JONATHAN’S JOURNEY

Posted on July 16, 2013

Our son, Jonathan O’Malley, was diagnosed with Acute Myeloid Leukemia on August 25, 2008. This is our story…

It was the first day of school, and I scrambled to get all of the kids and their new supplies to school.  Lauren was starting 8^th grade, Jacob 3^rd grade, and Heather was so happy to be a Senior finally.  Our youngest, Megan, was only 3 yrs old.  Jonathan, who was being homeschooled at the time, was home in bed and had been sick for a few days with a terrible sore throat.   Kevin had taken Jonathan to the family doctor a few days before, and also to the Emergency Room just the night before, but nothing seemed to be helping.  The doctor in the ER suggested taking him to an Ear, Nose, and Throat doctor for a possible abscess.  So later that day once kids were at school, Kevin took Jonathan to Dr. O’Mara in Beaumont.  After puzzling over the look of Jonathan’s throat, Dr. O’Mara decided to do blood work and have Jonathan come back in a few days when the results were in. 

Within a few hours, Dr. O’Mara called me with the results that would change our lives forever.  I will never forget the exact moment or place I was when I received the call.  I was sitting at the red light in front of the tire store on Hwy 96 listening to my girls chatter away about the first day of school when my phone rang.  It was Dr. O’Mara.  I barely heard the words ‘sorry to tell you this….Jonathan has Leukemia.’  I was in shock and heard only bits and pieces after that.  ‘Get to the hospital’ he was saying.  I was crying which scared my girls and wondering, “how am I going to tell Jonathan and Kevin?”  I really wondered how this could be happening.  Kevin had already lost a wife years before to the terrible disease Lupus, and now I was going to have to walk in and tell him that now his son had an even more devastating disease??? 

I walked in the house and as I passed Jonathan’s room, he was laying on his bed like any typical teenager playing a video game – without a care in the world.  I rushed to Kevin in our room and fell apart.  How could this be happening?   Jonathan was a very healthy athletic boy.  He was 5’11” and weighed 160 – all muscle.  He had been baptized just recently at church and had really begun to mature and grow in his faith.  He was beginning his Junior year of high school and hoping to even finish a little early with extra work.   He was starting to really learn about life on his own and figuring out who God wanted him to be.  Now here we were in the worst position as parents and living a nightmare.

We waited for the initial shock to wear off and after collecting our thoughts and emotions, we walked into Jonathan’s room and told him something was wrong with his blood results and that we needed to go to the hospital to get some more tests done.  I barely remember the drive to the hospital that afternoon.  Once in the waiting area, we finally told Jonathan that it was possible that he had cancer.  He simply patted us on the backs and said, “It will be okay.  God will take care of me.” 

Thus began the journey for Jonathan.  He was diagnosed that day, August 25, 2008, with Acute Myeloid Leukemia.  After confirming blood counts at Baptist hospital in Beaumont, Jonathan was taken by ambulance that evening to Texas Children’s Hospital in Houston where we were ushered from doctor to doctor while Jonathan was admitted straight to the ICU.  The Leukemia cells were in 96% of his blood, and he had hemorrhaging in his left eye and was in danger of a stroke at any minute.  It was also determined after doing a spinal tap, that the Leukemia was also in Jonathan’s spinal fluid which surrounds the brain as well.  He underwent immediate chemotherapy through IV and administered directly to the spine through a spinal tap.  All of this happened as we watched helplessly and signed the endless consent forms.  We prayed together as a family along with our ICU nurse around Jonathan’s bed that night knowing that our Almighty God was ever present and in control. 

Jonathan spent over 240 days in the hospital total during nine months.   He went through five intensive rounds of chemotherapy and too many spinal taps to count, with complications from infections and fungus on his lungs.   He required massive amounts of blood, plasma, and platelet transfusions in order to survive.    He went to ICU three times during his stay and even stopped breathing and was coded one night as I watched my son lay lifeless with nurses, doctors, and equipment all around.  All Jonathan had to say when he came to and found out that he had stopped breathing was, “did I look cool?” with that big endearing smile that he has.   

