July 31, 2003 - We traveled to The Children's Hospital of Philadelphia to meet with Dr. Peter Philips, Director of Pediatric Oncology. Dr. Philips advised us that Alex's current treatment is appropriate.  Additionally, stem-cell rescue would be out of the question because of the Cystic Fibrosis.  Unfortunately, the stem-cell rescue is the only "known" cure, but only has a 20% chance of success.  At this point, Dr. Philips advised that we are "extending his life" with Alex's current treatment, but it is by no means a cure.

We also received a phone call in the evening from The Children's Hospital of Boston.  Their Tumor Board  met today and discussed Alex's case.  I had sent them Alex's history and latest MRIs.  We were told that they also agreed with Alex's current treatment.  Additionally, since Alex already had stereotactic surgery to remove the tumor, he would not be qualified for one of their protocols because there is no present tumor to treat.  However, they currently do not have any open protocols for recurrence.

August 1, 2003 - Today we had a meeting with the Director of Special Services for the Randolph Board of Education.  An advocate who we contacted also joined us to discuss the plans for Alex and what he will require as he enters the 2nd grade.  At the of first grade, we were advised that Alex would most likely perform better in a "resource room".  We agreed since Alex did start to struggle as the school year progressed.  I contribute his problems to the late effects of his radiation and his present medication regimen.  Alex will continue to have an aide to assist him during the school day.  Additionally, we will meet with the child life team on a monthly basis during the school year to discuss his progress and needs.

August 6, 2003 - We met with Dr. Bart Kamen at the Cancer Institute of New Jersey.  Dr. Kamen examined Alex and advised that he would like to start him on Decadron because of its antiangeogenesis ability. This would be rotated with the Celebrex.  We will initiate this medication after Alex has his next MRI on August 18 & 19.  We split the MRI since the complete scans of the brain and spine take 3+ hours.  Alex also has a hearing test on August 20.  His last hearing test in June supposedly revealed that Alex had significant hearing loss from his last test (about 6 months earlier).  The physician recommended that Alex should get 2 hearing aids.  We do not believe the test results since there hasn't been any reason for his hearing to change.  We're aware that Alex has high frequency hearing loss due to his initial chemotherapy.  This is why he is tested twice a year.

August 21, 2003 - Alex had a hearing test in New Brunswick.  As we originally thought, Alex does not need hearing aids.  However, the test confirmed that Alex has significant hearing loss, but not all of it on the "conversation" level.  The audiologist suggested that Alex's teacher wear a microphone in class with a speaker on his desk.  This should assist in overcoming any hearing problems in the classroom.

August 27, 2003 - Alex was admitted to Morristown Memorial today.  For about the last week, he has been battling a cold.  However, he woke up yesterday and complained of a headache, and didn't want to get out of bed.  His condition didn't improve so we brought him to the pediatrician. He was very lethargic. The pediatrician advised that we should go directly to the emergency room. Alex had a low grade fever, and was not eating. By Friday, Alex was still not eating, but was still complaining of intermittent headaches. A Cat-Scan was taken and it showed nothing.  Friday evening, while Alex was sitting in the hospital bed, he had his first seizure. His head went to his left and he had a blank stare. He would not communicate. He also started to twitch his arms and legs.  The medical staff rushed in and he was soon sent to the ICU.  Alex was also heavily medicated in order to control the seizures.  Alex had a "quiet" Saturday without any seizures.  He was transferred back to the pediatric ward on Sunday.  However, there was still concern regarding the proper level of his seizure medication, Dilantin. On Monday morning, I awoke to hear Alex making a gurgling sound. (I was staying with him in the hospital room).  He was having another seizure. Once again, the medical staff tended to him, and once again he was heavily medicated. At this point, the reasons for the seizures were still a mystery.  Later on Monday, Alex completed his MRI (re-scheduled because of his cold two weeks earlier).  On Tuesday, Alex suffered yet another seizure, and later on in the day, had to re-take part of his MRI for reasons unknown.  On Wednesday, with Alex still in a stupor from the medication, we contacted Dr. Kamen at Robert Wood Johnson.  It was decided that Alex should be transported to Robert Wood Johnson since we were still without an answer regarding his seizures.  In the afternoon, an ambulance transported him and he was admitted into the Bristol Meyers Squibb Children's Hospital at Robert Wood Johnson. Unfortunately, the news that we received on Thursday was not encouraging.  According to Dr. Kamen, the  latest MRIs showed an area on the right side of the brain where the medulloblastoma most likely spread to and was the cause of the seizures.  Meningitis was a remote possibility but a spinal tap proved negative.  We were, and still are, in shock.  Never has Alex's cancer spread this fast.  Alex was released on Monday, September 8.  The seizures are under control, and he has about 6 additional medications that he must take.  He will start another oral chemo drug on Friday, September 12.  We are also investigating whatever else that may be out there as a treatment option. We keep believing that there is someone who knows how to cure this and we will keep searching.

