Wednesday, August 31, 2011

08/31/11 Adam Unplugged

Haha!  I’m giddy.  They have taken Adam off of another one of his meds because his body is responding well.  This was a med that counteracted a side effect.  No side effect is a great sign. Then, tonight we found out that if during the day Adam drinks 12 of the little juice boxes that are stocked in the mini fridge, he doesn’t need his IV fluids.  What?!?!  Unfortunately, it is 8 pm and we are three short.  Will that stop us? Oh, no.  We need to pound some apple juice, pronto!  It’s no problem for Adam.  Those juice boxes are child’s play in his book anyway.  So, even greater news, he’s off the IV.  He’s free!!  Another great sign that he will function ok outside of the hospital.
Not that Children's hospital is not amazing.  It is like Club Med!  You would have to pay top dollar in a fancy hotel for our view.  We can see the Bay Bridge, Golden Gate, and Mill Valley – just out of our one window. Adam likes when the BART goes by (like, every 15-20 min)!  Plus, we have dining services which provide a ton of great food options.  Tonight he ordered cheese pizza, but changed his mind when it got to us.  So, we ordered a grilled cheese instead.  Room service is awesome!  That will probably be the biggest disappointment when we get home.  We have in our (master bedroom-sized) room a Playstation 2, and Adam is loving the Cars 2 racing game.  Not to mention the plethora of toys!  From Nerf guns to remote control car and helicopter, coloring, reading, legos, board games, transformers, Leapster & Ipad games… He is in good shape.  Did I mention THANK YOU to our friends for all the goodies they have brought for him and Rachel?!?!? Next door is a playroom with arts and craft supplies, children’s library (including DVD and video games), and other toys and board games.  There is a lot he can do to stay entertained.  It is difficult to keep him off the Ipad though.  He is becoming an Angry Birds master!
So, should be pretty quiet here for a couple days.  Next big day is Friday.  Adam has another spinal injection, and they will draw some bone marrow at the same time.  The draw will tell us details about how the chemo is working.  Also, we should know by then how he will function in regards to fluid and food intake, side effects, etc.  Basically, we should know by Friday evening whether we are going home this weekend or not!  Will keep you posted…

Awesome visitors today: The Monroes, Grandma, Uncle Jason, Vienna, Rox, Troy, Uncle Brian, and Auntie Jen.

08/30/11 Ugh

Not so good today. If I could sum it up, I would use the word “irritable.” It is to be expected, irritability is one of the side effects of taking steroids.  I guess I didn’t know what to expect because Adam’s personality is definitely the opposite of irritable (in normal circumstances).  Like Roxanne told me, we are learning a new “normal.” Right?  I definitely didn’t expect to be literally kicked out of bed to turn on the lights this morning.  And there was a minor freak out when some of his orange juice squirted on his shirt.  Ugh! Four years of manners training for him to be pushing me around and snappy.  Really?  He could at least say, “please” when he demands a straw in his water!
After rounds, I find out his hemoglobin is low which will cause him to be tired and irritable.  Maybe even headache-y.  Ok, I should have known better.  Irritability is as irritability does.  Maybe the fact that we are in the first week of chemo, I should be a little more open minded in Adam’s behaviors?  Oops.  But the good news is, everything is working!  Everything should be low after all the medications he is taking.  We are going to start weaning off of the IV fluids and his organs are showing no side effects, so we are taking away one of the meds.  Woohoo!       
I am off to Parent-Teacher night this afternoon, but I hear we might meet with a discharge nurse!!  Hopefully we can chalk it up as a miracle and bust out of this joint.  Will keep you posted.
Ok, checking back in… Just got our first print out of Adam’s labs (thank you Nurse Lisa)! And my first mathematical formula of the (school) year.  It looks like this: (segs + bands)(WBC x 10) = ANC.  ANC tells us the level of Adam's immune system is at and how susceptible he is to germs/disease/etc.  Now we’re talking in a language I can speak! So, his white blood cells are low (check!), red blood cells low and needing a transfusion (check!), and platelets are low (check!).  These are all great because it means the chemo is working!  Chemo doesn't play favorites to the bad cells.  It just kills everything in sight.  The other good news is we haven’t seen any terrible side effects!  His immune system is at a low-susceptible level, but we are in the super protected iso unit, so the air is filtered, the soap is powerful, we’re all good.  No runny noses in the unit, though, that would be bad.  Still on track to go home on Sat!

