Preparation, Prayer and Purell

This week we were informed that Jonathan does NOT have the P 53 mutation that would cause hereditary pediatric cancers and would cause radiation to put cancer throughout his body.  A dance party ensued until Jonathan told me my moves were embarrassing.

Needing an extra day to prepare, the radiology team moved the start date to Wednesday, Nov 1. Jonathan’s last day of school was Friday and what a GLORIOUS day it was! His teaching team declared it “Jonathan Day”! His classmates wore ties, button down shirts and/or flannel and he got to share his Star Student poster. He came home with a bag of goodies and an enormous smile. I can’t rave about this school enough. They will make sure he continues with lessons during treatment with the home-hospital plan. He is academically ready for first grade, but the social aspects were crucial. Being separated form class for a year is a major step backward that requires continued trust in God to bridge.

teamjonathan

OUR SPECIFIC PRAYER REQUESTS:

  1. Last night a storm rolled in and I felt those first pangs that remind a mother she is in the 4 week window before birth. Her due date is Nov. 25. Nothing to call the hospital over, but enough to lean up against the walls and start making up jibberish cuss words. PRAY Elizabeth Joy doesn’t join us early. A NICU stay would be a serious challenge. 

2. PRAY JONATHAN STAYS HEALTHY- NO COLDS or RSV especially. Radiation requires sedation for young, wiggly kids so the radiation can hit precise locations.  Catching a cold means delaying sedation and treatment ONE WEEK. This can potentially move our end dates back a month.

3. Pray for Jonathan’s peace and bravery as we begin daily treatments. We will have two new sensory obstacles: putting numbing cream and bandages on over his port and wearing a hospital mask as protection. I am confident he can adjust, but it will take time. He will be exhausted and a bit disoriented as we start and his immune system wavers.

4. Pray for our faith to be strengthened and for us to choose joy. We will be celebrating William’s birthday, tackling Daylight Savings changes, preparing for a baby and doing all the usual things families do in the midst of all the new trials. We must choose thankfulness and to celebration.

5. Pray for my adjustment to living in an isolated bubble. Having a new baby can be lonely for mothers, but not being able to take Jonathan or Elizabeth out during winter and treatment will be challenging for my very extroverted, people-loving self.

We are VERY thankful for the encouragement, letters and packages. Y’all are bringing great joy to Jonathan!

IMG_3578

How does one prepare for cancer treatment? Well… 

It is ESSENTIAL that Jonathan stay as healthy as possible. As he receives treatments, his immune system will decline to nearly zero. Things a typical body can fight will be very dangerous. During this cold, flu, RSV, HFM, etc. seasons, it is especially dangerous. During chemotherapy, William struggled with extra illnesses caught when immunity was low. In March I was scared he wouldn’t survive.

Precautions:

ROOM CHANGES AND DIY PROJECTS: Jonathan’s room will now be the lower level. We are taking up the carpet and putting in easy-to-clean flooring for germs and to easily clean “illness” grossness that can come with treatment. Mopping is easier than carpet cleaning.  His bed and toys will relocate and William will get a room to himself.

CLEANING: When family members return from school, work or errands, they will immediately shower/change clothes/wash hands. Toys, especially Legos, will be washed often. Even shoes, backpacks, stuffed animals, etc. At each door we have Clorox wipes, Purel and masks. Lysol disinfectants are added to the laundry. Cars will be disinfected and as well.

THERAPY: Therapies are cancelled until further notice for both boys. William and I spend 11-3 at therapy each Wednesday. There is NO prayer of going and not getting sick from the other great kids. All the therapists have already been sick. The logistics of therapy and treatments require an extra person and I’d have a new baby in a waiting room for 4 hours. “It’s just allergies” is a lie from the pit of Hell, and even the most diligent mother can have a kid go from perfectly fine to a fever in an hour. As much as physical therapy, occupational therapy and speech therapy help, William will still receive them at school.

LOGISTICS: If it can be shipped to the house, it will be. I can’t run to the grocery store or to Target with the baby anymore; I will be home with Jonathan and Elizabeth after treatments. When another adult is here to cover down I can leave of course, but thank goodness for grocery pick-up and delivery. (All the nursing mothers said, “Amen”.) The meals have been a HUGE help– thank you ladies!

