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.

 

 

 

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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.

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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…

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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

Love,

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 https://heavennotharvard.com  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

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

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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.

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

Ringing in Hope

 

Radiate:

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.

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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.

Lights of Christmas-Passed

Cancer-free. Remission. Completed treatment.

Memories, pictures, blog posts, a stack of hospital bills, several white scars and a bald head were the proof that remained. William’s leukemia was gone.

There was very little time to celebrate. We had only 48 hours to say goodbye to our friends and home of nearly three years.  Nine days after the plastic tubing was removed from above William’s heart, the moving van took all we owned and drove it away to a chance to begin again.

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I couldn’t fully explain what we had just been through to the new friends and neighbors but they were wonderful and embraced us. The new pre-school was wonderful and slowly we tried our hand at “Normal”. I went outside in the summer and warm fall weather as much as possible after being in one artificially lit room for 6 months. I longed to feel sunlight and to see William rediscover grass and dirt. I pulled curtains back to allow light in.

I made a friend there who became my right arm and my Person. It turned darker earlier and the toddlers became very ill. Snow locked us inside for a month. I learned that significant trauma from her past and the demon called Anxiety caused her to fight a valiant fight. Most days she kicked it in the teeth. She named it The Dark Place. It sounded like a place I had seen in a dream or in pictures–familiar but far off. We fought together and I tried to shine a light for both of us.

Then night came. My comfortable bed inside a darkened room without the blue glowing lights and noise from pumps was a perfect place to rest. For some reason, I’d wake at 9pm. Then 11:00. Then 2:00. Then 4:00.  I realized William was waking as well. These were the times for pump changes and blood draws. I’d wake up anxious and exhausted, which felt familiar and welcoming somehow.  Snow, Strep throat, appointments, blood draws, my husband’s absence for work, and the usual struggles with toddlers and disabilities mounted. I tried to fight through it, as effectively as a $1 flashlight compared to the sun. This supposed to be the easier time we had waited for and so much was going right.

Then I had a doctor check my counts and levels. My stress hormones and chemicals were pumping at a trauma or deployment induced level. A time of medication and the help of friends and wise, older women brought me back. My body and my heart healed.  The year was hard, but I remember it with such joy and blessings as well. The most beautiful time was also the hardest– Christmas.  Looking back now, that time of healing and grappling with God after the trauma of cancer care-giving was as valuable as the time during treatment.

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Light still shines when other light is around, but light surrounded by darkness seems to shine brighter. Lights in the darkness become beacons. 

It is Christmas time again. Strands of lights are everywhere, visible and ready. At night the lights receive power and joined together they shine, illuminating the night. This is what is happening in our home as well. The Christmas tree’s light shines a peaceful glow– enough that I can safely walk the floor with a baby in a darkened room. The bright, joyful moments are here, strung together and held up so that we may be filled with delight and awe.

This is the key to Christmas. Christmas is FULL of Darkness. Tidings of Peace, Great Joy, childlike joy, and all things bright are set against a backdrop of with stress, planning, travel, illness, death, loneliness, strife– and that is the point of Christmas. 

On the day of Christ’s birth, the brightest star ever seen on Earth pointed the way toward God With Us. God had been silent for 400 years, his people were occupied and mistreated by Romans, Herod was a tyrant and it was tax season. The world was dark when the Light came.

The problem comes when MANY lights are shining. When the joys of health, financial stability, beautiful families, acclaim, likes and followers, honors, and promotions are abundant, these bright points can distract. They light up life and make it less necessary to keep eyes fixed on the one LIGHT; God in his righteousness, goodness and faithful provision. When Darkness comes, the Light shines and demands our attention.

The HARD things that make us despair and weep make us long for a Savior. This was precisely the case in Bethlehem when a star pointed to the Light of the World that came to testify to the Truth.

Don’t be afraid of the Dark. We all face it. Find the Light and be a light to others that points to God. Don’t just seek and find Him– walk with Him and keep your eyes on Him. That is our secret to Christmas with Cancer. The Light shines brighter and much more clearly.

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The 4:12 Paradox

It is 4:12 am and I sit on the thick floor rug clinging to my final shred of consciousness.  Chairs and comfortable seating surround me and yet I am relegated to sit beneath the desk so my computer can charge. Somehow I forgot to plug it in before the evening festivities of dishes, preparing a school lunch, clearing the kitchen counter for the 4,323 time this weekend, and changing diapers.

It all sat impatiently so we could read passages about Advent and ‘light’ the battery operated candle in the wreath…because fire-lit candles would usher in the Fire Department as well as Baby Jesus.

I sit in a paradox. I live in a state of abundant depletion.  One day has ended and another began without a break. There isn’t enough for the next day, and yet there was yesterday and the day before.

I have been awake every hour for 24 hours, since 5:51 am yesterday. A ‘Supermoon” hangs in the dark sky, which has changed only slightly since 1:43, 2:56, and 3:51.  I made the Unpardonable Gastric Nursing Mistake of eating something healthy while nursing a newborn.   I say healthy, vegetable filled soup… my daughter cries Murder Most Foul. Well, diapers, anyway. Drinking extra water and eating healthy has caused an all-nighter where last night held a three hour stretch of sleep.With each hourly feeding and the 8 diaper changes tonight brought, she stares at me knowing what I have done to her.

