The Ugly Side of Suffering


Suffering brings out my worst, leaves me alone in a room with it and locks the door. Cancer makes me ugly.  Presently, I am horrified by my behavior. I was ugly to…my mother. Yes, “Your Momma Said You’re Ugly.”

My mother was offering wisdom and money in a moment I was utterly unprepared for— and I snapped at her with a death glare. I didn’t realize I had done it. Who does that?!!! She took time off of work to fly here. She has done hours of housework and errands, gotten up multiple times a night and missed  events at home because her child was suffering and I acted like an ungrateful, spoiled brat.No, it is NOT understandable to be impatient and lose your ever loving mind and use the excuse of stress and both my sons enduring  cancer. That’s what Satan wants you to think.

My young kids often behave that way as I supply wisdom and green veggies. Frankly, it hacks me off. I should know better.  Like a good mother, she did NOT let it ride. I apologized and she forgave me.


She modeled grace and beauty in the face of something ugly. Then she fixed it. She helped me clean up my act and regroup. She gave me an hour to go from this…


to this.


(Me: Okay! Hair is clean! Mom: Go dry it nicely. Me: My face is washed! Mom: Lotion. Don’t forget your neck.  )


I can clean up and put on a brave face, but no amount of any self-care or product is going to fix the fact that what is on the inside is always the same. We can cover up ugly with a lot to disguise it, but it remains. Frankly, it doesn’t take more than 18 hours to return to my natural state. It can get “ugly as sin”.

Trials and challenges are not an excuse or cause. They simply strip away the good I have to offer. When patience from sleep is gone, comfort of ease is lacking and I am lonely- the true self shows.  There is no barrier or buffer to hold my sharp tongue and selfishness at bay. It is a hard task to keep purging the ugliness and sin that is revealed. It is hard work to destroy the sin within me.

Image result for reavers river

Presently, all the fear, sadness, frustration, and hurt is coming out as anger. “In your anger, do not sin” isn’t easy on 3 hours of sleep across three months.

For every person with an “inspirational success story” from a major crisis, there are as   many who are bitter, angry and broken. They become defined by it.   You can’t pick yourself up by the bootstraps forever. There is no ‘fake it until you make it” with Jesus.  I need Jesus to save us and the Holy Spirit to help us put sin to death daily, even when it rares its ugly head. When suffering people have increased unity with Christ, they see greater sin in themselves.

To become beautiful we must be cleaned and put on Christ. To quote Dolly Parton in Steel Magnolias, “It takes some effort to look like this!” Effort indeed.

The skill that one must master during this Great Clash is the art of the apology.  Sadly, I’ve had a LOT of practice…especially with my kids.

Step 1: Never put a but in your apology. An apology with an excuse is a defense.

Step 2: Ask for FORGIVENESS.  I’m sorry is not enough.”I’m sorry” and “It’s okay” doesn’t fly in this house. It’s “Please forgive me” and “I forgive you”.

Step 3: As VeggieTales classic “King George and the Ducky” teaches us:

“Ask God to forgive you. Ask Thomas to forgive you…and then make it right.”

Make changes. Ask for help. Serve the one you offended. Clean the brother’s toys. Help with the chores when you neglected someone all day. Speak kindly after a harsh word. Confess to others who will help you become more holy, not tell you why you were right. Wronging someone else IS NOT right.

Then repeat, repeat, repeat.

Makeover shows are more entertaining when the transformation is more dramatic. The wonderful thing is that beauty stands out against a backdrop of ugliness. Thank the Lord for a perfectly exquisite Savior who makes us beautiful by making us look like Him. After all, people who look like Jesus are darn good-looking.



Chemo Day 1: An Ode to Sarah

The proverbial “they” say that we are to consider others’ perspectives, “walk a mile in their shoes” and consider that we never know the full story of another. On this first day of Jonathan receiving chemotherapy, I am responsible for the home-front while my husband takes the hospital shift. He has to drive, park, wait, prepare a crying and non-compliant child for port access, keep the IV pole close for the infusion, and feed and entertain Jonathan. Then he must transfer to a room and keep watch all night as the rough things begin. He has to keep the IV line clear and replace it when pulled, help Jonathan make it to the bathroom on time, and sleep with one eye open on a short, hard, plastic bed.

