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When Leukemia Knocks At Your Door (Part II)

Part II

We knew very little about the disease.  We researched online, reads books on the topic and talked to several doctors about it.  I turned my attention to alternative medicine including Traditional Chinese Medicine (TCM).  I wanted to find a way to avoid chemotherapy.  The thought of endangering Philipp’s life even further by wasting too much time in my search terrified me extremely, but there was no other alternative.  Time was a factor and I had very little information.

The following Monday we took him to the hospital where he would begin with his treatment.  He was diagnosed with acute myeloid leukemia (AML), a type of cancer that overproduces abnormal immature white blood cells.  These mutated blood cells are incapable of combating infection.  They reproduce quite fast, hence “acute”, and by doing so, they eventually fill up the bone marrow leaving no space for the healthy red cells, the platelets as well as for the healthy white cells to do their job.  If this disease is not treated within weeks or months, it can be fatal.   There are many different sub-types of AML.  Our son had the “M4” type.

The chemotherapy treatment began.  It was divided into five blocks and they were administered once a month for a period of about five days each, during which he had to stay at the hospital.  He was allowed to go home after each treatment. Soon enough Philipp started dealing with the horrible side effects of the chemotherapy: hair loss, nausea, mouth sores and feeling weak.  With the help of acupuncture and acupressure, some of the side effects were minimized.  Charcoal pills were recommended by a friend of mine and healer to reduce mouth sores and Chinese herbal medicine, which was sent to us by another good friend and family doctor from China to help restore his bone-marrow, were all administered with the consent of the doctors in Berlin.  I even placed a crystal underneath his bed.

The last block ended on Christmas Eve and we were extremely happy to be able to celebrate Christmas at home together.  Cooking for that occasion became a family event, full of laughter and joy!  We sang Christmas carols, unwrapped presents, had a great turkey dinner and had a wonderful time by simply enjoying each other’s company with a different sense of awareness.  We savored every minute of it with love in our hearts, immensely grateful for this blessing.

New Year arrived and with it the radiotherapy.   Philipp showed a lot of courage throughout the chemotherapy as well as the radiotherapy treatments.  He admitted that the thought of dying never crossed his mind and was just happy that the whole ordeal was over.  He began attending school once again; life came back to normality.  The year 2006 became the year of hope for all of us, especially for Philipp.  So far, it seemed like the treatment was a success at inducing remission.

In February 2007 he went to the hospital for his monthly checkup after school.  I had planned for that evening to go with a friend of mine to a concert, but that morning I woke up with an incredible pain in my eyes.  I could not figure out what was happening to me nor could I explain where this pain was coming from, but as the hours passed by, it became more and more intense.  I thought I would not be able to drive anywhere being in this condition and decided to cancel the appointment altogether.  As soon as I had made up my mind, the phone rang; it was Philipp.  I could tell from his voice that he was sobbing.  A cold chill ran through my spine and I found myself thinking, “oh no, please God, NO!”  And then he broke the news.

I called my husband and we agreed to meet at the hospital.  We were both devastated.  I do not know how I managed to drive; the only thing I realized was that all that pain I was experiencing in my eyes that day was suddenly gone.  Was it a “mother’s premonition”?  Was I intuiting something before that I did not want to “look” at because it was too painful?  What was it?  I remember driving, trying to stay calm and saying to myself that an automobile accident was something I did not need now.  I prayed to my parents asking them for protection.  I kept asking to myself, why, why, WHY!

After a couple of attempted chemotherapy treatment failures, the doctors told us that the next step was going to be a bone-marrow transplant.  This time, the leukemia cells in Philipp’s body were much more aggressive.  They were not quite sure whether the cells were a new, more aggressive type or if the old ones had simply gone through some mutation process.  The doctors were not too optimistic.  Their top prognosis was 30 percent.

