9/9/11 Re-----

Re-Do.
We have nothing to worry about.  That is if you are full of patience and perfectly content in the unknown.  ³³"But seek first his kingdom and his righteousness, and all these things will be given to you as well. ³⁴ Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Thanks Matt, ol' buddy ol' pal.  Guess God had another plan for Adam's blood counts being revealed because we have to wait until Monday.

He was a trooper - has been from the start.  He got his chemo via metaport at 9:30 and headed up to surgery on the 3rd floor.  However, he waited there for 2 hours before they actually took him in.  Some delays, guess that's not normal operation at the clinic.  However, the first delay was they couldn't find his doctor.  That seems a little strange.  The other two delays were due to complications with other surgeries.  Hopefully there won't be many more times of fasting all day and then waiting in a confined 6x3 room for 2+ hours.  Since Adam's procedure is now so late in the day, we won't be able to hear anything until the next day.  Since the next day is a weekend, we have to wait until Monday.  Bummer, drag.  I know he is doing fine, and if there was a problem, we would already know.  So, I think I got myself a little too excited to hear the word, "remisison." It is a three year process.  Three days is not a big deal. "Trust in the Lord with all your heart, lean not on your own understanding." Had I asked Proverbs what to do today, I might not have been so disappointed this afternoon.  Life is so much simpler when you chalk it up to God and rest your burdens on Him.

BTW, I am happy to report that Adam does not really want a new house.  That was just his way of saying he is bored.  I should have known - a routine kid wants a schedule.  So, starting tomorrow, we're going to schedule.  He can watch his cartoons until breakfast at 8, reading until 8:30, get dressed and ready until 9, painting and art until 10:00, outside until 12.  Then lunch and nap... That's as far as I got... But hopefully he won't be "bored" all day.  It's not like the kid doesn't have enough toys.  He just needs some direction in his life.  Haha.  Sounds like I am talking about a teenager!  Hoping to post a picture tomorrow, he's looking a little puffy.  Only gained 1 pound though.  Just puffy.

Food!  I have to tell you this story.  His favorite show is Iron Chef now.  Then today there is a marathon running of Diners, Drive-ins, and Dives (which is more like Josh and my hobby than a tv show), and Adam is hooked!  Can you imagine Adam, the next Guy Fieri?  So, he comes to me around dinner time and says, "Mommy, I have a good idea.  We should get one of those cooking books and turn the pages and find something and cook it!"  He was so excited about it!  Of course, this is the time I can't find Rachel Ray, so I pull out an Italian cook book I have, and hope he doesn't choose something like cioppino or even pizza would have been pretty much impossible with what I have on hand.  He is reading this book, carefully skimming the pages and looking at the pictures.  He decides we should make polenta.  Ok... Can do. So, we make chicken with polenta and peas.  I swear, he is telling me how much to put of each thing. He is starting to measure in addition to stirring and pouring?  It is awesome!  Unfortunately, he didn't like polenta.  I told him that sometimes even chefs try new things they don't like.  (He did, of course, proceed to eat the rest of the peas in the freezer! How do you say "no" to more peas?)  You would think I could teach him to pour his own cereal in the morning so I can sleep in.  Hmmm...

P.S. False alarm about Rachel contaminating the house.  I think we avoided a bug afterall.  Maybe allergies?  Maybe a miracle.

09/07/11 Germs, Germs, Everywhere

I don't know where to start.  It's been a few days.  A few busy, chaotic, days.  I am writing for therapy tonight. Bare with me.  A collection of jumbled thoughts.  Here we go...

So, we have been home from the hospital for 4 days now.  Our biggest nemesis is the germs.  Good germs, bad germs, obvious germs, sneaky germs.  I am trying not to let the germs consume me, but I went back to work, so, they do.  I work with 60 teenagers, 30 adults, and even more parents.  This means I come into contact with at least 100 people every day!  And to not bring home germs that will put my son in the hospital, is a little overwhelming.  Lucky for me, I have been studying Matthew 6 still.  It says,    ²⁴ “No one can serve two masters. Either you will hate the one and love the other, or you will be devoted to the one and despise the other."  Verse 25 refers specifically to money, however, this concept applies to my situation.  I am a servant to the germs.  I hate them, but I am letting them consume me.  I have got to step away from the germs. 

