Exerpt from Naomi's Field Journal

Filed under experiment number 7. Code name 'loud noise'

Hypothesis - banging hard items on other hard items produces a delightful noise.

January 31 field notes - experimentation continued throughout the day. I have continued with my regiment of banging for a minimum of 15 minutes each hour. This experiment continues to make me laugh. I'm so glad I included the word 'delightful' in my hypothesis as the noise I've been making truly is that. Delightful.

This work is leading to new insights. The best sounds seem to come from things mom calls 'fragile,' 'breakable,' 'special,' and 'not right now, Naomi.' I'm sure future experimentation will clarify these classifications. In the meantime I'll continue my work.

It Starts Again in the Morning

Tomorrow morning Eliot goes under anesthesia and gets chemo in his spinal cord. After that he'll get a push of chemo in his port and we'll start him on oral chemo tomorrow night. This is what we were supposed to start last week and delayed because of his blood counts.

It feels good to think about getting started on getting this worse part over. Oh wait. That was a lie. It doesn't feel good to me. Even tho I know in my rational brain that this is a good thing its breaking my heart in two sad, lumpy pieces.

Today he ran and goofed around and climbed out of his own bed and under his bed and under Naomi's bed. He climbed up the steps and onto the couch and onto the chair. He talked in a goofy voice. He talked loud. He ran around and laughed. He jumped on Aron.

All normal 2 and a half year old things. Perfectly normal. I could be wrong. Tomorrow could be the same. Most likely tho, he'll be tired, he'll feel a little sore, his feet might feel tingly, he might get a bit crabby again. he might puke. Sigh. Sigh. Sigh.

They let us out of hell for a week. Tomorrow we're going to walk right back into the flames. It makes me think of using some of the words people have been punching into the game I've been talking about on my other blog.

Oh shit. I'm going to carry my kid right back into hell tomorrow morning. Willingly. Knowingly. I hate this. I. Fucking. Hate. This!

Walking

Naomi has been doing laps around our outhouse for over a week now (gosh perhaps over 2 weeks). She just needs an adult to get the chair around the corners. Otherwise she just cruises along. Today she walked a few steps on her own. She walked from the ottoman to the couch this morning. This evening she walked a few steps from thin air to me. Just a few steps. A few steps tho. Our little girls is walking. I'm thrilled. I'm proud.

I'm nervous. After all this little angel is the same little one who made this face.

Holy Good News Bat Man - Financial Situation Update

I got great news from our health insurance company. We did read the information they gave us correctly - our family maximum payment each year is $5250. What I didn't read correctly (and I swear it doesn't say it in there anywhere) is that we pay a maximum of $2000 for each individual.

What we thought was our responsibility financially is more than likely less than half what we thought it was. Sigh of relief. Sigh of relief. Big sigh of relief.

We have received generous gifts of money from people totalling $2850 and after paying for all the bills we've received so far (which does not include our hospital bill) from this separate account we opened we still have $2606.66 left.

Hanging out With Papa

My dad was in town the other day and he and Eliot got to spend some time together. My dad hadn't really seen Eliot since one day in the hospital that was particularly busy and full of pokes and prods and temperatures being taken and doctors in and out of the room and exhaustion. That day was pretty much without quiet time on the couch and playing. This was much, much better.

Racing with Uncle Luke

We've had a chance to play with Uncle Luke a lot lately. Eliot and my mom and Uncle Luke and eventually Naomi all raced cars together the other night. I hear Eliot and Uncle Luke took medicine together too.

Nothing like a cool Uncle Luke to help the medicine go down, the medicine go doowwwwn, the medicine go down. Just a cool Uncle Luke to help the medicine go down in the most delightful way.

Our Puppies

Naomi and Eliot have been playing together a lot, especially the last few days. My mom caught this picture of them just rolling around and having a blast on the floor together. The other day (I really don't remember when - what day is it today???) Eliot, Naomi and Isadora all rolled around together in Isadora's tent on her bed. They're puppies. I swear if we left them for long enough (like 20 or 30 hours) they'd all pass out in a pile of sleeping legs and arms. Who knows, they might all grow tails.

Could be Any Two Year Old

My mom caught these three pictures the other day. If Eliot were a healthy two year old I might not feel the need to post all three. Well, then again I might. I am a mom after all and the lighting is awesome in these and well, I digress.

These pictures are exceptional to me tho. Eliot is standing up to play. He is focused and having a blast. He is standing up to play. He is standing up to play. Oh my gosh he is playing.

You can also see his amazingly silly hair do too. His hair cut is extremely long and grown out and extremely thinning. He doesn't seem to mind at all. What he does mind is hair cuts. So he has a really funny hair cut. Its sort of a mixed up mullet. Too long really in all the weird places.

One Year in the Blogosphere

January - the blog started with one lonely post that month a year ago today.

February - We announced Naomi's arrival via the internet, Eliot pronounced his first word and got his first green balloon, Naomi shared her two cents at church and I became a mom for real.

March - Lots of fun pictures were posted. Note especially Eliot's first sips of wine and the start of Naomi's political career.

April - The wolf got a kiss, I realized that I'm crazy for girl clothes, Naomi was baptised and Eliot gathered all of us around him.

May - Eliot had his first night away from home without mom and dad and a Homeland Security file was nearly opened on Naomi.

June - Naomi and I went to General Convention and heard people say lots of, well, odd things and Eliot stayed home and had a great time with daddy.

July - Eliot turned two and we started to realize that we have a bit of a party girl on our hands.

August - August was a month of a lot of 'sacraments'. Skim through the month. You'll see poop and snot and puke and new teeth and water.

September - We went on a great vacation.

October - We discovered that Eliot knows Jesus I started a fast and apparently fasted nearly all month on posting anything at all about Naomi other than her enjoyment of the water.

November - Naomi and I went to Washington DC and saw history and New York City too all in one month and we had some incredibly warm weather and really quite an amazing month.

December - A lot happened in December. A whole lot happened.

Our First 'Set Back'

We went to our appointment yesterday expecting to get a triple or quadruple shot of chemo. To bring our boy home and perhaps have him tired, sick and even puking. Perhaps just tired. Perhaps just a little crabby. Perhaps feeling just fine.

