Tuesday, February 28, 2012

02/28/12 - Headaches

Adam continues to get headaches since his LP last Friday.  They are not as bad, and he is not throwing up since Saturday.  On Monday, Josh was staying home from work (because he is now sick), and Adam's head was hurting pretty badly, so they went to the clinic.  Things are so much easier during the week, when we can talk to "our team."  Basic diagnosis is that it is related to the needle used on Friday.  Treatment?  Soda!  Not anything I would have come up with in a million years.  Apparently he needs caffeine.  So, we gave him Dr. Pepper.  A usually mellow kid was hyper, but nothing too crazy, luckily.  He had a piano lesson, and that is when I could really tell.  He was much more outgoing and wiggly.  Then, at bedtime, he was jumping and flopping all over.  He settled down ok though.  And we're glad to have a treatment.  Adam can't take Advil or Ibuprofen, though we've tried Tylenol (it just didn't work).  Six months ago, giving soda to my five-year-old wouldn't have been good news to me (had hoped to keep that away for many more years), but at this point, not much is surprising.  Modern medicine!  When Adam was a baby, he was horribly constipated all the time, so instead of water, we had to give him prune juice!  Haha!  Unfortunately, it is very difficult to get him to drink plain water since he has had prune juice since he was a year old, and now that we've given him soda, it is only going to get worse!  Oh well, there are some battles that were never meant to be won. 

So, we have had a crazy last couple months.  I remember saying today, "if you ever think it can't get any worse or more hectic, then you are guaranteed to be surprised." We have have been more sick lately, more tired, softball is intense, work is busy, just one thing after another!  Such is life, and life is such.  Praise God we can rely on Him to never leave us and even carry us through.  Health is such a blessing!  Without health, there are so many handicaps... Everyday that I can can play with my kids, go to work, coach softball, what have you, God is teaching me appreciation for every little thing.  Humbling, I think.

Sunday, February 26, 2012

02/26/12 - Perserverance

Friday Adam went in for his 12th? 13th? LP.  He has been getting nauseous the past few times, and it got worse this time.  He threw up when he woke up from the anesthesia, when he got home, the next morning, and that evening.  He would say he had a headache on the top of his head, and a few minutes later was throwing up.  Josh called the Oncology group, and they said to keep an eye on him to see if the headache persisted.  They were cleared to go to the Monster Truck show at the coliseum, so Josh, Uncle Brian, and Daniel took 5 small kids to watch the show :)  They had a great time with nachos, popcorn, and who knows what else, but on the way home, well, unfortunately, the headache came back, lasted for 20 minutes, and another up chuck.  Josh and Adam ended up in ER.  I was at Beach Blanket Babylon, and completely clueless to the whole ordeal.  I felt so awful, neglectful, selfisih for not being around all day when this was happening!  I grabbed some overnight clothes from home since Josh wasn't able to come home before he went to Children's, kind of realized the guilt was ridiculous and I can't live my life in fear of something happening when I'm gone, and met them at ER.

Adam had a blood test and CT scan while there.  The Mexa. injection can cause blood clot or toxicity in the brain - both completely fixable, but sounds completely scary!  So, we waited while Adam watched TV from 11 pm until 3 am with the occasional interruption from a doctor or nurse.  We thought we were going to be admitted because it was so late, but it ended up that all the tests came back negative, so they sent us home.  Phew!  Still on watch, and praying that it was just a nauseous reaction to the anesthesia.  Praising God that this was just a scare and Adam continues to avoid any side effects or extra add-ons to his treatments, and thankful he remains in remission.  Still praying for healing, strength, and good spirits for Adam.   It is amazing how easy going Adam is for every appointment, ER visit, blood test, x-ray, whatever, he still just goes with the flow.  He sat completely still for the CT with no trouble at all.  They missed his port (twice) when accessing this time (how that happened, I will not begin to dwell on), and he was upset, but not hysterical or disobedient to what they needed to do.  An awesome kid, this one.

I think Josh and I are starting to get a little worn out.  The weekly or bi-weekly appointments, Adam's roller coaster of wellness, difficulty to communicate between us, and underlying stress is getting, well, old.  I think, with the light before us, we are starting to see the end of this intense time, and looking forward to the Maintenance phase.  Adam has his Kindergarten assessment March 2nd, we have earmarked Easter for our first day back to church, and we're just looking forward to some of these "normal" things to happen.

