Thursday, December 29, 2011

12/29/11 - A Rare Case (of good)

Clinic story to report - and praises are in order.  Josh and Adam went to clinic on Tuesday.  Adam had two chemo injections.  Not a big deal.  We see different doctors all the time.  There are several in oncology/hematology plus it is a teaching hospital so you will get the occasional doctor in their rotations. But this week they saw Dr. Gomez (who I haven't seen since our hospital stay - though Josh had seen him once since. Remember the poor cornered doctor from day 1?).  Gomez shared that he was surprised he hasn't heard anything about Adam - at all!  This is good news and rare because he hears about problems patients encounter.  For instance, if Adam had a bad reaction to a therapy, anesthesia, or any drug he is given.  Or if Adam had gotten sick especially the flu (which we are extremely susceptible with Adam's fluctuating immune system).  Gomez said it was extremely unusual that none of these things have happened and that Adam hadn't even spent a night at the hospital since his original visit.  Now, we wouldn't have had any way of knowing this (not like we have had anything to compare his progress to), so it was wonderful news!  As mentioned before, no news is truly good news! Praises for not only answer to our prayer of strength and healing for Adam but for the abundant answer of extra protection and grace!

And my God will meet all your needs according to his glorious riches in Christ Jesus ~ Phil 4:19

Saturday, December 24, 2011

12/24/11 Christmas Eve

Merry Christmas Eve!  The weekend we have all been waiting for!  Our plans are to lay low - do the family thing.  I am attempting my first turkey!  I have never had to cook one before - we do Thanksgiving dinner at Curt and Dottie's (grandma's side of the family) and Christmas dinner at my grandpa's house.  I am not sure what the four of us will do with a 7 lb turkey especially considering Adam hasn't been eating much, but we'll do our best.  Rachel is definitely growing and needs to fill her buddha belly so there is some hope.  Plus, this is the reason I have a second freezer in the garage!  Wish me luck!

This is how he normally poses for pictures anyway
Adam shows signs that he is reacting well to the new medicines.  He has wanted to play cars, ride his bike, go to the library, but these are only in small spurts.  We keep Adam cautiously busy. I think it helps him get better faster.  My favorite was the candy-covered pretzels we made yesterday using Christmas molds!  He is good for about four hours and then he crashes.  His favorite pose is face down on the "comfy chair" with his feet curled up on the armrest.  That's the sign he needs a nap!  Then he'll sleep for a couple hours and go again.  Bedtime has been about 11:30 and 7pm.  Usually I am excited when the kids want to go to bed early, but right now is not great timing.  But we could do Christmas movies and Christmas books and (go looking) at Christmas lights! Ok, fine I guess they can go to bed :) Only one more day of the Decadron pills and then we get a week off, so next week I am sure we will  have our hands full with stir-crazy toeheads.

I learned something yesterday.  I got a really great book that I know I am going to love from Roxanne and Troy for Christmas.  It is a Max Lucado trio in one.  I started with Come Thirsty, and as the title implies it talks about water.  This is something that spoke to me as a coach and as a woman in general, but especially in this moment of this week it spoke directly where I have been struggling spiritually.  You know why?  Because I dried up!  Our body needs water to swallow, temperature control, to fuel our organs, lubricate our limbs, help the blood travel, etc, and our soul needs water so our heart doesn't turn into a raisin.  Tis' the season, Jesus is our water - that's the gist of Ch.1.    Temper/moodiness, worry, guilt, fear, irritability, insecurity, I could go on... We need spiritual water to fuel our soul.  The story is told in John 7, but specifically, John 7:37-38 says: “If anyone thirsts, let him come to Me and drink. 38 He who believes in Me, as the Scripture has said, out of his heart will flow rivers of living water.” It's funny how you read these verses (especially a common one like this verse), and you think, yes, this is great, makes sense, check.  But then it comes around later at the perfect time when there is serious application needed.  I even have a cool acronym for you (thanks to Max, of course):  Think of Jesus as your WELL: his Work on the cross, the Energy of his spirit, his Lordship over your life, and his unfailing Love.  Neat, right?  Ok, cheesy math teacher, moving on... Not going to church and only having occasional time to work on the soul has caught up to me - it was an easy time to prey, but now I have this great book and found that my church has all the Sunday services via podcast online.  I'm going back to work (before I really have to go back to work that is)!  Loving God's timing today - He truly will never leave you  and meets you right where you are at!

