Home and Our Second Bone Biopsy

William the Conqueror has been home for six days! It has been an incredible whirlwind of fun, stress, laughter and joy. This morning I discovered that I’ve been ignoring an amount of fear and dread. A large, invisible hourglass full of descending sand seemed to sit on the hearth between our family pictures, marking how little time we have left. While we won’t have to return for the second round of chemotherapy until Monday, today was a frightening day. Today William and I had to return to UNC for a bone biopsy to check his counts and to see how successful the first round was. I packed a bag for a day-trip and then packed an overnight bag, just in case.

I came face to face with the unlikely reality that we may be checked in and forced to stay. He seems healthy and there isn’t any indication of need, but the increasingly familiar road to our home away from home seems like a pathway to a prison as much as an escape to freedom. I had to spend some time praying and bringing my requests to God because a Thanksgiving weekend together isn’t promised. “Do not be anxious about anything but in everything, with prayer and thanksgiving, give your requests to God.” Philippians 4:6
This process is teaching me that trials reveal how strongly you believe what you know you believe. I wasn’t ready. What if I couldn’t get back in time for the school pick-up? What if I missed out on a holiday again? The laundry is piled up and the potatoes aren’t peeled. There were more hugs to have and nights to sleep more than 4 hours! At home there were countless responsibilities. At the hospital there was uncertainly and circumstances far beyond my control. I had to drive the road between them before dawn.

At 5:25am we left in the rain but William endured the car ride quietly. The usually beautiful scenery was enveloped in darkness and taillights. I turned the radio on to a station that was talking about Moses sending out the 12 spies to check out the promised land. 10 were terrified but Joshua and Caleb came back saying that yes, the land was full of giants but GOD would overcome the obstacles that overshadowed their size and strength. What a renewal of my mind in the dark.

We arrived on time at 7:00am as the sun rose over UNC. It felt strangely comforting and very familiar. William clearly recognized where we were and began to chatter at those around us. Soon after he started “acting two” and yelling, “EAT!” He isn’t allowed to have any foods due to the anesthesia, so the check-in hour is our most challenging.
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After checking in, his first familiar nurse came by.
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Do you see? Do you see what I am facing here? He is spoiled rotten, I tell you!

Worse, the adorable college volunteers then came by to play. He didn’t care if I was in the world at that point.
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By now the doctors were arriving and making a bee-line. “William! No bow-tie today? How’s it going, Buddy?”
I turned and saw more familiar faces; another family we have been hospital neighbors with have a child with another form of Leukemia. The boys are similar sizes and both have 3 year old brothers. We bonded at the pantry and family fridge. They were sitting in a chair waiting for vitals as well. They were being checked in today after Luke’s biopsy. We chatted about the holiday schedules at the hospital and joked. They hope to be out by Christmas. We get Thanksgiving because we are a month behind. A few ‘time share’ parents who had gone home were having appointments today. It was a bit of a reunion and reminded me that God always provides reasons to be joyful and reminders that we aren’t alone.

As William went in for anesthesia I went to the downstairs pharmacy and ate a few granola bar while I waited. Only 5 weeks ago we did this same routine. It was intimidating and foreign. Now it all felt second-nature although it was only the second time. That’s the comfort of the Holy Spirit’s presence.

As I walked upstairs the bed was wheeled out with my sleeping Conqueror.
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He usually awakes suddenly and comes up swinging but this time he slept for ten minutes, jerked awake, looked around and was soon smiling.

The doctor came over with a paper of his counts… if you aren’t in the medical or “sick family member” profession be patient.
His hemoglobin jumped up to 11.1! His platelet count that is often between 53-91 (and indicates health) was….412! I have NEVER seen it higher than 120!

Now the big one..his ANC. That is the level we needed to be at .5 to go home. It rose to 1.5!!!!
(Do a happy dance and pretend we won the Olympic competition, Superbowl or Hunger Games, please.)

