12/19/11 Clinic Day

Josh and I woke up on edge this morning. Adam's appointment to begin Phase 5, "Delayed Intensification" is this morning.  Adam is basically going back on the same schedule as his first month in treatment.  My way of handling the stress mimicked that of being 9 months pregnant and "nesting."  Christmas cards in the mail, check. Laundry sorted and started, check. Dishwasher unloaded and bills paid, check! All before 7 am. On the bright side, motivation for these things is usually tough, so I should feel some freedom for being done.  In addition, and worse, I was questioning all the things that have gotten me through the last four months... Peace?  Must have been naivety. Strength? Must have been adrenaline.  My crazy head taking over!  Since this time I know what we are going in for, the shock isn't there nor the urgency, and I don't want  Adam to do all this again (reminds of one of my favorite Danelle quotes from my MSSB days: "I don't want to be a pirate!").  And that trust in God's promises -- that just kicked in instantly on the morning after Adam was diagnosed, by the way -- was totally uncertain this morning!  You may have caught on to what I was doing through these mindless chores though - trying to get some control.  I have a hard time with this schedule and uncertainty of results (side effects-wise).  There is no, "ok, Mrs. Hendren, let's take a look at your calendar to schedule our next appointment."  Or, "first you can expect xyz is going to happen in 32.6 hours, and then..."  In fact, we don't even know when our next appointment is until we go this one nor whether Adam will be feeling sick, tired, nauseous, losing hair, irritable, or hungry.  Maintenance was nice while it lasted...  Not a good start to this particular day.

On the other hand, Adam is in great spirits.  He is full of energy!  Our clinic room had two rolling chairs, so he was trying to balance with one knee on each chair.  You might ask what mother would let her child balance on rolling chairs in a doctor's office because, yes, he did fall off and land on his be-hind, but this was better than jumping from the rolling chairs to the bed.  We also played Checkers and  D. Chronicles on the iPad and a new Angry Birds card game Adam got last night from Ezra at the kid's Christmas gift exchange (thanks Laurel - totally brilliant! Isn't everything a card game suddenly?). His new injections were Vincristine, Zofran, and Dexamethasone.  He also got a spinal LP after that.  Pretty intense appointment this time.  You know my complaint of the anesthesia routine.  It is even more unsettling this time since the drug they use is the same Michael Jackson used....  Ok, I'll stop there.  But it does look like milk if you were wondering...

We came home with a 2x per day decadron (steriod, again) pill.  It's not likely he will get puffy this time (but possible), and the eating habits should improve.  He is barely eating pizza right now - that is just unheard of!  Food Network should get its stock out of us once again :)  This time we do pills 7 days on and 7 days off.  After the first 28 days the meds change, but we'll let you know when we get there (I can only keep track of one stage at a time).  The dreaded 2nd, but final, PEG is this Thursday morning too.  Right now, Adam is feeling a little dizzy still and has a bit of nausea this time.  He is happily resting on the couch watching Diego.  Should be a quiet afternoon, but not sure what the next few days will look like.  I'll try to keep you posted.

12/15/11 Santa Claus is Coming...

Jingle Bells and Santa Claus is Coming to Town have been our theme songs the last couple weeks.  It is so fun to see the kids excited for Christmas!  They are at perfect ages to know what is going on.  Plus, now that both Adam and Rachel can read, they know which presents are for who!  Josh and I have a couple's bible study that meets at our house every other week, and yesterday we did a white elephant gift exchange.  Unfortunately, when I pulled out one of our gifts, it looked like a mouse got to it!  More like a nosey child trying to peek.  Now, I don't know for sure, but I am guessing it was more likely Rachel than Adam, but I think I am going to have to be more careful with leaving young kids unsupervised around presents...

On Saturday I did some mass baking while Josh and Rachel went to pick out a Christmas tree.  Adam decided he would rather stay with me.  He said, "You know mommy, I need to help you make cookies because I'm going to be a chef someday." Lol.  Ok, I thought the Food Network and crazy cooking thing were just going to be a phase of chemo, but apparently not.  I love it!

Josh and I are both looking forward to our last day before Christmas break tomorrow!  And I think we are all finally over our colds and what-nots.  We both have two weeks off.  Praise God!  We take Adam in on Monday for his first appointment in this next phase.  Praying for some kind of miracle that he is not feeling sick and grumpy, but we gotta do what we gotta do, right?  Instead of making a paper Christmas countdown chain, I am thinking of making a Phase 5 countdown chain!  Feeling a little anxious as you might be able to tell.  Will keep you posted!

11/24/11 - F.I.V.E.

So, it's been awhile.  But so nice to see you.  It is safe to assume that no news is good news, but I have some updates to share.

