Day 1395 and a Survivorship Program

Justin remains cancer-free! We met with my favorite member of his oncology team yesterday. She explained his long-term trajectory now that he is one year off treatment!

Justin has one more year of monthly exams and blood draws before he will move into the survivorship program. This is like a dream come true. He will continue to be followed by doctors who understand late effects of chemotherapy and know how to treat them. Children’s Hospital of Philadelphia is the first hospital to pioneer a children’s survivorship program!

This is amazing, wonderful, super-duper news and a result of the research and work of many extremely dedicated, tireless, caring doctors and childhood cancer advocates.

This is the result of a faithful God who does not leave or fail us. He works through the hearts and minds of people to give us medicine, treatment, good hospitals, hope.

To all those out there in the struggle whether it be cancer, loss, pain or fear: hold onto God and hold onto hope.

Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. Romans 5:1-5

 

The Day My Heart Stops


I don’t mean the muscle heart. That keeps droning on, pumping blood and all. I mean my thought heart.

Because today they will check Justin’s blood. And, for a leukemia patient, that is like being scanned for the return of a tumor.

I will look relatively normal today. Brush my teeth, do the dishes, spend time with Justin. I will even drive him to the clinic.

But don’t ask me to make any big decisions or help Nicky with his Algebra homework (just kidding I can’t do that anyway).

My thoughts will be mostly focused on one thing. Healthy blood in our now nine-year-old son. Although I have been doing this dance for four years now, the struggle still gets real.

What can I say. God is in control and God is good. Thank you for continued support and prayer.

 

Day 1361 – Life after Chemo Photo Gallery

 

6CB11C58-F00F-40F0-B474-86258C2751C5This week, Justin will present his first oral book report/biography research project. I think Justin is drawn to people who are a little touched in the head. 

Today, Justin played his first ever basketball game in a school intramural program. You could not have guessed this kid was, at one time, deathly ill, unable to walk, on chemotherapy for three years and sick and miserable most of that time. But not today, baby, not today!

We have our bumps in the road and tired days, but Justin continues to excel in 4th grade. I spent the first few months having anxiety when he cried every morning about going to school and spent a lot of time going to the nurse’s office. But I never gave up on gently pushing him forward. I know God was gently pushing ME when I felt weak.

And somewhere along the way, Justin changed from being a patient, a cause, a survivor.

He became a kid again. 

And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. 1 Peter 5:10

 

 

 

Justin’s Remission Party Photo Gallery!

We are told if Justin is still in remission by the fifth year, he will be considered cured. This month marks 4 years since his leukemia diagnosis. Justin, remarkably, went into remission about 30 days after diagnosis and is still going strong. Today, we took a few minutes to thank God and celebrate with his fourth grade classmates, teacher and brothers. A couple of his friends remembered to wear t-shirts that were made for their kindergarten class the year Justin got sick. They still have them – so cool! Orange for leukemia awareness. Thank you for continued prayer and support! 

Day 1339

627E2530-7767-4ED7-9C86-6796B62D42BFAside from stable blood counts and a good physical exam, which both indicate remission, we had a little breakthrough today at clinic! For the first time in 4 years, Justin’s legs popped when the little hammer came out. He has regained some of his reflexes! His legs are slowly but surely improving. We were so excited to see this happen.

8DD89C26-8FAA-4231-B445-AAED1D1633B9After a much-needed break, Justin will resume physical therapy. We continue to hope and pray for full restoration of his legs and feet. However, we remember, with deep gratitude, how far he has come. When Justin was first diagnosed, he completely lost his ability to walk. He did not take steps on his own for several months. It has been an uphill climb since then. Here, he is pictured with his flag football team, where it is sometimes a challenge for him to keep up, but overall Justin does very well! 

Speaking of the diagnoses, we received this punch-in-the-guts-life-altering news four years ago this week. This coming Thursday, Justin’s teacher and I have collaborated on a special celebration with his classmates at school to commemorate this milestone. Four years in remission! 

8B8BB1A1-94E9-4B93-BD2D-3542795F6836Recently, Justin mentioned that he missed the attention he received while on treatment. It occurred to me that, of course, this must be a difficult transition for kids. To go from being the center of attention and the kid everyone is nice to because of cancer, to blending into normalcy; a place where you don’t get ice cream every time you want it and, suddenly, you are sometimes having rude exchanges with the same kids who made you get well cards. Hey, we get this. Kids are kids. 

Thinking about this inspired me to plan this little lunch party to enjoy with his friends and teacher. Not that I think it’s a brilliant idea to prolong the idea of special treatment. But after being a mom for almost fourteen years, I’ve learned that kids need gradual transitions with any kind of big change.

Stayed tuned for pictures and commentary on this upcoming event and please join us in prayer as we will also spend time thanking God for his continued grace, love and healing.

B3783F6F-0CBF-40F6-96A2-CDD87F7D913AI know God sees our little boy. I know he has seen every tear. Every heartache. Every fear. And I still believe He is working it all for GOOD. Grace be with you, my friends.

And we know that all things work together for good to them who love God; to them who are called according to His purpose. Romans 8:28

Real Mom Confession

If you grew up watching The Cosby Show and can remember your parents getting really excited about a thing called an “answering machine” then you most likely have a few lines by now.

What is there to do about this cosmetic quandary?

Botox? Too expensive.

Anti-aging cream? Good luck with that.

Diet and exercise? Don’t be ridiculous.

My plan for aging gracefully? Get different light bulbs.

 

Real Mom Confession

I am particularly excited about TOMORROW, as the boys return to school, after living through three years of homeschooling a cancer patient on chemo and a truck load of high octane steroids. 

I am particularly excited about this MONTH because it marks just about 4 years since Justin was diagnosed with leukemia. He still remains in remission. He is not without physical, social and emotional struggles. But he is HERE. He is getting a little stronger everyday. He is doing great in school. And I get to see his life slowly transform back into something that looks a lot like normal. 

And, finally, I am also particularly excited about FROZEN CHICKEN. Because it’s always there for you when you can’t get out of bed all day but still have four hungry guys to feed.  

In some ways, as Justin continues to leave his disease in the dust, mine is taking on a new fervor for kicking my butt. Maybe it was all along and I just didn’t notice because I was too busy pushing and pulling my little boy to stand up, press on and beat down all horrific things related to childhood cancer.

Anyway. I may be falling behind some but, by His grace, I am still pushing my boys ahead with all I got.

Even if all I got is frozen chicken. 

I don’t know if your new year will be happy or healthy or what. But, whatever comes, remember you are KNOWN and LOVED by a King!

In the day I cried out you answered me and made me bold with strength in my soul. Psalm 138:3

 

A Christmas Card of Sorts

Procuring cards, stamps and the old address book just didn’t happen this year. But here I can share with you where my head is at when not stuck in a laundry basket or to-do list. 

Joy — After several years attending holiday concerts, watching his brothers and feeling sick, Justin went on stage tonight and sang his little heart out!

Love — Let us not forget those who are hurting, sick or alone this season. Encouraging us to open our hearts and our homes! 

Peace — Jesus made a way for us to be reconciled to God, and in Him, we are free! 

From our family to yours, 
Merry Christmas

2019

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