Hats and Hats and HATS :)

We are having fun with this hat thing.  Thank you Stacia!  Even people who are not signing up on the website are sending us hats.  A very nice, fun distraction. 

This week Andrew received hats from Ohio:

Colorado:

and Outer Space:

(aka Elitch Gardens in CO).

Thank you for the sweet notes, treats, and thoughts which accompanied them!

I just bought some hat racks today to hang in his room :).

My apologies to the good ones

I know on various occasions I have gone on venemous tirades against those in the medical profession. I am sorry. It has come from a place of pain and frustration.  I know there are plenty of beautiful, compassionate, empathic doctors and nurses out there.  Many of them are my good friends.

My OB is amazing.  Andrew's oncologist is wonderful. Andrew's neurosurgeon was wonderful.  Many of the nurses on the floor are sweet and empathic.  I am hoping that soon I will be able to say the same for my regular oncology nurse.


So why am I complaining?  I suppose it is the overall experience.  It feels calloused and doctor -focused.
 
When I enter the hospital doors, my body begins to shake.  Despite the many good doctors, my experience so far, has not been especially positive.  I know we are receiving the treatment Andrew needs in order for him to have any chance of life.  I just wish there were a more humane way to receive it. It is so damn painful.

I suppose there are no better solutions, but hospital living is horrendous.

As soon as we discovered Andrew's tumor, we were shuttled off to a room, with a moaning roommate, whose blinking lights and noisy alarms went off all night.  I am sure they appreciated our intrusion as much as we appreciated their company.  It was a Saturday, so there were few doctors around, just interns and residents with lots of repetitive questions, and few answers. We had to wait until Monday to meet with anyone about surgery.  It was a long wait.  Lots of testing, and Andrew was prohibited from eating.  Parents have to use the bathroom down the hall.  It was horrendously hard.

Our neurosurgeon, once we met him, was beautiful.  He sent us home for one day of play before coming back in for Andrew's surgery.  He did a great job removing Andrew's tumor and Andrew recovered quickly.  I am thankful for him.

Unfortunately, we were then shuttled off to another shared hospital room.  Where once again, we were with a roommate, this time, someone who stayed up until 11:30 every night.  Blood draws were every morning at 4 am, and Andrew woke up screaming every time.  Sometimes he did not go back to sleep.  Once again I was forbidden from using the bathroom in the room. 

At one point, right before the diagnosis had been given to us, the transportation showed up to take Andrew to tests on his heart and kidneys, with no explanation, and no diagnosis.  Apparently everyone knew his diagnosis, but us.  The doctor showed up later and apologized, and then gave us his diagnosis.  He was a very sweet man, but his English was so choppy,  it was hard to understand him, and hard to understand all that he had to say about Andrew's diagnosis.  It would have been hard enough to hear in a sweetened-up English voice.

Then our assigned doctor showed up (we have since switched).  She did not greet us, or smile during the entire time.  She was as gloomy a person as I have ever met and proceeded to give us all the worse case scenarios.  She was followed up by her nurse, who seemed to relish the power she had in the situation, and described in a very cold manner the side effects of chemo, and all that would be done to him in the next year.  When they left the room, there was the most depressing solemnness I have ever experienced.  My parents were there, my husband's dad was there, and I was there, unfortunately.  I am glad that the information was over Andrew's head, because he was there as well.

And then there is the clinic office.  My nurse is just not an empathic person.  It has been hard.  I would never share any concern or feelings with her, because I don't trust her care or concern for Andrew.  I am just in shock as well that they would take these children who are already tortured every day by chemo, and needles, and medicines,  and then stick toothpicks up their nose every time it runs.  It just boggles my mind.  I start to feel like they have forgotten that these children are just as human as their own kids at home. 

And then when I go to the ER we are bombarded, each time, with interns, and residents, and nurses.  We usually get there late at night, and are visited every fifteen minutes by someone new.  I actually had someone ask me his diagnosis at 3 in the morning.  There are so many things about all of this that just feel so inhumane.  It seems like things could be done differently, with the patient and his family in mind.  It makes me rageful.

