Saturday, April 30, 2016

It's Truly In The Blood

After our last experience on the Camino Frances in the fall of 2013, we have had a lot of time to reflect on what it all meant to us, both together and individually.  What other pilgrims have described of their post Camino experiences and reflections are true.  It gets into your psyche, into your soul and into your blood.  We carry it still.  So much so that we were planning another pilgrimage on the Camino de Santiago, but this time through the country of Portugal.  Hopefully starting from Lisbon.

We were all set to set out in the fall of 2015. When, as is so common in this life, plans got derailed by the harshest of circumstances.  It wasn't until then that I was truly forced to apply the lessons I learned on our Camino journey two years before.  I will try to pepper them throughout this most difficult explanation.

It's not what happens to you, it's how you respond to it that matters.  So much happens to us on the road of life that we would rather not deal with.  I knew that if I really tried to see all the miracles and blessings and not concentrate on the 'whys' of it, I really would see them.  I figured this out on our 800k journey step by step.  And I would put it into play on this next painful pilgrimage. For that is what life is, is it not? A pilgrimage.

Our 26 year old son was sick. Really sick. After one seemingly benign illness following another, a simple blood test and he was diagnosed with Acute Myeloid Leukemia, a deadly blood cancer, on April 15th. The minute he went to the emergency room, little did we know, he would not check out of the hospital for 25 days, and God forbid, maybe never.  We spun into one of the worst nightmares two parents who love their child more than life, can experience.  Ironically, the hospital that treated him was the same place he was born in.  We hadn't been there in 26 years. We had no idea that first night if he would be going out in the same place he had come into the world. 

Fortunately, after traveling every single day back and forth to the hospital, with much pleading and prayer, vowing that if possible we would gladly trade places with him, he was in remission.  He came home to heal from the protocol harsh round of chemotherapy on Mother's Day and my birthday. What a gift to me, to us.  But this was far from over.  This would be one Camino journey we would wish on no one.  But on a journey, we were.

In order to keep him in remission and to keep the leukemia from relapsing, we were told he would need a bone marrow transplant.  A very dangerous procedure.  Once again, we found ourselves spinning out of control in this nightmare trying to accept what is and live in each little moment being thankful for blessings and miracles so far. Taking one baby step forward at a time when our hearts were broken wide open was not an easy task.  Once again, as on our Camino, we each held the other up when one of us was at our lowest.

Our son would be home for three months and another two rounds of maintenance chemotherapy to keep him in remission while the worldwide search for compatible bone marrow commenced.  His sister, who would have been the first choice was not a match. Our almost 6 foot tall son came home on a 116 pound frame looking ninety years old, bent over and weak, moving at a snails pace, but sure enough slowly began to heal, grow back hair and put on weight in that beautiful mountain summer. 

Then the next miracle happened.   A perfect HLA match, based on a person's hereditary DNA, was found in the registry, in a young man living in the UK who turned out to be 4 months younger than our son.  His transplant date was set.  August 20th. My heart continued to break amidst hope and trust, seeing him have to go in for the "test dose" of a very harsh chemo that would all but rid him of his own flawed bone marrow and subsequently bring him back to death's door in order for his body to accept the new cells. This was our baby, in the body of an independent able bodied man...but doing a hero's duty. It was almost too much for us to bear.   As he bravely packed his bags to enter the hospital environment for the next 120 or so days, it was silently excruciating to us. He had gotten so much more healthy over the summer and seemed healed. Normal.  It all seemed a cruel joke. We had no idea what the future would bring. Did we all make the right choice?  I just had to depend on the miracles and blessings that had happened continually up until now. I had to continue to trust, no matter what.  I am learning more about this process than I ever wanted to know.

The young donor in England met the schedule set for transplant.  Another miracle.  Sometimes patients are held at the mercy of the donor's schedule and have to continue maintenance chemo and they sometimes lose remission status, subsequently disqualifying them for transplant.  The type of donation our son needed would not be of the simple kind if there is such a thing. Some donations require the harvesting of stem cells after a round of shots to pump up the number and viability of the donor cells. Our son needed actual bone marrow cells.  The donor would be required to be sedated and bone marrow harvested from his hip bones on two sides.  I am still not at the point where I can describe this process without tears.  Who does this for a complete stranger on the other side of the ocean?

After a month in the hospital and three months in hospital housing to be near the 4 times weekly doctor's appointments, our son is now almost a year post transplant, off of all immunosuppressant drugs and doing well. The biggest miracle.

It's very hard to make plans nowadays and the post traumatic stress and the pain in our hearts is getting a little better.  If there is anything this experience has taught us, it's that we have learned that we must make the plans, and we must not put off our dreams a single moment longer, for those moments as is this life, are never promised to us.  We will journey once again on the Camino de Santiago, this time much different than we were on the last.  I for one, will carry all the way, an energy of gratitude for this life we get to experience, good and bad, each and every step. 

Bom Caminho~

If anyone has been touched by the bone marrow donation information, I implore you to get on the list to be a bone marrow and/or stem cell donor.  All you have to do is a simple cheek swab. Also you can donate stem cells from your baby's umbilical cord.  Cord blood also saves lives in this same way for many different blood cancers.  It gets thrown away otherwise. I wish I had known this before when I could have helped in this way.  I would have in a heartbeat.

Be The Match is a worldwide organization who works to find matches for people in need.  Love Hope Strength is also a great organization that goes to concerts worldwide to find people (you must be between 18 and 44 years old to qualify for donation). Again, it is a simple cheek swab.  The chances that you would be a match for someone is like 1 in 500. But what if you were? Wow! You would have given someone a second chance to live their life.   Please google these organizations and get a kit.  Be a hero.  Seriously think about what you would feel like if you were able to help in this way.  Someone's life depend upon it.