08/29/11 PEG Day

I was searching online about leukemia and found an article in the NY Times about ALL. All the references about diagnosis and treatment were from something called A.D.A.M. I wouldn’t make this up!  Nor EVER reference the NY Times as a reliable, unbiased source of news unless it was absolutely necessary!!  A.D.A.M. stands for Active Directory Application Mode.  It’s an internal computer processing part of some sort – way out of my normal word processing and internet browsing capabilities.  Why they provide medical research is still unknown, but kind of ironic, if I do say so myself.  Link here (maybe you can interpret):
Well, anyways, today’s big event was the double shot in the thigh (“pegs”).  Two of the biggest needles I have ever seen simultaneously shot into each of the tiniest thighs possible, at the same time. Was NOT looking forward to this!  Can’t we wait until Friday when they put him under?  Apparently not.   There is a team of “Child Life Specialists” who are basically like teachers or playmates for the patients.  They explain things in kid-friendly terms and will do medical play or arts and crafts to help kid express their fears or anger while undergoing treatment.  She was great!  She played doctor and let Adam use some of the wipes and cleaning things along with official doctor tools like a stethoscope and blood pressure pumper (real official, huh? I’m learning from her too!)  Unfortunately, when it came to the needles, nothing could distract him.  Not the TV, remote controlled helicopter, Cars and Toy Story view finder, nothing!  He was going to watch and it was not pretty.  I can’t blame him though.  I like to hear exactly what is going to happen, how much it is going to hurt, and watch the process.  He is very much like that, but he proceeded to wrap his blankie around his body and refuse access to his legs.  The last time Adam was wrapped in his blankie, he was 3 mo old when Auntie Jill gave it to him.  A precious little lamb, born to be a professional baseball player.  If that doesn’t work out, West Point was Plan B.  Still in the running, but now thinking Stanford is a little closer.
Well, we survived.  He was scared, but toughed it out.  My little trooper.  Great Grandpa and Grandma Tina were here, so that helped forget about it quick. Pastor Don and Lea came to pray with us and deliver some books before their super cool sabbatical. Heaven is for Real, highly recommended.  Adam got a Cars book, of course! Later we saw Grandma and Great Grandma.  They brought dinner.  Josh and my awesome Bible study-mates, Daniel and Amber, arranged dinner for us.  Possibly ALL week!  They are amazing.  Apparently Amber was diagnosed with cancer at 11.  I get her story soon.  Amazing!  Of course the visit Adam was looking forward to was his cousins: Uncle Jason, Aunt Karina, Vienna, Andrew, and Savannah.  Thank you also to Nathaniel, Wendy, and Caleb for visiting too.  Love you all very much and eternally grateful for all the prayers and support.

08/28/11 God is Good

“The Lord is my shepherd” “God is healer” “So do not fear…for I am your God”(Isaiah 41:10) “and God will meet all your needs” (Phil 4:19)  These are the words of God spoken from our friends.  We have the most amazing army

in Christ.  Have you ever seen the troops band together?? If you do not believe in the supernatural, you must be out of your mind.  Our God is living, visible, and mighty. 
So, I was reading this book I need to read for my teaching philosophy paper and it was written like 100 years ago and the words aren’t making sense, but I keep going, and I found a line to sum up the source of my strength. Faith to move mountains?  You betcha.  Here goes (I hope you find strength today):
"let us remember that God makes no mistakes in emphasis; as we go on to struggle with some hard problems, let us do so with zealous regard for the truth, realizing in deep humility that we may indeed fail to apprehend it in all it's sacred perfection, but trusting also that the God of all truth will show us the way to His greater glory."
If I were to pick a life verse, I would pick Phil 3:13b: “Forgetting what is behind and straining toward what is ahead, 14 I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.” But doesn’t it sometimes sound really good coming from a human novelist?  Praises to God for the wisdom I need to press on.

