June 14, 2015

Grief and Fulfillment: Part THREE

June 14, 2015
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A funny thing happens after publishing a post.  A rush of unwritten memories come flowing in.  Things that happened, people that were there and a lot of "remember whens" knock on your brain.  

For example, before bringing home our two boys I owned a cafe with my best friend.  Fancy That.  A cafe, bakery and takery.  I often forget that time in my life that I owned a business, worked 18 hour days, thrived on deadlines and 400 cookie orders, catering weddings, building relationships with regular customers, and becoming so delirious from long hours that everything seemed hilarious.  Not many can say they started a business with their best friend and it was and still is successful.  We had to sell Fancy That after receiving the news that Mason was sick and would spend several months in a hospital.  My best friend also had a baby and longed to move home to be with her family.  I miss Fancy That. 

Before bringing home Parker and Mason we were host parents to exchange students from France and Bolivia.  There is a reason for everything.  Our exchange students enriched our lives.  To this day we are in close contact.  We were witnesses in a wedding, God parents to a baby and have formed forever relationships like family.  Mariella, from Bolivia, wasn't our official exchange student but we brought her under our wing anyway.  She turned out to be a precious and crucial part of our lives upon bringing home our babies.  She could speak Spanish to Parker, take care of him while we were in the hospital and serve as a shoulder to lean on while Mason was sick.  I needed her and God knew it. 

Mariella and Parker.  An exchange student then but family to us now.
As if my former life disappeared, it felt like I only started to truly live once I became a mom.  But my heart ached.  My head hurt.  I was in panic mode 24/7.  While in Ft. Worth I received therapy from a PTSD therapist via telephone to help overcome the recurring nightmares of the time I had to hold Mason down while a nurse practitioner cored out marrow from his back.  My mom could hear his screams from down the hall.  Looking back I don't know why I agreed to hold him down.  Why they didn't put him to sleep for such a painful and traumatic procedure?  I remember waking up in the middle of the night and rolling over on to a pool of blood from a small scratch on Mason's ear. Countless near death experiences haunted me and yet we still hadn't began transplant...

Part Three:

Weeks passed and Mason began to recover.  He finally woke from his coma and once he was able to breathe on his own we were moved to the oncology floor of the hospital. The hemorrhage that covered a fourth of his brain compromised his ability to sit up, crawl and swallow solid food. I was as devastated as I was thankful. We continued to settle in at the Ronald McDonald House and met other parents fighting for their child's life.  We watched babies and children come and go.  Some didn't make it.  Some did and got to go home.  It was like living in another world, trying to adjust to feelings that could take your breath away, shatter your heart, challenge your faith and make you question things you never had before.  Our routine revolved around keeping Mason alive while providing any sense of normalcy for Parker.   I felt so isolated yet so surrounded.  I remember taking breaks to catch some fresh air and sunshine outside the hospital.  To this day, the October sun strikes me the same way as it did then.  The smell of turning leaves and the copper sun setting earlier and earlier brings me right back to sitting on a bench outside Cook Children's Hospital.  

After waking up from his coma we surrounded him with soft toys, even a sponge.
Once a cord blood match was secured for Mason we were admitted to the transplant floor.  Isolation.  Leaving the room to get coffee became my activity of the day.  Chemo began and the fear set in.  Mason was so sick.  He would have fevers of 105.  He threw up countless times a day.  We was miserable and angry.  I could do nothing but assure him it would be worth it.  Did he understand?  Did he know why so many needles poked him, why we couldn't leave the room, why his body ached?  My mom stayed with me.  Together we made the best of it.  Strangers from a church offered to help by sitting with him so we could take breaks and eat something other than cafeteria food.  My mom bought mounds of fabric and made blankets for Mason and so many other little patients.  Parker would visit through a glass window and Big Dog would spend 3-4 days a week with us.  