People, God provided miraculous healing. THANK YOU for your prayers- they work! With a happy but hungry baby in tow, we were excused to go home. We were driving back within three hours, while last time it took six.

I had to come face to face with my ways of thinking. The usual holiday pressures with the feelings of strain that this will be the last time our family will be home together in 2014 led me away from trusting God’s provision. It is easy for me to be grateful for the things I’m used to. I’m thankful within trials as well, but being at home where things ‘should’ feel a certain way brings new challenges. This is a new walk for our family and both my spirits and my hair fell flat this week. I felt comforted that we had made it through Month 1 and a twinge of self-sufficiency that we can have a great holiday together. No wonder we are to turn to the Lord daily. I am at home with a renewed mind. William is home with a stronger body and a testimony of how God’s mighty provision. We’ll see about the biopsy results soon but I am quite convinced they will also testify to the Healer.

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HOME!

The past three days have been a whirlwind; I am sorry for not posting updates!
First of all, THANK YOU FOR PRAYING!
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We are doing well! Williams’ counts continued to strengthen but we were still far below the .5 ANC level we needed. Wednesday morning was the first time we hit that magic .5 mark, which meant it would be Friday before we could leave. I headed home to have a much-needed 24 hour break, leaving William in the care of my most beloved sister.

I was 20 minutes down the road when I was called back… the doctors were ready to let William leave early! They could see how exhausted we both were and thought it was best that the family be together now that his counts were steadily climbing.
I turned around and a few hours later we were waving goodbye to the lovely nurses and on our way.

We walked into the door to see the Big Brother. Seeing his Aunt walk in the door instead of me, he grinned and said, “Who is it?!” We both received big hugs. It was a hectic evening of sanitizing, washing and getting the medicines in order.

After lots of laughing, playing and unpacking, I was able to put the 3 year old to bed with my husband at my side. I heard him speak more that evening than I ever had before. I am always heartsick that our family circumstances have caused delays and made things more challenging for him. Seeing his resilience and sudden progress makes my heart soar. Putting him to bed was a blast. He excitedly bounced up to give us kisses and yelled, ‘I wuv you!” He went asleep giggling.

Furthermore, my sister makes me laugh harder than any other human being on this planet. Add my mother into the mix and someone needs to deliver oxygen.
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Having that kind of person around heals the heart when the muscle gets stretched. Laughter is good medicine. FIND THE HUMOR!

Being home is overwhelming. It is only now that I realize how exhausted we are and how far we have to go. At the moment we are very carefully cleaning and sanitizing everything. We still have to be careful to protect him from germs and risk of infection. This also means keeping toys and belongings separate from his older brother.
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Breaks my heart! Of course, after William goes to bed his big brother likes to steal his glasses that everyone swoons over.
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Of course, a farsighted brother means that he wears glasses like my mother.
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May he always see from a new perspective because of his brother. What more could we ask for than to see through the eyes of another?

My home is full of cards, packages and meals. I am amazed at the blessings from all of you. In the middle of this torrential downpour it feels like all of you are standing over us with umbrellas and sandbags, coming to our rescue. You have prayed, cooked, mailed and called. I stand amazed.

It is a bit like coming home from a cross-country trip; there were 6 loads of laundry to do (to sterilize what was here as well), lots of cleaning to do, new medicine to organize and hours of unpacking. Hopefully tomorrow we can get back into the swing of things.

It is evident to me how gracious God is to us. My marriage is stronger than ever. My sons are flourishing right now. I feel held in the perfect peace of Jesus despite knowing 9 days from now we will have one of our most difficult months ahead. Jesus is so faithful. The trials allow me to see Him more clearly than ever.
THAT feels like home.
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Day 19: GREAT things to report!

Good morning!
This is the day the LORD has made! We will rejoice and be GLAD in it…even though church looks like a computer screen from here. Still, two are gathered!
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Here is the church, here is the steeple…open the doors and see all the people!

