You Say Gnomey I Say Noma

Eliot has been calling Naomi Gnomey. Not gah nomi. No me. Gnomey.

All of a sudden yesterday he started calling her No ma. No ma.

Mama. What Noma doing?

No. Noma!

Where Noma.

When I was still pregnant with Naomi we came up with the name Naomi and thought a nick name for her might be Me Mer. The last syllable of her first and last names. Me Mer. Cute.

I laughed about how we'd give her a beautiful name and then end up calling her Me Mer.

Then Eliot started calling her No me and I thought - well - Naomi is now No me. She was destined to be called anything but Naomi.

And now No ma.

No ma.

Its kind of cute.

You think someday when Naomi is the queen of all butt kickers they'll refer to her as No ma?

And Now For My Daily Dose of Irony

I was on the phone a few hours ago with a friend whose daughter was just diagnosed with leukemia.

This family has been through hell really. Their amazing daughter has downs syndrome, she has had heart surgery (maybe even 2) and now she has leukemia.

How much can one family handle??

We were chatting and I was telling her how Eliot has 1 week left of the hard part of his treatment. I was telling her how things really have gone quite well and if this week is hard at least its just 1 week.

I told her how Naomi has cruised along this whole time mostly unfazed by the whole thing.

Then minutes later Eliot threw up. He threw up on his blanket. On his shirt. On his pants. On the couch. On the ottoman. On several towels.

He barfed supreme.

It was a major barf-o-rama.

He cried. He screamed.

Naomi cried. Naomi screamed. She seemed worried. She seemed freaked out actually.

Aron was tending to Eliot. I was tending to the mess. I was still talking on the phone.

Naomi was freaking out.

Yes. Just when I said things were great. Naomi was unharmed. Eliot was floating along like a beer bellied man on the Apple River our living room was filled with barf, our infant freaked out and Eliot screamed.

Ah yes. Just when I said we were in the clear.

To Naomi In A Few Years

Little girl you are one spirited little ass kicker.

You're direct. You're hands on. You're sure about what you want. You're damn sure about how you want it.

The world isn't always a fan of girls being like you and certainly not of women being like you.

They're going to tell you to be 'nice'.

Nice is a stupid word. It means nothing. Its not a goal. Its certainly not a way to behave.

You don't have to be mean. Or rude. Or mean spirited. Those aren't ways to behave either.

And being a brat is completely not acceptable.

Do without the nice tho.

Do without the 'be good' crap too.

Be you.

You is hands on and intense and certain and curious.

I'll probably be one of those ass holes who asks you to be nice. Or who asks you to tone it down. Or who points out that you might get more cooperation from the world if you'd ask nicely.

I'll probably get really mad at you when you tell me to stick up right up my ass when I say that. And I do hope that's what you say.

Be good to yourself and be you. And you has many faces. And you has many ways of being. And you doesn't have to fit in. You can get your hands dirty in life. You can speak up when things don't seem quite right. You can be a lot of things.

Do those things. Be you. My heart will break the day you start being nice because you're supposed to be nice. It will break in a million pieces the day you tone yourself down for fear of being seen as too direct or too smart or too loud.

Be a good, kind, giving person while you get up in people's faces and say what you see.

Putting Things Together

This is something like (and not even nearly as awesome as the actually) a conversation I had with Eliot tonight while standing in the front yard in the middle of a rain storm.

E: Whats that noise?

ME: Thunder. It happens after lightening? If we watch we might see a big flash of light. That is lightening.

pause

E: Lightning McQueen?

ME: Lightening McQueen is named after lightening that happens in a storm.

E: Lightening McQueen is in the sky? Race car in the sky?

ME: We won't see Lightening McQueen in the sky. Lightening is drawn on the side of McQueen's car.

E: Big light on race car.

ME: Yeah.

The Glory Days

Sunday was one of those days that the memory of I will use someday to inadvertently torture some disgruntled stay at home mom by telling her the years I was home with my kids were the best years of my life.

