David's Story

Burkitt’s Lymphoma : Characterized by the fastest growing malignancy known in the human body. Usually presented in this country as an abdominal mass. The "African Burkitt's" is so named because it was first identified and treated in parts of Africa and is characterized by the tumor being located in the jaw or sinus region. A few years ago this cancer was 100% fatal with a survival rate of only a few months. The researcher in Africa (Burkitt) who came up with what is now the most successful treatment for this tumor began his treatments in the region of Africa that exhibited this unusual presentation. It has been discovered that a very large percentage of patients with this presentation show evidence of having been infected with the Epstein Barr virus.  Our son was a VERY rare case not only because he lived in North America but he also had no EB involvement.

 Our History

In late February or early March of 2000 David came down with a virus of some type that exhibited a low fever, rash, and general sick feeling. It lasted about 48 hours. Days later he came to us to tell us that his teeth felt loose and did we "want him to go ahead and pull them out?" We examined the area he indicated, made sure the teeth didnít wobble, and promptly told him ìabsolutely not!î as these teeth were his permanent teeth. We checked them out and since he had been to the dentist the week before we assumed that he was still feeling the effects of his teeth cleaning. We never heard him mention his teeth again.

Over the next several weeks we took him to the doctor several times for what the doctors had determined were eye and ear infections. During this time he was put on several courses of antibiotics. After days of these ineffective treatments I took a look in his mouth again (something jogged my memory about his tooth complaints of a few weeks before) and noticed that his palate and gums appeared to be inflamed and sore (even though he claimed that he felt no pain). I told Sherry that I thought he had some sort of gum infection. She called the doctor and informed them that we were going to take him to the dentist.

The next day we went to our family dentist. Upon one look in David’s mouth and noticing the palate, discolored gum,  and several loose teeth he immediately called a periodontist and got him an immediate appointment. Upon examination at the periodontist he was suspected of having an unusually severe gum infection and given two different courses of strong antibiotics to take at the same time. He also told us to watch him carefully and that we should see a marked improvement within 48 hours or we should call him back and possibly take him to the hospital. This doctor also called us twice a day over the next two days to see how he was doing. On the second day, Saturday, Sherry had to go somewhere and David and I decided to hang around the house. He kept insisting that he felt fine although we all had a hard time believing he had no pain. According to the dentists he had several teeth that he might lose they were so loose.  He appeared to be feeling well and his gum didn’t look so red. Later that afternoon when Sherry came home David got up from the couch (after watching cartoons all morning) and Sherry noticed a change that I didn’t, since for me it had been a gradual difference. One of his eyes appeared to be protruding slightly. We immediately called the periodontist and his instructions were to take him to the emergency room at Children’s Hospital.

Now David’s older brother had been through significant hospitalization 5 years earlier (leukemia) and it was quite a task to convince David to cooperate as the hospital was a frightening place to him. He had seen the anxiety and worry hospitals had caused in the family. We had to practically drag him to the car. We arrived at the hospital in the early evening and were given an examination room and a resident to look him over. When the resident went for the attending physician we became even more worried than we already were. The on the spot guess diagnosis was that this may be a pus pocket putting pressure on the eye from the supposed infection he was being treated for. We were put on the waiting list for a CT scan.

Unfortunately the CT rooms at Children’s on a spring weekend night are a very busy place and we kept getting bumped for what were termed more emergent cases. Our  resident kept calling radiology and insisting they get us in there but it wasn’t until after 11 in the evening that finally we were called to go upstairs.

I accompanied David to the CT room and the technician left the door open a crack as the test was performed. Being the curious sort that I am I peered through the door and watched over her shoulder as the scans came up on the screen.  It was very interesting to see these scans and I noticed that behind the eye on one side of his face it appeared to be gray while on the other side there was a black spot. That black spot is the infection, I said to myself. Little did I know that I had it exactly backwards. The technician shortly went into another room to get the radiologist and when he came into the room he closed the door and ended my amateur radiologist career.  Several minutes later an aid came to pick David up and move him upstairs to admit him. Of course he was extremely hungry, (it was now after 1 a.m.), feeling no pain, and wanted desperately to go home. We provided him with some food and shortly thereafter an on call doctor and a nurse came to our room and asked us to follow them to a conference room down the hall.

