Saturday, September 24, 2011

09/24/11 Out and About

Yesterday Adam had clinic.  They did his first LP of Methotrexate in Phase 2 (i.e. Consolidation).  Unfortunately, the procedure wasn't until 3 pm, so he was again tired, cranky, and ravenous.  He asked to go to the "planetarium" as soon as he woke up from anesthesia (meaning "cafeteria").  Lol.  Daddy took him to get pizza and Doritos.  Mommy spoiled him last time, so there was nothing else he could be convinced to eat!  Oops.  Oh well.  At least it's the little things that keep him happy.  Coming home he was tired and had a headache.  He napped on the couch for about an hour, woke up for a meatball sandwich (his third in three days), and a bath.  Since he almost fell asleep in the bathtub, we turned in early.  Both Adam and me!

The doctor said some things that made us feel pretty confident.  1) we almost made a record of how soon we were released from the hospital after he was diagnosed.  I wanted to know how close we were.. maybe we could find a way that we did break the record.  That's my alter-competitive-ego talking. 2) That he went into Consolidation much sooner than they expected.  Another great sign of recovery and we've got one tough cookie. 3) his ANC levels were so high right now, we could go out and have some fun without much worrying.  Basically, as long as we don't take him somewhere a sick person is going to breath on him, we're ok.  So, we decided to take the kids to Gilroy Gardens since we had bought a membership over the summer (that we've, of course, only used once).

Gilroy was fun, felt like the first thing normal we've all done in over a month, but also one of the most stressful experiences yet.  I have never been so aware of germs nor felt so vulnerable in public. All I saw were grimy fingerprints left on the handlebars of the rides, stray hairs on seats, kids sucking their thumbs and then touching hand rails, and the man getting out of the car we were getting into coughing all over the place.  Yuck!  We were at the park for 2 hours total, but at least 30 minutes of that were bathroom breaks to wash our hands.  I've never used so much hand sanitizer and soap - EVER!  On a lighter note, coincidentally we saw Elaine and the Mendenhall clan there!  I think the last time we ran into them was at the Monterey Bay Aquarium.  Random, huh?  You live 5 minutes from someone...  Anyways, Katie was excited to see Adam, but he was being standoffish.  Kind of his M-O right now - not real social and a little self conscious.  I think he was mostly pretty tired by that time and starting to get cranky.  That, or he already realizes girls have cooties?  He asked to leave while we were in line for the super-crowded train ride, and we were happy to oblige.  Nonetheless, the short trip to the theme park was a full day of fun for us.  The kids don't realize how long they were there - they just know they went to Gilroy Gardens today.  And I have pics to prove it :)  We'll take what we can get. 

Thursday, September 22, 2011

09/22/11 Phase One ---- Check!

Good news - we have successfully completed Phase One (of seven)!  Starting tomorrow, Adam is officially in "Consolidation." The purpose of consolidation is to make sure the cancer is fully in remission and stays there. We thought it would take days, maybe even weeks for Adam to qualify for the consolidation phase.  To qualify, his ANC levels (white blood cell/immune system count) needed to go back up to 1000, and last week he was only at 290.  A "normal" ANC is 1500.  So, when we heard 290, we were ready to pack up and admit ourselves to the isolation ward again!  Last Friday, his dose of chemo was a little lower than we've had in the past and just the small relief helped his body fully recover. After our blood test yesterday, Adam's ANC is now 2000!  What a difference!  Luckily, once again, we have a rapid responder.  So, of course the nurse called us right away to inform us that his treatment tomorrow will be the new consolidation medications. Who would have thought celebrating Adam's first time qualifying for something with take-out pizza and brownies would be for qualifying for new chemotherapy!  A milestone is a milestone, I guess. I'll take what I can get :)

