Tomorrow. Justin’s last spinal tap, also known as a lumbar puncture. He has had twenty-seven.
Tomorrow. For the last time, we will drug him with Ativan for his copious needle anxiety, refuse him food (because he has to fast), support him while they place an IV, then sit close to his face while they prep and sedate him. A large needle will then be injected into his spine, withdrawing fluid and inserting methotrexate (a highly toxic drug, but one which, thankfully, kills cancer cells) directly into his central nervous system. His little spine and developing brain. He will be conscious. He will feel the pain of the needle. But, too loopy to cry out, a single, large tear will run down his face. Then, mercifully, Justin will fall asleep for a bit, only to wake up to his favorite foods.
That last part isn’t so bad.
Tomorrow. For the last time, we will schedule another round of chemo. Tomorrow, we will have a date ready to announce for his last treatment!
If Justin does not relapse, that is. He will not be considered cured until March 2021. But we have to believe he will make it. We have to believe he will survive.
Tonight, Justin and I talked about what we think a “superhero” actually looks like. And we agree on this. A hero isn’t the strongest or the smartest or the fastest. A hero is one who gets knocked down and KEEPS GETTING UP.
We talked about how God has allowed and helped Justin to keep getting up.
We are endlessly grateful.
Thank you for continued prayer and support. Don’t miss the exciting series finale coming soon!
Been thinking a lot about this lately. Not really sure why, but it prompted me to resurrect this fictional story I wrote a few years ago. Thinking about how Jesus was able to forgive, even those who put him on a cross, moves my heart attitude to a really good, grateful place. Maybe it will for you, too. Please keep in mind this is historical fiction, a mere creation from my mind based on true events. But. I believe it is possible that events similar to this one may have actually occurred…
The Roman Soldier’s Wife (March 31, 2015)
It was evening when my husband came through the door. His face was not contorted with vexation, as was his usual greeting, but set in a weary, bewildered expression. His tunic and leather lappets were spattered considerably with blood.
I knew as much to quickly hush the children and hustle them into the back room. I kissed them good night and told them to lie very still.
Hurriedly, I began to prepare a meal for my husband. Wearing only a loincloth, he was sitting with his head in his hands. My eye caught sight of bloody clothes on the floor as I brought the wine and food.
I stood beside him ready to serve. He drank the wine but did not eat. He grunted at me, and I poured more wine. He gulped it quickly and, again, motioned for more. Staggering a bit, he disappeared into the other room. I did not move until I heard him breathing loudly. Then I cleaned up his untouched meal and shuddered as I got to work on the bloody clothes.
As I scrubbed vigorously, blood ran from the wool tunic over my fingers and down into the pail of water. I was no stranger to what my husband did as a soldier and I knew very well of what he was capable at home. I thought about what I had heard earlier that day while I was out in the court washing clothes with the other women. The Jews wanted to kill a man who claimed he was the Son of God, but Pontius Pilate said he couldn’t find any fault in him.
My thoughts were interrupted as my husband called out. I jumped and my heart was momentarily gripped in fear. I dreaded going to him but I knew it was better than him looking for me. When I reached the room, he was asleep, drenched in sweat, his face twisted in anguish. I waited. He called out again. His words were unintelligible, but he seemed to be calling for help.
I returned to my work and my thoughts. Could this be the blood of the Jewish man who claimed to be the Son of God? Had my husband assisted in putting him to death? I listened to him call out in his sleep again and wondered what it was that tormented him. My friends, in the court, today had also said that Pontius Pilate offered Barabbas, a murderer, and the Jewish man, Jesus, to the mercy of the crowd; one would be released and the other crucified. The Jews had chosen Barabbas to be released and Jesus to be crucified!
I was sitting on the floor by the window as I worked. The moon illuminated crimson stains on my husband’s leather lappets. Dipping a rag into the pail of water, I tried to wipe them clean. I had seen men hanging from crosses along the road and, always, I shielded my eyes. I felt a tug in my heart for this man, Jesus, who suffered the horrible fate of the cross and, it seemed to me, all very unfair. Tears ran down my face as I pondered it all.
I suddenly wished I had met this Jesus whose blood was, perhaps, on my fingers, now splashed on my tunic and still on my husband’s lappets. Not managing to get anything clean, I sat idle among the bloodstained clothes, crying softly, face turned toward the moonlight.
Lost in thought, I hadn’t noticed the figure looming over me. He took a step forward. Startled, I retreated into the corner and pulled my legs against my chest. I waited for the insults to come but there was only silence. I dared to look up. My husband’s eyes were wild, but not with rage and fury. He appeared like something I had never seen before. On his massive, muscular frame, that had struck fear in the heart of many, was the face of a helpless child.
Falling to his knees, my husband gently touched the bloody lappets that were lying abandoned on the floor. Then he looked into my eyes and spoke. He said that he had, indeed, participated in crucifying a man called Jesus. He spoke of the beating, scourging, mocking. His voice broke when he told of how they spat upon him. He said that through it all, Jesus never opened his mouth in defense or retribution.
His voice faltered again when he spoke of Jesus calling out to his Father, asking Him to forgive the very ones who had nailed him to a cross. Weighted by grief and laden with regret, my husband’s words seemed to pelt me like a rainstorm made of lead droplets.
