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Tuesday, March 11, 2014

Love You. Hate Them.

I wanted to take a sec to say how incredibly grateful we are for all of the love and support you've sent our way.

Every day we get texts, emails, calls, letters and gifts. Every time I post -- either here or on CaringBridge -- I get such sweet responses from so many of you.

We have received the nicest letters from complete strangers. We've heard from people that we haven't spoken to in 20 years. Each night, Reid sleeps on a quilt that was painstakingly made for him by a woman he has never even met.

These random and specific acts of kindness get us through each day. They lift us up and they make us smile.

We love hearing from you. We love reading your words. We LOVE having you visit.

There are the people who know us well -- they curse cancer or make a joke. They know that we like to laugh and keep it loose. Cancer ain't gonna hold us down.

There are the people whom we don't know at all -- they send beautiful prayers and well wishes. They know that it takes an army of faith to get through a battle like this.

Every single one of you are loved and cherished.

I told a friend the other day: Times like these show you the true spirit of others. You get this rare, unobstructed view into a person's character and learn so much about their intention. Some people literally blow you away with kindness, love and generosity. Strangers become friends. Old friends become new. Good friends become best friends. And best friends become a lifeline.

I only hope that when the time comes to return the favor, I can live up to all of you. We honestly can't wait to pay it forward -- and we promise we will.

THANK YOU.


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Now that I've talked about how much I love all of you, let's talk about a few things I hate.

Call 'em whatever you want:

Microbes.
Parasites.
Spores.
Viruses.
Bacillus.
Pathogens.
Microorganisms.
Bacterium.
Protozoa.
Disease.
Grunge.
Filth.
Dirt.
Grime.
Mold.
Fungus.

They are all GERMS.

And we hate 'em.

You think cancer is the problem? Think again. All we think about are motherfricking germs.

Don't touch that! Don't go there! Don't hold that! Wash this! Sanitize that!

It's enough to make you go crazy.

Yep. Cancer sucks. I hate it. I want to eradicate it forever. No person should ever have to suffer through this horrible disease. A child should spend the day playing, not hanging out in a hospital.

But, the dang germs are an almost bigger problem.

At least for us.

With Reid's type of cancer and his specific treatment, his immunity is almost consistently at zero. He is always what is called neutropenic. That's when your absolute neutrophil count (ANC) is at about 1,000 or less. Reid hangs out below 300 most days, which is severely neutropenic. In fact, he spends weeks on end at ZERO.

Today he was 100 and everybody was pumped.

The chemo hits him hard and his numbers don't really have a chance to recover before he's hit again. It's all part of the plan.

Unfortunately, the plan means that his biggest risk at this point is infection. Bacterial, fungal, viral. It doesn't matter. They all suck.

So, we have to be vigilant and head these suckers off at the pass.

A lot of you have come to visit, so you know. A lot of you have not been allowed to visit, so you also know.

We're not talking about handwashing, people. We're talking "Are you sick? Have you coughed? Have you sneezed? Did you so much as watch a commercial about sinus medication today? Take off your shoes, scrub your hands, change your shirt, put your hair in a ponytail, sanitize your glasses, wear this mask and NO! You still can't hold him, are you absolutely insane??!?"

When Reid's counts are at zero, every precaution is taken. Elle is usually sent home. Toys are sanitized after each use. He can't go outside unless he has on a mask and a stroller cover. We can't have plants or flowers. No latex balloons. No Play-doh. (Not that he typically plays with latex balloons and Play-doh, but still. He couldn't even if he wanted to.)

A few weeks ago, we were able to go to Shreveport for a few days. I made my sister-in-law, nephews, and brother, -- my own flesh and blood --  go around the house to the backyard so that the kids could play outside. I wouldn't even let my own family in the door.

Reid can't be around an adult if they so much as have an itchy nose.

And he can't be around other kids -- period.

Sure, he might turn out to be a total weirdo. But, he'll be alive. (Hopefully, he won't turn out like our dog. We socialized her way too late, and now all she does is sleep and bark. Sometimes both at the same time.)

Anyhoo, people are pretty much off limits when he's neutropenic.

He also can't go in public. Not to a restaurant. Not to the grocery store. Not to Walgreens. Not anywhere but the four small walls of our apartment and the hospital.

He can technically go outside, but he has to wear a mask and avoid construction and crowds and plants and wind and clouds and sun and air.

Not really, but it feels like it.

We have to be extra-careful with his meds. Giving him an IV is an act of congress because he wants to grab it and kick it and basically smear germs all over the opening that leads right to his central vein. His line and dressing have to be sanitized and changed every other day.

Gloves and masks and alcohol wipes and hand sanitizer are everywhere.

And let's discuss eating, shall we?

Brother has 99 problems, and eating is definitely one.

