Installment Sixteen

I think God must’ve had it out for our family.  As if all of the things going on weren’t bad enough, a week or so after the transplant was the beginning of one of the worst events of the year.  We were going to visit Taylor, and when we got there we weren’t allowed to see him.  Dr. Peterson wasn’t allowing us to see him until she came down to talk to our parents.  The only thing to be interpreted from that was that something was wrong.  That feeling I’d had the day of the transplant had been present ever since that day, and it was strong again.  I knew that we were going to be hit with bad news, but instead, we were slammed with it.  The words that came out of her mouth were seven of the most terrifying words I had ever heard:

“Taylor’s body is rejecting the bone marrow.”

“What?” Mom’s words were barely audible.  “I thought Zac was a match.”

“No one could be a perfect match unless it was a syngenic donation – unless he had a twin.  Zac was as close to perfect as we could get, and apparently…” She gestured for us all to sit, including me.  She started to speak again, more softly.  “The bone marrow isn’t engrafting; what is left of Taylor’s immune system is strong enough to fight, and unfortunately it’s fighting the wrong thing.  His T-Cells are attacking the new bone marrow, and if we don’t do something right now, it will destroy it.” She grew quieter, letting her next words out even more gently: “Taylor’s life is in jeopardy.”

“What can you do?” Dad asked quietly.  He and mom had their hands linked tightly together, both out of fear.  Who could blame them?  This was their son, my brother…

“He needs to be given immunosuppressive drugs immediately; it’ll reduce the response of his immune system enough to hopefully stop it from attacking the new bone marrow.”

“What will it do to him?” I asked quietly.  They all looked at me, no doubt wondering how I had known it would do anything at all to him.  She – the doctor – looked back at my parents.

“Taylor’s going to be very ill,” she said softly.  “The side affects from these drugs are severe in most cases, but the risk is a needed one.”

“Is he going to die?” My mother barely got the words out.

“Not directly from the drugs, no, but…” she was quiet a moment.  “Taylor’s very sick right now – his life is in serious danger, and if I don’t do something about it right now – “

“Do what you have to if it’s going to help him,” dad interrupted.

“I can’t allow you to see him,” she said softly, regretfully, “not tonight, or tomorrow even.”

“When?” Mom asked quietly.

“In a few days, but you need to continue to wear the gowns, the gloves, and the masks.  These medications are going to severely deplete his immune system, and that makes him even more susceptible to infections than he already is.  It is so very important for him not to get any infections…” She looked at us all, sorrow and pity evident in her eyes.  “I’m sorry to have to give you news like this, I really am, but you needed to know.  I’m going to put him on two medications; one is called cyclosporine and the other is called azathioprine, and I need to warn you that they both have serious side effects.  You need to know that Taylor is going to be very, very sick.  He’s going to be very weak – “

“Weaker than he already is?” I asked quietly, sadly.

“Much,” she said softly.  “He’s going to be very tired.  Side affects of both include nausea and vomiting…” I knew there were more serious side effects that she wasn’t telling us, but I assumed it was for good reason.

“Will he be okay?” Mom asked quietly.

Dr. Peterson’s answer just about crushed us.  “I really don’t know right now.”

I don’t know why, but I had this new feeling like… like he was hurting, more than emotionally.  I suddenly spoke again, my own voice making me jump.  “He’s in pain…” They all looked at me, a little shocked at my perception.

“Yes, some,” she answered.  I knew she was candy-coating it for us.  When a nurse came out of his room, we could hear his voice faintly.

“God it hurts…” he said “…please make it stop…”

The heartbreaking looks on my parents’ faces were almost unbearable.  Luckily, she was saved from being put on the spot when the nurse came up.  “Dr. Peterson?  I’m sorry to interrupt, but…” she looked towards Taylor’s room.  “He’s spiking a high fever,” she said in a hushed tone, “and he vomited twice.”

“I’ll be right in,” she said in the same hushed tone, and the nurse went back to his room, closing the door, but not before we heard Taylor’s strained voice once more.  “Please… I want my Mom…” Mom broke down crying, and the doctor apologized again before going into his room.  We were told to go on home, there was nothing we could do for him that the doctor couldn’t, and we all needed rest.

I couldn’t sleep that night; I really don’t think any of us did.  But I did do a lot of praying, but it didn’t seem that anyone was listening.  I know God works in mysterious ways; making my brother suffer needlessly was not mysterious, it was downright cruel, and I was beginning to question my faith.  I’ve always – well, we’ve always been taught to believe in God, to have faith in God, to do this and that for God; I’ve never even thought about questioning those things, or him, until this happened.  I never mentioned it to my mother; I figured me telling her that God was cruel and I was really pissed off at him for being so unfair would probably bother her, and her attention needed to be focused on Taylor.  I mean, her attention was already on Taylor, not that it was a problem – all of our attention was focused on him.  Ike was over a lot; he helped Zac out with the younger kids, and besides, when he brought May she brought Christopher and it usually kept Zoë busy having a little one around.  But that feeling I had?  The one that told me this was going to happen?  Well, it wouldn’t go away.  I – and the rest of us – had thought this would be the worst of it, and once he was over this hump it would all get better.  It was more than just a little hump; this was Mount Everest, and Taylor was slowly falling back down the slopes instead of trucking his way up.  He was too weak for that; he barely had the strength or energy to talk to any of us when we went to see him and were finally allowed to actually do so; it was a struggle just for him to breathe at times.

