This morning we walked toward the desk to register like normal when I noticed the family at the desk.
Mom and Dad. And a little girl with thick, healthy hair. That’s all it took to tell me it was their first visit.
We were sent to the far desk to register and while we waited, the family walked past us on a tour. Here’s the pantry. We have cereal and juice and you can get water and coffee. Here’s the IV room.
Her little pink floral leggings, matching headband over a cute hairstyle, and pink boots safely flanked by her mama and her daddy in subtle contrast to the rest of us in well worn rhythm of comfy clothes, one caregiver, and tired eyes.
I didn’t watch; but I couldn’t not see.
Thinking about what was in their heads and the trembling in their hearts gutted me.
Do we need to separate the goodness of God from our situation in order to make sense of His goodness?
When someone gets a full night of sleep with three little kids and wraps it up with, “God blessed me so much” … do the words ring hollow to me because if it’s about God’s blessing and goodness then why am I trapped in an apartment seven hours from home with five kids and cancer treatment? Do I need to separate them in my mind to believe?
God is good always. But my situation is part of a fallen world.
It fits. I compartmentalize to help it make sense. Because if it makes sense, I can believe it.
However, if I separate those two too far, then I separate from my ability to call on the power of God to move in our situation. If God and His goodness is in one box and my broken world situation is in another box, the two don’t touch each other. Well, they do whether I choose to believe it or not because God doesn’t change who He is based on my belief of Him, but stick with me for a moment. Because while what I believe about God doesn’t change who He is, my belief about God changes me.
This wrestling of a good Father is not new to humankind. In our limited time at a counseling training center and in my own time with a counselor we read books diving deep into exploring the difficulty our hearts experience as we find ourselves in places that seem so opposite of what our minds describe as goodness. If learned theologians haven’t fully answered this question, I’m certainly not going to add any insight.
There’s truth in all of it. The evil is not from God. That much I am sure of. People around me growing up used to throw around the phrase permissive will. I really dislike that phrase.
There are forces of evil in the world. Because of human choice, God has stepped back from pulling puppet strings that keep us robotically moving so that everyone and everything stays in sync and we never suffer.
This feels different to me from permissive will because that still sounds as though He sent it. I think it’s more like withholding action to allow choice (which is probably the same thing as permissive will and I just have a problem with certain words) and the ripple effect of sin.
But if I take this too far …. Here is my very good God. Here is my ugly situation that is part of a sin cursed world …. now I’ve removed God from my situation and made Him powerless in my mind.
What does it look like to believe in God’s goodness in my situation, not because of it or in spite of it? How can I demonstrate this in the words I choose both in good times and bad times? I mean, we never say, “I was up three times last night with my chemo child. God is so good!!!”
It’s never wrong for us to say God is so good; but I do wonder if the way we tack it onto the back of places that feel good to our human self reinforce the idea that God’s goodness is couched in things that are earthly blessings? Is it possible that what trips us up when the chips are down is the way we have taught ourselves?
I don’t know the answer to these questions. I do believe that God delights in giving good gifts to His children and that many times those do look like earthly blessings. Maybe it’s not possible to know with your heart without raw suffering. But I’d like to believe that how I choose my words can help my children to understand His goodness in a way that doesn’t bowl them over when they hit the desert in their lives and still allows them to engage with Him on a heart level, not just a mind mantra to power through.
To help them understand the God of redemption. His presence and goodness in the darkness when it doesn’t get taken away and the way He redeems every broken experience to become powerful in His kingdom of light. That our human experience can be like creation — a mass void of form that at His spoken word emerged into a world of day and night, seasons and rhythms, trees and flowers, oceans and lands.
It is not too much for Him to also make this wilderness a beautiful place of light and life.
Maybe the next time something good happens I’ll just express my profound gratitude for the gift without adding, “God is so good.” Or maybe I will. Because I now also find myself adding words about God’s goodness in the middle of this moonless midnight.
It’s odd how some things leave you with fewer answers and more knowing deep in your soul where words don’t fit.
The past two weeks have had so much hard in them I don’t dare to write about it here.