For all you Down syndrome mamas, you know. Our kiddos have low tone or hypotonia. The low tone applies to everything, which is why physical development is often delayed. Hypotonia in the face and mouth -- combined with a different palate structure -- means that talking, eating, and drinking are more difficult.

This doesn't affect every kid with Down syndrome. Just like a typical kid, everyone has their own strengths and weaknesses. Some of Reid's buddies could be championship eaters. But, for my man, eating is probably his top developmental issue.

He is 17-months old. He is pulling up on everything, crawling, bear crawling, cruising, climbing stairs. He is attempting to stand alone, and he can take steps with the help of a toy or device.

His gross motor is amazing. He's doing so well and he works so hard. I am such a proud mama.

His fine motor and cognition are really good, too. It's hard for him to do some things, but he can sign at least ten words. He understands a lot more. He knows several animals. He points. He has a pretty good pincher grasp. He does the Itsy Bitsy Spider and Patty Cake and Peek-a-Boo. He can find your nose, eyes and mouth. He can put objects in and take them out. Like all of our kiddos, he knows how to do so much more. He WANTS to do so much more. But his little muscles work overtime and things are harder for him. He'll get it all in his own time.

But the feeding. Lord, have mercy. The feeding. This child will not feed himself. He will not give up his bottle. He will not eat solid food.

He can kind of chew, but he just doesn't feel like it, thankyouverymuch.

He can drink out of a sippy and out of a straw, but, he just doesn't feel like it, thankyouverymuch.

Heck, he can even feed himself. But, he really just does NOT feel like it, thankyouVERYmuch.

The kid is smart. Why on earth would anyone do something that they can have another person do for them instead?

He's a man of leisure and I respect that.

Anyway, I digress. We're talking about germs, not lounging ability. Point being, we've got enough feeding issues as is.

Enter the Low-Bacteria Diet.

Food carries germs. Lots of em. Food poisoning could kill Reid.

So, it's no fresh fruit. No fresh veggies. No deli meat. No eggs. No black pepper or raw spices. No leftovers. No eating out. No homemade baby food. Nothing unpasteurized. Nothing out of a container, unless it's individual-sized. Nothing can be opened for more than one hour or it's trash. On and on and on.

Basically, he can have anything that is over-processed and severely lacking in genuine sustenence, but for the love, do not give the child anything that might actually have a nutrient in it.

He also goes on a total hunger strike everytime he receives chemo and we have to kind of start from scratch each month with nasty, over-processed baby food.

It is what it is, but I sure would feel better if we could get some vitamins coursing through his little body. In the meantime, we 'll feed him what he will eat and I'll juice the hell out of some kale once we get outta here.

The ironic thing is that I was a so-called germaphobe before I knew anything about low-bacteria diets and immunosuppression.

But, this is different. Washing your hands before you eat is bush-league. Soap and water is for rookies. We're talking about Hazmat suits and full-on Lysol baths over here.

No nutrients or vitamins -- just a ton of harsh chemicals to keep us all healthy!

For now, I'm following my own advice and going with the flow. Maybe once this is all said and done, I'll let them roll around in dirt all day. They can wipe their noses with their hands and pee without washing afterward. They can sneeze and cough all over everything we own. Then, I'll clean them off with natural, organic soap and feed them a dinner of swiss chard, beets and a wheatgrass shot.

Yeah, probably not.

But we ARE going to ditch the masks.




















9 comments:

  1. Germs are the worst!! Y'all are the best!

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  2. This was a great post B. I laughed and pictured you cursing the germs! Love the pictures, as always. : ) Mr. Man just could NOT be any cuter if he tried. Cannot wait to see him walk!! This will all be over before you know it. Ya'll are fighting through this like some serious champs.
    Love, BB

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  3. Cutest little thing in a mask ever! And the picture of him looking at you when y'all are outside is priceless. He loves his mommy!!

    Love you! Julie

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  4. Love y'all! Cant wait to see y'all! Can't wait for masks to be gone permanently! Can't wait for Reid to enjoy mud, dogs and even snot! Cutest nuggets EVER. -monty

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  5. Reid...you have stolen my heart! Your beautiful smile lights up the room, and your amazing strength and positive attitude are absolutely extraordinary! Thank you for giving your mommy, Jen and myself a weekend that I will cherish for the rest of my life! I can't wait to have another Steelheart "jam session" with you, you little rockstar! Can't wait for you and Max to mud wrestle ;)! Love and miss y'all!!! -Julie A.

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  7. My little brother survived the same cancer almost fifteen years ago when he was six. I very well remember the days when my sister and I couldn't visit him in the hospital and when we had to wear masks around him. You, your family and your beautiful little boy are in my prayers.

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    Replies
    1. I'm so sorry I'm just now seeing this! Thank you so much for the prayers and for sharing with me! Much love.

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