Sunday, February 19, 2012

02/19/12 - A.R.R. (Another Random Rant)

This past week was about Valentine's Day.  A very confusing time for me.  Usually that translates to speeches about ridiculous acts of courtship and flowers that die in a week to anyone who will listen (these days, that would be high school math students). One of the legends of Valentine's Day reveals the purpose is for married couples to celebrate the meaning of love in their relationships.  Valentine was a priest in approximately 250 AD who, after Emperor Claudius passed a law forbidding marriage (so more men would volunteer to be Roman soldiers), continued to marry couples in secrecy.  He was caught and executed on February 14, and we have empowered Hallmark and florists ever since.  So, if Valentine's Day is supposed to be about celebrating married couples, and marriage is a representation of Christ's relationship with the church, then why did it get so puffed up?  Perhaps I am being crass, but it is so much easier to get a dinner reservation and enjoy my husband on any other day of the week rather than a Tuesday night in the middle of softball tryouts.  Valentine's day is a great tool for kids though.  We made Valentines (cutting out paper hearts and coloring), and received Valentines from friends - which made the kids feel extra special.  So, while I still say the media is ruining a perfectly good holiday, kids make up for it.  (One hour later...)  In reflection, my perspective goes as far as commercials and high school.  I need to get out more.

Adam has been completely fine since our hospital visit last week.  His ANC has recovered and we were even given the clear to go to cousin Savannah's birthday.  His ear infection cleared up very quickly after the IV antibiotic, and the cough is pretty much gone too.  It is Rachel and my, actually, colds that are lingering.  Because they are only colds, there is no bug killer that will just wipe it away.  So, we cough and sniffle, but pretty much can continue everyday life.  Adam's next appointments is Fri the 24th for an LP.  I did, finally, get the bio hazard out of our house.  We just packed up the used syringes and gloves to a box with a return label, and I took it to the post office.  It is very strange to me.  I was explaining to the clerk that I wasn't sure what to do with one of the labels, and she kindly tried to read over it and check if I filled it out correctly.  I am laughing now because I, of course, told her too much and she was probably considering whether to put on gloves before she touched the thing.  But, nonetheless, we're all done with home administration.

So, President's Day weekend - kind of happy to avoid the weekend rush to the snow.  Next year, I think, that will be us.  The kids are just about ready for skiing lessons.  Still haven't ruled out a snow trip this year, though.  Sledding is a good individual sport with bundles of clothes and not too much physical exertion.  Maybe... Until then, we are looking at possibly another day at the beach to try kite flying, round 2.  Happy weekend!

Sunday, February 12, 2012

02/12/12 - Busy Week, a Play by Play

Tuesday - Adam went in for labs.  We have one gal that is amazing.  This was an easy day.  But he usually is a little sensitive on lab days, regardless.  In the afternoon, he was exceptionally sensitive and complaining about his ear hurting.  Grandma called Dr. Ross' office to check him for an ear infection.  Conveniently enough, the rain the night before was enough for softball practice to be cancelled.  I pulled up as they were loading in the car.  The timing was too perfect for it not to be a God-thing.  Sure enough, ear infection was there and we are prescribed Omoxicilin.  It only takes the pharmacy 2.6 hours to get the request and fill it.  We survived with a little help from the 9.99 family Shangai meal at Safeway.  It actually fed 5 of us!

Wednesday - Clinic calls with lab results.  Adam needs a transfusion and the clinic is so busy, we need to come down right now (to get in this week).  Of course, the 1 hour I do not have my phone on me due to classroom mayhem is the hour Sandy gets the call and is already gone to the hospital.  I hear my voice mail and leave immediately.  Rachel is dealing with a cold of her own and particularly cranky with grandpa - apparently wanting mommy.  When I get there, she wants to stay.  How to make a three year old happy?

Thursday - Adam's transfusion went well.  But he is still lacking energy and spikes a fever.  It lingers at 100.5 for awhile, but then goes up to 101.  That is the melting point for Adam.  We have to take him to Children's ER right away.  I leave school at 2:30 and we're in an ER room by 4:30 (not before going home to grab some extra clothes, snacks, and a book).  By 9 pm we're back on 5 east for what looks like a 3-day stint.  Adam is exhausted and sleeping.  They gave him a chest X-Ray, antibiotics through the IV, and drew blood to check for bacteria.  The drill is to rule out pneumonia, a line infection, or anything else serious enough to treat with super-antibiotics.  In the mean time they treat the ear infection.  The doctor even offered morphine for pain.  Luckily Adam fell asleep without it and we didn't have to go there.  I am sure it is a miniscule dose for a small kid, but I'd like to avoid the narcotics as much as possible.  I slept really well too, still tired from the last couple days, and the nurse showed me that the chair actually stretches out to a bed (something I didn't figure out last time)!