And then, guess what, we have a "bug" in the house.  Rachel is sick.  How, where, when she got this cold, I have no idea.  It could have been at dance class, the Scottish games, church, or just picked up in the normal day routine.  Have I mentioned the kids share a room?  Yes, as of this summer, we thought it a brilliant idea to share the big bedroom, get some bunk beds, go crazy with some paint, and wa-la!  Well, that means they share a closet, toys, and GERMS!  Ugh.  What do we do?  Do I wash her sheets every day until its gone?  Make her wear mittens?  Confine her in isolation until it's gone?  These are obviously not realistic options.  What can I do? What would you do? All I can think of is pray.  And I act like that is not enough.  Where else have we gotten the strength to tackle this thing?  How else would we be able to see the light and positives and blessings we have?  It is from the prayer and support, and that IS all we need.

Adam had his first blood draw at the phlebotomist today.  He has to do this every Wed for this month.  He did not cry, but, of course, wasn't happy.  Josh took him, so this is not first-hand account.  I hear, though, they got Egg McMuffins afterwards, so all was well.   Oh yeah, let's talk about food for a minute.  My son can all of a sudden eat 4 meals, 8 snacks, and basically consume as much food as a sumo wrestler, if we allow it.  And he doesn't want fruit and vegetables.  He wants cheez-its, popcorn, potato chips, wheat thins, toast, garlic bread, (you see my point)?  Cheese and carbs, cheese and carbs.  I thought the meds were going to be expensive... If he doesn't eat enough, he gets a tummy ache. If he eats too much he will look like a sumo wrestler!  This is from the steriods he is taking.  They have already made him look puffy.  He is now going for full-bodied linebacker status.

He is also behaving differently.  Not bad, just different.  Withdrawn, conscientious, fearful, touchy.  He has been observing a little more, and participating less.  The cousins were playing outside tonight, and he was sitting with me for a little while.  He decided Food Network was more appealing (I told you about the chef thing?). Hard to blame him - it is reality tv at its best!  But I was concerned he didn't want to play outside with everyone else.  Also, last night he tells me, "Mommy, I don't like this house anymore." My response, "but honey, this is the house God provided for us.  It's not easy to have a house."  He says, "Well, I think we need to check out some other houses."  Where did that come from?

Theory #1: He is upset and/or starting to feel angry about what is going on and the changes.  He feels different than everyone else, and if he moves to a new house, everything will go away.

Theory #2: He is recovering from the hospital.  Adam is a kid of routine.  From the time he was an infant, he needed structure and schedule.  He was hungry every four hours on the dot.  Even now, he wakes up at 6:30, has milk at 7, lunch at 11:30, nap at 12... etc.  The daily routine is important to him.  So, he just got back from a week and a half at the hospital that rocked his world and made a mockery of this routine.  So, he needs a few days to adjust and see that everything is really back to normal.  His routine is his security.  Which is why Josh and I went back to work so soon.  Get back in the routine that he knows. 

Then, I started to feel sorry again.  Sorry for him, sorry for me, sorry for everyone.  I just wanted to tell him that everything is ok and there is nothing for him to worry about - and that be all he needed.  But I don't understand what he is feeling emotionally or physically, except for info sheets and side effect reports and medical jargon that go on for days.  And wouldn't you know it, I only lasted about 15 minutes in my self-loathing.  Christine and Jennifer came over tonight to drop off some gifts for the kids.  Jennifer shared with me some pictures of her foster brother who was diagnosed with ALL at age 2.  He is now a tall, strong, kid, going to school, playing basketball and living a normal life.  And it hit me.  We are the lucky ones.  Mrs. Fellows shared with me after school on Tuesday, and this also encouraged me and showed me back to the path.  While Adam's disease may be temporarily routine- changing, the only life-altering it is going to do is for us spiritually.  Who knows how this experience is going to be a testimony for us in the future.  And I am lucky to see the daily working of God's hand through His people who have been calling, texting, facebooking, and even coming to see us. 