October 11, 2003 - Alex had his MRI last Thursday at Morristown Memorial Hospital.  We sent copies to Johns Hopkins and the National Cancer Institute I also delivered a copy to Dr. Kamen's office on Friday.  I sent Alex's previous MRIs and history to Dr. Jallo at Johns Hopkins for another opinion.  Dr. Jallo is from Beth Israel in NYC and assisted on two of Alex's surgeries while he was there.  The National Cancer Institute has also been following Alex's case on my request.  With all of these physicians involved, the diagnosis has only become more confused.  Based on Alex's MRIs from September, when he was hospitalized, the diagnoses have been varied.  The MRI did show a large area on the right side of his brain. However, the diagnoses have been as follows:  Morristown Memorial believes Alex had a stroke.  They were the first to say this while he was still a patient.  Dr. Kamen believes that the cancer has spread.  The National Cancer Institute believes it is a stroke. John Hopkins believes that is it either a stroke, cancer, or an infection.  That is why this MRI is so important.  Everyone is hoping that it will be definitive as to what Alex has.  This is truly discouraging that we have some of the best physicians following this and we cannot get an answer.  We have been told many times in the last 4 years that Alex is difficult to diagnose.

October 25, 2003 - We've finally received the medical opinions regarding Alex's MRI.  John Hopkins believes that Alex had a stroke. The National Cancer Institute also believes that Alex had a stroke.  Dr. Kamen does not believe the cancer has spread; however, he is not convinced it was a stroke. Alex is still on his daily chemo medication, in addition to new medication to control the seizures.  He has started attending school on Monday, October 20. His next MRI will be in December.

December 2, 2003  -  Alex is scheduled for a follow up MRI today at Alliance Imaging in Morristown.  His MRIs have been taking place every 6 weeks since his recurrence over the summer.  Alex has been vomiting intermittently for about the last 3 weeks.  There doesn’t appear to be any set pattern and he usually feels better after vomiting.  Unfortunately, it has taken a toll on his appetite.  He has lost a few pounds and the pulmonary physician his concerned about Alex’s nutrition.  The feeding tube is once again a real possibility.  The physicians are waiting for this MRI to see if there is any explanation for the vomiting.

Alex has started physical therapy at the Children’s Institute in Cedar Knolls.  He goes there on Monday’s after school.  This is in addition to the PT that he receives at school.  He is still suffering some of the after effects of the stroke including weakness.  The additional PT will hopefully help.

Two weeks ago Alex went to an ophthalmologist.  He goes twice a year for check ups.  We were told that Alex now has a cataract in each eye, (side effects of his initial treatment), but they do not appear to be effecting his vision.  His teachers at school also noticed that Alex had difficulty with reading any material on the left side of the page.  The ophthalmologist confirmed that he has perceptual difficulties, and that Alex is probably compensating for them.  Once again, this was probably brought on by the stroke.

I’m referring to the episode that occurred in late summer as a stroke.  Unfortunately, we still haven’t received a firm agreement by all physicians involved that it was definitely a stroke.  Some think it was, others say no, and some feel that we may never know what it was that occurred.  However, Alex is currently on Keppra, an anti-seizure medication, and he is followed by a neurologist.  This will continue indefinitely.  We must also carry a  rectal syringe with a dose of anti-seizure medication just in case he has a seizure.  He has not had a seizure since leaving the hospital in September.

Alex is back to a regular schedule at school.  He enjoys being with the other children.  He is also taking the bus once again.  We’ve seen a big improvement in his attitude this year regarding his studies.  This can be directly related to him being placed in the resource room.  Alex appears to be more comfortable with the pace and has become more confident.

March 7, 2004 - From my last update until about a week ago, things have been pretty quiet.  Alex continued to gain weight and the feeding tube is no longer mentioned.  He has continued to enjoy school and socializing with the other children.  Alex had a follow up MRI on February 24 & 25. We split the MRI into two sessions because it is easier for Alex to handle. Each session is about an hour.  Unfortunately, the MRI showed a possible recurrence.  The results of the MRI were faxed to Dr. Kamen and we went to see him on Wednesday, March 3.  According to Dr. Kamen, "a large edema is visible in the area of Alex's last recurrence".  However, the edema may be caused by some type of infection.  Dr. Kamen is being optimistic that the edema is being caused by something other than a recurrence.  Additionally, Dr. Kamen examined Alex and there appears to be little change in his functioning. If it was a recurrence, Alex should be showing some type of symptoms (headache, vomiting, behavior change). It could even be caused by the after effects of the gamma knife procedure from last July.  Alex is now on a large dose of steroids  for the next two weeks.  This is to clear up the edema.  There will be another  MRI on Monday, March 22.  We're praying that this latest episode is due to something other than a recurrence.  Dr. Kamen also provided us with information regarding protocols if it is a recurrence.  This is undoubtedly a long battle.

May 5, 2004 - Since the last update, Alex has started a new chemotherapy treatment. Alex was on the steroids for two weeks and as a result, gained ten pounds during the period.  His face also became very bloated.  We repeated the MRI's on March 22 and the results showed that the edema was reduced due to the steroids.  Unfortunately, there were also three tumors present that were not there the last time. One was an object that the physicians have been watching for the last two years.  They were not sure what it was because it was stable.  However, this time it grew larger.  The other two are located in the site of his original tumor, in the cerebellum.  None of the tumors are having any outward effects on Alex.  Because of these recurrences, a Phase 2 protocol was suggested.  It consists of Zarnestra tablets, administered in daily doses. It is made by Johnson and Johnson.  Each week, we take Alex to Robert Wood Johnson where he is examined.  During the visit, we are given a week's worth of medication.  Alex takes the medication for three consecutive weeks, and then has a week off.  The medication can be continued for up to two years as long as the tumors are stable or reducing in size.  He must get an MRI every eight weeks.  Once again we're praying as we start another chapter of Alex's ongoing battle.