Friday, December 23, 2011

12/22/11 PEG (in the ) Legs

Our second PEG was today.

What can I say?  It was competely awful.  Just like the first time (see 8/29/11).  If you want to see a easy going, go with the flow (not to mention slightly claustrophobic) 5 year old go berserk, get four people to hold him down so an intramuscular shot can be given in each thigh. I am pretty sure his screams echoed through the clinic.  It wasn't the pain as much as the holding him still part.  How scary would it be if you were 45 pounds and four grown adults were holding you at each limb? 

On to the bright side...  No more of those in our future.  In addition, there was no allergic reaction.  We had to stay at the clinic for two hours after the PEG to monitor Adam for any reaction to the injections.  The medical term is PEG L-asparaginase.  All cells in the blood need a chemical called asparagine to stay alive. Normal cells can make this chemical for themselves, while cancer cells cannot.  The asparaginase injection breaks down asparagine in Adam's body. Since the cancer cells cannot make more asparagine, they die. Basically, this is a crazy reproduction enzyme.  It is amazing the things going on in Adam's body and all we see is a normal kid.  He is slightly pale (more than usual, of course) and his eye lids are a little dark, but otherwise you wouldn't know that there are enzymes and chemicals going to work in his blood!

A common side effect of the PEG is an allergic reaction - swelling or hives.  This is something simple that kids would take Benedryl for.  That didn't happen. Nausea, Diarrhea, unusual bleeding or bruising, abdominal pain (from enlarged pancreas), dehydration, mouth sores, and/or skin and eye yellowing are all side effects that they look for after the PEG (and in the days to follow).  Adam was definitely fatigued yesterday (remedied by breaking out the old Nintendo and Duck Hunt!), but he did not have to deal with any of these side effects.  Praise God!  And so far this morning (since I am technically writing this on Fri), he looks good to go!

So, we have had a low key week.  Not a lot of energy and needing daily naps and early bedtime, but Adam is still plugging along.  We should hear about his blood counts today which will tell us how to plan for the Christmas Day festivities.  But there is no doubt, the kids will definitely have Christmas!  I should mention, they don't know how to read a calendar yet... Christmas could be in one day, three days, or in a week and they wouldn't know the difference :) 

I am starting to feel the stress settle down in myself as well.  The anticipation of this phase and this injection was just about the breaking point for me.  Luckily, I have had prayers to lift me up and I wrote God's promises in a book that I carry.  I think I'll save you from the dark places my brain was taking me the last few days, but I am feeling like celebrating today!  An idle mind is an opening for Satan to move in, he knows our weaknesses and uses it for prey. I have not been putting on my armor (Eph 6: 10-18) nor seeking refuge as I had before.  What I really needed was to count our blessings because it is really easy to only see the trials.  What Adam is going through is like the flu compared to some of the other kids we have met at clinic.  In addition, we are not alone - especially not Adam!  Some people have to travel miles and miles for access to good healthcare and they do not have family/friends nearby to help.  We have peace (that we will have everything we ever need), hope (in God's greater plan), and joy in life and health and that we get to celebrate Jesus this week!

Merry Christmas to you.  And may your holidays be filled with joy!!
(Adam at 7:30 this morning - ready to go. Where? We don't know, but he's ready!)

Monday, December 19, 2011

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.

Thursday, December 15, 2011

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!

Sunday, December 4, 2011

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!

Thursday, November 3, 2011

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!

Wednesday, October 26, 2011

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 :)

Saturday, October 22, 2011

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!  