Our other children were being taken care of by friends in order to allow them to stay in school since we would have to be 100 miles away with Jonathan at the hospital.  Kevin and I came to know the families as our neighbors on the cancer floor.  We cried with them, celebrated with them, talked with them, and praised God with them for the simplest things that others might take for granted.  Kevin made the weekly drive home to spend every weekend with the kids, teach Bible Class, and to preach on Sunday morning and Sunday night.  He often brought the other kids to spend a few weeks at a time in Houston so they could see their brother.   Megan lived with us at the hospital and could be found in any given patient’s room playing dolls, watching movies, or helping to push an IV pole of a kid her age as they headed towards the playroom.  It was hard on all of us, but our children showed such love, understanding, and strength for their brother. 

Through it all, Jonathan remained confident of his faith.  One night in the hospital, I asked him, “Jonathan, do you ever wonder ‘why me’?”  He looked at me as though I had asked him the dumbest question in the world and responded, “no, Mom, why NOT me?  If it wasn’t me, it would be another little kid that had to go through this.”   I was firmly, but happily, put in my place by my wise son.  Over the next several months, Jonathan’s faith was tested time and time again as he saw other kids that he had come to know and love as brothers and sisters, pass away from the same disease.  Cancer knew no boundaries… they were 12 yrs, 9 yrs, 16 yrs, 2 yrs… and so on. 

Jonathan finally got to return home in May 2009 after completing treatment and reaching remission.  He enjoyed a few months at home and was just beginning to feel a little normal and get his strength back when he became sick with a sore throat.  Upon going to the local doctor for a blood checkup, we found out that Jonathan’s blood looked suspicious again.  So off to Texas Children’s we went for further tests, and on August 20, 2009, Jonathan had officially relapsed.  He would now need a bone marrow transplant to save his life. 

Our entire family was together this time as we had already decided to not be separated again.  I went back to homeschooling the kids so that they would all be with us through Jonathan’s battles.  God gave us all the backbone that we needed to step up and accept what was happening in our lives and face it head-on together as a unit – as a family.  We all moved into an apartment in the Houston area provided by an organization while Kevin and the kids continued to commute back and forth to home every weekend.

So Jonathan once again began more intensive rounds of chemotherapy, and the search for a bone marrow donor began.  Jonathan was adopted at birth; therefore, none of our family was a match.  A search was done for months of the National Bone Marrow Donor Registry and still no match, but time began running out and we were feeling helpless and desperate to find a donor. We turned to the “Be The Match” program and kept in close touch with Gulf Coast Regional Blood Center to promote bone marrow donor awareness, especially with the hopes of finding Jonathan a match before it was too late.  KHOU in Houston even did a story on Jonathan’s search for a bone marrow donor, and the “Be The Match” Program was featured as well to help educate potential donors of the simple sign up procedure that could possibly save someone’s life one day.

We had heard of another kind of transplant using a single cord blood from newborn babies.  The cords are generally thrown away, but over the years, mothers have allowed the cords to be stored in a public cord blood bank for the cells to be used for others in years to come.  But Jonathan was too big for a single cord blood and would need more cells than it could provide.  In talking with others and seeking out hope for our son’s life, we discovered that DOUBLE cord blood transplants were being performed at MD Anderson Cancer Center.  We met with doctors there in December 2010, and Jonathan entered MDA on January 27, 2010 – one day after his 18^th birthday to prepare for transplant.  He received his chance at life again on February 5, 2010.  We call this his “third birthday” for his first was as a newborn, and his second was his acceptance of Jesus Christ.

Jonathan was in great condition on transplant day even after receiving five days of intense chemotherapy and spinal taps.  He had the usual nausea and mouth sores, but nothing that was unexpected, and he was finally discharged on March 8th.  Over the next few months, the complications began, and he was admitted to the hospital for various problems: 

–    Arachnoiditis (inflammation of the nerve fibers in your spine) due to so many lumbar punctures with chemo

–    BK Virus – a virus that causes intense and painful burning to urinate as well as passing huge blood clots.  Jonathan could be heard even out in the hallways screaming “please God, take it away!” he was in so much pain. 

