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Getting the Port Removed!

      You know what's really funny? A three year old blasted on Versed.  I guess it's like Xanax, times 10.  Kelly has a video of Max swaying in his tiny pre-op scrubs.  He asks Max to count to ten.  Max holds up one finger, "three..." two fingers, "seven FIVE!!!!"  Kelly chuckles and says, "Yeah! Good job Buddy!"  I don't condone drugging small children - except yes I totally do.  It's not only hilarious but merciful as well.
 
I, for one, am extremely grateful that Texas Children's chooses to sedate Max before sticking him with the IV.  Max is a veteran with pokes now.  He knows it only hurts for a bit and then it's over. That doesn't exactly smooth over all the anticipatory anxiety in the car.  In other words, his experience gets us to the office/hospital without tears of protest, but once we're on the table, all bets are off. That's actually pretty amazing considering he's three! So before anything scary happens, they give him a shot of "happy juice", as they call it, which looks and tastes like Children's Advil. He can never take Advil again, by the way.  Advil taxes the kidneys and since he only has one, it's Tylenol only for him for the rest of his life. After about 15 minutes, it's like toddler happy hour.  He's happy and singing and swaying.  My little Irish McMichael, born on St. Patrick's Day seems a little cliche' when he's under the influence.  He just needs a tiny toddler-sized shillelagh and he could River Dance his way to the OR. 

The surgery went great and he is port-free.  His one-year-old brother can no longer punch or pinch him there for torture. ( Gross.)  If you ask him though, he'll tell you he misses it.  It was his identity for what he remembers as all his life.  It was his source of superpowers.  It made him brothers with Tony Stark.  We even called it his "Iron Man port".  I'm sad to see it go.  It was my security blanket.  Had the doctor let us off scott-free, I'd be happy to let it go.  Of course she didn't.  She had to leave that kernel of doubt.  So we'll stress over it for a couple more months.. then a couple more years... and really for the rest of our lives, we'll stress about any one of us having to go through this again.  

Speaking of lifelong trauma, Alex isn't doing so great.  Turns out she's pretty depressed and still carrying a tremendous amount of guilt over kicking Max in the beginning.  She knows she ultimately probably saved his life, but she lost a chunk of her childhood that day  I'll never be able to get that back for her.  There she was getting interrogated by the ER doctors who were sternly asking, "YOU did this? What EXACTLY did you do?!!"  Of course, I knew they wanted to know how best to zero in on his injuries while the CT images came back.  They had to get the most accurate information immediately because he was throwing up blood.  Secondly, they wanted to be sure his parents didn't catastrophically abuse their kid.  So I watched them terrify Alex because I knew if I helped her it would look like I was coaching her.  "Tell them what happened Alex.  It's ok.  You're not in trouble.."  Yeah, couldn't say that.  So I watched her get smaller and smaller as she not only thought the doctors hated her, but that she either obliterated her brother's kidney or possibly killed him.  I know for her entire life that moment will haunt her.  We're looking into counseling for her now.  

Meanwhile, I got a call from Austin's nurse last week.  He was peeing blood. BLOOD! What the heck?!! He said it had been hurting for about three days.  Lately we seem to have a problem understanding the difference between tattling and telling me important things.  On the way to the doctor I said, "Listen.. here's what you tell me: 1) Anything that is unsafe. 2) Anything that has to do with private parts that seems unusual. 3) Anything that is bleeding.  Most importantly 4) IF YOU ARE BLEEDING FROM YOUR PRIVATES YOU TELL ME!! 

He gave a urine and blood sample.  The blood sample took three tries and on the third try, they ultimately had to poke his finger and milk the blood out.  He almost fainted, but actually threw up.  I told him his little brother has been doing that every week for the last 6 months and some of those pokes were in his chest!  Austin realized what a tough little guy Max really is after that. But the thing was Then the doc gave us 3 scenarios.  Either he had a urinary tract infection or he had a kidney infection as a result from a strep infection a couple weeks ago ( I didn't know that could happen).  In three days one of the two tests should come up positive and we'd know which antibiotic to use to attack it.  If they both came up negative, then the third scenario was we'd have a bigger problem and we'd have to go to a kidney specialist.  

My stomach dropped. 

Another freakin kidney situation?!! Are you kidding me?!!

I told the nurse on the way out, "Listen... we can't take another one of THOSE calls!  Pleeeeeease don't call us with bad news again."  She smiled and agreed.  I was so stressed I thought my head was going to explode.  I wanted to cry, but not in front of Austin.  I wasn't going to tell anyone until I got the results.  When I got home, Alex looked at me and said, "You look like you need a hug, Momma."  So I went to the grocery store and called my mommy so she could stress with me for the next couple days.  

When the nurse called, BOTH tests came back positive.  I'm weirdly jubilent over a double infection. Austin is enjoying almost  5 teaspoons of two different antibiotics twice a day for 10 days.  But we aren't looking at a kidney specialist and he's going to keep both kidneys.  I'm great with that.

But that's the thing.  I guess we're all traumatized.  I guess we'll always blow things out of proportion a bit from now on because it'll always hang over our heads that we might have to go through this again.  We don't talk about it.  We don't act like it.  But behind the smiles and jokes, we're all freaking out a little more than everyone else over normal things.  I'm sure we'll level out and learn to cope with all things medical without immediately jumping to panic. It just takes time.

And again, things aren't bad.  Max is a happy little boy.  We finished the treatment.  We did it. We made it. We're not going to be cancer parents anymore.  In the beginning we were scared of dropping everything to be cancer parents and changing our whole lives.  Now we have to adjust to being Kelly and Heather again. After all this time, do we even know who those people are anymore?  I'll start looking for a job again soon, but in the end I hated that company so much that I was relieved to get laid off. I was miserable there. It's such a strange place to be wondering where to go next.

We're moving in 11 days.  It's a smaller, newer house down the road.  Everyone's enormously excited.  A new beginning.  A clean slate.  This house has become the House of Cancer and we're happy to say goodbye.  It's dark and gloomy with popcorn ceilings and leaky plumbing.  The new house is bright and open and new and man we can't wait. 

Max is undergoing de-programming.  He now has to eat his dinner.  No more marshamallow dinners in a desperate attempt to get calories into him.  He no longer gets frequent trips to Toys R Us out of guilt.  He always chose cheap stuff since he's three, thankfully, but he's not getting poked every week, so he has to get told "no" like normal kids now. That's a pretty big and frustrating adjustment.   

I'll let you guys know how the CT scan goes in a couple months.  Please keep Max in your prayers that the nodule doesn't grow and we don't have to go through this again.

We're doing another round of T-shirts because now that people see it, they want one.  It really melted my heart to see pics of people proudly wearing the "Team Max Beat Cancer Baby" shirts.  I'm so grateful to you for showing your support.  Thanks so much!  The new site should be up 9-19-13. https://www.booster.com/supermax2

Medical donations can still be made at the youcaring site:http://www.youcaring.com/medical-fundraiser/beat-cancer-baby/48542

If you want updates after this is all over, email me your addy at sumeriantraveler@hotmail.com or you can add me on facebook at https://www.facebook.com/ortizmcmichael


Thanks for your love and support!

Love,

Heather, Kelly, Alex, Austin, Supermax and Jameson Duke