I feel like I am expected to have a supernatural threshold for emotional pain, and God- like grace, and unending tolerance.  But I don't.  I am wearing thin from all of it.  It seems so calloused and routine for them.  It is traumatic and heart-wrenching for me.  It is traumatic and painful for Andrew.  We got a horrible diagnosis, and then got thrown in prison.  That is what it feels like.

So my anger is very real, and constant.  I am trying to figure out how to channel it, but where should it go?  A lot of it goes here. 

So I apologize to those who read and may take it personally.  I appreciate all of the love, and care, and compassion you put into your job. It is very needed out there in the medical profession.  Thank you for all that you do.

my precious

his pink cheeks have paled
his sweet hair is gone
his chest is painful; hugs have become cautious
his eyes have saddened, one droops slightly
his smile is obscured, too often
his mouth hurts; he cries
his gums and lips bleed
his fingers pick; they are nervous
his body imprisoned, hidden from germs, and playgrounds, and friends

my heart rages.
my lips are disgusted.
my gut rants.
my eyes flow.
my stomach rejects.
my heart and my eyes anguish with each glance
my mind tries to console, and reason, and reflect.
my soul hopes
my spirit prays

his toes are still the same toes;
his eyelashes are still long, and beautiful
his spirit is still alive, and singing
his body is still dancing
his laugh is forcing it's way through the pain, determined
his joy is stronger than chemo
his play will not be disrupted
his hope is unquestioning
his mind is slowly accepting
he is coping


better than i

i want to punch someone
I want to punch someone over
and over and over and over and over and over and over and over again,
hate is creeping in

but there is no one to blame.

so THIS is pain.

we are doing our best
I am his comfort
he is my prayer;
he is my hope;

he is my precious.

Tattle Tale

Well, I finally did it.

Monday is why.

On Monday, I went to the clinic.  SO relieved that the chemo would be outpatient.  I think there may actually have been a skip in my step.

I show up.  The Nurse Practitioner peeks her head in the door.  "I'm so sorry about the bad news."  Thump thump thump my heart almost jumps out of my chest.  "Bad news?" I said.

"Yes, that you won't be able to do this outpatient..."

"WHAT????" I screamed (yes, I actually screamed).

Nurse: "Your health insurance didn't approve it.  You would have to pay 100% of the cost."

Me: "WHAT??  they would rather pay thousands of dollars for hospital care instead of allow me to do the work outpatient??"

Nurse: " Our home healthcare provider is not contracted with your insurance."

Me: "WHAT??" My body is literally, visibly trembling as I fumble through my purse, trying to call my health insurance.  The nurses quickly back away as they can see that something very bad is about to go down, or around, or possibly near their face.

After several minutes of fumbling and trying to get phone numbers, and calling my husband almost crying, I finally get through to a claims agent.  They wonder why I am so upset, because they do cover it.  If it is out of network, it is covered at 70%, if in network 100%.  This provider happened to be in network and it would be covered 100%.

NO ONE CALLED THEM until I did.

The home healthcare provider made an assumption about my insurance, assuming it was another one? another one that does not pay their bills.  And without calling my insurance, decided that they would not accept me as a patient. 

Then, my nurse, (remember "Ursula"), not checking for herself, but taking the home healthcare provider at their word, called and left me a message (while I was on vacation).  I did not check my messages.  No one called my cell phone.

No one made any attempt to call my insurance to verify until I did. Until my shaky hand finally managed to get though to a real live person and ask one question.  "Am I covered?"  "Yes."

That was it.  Easy as pie.  But first I had to be tortured by incompetence.

So today I finally complained.  I spoke with the social worker advocate and told her my concerns and requested a new nurse. She said that may not be possible, and that she would try to work things out with my current one.  I'm not so sure how that will work. 

Tomorrow I speak to the nurse supervisor.  I will press for a new nurse altogether.  I'm sure my complaints will not improve our current relationship.

What are these people thinking?  I think before becoming a nurse or a doctor you should have to spend a month straight in a  hospital, with a noisy roommate, and be woken up at 4 am every morning for blood draws.  It would definitely give them more empathy (even without the traumatic diagnosis to go with their stay).  I bet every single one of them would turn into a belligerent loon.  Maybe they'd at least get their butts moving when it came time to release patients.  Maybe they would advocate for me, and actually call my insurance, rather than jump to someone else's conclusions.