I learned something else new in my research tonight: "When a patient is diagnosed with ALL, he or she may have 100 billion leukemia cells. If induction therapy destroys at least 99% of these cells, the patient is in remission. However, that could still leave 100 million leukemia cells in the body. If these cells are not destroyed, they can grow and multiply and cause a relapse of the disease" (  100 billion!  I had no idea the numbers we were dealing with.  Once you're talking above a million, it's kind of difficult to comprehend because there is not much to relate a number that large to. However, I do know that 100 billion is twice the amount of money Bill Gates has (I'd much rather have $53 billion rather than 100 billion cancer cells - call me crazy).  So, now I'm curious.  I can't find the exact number of total blood cells in a human body, but I found a source that says a "normal" adult has 30 trillion red blood cells. Coincidentally, that's twice the amount of the national deficit!  Ok,maybe I've gone too far.  Back to Adam...

Good news is we can check something off.  It feels strangely productive to be moving into a new phase.  Bad news, everything changes.  You know how I feel about change.  It is very likely Adam and my cooking marathon will be ending soon.  A common side effect of the new medication is nausea.  It is possible he won't eat for full days at a time!  As for the most obvious physical change (hair loss), I wouldn't say he is losing hair per say, but possibly thinning hair.  The hair cut makes it hard to tell.  I think we might be several weeks (maybe months) from complete baldness.  And we need to watch his skin for darkening or rash (he is also super-sensitive to sun.  Thank you September heat wave for your great timing).  It is also common that he will need a blood transfusion sometime this month - this chemo specifically depresses the bone marrow, so his counts will be low, and possibly not able to recover naturally.  So far, everything has been surprisingly manageable.  It's nice to still have a schedule for clinic visits (every week on Fridays).  In this next phase, we won't be accessing the metaport every week, instead spinal injections of Methotrexate.  We are also changing from 3 pills, twice a day to only 1, 1 time.  Our new pill is Mercaptopurine - its purpose is to block the growth of cancer cells.  We continue the anti-pneumonia med on the weekends though - we will always take that during our three years of chemo.  Thank you for your prayers - we are definitely lifted!!  Time to read one of our favorite books - I am being beckoned.  G'nite!

Sunday, September 18, 2011

09/18/11 September is Childhood Cancer Awareness Month

My friend, Jill, sent me a link I have to share.  Please pay special attention to 3:57 and on.  I am not trying to convince you to listen to country music (although it is highly recommended).  This is just SO much of what we are experiencing.  By the way, did you know September is Childhood Cancer Awareness month?  Heard it on the radio - Ironic!  As I was saying... Sheryl Crow: "When you're diagnosed with cancer, everyone around you is diagnosed as well."  Another speaker in the video: "You know people love you in your life, but you don't know how much until you get sick." God and angels right here with us.  I hope I can pass the same love and support that we're getting to someone else.  I am also thinking it would be fun to do the lanterns on the beach :)    I dare you not to get teary-eyed!

It reminds me of my motto the last few days: Earth is training ground for heaven.

In this training ground, we gather of experiences, both easy and difficult, on a daily basis. We learn from these experiences, and ultimately make better, sounder, judgments on how to deal with life in the future.  I daresay, the ultimate thing we acquire in this training ground is love. It is the one aspect of man that makes us most like God – or at least we have the ability to love like He does.   Jesus calls us to in John 13:34 A new commandment I give to you, that you love one another; as I have loved you, that you also love one another. 1 Corinthians 2:9 also comes to mind, No eye has ever seen, no ear has ever heard, nor has it entered the heart of Man, the good things the Lord has prepared for those who love Him. In our heart of hearts we desire this love that will be perfect in heaven.  And there is only one way to get it - through Jesus: I am the way, the truth, and the life. No one comes to the Father except through Me. Got Jesus?

09/16/11 E-e-echo

Last night, Adam had a sleepover at Grandpa & Grandma's house tonight.  He packed up his Spongebob backpack with pj's, blankie, ruffie, play clothes, and my "Diner, Drive-In, and Dives" cookbook.  Yes, he is looking forward to cooking with Grandma.  He picked out steak tacos for dinner and walnut pancakes for breakfast.  He is a boy who knows what he wants.  He enjoys spending time with his grandparents and feels extra special that he gets to stay the night.  It's not like he doesn't see them every day of his life anyway! But really, can you ever have too much of grandparents?  I think not!