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We have GREAT news for today.
First, we BOTH had a great night of sleep and real rest. We woke up ready to praise. The nurses and doctors were happy to see a familiar smile again. He was pretty excited to be feeling better.
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His counts are going up! We are watching the infection-fighters and white cell counts and both are steadily getting stronger. If we can get them a bit higher and get them to stay there for three consecutive days… we can come HOME. The earliest day of departure (which is still a bit unlikely) would be this coming Thursday. Hopefully shortly afterward we can go home and have an office check-up for a bone biospy next Tuesday. We may even be able to stay home through Thanksgiving!

That is when William said something new; “Dank you!”

My child can give thanks. How fitting.

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Now, there are a few obstacles in the way which means I can tell you EXACTLY how to pray!

First, William’s g-tube that helps liquid foods and medicine go directly to his tummy is looking pretty red and infected. It’s hard to tell the cause, but it needs to be treated. For now that means his nutrition will be through IV and my boys get angry when they are hungry.
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We will be doing some topical treatments in an attempt to avoid more antibiotics, particularly the “Vanc” which causes him so much pain. It also means the doctors get to draw on him with marker. He is tickled pink to be an art project.
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He is also being a silly boy, smelling his stinky feet.
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His counts are still a bit low today. His infection-fighters are at .3 today. We need them to be at .5 for three days before we can get home. PLEASE pray that it happens.

We are so very excited. We can also have visitors over age 12 soon as well. We feel so blessed to have your friendship. We may be far away but we are closer to you than ever. We love you.
Celebrate today!

Day 18: A 24 Pass

24 hours ago my small suitcase was packed and ready by the door. It had been an intense morning that blurred with a sleepless night. Today I am sitting on my bed again, excited to share good news and some silver linings I’ve found during a stormy week.

On Thursday night at around midnight William broke into a fever. Just when things seemed easier, a storm came on the horizon.
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This meant that the drug that causes extreme reactions would be back and the night would be restless. We had scattered breaks of sleep over the next four hours. At 4:00am I walked the dim halls and got a drink of water to take a break from the crying. Four other doors were cracked. Peeking in, I could see exhausted mothers comforting crying children. I was thankful I let the room; I realized others were in the storm too.

Bright and early on Friday the action started. So many people were in our room from 5:00 am until 9:00 am that even my shower was interrupted half-way through. One poor nurse was shocked and slightly embarrassed at the sight of me in a towel.
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She soon regained her composure and informed me that our day was about to get busy.

William was squeezed into the CT and MRI schedule but it required no food. (Ultimately until 4:00pm.) We were wheeled down by a lovely man with a positive outlook and got ready for William’s close-up.
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Several men in the halls said, ‘It’s Superman!” My exhausted hero loved it.
The CT scan meant that William had to be strapped to the ‘papoose’ and tied down. I had to hold him while he tearfully looked at me and cried, “Mom! No!” My emotional hard-shell cracked a bit under the exhaustion.
The staff were quick, loving and effective. Results were in quickly and no infection was located. Soon afterward the recreational therapists came in for some playtime. Will was thrilled to get out of the crib and to play with someone other than me!
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At noon the cavalry arrived in the form of my mother in law. After a quick hello and a briefing from the doctors, she settled in for a 24 hour shift and I bolted out the door, leaving a raging storm behind me. For 24 hours, I could go HOME.

As I drove home I wondered what awaited me. While I am fighting with William, my Hero is not only working but trying to maintain a household and raise a three year old that has been through his share of challenges. So often when one child is in crisis, the situation for the other children becomes strained. MANY parents I know feel guilty about this right alongside me. The siblings can really struggle, which we’ve seen firsthand. Amazing friends have stepped in to pick up Firstborn from school and have adopted him into their families for a few hours each week. With different people around, relatives in and out of the house, a totally inconsistent routine, a brother missing and taxed parents, I had to idea what this season would bring. Usually he becomes very introverted, refuses to speak and lashes out. He had made incredible progress in the two months prior to the diagnosis. Mothers know the feeling of wanting to shelter their children from such things. The best we can do is pray and wrap our arms around our beloved babies.