I was trembling all day.  Even after they told me it had all been worked out.

You Capture: Get Down Low

Here are a few pics from my week,

where someone,

either my "subject," or I, got

 down low.

Andrew peering into the ruins of a Native American cliff dwelling.

I had to get "down low" to get the full effect of this

cheeto-stained,

booger-smeared, precious,

happy face.

Looking for bugs?

What shoe doesn't need a little more dirt on it?

Last one up

Three days of Mercy

I have been so busy, I haven't had time to sit down at the computer!

Which has mostly been a good thing.

A week ago, I was begging for some mercy.  Apparently God, or a friend, or both, heard my pleading.

First, our chemo was delayed a few days so that we can now be on a weekday schedule rather than a weekend schedule. 

Which in itself will hopefully be much easier on our social life. 

Lately we have had to ditch friends in the middle of dinner to rush Andrew to the hospital with a fever. 

Hopefully this change will allow us to feel a little more connected.

The extra four days also allowed us to plan a little vacation. 

 And breathe a sigh of relief.

This past weekend some friends of ours invited us to use their "cabin" up in Flagstaff

(northern Arizona, about 20 degrees cooler than Phx area). 

I pictured the standard cabin--drafty windows, rugged interior, etc.

and was excited about it. 

But then we got up there.  This place was a resort. 

There was a pool, kiddie pools, restaurants, golfing, a spa, and on and on. 

 And our friends (while not there) paid for all of it. 

We went out to dinner and got out our credit card, and were informed that

 "the bill had been taken care of." 

 I decided to splurge and get a massage. 

I got out my wallet, and was told the "bill had been paid." 

Everywhere we went they treated us like royalty.

They even paid for our gatorades and M & Ms out by the pool.

  It was truly amazing. 

And the scenery was absolutely gorgeous! 

We were able to relax, play, hike, take pictures, spend time together,

and try to take our minds off of our current situation. 

It sure felt like mercy.

And when we arrived home, we had two hats in the mail!

Thank you to the beautiful people in Georgia and Florida. 

Andrew is enjoying the packages and his fun new hats!

(His brothers are enjoying their goodies too. Thank you. So sweet.)

And now back to our chemo reality. 

But even then, there has been mercy.

We are at home.

Three hours in the clinic each day for 5 days, and then back home.

Back in our own beds, eating dinner together,

and trying to live as normally as possible.

We continue to be amazed by the generosity and thoughtfulness

of friends and "strangers." 

Mercy indeed.

You Capture: Water

I thank God for this most amazing day,

for the leaping greenly spirits of trees

& for the blue dreams of sky

& for everything which is natural,

which is infinite,

which is yes."

 

 

— e.e. cummings

 

We had an amazing day in the water.

Hope you did too.

 

 

Worn

Just spent another two nights in the hospital.  More needles , more pain, more suffering.  I am worn out and depressed.  In addition to killing cancer cells, the chemo also kills off all of Andrew's white blood cells, which makes him extremely susceptible to infection.  If he gets even a minor fever, they fear  bacteria could quickly take over his whole body.  So with a fever of 101, we have to rush to the hospital.  And commit to 48 hours of antibiotics. And we just spent last weekend there getting chemo.  And then next Monday, more chemo.  We need some mercy.  There doesn't seem to be any.

I am getting to the point where I don't want to talk or write about it anymore.  I just want to crawl into a dark dark cave and feel sorry for Andrew and for myself.  I keep thinking of the people in concentration camps and the orphaned children in Africa, and people all over the world who had/have it SO much worse than we do.  How did/do they get through even one day?

I get bogged down with worry and fear.  And the constant intrusion into our lives. And shuttling our crap back and forth to the hospital.  And the constant chasing Andrew down to give him his "treatments" of horror.  He cries when I wash his hair, let alone poke him with needles and force him to gargle "boogers" (his name for the yellowy pasty nystatin he has to have swabbed on his cheeks three times a day).  ENOUGH.  Yet we have many more months to go.

I feel so angry that I am so vulnerable around these doctors and nurses.  I don't like my role of "patient's mother."  I don't like to be vulnerable in front of other people, especially people I don't know.  I am rarely vulnerable in front of people I do know (except when I am writing).  I don't like to be seen in the miserable heap in which I find myself.  I just feel like "Who invited you?  I don't even know you.  How dare you intrude into my pain?"

