Sunday, January 29, 2012

01/29/12 - Home Administration

#1 is the scary bag the syringes came in
#2 is daddy doing the injections.

I found it to be a photo op, Adam did not.  He approved this post, however.  So, the routine goes like this:
1. Take the alcohol swab and swab around the tube for 15 seconds.
2. Next, do a saline flush with the first syringe, pulling back to (looking to pull some blood) to make sure the line is working. then, inject the chemo making sure nothing touches the syringe except the gloves and very slowly (little push, count to ten, little push, etc).
3. Then, another saline flush, but still slow, check again that the line is working to make sure everything went in and there is no leakage later.
4. Finally, inject a coagulant, clipping the line at the very end.

I am telling you, we are practically doctors in the Hendren household.  Day 1, check.  One more tomorrow plus we get to take out the needle.  Will keep ya posted!

I would also like to announce my serious intent at marathon running.  I began my interest last year thanks to my friend Megan, but the distance did not allow for much (needed) accountability.  At clinic on Friday I found that our fav nurse runs with a local Team in Training and invited me to come to one of their events.  Hmmm, maybe.  And then talked to my amazing friend Laurel today, and she is committed to 1/2 marathon in June - training Sat mornings already.  I was super motivated today and set out for a long run.  I felt like I could run all night! Yes, there was Gu involved, but I marked down 7 miles and considered going again.  I love the solitude.  Once you find a groove, there is no huffing or puffing, the leg cramps start when you've hit your ability distance, but the way your muscles, breathing, and movements are in rhythm, it is amazingly peaceful. I find my isolation when I run.  Sometimes I think about the upcoming softball season, sometimes I get lost in my "workout jams," and sometimes I argue and debate about the way God is working in our lives.  I play Devil's advocate, unfortunately.

I was seriously questioning recently how this could possibly a "planned," "everything works for good," "peace and joy" time.  How could He?  Why would He?  What would happen if?  I realized that the promises and psalms I rely on are legitimately on my heart, but I don't think I really believed them.  But God finds a way to isolate you during adversity - whether from people, physically, or just hitting you at an unexpected isolated moment, and it forces you to search and wrestle on your own.  Nobody else's philosophy - just my relationship with Him.  And, I am happy to report, He still wins.  Apparently, I internalize, observe, and wait for my insides to self destruct.  I haven't changed my mind, I still count my blessings everyday and see the opportunity to share God's glory in our lives, but in addition, I am starting to believe the reality of the scripture and truly find the peace that comes with trusting Him in every situation.  I got angry with Him, but He knew about my anger since August, it was just a matter of time before it caught up with me.  Luckily, that unconditional love thing is also true.  He is still good, we are still in His holy hands, and He is still the God of my life.  And here I am running, the one thing I have hated to do my whole life, and experiencing solitude (and, yes, isolation) while building confidence in my relationship with our Lord.  What a wonderful life.

01/29/12 - Finger Pretzels!

We came, we saw, we conquered in-patient visit.  Adam's counts were up on Thursday, so they admitted us Friday.  He and I went in at 10:30 Friday morning to the clinic to see Dr. Beach and get his port line accessed.  At 2 pm he went in for the LP.  He threw up again.  At 3:30 we had a room and headed over to 5 East in the main hospital.  5 East is not the same as 5 South.  If 5 South was the Ritz, 5 East was Motel 6.  But we had a great nurse, Tom, and a pretty smooth night.  We shared a room with Lily who had been there since she was 9 months old (now 3 1/2) for an in-operable tumor (undergoing chemo to treat).  She was a noisy roommate, but made me want to come back and visit her.  Can you imagine?  Poor baby!  We also met Ava in clinic who is 3 and was diagnosed with ALL two weeks ago.  Her family is from Nevada and was airlifted from their small town to Reno to Oakland.  I just remember how quickly we went to our pediatrician to the blood draw place and were admitted at Children's when Adam was diagnosed.  We didn't see it coming.  So, to be uprooted like that and "wake up" after the dust settles in Oakland, thousands of miles from home - family, friends, you name it - that would have been overwhelming!  Ava was shy, but looked like a little trooper.  I thought we would be able to hang out more after the LPs, but we didn't get to join them in 5 South like I thought.  It's kind of strange that I miss that place...

