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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Day 1305

We made our monthly trip to the oncology clinic today. I’m thrilled to report Justin’s cell counts are good which means his blood and bone marrow are still clean and free of leukemia. We are so very grateful!

We have successfully moved to a rancher, which is something we’ve been wanting to do for some time. I don’t talk about it much anymore, but I was diagnosed with congenital muscular dystrophy in 2014. I have a rare form of this disease, which varies in how it affects different people and can onset at birth or adulthood. But, generally, it’s a progressive condition and currently there is no treatment or cure. For me, it showed up with a vengeance at age 36 and changed an active, energetic, fit mom (okay somewhat) into an achy, much physically weaker, easily fatigued mom, who is prone to pain distraction techniques involving lots of sugar.

Anyway. The actual move was hard on me, really hard. But the long-term lack of several daily climbs up and down stairs will hopefully improve my general state of well-being. Also we happen to really like this house.

God is gracious and God is good.

Here’s a few snaps of the new crib as we unpack and attempt to prepare for the holidays. I would show you our bedroom but that might just be weird.

Thank you for continued support and prayer as we press on in faith and hope. As I write from our couch, this current location is emitting an undesirable odor, but I can’t decide if it’s rotten food under the cushion, dirty socks shoved into the cracks, teenage boy smell, adolescent boy smell or worse — dog! Ew. Grace be with you, my friends.

For you have been my hope, Sovereign Lord, my confidence since my youth. As for me, I will always have hope; I will praise you more and more. Psalm 71:5,14

Thoughts on Justin, Selling our House and a Supermarket Encounter

Justin continues to battle foot pain and fatigue, but his little white blood cells are still normal and he’s doing remarkably well in school.

For this, we are incredibly grateful.

We have put our house up for sale for various reasons. Keeping it clean and picked up for showings with three boys and an idiotic, seventy-five pound golden retriever is not for the faint of heart, let me tell you. 

Just when I start to think people are generally full of judgement, unforgiving and unable to see outside of their own head, God shows me something a little bit beautiful. I say a little bit even though it was actually a very beautiful thing, because of the background setting. It happened in a supermarket and I hate these places, however necessary they are to my life. It’s always over-crowded, too bright, very cold and smells really weird in this one spot right by the lettuce. 

Anyway.

This super cute, little, old guy wearing a hat that read “I am a World War II Veteran” rolled up into line behind me. I sent him what was, in my opinion, an adorable smile but the guy behind him did one better. Shook his hand and thanked him.

The guy behind him took one minute out of his life to SEE someone besides himself and his own problems. And he responded. AND he happen to be wearing GREAT shoes. The things you notice. 

I hope you will SEE someone today. They just may need you. Grace be with you, my friends.

Real Mom Confession

Kids have NEEDS. Homework, school projects, school events, activities, sports, concerts, plays, clothes and shoes that actually fit, hair cuts, soap, toothpaste, doctor’s appointments, medication, practice this, practice that and on and on and on.

Kids talk a LOT. Mom, what is fiber? Mom, this kid at school looked at me. Mom, when is Christmas? Mom, I need help. Mom, that’s not fair. Mom, are you coming to my game? Mom, I need new cleats. Mom, why does your hair look weird? Mom, can I watch TV? Mom, why did he get to sit in the front 3 times this week? Mom, what was the Cold War? Mom, I need a poster board. Mom, where does your poop go when you flush the toilet? Mom, look at this picture I drew and LET ME TELL YOU EVERY SINGLE DETAIL ABOUT IT.

My point is life with kids never, ever stops and that doesn’t even touch your job if you have one, taking care of the house, taking care of YOURSELF. 

Me? I run around all day like a headless chicken, putting our fires, solving problems, answering questions. Then I go take a shower and realize I forgot to buy shampoo. Because you are always irreparably OUT of something!

I begin to feel like it’s very possible I am one empty toilet paper roll away from a nervous breakdown.

And, then, God in His grace, gently reminds me of His goodness and design and that every little detail is there for a reason. The stress begins to melt and is replaced with a grateful heart. Because really and truly, I am thankful I get to be a mom to my three amazing boys and all the million little challenges that come along with them. Grace be with you, moms and friends. 

 

 

Day 1240

Today, as I sat in traffic on my way to work, Wawa beverage in hand, after dropping my kids off at school, I thought, “oh, this is how normal people live.”

Justin’s physical exam and CBC showed that he is still in remission and doing well! He is also super happy that he can get a finger stick now as opposed to a full needle stab.

I recently happened to catch my boys in a rare moment of getting along while at our orthodontist. I’m not sure why the waiting room is decorated like Aunt Mabel’s parlor, but, whatever, Nicky and Michael’s teeth look better than the mess they had going on before.

As always, we are ever grateful for God’s unparalleled love, provision and healing. Grace be with you, my friends.