by Rinyu, Beth
“Look at you, up and working already,” I said with a smile.
He immediately put his phone down. “I told you I would be fine. I’m just waiting for my discharge papers so I can get the heck out of here.” He bent down to tie his shoe and flinched in pain. He tried to play it off when he knew that I had seen.
“Did they give you pain medication?” I asked as I sat down on the chair next to his bed.
“I don’t need it,” he said in a dismissing tone.
“Well, by the looks of it you are in some pain,” I insisted.
“What’s going on with Matty?” he deflected.
“He’s sleeping right now, just waiting to get all his tests back.”
I looked at him appreciatively. I knew if it weren’t for him, Matty would still be on the list waiting for a match.
“Thank you,” I said.
“For what?”
“For possibly saving Matty’s life.”
He looked at me not saying a word. The silence was finally broken when the doctor who performed his extraction entered the room. His name was Dr. Young. I had met him previously, at one of the many meetings with Matty’s medical team.
“Well you know this is against my better judgment,” Dr. Young said to Julian. Julian looked as if he were paying him no mind. He was just waiting for him to hand over the discharge papers. “But I do feel a little better knowing that you have Dr. Vallia here to take care of you,” he continued.
Julian looked at him and raised his eyebrows. “I’ll be fine; I don’t need anyone to take care of me,” he said contemptuously.
“I can assure you that you’re going to be in a lot more pain tonight,” Dr. Young warned.
Julian quickly signed the discharge papers. He shook Dr. Young’s hand and walked out of the room to go see Matty while I stayed behind.
“I’m sorry, he’s just stubborn,” I apologized.
“That’s quite okay,” Dr. Young said as if he understood. “Just make sure you’re around to keep an eye on him tonight.”
“I will,” I reassured him.
“Good luck to Matty tomorrow,” he said with a warm smile.
“Thank you,” I said, walking out the door.
I made my way to Matty’s room. I sensed that Julian’s nerves were finally getting the best of him. He was sleep deprived, in pain, and worrying about Matty just as much as I was. Matty was awake. I heard his voice even before entering the room. He and Julian seemed to be having a serious conversation. I peeked in to see Julian sitting on the bed next to him. I stood just outside the doorway listening.
“Am I going to die?” Matty asked sadly. His words made my heart sink.
“No Matty you’re not,” Julian reassured him.
“Well my mommy cries a lot. She thinks I don’t hear her but I do. So she must think I’m going to die. I don’t like it when she’s sad,” Matty said.
“She’s not crying because she thinks you’re going to die. She just gets sad because she loves you so much and doesn’t like how sick this medicine is making you,” Julian explained.
“Well if the medicine makes me sick then why do I have to take it?” Matty asked sweetly.
“Because even though it’s making you sick right now eventually it’s going to make you all better. Did you ever take medicine for a really bad sore throat or an ear ache?”
“Yeah, Mommy always gets mad at me because I try to spit it out. It’s really yucky!”
“But even though it tastes yucky it makes you feel better right?”
“Yes,” Matty answered.
“Well this medicine is kind of like that but only instead of tasting yucky it makes you feel yucky before you get better.” Julian explained. I remained outside the door unnoticed. I was amazed with the way Julian was handling the situation.
“So am I going to get better?” Matty asked.
“Of course you’re going to get better,” Julian answered.
“Oh,” Matty said sadly.
“Why do you sound so sad about that?” Julian asked, surprised.
“Because once I get better, you’re going to go away again,” Matty said as he began to cry.
“Matty, I will never leave you, I promise.”
“But don’t you have to go help other sick kids far away, once I get all better?” Matty asked sweetly.
“I will only be in Chicago and you’re going to come and see me all the time. You’ll have two houses, one in Chicago and one with your mom.”
Matty began to cry. “But I want you and Mommy to live in the same house.”
“Mommy has her job here and I have mine in Chicago,” Julian tried to explain.
“Don’t you love my mommy?” he pleaded.
I didn’t know what to do, unsure if I should interrupt and help Julian out. I waited a couple seconds longer to see if he had it under control.
“Matty, it’s not that simple,” he started to explain.
“Well I love you and I love Mommy and I want us all together,” Matty interrupted.
I walked into the room acting as if I hadn’t heard the entire conversation that had just taken place. “Look who’s awake!” I said cheerfully, hoping to change the topic of conversation. Matty clung tightly to Julian as tears streamed down his face. I sat at the edge of the bed trying to comfort him.
Dr. Fowler entered the room, causing a welcome distraction. He had a look of surprise seeing Julian up and about. “Weren’t you having the procedure today?” he asked.
“Yes, it’s done,” Julian said, using the same tone that he had with Dr. Young.
“You should be sleeping that anesthesia off,” he lectured.
Julian ignored him and took Matty’s test results from his hand to read them over; again, making me feel like I needed to apologize for his dismissing demeanor.
“Everything looks good to go,” Julian said, giving them back to Dr. Fowler.
Dr. Fowler explained that the transplant was scheduled to begin at 6 a.m. He advised that we would be allowed to stay overnight with Matty, once he was moved to the other room. He warned that if Matty started showing any signs of infection, he would be put into total isolation.
