Day 1084

10920AD6-4C03-4DD8-8996-3C76CEE9D0A4Justin continues to work hard in therapy and wear his leg stretching boots during rest time. His therapist and I also put together a plan for him to wear orthotic inserts.

My goal this summer is to hopefully improve the condition of his legs and feet with therapy and exercise while also getting rid of the extra weight he has gained.

This week, Justin will have an echocardiogram as well as his first CBC and physical exam since stopping chemotherapy.

Justin is looking forward to celebrating the end of chemo with his friends and family this coming Saturday! All are welcome to join us from 1-4pm at James Atkinson Memorial Park.

I waited patiently for the Lord;
And He inclined to me,
And heard my cry.
He also brought me up out of a horrible pit, 
Out of the miry clay,
And set my feet upon a rock,
And established my steps.

He has put a new song in my mouth Praise to our God;
Many will see it and fear,
And will trust in the Lord. Psalm 40:1-3

 

 

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Day 1072

Justin had a physical therapy evaluation this week. He still suffers from severe chemo-induced heel cord tightening and subsequent leg weakness. His feet have “collapsed” inward to compensate for lack of strength. He is in almost constant pain when walking or running.

It’s a strange and nasty side effect. His therapist again recommended casting his legs. At this, he began to cry. He said, “But, mom, I am just starting to get things normal again.”

I know, baby, I know.

For now, we will continue therapy and wearing leg braces as much as possible.

My doctor took several biopsies of my esophagus and stomach yesterday while I got the best sleep in years. She also prescribed a medication that will hopefully keep the bile I’ve been  vomiting where it’s supposed to be.

These biopsies will be negative. No need for concern.

I am convinced this stomach situation is all stress-related. It is not an easy thing to be a chemo-patient-care-taker and watch your child suffer repeatedly. Also I probably need a few good days on a beach somewhere.

But. That’s not happening. So…I press on in the measure of strength God graciously gives each and every day.

For the which cause I also suffer these things: nevertheless I am not ashamed: for I know whom I have believed, and am persuaded that He is able to keep that which I have committed unto Him against that Day. 2 Timothy 1:12

 

Cancer Mom Confession

I admit an affinity to Italian opera. Maybe because I remember my grandfather listening to it, at a very high decibel, while he made stuff in the garage He fashioned a jewelry box and doll house for me in that garage.

Last night, my friend and I were listening  to opera and maybe eating chocolate pie and doing a really bad version of living room ballet. Or really awesome depending how you look at it.

Anyway.

It brought to mind this song and I just can’t help but share.

For my cancer families and everyone reading, really. I dare you to listen and try not to be moved.

You’re All Invited…

0D0332B0-8EFA-4D94-9596-8F8AEFB5F4E1Come celebrate with treats and fun for Justin’s last chemo!

Saturday, April 27th, 1-4pm at James Atkinson Memorial Park. 138 Bethel Mill Road Sewell, NJ. Look for us in pavilion next to the playground.

Anyone is welcome. Hope to see you there!

 

Day 1053

Tomorrow I will hold Justin’s hands and play his favorite song and rub his back while they place an IV and inject chemotherapy drugs into his little veins for the last time (barring relapse).

The drug he will be given causes heart inflammation, so he will, subsequently, take another round of steroids for the last time.

Justin’s body is tired, out of shape and swollen with extra weight due to the effects of steroids and chemo-mouth-induced salt cravings.

He does not remember what a “normal” life is like, and, now, he is expected to live one.

But, we will take it one step at a time, and we will get there. Justin is a survivor. The rest can be slowly fixed. He is here. He is a survivor.

I have never been so grateful.

I have not been a perfect cancer mom. I have made mistakes and I have failed. I am tired, burnt out, down twenty pounds  and still vomiting a good amount of my daily food intake. But I am still getting up. I am still doing the best I can. And I think maybe that’s enough. Maybe it’s enough that I am still standing by his side.

God gave us a 9 lb. 13 oz. baby Justin on August 26, 2010. He was strong, funny, smart and loved to play with his Little Tykes t-ball set.

And then he left us for a while. He was here, physically, but too traumatized by pain and strung out on toxic drugs to be recognized.

Now God is giving him back to us. Scarred and changed, but the light has returned to his blue eyes and he is able to be funny again. Really funny, actually. He makes me laugh every day. And he knows things that other kids don’t know. He understands things about people and life and God that are well beyond his years.

May we never, ever get over this miracle. To God alone be all the glory and praise.

Stick around for pictures of Justin’s last chemo coming soon!

Day 1044

Why do people say “I know it like the back of my hand”? Do some people sit around staring at their hands? Not sure I even know what my hands look like, really.

Anyway.

Justin is having his usual ups and downs this chemo cycle. He has marked the twenty-fifth of March as  “last cemo” on our over-loaded family calendar. Didn’t have the heart to correct his spelling. Who cares how to spell that word anyway.

Thank you for continued support and prayer.

 

Cancer Mom Confession

I am physically here taking care of Justin’s many needs, driving Michael to baseball practice, helping Nicky with his homework.

But my mind has wandered off to a deserted island. And it won’t be spelling “help” in seashells on the beach because it doesn’t want to be found.

Save the Date!

ap,190x210,16x12,1,f8f8f8,t-pad,210x230,f8f8f8.lite-1u1Justin’s end of treatment celebration will be…

Saturday, April 27th in the pavilion and playground of James G. Atkinson Memorial Park at 138 Bethel Mill Rd., Sewell, NJ.

Come anytime from 1-4pm for snacks, fun and a big game of kickball at Justin’s request. Yes, even I will play!

I will sing the Lord’s praise, for He has been good to me. Psalm 13:6 

And the Last Chemo Date is…

March 25, 2019.

Justin will receive his last infusion of chemotherapy on this day.

We are planning an open house-type celebration at a local park this Spring. More details on this to come…

We are coming up on a MAJOR hurdle but this is not, in fact, the finish line. As of the end of March, Justin will no longer receive treatment, but he will still be seen in clinic every month for a physical exam and CBC. The following year, fifth and final, we will make the trip to clinic once every other month. Medical exams, heart monitoring and needle sticks will still very much be a part of his life until Justin is declared completely cancer-free.

Justin must remain in remission for a total of five years to be considered cured.

We are staying ever-positive and hopeful, but, of course, without the regular infusions of cancer-suppressing drugs, concern over relapse becomes far greater.

I am elated and I am terrified. Our hope is in the Lord.