Losing Our Hair but Not Our Minds

The doctor’s expression mixed disbelief with doubt. “You actually want us to shave his whole head?” I answered with a smile. “Yes. If you shave part of it for the incision and stitches, it will be uneven and it will be terrible to cut around in a few weeks.”

The doctor shrugged with a smile. “Most mothers panic about their kids going bald.  Then again, I guess you’ve done all this before. We can shave it. He will most likely lose it all in a few weeks if he gets radiation though.”

The third week of radiation treatments often bring side effects of hair loss, skin rashes and discoloration, and ‘discomfort’.  We learned with William that hair often falls out in patches in a way that is itchy and most unattractive. Eventually, William just needed a buzzed “Buddy Cut” from Dad. He was a smooth headed 2 year old by the following week.

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Jonathan’s head is still sensitive from his new scar and his hair falling out and into his collar will make him most displeased, so we decided to bite the bullet early. With a new fuzzy hat in tow that matches his favorite red and black pattern, we made a night of it.

Ever the leader of our family and an example for our sons, my husband got the clippers out and let Jonathan give his first ‘buddy cut’ as it is called in the military.

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Then Jonathan’s turn.

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However, William got jealous. He loves having buzzed hair so that people will rub his head.

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I too, cut about 6 inches of hair off.

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Last but not least, without the permission or blessing of my mother, my amazing father joined in. He has been here helping for a month, which has probably kept me from pre-term labor. When Jonathan woke from sedation last time he hugged me and then promptly asked for Pop. Three generations of cancer support. (He did buy matching hats for all the boys.)

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We’ve been honored by several friends who have shaved their heads in William’s honor. A shaved head is quite a symbol. Now known as a side effect for cancer treatments, it is an indicator that the body may not be as healthy as it appears externally.

 

Hair is a big deal. Hair-care is a billion dollar industry and a way people represent themselves. The bible mentions hair 88 times in various contexts, from identifying and treating contagious diseases to honoring gray hair that comes with the passing of time. I am convinced the ER trips alone turned my mother’s auburn hair into her current gorgeous white. She taught me this verse early on:

Gray hair is a crown of glory;

it is gained in a righteous life. Proverbs 16:31

Gray hair and natural baldness have their mention, but there is an entirely different context for grief-induced baldness. It was a sign of great lament or capture to have one’s head shaved.  People would tear their clothes, shave their heads or sprinkle ashes on their hair, and enter a state of severe, profound grief. The wailing was accompanied with grief that God had forsaken them, which is often how it feels when grief is  encompassing. There are dozens of such verses.

“‘Cut off your hair and cast it away;

raise a lamentation on the bare heights,

for the LORD has rejected and forsaken

the generation of his wrath.’ Jeremiah 7:29

Grief, struggle, depression and mourning are all evidenced both inwardly and outwardly. Right now some of our struggles and trials are evident physically. I am about to give birth and it is incredibly evident by my physical appearance. We all look a bit weathered and exhausted from bags under our eyes but also the intensity you will see from eye contact with any of us. Fighting for one’s life will do that, but fighting with one’s faith is eternally significant.

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In this family our struggles and our victories are shared across generations.  Both of my sons will bear similar white scars over their hearts that are unique from the rest of the world.

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Yes, we are struggling but we are sustained. Our glory is in obeying the Lord and learning to suffer well, not in health and great hair. If we teach our children, we must show them.

Make yourselves bald and cut off your hair,

for the children of your delight; Micah 1:16 a

The glorified body is coming. I can’t wait.

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5 Years Parenting in the French Revolution: William’s Birthday

Time may be the strangest of constructs. I am anticipating my third childbirth and spend each day waiting on the schedule for Jonathan’s radiation treatment. It is a strange time and yet perfectly fitting for an event worth celebrating– the fifth birthday of William.

Extreme emotions characterized the pregnancy; surprise, anxiety, sorrow, joy, frustration and hope. He came in quite a dramatic and humorous fashion, which is another blog altogether. Looking back, the events of his life make sense in a wild historical rendering, but at the time the wild torrent of shock mixed with longing for mundane make for a glorious story.

Raising William has been the best of times and the worst of times– and I’ve lost my head on more than one occasion. William is not defined by Down’s Syndrome, as much as it is intertwined with his person. It is a backdrop that cannot be dismissed, like living during the French Revolution.  If that isn’t parenting, I don’t know what it is.

“It was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity.”

“It was the season of Light: it was the season of Darkness, it was the spring of hope, it was the winter of despair.”

 

“We had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way — in short, the period was so far like the present period. “- A Tale of Two Cities, Charles Dickens

When one must live with a backdrop that is marked by suffering, danger, sorrow or pain, one lives differently- perhaps more acutely aware of the scope, breadth and significance of it all. Raising William has forced me to closely scrutinize the doctrines of sovereignty and suffering, to look to the eternal, to change my definitions of success, and to navigate legislature and civil rights. He taught me to duck an incredible left-handed throw, to value survival and the value of obedience when the the orders don’t make sense.