–    GVHD of the skin which creates an itchy rash all over your body that is hard to control (graft versus host disease – the new cells in your body actually see your own body as the enemy and attack it)

–    GVHD of the GI tract; Jonathan developed open sores down his esophagus, through all of his intestines, and throughout his rectum.  The lining of his stomach was literally coming out and he had bout after bout of diarrhea.  He began a procedure called photopheresis that was three times a week for four hours at a time.  At one time, he had to be sent to ICU for GI bleeding which to this day, we do not know the cause.

–    Pneumonia of both lungs and GVHD of the lungs

–    HHV6 (herpes virus)

–    CMV (cytomegalovirus)

The list could go on and on with all of the things that our amazingly strong son endured.  There were some days that he would get discharged only to have a new problem occur and he would be rushed back by ambulance by that night.

In October 2010, Jonathan’s body had taken a total beating from the months of complications.  He had two central lines in his chest, he was battered and bruised from endless procedures, and he now only weighed 120 pounds on his tall frame.  He began to complain of sinus pain and headaches which were treated with numerous antibiotics, but to no avail.  The pain intensified until Jonathan was writhing in pain and telling us that he knew something more was wrong.  Visit after visit, the doctor ran tests and could not find the problem other than a general sinus infection that was especially bad because of his constantly low immune system.  Then Jonathan noticed that his teeth felt loose on the upper left side of his mouth.  We were sent straight from the pediatric clinic to the dental clinic.  The dentist took one look and said “it is fungus.”  If you have cancer or a loved one with cancer, hearing those three words will send a chill up your spine.  Fungus is highly aggressive and once it has grown in the body of an immuno-suppressed person, they can lose their life in less than 24 hours because of its rapid growth and destruction. 

Jonathan was sent for a CT scan and then to Ear, Nose and Throat to confirm the fungus.  Within 15 minutes of the CT, the doctors were evaluating Jonathan for surgery to remove fungus that was in his sinuses and had spread to his maxillary bone and the palate of his mouth.  Within two hours, Jonathan was being operated on.  Six hours later, he was finally out of surgery.  But now, Jonathan was missing over half of the bone that holds the upper teeth (maxillary) as well as over half of the palate of his mouth.  Nothing prepared us for the way Jonathan looked that night after surgery.  His face was swollen beyond recognition, and parts of our boy were missing.  A device called an obturator had been placed in his mouth to give him a palate to be able to swallow and to plug the hole leading to his sinuses.  But as with everything else, Jonathan recovered amazingly well.  After weeks of intense antifungal IV medications in the hospital and outpatient, Jonathan was clear of fungus in his sinuses.  At that time, we thought that the worst was over and that Jonathan would surely not have to endure anything worse.  Well, God had different plans and many more lessons for us to learn.

Just five days after getting out of the hospital from the fungus, Jonathan awoke one morning with a scream.  Kevin and I rushed to him, and he was clutching his chest over his heart and gasping.  We called 911, and he was taken to the closest hospital to be stabilized before being moved to MDA.  At first appearance, nothing appeared out of the ordinary.  After a few doses of pain meds and some heart tests were ran and declared clear, he was transferred to MDA for further evaluation. 