Anyways, Adam did very well, once again.  He had to take 6-TG.  This is a one-time (I think) chemo in pill form.  It is called an "antimetabolite."  Antimetabolites prevent cell division.  There are about 5 different types in the chemotherapy treatment (Adam has taken 2 others prior to this one) and each one interferes with different substances in the body.  For example, the Mexotrexate he was getting in clinic in Nov (and will be getting again in a couple weeks) was a folic acid antagonist.  The 6-TG is a purine antagonist.  The chemistry is kind of complicated, but the simple way I understand is that purines are part of the chemical structure of our DNA.  The danger of 6-TG is in the past kids' have developed liver problems.  It is important that a lot of fluids are ingested to wash the drug out of the body so it doesn't sit in the bladder.  The doctors had Adam on an IV for 18 hours and checked his urine (for toxins and blood).  Once the toxins were gone (and no blood showed up) we could go home.  Everything went as planned.  Well, medically speaking.  I had planned to have a big room with a view and sleep on the comfy bed with Adam.  Instead we had the door side of a closet-sized room and I "slept" on the chair.  But that's me being petty.

The other drug in this phase of chemo is Ara-C.  Ara-C is also an anti-metabolite, but is injected through the port.  Here's the fun part - Adam came home with his port still accessed so we can administer the injections at home.  Fun!  I was a little squeamish yesterday when I did the first one, but it's not bad.  The Ara-C is a Pyrimidine antagonist, and I don't really know the difference between purine and pyrimidine except in chemist terms "purine has two carbon-nitrogen rings and pyrimidine has one carbon-nitrogen ring."  Basically, we're dealing with Adam's chemical structure in his body and altering the cell formation to make sure no more cancer cells show up.  

So, Josh and I are happy that Adam is home and we can administer the Ara-C here.  Adam is not.  He would like to go back to the hospital.  He is self conscious about the port.  I wanted to take a picture of it accessed, but that is not going to happen yet (maybe next time, we have to do this again next weekend).  Instead, I have chose to share some of the things we did to entertain ourselves in the hospital.  

#1 - pretzel fingers.  Food is just more fun eaten off of fingers.

#2 - licorice straws.  Everything tastes better when drinking out of a licorice straw.  Except, maybe orange juice.  Adam liked water the best.  His lips are still red a day later!

So then we had some interesting, technical things I'd like to note.  First, our insurance made us get the Ara-c from a delivery truck.  It is a home delivery company, Crescent Healthcare in Hayward, that brings meds to you.  We were in the hospital, so we have this ominous cardboard box in our room.  I am thinking Amazon is amazing by hunting me down to deliver my latest order, but instead it is this box of chemo, saline, rubber gloves, and antiseptic wipes.  Just a different experience than going to the pharmacy.  

Also, I get to my car, which is parked for 30+ hours (10:30 Friday morning to 4:30 Saturday afternoon), and lovely to find a ticket.  What?  What police officer is wandering through the Children's Hospital parking garage looking for expired tags?  Officer Lopez was.  Ugh! First, I had no idea my tags were expired.  Usually, you get the reg in the mail, pay it, stickers come, stick them to the plate.  I will have to look into that.  Second, it is a parked car!  But I guess parents whose kids are sick have to follow the laws too.  I am just having a hard time understanding why that cop, in east Oakland, didn't have something better to do... Hmph.

The end.

Monday, January 23, 2012

01/23/12 - It's 1-23 Today!

Still a no-go, but at least the date is fun.  1-23.  Plus 1+2=3.  :)

Adam's counts weren't high enough yet, his ANC is only at 608 and needs to be at 1000.  It's been growing about 100 points per week.  This is not bad or good, it's just the process.  It could go up 500 points in one day - you never know.  They'll keep checking now every few days to see when he is ready for the next chemo. 

On a selfish note, I am thankful we can hold off a few days.  It is Spirit Week a fun, wacky, creative, and exhausting time at school, and it would have made me anxious and kinda sad not to be there.  Especially on hallway assembly day!  We are decorating our hallway to look like London. My favorite is the fog machine for "London Fog!"  Plus a few more days of normalcy is nice.  Now we're off to piano lessons.  Just plugging along until the next treatment!  Cheerio!