We signed him up for the next phase of the leukemia study and found out that he is in the 'standard care' arm of the study. I have to admit I'm happy about that. The other arm included 4 extra shots of a drug that could potentially (although this is very rare) send him into anaphylactic shock (this is a drug he'll get anyway - we weren't putting him extreme, unnecessary harm - it just felt a little scary).

As it turned out tho Eliot's neutrophil levels were too low to start his treatment. So they sent us home. No chemo at all. No oral chemo. No shot in the spinal fluid. No push in the port. No extra shot in the leg. Nothing.

They called later and said to go ahead and skip one of his medications this week to give his liver a break (his liver numbers are a bit elevated).

This means we get a week off. No chemo. Only 20 total mL of drugs total this week. And those just on Monday and Tuesday. His tiny little body gets a break from treatment.

Its something you could call a set back. It means his 3 and a half years of treatment is now 3 and a half years and one week long.

I don't mind a bit. They're not worried about his liver. They just decided to give it a break (lots of the drugs we're giving him will mess with his liver a little bit - this is not totally unexpected). They're not worried about his progress. His low neutrophil numbers might mean he is fighting a virus. So far he is fighting it well. He is in a great mood, he looks and acts and eats like a happy, healthy kid.

This set back is a vacation. A respite. A chance for Eliot to be 2 and a half.

For the first time in my life being 'behind schedule' is welcome. Its relaxing. Its delightful.
Yeah for a vacation. Yeah for a break. Yeah for getting started again next week. Yeah for kicking some cancer ass and moving forward.

Happy Dance

Yeah! Yippie! Yahooey! Woo Hoo! Happy Dance! Happy Dance! Arm Pumps! High Knees! Wiggle your Boo Tay!

Eliot is in remission. Real. Official. Super Duper Extra Special Specific Remission!

Give me an R - R
Give me an E - E
Give me an M - M
Give me an I - I
Give me an S - S
Give me another S - another S
Give me an I - I
Give me and O - O
Give me an N - N

Whats that spell?

Extra super duper official REMISSION!!!

They can't find leukemic cells in Eliot's bone marrow or spinal fluid. This is the absolute best news we could get (well other than - oh hahahah you're M-TVs new reality tv show - fuck with your life and see if you snap - you're kid's been perfectly healthy all along).

Eliot has Standard low Pre-B Acute Lymphosomething Leuemia he is a rapid responder with a low risk. This means he'll have the least intense treatment and if I heard correctly the shortest too.

Woo hoooeyyyy!!!

He'll start his next phase of treatment tomorrow (called intensification). They'll give him chemo in his spinal cord, he'll get vincristine (a kind of chemo) through his port, he' might receive pre-asperiginase in his legs and he'll start on oral chemo (which he'll take by mouth twice a day in a syringe).

After this phase which I think lasts about a month he'll be in a phase called something like interim maintenance - he'll have less intense treatment for a while. Then he'll go into another more intense phase and then into maintenance (which should start no later than the end of June).

Arm pumps baby. Arm pumps!

Mama Sit Table

Eliot asked me to sit at the table during breakfast this morning. He asked me to sit down at the table with him.

Today is full of that and other amazing little wonderments that make me so happy.

He got himself from sitting on the floor to standing today all by himself (something I called Aron about). He drank out of a glass that wasn't on the super short list of acceptable eating and drinking accoutrements. He has laughed and laughed all morning. He got his car trailer hooked up to his truck by himself. He put together his train by himself.

He laid down on Naomi's lap this morning too. She ended up crawling over him and he wanted her to lay on his back. After she did a few laps around the house I put her on his back. He was laying on the kitchen floor on his belly and she was laying on her belly on his back. She put her head right down and sucked her thumb. He smiled so big I thought his gigantic cheeks were going to pop.

There are more posts over on my other blog too http://saramcginley.blogspot.com

Great News!!

So we got word today about Eliot's diagnosis. Not the extra, super final word. That will come on Thursday. Today's was the pretty much final, mostly final, enough final to schedule the next appointment, we'd be real surprised if this isn't the deal diagnosis.

It appears that Eliot has Standard Risk (low) pre-B Acute Lymphoblastic Leukemia (ALL) with the TEL-AML something-or-other and is in the rapid-responder low-risk group. If you, my wonderful reader, are a doctor who knows what they're talking about or if you've done any reading or know anything about this stuff you're probably laughing. This shows what I remember about what I'm told.

The good, awesome news is this. From everything I can tell this is the best news we could get.

ALL is common, being in the standard risk low is good, having TEL-AML is good, being a rapid responder is good, being in the low-risk group is good, not having leukemic cells hanging out in the testicles and brain and other frightening areas is all very, very good.

Eliot will get a spinal tap the next three week so they can put chemo in his spinal fluid. He'll get a shot of chemo through his port (which takes a very short time), he might get a shot in his legs and he'll start on oral chemo-therapy.

So what seems to me like a pretty hard-core dose of medicine is coming his way. We'll learn more about what this means on Thursday and beyond as far as his quality of life is concerned. From what I can tell it means he might be tired and sore and might need to take some anti-nausea drugs. His hair will keep falling out.

We also expect his face and shoulders will deflate and he'll continue to have an easier time walking.

How Did I Give Birth to Laurie's Child??

Playing with Stickers

Eliot has spent a lot of time hanging out in the red chair looking at, sticking and re-sticking his Thomas the Train stickers over the past two days. Its sooooooo amazing to see him focus and have fun and sit by himself and be happy. You can see - if you look closely - his thinning hair on the top. This picture was taken yesterday and its even a bit thinner today.

Tee Hee Hee. Tee Hee Hee. Tee Hee Hee.

One of my children used a crayon to color part of the floor and the bathroom door today. One threw about 40 blocks all over the dining room floor. One played quietly by themselves for a long time. So did the other. One skipped a nap. One tried to initiate a squealing exchange at lunch. One wasn't interested. One played peek-a-boo around the milk carton, the other one played too. One sat and giggled with me for well over 20 minutes just now as I made faces. One has been giggling at just about everything today. One figured out that you can walk around holding onto the wall. One climbed the wall. One had the baby doll and then the other baby doll climb the wall. One wanted to see all the mouse droppings behind the refrigerator.

A week ago if I could have read this post I would have guessed Naomi was the giggling, squealing, poop intrigued, peek-a-boo playing, wall climbing activity girl. Not today tho. Eliot has laughed and laughed and giggled and squealed all day. Naomi has been rather sedate (by comparison to her super happy big brother) - except of course when she discovered the amazing stationary quality of the wall - and an hour earlier when the dining room chair she was using to hold herself up got caught on the table.

