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When Leukemia Knocks At Your Door (Part VI – Final)

Part VI

Philipp received morphine once again, which helped relieve the pain.  Whenever the urine was flowing into the bag unobstructed, he seemed to be in a clear state of mind.  Other times, it gave me the impression he was in another world where his sixth sense was much more alert than all the other five.  A couple of incidents speak for themselves:  his next-door neighbor, a boy of about his same age passed away.  Philipp did not know this, but he had the feeling that something had happened.  He kept asking the nurses inquisitively about his neighbor’s condition.  Another time he repeatedly asserted that there was someone standing at the door.   He insisted that I check who it was.  I knew there was nobody standing there, but decided to comply to his request by opening it and let him see for himself that he was wrong.  Seeing that no one was standing there did not help.  He could sense someone’s presence.  I could not help looking at the clock right above it.  It was 1 pm.  An hour later I had to go home.  As I was on my way to the visitors’ locker room, one of the moms informed me that little T. had just passed away, at 1 pm.

In the first case with his neighbor, Philipp talked with him over the phone several times,  but the boy did not show much interest in him.  He wanted to be left alone, undisturbed.  In the second case, he knew nothing of little T’s existence.  The only thing they both shared in common was the fact that they were treated with Mylotarg.

At that time I was trying my best to help my son in any way possible, from cooking for him every day to balancing his energy level.  I worked with crystals, did some acupressure by not pressing too hard, given the delicate condition of his body.  I also “smuggled in” charcoal tablets.  Every evening at home, I went into my private acupuncture room to release my sorrow and cried, meditated and prayed.  My mantra-chanting-like prayers, which helped me stay focused, aided me to get through the days and while I felt more balanced, the most important thing was that I felt it was helping Philipp through the toughest moments in his life.  This is something I cannot prove with scientific facts and it does not matter anyway.  This is about feelings and emotions, something that cannot be measured in scientific terms.  It was about love, unconditional love, the love that heals.  Each member of our family expressed it in different ways, each doing what they could best to express it in their own terms, thus contributing to Philipp’s healing process.

My son’s way of dealing with the hardest moments of the treatment was by focusing on the now.  He felt that that there was no past and no future.  The future was difficult to predict, if not impossible.  Every new day brought a new situation and no one could tell how the following day would be.  Focusing on the now was his way of concentrating on what was happening at that moment and gave him the strength he needed to help endure the situation.  Despite the difficulties, even during the times when he hit rock bottom, he never lost hope.  It was also during this period, as well as when he experienced the first chemotherapy blocks back in 2005, that he came to realize what the most important things in life are his family and friends, living the now and aspire to do good to others.  The latter one is what makes him especially happy.

The doctors administered him red blood cells to make up for the blood that was lost through the urine and Thrombocytes, or platelets, which helped in the formation of blood clots, perhaps targeting the restoration of the bladder wall.  He also got “legally doped”, as the doctors would say, with Erythropoietin, better known as EPO.  It is a type of hormone that helps produce red cells.  This is the famous controversial drug administered to athletes from the doping scandals.  Its purpose was to help the new developing bone marrow by stimulating the production of red blood cells.

The weeks went by with good and pain-free moments as well as with painful ones.  We were all in an emotional rollercoaster with ups and downs, sometimes turning abruptly when things seemed to be going in a positive direction, when suddenly something new showed up and this in turn put us all emotionally up-side down again.  The first thing I did every morning after giving him his good morning kiss and a hug was to check his urine bag.  It was a disappointment to see blood clotting up in there.  As the weeks passed, it felt like there would be no end to this, but one good day, suddenly, what I saw was Mother Nature’s gift in all its splendor and glory, untainted by red spots, shining its brilliance and magnificence to every corner of the room, every corner of the universe, the humble color yellow!  I was so exulted that I could not hold back my joy and I was not about hide it either!  Philipp was a bit more cautious than me, especially after all those ups and downs.  He remained under observation for about two more days until his wish to spend the rest of his days of isolation at home was finally granted.  His five long months of hospitalization had at last come to an end!