May 21, 2004 - Alex has finished his first round of chemo and it has taken somewhat of a toll on his overall health.  He needed two blood transfusions; the first on May 10 and the second on May 19.  We've learned from past experiences that Alex's blood counts take time to recover.  This could be due to his Cystic Fibrosis and the amount of chemo that he has endured over the years.  He will take another week off before starting his next cycle on June 1.  Alex surprised me the other day when he mentioned that "he kind of likes the MRI". He described it has being "kind of cool going into the tube".  It is good that he is comfortable with the MRI process, but it also upsets me that he has become accustomed to this kind of life.  Physicians and hospitals are the only life that he knows.

June 26, 2004 - Alex completed his second cycle of Zarnestra last week.  He had his MRIs on Thursday and Friday, June 24 & 25.  We will see Dr. Kamen on Tuesday, June 29 to go over the results. This is always a difficult time while waiting to review the MRIs.  Alex has been fighting a cold for about the last week. He has also been bruising very easily on his legs.  This is probably due to his low blood counts.  We're praying that we hear good news on Tuesday.

July 25, 2004 - Alex's results from the last MRIs were not good.  There are four small tumors, and at least one of them grew since the last MRI. Alex was taken off the Zarnestra.  He is now on a Phase 1 trial of Topotecan. It is administered orally on a daily basis.  Thankfully, Alex is still doing well physically and mentally.  The tumors are not affecting his daily functioning. He has been on the Topotecan for about two weeks and has been tolerating it without any noticeable problems.  He is scheduled to see Dr. Kamen on Wednesday, July 28 for a follow up. His next MRI will be in about a month.

August 15, 2004 - Alex completed 1 cycle (10 days) of the Topotecan. He has had 2 blood tests since completing the first cycle, but his counts are too low to start the next cycle. Alex tolerated the 1st cycle pretty well, without any major side effects.  He complained of an upset stomach twice.  Alex will have another blood test on Wednesday, August 18.  Waiting for the blood counts to rise is nerve wracking. I keep thinking of the time we're losing by not administering chemo, and fear that the tumors are growing.  Alex complained of a headache yesterday when he woke up.  However, after giving him Tylenol, he felt better. 

September 22, 2004 - Alex completed his second cycle of Topotecan.  Unfortunately, his blood counts dropped and it has now been 3 weeks since finishing the cycle.  We've been waiting for the counts to rise before starting the next cycle.  By the end of this week, the counts maybe high enough to start the third cycle. Much has occurred regarding how to treat Alex's recurrences. Radiation could be an option, but the physicians at the Cancer Institute of NJ believe that a "palliative" approach should be taken.  Alex has already received large doses of radiation during his initial treatment. There is always a risk of administering radiation again, and the side effects may not appear for at least a year. Basically, as it was explained, since Alex is not showing any physical signs of the spread of the disease, radiation will only be done to treat any tumors that are causing pain or discomfort (headaches, vomiting, dizziness). Dr Kamen has consulted with St. Jude's. Duke University and the Children Hospital of Philadelphia. I've consulted with the National Cancer Institute, Johns Hopkins and the Cleveland Clinic and all appear to suggest the same approach.  However, there are other chemotherapy drugs that were suggested that we are going to consider. Unfortunately, they are all Phase 1 studies. There are no known cures for Alex's recurrences.  Alex continues to endure the increased blood tests and physician  visits in good spirits.  He also started school and enjoys his classes.  He continues to have an aide that helps him with his daily routines in class.  We continue to take each day at a time and are very sensitive to any complaints that Alex may have regarding aches and pains.  Again we are living in limbo waiting for a "miracle" cure.

October 12, 2004 - Alex completed his third cycle of Toptecan last week.  We met with Dr. Kamen on Thursday, October 7.  We discussed that a new approach should be considered regarding Alex's chemotherapy.  Since Alex's blood counts take a long time to recover due to the many chemo drugs he has received over the years, there has always been a concern over the amount of chemo that he can receive.  Additionally, his low counts, and cystic fibrosis make him very susceptible to infections.  Dr. Kamen discussed administering a Phase 1 chemo, Depocyt, through a lumbar puncture (spinal tap).  There was a recent article in the Journal of Clinical Oncology that suggested this has promise.  Yesterday, Monday, October 11, we went with Alex to Robert Wood Johnson where Alex received his first dose in  pediatric day surgery.  He was given anesthesia and the entire procedure took about 15 minutes.  He was out though, for about an hour.  He will also be on steroids five days to reduce any swelling in the brain.  The idea behind this method of delivery is that the chemo can be delivered right to the malignant areas via the spinal fluid.  It sounds logical; we're praying that is works.  Alex will need to get another dose in two weeks.  He will then get another MRI.  If there is improvement, Alex will receive doses on a monthly basis.  Today, Alex complained of a sore back and slept a good part of the day.  This is normal after such a procedure.  We will need to watch him for the rest of the week to see if he is lethargic, nauseous, etc. His spirits are still good and he continues to give us strength.

