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 V)

Part V

Every day I brought lunch for Philipp from home.  I cooked everything he liked, especially vegetables.  Fresh vegetables and fruits were at the top of his list, but since he was only allowed to eat over-cooked food, fruits had to be discarded from his wish list for a while.  Philipp’s days in isolation were centered on the little yet important pleasure of eating.  Lunch for him became the highlight of the day as well as all the frequent visits his friends paid him.  I used to cook the vegetables only half done since whatever food he got had to be heated up in the microwave oven at the hospital before he ate it.  This was a measure of precaution, “doctor’s order” as the nurses would say.  I wanted my son to get some more of the nutritional benefits of the vegetables so I consciously, sort of, broke the rules by not cooking them thoroughly and would ask the nurse to simply heat it up a bit.  There are times when breaking the rules can be beneficial to your health, and by doing this, it did not harm him in any way.  The quote, “Rules are made to be broken” applies here very well.

Sunday, May 27^th arrived.  It was Philipp’s birthday.  Extremely happy to be back in the BMT, we showered him with presents and a huge birthday card from the series “Ohne Dich Ist Alles Doof”  (“Everything’s bad without you”, or “Nothing is good without you”, either way).  Here is a YouTube video of the main character, the sheep and what the card more or less contained, excluding the romantic part: http://www.youtube.com/watch?v=XApCHTvgNbg

The doctors and nurses came that afternoon bringing an inflated plastic birthday cake since he was not allowed to eat a real one at that time.  For Philipp it was a great achievement to have made it that far.  I truly believe he will never forget that birthday.

By this time the drinking marathon had become one tearful torture.  This though, came to a sudden stop as the next complication due to the chemotherapy treatment arose, the result of which caused the eight to ten liters of water drinking order to be reversed.  He was diagnosed with Hemorrhagic Cystitis, an inflammation of the bladder that leads to dysturia (painful and difficult urination) and hematuria (presence of blood in urine).  Its cause could be attributed to either the bladder wall becoming so thin due to the chemotherapy that blood began filtering in, or a small hole opening up from which blood flowed in.  This blood started clotting inside the bladder creating at times blockages at the base of the bladder that is connected to the urethra.  The instinctive and most basic need to pass water became an unimaginable torment.  Not being able to relief himself freely, the urologist connected him to a urine bag, which was in turn connected to his bladder through his penis with a catheter.  He was immediately instructed not to drink too much, to the effect that his intake of water was rationalized to about one liter per day.  Extreme thirst followed, where every drop of water was more precious than gold.

We were told that this was not an unusual occurrence among bone marrow transplant patients and that it was very difficult to say how long it would take until his condition would heal.  From experience, the urologist said, it could take from two to nine weeks.  That was certainly not a very comforting thing to hear!  Philipp wanted to leave the hospital, go home and spend the rest of the time of the isolation period there, but that had to wait, and wait he did, not for two, not for nine, but for twelve weeks.

My husband Stefan and I visited Philipp every day, never skipping one single day.  I went there after dropping Helena off at school and stayed until 2~2:30 pm, time when I had to rush back to pick her up; Stefan went in the evenings after work. Sebastian went in the afternoons whenever he could as well as Philipp’s friends.  Helena had to wait until the weekends to see her brother.

I remember a Sunday morning when I went to the hospital taking Sebastian along.  It happened during the week when Philipp was extremely afflicted by the edema.  I needed help to wash him. It was becoming more difficult to fulfill this simple chore alone since he was getting heavier by the day and was under the effects of morphine.  I needed Sebastian to help me hold Philipp.  He had not seen his brother for a few days, so it came to him as a big surprise to see his brother in such a state.  It took us tree hours to properly wash him, moving and supporting his body slowly, carefully, to avoid more unnecessary pain.  This experience, which may seem unimportant, will remain ingrained in our memories as one of the most dreadful period during his hospitalization.

If there were times when I was driven to the extreme, when I thought I would “lose it”, a time when I felt hopeless and that my son was helpless, two of them come to mind.  The first one was when he was suffering tremendously from the edema.  It was for me, as a mother, a terrible and painful experience to see my own child in so much pain, gaining so much weight, his eyes bulging out like if he were to explode at any moment.  I am still finding it very difficult to write about this after all this time.  The fear, the pain, his crying, our helplessness as parents, I can still feel it and hear it.   The second time was whenever his bladder could not be emptied out because the catheter got obstructed with clotted blood.  The situation had to be handled manually by the doctors.  A new catheter had to be inserted and jerked in and out once, twice, three times… as if trying to unclog a sink pipe.  As a woman it is difficult for me to explain how intense that pain must have been in the most vulnerable part of a man’s body, but as a mother, I wanted to push the doctors away from him and somehow stop this craziness he had to endure.  Every scream, every cry was becoming unbearable.  I did not know if I should stay in the room or walk out while he was being treated, but the thought of leaving my child to suffer his own fate was not an option.  I felt emotionally defeated; by then I was at the lowest point of my existence.  I held his hands and we cried together, sharing his pain, giving him my energy to endure it.

To be continued…