Good In, Good Out they say. Lies, Friends. Doesn’t she KNOW that making the good choices is supposed to bring good results? Isn’t this the formula for parenting?  (Now we shall break for uproarious laughter at such ignorance.)

My husband and I asked God for children who would live for His glory and spread a testimony. We prayed to truly KNOW the Father and live submitting to the Lord. We wanted to live growing in the Word and to be set apart. One would imagine a beautiful Christmas card with smiles, a Bible Study in a comfortable home, regular date nights as prescribed by every marriage expert, and heart-connecting discipline. God said, “Nope.”

God said yes to children with disabilities, struggles and delays. He said yes to BOTH sons having cancer. God said yes to proving his Presence and powerful proof of his provision and goodness. Our normal is another’s Worst Case Scenario– and we consider ourselves abundantly favored. Great adventures and decisive battles are noted for hardship. It brings out the best and the Holy in us.

We may want to be molded into Christlike form… gently. That isn’t how the Most Holy and Powerful God works. Christ- God incarnate and Most Beloved– was a Suffering Servant who obeyed even to death on a Cross. To become like Him we will also be crushed and must sacrifice our will for a greater one.

So again I sit, now having been interrupted twice to change diapers. Mothering three children while balancing a 5 year old in total rebellion and a 6 year old in radiation is crushing me- and yet we have more than we need both tangibly and spiritually. Our lives don’t make sense. How can we expect our faith to make sense to those watching?

We praise in the paradox. We die to sin so we may live. We turn right to go left, as Lightning McQueen says in Cars. We break down together so our marriage may be whole. I eat carbs and cookies rather than broccoli for the good of my daughter’s tummy and sleep habits. It doesn’t make sense.  After all, Faith isn’t about making sense.

 

Book: River, you don’t fix the Bible.
River: It’s broken. It doesn’t make sense.
Book: It’s not about making sense. It’s about believing in something. And letting that belief be real enough to change your life. It’s about faith. You don’t fix faith, River. It fixes you.

-Firefly, Jaynestown

 

The overwhelmed feeling like I am drowning is so familiar that it is almost comforting. Perhaps that is because I was raised in church that baptizes by full immersion. My baptism was one of the church’s fastest because Pastor Long’s fishing waders sprung a leak. Really.

On paper, our family experience is… abundant. 6 deployments and 9 moves in 11 years and 7 years bringing Autism, Down’s Syndrome, two forms of cancer and a newborn. As resilient and capable as we are, we have learned that we absolutely need help. A LOT of it.

This was 5 am. Everyone is sleeping in two hour spurts…just not the same two hour spurts.

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I’m finally humbled enough to say more than “Yes, THANK YOU!” to the abundant and amazing generosity y’all have shown us. I am thankful to the point of hormonal tears daily.  After many, many requests, I have made a list of tangible ways you can help us meet our most urgent needs.

We are called to bear one another’s burdens and to love one another. I do not want to prevent someone from being a blessing or using a gift because of my pride. Dang it. This humility thing is hard.

First, an amazing Aggie sister who also has an inspirational story has forced me into creating a fundraising page.  As a mother of 5 displaced in a trailer until FEMA can evaluate the damage Harvey caused on their Houston home-and rocking it despite sick kids- she can absolutely kick my rear. If you want a Texan woman to do something, tell her she can’t. She’ll prove you wrong. So, here is the page she made.

If you want to donate, you can do so here:

https://www.youcaring.com/joshandkaitlinerkkila-1031168

 

FLIGHTS: The funds will go toward plane tickets for family members to fly from Texas each month of inpatient chemotherapy. Newborns and siblings can’t stay overnight in a hospital, after all. Family members are more helpful that nurses or respite care. Jonathan is diagnosed as on the autism spectrum, so new transitions and new sensory issues such as illness and pain we can expect as side effects are daunting.

 

Funds for cleanings and cleaning offers (sans kids!) Germs and illnesses are very serious threats. Jonathan will have a weakened immune system during treatment, so even mild sniffles can be serious. When William caught C Diff during treatment he became so ill that I feared he would not live. Every day when William gets home from school he is immediately showered and his clothes are changed and washed. Pre-school is a disease magnet after all. The cleaners, Clorox wipes, etc. are constant companions. Try as I might, I cannot keep up with daily deep-cleaning with Wild-Man Will, nursing and Jonathan being ill. I admit, I am not Pintrest worthy.

MEALS. Food, glorious food. Jonathan consistently becomes exhausted and ill around 4-5pm. Making dinner isn’t easy. The Mothers of Preschoolers set up a Meal Baby train that has options to sign up for a meal or to send a gift card. This has been SO helpful.

**If you want to be added to the list that can view and sign up for meals, let me know and I will add your e-mail. In the near future, months beyond December will be added.**

I can’t grocery shop and expose Jonathan to potential illnesses to get groceries, so we use pick-up and deliveries in the area. Wegnman’s and Amazon are the two services we use.

I am so thankful for the packages and gifts. The joy you bring to Jonathan delights me to see. Please understand that I am PAINED to ask for help, but I have learned that God provides mightily through his people. You have been the hands and feet of Christ to us. Thank you for loving us and caring for us. We love y’all.