Of Hats and Home

Okay it has been a while since I have posted about hats. 

But we have been appreciating them all the same! 

We have had a lot going on.... 

Thank you so much for the thought and care put into these packages.

We continue to be overwhelmed by your sweetness.

Here are the latest and greatest:

Michigan

Connecticut

New Jersey

Winnipeg

Brisbane, Australia

Nova Scotia

Thank you all so much!

We are SO HAPPY to be home.  

Our house is a disastrous wreck and we are still not fully unpacked. 

We have out-patient chemo every day this week. 

But it is home. 

And home is definitely sweet.

BAH!!

Did you just hear something?  That was me, finally releasing the breath I have been holding for 7 weeks.  I need to buy some wood to carry around with me because I have become so superstitious about writing something down, and then having it bite me in the butt.  So I have waited until now to tell you all of the things that DIDN'T happen in Houston.

Drum Roll please.....

1.  We never spent one night in the hospital.  NOT ONE NIGHT.  Do you know how humanizing that felt?  We did all of the chemo outpatient. It had to be modified due to the radiation, so outpatient was possible for all of it.  My packed duffle bag of bedding stayed in the closet the entire trip.  SEVEN weeks away from the hospital.

2.  Andrew didn't lose his eyelashes.  I know that may seem trivial.  But when your son has lost all of his hair, you hang onto things like eyelashes.  And his are so long and beautiful (if I do say so myself).

Eating a colorful cupcake in celebration of his last radation treatment.

3.  His skin doesn't have an appearance of redness, like a sunburn, which I assumed was a given.

4.  He is not blind.  Always a big positive.

5.  He did not have red irritated eyes.

6.  His lacrimal gland was not destroyed.

7.  His hearing is still great.

8.  We did not have to stay any longer than expected. Nothing delayed us, and there were SO MANY things which could have.

I AM SO THANKFUL!!!  Thank you for the prayers.

Things that DID happen:

1.  Andrew gained weight, about 1/2 a pound.  While his blood is taking more of a beating, he seems to otherwise be coping with the chemo much better than before.  He is happy and able to eat, most of the time.

2.  We had a vacation we would not have had otherwise, albeit extra long and painful.  We had times of fun and exploration.

3.  We met some amazing people.  And especially one amazing nurse.  Thank you C.

Every morning before radiation, Andrew would growl "like a dragon" at all of the treatment staff. 
They bought him a dragon as a going away gift.  So sweet.

4.  Do you know the Radiation Team bought Andrew balloons, cutie patootie clothes, a toy dragon, cars, and a truck to be taken apart and put together with a drill?  AMAZING.  If one has to put up with 6 weeks of radiation, this was the place to do it!!

At the end of the treatment Andrew got to hit a gong.  He hit it over and over and over and over again.  Good thing he couldn't read the sign:

So thank you for your prayers. I so often find that I pray and pray and pray, and then when the thing I prayed for comes true, I chalk it up to natural occurence. Not really fair, is it? There are obviously still many anxieties, and side effects that could rear their UGLY head in the future, but for now, I will be thankful.

If you are near some wood, knock on it hard for me. 

In...and out....In...and out.  My breathing has gotten a little more steady. 

But now I'm going to go sob somewhere.

You Capture: Get Outside!

Okay, getting outside! in Texas is easier said than done right now.  So hot and humid.  But we did it anyway.

I am packing up and heading back to AZ on Saturday!! (hooray!) so I didn't have time to edit these (very much), but I wanted to participate.

our picnic

the ants' picnic

Hello "little" guy! We found him on John's leg. He is about 3 inches long...

Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and give strength to body and soul.

John Muir

I can't delete this...ugh. I give up!

Waking up

He used to tug at my arm when the other boys were at swim lessons.  He wanted me to play with him.  I wanted to do my own thing. I wished he would just play on the jungle gym and entertain himself.  Makes me sick to my stomach now.

I never liked to sit on the floor and play with him.  I would try, and then get very distracted.  I always felt VERY guilty about that, but somehow, the guilt was never enough motivation to get me to sit down and play for very long.  I didn't know he was good at puzzles, and liked the game "Perfection" and already knew lots of his numbers and letters. 

I learned in the hospital playroom.  With a bandage on his head from his brain surgery, he taught me that he loves to paint.  Attached to chemo poles, he taught me that he loves to play "Breaking the Ice." 

I would bring my older boys to gymnastics and he would climb on me and wanted my attention. Once again, I wished he could play alone, so that I could relax.  I wrote this...

I used to be annoyed at bedtime.  GO TO BED! I'm done! 

Now it gets delayed for all of us.  We sit and play a little, read more books, or watch a little show together. 

I sing Andrew songs in bed again.  I hadn't really done that since he was a litle baby.  We sing "Amazing Grace" and "Sunshine on my Shoulders" and "All Night, All Day."  He sings along and makes song requests.

I used to get so frustrated at little things.  I suppose I still do, but they all seem so much more trivial than they already were.  The other day I was at Target with my two older boys and they were literally running in circles around the clothing racks.  I typically would have been embarrassed and frustrated and angry, and I was still a little of all of those, but at the same time, the thought most present in my mind was that they were enjoying themselves, playing together, and were happy and healthy.

I do not mean to suggest that God would answer my prayers of  "I want to be a better parent" by giving Andrew cancer.  That would be a disgusting, sadistic God. 

But I suppose that if I am honest, cancer has given me new eyes with which to see my boys.  I have a new interest in playing with them.  I now have lots of time (in the hospital) to spend with Andrew playing games, singing, and listening to his two-year-old opinion.  I have a new appreciation for each happy day, each happy hour.