Monday, October 10, 2011

 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.

Saturday, September 24, 2011

09/24/11 Out and About

Yesterday Adam had clinic.  They did his first LP of Methotrexate in Phase 2 (i.e. Consolidation).  Unfortunately, the procedure wasn't until 3 pm, so he was again tired, cranky, and ravenous.  He asked to go to the "planetarium" as soon as he woke up from anesthesia (meaning "cafeteria").  Lol.  Daddy took him to get pizza and Doritos.  Mommy spoiled him last time, so there was nothing else he could be convinced to eat!  Oops.  Oh well.  At least it's the little things that keep him happy.  Coming home he was tired and had a headache.  He napped on the couch for about an hour, woke up for a meatball sandwich (his third in three days), and a bath.  Since he almost fell asleep in the bathtub, we turned in early.  Both Adam and me!

The doctor said some things that made us feel pretty confident.  1) we almost made a record of how soon we were released from the hospital after he was diagnosed.  I wanted to know how close we were.. maybe we could find a way that we did break the record.  That's my alter-competitive-ego talking. 2) That he went into Consolidation much sooner than they expected.  Another great sign of recovery and we've got one tough cookie. 3) his ANC levels were so high right now, we could go out and have some fun without much worrying.  Basically, as long as we don't take him somewhere a sick person is going to breath on him, we're ok.  So, we decided to take the kids to Gilroy Gardens since we had bought a membership over the summer (that we've, of course, only used once).

Gilroy was fun, felt like the first thing normal we've all done in over a month, but also one of the most stressful experiences yet.  I have never been so aware of germs nor felt so vulnerable in public. All I saw were grimy fingerprints left on the handlebars of the rides, stray hairs on seats, kids sucking their thumbs and then touching hand rails, and the man getting out of the car we were getting into coughing all over the place.  Yuck!  We were at the park for 2 hours total, but at least 30 minutes of that were bathroom breaks to wash our hands.  I've never used so much hand sanitizer and soap - EVER!  On a lighter note, coincidentally we saw Elaine and the Mendenhall clan there!  I think the last time we ran into them was at the Monterey Bay Aquarium.  Random, huh?  You live 5 minutes from someone...  Anyways, Katie was excited to see Adam, but he was being standoffish.  Kind of his M-O right now - not real social and a little self conscious.  I think he was mostly pretty tired by that time and starting to get cranky.  That, or he already realizes girls have cooties?  He asked to leave while we were in line for the super-crowded train ride, and we were happy to oblige.  Nonetheless, the short trip to the theme park was a full day of fun for us.  The kids don't realize how long they were there - they just know they went to Gilroy Gardens today.  And I have pics to prove it :)  We'll take what we can get. 

Thursday, September 22, 2011

09/22/11 Phase One ---- Check!

Good news - we have successfully completed Phase One (of seven)!  Starting tomorrow, Adam is officially in "Consolidation." The purpose of consolidation is to make sure the cancer is fully in remission and stays there. We thought it would take days, maybe even weeks for Adam to qualify for the consolidation phase.  To qualify, his ANC levels (white blood cell/immune system count) needed to go back up to 1000, and last week he was only at 290.  A "normal" ANC is 1500.  So, when we heard 290, we were ready to pack up and admit ourselves to the isolation ward again!  Last Friday, his dose of chemo was a little lower than we've had in the past and just the small relief helped his body fully recover. After our blood test yesterday, Adam's ANC is now 2000!  What a difference!  Luckily, once again, we have a rapid responder.  So, of course the nurse called us right away to inform us that his treatment tomorrow will be the new consolidation medications. Who would have thought celebrating Adam's first time qualifying for something with take-out pizza and brownies would be for qualifying for new chemotherapy!  A milestone is a milestone, I guess. I'll take what I can get :)