October 25, 2004 - Alex received his second dose of Depocyt today through a lumbar puncture.  He wasn't very happy, especially when it took three tries to insert the IV needle.  He was given anesthesia and a steroid dose.  He was out for about an hour and was able to leave as soon as he had something to drink. This evening he's complaining of a sore back. Alex will need an MRI in two weeks.  If the tumors are decreasing or stable, he will return for Depocyt once a month.  If it isn't working, there is no plan as of now. He tolerated the first dose pretty well and it didn't decrease his blood counts.  We're praying that this works.

December 7, 2004 - It has been about 6 weeks from my last post.  Quite a few events occurred since then; but unfortunately not all the news has been good.  Alex had his MRI in November and the tumors increased in size.  The tumors are still not causing any acute problems (pain, dizziness, etc). He as immediately taken off the Depocyt because it failed.  We were advised that after two treatments, there should have been a reduction, or at least a stabilization of the tumors. Alex was put back on the Celebrex and Cyclophosphamide.  This is pretty much a holding pattern until his next MRI in late December.  We've already discussed with the oncologist the option of having a medi-port surgically implanted in his chest once again.  Alex had one during his initial treatment and after almost 2 years, it was removed.  I remember how happy he was to get it removed.  The need for another medi-port is to have more options regarding chemotherapy drugs.  The chemo agents are placed directly (via IV) into the medi-port.  Additionally, most of Alex's veins are in poor shape from the years of blood tests. We haven't mentioned the medi-port to Alex as of yet. I know that it will make him very upset.  We've also been researching any and all possible clinical trials for Alex. I'm still hoping to one day come across the clinical trial that will cure him.  It is this dream that keeps me going. Other than this latest crisis, Alex continues to do well at school.  He also needs to see his neurologist this week for a check-up.  Since his seizure episodes, he is still on Keppra, and it has worked.  Alex's Cystic Fibrosis has also been under control.  He takes daily doses of antibiotics, and it appears that this is able to keep it under control. 

January 3, 2005 -  Alex had a good holiday.  He even told us how good it was because he was able to be home, and not in a hospital.  Since the last update, Alex went to see the neurologist, pulmonary physician and oncologist. No major changes have occurred.  Alex had his MRI on Wednesday, December 29.  The MRIs were read by the radiologist and the report was faxed to the oncologist.  We learned this evening from the oncologist's office that the fax was somehow lost.  We will now wait another day to find out the results.  It is so difficult to think of anything but what is contained in the MRI report.  Please God, let Alex show some improvement.

January 4, 2005 - We received the results from Alex's MRI.  We were told that there was "minimal growth" of the tumors.  The oncologist considers this good news since there was aggressive growth apparent on the last MRIs. We agree that this is good news.  Alex's regimen of Celebrex and Cyclophosphamide appear to be working.  We have an appointment next week with the oncologist.  Thank God for the latest results.  We were on edge during the holidays, wondering what the MRI would show.

March 6, 2005 - Alex's life has been pretty tranquil since the last update.  He has seen his oncologist and the next MRI will be the end of March.  Alex can wait that long because he does not show any signs of the tumors causing side effects.  Alex is still on the same chemo regimen.  His CF has been acting up; he has been getting sinus infections.  Alex will see his pulmonary specialist this week.  He is also due to have his vision checked this week.  Alex has been in pretty good spirits.  When he is happy, we're happy!

March 22, 2005 - Alex will have his next MRI on Monday, March 28.  He will see his oncologist on Wednesday, March 30.  There is always anxiety leading up to the MRI.  We've gone almost 3 months since the last MRI.  For the last week or so, Alex has been complaining of the "shivers".  Suddenly, he will feel very cold.  He has been getting about two of the episodes per day.  They only last a few minutes.  Alex went to see his pulmonary specialist last week. He is back on an antibiotic since he can't seem to rid himself of a persistent sinus infection. We're looking forward to a quiet and uneventful holiday.  Please check the "photos" page.  I've added a few recent photos of Alex and Madison.

May 9, 2005 - This has been a difficult period since the last update.  Unfortunately, Alex's last MRI in March was not good.  The tumors have multiplied and have grown larger.  Alex was started on Temodar and finished his second cycle yesterday.  Fortunately, he does not show any signs of the tumors spreading.  If it were not for the MRIs, we would never have known the seriousness of Alex's condition.  He has been going to school (except when he is on the Temodar), and hasn't had any complaints.  His physicians have been preparing us for the worst, but it has been almost 6 weeks from that dreadful MRI, and Alex has been acting fine.  I realize the seriousness of Alex's condition, but I refuse to give up.  I've had Alex's case reviewed by NCI, St. Jude's and I'm waiting to hear from MD Anderson.  So far, everyone is in agreement with Alex's diagnosis, but they also agree with the Temodar.  I have to keep praying and researching on Alex's behalf.  I still believe there is a cure somewhere.  In addition to the above news, Alex's Cystic Fibrosis has also been causing him some discomfort.  His physician has been trying different antibiotics to control it.  Alex was also on steroids for a period, and it appeared to help.  Additionally, I've been in contact with a nutritionist who specializes in cancer patients.  After reviewing Alex's case, vitamins and supplements have been suggested that will assist in Alex's battle.  We will start giving them to Alex this week.

