his favorite toys, and he was watching cartoons.  He also requested his favorite breakfast; a McDonald’s hash brown. We kept up our spirits as much as possible.  We were to meet with Dr. Fred Epstein later in the day to discuss Alex’s condition.  During the meeting, we were told that Alex had a “medulloblastoma”, and that it could be removed through surgery.  My first question was, “Is it cancerous”.  I was advised that this type of tumor usually is, but we would have to wait until after the operation for a definitive answer. The surgery was scheduled for the next day, Thursday, July 15, 1999.  The surgery would last approximately 6 hours.  Dr Epstein, “Fred” as he is called, appeared to be very re-assuring.  He was also concerned about Patti going into labor.  Since our hospital was in New Jersey, and this hospital did not have a birthing center, plans were made to take Patti downtown in NY, in case she went into labor.  However, Patti was determined to stay with Alex as long as she could.

I was able to get a hotel room within walking distance of the hospital.  I contacted work to let them know what was going on and that I wouldn’t be in for a while.  Everyone was very understanding.  On the morning of the operation, Alex’s biggest complaint was that he could not eat or drink.  I contacted a local priest who performed “the anointing of the sick”.  I couldn’t believe that I had to arrange this for my son.  We were advised that the surgery was scheduled for 2:00pm.  When the time came to wheel Alex to the operation room, he was already napping.  I would get to accompany him to the operating.  Luckily he slept, until entering the operating room.  As we moved him to the table, he awoke and started to cry for his mommy.  However, the anesthesia soon took affect and I was escorted out.

During the operation, we were provided with an office where the extended family could wait.  I found a church in the neighborhood and prayed; I again found religion. At approximately, a nurse practitioner sat down with us to advise that the operation was over and that everything went well.  Dr. Epstein then visited us and stated that the operation went well and that “95% of the tumor was removed; only a raisin size piece was left”.  We would be able to see Alex very soon once he was brought into the Intensive Care Recovery Room. We met Alex as he was coming off the elevator, on the pediatric floor.  He was already awake and crying for him mommy.  His head was completely bandaged, with many tubes and wires.  He was placed in a private recovery room, where he would stay for the next 3 days.

Alex was very angry during this time.  He cried, screamed, and did not want to cooperate with the medical staff.  Alex also had a tube inserted into his skull to drain the excess fluid.  The physicians wanted to make sure that his swollen ventricles would be able to drain the fluid, or a shunt would have to be inserted.  This was yet another worry.  We were also advised that Alex’s tumor was malignant.  The lab results had come back.  Even though we prayed that it wasn’t, we knew that the odds were that the tumor was malignant.  We now waited to see what was next.

Alex was also left with the inability to use his left arm and leg after this surgery.  We were told that this sometimes happens during surgery because of the location of the tumor.  He would need extensive therapy in order to crawl, walk, sit up and grasp with his left side. 

On July 16, Alex appeared to be out of the woods, and Patti was making the staff nervous with her impending pregnancy.  It was arranged that she would be driven back to NJ in order to have the cesarean on July 17.  My mother and I would stay with Alex, who was making steady improvement.   Alex was moved to a pediatric room on July 17.  We were also advised that we would need to meet with the pediatric oncologist later in the week to discuss Alex’s treatment.  I still wasn’t sure as to what the treatment would be; we were too concerned with Alex’s immediate needs.  Later in the evening Alex was given a follow up CAT scan.  While I was waiting for him to come out, I received a page.  My daughter was born; Madison Elizabeth.  My aunt, uncle and mother in law were with my wife during the pregnancy.

On July 18, the physicians decided that the drainage tube could be removed.  Alex’s ventricles appeared to be functioning.  This was good news.  Every hour on the hour, we called Patti at her hospital bed, so that Alex could speak to her.  As much as we tried to keep him occupied, he would break out into crying for his mommy.  Alex continued to progress until my wife arrived back on July 20.  Our new daughter stayed with her parents.  We met that day with the pediatric oncologists.  We were told that Alex would receive a treatment of radiation and chemotherapy.  Alex would have a 60-70% chance of survival.  I was stunned to hear this.  A 60-70% chance of survival?  That’s it?  I was then reminded that we were dealing with cancer. 

During Alex’s initial stay, a medi-port was installed in his chest.  The medi-port was the means by which he would receive his chemotherapy and any blood transfusions.  The medi-port would need to stay there during the entire regimen.  Alex was always very aware of the “port” as he called it.  He would always wince when someone hugged him.  He said that it would hurt.

