Here Comes Another Milestone

Tomorrow marks the last day of Eliot's 2nd phase (out of 5) of treatment. This one was called Standard Consolidation and it included 3 spinal taps and oral chemo and some chemo put in his port. It, like the first phase (which was called induction) was 28 days long.

The next phase - the 3rd of 5 - is called Standard Interim Maintenance. They say it will give us a taste of what the last 3 years of his treatment will be like. They say its kind of an easy stretch of treatment. It is 56 days long and barring disaster starts on Thursday.

Eliot will get 2 shots of chemo in his port during this phase. He'll get chemo through a spinal tap once. He'll get 2 kinds of chemo orally and he'll take steroids again orally. Thank goodness the steroids will only last for short 5 day stretches. From what I can tell we might only have to go to the doctor's office once in March and once in April - or maybe just twice both months. That will be a welcome change.

The other amazing thing is this. Unless something really unexpected happens in the next 2 days March 1st 2007 will mark the beginning of the last 3 years of Eliot's treatment. They determine the end of treatment date based on when you start Standard Interim Maintenance. So March 1st is the big day. March 1st 2010. March 1st, 2010 is a Monday so I'm guessing his final treatment will either be Thursday, February 25 2010 or Thursday March 4, 2010.

This is a very cool thing. March 4 is my favorite day of the year. It is a sentence all on its own. March forth. How cool would that be if Eliot's final treatment happened on March 4th.

Yes. Yes indeed. I am a dweeb.

Church

Eliot has been talking about church a lot lately. When he hears music on the radio that sounds like church he gets excited and talks about it. He has been playing with Aron's travelling church box (I'm sure there is a technical term for this thingy). It has a mini wine cup and bread plate and little water and wine thingies and a place to carry the bread. He loves it. We set it up on a little fake altar the other day and 'did church'.

We listened to Speaking of Faith on the radio the other day and there was a lot of church music. He loved it. We went onto Trinity Wall Street's web site and watched some Sunday morning church. He loved that. He was asking me about people who were reading the readings and telling me he could see daddy. He started calling every person in anything that resembled a robe a priest. Even every member of the choir.

Then he called Naomi a a priest and himself a priest and me a priest. It was so cool to say, 'yeah, Eliot, we're all priests.' I like our theology.

Baby Booey

I don't know how long I've been calling Naomi 'Baby Booey.' I just noticed myself say it today. It rolled off my tongue as if I say it everyday. I wonder if I do.

Naomi is blowing me away lately. She has started using her own signs. I swear if I'd actually started teaching them to her at the recommended 6 months she'd be signing up a storm. Instead she has had to make up her own and scream her head off for the past 7 months. I'm not calling myself a bad mom. I'm saying it like it is. I've sucked it up in the sign language department which is particularly annoying since I know it works. Anyway, enough about me.

She climbs confidently on anything. Anything. She is walking and walking and walking. She watched me playing 'catch' tonight with Eliot and started 'playing' too. She has figured out the 'trading' rule (if you want someone else's toy trade them for another one). She even traded a toy with me tonight.

She is a growing force to be reckoned with. She is sweet. She is smart. She is cute. She is charming. She slept through the night last night. She is a mystery to me in every way possible. Words don't even say what she is.

Life

Life with leukemia is nothing like I expected it to be. Friday Aron, Naomi and I went to a funeral and Eliot stayed with Isadora and Arlo and Auntie Nancy and Uncle Rob. Nancy caught this and several other amazing pictures. This is life. We're balancing a bunch of things that might seem too big and yet they aren't. We're having fun. We're taking walks and splashing in the puddles in boots that are too big. We're taking our little pink baby stroller on walks through the mud and snow and saying its leaving train tracks.

Eliot plays and talks constantly. He rarely stops for movie breaks anymore. He chases Naomi and invites her to play and screams at her and pushes her. He wants to play with anything she has and gets furious when she does the same. He eats huge quantities of food sometimes and others he eats nothing. He loves, loves, loves routine and even reminded me when I almost didn't brush his teeth the other night. He is two. He is living. He is living large.

