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Friday, November 29, 2013

REIDSTRONG

When I wrote The Story of Us, part of me truly believed that would be our Big Story.

The tale we were supposed to tell for the rest of our days.

Our version of We Came, We Saw, We Conquered. Our pièce de résistance.

Our Magnum opus.

I don't know. I can't say that I was totally naive. I didn't necessarily ascribe to the idea that we'd put in our time, so we were now immune to experiencing another of life's many surprises.

But I can't say that I expected this.

Another moment frozen in time. Another before and after. Bad news.

Words coming in bits and pieces. One word standing out against the rest.

Leukemia.

It's all still a little foggy.

Three weeks ago today, I took our baby boy into the pediatrician because I felt like something was "off."

Maybe it was an ear infection. Maybe it was the tubes he had placed in his eyes, I couldn't say.

I almost didn't take him, because maybe he was just teething. We had recently taken his bottle away and he was having a little separation anxiety.

It could be anything.

Anything but Cancer.

I could spend a lot of time writing about the specifics of that day, but I'm not quite there yet. I haven't yet wrapped my head around it all.

In fact, I'm not really sure what I'm supposed to be writing here.

All I know is that writing makes me feel better.

And I need something to make me feel better.

I have been a whisper of myself for the past three weeks, and I need to remember who I am. I need to find that mama bear and break out of my funk and warrior on for my son. For my daughter and for my husband.

I need to stop focusing on the what was and focus on the what is.

Which is this:

Reid has leukemia.

And he is going to beat it.

Before I took him to the doctor, I was concerned about some bruising and a few broken blood vessels called petechia.

Reid has always had low platelet counts, and we often do a CBC to check his numbers.

Because of the bruising, we decided to do a CBC while we were at the pediatrician's office.

His platelets were abnormally low, and the doctor was very concerned.  She asked me to call someone to pick up Elle from school, because we needed to see the hematologist right away.

That afternoon was a blur, but let's just say Reid never went home again.

He was admitted into LSUMC that night and an ambulance from St. Jude picked him up the very next morning.

Patrick rode to Memphis in the ambulance, and my dad drove me up in my car.

We have been here ever since.

Reid's type of leukemia is called Acute Myeloid Leukemia, or AML for short.  It is rare -- only about 500 people are diagnosed with AML each year.

Do yourself a favor and don't Google it.

AML is more aggressive than the more common type of leukemia, which is called ALL.

Because of this, his treatment will be more aggressive. Although it will be more concise, lasting over a period of 6-8 months instead of years.

He started treatment as soon as his diagnosis was confirmed by St. Jude.

His protocol consists of six back-to-back courses that go like this:

4-7 days of inpatient chemotherapy. He had a double lumen central venous catheter (say that three times fast) surgically insterted into his chest, which is how he receives his two intravenous chemos. They run 24-hours a day for the entire week of treatment.

He also receives an oral chemotherapy.

They found leukemia in his spinal fluid, which is called CNS Disease. They treat that by inserting chemo directly into his spine during a spinal tap procedure. The good news is that they didn't see any leukemia cells after the two initial spinal tap treatments, and they plan to only have to administer one more round.

Once chemotherapy is completed, he is moved to outpatient to recover.

During that time, he still goes to the hospital every day for blood draws, check-ups, regular platelet and blood transfusions, spinal taps and more. He also receives physical, occupational and speech therapy.

While he is in this recovery period, his has no immunity. He is what's called neutropenic and very susceptible to infection. He must wear a mask. Avoid crowds. He can't go out into public. He can't risk illness.

It is very literally a matter of life and death.

He is on 13 prescription medications to manage his pain and fight off infection.

Most are twice a day. Some are as needed. One is Monday, Tuesday, Wednesday only.

Some go with food. One must be on an empty stomach. As in no food for two hours before and one hour after. This includes milk. At twice a day, that's six full hours he can't eat or drink. Which is proving to be problematic, since brother can't tell time.

We have to administer certain medications through his catheter. We have to clean and flush the lines each day.

Change his dressing every other day.

Change the claves on Fridays. What the hell is a clave, anyway?

Pat and I will have unofficial nursing degrees after all is said and done. And my iPhone will probably explode from all of the alarms I have set.

Once his numbers start to go back up, he is immediately admitted inpatient to start the next round of chemotherapy.

And so the story goes -- six times around.

So, that's the logistics. But, I know you want the real story.

How is he? How are we?

And of course, what's his prognosis?

Well, the very good news is this: His prognosis is excellent.

The overall prognosis for AML is not good. It's very sad, actually. That's why I told you not to Google it.

One exception to that; however, is children with Down syndrome.