I was desperate to sleep but two handsome men waited for me at home. I got back just in time to pick up my little cowboy from school. This is when the clouds broke and the silver linings started to show.
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My firstborn has a great smile, but when he is surprised to see me his smile is STUNNING.
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Over the next 4 hours I learned that my introvert who often refuses to speak is now speaking clearly and in sentences. We played, went on a family walk and braved the fall chill at the park.
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Rather than lash out and totally regress as in the past, I see bright silver linings. He has excellent reports at school, has new skills emerging and is overcoming some obstacles. My baby gave me cuddles and hugs along with a healthy dose of, “Dad is MUCH cooler.”

At home there were even more of silver linings. I had uninterrupted showers (and dried my hair, Ladies!) I saw a fridge full of great meals provided by people who love us, and y’all can really rustle up some grub! I was able to put my so to bed for the third time in three weeks. I didn’t have to worry about dishes, laundry or messes… I simply enjoyed time with the men I love. I had a night of sleep and true REST. I heard my Hero’s voice reading the Word of God to me and praying over us. We reminded each other of God’s promises for us and encouraged each other.

As we packed up and drove the increasingly familiar road between our home and the UNC timeshare, I really noticed the beautiful fall leaves. It’s gorgeous! When we came up to the hospital today it was as a family. The journey was restful.
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When we pulled up to the hospital, he exclaimed, “There Wiyam!” For a moment the whole family was in our little hospital room and simply happy to feel the presence of the ones we love. Hunkering down during a storm with loved ones IS a silver lining.

Now in this familiar room I find that William is feeling better, has rested and is smiling again.
The silver linings can’t come without storms.
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It has been good to enjoy a 24 hour storm shelter. Now it is back to shining in the storm.
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Day 16: Turning the Corner

Good news! The worst is over for now!

The chemotherapy hasn’t caused the problems. In fact, after the infusions we could go home…in theory… but the reason this treatment is in-patient is because of the risk of infection. As is expected, the usual bacteria on our bodies that are usually benign saw the lack of natural defenses and attacked. Jerks. A basic strain of strep that usually lives on our bodies caused major problems. The solution caused a LOT of pain. The need to keep germs out is why we can’t have visitors with any fevers, ‘little’ cold symptoms, or kids under 12 right now. It’s for William’s protection.

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The medicines that are helping fight a basic blood infection cause nasty reactions and William’s reactions were more extreme than others. The good news is, he is 24 hour fever free! All the yucky medicines are gone! The anti-fungal has helped his mouth sores and his tummy troubles are finally easier…

Within 4 hours of the nasty drug being out of his system, William came back!
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He began to play and chatter a little bit. Speech and Recreational Therapy came, which was a MUCH needed break. He’s getting sick of being in the same room with me all day.
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He was finally feeling up to flirting with the nurses!
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He still spent a lot of the day a bit strung out, but he took a LONG nap. We both feel refreshed

Last night we had a visit from the amazing Jennifer, who has been a friend for 8 years and even a bridesmaid in my wedding. How two Texans ended up here is a God-thing; we have supported each other through some unexpected journeys! I asked for help reorganizing our cluttered room and she set to work rearranging furniture and making the place more comfortable. Then she brought back a college tradition…the WORD WALL.