I know, because with William it was my job- I became good at it. Now I have to turn that over and switch places.

I must step back from it all and wait to hear what happened.  If any woman understands that, I imagine it is Sarah, Abraham’s wife. She is one complicated and amazing woman- an ideal character for an amazing play. However, in one of the greatest scenes, our Best Supporting Actress remains silent and unseen. Many great jokes, sermons and commentaries surround one of the most profound tests ever given to parents who serve God.

I have read this slowly, picturing the scene over and over. Curtain, please!

Some time later God tested Abraham. He said to him, “Abraham!”“Here I am,” he replied. Then God said, “Take your son, your only son, whom you love—Isaac—and go to the region of Moriah. Sacrifice him there as a burnt offering on a mountain I will show you.” Early the next morning Abraham got up and loaded his donkey. He took with him two of his servants and his son Isaac. When he had cut enough wood for the burnt offering, he set out for the place God had told him about....When they reached the place God had told him about, Abraham built an altar there and arranged the wood on it. He bound his son Isaac and laid him on the altar, on top of the wood. 10 Then he reached out his hand and took the knife to slay his son. 11 But the angel of the Lord called out to him from heaven, “Abraham! Abraham!”“Here I am,” he replied.12 “Do not lay a hand on the boy,” he said. “Do not do anything to him. Now I know that you fear God, because you have not withheld from me your son, your only son.”…


15 The angel of the Lord called to Abraham from heaven a second time 16 and said, “I swear by myself, declares the Lord, that because you have done this and have not withheld your son, your only son, 17 I will surely bless you and make your descendants as numerous as the stars in the sky and as the sand on the seashore. Your descendants will take possession of the cities of their enemies, 18 and through your offspring[b] all nations on earth will be blessed,[c] because you have obeyed me.”


Let’s go off-stage. SURELY Abraham didn’t tell Sarah…right? If she had chosen to wait in obedience at home without protest I imagine it would have warranted a verse. Imagine that homecoming dinner table conversation. No marriage conference can handle that communication lapse. (Shudder) No WONDER Abraham went to Beersheba instead of heading home.19 Then Abraham returned to his servants, and they set off together for Beersheba. And Abraham stayed in Beersheba. See? The Bible is full of humor.

When Sarah finally heard what happened, knowing God had been faithful, I imagine Sarah clung to her Son of Promise. If she had sent her husband and her son away with provisions for six days knowing that Isaac may not return, I imagine she wrestled with The Difficult Things.

If God takes my son, is God still enough? If I am stripped bare from what God promised in this life, can I wait until Eternity to claim them without distrusting and becoming bitter? What if I fail God’s test for me?

Can I truly savor every moment I had with him and let that be enough? Why did God ask for my son?  How can I stop from wanting to control everything and watch him every moment?

I apologize to those who hate rhetorical questions. To me, these are NOT rhetorical questions. They were my constant companions and will continue to be until Jonathan is healed from cancer, one way or another.

It would be ideal to have Sarah’s example to follow, but the bible leaves it to the imagination. Dad gummit. I suppose it is for the best. Sarah isn’t the star. Abraham and Isaac aren’t the stars either. GOD is the star and this is HIS story of a sacrifice redeemed for something beyond comprehension.

That’s the point, after all. We must make Christ the star, no matter what cross we bear and what we sacrifice to receive what God has for us.

I will send my husband and my son up to the hospital over and over for a year. We will sacrifice each time- his school year with amazing teachers. Play-dates, vacations, leaving the house, nights together… but we gain promises and rewards far beyond what we see and can comprehend. Although our sacrifice and the way God will provide is very different, our God is unchanging. We can trust him, even when it knocks us flat, because God sacrificed his Son too.

Have faith.