I imagine these doctors and nurses not caring one bit, and doing their work, getting their paycheck, and going home to their nice comfy couches and cancer-free children.  I resent that I am at their mercy.

 I have to coach myself into not feeling angry.  I have to coach and convince myself into accepting that they are trying to help Andrew, even if their solution is to poison him first.  My gut is in complete rebellion, but my mind keeps trying to convince it.

When I used to hear about cancer happening to other people, it always made sense to view it as an unfortunate mutation, a horrible random thing that life throws at us.

But now that it has happened to my two year old son, it feels pure evil.  As if some evil being knew exactly the right button to push.  With one mutated cell, it is able to destroy lives, destroy families, create pain, create anger, create more evil, create a domino effect of horror.  The perfect plan of destruction.

I'm worn out.  And I'm not even the one who's sick.  God have mercy.

Thank YOU!

Thank you to all of you amazing people out there, praying and rooting for Andrew.    Thank you to those of you who have taken Andrew's button and posted it on your blog.  We appreciate so much your thoughts and prayers!

Some people have gone above and beyond and I want to let them know how much I appreciate it.

From the beginning, WackyMummy has had a very touching prayer on her blog for Andrew.  Thank you so much Wack :).

Several weeks ago, CJ approached me about making me a button for Andrew, the one you see at my sidebar.  I had/have no idea how to make a button, so she helped me put it together.  Thank you CJ!!

And then Stacia came up the amazing idea of a website for Andrew where people will send him hats once a week, from all over the United States (and Wacky Mummy is helping to involve Canada).  I am so overwhelmed by her thoughtfulness and all the hard work she put into putting this website together: Hats Off For Andrew.

Here are a few pictures of Andrew in his first hat, from TEXAS. 

HOOK'EM HORNS! :)

(Well, at least Andrew was trying to "hook'em")

Thanks again!! :)

Look at me Mama!

"Look at me Mama!  Look at me!!" he says, as he stands perched on the pool edge, holding my finger, getting ready to jump.  So of course, I look at him.  With an excited grin, he jumps, and lands in the water, completely submerging his bald little head. Watching his smiling face emerge from that water is a slice of heaven.  Stretching from ear to ear, I can see pride, elation, joy, relief, and exhilaration beaming out from inside his little soul.

So we do it again.  "Look at me!!  Look at me Aaron and Sammy!  Aaron and Sammy look at me!!!" and amusedly, but slightly annoyed they look up at him and say (for the 30th time) "We see you Andrew!  Do we have to watch you EACH time?"  and, although unspoken, the answer is, "yes."  Because EACH time, he demands an audience before he jumps. So even if it is for the "wrong" reasons, (i.e. they just want him to jump and leave them alone) they look.  But, then he returns the favor as they practice their new dives and painful looking front flips (which often land them smack on their backs).  They cheer for him, he cheers for them.  It is sweet.

His smile is so bright, and so proud, and so darn happy I cannot do it justice with words.  It makes me SO wonderfully happy to see him enjoying himself and not running in terror from a mouth treatment or sitting on a hospital bed.

I am ready to spend ALL DAY in the pool, holding his trusting little hand while he jumps, telling him what a brave, beautiful, amazing boy he is. 

You Capture: Fun!

Well, I didn't have a lot of time to edit this week, so I didn't.

But maybe that is because I was spending it having fun instead of sitting at my computer editing pictures. 

That will be my excuse :).

We did a lot of swimming.  A LOT.

We had snowcones.

The boys had a bubble bath.

(Andrew, the abominable bubble man)

And who could resist a misty wet dance floor when wearing squeaky new dress shoes?

Now THAT is fun.

My Blessings

Today when I saw myself standing in front of the mirror,

in my bathing suit,

in the middle of the day,

on a Tuesday,

the thought struck me: 

"I have so much to be thankful for.  Here I am about to go swim with three of my favorite people in the world." 

And it made me think of all of the other ways I am blessed. 

Sometimes it is too easy to forget.

My Blessings

My sweet boys.

