"Holding My Breath"

Neutropenia Support Association Inc. Newsletter, Volume 6.1, Fall 1994

That month began like any other. My son's stomach ache on Sunday must have been too much pizza at his sister's birthday party. Back to the doctor a few times when his stomach appeared distended, and he appeared pale and sweaty with veins showing through his chest. Each time we were told it was the flu. Trips to a hospital walk-in clinic and emergency left me exhausted. I was told I was an over-anxious mother, and dismissed.

I called another hospital. After he had been X-rayed, things began to happen. It was confirmed that he had fluid in his abdomen.

That Saturday night and Sunday were two of the worst days to be endured. Hooked to an IV he was so distended he could not lie down, walk, sleep, or drink.

The CT scan showed a mass in the abdomen. It was a large tumor. Surgery; a biopsy, spinal fluid and bone marrow samples followed. He was in ICU with a collapsed lung, and renal failure due to the amount of fluid and pressure and strain on his organs.

The cancer, classified as a Stage 3 in severity, had spread over the lining of all the organs in the area. The good news was it might be contained below the diaphragm and not involve the bowels. His bone marrow was negative. We began a very aggressive and highly successful protocol for this type of cancer.

I will always remember the moment I had to tell my son "the whole truth". His immediate response was shock, despair and anger. He wanted to know if he was going to die and I had to tell him that I did not know. He slept for almost a whole day. When he woke, he asked me some very direct questions and told me he was ready to fight. He had a lot of things to do and he was going to do them all. That was the turning point for my son.

Those days are mostly a blur, but I can recall the grim faces of the doctors warning us not to have much hope. I know that was their duty, and perhaps it was fortuitous that their words never really totally "sunk in", because it was unfathomable for me to have anything but hope. He was my son.

He was placed on continual dialysis, a fairly new procedure for cancer patients, and it had only been available for a year-and-a-half; this was a very positive reminder that this is a time when there are new ideas, new approaches, new procedures and new drugs every day, a time when miracles happen.

It was decided that the chemotherapy, although urgent to stop the cancer, had to be delayed and reduced from the original protocol. With fluid still trapped in the abdomen, and the kidneys and lungs not at full function, the drugs would have killed him. His treatment was halted many times while he regained his strength. We slowly learned that the body and mind are more powerful than we are.

There were problems with everything. Decisions to let him drink or eat changed from day to day, often hour to hour. The catheter, transfusions, IV tubes, spinal taps, out-of-control fevers, endless x-rays and tests, collapsing veins, drug reactions, more drugs to combat the reactions, and the noise and lights 24 hours a day in ICU!!!

Over the next five months of intense treatment, moments of true elation, the peaks...the first signs of kidney function; the signs that the lung was improving; his first time sitting on the edge of the bed, moving out of the ICU...these were moments of joy in the midst of chaos.

From the moment my son entered ICU, I started a daily log. Every medication, every reaction was noted. I could help my son by learning and knowing exactly what was happening and why. This was very important to both of us. We had entered the foreign territory - the language, routines, procedures - all new and potentially frightening.

Ten days in ICU were an eternity. The most difficult is that when my son needed me to hold him, or perhaps when I needed to hold him, to comfort him, I couldn't. The tubes, equipment, needles, oxygen, wires, and sore spots, made it impossible, and that hurt.

The insidious mouth sores that my son endured cannot be understood by anyone who has not experienced them. The vomiting, the weakness, the nose bleeds, hair loss, tests, tests, and more tests. He suffered.

Then there were all the additional drugs to combat the side effects of the chemotherapy, and the infections, and ensuing pneumonia. I had raised my children holistically, with naturopaths their whole lives, and here I was, happy that he was being pumped full of drugs, requesting that the morphine should be increased so that my son wouldn't suffer.

My son had to deal with the harsh reality that just when he seemed to have survived the first phase of the chemotherapy, and began to feel a bit better, the cycle was to begin again. The treatment is very intense with two weeks between five-day treatments.

