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Witness to a miracle

06/04/14 06:15

Written by Meg McElwain

Part One

It's every parent's worst fear, lived out by Charlotte mom, Meg McElwain, as her son, Mitchell, was diagnosed with pediatric cancer at just 3 months of age. Join Meg as she courageously shares her family's story in a eight-part guest blog series, Witness to a Miracle: Mitchell's fight against pediatric cancer.

Written by Meg McElwain

I am mother to Frank and Mitchell, two very special little boys. Each of them has a special story and a special place in my heart. My blog over the next few weeks will focus on my second child, Mitchell, and how his birth, baptism and life have changed our family in an extreme way in just two short years.


Part one: before diagnosis

My first pregnancy with Frank came just 6 months after my mother died. She was my best friend and, at the time, the most influential person in my life. She raised me and my sister as a single parent and was my inspiration and place to run in times of trouble. She died on February 27, 2007, just a week before her birthday on March 3.

I became pregnant with Mitchell in June 2011. At my first doctor appointment, I was given a due date of March 3, 2012.

March 3. I felt an immediate peace about my pregnancy and took this as a message from my mother that the baby I was carrying would be safe and protected.

As my pregnancy progressed, we learned I would have another c-section to deliver. The delivery was scheduled for February 27, 2012, exactly three years since my Mother died. An even more overwhelming feeling of peace and comfort came over me. It was as if God was saying to me through these special dates that He was with us and would protect us. I knew I should trust Him.

Mitchell Bays Turner was born a healthy baby at 8 pounds 5 ounces on February 27, 2013. As is tradition in my family, I planned his baptism soon after.

The date was set for June 17, and our family members made plans to travel to celebrate with us. The week leading up to Mitchell’s baptism was filled with great anticipation and hope for what his life would be like.

The day of his baptism was a beautiful. He was one of three children presented for baptism that morning. The opening hymn was one of my favorites, “Joyful, Joyful, We Adore Thee.”

I held him in my arms for the rest of the service. This was his special moment and I wanted my hold my precious child close to me while we worshiped so he might feel the intense love and devotion to his life that was coming from my heart. After the service, Frank and I hosted a large crowd of friends and family for a luncheon.

As, I changed him out of his baptism gown, I noticed there were strange marks that look liked bruises on the front of both of his legs. I was very confused about why he would have bruises.

I studied them and finally decided that either he was cold or the baptism gown had some type of detergent on it that was causing a rash. Pat, his nanny, saw them too. We discussed it and decided to watch it until the next day.

Pat arrived at 8 a.m. the next day. I was already working at my desk and Mitchell was napping in his swing. She asked about the bruises. They were still there so she encouraged me to call the pediatrician.

I was determined not to be the over reactive mother that I had been with Frank. I had become a joke among my friends and I had promised myself that I would not be as reactive with my second child.

I was reluctant to make the call. I was busy at work. But, I called. I asked if I could bring Mitchell in to see our primary physician, Dr. Mike Giftos. I told her that Mitchell had strange bruises and I thought I might need an exam.

The nurse’s voice changed. She stopped and directed me to put him in the car immediately and come to the office. I felt the sense of urgency through the phone. Pat and I loaded Mitchell into the car and headed to Eastover Pediatrics.

I felt something serious was happening but had no idea that the events that were about to transpire would change our lives forever.


Part Two: Diagnosis

I arrived with Mitchell and Pat, his nanny, at Eastover Pediatrics around 8:30 a.m. on Monday, June 18, 2012.

The nurse met us in the lobby immediately and took us back to a room.

Dr. Giftos examined Mitchell and called for blood tests. When he returned to the room, he looked worried and his voice was rapid. I knew something serious was happening.

He said Mitchell’s blood tests were not good; he was anemic and his white blood count was very high. I held Mitchell, rocked him and nodded, waiting for more information. He called Novant Hemby Children’s Hospital and told me a blood specialist was waiting for us there.

The nurses were preparing a bed for Mitchell.

A bed? What did he mean? Would we be staying at the hospital? My mind started to race. I calmly ordered him to be more clear and direct with his words.

He said the best case was that there was an infection in Mitchell’s blood. Then he paused and said the worst case is he has cancer.

Cancer?

The world literally stopped at that moment.