The search for a bone-marrow donor race began.  It is highly recommended to find a donor with a similar genetic make-up as the patient’s in order to avoid complications.  In Philipp’s case that would have meant perhaps a long search because my husband is German and I am of Okinawan ancestry.  Since he was being treated in Germany, finding a donor there with a similar genetic make-up would have been extremely difficult.  Perhaps in Japan?  The best option, however, would be to look among the siblings.  Philipp’s ten-year old sister turned out to be a match.  It was not a perfect match, but good enough according to the doctors.

To be continued…



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When Leukemia Knocks At Your Door (part I)

Do you know what is it like to find out that your child’s life is being threatened by cancer?  This is his story, our story of how he and we dealt with the disease.

Part I

A couple of days before the end of the school year my fifteen-year old son came back from school all sweaty after at least four hours of soccer and Kung-Fu practices.  He loves sports, but this is a bit too much, I thought.  As he walked in, he said,  “I’m so tired, I’m going to bed.”  “How about dinner?” I asked.  “No, not tonight,” he replied.  Then looking down at his legs he said, “Hey mom, look at these tiny red dots on my leg!  What are they?”  They looked like a sweat rash so I did not pay much attention to them.  “They’ll be gone by tomorrow so don’t worry,” I replied.

We were living in Beijing, China at that time.  It was the year 2005.  Two days after my son’s rash incident, Ayi, our housekeeper, helped us carry our luggage to the street.  (Note:  it is very common in China to have a housekeeper.  For simplification purposes and as a sign of respect, housekeepers are usually called “ayi”, which literally means “aunt”).   We took a taxi and bid farewell to her.  Suddenly, I had this unexplainable feeling of deep sadness as I watched her through the car’s window, as if I were saying goodbye for good.  My interpretation at that moment was that I had gotten to like her so much and that I was simply sad to leave her behind for a few weeks.  I was too excited about the trip to give those feelings any thought.  We flew to Berlin, Germany.  Our summer vacation had finally started.

My husband had made great plans for the family for the summer: to spend four weeks back home in Berlin, reconnect with our friends and indulge our lungs with fresh, clean air.  It was also planned to stop over in Tokyo on our back to Beijing and go on a backpack trip with the kids through Japan.  The children were real excited about that part of the plan and especially the boys because they were born in Tokyo.  Traveling as backpackers sounded like a great adventure to them!

Five days before our departure from Berlin, we had a doctor’s appointment for a routine medical checkup.  It was the usual stuff: blood and urine analyses, blood pressure, weight, the organs and the routine health-related questions.  That afternoon the doctor called to inform us that we were all healthy, well, most of us. He only wanted to run another test on our son Philipp because he was not satisfied with his blood values.  The following morning, after my husband had taken him to the doctor’s office, he came back home alone and in tears:  leukemia.  Philipp had leukemia!

Our world was suddenly crumbling down before our very own eyes!  I found myself leaning against an empty wall in our empty house crying as if wanting to embrace its bareness, feeling just like it inside me.  I wanted to run out, cry and scream and yet suppress all the pain inside me.  I wanted to believe that this was just a nightmare that would be over the moment I would wake up.  The pain in my heart, in our hearts, in our bodies and in our souls was cutting relentlessly through us.  That aching heart of mine would take years to heal.  I did not want to be touched.  I needed to deal with it alone.  All the while our eight-year old daughter and our thirteen-year old son were watching us from the gallery of our house, confused, not knowing what to make out of what they were witnessing, not understanding the loud echo of our sorrow nor what leukemia meant.

My husband had come back home to pick me up and take me to the hospital where our son would experience his first bone marrow  biopsy and a full blood count.  We needed each other more than ever, cry together and stay strong together.  The chief oncologist explained to us what the medical procedure would be once they knew what type of leukemia our son had.  I embraced Philipp and he seemed a bit confused, not really understanding either what all this tumult was about.  He said that the doctors had informed him that he was suffering from leukemia and that he would have to go through a chemotherapy treatment.  He wanted to know why we couldn’t just take with us all the medication he needed back to China and continue with our traveling plans.  He did not know anything about chemotherapy.  No one dared to tell him that he had blood cancer and that his life was being threatened.

To be continued…