After two years of being by Jonathan’s side during this battle, we knew that if he said something was wrong in his body, then something was indeed wrong and would show its ugly head any minute.  After his bout with fungus and telling us something wasn’t right and nothing showing up on tests week after week, we knew that Jonathan knew his body well and we paid attention.  A cardiologist saw him in the ER that night and declared everything normal, but since he had a slight fever, he was admitted to be watched.  Over and over he would have these episodes of pain in his chest where he would just scream and clutch, but nothing could be found.  After two days of these episodes, Jonathan began a new symptom.  When he would have the clutching pain, he would gasp for air in short gulps, quit taking breaths, and then go completely limp with his eyes wide open staring into nowhere and you could not get him to snap out of it.  About 30 seconds would pass, and he would suddenly take a deep breath and it would start all over again.  That second night, Jonathan was in such agony that he begged his nurse to gather everyone she could find to come into his room and pray with him.  She left out and brought back four other nurses.  We all held hands and knelt around Jonathan’s bed as he cried in anguish and begged our Heavenly Father to take the pain away.  The next morning, the episode lasted too long and a code was called because his oxygen level was decreasing at alarming speed.   Teams of nurses and doctors rushed in to revive him.  For me, this was the second time I had to witness a code being called on my son to save his life. 

Finally, the tests showed the problem.  Jonathan had pericarditis, an inflammation of the pericardium in your heart which is extremely painful.  But the tests also showed that Jonathan had a massive amount of fluid behind his heart.  The first tests done on him only showed frontal and the fluid could not be seen.  He was immediately taken into surgery to insert a drain from his heart to empty the fluid, and was then placed in ICU.  The procedure went well, and two liters of fluid were removed from his heart.  We were relieved that this had resolved, but we still had no idea what was causing all of these problems.  After reviewing all of his symptoms, the data, and doing research, it was determined that Jonathan most likely had the coxsackie virus which is otherwise known as the “common cold”.  Because of his low immune system, the virus got into his body and it knew no boundaries and was free to roam and destroy as it pleased. 

The drain in Jonathan’s heart was left in to continue to let the fluid drain until his body quit producing the fluid that was accumulating.   He began to feel better, ate something, and even watched some TV with me.  But by the next morning, it became apparent that Jonathan was not improving, and then the episodes began again, but seemed worse.  At 6 a.m., I made the worst phone call I’ve ever made to Kevin, who was at the apartment 30 minutes away with the kids.  I had to call and tell him that our son was for the first time ever, not strong enough to breathe on his own and was being placed on the ventilator.  As Kevin was on his way to the hospital, I sat alone in the ICU waiting room feeling as helpless and alone as I had ever felt in my life as I waited for what seemed like an eternity.  I prayed harder than I had ever prayed before that morning, begging God to please let my baby boy live.  When Kevin arrived, we both wept in each other’s arms and prayed before drying the tears, standing tall, and bracing ourselves to see the machines that would be breathing for Jonathan.  We walked in, and Jonathan was lying there peacefully.  He was finally not struggling for air or crying out in pain.  It hurt us to see him on all of those machines, but we realized that God knew that his body needed rest.  Kevin and I spent the next three weeks 24 hours a day/7 days a week with Jonathan in that tiny ICU room sleeping a few minutes at a time while my Mom came from Mississippi and stayed with the kids.  She had even packed clothes for “just in case” (funeral clothes) because we had no idea what was going to happen. 

Within a couple of days, he improved and was slowly taken off of the ventilator.  We were overjoyed that he had come off of it so quickly and was having no problems breathing by himself.  But as the hours went by, we watched Jonathan decline in his mental status.  He no longer recognized his doctors, his nurses, and sometimes not even us, his parents.  He was afraid of the color blue, and afraid to be left alone for even a minute.  The neurologist determined after seeing scans, that Jonathan now had viral encephalitis – swelling in the brain.  The virus had now invaded his brain and was triggering all sorts of delusions in his mind and altering his usual demeanor. 

Jonathan again took a turn for the worse, and more scans revealed that Jonathan now had fluid buildup on first one lung, and then the other, and drains were inserted into both lungs where a total of 3 more liters of fluid was removed from his body.  He experienced another episode whereby they determined that his air was being blocked by something and he kept losing consciousness.  The decision was made to place him on a ventilator yet again.  He looked me straight in the eye and begged, “Mom, please don’t let them do it”.  But we knew it was what was best for him, and we gave our consent.   He spent almost a week on the ventilator, and during that time, he woke up several times and fought the machines and would have to be sedated more.  Finally, he accepted it, and would write notes to us while on the ventilator.  We didn’t even know that was really possible! 

