Can’t celebrate properly without a cake. I did pick out the egg shells. Well, most of them.

Today, I’m not only aware of grace measured out for Justin. But also his two brothers, who have journeyed along a parallel path which was, indeed, less treacherous but certainly not without bumps. They have all carried burdens far outweighing their own size. And they have carried them well.

Our little cake isn’t fancy or perfect. It was just put together with what was on hand. But, to Justin, it’s pretty amazing because he made it.

Grateful. Today it’s tangible. I can hold it in my hand.

All praise, honor and glory to God, our Father, and our Savior, Jesus Christ. Grace be with you, my friends.

Picture Commentary and Update on A Wish 

CIPN (chemo induced peripheral neuropathy). Toe walking, foot pain, leg weakness. Justin’s custom-designed-blue camo-lime-green-flame-strap-heel-cord-stretching-boots were ready today. The goal is to wear them six hours a day while sleeping. We will start with an hour a day during screen time, slowly increasing length of time, as well as progressively tightening the straps for a deeper stretch. Justin said, all big blue eyes, “Mommy, will I still be able to play good at baseball?”

He will continue physical therapy each week.

This week marks our anniversary of ONE YEAR IN REMISSION!!! We have some fun things planned Friday night to celebrate.

YoGo Factory treats for earning points in our homeschool classroom. We teachers like to call this a “reward” but, let’s be honest, we are bribing them and there’s no way around it.

Make-A-Wish granted Justin’s wish for a trip to Legoland in Florida and threw in Disney World, too. Why not. We are looking forward to our trip this coming May. Except I have to lose ten pounds of ice cream before I can get shorts on.

Oh and the boots are nothing but COOL in our house. Not weird. Not strange. Not funny. Just super cool. Like we all wish we had a pair. Really proud of Nicky, who caught on quick. I’m working on Michael. Although, to be fair, Nicky DID say Justin looked like a veteran from World War II. But that was actually fine because Nicky somehow made that sound like a good thing.

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

The LORD is good, A stronghold in the day of trouble, And He knows those who take refuge in Him. Nahum 1:7

I have a secret.

Sometimes I just watch you sleep. And I break into pieces of gratitude because I get to still have you soft and warm and breathing.

There’s a bond between parent and child. There’s a bond between parent and sick child. I don’t propose one is greater than the other but, certainly, there is a difference.

Both child and sick child rely on parent. But the sick child knows it. There’s no pretense of autonomy. Just a vulnerable dependence.

There is love for a child but there is love and desperate hope for the sick child. There is the constant care-taking and desperate hope again because you also see it in the face of your child.

There is something quite difficult to explain about the chronic pain. It’s there and you hate it. But you mostly hate it because you can’t for the ever-loving life of you make it stop. You can’t take it onto yourself. And you can never ever erase the image of those big eyes asking a question that defines the most soul-splitting of moments. Why are you letting this happen, mama? Because you’re mom or you’re dad and you’re supposed to fix everything. Only you can’t fix this.

So all of that makes the bond different. And makes the fear of loss different. And, I achingly imagine, it makes the loss entirely unbearable.

It’s all too much until I turn to the One who will quiet us by his love.

The LORD your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing. Zephaniah 3:17. 

Redefining multi-task. Taking care not to move too much and wake the beast who can’t help he is on enough steroids for a large horse. While pasting a smile on my face and maybe letting Michael win Uno. Maybe there are exceptions.

At the local pizza shop for the umpteenth time. Chemo cravings. There’s no fighting them. There’s only succumbing entirely or no peace for anyone. You try frozen pizza to be frugal and all. It’s doesn’t taste the same. Nothing tastes the same. This changes without warning. One week there are meatballs every day, the next week meatballs are repulsive.

Justin joins his class for “100 day Olympics.” He laughs and has fun and all is normal again. For a few hours.

Lunch box love notes to Nicky and Michael. Don’t underestimate the power of encouragement stuck to a sandwich even if you’re told how utterly embarrassing you are. It matters. When your little brother has cancer, it matters more.

But God will never forget the needy;
the hope of the afflicted will never perish. Psalm 9:18

Reminders gently cutting across soul spans and outliving the farthest star. Grace be with you, my friends.

Morning and afternoon spent at clinic supporting Justin as he was weighed, examined, stuck with a needle and infused with chemicals. Tried, as usual, to make the experience positive, this time engaging in board games, enjoying a visit from “Gee-gom” and indulging in a post-chemo ice cream cone.

Please make it extra big, Chick-Fil-A employee, my kid just had chemo.

And never without God going before us; prayer in the car with my eyes open because I’m driving. And scripture that I hope helps Justin as much as it helps me. Today it was simple but altogether adequate. Philippians 4:13.

I can do all things through Christ who strengthens me.

You have to try for positive and even a little fun because some of the memories are just plain bad.

Then straight to Nicky’s basketball game and finding something for dinner and playing hide-and-seek with Michael. Because siblings need attention too. So even if you’re emotionally and physically drained, you go. And you play. Because  they tell you Justin doesn’t ever get punished and Justin gets to eat whatever he wants. And, of course, it’s not entirely true because kids exaggerate.

But it’s a little bit true.