Like other difficult things people experience in life this is multifaceted. There is a visual battle ….. chemo for cancer, surgery to remove tumors. There’s a not as visual but still kosher to talk about battle … some of the losses, fear, faith, effects on your family. And then there is other level hard the stuff you only see or grasp if you’ve walked similar shoes. Some things you don’t even want to remember, but they should probably get unloaded with a very safe friend or therapist someday.
It’s odd the way you think it should get better after surgery. Great, cancer is out. Let’s start healing, right? But it’s not that simple. Cancer is filled with a million curveballs like basically nonexistent necrosis and even when it isn’t, some cancers, like osteosarcomas can relapse even while you’re still on chemo.
Some days you think you “should” be celebrating but in reality you are grieving. Some days you “should” be sobbing your guts out, but in reality you feel the presence of God speaking promise to you. There are no rules and somehow you have to let go of self expectations.
But it’s not just your own journey that causes odd emotions.
I just saw a post about a kid diagnosed in October (three months after Liam) with metastatic osteosarcoma and he is now on hospice. This is so heartbreaking. It feels almost wrong to celebrate the goodness happening to Liam The miracle that he didn’t have metastatic disease at diagnosis with such a huge tumor is nothing short of a miracle. I could cry a million tears for that family. The guilt they must feel. The anger. If I put the pieces together correctly he’s the kid at our home hospital who was misdiagnosed for months because he was an athlete and they thought it was just sports injuries. Lots of kids got missed because of Covid and virtual visits. Just heartbreaking. The anguish those parents are going to have to live with.
How do I find space for their grief and my celebration simultaneously? How do I find space for my grief and celebration for other people’s normal? Or my grief at the 5% necrosis and celebration for another child diagnosed almost the same time who had 100% necrosis?
Sometimes you have to know when to walk away and take a break. But there is no way to take a break from knowledge. I have absolutely no idea how I will ever reintegrate into normal life when this is over.
One of the big challenges of my life is being mom to three little people while going through this. That’s a job in itself. Add ongoing unrest, all the time away from home, extra (sometimes unfamiliar) caregivers and it becomes a super stretch.
In order to keep from buckling, I have to stay grounded in the Word — yet there is hardly ever uninterrupted time until David comes or Liam is admitted and then I get pockets.
I know that God’s grace and mercy extends and covers me in between. He is not a task master, but rather a life giver. The more I spend time with Him, the more my heart settles and my soul comes to rest.
It is an odd thing that the hardest things can cause us to see how very much God loves us and see us.
There are days when I get glimpses of the darkness. Of the terrifying forces of evil warring in this broken world. Days I feel overwhelmed with fear and hopelessness. And there are days when I can feel the truth that we walk this road beneath the cupped hand of God our Father. I say with David the Shepherd, “Yeah, though I walk through the valley of the shadow of death, I will fear no evil. For you are with me.”
There are days of pain, vomiting, suffering, tears, and meltdowns from the little ones. But then, too, there are days when I hear laughter from shared jokes, a tangible, underlying sense of rest and sustenance within our apartment and I know the truth of, “You prepare a table before me in the presence of my enemies.”
I find myself toppling over the edge over one small, insignificant thing … stifling sighs of weariness when Liam suddenly realizes he needs to pee just after we went through all the work of getting him positioned out of his brace and into his CPM and got all five pillows in just the right places. Other times I catch myself genuinely thanking God from the bottom of my heart for things in praise that can only be generated by Him. Thanksgiving prayers for results we are hoping to see. Thanks for sunshine when it’s twenty three degrees with a frigid wind. Thanks for a God who loves us so much. A feeling of being humbled and honored at being allowed to walk beside Liam in this story that is clearly telling the presence of God.
I am human.
I am also learning more of what it means to move and live from the supernatural power of God.
This fire is painful. But it is also revealing areas of where I need to lean in and learn about deeper levels of selflessness, dependence and trust in God, and deeper knowledge of what it means to live loved by God.
“You have kept count of my tossings; put my tears in your bottle. Are they not in your book? This I know, that God is for me. In God, whose word I praise, in the LORD, whose word I praise, in God I trust; I shall not be afraid.