Now this unfortunately put us both on extreme alert as we had been through one of these conference room talks before with our other son Steven. It was explained to us that the CT scan showed a soft tissue mass in his sinus cavity. There was no determination as to what that mass was, except that it did not appear to be an infection. We were informed that he would be scheduled for a biopsy of the area to make that determination. Later that night I was on the internet using search engines to find documents that contained the words (soft-tissue-mass-sinus). Well, I can tell you that when you look for these words, what you find can be pretty scary, and most of them contain the word malignant. Within a couple of hours I had my lists made of what I prayed it would and would not be. We would find out Monday morning after the biopsy.
 

Biopsy

Upon arrival at surgery we were met by the doctor that was to do the biopsy. He immediately began  informing us that he had seen many scans like our son's and that this was likely a rhabdomyleosarcoma. I had read about this tumor and it was at the top of my "please don’t let it be this" list. The doctor then proceeded to say things to the effect of "you will need to be prepared for what this will bring" and other things to the effect of "getting your affairs in order, etc.". He then left us to our thoughts and headed into the operating area.

I cannot even begin to describe to you (unless you have ever had the misfortune to experience it) the feeling of looking at the imminent likely death of your young child. There is no horror or despair that I can even begin to compare it to. I walked out into the hallway outside of the waiting room and saw an old friend coming down the hall. Dr. Michael Wollman who was our middle son Steven’s oncologist. He saw me at the same time and walked up to me as I started to explain that we had another son that likely had cancer and would he PLEASE accept him as a patient as well. He informed me that they had already had a meeting that morning about David and certainly they were going to work with us.

An interesting thing happened as I started to relate what the surgeon had just told us. He got this very thoughtful look on his face and said (I will paraphrase here as I want to be nice) "I am the oncologist, the expert in this field. He is making a determination based upon what he saw (the CT scan) and what he usually sees as a result of that scan. I think we are dealing with a lymphoma here. I am not absolutely sure, but if it is what I suspect, we are looking at something that is very treatable. Hang in there, I will let you know when I find out more". I will tell you now that I NEVER thought that I would pray for my son to have lymphoma, but from that moment, that is what I did. I was never as thankful to know someone such as Dr. Wollman as I was that day.

Later that day, Dr. Wollman informed us that after preliminary looks through the microscope he was better than 90% sure that it was lymphoma (although we didn’t find out for certain for several days after cell studies confirmed it). I never did see the surgeon that did the biopsy again, when it came time to remove the bandages he sent another doctor down to take care of it. I  suppose, in hindsight, it was a good thing that I didn’t see him.

Burkitt’s lymphoma with this particular presentation in the head cavities is a very rare occurrence in this country. With the arrival of the information on David’s history and CT the Doctors of the oncology unit had to do considerable research to make this diagnosis. I can’t imagine what likely would have been the result if we had gone to a smaller regional hospital where they have NEVER seen a case of this and would have probably misdiagnosed it. When you are dealing with the fastest growing malignancy in the human body you donít want to waste time.

The Treatment

As soon as biopsy was over the doctor had ordered a regimen of chemotherapy drugs to begin. It was explained to us that since this was lymphoma, chemo therapy, not surgery or radiotherapy, was the treatment of choice. Because this malignancy grows so fast the tumor cells are very susceptible to chemotherapy. This treatment would likely melt away the tumor and his teeth would even reattach themselves. Over the next several days we had opthamologists taking photos of his eyes and many groups of residents being lectured on how to diagnose this particular cancer in their patients. This is a rare form of cancer and is often misdiagnosed.

A doctor has to look at the combination of clues (such as loose teeth, the lack of any pain, swollen eyelid etc.) to put the case together. Treating individual symptoms will almost always miss the cause. Most doctors will never see a case of Burkitt’s although its incidence is on the rise in this country. The treatment for this type of lymphoma has slightly better odds than the leukemia we dealt with for Steven but we were warned that although the amount of treatment time (6 months) was significantly shorter David was going to be MUCH sicker and require hospitalization for all of them. Some of the doses of drugs were going to be a thousand times the dose that Steven had over his 3 years of treatment (much of which he was able to take at home).