The Donald Might Start Looking More Like The Eliot

Thanks to the WWE (formerly the WWF) The Donald might be shaving his lovely locks.

Eliot MIGHT Have Taken This One

So I'm seriously behind on posting pictures. I have pictures that are a month old that are yet to be posted. This one was taken on February 5th. Yes. Almost 2 weeks ago. I just found it in with a bunch of shots Eliot took. Goofy shots of Cheerio's. Mostly blurry shots. And there was this. I love it. This is what Eliot sees when he eats all of his meals. This is the Eliot's eye view.

You Know Whats Funny?

Do you know what is sooooo funny that you have to shriek so loud your mom's ears actually start to ring a little. Its so funny you have to bounce up and down every time you see it. And laugh. And laugh. And laugh. Even after the 25th time you see it in less than 5 minutes. This is a funny thing. Its worth belly laughing every 3rd time or so. A major pull-a-stomach-muscle laugh kind of funny.

Watching your brother who is in the bathtub pick up a wash cloth and drop it in the water is that funny. That's whats that funny.

The Eliot

Here is The Eliot sporting his "The Donald" inspired hair do. He has his own flair to the whole coif. It includes - although its probably not terribly obvious here - some seriously long, seriously thing hair that sticks out from the back of his head. Its sort of mullet-meets-mo-hawk. It gets full of static electricity a lot and sticks up in random places. Its chemo chique. Its what all the caner patients are wearing these days.

Well. Not all of them. I suppose just this one who doesn't seem to mind sporting the weirdest hair in all the world and does hate, hate, hate hair cuts.

The 18th

The morning of July 18th, 2004 I woke up when I wanted to. Later that day I took a nap when I was tired and felt like napping. That was the last time I did both of those things. I haven't done that since. That was 2 years and one month ago today. I went into labor later that day (during my nap - notice I didn't say I finished that nap) and Eliot was born the next morning.

The morning of January 18th, 2006 I woke up the mother of 1 child for the last time. Around 9:30 that morning Naomi was born.

The morning of December 18th, 2006 I woke up thinking both of my kids were basically healthy for the last time. About 4pm that day we learned that Eliot has leukemia.

I was afraid on some level of all of those things. Motherhood. Labor. Motherhood again. Balancing two kids. Illness. Disease. Death of a child.

A month ago on January 18th marked the end of induction and the end of 4 weeks of steroids. It was what they say was the end of the hardest month of Eliot's treatment. It was also the end of Naomi's first year of life.

I told myself for a year before that day if I could just make it to Naomi's birthday I'd be in the clear. Things would start to get easier.

Today is the 18th again. Things don't feel easier. Parenting feels like an increasingly challenging, soul wrenching, sanity sucking affair. I'm starting to get convinced that it doesn't and isn't going to get easier. That easy was back when Eliot was an infant and there was one child and I had a house cleaner and a yard and friends and space to breathe.

Um. Duh. Blushing.

You wonderful people. Not one of you has pointed out to me that the female counterpart to the testicles is actually the ovaries. Silly. Silly me. I thought for most of a day about whether the vagina or the uterus were the counterpart. Uh Doi-eee (fingers spinning around ears). Anyone home. Yeah. Mommy has ovaries. Naomi has ovaries. Eliot has testicles. Goodness. Oh goodness.

Scared

I'm scared Naomi is going to get or already has leukemia. They say she has a slightly higher risk of getting it than the average kid. They say she probably won't get it. They say if lots of people in our family had blood cancers she would be at risk. Lots of people in our family don't have blood cancers. Few people in our family even have cancer. Still. With Naomi's mystery fever this week (which managed to go away by the next morning and leave behind just a kind of tired, kind of clingy kid) I got scared. What if this is the beginning - Eliot's leukemia became apparent first with crabbiness then a little fever. I check her legs for the tell tale purple-y dots. I pray. She is healthy. She is healthy. She is a healthy kid. Thank God she is a healthy kid.