“I will render thank offerings to you. For you have delivered my sould from death, yes, my feet from falling, that I may walk before God in the light of life. Psalm 56:8-13 1-30
You know the movie, “One Flew Over the Cuckoos Nest?” I wish pediatric cancer were far enough advanced that what we are experiencing today would look equally astonishing and barbaric.
Some pediatric cancers have made huge advances in cure rates (not toxicity); but others, like osteosarcoma, are sitting around with basically the same treatments they’ve used for forty years. Surgical options have improved. There used to be no choice except amputation. But the chemos? Horrible. So toxic and the actual cure rate for osteo is terrible. I’ve been trying to spare Liam the facts. We’ve been really honest with him that this a fierce battle. He knows the side effects of the chemos he’s taking. He knows that this cancer is an especially bad one and he asked me point blank soon after diagnosis if this means he has more chance of dying and I couldn’t lie. But the day his surgeon told him there were microscopic tumor cells left per the pathology report, he cut straight with facts in front of Liam while I cringed.
Long ago when they did only amputation (wide margins) and no chemo, there was only a 17% survival rate. Now that they also do chemo, osteosarcoma has a 54% survival rate irregardless of surgery type (limb salvage, amputation, rotationplasty). Fifty-four. That’s basically one in two. And he told him all this in the same paragraph of his abysmal necrosis and positive margins. Liam is only twelve, but he’s incredibly smart. I couldn’t believe he was telling him all this. I know in my heart he was trying to be encouraging. That in spite of the margins at least the chemo was helping him. But it felt like anything but hopeful in the face of 5% necrosis. I wished Liam wouldn’t have heard that. Especially not the day before going into yet another surgery.
Survival rate doesn’t mean cure. It doesn’t even mean event free survival. It basically means that 54% of the population is still alive after five years. If you die the day after five years, you’re still considered a survivor. If you turn twenty-one and die you are still a survivor because you aged out of the pediatric part. If you relapse and relapse and relapse and are still in treatment at the end of five years you are still a survivor because you’re breathing.
Some days I feel as though we are moving in a horror movie. I wish it were.
I’ve seen and heard things I’ll never unsee and unhear. The nurses in gowns and gloves and masks and goggles to avoid any potential exposure while holding a sealed bag of chemo, the contents of which are going to flow straight into my child’s bloodstream next to his heart.
The dad carrying in his one year old and stopping by the desk. The bald baby looks too young to talk, but extends a hand and says, “arm” for his wristband in that innocent way babies do when they know the rhythm of bath or brushing teeth. That moment crushed me.
The child whose speech pattern identifies with downs syndrome a few cubicles over who yells nonstop for fifteen minutes during port access and then continues to talk loudly about everything and nothing and mostly repeating, “Get it out. Get it out right now,” for the next two hours.
Our roommate in the hospital who was about five who screamed and screamed and screamed and screamed and screamed for his mommy, that his tummy hurt, that something was trying to kill him, that he was going to die.
Another roommate only about three or four who had a nosebleed that would not stop because he was so neutropenic he had almost no platelets left. This is what happens with chemo. He screamed in absolute terror as they tried numerous interventions to stop it over a period of two hours while he bled so much he needed a blood transfusion.
Yet pediatric cancer gets almost no funding and much of what happens in treatment is using drugs that have been tried on adults for other cancers. It’s so wrong. There have to be so many unexplored avenues that are far less toxic and effective.
The difference between “One Flew Over the Cuckoos” nest and our story today is that the nurses and many of the doctors are so compassionate and respectful. Honestly, I don’t know how they manage to watch this level of suffering day after day after day and still offer so much care. The nurses are like angels. But how I hope that someday, very soon, people will watch the movie of these kid’s very real life and shake their heads in horror at how lacking medical science was.
It’s a completely different experience doing chemo here. I’m guessing that’s true no matter where you go. Check in was fast and efficient and we were guided into a very tiny room with walls that didn’t quite reach the ceiling and a curtain for a doorway.
Liam has so much gear. Our first Uber driver actually canceled on us and the second looked shellshocked. I try to tip them enormously; they’ve all been so kind. But never have we had so many things. A big suitcase with things for our stay, a slightly larger than carryon size suitcase with the limb lengthening device, the big heavy CPM machine, two backpacks, the wheelchair, and crutches. Adam helped me get everything downstairs and he and the driver loaded while I got Liam in the car. At the hospital we piled everything on the sidewalk until the people at the door could come help.