So, all we can do is take one day at a time.  I pray that Adam does not catch Rachel's cold.  I am also praying that he is in remission after this Friday's procedures.  I am sure he will be because he has been progressing really well, but just in case God doesn't know our preference, I am praying reminders to Him.

09/04/11 Haircut

Our message today at church was about change.  Don’t you love when it feels like the pastor prepared something for you personally?  God’s handiwork J  Jesus came to change humanity.  He came so that we can live abundantly.  If we are worried or anxious, then we have walked away from Him.  When something becomes such a focus to us, Jesus steps down from being king to compete with (enter distraction here).  Let’s leave Jesus where he belongs so He can be a tower of refuge.  And I will dwell in His house, not in my own. The only place I can be refreshed is by Him - not by researching the internet, not by sulking on the couch, not by focusing on work.  It is Jesus I am seeking today. 

So, to embrace the "change," we went for daddy and me haircuts!  We went down to Great Clips for the “Great Cut.”  Good bye hair, hello military mohawk.  Unfortunately, Adam is the only one not excited about it.  I am hoping it will grow on him.  Ew.  Bad choice of words.  I am hoping he will like it better in time (since there will be no hair growing for a very long time).  Very happy about Josh’s nappiness also being gone.  Did you know he has blonde curly locks?  If you haven’t seen him in a while, take my word for it.  Now he has a nice, clean, trimmed look.  No more white-boy trucker look.  Ok, maybe that was a little harsh?  Darn, I don’t have a picture of Josh, but here is Adam all cleaned up!

Also got to try out the new washer and dryer today.  Did I mention those fine appliances breaking last week?  Yes, wonderful timing.  We got them when we got married.  Funny thing, Josh’s Grandma’s microwave just broke.  Yes, the one she got when she was first married.  They just don’t make things like they used to.  As I type our refrigerator sounds like it is warming up for takeoff, so hoping that holds out awhile... Off to hug my honey.  He deserves it for putting up with me the last 24 hours!

09/03/11 Homeward Bound

I have a lot to share with you since we came home (Saturday).  It has been a busy 24 hours!

Yesterday morning we checked out early.  We had breakfast at 8:30, rounds at 10, and we were walking out the glass double doors at 10:30!  Adam clutching Ruffie and Blankie and wearing his new Spongebob backpack.  I was staggering with luggage, but that is another story.  It actually took some convincing for him to leave.  What was strange was every morning for the last several days, Adam would wake up a little down in the dumps saying he wanted to go home.  The day we actually get to go home, he wants to stay?  This is really a testament to all our wonderful friends who came to visit, bring toys, and really make the hospital feel like vacation.  No joke.  Thank you!

I convince Adam that playing with his own toys will be more fun than playing in the “5^th floor playroom.” He proudly sports his go-home gear and we are on our way!  While Adam never said he was excited to be leaving, he totally was.  We get in the car and he is chatting all the way home.  Things like, “look at the birds,” “the sun is coming out,” “look at all the cars on the road,” “mommy you’re driving fast,” “mommy don’t crash – I don’t think I would like to crash,” etc.  (Just to clarify, I wasn’t driving too fast, we were just on the freeway and he hasn’t been in a car for a week and a half)

We get home and he is in exploration mode.  There are balloons from the hospital and he asks, “mommy, was there a birthday party here?”  Of course not without you!  “Mommy! There’s a bird in the bird feeder!” He is in the living room, in the family room, in the kitchen, in the bedrooms, exploring everything like it is a brand new house!  All very cute.  He settled in his room playing with his cars.  I had to set up the racetrack, the pirate ship, get the Nerf pellets for his gun, and find his army men all in a matter of like 10 minutes!  Life is good.