My husband went on to say that all night he had dreamed of Jesus. He saw the blood, the nails, and the pain-filled, sad eyes of Jesus. He saw Jesus helpless and dying on the cross. But, still, in the dream, it was he who needed help and felt the need to call out for it repeatedly.
I listened in amazement. This hardened, cruel man, who, on more than one occasion, laughed as he recounted the torture of another at his own hands, was exposing emotions I didn’t think existed. This same man, who considered me a slave rather than his wife, was speaking to me as an equal and making eye contact for the very first time.
Something had changed. Something impossible now seemed not entirely too far from my grasp. Could there be life outside of constant fear and suffering? Was it possible for me to be truly loved? Could I forgive my husband? Again, I felt a tug in my heart towards this Jesus, a man I had never seen nor met.
My husband moved toward me and I, instinctively, shrank backward. Understanding the movement, he buried his face in my hair and, folding his huge body against the wall, he began to weep. Over and over, he repeated, me paenitet. Me paenitet. Me paenitet.
I felt waves of joyous shock emanating through me at this apparent softening occurring in my husband’s heart. Then my mind suddenly returned to the afternoon. While the other women and I were in the court doing wash as the children played, the sky had unexpectedly become very dark and the ground shook violently. Grabbing our children by their hands, we had left the wash and ran inside, terrified.
A thought that seemed to enter my mind instead of being formed by it made my heart seize then push hard against bone and flesh.
I put my arms around my husband’s trembling body. A sudden peace replaced the pounding in my heart as I understood truth. Just as dawn was approaching and first light streaming in, I lifted my husband’s face to mine and looked into his tear-filled eyes. I said one thing before we drifted off to sleep, together, on the floor as the sun was rising.
“Truly, Jesus was the Son of God.”
Please give! (Graphic by Joe Baber, fierce childhood cancer advocate)
Blood transfusions saved Justin’s life several times. So get your chocolates, roses and cards then give blood!
Please take a second to breathe out a prayer for these children and families across the world. It is my passion and pursuit to hold them close in my heart through prayer and hope in the One who can do immeasurably more than we can ask or think.
Due to the nice break in weather yesterday, I took Buddy and the boys to air out some at the dog park.
This was my first time at such a place.
What a strange, disgusting concept.
Let’s put a bunch of dogs in a fenced in area, so they can run around slobbering and sniffing each other’s butts, while their owners stand around and chat each other up.
So I smiled and said stuff like:
“How old is your dog?” (I don’t really care) and “Oh he’s a big one!” (That is a seriously ugly mug)
But the boys were happy, especially Michael. So I pretended to like it, too, even though I was innerly retching. This is a mother’s love and that’s about it because the whole dog scenario has not grown on me one iota.
Except this iconic-looking picture – boy and his dog – makes me smile because I know that in this moment Michael was perfectly at peace.
Yup. The good Lord works in mysterious ways.
Justin is having a bit of a more difficult time with this latest round of chemo as some of his dosages were increased. He is dealing with fatigue, leg pain and roller-coaster emotions.
Unfortunately, I am still vomiting everyday and we don’t know why. I will see my GI doctor Thursday. I’ve been tested for everything and then some.
Weird. But I think maybe it’s like this chest pain that moved itself in a couple years ago. There’s no medical explanation for it. It’s some kind of manifestation of sorrow that tears just can’t quite express.
Because on paper, everything looks very good. On paper, Justin is getting better.
And he is!
But the cost. The cost has been great. We are nearing the end (most hopefully). I have run with endurance, but may fall on the finish line.
I am the spider in Charlotte’s Web. Fading. Running myself down. But, I have a sick child and two stressed out siblings. Like Charlotte, somehow I gotta keep these babies safe!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26
Finding individual time with the boys is really tough, but once in a while we manage it.
Playing monopoly with Nicky. Watching the Sixers game with Michael. Justin did a little of each then konked out.
We also got out recently to spend some Christmas gift cards on lunch at Olive Garden and “Mary Poppins Returns.”
Yes, I used my surgery guilt to get the boys to go. But, they ended up enjoying it in spite of their no girlie movies campaign.
I am mostly recovered, but sadly eating a lousy three cheese fries made me sick. Three FRIES, not three orders. Without a gall bladder, the body is missing its fat digesting factory so I currently can’t eat cheese steaks and pepperoni pizza. But I also couldn’t walk around vomiting up my necrotic organ.
Anyway. This could turn out to be a really good remedy for my junk food addiction.
Justin will return to clinic February 1st to start his next round of chemo. We finally found a reasonably priced indoor pool so Justin can work on his dream of being on a swim team this summer, while also doing some much-needed physical therapy. God is good. Grace be with you, my friends.
Me: Justin, brush your teeth.
Justin (whiny voice): But I’m really tired, mom, can’t I just skip ONE TIME?
Me (already half-defeated): Justin. Robert. When is the last time you brushed?
Justin (drop dead serious and in a tone that suggested he had the RIGHT answer): Three to five days, mom.
The moment you can eat without vomiting after three weeks of said vomit and you bite into a warm pretzel, fresh from the Amish market. Oh yeah.