What’s Happening A Week Before Chemo

Happy New Year! Most of us greeted 2018 with great joy, simply because 2017 is over. I can agree with that sentiment. Hooray to 2018! Except that many of my friends are mothers who are in the trenches of Strep, Flu, Stomach Viruses, Weird Rashes, Eczema, and travel plans gone awry. I’m friends with a lot of sickos, as it turns out. Thus, 2018 will be the Year of the Long Distance Relationship. As the primary care giver to a immune-compromised child and a newborn, I am living the life of Rapunzel. Therefore, most of my contact and communication with friends and family will be through technology. Be my pen-pal, won’t you?

We made it to 2018, which means three months of Cancer Part 2 are over. This was our month to ‘rest and recover’. Would every female who just performed the Great Christmas Show please join me in laughing?  Thank you. You’re so kind. Honestly, we are exhausted and struggling. It is a blessing and curse knowing what is coming next week.

As radiation finished and we carried Jonathan out with great elation, we were handed paperwork with a side effect warning. You know, the old familiar “What To Expect When Your 6 Year Old Completes Radiation at Christmas” chestnut. Less welcome than a re-gifted fruitcake, I assure you.

Christmas was STUPENDOUS. Not ONE of his favorite gifts came from his parents, by the way. Every gift that made the Top 10 was from one of YOU. He played with great elation for hours, which made them my favorite gifts as well.  You tried to give us a wonderful Christmas and y’all nailed it. Grandparents arrived Christmas morning. The kids were held, played with, adored and spoiled. Then we crashed, like everyone does. The tree was put away, the leftovers were eaten and we settled in. School and doctor routines were lost and the children went haywire. We stayed inside to avoid the rampant illnesses, taking turns attending church and sending the men out for groceries. We settled in to brace ourselves for 2018.

You asked, so I won’t sugarcoat it. 2018 is a lot like 2017…and 2015 and 2014. We are in the weeds. The following details are NOT to receive pity or suggestions. They are so you know how to pray for us.

The side effects are here in force. Jonathan realized everyone’s hair grew back and asked if Daddy would keep it shaved until his grew back too. He speaks less, runs less, and generally conserves energy. He is tremendously emotional and cries easily.  He grew increasingly lethargic and is now resting and sleeping every afternoon.


He has not regained weight despite our very best efforts and help from nutritionists and dietitians. He has the diet of a lineman paired with a hormonal teenage girl on the verge of a break-up. He is 47 pounds, up from 45, so he is constantly cold. He plays and curls up next to the space heater often. He can count his ribs and is sad that ‘his muscles are gone’. The amount of protein shakes, butter, and high-calorie foods consumed in this house is impressive. We even added carrots and green beans to the edible veggies list! He is also keeping everything in and staying hydrated.  He had his renal function blood test yesterday. His ability to overcome sensory discomfort and the stress of injections and blood draws has improved tremendously. We have visuals that show every part of the procedure to help him understand what is coming. It doesn’t hurt that the nurses and Child Life Specialists are attractive, young ladies who love a boy in a newsie cap and tie.

While Jonathan is sleeping, NO ONE else can because of William. Sleep problems have plagued us for three years, despite specialists, sleep studies, behavioral therapies and every ‘solution’ under the sun. We are taking shifts so that each adult can get  a minimum of 4 hours of sleep each, which is usually all we get before he requires the sensory input of his swing or trampoline to keep him from banging against doors and walls.  He averages 5 hours a night, usually waking by 2-3 am.  He still looks cute in the morning. I…do not. Gather your college all-nighter memories while ye may.


William is also regressing and attention seeking, typical of a youngest-turned-middle-child. However, he is showing signs of becoming a great big brother. He gets wipes and tries to help with diaper changes (this has potential!), tries to push her swing (yikes!), and cares for his baby doll. Much like mine, his baby only wants to eat and sleep right now.

Elizabeth Joy IS a joy. My goodness, she is a blessing. Jonathan and William’s first years were full of medical issues, crying and colic, eating issues, and a crash course in survival. Comparatively, she is an incredibly easy baby aside for her gift for diaper-filling and flatulence. You can imagine how the boys LOVE the toots. I’m enjoying it while I can. Her personality thus far makes me anticipate a passionate redhead that will keep us all on our toes.