Our room was so tiny she had to pull a chair out of it just to make room for everything.
Surprisingly, Liam had no anticiapatory nausea. The hospital doesn’t smell like typical hospital here. I’m so curious what the difference is; but our child life specialist agreed when Liam talked to her about it. That helps significantly. The OR floor smells like an OR floor, but the regular floor doesn’t smell like the regular floor at other hospitals.
Usually he shuts down the instant he walks in the door. He won’t smile. Doesn’t want to carry a conversation. He won’t eat until his chemo is about 24-48 hours in history. This time, he was already finished with his first Etoposide and we were in the middle of Phase 10 when I said, “You are doing so well.”
“Oh but they haven’t even hung my chemo yet.”
Umm, yes they did. These chemos are clear. It’s just a mind thing, but somehow they look less sinister than the awful red and yellow doxyrubicin and methotrexate that look like the poison they are snaking into your body.
He ordered and ate lunch. I was dumbfounded.
Not long after the bed was ready and he was admitted. To my shock he tolerated getting up and riding over in the wheelchair. That afternoon about an hour before his Itoposide finished he got really sick. We tried a few more drugs and the second one worked. By evening he was much better!
On Day 2 we gave him the hydroxyzine between his chemos and had zero nausea. Did you hear that? ZERO. I almost cried. After months of hiding in the bathroom to scarf down a few bites or just not eating so that he wouldn’t see or smell food, I could not believer it. I always ran a diffuser with orange, cinnamon, and vanilla to help the room smell better and it made everyone comment on how good the room smelled. Unfortunately, some people added that it smelled like someone was baking and even that was enough to produce immediate vomiting. Once we even had to put a sign on the door for no one to mention food in any form.
My heart just exploded with gratitude! No one can take away the fact that he’s getting infused with extremely toxic drugs, but at least he doesn’t have to suffer from the debilitating nausea that goes with it. It was an enormous gift to have him feel well enough to play games and eat.
Because he was doing so well, we decided to switch to outpatient this cycle already.
Thankfully David arrived super late Thursday night so he came and picked us up Friday night. Liam went home with three backpacks of IV fluids and meds. It was incredible!! He also got his first shower since December 17!!! We had to be so careful because his port was accessed and I still didn’t want to spray water directly on his incision. But he sat on a shower chair and I sprayed his back and as much of his body as I could. His face! It felt so heavenly to him to feel that water hitting his back!
We ate garnachies …. all seven of us around the table. Oh the gift of it!
We’ve never been a gaming family, but with Liam glued to his CPM, he has few options of activities. His brain is still not quite ready for reading and he has so many hours to pass. My brother in law who loves flying gave him an RC game and when our former neighbor heard about it, he bought him a gaming computer. David brought them with him from Virginia. Liam was overjoyed! I think his hours are going to fly by.
I’d been dreading going in. It felt like every time we heard anything we just heard more horrific news. But as the morning passed I had a chance to pray and talk to God. The words that kept coming to me were these, “Even though I walk through fire, I won’t be burned….” It is always so incredible to me to think of the story of Shadrack, Meshack, and Abednego in the fire. Before, I was always mesmerized by the way Jesus came down and was with them, too, and the way they weren’t burned even though the people throwing them into the fire fell over dead from getting so close to the heat. Now with Liam’s story when these words come to me, the part of the story that comes to my memory first is the way they didn’t even smell of smoke. These days feel like a raging fire some days. But no matter what, in the end, our spirits will stand with Jesus, smoke free.
Time seems to stand still at the hospital here and I’m slowly learning not to plan anything according to appointment time. Supposedly he would have an Xray at 1:30, wheel up to 9 to see oncology about the new chemo plan, and then back down to see the surgeon at 3:45. I expected to be home at least by 5. Instead we got the X ray, headed to 9 and sat there until 3:40. Luckily a friend we met here who is about two months ahead of Liam in the same journey was here and we got to talk with them part of the time.