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From funny quotes to uplifting words, I love a great ‘writing on the wall’ area. For this season, I want the Word of the Lord to be everywhere so that it is easily committed to heart and available for all to read.
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As you are wanting to send things and be encouraging, consider sending your favorite verses! Feel free to send them on note-cards too, so that I can see your handwriting. The personal touch makes me happy. (Personal quirk and memorization tool!)
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It is amazing how we have been uplifted and encouraged by each of you. We are isolated and a bit cut off from the world but we are feeling loved and surrounded. Hopefully, the worst is over. Now we watch and wait to see if we can prevent infection and get his counts looking strong! At the end of the 28 day cycle (2 more weeks) we get another bone biopsy to see how things look. If we are holding steady… we might be able to go HOME for a day or two…but let’s not get too ahead of ourselves here. One day at a time we are pressing on, but every day has a new challenge and a new blessing.
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Moreover, his lack of fever means that my AMAZING mother in law can spend her final day here snuggling and caring for her youngest grandson and I can go home for 24 hours to be with my other two best guys.

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The 4 hour drives are cutting into our time and budget, so we are SO thankful for the donations that hae been made. They are helping us to stay focused and strong!
http://www.gofundme.com/williamswarriors

We are carrying on! Today feels like seeing a gorgeous sunrise after a long few nights of battle but I am constantly amazed by God’s grace and my son’s perseverance.
Please keep praying for all of us here. It has been a very busy month full of sorrows in the children’s hospital. These staff members need encouragement and prayer– and we are just the ones to do it!

Day 14-15: I Will Give You Rest

Folks, the past 48 hours have been vicious.

William has been fighting fevers which means a round of antibiotics. Unfortunately, William is a redhead which means he reacts strongly to medication and it takes a higher dose of pain medication to have the same impact. It’s not a myth; it’s science. The 40+ year doctors here confirm it.

This resulted in a red scalp, itchiness, not wanting to be touched, explosive tummy troubles, mouth sores, and a serious case of the grumps.
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My little buddy kept on dancing throughout the day right on through it, as best he could. He nailed the ‘sobbing sprinkler’.
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It was miserable. It’s a 2 year old with leukemia; proof of a broken, fallen world.
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For the last two days we have prayed for REST. One of the patron verses of motherhood, “Come to me all you who are weary and burdened and I will give you rest” was taped over the diaper changing table for a year. We prayed for literal, physical rest for William as we gave him doses of pain medication. I tried every mom trick. Finally, around midnight he allowed me to hold him. He finally fell asleep and rested in my arms after a wild fight.
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It was a challenging night for the entire hall. Another little girl spent the night practicing her glass-breaking Ella Fitzgerald impression. The poor nurses were flying from room to room. The hall just felt thick with challenge and oppression. Then there was this room…
We were covered in prayer.
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A Buddy Walk shirt represented thousands in Texas walking for William and hitting their knees in prayer. An Aggie blanket recently made by a most beloved cousin’s daughter wrapped us up along with the prayers from her church and family in her state.
Our bed is flanked with letters, chocolate and gifts from Texas, Arkansas, Colorado, North Carolina…
We even had a late-night message date with Will’s internet buddy (and crush, if truth be told) Claire. She also has Down Syndrome and is facing other challenges. She returned to the hospital for inpatient care from a high fever and kidney infection 4 days after open heart surgery. These two smile at each other through the screens and we mommas laugh and compare “the pumps won’t stop beeping!” and “Yours sleeping? Nope, mine either” moments. Pray for Claire and her family!
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He smiles and dances when he sees her. That is the joy I get from y’all as well!

God is faithful. Jesus is present. He is with us and so are you.

We are starting off the day stronger than yesterday but still with difficulty.

Several people have asked, “How can we pray? What can we do?”

Right now I simply ask that gifts continue to go to my husband and son at home. The meals have been outstanding for them. Money for gas so we may see each other and switch battle stations helps tremendously as it is a 4 hour round trip from our home to our ‘timeshare’.
Pray we can stay healthy and see each other, particularly the three year old during this season.
Pray for physical freedom from pain and for us to conquer AML.
Pray for our family and our strength in every way. We miss each other terribly.

