Josh’s Story – Losing a Child to Leukemia

I realize the title of this post is not a pleasant one. It’s not something we like to think about. But, for many, it’s a reality. 20 years ago it was our reality.

This month marks the 20th anniversary of the home-going of our 17-year old son, Josh. I thought I would share this post with you in hopes to encourage someone who may be going through a similar situation.

God is ALWAYS good. God sees the big picture. We are so limited in our understanding of life. This I know, with all my heart, that God only allows things to happen that conform us to his image and that work for the ultimate good. Although this was extremely crushing to go through, I KNOW that God views all that happens to us in light of eternity. 

This post is much longer than usual, but I found it difficult to divide the story up into pieces. I pray God continues to use Josh’s story for His good purposes….

It was about 11:15 on a warm, sunny September morning when my telephone rang. It was Gene from the doctor’s office. He asked me if Rick was home, and I said no, he was at work. He told me he had some bad news and perhaps I should sit down. I told him I was sitting, and he proceeded to tell me that Josh’s test results had come back, and although he wasn’t positive, it appeared that Josh had leukemia. At that very moment, my life changed drastically, although I couldn’t comprehend how much just then. I was stunned. I don’t remember too much else that he said, except that I should get in touch with Rick and have him call Gene. He would schedule us with an oncologist that afternoon to confirm the diagnosis.

Rick, my husband, was a drywall contractor. My third oldest son, Nate, worked for him. I knew they were supposed to be at a house near to home today. I got in the car and drove there, feeling as if nothing was quite real. Nate was there by himself. Rick was wrapping up another job and was due to arrive soon. I told Nate, eighteen years old, that Josh, his younger brother by eighteen months, had leukemia they thought, and told him I needed to reach Dad. He asked me if I was okay and offered to call Dad on his cell phone for me. He did, told him the news, and heard him say, “yes, Mom seems to be okay.”  Rick was on his way home. Nate offered to stay on the job and keep the work going. I rode home. I remember sitting on the couch wondering how I could tell Josh. Should I tell Josh? What was leukemia anyway? I’d heard of it, but I couldn’t explain it – my impressions were vague. I called the church to notify them. I did okay until I said the word ‘leukemia’, and broke into tears, but was able to calm myself as I asked Jean to tell the pastors.

Josh called me. “Maw, come here.”  He was lying on his bed, with a very bad headache and he was extremely weak. He’d been to the doctor on Friday, and they suspected he had mono. The symptoms were very much the same.

Josh had been having headaches for a few months. He’d been to the doctor twice, and had been on antibiotics for a suspected sinus infection. The first round of antibiotic had no effect, so they tried a stronger one. Still no effect.  Just lately, he’d gotten short of breath when he expended energy. He’d even thrown up a couple of times. He had been helping some good friends roof their house that summer, and had to get off the roof to throw up. When he mowed grass, (he worked for a landscaping company) he’d have to rest often. The previous Friday, September 6^th, we had severe storms. Water began to seep into our finished basement. The boys and Rick were vacuuming it out, but the water had the upper hand and it was all they could do to keep up with it. Josh was down there helping, but he was very weak. He volunteered to go to Lowes for the third vacuum.

I was eight and a half months pregnant so I wasn’t much help in the basement. Josh took a little longer than expected to get the vacuum. He was moving slower than usual. He took it downstairs and started helping the group. A while later he came up and sat down in the recliner and said, “Maw, I feel so guilty. They need my help, but I’m all worn out. I just can’t do it anymore. My head is killing me and I’m so short of breath. I think I really need to go to the doctor again. This medicine just isn’t helping at all.”

I was pretty overwhelmed to say the least. Everything in the basement needed to be put up high. The water was coming in faster than three guys could vacuum it. I called the doctor and they said for him to come on in. Josh said, “Mom, you stay here. I’ll drive myself.” I agreed. Off he went, while I set about supervising the overwhelming job in the basement. The rain finally let up. There was lots of water to be vacuumed up, but it finally quit flowing in. What a job lay ahead of us! Josh came back home a couple of hours later. He was pretty upset; he had hit a border collie who had run out in front of his truck, and he couldn’t stop quick enough. A farmer had come out as the dog was in pain and howling. The farmer told him it was a stray – chased cars and was bound to be hit. He’d take care of it for Josh. Josh loved dogs. Collies were his favorite, and he felt really bad.

He said Gene had told him that he suspected a bad case of mono. He took a blood test, and the results would be back Monday morning. Josh must stay really quiet in bed most of the weekend, as his spleen was enlarged and Gene didn’t want to risk it rupturing. Josh didn’t object. He didn’t feel up to anything but heading off to bed. The dog too, was still heavy on his mind. Josh slept a lot that weekend. He didn’t have much of an appetite – he was a pretty sick boy……

He was calling me into his room. He said, “Maw, what do I have?”

