Sunday, January 24, 2016

two down

Laying relatively low for the past seven weeks has a few perks:

Pizza - lots of pizza.
Warm snuggles by the fire.
And . . .
Harry Potter.

I started reading them out loud to Punk when he was five. Trouble was, by the time the last one came out, Kooka was five and she wanted in - so we had to start all over. (Not like I hadn't read them all a dozen times anyway).

Harry Potter books were so important to Punk and Kooka, that a week after Yoda was born, they divvied up responsibilities. If I died, Punk was in charge of reading them out loud to Yoda. Kooka was in charge of reading "Sisters Grimm".

Thankfully, I'm still here. Yoda is five, and Harry Potter is her new favorite thing. We're just finished book two, and she doesn't show any signs of slowing down.

Rico tells her that when he is better they can go to the castle. Here's hoping that's soon.

Thursday, January 21, 2016

always

Maybe the worst part of being undiagnosablly ill is people thinking that you aren't sick at all.

They see him drop Yoda off at school, and have no idea how hard he struggled to get out of bed, much less out of the house.

We have lunch at a restaurant and people stop to say how glad they are that he's feeling better. He's not, but he smiles and nods, because saying "I feel like a $#!+ taco," just isn't something you tell people in polite conversation.

He walks out to get the mail and it might be the only time he sees the sun all day.

He's not better.

To be fair - he almost died. That's real.  He laid in ICU and when I told the nurse I was running home to check on our kids and she said, "I wouldn't." I told her I lived three blocks away. She shook her head and said, "You might wish you'd stayed."

It was that close.

It's true, we are no longer hanging on every breath like we were before Christmas. But we still hang on every laugh, every dinner together, every smile, every good day.

There is no name for what is going on, but it's always here.
Always

Wednesday, January 20, 2016

redemption


Remember when I mentioned that there's a movie being shot in our town? Remember how somebody randomly picked Yoda out for a little scene? Remember how i was working that night? Remember how she was dressed? (Sweet Jesus how could we forget?)

Today we had a chance to redeem ourselves.

 


Kooka and Yoda were called as extras to shoot on set for a little bit today. Kooka loved it - the makeup chair, the waiting around in holding and then sprinting to the site, the seven takes it took to get the shot.



Yoda loved the lunchables I brought for her.
She also loved the lipgloss, and getting to wear her new hat.


I loved the fact that her hair was actually combed and her shirt didn't have yesterday's oatmeal down the front of it.



Punk also got to shoot a few days ago - but he's so old, he didn't need me hanging around - which means I have no pictures - but tons of good stories. In typical Punk fashion, he is always asked to play much older than he is. In this case, he was married to a 23 year-old that he's known since she was 10. He was also the father of her baby.  "Dang that baby was cute," he said. "I was married to Esme', and it was just like being married in real life. I brought her coffee like 15 times and she never said thank you. It's like she didn't even care."




Monday, January 18, 2016

summer



It's really not that I am trying to cram our summer vacation videos down anyone's throats. It's more that I can't believe that this was just months ago. I have been watching this obsessively all week, because it just makes no sense. It seems impossible that Rico is hula-hooping and paddle boarding with dolphins in July and two moths later he can't walk across the parking lot without getting winded. I think we'll just put a suggestion box outside our front door for anyone who has any brilliant ideas.

no reason

No reason for this post. No reason at all. This kid wanted to stay after class to take some dance pictures , so we did.  Too cold for leaps - but never too cold for tilts.






Sunday, January 17, 2016

what now?

We are lucky. We know we are lucky, but right now it doesn't make things easier.

We took Yoda to a hotel to practice swimming. Rico couldn't do much but sit in a chair and watch, but at least he was out of the house for a bit. 

And then the coughing started.

It's been going on for a little over a month, but not like this.

Even since the tooth thing, he's had wracking, nasty coughs, day and night. It's like this thing has a mind of its' own - like an ever-evolving super-villain. So tonight we are back in bed. We added some Tylenol and Ricolas to the pharmaceutical cocktail tonight. I'm not expecting him to get better tonight, but some sleep would be nice. 

Yoda asked why we have signs that say, "love is all you need"in our house if it isn't true. I'm still hoping she's wrong.


Saturday, January 16, 2016

just because





Just because we could all use a little dose of summer right now - and it makes me smile to watch all of us laughing.

Friday, January 15, 2016

in other news

When Punk showed me his WWII comic characters this spring, I thought they were cool. When he won an award for it at a local art festival, that was pretty sweet too. But when his art teacher called and asked if she could enter it (and another set of characters he'd developed) into the statewide scholastic art contest, Punk was really flattered.