June 13, 2005 - We finally have some good news!  Alex had an MRI last week and we received the results.  The tumors have shrunk a little in size.  The tumors are still there, but there has been a noticeable decrease. We were just hoping that the growth would slow down, so this is really significant.  After two rounds of the Temodar, we finally have seen some decrease in size.  This is the first decrease since Alex's recurrence in March 2002.  Alex started his third round of Temodar on Friday, June 11. The only side effects have been low blood counts.  Alex needed a transfusion last week.  He is now back to his "perky" self.  In early April, the physicians were preparing us for the end, but Alex has battled back.  All of the many prayers are working.

July 12, 2005 - Alex just finished his second round of Temodar since the last update.  He will get another MRI in the beginning of August.  His spirits have been good.  He enjoyed his birthday (July 3 - 10 years old!) and is spending his time off from school doing his favorite things; playstation, computer games, and watching videos. Alex is back on daily antibiotics to help control his cystic fibrosis.  His chronic sinus infection is causing him some discomfort (coughing, congestion). 

August 4, 2005 - Alex had an MRI yesterday and we went to see the oncologist today to discuss the results.  We received encouraging news!  The tumors have appeared to shrunk a little in size once again! This is really good to hear since the Temodar does appear to be working.   His blood counts also came back today and he will be able to start his next 5-day round of Temodar tonight.  The MRI also revealed that Alex has severe sinusitis. This is most likely caused by the cystic fibrosis.  He hasn't been showing any signs of discomfort because of it.  He does have an appointment to see the pulmonary specialist on Tuesday, August 9. 

October 8, 2005 -  Alex has been on his rounds of Temodar.  He has been getting pretty tired when is on this drug.  Luckily, his blood counts have been okay.  His next MRI is scheduled for October 17 & 26.  He needs to have it over two days because this one will be of the brain and spine.  We split it up so that Alex will not have to spend many hours in the MRI machine.  The anxiety starts as we pray the Temodar continues to work.  Alex has been doing pretty well; not really complaining of any discomforts.  His weight is still an issue as he is only 50lbs.  He is such a finicky eater.  Fast food chicken nuggets is the mainstay of his diet. Alex is also still on daily antibiotics to control his cystic fibrosis.  This plus his daily respiratory therapy has been keeping the disease stable.  This past July, Alex was Junior Grand Marshall of the annual Randolph Township Fourth of July Parade.  The photos of the parade, including a few of Alex riding in the parade, are now on the Randolph Township web site.  Please click here to view.

October 29, 2005 - Alex had his MRI and there is a difference of opinion regarding the results.  On Wednesday afternoon immediately after the MRI in Morristown, I drove the films to New Brunswick for review by the oncologist.  Unfortunately, the oncologist left for a conference to Seattle on Thursday before reviewing the films.  Another oncologist reviewed and advised us one of the tumors in the area of the ventricle has increased by 25%.  He suggested that we not give the Temodar (we were supposed to start it on Wednesday) until he can speak to Alex's oncologist. On Thursday, the radiologist in Morristown reviewed the films and faxed the report to the oncologist.  The report states "that there is no growth".  Basically everything is stable.  We are now supposed to have a phone conference with the oncologist on Monday afternoon to determine what we're going to do.  This is not the first time that there has been a disagreement between what was observed on the films.  So as of now Alex is not receiving his chemo, and we're not sure if there is growth or not.  Add to this the fact that the physicians are not totally accessible and able to give any answers.  Just another weekend in hell!!!

November 2, 2005 - We met with the oncologist and their diagnosis of a 25% increase in the left ventricle tumor still stands.  Thus, Alex has had his chemo regimen changed to 40mg of Temodar daily for 21 days and 5 days off.  We will repeat this twice and then have another MRI.  Alex has been clinically well, but has started to vomit.  He may be catching something because he just started to complain of a sore throat.  I'm praying the vomiting has nothing to do with the tumor growth.  The oncologist advised that when the tumor starts to get larger in the ventricle, Alex could start experiencing headaches, vomiting, etc.  Alex just needs a break; God please help him

November 10, 2005 - This has been a busy week for Alex.  On Tuesday, he went for a check up with the pulmonary specialist.  Alex's lungs were clear but he still has persistent congestion. He continues to take a daily antibiotic.  He is currently on his 21 day regimen of Temodar.  He also missed some school because of a virus, and then a cold.  On Tuesday evening, Alex gave us a scare.  While helping him with his homework, Alex was repeating his spelling words.  Suddenly, he stopped responding, became very stiff in the chair, and started mumbling. We picked him up, and within a minute he snapped out of it.  He cried a little because he didn't know what happened, nor could he explain what happened.  He did tell us that it didn't feel like the seizures he experienced 2 years ago.  He was fine for the rest of the evening.  We took him on Wednesday to the oncologist for an examination.  We were advised that the episode could of been caused by the steroids Alex has been on since Sunday, or by an inner ear infection, or his sugar level may have dropped.  The oncologist didn't notice anything wrong except that Alex looks very tired and weak.  If any additional episodes occur, we will need to return on Monday for a CAT scan.  So far, he has been okay. His appetite has picked up and he has been resting.

November 14 , 2005 - Alex stayed home from school today.  He was extremely fatigued and slept most of the day.  I've never seen him this tired.  He has eaten a few times, but will not leave the bed except to go to the bathroom.  We're not sure if this is from the chemo or something else.  I think he is also depressed.  How much illness can one little kid take? He is still getting the "shivers"; about once an hour.  Alex will see his oncologist on Wednesday for blood work. 