Within hours of this first (relatively low dose) of starter chemo David’s urine showed a significant change that showed that the drugs were being effective in dissolving the tumor. Within 48 hours most of the swelling behind the eye was gone and his palate had started to resume its normal color. The doctors explained that the discoloration of his gum and palate were due to the fact that you could actually see the tumor coming out from above his teeth and showing through the roof of his mouth. It would have been fascinating if it hadn’t been so personal.

The first 10 days of treatment in the hospital included:

 1.    a bone marrow aspiration to determine the extent of the spread of disease. This is a very painful procedure consisting of a metal tube that is shoved into your hip bone and the drawing out of the marrow. This causes severe leg pain. Why is it that the doctors and nurses in the hospital never acknowledge the term "pain" when they are about to inflict it? It is only "pain" when they are going to help it go away. When they are inflicting it is called "pressure" or "a slight pinch". I wonder if it is not only for the patient's ease, but also for their peace of mind? Who would want a job that would entail inflicting "pain" upon little children every hour of the day?

 2.    several spinal taps in order to determine cerebral involvement and to administer chemo to the spinal fluid just in case there is central nervous system involvement. This tumor had already begun to dissolve the bone between the orbit of his eye and his brain.

 3.    Several combinations of drugs given at heavy doses according to a strict time  schedule so that as soon as your body recovers from one, they can hit you again before the cells have a chance to recover. A "hit'em while their down" strategy.

The patient is awake during all of these. There is a drug they use that makes them act almost drunk and has a neat side effect.  You still feel pain (there is no way to get around that) but you suffer amnesia. In effect, you know something happened, you are just not sure what. Unfortunately David, like his brother Steven, showed the unusual ability to grow resistant to this. After a few spinals it was like being wide awake during these procedures.  David also had the ability to tighten up so much (even under these drugs) that the spot they need to hit for the spinal was hard to hit. I remember one particular spinal in which his back got poked with the needle several times resulting in several puncture holes and numerous Band-Aids. Each puncture brought a scream, a struggle and crying. Sometimes if they didn’t get any fluid they would just poke it in further. I was in the room for each of these and after each time I had to go somewhere to be alone. Eventually the doctors (as they did with his brother Steven) had to resort to sending him to radiology so they could use the fluoroscope to find the spot and just puncture him one time. Most children don’t give the problems mine did. I hope it was just their will to live that was trying to protect them from the pain and sedation and not some inborn tendency to cause problems (inherited from Dad of course). The downside to the last few spinals was that I was not able to be in the radiology room with him although I could certainly hear (even from down the hall) that he was making his presence known. The upside was that a few technicians and nurses quickly found out what it was like to try and hold down a Traugh when he wanted to be free.  I don’t think they believed me when I tried to tell them that he was resistant to the 3 different drugs they had been using to try and sedate him (although he always gave in a slept with wild abandon after the procedure). With Steven they eventually just gave up and administered general anesthesia. With David they kept trying sedation and got to experience the full effect of that will to stay awake.

Over the six months of treatment David received:

 approximately 16 awake spinal taps (many more ineffective attempts)
 One bone marrow aspiration
 Many CT scans and MRI’s
 Enough poison administered through IV to kill most of the Dinosaurs that   lived on the North American Continent (with only slight artistic exaggeration)
 a lot of food that didn’t want to stay food
 A semi permanent puffy prednisone look (it is slowly receding)
 A first name friendly relationship with many Doctors and nurses on 8th floor
 Several surgeries and weird events:
 

Stories of the unusual, strangely significant and weird:

I should tell you about some of those:

Before David’s first biopsy (while I was still driving to the hospital after spending the night with our other children) David turned to his mom and asked

"Mom, am I going to die?"

Somehow he had sensed the situation and totally caught his mom off guard.