Eliot Want Gina

WARNING: long post with lots of 'swim-suit area' talk

I've gone back and forth for days now about posting this story. Its the kind of thing I absolutely, positively don't ever want to forget. Its also the kind of thing I can imagine Eliot wanting to disown me for in about 10 years. I'm not sure this is worse than the fact that I called Naomi a bitch today in a moment of extreme tiredness. Dear God please watch over both of my children. If disease doesn't get them my horrible mommy manners might be the thing.

So here is the story.

Last Thursday Naomi (or maybe Eliot) jumped on Aron and hit him right in the testicles. Aron did his usual man groan/scream from the gruelling pain and I'm not sure of the details but Eliot and Aron ended up discussing testicles. They talked about how Eliot has testicles and Daddy has testicles and they both have two of them and that they're near their penises. Eliot ended up grabbing his butt during that part of the conversation. Interesting.

He and Aron went through the whole Eliot has testicles. Daddy has testicles. Naomi doesn't have testicles. Mommy has testicles. They're my testicles Eliot, Aron said. Someday Naomi might have a pair too. And someday she might not. I explained in my most wife-become-mother voice (I so wasn't going to be that person) that that kind of information was overload for a two year old. Hello Aron. Lay off the weird for a minute or two would you!

The next morning while giving Eliot a bath I pointed out his testicles. We went through the Eliot has testicles. Mommy doesn't have testicles thing. I ended up being late for a meeting and jumping into the shower while Eliot was playing about a half hour later and he pointed at my 'area' in dismay. Like where are all of your parts Mama. Oh brother.

That evening Eliot, Naomi and I were hanging out in Eliot's room and the topic of testicles came up again. Eliot was saying that he had testicles and Daddy has testicles and Naomi has testicles and Mama has testicles. I told him he does have testicles and so does Daddy and Mama and Naomi don't have testicles. They both have a vagina.

Here is where I admit during the other two conversations I was struggling to figure out which body part I would suggest I have rather than having a penis. I was literally trying to figure out if I should say I have a uterus or a vagina. Anyway. I digress.

When Eliot got word of the vagina both Naomi and I have he said, "Eliot want gina." Yes he said, "gina." I told him he has a penis and Naomi and Mama have vaginas. He said he most certainly wanted a vagina too. This went back and forth for a while and Eliot pretty much couldn't believe I wasn't going to hook him up with a vagina. He went into problem solving mode and said he was going to go downstairs. Get a bag. Put on his jacket. Go to church. And get himself a gina. Yup.

Go downstairs. Get a bag. Put on his jacket. Go to church. Get a gina.

Yup. That's what he said.

All I can imagine is that he is connecting what Aron does everyday to getting a gina. Aron goes downstairs. Gets his bag. Puts on his coat and goes to church everyday. As far as the last step. I'm going to assume that is Eliot filling in his own version of the details.

Earlier in the day he wanted the fish off a magnet with two pelicans. I started telling him he couldn't have the fish. Then I pulled an imaginary fish off the magnet and ask him to hold it carefully so it didn't fall out of his hands.

So after the getting a bag and going to church to get a gina didn't pan out for Eliot he held his hands out carefully like he was holding something. He said, "Eliot have gina." He walked around with it for a while. Then he stuck it on the wall behind his bedroom door. Yup. He stuck his imaginary gina on the wall behind his bedroom door where it still sits. We haven't talked about it since.

And Now I Fall Apart

So Eliot is basically bald. He actually got rug burn on the top of his head tonight from doing his 'moving yoga' on his bedroom carpet. Yes my child is bald and that doesn't really make me cry. He is also happy and doing well. So at least so far I haven't cried about that.

He talks about his port all the time. Tonight he said he didn't want Mama or Daddy to touch his port. He talks about his babies port. We found a scene in Cars when Doc gives the Sheriff medicine in his port and he watched it over and over and over again yesterday and today. So my kid understands and talks about a major medical thing that is stuck in his chest next to his heart. That doesn't make me cry. At least it hasn't yet.