Saturday, January 21, 2012

01/21/12 - The Great Dine

2 and a half hours later...

So, what to do when you are stuck in a rut?  How about comfort food!  Well, I had to drop off some key items at school to get ready for Spirit Week next week, and on the way home we stopped at Trader Joe's to pick up something for dinner.  And what is better than snacks for dinner (except maybe breakfast for dinner, but the kids haven't gotten past cereal yet, so we're not quite there)!?  We feasted on brie, salami, bruschetta, apple slices, trail mix, and corn chowder, some "grape juice," and it was fabulous.  The kids loved picking what they wanted off the cutting board.  Had I put that stuff on their plate and presented it as "dinner," I would have gotten a yeah right!  More like "that looks yucky," "I don't like that," "I want grilled cheese," you know the drill.  It was fun, and I am done whining.  Rachel and I are off to play checkers while Adam and Daddy play chess.  I am feeling a little yuppity, but it beats another episode of Dora and Dino Dan!  Plus, of course I got dessert too :)

Here's a before and after.                        Dinner = Success!

01/21/12 - The Great Whine

I realized I forgot to update.  We didn't qualify for Adam's next treatment this past week.  His ANC counts were still <500, so we are rescheduled for next week.  He goes in for his blood test on Monday, and hopefully we will know Monday afternoon when the big sleepover happens!

In the meantime, I'll be honest.  Getting very stir crazy.  With the weather being crummy, it's hard to find things to do!  I am burnt out of puzzles, painting, coloring, board games, movies, building forts, playing princess, match box car races, and video games!  Even the new air hockey table reminds me that we are confined to the house because that's why we, I mean Santa, got it for this month of isolation.  So, what I was once enjoying as a learning experience on how to stay home is now restriction - house arrest!  We looked into the drive-in this weekend, but no kid's movies.  We thought about picnic in the back of the truck.  One of Josh and my favorite dates from back in those days was when we picked up pizza and a 2 liter from Domino's and ate in the back of the Blazer at the top of Tilden park, but it's too windy and cloudy to even enjoy that. Ok, I am whining, but I really thought I would be motivated by home improvement projects and crafty-stuff.  I've been exploring pinterest a lot lately.  But in reality, I do not accomplish anything unless it is under pressure.  For example, the ornaments are in the attic from when I started putting away the Christmas decorations, but I have accepted that the tree looks perfectly normal as a "winter tree" in the living room. And I have all the time in the world to take the last wreath, garland, and this tree down to put away, but they remain.  Lovely as they are, they serve as reminders of my laziness. Yet, here I am typing.

Enjoy Inspiration Point at Tilden Park/Wildcat Canyon:  You Tube Panoramic!

Adam, you ask?  Oh yeah.  He's totally fine.  Happy as a clam.  He is slightly addicted to Zelda, but we manage that by requiring piano practice to earn video game time.  He is starting to feel much better than the last several weeks.  He's more energetic and silly the last few days.  Fortunately (or unfortunately depending on how you look at it), that means he is ready for the next chemo treatment.
Adam practicing.  We thought we cut his hair short enough, but when they say "lose hair," they mean bald!  So, we have patches left, but don't have the heart to tell him we need to cut it again.  Oops.  But he can't see the back of his head, so we'll just go with it for now!

Tuesday, January 17, 2012

01/17/2012 - Team in Training

Don't use an acronym for Team in Training... NOT appropriate!

Wanted to share this pic that Megan sent me.  She ran the Rock N Roll Marathon in Phoenix on Saturday for Team in Training to benefit the Leukemia/Lymphoma society.  As a team, they raised over $200,000!  And then ran 26 miles!!  But Adam was with her... Take a look :)

Sunday, January 15, 2012

1/15/12 Group Photo!