After the kids got up from their naps we went to Lake Calhoun and had a picnic and threw rocks in the lake and flew a kite and walked along the beach and laughed and had a completely fantastic time.

We met a family with a 6 week old baby that was even bigger than Eliot was when he was born.

I gave them some baby wipes because they had run out. I got to tell them it will get easier and that they look great and are doing a great job. I got to feel like a skilled mother.

They were the first people we don't know to ever ask about Eliot's bald head. They just assumed he was a baldy kid. They said he looks so healthy they never would have guessed he is in treatment. Which I guess explains why absolutly no one else has asked about him since his diagnosis.

Its true too. Eliot was supposed to be throwing up this week and really tired.

Not.

He has been in good spirits and feeling great all week.

If this is your kid.



And this is your kid on chemo.




How wild and crazy must your kid be when the chemo goes away?

Watch out world here comes one seriously energetic and hearty kid.

My Belated Mother's Day Post This Is Meant to Be Funny

Sung to the tune of Kyle's Mom is a Big Fat Bitch from South Park.

Eliot's mom is a big fat bitch.
She's the biggest bitch in the whole wide world.
She's a stupid bitch if there ever was a bitch.
She's a bitch to all the boys and girls!

One Monday she's a bitch.
On Tuesday she's a bitch.
On Wednesdays and Thursdays she's a bitch.
On Fridays she's a bitch.
On Saturdays she's a bitch.
On Sunday's she's a super mega mega biyatch.

Kaaaayyyyyle's mom's a biiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiii chah.

That's as much as I can remember of the song.

I just put Eliot in his bed. He was in his pack-n-play in the room with Naomi and they were having an amazingly good time. This afternoon they spent 2 hours together goofing around in there two before they both passed out for a nap.

Here's to me and all the women out there who do totally bitchy things in the name of their children's well being.

Yeah mom! Go mom Go.

I Could Do THIS All The Time

The past few days have been pretty chemical free. Eliot has had the week off of meds and finally yesterday and today felt like days without steroids.

We have laughed and laughed and laughed and laughed and laughed.

Eliot and Naomi have played together. I even sat and read a book while they played yesterday.

Over the weekend I talked with a mom who had a sick kid until he was about 2. She didn't know he was sick and just parented along. Just like I did.

After he had the treatment he needed (tonsils and adnoids or something removed) he started talking and growing and learning and reading books and stopped clinging to her at every moment in every new situation and became much more of a normal kid. Whatever the hell normal is.

We were talking about how burned out we werewith these super clingy kids and how different it is now that our kids feel good.

The last few days I've been thinking about how I could totally do the stay at home mom thing.

I realize having two healthy kids can still drive a person batty - the precarious financial situation, the long hours, the tedious chores.

I also got the honor of watching my two kids chase each other around 3 times today. I got to sit on the front step and play with my kids for hours yesterday. I read a book while they played together in the sand box. I sat leisurely at the breakfast table the other day balancing cups on my head and Eliot's head and laughing deep belly laughs when they fell on the floor.

If only I could be paid to do this. I mean paid something that would fill up my retirement fund and buy groceries that is.

This is How Tired I Am

I haven't had a nap in a few days. I've been up until at least 11 the past few days and woken for at least an hour in the night and then been awake at 5 am. Aron let me stay in bed until 8am yesterday morning.

Despite his chivalry. Yes. That is modern day chivalry in my book. I'm tired.

I'm so tired that last night when we invited our neighbors over for awesome shaped pancakes (which Aron made, more modern day chivalry there for you) we forgot to give them forks with which to eat.

They sat politely waiting at the table. I commented about how we didn't have syrup and the pancakes were just so cool we had to show someone. Aron wrote all of our names and made cars and trucks and special body parts for me. There was a turkey baster involved. It was great.

They still sat politely not eating while Naomi stuffed her face full and Eliot had a little melt down.

I could not for the life of me figure out why they weren't eating their pancakes.

Finally. Probably when their pancakes were cold they dug in.

Just now. At 4am it finally occurred to me.

We never gave them forks.

Just plates with pancakes.