My surroundings felt like a vacuum. I was completely shocked. Pat started to cry. My attention returned and I was intently focused. All I could think was that if our trusted pediatrician just used a word like “cancer” to give me my baby’s test results, this indeed was a very serious situation.

I closed my eyes and asked God to be with us. I asked for my late mother to come to us. I needed to feel them with me and Mitchell. We needed their protection.

Next, I called Frank. I told him what to pack and where to meet us.

I gathered paperwork. I called for a minister Myers Park United Methodist to meet us at the hospital.

I drove to the front door of Novant Health and unloaded Mitchell. I was calm on the outside. The world and people around me were moving, but my functioning and thinking were surreal.

The nurses needed immediate access to his veins for a blood transfusion. I laid my body over Mitchell and held him tight against the procedure table as the nurses searched for a vein in his tiny arm. I sang the hymn Allelulia No. 1, another of my favorite hymns. Mitchell screamed and looked at me to save him.

The day passed with a flurry of activity in and out of our hospital room.

The oncologist told us by noon she was more than 95 percent sure that Mitchell had white blood cell cancer. In my ignorance of the disease, I had no idea that was leukemia.

Around 4 p.m., the oncologist confirmed that Mitchell had a rare form of infant Acute Lymphocytic Leukemia (Infant ALL) and only had a 40% chance of survival.

Based on his blood counts, she believed we caught it early but he would need surgery the next morning. Surgery would include inserting a double lumen Hickman IV line into the main artery of his heart where chemo could be administered, a bone marrow aspiration and injection of three types of chemotherapy drugs into his spine.

Suddenly Frank and I had to make decisions that we prayed would save our baby’s life.

The nurse gave us a mobile for Mitchell’s hospital crib. It played the hymn “Joyful, Joyful We Adore Thee,” the same hymn from Mitchell’s baptism service the previous day.

I knew God was there. He heard my cry. He would not leave me. I felt calm and settled in for the first of what would be 63 consecutive nights in the hospital.


Part three: A New Reality

The first week in the hospital was a blur. To protect Mitchell, we had to place a “no visitors” sign on the door. Chemotherapy drugs are designed to attack the cancer cells, but they kill the good blood cells in the body, too. This made Mitchell’s immune system and level of strength very low. He needed a sterile and isolated environment.

The stress of this new reality and all the responsibilities that came with it was starting to show in all of us. The intensity of this stress should have been debilitating for me, but I kept moving. There were times my body was in action doing things to care for my two children, but my mind was frozen and blank.

I did not cry until Wednesday of the week Mitchell was diagnosed. I only allowed it for a minute and did not let it happen again for over six months. I did not have time to cry. I focused on being strong and faithful that God would take care of us. Each time I left the hospital, I listened to Carrie Underwood’s rendition of “How Great Thou Art” over and over in my car. It gave me strength. The words of this hymn tell a beautiful story of how great our God is and how wonderful life can be if you fully put your trust in him.

I would be lying if I said I never feared that I might lose my baby. I’ve buried both my parents and have a lingering intimacy with grief. In those moments of fear, I focused back on the promise that, no matter what, God would not leave me.

As the weeks moved on, Frank and I both went back to work and tried to create stability for our two children in this new normal we had for our life. We were fortunate to have Mitchell’s nanny Pat on our team. She stayed with Mitchell every day while I took my laptop down the hallway to a makeshift office I’d set up in the teen activity room at Novant Health Hemby Children’s Hospital.

Frank and I both stayed in the hospital every night for the first 3 weeks, but when my mother in law needed to return to her home in Virginia, Frank started staying home at night with Little Frank. We switched off some, but it was extremely difficult for me to leave the hospital for long periods of time. I love and adore both my boys, yet when one is fighting for his life, it was easy to determine where I am needed most.

Having to make this decision still brought me guilt.

Mitchell fought hard to live. He barely weighed fifteen pounds. He had daily infusions of chemotherapy in the port in his heart. The drugs would cause diarrhea so severe that it would cause internal ulcers and burn the skin off his bottom. His diapers were deemed toxic because of the chemotherapy, so I had to wear double layers of gloves and masks when changing him. We put diapers in hazardous waste bags.