I am just SO sick that he has to go through this horror.  But thankfully,  he is also getting to spend lots of time playing with "mama" and daddy and grandma and grandpa.  He is building lego buildings at the clinic.  He is putting together puzzle after puzzle after puzzle.  He is putting the pieces of "Perfection" into their appropriate places and he has an audience to clap for him when he sends the pieces flying. He is getting SO much more attention than he ever would have gotten. 

He would still be pushed way while I did my own thing, while we watched his brothers at their activities.  He would have a mother who was starting to resent the stress of three boys rather than appreciate the beauty of the days when we are all together.

An awful, horrible disgusting way to wake up.  But at least I am awake now.  I am paying attention.  I am on the floor playing, and cuddling, and talking. 

I hope in part it makes up for the pain and the shots and the mouth treatments.  These past few months have not solely been a year of trauma.  They have also been months where Mama stopped taking her blessings for granted.  Where Mama began to enjoy Snow White puzzles and playing "Ants in Your Pants."  Where Mama stopped pushing them away and started appreciating their company, their play, and their presence.

No more taking time, peace, and three little boys for granted.

A night out

John and I went out to dinner tonight.  I wore a dress and heels.  I think it was the first dress I have worn since April.  As I put it on, I thought, "The last time I wore this, I had no idea of the pain to come..."  I can be quite melodramatic in my own little thought world.

We went out with some friends from John's work who are in Houston for a few nights.  Familiar faces. Wow.  It has been a while.

After stuffing myself on a very-eggy-almost-omelet-creme brulee and decaf coffee (after the main course, salad, and appetizer) we walked out into the humid, post-thunderstorm weather.  And I started crying (silently, but tearfully). A delayed reaction; tears held in for about two hours after the toast given by one of his friends with the first glass of wine.  "To friends... who have been gone too long, but will soon be home."  Simple, sweet, and yet managed to catch me off guard.  I was fighting each tear duct to keep them from leaking.  It doesn't take much these days.  And I was successful until we walked outside and said goodbye.

"Why are you crying? What's wrong?" are questions my husband is getting very used to asking.  I just responded with, "Just the unspoken, "I'm so sorry" attitude of the dinner...."  "Yeah."   He noticed too.

Afterwards, John and I went to Borders bookstore.  I am becoming a connoisseur and constant consumer of journals...needed a new one.  I need lines and a little decoration, but don't want to spend 20 bucks.  John needed the newest Iron Maiden CD.  I also bought Julia Child's autobiography, My Life in France.  I'm excited to get started on it.  (I have four more days in the RTC waiting room with a book and my ipod...if the machine doesn't break down!!)

It was nice to get out and have some time together. 

5, 4, 3, 2, 1...almost there.  And then we will be home.

I hate dependent

As if having a toddler with cancer isn't enough, there is so much that goes with it.  Suddenly you are a captive to other (often slowly moving) people, most of whom are focused on their own schedule and could give a damn about yours.

I seriously feel like we became prisoners as soon as Andrew was diagnosed.  I almost feel amazed that I am allowed to walk freely around in the street.  For a while there, it didn't happen.

You become completely dependent.

You are dependent on blood to be delivered, and could end up spending six precious hours of your life waiting for it, while sitting in a boring hospital room with an anemic and irritable child who just wants to go home.

You are dependent on radiation machines which seem to break down at the rate of most copiers.

You are dependent on work schedules and doctor schedules and hospital hours and annoyingly inefficient procedures that seem like they could easily be streamlined, but aren't...

You are dependent.

I hate dependent.

I had a little freak out with the radiation treatment team yesterday (you know, the ones who are so nice?), because the machine stopped working last week and we had to miss a day.  Which meant that either we fit in an extra radiation treatment, or we had to stay in Houston another weekend and a day (THREE EXTRA DAYS).  And when your 6 year old is in Phoenix and has been for 2 weeks,  and when your house is in Phoenix and you have been living in Houston for 6 weeks, YOU WANT TO GO HOME.  You do not want to be told that you have to come an extra Monday for radiation when you WANT TO GO HOME and your precious tickets are scheduled for Saturday.

I had the freak out because they said that they weren't going to be able to fit in the extra treatment (after they had previously almost guaranteed that they would).  I didn't mean to.  But I couldn't help myself.  So I stormed out of there like a toddler who didn't get her candy and immediately proceeded to email and call everyone under the sun so that I could GO HOME.  And it worked. 

But those nice people in the treatment center didn't look so happy to see me today.  I think, to their credit, they were worried about giving him two treatments in one day.  But the doctor approved it, so I am thankful.  I thanked them for "fitting us in" but at least one of them didn't look so generous as to forgive me. So I feel kinda bad.  I don't want to end things on a sour note.  But oh well. I am crossing my fingers that all will go well over the next few days, and that the machine doesn't break down anymore, and that I can GO HOME!

I hate dependent.  I hate it all.

Thanks

Sometimes when I see my blog title and picture, I feel sad.  This is not what I intended for my blog to be.  I did not intend for it to be a serious, depressing, sad blog about cancer.  Didn't.

I wanted it to be happy, and light, and clever (I tried), or at least slightly humorous.  But I guess things don't always go the way we want them to, do they?

So I want to thank all of you who continue to read this, for being sweet and kind and supportive.  Thanks for reading, and for commenting, and for making me feel a little less alone in this sadness. 

take care.