WILL THESE WORK 100%?  Probably not. However, with a new baby and Jonathan’s compromised immune system, it is essential that we live in a bubble.

For now, we are doing lots of house projects, cleaning, and preparing Jonathan. We are bracing for impact but feeling encouraged and thankful for all the support.

family party

I will write a report on Wednesday night after our first treatment. Thank y’all for everything.

IMG_3723

Advertisements

Scrubbing, Sorrow and Simplicity

Nineteen and disappointed, I sprawled on a squeaky metal bunk at my beloved childhood camp. I had dreamed of being a summer counselor for years. When I arrived with a trunk of t shirts and and unbridled passion, I discovered I was selected not as a counselor, but as a “Kitchie”- the kitchen staff members who served food and washed dishes ALL DAY. Thankfully, I would not be cooking in this role; this would have sent a camp toward the porcelain throne in prayer. On the first day we were given thin books by our leader. In this first quiet moment with only the box fan humming in the Missouri summer heat, I read:

“Lord of all pots and pans and things make me a saint by getting meals and washing up the plates!”- The Practice of the Presence of God, by Brother Lawrence

That summer was one of my favorites. Sometimes God just asks me to do the dishes.

I now stand in my kitchen having unloaded dishes and preparing to wash more. It is an unending chore in a home with children. I can assure you I have NOT mastered the quiet tranquility expressed:

“The time of business does not with me differ from the time of prayer, and in the noise and clatter of my kitchen, while several persons are at the same time calling for different things, I possess God in as great tranquility as if I were upon my knees at the blessed sacrament.” 

Raising small children into mighty men is a loud and demanding endeavor; the Lord’s presence must be brought into the daily tasks rather if I expect more than two minutes of quiet contemplation before His Throne. I currently can’t visit my bathroom throne without an audience or interruption. Washing plates is NOT a sacrament and disposable plates are not sinful– it is in the serving and meeting God in the path given that the beauty is found.

During my fifth month of living in a hospital room helping William through leukemia, a friend with excellent intentions said, “Let’s find the positives. At least you didn’t have to cook or do dishes for five months!”  At the moment, those words cut deeply. I did plenty of dishes and cleaning during my 48 breaks of reprieve, but the Beautiful Mundane had been taken from me. Granted, cooking and dishes are two chores I despise, however having the freedom and choice taken was painful. Instead I served by cleaning soiled sheets, listening to the same songs repeatedly and untangling plastic tubing from a beeping pump in the Darkness of Night and Cancer.

Like fine china and plastic toddler cups, they have different purposes but are equally valuable in their own time.

There are hundreds of tasks to do before I take William to his three hours of therapy. I could choose any of them, but for now I wash the dishes. It is necessary and mundane, quieting the soul amid the clanking and metallic clamor.

Suffering is as constant as scrubbing the crusted brown bits off the bottom of a skillet. It must be dealt with and fought. It must also sit, soak and wait.

For the last few nights my husband and I have just held hands in the dark and suffered together. I am heartbroken. I am furious. The joys of childhood are being redirected, again. AGAIN. BOTH of my sons.

I can’t lift or carry my child because I carry the weight of another one. Going to war for a Worthy Cause doesn’t exempt the warrior from the Hell that comes with it. That is why The Savior of Heaven is necessary. 

In the raw moments when I don’t feel joy or the loving-kindness of God overwhelming the sorrow, I Trust and Obey Orders. The simple things done in obedience glorify the complicated, intricate God.  The Eternal Things, like dishes and Jesus remain. Sending a Human-Deity to die as an atonement is miraculous, but anything but simple.

Feasting on the Bread of Life requires dishes.

Lord of all the Pots and Pans and things, make me a saint by reheating meals graciously dropped off and when throwing away plastic plates.

Of Ports, Plans and Plot Twists

Yesterday was a day we had waited for impatiently and dreaded simultaneously. Jonathan would receive his radiation plan from the team at 9 am and then have surgery to place his port and have his lumbar test.

(What?!)