For starters, according to Punk, there are three completely flawless humans working in our school district, and this lady is one of them. Knowing that she had faith in his work meant a lot to him. Secondly, his work is quirky, it's pen and marker annnnnnnnnd it's comic style. His words were something along the lines of, "I think it's safe to assume that the winners will be pencil/charcoal drawings of a girl who's either crying or half submerged in water."

I didn't think he was wrong.

So when he found out this week that he was awarded a Gold Key Scholastic Art Award (as well as a silver key for his second piece), he was more than a little surprised.

I must admit that I didn't understand the magnitude of it, but after further discussion with his teacher, it's apparently a pretty big deal. Gold Key winners get their art displayed in a fancy art museum and have their work sent to New York. 

The pictures don't really do the drawings justice - he's pretty good with color, but at least you'll have a frame of reference when you see it in the Lourve someday.

As for Rico, we watch and we wait, and wait and wait. 

Tuesday, January 12, 2016

what's good

Have you ever wished for something with all of your might?

I have wished that hard twice. Once when I was six and once this week.

I spent the past six days like Harry Potter with that sorting hat on, "Not Slytherin. Not Slytherin."

I could actually hear myself saying it out loud, "Just not this. Just don't let it be this."

When I was six I wasn't so lucky, but this time, it looks I've got my wish.

The good news, is that aside from a few ulcers, which were likely caused by the ibuprofin he was eating like Pringles during December, his scopes were relatively insignificant. There was a possibility of a bit of diverticulitis in his intestine, but again no huge findings. His spleen is "slightly generous" and his white count is still high.

Which leaves us here:

Nobody.
Freaking.
Knows.

Our next plans include:

A tooth being pulled and infection being cleared on Thursday. This was actually suggested by a local doctor and at the moment seems to be the only thing that makes any sense whatsoever. (Though at the same time - how 3 months of searching and a full work up at Mayo didn't lead to a giant abscess in his jaw is anyone's guess - so we are not pinning our hopes on this).

If the tooth thing doesn't show any promise, we head to a PET scan. If you're unfamiliar (as was I until two weeks ago), a PET scan is basically where they gather all of the radioactive sodas from Chernobyl or Three Mile Island or wherever it is they keep nuclear-waste flavored Dr. Pepper, force you to drink one and then see what "lights up" when they scan your body. It sort of looks like Doplar radar. The theory is that any cancer cells (or other crazy things that shouldn't be there) take up more energy and will therefore collect more of the radioactive waste, or whatever it is you've ingested, and light up the screen.

It looks like this:

 (No this isn't Rico, it's a black lab, but you get the idea).

He still has fevers. He's still weak, but yesterday was a good day. He got by with only one nap and one "rest" on the couch between 8am and 9 pm.  Tonight he felt good enough to help Punk practice his parallel parking for a while. (Thank God, because my advice was, "Just keep driving until you find a better spot - ain't nobody but nobody need to park THAT badly - that's why God invented legs.")

Sunday, January 10, 2016

note to self

We really are trying to do normal things, like cooking with Yoda and eating together and snuggles and learning to drive in the snow without the entire van sliding down the driveway on a sheet of glare ice while you watch movies with your girlfriend. 

 

 



Friday, January 8, 2016

where am I


Mayo clinic- what even is this place?

I've been here myself twice, but always as a participant. Being a spectator is a completely different experience.

It's like this eclectic mix of doctor's office, science museum, coffee house, art gallery and that giant info station that timeshares use to sign you up for a "free" vacation.

There are glass sculptures, and historical exhibits and mosaics from ancient Sumeria. There's a Dairy Queen, an entire hall full of 19th century medical instruments a grand piano where insanely talented people just sit down to seranade all of us hopeless saps who happen to stumble downstairs looking for a restroom. 

Clearly there is no shortage of money here, which is likely why the clay tablets from 100 AD are just hanging on the wall where any yahoo can run their Oreo Blizzard spoon across it.


Though God forbid that Dr. Mayo's good gallbladder removin' spoon should be exposed to fluorescent lighting. They store that creepy $#!+ behind two layers of tempered glass - right next to the first operating table used  (complete with blood catching trough underneath it).
Frankly, I think this whole setup is devised just to make you appreciate whatever may happen to you at this place.  "Oh, you need a liver transplant? Well, just be grateful you're not the sonofabitch laying on this wooden pallet while we removed his left testicle and a Siamese twin with this rusty spoon."

Damn.

Anyway, I am here for two reasons and two reasons only:
Rico's health and this:
This coconut cream pie. 
It's awful.
Terrible.
But I can't help myself.
It's like eating a bottle of Hawaiian Tropic suntan oil (don't pretend you haven't thought about it).