Watching the other families in the ICU day in and day out was heartbreaking.  One late evening, we were awakened by lots of activity just outside the glass doors of Jonathan’s ICU room.  With the constant care Jonathan was receiving, the curtain that covered Jonathan’s doors were often left open so that he could be observed constantly.  We saw a teenage boy around Jonathan’s age being wheeled into the room next door, and by the sounds and equipment going in, we knew that he was being placed on a ventilator.  His family was sobbing as they went in and out of the room, and we felt their pain down to our bones.  The sadness left us unable to sleep, and we spent the night sitting by our son praying with thoughts of his childhood, his smile, his silly sense of humor, his hugs, all running through our minds.  We were begging God to heal him, knowing that we were no more deserving than the family in the room next to us. 

A day later, we became acutely aware of increasing activity in the teenager’s room.  We prayed for him and his family hoping that the activity was not every parent’s worst nightmare.  After awhile, things quieted down.  Then we saw the priest entering his room with his parents and we knew that he was nearing the end of his life.  The next few hours were devastating as we watched his parents, aunts, uncles, brothers, sisters go into his room to say their last goodbyes.  We listened to the wails of his mother and father as they cried out in anguish knowing that we could be next.  Our hearts were heavy, and we engrossed ourselves in prayer for them.

The next morning, their precious son lost his earthly battle.  A few hours later, Jonathan awoke from a nap and began writing questions to me and his Dad about his health, asking when the ventilator might be removed, and if he was going to be able to breathe again.  He remembered being totally confused and told us a few things that were racing through his mind during his confusion.     He remembered that a boy about his age had been in the room next to him and he began asking us where he was and if he had gone back to the regular floor.  We wanted to run at that moment, change the subject, do anything to avoid this question, but one thing we promised Jonathan from the beginning of his fight with cancer was to always be honest with him no matter how much it might hurt.  I gently told him, “He lost his fight this morning, son.” Tears formed in Jonathan’s eyes and as they rolled down his cheeks, he wrote, “It should have been me.”   Every parental instinct for our child’s protection and survival rose into our throats at that moment as we told him not to say such a thing.  We thought maybe he was saying he wanted to give up because he didn’t think that he was getting better. Then he shook his head and wrote, “I know where I’m going… maybe he didn’t.”  We sat dumbfounded with tears springing to our eyes as we realized that our boy was willing to trade places with a teen he never met just because he thought maybe he might not have been a Christian.  We assured him that his parents had prayed constantly around his bed and that he came from a religious family. That eased his mind and he was able to go back to resting.  Our son left us speechless with his faith, wisdom, and loving heart. 

After a month in the hospital and now weighing only 106 pounds, Jonathan was able to finally be discharged from the hospital with his faith and smile completely intact.  Our entire family was exhausted, but we didn’t care.  God had allowed us to keep Jonathan a little longer, and we would take whatever He would give us.  Jonathan was even readmitted the next day due to stomach pains.  He had developed severe constipation because of all of the meds he had been put on in the ICU.  After a week of multiple stool softeners and medicines that should have caused him to have a bowel movement, Jonathan was still in great pain.  We were allowed to come home with meds and some different things to try.  Jonathan had to endure his Mom and Dad giving him five different enemas before he finally got relief.  His weightless bones looked as though they would snap in half each time Kevin and I would have to administer the enema and help him through the pain and discomfort of it. 

I wish I could say that we went home and lived happily ever after with no more complications, but there were many more battles ahead of Jonathan even after all he had already been through.  He endured multiple hospital stays in 2011 and 2012 for persistent staph infections, chronic pericarditis, pneumonia, viral encephalitis, and multiple unknown infections or viruses.  By the end of 2011, we moved to Houston permanently. 