Parenting just got utterly and completely different. Not only do I now have a toddler - Naomi is so close to walking (and I'm assuming running shortly thereafter) - instead of a baby. I also have a kid who has the energy and interest in activities of a two and a half year old. Eliot's intensity is now energetic too.

I feel like a door opened this morning. We're on to a new stage. Another new normal. A really, fun, silly, energetic, delightful normal. I keep crying about it its so f'ing fantastic.

Beautiful. Beautiful.

Gosh did you ever notice how many vowels there are in the word beautiful?

More Cupcakes

We had Naomi's birthday party yesterday morning and she got to enjoy some more cupcakes. I stripped her down for cup cakes take two. Auntie Laurie sent me this picture. I think she is very proud of her little junk foodie baby niece who looks spookily like her.

Heeeeeees Baa ahk

Eliot was back all day today. 'Roids Eliot has left the country. We've organized to have him accosted should he try to return. Eliot is back.

This is what we he today (I'm sure this is an incomplete list because man he had a busy day):

• slept through the night
• jumped in a pile of clothes (which looked like rolling around on it and laughing)
• jumped on a pile of blankets (which looked like rolling around on it and laughing)
• initiated hide and seek
• initiated making a fort in Arlo's bed (the back and play Arlo sleeps in when he visits that is in Eliot's room)
• ate food of a plate other than the red plate
• ate lots of food that wasn't bow-tie-pasta-cut-in-half-with-cheese-on-top
• laughed and goofed around with Naomi
• laughed when I tickled him
• played in the water with Auntie Laurie
• floated 'boats' (raisins, milk, crackers) in the bathroom sink and got totally soaked
• took a 3 hour nap
• sat and played contentedly with his Thomas stickers
• sat and played contentedly with cars
• let Mama sit at the dinner table with him
• walked a lot
• crawled a lot
  

He also watched Cars a little bit and played on the Thomas the Train web site a little bit. He also had a major crying fit after I accidentally woke him up from his nap (paranoid mom thought he might be having a major fever up there or something). I of course got more paranoid when he cried nad cried there for a while and thought for sure somethign was wrong with him (oh where did Sara the calm we're doing fine mom go?).

Eliot's sweet, fun, playful, contented self is back. He is also louder. Sillier and more curious it seems to me. He has energy. He has serious desires. This is our boy. How long has he been hidden by this disease?

Change

I just found this picture. It was taken four days ago. Eliot has changed so much. I think his face is puffier. His hair is a lot thinner now. He is a lot happier now too.

Isn't this a beautiful picture. I really love it. It captures that day for me. Isadora. Two and a half. Doing her thing. Eliot. Two and a half. Doing his thing. Together. Buddies. Totally on their own.

Our Boy is Back

Eliot slept through the night last night. He played on the floor. He painted. He ate food other than bow tie pasta with red sauce, cut in half with cheese on top on his red plate.

He laughed. He walked a lot more today than he has in days. He went to bed at his normal hour (not 4:30 in the afternoon). He giggled. He goofed around. He helped me cook.

He put a pinch of salt in the salad we made today and it was the sweetest, tiniest, most wonderful little gesture I've perhaps ever seen. Just a simple pinch of salt thrown into a salad. And he has never done that before. And he mimicked what I did. And it seemed so natural. And after the month he has had and we have had to see him throw his first pinch of salt into a salad was something. I don't know what. It was something.

Eliot is coming back to us. He is back. Eliot.

The Ant Farm

While playing in the play room at the hospital Eliot and I were checking out the fish aquarium. I was thinking how cool it would be to have fish to watch during chemo treatments and then thought we could get a beta and then realized one fish swimming around is not only not that terribly interesting but also not practical to bring to the clinic. Then I started wondering what would be fun to watch and thought of an ant farm.

I called my sister Laurie and the super geek and super organized delegater that she is she produced an ant farm (the very one you see pictured above) - thank you Dale! We waited for a few weeks for the ants to show up. They arrived on Wednesday (in the mail in a little envelope) and even came to the clinic with us this week). Eliot and the rest of us too - sometimes I think I enjoy them more than Eliot) really enjoys watching them.

Did you know all the ants in a colony are females. They produce males solely for mating and the males die shortly after mating. Hmmmm....

New Blogging Plan

So I've realized an awful lot of my posts lately have been about me and not actually about the subject manner of the blog - Eliot and Naomi.

I have another blog http://saramcginley.blogspot.com that I've had for a while.

I'm going to start moving my posts that are basically about me over there and leave EliotandNaomi for stories about Eliot and Naomi. I have no real rules for how this will work so who knows they might end up over there sometimes and I'll inevitably end up over here. How could I, after all, write a blog about my kids without me showing up from time to time. I am a new-aged over protective ever present mama after all.

A Chocolate Milestone

So I've missed a lot of Naomi's milestones this year. I haven't actually missed them. I've basically done a horrible job of documenting them. Not this one tho. Here is Naomi's first chocolate experience, fully documented. We have many, many more pictures of this daze inducing extravaganza.

The Birthday Girl Goes On A Walk

My mom watched Naomi while Aron, Eliot and I were at his spinal tab and bone marrow biopsy yesterday. They went for a walk and had a pretty great time from the sounds of things. And for the millionth time, I'm blown away by how beautiful she is. Moment of silence.

They Played. I Cried.

My kids played together today. They actually played! They sat in the living room today very near each other on the floor and played. The way a 2 1/2 year old (exactly) and a year old (almost exactly). Eliot played with some trucks and Naomi played with - well - she played with everything else.

Later they sat at the dining room table and Eliot told her about the trains on the Thomas the Train web site. He even goofed around with her and leaned in and put his forehead on her forehead and smiled.

I cried. I cried. I didn't cry. I balled my eyes out in the kitchen when I saw it. Tears fell.

Such a simple everyday thing that hasn't happened in over a month around here.

Praise God and the gods of no more steroids.

Update

As I thought about this blog post yesterday I thought it would be a curse loaded rant about the inexplicable inability of our medical system to talk to itself (we were told to get to our appointment yesterday at the following times by that many people 8am, 7:45am, 10am, 10:45am and 11am and our actual appointment never really actually ended up starting until noon) and why they insisted on making a 2 year old on steroids wait that long in a day to eat. I'm over it now.

