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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 III)

Part III

On Easter Sunday 2007, Philipp was admitted to the hospital.   Room number 4, at the hematology/oncology pediatric ward for bone-marrow transplant (BMT) of the Charité Clinic, had a double door and two long, horizontal, wall-to-wall windows of about 30 cm. (12 in.) wide on either side of the room, allowing visual communication with the next-door neighbors.  They were conveniently protected with blinds from both sides, acceding privacy when desired.

The specialists of the ward informed us about a relatively new type of targeted cancer therapy.  The drug in question to be used is called “Mylotarg” (generic name: Gemtuzumab Ozogamicin) which basically consists of monoclonal antibodies.  These antibodies only attach themselves to the antigens (cancer-causing cells) leaving the healthy ones intact.  When this happens, the antibodies move into the cells and release a substance called “calicheamicin” (a chemotherapy drug), thus attacking the DNA of the cells and destroying them.  During the period when our son was ill, Mylotarg was being administered to patients over 60 years of age in the United States suffering from the same disease.  Administering it to our son who was sixteen years old at that time in Germany meant he would be used as a “guinea pig” for which the doctors needed our consent.

There are times when unspoken words can say much more than a thousand.  They were sincerely trying to save Philipp’s life, there is no doubt about it, but in their rational minds, his chances of overcoming the disease were minimal.  Asking us for our consent to test the drug on him felt as if they were saying that we would make a great contribution to the medical world.  That was all.  Rationally speaking, this all made sense, but to sacrifice our son’s life for the sake of science was too much to ask from us, I thought.  On the other hand, the alternatives were not any better.  We felt we were between the sword and the wall.  My husband and I decided to hold tight to that infinitesimal probability of success and gave our blessed consent.  In Philipp’s mind there was never a doubt of defeat.

Preparations were made for the treatment.  The insertion of a catheter through a large vein in his chest located very close to the heart would make it much easier and less painful to administer the drugs as well as to take the numerous blood samples required.  The complete destruction of the bone marrow and the cancerous cells were the next steps in order to give leeway to the new bone marrow to be transplanted and allow it to reproduce.  From this point on, anybody coming into his isolation room would have to disinfect the hands, wear gloves, a hospital gown, a mouth mask and change shoes to a pair used specifically for this purpose.  No physical contact was allowed as a preventive measure to avoid transmission of undesirable bacteria or infection.  Whatever was brought into the room had to be meticulously disinfected prior to contact.

The food being served at the hospital became a serious point of concern.  Everything that Philipp was allowed to eat was pretty much overcooked and tasted bland, to be polite.  He had always been a food lover and their weekly menus looked unappetizing to him.  I have always been a strong advocate of expressing love to my family through nutritious food.  It is the best gift I can give them on a daily basis and a way of knowing that at least once a day I am contributing with love and care to their well-being.  From the moment he entered that isolation room, he was already yearning for homemade food.

Ten days prior to the bone marrow harvest for the transplant (the collection of the bone marrow from the donor), Philipp’s younger sister, Helena, was not allowed to attend school or to come into contact with people outside home.  This was a sensible measure imposed by the doctors in order to avoid any undesirable infection.  She was ten years old at that time.  The days were spent at home, doing her school assignments, watching TV/videos and talking to her friends after school hours.  On the eleventh day she was admitted at the hospital, four rooms away from her brother.  I was allowed to spend the night with her so the three of us spent hours together talking and simply enjoying each other’s company.  My husband came to visit that afternoon after work, but did not stay too long as our second son was at home alone.

For Helena there was not a single doubt about helping her brother.  As parents, my husband and I were in awe at how much she was willing to go through in order to see her brother return to normal life again!  We are eternally thankful for her kindness!  Her dad told her she could wish for herself anything in this world and it would be granted without question as a sign of our gratitude and love.  “A dog wouldn’t be bad at all”, she exclaimed.   The nurses took very good care of her, including showing her which button to press if she had any wishes for the evening.  Helena did not hesitate in making use of that offer, so the orders started rolling in:  a pizza, an ice cream, some coke…

The following morning at eight o’clock a nurse came in to give her some Dormicum, “to make you a bit sleepy”, as she was told.  I could sense that she was getting nervous and refused to take the medication, but eventually agreed to it after long minutes of begging from my part.  Once its effect began kicking in, she started to cry.  She was terrified about the procedure and mostly about feeling pain.  I accompanied her all the way to the surgery room trying to appease her by repeating over and over again that everything would be alright.  A gas mask was laid over her nose and mouth and before she could count to three she was sound asleep.

I waited outside.  Those sixty minutes seemed eternal to me.  I could not bring myself to read or listen to music.  I decided to go out and take a walk through the beautiful campus garden, listening to the birds chirping in that sunny May morning.  I watched some patients going for walks pushing with one hand their infusion stands from where infusion bottles hung connected to the their arms or wrists and with the other, holding a cigarette.

Once Helena woke up, she felt a slight pain around the lower back area.  The bone marrow aspiration is done with a special syringe from the iliac crest.  They punctured her on both sides of the rear hip bone.  She felt somewhat weak, but stable.  The doctors then proceeded by infusing back the blood they had extracted from her a few days prior to the bone marrow harvest in order to help speed up her recuperation period.  Her fresh and healthy bone marrow had to be centrifuged to prepare it for transfusion a few hours later.

Meanwhile, Philipp waited in his room.  At this point of the preparation for the transplant and with literally no more immune system to protect him, he felt weak and had a bit of nausea.  After long hours of waiting, the doctor finally arrived with the treated bone marrow.  It looked darker than regular blood.  He connected it to Philipp’s catheter and after about 30 minutes the transfusion was over.  Now all he could do was wait.

To be continued…