Two Years Ago Today

BA0EB57B-183B-4E09-88F6-02CBEF30D864Two years ago, today, I sat next to a bed at Children’s Hospital of Philadelphia, sleep-deprived and in shock, while my five-year-old son writhed in pain, bled profusely from his nose, burned with fever and screamed at everyone.

His eyes were lit with fear and a desperate plea. “Fix it, mommy!” But I couldn’t fix anything.

I refused to let this thought enter my mind, but I knew it hovered way too close, like someone reading over my shoulder. “He is dying.”

And then came the word that sent me dry-heaving into a nearby trash can and drenching my dirty, blood-stained t-shirt in tears. Cancer.

I heard other words too. Like treatable and Chemotherapy and central chest line. But, mostly, all my brain did was call to mind what I knew about cancer. People die from it. 

E842B3EE-7234-4529-9E30-D6F32750BBA8But Justin didn’t die. He is very alive and fairly well and playing Minecraft and eating banana bread and, very shortly, going to fight me over doing his reading lesson.

This is modern medicine and good doctors and dedicated parents. Above all, this is our Sovereign Lord preserving the life of a child for His good purpose. But we have gone by way of the valley of the shadow of death, for sure.

If God had ordained a different outcome and, still, He could, would I be saying anything different? The truth is, I can’t know for sure. But that isn’t the test I was given.

ACA45421-D027-4047-9175-4D2000DEBAD5I didn’t lose my child, but I have watched him suffer much. And we still have many hard months to come.

But God is here and He is good and His love does not fail.

Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? As it is written, For thy sake we are killed all the day long; we are accounted as sheep for the slaughter. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord. Romans 8:35-39

 

 

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Sledding, Steroids and a Killer Verb

Today I was thrilled Justin felt well enough to join his class at school for a fun outing of sledding and hot chocolate. He was not able to attend fall or Christmas activities.

We were both happy and smiling.

Then.

About an hour later, it was time to finish his school work for the day.

Me: Give me an example of a verb in a sentence.

Justin: Justin kills mommy.

Well, he did use his verb correctly. This is called a drastic mood swing of a child on way too many steroids. And, one, who apparently doesn’t appreciate a stellar grammar lesson.

I’m gonna choose to focus on the successful sledding portion of the day while I continue laying siege to this mountain of laundry. Grace be with you, my friends.

 

Chemotherapy, Rollercoasters and Reflections of Italian Opera on Day 717

72D88984-FD38-4590-89A3-147295A5A69EDespite all the usual nasty-new-cycle-of-chemo-side-effects, Justin recently made it to gym class at school and out to sled with his brothers and friends. We are very grateful for this and continue to pray for ENDURANCE (image from the Bible app).

In just about a week, we will have been on this trip for two years. This is a rollercoaster with mind-numbing, soul-bending climbs and dips and turns and drops. But, unlike most thrill rides, we move at a sedated pace which regresses and stops and even gets stuck in one place. Then we pick ourselves up and inch forward again, ever so slowly, because time has done that painful prolonged thing it does when you are looking forward to a certain event. In this case, the end of a necessary evil. Chemotherapy.

Stress has taken the form of a pain that moves from my chest to behind my left eye until my whole head feels like it’s in one of those clamp tool things in my Pop-Pop’s garage that you had to crank the handle to use. And me and my brothers used to play with it while he smoked cigars and listened to Italian opera really, really loud. I couldn’t understand the words, but I could tell it was very deep stuff.

I know everyone is watching football playoffs but maybe also take a minute to pray. We have come this far by His grace.

Rebel Cancer Mom

D3179ABE-7C3F-4A9F-ADFF-4A4B619647F7Pediatric Cancer is doing its worst to make me into a slave. To run my life. To overtake my emotions. To invade every thought. To tell me what I can and cannot do. To take my energy and steal my joy. To weaken my faith and shut me up about hope.

But I refuse to conform.

Today is day 707 and the start of another round of chemotherapy for my tired, sick, depressed seven-year-old. We are driving to clinic in a pervading mood so thick and heavy with his fear I had to put the air conditioning on just to breathe.

Yet. I can still say this. God is good and Jesus is more than worth it.

I pray these words are used to reach the dark places, deep cracks and wide spaces.

So Jesus said to the Jews who had believed him, “If you abide in my word, you are truly my disciples, and you will know the truth, and the truth will set you free.” John 8:31-32

 

 

 

Cancer Mom Christmas Confession

We held lit candles and sang O Holy Light at our church’s Christmas Eve service.  Justin slept on my lap.

Just a short while later, he sleepily asked about taking his pills. Not tonight, baby, not tonight.

Justin spent today feeling well for a change. It was, perhaps, the best gift I could give.

Merry Christmas and may Christ, our blessed hope, be magnified.

The people walking in darkness
have seen a great light;
on those living in the land of deep darkness a light has dawned.

For to us a child is born,
to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the greatness of his government and peace there will be no end. Isaiah 9:2,6-7a

 

Christmas Snippets

Programs, Christmas cards, cookie making and more. Somehow we are juggling it all with a child, who’s very frequently ill and moody.

I am directing our Sunday School Christmas program this coming weekend like some kind of lunatic. But somehow God has been making extra hours. Also it’s a welcomed distraction.

May Christ, our blessed hope, be glorified.

 

Cancer Mom Confessions

We are one week into a new chemotherapy cycle. Justin has been up and down, but mostly down.

26BA6644-C91B-4518-963B-821868A164CDThe amazing Anne cooked for us again tonight. She also brought lovely brownie things with icing on top, which, obviously will not survive the night.

Every once in a while, when I think about what chemo is, I omit one or two of Justin’s pills. It’s not enough to make any difference, but gives me some kind of satisfaction that I can’t really explain.

A very, very special thank you to Martin for cleaning the worst bathroom on the east coast. To me, this is better than diamonds.

Sometimes I want to pull the good glasses from the cupboard, one by one, and smash them against my red dining room wall. But then I think about the clean up.

Thank you for continued support and prayers. Grace be with you, my friends.

 

Day 679 (continued)

 

Justin’s body has recovered from its weary plunge into immunodeficiency. All his blood counts are stable, and his liver is functioning well.

This is great news! Except it means he started copious amounts of chemotherapy drugs again.

Justin handled IV placement, fasting, sedation, lumbar puncture and chemo infusion like a champion. I saw mental and emotional strength today; very unlike a seven-year-old, and something I haven’t seen before. He is getting stronger.

Justin is currently not feeling well, as I expected. I also expect steroid-induced mood swings and food cravings starting tomorrow. However unpleasant and difficult, this is familiar territory.

I took a bad headache on our way home but am coming through it now. A very special thank you to Anne for feeding my boys.

We are being carried. Your faithful prayers have been answered and your words continue to encourage.

God is with us still. His grace reaches into the place where there is hope but so much weariness. He cares enough to go there and hold me up.

Please continue along with us, as we are but halfway through. The road stretches long ahead of me, and I cannot see the end. Grace be with you, my friends.