Alex was released on July 23.  He would have about a two-week break before the radiation and chemotherapy started.  The treatment had to be started within 4 weeks of the operation.  The radiation would be done at St. Luke’s/Roosevelt, an affiliate hospital in NYC.  The radiation treatments would be every weekday for seven weeks.  Each morning we would drive Alex into NYC (a 95 mile round trip), have him put under, given his treatment, recover and return.  The whole episode, from leaving the house to returning, would be about 7 hours.  On Wednesdays, we would have to drive across town to Beth Israel to receive the chemotherapy treatment.  There would be a total of 8 rounds of chemotherapy, each lasting 4 weeks, with 2 weeks off in between.  The first and last dosage, would require overnight hospital stays.  We would also have to have blood tests done on a regular basis, locally, and have the results faxed to NY.  Within 2 weeks of receiving his radiation, Alex’s hair started to fall out.  Before this occurred, we were advised to have his hair cut short so that the loss would not be as traumatic.  It was very disheartening to watch his blond hair fall out in clumps. 

Alex’s radiation treatments pretty much finished on schedule.  During the last 5 or 6 sessions, instead of administering anesthesia to Alex, the staff tried something different.  Since Alex had to lie face down in a molded form for his head during the treatment, it was imperative that he stay absolutely still.  This is why he needed to be sedated.  However, the staff placed a small video screen, connected to a VCR, and was able to watch his favorite movies.  This actually worked!  The whole procedure usually only took 15 minutes, but with anesthesia, the time frame would be 2-3 hours because of the recovery time.  We were glad the video idea worked and wished that it would have been tried earlier. 

As the chemotherapy progressed, Alex’s white blood counts became low.  Neupogen was given between cycles, by injection for ten consecutive days, in order to raise the levels.  Only when the levels were high enough, could we start the next cycle.  Alex would also have to go for regular blood tests when this happened.  I believe that throughout the chemotherapy, Alex had over 70 blood tests administered at a local lab, located within St. Claire’s Hospital in Denville, New Jersey.  Alex’s red blood counts would also drop.  This would mean a transfusion, performed in NYC.  Throughout the chemotherapy, Alex had 13 transfusions. 

Alex also started to receive homebound physical and occupational therapy.  The sessions were usually three times a week each.  Slowly, Alex recovered so that he could walk, although with a noticeable limp.  He also regained use of his left hand, although to this day, it is not what it once was.

Alex’s first routine MRI took place on October 29, 1999.  A complete MRI of the brain and spine would be performed to see if he was tumor free. This was the first of many routine MRI’s that would be performed.  Alex was sedated and the MRI was performed.  To our relief, The MRI was clean.  The small piece of tumor that had been left was gone.  We had a tremendous relief!

In December 1999, Alex started to run a temperature.  Any temperature above 101 meant a stay in the hospital.  Alex was hospitalized for 5 days because of his high temperature.  This also delayed the chemotherapy.

In February 2000, Alex awoke one morning and was laboring to breath.  We immediately called NYC and rushed him to the hospital.  He had pneumonia, and also developed asthma.  (However, this proved to be the wrong diagnosis.  Please see “Cystic Fibrosis).

During the chemotherapy regimen, monthly hearing tests were also administered.  Alex did end up with a loss of high frequency hearing from the chemotherapy.  During the chemo regimen, we were also advised that Alex would most likely be sterile from the treatments.  This was told to us informally.  We wondered what else we were not being told. 

In the spring of 2000, we decided to take Alex for a second opinion regarding his current condition, prognosis, etc.  We were still bothered by the fact that we were not told about the sterility affects of the chemotherapy.  Through a friend of the family, we were able to meet with a pediatric oncologist at the Dean and Betty Gallo Cancer Institute located at Robert Wood Johnson Hospital in New Brunswick, New Jersey.  Dr. Barton Kamen examined Alex and was re-assuring in that he felt the treatment was progressing as it should.  It was reassuring to hear this from someone outside of the medical community that was currently treating Alex.

Alex’s chemotherapy seemed to be dragging on as we started the summer of 1999.  His blood counts were usually low which meant a delay for the regimen.  His coordination was also suffering.  He was walking with what the physicians called a “drop foot”.   Alex’s chemo was reduced so that his coordination would improve.  His hearing loss was also entering the “danger” zone, due to the chemotherapy.