No forks. No butter. No syrup. We never even offered them anything to drink.

Part of that can be blamed on my utter lack of hostess skills.

Okay. I admit a good part can be blamed on that.

The rest. Mainly the fork part and the nearly 7 hours to figure that one out - can be blamed on sheer exhaustion.

Nice!

Mama Say Thank You?

Today while Eliot and Aron were downstairs watching Cars the movie on our big tv some amazing people dropped off a bunch of yummy food - including 3 (count them 3) boxes of my favorite Girl Scout cookies.

When Eliot came up stairs I offered him a plate of mac r' cheese and told him that our friend Gloria brought it over.

He sat there for a bit and then said, "Mama say thank you?"

He wanted to know if I said thank you.

Holy cow.

Thursday Update

Elliot's appointment today was just a quicky. They took his labs to see how he is doing, checked him out and sent him home.

His labs are doing fine. It would be a major surprise if we can't get started again next week with the sixty gazillion forms of chemo he gets next Thursday.

They even warned us that next week is going to be a loooong week at the clinic.

Sigh.

In the mean time Eliot just finished his first day without steroids.

He slept a lot today.

A lot.

He took a nap in the morning and a gigantic nap in the afternoon.

Right now he is out for a late-night field trip to McDonald's with Aron.

His voice is strangely squeaky today. I'm not sure why.

His cheeks are super round.

His hair is coming out like crazy.

He still feels pretty yucky.

And he gets the week off of medicine. Tomorrow is bound to be better than today. Saturday is bound to be better than tomorrow.

Today wasn't really horrible.

Arm Pumps Baby

We made it.

There are no more steroids in pill form in our house anymore. The bottle is full of only air and steroid dust and its in the garbage can never to be seen again - unless of course Naomi digs through the poopie diapers and slime from the bottom of the kitchen sink to retrieve it and suck on it which is entirely possible.

Whew.

We made it.

I imagine Eliot will be up to eat tonight. He might be up twice. He'll probably wake up early.

Or since we have an 8 am appointment he'll sleep in and we'll have to torture him further by waking him.

He did laugh today. He did smile.

He also farted disgusting Sara-like farts all day and then filled his diaper with about a half gallon of pudding right before bed.

The poor kid was home with my saint-like mom while I was out gallivanting at the park with Naomi (and having an amazing conversation) with a diaper full of mud lying on the floor in front of the door waiting for me.

Dear God. The sadness of coming home to that.

Soon enough he'll feel good again and have normal poop and feel better and I won't feel quite so awful for leaving him home.

He moaned a lot today.

And his stomach hurt a lot today.

And he ate everything in sight today and my mom went to the co-op no fewer than 5 times today and more like 10 to get him treats.

He layed on the couch today and just layed around.

Some part of me is able to see beyond the horror of this and know its all for good. Some part of me is also able to just detach in a way so that I don't feel how sad it is. Some other part of me has learned how amazingly resilient kids are and is able to trust that he really is okay no matter how bad this looks. Some other part of me is so tired I can't even take anymore in.

We get a week off of medication starting right now and ending next Thursday morning.

Then we're on meds for 2 weeks. Pretty intense meds. He'll have his port accessed for 4 days in a row, twice during this next intense time.

His hair is falling out quickly. I bet he'll have a shiny dome by the time this is over.

I haven't taken nearly enough pictures.

Someday I bet I'll regret that. Right now I don't know how I possibly could have remembered to take more on some of these crazy days.

We made it through this super scary time. We're on the other end. We're still okay.

Oh To Scream

I know logically that going upstairs right now and screaming my head off at Naomi will not in any way, shape or form cause her to stop screaming like a banshee.

I know this.

Me screaming would probably scare the crap out out of her. So I guess she might stop screaming for a split second.

And then it would start again.

I know my screaming fit would do nothing.

Well except harm the crap out of her and give me more motivation to save for therapy instead of college.

And I'm still fantasizing about going up there and screaming at her. Like screaming so hard my head hurts.