Here I sit, looking at the snow which caused school cancellations. William is dancing to music, Elizabeth is sleeping in her swing under a handmade blanket and Jonathan is asleep on the couch. We are at rest, knowing what is coming will require resolve.

Here is to the start of 2018. Rest and recover soon, my beloved sickos.

Chemotherapy and Other Plans

The time has come to give you what you asked for… answers as to what is next for Jonathan an our family. Our battle against brain cancer has been successful thus far; he survived the brain bleed, the surgery extracted the entire tumor with perfect execution, and radiation was done with the lowest and least harmful amounts. Now that pinpointed attack is complete, it is time for chemotherapy to destroy anything harmful left throughout the body.

If all this worked, why chemotherapy? It is like getting a virus in a computer program. You can eradicate the virus from the program it arrived in  (like radiation) but a full system shut down and restart is best, which chemotherapy will do. Chemotherapy is a full body endeavor, killing off any potential cancer cells.

We will have 9 rounds of chemo, each lasting between 4 and 6 weeks each. The math is not precise but treatment will last about a year.

In January, we will have an auditory test, a renal test, and an MRI. A visit to audiology will be done every six weeks as a precaution, as hearing loss can occur from the medication CISplatin.  A renal test that takes several blood draws over 4 hours will occur six times to make sure the kidneys aren’t negatively impacted.

First, Cycle A: (6 weeks each)  On January 11 we will begin Day 1 of chemotherapy, which will last overnight. An enormous amount of IV fluid will be flushed through Jonathan after chemotherapy to protect his little body. He will have three different medications, (Lomustine, Vincristine and Cisplatin) each a week apart on Day 1, 8, and 15. Then Jonathan will have three weeks for his health and cell counts to decline and then rise. When he counts decline he will be weak and unable to fight off even slight illnesses. It is VITAL that he does not get ill at this time. He will receive medications and blood transfusions if necessary to help him recover.

Then Cycle B:(4 Weeks each)  Day 1-2: Cyclophosphamide and MESNA. Days 1 and 8, Vincristine. Then we wait for two weeks for the counts to drop and then raise.

We will give you more details as we can.

Tell Me Something Good…

Jonathan is not getting sick anymore! He is eating and playing again, although he is easily fatigued and quite emotional. He is the only one sleeping through the night at this point, but he IS sleeping!

He has a gift wrapped and waiting for each chemo dose, thanks to all of your gifts! His grandparents are also booked for flights to help us thanks to your donations. Thanks to your gifts we have ABOVE AND BEYOND what is needed to cover tickets for the year!!!! We can’t thank you enough. When we have more specific needs, we will ask for help. We promise.

Thank you for loving our family. It’s going to be another long year but we will come out swinging. We’re Team Erkkila. It’s what we do, regardless of how plans change.




Our Christmas 2017 Letter

William here, wishing all of you a Merry Christmas! Mom and Dad are forgetting a lot right now, like getting Christmas cards out, so I am taking over.


First, it was a big year for me. Around Christmas last year my leg muscles fully recovered from leukemia and I started walking well. Everyone was overjoyed. I started running a month later. Coincidentally, my name changed to “William-get-back-here”; “William-Wait!” for short.  I liked living in Kansas! We got to see my great-grandparents at least every month, I made lots of friends, and loved therapy and school. My favorite place to run to was preschool. My teachers taught me colors, shapes, new words and my nickname “Too Cute”. I also hold the record for Loudest Snacktime Burp and Worst Pull-Ups In 29 Years of Teaching.

Over the summer we moved from Leavenworth, Kansas to Maryland but my preschool here is also excellent. My favorite things are riding the big yellow bus, dance parties, and snack time. I have a class of peers and students who receive speech and therapies, so we have lots of helpers. They are the best in the county and hold me to a high standard. For example, I take a walk or wagon ride almost daily to wave at the adoring public. I am even called “The Mayor”. I live to serve. At least my independence and strong will are appreciated at school.