We give him poison before bed every night. Yup. Right after changing his diaper and right before brushing his teeth. I have to hear my kid tell me that it tastes yucky and still make him take it anyway. That royally blows. Still I haven't cried about it.

Tonight I saw a commercial for going RVing. A seven year old sat in the back of an RV and saw the country and brought home a bunch of memories. That made me cry. Yup tears. Over an RV commercial. Someday Eliot will be 7. He'll see things that make an impression on him. He won't forget those things. They'll be good things.

My kid is going to live to be 7. He'll live to remember wayyyy back when he was 7.

Well I'm crying now. Again. Goodness.

Cool Project

Check out http://50alleluias.blogspot.com. Its a project I put together for our church.

We're making a booklet and/or daily email of meditations about resurrection for the Easter Season. We're raising money for the Millennium Development Goals too.

I'd be super honored if you signed up to receive the meditations.

Super Waffler Strikes Again

I'm strongly leaning toward the private blog. I'm going to do it. I'm going to. No I'm not. Don't do it Sara. Yes do it. Don't.

Oh hell. I don't know what I'm doing. I do know this. I'm feeling less motivated to put pictures of the kids up here without this being a private blog. I know this too. I've heard from at least 2 people who found the blog through odd channels who have thanked me for writing it. I don't really feel awesome about cutting off other future folks.

I know this too. I have my saramcginley.blogspot.com blog that I don't intend to make private.

Here is the deal. Email me at saramcginley at g mail dot com and let me know you want access to the blog. I'll email you an invite. You'll need to set up a username and password to get into the blog. I'm going to make it private soon.

I'm also putting it out there that this material is the seed and maybe the skeleton and lots of the guts for a book I'm publishing. This stuff is going to be out there in a bigger way. You guys are just seeing the beginnings. Too many people have said that to me in my loving community for me to not embrace it.

Good News. Bad News.

The good news for today.

Our ice maker is working. Yeah. I think the pipe was just frozen. The even better (I know can you even imagine news better than a working ice maker this is going to be soooo good) Eliot is in tip top silliness mode. He is super silly. He is energetic. He is talking like a wild man. He is walking and running and climbing and absolutely two and absolutely amazing. If it weren't for the hilarious hair do he is sporting these days (imagine super bald meets super grown out) you'd think he was any old kid. Silly. Cute. Adorable. Kid that is.

The bad news for today.

Naomi is sick. Fever sick. Go to the doctor sick. Crabby. Pissy. Clingy. Sick. She has a virus. They checked her for the flu and she doesn't have the flu. If Eliot gets sick. And please pray or meditate or chant or cross your fingers or all of the above for his continued health and vitality we'll be back in the hospital. Positive thoughts. Positive thoughts.

Eliot is healthy and at home for the duration. Eliot is healthy and at home for the duration. Eliot is healthy and home for the duration.

Pediatric VIP

I called about Naomi's fever today and they gave me the whole 'its nice that you called but chill out you freak-show' routine. Then I mentioned that Eliot has leukemia and it all changed. They had me in for an appointment - which started early - within a few hours. They treated me like I had every reason to be there. They asked lots of concerned questions. Wow. It was great. There was none of that condescending air of superiority. None of that chill out woman its just a tiny little fever. I felt no need whatsoever to apologize for wasting their time. It was wonderful. Wonderful. It blows too. Goodness. You don't really want to be a VIP in the medical system. Not like this. I mean. Not really.

Thursday Update

Eliot, Uncle Rob and I went to the hospital this morning for Eliot's second-in-a-row and second of three in a row spinal taps this morning. Uncle Rob came because we recorded some good sounds for a radio show we're doing about our experience with this.

All news is good news today. He made it through the procedure just fine. They said he is doing excellent. They said keep doing whatever you're doing because its really working. I still give credit for Eliot's excellent status to prayer, prayer, prayer and all of the support we've received.

His liver something numbers are a little high but that isn't in any way unexpected since pretty much all of the medicine we're giving him messes with his liver. His red and white blood cell counts are low for a healthy person and within a nice range for a kid in his situation.