Alex’s eating habits also became a concern during the chemotherapy regimen.  He was always a finicky eater but now, it was a challenge to get him to eat anything.  His weight held steady in the 29 – 31 lb range during this time.  The doctors suggested that we allow him to eat anything, at anytime.  His diet consisted of fast food chicken nuggets from either McDonalds, Wendy’s, Burger King or KFC.  He would also drink Coca Cola for breakfast.  His diet has improved somewhat.  He will now at least try something different before passing judgment.

In the fall of 2000, Alex started to receive a home bound kindergarten curriculum through our school system.  The tutor worked around his treatment schedule.  He also received speech therapy along with his ongoing physical and occupational therapies.  He appeared to enjoy the schoolwork, but missed the interaction with other children.

End of Chemotherapy

Alex eventually finished his chemotherapy regimen, having received all 8 cycles, in December of 2000.  It was a long 18 months from the time of his first diagnosis.  Although we were relieved to be completed, we now had a feeling that we were on our own.  Except for the regular MRIs that were scheduled every 3 months, we would not have any regular contact with the hospital.  Alex’s medi-port would need to stay implanted for another 4 months until it could be surgically removed.  We were advised that this was a precaution in case anything further had to be done in the near future. 

Alex received his first post-treatment MRI in April of 2001.  Although all of his previous MRIs have been clear, there is always a great amount of anxiety leading up to the day.  Once again Alex was sedated and needed to recover.  Once the MRI is complete, we meet with the pediatric oncologist.  Once again, the MRI was clear.  Thank God.

During the summer of 2001, Alex was enrolled in a school that specialized in “special Needs” children.  This was to continue his therapy, which had stopped for summer vacation.  His therapy was twice a week for a few hours.  He received occupational and physical therapy.  He said he enjoyed it.

At this time, we also had meetings with our school officials.  Alex was classified as “special needs” due to his physical capacities.  He still walked with a slight limp, and his coordination is diminished.  Even though Alex had already completed the kindergarten curriculum, we decided that he should repeat kindergarten. Our reasoning was that he was still only 6 years old, the classes were half sessions, and the familiarity with the subject matter would hopefully be a morale booster.  Alex would receive speech, occupational, and physical therapy during the school day.  He would need to be pulled from class for these activities. We were not happy with that, but there were no other alternatives offered. He would also be bussed to school with the rest of the children.  He was excited about starting school and being able to finally ride the bus.  The same bus that he would watch drive by when he was home. 

Alex had another MRI in August 2001.  The schedule was now every 4 months. This MRI, it was decided that it would be attempted without sedation.  Alex was told to bring a favorite video, and a small screen was placed with him during the procedure.  The idea worked.  It was a relief not having him sedated.

Alex has been enjoying kindergarten.  He has made friends, and the teachers tell us that he is friendly and cooperative.  His coordination is still a problem; he has difficulty putting on his coat and hat.  He climbs up on the bus by himself; he is really trying to be independent.

Alex also has examinations by his endocrinologist every six months.  As of November 2001, Alex started to receive monthly Lupron injections. Apparently, he still has the precocious puberty, but this time it is an after effect of the radiation.  The Lupron will control the puberty, allowing him to continue his growth, although we were advised that it would be diminished from what it would have naturally been.  The Lupron will need to continue for the next 5 years.  Alex may also need a growth hormone therapy.  This will be determined at a later date, as per the endocrinologist. 

Alex’s next MRI was on December 28, 2001.  This would be an MRI of the brain and spine.  Every other MRI involves the brain and spine.  Otherwise, it was just the brain that was done. Once again, it was performed without anesthesia.  Unfortunately, this MRI had a small object, about the size of a grain of rice appear at the base of his brain.  It was not there during the last MRI.  The physicians cannot provide a definitive answer as to what the object is; it may or may not be a reoccurrence of the tumor. A second opinion confirmed the same diagnosis.  Another MRI was performed on February 4, 2002 and the object had not increased in size.  Even though this was welcome news, it was again decided that a spinal tap would be performed to determine if any cancer cells were present.  This procedure was performed on February 14, 2002.  Luckily the spinal fluid was clear of any cancer cells.