November 17, 2005 -  Alex went to the oncologist yesterday.  We were hoping to get an answer regarding his constant tiredness and chills.  His blood work came back normal so that didn't offer any clues.  The oncologist advised that Alex may have the start of hydrocephalus, brought on by the increase in size of the tumor located in his ventricle. If this is the case, Alex would need to have a shunt surgically implanted.  We were supposed to watch him today (Thursday) and call the oncologist's office on Friday if we saw any change in his behavior.  Actually today, he appeared a little better, but still seems to be more tired than usual.  We made an appointment for a CAT scan next Tuesday to find out if the ventricle is being obstructed.  Sometimes you have to be proactive and perform the diagnosis yourself.  If he does need a shunt, the procedure would be performed at Robert Wood Johnson.  We have an appointment with the oncologist next Wednesday, so it looks like we will have to wait again to find out what is going on.  Hopefully, Alex's discomfort and spirits will improve.  He certainly deserves a break.

November 25, 2005 - On Wednesday, I traveled to New Brunswick with a copy of the CAT scan to meet with the oncologist.  Alex stayed home since he was still feeling weak.  The meeting wasn't very encouraging.  There was no change between the CAT scan and the last MRI.  Alex doesn't have hydrocephalus.  That was the positive news.  The oncologist believes that Alex's fatigue is due to the effects of the chemo and radiation that Alex has endured over the last 6+ years.  He was not very positive regarding Alex's future.  I do not believe the oncologist's diagnosis.  Thus, we asked (demanded) to give Alex a break from the chemotherapy.  Alex's latest episode of extreme fatigue began one week (of a three week cycle) of chemo.  His last dose was this past Tuesday.  We also asked that Alex be given a steroid again.  He is currently on 6mgs daily of dexamethasone. Already he has been improving each day, becoming more alert, active and more like the Alex we're used to.  Alex will also start taking  homeopathic supplements in addition to his chemo.  His oncologist really doesn't support the homeopathic supplements.  However, from what I've studied, most oncologists are ignorant to anything other than the mainstream chemotherapies.  If Alex continues to show improvement regarding his energy levels, we will look to introduce the chemo within the next week.  At this point, we may start to look for another place to treat Alex.  After 6+ years of treatments, I can no longer tolerate any "doom and gloom" diagnoses from the very professionals that we are looking to for hope. Alex is a fighter, and we will continue the good fight.

December 2, 2005 - Last night at about 6:00pm, Alex was taken by ambulance to Morris town Memorial Hospital.  He was at home, and had a seizure.  He also had another seizure when he arrived at the emergency room.  He was admitted, and a CAT scan was done at 2:00am this morning.  The results showed that there has not been any change since the CAT scan of last week or the MRI from October.  The seizures, we are told, are probably related to the way Alex has been feeling the last 3 weeks.  He may have also had "mini" seizures during this time. An EEG is also scheduled for later today. If the physicians at Morristown Memorial cannot determine the cause, or if the seizures continue, he will need to be transported to Robert Wood Johnson.  Right now, Alex is comfortable, but a bit groggy from not sleeping because of the overnight tests, and the larger doses of anti-seizure medication he has been given.  He is still cranky about drawing blood and is not scared to tell the nurse how he feels.  This is a good sign.

December 28, 2005 - Our Alex passed away on Wednesday, December 21, 2005 at approximately 11:10pm.  He had slipped into a coma earlier in the day.  It was a long road from when I posted last.  Alex was initially at Morristown Memorial where physicians tried to control a sodium problem that developed because of the tumor's progression.  The drop in sodium levels caused Alex to have seizures.  The sodium problem also kept Alex from qualifying for a clinical trial at the National Cancer Institute.  This was one of our hopes that Alex could be treated at NCI.  Additionally, Alex became weaker and was not interested in any of his usual things.  We did contact the Children's Hospital in Philadelphia and were told that Alex would be qualified for one of their clinical trials. Alex was transported via ambulance to CHOP.  Once there, the oncologists changed their minds and told us that Alex was not qualified for any of their trials.  We were there for less than 24 hours.  I will be writing letters and making phone calls regarding the unprofessional methods of the CHOP staff.  We then made the decision to transport Alex to Robert Wood Johnson.  This was after I spoke to Dr. Kamen and advised him of our dire need.  Dr. Kamen sent an ambulance to transport Alex.  This was on Tuesday, December 20. 

I cannot even begin to describe how much I miss Alex.  If only I had a medical background so that I could better understand everything that was done to Alex.  He struggled so much just to make it to 10 years old.  I'll forever feel that I could have done more to save his life.

January 2, 2006 -  Alex's lettering, cameo photo, and 4 medallions (2 angels, a "beloved son" and a "beloved brother") have been ordered for his crypt.  I get angry because I start to think that I should be buying him toys instead of shopping in a mausoleum.  I've been thinking of what the oncologist told us in the days before Alex's passing.  At the time, Alex's symptoms were being attributed to the spread of the disease, and the late effects of his earlier radiation.  We were told that the large amounts of radiation that Alex received during his first treatment in 1999, (which was the standard treatment) had started to negatively effect his brain.  Unfortunately, we were not advised of this in 1999.  I can't help but think of what we put him through, and all of it was on the advice of his physicians. 