Eliot made it through yesterday's procedure (a spinal tap and bone marrow biopsy during which they sedated him) with flying colors - save the understandable, intense and unending begging for food.

We'll know the results of that stuff within the week - by next Thursday at the latest. The result will tell us if Eliot is in fill-in-proper-medical-term-here remission (also known as super duper fabulous extra special specific remission). It will also tell us the course of the next 5 months of his treatment.

This week we get to just give him his medicine that prevents pneumonia (why does that word start with a p?) and the other one (the overdose under dose one) that prevents fungal something or other. This means we get to give Eliot medicine only in the mornings and then its 1 mL of medicine on every day of the week except Monday and Tuesday when we add a medicine in the morning and one in the evening. Woo hoo baby! Easy sailing.

Happy Birthday Naomi

Naomi I'm blown away by the super Episcopalian, super jet setter, super boring first year you've had.

You travelled a lot.

We went to Columbus, Ohio in June for The General Convention of the Episcopal Church where we saw history being made (well you slept through it and I photographed it and spazzed out about it) and made a little of our own.

We went to our new Presiding Bishop's Installation (and received communion from her) and her Seating and later that month had the honor of meeting her in person (covered in vomit).

You learned so many things. Like how to pick your nose. How to say bye bye and hi. You started laughing and now laugh all the time. You've got a host of inside jokes girl and I hope they keep cracking your ass up.

You slept every once in a while. I think you started sleeping through the night (in our closet of all places) around the time you were 3 months (and don't believe the hype, Noami, mom's who don't write down every milestone and/or remember it are still decent-to-average moms from time to time). You slept through the night for a little while. We even moved your bed into the room with Eliot and you shared a room for a few nights. Eliot sure was excited those mornings to see baby Naomi there.

I spent most of your life so far worried that if you cried in the night you'd wake your dad. Silly. Silly. Stupid. Ill informed me.

I've spent most of your life barely holding back the drool I've been so tired. I hope someday to introduce you to the formerly energetic and generally happy and content me there once was. She showered on a regular basis, brushed her teeth and was able to focus on things and remember words. Well. At least I think she did. I don't remember. Wait. What was I talking about?

When you were exactly 11 months old we found out that Eliot is carrying the leukemia we all now have in a way. At the ripe age of 11 months you become a survivor. I pray. I pray. I pray that you'll make it through this a kid who felt loved and parented and as equally disciplined as your brother. Sometimes I'm afraid you're going to grow up and feel you had 2 super needy older siblings. Sometimes I'm sure you're going to grow up one of those wise, compassionate people who is so confident they intimidate people and so sure that its not all about her that you never get hung up on bull shit ego crap.

The good news is no one knows any of that right now and all we can do is keep moving one minute at a time. And man, girl, you're really great at that.

So far we think we know a few things about you. You're very hands on. You enjoy playing in the toilet and the diaper pail. You grab hair and faces and glasses. You're just about the spunkiest kid your Dad and I have ever seen. Wait. You are the spunkiest kid we've ever seen.

When you and I were in the hospital together when you were born even the nurses there in the ward mentioned that you scream louder than the average 1 day old. One said to me, 'watch out mom.'

You're a spit fire. You're a bad ass. You're super sweet.

You have David Letterman-eque teeth up front and center.

Your flat butt (I'm sorry, I'm sorry you got that one from me) can't hold diapers up.

You're starting to walk.

You're drinking cows milk and mama's milk.

You love all orange food.

You love your brother.

You love to goof around on the couch.

I love you.

Crash

I gave Eliot his last steroid (for now at least) about an hour ago. It went down as all of the others have - laced with chocolate syrup - a 'prize' for talking all of his medicine. It was basically uneventful really.

I'm glad. Somewhere inside what feels like a husk of me. I'm really glad. We made it. We made it. We made it. We made it.

I crashed and burned about 3 today. Just got suddenly unable to do it anymore.

Thank you mom for being here and being someone fun for the kids to be with and for feeding them and for playing with Naomi as we speak! I'm remembering to say that now and I don't know if I'll remember to say it later - and I know you keep telling me I don't have to say thank you - I am anyway. Thank you.

I'm fried. I'm totally fucking fried. Remember those 80's anti-drug campaign commercials.

This is your brain. This is your brain on drugs.

This is me (imagine picture of me - poorly managed eye brows, happy face, boring hair do, mediocre posture).

This is me on the last day of induction (imagine picture of me - poorly managed eye brows, looooooong face, boring hair do, watery eyes, blood shot eyes, no energy, horrible posture).

I put Eliot to bed tonight and had this irrational fear. Oh God. Don't let this be the last night I ever get the honor of putting this child to bed. Give me another day for this. Let me keep him for a while longer.

I know I get to keep him for a while longer. I'm just out of my mind. I'm going to lie down and rest now.

Overheard at the Breakfast Table Today

Eliot: Well Naomi, we've managed to make sure one of us is awake for every single nap this month.

Naomi: Yeah, dude, we rock!

Eliot: I'm so glad we remembered to plan. It would have been so annoying if we let mom have at least one nap this month. We managed to only nap on the days when Daddy was home. That way he thinks mom gets to sit on her butt and eat bon bons everyday. Tee hee.

Naomi: Yeah we kick ass.

Eliot: So how about today since its the very last day of this hard part lets both of us stay awake the whole time.

Naomi: Sweet. I'll lay in bed and make that sucking noise that makes mom think I'm suffocating. Maybe we can pull her paranoid 'the house is on fire' strings.

Eliot: Brilliant.

Naomi: Yeah and I've got it. You fill your pants up with the biggest poop of the century after being quiet for nearly 20 minutes. Then lay in our bed and say 'Eliot go down staaaaairs' over and over and over and over and over and over in the most absolutely annoying way possible.

Eliot: I think I hear mom coming. Keep rubbing your pears in your hair. She'll never know we talked.

Naomi: Gah gah g a h boo boo dEE dee

1 Year Ago Today

I remember crying (tears and everything) at lunch a year ago today. I knew I was going to the hospital in the morning for a scheduled c-section. I knew it was the last lunch I'd have with Eliot when he was my only child breathing air. I was hormonal. I was exhausted. I'd gotten up to pee at least once - usually 3 times - a night for weeks. Silly me. When I think back now I think I had no idea what the hell exhausted was.