I said, “Well, Gene’s not positive.”

“Maw, tell me.”

What could I say? I just said, “Well, he thinks you’ve got leukemia. We have to go to another doctor this afternoon to make sure.”

Rick arrived and we waited for the oncologist to call. We didn’t have to wait too long; we were able to go in at 1:30. Josh walked slowly into the office. He was really weak. The office was full of pale, mostly elderly people. The doctors drew blood, examined it under microscopes and confirmed that it was leukemia.

We were to take Josh to the University of Virginia Medical Center as soon as we could be ready to leave. We went home and gathered up a few of his things in a suitcase. Pastor Brodie, the assistant pastor at our church, was waiting for us at home. Josh sunk into the recliner and called Tucker, his two year old brother, up onto his lap. They were best buddies. Josh loved Tuck dearly and took him lots of places in his new truck. Josh had been working for a landscaper since March, and had saved his money to buy his much-wanted truck. It was his prized possession – a 1982 Ford F100 – garage kept, excellent condition.

Although his head was pounding, he held Tuck and told him he had to go to the hospital for a few days, and asked Tuck if he’d watch his truck for him. As Rick drove off to UVA, Tuck waved furiously and then climbed on the bumper of Josh’s truck, held on, and stood there “watching” it for him, as he would do often in the next weeks in Josh’s absence.

We found out that the headaches were caused by massive amounts of white blood cells in his bloodstream. The normal range is 10-12,000. Josh’s white blood count was over two hundred thousand, up considerably even since the previous Friday when blood was drawn. That night they administered a blood feresis –  taking his blood out of one arm, straining it of white cells and putting it back into the other arm. Josh was so sick he just didn’t care much, although he always hated needles, and the ones they used for this procedure were large. They had to repeat this process the following night also to get those white cells down.

The headaches were better. Now began some of the most trying and mind-blowing times in my life. We had long meetings with doctors; they being familiar with medical terms and procedures explaining to us the risks, the tests, the prognosis, the possible complications. The fact that Josh would probably never be able to have children due to high doses of chemotherapy and later radiation was a hard pill for me to swallow. Josh loved little kids. Tuck was the delight of his life. As I look back, the things that scared me so much were small in comparison to the fact that his very life was at stake, but I hadn’t comprehended that yet. Josh begged us to sign for them to put in a Heinlich catheter, so they could administer medicines without needles. But a central line into your bloodstream so close to your heart seemed so invasive to us. We assented. It was the first of many signatures which so often felt like I was signing my son’s life away.

It was suggested we switch Josh to pediatrics. He was seventeen, and borderline between child and adult age. We made the decision to do so, and were so glad we did. We were assigned a social worker, as were all patients. That really made us apprehensive at first. After all, we were home educators and fourteen years earlier had had to defend our stand in court. Social worker were two words we didn’t want to hear. But upon meeting her, we found she was hand-picked by God. Her sister had seven kids and home educated them. Her sister later wrote us a letter thanking us for Josh’s influence on her sister’s life, and saying that God had hand-picked us to help reach Teresa. She was Catholic and her sister said that God kept putting Christian witnesses in her path.

We soon found out that there are hundreds of kinds of leukemia. Josh had AML, a very aggressive, fast moving blood cancer. Then we learned that there are various types of AML. Of course we always hoped his would be easy to cure. It was number seven on a scale of one to ten – ten being the worst.

We underwent numerous briefings by his main doctor, who we liked very much. It was mind-boggling. They had to tell you all the possible complications and we had to sign that we understood that any of these might eventually happen. All the time we hung on to the positive things. He was first given a seventy percent chance of survival. We hung on. We listened. We asked questions. We asked more questions. We just knew it would be okay. Josh was involved with all the decisions. I felt that was only right. He never wanted anything held back from him, although he didn’t care to hear all the what-ifs that we had to hear. He said he’d deal with things as they happened. He told his dad the first night when he asked Josh if he was scared, “The word ‘scared’ is not in my vocabulary.”  His faith in God was immovable. His focus was on others.

Josh’s treatment plan was a week-long course of strong chemotherapy, followed by a five-day chemo intended to put him into remission. Then, as soon as his white blood count would surface again and they were sure he was in remission, a bone marrow transplant would be scheduled. Josh’s leukemia was rare and aggressive – a one in one one-hundred- thousand chance of getting that type of AML. The treatment was also aggressive. The briefings about chemo and its complications, as well as the bone marrow transplant…overwhelming is not a strong enough word to describe them.