Most importantly, pray that this temporary trial will not seem so consuming and that we can encourage others here. This is just for a time. Pray that we can keep our sights on the long-term vision while only taking on the tasks for today. If we survive the trial but complain or become beaten down, it isn’t enough. Pray that we can find our strength in the Lord and rest in his presence. We must finish well, serving the Lord and others.

A dear friend and true battle buddy has also started this for Gofundme for us. THANK YOU to those who have contributed, especially the Redus family for their abundant blessing of $500!
http://www.gofundme.com/williamswarriors
We are so very thankful. We are resting in God’s faithfulness to provide encouragement and visitors. We love you all very dearly. Thank you for lifting us up and fighting for us.

Day 13: Great Is Thy Faithfulness

The story of tonight began in the fall of 2012. I sat in a light green waiting room chair in the maternity waiting room of Womack Army Hospital. In a fairly empty corner near the glass windows, I eagerly wanted to see the doctor.Four feet from my chair, on the other side of the glass wall sat an old wooden piano bench. This tucked away corner is the place where a wonderful older man plays. I had hoped to see him but today the bench sat empty. It was one more way in which I felt alone. My youngest son, then still 1, was at home with my father. My husband was fighting in Afghanistan. It had been 24 hours since a phone call came to tell me that I was carrying a son with Down Syndrome.

In that quiet moment I rubbed my belly and took deep breaths to keep the tears from dropping down my cheeks. In one exhale I almost audibly cried out, “Lord, how am I going to do this?”

Smooth, familiar notes peacefully infiltrated the silence. It was the opening cords to one of my favorite hymns, “Great Is Thy Faithfulness.”

As the piano played, the words I know by heart rang through my very Spirit again:

“Great is Thy faithfulness,” O God my Father,
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not
As Thou hast been Thou forever wilt be.
“Great is Thy faithfulness!” “Great is Thy faithfulness!”
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
“Great is Thy faithfulness,” Lord, unto me!

My circumstances changed; God did not. He is faithful when it feels like he has failed. The promise of God’s new mercies and that he would provide covered me as I faced my first appointment on the behalf of William.

I’ve not heard the hymn since without thinking of that day and my darling piano player. I longed to meet him and tell him how God used him that day.

A little more than a year later, my sweet William was in my arms as I walked through the now very familiar hospital. There he sat- elegant, weathered hands beautifully drawing a masterpiece from an old instrument. Between songs I introduced myself. A hand turned with age and yet graceful from piano playing reached out and took mine. “I’m Eugene.”

He had a dazzling smile under weathered skin and piercing blue eyes that stood out against his brown complexion. He had never studied music professionally; he had worked two jobs to pay for his sister to become a professional musician. Now he played simply to brighten the day of others. I joyfully told him of the day he reminded my that my God is faithful. I held out my son to show him the proof of God’s faithfulness.
Mr. Eugene insisted that I record him playing that sweet refrain. As we said our goodbyes, he said, “I’ll play you out.”
I waited until the final refrain triumphantly thundered before I walked through the revolving doors of the hospital with a resolved smile. My God is indeed faithful.

Now, in 2014 I sit next to the same child struggling to beat leukemia. He has been miserable for days and been held by those who love him through it all.
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As his fever broke and he is trying to rest, I desperately found the video of Mr. Eugene. As the notes played, my Conqueror finally rested.
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Behind me is a stack of packages. Many of you sent cards, gifts, food, lotions, a cape and crown–all I could need has been provided. My son is being cared for in the best medical facility available in this region. He is teaching me every day how to trust Jesus and to go to him for strength and mercy DAILY. He has used YOU. As we are weak and crying through the fight of his young life, I am constantly encouraged that the throne of grace is being charged on our behalf. You have been the hands and feet of Christ. You are upholding us. You remind me daily that God’s faithfulness is great and never, ever fails.

You are witnesses. We are more than conquerors through him that loved us. Great is Thy Faithfulness, Lord unto me.