The “object” was still a concern and the physicians in NYC were pushing us to operate on Alex.  We felt that maybe there were other alternatives besides surgery.  We decided to take Alex to the Cancer Institute of Robert Wood Johnson Hospital in New Brunswick, NJ for evaluation.  The physicians were a bit more informative and advised us that we should go through with the operation.

On March 14, 2002, Alex was operated on by Dr. Abbott at Beth Israel Medical Center I NYC.  The operation went well; the “minimally invasive” surgery was performed and the object was removed.  When the pathology tests came back a few days later we were shocked and disgusted to learn that it was medulloblastoma.  The physicians right away advised that Alex’s only hope of survival would be a bone marrow transplant at Sloan-Kettering in NYC.  Once Alex was released from Beth Israel, we took him to Sloan-Kettering to meet with the physicians.  My wife and I had heard the horrors about bone marrow transplants and were thus already biased.

Alex was examined by the physicians at Sloan-Kettering and we were advised that Alex would be a good candidate for the procedure.  However, upon asking, we were told that up until that time 44 patients had gone through the transplant but only 14 were still alive,  We didn’t like those odds, nor the torture that Alex would be subjected to during this brutal treatment.  Our other alternative was to go back to Robert Wood Johnson and speak to Dr. Bart Kamen regarding his treatment.  Dr. Kamen believed that a “low dose” approach would be better suited to Alex.  He is also a follower of the antiangeogenisis and it was decided that Alex would start a regimen of oral drugs to combat the re-occurrence.

At once Alex started taking daily doses of Celebrex, with Cyclophosomide and Thalidomide to also be phased in over the next few months.  Additionally, Alex would need MRIs every 3 months.  This regimen has continued right through June 2003.  Unfortunately, a routine MRI taken in June 2003 has shown that another “object” has appeared in the site of the second occurrence.  We are currently investigating our options as to what the plan will be.

It was decided that our best option was stereotactic surgery.  On July 17, 2003, Alex underwent this procedure at Robert Wood Johnson Hospital.  The worst part of the procedure was securing the frame to his skull.  It was quite uncomfortable for Alex.  We will now have to wait until his next MRI scheduled for the end of August to see if the tumor has shrunk in size.

Cystic Fibrosis

As a toddler, Alex had a bout of pneumonia, and throughout his chemotherapy, he would develop fevers and a drop in his white blood cell counts.  This wasn’t unusual, however the physicians would get concerned that the counts would take longer than usual to rise back up.  Additionally, after a bout of pneumonia where Alex had to be hospitalized during his chemotherapy, he was diagnosed with asthma.  We were given various inhalers and medications to keep it under control.  However, even after his chemotherapy had ended in 2000, he would still develop infections and sinus problems that would linger for weeks and months.

Around October 2002, Alex started showing the signs of a cold once again.  He soon developed a fever and was put on antibiotics.  He soon improved, but once off the antibiotics, the infections would soon return and all of the symptoms that would accompany it. Alex was brought to a pediatric pulmonary specialist who performed a scope oh his lungs under anesthesia.  We were advised that Alex’s lungs were full of mucous and once again he was put on an antibiotic. A sweat test for Cystic Fibrosis was also performed and the results came back that he was slightly elevated, but it was not a definitive answer. This merry go round of antibiotics lasted in Christmas Day of 2002 when Alex was so exhausted and lethargic that he could barely open his presents.  The next day we took him to Morristown Memorial Hospital where he was diagnosed with having a severe infection.  He was immediately put on antibiotic IVs.  A DNA test was also performed, but the results would not be back for days.  Alex was being treated as if he had cystic Fibrosis with breathing therapy throughout the day and antibiotic cocktails through his IV.  The DNA tests came back and Alex did have cystic fibrosis.  Even the physician was shocked that Alex could have two serious and unrelated diseases.  My wife and I were also tested and we found out that we’re both carriers.  Our 4 year old daughter was also tested and it came back that she is a carrier of the gene.  The cystic fibrosis has only complicated the overall picture and now Alex must fight two diseases.  The cystic also requires Alex to have daily respiratory treatments performed by us. 

As a follow up to the Bone Marrow Transplant, we were advised that in retrospect, we had made the right decision.  Since Alex was misdiagnosed with asthma, the cystic fibrosis, and the ever present infection that is associated with it, would have had dire consequences during the transplant.  We were advised that Alex most likely would not have survived the transplant due to the complications that would have been caused by the cystic fibrosis.