I have had a few Emergency Room visits and finally moved into the Survivor’s Center of  Johns Hopkins Pediactric Oncology. Everything was going well… until my older brother decided to get competitive. On September 21 he was rushed to the hospital where they found a brain tumor that needed surgery. Dad’s deployment was cut short and he was home before surgery. After that I got to see Dad, my grandparents and lots of friends. Jonathan completed 29 radiation treatments over three months.

He lost his hair and got very sick; I remember those days. We’re fortunate though; how many brothers can understand what it is like to experience cancer and to be the brother of a cancer survivor? It’s a pretty special bond…or will be when he starts sharing dessert.

Not to be rude, but during this year Mom gained a lot of weight around the middle. I kept looking up and seeing a big ball, like the Solar Eclipse this August. She started walking like a penguin too. It made it a lot harder for her to chase me, which I used to my fullest advantage. It turns out that Jonathan was right when he said we would have a baby sister. He named her Elizabeth Joy and even told Mom “two more days” before she went into labor on November 20. She was born at 3:59am on November 21, just in time for Dad to get Jonathan to radiation at the Proton Center at 8:00am.

She is okay, but I am clearly having to fight for attention. Hopefully  we kids can gang up on the parents with our superior numbers.

As usual, the next year looks full of the unexpected. Jonathan will have school at home, which is really sad for us. His teachers are also the best in the county and have made lots of videos and cards for him. He starts chemotherapy next month, which should go most of the year. Dad will be traveling again and hopefully our new roommate will learn to sleep more.

How do we do it? Well, we pray ALL the time. I like shouting, “AMEN!” at the end.  I’ll tell you, there is a lot of crying and yelling.

Christmas 2017

We aren’t exactly focused all the time…

christmas 2017 1


Things are hard, but Mom and Dad say, “You are our children. God gave you to us, made in his image. We do what it takes.”

joshkaitelizabeth That is how we handle Down’s Syndrome, Autism, cancer and all the rest. We also have dance parties every day, and no one stays sad when watching my moves. The other secret is we have lots of help and encouragement from friends and family. As my friend Daniel Tiger from Daniel Tiger’s Neighborhood sings, “When something is bad, turn it around and find something good”. The good coming to overpower the bad is what Christmas is about, after all. If you ask me, we’ve got it pretty good.

Until 2018,  “Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12


William  (and Josh, Kaitlin, Jonathan and Elizabeth)

Put On Your Armor and Don’t Forget The Pearls

Ms. Cheryl’s smile radiated down the church hallway as her arms opened wide to receive me and peek at two week old Elizabeth. Elizabeth was wrapped in an intricate pearl-colored blanket, created with patience and love. “I knew it would be a while before she could wear pearls, so I knew a pearl blanket was perfect until then,” she said, glowing. Only a week later a small black package arrived from two military wives and ‘trench sisters’; a tiny string of pearls.

Why give pearls to a newborn girl, you ask?  Jesus received gold, frankincense and myrrh, so never judge a baby registry. The meaning behind the gift is as important as the gift itself.

Last night a dear heart-sister texted me the following: December 15 is Wear Your Pearls Day and National Underdog Day. I sense a blog. I blinked and reread the message as Elizabeth and I woke up for a late night feeding.  How could I disappoint my friend and mentor who has insisted for nearly a decade that I write my wild swirl of thoughts down? ( Her blog  inspires me daily. Check it out!)

On December 15, 2006 I stood near my husband as he swore an oath and was commissioned into military service. Eleven years wedded to military service bestows infinite lessons. Proper outfitting and armor are essential, regardless of the battle being fought.

Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God. Ephesians 6: 13-18


Along with this armor, I add pearls. I defer to another wife who saw her husband through incredible trials, Lady Sarah Churchill.


A string of pearls is a proclamation of overcome trials and success.  Despite the natural defenses and shell, parasites and sand creep in. Rather than be rid of the irritant,  a liquid called ‘nacre’ slowly encompasses the unwelcome guest. Cracking open the shell will reveal a pearl- a declaration that an intrusive irritant was transformed. 