The isolation of Covid extends far futher than just not being allowed siblings or even two parents in the hospital. It means that so many of the things typcially in place are gone. Instead of going to the playroom and meeting other kids, you stay in your room except for short walks in the hallway. This kid’s mom reached out to me before we came via one of the cancer facebook groups and their presence has been a gift from God! She and I text each other tips and support. No one gets it quite like another mom whose child is fighting the same cancer and same surgery technique. We don’t have to explain much to understand all that is going through the other person’s head. But we also get to encourage each other and speak life and truth and trust in God to each other, especially in the hard questions. I have no doubt we’ll be friends for life. And oh how I pray our boys budding friendship gets to see longevity here on earth.
We finally headed down for our surgeon appointment and told them we’d come back afterward. When we got there, they said he was running three hours behind so we headed back up to oncology to wait some more. Finally we were seen, signed papers, got our Covid swabs, and headed downstairs to wait some more.
A few minutes before eight p.m. we finally got to see the surgeon. I have no idea how in the world they maintain this kind of schedule. It’s not fun to wait so long, but we were just sitting and waiting. That is an incredibly long work day. They were super pleased with the way his wound is healing and said we’d start chemo the next morning.
I asked if they had a pathology report from the second surgery yet and he said, “only verbally, but it’s good so far.”
I said, “Oh my goodness! Can I yell?!!!!!”
He is so polite, formal, and thoughtful. But he smiled and said, “sure.”
I pumped my fist in the air and loudly said, “YES!!!!!!! Oh, this makes me want to do the mama dance.”
Liam just shook his head and said, “Please don’t.”
“This is just like business. It’s not official until it’s in writing.”
“I know. But I’ll take verbal good news.”
He did what he needed to about the wound, gave us advice for ongoing, and started to leave the room. Then he half turned, looked at me, and said, “You can yell again if you want to.”
“WooHoo!” I said for good measure. Apparently most mamas have more self control than I do. 😉 But this is such good news I want to shout it from the Manhattan skyline. Do I wish it would have happened the first time? Yes. They always try to take the tumor out completely without touching any of the malignant cells. Breaking the line inside means spilling tumor cells. That’s why some people are frustrated with biopsies because you always risk spreading the tumor. But I would much rather all microscopically visible cells be removed in a second sugery right away than to leave some behind and give them time to regrow, especially with such a poor chemo response.
We finally got home at 8:30 …. suddenly needing to pack for a five day admission the next morning.
There are many days when I wonder how in the world I’m still standing upright. There are days when I physically feel my body almost buckle with the weight of it all and within seconds I feel my body rise with strength.
There isn’t a doubt in my mind that it is because of the prayers of hundreds of people, holding us up with grace and mercy from God.
They say it takes three to four days to recover enough from a gut blow of difficult information that your body and mind can function normally again. Mine doesn’t seem to ever function normally anymore, but it’s definitely worse in the few days after a hard blow.
On Friday a friend came to spend time with us. It’s so nice to have friends for the little ones. When someone comes, they bring with them the essence of their normal and it temporarily eases the percentage of heaviness in the air. Because of Jesus, we have moments of laughter and fun and music and dancing at our house. I like to think of them as the tables in the wilderness the way it’s described in Psalm 23. But having someone else here can definitely distract the kids, especially the little ones.
I fielded so many phone calls that day about the CPM machine Liam needed. Of course, they can’t all be collected together so that you can decide, this is my two hours of office work. They’re all randomly happening throughout the day, interrupting whatever my brain finally managed to do. So many days I just spin in circles, never, ever reaching around and getting to the end of it and having no idea what I did or if I did anything at all. It’s all just a blur.
Saturday morning a prayer warrior friend called to see how she could pray with me. I told her some of my confusion and asked her to simply pray for God’s presence. We really don’t know the path ahead of us and we can’t know it; but more than anything, I want to be close to Jesus. She prayed that we would have multiple confirmations throughout the day of God’s Presence.
At first glance, it seemed the opposite happened.
I was so thankful to see David. He arrived in the wee hours of the morning Saturday because of having stayed longer with Liam’s surgery the weekend before. Every minute we have together as a whole family is like a precious gift. That afternoon we all went to Central Park on a walk. We’re almost a tourist attraction on our own, judging by the looks we get when we venture out. Families of seven don’t seem to exist in Manhattan and certainly not families of seven plus a wheelchair.