We spent the rest of the day and night with Matty. He was handling the meds well thanks to the anti-nausea medication. It was getting late, Matty had just fallen asleep. Julian looked as if he was ready to fall asleep as well. He checked Matty’s medication one last time before we left.
It felt a little strange having him spend the night without Matty there to act as a buffer, especially after our kiss the other night. I sensed that he felt the same way as well.
“You can just drop me off at your house and I will head over to James’,” he said as we reached my car.
“It’s late; you haven’t gotten any sleep after being under anesthesia and you’re in pain,” I said finally able to think logically and put the other night out of my mind. “Plus you’re not supposed to be driving for twenty-four hours,” I added.
“I will be-,” he tried getting the words out, but I wouldn’t allow it.
“Really Julian, we have to be at the hospital early tomorrow,” I said firmly. He didn’t respond, which indicated to me that he knew I was right.
We arrived back at my house and the cold December night air hit me in the face as I stepped out of the car. I immediately turned up the heat when I got inside. Julian had been very quiet, responding to emails on his phone. I was amazed that he was still coherent after the day that he had. I went into my room to change into my pajamas, while he was still typing away on his phone. I came back into the kitchen and noticed his painful reaction as he got up from the kitchen chair.
“Will you please just go sit down on the couch and relax,” I requested.
He obliged, silently walking over to the couch. I brought him over two Tylenols and a glass of water. To my surprise he didn’t put up a fight about taking them.
“You really overdid it today,” I said, sitting down next to him.
“It
was minor surgery,” he answered.
“Have you even checked the extraction site?” I asked.
“It’s fine,” he said in the same short tone that he had been using with everyone all day.
“Let me see,” I persisted.
“Kat, I’m fine.” He sounded annoyed.
“Julian – now!” I shouted, feeling more like I was talking to Matty.
He raised his eyebrows and shook his head. I stared back at him not giving in. He finally lowered the waistline on his pants to reveal the site on his hip. He covered it back up so quickly, I couldn’t see a thing.
“Julian, honestly let me see,” I almost pleaded.
He reluctantly revealed it to me again. I gently removed the bandage. It was red and swollen.
“It’s fine,” he insisted.
“No, it’s not fine,” I said sternly.
He rolled his eyes at me, not wanting to hear what I had to say.
I grabbed his arm and pulled him off the couch and into the bathroom. I cleaned it thoroughly with soap, water, and peroxide.
“You know, I’m quite capable of doing this myself,” he said sarcastically. This time it was me who was ignoring him. I put some antibiotic cream on it and slapped the bandage on just a little harder than usual.
“Geez, are you this rough with all your patients?” he asked with a boyish grin.
“Only the bad ones that won’t listen.” I was very matter-of-fact. He looked like a zombie; his skin was pale, his eyes were bloodshot and he could barely stand up. “Now go to bed,” I demanded.
“What?” he chuckled at my stern demeanor.
“You should have been resting all day,” I said.
He rolled his eyes again. “I’m not one of your patients.”
“Well if you’re going act like a child then I’m going to treat you like one.”
I pushed him in the direction of the guest room and turned down the covers. He shook his head. I sensed that he realized he wasn’t going to win this battle.
“Now, Dr. Kiron, can I get you anything else before you go to bed?” I joked.
He was smiling, looking like he was trying hard not to laugh. “Yeah, a new doctor.”
“Oh sorry, I’m the only one on duty tonight.” I gave him a sarcastic grin. “Sleep well, doctor.” He shook his head as I shut the door behind me.
I was super tired but at the same time wide awake. I decided to head out to the living room and watch some TV in hopes of falling asleep. As I walked past Matty’s room something compelled me to go in. I sat down on his bed and grabbed one of his stuffed animals and hugged it tightly. I laid down, breathing in his scent that was still on his pillow. There was nothing in the world that I wanted more than to be cuddling with him right now. I missed my baby boy so much. I felt a lump in my throat thinking about the long journey ahead. I tried remaining positive as I thought of what tomorrow would bring. I took comfort in knowing that Julian was here and Matty had the best doctor in the world caring for him. I closed my eyes and whispered “thank you” to the special angel that I knew was watching over him and would never leave his side – my dad.
Chapter 33
I sat in Matty’s room on the day of his transplant looking at the bag of blood hanging from his IV pole. It was hard to fathom that this was what his life had come to. This was what was going to keep him alive. He wasn’t eating much of anything. Even his usual sweet tooth was curtailed. I was warned that this would happen, but the sight of him turning down a brownie was as painful as watching him lying in the hospital bed.
It was now a waiting game. The first few weeks were the most critical. The intense regimen of chemo that he received prior to the transplant had crippled his immune system. Julian and I were the only visitors allowed. He was highly susceptible to infection. The transplanted bone marrow had to set up inside his body and start producing normal blood cells. I was taking it one day at a time. Every day he got through without any major complications was a victory.
My world now consisted of this hospital room. I hadn’t seen Charles and Claire or Tricia and James in weeks. I missed them so much and would call or text them each day with updates. I was even beginning to miss the daily routine of work.
