Day 1053

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

Justin’s body is tired, out of shape and swollen 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 am grateful. But I am also tired. I literally vomited every day for a year. But I am still getting up. Still doing the best I can. And I think maybe that’s enough.

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 affected by drugs and side effects of drugs to be recognized.

Now he is coming 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.

Day 1044

Why do people say “I know it like the back of my hand”? Do some people sit around staring at their hands?

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.

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 I won’t be spelling “help” in seashells on the beach because I don’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 

Last Chemo Date Scheduled

March 25, 2019.

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

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 positive and hopeful.

I am elated and I am afraid.

Our hope is in the Lord.

Day 1027 Last Dreaded Spinal Tap

Tomorrow. Justin’s last spinal tap. He has had twenty-seven.

Tomorrow. For the last time, we will drug him with Ativan for his copious needle anxiety, refuse him food (because he has to fast), support him while they place an IV, then sit close to his face while they prep and sedate him. A large needle will then be injected into his spine, withdrawing fluid and inserting methotrexate  directly into his central nervous system. His little spine and developing brain. He will be conscious. He will feel the pain of the needle. But, too loopy to cry out, a single, large tear will run down his face. Then, mercifully, Justin will fall asleep for a bit, only to wake up to his favorite foods.

That last part isn’t so bad.

Tomorrow. For the last time, we will schedule another round of chemo. Tomorrow, we will have a date ready to announce for his last treatment!

Tonight, Justin and I talked about what we think a “superhero” actually looks like. And we agree on this. A hero isn’t the strongest or the smartest or the fastest. A hero is one who gets knocked down and KEEPS GETTING UP.

We talked about how God has allowed and helped Justin to keep getting up.

We are endlessly grateful.

Thank you for continued prayer and support. Don’t miss the exciting series finale coming soon!