On the way home I glanced across the street and saw someone who could have made my blood turn cold. The intersection was enormous, but I still whispered to David and the boys. Somehow, in spite of parked cars and several lanes of traffic between us, we caught his attention. The look on his face sent chills through all of us and the instant we got the ok, we crossed the street as quickly as we could. We walked home as fast as we possibly could. I wasn’t the only one furtively casting glances across my shoulder.
Later, inside the apartment, I was trying to remember why and what shook me. It was his posture and the look of his face more than anything. I had moments of wondering if he was human. 100% of the population here wears a mask. He didn’t. But more than that, you could sense the presence of darkness. I knew that we were surrounded and carried by God, but that doesn’t mean satan doesn’t try to destroy us.
When we got back Adam wanted to go on a bike ride so we said yes. I was reading my Bible and journaling when I suddenly got an odd feeling. I looked at David and said, “When do I get worried about Adam? I forgot to look to see what time it was when he left. It feels like he’s been gone a long time; but I really don’t have a good sense of time right now. I should probably have a time frame typically otherwise I won’t know when I should start looking for him.
“I’m going to call him,” he said. He tried, but didn’t get an answer. About five minutes later Adam called him, “Hey, I just had a wreck.” I will never get over the gift of intuition God has given moms. It was probably right when Adam was thrown that I wondered if something was wrong.
He had an absolutely freak accident. He was cruising along when the grip on his handlebar flew off and his hand went with it. That torqued him to the left and he hit a parked 2020 Mercedes. He doesn’t remember what happened next. He remembers hitting the car and landing with the bike on top of him, but that’s it. Thank God he wasn’t thrown the other direction into the oncoming traffic and thank God he wasn’t hurt!! I feel as though he was just surrounded by angels!
The owner of the car owned the cologne store right there and came out to talk to him. He was relatively nice, but his employee told Adam that he could be thrown in jail for twenty-four hours for not carrying ID. Either we need to become more city savvy or then I’m really upset at him for threatening my sixteen year old son.
That same day I found out I didn’t have help the next week. Christy and Ian were planning to fly up Sunday, but their Covid swabs were positive. Ian’s came back first and he had zero symptoms! Christy had some congestion, but thought maybe it was lack of sleep. She’d just been asking me if I was still okay with her coming when she got Ian’s results.
That night Harrison wouldn’t settle. David was up with him for an hour in the middle of the night and I took a turn for the next hour. During that time the darkness and fear I’d felt all afternoon broke. The fear left; but even more the oppressive darkness left. I’ve felt this several times since Liam’s diagnosis. I don’t know quite how to describe it, but it’s very oppressive and tangible.
Harrison finally settled as I prayed over him.
Sunday morning I was combing the girls’ hair. We’ve long had a tradition that they get to watch youtube on Sunday mornings when I do their hair. They have so much hair and on Sunday when everything is a rush it made life much calmer. Now we don’t have a Sunday morning rush because we don’t go to church, but the treat remains. The girls always pick kids movies. Always. But that day Zara chose two adult songs that spoke directly to my soul. “Let it Go,” by Jason Grey and “Reason,” by Unspoken.
David shared words from a friend with our little family about the story of Job. In many of the stories of adversity in the Old Testatment it was because the Israelites had sinned and God was displeased with them. But the story of so many trials and tests in Job’s life begins with God boasting to satan about his servant Job because He was so pleased with him. He prayed that we could keep that mentality of God’s goodness. Of how much God loves us and is pleased with us and that we could live out of that in this time of so much hardship and shadow.
God honored my request from the day before. God’s presence was so felt that day. It was as real as the darkness the day before. In retrospect, I remembered words from Lisa Tyrkeust who (loosely quoted as I remember) said, “When the shadow is darkest, that is when God is closest. Just as in real life, light is right outside the darkest shadow, so too, God is so present when we can only see the shadow that separates us.” I sensed that presence in the angels protecting Adam the day before.