We were now two-and-a-half weeks post-transplant. Matty had been showing flu-like symptoms, which was common for any patient receiving a transplant. He was weak and irritable, and nothing seemed to appease him. I was amazed by Julian’s diligence to stay by his side. He had totally put work on the back burner, letting his associates temporarily take over for him. I was grateful for this. I wouldn’t have been able to go through this alone.
Matty picked up his favorite book from the table beside him. “Can you read this to me?” he asked Julian with his gruff little voice now sounding very weak.
Julian sat down next to him with the book and began reading. Matty listened closely, taking extra time to look at the pictures. I watched and smiled, thinking he was finally showing an interest in something. Maybe this was a good sign. As I looked on I began to notice his eyes moving about strangely, then he let out a hoarse cry as his body began to shake uncontrollably. I couldn’t believe what I was witnessing—he was having a seizure. This was another side effect that I was told could possibly happen, although it was very rare. I felt paralyzed as I stood there watching it unfold. I couldn’t move – I was terrorized. Julian quickly turned him on his side to help keep his airway open. Snap out of it! I told myself. I was finally able to move myself over to his bed. The seizure lasted for about thirty seconds but it seemed like forever before he started to come out of it. Julian was comforting him while he got his bearings. He was trembling and crying as he hugged Julian tightly. I sat down on the bed next to him as he began to cry harder when he looked down and realized he had lost control of his bladder.
“Matty, it’s okay,” Julian reassured him.
“I’m scared, I want to go home.” The tears began to stream down his face.
“I know; soon, buddy,” Julian said as he hugged him tightly and kissed his head.
My heart was breaking. I didn’t know how much more I could take. I sat down on the other side of the bed. “Matty, everything is going to be okay, sweetie,” I said, rubbing his back.
Julian waited until Matty had calmed down a bit before getting up. He looked over Matty’s chart and slammed it on the table in annoyance before heading out of the room. I had no clue what was going on. A few seconds later I heard Dr. Fowler being paged.
I carefully changed Matty into clean clothes. His little body was so frail I was afraid I would hurt him just by dressing him. I offered him some water. He took a small sip as tears streamed down his face. I rubbed his back until he started to fall asleep. I covered him and watched him closely.
Julian returned with a look of total displeasure on his face. “What’s the matter?” I asked.
“I specifically told Dr. Fowler that I wanted Matty on anti-seizure medication as a precaution. Apparently it was never done,” he said angrily.
I wasn’t sure who he was more upset with, Dr. Fowler or himself for not double-checking his medications. Knowing Julian, it was more than likely the latter.
“Don’t blame yourself; you’ve been doing everything humanly possible for him,” I reassured him.
“If he had been on this before, this would have never happened,” he said, still upset.
“It’s over with now and he’s okay,” I said, trying to calm him down a bit. I could tell that he wasn’t going to let it go. He sat down in the chair alongside Matty, watching him sleep. He carefully observed every breath he took, almost as if afraid that he was going to seize again.
“When do you have to go back to Chicago?” I asked, trying to take his mind off of it.
“Next week for some meetings; just for a couple of days,” he said reluctantly.
A sense of alarm came over me. I was so afraid of dealing with this on my own. He must have sensed my apprehension.
“Call me if you need anyt
hing,” he said reassuringly. “I’ll have my phone on me at all times.”
Dr. Fowler entered the room along with Dr. Taylor, another doctor who was assisting with Matty’s treatment. Julian immediately stood up as if all the anger that had just diffused was resurfacing.
“Why was he not put on anti-seizure meds like I asked?” he demanded.
Dr. Taylor began to explain. “Dr. Kiron, being that there was such a slight chance of a seizure; I felt it would be best to not subject him to any more medications.”
I could see the rage in Julian’s eyes. I sat down quickly next to Matty and prepared myself for what was to come.
“You felt it would be best?” he asked, his voice getting louder. The last time someone had made a decision on what they thought was best was me - that didn’t go over so well either.
“Do I have to remind you, I’m overseeing his treatment and I said I wanted him to have it, so it doesn’t matter what you felt was best!” I could see that Dr. Taylor was beginning to feel uncomfortable.
“He only thought that –” Dr. Fowler tried to speak in Dr. Taylor’s defense, but Julian quickly stopped him.
“Well he thought wrong; my son had a seizure because my request was not followed.”
I remained quiet and cringed at the fury in his voice. This was a side of Julian that I wasn’t used to. This was the angriest that I had ever seen him. He always remained so calm and cool. Even when he was angry he hardly ever raised his voice, but today that side of him had vanished.
“The nurse will be in shortly with the medicine,” Dr. Fowler said.
Dr. Fowler and Dr. Taylor apologized. I gave them a nod of acceptance. Julian said nothing, not acknowledging them at all.
I watched as they both exited the room. Julian walked over to the window and looked outside.
“Why don’t you go back to my house and get some rest?” I said as I went over to him. “You’re beyond exhausted.”
He immediately shook his head. “This has nothing to do with me being tired,” he said. “One simple thing could have prevented this from happening today.”