One of the more interesting events that happens to parents in the oncology unit is the signing of the papers. We always have a tendency to think that medicines that make you better are good things and we rarely ever read those cautions such as on the side of the aspirin bottle. The papers are a description of the treatments your child will be receiving and all of the possible side effects. These can include heart damage, sterility, nausea, weight gain, weight loss, all sorts of impairments and even death. One of the most interesting however is that the chemo therapy itself can cause cancers such as leukemia. Since we had been through this before we just shook our heads and put our names on the line. After all, what choice did we have?
The first time (with Steven) we actually agonized over the decision until we realized that this was the best treatment available (in spite of the risks). It is also disconcerting to read that your child is part of a study in which there are two different courses of treatment and you will be randomized as to which course you will get.

The biopsy itself was relatively uneventful. After the surgery (which probed up hrough the right nostril into his sinuses) the doctor informed us that he had “a little bit” of gauze in his nose as a packing and not to worry too much about bleeding “he might even sneeze it out”. Days later he was worried because a friend was coming to visit him and he didn’t want that unsightly glob of ooey gooey gauze hanging out of his nose. As his knight in shining armor I took it upon myself to make it my quest to raise a little bit of ruckus for my son and demand that those doctors get down here and take the "little bit" of gauze out. After all, the doctor said he might sneeze it out in a couple of days and here we were a week later and it was still hanging there. After several hours of waiting I started on my way upstairs to the ENT suite. As soon as I exited the elevator I ran into the resident that had been in to check on David the week after his biopsy. He did a double take and then he recognized me as David’s dad. We headed back to the room for the removal of the gauze packing. David had tried pulling on it himself earlier and complained that it hurt. (If you can imagine the number of instruments that went up that nostril all at the same time to accomplish that biopsy you can see why). I don’t know why he thought the doctor would be able to remove it painlessly. After squirting a bit  of saline on it the doctor began to pull. For the next 10 minutes this doctor pulled (as David whimpered and grabbed the sides of the bed). It turns out that this ìlittle bit of gauzeî that David might ìsneeze outî was about 6 feet long. We eventually got it out and David had his first visit from a friend without it.

During the second day after the biopsy we were informed that David would be getting a broviak inserted into his chest wall to administer his chemotherapy. It turns out that some of the chemo is so caustic that the smaller veins in the arms are unable to withstand it. A broviak is a “Y” shaped tube that goes under the skin of the chest and snake under the skin to his subclavian vein in his neck. This is a very thick and sturdy vein that is able to hand the stress of the chemo. That evening we started the heavy stuff. Mom decided to spend the first two nights with him while Dad went home to be with his brothers.

At some point during the second night David received a dose of chemo that made him very sick to his stomach. At this point he received a dose of anti nausea medication named Phenargen which is the most commonly used anti nausea medication. Not long after receiving this dose David suffered an allergic reaction that resulted in what they call a peripheral response. He became extremely agitated and his hands and fit began kicking and flailing about. He tried to free himself by yanking on his IV and tried to get out of bed. After several doses of antihistamine (and several nurses physically restraining him) he settled down and went back to sleep. This was one of those never forget nights for Sherry, I don’t think she likes to be reminded of this one.

The following night it was my turn to stay in his room with him. Everything went very well that evening. David slept, the nurses came in and administered his chemo thereapy at regular intervals all night long, and it was relatively quiet as we were in a private room. It is interesting to note that many of the real heavy hits of chemo were administered at night while he was sleeping. About 5 o’clock in the morning David woke up and had to go to the bathroom so we got him out of bed and back in with little problem. I went back to sleep and a few minutes later I heard David calling me. He said “Dad, my shirt is wet”. I woke up and went over to see what the problem was and his shirt was covered in this orange colored liquid that was the same stuff that was in the bag on the IV pole. I buzzed the nurses station and announced ‘Davidís IV has sprung a leak”. The nurse came back on and asked me to repeat that and before I had even finished the room was full of nurses with rubber gloves. This particular medication is very caustic and can cause burns and tissue damage. While they were trying to determine the problem they called for a portable x-ray machine. Meanwhile David’s eyes were the size of the wheels on his bed and my heart was pounding. Pretty soon the doctor on call arrived and there was hardly any room for us to move. It was later determined that the broviak had popped loose from his sub clavian vein and had administered the last ounce or so of his chemo into his chest wall. They packed his chest in ice and watched him very carefully the next few days. David suffered no ill effects from this and they determined that since the broviak was new that the chemo just channeled itself right down along side the tube under his skin and came out the stitches in his chest. Nevertheless by this time Sherry and I had determined that no matter how much time David was going to be in the hospital, one of us was always going to be with him.