Raising William forced me to grapple with the stereotypes of others, to raise and walk out my sanctity of life choice, to make end of life decisions and write a will for a newborn,  to adjust my expectations to balance challenges and hope, and to have a soft heart with tough skin. We are more obedient Christ followers, more merciful humans, more resilient fighters, more joyful parents, and cancer veterans because of him. Here is to William and all those who have been changed because he is in the world.

I Love It When A Metaphor Comes Together

I rushed into the PICU hospital room, eager to see Jonathan. He was asleep after a sedated MRI, curled up in the hospital bed. My husband rose from the couch and whispered orders about the night shift. When the night shift nurse came in he apologized to her, saying, “I’m sorry the A-Team has to leave.  The B team will be here tonight.” I proceeded to give him the side-eye. “Enjoy your ride home, Mr. T.”

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Now, three weeks later, I waited for news from my husband to tell me how the first radiation treatment went. After assuring me that it went well and they would be heading home, he added something superb.

“Love,
I had time to think while Jonathan was in his radiation treatment. It may be because we have been watching too many A Team reruns at night or this could just be really, really accurate.

The way I see it, we are the A team. Let me explain:

1. We drive a van…just like the A team

2. Jonathan is BA Baracus (Mr. T). He has a bad attitude at times, he loves to wear things around his neck, he glares at anyone who wants him to do anything he doesn’t want to do. Most importantly, we have to sedate him to get him to do anything. Case in point: “When I get scared I get mean, and you don’t ever want to see me mean”- The episode in season 1 where he gets on a plane without sedation.

3. William is Face. He smiles at the ladies and gets his way, pretty much all the time through manipulation. He smiles his way through school, therapy, except the time when he is not with us.When he cooperates he does well but most of the time he is checking out the ladies.

4. You are Amy. You spend a lot of time cleaning-up after the craziness that is our little Team creates. She randomly saves the day a lot and tolerates military jargon on occasion. She is also the only lady on the A Team; don’t get bogged down in the details.

5. The determining factor will be Elizabeth. If she turns-out to be like Howling Mad Murdoch, we will have some trouble on our hands. She will probably holler most of the time in a language only she understands. If she turns out to be more like Amy, I will resubmit this analogy to you with you as Murdoch and accept some time in the doghouse for likening you to a mental patient.

Glorious.  There was just one issue… what about him?

Babe,

That makes you Hannibal. You are always calm, you usually make plans and then improvise, and we trust you. While the rest of us are reeling, wide-eyed, you are usually smiling and telling us ,” See? I told you everything would work out.”

That, Ladies and Gentlemen, is how we keep our sense of humor and go through complete ridiculousness.

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We love it when a plan comes together.

 

 

 

Day 1: The Alien Abduction

So it begins…

First, thank you to my science teachers. I actually do need to know about radiation, photons, protons, etc. A special honorable mention to Mrs. Misage; I can figure out the trajectory of vomit or a child falling. I know the speed of descent is 9.86 m/s squared.

Jonathan woke up shortly before it was time to leave for the hospital, so not eating didn’t bother him. Putting the numbing cream and clear dressing over the port caused some concern, but Jonathan took a deep breath and bravely let us put it on. The cite was nice and numb by the time they arrived and needed to sedate him. He fell asleep without a problem, which allowed the nurses to access his port and leave the needle and cap exposed. It will be exposed and covered with a dressing all week so that he doesn’t need a new needle poke each day.

Honestly, the poor kid is going through something like a B movie alien abduction. He is taken to a new place, lulled into a sense of security. He is drugged and lifted onto a silver metal table.  Adults in green scrubs and masks lean over him and give him medicine. The world blurs until he falls asleep. When he wakes up he has a new piece of plastic sticking out of his chest.  He wakes up disoriented and confused.  He then sips on apple juice until he can walk again and is told everything is fine. Everything happened in his head. Yikes.

He returned home groggy and played with his new Legos. He was happy for about an hour and even agreed to eat grilled cheese.  Then… well…

Shooting protons into brain tissue isn’t a great feeling. The next hour was very messy. Bless him, he made it to the bathroom.

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Presently he is on the couch complaining of a headache with brief interruptions to sprint to the restroom. Otherwise we are snuggling and he is generally pitiful. He is putting on a brave front but it is quite sad to see.

Our primary concern from the side effects is the lack of eating. Jonathan is a pretty skinny boy already, but weight loss is a problem if he can’t eat until after sedation and then feels too sick to eat or can’t keep it down.

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Meanwhile, my amazing husband put the infant car seat in the van for me… just not secured in the seat. When I made a quick milk run and opened the van doors with groceries I had a tiny cardiac arrest.

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William has been extremely fond of kissing the baby, making it dance and helping it eat.

willandbabyThank goodness for big brother training– the initial sibling rivalry reigned in our house. When we brought William home and presented him to Jonathan, Jonathan ran over to a black bean-bag and threw himself down on it most dramatically, wailing, “Noooo!” That about summed up the next two years.

For now we count our many, MANY blessings. Y’all are listed among them. Thank you for the encouragement and checking in.

For now, we endure and keep going. It’s what the “aliens” want.

 

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.

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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!

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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.

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

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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!

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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.

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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!