The Journey Begins. . .

I learned something about 2 weeks after Joshua had his brain tumor resected.  I can't use the word removed, because the truth is, it wasn't all removed.  He still had a golf ball size tumor in his head after a grueling 15 hour surgery where he lost his total blood volume 2.5 times.  He was teetering on the edge for two weeks after that surgery and one night, we really thought our sweet boy was leaving us.  The looks on the faces of staff told us things were going in the wrong direction, and quickly.  I had taped pictures of Joshua's beautiful face on the wall at the end of his bed, to remind everyone that entered his room, that the swollen, shave headed little boy in the bed with the tubes coming out of everywhere was NOT the boy I had brought them.  I reminded them that night that he was to be returned to me in the manner in which I brought him and our wonderful PICU doctor said "I am doing everything in my human power, and calling upon all the other powers that be, to do just that."  Joshua survived.

About two weeks later I walked in the cramped ICU room after taking a brief moment to run to the bathroom.  Peter was talking to someone I had not met yet.  She introduced herself and I sat down.  I tried to listen to what she was saying, but my brain was stuck on something. . . it was stuck on the word, oncologist.  Why did we need an oncologist?  My son had a brain tumor, not cancer.  I really did try to listen and follow what she was saying.  Peter clearly was understanding her and that was even more frustrating.  The words were coming out of her mouth, but they made no sense.  It was like listening to the teacher on Charlie Brown.  Wawawa wawaawwa.  And then, again, I lost sense of who took over my voice. I heard myself asking this woman, who clearly was there for good and not bad, to leave immediately.  I heard myself saying that my son had a brain tumor and once we were out of the hospital he would be fine.  He didn't need her help, the doctors were doing fine here in the ICU.  I knew that what I was saying wasn't right.  I had been caring for my chronically and often critically ill daughter for 3 years, I had the medical knowledge.   I knew that she had information I NEEDED to hear. But, it wasn't time.  It wasn't time to admit this was just the beginning of a fight I had no desire to be in. 

That night Peter and I ordered a pizza with another couple who had a child in the PICU as well.  I went down stairs with this sweet mom to get the pizza.  As we entered the elevator, pizza in hand, a mom and her adolescent son entered with us.  He was bald, gray and shaking hard.  His mom had his pillow in her hand and was rubbing his shoulders, telling him he'd feel better soon.  I looked at that child and saw what we were facing.  I saw the bald head and the gray skin and all of a sudden the shock, terror and overwhelming fear of what was still yet to come hit me all at once.  I knew I was staring at that poor child with disgust on my face and the smell of the pizza must have been just awful for him.  I am still riddled with guilt for that initial encounter I had with this child, whom I eventually came to know well.  As I exited the elevator, three floors below where the mom and son were headed, I cried and left, giving the pizza to my friend, to go and have my personal pity party. 

The next day I faced my demons head on.  I asked my friend to join me as I took a "tour" of the pediatric hematology/oncology floor.  I was surprised at the brightness of the floor.  It was wider than the other pediatric floor.  The rooms were open and inviting.  A small child with no hair came flying out of a doorway and jumped on the base of an IV pole carrying no less than 4 pumps and far more bags of "stuff".  This child was no more than four years old, but clearly was used to this process.  As we walked down the hall, holding each other's hands (she had no preparation for this experience either), I looked into each and every room.  Cancer does not discriminate.  There were cribs for babies and game stations in front of teens.  There were preschoolers in the playroom and school age children sitting in the day room doing crafts.   I left that floor far more prepared than I had ever imagined, because that floor was filled with kids fighting!  They were not lying in bed dying.  I needed that visit, and just a week later we finally made it to our new home on 7H where we were welcomed with open arms.  I also came to terms with the fact that my son had both, a brain tumor and cancer. 

March 4, 1998 A Brave New World

“He’s running funny, don’t you think?” I asked Peter as we were walking down the path along the lake.  “Maybe he needs to get out more, I’ll talk to Peggy (our daycare mother) and have her take him out for more exercise.” 