I was worried that the new baby - whoever and whatever it might be (Aron and I had just decided to name a baby boy Max McGinley Kramer that morning) - wouldn't get as much love as Eliot. That I didn't have it in me to love another kid. I was filled with trepidations and worries and fears and guilt - and hormones and insanity.

I cried - from what I remember - most of the day. Especially at lunch.

I also learned that day that my sister, Nancy, was pregnant. It was still that very early stage when you don't know if the pregnancy will make it, when you don't know if its a boy or a girl or how gigantic your boobs might get or how sick you'll be or when the baby will be born and what its name will be.

Today Nancy, my mom, Eliot, Isadora (my sister Nancy's oldest daughter), Naomi and Arlo (the little guy we learned about a year ago today) all had lunch today. No tears. Well. None from me (until later when Nancy told me her most embarassing moment in life and it was so funny I fell on the floor - literally - laughing). Today is all about celebration. We made it through - are about to make it through - the hardest part of Acute Lymphomic (or is it Lymphatic) Leukemia. Today is the last day. Another last day. Today.

Its weird. I was much more afraid of my second kid than I am today of this shitty disease. This shitty disease we're lucky to have instead of all of the other more-shitty options.

An Open Letter to Guilt

Dear Guilt,

I know I've tried to say this before and have failed to be completely direct. Quite frankly, I've lead you on for years. Its time for me to come clean and just let you know. I'm dumping you. We're over. I'm done.

You've gotten in the way of my ability to negotiate with employers in the past. I decided we could still make it work. You've caused me to work too much sometimes and not take care of myself. I was still willing to hang in their with you (why I honesty don't know). You've been periodically getting in the way of my ability to parent. That crosses the line.

I know. I know. I've sort of said I was going to stop seeing you. I've said I wanted some time apart. I've even not called or answered your calls for a few days or sometimes just a few hours at a time.

I never made it clear.

Well hear it now loud and clear.

We're over. If you call (which I bet you will - you're soooo needy and persistent) I plan to hang up. If you try calling my friends to get to me I don't care.

I know you've been cheating on me for years. I hear all of the other women (what is it with you and mothers - you slut!) talk about you.

I know you helped me in the past. You got me to admit things when I was a kid and you kept me from getting trashed as a high schooler (and then you went crazy and kept me sober throughout college - goodness - you're so uptight!).

You're not helpful anymore.

I know. I know. Last night at 4 am when I was feeding my child french fries and a hamburger you tried to help me. You know what. You blow everything out of proportion. You got me all agitated. What the kid needs now is a healthy diet of serenity not some agitated freak show of a mother.

I put your stuff out in the street in front of my house. I know that was kind of immature of me and I don't care. I don't feel one bit guilty about it.

Sara

+++

In the spirit of full disclosure this post was inspired by the daily parenting newsletter I subscribe to.

Congratulations Cars

Cars the movie won the first ever Golden Globe Award for animated film. Go Cars!

Mama No Talk Eliot

They said steroids would turn our little angle into a teenager. Holy cow. I've heard the sentence 'Mama no talk Eliot' at least four times in the past twenty four hours. He wants to sit alone or with Naomi at the table and doesn't want me to sit there and talk to him. Its hard not to feel hurt. Okay. I admit it. I do feel a little hurt. A little surprised. A little bummed. A little elated. Every time he tells me to leave him alone I can either get something done or even better - blog. These windows to the future, when my kid will want space from me. When he'll outright need it are - well they're something. I don't know what they are. Interesting. Hard. Fun. Eye opening. None of those words are right. They're here. I'm seeing into the world of the parent of a teenager. Sort of. I'm noticing how my ego is a little more involved in being 'needed' than I realized. Yuck.

Hanging with Naomi Ruth

Photo credit: Aron M. Kramer (AKA Daddy)

Photo credit: Aron - the same guy from the post just above this one.

That is not. I repeat. Not. A gigantic green booger.

Taken by Aron

Lets just say the girth of my arm there is all about the massive muscles I've been propagating while carrying both of my children up and down the steps six or seven times a day.

photo credit: Nana (AKA Pam McGinley)

I Yelled at Him

I called him a shit head, lazy, pain in the ass. I said he was unbelievable and now was not the time to snuggle. I told him to stop touching me, I kicked him (only a little bit to get him to take his 75 pound leg off of me) and huffed out of the room pissed, grumbling under my breath. And when I say grumbling I don't mean saying things like 'grumble grumble grumble.' It was more in the what the fuck you piece of fucking shit pain in the ass never wake up in the middle of the night I always have to wake up neighborhood.

I have been awake for at least 2 hours every night since coming home from the hospital. That is every night for over 2 weeks. I have prepared 3 and 5 and 7 course meals at least once a night - many times twice - for a tyrant of a customer. He has been awake 2 of those nights. Once because of the fucking mouse. Once because I yelled downstairs and asked him to come upstairs because I thought I might go insane.

I love this man. He is a good dad and a good lover. We're getting along really well lately - who knew cancer could do that. He got up and fed the kids so I could sleep in yesterday (after I of course work up and said his name over and over about 12 times to wake him up). He does lots of great things and lots of fucking annoying things too.

For example, he sleeps through everything and its really pissing me off. Okay when I say he sleeps through everything I don't actually mean everything. He sleeps through the children waking up. He doesn't sleep through the club next door making noise. When he hears that he starts tossing and turning so much that I wake up too.

He did sleep through my yelling. Didn't register a word of it. Or the stomping up the steps. None of it. Nor did it register when I did it the night before. It so didn't register that he asked if I'd been up at all that night (yes that night during which I might have slept for 3 and a half hours). Right now he still doesn't know about it. He is innocently presiding over the Eucharist at the 8am service. I probably should have let him read this before I hit publish.

Just in case you're wondering. It is not rewarding in the slightest even tiny tiniest little bit to yell at a sleeping man. There is no reward. Nothing. Zero. Which in itself is. Well. Annoying.

Oh the joys. The joys. The joys of marital bliss.

I'm a Rodent

I spent a lot of time the new days after Eliot was admitted to the hospital searching the internet for talk of a correlation between mice in homes and disease in homes. Not the disease mice bring - some other disease. A disease that was there before the mice. I swear I read about that once.

I couldn't find a thing. I still haven't.