Let’s talk about visitors.  I love you all, more than I am able to express.  I just hope you can feel it and see the positive energy that we have because of everyone’s prayers. But here is our awesome list of troops who discharged to come spend time with us this weekend: Dale & Kathy, Al, Greg, Grandma & Grandpa, Uncle Greg, Great Grandma, Grandma Tina, Great  Grandpa, Auntie Jill, Jay, Roxanne, Troy, Papa Brent, Mike & Tham.  You are all our family and amazing people and we love you very much.

Let’s talk about the force of nature praying for us.  Thank you Holmlunds for the goodies, thank you Wilhoits for more goodies, my awesome friends around the West/Southwest: Lauren, Megan, Angela, and Jill. Thank you everyone from church, school, work, army & Iraq (with my brother), friends, acquaintances, Facebook, Jenna in China, around the world and everywhere.  I said this before, but God is faithful, His amazing grace washes away all, He will reign, and may He be glorified in all we do. 

08/27/11 Iron Man

Still not good.  Oh wait, you want to hear about Adam.  Ok, humor me for a minute.  Rachel has dance class, so we’re getting ready with the tights and the leotard. I can’t find her shoes, she won’t eat her oatmeal, and BLAM-O I snapped, “Rachel SIT DOWN!” She looks up with her big, beautiful, blue doe eyes filling up with tears and says in her innocent and precious little voice, “mommy, you scare me.” Oh my word! I AM a horrible person!  Maybe Uncle Jason’s weekend camp of fun will be a good idea afterall.  At least she will be playing all weekend and having fun and not have to be stuck with Monster Mom!  So, I check myself, give her some love and we are off to practice “this is my right foot, this is my right foot, tap, tap, tap,” and "princess leaps over the pond" (those are technical dance terms for a 3 year old) J

So, back to Adam. He is in good spirits.  Color is back in his cheeks.  Aunt Karina brought him a remote control helicopter that he is shooting daddy and me with little helicopter pellets.  He is a perfectly strong 4 year old trooper.  He is cooperative when nurses come check his vitals (around the clock, every 4 hours), and not complaining about his new little button.  The button is the metaport.  He wasn’t happy when I told him about it.  I thought he would want to be like “Iron Man” and have a cool button like a superhero.  He doesn’t want to be Iron Man, see Iron Man, or read Iron Man now.  But he definitely does not want any more “pokes.” The poor kid had 5 pokes in the first 2 days of being here.  I can’t imagine doing that every day.  The first 3 were actually ok.  He wasn’t fazed by the pain, but he wasn’t happy with the nurse.  Who could blame him?  The 4th needed a little more convincing, and the 5th was WWIII.   The metaport will serve as an access for IV and blood draws whenever we are at the hospital or clinic for the next three years (as long as he doesn’t grow too much, it doesn’t need to be replaced).  He will eventually need weekly blood draws at Qwest (phlebotomist in Castro Valley), but well get to that bridge when we get there.

We also started Beads of Hope.  For every procedure, poke, medicine, therapy, etc (including just by being brave) Adam gets a bead that is color coordinated to each procedure.  For example, an IV is a black bead and a blood transfusion is a red bead.  We started his necklace today and he already has 14 beads!  One is extra special because he got to choose it and it is one of a kind.  It is his first courage bead.  He picked a blue, sparkly bead.