Once, Mitchell was transferred to the Pediatric Intensive Care Unit for skin burns so bad that there was almost no skin left on his bottom. He was completely neutropenic; which means his immune system was at zero. He was so tiny. He could have easily died from the slightest hint of infection.

Through all this, Frank and I seemed keep it together. At least that is what it looked like on the outside. Adrenaline and strong coffee kept me going until I finally reached what I now know was my breaking point.


Part Four: Momcologist

Mitchell’s cancer protocol required two years of chemotherapy. After 63 days of constant medical care and support, Mitchell was discharged. Frank and I were excited, yet terrified, to take our baby home.

He had an IV line connected to the main artery of his heart with two lumens ( medical tubes used to draw blood) hanging on the outside of his body. We trained with nurses on how to administer medication with syringes into the lumens. We learned how to run an IV machine so that we could give him fluids at night.

To eliminate confusion on dosage amounts and times, I took the lead on giving all meds.

We made visits three or more times per week to Novant Blume Pediatric Oncology Clinic for blood count checks and any needed blood transfusions.

I kept a suitcase packed, because at a moments notice something could change in Mitchell’s health that required us to check into the hospital. To this day, I keep a suitcase packed and ready.

Since Mitchell could not yet talk, we watched him very closely for any signs of distress. The intensity of this kind of monitoring was draining.

Transitioning from living in the hospital where everyone understood our new reality back to life among my peers was very hard. My friends wanted to visit or take me to dinner, but we had a no visitor rule and I had to be home at night to administer chemo and start Mitchell’s IV fluids. I became more isolated from my social groups.

Since Pat was there to care for Mitchell during the day, work became an escape from my new role as a “momcologist.”

I would dress in business attire and walk into business meetings where associates would ask about Mitchell. I would respond by saying things like “today is good” or “I’m grateful that he’s still fighting.” Then, I’d shift talk to business and relish in the hour or so of normalcy that sitting at the conference table provided.

Mitchell had been in an intense fight to beat infant leukemia for 9 months when weight of the stress I had been so effectively managing began to crash down on me.

The Hickman IV line lumens were showing wear from so much use. The IV needed to be replaced. During surgery, Mitchell’s small artery would not accept the new IV line.

He lost over 30% of his blood. The medical team described what was a scary moment for them when they had to apply extraordinary pressure to stop bleeding.

When Mitchell woke, the left side of his face had fallen and there was concern he may have experienced a stroke. It was terrifying and a shock for Frank and me. We waited. They ruled out a stroke. As months passed, his face returned to normal. We were grateful.

Soon after, a baby we were close to took a turn for the worse.

I stood at the bedside with my friend and fellow “momcologist” and watched her tiny baby on a respirator. I watched a fearless, young mother with unimaginable strength and steadfast hope. My worst nightmare unfolded before my eyes.

I felt desperate and helpless. I prayed. I was angry. I finally cried.

I was overcome by an intense feeling of responsibility to save my own child’s life. I became vigilant and my senses were intensified. For the first time in our journey, I understood the reality of pediatric cancer. I had to release all the emotions that had been building for months.

I wanted people to see what this cruel disease was doing to children; children that I loved.

I wanted to scream out for the families who are confined to hospitals and for the children who brave radiation and invasive surgeries to remove tumors.

I wanted people to feel the shock that I felt as I watched my 15 pound baby take and become sick from poisonous chemotherapy treatments that we hoped would cure the cancer that was hiding in his body.

I called my hairdresser and set an appointment to shave my head.


Part Five: Becoming a voice

After nine months of Mitchell’s two-year fight against infant leukemia, the stress, exhaustion, anxiety, fear and devastation that I was feeling from watching my baby and other children suffer became difficult for my emotions to handle.

I was so angry at what cancer was doing to children that I loved.

I was angry that children were dying and never got a chance at life. I was angry that so many pediatric cancer patients are not even old enough to talk and therefore cannot speak of the pain and agony that they feel.

I wanted to be a voice for them.

Often, society only sees a pediatric cancer patient in a hospital marketing photo. I wanted to show the side of pediatric cancer that I was seeing.

The cruel, ugly, unfair, agonizing side that only a parent, caregiver, doctor or nurse of a pediatric cancer patient knows.

The side when your child moans in pain and you comfort helpless cries of desperation that come from aching bones, internal ulcers or strange external skin burns that chemo drugs can cause.