David’s 3rd surgery was later that day. Installing a new broviak on the other side of his chest.
The rest of that round of chemo was relatively uneventful except for the sores that began appearing in his mucous membranes and of course the loss of his hair. We finally got to the point (during one of his short visits home) that he said to me “Dad, it is time to shave my head”, so we got the clippers out and went to it. From that point on he actually seemed to be more accepting of his fate and showed more courage in the events that were to transpire. There were many times that his smile and sense of humor would show through and inspire the rest of his family to stay above that pit of self despair that threatened to overwhelm us. There were many encouraging letters and gifts from family and friends that constantly kept his (and our) mind off of the issues we were dealing with. I would be very remiss if I didn’t point out how important that was to all of us.

During one of his early rounds of chemo a different doctor decided to do his spinal. David seemed to try the skill of every doctor on the floor. These doctors spend the day giving spinals to oncology patients and yet none of them seemed to be able to find the knack for finding the appropriate spot for David. It was during this spinal that he sat on the edge of the table and the poked him about 5 different times and pushed in and out several in between. It was at this point that I was holding David and his IV tube got caught on the edge of the bed and pulled enough to cause some bleeding in the stitches. It seemed to be ok however.

Sometime after his 3rd or 4th round of chemo (after the above mentioned spinal) his immune system had rebounded well enough to come home for a few days. The second morning home he was feeling pretty good and decided to get himself a piece of cheese for breakfast. He opened the door, grabbed for the cheese, and heard one of those cellophane wrapped slices hit the floor. He glanced down to pick it up and...........The knock came upon our bedroom door. It was 7:30 a.m.
"Mom! Dad!  My broviak fell out!" "Wha?.......Huh?......." When it dawned upon our sleepy brains what he had said we were out of bed in a flash. We still didnít believe what we heard because David was still laughing as he repeated himself. "My broviak fell out, see......!" and he held it out for us to admire. Sure enough there it was dangling in his hand with a small exit hole in his chest wall. Since he didn’t seem to be upset, we amazingly held our own composure as we scrambled to find the phone number of the clinic on-call service. Naturally we had to take him back down to the hospital for his 4th surgery, although this was very minor.  They decided to install a pic line, which is a small tube going into a major vein in the arm near the elbow. This was a temporary measure until his immune system (which was on the way down) rebounded enough to give him his 5th surgery.

Immune system therapy

One of the new ways they have to treat the immune system is by giving shots of a substance that stimulates the bone marrow to produce more blood cells. This has been a major advance in cancer treatment as it allows the chemo to be reintroduced at a much quicker rate and gives the malignancy less time to recover from the constant bombardment of chemicals designed to kill it. These shots were given by us into the flesh of his upper thigh. Now David had not had shots very much in his life so you can imagine giving a shot to a 10 year old in the soft skin of the upper thigh. Not a happy prospect I can tell you. Now these shots, we were warned, sting a little bit. Now imagine the above scenario and add in that the shot is akin to giving yourself a shot of pure alcohol. Fun huh?

The first time we went through this procedure David was also being weaned off of high doses of prednisone that he had been on. He ended up having many phantom type leg pains which we determined we part of the prednisone withdrawal and the pain of the bone marrow swelling up with all of the additional blood cells that had yet to migrate into his blood. Needless to say we ended up with some very traumatic episodes. Enough said.

The general schedule of treatment was 8-10 days in the hospital, 3-5 days at home. If a fever over 101 appeared while he was at home it was automatically back to the hospital for 4-5 days of antibiotics. (This happened several times), and since he was there, he might as well stay for his next round of treatment. No sense in wasting time going home for the rest of his vacation from the hospital when he could stay right there. At the time I resented that attitude. I came to appreciate it later.