At home he got more exposure to other types of bacteria and germs.  No one had to wear mouth masks or handle him with rubber gloves anymore; only his friends had to whenever they came over.  I began giving him Chinese herbal medications. Their pungent smell and taste, made it difficult to swallow, but after a while Philipp got used to them.  Little by little he began having more exposure to people outside the family as well as in nature.  He sat for long minutes in our garden, breathing in all that fresh air and enjoying the sun whenever it was shining unobstructed by clouds.  He needed to work out with a physiotherapist at home, slowly building up his physical strength.  After the obligatory 200 days of isolation were over, Philipp was finally able to go back to school.

After graduating from high school in 2009, he attended college and obtained a Bachelor’s Degree in Neuroscience and Cognitive Psychology in June 2012.  He will soon begin his MA this coming October in Neurocognitive Psychology at the Ludwig Maximilian University in Munich, Germany.

Life places many hurdles in our paths.  They are not there to block our way as a “no entrance” sign, but rather as a challenge that we are suppose to overcome.  There are many lessons to learn along the way and many ways to learn them.  Philipp chose his own hurdle and perhaps we were made part of that decision.  It feels like a wake-up call to his soul, and ours’ as well.  Dear son, I thank you for your beautiful gift!

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*Since June 2010 Mylotarg has been withdrawn from the US market.  According to medical reports, this monoclonal antibody did not prove to be better than other medications used to treat cancer patients and has been linked to deaths from liver and lung complications.

**As I mentioned earlier in part III of this blog, we were introduced to Mylotarg as the best and perhaps the only option in the market to help fight the disease.  I am not an advocate of Mylotarg nor do I believe my son’s recovery can solely be attributed to it.

I should point out the difference between ‘curing’ and ‘healing’.  To cure someone is a process by which the patient is treated with medications, an external agent that helps get rid of the symptoms.  It is based on the belief that everything in the universe is separate and the modus operandi of the patient is thus passive.  The holistic approach of healing involves dealing with the dis-ease from within by making the patient actively involved in the process in order to return to perfect health.  Becoming active in the restoration of our health means that we must first understand that everything in this universe is made of energy.  Since our thoughts and feelings are also a form of energy, they can very well influence our health.  Negative thoughts (negative energy) will eventually cause negative effects in our body.  Likewise, positive thoughts (positive energy) will have positive effects.  When a person is diagnosed with a disease, this is indicating that something within that person is out of balance.  Martin Brofman, Ph.D., creator of the Body-Mirror System said, “Everything begins in your consciousness”.  It is there we have to look at and make the changes for the healing process to take place.   A change of thought pattern and staying positive throughout the treatment can enormously help the healing process.   Furthermore, focusing on the now allows us to be completely aware of the present moment and deal with it effectively.  We are each creators of our own realities.  What is it that we desire?  Remember that energy flows where the focus goes.

There were many factors that contributed to my son’s total recovery, among them, a very efficient and professional medical team who handled every step of his recovery process with excellence and dedication and to whom we will be eternally grateful.  However, the patient himself must not be forgotten.  His own contribution in focusing on the NOW, handling every complication with courage, never losing faith and keeping a clear vision of his target “at the end of the tunnel”, has not only aided in his recovery, but in his healing process.  This target was life.  His is an excellent example of how a patient should actively get involved in becoming healthy again.

A balance between mind, body and soul are imperative in order to achieve complete healing.  The doctors’ excellent performances as professionals cured the body; Philipp took care of healing his mind and soul.  His family and friends also contributed to the mind and soul healing process through prayers, alternative medicine (TCM, acupressure, energy healing, charcoal tablets), love-infested food and above all, our purest, deepest and ever-present love.

Family photo at the top of Mount Birkenstein, Germany, July 2012.

Philipp (22 yrs. old) and Helena (15 yrs. old) during Philipp’s graduation from Jacobs University, Bremen, Germany, June 2012.

A typical homemade vegetable dish.

Helena’s manifestation of her wish:  in March 2008, Mia, a beautiful Bernese Mountain Dog became a member of our family. (Lake Ashinoko, Japan, January 2012)


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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…