Boy. Parenthood shows me sides of myself I never, ever thought I'd see, ever, ever.

Grrrrrrrrrr eat!

Today has been by far the worst day of Standard Delayed Torture.

Eliot was up at 1am and again at 5am.

Naomi was up at 6am.

Naomi and Eliot are crab apples. Major. Major crab apples.

We had to go pick up more medicine because for some reason we're two doses short. Oh the urge to not go get the medicine and be done with this now!

Naomi and Eliot skipped their naps today.

Eliot's hair started falling out again.

Our front wheel on our car is making weird noises - I'm sure they're weird and expensive noises.

Aron has a fever, achy joints and liquidy stuff retreating from his rear end in great quantities.

I'm suddenly afraid we might all get our own version of his affliction.

If Eliot gets that we'll be in the hospital.

I'm tired.

Things can only get better than this.

Right?

Edit

Only a fool temps fate like that. I received a text message from Aron about an hour ago.

I just barfed my brains out.

I'm at the Ramada.

Please God. Please God. Let the rest of us feel healthy and fine through all of this.

Let Aron's bug be a special bug. Just. For. Him.

More Unexpected Tears

I set up my donations web page for the Twin Cities Marathon run I'm doing with Team in Training just now.

They give us a ton of tools to help us raise the $1700 we need to raise (for every $1 I raise 75 cents go to the Leukemia and Lymphoma Society).

I was going through pictures to find one of Eliot to put up there - because I'm racing in honor of him.

I found all of these pictures from when he was in the hospital (which I'd show you except I can't seem to get Google to cooperate right now) and started crying.

He had hair. He looks so little. His face was all skinny (which it isn't right now), he seems naive to me, so innocent in those pictures.

Sigh.

My little boy is still a little boy. He is also now closer to 3 than he is to 2. And he has had to do some growing up in the past months.

Sigh.

Well. This race is something I can do. Its something tangible I can do to hopefully prevent other little boys and girls from having to do extra growing up when they're little.

I also hope it will be a good way for me to make friends with people who don't think of me as a priest's wife.

I'm also hoping I'll loose a bit of this 'holy shit my kid has cancer oooh I think I'll eat' weight.

If nothing else all of this crying should certainly cause some water weight to be shed.

More Unexpected Tears

I set up my donations web page for the Twin Cities Marathon run I'm doing with Team in Training just now.

They give us a ton of tools to help us raise the $1700 we need to raise (for every $1 I raise 75 cents go to the Leukemia and Lymphoma Society).

I was going through pictures to find one of Eliot to put up there - because I'm racing in honor of him.

I found all of these pictures from when he was in the hospital (which I'd show you except I can't seem to get Google to cooperate right now) and started crying.

He had hair. He looks so little. His face was all skinny (which it isn't right now), he seems naive to me, so innocent in those pictures.

Sigh.

My little boy is still a little boy. He is also now closer to 3 than he is to 2. And he has had to do some growing up in the past months.

Sigh.

Well. This race is something I can do. Its something tangible I can do to hopefully prevent other little boys and girls from having to do extra growing up when they're little.

I also hope it will be a good way for me to make friends with people who don't think of me as a priest's wife.

I'm also hoping I'll loose a bit of this 'holy shit my kid has cancer oooh I think I'll eat' weight.

If nothing else all of this crying should certainly cause some water weight to be shed.

On This Episode of DIY Elevator

Two grandparents, their daughter and her 2 children walk into an elevator, press the button for their floor and watch as the door closes 65% of the way.

They push the 'open door' button.

It opens just fine.

They push the 'close door' button and it closes 80% of the way.

In a feat something like you'd see in an old Super Man movie mom of the two children literally closes the elevator door with her own 2 hands.

Stay tuned for next weeks episode when co-eds reach floor 5 1/2 and climb to floor six.

12 Pills To Go

Eliot has hit that yucky tired, sore, hungry, annoyed, sleepy, stomach ache, weird poop, mouth sores (something he didn't get last time) place with steroids that caused me so much anxiety before this all began.