The first time anyone was allowed to see him again just mom and dad went; we all knew that they needed time alone with their son.  And when they both came home with eyes red rimmed and a little swollen, we knew they had both been crying considerably so that meant one of two things: they were happy and Taylor was doing better, or they were truly saddened, and Taylor looked and was probably doing horrible.  I think we all knew it was the latter, though it remained unspoken.  That night, after they visited them, mom was sitting out by herself on the porch swing.  She was in sweats with her amazingly gorgeous, long blonde hair pulled back into a bun.  She was sitting on the two person swing with her knees drawn up to her chest, her arms around her legs, and her chin rested on her knees.  It surprised me how young she looked sitting that way, and then I was surprised once more when I saw her face and how much she seemed to have aged in that passed few months.  She looked so worn and sad, like she had been dragged through some storm of Heaven, left somewhere between a rock and a hard place, and then dragged some more.  All of us had experienced that – at least our emotions had.

“Mommy?” I was fifteen, and I was calling her Mommy, and I noticed it wasn’t the first time since all of this had started.

“I didn’t know you were out here,” she said softly, looking at me momentarily and then looking off into the distance.  The sky was almost clear; the clouds were little puffs of white, like cotton, and spread out sparsely over the dark-blue velvet blanket the sky created.

“Are you ok?” I asked quietly.

“Baby, I’m not the one you need to worry about.” Her voice was quiet, and I had never heard my mother sound so resigned.  She sounded like she was losing her hope… My mom never lost hope in the face of hopeless situations, she never did…

“Mommy?” She looked at me again, and patted the spot next to her.  I went more than willingly, and sat beside her, and was so comforted when she slipped her arm around my shoulders, pulling me close to her.  I just rested against her for a little while, neither of us speaking, watching the night sky.  The stars went on twinkling, sparkling, unaware that one of their fellow earth-bound spirits was suffering so badly…  I had asked my Mom once where souls came from, and she told me they came from the stars – a gift from God – and that each star was a soul waiting to be born, or reborn.  I always did believe that.  I shivered, suddenly covered in goose bumps when I thought about the possibility of Taylor’s soul rejoining all those millions of others…

“I don’t have any answers for you,” she said quietly, almost sadly.  “I know I’ve always told you that there are reasons for everything that happens to us, but… I can’t find a reason in this.”

“Nobody can,” I said softly.  “Mom, was he doing bad?”

“Oh baby,” she said softly, the sound of tears making itself known in her voice.  “Luck isn’t on his side,” she said softly.  “And I don’t understand…”

“Mama?” I whispered.  “What happened at the hospital?” The swing was swaying gently, creating a calming effect that wasn’t calming.

“Oh Avie,” she cried quietly.  “My poor baby is so sick…” I felt her shake her head slightly, and I felt her tears drop onto my head.  “I don’t know why this is happening to us – to him, Avie…”

“Mom, what happened?”

“Every side effect – every damn side effect you could think of they’re just slamming him.  He can’t take this, baby…  How much can one person take?”

“I don’t know, mama,” I said softly.  “But Taylor will be ok; Taylor was always ok…”

I felt her kiss my head and hold me close.  “God, Avie… I hope you’re right.  Did you pray for Taylor tonight?”

“Yes,” I answered honestly.

“Good girl,” she whispered, gently stroking my hair.  “He needs every prayer he can get.” When she spoke next I knew she wasn’t speaking to me, her voice hushed.  “Please… send him a miracle…”

Isaac and Zac and Rachel went to see him next.  Obviously they didn’t all go together – he could only have two visitors at a time.  Ike went first, and came home the day he went much like mom and dad had the day they went.  And Zac and Rachel the same; she was still crying a little when they came home.  Jessica, naturally, went to see him next and the same result was brought back with her like I knew it would be.  He must have been doing really bad…  I knew it – because it’s the kind of luck I have (I apparently seem to have been in the same boat as Taylor in that department, except my life wasn’t hanging above me) – that when I went to see Taylor that something was going to go horribly bad.  I couldn’t go alone – I was under sixteen – so mom went with me.  In our gowns and gloves and masks we slowly entered his room.  I was completely shocked, not expecting to find what I did.  My poor brother…  His skin was disgustingly white, and his cheeks were bright, brilliant red with fever.  His forehead, where his bandana didn’t cover, was a little damp, maybe from his temperature being so high…  There was an oxygen tube under his nose and an I.V. in his arm now.  His breaths were shallow, and sounded a little laboured, like he was having a hard time breathing…  I found out shortly after that difficulty breathing was a side effect of one of his immunosuppressive meds.  It had been almost a week since I had been allowed to see my own brother.  He swallowed harshly, forcibly.