But what Adam really wants… really, really wants… is to ride his bike.  Luckily, Grandpa is up for a bike ride.  After a cat nap, we head down to Grandpa’s house for a (cement only) bike ride.  Adam was a little tired afterwards, but it was nice to see him doing the things little boys should be doing.  My little man is back!!

On the other hand, there is some serious reality setting in.  We don’t have nurses 10 feet away whenever we have a question.  We have the big bag of medicines that need to be given.  And bacteria are like our new evil everywhere we go!  Bacteria are something I was aware of before, of course.  We are clean, but maybe not the weekly house cleaning, hourly hand washing, antibacterial lotion in the purse type that we are becoming.  We don’t think twice when we share food, share towels, share chapstick. There are many things we normally take for granted in which we exchange (harmless) germs and now have to be very aware of.  Not to mention, soil and dirt are places where bacteria thrive, and what is practically our entire landscaping?  We took the yard-covering junipers out from our front yard in anticipation of grass, it just hasn’t happened yet.    So, best thing I could think of? Agree to apply for Curb Appeal on HGTV.  But really, Adam can’t play in the front yard.  Breathing and injecting dirt are all bad right now.  And probably for the first year.  All we can do though is the best we know how.  Take all the precautions and apply new safety measures as best we can.  Adam is really his own worst enemy right now.  He is more likely to touch something and then touch his mouth than for me to cough on him.  At the same time, we don’t want to treat him like a cancer patient and live in a bubble.  A crazy balance, I am hoping practice makes perfect.  Or rather, we just get better at in time. 

So, as Josh said (in love, of course), I had a “burr in my butt” last night.  I really just wanted to be left alone.  And instead of asking for such, I gave attitude and dirty looks and who knows what else.  I was tired, cranky, and just not nice.  I am lucky to have such a loving, patient, and forgiving husband who was still speaking to me in the morning.  “Idle hands are the devil’s handiwork.” Or so LeAnne Rime’s mother says.  The first night of home sweet home was a stomping ground.  But all I can do is pick myself back up and try better tomorrow.

09/02/11 Post-Op

Surgery is over.  Adam is doing just ok this time.  It was a really long day without food or drink.  He also woke up earlier than last time.  You have to lie down for 30 minutes in recovery to prevent headache, so he had to stare at the celing, ravenously hungry, and there wasn't anything we could do to distract him.  Then, after 30 minutes he could sit up, but we had to wait another 30 minutes before we could go upstairs - mostly because it was the nurse's shift change.  Bad timing!  We survived.  So basically, the discomfort of the day has been draining and we are settling in to a quiet movie night (Robin Hood is his current favorite).

Now, on to the results.  We ARE going home!  We decided to wait until tomorrow morning becautse it was just easier that way,  but we are free and clear to go back to (an altered) normal life. As for the progress of the chemo...  I should start out by saying I was hoping for a "break the odds" type of result.  We wanted remission (cancer cells less than 5%).  Call me an over-achiever (or greedy, ifyou must), but we really had a 50-50 chance here.  What did happen is still great news.  His cancer cells decreased from 50% to 11%. 50 minus 11 is 39%, which is an 80% drop!  Also, still no fever, mouth sores, high blood pressure, constipation or any other concerning side effect.  So, we are making progress.

The next big day is next Friday.  He has to come back to the clinic for two things.  One is the vincristine (an intraveneous chemo treatment) and two is anothere lumbar puncture (LP) like we did today.  It will be another long day.  And not to get too far ahead of ourselves, but if I am being truthful, I have one other concern lingering.  If he is not in remission next week (<5% cancer cells in the blood), then we have to change prognosis to be more aggressive. This gives us a little more to worry about.  Now, I realize God works in His own time and not in our preferred time, but it is difficult when hearing doctors, medical terms, and percentages all day (especially days like today).