When we were in the hospital, I started a scrapbook of everything from photos we took to cards and drawings that we got for Adam.  I also had all our visitors sign it and every doctor, nurse, hospital worker we met sign it.  The doctor's list is called the "Healers,"  and while we were at the hospital, that was absolutely true. Not to mention, we had the service of staying at the Ritz!  But at this point, I strongly believe Adam's awesome progress is largely because of his relationship with his cousins.  He has his best friends at his side every step of the way.  Because they are so close, he sees them everyday, and he gets to play everyday - physically, mentally, and emotionally.  Therefore, his life continues as any other growing, maturing five year old, and especially not in the way of world revolving around Adam (and being sick) all the time.  And look at them!  They are just plain the best kids you could ever know!!  Maybe I'm a little biased :) 

Saturday, January 14, 2012

1/14/12 - Hair Like Snow

Unfortunately, I am not referring to the color of snow when I compare Adam's hair to snow. When he was a baby, that would be an accurate analogy to the color of Adam's hair.  Now, it is a better analogy to the way hair descends from the roots on his head.  Like snow, hair has a gentle, swaying flight downward.  Some strands kind of flutter while some twist like graceful corkscrew pasta twirls.  We find Adam's "snow" on clothes and jackets, pillows and car seats.  I guess we are lucky there is not enough to build a snowman.

So, it was time for a buzz cut.  There was not much thinking involved on my part - it was really an impulse decision.  Aunt Karina had seen Adam distressed about some hair on his collar on Tuesday.  Adam has always been squeamish about hair, especially my long, straw-like stuff touching him all the time.  His hair happens to be exactly the same thickness and texture and probably pretty itchy on his skin.  Plus, I knew it would be easier for all of us if we took it off at in one swoop instead of watching it get thinner.  I asked grandpa to do it because I was worried about taking Adam to a barber shop with his counts so low.  He is still neutropenic, and we don't want to take any risks exposing him to people or places outside of the immediate family.  So, out came the razor, and gone was the hair.  Adam was amazingly patient.  There were a couple times the razor got stuck and pulled his hair, but Adam continued to sit still.  The razor was also running out of batteries, which delayed the process, and Adam was not a fan of using a towel like an apron (because a towel's a towel, you know).  Adam could tell we were cutting all the hair off and knew this was not the type of haircut he wanted, but he still did not fight it.  Afterwards he expressed himself, saying, "mommy, I don't really like my hair cut." or "mommy, you cut my hair too short." or ""I really want to go to the barber shop next time."  At least it is my fault about the hair cut and not he woke up one day and the hair was suddenly missing.  We didn't exactly explain that the medicine was going to make his hair fall out.  I would think that would cause unnecessary anxiety.  And, although there was a moment of tears welling on my part, I am happy the time has come and we have some type of proof the chemo is working. 

So, we found out our Qwest is opened on MLK day afterall, which means we'll be able to get Adam's labs Monday morning as planned.  We should know on Tuesday sometime what the plan is for his overnight treatment scheduled for Wednesday.  Woohoo!

Monday, January 9, 2012

1/09/12 - Healthy Living (starts tomorrow)

Adam, today, asked me to print out a "healthy foods" picture to hang on the refrigerator.   Ok... So, we looked online to find a food pyramid he approved of. Then, of course, was my question, "So, Adam, why do you want a food pyramid on the refrigerator?"  His response, classic, "I am going to start eating healthy so I won't be sick anymore."  Hmmm.  So, we have hit the mental capability to draw conclusions on our own...  Kind of like on the way home from piano and Adam says, "you know, mom, the coolest instrument are the drums."   Ok, intervention needed (on both accounts, but we'll focus on the pyramid for now).  Adam, remember when you were feeling sick, there were bad guys in your blood? They are gone.  But we have to keep taking medicine for awhile to make sure they don't come back.  I know sometimes you feel tired, but that is going to get better in a couple weeks.  How do you feel today?  "uh, uh, uh, well, I don't really like pasta, you know." Ok, I'll keep that in mind.  But it's always a good idea to eat healthy, so let's do that :)  His next question, "does sugar make me sicker?"  No... It's not good to eat a lot of sugar, but there is sugar in a lot of healthy foods too. "Ok, good."  Lol.

Interesting picture I found:

In ALL, too many stem cells develop into lymphoblasts and do not mature to become lymphocytes. These lymphoblasts are called leukemia cells ("Bad Guys"). The leukemia cells do not work like normal lymphocytes and are not able to fight infection very well. Also, as the number of leukemia cells increases in the blood and bone marrow, there is less room for healthy white blood cells, red blood cells, and platelets. This may lead to infection, anemia, and easy bleeding.