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

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.

God’s grace reaches into places where there is hope but so much weariness. He cares enough to go there and hold us up.

Please continue along with us, as we are but halfway through. The road stretches long ahead, and I cannot see the end.

I recently searched my house, top to bottom, for a set of handmade advent ornaments that mysteriously went missing. It was Michael who finally found them. He joined the search after he walked in on me sitting on the floor wailing like a baby amid boxes of Christmas decorations.

The experience reminded me of a story told by Jesus.

Or suppose a woman has ten silver coins and loses one. Doesn’t she light a lamp, sweep the house and search carefully until she finds it? And when she finds it, she calls her friends and neighbors together and says, ‘Rejoice with me; I have found my lost coin.’ In the same way, I tell you, there is rejoicing in the presence of the angels of God over one sinner who repents. Luke 15:8-10

I get lost sometimes. Lost in the mundane. Lost in my head. Lost in forgetting to focus on the positive. Lost in day after day after day of my child’s pain. Lost in forgetting I am loved by the God of the universe.

And then I lose it over Christmas ornaments.

Jesus doesn’t let me stay lost.

He gets down into the dusty places and finds me.

In an hour, I’ll go see Nicky and Michael in their school program. I will put a smile on my face to shield a heart that aches for cancer moms who lost their babies and cancer moms still heavy in the struggle and my Justin sick and forlorn on the couch.

Hold the smile in place. Keep steady.

”I have to start my chemo again so I won’t die.”

”Why are you saying that?”

”It’s okay, mom. If I die, I’ll just go to heaven.”

Is this fear talking? Fatigue? I honestly don’t know. I asked all the “right” questions and said all the “right” things. But despite all my best Mom instincts and efforts, I still can’t REALLY know what exactly goes on in the minds of my children.

Hold the smile in place. Keep steady.

But please don’t ask me how I’m doing today. I can’t quite explain it and I’m too exhausted to try.

We are very, very grateful for your support.

Justin is tired. I am tired. But we are pressing on.

I originally said he would be checked again this Wednesday. But after a lengthy conversation with one of Justin’s doctors, the plan has changed.

His liver functions have improved! So his team wanted to check to see if his blood counts are stable enough to start him once again on chemotherapy this Wednesday.

But I said no. It can wait one more week. His body needs to rest.

He is already scheduled for a spinal and chemo infusion on the 29th. But the handfuls of chemo pills can wait until then.

His doctor, who is my favorite, agreed.

So rest he shall. I am keeping him home and away from germs because he has no immunity right now. He will rest. And I will try to disguise foods loaded with vitamins.

He has not gone out except to clinic in about two weeks. Today we visited a friend at his house, and enjoyed playing with his impressive Thomas the Train  collection.

We set up Minecraft PC and he’s been playing online with friends while FaceTiming. It’s a decent temporary substitute for actually playing with other kids.

I write from a friend’s kitchen table with a hot cup of tea and sun streaming through a picture window. I am listening to Justin play a game with his friend.

Everything is going to be okay. I will be fat and gray, but my baby will be okay.

Lift up your eyes and look to the heavens:
Who created all these?
He who brings out the starry host one by one and calls forth each of them by name.
Because of his great power and mighty strength, not one of them is missing. Isaiah 40:26

I have this recurring dream that I am about to go on stage only to realize I haven’t learned my lines. But I step out anyway, make them up as I go along and somehow it all works out.

I wasn’t expecting to parent a child with cancer. I step out in faith each day not really knowing what I’m supposed to say or do.

Justin’s white blood cell count is still crashing, but red cells and platelets are showing signs of improvement.

We are waiting on another liver toxicity screening. Chemotherapy meds are still on hold, and Justin will have another CBC next Wednesday.

At this point, Justin is neutropenic, highly susceptible to infection and communicable illnesses. We’ll have to keep him home and away from anyone who’s recently been sick.

I am very grateful for the incoming stream of visitors, messages, encouraging comments and dinners that I did not have to cook. Except for being thankful and a moment of good cheer wandering through the Christmas section at Target, I mostly just feel kind of numb. I don’t really know what that means for sure, but I know I am definitely tired.

Recently these verses jumped off the page and got themselves stuck in my brain:

Now while he [Jesus] was in Jerusalem at the Passover Festival, many people saw the signs he was performing and believed in his name. But Jesus would not entrust himself to them, for he knew all people. He did not need any testimony about mankind, for he knew what was in each person. John 2:23-25

Self-talk can be a really good thing. Today I have to keep telling myself…you are known by Jesus. You are known. You are KNOWN.

So I guess I’ll just keep stepping out there, not knowing my lines, but knowing I am known.

Justin continues to downward spiral this month. Extreme fatigue, headache and a ghost-white pallor caused me to bring him into clinic for an extra check up. Sure enough, he was in need of a blood transfusion to boost his counts. He won’t resume chemotherapy until this is resolved and his blood counts as well as liver is stable and able to handle it.

Justin’s temperature and blood pressure are both being monitored as he receives some kind person’s blood. Please remember blood saves lives, so please give if you are able!

I am trying to make this as “fun” as possible. Justin and his pal, Benjamin, have been killing time together playing Wii and are now watching Star Wars while cleaning out the patient snack pantry.

Not exactly sure why Justin’s body is suddenly reacting negatively to maintenance chemo. But I know God is faithful.

 

Justin is sick and miserable on steroids.  He missed a school field trip Friday, a birthday party Saturday, Sunday school and Christmas program rehearsal today.

These are all things he’d be gladly doing if he were well.

He isn’t well.

This cuts me day after day after day.

The suffering. The missing his childhood.

Every little piece of normalcy stripped away.

Nearly every part of me having a life outside of pediatric cancer is gone. What I still hold onto comes with a price.

So I keep reminding myself. Justin is alive. He is alive. He is alive.

Friday he bled and bled and bled. I held him and caught his blood for nearly an hour.

Leukemia. Blood cancer.

I am burnt out. I am always burnt out now. After 656 days, I don’t remember what not being burnt out feels like.

Yet.

I know that Light is here. I can’t see it. I can’t feel it. I can’t touch it.

I just believe.

And, because of this, I know that even if we should be wrung out to the point of death, we will wake in the Light.

In him was life, and the life was the light of men. The light shines in the darkness, and the darkness has not overcome it. John 1:4-5

 

 

 

Justin’s liver toxicity screening came back showing elevated bilirubin, but, at this point, not dangerously. Except for the Vincristine infusion yesterday, his team is stopping all chemo until this resolves. I also got a “good catch, mom” and “continue to trust your instincts” which are welcomed compliments when you’re continually second guessing yourself over every little symptom.

Justin is having a rough time today recovering from a 100% Vincristine infusion, cranked up from 50 then 75%. We had cut it down to give his feet a break from neuropathy pain and heel cord shortening, but it’s too risky concerning relapse to stay at a lower dosage. Painful, messed up feet v. cancer relapse. The choice is obvious.

Except for steroids, Justin won’t take any oral chemo meds until his platelets stabilize and liver screening comes back normal. I guess it’s a break of sorts, but he’s still feeling “really sick and I just don’t feel good, mom.”

Thank you for continued prayer and support.

Tomorrow we start another round of chemo. So tonight it was all about fun and friends…