I am clinging onto Matthew 6 tonight. "So do not worry about tomorrow, for tomorrow will bring worries of its own. Today's trouble is enough for today." ( Matthew 6:34).  And there really isn't trouble today! In fact, we are on a pretty good path.  God is going to provide for our needs, maybe not all our wants, but everything that we need.  I also need to remember that He provides according to HIS riches in heaven - and not be distracted by wordly websites, doctors, and statistics.  I have faith in Him as our healer and provider, and am trying not to be so obsessed with the comfort of our own home... Although that was some pretty fantastic news :) Did you know Adam's name was almost Matthew? I have an orange hat with black writing "Matthew," child-sized if anyone is interested?  The book of Matthew was my go-to for a long time.  The parables spoke to me, and who can live without the Beatitudes?  You have to hear it taught by Pastor Matthew - a-maze-ing!  And appropriate, right? But as a name, it didn't fit for our boy. Adam though - "of the earth," seemed like a simple, masculine, fit.  Can't imagine it any other way! 

09/02/11 Technicalities

News will be coming this afternoon.  As long our lumbar puncture is actually at 1 pm as scheduled, I will be able to tell you Adam's reaction to his chemo this week and whether we are homeward-bound!  Probably around 6ish.  In the mean time, I have posted some technicalities.  Some you have heard, but more in a science report kind of way...

 

All About Chemo: I did something that I have been avoiding for the last 9 days... I googled.  If you know me well, you know my unhealthy reliance to google for answers.  I now know why I did not want to do this when Adam was first admitted.  Oh the gloom and doom.  If you do a google image search you can see what one of the little blast cells our doctors saw floating by in Adam's blood. Do not, however, I repeat, DO NOT scroll down.  You do not want to see that. I did you a favor and just posted a pic. The levels of toxic going into Adam's body right now is unbelievable.  He is getting what's called a combination chemotherapy - two or more drugs at a time (i.e. right now is the chemo and the steroid). Chemotherapy is a poison.  It literally kills cells by poisoning them.  Both the bad and the good.  Something interesting a nurse told me was that if Adam wets the bed I need to use gloves to clean it up (because that's where the toxins come out).  Adam has gotten his chemo in 4 different ways via intravenous (metaport), oral (pill form), intramuscular (pegs), and will go for inthrathecal (lumbar puncture) tomorrow while under anesthesia.

Side Effects: We are still waiting for some of the side effects (hair loss, tiredness, bleeding, bruising, problems in the mouth, and skin changes), but he was taken off a medication that counteracts organ damage (kidney, liver, and heart) because his blood levels showed no problems in these areas.  Still scary though.  The side effects we are seeing already are low immunity, nausea from different smells, loss of appetite, sore jaw, and taste changes.  I just can't believe that chemo is KILLING Adam's immune system, and he still LOOKS normal!   Does it get worse than this? It must!

What is Leukemia? A.L.L. is the most common cancer diagnosed in children and it peaks at ages 2-5 years. Causes are not officially known.  It is basically caused by a DNA defect in which the body produces these "blast" cells that kill off the good cells in the blood (three types of cells = red blood cells, white blood cells, and platelets).  Blood cells are made in the bone marrow by stem cells (uh oh, getting close to political debate here, jk), so in some cases stem cell transplants are needed (usually donated from a sibling). We are not that far along, so Rachel is in the clear. If a child's bone marrow is not able to make enough red blood cells to carry oxygen, the child may develop anemia, and feel very tired - here's what happened to Adam so we were able to catch it. But where did this come from?

Where did it come from? There is some research showing prenatal radiation exposure could be a cause of leukemia, but it goes on to say that radiation has to be at levels equal to Pearl Harbor after the Japanese attacked.  I definitely wasn't there.  I didn't do hardly anything I wasn't supposed to when pregnant.  Ok, I ate sushi ONCE with my sister, and had an occasional Diet Coke here and there. I haven't been to the doctor for anything outside the common cold or flu, not even a broken bone!  Websites are really trying to convince me that it is not genetic or inherited, but it is just hard to not try to find something you could have done. Even Venus Williams, who we can all agree is in amazing shape, was recently diagnosed with a random autoimmune deficiency.  Where does it come from? Only 2500 cases of childhood leukemia cases are diagnosed in the U.S. each year!  I was a little confused by this since I have already heard of two kids at our church and school with Leukemia.  What are the odds?  Well, it is more rampant in urban areas.  More people = more cases.  Easy logic, I guess. The survival rates for leukemia (all types) is 70%, but for ALL is 95%. Since we are a "standard risk" (as opposed to high risk) and have super genes inherited from the Italians and Scots, I am still going with 97%.