The ‘port’ is a piece of plastic less than an inch long that is inserted into the chest above the heart. The port is used to administer medications, retrieve blood draws; anything an IV would be used for. No more sticks! Yay! It is under the skin and NOT exposed unless needed, so the maintenance is MUCH easier than William’s line’s dressing changes, infection prevention, and inability to bathe.

The lumbar was like a spinal tap. The MRI showed nothing cancerous in his spine, but checking is required. BOTH of these hurt when one wakes from anesthesia, which isn’t easy for Jonathan anyway. Perhaps he has some redheaded genes after all. If the lumbar test shows cancer in the fluid, he needs high dose radiation. If not (PRAY HARD!) he can get a lower dosage, which means FAR FEWER side effects. Side effects include impaired cognition, growth, etc. You know, those scary things we’re used to facing.

He was cooperative, polite and very kind all morning. He charmed everyone with his newsboy cap and matters. I was quite proud to see him walk up with great eye contact and check himself in by name in a clear voice, patiently re-spelling our last name a few times. (Get used to it, Kid.) We took a 2 hour break to see the park and get some sun!

jon federal hill park

PLOT TWIST: The Johns Hopkins radiology-oncology team is superb. The adult waiting room was a sea of humanity, overflowing with about one hundred people. The pediatric floor was empty and the nurses were darling. The team informed us that there were TWO radiation options– Proton and Photon. Here is your science lesson for today. Middle school moms, this counts as double homework time, so the chocolate or cookie is earned.

Photon therapy is like x-ray radiation; it would be concentrated to areas of the brain and spine but would pass through, like x-rays through a wall. Some would pass through to other areas of the brain and organs like the heart and bowels. Protons- like the ones Mrs. Frizzle taught about– are the denser pieces of the atom. They basically reach a target and stop, like a toddler’s requested applesauce being hurled on a clean wall and falling to the freshly mopped floor.   The benefits are still in working theory, but the benefits are proving to be less damage to the brain that results in developmental delay and more protection to the organs. Thus, this treatment is largely encouraged for children. Considering Jonathan’s situation already, we want to give him his best advantage.

HOWEVER, Johns Hopkins won’t have photon radiation ready for another year. The two closest locations are CHOP (we can’t move and commute to Philadelphia) or…Maryland– which is about ten minutes in traffic from Johns Hopkins. Within twelve hours they had reached the Maryland team, checked with insurance and set up a consultation for today, in about 45 minutes. We will receive plan details, but we assume it will be similar.

Meanwhile, William and I have 4 appointments today as well. My bag is loaded with snacks like a Kindergarten Zoo Day chaperone.

Jonathan came out of surgery well. He cried off and on, refusing to eat and struggling with his throat from the aspirating tubing and the surgery, which runs a line through the jugular.  May we take a moment to marvel at medical advancement, please? THANK YOU.  He also had orange staining from the iodine that looked like an unfortunate self-tanning accident, which reminded me of my 20s. Trauma for all.

He fell asleep by 9pm and we relished the hours.  2:30am arrived with great misery. The next hour held the childhood suffering that parents dread. Suffice to say, pain and trying to understand what hard, foreign object was under the skin of his chest was a challenge. It took both of us to calm our disoriented, pained son. My husband put an identical covering and bandage on his own chest in the same area to help. After administering medication, showering him, changing clothes and reading books to calm him down, he fell asleep around 4 am.

post port

Trying to explain temporary pain for long-term benefit is difficult, but to a person in suffering it is Herculean. My inability to carry or hold my son due to my unborn daughter is difficult- the plight of most mothers. It helps to know that God fully understands how it feels to watch his Son suffer– but I can’t explain how this shreds the heart. Watching him rest peacefully just a few hours later feels like crossing a great finish line.  Hearing him whisper-sing “We are weak but He is strong” is salve to the soul.

Today he is bandaged, fed, and off to another hospital with his favorite stuffed animal, playlist of soothing songs and his father– the strongest man I know. I’m thankful to call him my husband. We are just shy of 11 years of marriage; he has battled wars for all of it, battled cancer alongside our sons for three of them, and fought over how close dirty socks land to the hamper for about 5 of them. He is leading our family to serve the Lord and follow Him. We are living as those who will be evaluated and judged for how we obey and believe. Eternity will outlast these years. Likewise, we believe that the reward promised and pleasing Christ is worth it.  Please continue to pray for us and for the souls of our sons.