It’s all just layers piled on top of an already undoubtedly intricate plight. But my cancer patient is here with me. And, for that, I don’t have to be reminded to be very grateful. Because when I think about those who  have lost, my chest starts to hurt in that place my doctor calls stress.

But I think it’s a cracked heart.

Still too many white blood cells. Justin’s chemo dosage was again increased. Thank you for following, praying and, as always, grace be with you.

Today, an orthopedist met with us and made “removable casts” on both Justin’s legs, from toes to knee, which will later be made into splints or “boots”.

The white layer made today will be covered with a camouflage top layer, which Justin was able to choose. He was even able to “design” the strap which will pull his toes upward as he sleeps. Black with a streak of fire, naturally.

After the casting, Justin was ready for stretches and a game of basketball with his therapist. He smiled and high-fived her after adding his points to a winning score.

Today, I am especially grateful to live thirty minutes from one of the country’s top children’s hospitals and for our health coverage as well. Both easily taken for granted, but critical to Justin’s survival and well-being as he continues treatment for ALL (acute lymphoblastic leukemia) and CIPN (chemotherapy induced peripheral neuropathy).

Yes, things get all hard edges and murky and muddy or even just weird sometimes. Like night boots.

But we are still loved, unabandoned and not without hope. And, in that, I find strength to get through the next surgery, next spinal tap, next IV placement, next day, next hour, next minute. Strength to battle Justin over wearing these weird things every night because the “coolness” factor will wear off and then they’ll just be plain annoying.

We have just arrived at CHOP Virtua where Justin attends physical therapy. He will see an orthopedic specialist today to be fitted for a special boot worn at night to stretch his heel cord. The rash on his face is a side effect of methotrexate.

Me: Jus, how do you feel today? Do you feel like this one? How about this one?

It’s sometimes hard for six-year-olds to articulate their feelings. I am showing him emojis. Sad, happy, scared.

Justin: No, none of THOSE. I feel like this. He reaches over and taps the cheeseburger.

That’s right, baby, hold on to that sense of humor for dear life.

This is Justin pressing on, working hard at physical therapy, and being rewarded with an intense Jenga or Candyland match.

Justin is very competitive, which always makes his therapist laugh. And, much to my approval, she does NOT let him win. She often pushes him by making therapy into a race or competition with her. We want to nurture that fighting spirit and channel it against cancer.

This coming week, Justin will be fitted for “boots” to be worn while he is sleeping to stretch his legs. He is experiencing what is known as chemotherapy-induced peripheral neuropathy, which causes foot and ankle weakness, heel cord tightening and lack of reflexes.

Sports are important to Justin. He’s already looking forward to baseball season and hopefully being able to play “in every game, mom!” I’m doing everything I can to push that outcome, but knowing it all rests in the hands of God.

We press on in the strength and grace of our Lord. Grace be with you, my friends.

Since you are my rock and my fortress,
for the sake of your name lead and guide me. Keep me free from the trap that is set for me, for you are my refuge. Into your hands I commit my spirit; deliver me, Lord, my faithful God. Psalm 31:3-5

The day passed in varying grueling layers of pain, fear, exhaustion and desperate hope. More blood draws, more screaming, more drugs to dull pain and lull to sleep.

6PM. When the doctor introduced himself as an oncologist and asked to speak with us in another room, I knew our lives were about to change. He talked and talked. Blood cells very concerning. Leukemia. Bone marrow extraction. I didn’t cry. I just looked at his hands. His gold wedding band. I needed something to focus on. A long needle would pierce Justin’s hip bone and take out a tiny piece of bone as well as his marrow. This would give definitive results. This would happen first thing the next morning.

I spent the night in Justin’s hospitable bed by his side. His fever had risen to a frightening 104 degrees and drops of blood stained the blanket. My clothes. His nose was bleeding. I tried to make him as comfortable as possible. I demanded pain meds. I sang softly in his ear. “Jesus loves me, this I know.”

8AM. I stayed in the bed as they wheeled him to surgery. I stayed while they administered anesthesia. I stayed until he was asleep.

We were escorted to a nearby room to wait. I hadn’t slept in thirty-six hours. My mom had brought a change of clothes but I hadn’t bothered with that yet. My dad arrived with cheese steaks and I managed a few bites.

We were told the procedure went well. Justin was awake. We went back to his room. His pain under control, Justin’s anger turned to despondence. All he wanted to do was play a game on Jeff’s phone and we let him. All day.

7PM. We were led to another conference room. I excused myself from details I’d never remember anyway and walked out. I found a corner by myself and cried and cried and cried. Then I wiped my face and stood up, resolute with an insane amount of God-given courage, and walked back to my crucible. This was the night I’d begin to experience the deepest kind of anguish paired with the sweetest kind of Divine nearness. I thought about what a friend had said to me earlier that day in the lobby. “You need to blog this.”

I took a deep breath and began. Acute Leukemia. I have no other words. January 17, 2016. One year ago today. 

 Return unto thy rest, O my soul; for the Lord hath dealt bountifully with thee. For thou hast delivered my soul from death, mine eyes from tears, and my feet from falling. Psalm 116:7-8

After surgery

Playing War

Visitors to play!

Feeling sad

Feeling sick