“Tay?” My voice came out a whisper, but it was enough for his tired, fading eyes to slowly slide open.  And I was suddenly at a loss for words; I didn’t know what to say to him, how to act, what to do…  “Oh God…” I sobbed quietly.  Mom put her arm around me, pulling me close enough that I could hear her heartbeat as I rested my head against her.  It occurred to me then that the rhythm of her heart and the rhythm of his heart monitor were slightly off.  No, Taylor’s was off…  It was faster, and didn’t sound like the normal bump-bump bump-bump bump-bump.  The rhythm of his heart was off, actually, more so than I had realized at first.  He shivered a little.

“Are you cold?” Mom asked quietly.

“A little,” he answered, his voice incredibly hoarse.  “Bad case… of the chills today,” he said, slowly, shivering again.  “But I can’t… have anymore blankets ‘cause… of the fever.”

“I know,” mom said comfortingly.  “You need to get that temperature down; they’re only trying to help.”

“I know,” he whispered.  We both moved forward, both of us taking his right hand.  He squeezed suddenly, almost hard.  “Sorry,” he whispered, drawing a few short, shallow breaths.  “Been doing that… all day.  Muscle spasms.”

“Were you ok today?  Were you sick?” She asked gently.  He closed his eyes for a few moments, and reopened them even more slowly than he had the first time.

“It was so bad…” he whispered.

“Were you able to eat anything?” She asked softly.

I watched his mouth contort into a small frown and tears begin to fill his eyes.  “No,” he whispered.  “I tried… but I puked all over.  I can’t… keep anything… down.”  That feeling hit me again, hard, as his hand involuntarily squeezed ours again, hard.  “They gave me this thing,” he said pointing to the IV.  We knew enough about IV’s by now to know what they were used for; he couldn’t keep anything down, so they had to nourish him somehow.  And I realized as he had lifted his hand to weakly point to the tube in his arm, his hand was trembling so bad…  Something horrible was happening to my brother, and I was witnessing it too now.

“Mommy…” he whispered.  It brought tears to my eyes. I knew he wasn’t ignoring me, he just needed his mother – he was like a little boy.

“What is it, baby?” She whispered back.

“I feel like I’m dying inside…” tears made paths from the corners of his eyes to his pillows.

“Oh Taylor…” she whispered, kissing his hand.

“Please don’t give up…” I whispered, and he opened his eyes, and looked at me, the tiny movement seeming to drain him of all his energy.

“I’m trying, Avie,” he whispered.  “But it’s so hard…”

It was a simple, horrible truth: he was doing bad.  And things only got worse that afternoon.  I never thought I would ever see what I did, and I pray to God I never see it again.  One of the side effects of one of the medications he was on was convulsions… It was the worst thing to see.  His eyes rolled up into the back of his head, his whole body went rigid, and his whole body started to shake.  Mom quickly ran out a called for someone to please help us, but all they could do was try to hold him still.  Someone kept their hands on either side of his face, pillows under his head, and someone held his arms down, having to kneel over his chest, and someone else held his legs down as best as was possible.  I cried the whole time, and mom cried.  And after an agonizing four or five minutes it finally began to taper off.  The short, violent jerking movements began to slow to slight twitching, until he was completely still, sweat in a glistening sheen over every visible part of his body.

“His blood-pressure’s sky-rocketed,” someone said.

“We need Dr. Peterson in here now,” someone else said, taking charge.

“His rhythm is way off,” the first person who spoke said – it was a female nurse with black hair.  His breath was coming out in short shallow gasps, and I was so scared.  And when Dr. Peterson rushed in, his lips had taken on a slightly blue tinge.

“This isn’t supposed to be happening,” she said, looking at him, checking him over, and scanning his chart.  “Turn his oxygen up,” she said.  “And god damn it, get his temperature down.” She turned to Taylor, mom and I frozen where we stood.  “Taylor,” she said softly.  “Come on now; open your eyes up for me.” He didn’t move, save for a slight creasing in his brow.  “I need someone to watch him,” she said.  “Someone needs to constantly be monitoring him.  Every god damn side effect for these damn meds…” she said shaking her head.  She looked at us apologetically.  “I’m so sorry, but… you’ll have to leave.”

“Is my son ok?” Mom asked quietly.  “Dr. Peterson, is my baby ok?”

“He’s as stable as we can get him right now,” she said softly.  “Please, go home and rest.  You can’t do anything more for him here.  You can come back and see him in the morning.”

“Please don’t let him die,” I said quietly beginning the doctor.

“Avery,” she said, knowing me now by name.  “We are doing everything we humanly can to make sure that doesn’t happen.” It was as close to a promise as I was going to get and I knew that.  I went over to him, mom with me, and leaned down, gently kissing his forehead; I gently traced his cheek with the backs of my fingers.

“I love you, Tay,” I whispered, leaning down and kissing his head one more time, and Mom did the same.  I was truly afraid - the chance seemed more real than ever that we could lose him.  It just about killed me inside to even think about it.  And Shanna had started to call regularly to check on him, and when I told her what had happened with the bone marrow transplant she had started to sob.  I assured her that he would be ok; he had to be ok.   Taylor wasn’t going to die.

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