Instead I'm working on a new theory. Perhaps mice create other rodents by their very presence. I'm becoming a rodent. Its 1:10 in the morning. I've been up for at least an hour - its probably been more like two hours. First Naomi woke me up crying. Then Eliot. Now Naomi is upstairs making her breathe-in-so-hard-you-think-she-might-be-choking noise. The club that we were so brilliant to buy a house next to is also sending its base music through the ground somehow.

The thing that is so rodent-y is that I'm starting to get so used to being up for hours at a time multiple times a night that its not bothering me as much. I'm becoming a rodent by night and a whatever you are when you're awake at day during the day.

I have some itchiness in my tailbone area. I think its my tail growing.

McDonald's

Eliot just whined for 30 minutes (at least 30 minutes that is) saying he wants to ride in the car and togo to McDonald's. If we get in the car and go to McDonald's they won't have what he wants (french fries) and I can't stand the idea of feeding him McDonald's anyway. Its also 3 degrees outside and his warmest clothes got full of pee yesterday. I don't think I can get both kids in their winter gear out to the car since he won't walk very far. So blah blah blah blah the answer to going to McDonald's is no.

He has never whined this long about anything. I've been lucky enough never to deal with this kind of thing. I just tried everything - whining back, saying no, saying no loudly, saying we could go later, distracting, distracting, distracting, ignoring, mirroring. Finally I said, 'Eliot, I'm choosing to ignore you right now. I just don't know what else to do.' I picked up the phone to call a friend and get advice and he laid down on the floor right where he was with his blanket.

I feel weirdly horrible. Horrible. Like I should pack the kids into the car (after carrying both of them out there in the bitter cold) and take them to McDonald's. Goodness. I sooooooooo see how parents of sick kids end up spoiling the hell out of them. This is one thing I could do for him. One tangible thing I could do that I know would bring a smile to his face. Fuck.

Hanging Out On the Couch

Naomi, Aron and I got to hang out for a long time together last night. We just played. Well. Naomi crawled around like a crazed monkey and we laughed at and took pictures of her (and saved our glasses from certain destruction and kept our hair out of her hands). She is a wiiiild and crrrrrrrrrazy gal.

Milk

Naomi had her first glass of cow's milk today. When I put it on her tray I said 'this is the beginning of the end and the beginning of the beginning.' I'm going to start giving her cow's milk at each meal and if she asks to be nursed I'll nurse her. So its the beginning of the official weaning (vs. the unofficial weaning when I just wasn't able to be around a lot while Eliot was in the hospital) of Naomi.

Who knows how long it will take. I'm not going to push things at all. Afterall her life has been full of a lot of changes lately. I see no need to enforce another huge one.

Here's to Naomi's new calorie source. Moo.

Its Starting

I'm not sure its obvious in this picture. Eliot's really getting 'steroid face'. I regret (I'm not going to gloss over it - I know I shouldn't regret it and I do and I also shouldn't 'shouldn't' myself - there there it is - I regret this) not taking a picture of him each day this week. I could almost see the puffiness get more and more each day. Not a lot more. Still more.

He also put his sweet head on my knee yesterday and I massaged his head for a while. I noticed several of his beautiful, fine, blonde hairs on his shirt and then in my hand and when he sat up on my leg.

I can't really tell his hair is leaving. I'm sure as time goes on here it will become more and more obvious to me and others.

I was feeling really sad about his hair going about ten days ago. I feel less sad about his hair now. Now I still mostly feel sad about his eye lashes. Look at those eye lashes.

Is it vanity. Is it fear of change. Is it silly. Is it totally understandable. Yes.

Underdose Overdose

I spent nearly 40 minutes on the phone today with the pharmacist and doctor after Aron was at Eliot's clinic appointment this morning because I didn't trust the doctor's response to the fact that I realized I'd mixed one of Eliot's drugs incorrectly (yes they trust us to mix drugs).

After talking with the pharmacist for quite a while it turned out that we'd be under dosing Eliot by quite a bit and it was a miracle that he hadn't come down with an infection. As we talked more (much, much more) about details (while the pharmacist checked in with some mystery person standing next to him) it turned out we were overdosing Eliot. It went from great alarm that I'd put my son's health at great risk to great alarm that I'd overdosed my child on this drug and thus put his health at great risk.

After 30 minutes with the pharmacist the final advice was to go forward with the medicine - with my new understanding of dosage (which do not fear we were giving all the other drugs correctly and it was Aron who convinced me to do the dosage I was doing and it was I who was convinced because its fucking confusing). The pharmacist also wanted me to call at tell the doctor.

I felt like such a moron on the phone with the doctor (and like such a child abuser on the phone with the pharmacist). I swear the doctor was sitting in the room holding the phone out in front of his face, crossing his eyes and mouthing 'total moron' at the phone or maybe sitting in the room with a bunch of his big-brain doctor friends with me on the speaker phone and all of them trying so hard not to laugh that they blew uncomfortable air into their Eustachian tubes.

Thank you thank you thank you God for my new found lack of shame whatsoever and my willingness to call and make a fool of myself just because my gut tells me something is wrong. Thank you for the future day when the medical field realizes that this stuff is all mumbo-jumbo to the rest of us and we shouldn't really be trusted with this insane concoction.

How to Describe a Poo

I remember, with the clarity of someone with a photographic memory, a moment in the most horrifying class of my entire education - sex ed - during which the teacher told us an important reason to learn the words 'penis' and 'vagina' was so we could talk to the doctor in the future in a way that was clear and concise. I saw their point. I mean, are you going to go to the doctor and say you have an issue with your va-jay-jay?

Ever since then I've done my very best to use the proper words for body parts and bodily functions when talking with doctors.

I called the doctor's office yesterday because of mysterious poop activity. I got about 4 seconds into the phone call when I realized I couldn't think of the 'official' word for poop.

I was strangely stumped and started adding words to my sentence while my brain flipped through files trying to come up with something better than 'crap' or 'shit'. For some reason at the time using the word 'poop' seemed utterly inappropriate.

I ended up referring to Eliot's dookie as a 'bowel movement'. Not bad. I think 'feces' might have been a wiser choice. It took me over 18 hours to come up with that word. 18 hours to realize that shit can also be called feces.

Oh the power of my fine education. My broad and expansive vocabulary is utterly astounding.