The above is a tribute the Randolph Chemical Engine Company #2 did for Alex.  It was so beautiful.  We can never thank the members of Engine Company #2 enough for everything they did for Alex, and our family.  They are truly a remarkable group of people. The procession on the day of the funeral had all of our family choked up with emotion.  There were police cars from the Morris County Sheriff's Department, Essex County Sheriff's Department, Randolph, and East Hanover.  Hanover Township and Morristown also assisted.  The flowers from the wake were placed on a fire truck that was also in the procession.  All of the members of these departments worked so hard that day, and their display of respect and admiration for Alex made us all cry. Another showing of compassion were when the members of Chemical Engine #2 and the East Hanover Police Department came to Alex's wake in uniform to pay their respects.  I know that Alex was looking down and was impressed.

January 8, 2006 - I can't help but think about all the times that I would try to reassure Alex that all the pain he was enduring was so that he could get better.  All of the procedures (operations, radiation, chemo, needles, tests, etc.) that would cause him discomfort, and I would be there to tell him that it would be okay, because it would make him better.  In the end, I lied to him and I lied to myself.  I though that all the pain and discomfort he was experiencing was someday going to end, and he would live a long life.  I was wrong.

January 9, 2006 - The following poem was composed by Laura Byrne of Randolph.  It is titled "Alex" and is so beautiful.  We had it read at Alex's funeral Mass.

Alex

It was just after preschool

A second child due at any time

The Detore family was told

little Alex had a huge hill to climb

And climb that hill he did

with our community by his side

we marveled and watched him in awe

as Alex braved quite a bumpy ride

His parents and sister beside him

offering him optimism and strength

you could see how their love supported him

which gave Alex his drive to fight at length

His determination to live his life

like any other kid at school

was an inspiration to our children

who learned to believe in themselves as a rule

But sweet little Alex grew tired

as Jesus' birthday grew near

God chose him as His son's gift

an angel that He will hold dear

January 22, 2006 - Still trying to cope with the loss of Alex.  Most days are not good; others are worse.  I found the following passage in "Our Daily Bread" under Wednesday, December 21, 2005, the day Alex passed away.  The booklet was given to me by a co-worker and I was thumbing through it the other day.  The passage is as follows:  I have fought the good fight, I have finished the race, I have kept the faith. -2 Timothy 4:7.  This truly states Alex's struggle, and it is almost unbelievable that this passage was the entry for December 21.

January 29, 2006 - It has been a pretty depressing weekend.  I've been told that time is supposed to heal but not with me.  On Friday, three teachers from Center Grove School visited and brought a box containing Alex's school items.  I'm glad we have the items but we haven't had the courage to go through the box.  We placed it in his room.  The Randolph Township Boys Basketball Program has dedicated their 2005-2006 to Alex.  Please visit their site at www.randolphhoops.org.  We thank them for honoring Alex. 

February 19, 2006 - I've been sorting through Alex's school work from the fourth grade.  Here are some of his postings to his journal:

09/07/05 - "My summer was great.  I went to Canada.  We stayed 4 nights.  I went to a special church.  The food was great". (We traveled to a shrine in Quebec, hoping for a miracle).

09/12/05 - "My family is four people".

10/17/05 - "At the fair we raised $636.00 for Alex's Lemonade Stand".

10/24/05 - "A luxury I enjoy is going to the movies.  It is a luxury because I get to go when I've had a good week and I feel well".

10/25/05 - "My favorite part of a rainy day is playing video games and watching TV". (This was the last posting).

It has been almost two months and it is still so difficult. Valentine's Day was especially difficult, as I imagine all of the holidays will be without Alex.

March 13, 2006 - Time really hasn't started to heal any of us.  Some days are worse than others.  I was going through my collection of "cancer" books over the weekend.  I'm going to list the titles.  If anyone is interested in any of the books, please e-mail me and I'll mail them to you.  They are as follows:

Magic Cancer Bullet by Daniel Vasella, MD

Cancer Therapy, "The Independent Consumer's Guide to Non-Toxic Treatment & Prevention" by Ralph Moss, PhD

One Renegade Cell, "How Cancer Begins", by Robert Weinberg

Curing Cancer, "The Story of the Men and Women Unlocking the Secrets of Our Deadliest Illness" by Michael Waldholz

Racing to the Beginning of the Road, "The Search for the Origin of Cancer", by Robert Weinberg

Here are two other books that may be of interest:

Faith, Healing & Miracles by Frederic Flach, MD

Prayer Works by Rosemary Ellen Guiley

Please e-mail me if you're interested.  Hopefully these books can be helpful to someone.

March 31, 2006 - I've been looking into local bereavement groups.  Maybe it is time to join one. The pain has not eased, nor my acceptance of losing Alex.  We've gone from having hope to now trying to cope.   Here is a photograph of Alex and Madison taken in the summer of 2004.  As I sort through photos, I'll be posting them on the Photo page. 

May 28, 2006 - It has been almost two months since my last post.  I can honestly say that time has not healed my broken heart.  Each holiday so far (Easter, Mother's Day, Memorial Day) has been a very somber and grief filled event.  A few weeks ago, we met with the Physician in Chief of Children's Hospital of Philadelphia, along with the two physicians responsible for Alex's care. I was seeking to find out what happened during Alex's final days.  The meeting shed light on Alex's condition.  By the time Alex arrived in Philadelphia, from Morristown Memorial, the cancer was already in a very advanced state.  At that point, nothing would have saved him.  I can't help but to blame myself for not pushing harder to have Alex transported from Morristown sooner.  They were not equipped to deal with Alex's type of cancer.  It (the cancer) just spread so fast, after being controlled for 3+ years since his recurrence.  I look back and see how we used to take his ability to recover almost for granted.  He always looked good, and would bounce back.  It just hurts so much that maybe something could have been done.  I'll never know.