The side where you try to explain to your child why he must undergo radiation that burns his skin with the hope it will shrink the tumor and cure the disease growing inside him.

The side where hope means having one more surgery to get that new tumor that grew overnight or a hope that a little more time on life support will allow the antibiotics time to kill the infection that has taken over a weak child’s body.

The side where all you want to do is hit rewind and do something; anything to end the nightmare.

Frank never flinched when I told him I was going to shave my head.

We have been together for over a decade. Time and life’s circumstances have helped us mature as a couple. He trusts and supports me when I’ve made up my mind to do something.

I called Pat and she met me at the salon. She encouraged me to think about what other people would think; especially in the business community. It was as if my conservative, late mother was speaking to me through Pat’s words.

My response was simple. I did not care what other people would think. I wanted to shock them.

I wanted people to look twice.

I wanted people who knew me to be speechless when they saw me.

I wanted those who did not know me to wonder what was wrong.

I wanted them to look closer at my face and see the pain and anger in my eyes. I wanted people to look behind my smile and see the depth of the hurt that was there.

I was moving forward with work and life, but the nightmare of watching pediatric cancer was eating me from the inside out.

Shaving my head was one of the most therapeutic things I have done during our journey. There were times I felt the fear that cancer patients must feel right before they walk into a room full of peers.

But, I also experienced an amazing freedom. It helped release all the stress and anger toward cancer that had been building for the past 9 months. Shaving my head allowed me to connect with Mitchell in a different way.

Many praised me for being so strong and for inspiring them to be strong, too.

Others looked puzzled as if to ask why I would mutilate my appearance. For those, I knew that I achieved my goal of making them look closer to understand why. And, even if they still didn’t get it, it forced them to ask “why.”

I came to understand that this was part of God’s plan to use our experience with cancer to inspire and help others.

I thanked Him for giving me strength, for seeing me through yet another dark place in my journey as a mother and in Mitchell’s fight to beat infant leukemia. I praised Him for showing me His faithfulness and the proof of His promise that He will never leave me.


Part Six: relapse

Over the past six weeks, our guest blogger, Meg McElwain, has courageously shared the story of her young son, Mitchell’s, battle with pediatric cancer. Meg has so much more to share, but unfortunately is not able to continue at this time due to an unforeseen turn of events in Mitchell’s health. Below, we share the latest information about the McElwain family, and ask that you keep them in your thoughts. Please feel free to share well wishes and comments below, and we will pass them on to Meg, Mitchell, Frank, and Little Frank.

Mitchell has relapsed.

The leukemia is back and is in 89% of his bone marrow. We will begin chemo all over again. The goal is to get him into remission and then he will have a bone marrow transplant.

Frank, Meg, and Little Frank will all be tested. Little Frank will most likely be the match.

Pray. Pray hard.

Ask God to protect Mitchell as we begin this very difficult and intense course of chemotherapy drugs all over again.

We will be in the hospital for a long time. I'm not sure how long, but we've basically moved back in.

We are in complete shock. Please pray for our family and especially my sweet baby Mitchie.

As Mitchell began his treatment again, it was a hard day for all of us. Mitchell was in pain because of the procedures and we also think his bones may be hurting since that is where the cancer is. We gave him a myriad of drugs including morphine.

It's always hard to tell the nurses to give my little baby morphine.

He rested well. I did not sleep much. There is so much on my mind.

I prayed a lot. I told God how angry I am that this is happening to us. I committed that I will trust Him, but begged Him not to take my baby from me.

Mitchell has proven that he can tolerate the hard chemotherapy drugs like vincristine and daunarubinson that will start today.

I need you to pray that the drugs will kill the cancer.

We need him to go into remission so that he can have a bone marrow transplant.

Please pray for strength for Mitchell and for us.

His red blood count had dropped to 5 this morning. We usually transfuse at 8.

Today is day 1 of treatment.

He will have another bone marrow test on day 8.

If the cancer is in remission then, we will move swiftly to Carolinas Medical System, where he will have the bone marrow transplant. If he does not reach remission by day 8, we will continue with intense chemotherapy and test his bone marrow again on Day 29.

I am still in shock, but I am moving forward.

