Our Story of a Syndrome: Terminal-- Part Two

By late afternoon it was obvious Rhyse wasn't going to feed.  Not terribly concerned the nurses informed me that babies are born with all the extra fluid in their cells to keep them hydrated in the first few days of life.  If he went 24 hours without feeding, he would be ok.  But that wasn't OK with me. I knew that a baby's natural inclination to feed was immediate.  Not 24 hours later, unless something was amiss.

Exhausted and whirling from the birth and the high of delivering another baby (one of those, "over 40 surprise babies") I was so incredibly excited to add a boy to my petite passel of two girls, Leah who was 8 and adopted from Kenya and Maggey who had just turned 5.  

By evening a few family members had come and gone, husband went home to be with our girls, and I was left alone with Rhyse, ready to sleep--or at least make a valiant attempt.  My husband and I had filled out our, "celebration lunch" form for the next day courtesy of the hospital, complete with steak and salad, and I was ready for a good night and a two day lay in.

The failed feedings continued until late in the evening  increasing my anxiety, but midnight was fast approaching and I was beat with emotion.

A nurse came in to take Rhyse to his protocol blood sugar check, assuring me he would be back by my side in an hour.  In two hours the nurse would wake me up for another feeding, well failed feeding probably.  My lights were turned off. Finally. Though I tried desperately to stay awake until Rhyse returned, I succumbed to sleep.

A few minutes before 5am the third shift Doctor walked into my room, turned on my light and startled me out of a deep, deep sleep and said he needed to "talk to me."  

With blurry eyes and slow brain I tried very hard to make out the clock, look around the room for Rhyse, and look at the doctor all in one fell swoop.  Through the fog I instinctively knew my life was on the verge of changing. My son never came back from the mid-night blood check, no one woke me up for a feeding, and doctors do not enter your room at 5am for any reason but to deliver unwanted news.

I will never forget his words.  "Your son is very, very ill. His condition is deteriorating (failing to thrive) and his blood counts are bad.  His white blood cell counts are in the 150Ks and blood platelets are 9K.  The exact opposite of what they should be.  There is one probable explanation for this: Leukemia.  Your son may very well be terminal, but we are sending for an emergency transport to Helen Devos Children's Hospital (closer to my home than the hospital I was in).  We are not equipped for this kind of situation."

The doctor walked out of the room and I never saw him again.  His shift was over.

After all those words quietly slid out of his mouth I was overcome with nausea.  I burst out of my bed and dashed to the bathroom and puked.  No pretty way to say it.  I had never tossed my cookies from emotion in my life: but now I have.

Alone and hardly able to talk I called my husband on the phone and told him to come now instead of later. Rhyse was sick. Very sick.