Justin had to have the needle changed today in the central line port that was placed in his chest last week. The nurses told us ahead of time that we may not want to watch and it was okay for us to leave.

I wasn’t leaving him.

It took myself, Jeff and 3 nurses to hold him down while he screamed his lungs out. They had to rip the original adhesive patch off first. His skin was so red and raw underneath. He screamed that it felt like a knife going into his stomach. I felt the tears burning my eyes. But I did not leave him.

He saw the needle before it pierced him. His screams did not even sound human. I had to look away, but I still held his arms back. And I did not leave him.

It was finally over and he was calm after he screamed at the nurses to get out. And they did. I felt the last food I’d eaten rising in my throat. I went to the elevator, blindly pushing buttons. I reached the first floor and headed to the exit. I went through a wrong door and set off some kind of alarm.

I kept going. I was finally outside, gulping in cold air. First time in nine days. I just wanted to walk and keep going. I made it halfway down the street and felt something really cold and wet on my feet.

It was then I realized I was still wearing only socks. I sat down on a stone wall. It was really cold but I didn’t care. I thought about trying to walk again. I thought about finding something to break. I thought about storming the cafeteria and opening the chocolate soft serve nozzle right into my mouth.

In the end, I went to the prayer room. I opened the door and went in, not really paying much attention to my surroundings. I tried to turn and run out when I saw him, but the heavy door slammed behind me.

He looked at me momentarily, then resumed speaking, half-singing in a language I didn’t understand. Over and over he fell to his face on a small rug. He was calling out to Allah. That much I understood.

I REALLY wanted to leave. 

Instead I got down on my knees and prayed. Except I prayed to Jesus. 

A few minutes later he left. But I had kind of forgotten about him anyway. I told Jesus my heart was failing. I told Him that I’m not strong enough and I need Him, need Him, need Him. I told him that I know this trial has a purpose, but my boy is only five and could He please, please ease Justin’s suffering? I prayed as many of the Psalms as I could remember.

Calm came over me and I thought of the words of Jesus in Scripture, “In this world you will have many troubles, but take heart! I have overcome the world.” (I don’t remember the reference right now.)

The disease and brokenness of the world is already overcome. Cancer is overcome. Justin’s suffering is overcome. It will all someday become undone at the throne of grace. I have to believe it. 

We just have to hold on. 

I am tossed about, pushed down, and thrown against the rocks. But my anchor holds.

My anchor is Jesus. 

 

Well it is day 8 in the hospital and day 6 of chemotherapy. Jeff went home to play in the snow and have dinner with Nicky and Michael.

I am still at Justin’s bedside. I have been able to eat, shower and sleep so that has helped immensely. I’m experiencing some pretty intense cabin fever. I have not been outdoors or anywhere outside his room besides the cafeteria and a few other rooms on the oncology floor.

It’s a small price to pay, though, for the ability to be here for Justin and take part in his care. All through the day, I’ve been encouraging Justin to stand and take steps.

We started out slow with standing to use the bathroom while holding the handrail. As his confidence grew, Justin continued to progress throughout the day. About five minutes ago, he walked to and from the bathroom, only holding my hands for balance. This is amazing progress! He said his feet hurt slightly, but he was able to bear his weight.

Of course I am thrilled and praising God for this answer to prayer. However, I know that true faith continues to praise and trust even when things don’t go the way we want them to. Real trust says, “your will be done,” just as Jesus said in “The Lord’s Prayer” and in the Garden of Gethsemane before He went to the cross.

This is the kind of soul bending faith to which I am being called. Will I still trust and praise if Justin’s condition takes a turn for the worse?

As you continue to pray for Justin, please add that my faith will stand the test, whatever may come. God doesn’t expect us to be perfect, but He does require that we persevere in faith until the end.

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James 1:12

“For you have need of endurance, so that when you have done the will of God you may receive what is promised.” Hebrews 10:36

“But the one who endures to the end will be saved.” Matthew 24:13

Grace be with you, my friends.

 

Justin woke up with a fairly good temperament and ate a big donut for breakfast.

But his mood quickly darkened when it was time for oral meds. He spit out medication, kicked and screamed, “I hate you!”

He is taking a very strong steroid, which, his doctor told us, will cause mood changes like anger and aggressive behavior.

We are trying to navigate his mood swings and defiance with love and sympathy. But we have to stay firm about enforcing what he needs to do.

I have been thinking about this. I think staying firm and expecting obedience will be especially important when we get home. We want to make him as comfortable as we can, but we can’t let him run the show. It wouldn’t be fair to his brothers, whom would expect the same treatment. Then…chaos.

This will inevitably result in a lot of tough calls going forward. Another layer of difficulty on top of many.