I am staying close to the hospital today, but will go home to spend the night with Little Frank tonight. I promised I would take him on a "date night" to one of his favorite pizza places.

I plan to work on site at a client's office tomorrow. I have to get back to normal. Frank and I have to keep our income and insurance. Pray for us as we balance everything that is coming our way.

I will say again that I am in shock.

I just can't believe he was so close to the finish line and relapsed.

I am angry. I am sad. I am heartbroken that my sweet baby has to go through all this again. I am scared. I hate cancer and I'm telling you right now, that this disease has messed with the wrong Mama Bear.

When our family is gets through this horrific nightmare and my Mitchie is strong, I plan to work until the day I die to increase awareness and funding for pediatric cancer.


Part Seven

As we shared with readers last week, Mitchell has suffered a setback in his fight against cancer, with the leukemia in 89% of his bone marrow. Now being treated at Hemby Children’s Hospital, Mitchell celebrated his second birthday as no child should have to…..in a hospital bed surrounded by doctors and nurses. And while this is not the way his parents, Frank & Meg would have chosen for Mitchell to spend his special day, they continue to find hope and inspiration, and most of all love.

Below are excerpts from Meg and Frank’s Facebook posts, to let readers know how Mitchell is doing, what is being done and how others can help.

The week started with the McElwain-Turner family mixing up what they call a "Vanderbilt Special" (Desitin, ILEX cream and vasoline). It goes on under Mitchell's diaper for the next month or so in order to build a barrier over his skin so the toxic waste won't be so hard on him.

This is one of their main concerns over the next few months. Changing diapers is a major ordeal when an infant or toddler has cancer. They have had to purchase their own ILEX cream or have it donated, as it is hard to find sometimes, yet it is absolutely critical to keeping Mitchell infection-free.

Mitchell began a new round of chemotherapy treatment and is getting the same drugs that he got after his initial diagnosis, just in higher doses and frequency. He has undergone bone marrow aspiration, spinal tap and intrathecal chemotherapy, platelet transfusion, as well as doses of several other chemo drugs in his IV.

The only side effect they are seeing right now is that he is starting to lose his hair. He is also taking the steroid prednisone twice per day, which makes him fussy and restless at times, but since he is an active 2-year old, it's hard to tell if it's his age or the steroids that are causing that.

His blood counts are dropping and that is exactly what the oncologists want to see, yet at the end of the week of treatment, Mitchell still has cancer in 83% of his bone marrow. These levels tell them that the chemotherapy is working, but not fast enough, so new medications will be administered and he will be tested again in two weeks time. They are still hoping that he goes into remission so they can begin the bone marrow transplant procedure.

Frank, Little Frank and Meg are all moving forward and trying to maintain some level of normalcy, but they have not told Little Frank that Mitchell has relapsed. He does not understand that. He just knows that Mitchell is still sick and that they are in the hospital again. The boys started using face time to talk to each other in the mornings - basically all they do is scream at each other. It's cute.

Frank and Meg are back at work and Pat is trying to keep a very active boy entertained at the hospital. The shock has worn off and they are soldiering on.

The fabulous Child Life team at Novant Hemby Children's Hospital helped plan Mitchell’s 2nd birthday party, where the oncologists unhooked him from his IV and a few friends came to the children's theatre at the hospital for a Mickey Mouse birthday celebration. Mitchell had a great birthday celebration.

The McElwain-Turners remain very positive and have lots of options. Mitchell is strong and can beat this disease.

Many people have sent toys, which have been much appreciated but not needed. They have requested that friends send them gift cards to Walmart, Target or Harris Teeter instead of sending toys and treats to Mitchell. This way they can save their living expense money because traveling to another city for treatment could be an option if this next step does not work.

Most of all, they need prayers and positive support.

Meg would also like to remind readers of the Mitchell Bays Turner Pediatric Fund, a charity that provides funds to relieve financial stress for families facing a challenging pediatric diagnosis.

Grants include:
• Payment for the headstone at the grave of a child who died from complications from cancer treatment.
• Assistance with mortgage payments for parents who are underemployed or unemployed due to the time consuming task of caring for their sick child.
• Travel costs associated with taking a child with a life threatening illness to another city for additional specialized care.
• Funds to pay the final 3 car payments to relieve financial stress for a single mother that can no longer work while she cares for her child who is fighting cancer.

