10/23/11 Disney on Ice

Adam has been feeling well and blood counts are near normal, so we took the kids to Disney on Ice "Treasure Trove" with the Wilhoits on Sunday.  We had bought the tickets over the summer, so I am glad we were able to go.  It was a really good show, actually.  Josh complained about the voice over, of course, but how many people can sound like Mickey Mouse and skate?  It made us realize also how much of a blessing it is to do fun things like this.  Just because you bought the tickets doesn't mean you get to go!  You have to have the transportation and the health.  Luckily, we have the health on our side right now!  The kids got to dress up too (well, the kids who wanted to. Not over Adam's dead body will he put on a costume - unless a glow necklace counts?).  Check out Rachel's shoes - she was very proud!

Makena and Rachel

So, wanted to attach a couple pics of the good times.  Don't let Adam's expression fool you.  He loved the show.  Did not love the picture taking, as usual :)

10/22/11 Lucky Number Three

Adam's clinic yesterday was the beginning of Phase Three.  Doctors continue to report good news.  Phase three is called "interim maintenance" (maintenance is the phase Adam will be in after March for the rest of his therapy, and the time where life goes back to "normal."  You know, like tee ball, eating out, and Sunday School :).  Therefore, it should be another easy month!  He no longer needs to take chemo at home.  The only pills are the Bacterim which are only on the weekends to prevent pneumonia.  His injection yesterday was through the metaport, so no more lumbar punctures for a couple months!  Very relieved to get a break from that.  And clinic appts went from every 7 days to every 10.  So, all around, the load is lightening until December.  Unfortunately, we go back to intensification right around Christmastime, but we'll worry about that when we get there (Matt 6, once again).

A little worried about flu season approaching.  Josh has already gotten his flu shot.  Rachel and I get ours in a week.  As I type, we are at cousin Andrew's 5th birthday party!  Happy "Cinco de Cumpleanos" to my nephew, Andrew (I made that one up)...  I am concerned about the finger food, popcorn maker, and all the kids sweating in the bouncer, but he is happy, so we'll wash hands 100 times today, and hope for the best!  Kids at his age self regulate.  I even found Rachel, queen of the chaos, in the other room laying on the carpet in the fetal position because she needed a rest.  Adam has created a "angry birds" game out of blocks, so we have that ready if he needs a break too :)  In the meantime, Papi brought homemade guac, beans, and rice.  It is officially a party!  And life is good...

It's been a busy couple days with Uncle Jason's college friends in town from Maryland.  They have two boys, 7 and 4, and all the kids played together for almost 48 hours straight!  And I'm not talking video games and movies. Tag, rollercoaster, pirates, bike riding, ball games, you name it!  It was so fun to watch.  And we always have a great time when Steven and Allison are here :)  Not to mention the weather...  You can never convince me that October is warmer than June, but it always seems to be the case!  80 degrees today!  It was 65 degrees at Rachel's "waterslide" birthday in mid June.  Praise God for the sunshine.  I really think the activity and being outdoors is helping Adam rebound.  Party on!  

 For some reason, it is easier to find time to write when life is tough than when times are good.  Adam is good.  We are good.  But here is an update of our progress the last two weeks. 

Two Fridays ago was Adam's second clinic in Phase 2.  He reports to the clinic to get his metaport accessed so the anesthesiologist can administer the "sleepy milk."  This is a narcotic that basically knocks Adam out completely.  They do this because they have to administer an injection of  chemo in the spinal fluid.  Fridays usually take at minimum four hours.  One hour is in the clinic, one hour waiting for surgery, 40 min to check in for surgery, 20 min for the actual procedure, and one hour in which Adam has to lie down after surgery while the anesthesia wears off.  This Friday, though, he needed a blood transfusion because his platelets were down at 7.0.  That took about 4 hours, but Adam slept most of the time.  His energy was totally zapped from losing the red blood cells.  Nothing concerning though - just part of the process.

It's funny how indifferent we are becoming to the chemo already.  We are down to the one pill a day before he goes to bed.  I finally set an alarm on my phone because we never remember!  Then, right before we go to bed, "did you give Adam his medicine?" "no, didn't you?"  Crap.  So, we have to wake him up 2+ hours into his slumber to swallow a horse pill.  We use the alarm now. 

Last Friday was the same drill.  Check in, blood pressure, temperature, weight.  Chatted about the disappointment in the announcement of iPhone 4s instead of the 5g (what is "s" anyway?).  Dr. Beach comes to check in.  Nothing really to discuss because we're just in the routine.  She was pleased that the last bone marrow aspirate they did showed absolutely no cancer cells.  We kind of already knew that, but I will listed to that again and again - it's nice to hear.  Then nurse Courtney comes to access the line.  We are rushed upstairs because our appt is in 5 minutes, but I know better than to expect an in and out kind of morning.  We wait in the 2x2 room for another hour while a nurse checks us in, another nurse confirms we know why we are there and what the procedure is, the anesthesiologist checks in, and finally, we see the surgeon.  The worst, I mean WORST part is having to stand with Adam while he goes to sleep.  I end up in tears every time.  I hate seeing the medication take control of his body like that.  If at any point in this whole process Adam has looked weak and helpless, it is when he is injected with that stuff.  Probably because he goes totally asleep instantly.  You hear his pulse on the monitor at a normal rate and then at a resting rate in seconds.  I am trying to think, "peaceful" but all I can think is "intoxicated."  Ugh.  Again, I only have time to get a cup of coffee and open my book before I am called back to the recovery area.  There is some chatting with the nurse monitoring Adam, but this is the longest hour of the day - waiting for Adam to wake up.  But then again, you want him to sleep as long as possible because he has to lie there for at least an hour, and it is extremely difficult to entertain a kid who is lying down, basically still for that long.  We always make it though.  Clinic - out.

So other than the nightly pill and the Friday clinics, Adam is acting like his usual self.  He has this monkey thing going on in the morning when he wakes up.  The routine is to come into our bedroom and lay in our bed until 7 when he can ask for milk.  So, he is up at 6:30 (pretty typical) oooohing and jumping like a monkey.  In his high pitched voice, he asks for some milk, and the whole morning is filled with his hilarious, kind of hysteric, antics.  Like covering his face with a blanket and pulling it off to reveal some crazy face he is making.  Or jumping on all fours on the bed and panting like a dog.  He is just super silly, and kind of random, and it sounds really weird now that I am repeating it.  Guess you had to be there?  While his moods are good and energy is non-stop, we are still waiting for his features to go back to normal.  He is still pretty puffy.  It will happen.  I was comparing pics tonight.  Here is a before and after.

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. 

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" (www.marrow.org).  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!

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!

Click here:  I'm Gonna Love You Through It

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).