“I can do all things through Christ who strengthens me.” Philippians 4:13

After a successful day, Justin is tired, miserable and vomiting. I took a break for some emotional eating. No amount of vomit will keep me from Oreos.

I was hoping to have Nicky and Michael visit tomorrow, but they have colds. We can’t risk even a stuffy nose on the oncology floor. I miss them.

“From the end of the earth I will cry to You; when my heart faints, lead me to the rock that is higher than I.” Psalm 61:2

Justin was able to be unhooked from his IV fluids. We celebrated his newfound freedom by taking a walk down to the cafeteria for pancakes!

Of course Justin had to be carried. (He wanted nothing to do with a wheelchair) However, he did stand and take one step with our help!

This is progress! I know the prayers of many are continually going up on Justin’s behalf. I want you to know that God IS hearing us and is placing His healing hand on Justin.

God continues to sustain me as well. I met one of the other moms on the oncology floor today. Her four-year-old daughter, Claire, has a rare form of cancer and has had chemotherapy and radiation since she was diagnosed in September. Her mom and I sat and talked and shared.

She is more seasoned and was able to share good tips and strategies. It was like fresh air to talk with someone who “gets it” and can relate to what we are going through.

I asked my new friend if we could pray for Claire. She enthusiastically agreed! I’m asking you to mention her as well when you pray for Justin.

We planned  to connect again. We talked about perhaps getting Justin and Claire together in the playroom when they are both feeling up to it.

At the end of our conversation, she said something that has resonated with me all day. “From one cancer mom to another, it really does get better.”

Cancer mom. Now that’s a title I never expected to bear. Praying God gives me the grace to bear it well.

Justin is now experiencing a lot of fatigue. He slept on and off throughout the day yesterday and slept through the night. He is still fighting his oral meds and the “dreaded blood pressure cuff.” It’s difficult to for us and the nurses to navigate, but, at the same time, I admire him. The kid has spirit.

I told Justin that God is making him into a little warrior like David who brought down a giant with the help of God’s power. (My boys love that story. What boy doesn’t?!) Cancer is the giant we are facing. But we know God is bigger than cancer. And with God’s power, Justin will defeat his “giant.”

“For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8:38-39

God is bigger than cancer. He is bigger than all the giants.

The chemotherapy is really wiping Justin out. He slept most of the day, but he’s up now and out of bed sitting on the couch. He still looks tired and sad.

We are planning to play Monopoly Empire and watch the snow come down from our big hospital room windows. Hopefully that will cheer him up. 

Justin is experiencing severe leg pain so we had to increase his morphine. He tried to get up on his own when his brothers were here yesterday. I was happy to see him trying, but it broke my heart when his legs gave out. He is not able to stand or walk at all.

Our oncologist said this ability will return as the chemo continues to attack and kill the leukemia in his bone marrow. Justin will also have physical therapy each day.

If Justin stays fever free, we could go home as early as next Tuesday and continue chemo on an outpatient basis. If the fever returns, we will need to stay and have his blood regularly checked.

Justin is currently opening cards and gifts from his kindergarten class. I love that we are seeing him smile. 

Thank you for continued prayers. 

Justin’s frustration and my exhaustion is really setting in. He had tantrums all through the night about taking oral medication and getting his blood pressure taken. He screamed at all of us. And we just let him because he needs to do that right now.

The upside is that his yelling is really revealing his fighting spirit. He has always been extremely willful which can be difficult to parent. But, in this case, I consider it a blessing as he fights for his life instead of just what he wants for breakfast.

We have an amazing nurse who is brainstorming ways to make the oral medication taste better so he doesn’t dread it so much. Currently she is fetching chocolate syrup from the cafeteria to mix in. A child life specialist is coming by to start teaching him how to swallow a pill. Hopefully that will catch on quick.

I am reminding Justin of a verse he learned recently at school. I don’t think it’s any accident that it is Joshua 1:9. “Be strong and of good courage; be not afraid for the Lord thy God is with thee whithersoever  thou goest.” (KJV)

I may try to take a quick walk outside today. I know it’s freezing cold, but I haven’t breathed fresh air in 6 days.

Please continue to pray for us. Grace be with you, my friends.

 

Justin is sleeping. Jeff and I are sitting on the couch in the hospital room sharing a box of white cheddar cheezits (dinner?)

This is the first chance we’ve had for an actual conversation. We agree that when we think about what Justin is going through from his five-year-old point of view, it just breaks our hearts in half.

But then Jeff said, “This may be our only chance for a date in a long time.” A date. Sitting in a hospital beside our incredibly ill son eating cheese flavored crackers. The absurdity made me laugh.

Laughter through tears. Beautiful thing. Grace be with you, my friends.