Adorning oneself with a representation of trial and difficulty now overcome and transformed and valuable is exquisite.

“It’s victory around your neck”- Christina Fishburne

I dare say pearls represent something almost holy. Mention of the “pearly gates” is biblical. “And the twelve gates were twelve pearls, with each gate consisting of a single pearl. The main street of the city was pure gold, as pure as transparent glass.” Revelation 21:21

Jesus Himself described the value of the Heaven with pearls. Consider The “Pearl of Great Price”, Jesus’ parable from Matthew 13:46.   Again, the kingdom of heaven is like a merchant in search of fine pearls. When he found one very precious pearl, he went away and sold all he had and bought it.

Holiness, righteousness and serving the Almighty God is the greatest purpose. The point of life or the Christian pursuit is NOT reaching Heaven but the pursuit of Jesus, who is seated there. If we choose to encapsulate our irritants and trials with the Living Water as an oyster surrounds parasites with nacre, we do well. We create pearls.

Presently, my family’s shell is full of “parasites”; our second battle with childhood cancer, a newborn, distance from family, deployments, threat of illness, disability, never seeing a pre-baby waistline again… it is fairly daunting.

So we spin and pour out. We cover, we fight, we face the invaders head-long and in fury. I collect these Unwelcome Things and watch them gain luster and value. The story of our lives strings these pearls along in hopes that others would not see trials hanging heavy around my neck, but victory shining brightly. God allowed the difficulties in. I wish to hand him back pearls, however imperfect.

As a child I loved to open the velvety black box that contained my mother’s exquisite strands of pearls– a valued gift from my father. During their last move, the pearls went missing. The entire drawer to the dresser was missing, in fact. I don’t know how either; we are gifted people.  Largely pregnant with William, I broke down every box in the sweltering Texas heat that July in search of Momma’s pearls until I emerged sweaty and successful. When she arrived home from work I joyously presented the case to her. “You’ve found your inheritance!” she exclaimed, running her hands over each perfect pearl. My inheritance indeed, Momma. You trained me up in wisdom, knowledge of the Lord, red lipstick and pearls.

One day I will pass the treasures of my life, along with my pearls, to Elizabeth. She was literally born into the adversity of cancer… and all else her brothers bring.


May she wear the Full Armor of God…and the Pearls of Victory around her neck.

Ringing in Hope



intransitive verb
1 : to proceed in a direct line from or toward a center
2 : to send out rays : shine brightly
3 a : to issue in or as if in rays

My sister Taylor and I proceeded in a direct line toward a center this morning, bags and baby in tow. Red brake lights stood in line through construction on the interstate, oblivious and uncaring that I needed to be in downtown Baltimore for a celebration.

Twenty nine. Twenty nine days Jonathan was been driven to the center and waited with Legos and Netflix on an empty stomach. Twenty nine times an IV has twisted onto the plastic buried in his chest. Sedated and still on a bed, a beam of protons radiated through his skin, bone and tissues both killing and saving. Twenty nine times he was carried to the car, sometimes screaming from disorientation while other times happy and hungry. It took two months to accomplish these tasks that carried into afternoon and evening. These saving treatments stole time, hair, food, sleep, and patience. Radiation drew out hugs, strength and support. Also a LOT of Jonathan’s favorite red and black plaid.


We receive radiation while also radiating. As a family we all play our roles, steadfast and flexible but proceeding toward a center. We move forward toward Treatment, Remission, Cured.It is our privilege and duty to shine brightly. It is our job to befriend and encourage others in the waiting rooms, to bless and be kind to the nurses, to tip and thank the valets standing in poor weather, and to be the kind of people that make it worthwhile to come to work.

Today Jonathan shone brightly. He sent out rays, and not just from the light’s glare on his bare scalp. With great excitement he took his turn ringing his own victory bell. As the sand in 2017’s hourglass falls to the bottom, we Ring in Hope.


We ring bells to celebrate and celebrate you have. Thank you all for rejoicing with us as the first three months of this fight comes to a close.