I think this would be a good time to chalk it up to those who donate time, money, and energy to the Leukemia and Lymphoma society.  My amazing friend, Megan runs with Team in Training every year, and she raises thousands of dollars.  Not even the 1/2 marathon - the WHOLE she-bang! I have heard from friends who have relatives, friends, co-workers, just a ton of through-the-grapevine relations to the society and contributions to the cause.  I never have felt so grateful for these things.  In 1960, my son would have a fatal case of cancer.  Since 1991, he has a chance to survive.  And even more recent (date unknown), we have hardly thought twice that he won't have a normal life.  Thank you’s all around!! 

09/01/11 Just Hanging Out

 So, let’s talk about Psalm 139. Pastor Don shared this with the church on Sunday because it is close to him.  Josh was so encouraged, he actually took notes for me! 

J  “Even if I make my bed in the depths, you are there.” I couldn’t sulk if I wanted to – we are not alone.  I also cannot be overcome by this disease.  Neither can Josh, Adam, nor Rachel.  “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.”  This experience will make us stronger, closer, and more faithful.  God knew our every step, every act, and every thought before they happened. Jeremiah 29:11 says, “’For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” He has woven us from the beginning. We are in his hands.  And He will mold, chisel, and lead us.  “Even the darkness will not be dark to you.” Even cancer is not darkness to us.  I will admit that I am glad we have the “good cancer.”  

 

Adam is watching the Magic School Bus – I am thinking maybe he will learn a little about how his body works.  Mornings are tough because he realizes that he wants to go home and be in daddy’s bed – watching TV and drinking milk like usual.  Milk is the one thing I have noticed he doesn’t like anymore.  Change in taste buds is a side effect of the steroid.  We’ve tried different %s and even chocolate, and still a no-go.  Trying Vanilla soy milk this morning.  

False alarm.  He wants to play here for a couple more days.  As long as I eat a goldfish-raisin sandwich with him.  His own creation!  Yum.  He has been saying he wants to be a chef when he grows up. Now daddy and he are planning to spend the day shooting Nerf pellets at the window.  The doctors were impressed with his aim (and I think wanted a super cool gun like that too)! 

News flash.  We're picking up Adam's meds tomorrow.  Still on track to go home Sat.  Oh for Adam to have a bath and his own bed!  So, I have to admit my shame.  We had to hire a maid to keep the house clean.  Mostly concerned about the dust. With working full time and now weekly clinic visits in our future, cleaning is going to be even more difficult.  I should be excited, right?  Still talking myself into it. 

 

I have another shot out.  Thank you Ennis' for another yummy dinner!  Adam ate a fair share himself.  He asked, "what is that yummy smell?!"  From a kid on chemo who is easily nauseous from food, this is a HUGE compliment!  Also thank you to Damaris, Arianne, and Sophie for coming after preschool, Great Grandma and Grandma coming with Rachel and Andrew, Papa Brent in between a crazy work schedule, mom’s cousin Lori who works in the incu, the Burkes and the cool Spongebob backpack & accessories, and some pretty cool teenagers.  A brave group of NCS champ baseball players came by with a signed baseball and team pic for Adam.  Adam served as their bat boy a couple times last season and thought he was pretty hot stuff in their dugout.  He was shy today, but was silly and goofy after they left showing that he was pretty happy to have the attention.  Also, my awesome softball girls came with a cars balloon and card signed by players.  Thank you for coming to hang out, even though we had to work it in shifts :)  We love you all very much!!