I learned something else new in my research tonight: "When a patient is diagnosed with ALL, he or she may have 100 billion leukemia cells. If induction therapy destroys at least 99% of these cells, the patient is in remission. However, that could still leave 100 million leukemia cells in the body. If these cells are not destroyed, they can grow and multiply and cause a relapse of the disease" (  100 billion!  I had no idea the numbers we were dealing with.  Once you're talking above a million, it's kind of difficult to comprehend because there is not much to relate a number that large to. However, I do know that 100 billion is twice the amount of money Bill Gates has (I'd much rather have $53 billion rather than 100 billion cancer cells - call me crazy).  So, now I'm curious.  I can't find the exact number of total blood cells in a human body, but I found a source that says a "normal" adult has 30 trillion red blood cells. Coincidentally, that's twice the amount of the national deficit!  Ok,maybe I've gone too far.  Back to Adam...

Good news is we can check something off.  It feels strangely productive to be moving into a new phase.  Bad news, everything changes.  You know how I feel about change.  It is very likely Adam and my cooking marathon will be ending soon.  A common side effect of the new medication is nausea.  It is possible he won't eat for full days at a time!  As for the most obvious physical change (hair loss), I wouldn't say he is losing hair per say, but possibly thinning hair.  The hair cut makes it hard to tell.  I think we might be several weeks (maybe months) from complete baldness.  And we need to watch his skin for darkening or rash (he is also super-sensitive to sun.  Thank you September heat wave for your great timing).  It is also common that he will need a blood transfusion sometime this month - this chemo specifically depresses the bone marrow, so his counts will be low, and possibly not able to recover naturally.  So far, everything has been surprisingly manageable.  It's nice to still have a schedule for clinic visits (every week on Fridays).  In this next phase, we won't be accessing the metaport every week, instead spinal injections of Methotrexate.  We are also changing from 3 pills, twice a day to only 1, 1 time.  Our new pill is Mercaptopurine - its purpose is to block the growth of cancer cells.  We continue the anti-pneumonia med on the weekends though - we will always take that during our three years of chemo.  Thank you for your prayers - we are definitely lifted!!  Time to read one of our favorite books - I am being beckoned.  G'nite!

Sunday, September 18, 2011

09/18/11 September is Childhood Cancer Awareness Month

My friend, Jill, sent me a link I have to share.  Please pay special attention to 3:57 and on.  I am not trying to convince you to listen to country music (although it is highly recommended).  This is just SO much of what we are experiencing.  By the way, did you know September is Childhood Cancer Awareness month?  Heard it on the radio - Ironic!  As I was saying... Sheryl Crow: "When you're diagnosed with cancer, everyone around you is diagnosed as well."  Another speaker in the video: "You know people love you in your life, but you don't know how much until you get sick." God and angels right here with us.  I hope I can pass the same love and support that we're getting to someone else.  I am also thinking it would be fun to do the lanterns on the beach :)    I dare you not to get teary-eyed!

It reminds me of my motto the last few days: Earth is training ground for heaven.

In this training ground, we gather of experiences, both easy and difficult, on a daily basis. We learn from these experiences, and ultimately make better, sounder, judgments on how to deal with life in the future.  I daresay, the ultimate thing we acquire in this training ground is love. It is the one aspect of man that makes us most like God – or at least we have the ability to love like He does.   Jesus calls us to in John 13:34 A new commandment I give to you, that you love one another; as I have loved you, that you also love one another. 1 Corinthians 2:9 also comes to mind, No eye has ever seen, no ear has ever heard, nor has it entered the heart of Man, the good things the Lord has prepared for those who love Him. In our heart of hearts we desire this love that will be perfect in heaven.  And there is only one way to get it - through Jesus: I am the way, the truth, and the life. No one comes to the Father except through Me. Got Jesus?

09/16/11 E-e-echo

Last night, Adam had a sleepover at Grandpa & Grandma's house tonight.  He packed up his Spongebob backpack with pj's, blankie, ruffie, play clothes, and my "Diner, Drive-In, and Dives" cookbook.  Yes, he is looking forward to cooking with Grandma.  He picked out steak tacos for dinner and walnut pancakes for breakfast.  He is a boy who knows what he wants.  He enjoys spending time with his grandparents and feels extra special that he gets to stay the night.  It's not like he doesn't see them every day of his life anyway! But really, can you ever have too much of grandparents?  I think not!