They're surprised he has been home since they discharged him from the hospital. He is doing just incredibly well.

Yeah!!!!!!!

Baby of Frankenstein

Naomi is a flourishing walker. At about 5pm tonight she walked (strangely enough away from her favorite person Auntie Nancy) from our dishwasher all the way around the corner -- probably about 7 feet. She has been walking her little feet off like a mad-woman and that really got things going.

She spent a large chunk of the evening walking up to stationary object, pulling up and walking as far as she could go. More often than not she made a sort of growling, sort of Frankenstein sound, loudly. She is a new walker so her walk is kind of robotic. King of, well, Frankenstein-y.

Why didn't anyone tell me all of Aron's body parts were sewn on by some mad scientist.

Pritty

Eliot colored on his 'girlfriend' Sally today with marker and when he showed it to me he said, 'Sally pritty.' I said I thought she was pretty too. Then a little quiet moment went by and he said, 'Mama pritty.'

Clearly this kid sees through to a person's soul because I was literally wearing my pajamas at 3 in the afternoon, my hair was a mess, I hadn't showered or brushed my teeth. I wasn't looking terribly pretty. I wasn't even wearing a bra, my poor girls are just holding on for dear life.

Words can't say what that was like. I never, ever anticipated a lot of things I've experienced in my life lately. This is one of them. It never occurred to me that my 2 and a half year old would call me pretty. Certainly not right after he called his most beloved Sally pretty.

Shit. The beauty and wonder of these kids is never ending.

Update on THE Post

I emailed the woman who posted the picture of Naomi and I along with her obvious displeasure (and I failed to mention her total and complete mis-quoting of me -- I didn't say I think the church can save the world I said CHANGE the world - anyway) and asked her to remove the picture.

I just received a very nice email from her saying she took the picture and Naomi's name off her blog. She said she was sorry she didn't do it sooner, she has been off-line for a week. This makes me happy:)

Reconsidering

So I'm a waffler it seems. I guess there go all my hopes for the Presidency.

I've been encouraged by a few folks whose opinions I really respect to stay public with this blog.

I'm all over the place about it. If I do in fact write a book this stuff will in fact be very public. Still it seems a lot easier to link and access on-line than in public and (yes this is super stupid) pedophiles seem more into the Internet than books (gosh that is stupid).

The woman who said those things about me didn't actually link to THIS blog and the picture she posted is one SHE took so that could have happened with or without this blog.

So I'm just floating around out here in indecision mode.

In the mean time - wow I'm blown away by the people who have written to ask for access. Two people have written who I don't know at all. Wow! Wow! That is so cool!

Going Private Again - this time for real

So I just typed saramcginley and eliotandnaomi into google and found a few too many links and amazingly a lot of conservative church blogs talking about me. Its fine if people talk about ME not fine if they talk about my kids.

So here is the deal. I'm turning this blog into a private blog soon. I'll leave saramcginley.blogspot.com public and put my thoughts about mothering back over here.

Please email me at saramcginley at gmail dot com to request access. I'm more than happy to give you access unless you're a freak show or a slanderer or put a picture of my kid on your blog in a way that annoys me and don't even tell me you've done it.

Naomi Walked

She took her first independant steps the other day. A few at a time. Two or three at the most.

Today she took several and did it several times. She kept pulling up on things and then walking. She had this proud, happy, wait - extatic look on her face each time. If her lips had been super dry she would have cracked them wide open.

She is a walker. She is walking.

There is more commentary about Naomi the walker and some whining too over at my other blog.

I Understand the Meat and the Cheese but Why the Bun

Eliot, Naomi and I just unwrapped the last of the Christmas presents, a gazillion fruits and vegetables and cooking tools with which to play grocery shopping and cooking. I bought them months ago and they just never quite made it out of the closet until now. I've been so excited to play with them and as it turns out it was fun enough to put off nap time for a half hour.