He has been getting up in the middle of the night.

His sweet face is all swollen and if I still wasn't having this annoying (only because I caused this situation) camera thing I'd show it to you.

He clearly feels awful.

He did smile some today. Particularly when our neighbor Summer came over.

He actually smiled a lot when she came over.

He smiled so much that I asked him if he has a crush on Summer and he smiled some more and said 'yeeeeahs'.

We all love Summer at our house.

Apparently Eliot loves her the most of all of us.

There are 12 more pills, 4 doses, 2 days of steroids left.

God be praised.

We're so close.

Deja Vu

Yup. Its 12:17am. Eliot has asked me repeatedly to get me more food and to not sit with him.

He is very clear about the not sitting with him part.

Wonderfully he has used please every time he asked for something. For the food. For the more food. For the different food and every time for me to move away from him.

And.

I just saw a mouse.

Its absolutely beautiful outside these days yet the mouse (mice) is (are) still living IN our house.

I'm tired. Its the middle of the night. And I'm pissed off.

Someone told me the other day I've gone through this whole cancer thing with dignity and grace.

That might be true. Maybe.

This rodent thing. I'm not feeling dignified or graceful.

I heard one rattling around in our basement ceiling (right above where I was napping today) and I yelled a string of swear words at it I won't even repeat here.

Not cool.

How Did We End Up With Beautiful Children?

Today just blew me away. Our kids are so beautiful. They're beautiful and cute too.

I know all parents think their kids are the most beautiful children in the world. I'm no different.

I also looked at my kids today and thought, even with Eliot's puffy steroids face, that both of our kids are cute. Like other people think they're cute. They're cute kids.

I took some really wonderful pictures of them today and if we weren't having a bizarre confluence of camera mishaps (we can get pictures off the camera that has no batteries and can't get pictures off the one that does have batteries) I'd show them to you.

Thursday Update

Today was Eliot's final does of the scary heart drug and a quick check up at the clinic.

They're still amazed by us. They're still amazed that Eliot hasn't been back to the hospital.

He is doing well on all of their measures but one.

His neutrophils are low so we need to be ultra careful about people with colds and risky germy situations.

We have steroids (which now have made him pretty much insane - its going to be a bit of a long week) for 6 more days. Then we get 7 days off.

If Eliot's neutrophils are still low they might put off the next part of his treatment. That would be fine. I'd be bummed if it happened because I'm so ready to be on to the next part.

Its not guaranteed to happen.

Its just a maybe.

Which would mean that June 21st wouldn't be the first day of maintenance.

It would just mean it would be put off a week or two.

This is really still great news. He does smile and have fun during the day. He has a lot of stomach aches and his knees hurt and he is consistently decisively indecisive.

He has gained 2 pounds and has a poof ball face and a big belly.

He is also healthy and at home.

And for that we are considered amazing. And for all of that I am grateful.

And I'm so tired right now I can't tell if this post makes sense or is a bunch of mumbo-jumbo and instead of trying to figure it out I'm going to bed now.

Day 14

One week from right now Eliot will have received his last dose of steroids.

His last dose of steroids during Standard Delayed Intensification or what I used to call Standard Delayed Intimidation and now I'm thinking of as Standard Delayed We're Almost There.

We've made it two thirds of the way. He is tired. He is a bit crabby. He eats all day. He has weird pooping situations all day. His legs hurt. I think everything on him hurts.

He is also happy and playing and interested in things and talking like a wild man.

Its amazing. Its just so much less awful than I thought it would be.

Naomi is bigger. He is more able to communicate. She is more able to communicate. They both walked up the steps for their nap today - or was it yesterday.

The weather is good.

We're going to make it through this.

We are.

I don't even have to say that in the way you say things to convince yourself.

I know we're going to make it.

Happy. Happy. Happy Dance. Complete with arm pumps baby!

Firetruck

That is what I heard over the monitor just before 2:30am today.

Firetruck!

Loud and clear out of Eliot's mouth.

Then nothing for nearly 40 minutes.

Just that.

Firetruck!