08/26/11 The Basic Diagnosis

“Not cool.”  Can you hear Gru from Despicable Me? (ok, most addicting movie ever, you must watch it!)  I did not enjoy seeing my son put under anesthesia the first time, and this second time is after I had the night shift (only a few hours of sleep at a time), Rachel is with us and super charged (think, every tube is a toy), and let’s just say 36 hrs is my max!  So, Adam is drunk again. He is getting his metatap in his chest to replace the IV and some chemo to the spine. This may sound harsh, unloving, cruel, and an awful thing to do as a mother, but “peace out.” We hear he’s out and everyting is good, but Josh is going alone to recovery to wait for him to wake up.  I have hit my wall. Rachel and I are outta here.
But let’s talk Leukemia for a minute.  What is going on in Adam’s little boy body?  Technically he has Acute Lymphocytic Leukemia.  Acute = Fast. I mentioned they were surprised we caught it so quick? This baby moves fast, and we were on top of it (that’s right Goliath, nice try though).  Lymphocytic = the type of cell involved. There are three main parts of blood, right? I’m by no means a biologist, so grain of salt here, but you got your basic red & white blood cells and your platelets. Adam’s were ALL low.  Now if they were all high, we’d be talking a different type of (fatal) leukemia.  Low is very treatable.  Leukemia = cancer of the blood and bone marrow. Ew, I said cancer.   Moment of silence, first time I am admitting my son has cancer. -------
Ok, recovered.  So, basically Adam has these little blast cells that are killing all the good cells.  So, we need to get rid of them.  We use a million things to do this, yes, chemo is one of them.  Radiation is not!  Marrow transplant, not needed!  Yeay for these things. So, the initial treatment is called “induction.” This will be the first month and during this time, we will kill these things off.  Poof! Be gone!  Therapies include big worded things like “doxorubicin,” “asparaginase,” “vincristine,” (these are intraveneous) “steroid,” “stool softener (?),” (by mouth), and “methotrexate,” “cytarabine” (by injection into the spinal fluid. The last two are done under anesthesia. The first three will be via a metaport put in his chest. Others will be fluids or pills ingested a few times daily. 
After the first month we continue treatments for three years to make sure the blasts stay away.  Common side effects include hair loss, irritability, ravenous appetite, jaw pain, constipation, nausea, and weak immune system (at times). Others we need to be a little worried about are increased blood pressure, pancreatitis, chills/hot flashes, mouth sores, and infections.  These are all completely treatable and will be closely monitored after our first round of therapies.  Unfortunately, if the second list appear, we’re here longer.  So, new prayer request: everything goes perfectly!
There are some long term things to watch for, but let’s not get ahead of ourselves. 95% cure rate.  Forever.  And considering Adam had relatively low % when he came in, I am bumping that to 97% J

08/25/11 Bring It On

It’s 6 am and I pop out of bed.  I can’t even do that on a school day! But “poor me” syndrome is totally over.  Not even a little bit.  We made a poor, cornered doctor admit that Adam has symptoms of Leukemia, but needs a bone marrow sample to know for sure.  So, I was out of bed, putting on my makeup, ready to conquer the world.  Literally, actually thinking, “I am going to find out my son has Leukemia today, and we are going to tackle this thing.” If those aren’t fighting words, I don’t know what are!  Got my baby girl dressed (technically goes like this: I picked out clothes for her to say, “no mommy, I want a dress!” and do it hers elf, but you know what I mean), and we were off.  Dropped her at grandma’s like a normal day and headed into the commuting traffic.  Surprisingly a quick drive, thinking everyone got out of my way when they saw me coming.  Worried about how my troops (Josh and Adam) slept through the blood transfusion he needed last night.  Knowing my school was praying for me at that very moment, I was on top of the world, ready to defeat Goliath!
Adam goes down to his procedure sometime before noon.  He is still pale, but got some color from the transfusion.  Not eating much, but totally engrossed in cartoons.  I am glad right now that we don’t have cable at home, so this will entertain him for awhile!
Fast forward… So, we’re down at the ER, and Adam is thinking it’s totally cool that he gets to ride on his bed in the elevator.  We get in pre-op and the nurse says she is going to give him something to calm him.  He seems pretty calm to me?  But I guess I have no choice and suddenly, my son is drunk.  Four years old and looking like he just drank a pint of whiskey.  I am feeling nauseous and have to leave the room.  Josh and I go to the cafeteria to share some breakfast.  Not the best meal in my life. 
As I am talking to my husband, I realize, I have the best friend and partner in the world.  His wisdom and strength have always been his attractive qualities, and they are in full force today.  I can manage any trial with him by my side.  A strand of three can never be broken!
Adam comes out, and is not happy to be waking up.  He is my little sleeper, just like mommy.  Three hours later, and he is finally willing to open his eyes.  He definitely needed the rest.  We are still waiting, and waiting for the official counseling session in which we seal the deal on our diagnosis.  Luckily, grandma and grandpa are here when the team comes in.  We step into their office (well, a conference room) and get down to details.