I've added some photos below of flowers.  Alex always loved flowers, and would pick them for his mother from the yard.  This year for the first time, there have been at least 100 Pansies (I think that is what they are) growing wild around our yard.  Since the beginning of Spring, whenever they sprouted up, I would replant them in pots. Like Alex, they were small and fragile, but they have bloomed into something beautiful. 

The following is a poem that Alex composed last fall while still in school.  It was recently published in the Center Grove School's collection of poems and essays composed by all of the talented students.  It is as follows:

Mums so colorful and pretty

Up above the leaves fall

Many mums are blooming

Sprouting buds so beautiful.

Alex always enjoyed flowers, and his appreciation of their beauty continues.

July 3, 2006 - Today is Alex's birthday.  He would have been eleven years old.  We will be celebrating his birthday; hopefully he will be smiling down on us from heaven.  I've found some additional photos that are posted below.  In the photos with Alex and Madison, the bond between the two of them is so evident. 

September 5, 2006 - We received the "Rays of Hope" newsletter a few days ago. It is published by The Institute for Children in New Brunswick.  There was a remembrance written about Alex.  It is as follows:

We met Alex for the first time in March 2002.  Alex was a very handsome, calm little boy who had just finished treatment in December 2000 for medulloblastoma, a brain tumor.  Alex's parents had taken him to New York when he experienced his first symptoms when he was four years old and he was operated on by the world famous Dr. Fred Epstein at Beth Israel.  Alex and his family traveled back and forth to NY for his initial  therapy and on top of that, they had a brand new baby girl by the name of Madison.  Unfortunately, Alex's tumor did recur and his parents, John and Patti, were investigating what Dr. Kamen had to offer.  As became the norm, Alex brought along his grandpa (note: actually his Uncle Pat) to ask questions and support his parents.  As it turned out, Alex was actually now fighting two illnesses; his recurring brain tumor and cystic fibrosis.

Alex was a quiet little boy unless you were able to get him alone and then you found a very bright, insightful child.  He was always so brave throughout the various treatments given to him.  He had an amazing ability  to endure much with little outward signs.  He always seemed to look good despite how he was feeling.

Alex loved school and everyone loved him.  When our counselor went to Alex's school to meet with the staff at Center Grove Elementary School, she was absolutely amazed at how many staff members attended the meeting.  It was a little Elementary School with a "Big Heart".  All they wanted to do was Alex's time in school the most happy and productive time possible. Alex, like most children, just wanted normalcy.  He just wanted to go to school, play with his sister, Madison, and hang out with the Randolph Fire Company.  He was actually a Junior Firefighter.  Quite an honor and quite a treat for a little boy!  Alex also liked watching movies, writing and coloring.

Alex died in Bristol-Myers Squibb Children's Hospital, surrounded by his loving family.  He is missed by his family and all who knew him.

October 18, 2006 - As Halloween is approaching, we can only think back to last year when Alex's health started to decline. Every holiday brings more sadness, despair, and anger that Alex is no longer physically with us.  Many times, I still can't believe his fight is over.  How did we get from having hope that Alex would survive, to having hope that we will see him again?  I can't help but think of all the things that we still had to do together.  The last veeks of his life play over and over again as I try to remember what decisions were made, and if we overlooked something that could have been done.

November 11, 2006 - On Wednesday, November 8th, a memorial was held at Center Grove School to dedicate a plaque of Alex on the new Board of Education building.  Mrs. Iosso,  principal of Center Grove led the dedication. Attending were Alex's teachers, members of the Board of Ed and Center Grove School, members of the Randolph council, police, fire, rescue and municipal departments. It was very touching to see everyone in attendance for the dedication.  Randolph Township citizens, leaders and employees continue to touch our hearts with their caring and love of Alex.

November 23, 2006 - It is hard to believe that a year has gone by since last Thanksgiving.  That was Alex's last holiday with us.  He was already not feeling well but he sat at the table and joined us for our Thanksgiving dinner. I also remember going to 3 different food places on that day to get Alex chicken nuggets.  He loved his Burger King, KFC, McDonald's & Wendy's chicken nuggets.  It was a somber holiday without him.

December 21, 2006 - It is hard to believe that Alex has been gone for a year.  It is still difficult to understand why he had to leave. He should still be here and looking forward to the holidays.  Alex loved Christmas and would decorate his own tree each year.  He would choose his own ornaments and take pride in his tree.  Madison wanted to know if "Santa would bring Alex's gifts to the house, or to heaven".  He is missed so much. 

February 20, 2007 - On Saturday, February 17, we were the guests of the Randolph Fire Department, Company #2 at their annual Ladies' Night. During the event,  we were presented with an official Randolph Fire Department Helmet, with Alex's number, 227.  The dedication was very heartwarming and emotional.  Alex's number "227" will also be retired.  We are so honored and privileged to have Alex remembered by Company #2.  The members of Company #2 and their families will always have a special place in our hearts. I know that Alex is somewhere smiling because he always told us he wanted to be a fireman and a policeman.