Why Am I Feeling So Beige?

15 Feb

Today is Sunday, February 15.

It’s not been the best day for me. I was sitting on the sofa with the kids this morning, feeling like I was melting into the beige fabric.

I’ve really been stressed lately with the weight of Jackson and Abby’s extras. I think everyone has an opinion of how to function with this type of strain, but unless you’re the one going through it, you just don’t know.

All this time, maybe it was just the optimist in me, but I thought: we made it. Out of cancer treatment, out of the NICU. But over the past two weeks, this fact hit me like a ton of bricks: there wasn’t an actual end. Life wasn’t going to get “easy” now just because it was hard then. Life was just going to be different.

It sounds pretty dumb written out, but geez, that realization freakin’ sucked.

This morning, I started thinking, why am I feeling so beige? We had a nice Valentine’s Day. Ev and I got some time away from the kids. And then I remembered what day it was. It was February 15th. And it was a Sunday. The exact date and day of the week when Jackson was diagnosed with cancer. It’s been easier just to acknowledge today is the culprit and it’s just going to be that way.

It’s a little annoying, actually. It’s been SIX YEARS. Why does it still sneak up on me? Why are some years easier than others? Jackson’s doing okay. He doesn’t remember. He was a baby. So why does it still hurt?

I know the answer to that, obviously. It’s because I remember. Jackson’s little body took the treatment and my heart took the pain. He lost all his hair. He wears hearing aids. He has to be monitored for long-term effects.

And I remember.

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Living a Nightmare <from Jackson’s Baby Journal>

Sunday morning Jackson and I went to church, while Ev went over his parent’s house to finish cutting the kitchen cabinets. My parents were keeping his age group in the nursery, so I just decided to stay and we played and played. After that we went to Panera for lunch, and by the time we pulled in our driveway, he was fast asleep so I took him straight in and laid him down. Around 3:15 he woke up from his nap and I sang to him as we picked out some play clothes to change into and changed his diaper. For some reason, his stomach looked different, like a rib was out of place. Then I noticed it wasn’t his ribs, it was lower and on the side. Weird – must have bumped into something – maybe he needed to go to the bathroom? I was alarmed and called Ev at his parents. Five minutes later, we were headed to Sentara Careplex to get it looked at.

The line at Sentara was so long at the Emergency Room. We decided to call Jackson’s pediatrician to see if he could just meet us and look him over. The doctor on call said it was best to get it checked out at CHKD in Norfolk, since they are the experts. We waited and waited, and were joined by my parents, Ev’s parents and my brother. Ev and I wheeled Jackson around the ER while we waited to be seen in a wagon – he was the cutest thing in his yellow patient robe, everyone said so. They ER resident said the only thing on the right side where the lump was is a kidney, the liver and your gut. We were upgraded to an ER attending physcian, who took us immediately for a CT scan. And that’s when our lives changed. The lump on his side was then immediately called “the mass” or “the tumor” and the head of oncology was coming in from home to meet us for a consult at 1:30 in the morning. Med students, residents, doctors were coming in to feel Jackson’s stomach, and I told them to keep their hands off.

Initially we were told he had a mass on his right adrenal gland, the size of a softball. Could be an infection, could be benign, could even be a kidney malformation. It had been hiding in his sweet little belly, pushing his organs around like when you’re pregnant. When the cyst on top filled with fluid and poked out, that’s when I felt it. No warning, no pain, no sickness. This is just about how most find it out. When we finally settled into the room around 3am, my eyes were barely slits, my face red and splotchy, my head was throbbing all the way into my teeth. With Jackson and Everett asleep in the room, I walked the halls crying and praying. Only 650 cases are diagnosed in the U.S. each year with Neuroblastoma – and my baby is one of them. Cancer! It makes me want to scream and sob and blame someone. I want to kiss him and rock him and take it away for him. After that cry, that was it. You find strength you never knew existed.

Tuesday we had a biopsy and central line put in for Jackson’s IV/fluids/chemo treatments. Wednesday he recovered from surgery and we had and EKG and heart ultrasound. Thursday (today) he had his bone scan. We’ve got big things ahead of us – we’ve got more tests to determine the course of treatment, which I think we’ll know and get started on towards the middle of next week. Since we don’t have anymore tests until Tuesday, they sent us home tonight and we are so VERY happy to be at home. We’ll probably have to be admitted Wednesday again, to finish one last big test and to begin chemo.

Ev and I ask that you pray for Jackson. This is a journey, with ups and downs. All the doctors say that children under 18 months do the VERY BEST with Neuroblastoma and stand a great chance at recovery. We believe that God didn’t give us Jackson to take him away, but to enrich our lives for a very long time. He is such a trooper and has completely wooed all the nurses and doctors at CHKD. He’s made so many people’s days. We are home for a reprieve this weekend, and are just so thankful for it. We want to take this time to be alone as a family and enjoy every second of normalcy before the whirlwind begins again. Please keep the prayers coming, we’ve heard of people praying for Jackson all around the world. It means the world to us. We love our little boy.

 

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