And then one night, while Mason was "on death's door", his doctor came in and asked me to sit down.  She had news that would shake me, that would put me in a world of despair.    I could not comprehend what she had to tell me.  Mason's cord blood had been given to another patient by mistake.  Mason's chemo was stopped immediately and life saving medicine rushed into his body.  The other patient passed away.  It was a nightmare full of denial, fear, and helplessness, and guilt, and anger, and vulnerability.  It was devastating for both families.  I still have a hole in my heart for the patient that was supposed to receive life but instead died.  That night was darker than any other night.  I met with the mother who's son passed away after battling leukemia twice.  I was terrified that she would hate me, lash out at me.  But she didn't.  She was full of grace and immediately comforted ME hoping Mason would survive even though her son did not.  To this day, her comfort is the deepest example of selfless love and human grace I have witnessed. 

We waited in the hospital and through Christmas waiting to hear of a new match.
Mason fought.  We all did.  The wait for another match began.  In that time he suffered another nose bleed that nearly took his life.  We were back in the hospital because he had no immune system and had a constant dependence on blood products.  He needed a match.  He needed new life.  Time was running out. Two months passed and finally, another match was found and chemo prep began once again.  We held on and waited for Transplant Day.  

Transplant Day
Much to our surprise, Mason's chance at life was contained in a tiny bag with a cord that hooked to his body.  It all came down to one bag, one cord and a whole lot of waiting. Friends and family from all over came to peek through a window to witness the miraculous event that so many had prayed for.  The "Bag of Life" slowly infused in to his body and we all watched and waited.  Would his body accept the life giving cord blood and cure him?  Things became much worse before they got better.  Mason's fevers were so high I could barely hold him he was so hot.  He contracted VRE, MRSA, and RSV.  His body was tired but his fight was mighty.

Friends and family watched from outside Mason's hospital window as he received his transplant.
It didn't take long for Mason's hair to fall out from chemo and his body nearly double in size from the steroids 
My dad visited Mason gowned, masked, and gloved.  A calendar hung in the background counting down the days that would determine whether or not the transplant took. 
People we had never met sent Mason hats of all kinds to cover his bald head. 
Mason had to stay in a tent for 18 hours a day for RSV treatment.  It was pure torture of the longest hours and days.  He really was a boy in a bubble.  
More than twenty days passed in isolation on the transplant floor.  Mason conquered all kinds of infections and viruses and overcame every obstacle like a warrior.  All the love and answered prayers from others defeated death and Mason won.  We celebrated the day Mason got to break out of transplant with an Elmo cake, balloons and new toys.  I learned about all the medicines he would need to take via his feeding tube. The nurses carefully taught me how to flush his pic lines and give IV medication. The amount of medication was nothing short of overwhelming and intimidating.  I was constantly fearful of doing something wrong.  I wasn't a doctor or a nurse.  I was just a mom.  Plans had to be made to make sure everything was as sterile as possible while we were released to the Ronald McDonald House.  He wasn't allowed to be outside or in public without a mask.  And once again we waited.  We waited to make sure he would remain well, his numbers would continue to increase and pray that finally going home was on the horizon.  

Parker finally got to visit Mason up close and personal in isolation on "Break Out Day"!
We were all amazed at Mason's physical strength to walk out of isolation.
What was supposed to be a time of relief and healing actually became a time of navigating uncharted territory. I was scared to be without the monitors tracking Mason's every pulse and breath.  I actually missed the sound of the IV pump, the beeps and alarms.  I couldn't sleep.  I needed those noises.  I was consumed with anxiety, panic attacks, and terror that we weren't in the clear, something would go wrong.  What were we supposed to do?  How would we spend our time?  What was going to happen to the other children on the transplant floor?  We were out of isolation but confined to the Ronald McDonald House. So I organized.  I made spread sheets of his medication schedule, arranged our room to mimic a home, I cleaned and sterilized, did laundry and walked Mason around the Ronald McDonald house in laps on the two floors.  I was terrified to be alone.  If my mom left for home 3 hours away, I needed someone else with me.  Big Dog came and begged the doctors to release us to home.  Our real home.  Our home we hadn't lived in for 7 months.  We agreed to bring Mason back twice a week for clinic appointments and to come immediately if he spiked a fever.  So we packed up and "moved" home.  Home.  

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