Ha! It cracks me up.

Our kid is talking in his sleep about fire trucks.

You can give a kid a baby doll who he loves and carries around with him and when push comes to shove he yells out fire truck in his sleep.

Fifteen Its The Magic Number

My wise friend pointed out to me that the first 12 months of a kids life are really, really hard and they actually last for more like 15 months.

She is so wise and so right.

Naomi turned 15 months old a few weeks ago.

Since then so many amazing things have happened.

We had friends over for dinner and when the kids were done eating they both got up from the table and went into the living room and played together. We sat in the dining room and talked. All four of the adults sat and talked for a while. It was amazing.

Yesterday while I was filling up the bath tub Eliot and Naomi ran around the upstairs playing together. I was able to be in the bathroom gathering towels and soap and all of that bath time stuff while they played. And they were playing together.

Naomi has started feeding herself with a spoon and a fork.

I've actually sat at the dinner table with both of my kids and eaten a few bites of warm food from time to time in the past few weeks.

Naomi plays by herself for a long time. Sometimes I feel a little guilty. I wonder if I should be playing with her more. She just seems so happy to sit and play with toys and do her own thing.

They can both climb up and down the stairs on their own now. Several times in the past few weeks I've walked from the upstairs of our house to the downstairs of our house with both children and haven't been carrying either one.

Its amazing.

Things feel much less hands on.

I can only imagine what it will be like when Eliot's treatment gets easier and he isn't feeling as sick-o.

Aron About Eyot

Aron wrote an amazing post over on his blog.

Its wonderful. Check it out.

Oh Yes Thats What 3am Is Like

We made it through 8 days of steroids without too much craziness around here. We made it through 7 whole nights of sleep.

Friday night Naomi woke up screaming at 3am which woke Eliot who wanted to eat and eat and eat for an hour.

Last night Eliot woke up at 3am again and wanted to eat and eat for a whole hour.

So we're back to steroid life.

Luckily this time we know what Eliot wants and have the house stocked up and the appropriate utensils clean so instead of having an angry tyrant we have a basically delightful kid up in the middle of the night.

This morning he was feeding an imaginary spider his spaghetti and his water. It was very, very sweet.

Today is day 11 of 21 days of steroids and 50 days of intensification.

We're getting there slowly but surely.

I Did It - I Might be Nuts

Okay. I think I'm a little crazy.

Several people have urged me to put the call out for financial help. They've reminded me that people want to help and its hard to help from far away.

I put info up on my other blog about how you can help us financially. Its kind of a sponsor a week of pills kind of thing.

This is not a 'fee for use' for reading the blog. If you can and you're inspired to, we'd of course love your help. If you can't that is absolutly a-okay.

Day 8

Today marks day 8 of Standard Delayed Intensification.

He received 2 kinds of chemo at the clinic today and continues his steroids. He was definitely more tired and his knees hurt more and he is crabbier. He is more intense.

He layed around a bit today. He wanted to go upstairs and rest.

When it was time for bed he seemed almost relieved.

We've had 7 nights of sleep and 7 days of him napping.

Yeah! Even if it all goes to hell tonight at least I can rejoice in having just 2 super hard weeks and not three.

He still has his hair. He is still walking. He is still having fun talking 2 to 3 'nice walks' a day. He cooked with Aron today twice. His life looks like the life of a 2 year old. Mostly.

Life With Cancer

This picture was taken over a week ago. This is life with cancer for Eliot. Bald. Painted. Surrounded by containers of Clorox wipes. Focused. Basically a two-year old in a sterile and completely unorganized environment.

Today is day 7 of standard delayed intensification. Eliot has slept through every night so far. He has continued to feel basically good. He is a bit more intense. A bit more indecisive. A bit more hungry. He is also still having a good time. Still playing. Still walking.

He has complained of some knee pain which is expected and some tummy pain which is also expected. So far so good.

He is still walking and running. He had a hard time climbing into his stroller this morning. That could have been a ploy for my attention. I'm not sure.

Life is pretty awesome in chemo-land.