More news coming soon.

With faith, hope and love.

elizabeth elliot

***Added update: Jon will have a sedated CT and radiology tests tomorrow morning to help the radiation team prepare. Tentatively– because EVERY plan has changed at least once so far– treatment will begin October 31. Scary indeed!

Jonathan’s Treatment Plan Q&A

“And now, the moment you’ve all been waiting for…”

PLEASE: Do NOT call /text us immediately. We are overwhelmed with calls from the hospital and by actual logistics to make this happen and can’t answer you right now. This is ALL our information right now. If you have a question that isn’t answered here, we don’t have the answer. NOW….

We had two meetings with genetics and oncology at Johns Hopkins, in which we outlined a TENTATIVE PLAN. There are still some variables that could change things. Keep in mind, ALL THIS can change in a moment.

This will be a Q&A format:

“What kind of tumor is it?”  There are 4 types of Medulloblastomas. Two have cool names; WNT and SHH (Sonic Hedgehog. Yes, really. From a fruit fly experiment.) Then Group 3 and 4 are mostly lumped together. Clearly, we will give them great names. Jonathan’s is Group 3-4.

 

“Is that the bad kind? I heard that has 30% survival rate! Should I freak out?” Thou shall not freak out. Jonathan is considered average-intermediate risk, not high risk. This is because he is over age 3, the entire tumor was removed and it is not in his spine.  Overall, survival rate is typically in the 80% range…if you like numbers.

nevertellmetheodds

Why genetics testing? Do you need to test the baby?  Having two sons with cancer raises red flags for hereditary disposition that can be tested for, although it is unlikely as William’s AML is Trisomy-21 related. IF Jonathan has this genetic syndrome, radiation WOULD NOT be helpful and would not happen, as it would raise the probability of more cancers. Instead another aggressive chemo regiment would become the new plan. Currently Elizabeth has NO genetic conditions that can be seen and there isn’t cause for concern at this time.

When will treatment start?

First, we need a port for medications and chemotherapy. This will allow for blood draws and monitoring as well. First we need: port installation surgery, a lumbar extraction (is there cancer in the spinal fluid-unlikely), physical and neurological exams, MRIs of the brain and spine, audiograms, and blood tests for organ functions. These will be for a baseline and tested repeatedly. This will take place between now and Halloween.

Radiation, if done, will begin on/before October 30. The process will take several hours/half a day. It will be 5 days a week, Mon-Fri for 7 weeks.

After a short rest period, we will start chemotherapy. Suggestions and alternatives are things I do NOT appreciate right now, even if you have great intentions-we have heard them all. Yes, we poison our kids to save them and we DO use the non-drug options already. I’ve heard it all, so kindly remain silent if you oppose our course of action.

health concerns

Chemotherapy dates and times are still rough, but will last about 8-10 months. The entire treatment will last about a year with two years of follow-up care, which is very familiar. Typically, there are 2 or 3 days inpatient following chemotherapy administration. As his immune system tanks he may get fevers and/or need a blood transfusion. This could mean additional hospitalizations, as it did with Will.

chemo dose

Can you be around radiation pregnant? Yes. His radiation will happen under sedation, so I won’t be present/close, but once in his body it is not toxic. However, other family members will take this duty to keep us safe and because I’ll be in labor within 6 weeks.

Is Jonathan okay? Nope. Not even a little. He cried and was very scared and sad to return to the hospital. He does NOT want to return and acted completely typically. Blood draws were a challenge and much of the daily frustrations to come will be eased by the port, but the adjustment will be a challenge with his sensory issues and verbal delay from Autism. He has shown great courage and says the best part of the hospital is getting presents and Lego sets– for which I lovingly blame y’all.

jon car

Can he comprehend what is happening? Yes. He knows his brain had a tumor and an illness, he needs medicine and will need to be in the hospital a lot. He can grasp treatment plans at a kid’s level. As for the rest, can anyone fully grasp it?