During one of those short stays home from the hospital, while he still had the pic line in,  an interesting turn of fate happened. David had been receiving those painful shots but they hadn’t kicked in yet and his counts were still going down (according to the blood tests he took every 2 days). It was Sunday morning and he was asking us if we could please go OUT for breakfast. The poor kid hadn’t been out in public often and he just missed this part of his former life. Since his counts were so low we had been warned NOT to take him out in public for fear that he would be exposed to some infection. Secondary infection is one of the most common causes of fatality for children on chemo therapy. We regretfully told him no but after consideration we told him we would drive him through Burger King and let him drop the video game into the slot in front of the local video store. He seemed to accept that this scenario was better than nothing so we headed out to “breakfast out”. After going through the drive through we headed around the corner and pulled up to the curb of the video store. David got out of the van, walked acroos the 10 foot wide sidewalk and sidled up to the window and dropped the tape in the slot. It was at this point, while Sherry and I were watching him, that a 70 pound - 15 foot long, metal and plastic, video store sign decided to let go of the side of the building and fall 15 feet, crashing into the very top of David’s head and bouncing down his back to the ground. Sherry screamed, I was frozen with shock, and David......well he just stood there...for several seconds before I yelled out the door......  "Lie Down!" and ran over to him. As I watched an enormous bump begin to form on the top of his head I could hear Sherry calling  the 911 operator and asking people on the street that had been attracted by the crashing sound what the address of this location was. At this point David decided that his head hurt and that crying might be a good idea. When the ambulance and police arrived I informed them that his blood counts might be very low. Since he hadn’t lost consciousness my biggest worry was that if his platelet count was down he might be bleeding internally and we could have big problems. I had the worst time trying to get the local emergency room to understand this problem but they finally did order a blood test for him. It turned out that although his white blood cell count was very low, his platelets were still in pretty good shape. 2 days later the platelets dropped so we lucked out at least on that point.
A few days later a real construction helmet arrived from his aunt in Atlanta, painted with all of his favorite pokemon characters. David just loved telling this story in the hospital and letting everyone try on his helmet.

His fifth surgery was the installation of a mediport, which consists of a small saucer shaped drum inserted under the skin of his chest wall with a tube that snaked up under his skin to his neck. These devices are not quite as convenient for the type of chemo that David was receiving and they have been known to leak. However, with the luck we had been having with broviaks we had nothing to lose. This device worked well for the remainder of his chemo and was removed in January 2001.
 

Enduring

During David’s treatments people constantly commented on the courage of our family to be able to deal with this. I basically came up with this answer to them. If we had a choice we would run screaming from the room. When it is your child that is at risk you have no choice. You have to endure and take what comes because the alternative is unthinkable. I guess it does take some courage to get out of bed and face life but most of what you do, you do because you have to. You learn to live day by day and this effects the rest of your life. You begin looking at life as a day to day endeavor. That is something that I have to learn to break out of.
 

The Real Heroes

I remember watching a "60 Minutes" episode in which a young boy, who was under treatment for leukemia, decided that he was not going to take any more treatments because they were too painful. Instead he and his family were going to Mexico for herbal therapy of some kind. I believe he lived a few more months. I certainly understand the fears that this young man was facing but I will NEVER forget the family’s decision to support him. In doing so they gave in to his fear rather than supported and encouraged him. There were many times that I felt I couldn’t go on and there was always someone - family members, coworkers, friends and David himself that gave the support that I needed. I came to the realization that this feeling is a very selfish way to look at things and I began to focus more on my son. This helped a lot.

There was one instance where I went down to the hospital cafeteria to grab some dinner when I noticed a very young girl in a wheel chair wearing a surgical mask. (Surgical masks are often worn by patients when their immune system is very low). She was very swollen, discolored, and in obvious pain, but she still made the effort to spend a little bit of time off of the floor with her family. When I looked at her I came to a strange realization. We were actually lucky to be dealing with the cancer that we were dealing with. So many kids and families had so many more trials to face. Over the course of weeks that we were in Children’s we had many room partners that had come out of remission, had much more serious cancers and were not given much chance to survive. Everyone of them found time to smile at the nurses, doctors, and their families. These children are the true heroes. They wake up each day and find a way to brighten the lives around them even knowing that they are in for a day of sickness and pain. The doctors, nurses, and staff are also in a category by themselves. They face these children with jokes ready and smiles on their faces. It takes a very special person to be able to do this day after day.
 
 

My Views on Make-a-Wish