08/24/11 In the Beginning...

Happy 8th Wedding Anniversary!  I was planning something special…  Well, does actually cooking for once count?  Maybe let Josh pick the TV show instead of me stopping the world for “So You Think You Can Dance?”  I thought that was pretty special…
EERRRTTT! (think screeching tires) Here comes Clare and Erin, I just got done with 5th period and it's lunch time, day 2 of school.  I was on my way out the door, but they look harmless, they have Athletic PE forms for me to sign.  But Clare says that I need to call my husband ASAP, Mr. Hendren just sent them over.  Ummmm, ominous.  Ok.  But let me sign your forms first…
Calling Josh.  He's going to Children’s Hospital in Oakland. Ok.  Guess Adam needs a blood test.  Well, I only have one more class and then a prep, so I can leave at 2.  I’ll meet him over there.  Adam has been tired lately and super pale!  At Back to School Night he didn’t want the bounce house or face painting, just to sit on the ground by the basketball pole and watch the band.  Well, I couldn’t blame him, they rock!   But then on Tuesday grandma takes the kiddos to the park and he doesn’t want to play, just to be held.  Ok. Something is wrong here…
So, Dr. Ross sends Adam for a blood test.  Results are not good, and he needs to go to Children’s Hospital for another.  What is the worst it could be? That funny hip virus from the summer is probably still there. No worries. 
So, I am a little scared.  Ok, I was more on the verge of freak.  But I have a class to teach, and then I will make it over, right?  Nope!  Mr. Huemoeller sends me on my way and makes me feel like a crazy person for even thinking I would stay another minute! Not before the ultimate calmer in the world (Mrs. Kidwell) joins us for a quick prayer so I can actually drive like a sane person to Oakland.
Apparently we are going to be residents.  Funny thing, I thought we were checking in with the coolest nurse in the hospital.  She says there are some exceptions that can be made in her wing and so forth.  Come to find out, we’re on the floor where kids stay awhile… Oh, that’s why…
So, Josh and I decide to trade off (only one parent can stay per night).  We don’t know what’s wrong, but it must be something serious, and we need to plan to stay for a few days.  He is staying tonight, I am going home.  I need to be with my baby girl anyway.  She probably doesn’t even know anything is wrong, and I’m not going to that empty house alone! 
And as I turn onto Martin Luther King Jr. Blvd, the tornado of emotions erupts.  I called Jill because I needed someone to hear whether I got home safely or not, but I really verbalized all my immediate thoughts at that time.  She could probably tell you better but it went something like this (all in one breath, of course): “There is something wrong with my son! What did I do wrong? Why my perfectly calm, cautious, easy going, innocent angel baby? Did I not take care of the gift God gave me? Is there something wrong with me that I passed on?  Oh my God, please help me! It’s not fair!”  Imagine getting that phone call.  Sorry Jill.