For reasons unknown, people with Down syndrome are unfortunately more at-risk for leukemia. His oncologists tell us that Down syndrome is actually the indirect cause of his cancer.

But here's the ironic part. For reasons also unknown, children with Down syndrome tend to do very well with treatment and come through with flying colors.

SO, basically, the Down syndrome is the reason he has cancer, but it's also the reason he'll beat this thing.

WTF, right?

But, Reid continues to amaze me.

He has always been (and will always be) my hero. He is the strongest person I know and such a trooper.

Chemo was really tough on him - we were inpatient for 12 very long days and he was incredibly, violently sick.

He couldn't eat or sleep or do much of anything at all.

Before his diagnosis, he was crawling and pulling up and getting into everything.

After his first round of chemo, he couldn't even sit up and he constantly battled fevers, nausea, and rashes.

They drew blood more than 21 times in two days. Reid's veins are notoriously hard to access, and they beat him to hell trying to get a line. They even tried once in his head, which mama would have NEVER allowed, but I was downstairs when they did it. (That didn't stop me from going postal after-the-fact, though. Let's just say they will never make that mistake again.)






He is now two weeks post-chemo and doing so much better. He's feeling pretty good most days and almost back to his old self. He's having a few side effects -- mouth sores, trouble sleeping (as in HE DOES NOT SLEEP), no appetite, itchiness, some vomiting -- and he seems uncomfortable at times, but overall, he's my loving, happy, smiling boy.

We will unfortunately start the entire process over in another week or so.






Speaking of smiling and happy, Elle has been such a trooper. She has been so helpful and sweet, but the transition has been hard on her. This literally happened overnight - I dropped her off at school on a Friday morning and I only saw her once more to say goodbye. We left home very abruptly and she stayed with my parents for almost two weeks, which was incredibly difficult. She didn't understand where we were or why Reid was sick. She wanted to know if she had leukemia, too.

And then, we pulled her out of school. Out of dance. Out of her home. Her bed.

She had to leave her friends and her dog and her toys.

She came up here and she all of a sudden has a new place to live, a new city, a new school. A totally new life.

But, she's handling it with such grace and charm.



Patrick has been amazing, too. He is so sweet and loving and calm and takes great care of us, just like always.

He is our rock and has enough strength for all of us.

Mama on the other hand?

I'm a little more pissed off about things.  I've been feeling really sorry for myself these past few weeks.

I'm exhausted, grumpy and rude. I'm lamenting my old life and cursing the new.

And I find that I can't even properly process the whole reason we're here.

The CANCER.

That part. I just can't deal.

I can't think about it too much, because I will break. I cannot focus on what is going on inside his precious little body - I just have to take care of him. Go through the steps and make sure he receives the best treatment.

I have to be his mama - hold him tight and trust that he will get through this.

That he will fight this.

It's all been such a blow to my senses. I have a million questions that I know I may never get answers to.

Why did this happen?

How is this real?

What are we going to do?

Where is our old life?

When is it coming back?

Why this innocent, precious baby?

Why us?

Let's be honest, I've been on a downward spiral.

I yelled at the valet the other day.

I believe it was something along the lines of, "I hate this place!" (I may or may not have also thrown the stroller for dramatic effect.) Which, is so untrue -  St. Jude is pretty much like heaven on Earth with all of these saints walking around curing cancer.

It's just been hard to focus on the good.

We all know I'm a fighter - I am fiercely loyal and I will fight to the death for the people I love.

But it turns out that I am literally a FIGHTER.

And that's not always a good thing because I am fighting this. I am really struggling against these chains and trying hard to break them and it's not working.

I am running directly into a hurricane and expecting to come out alive.

It's one thing to fight for something. And another thing to fight against it entirely.

So I need to switch gears. Accept that my son has cancer and that we are here and that everything is different. I need to pray really hard and trust that he's going to be okay.

That we will all be okay.

I need to focus my attention on a different fight - on kicking cancer's ass and getting my baby back home where he belongs.

I've been listening to a lot of Katy Perry, which helps.

(Apparently, I turn into a 13-year old girl when faced with adversity. Kelly Clarkson got me through the Down syndrome and heart diagnosis. Katy's gonna get me through this.)

I can feel it in my bones. I'm close to making the switch.

Here's how it works:

Get knocked down.
Wallow around for a while and feel sorry for myself.
Get up.
Dust myself off.
Go get the motherfucker that knocked me down in the first place.

I'm currently in the Get Up phase. It's just taking me a little longer than usual.

I'm getting my strength back day by day, so Cancer watch out.

We are coming for you.

And we are REIDSTRONG.







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