That was the middle of January, 1998.  Joshua was 28 months old.  Over the course of the next three months odd symptoms occurred here and there.  He had some vomiting after eating chicken nuggets; complaints of mouth pain; tripping without warning; nothing alarming.  Nothing concrete that said. . . uh oh.  Until, March 1, 1998.  That day I was called to his daycare because he had “beaten up” several of the children and then proceeded to fall out of his highchair for no apparent reason.  When I arrived he was crying about his mouth.  I called the dentist and set up an appointment for the next day.  I then called his pediatrician who said to come right in.  We went.  I told him about the day and the fact that we had witnessed him tripping more.  The doctor threw a piece of paper on the floor and asked Joshua to pick it up.  Joshua stood up happily and then staggered to the paper, bent over to pick it up and missed it completely.  I was alarmed.  The doctor remained calm, but stated that if “anything changes at all, call him immediately.”  That was a Friday.  That Saturday I took him to the dentist, nothing presented itself to explain the pain.  We then took the Annette and Joshua to a big play facility where there was a ball pit and lots of tubes and slides.  The kind of place where Joshua should have had a great time, yet he didn’t.  He was subdued and sat in the corner, away from everyone.  Annette was crawling all over and having a wonderful time, yet, her little brother, felt feverish and lethargic.  We came home.  I thought to call the doctor, but chalked it up to a virus.  The next day, Sunday, Joshua woke up wonderful.  He was bright eyed, happy and full of life.  My mother came to visit and we all drove out to see my grandmother.  It was a wonderful day.  That evening, as the kids played and my nephew and Joshua ran through the house, I noted how it was clear Joshua couldn’t make the turns as quick as his cousin.  He was running into the doorways, bouncing off happily, but definitely having judgment issues.  Everyone went to bed without a further thought.  The next was business as usual.  I went to work as a speech therapist in the local city school district.  Peter left for work as well and I dropped Joshua off at daycare while Annette went to school with her nurse.  Mid-morning I called the pediatrician to let him know that after Saturday, all seemed to have worked itself out.  He was not nearly as comforted as I was and asked that I bring Joshua to the urgent care center the next morning at 9:00am for a CT scan and a lumbar puncture.  He was alarmed that Joshua continued to have “ataxia” and the fever was worrisome.  He wanted to rule out viral meningitis.  I hung up the phone in shock.  I had no idea what had just happened.  I called to tell them all was well, and instead, I was told things may be anything but well. 

 

A week after leaving the PICU and his resection.

That night was awful.  Joshua literally cried all night and refused to let us lay him flat.  That morning, for the first time ever, as I was dressing him to meet the pediatrician, my sweet baby said in his tiny shaky voice and tears in his eyes, “my head hurts.”  I called the doctor right away and told him I was taking him to the ER instead.  My heart knew he had meningitis and we had wasted so much time.  I grabbed my mom, threw a small bag in the car and left for the ER. 

We checked in, and then waited.  I watched my sweet boy waddle around clumsily but happily.  He was playing in front of the sliding doors and making them open and close.  We had waited for two hours when I looked at my son and suddenly realized he was no longer able to use his left side.  He was holding his arm to move it and he fell as he tried to make the doors open.  I grabbed him and screamed at the lady behind that lovely piece of thick plastic, that protected her from my motherly rage, and told her that my baby was dying of meningitis as we waited out here!  The doors flew open, everyone was handed a mask and we were ushered immediately to a room, where I was grilled on why I thought my son had meningitis.  I stood him up and asked the doctor to have him walk to her. . . he fell, three times trying.  Then she handed him a coloring book, which he promptly took with his right hand; Joshua was left handed.  She asked me to please wait a moment while she arranged for a scan of his head.  Peter arrived as we were attempting to give Joshua the “sleepy medicine” which tastes vile.  He helped me hold Joshua as I squirted that liquid acid in his mouth.  Joshua yelled for a bit, but his strength was getting weaker and his cry softer.  It took 2 hours for the medicine to actually kick in, so I told Peter to go back to work and that I’d call him if anything was going on.  He walked out after kissing Joshua softly on the head.  15 minutes later I was in the CT room with Joshua sleeping peacefully getting pictures of his beautiful brain.  As they tech was finishing, he asked me “Is he on any meds at all?”  My puzzled look must have been all the answer he needed. 

As we walked back to our room, I could feel the looks of the nurses but didn’t realize what I was feeling.  The doctor walked in immediately after us and sat with my mother and me.  She put up an x-ray like picture on the light box on the wall.  There, was my first glimpse at the horror in my child’s head.  A tumor was taking up all of the right side of his brain, pushing everything into the left side of his head.  The Pediatric Intensive Care team was on their way down. 

 

I walked quietly out into the hallway and stared at the phone.  I had to call Peter and tell him his son had a brain tumor.  I don’t know where the sounds or words came from.  I don’t have any idea what I was saying, but I remember screams and a nurse holding me as I fell to the floor.  I remember being asked if I wanted something to help with the anxiety or if I needed to go outside.  I needed none of those things.  I needed to go back in time three months, to that day I saw my son running funny. . .