Friday - We wake up a couple times during the night with Adam coughing.  He pops up at 7:30 hoping for Wild Kratts, but we missed it this time.  I now learn the reason he jumps out of bed the second one eye opens on a daily basis.  Wild Kratts is a new favorite show on PBS, on at 6:30.  We settle for Calliou (ugh!).  He hasn't eaten anything since Thursday lunch and shows  no interest in the pancakes and toast I order.  I can hardly get him to even drink anything.  So, I am thinking, we're going to be here for a week!  Nurses have to wear masks and gloves to even enter our room like we are omitting some biohazard chemicals.  Surprisingly enough though, the doctors come around and tell us his fever has been gone since the  middle of the night, all the tests are negative, and we can either stay one more night (for fun) or go home.  Let me think...  Go home, of course!  I'd much rather be watching TV from my couch than the hospital bed.  We prepare for departure.  I make a bathroom trip and find chaos in the hallway.  Annoyed that the bathroom door is blocked, I put my head down and "excuse me, sorry" only to realize, hey, that girl has a pom pom?!  I come back out and there are two Raider players and two Raiderettes.  Huh?  They are delivering gift baskets for the HOPE foundation out of Indiana? (Screech, halt) Indiana?  They visit a room or two for a photo op and are gone within a few minutes.  The nurses pass out the rest of the baskets.  Now, I don't mean to be a cynic, but if I am grading the "community service" of this event, I am giving a D-.  Two kids, a total of 30 minutes (5 of which are actually visiting the kids, the other 25 prepping for pictures), giving out baskets you ordered from Indiana?  I can't help but to feel like the kids were used for good PR.  The basket is impressive.  The contents include: a Ball University notepad and pen, Indianapolis Colts water bottle, Indiana Pacers mini basketball, a couple books, puzzles, and playing cards.  Oh yeah, and they sneaked in a Raiders hat and mini football.  Now, I realize little kids probably don't know the difference, and the kids they did see were probably elated and will talk about for years to come.  So, I am still apologizing for being a critical Bay-Area-native disappointed in our local football team's lame half-hearted attempts to show their "give-back" to the community.  The Raiders continue to look ghetto in my opinion.  Cynical, I know.

 So, anyways, we're home.  Adam is feeling better.  We all took a long nap on Saturday, and I think regaining energy.  Funny how a week ago we are running around at the beach and this weekend we are dragging to get out of our pjs.  That's just the nature of the beast!  I didn't mention, my grandpa was also in the hospital for high potassium and high risk of heart attack, Thursday.  He had a minor surgery, a tube placed in his chest, and has to be on dialysis and will be staying a few days.  Rachel and I tried to visit Saturday evening and find out that kids under 12 are not allowed.  Oops.  Hopefully will make it back to keep him company and get the rest of the details. 

Other than that, We should be pretty quiet for a couple weeks as long as Adam recovers from his ear infection-cough combo.  He has finished this round of chemo until Feb 24 when he gets an LP.

Speaking of, Mexothrexate shortage.  We haven't heard anything about it until Saturday's newspaper announcing that people are "panicked" by the shortage of this chemo drug (used to treat mainly ALL, but also rheumatoid arthritis and some other cancers).  The article says hospitals will be out of it within two weeks.  Unfortunately, our whole next phase revolves around injections of this chemo.  I am not going to worry in the  meantime - our doctors haven't said anything, so I'm not sure of the reality of this.  I am definitely not going to trust modern day journalist (who's job is to create fear in readers as opposed to provide unbiased information).  Even if doctors did bring this up, we've been taken care of thus far, no reason to over analyze and lose faith now.  Only 62 days until Maintenance...

So, if you can ignore and forgive me for my disappointment in the world, in general, we are recovering from being sick (along with everyone else, it seems).  Trying to make sure Rachel doesn't feel like the "other child" as we rushed Adam around to every medical institution available, and sitting back to ride out this recent roller coaster.  Happy to report Josh kicked butt at work after weeks of long nights and a 70 slide Power Point presentation, and I am excited for softball season to begin.  Life as usual - trying to let go of the reins and trust and follow the path ahead of us.  So far, we're improving.  And happy with that.

"The Lord is my light and my salvation - whom shall I fear? The Lord is the stronghold of my life - of whom shall I be afraid?" - Psalm 27:1

Sunday, February 5, 2012

02/04/2012 - Another Post About Hair (and the beach)

Dear Blog, I thought of you all day.  We had an eventful Saturday, and I wanted to share everything.