Part Eight: fighting

The week started out hard for Mitchell, as he was administered a 5-day chemo regimen, including a new steroid, two new chemo drugs and an anti-fungal, all designed to kill the cancer in his bone marrow.

Day 1

The effects of all of the new drugs in his system resulted in Mitchell being difficult to console. He was given several does of pain medication because his little bones hurt. He walks on his toes and that reports that his legs hurt. Mitchell’s nanny, Pat Slone, and mother, Meg, have taken turns massaging his calves and feet with lotion and can feel how tight his muscles are.

Mitchell is fighting so hard against drugs that are making him nauseous, agitated and achy. Despite feeling this way, Mitchell is still up playing and doing puzzles.

Day 2

As a result of the medications and drugs, Mitchell's immune system dropped to -0-, so he was forced to be in complete isolation. That meant no roaming the halls or visitors to the room. But he’s a normal two-year old boy and wanted so badly to go "walk" every time he saw the door open. Meg and Frank just tried to redirect his attention to something else in the room.

The oncology team monitored Mitchell’s vital signs and watched how he reacted physically and neurologically to the extremely high dose drugs. He is getting special eye drops every 6 hours to protect his eyes from the toxicity of one of the drugs.

He seems to be hallucinating at times and is very unsteady on his feet. He fell from a sitting position off his desk today.

While juggling work, being a mother to Little Frank, and caring for Mitchell, Meg reported, “It's hard to see my baby this way. I stood next to the bed as he wrestled with going to sleep. I kept whispering to him that God and Jesus are here and encouraged him to fight through the awful side effects of the chemo drugs.”

Day 3

Mitchell spiked a fever and is in pain. Two chemotherapy drugs and the addition of three antibiotics to cover the fever run into his IV.

The oncologist says that a fever on this chemo drug is expected. Mitchell just wants to be still and be held so that is what the family is doing for him.

Day 4

Mitchell had very little energy and is running a low fever. He displays flu like symptoms.

He received a platelet and blood transfusion overnight. The oncologist gave him these blood products to build his strength and help his body get through this last day of chemo and fight the infection that is in his blood.

Day 5

Today is the last day of intense chemo. Last night was very scary and the team from the Pediatric ICU came in to evaluate him, but thankfully, Mitchell did not need to go into PICU. This is a perfect example of how quickly things can change when fighting this awful disease.

The oncologist advised that Mitchell's bone marrow came back as a very common type, so they are not concerned about finding an exact match in the national registry. Frank will be the back-up if a willing match donor is not found. This is good news and a huge relief.

Unfortunately, there is an infection in Mitchell's blood, most likely from bacteria in his gut. Having an infection is extremely dangerous since Mitchell's immune system is at -0-. His body will have to fight extra hard against the chemo side effects and now against the infection as well. His heart rate is up and blood pressure slightly down.

The next 24 to 48 hours are critical.

Post Chemo

Mitchell is very weak and is suffering from cramps and upset stomach, which are side effects and could last several days.

But Mitchell got a stable report today. The doctors are pleased with his mood and physical appearance. He is up and playing more than he has over the past few days.

They are so encouraged and impressed by how well he is doing after the blood transfusions and believe the combo of antibiotics are working and that he will beat this infection.

However, he is having terrible issues with his stomach and Meg and Frank are changing a lot of diapers - sometimes 2 or more an hour.

As he gains strength, Mitchell is scheduled to have a spinal tap and intrathecal chemotherapy injected into his spine. His hair is now falling out by the handful and it makes his scalp itch. The nurses are going to shave his head while he is sedated. Frank and Meg are meeting with the bone marrow doctor to begin discussing a bone marrow transplant.

Meg, Frank & Little Frank

Meg and Frank have been taking turns staying in the hospital so that they can also focus on little Frank and their families have come to help. Little Frank is still working through his fears and sadness that Mitchell is sick and so they are trying to give him extra love and attention.

It has been hard for the family to see Mitchell this way and it wears on their emotions. On the outside, Meg, Frank and Pat stay strong and happy for Mitchell to see, but on the inside it tears at their stomachs, heads and hearts.

The past two weeks have been some of the most difficult of this journey for Meg. Her strength and faith have been tested more than she ever could have imagined possible.