Some Keep Your Shit Together Inspiration

I've been inspired every weekday for several months by a newsletter I subscribe to. This one and several since December 18th have been unbelievably helpful to me.

Check this guy out - he specializes in working with parents and I think his 'meditations' are helpful for life in general - not just parenting.

THE DAILY GROOVE ~ by Scott Noelle
www.enjoyparenting.com/dailygroove

:: Unreasonable Love ::

To love *unconditionally* means you don't need a
"reason" to justify loving. In other words...

1. When you have a good reason to love, then you love.
2. When you have a good reason *not* to love, you love anyway.
3. You love for no reason at all.

In our conditional-loving culture, "reasonable" loving
is the norm. So today let's practice the second and
third types of loving...

Whenever your child behaves in a way that would
conventionally be seen as an excuse to love *less*,
be a rebel and love *more*! That doesn't mean praising
behavior you dislike, it means responding with your
heart wide open.

Also, draw a heart on the back of your hand (or create
any easily noticeable cue), and whenever you notice
it, say "I love you" or offer your child a hug, a
loving gaze, or any loving gesture.

How does it feel to love "just because"? Are you
willing to love *yourself* "unreasonably" too? :-)

http://dailygroove.net/unreasonable-love

Feel free to forward this entire message to your friends!

Copyright (c) 2006 by Scott Noelle
--
"Inspiration & Coaching for Progressive Parents"
http://www.ScottNoelle.com
http://www.EnjoyParenting.com

More Good Eats

A big deal with the medicine Eliot is taking is that it can, shall I say, plug you up a bit. I don't enjoy giving him medicine and would like to avoid drugging him up as much as possible. So I've really been trying to keep him regular the 'natural' way. This is a challenge considering he sits around for massive chunks of the day and seems mostly interested in eating cheddar cheese and McDonald's fries (I'm not kidding about that).

As it turns out he has been more regular this past week than ever before (which has also been true for Naomi and me).

I give the credit to the amazing food that has been prepared and magically delivered to us on a regular basis.

Here is another great recipe.

Soup

The soup -- I just kind of throw things in...something like this:

Put about 1/4 cup olive oil in a big ol' pot. Then, add all your spices. I used a dash of turmeric, a spooful of cumin, a bit of basil, a dash of dill, pepper and salt, and always, cayenne pepper.

Then, cut a bunch of onions and add to oil/spice mixture. Cook until spice mixture spread evenly over onions (2-3 minutes). Then cut up carrots, potatoes, celery and add to onion mixture. Cook until all are coated in spices.

Now, add vegetable stock and coat over veggies. I have a pressure cooker, at this point, I add water and canned tomatoes and a wad of garlic. (I only buy 1 brand of canned tomatoes--they are expensive but taste WAY better. They're at Seward in a orangey can , Tuscan organic tomatoes).

If you don't have pressure cooker, just add water, tomatoes, and garlic and cook until carrots, potatoes are soft. Then, after veggies are basically done, add black beans.

I think that's what i made for you.

That sounds like what we had and its goooooo-o-ooood.

A Shout out to Great Swear Words and The People Who Create Them

I commend to all of you a new word. I haven't tried it out yet and think it has a lot of potential.

I was sent this email several days ago and don't know why I didn't read it until now.

Sara, my 82 year old mother coined the phrase "fuckershit" one night while we were having cocktails in a seedy bar. She uses it frequently and with passion. Feel free to try it out, I use it frequently, George uses it frequently and I hope you will. It's a good word that covers a lot of emotion.

Strike A Pose

Why am I always at a lack of words when it comes to Naomi?

Its not like there aren't stories. Like when she greeted me every night when I came home from the hospital with a huge smile, racing toward me as fast as she could on all fours. Or like yesterday when I realized she had a big ol' green booger on the tip of her finger which I assumed she fished out all by her very own self. Or how hilarious she is to just hang out with on any soft surface (couch, bed, pile of blankets) because she just launchers helself in every direction in her own super spontantious and trusting and (scary) fearless manner.

I'm blown away. Maybe its her age. All of the amazing things happening in her life. She is so close to standing up and walking and refuses all help. She has made it clear that she'll come to it on her own time without undo help from anyone. She is starting to talk. She says hi and it sounds like (forgive me) she is deaf when she says it. She says bye bye (bah bah bah bah bahhh). I'm pretty darn sure she said mama today and meant me when she said it.

Maybe its because she is a little girl. Goodness. How does a little girl grow up in today's world. How do I be part of that? Its a huge mystery to me. Goodness. What am I going to do when it comes time for make up. Thank you God that I have a lot of gay friends!

There is part of the best parenting book I've ever been always starting and finishing at the same time. The Parent's Tao Te Ching by William Martin

'Meditation' number 25 is called 'Clouds of Light'. I reming myself of what it says as often as I can.

25.
Clouds of Light

The look so small and frail
but they are so great and magnificent.
They are born of the same womb
that birthed the cosmos
and knitted together the galaxies.

If you could see them as they truly are,
you would be astounded.
You would see not little children,
but dancing clouds of light,
energy in motion,
swimming in an ocean of love.

They are so much more
than what you see.
As are you.

I think its because of this that I don't know what to say. I see so much and I know there is so much, much more.

If A Mom Snaps in an Empty Room Does She Still Make a Sound?

I snapped this morning. I wasn't actually in an empty room. I was in a room with Eliot and my mom. Eliot was telling me he wanted to put his shoes on. He was telling me that over and over and over and over and over and over and over and over and over again with a whine. Puuuuut shoooooeeez ooooooooooooooon.

I snapped.

Not in a horrible way. I didn't say, Yes Eliot I will put your shoes on you I'm over here getting ready to do that and I will put them on you just like I do everything you ask me to do. I didn't scream at him or even yell. I raised my voice. I didn't say anything like, 'give me a fucking break child I'm getting to it.'

I said in a raised voice, not a yell, not a scream, 'Eliot I hear you. I am getting your shoes. I will put your shoes on you.' Well I guess that isn't an exact quote. I don't remember exactly what I said. All I know is that I said it in an impatient and I'mveryannoyed tone of voice.

They warned us that the steriods would turn our precious child into a teenager. Holy cow. Now I see why the legal driving age is 16. Parents want their children to go out and stay out for a while. Come on parents of teenagers out there - isn't part of you releived when they come home a little late?