Today I got to see the “echo” of my son’s heart.  An echo (echocardiogram) is like an ultrasound of the heart.  The purpose is to get a baseline of Adam’s ticker so they can monitor for any unwanted side effects during the next round of chemo we go through (in October).   The echo shows these things: a measure the size of the heart chambers, pumping function, valve function, circulation, and fluid in the pericardium (the sac that surrounds the heart).   Of course, the echo set off a realization I need to write about.

As I was watching the sonogrammer (technically an “echocardiographer” – one of the few healthcare jobs that is growing due to our aging population and prevalence of heart disease), I felt like I was watching Adam grow up.  Now, let me preface… He is my flesh and blood.  When he is in pain, I am in pain.  If there were any trades in life, I would trade his disease for my health.  But as I watched his heart pump, I realized that he is functioning on his own.  His own independent body and organs, working in harmony, fighting to be well.  While we are his advocate, recipient of all medical information and decisions, it is Adam who is doing all the hard work.  I have been distracted on my own “hard” work.  How hard it is to go to work, clean the house, put food on the table, care for two kids, and then take care of a child with special needs.  But, hello!  I LOVE my jobs.  I love being a mom, wife, friend, etc. I love to teach. I love where we live.  I also love to cook.  I even get to play softball on Sunday nights.  I am doing what I LOVE to do – and OF COURSE daily challenges come up.  That’s life.  Adam, on the other hand is doing all the fighting.  His body is fighting to be well.  Adam is fighting to do the things he loves to do, realizing he is different than kids his age, and trying to learn a new normal. 
On Thursday I was feeling really defeated.  I had a long day at school, Rachel was desperate for attention from Adam (good or bad attention – she doesn’t discriminate), and I picked up my car from the shop just to find out it was in worse condition than when it went in.  The final straw was when I found out that I had been giving Adam the wrong dose of medicine for the last 5 days.  I wasn’t giving him enough.  I don’t know when exactly my brain decided to start giving him 1.75 instead of 2.25 of his pills, but it happened.  I am more greatful that my brain threw up the red flags and I had the urge that something was not right.  And the rush of “failure” swept in.  I thought I was at least composed enough to call the doctor, but the hospital receptionist was pretty harsh when I asked to speak to someone in oncology.  She said, “well, they’ve all gone home, do I need to page the doctor?”  Well, um, I guess I don’t know.  So she transfers me to the advice nurse.  Yes, the general, my kid has a runny nose, advice nurse.  So, I called back and demanded the doctor.  Unfortunately, by the time the doctor came on the line, I was in an uncontrollable fit of tears.  I am pretty sure I asked her if she was a therapist as well.  She of course said, no, and did not think my “joke” was very funny (she doesn’t know me well enough to know that’s as funny as my jokes get).  But as an un-confrontational person who just had to tell a service manager that he is responsible for letting me drive my kids in a car that sounds like it is going to blow up and is therefore responsible for fixing it, and then go through a receptionist with a pitchfork up her (you know what) just to get a doctor on the line, I was spent.  Luckily though, the world is not ending, and I haven’t failed completely.  Adam will be ok, and I am probably a stronger person from the whole situation… somehow…

Adam also had some more chemo today intravenously.  It is really non-invasive with the metaport.  He might feel some pressure, but it takes like 30 seconds to do.  The waiting is actually the hard part.  We have to check in with the doctor, which takes a while, especially because I always have a ton of questions.  Today we met our official doctor.  Apparently, our pediatrician has worked with her and their sons played baseball together.  I am sure Dr. Ross must have arranged for this, right?  Because our doctor team kicks butt.  Praise the Lord for working that out!  She also tells us that this behavior thing and crazy eating thing will be over in about two weeks.  