We're here today for Rico's scope, a couple of organ biopsies and hopefully some answers come next week. 'Til then, we'll just keep holding on.





Thursday, January 7, 2016

one step forward two steps . . . .sideways?

Yesterday was a consult with a local hemotologist.  He's not at Mayo, but we decided to keep the appointment anyway.  He said that he wasn't sure Rico's symptoms were going to be leading back to his office, but he did ask about his teeth.

"My teeth?" Rico said.
"Yes. Sometimes teeth can have very weird infections that even infectious disease guys can find difficult to spot."
"Well actually, I had a root canal that never felt right. It hurts when I chew, and the dentist told me to come back if it didn't settle down. That was almost a year ago."
"Then I'd go get your teeth checked as well."

So the oncology appointment was cancelled today in favor of an emergency dental visit. Sure enough, he was sent to an emergency appointment with an endodontist.

However, we're not pinning our hopes on anything at all. Dr. F from hemotology also said that there is fluid in the abdomen which most certainly needs to be looked at as well. Tomorrow we head back to Mayo for endoscopes. Blessedly the poor guy will be knocked out, so he can finally get some rest.

Thanks for the prayers, the support and all of your kind words. They never go unnoticed, even if they sometimes go unanswered (sorry).

Tuesday, January 5, 2016

dear rico

All of this is true - but wait for it - 2:10

never fails

It really never fails.

No matter how exhausted I am, no matter how absolutely heavy my heart is, no matter how lost my soul seems to be, I go to work and it is better.

Our lives do not change because of turns and leaps and harmonies and hip-hop - as a matter of fact, they just bring me back to reality. These are the moments that life is made of: music, smiles, Saija getting her splits, Kooka nailing a perfect triple, Clara showing me her sassy dance face.

I've been grateful for a lot of people this month - right now I'm especially grateful for 18 and under crew - the ones who create stories and magic and sparkly pieces of life with me. I would be completely lost without them. This is what life looks like - and they remind me every night.




Monday, January 4, 2016

back again

Today it was back to Mayo where we met with Dr. K, a diagnostic specialist. 

He told us that he uses four buckets to categorize initial diagnosis: autoimmune, viral/infectious, cancer and "other".

We sort of had our hopes pinned on the first two - which he was quick to eliminate, saying that it didn't appear to be autoimmune and if it were infectious it would likely have blown up in our faces by now.

This leaves two buckets.

No need to even point out why this sucks.

Our glimmers of good news lie in these things:
* He's been X-rayed and scanned and tested for everything they can think of, and everything has turned up negative.
* Viruses are always tough to detect and they always remain a possibility
* The small module on his adrenal gland. Although everyone has ascertained it to be an absolutely incidental spot, if it does turn out to be the culprit, he can have the gland removed without much drama.
* Nobody sees or feels anything on his lymph nodes.

Basically, in absence of anything obviously incriminating, Dr. K, has decided to take another look at these things:
* His iron deficiency, apparently it's quite rare for a guy his age to have it, and it could indicate something else.
* His very slightly elevated white cell count.
* Another look at his liver
* An upper GI scope ( and lower just to make sure)
* A cortisol/endocrine test for Cushing's Syndrome
* A possible sugar PET test

We will be at Mayo all week just to get through the barrage of tests he'll need. In the meantime he is weak, fevered, tired, and discouraged. It's fair to say that we are all a little discouraged. We don't even know what to hope for - do we hope they find something we can fight? Do we hope they find nothing?  We don't know. Right now we just hope to get through the week. His tests are scheduled throughout the day, starting as early as 6:45 am and running until late afternoon. 

Our immediate concern is just getting Yoda to and from school during Rico's appointments. We've had some wonderful help, but this juggling new normal is trickier than we thought- especially with a three-hour daily commute. I'm sure we'll find some balance. We got home tonight and Kooka had done Yoda's homework with her (and assessed it), Punk had started dinner and made sure they had after school snacks. Yoda fed the dog and made sure to give dad some extra hugs when he came home.

We're not sure what's happening, we just keep the love flowing and hope it's enough.





Saturday, January 2, 2016

over

It seems impossible that our winter "break" is coming to a close. 

I swear that we are just getting ourselves together, and now it's time to begin juggling the insanity that our regularly scheduled lives entails. 

Top of our list this week is heading back to Mayo this week. We do appreciate all of your ideas, and have a rather extensive list of things to ask about, including:

Neuroborreliosis (chronic lymes that is difficult to find/diagnose)
Guilin-barre syndrome
Oncology
Hepatitis (less common strains)
Bacterial infections

If you have other ideas, please feel free to add them to the list, we'll take all of the help we can get.