Update on Day 777

Justin did really well today. He doesn’t FEEL well, but he handled IV placement and three, yes, three lumbar punctures very well. In the “childhood cancer world” pediatric cancer patients are often called warriors. Yes, he is.

Justin’s white blood cell count is again higher than his oncology team would like it to be. But his platelets are on the low side, and his liver toxicity screening again came back abnormal. They are not stopping chemo medications at this point, but we will need to watch him closely for signs of either issue becoming worse.

We talked about (hopefully) having one year of treatment to go. Justin said he will miss his favorite nurse (pictured below playing Hedbanz with Justin, a funny game similar to twenty questions) but will never, ever miss cancer. “Not in a million billion years, Mom.”

Agreed.

To Nicky and Michael: I see you, I love you, I’m doing my best for you.

Thank you for continued prayer and support.

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Clinic Today and My Most Recent Nervous Breakdown

Last night, I caught Justin in the tub with Gizmo, the cat, perched on the side patiently withstanding water being dribbled onto his head. His fur was wet and spiky-looking. Justin had been at this for a while.

“I’m giving him a mohawk, Mom!” Justin was smiling so huge, and the scene was so ridiculous. I had to crack up. It was such a typical, funny, little boy thing to do.

In these moments, I am reminded that, although we are going through some kind of layer of hell, and today he will be tortured and pumped full of poison, he is currently still full of life and mischief and possibilities.

For this, I am very grateful.

I thank you, Lord, with all my heart;
I sing praise to you before the gods.
I face your holy Temple, bow down, and praise your name because of your constant love and faithfulness, because you have shown that your name and your commands are supreme. You answered me when I called to you; with your strength you strengthened me. Psalm 138:1-3

C79F512B-A27D-4666-9F17-C4789C67B33FOn clinic today: Justin will have a lumbar puncture with an infusion of methotrexate directly through his spinal fluid to his central nervous system. He will also have an infusion of Vincristine, which continues to slowly deform his feet. He will start another course of steroids and pills that will make him into moody-sulky-weird-food-craving kid.

Of course this all depends on his blood counts and liver functions. Also, Justin has developed a roaring case of eczema. It’s a lot. It really is. But we are trusting God.

Thank you for continued prayer and support.

97C437B7-8631-48B1-8094-713293AD48D5On my ongoing war with dog smell: I cracked a little yesterday, opened windows, lit every candle in the house, roasted a chicken because…well…that smells better than dog pee, and, finally, hauled out the Hoover, shampooed the carpets and ate a pack of Oreos.

Day 772

CF91CC4F-4F9A-431E-A317-EC8ADCECC4A5I asked Justin if he is having a good time. I don’t remember exactly what he said, but I was able to capture this image.

We are heading home sometime today, and will start another intense cycle of chemotherapy on Wednesday. After this next round, we have just about exactly one year of treatment to go.

71839842-E1A0-4FAF-8800-10EE35C14C31A very special thank you to Mike and Rachel for keeping our puppy. I’ve received detailed updates, with pictures, on Buddy’s activities. Rach is trying to convert me into one of THOSE kind of pet owners.

Meanwhile, I’m just trying to keep the dang thing alive for my boys. Grace be with you, my friends.

 

Behind the Scenes

We are on mini holiday in the Pocono Mountains. Now most of the time I post our fun, pretty pictures.

But, here, I embrace and share reality.

Pictured left to right: Jeff pretends to be asleep in hopes of somehow avoiding hotel room parenting (very possibly the worst kind), warning graphic image: this is what I look like in the morning, Nicky takes our coffee order, Jeff checks into work, Jeff breaks up a fist fight, the kids rest out Justin’s morning sickness with him and my economical mom hack breakfast buffet.

See you later.

Cancer Mom Confessions

EF008A41-BBCB-4663-A259-6B7AEC333800Yesterday I got to hang out, I mean teach, some of my favorite high school seniors. We somehow got talking about what it’s REALLY like to have kids.

I told them I often think about getting in the car by myself and driving away. Very, very far away.

I was kidding (not really), of course, and quickly added: I’m not the best person to weigh in on this subject right now, okay! I have a sick child and a huge-ridiculously-cute-but-dumb-three-month-old-puppy-who’s-already-stronger-than-me, who I only purchased to bring joy to the sick child and his stressed out siblings.