Today I got to see the “echo” of my son’s heart.  An echo (echocardiogram) is like an ultrasound of the heart.  The purpose is to get a baseline of Adam’s ticker so they can monitor for any unwanted side effects during the next round of chemo we go through (in October).   The echo shows these things: a measure the size of the heart chambers, pumping function, valve function, circulation, and fluid in the pericardium (the sac that surrounds the heart).   Of course, the echo set off a realization I need to write about.

As I was watching the sonogrammer (technically an “echocardiographer” – one of the few healthcare jobs that is growing due to our aging population and prevalence of heart disease), I felt like I was watching Adam grow up.  Now, let me preface… He is my flesh and blood.  When he is in pain, I am in pain.  If there were any trades in life, I would trade his disease for my health.  But as I watched his heart pump, I realized that he is functioning on his own.  His own independent body and organs, working in harmony, fighting to be well.  While we are his advocate, recipient of all medical information and decisions, it is Adam who is doing all the hard work.  I have been distracted on my own “hard” work.  How hard it is to go to work, clean the house, put food on the table, care for two kids, and then take care of a child with special needs.  But, hello!  I LOVE my jobs.  I love being a mom, wife, friend, etc. I love to teach. I love where we live.  I also love to cook.  I even get to play softball on Sunday nights.  I am doing what I LOVE to do – and OF COURSE daily challenges come up.  That’s life.  Adam, on the other hand is doing all the fighting.  His body is fighting to be well.  Adam is fighting to do the things he loves to do, realizing he is different than kids his age, and trying to learn a new normal. 
On Thursday I was feeling really defeated.  I had a long day at school, Rachel was desperate for attention from Adam (good or bad attention – she doesn’t discriminate), and I picked up my car from the shop just to find out it was in worse condition than when it went in.  The final straw was when I found out that I had been giving Adam the wrong dose of medicine for the last 5 days.  I wasn’t giving him enough.  I don’t know when exactly my brain decided to start giving him 1.75 instead of 2.25 of his pills, but it happened.  I am more greatful that my brain threw up the red flags and I had the urge that something was not right.  And the rush of “failure” swept in.  I thought I was at least composed enough to call the doctor, but the hospital receptionist was pretty harsh when I asked to speak to someone in oncology.  She said, “well, they’ve all gone home, do I need to page the doctor?”  Well, um, I guess I don’t know.  So she transfers me to the advice nurse.  Yes, the general, my kid has a runny nose, advice nurse.  So, I called back and demanded the doctor.  Unfortunately, by the time the doctor came on the line, I was in an uncontrollable fit of tears.  I am pretty sure I asked her if she was a therapist as well.  She of course said, no, and did not think my “joke” was very funny (she doesn’t know me well enough to know that’s as funny as my jokes get).  But as an un-confrontational person who just had to tell a service manager that he is responsible for letting me drive my kids in a car that sounds like it is going to blow up and is therefore responsible for fixing it, and then go through a receptionist with a pitchfork up her (you know what) just to get a doctor on the line, I was spent.  Luckily though, the world is not ending, and I haven’t failed completely.  Adam will be ok, and I am probably a stronger person from the whole situation… somehow…

Adam also had some more chemo today intravenously.  It is really non-invasive with the metaport.  He might feel some pressure, but it takes like 30 seconds to do.  The waiting is actually the hard part.  We have to check in with the doctor, which takes a while, especially because I always have a ton of questions.  Today we met our official doctor.  Apparently, our pediatrician has worked with her and their sons played baseball together.  I am sure Dr. Ross must have arranged for this, right?  Because our doctor team kicks butt.  Praise the Lord for working that out!  She also tells us that this behavior thing and crazy eating thing will be over in about two weeks.  