My son has always been very expressive in his writing, music and art. One very "blue" day, I encouraged him to leave his room and venture into the playroom. He could not yet leave the floor. I took some paper and asked him to draw how he saw himself. He drew a bony, hairless, scarred, frightened boy in a cell with bars, a ball and chain on his leg. I then asked him to draw where he wanted to be. The next frame showed a silhouette of that boy breaking through the cell wall, running. Then I asked him to picture himself doing all the things he loved. He quickly drew pictures of him playing basketball, playing piano, sitting on the sofa at home relaxing, with his sister and me, our dog, two cats and hamster. He felt better. I felt better. These drawings (and we kept adding all the things he pictured himself doing) soon decorated all the walls. These were catalysts for hope. They served as small goals to reach. He began to picture himself breaking through that wall.

One long month later, my son went home for the first time! Another triumph! We were home for almost 6 days before returning to the hospital.

Later that month, a window opened. In devouring all the literature I was given, I came across a support group for neutropenia. As he had suffered from sever neutropenia with every chemo phase, I felt I should learn as much about it as possible. The voice on the other end of the phone was a hopeful and informed one. It came at a time when the doctors felt he needed some help with his severe neutropenia and side effects from the chemotherapy.

Through Lorna Stevens, I learned that there was an approved drug, and one with virtually no side effects. I thought it would be easy to obtain this G-CSF, and it was stocked in the hospital!

However, the hospital did not have the funds for the approved drug. The hospital often settled for the experimental one, because it was free. As a mother, I wanted the very best for my son.

The support and information I received from Lorna enabled me to intelligently discuss the benefits with the doctors, encouraging them to read the literature, watch the video, and realize that Neupogen (G-CSF) was the best choice.

It was through our Staff doctor on the floor, who, after reading the literature, agreed and signed the order for G-CSF.

After a bumpy start we began the G-CSF on the fifth day of each phase of the protocol. It worked quite well on one of the two phases of chemo in each session. It lessened and sometimes eliminated the mouth sores to a very tolerable level and my son did not go through the floor in between treatments. There were times when he did not have to face the anticipated infections. That was a big deal. Not only did the infections drain his energy, but they always led to a myriad of drugs in the attempt to curb the fever, and they rarely made much of a difference. Infections and fevers also delayed the treatments.

The fevers were almost eliminated in one phase and reduced to the extent that his stays at home were more extended and more enjoyable. Neupogen gave my son options and the strength to see it through. It allowed him to stay home a little longer and he even made it to school for a couple of hours! He was able to feel better when visitors dropped by. All these things gave my son hope and confidence that he could deal with some of the awful things that chemotherapy can do, while terminating a disease. It helped him to picture himself beyond his illness.

The next few months were a series of very few highs and several lows. We could never tell how things were really going and oncologists are reluctant to commit to any kind of direct answers to the many questions I always had. There were setbacks, two of which resulted in major surgery when CT scans indicated more tumor. Thankfully there was no tumor. Children on our floor who didn't make it left us devastated. We became very close to one little boy, and his death was almost too much.

It is many months later. Today is a milestone...my son had his porte removed and next week we reach the half-way point at our sixth clinic appointment. As I listen to him playing his guitar in his room, and marvel at this bravery, his talents, and think about his sister, who is once again finding reasons to laugh, I too am finding reasons to rejoice. My son has said that having cancer and having been through the treatment, finishing it, and waiting through each checkpoint is like "holding your breath and not being able to exhale". We are just now beginning to breathe.

Illness affects each and every member of a family. Siblings often suffer feelings of abandonment, fear, isolation, jealousy, and anger, and seldom receive the attention they require. It is a tribute to the love and support that surrounded us and the will of my son and my daughter that I gratefully and thankfully write these words today, with hope in my heart and the confidence that he will be fine, and that we all will heal. We never really know our endurance levels, our true strength. No one, especially a child, should ever have to be tested like this to find out. But to you out there who are being tested and taken to the very edge of what you might imagine to be your limits, take heart. Look for that one strand of hope, that tiny almost nonexistent crumb, and try to find a window in your mind to a place without pain and suffering. Don't give up.