The human brain- not trained in medicine- was on overload to try to absorb all that was scheduled to take place. Chemo was begun immediately. Josh was very nauseous. They tried for several days to combat nausea. We found he was allergic to Phenegrin and had an allergic reaction, a shaking, squirming feeling in his skin, much worse than the nausea itself. Finally they tried ATIVAN. It worked best for him. He always had nausea to a degree, but that was what controlled it best of all. It made him sleepy, but he said he’d rather sleep than feel sick. It did lower his heart rate significantly, and scared the doctors several times, so they had to monitor him carefully. We learned that chemo takes a while to work, and blood counts continue to plummet after the treatment is over. His counts would have to come up some before he could come home.

At first, my days were spent with OB visits (they monitored this pregnancy carefully, considering the extra stress) at 7 am, a fifty-minute ride home, packing up to go to UVA, another hour and a half drive, staying until 10 or 11 at night, and back home to grab a bite of supper and go to bed.

Kelley was born in between Josh’s first and second rounds of chemo, while he was home, thankfully. I came home the next day, and the following week Josh had to go up for round number two. This one was five days long, and as the hospital was one and a half hours away, I stayed home and talked long hours with Josh on the phone. Rick went up to be with him each day.

By the third round of chemo, I just took Kelley with me each day and often we spent the night up there in Josh’s room. There were several weeks that Josh had complications and couldn’t come home. He loved it when I would spend the nights with him. He had trouble sleeping during the nights, so he appreciated the company. He did have several periods at home, always with a packed suitcase, ready at a moment’s notice to head back to UVA should he spike a fever. During home times, we still had two days a week that we’d go up to the clinic for the day for blood and platelet tests, etc.

The goal was to get Josh into remission and then give him a bone marrow transplant. Matt, thirteen, was a perfect match to Josh. At one point, the local newspaper came to interview Josh. Josh gave a clear testimony and told them he was in a win-win situation. Either he’d be healed here on earth, or in heaven. Josh struggled with not having energy to do things he wanted to do, but his spirit was strong. He believed what I’d told him from the time he was little, that God made Him in a special way for a special purpose.

He got a fever after the reporter left and had to be rushed to UVA again. That night he told me, “Maw, I really think God held that fever back ‘til I finished that interview.”

God did use the interview. The paper actually printed his clear gospel message and Josh got a lot of response. An eighty year old man wrote to him, who said he’d never written a letter in his life, but told him he was touched by his testimony.

Josh never achieved a full remission. We came within one day of the beginning of transplant when leukemia showed up again. We even tried an experimental chemo, but nothing worked. I remember the day the doctor came in to tell Josh that the experimental chemotherapy hadn’t worked, and there was nothing left to try.

Josh looked at him and said, “Dr. DeAlercon, it must be really hard for you to have to give people such bad news.” The doctor’s eyes teared up and he was very affected by Josh, he told us later.

Josh came home, where he wanted to be, still hoping to regain enough strength to go through with the transplant, even if he wasn’t in remission. He hoped to gain a little more time to live, but strength didn’t return, and he got weaker.

He was always my right-hand man. Rick had apprenticed the other boys in drywall, but Josh had been my helper. We had done all my many errands together. He helped me shop for good buys, keeping in his head what was a better deal at which store. He was my good friend. I knew him so well and he knew me. He had my heart, and I had his.

The night before he died, I remember he asked Nate, his brother, to help him to his swollen feet. Nate asked why, and he said, “I need to go help Mom. She needs me.” That was his heart. He was my helper.

He died at home where he wanted to be, just after Rick had finished reading John 14 to him.

During the time he was sick, we heard from people in every state and eighteen foreign countries who were praying for him. There were 24-hour prayer chains going for Josh. I have no doubt that God could have healed him, as people were praying, but God had other plans for Josh.

Shortly after he died, I felt that if Josh could have talked to me, he would have said, “Maw, it’s okay. I understand now, and I’ll explain it to you when you get here.”

I asked God to show me a little part of why He chose to take Josh home, and God has, in His mercy, poured out myriads of reasons. I have a real peace that I did my best with Josh, he did his best for his Lord, and God has received much glory.

We counted eighteen people who had asked Jesus in their heart during the time Josh was sick and immediately following. At his memorial service, a friend of our family, just a few years older than Josh, was there and God convicted her as others shared testimonies about Josh. She said God asked her, “What would others say about you if you were to die right now?” She was involved in drinking, smoking, bad music, etc., and God used that to turn her around and get her and her husband excited about serving Him.