Therefore hear this, you who are afflicted, who are drunk, but not with wine. Thus says your Lord, the LORD, your God who pleads the cause of his people. Behold I have taken from your hand the cup of staggering; the bowl of my wrath you shall drink no more; and I will put it into the hands of your tormentors who have said to you, Bow down, that we may pass over; and you have made your back like the ground and like the street for them to pass over. Isaiah 51: 21-23
Awake, awake, O [Michelle]; put on your beautiful garments, …. Shake yourself from the dust and arise; be seated, loose the bonds from your neck, O captive daughter. Isaiah 52:1-2
On Monday my mom came back to spend another week. I’d thought maybe we’d be ok on our own, but it’s just too shaky to think of having all the kids here and never knowing when I need to be in with Liam. I was so glad I’d said yes when she offered because when I checked Liam’s portal it was obvious they expected him to restart chemo. The owner of the Mercedes sent us a quote for $3700 worth of body work to get his car fixed. Apparently you can do a lot of damage with a bike if the car is new enough and expensive enough. Thankfully our homeowner’s insurance will cover it.
That afternoon when Mom, the girls, and I headed out on a walk we got stuck. There are three doors to get to our apartment and the middle one quit latching, much less locking. She was trying to get it to at least shut when it pushed through to the other side of the stationary door and wouldn’t budge one way or the other. The boys were upstairs. We were stuck outside. In my desperation to dislodge it I dropped my phone and broke the screen.
David called Adam and between the two of us we got it open. Tuesday morning we woke up to a cold apartment and realized the heat quit working.
Will it ever end? I know God is here; but I feel so weary of the long shadows. Gently God led me back to perspective. In this moment, it feels never ending. But at the end of our life, we’ll look back and see the tiny blip this was. A hard blip, yes, but a tiny blip. But even more, in eternity when we get to be with God for what is truly never ending, we will see that our times of intense suffering were so very, very short. Perhaps this is why the tangible presence of God is such a gift here on earth. It is a glimpse of eternity.
That the God of our Lord Jesus Christ, the Father of glory, may give you the Spirit of wisdom and of revelation in the knowledge of him, having the eyes of your hearts enlightened, that you may know what is the hope to which he has called you, what are the riches of his glorious inheritance in the saints, and what is the immeasurable greatness of his power toward us who believe, according to the working of his great might. Ephesians 1:17-19
I spent so much time Wednesday morning on the phone with the discharge coordinator trying to work through getting a CPM machine for Liam. Our insurance is worse than slow moving sap in January for anything out of network. We finally agreed to pay for it out of pocket.
That afternoon we had a virtual meeting with the chief of oncology at Memorial Sloan Kettering. It broke my heart. I’d heard the words 5% necrosis; but hearing him call it progression of disease was worse than anything I’d imagined.
The growth on imaging they were assuming was from cell death was now being attributed to progression of disease while on chemo because of the 5% necrosis. It was absolutely horrifying.
We’d just done fifteen weeks of poison and it had done nothing to kill the cancer.
Worse, that meant the beast, Frankenstein, had gone unchecked.
It was high time for a repeat CT to see if it had metastasized to his lungs.
He told us they were recommending switching to ifosfamide and etoposide and that we should come to get papers and sign consent when we came for surgery followup.
It all feels like such a cruel joke. Parents sign consent, but the truth is we don’t really have a choice. There are no other options and even if you were to attempt to pursue anything else with a child, they would take custody of your child. So they tell you to sign consent, but it’s actually cursory.
It rips my heart in a million pieces to sign those papers. I feel as though I’m handing him over for words I won’t repeat here. Every chemo is horrifying, but some are worse than others. These are far more aggressive and we can only hope his tumor cells respond. But it means his body takes a more aggressive hit, too. Far more bone marrow suppression, increased chance of secondary cancers because of the DNA damage from chemo, rare but possible severe neurological damage or coma. One of them is so toxic to your bladder they have to run a protective medicine for 24 hours the days you get chemo. This is what we call treating pediatric cancer. And this is what it means to sign consent.
I asked him about Liam being a candidate for Mepact and he laughed. He’s actually a strong believer in Mepact, and it seems it was more about the difficulty of obtaining it; but the horror of that laugh still rings in my ears. Mepact is an immunotherapy that has been approved in 45 countries, but not the US even though it has shown some (not a slam dunk) help in preventing recurrence.