Through the Wall

The blare of an electric guitar makes me smile, even if at full volume! The inevitable shout from the sister and the inevitable retort from the brother...I am still smiling. The "normality" of our lives envelope me like a warm blanket.

A year ago we were leaving the hospital, my son having completed the last chemotherapy session of an intense protocol for Burkitt's Lymphoma. Our story last fall "Holding My Breath", recounted our experiences, frustrations and fears as my son battled through a situation that had originally been deemed "hopeless" while he fought for his life in intensive care. Now, our visits to the clinic are every four months, and happily, uneventful and brief. We walk away with renewed hope as each milestone is passed.

My son missed most of Grade 6 in the 1993/94 year, present only in September and parts of the last term. There was no question in my mind that he would be put forward to Grade 7 as the difficult year with cancer had been "punishment" enough. It would have been too stressful for him to be separated from his friends. A supportive teaching staff and tutoring in Math helped immensely, but even with the confidence boosters, Grade 7 has proved to be quite a challenge.

I worried about the stress. Frustration levels were high, the demands of the rotary system new to him, and the load of daily homework and projects all became major challenges. The first few months were extremely difficulty and he often wondered if he should have been held back. His concentration faltered, his self-esteem was low, he felt pressure and incompetent (and he was making his sister's life hell, at home!). The fact that he had missed so much school and that he should be proud of being in grade 7 was of no importance to him. That was then and this was now. He wanted to move on, and consequently, was very hard on himself and unhappy.

I knew he needed additional help. We had been connected to the child psychiatrist while at the hospital, had seen him regularly while there, and continued to do so through the spring until summer. He had helped my son immensely (and my daughter) and my son still uses the tape they made together whenever he has problems relaxing or sleeping.

This doctor recommended another child psychiatrist in our area, for follow-up purposes whom we began to see in the Fall. Our visits are only occasional now. We saw him separately, and together as a group. It was very helpful to have this third party voice and the strategies he offered for lowering the stress levels, at school and at home.

By December, the situation eased. He felt less pressured. Assignments were getting done. The routines were familiar. Math wasn't a cinch, but less of a burden.

And then, without noticing the day-to-day changes, something happened - I got my boy back! I can't pinpoint exactly when, but early in the new year, there it was - that smile, the infectious laugh, the quirky wonderful humor. This was my boy, physically and spiritually healed. He had begun to reclaim his life, to the fullest.

His current schedule includes organizing a garage band (Where he plays lead guitar/keyboard and vocals), a professional band (lead guitar and vocals) their first concert was in January, piano lessons, saxophone from school, the basketball team, Hebrew and Bar Mitzvah lessons, and general goofing around with good buddies, listening to music, playing tennis, skating, rollerblading, shooting hoops...he is making up for lost time, with relish!

As we take each step further away from that hospital life, we talk about tomorrow and plan far beyond tomorrow, with the growing confidence that we will all share in it.

The healing process affects each member of the family in a different way, at a different place. I battled with myself to let go and not worry too much as he bounded toward any and everything there was to do. My daughter, 10, is still in the healing process, not fully believing that it is over. This is her year to recover and to feel all the aches and pints that "were not" allowed, while her brother was sick. She if happier, but reticent to venture far from home. She needs the attention now.

It is every parent's worst nightmare to have a child fall ill, and when it is a life threatening illness we are helpless, spinning in the void of our own worst fears, dealing with painful realities and clinging to the hope while we try to hold the family together and soothe and comfort the sick child.

While it is a path no parent or child should ever have to take, when we emerge on the other side there is great joy. I am thankful for all the prayers that were answered, for the support of family and friends and well wishes, the technology, knowledge and medications that are available today, my perseverance in exploring every avenue for his physical and psychological care, and my son's will to survive.

For those of you who have reached this plateau, you understand. For those of you still in treatment, I wish you strength. It may seem like as though life will never be the same, it will not. It will be different, but if you have each other, it will be enough.