National Kids Cancer Ride

Day 13 – Kingston Ont, to St Augustin Que – A Day in the Life of

A Day in the life of ……

“Mom, when do I get to go home? I have been in the hospital now for another month & I really miss my friends. I don’t want to get another finger poke- I am getting them almost every day.  Is Dad coming to visit today after work? I really miss him.

Then the nurse came in the room.  She was dressed in what looked like an alien suit. It was chemo day again.   She was so gentle in her demeanor but she had a bag of chemicals that were about to pollute his fragile body. The chemicals that ravage the immune system & often take them to the brink of death over time.  Today was another one of those days of dread. First the nurse handed him a container of pills to take. He swallowed the array of pills, gagging as he tried.  He timidly sipped on water through a paper straw from a paper cup just trying to get them down. Then she began to access the port slowly (The port is an Implantable catheter made of made of silicone that was surgically implanted into his chest just days after he was diagnosed with Leukemia.)  He knew what was probably going to come next within the next few hours. It had happened before.

“Mom- I need the barf bowl!!! Quick!”  Blechhhh (vomit sound goes here)…Blechhh (again).  Blechh (again).  After a while of this, he was drained. He looked gaunt & tired.  He laid there quiet with an empty look in his eyes. No where to go. Living in a bed. No friends coming to visit as the hospital was over an hour away from his hometown & they were all in school.   His back was still sore from the lumbar puncture that was done in his spine a few days before.   Then the gravol kicked in from all the barfing. Sleep came like a thud. When he woke up he was groggy & alone. Mom had gone down the hallway to make a private phone call to her husband to see what time he was coming.  Dad was on his way. He left work early because he was stressed to the hilt & was desperate to see his son. He couldn’t stand being away but he had to keep working to pay the mortgage because Mom had to stop work when the horror began.

By the time Mom got back to the room, another nurse was in there giving him more pills to swallow.  Ten minutes later the hospital porter came in to take him down in a wheelchair for an chest xray. He had just gotten over pneumonia the week before…another side effect from having a compromised immune system. The pneumonia was bad. He was in hard shape for a few weeks. At one point it was so scary that the surgeon was going to put a hole in the side of his lungs to drain out the fluids…at the last minute the surgical team had decided that it was too risky. His immune system was too weak & the procedure came with great risk…so he had to wait it out & they all hoped that the pneumonia would not kill him.  The chest x-ray was clear at last.

They wheeled him back in the wheelchair to his room. His hair had been starting to fall out on his pillow gradually over time & you could see his scalp in chunks. His face was what they call “moon-faced” – large and round…a side effect from the doses of steroids (prednizone) that he had to take. The prednizone also caused mood swings & today he was feeling blue. Yet he didn’t complain. He just took whatever was put in his path. He didn’t know any better. He didn’t have a predisposed concept of what could possibly come, unlike the adult would. He did what he was asked of -he just wanted to live.  He wanted his parents to be happy & stop crying too.

Lunch was delivered but he had no appetite again. It sat there on a tray until it got cold & someone came to take it away again. His weight had dropped by 6 pounds over the last 3 weeks & he was so tired. He tried to stay awake because Dad was coming within the hour. It was earlier than usual for Dad to come and he was so grateful to know he was on his way. He looked at the clock to figure out when his Dad would arrive. The clock was one of the few things he got to look at daily as the room was pretty stark. He kept staring at it.  An hour later Dad burst into the room with a look of stress upon his face. They hugged hard & long. Dad had tears in his eyes when he saw his youngest son. Dad bit his lip so his son would not see the dampness from his eyes about to spill out. Then Dad tried to act normal & began to joke about the slow drivers he encountered on his way there. It wasn’t funny but they made it funny. They treasured the moments together as Dad only had a few hours before he had to make the long trip back home because he had to be at work again at 6 am in the morning. Mom went down to the Ronald McDonald room to make a meal for the three of them out of the rubbermaid bin of food they had hoarded in the room as they were all so sick of the hospital food. The Ronald McDonald room had a kitchen for patients & parents to use. It was a great reprieve from institutional food on occasion. Today was such an occasion. Dad was coming & they just wanted so desperately to feel some sense of normalcy in the chaotic world they were thrown into. She brought the food back upstairs to the hospital room. She placed the food on the small table with wheels that was beside the boys bed in hopes that her son would get something in his belly. Her hopes were dashed when he pushed it away. Mom was feeling helpless in how to get him to eat. His weight scared her. She knew he needed all the reserves he could get but his appetite was nil. So they ignored the food & just talked until Dad had to leave. Dad did not want to leave. He had no choice & they hugged hard & long again.  Then the door closed & the room became silent again. Mom tried to reassure her son that Dad would be back again tomorrow after work. He had promised no matter what.

Then darkness started to come. He only knew it was getting dark because the lights were all on in the room. Some lights were always on at night…even when it was time to sleep. Always one light on somewhere. It was hard to sleep. Machines were pinging right beside his bed.  The night nurse came in & attached another IV bag into the IV port that had been placed into the vein on his right hand. His hand was sore because the IV port had been there for a few days. It stuck out on a bit of an angle & pinched his wrist when he moved his hand. He hoped they would take it out soon but his fluid intake was poor & he needed the fluids to flush his system & to flush out the chemo that had been pushed into his veins hours before. The IV machine made constant dinging noises every few seconds as the fluids were pushed again into his veins. This went on for over an hour. He wanted to sleep again but the noise was irritating to his steroid induced system. The light by the nurses station by his bed was dimmed but it still shone in his face.

Mom was tucked into the corner of the room on a single foam mattress that had become her daily home. She was ten feet away from his bed. They had no privacy.  Mom sat in the silence with her own thoughts of worry & dread. She tried to act normal & reached deep into the back of her mind to bring out positive thoughts &  things to say to her son, but all the while her heart was racing with daily fear.

They both laid there in silence for a while in their separate temporary beds. They didn’t know when they would get home again. Then the night nurse came back in & disconnected the IV bag from the IV port. She left the port in because the boy was still weak & in need of rehydration. He was still nauseus too, but not as badly because the gravol had made a small dent in the nausea.  The nurse reminded them both that tomorrow he was getting an MRI done in the morning after Doctor rounds-another procedure – a new one to them. Just one procedure of many to come. Mom told her son in a loving voice that she loved him to the moon & back. She also told him that his brother & sister would be able to visit tomorrow when Dad came again. Then the nurse left. The boy closed his eyes with questions in his mind that he was too scared to ask about. So again they both laid there in silence in their own silent but different fears.  Tomorrow was another day with other things to come….some things they didn’t want to know about…..