We heard testimonies of husbands and wives who started praying with each other for the first time, family devotions starting up and becoming regular, as they prayed faithfully for Josh. One of Josh’s best friends testified that Josh’s testimony through his time of illness turned his life around. He was started down the wrong path, but God used the whole experience to cause him to dedicate his life over again, and now he is serving God as a pastor.

For many years after Josh’s death, we were been involved in a benefit concert to help another child with leukemia. This gave us the opportunity to minister to the family in ways that others can’t who haven’t been through it and know the roller coaster ride of emotion you go through. Every year at the concert, an invitation is given and many people have been saved. Tuck, Josh’s little buddy, was saved at one of the benefit concerts; little Kasey, our youngest, who never got to meet Josh, was saved at another.

Gene, the nurse practitioner who diagnosed Josh (the first child he’d ever diagnosed with cancer), attended the service and also told us it changed him for life and helped him to be able to better counsel his patients who lose a child.

We’ve received letters from hundreds of parents who prayed for Josh, telling how the experience affected their family for eternity. Every few months, God blesses me with another testimony we hadn’t known about. God is so good. I remember the verse I was meditating on at the time Josh got sick – Philippians 4:7, about the peace of God.

I was feeling a bit overwhelmed with all my responsibilities as mom and wife, and was earnestly praying for peace. One day on my way to Charlottesville, after having left my other kids at home, I remember crying out to God and telling Him this wasn’t what I meant when I was praying for peace. I was praying for circumstantial peace, but God was answering my prayer for true peace. I didn’t understand it then, but I do now. I do have real peace. I did my job with Josh. I have no regrets. He did his job for God, and God in His sovereignty has used it and blessed and impacted multitudes of lives, and I only know a small part of how He used the whole thing to glorify Himself and bring others into His kingdom and gain victory in their pilgrimages.

It may be that some of you reading this will have to release a child to heaven.

You expect to lose your parents, but not your child. Should it happen, God’s grace must be appropriated. He won’t force it on you, but it’s there for the asking. It’s not a judgment on you; on the contrary, God wants to use it mightily, and if you’ll cooperate with Him, He’ll do just that. There’s a song that addresses this so well:

“God is too wise to be mistaken.

God is too good to be unkind.

So when you don’t understand,

When you don’t see His plan,

When you can’t trace His hand,

Trust His heart.”

It was a consuming desire of mine that Josh’s suffering not be wasted. God doesn’t make mistakes. I feel God chose to use Josh to accomplish much for eternity, and that’s a privilege. Our children aren’t really our own. They’re His.

Heaven has taken on a whole new dimension for me. I used to think, “sure, someday!”

But now I view it with anticipation. I can’t wait to get to heaven and see the finished side of God’s tapestry.

We’ll find out how other people down through the ages influenced us and how we influenced others, and how things we couldn’t make sense of down here on earth were weaved into a masterpiece in heaven!

It’s exciting! And heaven lasts forever! Our time on earth is so brief. In heaven we’ll enjoy eternity, together, and that’s forever!

These things I know:

God loves us. Heaven is forever. Josh is not dead. He is very much alive in heaven.

When I get to heaven one day, Josh is going to be so excited to show me all around. (He always loved to the first one in the family to do something and then share it with others)

God used this situation to make our whole family better people, living life with eternity in view

This experience caused us all to want to use the limited time we have on earth to accomplish God’s purposes for us, not just fill up space till it’s time to go home

We are more sensitive now to others who are experiencing tough medical situations.

We saw people get saved through seeing Josh weather his storm.

God never wastes suffering. There are mighty purposes wrapped up around it.

God never forsakes us. He supplies GRACE WHEN WE NEED IT. When we are too weak to go on, God wraps his arms around us and carries us through.

Satan wants us to respond to life’s hard circumstances by getting bitter.  God wants to use them to make us better.

God, please help me never to forget these lessons. I want to be better to be used of you. Bitterness is NEVER worth it. Help us to rest in knowing you. Thank you that you are weaving a magnificent tapestry of our lives in order to bring glory to yourself. Thanks for letting us being a part of your purposes for eternity. Help us to live the rest of our days on earth in light of eternity. 

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Marilyn

Marilyn is wife to Rick, Mom to 14 children, Nana to 22 grandchildren (and counting!) and homeschooler for 37 years. She and her husband own Character Concepts which they started for the purpose of helping others raise children with a strong, godly character and Biblical worldview.They have developed character curriculumfrom preschool through high school, based on what they found worked whenteaching their own 14 children over the years. Her passion is to help young moms raise kids of character and enjoy the journey!

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