Our beautiful parents who love their grandchildren.

And play with them.

Often.

A postive, optimistic child who plays

"where is Andrew" with his blankies while

chemotherapy is rushing through his veins.

A husband who loves to play with his boys.

A husband who loves me.

Good health insurance!

Those blue eyes.

And so many more.

Happy Tuesday to you and yours.

Because every day is a gift.

Branching out?

Last night, my husband saw me writing something down on top of a book.  He perked up and was like, "whatcha doing? making notes about something?"  Me: "no."  Him, disappointedly: "Oh, I thought maybe you were getting interested in something."  And he meant, "something other than sitting around thinking about cancer."  Poor hubby.

I admit it! I have had a one-track mind, unfortunately.  And it doesn't help anything.  It has just been hard for me to even pick up a book.  or listen to the news.  or turn on the radio. or run.  I finally made it to a few social outings, and that was good.  Something distracting.  Something fun.

I am feeling a little less stuck in my deep dark reflective cave, so perhaps I can start to "get interested in something" again.  I am finally feeling like I might be able to go to playdates again.  Maybe.

I have a book about Pat Tillman I want to read.  It has been sitting on my shelf for two months, but every time I open it, I start daydreaming (about what? yes, you guessed it).  I may try again tonight, and really concentrate this time.

I have still been taking pictures, and that has been distracting, and fun.  I have still been writing, but as those of you reading this know, that has been a one-track thought process as well.  So I am going to try to branch out.

We'll see how it goes. :)

A Lesson in Worrying

I worked myself up into a frenzy yesterday.  A serious frenzy.  Andrew's runny nose and the the toothpick situation wasted about 10 hours of my brain space, not to mention the discomfort it caused my anxious nerves and angry stomach.  My impending roommate situation took up at least another 5 hours, as I called every hospital in town hoping they had individual rooms for pediatric oncology patients. (I was ready to switch doctors; I was ready to switch everything, just to have my own room where I could actually use the bathroom in the room, and wouldn't have to brush my teeth down the hall.)  There are plenty of hospitals with individual rooms.  In fact, most of them.  But none of them service pediatric oncology.  So, after a euphoric hour of thinking perhaps I had my ticket out of my youth hostel surroundings, I realized I was stuck.

This morning I was SO angry, anxious and upset.  I thought Andrew would be scared to come to the hospital.  I knew those toothpicks were coming; I knew my roommate was going to be a nightmare; I knew he would be stuck in his bed on the contagious third floor with no chance of parole; and I knew my doctor and nurses would be rigid and rule-oriented. 

So now I'm eating crow.  Andrew was happy to come to the hospital, and was hanging out by the garage door fifteen minutes before I was ready to put him in the car.  No toothpicks. My roommate may cry tonight, but I may cry with him.  Three and a half months old with a tumor in his brain.  His parents have been here for three weeks and expect to stay at least another two.  And then come back again for another two weeks after a small sanity break.  They have a little two year old daughter at home with grandparents and they will be spending most of the first year of his little life here in the hospital.  He is vomiting.  He is crying.  He is in pain.  Cards congratulating them on his birth litter their tiny window sill.

(In comparison, Andrew is watching Cinderella and ordering me around like the wicked step-mother.  "Get in bed with me Mama!!  I want my pillow Mama!! I want some juice Mama!!" No wonder he likes the hospital.  "Mama" is counting her blessings.  We are by far the more obnoxious roommate.)

We are on the second floor oncology unit.  Playroom access.  We can walk around.  His runny nose is still slightly runny, but the flexible doctor allowed us to bypass the dreaded "cell scraping" and give Andrew's snot the benefit of the doubt.  None of my nasty one-liners needed!  The doctor listened to my concerns and may make it possible for Andrew to do ALL of his chemo outpatient!  We will see.  There may be additional risk to his heart with that, so if that is the case, it is not worth it.  But the doctor listened! He heard my concerns.  And I am wondering what in the world I had myself so worked up about...

Today was much better than I worried it would be!

Now I'm hoping the side effects of this chemo round are as unworthy of my worry and anxiety.

You Capture: Best Shot

This was my favorite for the week.