Yet Meg’s faith remains steadfast….”I know that God is with us and that He has a plan, but it's still hard for me to let go of the worry and stress that comes from seeing my baby suffer from the harsh side effects of the drugs he is taking.”

It means so much to Meg that there are so many people praying for and supporting their family and she asks that people please keep praying for Mitchell and their family.

Part nine: a mother's struggle

This week has been a roller coaster for Meg and her family, as Mitchell’s health has gone up and down.

After having his head shaved while sedated, Mitchell was weak and restless, in particular due to stomach issues he has been experiencing resulting in the need for 2-3 diaper changes every hour.

As Meg and Frank make plans and remain hopeful for a June bone marrow transplant, Meg recognizes the need to take one successful day at a time.

However, through all of the technical medical verbiage that has become a part of Meg’s daily vocabulary, at the end of the day, Meg is a mom loving, praying, and fighting for her son.

Below are some of the touching and heart-wrenching thoughts Meg has shared throughout the week via her Facebook page:

I am not sure that I can put into words how difficult it is to grasp the reality of the physical impact the chemotherapy treatments are having on my sweet baby boy. I can't help but wonder if this experience will leave emotional scars for him like I've seen in other young pediatric cancer survivors.

It's hard to be away from Mitchell, but I know I have to keep a balance for my own sanity. It is so comforting to know that he is in excellent hands with Pat Slone while I am at work.

I love my career and the work that I do so much. It feels good to be able to leave the hospital and all the stress that is here to go do that.

However, after I've been separated from Mitchell for more than 12 hours, even the ones that are sleeping hours, even if I look calm, I start to feel sick and experience panic until I get back to him at the hospital. I can't help but feel guilty and wonder if that is because I was not here with him.

It is so hard to live this way, but we know that we have no choice.

Attitude is a huge part of the battle, so we will remain positive, hopeful and focused on supporting Mitchell and making sure that Little Frank feels safe and knows it is okay for him to be scared and sad. As I have told him many times, me and his Daddy are scared and sad, too.

Little Frank came to visit today. Mitchell was laying quietly in his bed and did not show much emotion when his brother arrived. Little Frank asked why Mitchie did not have any hair and why he was not smiling. Big Frank and I explained that it's because Mitchie is very sick and that the chemotherapy made his hair fall out. Little Frank was so well behaved while he was here and told us several times that he is sad that Mitchie is sick.

It's hard for me to see my 5 year old forced into living such a mature experience.

I wrote earlier about how the recurrence of Mitchell's cancer and the suffering that I am watching my baby endure has tested my strength and faith.

I have continued to pray and talk to God about my fears, exhaustion and anxiety. I pray that He will let Mitchell live so that I can watch my boys grow up together. They love each other so much and I don't want Frank to lose his little brother.

There is no immediate danger of this happening, but because of the big disease that Mitchell is fighting, it is a very real fear.

I am at peace today because I accepted that God is in complete control of this journey. I know that He has a plan. I just hope that His plan is the same as mine.

I have no way of knowing what the outcome of Mitchell's battle against cancer will be. I believe in my heart and feel in my soul that Mitchell will beat this, but I know that only God knows the whole story. I will stay faithful and trust Him. I know He is with us and is protecting us and that no matter what happens, Mitchell will win.

My prayer is that victory is Mitchell beating this disease and getting to stay with us on Earth to share his story and inspire others.

These are really intense thoughts and feelings to have to face.

I am not one to wallow in my misery. It doesn't do any good. However, I have thought numerous times over the past few weeks how hard it is to have to be a "grown up" and deal with all of this.

I love the family that Frank Turner and I have created and I just want us all under one roof doing normal family things like sharing meals, laughs, play time and fun. I miss the chaos of the bath and bedtime routine.

I pray that we will have all of that again very soon.

Mitchell Bays Turner lost his battle with cancer on Sunday, April 13, 2014. Meg, however, doesn't see it as a loss. I have so much peace today. Mitchell won. He did not beat cancer, but he lived his life with more love than most people receive in a lifetime. He fought hard and taught us all so much. While we will always have a missing part of our family, we believe that God gave Mitchell to us for a special reason. Mitchie is safe, happy and with all his family that moved on to Heaven before him. We know that we will see him again.

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