#1- Adam is five now!  We celebrated his birthday on the 24th, Thanksgiving day.  He is very excited to hold up is whole hand to show "how much" he is now.  I am amazed at the things he can do - his favorites being reading and riding a bike!  He is looking like a little boy now too.  When did that happen? 

#2- We celebrated this big birthday milestone and Thanksgiving at the happiest place on earth:  Disneyland!  There was quite a bit of anticipation leading up to it - can we go, can we not?  We didn't really ask for permission to go to Gilroy Gardens a couple months ago, but this seemed like a little more of a big deal (enter sarcasm). On the Thursday before we left, the doctor thought it was possible we could make the trip.  So, on Saturday, we told the kids... and left for a Family Life conference in Monterey. Lol.  Sunday night and Monday morning, I packed the bags while Josh and Adam went to clinic. Thankfully, the doctors confirmed (while maybe not their favorite idea) it was ok to go.  So we left that afternoon!  It was actually amazing timing.  A couple weeks ago we went in for his chemo, and we were told his counts were not high enough to administer one of the medicines.  This was kind of odd, but not totally unexpected. We just skip it this time so his immune system can recover, and take it next time.  That next appt. happened to be the 19th (Disney departure date).  It gave his body two weeks to recover, plus even though he got the chemo and LP the morning we left, it takes approx 5 days for it to affect him.  So, if he does get tired, it will be our way home on Friday.  Praise God!  While we were there, everything was great.  There was no stress, we walked circles around the park, Adam went on Buzz Lightyear 3x, and Rachel met every princess.  We may have been physically exhausted from the carrying of kids passed out/dead weight over our shoulders on the walk back to the bus every night :) But Disneyland through the eyes of kids is truly magical.  Especially at Christmastime.  And I am so thankful we were able to go.

#3 would be that Interim Maintenance is done.  It was nice while it lasted.  Treatment only ever 10 days, and pretty non-invasive at that.  Adam looks healthy, has high spirits, and has really been back to normal the last month or so.  Even better, we have two total weeks off!  On the 19th we start our next phase, Delayed Induction, which is very similar to the 1st month... all over again.  Not the best Christmas present, but at least Josh and I will be home from work.  And it's never too soon to pray for a smooth and easy recovery!

I can easily identify what I am thankful for this holiday season: #1 to be cancer free.  We are all sick with colds right now.  Coughing, sneezing, stuffy heads, but I am still praying that everyone we know is protected from cancer, and that a cure is found, and I will take the common cold any day over that.  #2 Family and friends. It truly "takes a village..." and #3 That we have hope.  Where else would we have hope if not for God?   There would be no peace, no hope, and life would be a day in, day out hamster wheel if we didn't have a savior to rely on, cast our troubles on, and soak in the promises of.  Life can be a rollercoaster, or it can be simple. I believe you choose your ride.  Happy December!

10/31/11 Happy Halloween

The last clinic day was also a holiday - Halloween.  Not my favorite holiday, and clinic is not my favorite way to spend a Monday (or any) morning.  I am glad though we don't have to do the spinal injections for awhile.  Adam is back on the vincristine (chemo) and a yellow chemo that takes 10 minutes to inject.  Starts with an m... Hmmm, will have to get back to you on that one.

Clinic went pretty smoothly.  Adam played Angry Birds most of the time.  We headed home and I had enough time to go to school for 1/2 a day.  Then we headed to Uncle Jason's house for Trick or Treating.  This is always an interesting experience because Adam hates costumes, but usually when there is candy to be collected, we can convince him.  This time, there wasn't much hassle about it.  He was Spiderman (with a nice, protective mask and gloves)!  Rachel was Aurora aka Sleeping Beauty.  Everyone had a blast.  My way of harassing trick or treaters was to make them guess how many seeds were in the pumpkin before they "earned" their candy proceeded by a reminder to study their multiplication tables.  Best costume of the night: a very creative Mad Hatter with impeccable make up.  It was fun as much as I grumble.

Adam's demeanor is still positive.  He does not eat very much and is very picky.  Last night he accused me of ruining the ketchup because it was too "spicy."  It was hard to convince him there was no way I could alter the squeeze bottle.  His staples are fish sticks, grilled cheese, and milkshakes.  At least some of the food groups are covered.  Next clinic is Thursday.  Same drill.  Pretty anti-climatic if I do say so  myself.  I am looking forward to our church's women's retreat this weekend.  I get to share our journey with thus far plus run the Power Point for worship.  I am looking forward to some 1:1 time with the "big man" in the foothills.  Good stuff.    Until next time... May the force be with you!

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.