With the stress of the last 4 ½ years, we are emotionally, physically, and financially drained, but we can still hold onto our son everyday, which is priceless.  Due to all of the medications and steroids required over time to heal several of Jonathan’s issues (especially the chronic pericarditis and GVHD after transplant), Jonathan has had to have more surgeries because of the damage that was done to his bones by the medicines.  In March 2013, he had his right hip replaced and three weeks later, he had his left hip replaced.  Complications from those resulted in a third surgery to relieve a blood hematoma and cleaning of the wounds.   He received countless amounts of blood transfusions which resulted in an overload of iron in his system.  To correct this, Jonathan goes every 6-8 weeks to Texas Children’s to have blood taken from him to force his system to make new blood without so much iron in it.  He has been doing this for over a year now and probably has another year to go, but it is a small price to pay considering all of the blood he was given to save his life.  His left knee is damaged and beyond repair according to the latest surgeon we saw.  He will now need a total knee replacement.  His right ankle, right leg, and right foot are damaged also.  We will be seeing a specialist in August to find out what he will need done to repair it as well. 

Jonathan continues to see his Dental Oncologist at MD Anderson for the obturator in his mouth and will do so probably for the rest of his life.  He can opt to have a reconstructive surgery in the future if he would like, but it is a yearlong process.  He also sees a specialist in Opthamology at MD Anderson due to the scarring left behind in his left eye at diagnosis.  His vision has worsened lately; therefore we will be seeing the specialist in August to determine if there is any further damage or if he has possibly formed cataracts due to the steroids. 

Due to transplant, Jonathan requires all of his childhood immunizations be given to him again.  Because he has stayed sick with a compromised immune system for quite some time, he has only been able to receive his first round of shots.  He sees an Allergy and Immunology Specialist at Texas Children’s for this.  Because of his bone damage and steroid use, he sees an Endocrinologist Specialist at MD Anderson to monitor his bone density and areas of osteoporosis which he has in many parts of his body.

Needless to say, we get nervous for each time Jonathan gets even the sniffles.   August 2013 will be five years since this journey began.  He is 21 years old now and trying to live as normal life as possible which is hard considering all of the issues he continues to deal with.  But he is courageous, always has a smile, and willing to speak to anyone about pediatric cancer, signing up to be a bone marrow donor, or giving blood, platelets or plasma.  He loves the kids with cancer and visits them when he is at the hospital to show them that surviving is possible and that staying positive and smiling is so important to help them get through their long days in the hospital. 

Through all that he has been through and that we have been through, one thing has remained steady and strong and that is our faith in God.  We knew that when we were in those darkest moments and down on our knees in any given hallway, waiting room, or bathroom, that God was right there with us giving us the strength to praise Him for every little victory and trust Him through the trials.  Without Him, Jonathan’s journey would be meaningless with no lessons learned.  But we stand here today, still in the fight, able to rejoice in Him come what may, for it is our desire that His will be done.

Blessings,

Kevin & Melanie O’Malley

Rainy Days

Posted on July 12, 2012

The rain is softly falling as the morning unfolds in our busy household.  Sitting here in my office, I stare out the window at the drops falling off the trees, and drops coming to rest on green grass in puddles.  What a beautiful sight!  A lot of people don’t like rainy days, but I prefer to look at the rain as a new cleansing.  It’s like God is washing away the dirt and nastiness of the days, weeks, months, and years before this day and is giving you a fresh clean slate to start a new day.  The beautiful and amazing part of that is that you don’t have to wait for it to rain for God to wash away all of those days that have passed.  We all have the choice to start over anytime as followers of Him because He has saved us by grace.  Nothing we ever do will be deserving of His grace, but yet He gives it to us anyway.

Rainy days are a reminder to me of His glory, His love, and His gift to me of another day to start anew.  I must not waste the moments, but use them to honor Him and show others how much He really loves us and shows us daily.  We are just usually too busy and caught up in ourselves to notice, or we just like to be negative in general.  We can all change that – even on a rainy day.  Let God bless you and cleanse you today.  Accept His gift of another day and share it joyfully with someone else!  You will be glad you did 🙂