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! 

Aside 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.

After 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! 

Recently, 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.

I 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

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

From our family to yours, wishing you good fun, great memories, love and grace always.

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. 

After three and a half years of stifling gasps, gulping down sobs and gagging on snot, I can breathe normally again.

Justin has completed a week and a half of fourth grade, in a classroom, in a building, in a school.

This did not happen without struggle. There were many conversations, tears, battles, fear. His fear about being away from me for seven hours a day.

This was a trial all summer. The impending doom. To Justin, it was. To me, it was freedom.

So it was a combination of desperate prayer, realistic discussions, tough love, and unadulterated bribery that got him in the school doors and out of the nurse’s office trying to call me to pick him up. Okay, that happened twice but I remained firm.

And he isn’t just showing up for school, bawling in the corner all day. He is thriving!

Justin’s teacher reports great listening skills, a desire to please, excellent reading capabilities, even sharing his book with another student and saying encouraging words to another boy who was having a case of first week jitters.

Now that isn’t me. I can’t take a sick-crippled-wild-animal-child who screamed at doctors, spit out medication, lost ability to walk, pulled tubes from his throat, kicked me in the face, refused to speak, ripped apart his brother’s bedroom, tore up school papers and couldn’t be away from me for more than five minutes without having a full-blown panic attack. Then turn him into a walking, talking, reading, writing, smiling, caring, compassionate, funny, healthy little boy who just wants to go to school, play flag football and eat cheeseburgers.

I was there for all of it, yes. But God did that. God did all of that.

We won’t be without bumps in the road of course. But I am convinced that Justin has come back to us for good.

I have been Justin’s mom, nurse, teacher, therapist for almost four years.

Driving him to school today felt much like the many times I walked him into surgery. There was no room for fear or nerves in my conscious because my heart was busy absorbing all of his. It is empathy at it’s highest level.

I am nine years old walking into school for the first time and all I know is the person who fixes everything isn’t with me. I know God is with me because my mom said so but I can’t see Him.

I feel his fear.

Just as in surgery, I know he is in very good hands. But those hands are not mine.

These are the days my faith is put to the test.

O Lord, you have searched me and known me!
You know when I sit down and when I rise up; you discern my thoughts from afar.
You search out my path and my lying down
    and are acquainted with all my ways.
Even before a word is on my tongue,
    behold, O Lord, you know it altogether.
You hem me in, behind and before,
    and lay your hand upon me. Psalm 139:1-5

We celebrated with family and friends over this past weekend. We are very grateful that he is here with us and is doing well.

Come and see what God has done: he is awesome in his deeds toward the children of man. He turned the sea into dry land; they passed through the river on foot. There did we rejoice in him, who rules by his might forever…Psalm 66:5-7a

Update…

Justin is still experiencing fatigue and foot/leg issues but is slowly and steadily improving. His latest blood counts show that he is still in remission. We are so very grateful for this.

Justin is pictured below anticipating a blood draw, working out in the CHOP gym and getting in some cuddle time with mom.

We press on. Thank you for continued support and prayer.

Random…

Life can be really, really, really hard. Even though Justin is apparently getting better, I understand this. I get it on many personal levels. And I see it all around me. There is death, illness, pain, loneliness, failure, disappointment, loss, poverty, hunger, anxiety, cruelty, anger, fear, evil and on and on and on.

I mean good grief. I have to speak hope into my heart every single day or possibly spiral into despair just at reading the news.

Now that you are completely depressed, let me offer some encouragement.

I have no trite sayings, empty platitudes or unsolicited counsel to offer. All I have is hope and that is this:

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

https://www.childrenwithcancer.org.uk/thoughts-on-managing-sibling-anxiety/

Please feel free to share this latest article with those who it may benefit. Grace be with you.