Day 1221 – You Make Beautiful Things

4DD8CCA3-05AA-4762-AB79-D84AE4062F3BAfter 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 ain’t me. Come on people. 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. And he is a beautiful beautiful beautiful beautiful boy.

 

 

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Justin’s 1st day of school – again

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

 

Justin’s 9th Birthday Photo Gallery!

We celebrated with family and friends over this past weekend and crashed my brother’s beach house for some more fun on Justin’s birthday. We are so very grateful that he is here with us. He is doing well. And he is happy.

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

Day 1181

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

Day 1145

Each time I calculate and record the days of Justin’s ordeal, I imagine I am Tom Hanks in Castaway, scratching it out on a cave wall. Except I wouldn’t last two hours living as a primitive. No chapstick? I’m out.

Anyway.

Today, Justin will be seen in clinic for a CBC (complete blood count) and physical exam. There is a term coined “scanziety” in the childhood cancer world, and maybe beyond. Of this, I do not know. But, in our world, it refers to the apprehensive feeling a parent feels as they are placing their child into CT to scan for the possible return of a tumor.

Now, Justin had leukemia, a “liquid tumor” if you will. It flowed throughout his entire body. So he is not placed in a CT scan, rather the blood is checked for abnormalities.

I do believe there is yet to be a term invented for this. Let me try. CBCziety? No. Bloodziety? Dreadful. It just doesn’t seem to work for leukemia.

Anyway.

I decided that I won’t suffer from this disorder, whatever you want to call it. (Clearly, I already have other disorders, let’s be honest). I won’t live in fear of the cancer returning. What will be, will be. I can’t control any of it. So, instead, I choose to embrace each day, with all of their respective flaws, and try to make the very best of it all.

DFC44A02-2344-4A51-B2B2-C9786C4D6FD8

This kid has the idea. Grace be with you, my friends.

 

 

Day 1140

Big bro Michael helped out with physical therapy today. Michael is older by sixteen months, but I am often asked if he and Justin are twins. You can see why. They share clothes and even a big drawer full of socks and underwear. Hopefully it’s all clean.

Justin is also swimming, eating well and getting stronger everyday. I mean we aren’t downing kale smoothies quite yet, but we are making healthy food choices in general.

He will be back in clinic next week for a check-up and CBC. Each time they tell us his blood is still clear of abnormal cell growth, also known as leukemia, my heart soars.

Thank you for continued support and prayer. All glory to God.

 

From Survivor to Champion

22D22CEC-80BE-4962-B23C-A6E348C7DC95Today, with Jeff as coach and Justin the quarterback, their flag football team took the championship. Justin is on cloud nine.

For an eight-year-old who survived cancer and just finished three years of chemotherapy, this is the greatest success he can imagine at this time in his life. To Justin, this is HUGE.

Even when things are hard and painful and darkness is pushing in, still keep getting up. You just never know what God is going to do.

Thank you for continued support and prayer. Hold fast to hope. Grace be with you, my friends.

Remember my affliction and my    wanderings, the wormwood and the gall!
My soul continually remembers it
    and is bowed down within me.
But this I call to mind,
    and therefore I have hope:

The steadfast love of the Lord never ceases;
    his mercies never come to an end;
they are new every morning;
    great is your faithfulness.
The Lord is my portion,” says my soul,
    “therefore I will hope in him.” Lamentations 3:22-23

 

Day 1111

Life After Chemo

150FC72F-4BF6-4C72-A340-ABA9FD454A48Justin continues to go to monthly check-ups where they examine his body for lumps and withdraw blood to analyze.

D6A0BD1B-4B7E-444B-A302-0E3832481491He will also have his heart monitored periodically. Monday we went for an EKG and echocardiogram.

 

70FD04DF-1A31-4F18-B80C-D517A76C765CWe also met with a nutritionist to make a plan to slowly transition him from steroid-induced-craving-super-salty-junk-foods to more healthy choices. You can see how interested he was in THAT conversation.

But I am allowing him to make some of his own choices and that is huge. We made a list of foods he likes, with nutritional modifications, as well as some healthy foods he is willing to try.

Part of it is clearly behavioral and habitual. He felt terrible and out of his mind on steroids for 3 years, but french fries made it all better for 10 minutes. He wasn’t given any choice about being sick and in pain and having surgeries and taking needle sticks and living in the hospital, but demanding pizza made him feel a little bit in control of the rotten situation.

So I get this and realize it is a process that will take time. It’s about making fundamental changes rather than dieting.

It’s about working really hard to find our “new normal” as an experienced cancer mom and friend shared with me recently.

May God grant us wisdom as well as His continued undeniable strength. Grace be with you, my friends.