It feels like summer - the temperature might be barely 70, but the sunshine is enough for us to want to be outdoors... Badly!  Our options are limited with the port accessed, we don't want Adam to compromise his line.  It was actually Adam's idea to fly his new kite.  There is, of course, no wind anywhere, so we went on a hunt for wind.  We started in San Ramon/Dublin, but no luck.  Our next idea was by the bay and headed over the San Mateo bridge.  There were sailboats, so we had hope.  However, on the other side of the bridge, there is not one branch swaying, so we decide to go farther west.  We end up in Half Moon Bay, and not even a breeze.  Really?   We stopped in Moss Beach where there is a serious crowd of surfers and spectators, and come to find out, there are two kites flying by the beach.  Yes!  We get the never-been-opened kite out, and Josh begins assembly while Rachel and I watch some surfers.  Ten minutes later, Adam is using the kite rods as samurai swords and the kite is not looking like a kite.  By the time we figured the thing out, the other kites were landed.  There was not even enough wind by the ocean to get this thing in the air.  Hilarious!  So, we went to the beach.  Adam drew in the sand while Rachel wanted to get her feet wet.  I froze my toes with her, but totally worth it.

The next cool thing was we hunted down a Triple D restaurant called Gorilla BBQ in Pacifica.  It is a BBQ place in a train car on the side of Hwy 1.  No tables, so we tailgated.  Adam went inside to see the picture of Guy Fieri with the owner.  He was stoked.  And he actually ate chicken, cornbread (best I've ever had!), and corn on the cob (this doesn't always happen lately)!  Good times.

 So, the literal first big event of the day was the "big cut."  After Rachel's dance class, I went to see hair extraordinaire, Julie, and poof!  Ten inches gone!  I am donating my hair to the Childhood Leukemia Foundation.  I actually chickened out in January.  Well, I legitimately forgot about the original appointment I scheduled with her (subconscious or not, IDK), and she called me because another one of her clients showed up earlier that she was supposed to - so I was off the hook.  Today, I was ready, and I am 10 inches shorter (and possibly 5 pounds lighter)!  She compared my hair to Asian hair - thick, coarse, heavy.  And once it was gone, I realized how true that is andjust how much 10 inches really is!  I have never had my hair so short (maybe close one time before the perm days when in 6th grade), but I have also never appreciated why I leave it long either.  So, my hair is only one small bunch of many they have to collect just to make one wig, but one step closer is better than none.  It's like the $1 contributed in the check out line (not that I am condoning donating $1 for the charity of the month at Safeway or something like that).  But a lot of $1 makes a big difference.  Not sure how long it will take to grow my hair that long again, but it's an easy, low-commitment way to help a child going through chemo.  We are glad to have a boy - it's not a big deal for him to be bald.  A girl though, especially school-aged, has to deal with the roller-coaster of treatments and then deal with the image thing on top of it.  One less worry is one step closer to a cure in my opinion.   So, of course I can't resist posting a before and after...

Likely never to look like this again, no idea what to do with this!

Can't figure out how to rotate this, but the form says:  "Wigs 4 Kids & Childhood Leukemia Foundation in Honor of Adam Hendren"

Saturday, February 4, 2012

02/03/12 - Take Two

Post Access - home treatment, take two.  Adam got his port accessed again at clinic yesterday, but it was an easy appointment since that was all he needed to do.  It was Josh's turn, so I don't have the first hand details, but he got to talk to Dr. Beach, our main doctor.  We started the Ara-C injections in the morning, which will work better this way because I can take it out Monday morning before I go to work instead of Monday evening (after softball tryouts, that is!).  Adam is still not a fan of the inject-at-home.  This morning he apparently hid in the closet when I went to get the supplies.  It didn't work out for him, though because he had to go to the bathroom before I came back.  I think mostly, he doesn't like the saline flush I have to do because it smells salty.  I have tried to give him juice or crackers during so he doesn't notice it, but there's not a lot that we can do.  Every time he goes to the clinic to get injections, the line has to be flushed with this stuff.  So, I wonder if he is just getting a little burnt out?  Good news is after this week (Monday is last day of Ara-C, Thursday is last day of the 6T6 pills, and 2/24 is the last LP of this phase), we go back to Interim Maintenance for 56 days.  After that, we are in the home stretch: Maintenance. 

A little worried about the number of bugs going around.  Flu bugs, viruses, colds, allergies.  It seems all those things are in full season.  Adam said he woke up with a sore throat this morning, so we are watching that, but could just be a result of his snoring, so not worried yet.  We have still been extremely blessed in our health.  Rachel has a cough in the morning which is ominous, but Josh and I have avoided anything serious which we are grateful for especially because of the number of people and different environments we are in everyday.  I get sick in March every year - a combination of cold season, burnt-outedness, and being outdoors in the rain and wind.  So, I am anticipating that, but am being extra cautious with vitamins, warm layers, and Airborne on hand!  Other than that, we praise God for Adam's progress and the support we continue to get from friends and family - plus a prayer that Adam will be protected from anything that is going around.  He has enough going on in his body for the time being!