Homeschooling and housebreaking. Trying to beat cancer and the smell of wet dog.

Then the dog gets a shot and has some weird hyperactive reaction and you find yourself sitting up all night with him so he’ll stop waking everyone up, running around the house barking at walls. This is not for the faint of heart.

Only for those, perhaps, with more heart than brains.

 

 

Unlimited Light

EC166FE2-6DD0-424E-9441-7840EF287104Justin still sleeps with me every night.

“Mommy, can you please leave the light on for me? If I wake up in the night, I am afraid of the dark.”

”Okay, sure.”

”Someday when I die, I will go to heaven with God. And He has unlimited light!”

”That’s right, baby, that’s right.”

Someday when I am already gone, please.

I love you, O Lord, my strength. Psalm 18:1 

 

 

 

Day 752–A Photo Gallery and A Question Answered

Justin is feeling his usual ups and downs since the start of another round of chemo. One minute he’s a normal kid; the next minute he is nauseous, wiped out on the couch or having a roid rage tantrum.

Recently I have been asked this question several times: why is Justin’s treatment so LONG? Leukemia is called a “liquid tumor” because it’s not localized and less complicated to pinpoint. Even after many rounds of chemo, tiny leukemia cells hide undetectable in the blood, bone marrow, spinal fluid and testicles. Long-term chemotherapy is a “mopping up” of these cells, while also acting as a preventative for new and more aggressive cells to form. This is my understanding based on discussions with Justin’s oncology team as well as my own research. If all goes according to plan, we have 13 months of treatment to go.

Here in the photos, we are making time for Nicky and Michael, which is always a challenge to find. Jeff and Michael are in Philadelphia for the Eagles parade while I crash Nicky’s recess.

Justin tries a Big Mac for the first time to satisfy a steroid craving and TV-commercial-induced-curiosity. Buddy loves to play with the boys, and has turned out to be a good fit for us. Even though we should probably now replace the living room carpet, and I am gagging over the smell of wet dog. Gross.

Thank you for continued support and prayer. God is taking good care of us.

Day 748

1BD751A3-DB0C-4EDB-BB67-4949994D43C3“Mommy, what does it feel like to die?”

Despite attempts to drown it out by mentally quoting as many scripture verses and song lyrics I could think of, I didn’t sleep much last night because of this haunting question. And when sleep finally came, I was stuck in a place where Justin was lost. I kept looking and looking, but could not find him.

“Um. Well. I don’t know. No one really knows. But I don’t think it matters very much if you are a child of God because He will handle it.”

This answer seemed to satisfy him.

I didn’t ask Justin why he was asking. I know why. He’s brought it up before. Experiencing a life-threatening illness has given him some kind of curiosity or sensitivity or heightened awareness of his own mortality. Something like that.

So I don’t freak out or give false guarantees. I just try to validate his questions by answering them the best I can.

And the dream? Well, experiencing your child going through a life-threatening illness, I think, can definitely mess with the subconscious. I try not to give it too much credit. It’s just a dream. It doesn’t need to be any bigger than that.

Things always seem worse at night. But in the light of a new day, everything seems…better. More manageable. Less scary. Definitely less muddled by fatigue. Clearer. Less complicated.

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. Lamentations 3:22-23

The reality is that Justin is feeling sick today, and, in pain as well, but he is here next to me explaining a video game that I totally don’t get. And I am drinking Diet Coke to stay awake and pretending to listen.

We are okay. God is with us.

2342FF24-7137-4E53-8DA8-2FD00CC609B8Thank you for continued support, encouraging comments and prayers. Grace be with you, my friends.

A Very Present Help

A day at clinic in photos: Another round of chemo. Justin’s support team. A playroom with IV poles and bags of poison. Me trying to make it all fun or, at least, just more tolerable. A look at Justin the day after clinic. And Buddy being a faithful nap friend.

Not pictured: me and two nurses holding Justin down as he was repeatedly stuck with a needle for his IV placement. Also not pictured: me sending Luke and Michael out of the room to save them from being potentially traumatized; then pleading with God for help while we took a necessary break. Also not pictured: the Holy Spirit, who, indeed, calmed Justin and worked through myself and Justin’s nurse to get the job done.

God is our refuge and strength, a very present help in trouble. Psalm 46:1