What do you need?  The meals, gift cards and groceries have been amazingly helpful, as have the Prime Pantry deliveries. THANK YOU. I can’t thank you enough.

The fact that in the next 6 weeks I will give birth and have the joys of post-pardum is… damaging my calm. I am in shock, overwhelmed, feeling okay and still laughing. Usually.

shock However, we feel well-supported. I am sure in the days to come I will need help picking William up from school, weekend help, or even basic housework help. Of course, the usual–someone to hold the baby so I can shower, etc., but we will also have family members in constantly. I’m not too proud to say Southwest points and vouchers are the perfect Christmas gift.

Yes, you can come visit. All of you. I don’t know when we will need it most or even when this will start, but I love y’all for wanting to pack and be here immediately.

There will be another update to answer more questions soon… including some of the more-ahem- interesting and notable questions.

 

We love you.

 

Sunday and Monday

 

SMonday: The strange twilight between the peace of Sunday and the rush of the week’s demands. The time of preparing for what lies ahead without being able to face it yet. Yes, “Sunday Night” is quite our home just now. We are post brain surgery and preliminary diagnosis, but will wait on news. The New Normal appears from nowhere, like water on the boys’ bathroom floor, but an inevitable tidal wave awaits. We have begun to try hours of the Old Normal Routines, like school and therapies, dishes and laundry, cuddles and bedtime stories, and laughing through the dark.
Sunday morning, Jonathan put on a tie and shoes, declaring it was time for church.  It was comfortably familiar, like walking down the hall of former school or singing a long-forgotten song. Seeing the Church felt like coming home.
The lesson was about David defeating the Philistines after killing Goliath, and God helping David and the army. Reciting the verse about God helping in times of trouble, Jonathan crawled from his seated spot on the colorfully carpeted floor to my lap. His head was obviously hurting a bit, but I noticed a little tear and a frowning lip. The instruction continued; God helps us when we are scared to do what is right, to tell the truth or even be brave at the doctor.
That is when my strong and tall 6 year old began to cry quietly. “I’m sad my brain hurts and is sick. I am sad about the doctor… I need help, ” he whispered.  He put his head  in my lap and took deep breaths. I stroked his back and neck gently in either side of his healing incision.
It was in that moment I realized Jonathan  knew he was going to face something difficult-and God helping didn’t necessarily mean banishment of pain or hardship.  I held my son and whispered Truth. Life is hard, so we need a Savior. We are broken, so we have to trust the Creator. Mommy and Daddy are here, but God is the only constant. When we are weak, He is strong. There are Big Hurts in life, and many don’t go away until Heaven, but darn it we will fight with all our strength until then.
More often than not, God delivers through fires, floods, giants and cancers rather than from. Crosses are heavy to carry. Trusting God doesn’t always mean victory as we see it.  My Jonathan knows full well that “God With Us” means he will get shots, he will wake up confused in his Batman underpants with new scars, he will hurt and above all, “When we are happy, thankful, sad or scared, we pray”.  He sat with his head next to my pregnant belly and softly cried for a moment. Then he stood and asked for his father, so we went to the sanctuary and both held him as we worshiped and suffered…and then he asked for grilled cheese and ice cream.
The following day Jonathan returned to school for two hours. I nervously sat in the back pretending to be invisible, as I plan to do on his first day of college.  Aside from moving gingerly and not rotating his neck, he acted like nothing had changed. I marveled a bit as he read, cut and glued, and quickly wrote his name and traced letters with ease. After years of struggle, I was almost surprised to see him do what I knew he eventually would.
His class is filled with outstanding professionals and darling 5-6 year olds. For two glorious hours,I seemed to be the only one feeling stuck between worlds. I brought him home and he quickly melted into a pile of exhaustion and Legos.  Monday, indeed.
Honestly, I am content in Sunday. I have  done a fair amount of crying in church. It’s the time I am exposed to God without distractions of laundry and lists. It’s when I see genuine smiles and loved ones. It’s the hardest and softest place I know. There is greatness in coming before God in raw, brokenness and suffering when I have no words to pray and no song in my heart. It can take more than a Sunday to reach the “even so, Lord Jesus”.