It feels as though someone has punched me in the gut over and over and over and over since July 29th. I’m so numb I can’t really feel anything anymore. Aside from very rare occasion, I rarely cry anymore. Everything is just numb. Except for the sucker punches in the gut. Over and over and over.
David was in Virginia when we had the meeting so we called each other after. What do you even say? What do you do? When he prayed at the end, he prayed that if it would bring glory to God, He would heal him. I cannot shake the sense that this story is more about God than anything I’ve been part of. It’s a really difficult story to live out when everything you’ve been shown on the path feels called into question.
Because they only took 1 and 1/2 cm of bone this time and no additional muscle, as opposed to 20 cm of bone, an entire muscle, portions of two additional muscles, and funneling out a biopsy track, I expected this recovery to be a breeze. But it felt like starting over and took almost as long as the first one to recover.
Surgery recovery was so different than I expected. I knew there would be pain, but I didn’t realize how much kids need to sleep afterward (sometimes scary amounts of sleep that make you feel like something is wrong … it’s not, they’re just exhausted and recuperating from anesthesia. But I also expected him to wake up ravenously hungry. Your body has increased caloric needs during recovery, especially in protein; but the anesthesia meds and narcotic pain killers also slow down your gut motility and suppress your appetite.
Liam had just been starting to eat better after his first surgery when he got walloped with the second one and then he went another week and a half of hardly eating at all. He looked so thin and frail. It hurt me terribly to think of him starting chemo like that.
On Saturday Adam tore his knee up terribly playing basketball and tearing around with a friend. He had a huge skin abrasion that went second degree in part of it. I just shook my head. The week prior he was running and saw a road barricade so he tried to jump it. His foot caught on the upper rail and he nearly landed in the sink hole it the barricade was keeping people out of. He shattered his phone screen, but thankfully he was ok. Those kinds of shenanigans are just part of life with boys, but we were all starting to worry about his leg pain that didn’t go away.
Last fall he started training for a 10K. He did great and came in top of his age division. Toward the end of training he developed some significant leg pain. It would go away and come back. He refused to stop running so I finally took him to the pediatrician. She said he needed to rest it and then he could start back up. He didn’t run much anymore until we got to New York City. The city is so perfect for running and it was a great outlet for exercise. He loves it and quickly set a goal to run 50 miles in January. The pain came back full force. He tried to pretend he wasn’t worried and it was just shin splints, but we all had a little worry in the back of our minds. You can’t watch how innocuously bone cancer starts and how devastating its reality is without doing it.
When I heard Liam tell him, “you know that’s exactly how mine acted,” I knew it was time. Tuesday morning I had a telehealth with our pediatrician in Virginia. It felt crazy. Sitting beside one child in NYC recuperating from his second surgery talking to our pediatrician in VA on the computer while holding my phone and face timing Adam so that we could all three talk. She agreed it was time for an X ray just to make sure.
Reading stories of people who live life with great courage always inspire me. Today these words from the apostle Paul reached deep into the foundation of my heart. So take heart, men, for I have faith in God that it will be exactly as I have been told. Acts 27:25
That day we kept getting yes then no answers about discharge. Liam and I were both so ready. After the first surgery it was me who was holding back. I wasn’t convinced we were ready. This time the doctors were holding back and I said, “We know what we’re doing. We can do this.” It’s amazing how fast you learn a new dynamic.
We knew exactly how to move Liam’s leg when getting in and out of bed, navigate going to the bathroom, the order for sitting down … get in position, take crutches, he grabs the seat while I simultaneously lift his leg in the right places but not too fast and then ease with his body to get to the right spot. It’s trickier with the wheelchair because you have to lock the leg rests in the right places and our wheelchair is a wimp that already has pieces that aren’t working correctly. Or maybe it just wasn’t made for boys who race down bumpy paths and sidewalks outside.
The nurse made a few phone calls to get a CPM machine up so we could learn because that was the last holdup and just like that they said we could go home! We were ecstatic!
My mom arrived on the train while we were gone and early Wednesday morning David and Adam headed to Virginia … David to work and Adam for an Xray and snowboarding as soon as it cleared.