On that note, here is our latest list of new recipes: banana bread, macaroni and cheese, philly-steak inspired hot links, homemade French bread, steak tacos, walnut pancakes, blueberry sauce, strawberry cookies,  and 50-50 bar milkshakes.  While Adam will probably lose the weight next month (because he starts a chemo that is an appetite suppressant and may make him nauseous), the rest of us are going to be 20 pounds heavier and, well, screwed.  At least it’s been fun!
So, I have posted a couple pics of Adam right now.  Think, chipmunk storing up for winter.  Sooo cute!  I was trying to get him to smile, you can see he was trying really hard not to.  I finally tickled it out of him (and bribed him with popcorn).

Monday, September 12, 2011

09/12/11 Re-Mission

It's official!  Adam is in remission.  This means his chemo therapy program is working.  It is great news that his body is accepting treatment and there are no harmful side effects at this point.  And the cancer is gone!  That means the next 3 years will be focused on keeping it gone.  This is the easy way we were praying for.  Praise God!

Sunday, September 11, 2011

09/11/11 Divine Intervention

Praise the Lord for His divine intervention today.  I have been avoiding or rather missing reality.  

"We are fine."  "Adam is doing great, he is like normal."  Have you heard me say these things?  I have been wanting so badly to be normal, for Adam not to be different - just a "normal" kid.  Because how can a kid enjoy life, be confident, and have friends if he is not like everyone else his own age?  I also want sameness.  It is like this: I am going down a paved, straight, road and anything that comes into contact with us has to fit in this pre-existing, known road.  However, this road could be curving.  Our road can be totally different. There is a chance for us to live lives that make a difference for God's kingdom here on earth.  

So, typically all four year old boys like cars or superheros or legos, right?  Stereotypical boy-stuff.  They are also active, hands-on, busybodies.  But what makes boys "normal?"  Why would I want my kid to be normal?  Normal is defined "conforming to the standard." Well, let's look at the standard around us here on earth.  Is that really what I want my kid conforming to - worldly desires, empty promises, materialism, and instant gratification of "normal" American life?   The world tells us that everything you get is a response to what you do: I pay $40, I get a pair of shoes.  Cancer doesn't work that way.  It is not achieved, it is not granted, it is not chosen, it is not inherited, it is not contagious.  I am sure there will be some connections made at some point in medical history, but regardless of where it came from, Adam is in the unique. He IS different.  Not only will he have seen miracles and God's amazing hand at such a young age, but he will be able to reason and relate to people in a way very few others will.  These things that make him not normal are things that make him extraordinary.  Rachel is also extraordinary.  She will have a compassion as his sister for people the rest of her life. Remember Psalm 139?

If I am unwilling to accept the ginormous change in our lives as permanent, I would be missing out on the greater purpose of God's will in our life.  Adam may be temporarily weak because of his immune system and susceptible to infections, but he is permanently a boy who has/had cancer.  I can shelter and coddle or  show him how this is something that makes him unique and it is good!  It has been difficult explaining big concepts (like cancer) to a four year old.  My approach thus far has been something like, You are fine.  Everything is normal except you need to take this medication.  Or everything is ok, but you can't go to Sunday School for a little while.  This is not helping Adam!  He knows something is not the same.  Also, it is selling us ALL short.  In this type of mindset we will miss the blessings God is offering - let's curve with the road.  Adam needs to learn how to be Adam - how to protect himself, how to use his God-given strengths, and how what is going on with him is amazing! Ten to twenty years ago, he may not have been healed.  Now, every pill, injection, and poke is giving him super-hero powers to fight the blasts in his body.  

All of this is because I realized today that I do not want to be normal.  I met an amazing woman that God placed in our life to bring this message today.  Remember, I prayed (also Psalm 139), Search me, God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting. When God calls us, He calls us to a different, simpler way of living. Putting his kingdom first (not to mention living in darkness and striving for normal is completely miserable) so that we can join the eternal family of God that has already gone ahead to glory!  Consider us called!