Yet, “Monday”awaits. Lunches must be made, sticky floors need mopping, boys must be raised into men. Monday marks the beginning of News, Treatment, Illness, Blood Counts, Crying, Healing, and all the Normal Things that don’t stop for malignant tumors. We are ALL facing our own Mondays. May your Sundays be stronger than your Mondays.

Scary Things and Tumor News

 

My first venture into a “haunted house” was in 6th grade; a teenage goblin  tripped me and I barreled into a wall, resulting in a 40 year old skeleton carrying me out of the exit. I was greeted by prepubescent laughter–supremely frightening. I’ve avoid intentional scares and ‘hauntings’ since then, but each time something terrifying jumps out, my immediate response after a moment of a shock is to strike back–it is best I avoid paid gremlins.
Suspense frightens me much more than the Things That Lurk. God bless the women who scream in theaters, “He’s behind that door! Run, Girl!”  A greater blessing still in the one who yells, “Stab that Creep back! He has Mommy Issues!” Laughter helps illuminate the Dark Night of the Soul.
My last mandatory “fright walk” was a high school team-building exercise. The full moon shone and others walked slowly, arm in arm, down the outdoor path. I confidently skipped along in a totally uncharacteristic way for one reason. For the past three summers I had attended church camp at that location, often praising and encountering my Lord in the place that was now darkened and meant to frighten.  I’ve walked difficult paths before and painfully learned to navigate it with the presence of the Most High.
A glance at our medical charts can look like motherhood nightmares. I was warned pregnancy wasn’t likely, followed by pregnancies intersecting with deployments, and birth issues. Born without oxygen and in distress, born premature, Down’s Syndrome, Failure to thrive, feeding tubes, Autism, Acute Myloid Leukemia, and now a bleeding brain tumor that will result in more oncology treatment. Our Christmas Letters are absurd.
I don’t think I received a raw deal or have a hard life– quite the opposite. We have an epic tale, and I adore a superb story.
As I sit in a hospital room with my dearly loved firstborn son, I am at peace with this familiar territory. Grappling with sleep deprivation and Sovereignty is familiar.
The ones that work in haunted houses are soon bored with what terrifies others. We will walk through head up and facing what comes head-on. There are some terrifying things behind the doors we are about to open.
BEHIND DOOR #1: The foremost neurosurgeon sat with us after surgery and told us the tumor is purple and the consistency of a dense currant jelly. Years of experience and close looks under the microscope showed that it was malignant. The current working diagnosis is a medulloblastoma. They were once ALL fatal. Research done primarily at…Johns Hopkins… has helped change that.
DO NOT GOOGLE. (Shudder) Allow me if you love the technical details.
DOOR #2: Again, this is ALL we know about the tumor and future treatment. It was been exactly one week since surgery. Full, thorough pathology usually takes 7-10 days. Results will come and the door will open. Jonathan’s skull and brain need to fully heal before anything begins. Our current situation has PLENTY to ponder without the what ifs.
DOOR #3: Treatment: There are many potential paths. Radiation and chemo could be inpatient, outpatient, and combination and and in a variety of duration. WE DON’T KNOW.We won’t open the door until we have faced door #2.
Handling the suspense: We know this is difficult for y’all, Dear Ones. Go ahead and freak out. Panic. Grieve. Bake. Write. Cry. Run. Yell. Whatever you want to do. Just know that soon we will open Door #2 and #3 and then it will be OUR turn to react and then help Jonathan learn how to look the Scary Things in the eye and fight back.
When things are Impossible and Insurmountable, the Infinite  works.  Taking Up Your Cross and obeying commands will attract frightening things. A real Enemy is at work and is after the souls of my sons.  However, the God I worship and imperfectly obey also gave his Son over to die. You may not agree, Friend, but I have staked my soul in this Truth and will live accordingly.
Please join us as we walk and discover what is in store.
Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Isaiah 35: 4 say to those with fearful hearts, “Be strong, do not fear; your God will come, he will come with vengeance; with divine retribution he will come to save you.”