On that note, here is our latest list of new recipes: banana bread, macaroni and cheese, philly-steak inspired hot links, homemade French bread, steak tacos, walnut pancakes, blueberry sauce, strawberry cookies,  and 50-50 bar milkshakes.  While Adam will probably lose the weight next month (because he starts a chemo that is an appetite suppressant and may make him nauseous), the rest of us are going to be 20 pounds heavier and, well, screwed.  At least it’s been fun!
So, I have posted a couple pics of Adam right now.  Think, chipmunk storing up for winter.  Sooo cute!  I was trying to get him to smile, you can see he was trying really hard not to.  I finally tickled it out of him (and bribed him with popcorn).

Monday, September 12, 2011

09/12/11 Re-Mission

It's official!  Adam is in remission.  This means his chemo therapy program is working.  It is great news that his body is accepting treatment and there are no harmful side effects at this point.  And the cancer is gone!  That means the next 3 years will be focused on keeping it gone.  This is the easy way we were praying for.  Praise God!

Sunday, September 11, 2011

09/11/11 Divine Intervention

Praise the Lord for His divine intervention today.  I have been avoiding or rather missing reality.  

"We are fine."  "Adam is doing great, he is like normal."  Have you heard me say these things?  I have been wanting so badly to be normal, for Adam not to be different - just a "normal" kid.  Because how can a kid enjoy life, be confident, and have friends if he is not like everyone else his own age?  I also want sameness.  It is like this: I am going down a paved, straight, road and anything that comes into contact with us has to fit in this pre-existing, known road.  However, this road could be curving.  Our road can be totally different. There is a chance for us to live lives that make a difference for God's kingdom here on earth.  

So, typically all four year old boys like cars or superheros or legos, right?  Stereotypical boy-stuff.  They are also active, hands-on, busybodies.  But what makes boys "normal?"  Why would I want my kid to be normal?  Normal is defined "conforming to the standard." Well, let's look at the standard around us here on earth.  Is that really what I want my kid conforming to - worldly desires, empty promises, materialism, and instant gratification of "normal" American life?   The world tells us that everything you get is a response to what you do: I pay $40, I get a pair of shoes.  Cancer doesn't work that way.  It is not achieved, it is not granted, it is not chosen, it is not inherited, it is not contagious.  I am sure there will be some connections made at some point in medical history, but regardless of where it came from, Adam is in the unique. He IS different.  Not only will he have seen miracles and God's amazing hand at such a young age, but he will be able to reason and relate to people in a way very few others will.  These things that make him not normal are things that make him extraordinary.  Rachel is also extraordinary.  She will have a compassion as his sister for people the rest of her life. Remember Psalm 139?

If I am unwilling to accept the ginormous change in our lives as permanent, I would be missing out on the greater purpose of God's will in our life.  Adam may be temporarily weak because of his immune system and susceptible to infections, but he is permanently a boy who has/had cancer.  I can shelter and coddle or  show him how this is something that makes him unique and it is good!  It has been difficult explaining big concepts (like cancer) to a four year old.  My approach thus far has been something like, You are fine.  Everything is normal except you need to take this medication.  Or everything is ok, but you can't go to Sunday School for a little while.  This is not helping Adam!  He knows something is not the same.  Also, it is selling us ALL short.  In this type of mindset we will miss the blessings God is offering - let's curve with the road.  Adam needs to learn how to be Adam - how to protect himself, how to use his God-given strengths, and how what is going on with him is amazing! Ten to twenty years ago, he may not have been healed.  Now, every pill, injection, and poke is giving him super-hero powers to fight the blasts in his body.  

All of this is because I realized today that I do not want to be normal.  I met an amazing woman that God placed in our life to bring this message today.  Remember, I prayed (also Psalm 139), 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. When God calls us, He calls us to a different, simpler way of living. Putting his kingdom first (not to mention living in darkness and striving for normal is completely miserable) so that we can join the eternal family of God that has already gone ahead to glory!  Consider us called!