+++++++++++++++++++

Okay. I bet I'm going to pay for that comment in about 14 years. Eliot is going to use that one against me someday when he comes home late. So here is a message to you Eliot from the past.

Staying out after your curfew might give me a little joy if I'm feeling annoyed at you at the time. It will also scare the crap out of me. I will assume something bad has happened to you. By the time you're 16 I will have had a lifetimes worth of fearing for your life. I will not find it funny.

If you're late call me. If you're doing something illegal do it because you want to be doing it not because you're following other people's lead. And for goodness sakes think about why its illegal. There might be a good reason for it. Drive sober. Always. Ride in cars with sober drivers always. Wear a condom or for goodness sakes keep your body parts in your pants. Be gentle with yourself and whoever you're kissing and doing other things with.

And for the record just because you're annoying me (and right now you are annoying - instead of napping you're laying in your bed saying 'maaaaaaah maahhhhhhh' every 6 seconds) and just because I'm saying you're annoying doesn't mean anything more than that. Thats all it means. You're doing something and I'm getting annoyed. Be your annoying ass self. Let your freak flag fly. Cry. Laugh. Go ahead and fart in public from time to time. Wear socks that don't match. Say the wrong thing. You know this now. I hope you still know it when you're 16. None of that stupid crap manners. Be good to yourself. Be good to your soul. Be patient with you. Be kind. Give yourself room. Moderation is a good thing - in moderation. And most of all - remember that unsolicited free advice (kind of like this long speach) is probably more for the person giving it in the long run - wise and sage and truly amazing as I, I mean it may be.

More FAQ

Some kids from church wanted to know about this and I think its a really cool question.

How are Eliot's chemo therapy treatments given?
Right now he gets chemo therapy two ways. When they do his spinal taps they also inject chemo therapy into his spinal fluid. I've never been there when they actually do that. I think its with a shot or something. They do let us be there with Eliot when he goes to sleep for this procedure and they call us in the moment he wakes up so as far as he know's we're there for the whole thing.

He also gets his chemo therapy through a port they put in his chest. Its under his skin and has a tube that connects to a vein in his chest. Before we go to his clinic visits we put some stuff on his skin above the port to numb in and when we get to the clinic they put a needle into the port and then inject the chemo into an IV that is connected to his chest. I sure hope that made sense. This web site explains it well. It even has a picture.

Eliot will also receive chemo therapy by mouth at some point in his treatment. I don't know if it will be a liquid or a pill. I'll try to remember to let you know when I find out.

A Year Ago

This is Eliot one year to the day before he was diagnosed with leukemia. I can't help but to wonder if he was already sick when these pictures were taken. Aron and I have a theory that he was. Around his first birthday he seemed to stop thriving the way he had when he was really young. He went from the 90th percentile in height and weight to the 20th. He stopped hitting milestones early and started hitting them late. He got super duper clingy. At the time I blamed myself for being too stressed out and thwarting him. I was after all pregnant, nursing and moving for the second time.

Self blame is a waste of time. I hope I can model a lack of that for Eliot and Naomi so they don't do that to themselves. Except of course when they do screw up. Then I hope they take responsibility, make things right and move on.

I made a joke in the hospital about causing Eliot's cancer by yelling at him that one time when he was 9 months old. The doctors got on me right away and told me there is no known cause of this and I can't blame myself. I don't blame myself. I do wonder, a lot, what caused it. I think its super ironic because there are a lot of things I have tried not to do because I thought they could harm Eliot and Naomi. I avoid aspartame even tho its in every diet drink and low fat everything in the world. I try to avoid harsh cleaners even tho they're all over the place. I sort of try to avoid non-stick pans.

Someday I hope they do figure out what causes this so other kids don't live through this incredibly hard, emotionally taxing, physically insane thing. I also hope whatever causes this isn't environmental. Part of me worries about Naomi and hopes she is 'safe'. The doctors say the only reason to be concerned about her is if blood cancer runs in the family - which it doesn't. So mostly I don't wonder. And sometimes I do. Will she make it through without leukemia. Either way she sure is experiencing it.

I Don't Remember

Today marks 3 weeks since Eliot's first night in the hospital. I was thinking today that I don't remember how I spent my days with the kids. It hasn't been that long and yet I can't remember. I mainly can't remember how Eliot spent his days. What did he do while I did the dishes? What did I do when I wasn't hanging out with the kids. Its weird.

How You Can Help

I've had a lot of people ask me how they can help. I have especially been asked this by people who live far away. Here are some things that would be helpful in no particular order.

• send us notes, emails or leave us encouraging voice mails
• send Target or Cub or co-op gift certificates
• send us money for our medical expenses, babysitting, vacation, college fund
• give money to the Leukemia and Lymphoma Society
• give blood
• get on the bone marrow registry
• pray or meditate or chant or send energy or think about or dance or all of those things for us
• send money or toys for the bravery bucket at the hospital - I still don't know exactly how to do this - you can send stuff to me and I'll get it there
  
• send money to St. Jude Children's Hospital
• give money to Caring Bridge
  

More Yumminess

This recipe is for my friend Mo's enchiladas. There were a few days there when these were my thing to look forward to. I'd think, okay 2 more hours until Eliot's nap. Then I get to go get enchiladas. Then I'd be tortured for those two hours and inevitably Eliot wouldn't go to bed on time. Finally when I got to the enchiladas it was such a treat.

Enchiladas:

Dice 1 onion and half a head of garlic. Saute in 1 tsp cumin and 1/4 cup balsamic vinegar. Cook until onions are done or until balsamic vinegar is done.

Boil 1-2 cups of water and then add 1 cup bulgar wheat. (You can turn down or off the boiling water). When Bulgar is soft, dump any extra water. Add 2 cans black beans and onion mixture in bulgar. Mix.

Buy 1 large can of red enchilada sauce.

Buy 1 dozen corn tortillas.

Buy a bunch of shredded cheese.

Now, layer everything. Start with a coating of enchilada sauce on the pan so your tortillas won't stick. Then, rip tortillas into halves or quarters and cover bottom of pan. Put 1/2 of bulgar/bean/onion mixture. Put 1/2 of sauce and cover with cheese. Then, tortillas, bulgar, sauce, and cheese once more. Sometimes on the top, I cut up a bell pepper so it looks pretty. Mo put the red pepper on the enchiladas we have and Naomi LOVES them.

You can also add olives, but I never do because Daron hates them. So EASY!