The first thing we opened was a bunch of fruit. Naomi played with hers with what I would call some enthusiasm. She pulled out a few pieces of fruit and put them in her mouth and then grabbed Eliot's and was pretty into it.

Then we pulled out the pot for cooking and the toaster and she was basically interested in whatever Eliot had. Then we pulled out the spatula and things pretty much stayed the same.

Then I pulled out the tray of meat. A hamburger. A hot dog. A sausage. Two pork chops. Naomi went bonkers. She grabbed every piece and put them all in her mouth and her eyes were gigantic and she held onto them. [this is where a pervert would insert the gross little girl and meat joke and although I consider myself an irreverent parent I cannot go there - so don't even say anything like that in the comments]

Naomi had just finished her lunch of cheese. I had offered rice and garbanzo beans and milk and fruit. Naomi ate cheese. That lunch followed her breakfast of cheese. I offered Cheerios, milk, fruit and bread. She ate cheese.

This little girl is most undeniably Aron's offspring.

And this post is most undeniably the clunkiest thing I've written since perhaps the third grade. Goodness. My brain is frozen.

Dates. A Bunch of Dates that Mean A Lot and Mean Nothing.

We have the rest of Eliot's treatment laid for us on something like 20 pieces of paper. A lot of the paper lists side effects that include a list of things I can't repeat here. Ug.

Most of them are rare. Things that rarely happen. I just don't want to even look at them right now.

I just sat down with my calendar and his treatment plan to figure out where we're at and when things are going to happen. This was a silly thing to do. In reality at any point, just like last week, we could end up getting off track. Still, I'm curious to see what would theoretically be happening during the week we've scheduled to be on vacation.

Sadly from what I can tell he'll need a clinic visit right in the middle of our vacation. Who knows. One week of oddness could mean that doesn't happen. Or perhaps I figured this out all wrong. I'm guessing they'll work with us so we can still go on vacation. If not I'm sure we'll figure something out. Its wayyyy off in August anyway.

If we somehow push his treatment back a week so that he doesn't need a clinic visit during our vacation it probably means he'll need one on his birthday. That blows.

Here's to hoping I'm bad at reading these barely decipherable forms and whatnot and that I'm off and we'll sail through it all.

If I figured everything out correctly too it means that June 28th will mark the beginning of Eliot's maintenance treatment. This is the time when his chemo will be less intense and his hair will grow back and his strength and he'll be able to go to the park and the Children's Museum and the store.

The most exciting news I read today in our gigantic packet is that Eliot's treatment will end 3 years from the start of Interim Maintenance (interestingly girls only get 2 years tacked on). As long as we stay on course for the next month that means that March 1, 2010 will be the magic day.

I'm not crossing bridges until I'm standing on them lately so we'll see. We'll see about all of these magic dates. We'll see when we get there. Still. The planner in me is having fun looking.

March 1, 2010. March 1, 2010. March 1, 2010. Weird.

Health Update

We went in this morning for Eliot's scheduled spinal tap (to get some chemo in his spinal fluid) and start this phase (or stage or whatever they call it) of his treatment (called consolidation). This is the treatment he didn't get last week because his blood counts were too low.

His counts were within the acceptable range (he had 800 neutrophils and needed 750) so he got the spinal tap with methotrexate and then we went to the clinic for his push of vincristine. We'll start him on his oral chemo tonight. Its called mercaptopurine and the only reason I'm remembering all of these things is because I have some paper in front of me on which they are written.

His liver numbers were back into a nice happy range. Yeah!

For a day Aron and I anticipated would be pretty crazy it was a pretty nice time. Aron talked sports with the doctor. The only crying happened when they needed to open Eliot's shirt to put the needle into his port and then take it off. Eliot slept through most of the time he needed to lay down after his spinal tap. We had some good games and had a good time.

They also said (this is a direct quote) Eliot is 'above the board' as far as his health. They are very happy with how he is doing. They said many children have already been in and out of the hospital again by the time they get to this part of their treatment.

Keep the prayers coming. They're working. I really. Really. Believe they are.