Heather Cole--The Happy Ending(3)

Return to Hospital

Checking back into the hospital is no easy task when you had just checked out three days prior.  Rhyse was frantic and unwilling to be taken out of his stroller, screaming and shaking from fear.  The minute we arrived on the tenth floor he was ready to fight tooth and nail to get back on the elevators.  He pointed at the doors with all he was worth, and it was a wretched feeling pulling him in the opposite direction.

By the time we arrived on the tenth floor the entire staff had heard about Rhyse’s bout with the IVs a few days prior, and everyone was nervous about repeating the incident. I did, however, take great comfort in being on the tenth floor—my ‘second home’ since Rhyse’s birth.  If there’s anywhere in the 12 story building I feel most comfortable and encouraged and loved, it’s on the hematology floor.

After waiting over and hour for any signs of life, Mary and Kris walked into the room, two nurses that have been with Rhyse since birth.  These ladies are fantastic.  But what gave me hope and comfort was their attitude and actions.  They stormed into the room saying, “Mary and I just prayed and asked Jesus to help us get this stick the first time and we believe it!”  Mary is the nurse I had asked for while in the ER, but hadn’t been on shift that day. And would you believe, she did it!  The very first try was successful!  They will never know how much their prayer and their words meant to me.  Those tiny words, “thank you” aren’t nearly enough. A few minutes after the stick, Dr. F walked into the room, Rhyse’s primary hematologist, wrapped me up in her arms and just hugged.  I forced back the tears, thankful that Rhyse had such an incredible team of doctors and nurses.  We were in a holding pattern of complete relief behind one door, or terrifying cancer behind the other; which door would I be thrust through?

After the IV and blood draws Rhyse was admitted to the ninth floor to begin preparation for a biopsy and bone marrow aspiration on Wednesday.  His platelets were at a 12 month low at 53k and he needed at least one transfusion during the night in order to have the surgery. Jon arrived after work and we spent the evening in casual conversation, trying not to focus on the worst.

Late that evening I left for home, leaving Jon to spend the night with Rhyse so I could go home and be with my girls, and get some well overdue sleep.  We both know that sleep deprivation and stress are a lethal combination, so we always make sure we take turns sleeping at the hospital.

Surgery

On Wednesday morning I returned to the hospital anxious for the surgery to get underway.  Fortunately he was scheduled fairly early so the wait wasn’t too long.  I don’t know much about biopsies and what information the doctors have immediately, and how long it takes to get comprehensive results.  But waiting seems to be the underlayment of our lives with a child who has a genetic mutation.  No fast-food answers, ever.

After a couple of hours we were called into the parent meeting room to meet with Dr. D, the surgeon who had just finished the biopsy.  He handed us a picture of the procedure, and explained that although he didn’t have any immediate answers, neither did he find what he expected.  We were left puzzled by that comment. I stared at the photo page he handed me, trying to figure out if this was a good ‘unexpected’ or a bad ‘unexpected.’

As soon as Rhyse was awake and stable we were escorted back to our room on the tenth floor.  While I concentrated on comforting Rhyse who was in great pain from the three incisions, and add on circumcision we requested, nurses, doctors and surgeons flowed in and out of the room to do their evaluations and vitals.  Apparently while being under the anesthesia some fluid pooled in his lungs and made it difficult for him to breathe. His chest and tummy were thrusting up and down, trying to get enough oxygen to function.  The nurses were very concerned.   Soon the order was given to start him on O2.  Slowly his sats climbed back into the 90s.

As we have experienced in the past, Rhyse’s ability to handle pain is slim to none.  With Rhyse on morphine, and then vicodin, he was slipping in and out of a drug induced stupor. As crazy as it sounds, being partially sedated with pain meds is a blessing after surgery.

Like the previous night, I went home to sleep while Jon remained at the hospital.  My girls need mom just as much as my son so I’m always trying to find that balance during Rhyse’s hospitalizations. 

Thursday morning I arrived to find that Rhyse’s bloods had come back with elevated liver cells, but the bone marrow aspiration was normal: two conflicting results.  Why elevated liver cells?  The doctors never did figure this one out.

Hearing that the bone marrow results were normal was a huge mental relief.  In my mind if the bone marrow wasn’t showing early blasts, then maybe the tumor was going to be benign.  At least that was my hope and my prayer. 

As the mental battle for peace waged on we continued to hold tight for the big results to come in.  Mental pictures of chemo infusions, more surgeries, more biopsies, a port, and more waiting were beating me over the head.  “Take every thought into captivity.” My mantra. My Faith.

When I woke up Friday I was both excited and terrified to know the final results of the biopsy.  The previous week’s emotions had played havoc on my outlook on life, and I needed a peak into hope.  I wanted to put the word, “Neuroblastoma” away forever!  I wanted to go on living with the mundane ER visits, and sickness, and complications; just not cancer!  Selfish? Oh, yea.  There are a few times in life where being selfish is indeed warranted.

Results

Friday afternoon Dr. F, Rhyse’s primary hematologist walked into Rhyse’s room with a big smile. She walked up to me and hugged me and said, “it’s not cancer!”  We don’t know exactly what it is or where it came from or what we are going to do medically going forward, but at least we can tell you what it’s NOT!  She was so excited she asked for the Dr. S’s phone number, Rhyse’s Pediatrician, so she could personally tell her the wonderful news!  When she hung up she said there were tears on the other end of the line.

Jon and I hardly knew how to act.  For seven days our emotions were blasting full steam ahead down a dark, dreary, scary track and back again!  You would think I would have jumped up and down with joy.  But I didn’t. I found that putting my mind in reverse was harder than I anticipated.  I smiled, but my mental anxiety took much longer to dissipate.  I was relieved, but I found myself needing to sort out my emotions one by one before I could fully grasp what I had been told!

For the remainder of the day and into late Saturday afternoon Rhyse was in recovery mode, and so were we!

Rhyse was released Saturday afternoon and suddenly everyday life had to begin where it left off a week earlier.  If there’s such a thing as mental whiplash, that is it! Packing up and leaving the hospital with more medical trauma behind us, more medical jargon learned, physical scars, and emotional scars was once again life changing.  With each new medical issue we confront we increase the foreign language only a few speak: the language of pain and fear, joy and sorrow, blessings and victory—all wrapped up in a child with a syndrome. Maybe I'll call it the Language of Noonans.

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