:)

oh the horror of a runny nose

I just spent the last hour in Costco dreaming up my response to the nurses when they come in with sharpened tooth picks the size of chopsticks and tell me they are going to stick them up my son's nose.  Because it is runny.  Slightly runny. Very clear, but runny.  The same runny nose he had two weeks ago when they "scraped his cells" and found out he did NOT have one of the nasty six viruses they feared, but an unknown something (my guess: allergies, maybe the standard "cold").

I know, I know.  I just spent the whole last post writing about how I am trying to stay positive.  It is hard when your son is being mauled by nurses with sharp sticks.  If I brought him into the doctor's office, they'd take my co-pay and give me their typical response of "stop worrying your pretty little head and run on home." (Yes, my resentment of doctors and nurses is growing).  I understand they don't want to spread disease in the hospital, and I can put up with keeping him from his walks down the hall, and his painting in the playroom.  But if he is contagious, why are you sticking us in a room with another person?  This sharing a room thing is driving me bonkers.  I think two nights in prison might be easier.

So I came up with a few responses.  I haven't decided which one/s to use.  Maybe you can help me.

1.  What happens if I refuse?  Do you stick it up my nose too?

2. Do we rip out his fingernails before or after? 

3.  This in no way benefits him, does it? Just put us in a room by ourselves, we promise he won't come out.  Problem solved.

4.  When are you going to hold him upside down by his big toe and see how long it takes before I become a "belligerent" parent? Is that tomorrow?

5.  Is the witch doctor coming in before the bloodletting? or after the leeching?

6. Can I watch you do it to yourself first?  Let's see how long your nose bleeds and then compare.

7. NO.

I know. I know.  They are only doing their job. 

I'm trying to protect my child from as much pain as possible in this torturous, horrendous situation.

That is my job.  And this makes my heart sick.

The Dark Side

I keep having analogies run through my head...and one of them is Darth Vader.  "Come to the Dark Side, Luke."    Come to the dark side.  Be angry.  Be resentful.  Be frustrated.  Be upset.  Be envious.  Be miserable.   Take out your frustrations, you deserve it.  And I suppose there is a time for some of that... But I do not want the rage and the anxiety to take over my life.

I am finding this struggle to be so much about compartmentalizing my thoughts and emotions.  Cancer over here.  Pool party over there.  It is all too easy to put on my cancer-colored glasses and see everything through a shade of depressing.  So I am learning that there is a lot of mind control that goes into all of this.  I have to choose to find the happy and to enjoy it.  I have to trust that God loves us and will help us through this.

It is easier said than done.  But, a lot easier "done" when Andrew is feeling okay.  When we are not stuck in the hospital.  When he is smiling.   His little bald head and obtrusive painful port keep me from complete denial.  But maybe denial is not such a bad thing?

I had a great week with my boys at home.   We went swimming, we danced with the Wii.  We had fun with our new MarioKart.  Grandma and Grandpa watched Andrew on Memorial Day and John and I went with the two older boys to a pool pary.  Hooray for normal life!  We had a great time, and so did Andrew.

As I sat in church on Sunday I was watching some friends sitting in front of me with their 6 month old baby.  It seems like just yesterday they told us they were pregnant.  Time goes quickly.  And while I want it to go quickly for certain, obvious reasons, I don't want to miss and wish away my baby's whole third year of life.  I still need to  find the beauty in each day, count my blessings and appreciate the life and the joy provided.

The other analogy I think of is Lot's wife.  Don't look back.  Don't think about what was, or what could have been. It is just torture.  If I look around and think about the carefree way my life used to be, it is more difficult to cope.  Gotta look forward (but not too far), gotta keep making the best of things, gotta make the lemonade.

This week Thursday begins the more brutal round of chemo.  Last time it knocked Andrew out for almost a week.  He needed a blood transfusion, morphine, and looked as pale as Val Kilmer's Doc Holiday in the movie Tombstone.  It was so hard to watch.  I may easily slip into the Dark Side next week as I watch my poor little guy suffer in pain.  It makes me raging mad to see him suffer like that.  It may take too much effort to find the bright side, and maybe I won't.  The anxiety and anguish in my gut is already building.

But for now, I can say that we truly had a beautiful week at home.  And that can't be diminished by what may come.

Clinging to the Light.