Mid-Week Update

UPDATE:

• Spence is in a new room! He's in room 510 and his phone number is 703-776-4510.  Apparently his old room is receiving a lot of phone calls for him still, so feel free to spread the news of his new digs around!
  
  I'm pleased to announce that Spencer's packing skills have improved over the years. This time he brought to the hospital all his electronic equipment, a few books, his blanket, 6 pairs of shorts, 8 t-shirts, 1 long sleeve shirt, 0 pairs of underwear, and 0 pairs of socks. How is that an improvement? Well it's at least a little better than the time when he was 6 or 7 when before going on a couple weeks long road trip, he loaded his bag with books, toys, and a couple random t-shirts.  

• Spence is on his second day of chemo.   

•  Dosages for the two types of chemo he's receiving  this round (ara-c and etoposide) are much higher than they've been previously and so it'll be extra important to try to keep Spence healthy.      Please stay far away from Spencer if you are sick at all!

• Glen and I visited Johns Hopkins hospital in Baltimore today.  We were hoping that the visit would help us solidify our leanings in the decision making process about whether to do a transplant, however we are now more confused than ever and are leaning exactly opposite of where we were yesterday.    Having said that though, we really, really liked the transplant doctor at Hopkins and thought it was cool that if we did proceed with transplant and if we chose Hopkins that Spence would be in a brand spanking new wing of the hospital.  Based on projected timing of a possible transplant he could even potentially be the first patient ever in a room. 

image from BaltimoreGrows.com

• (This is old news for those of you who are friends with me on Facebook.)
  The phone rang this morning and the caller ID read "Childhood Leukemia".  Thinking that it had the potential to be something important, I picked it up and was surprised when the lady went off on a random spiel about why I should  donate to support kids with leukemia, many of whom "may not live to see their next birthdays".   Although not normally much of a crier, especially in front of other people, I was really surprised when I bawled like a baby at the realization that my son was one of the poor pathetic children she was soliciting donations for.  I was shocked at how hard it hit me, but in the end felt more sorry for the poor random telemarketer who I am sure does not get paid enough to console sobbing mothers of children with leukemia. To preserve future mascara applications and my sanity (fleeting though it is), I have decided that I will avoid any future phone calls from cancer societies of any sort.

• In the way of much better phone calls, Spence got a phone call from a BYU football player today.  I forget his name, but they chatted for about 5 minutes or so. Thanks to Grandpa C. for arranging that!

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"The thermostat on the furnace of affliction will not have been set too high for us - though clearly we may think so at the time.  Our God is a refining God who has been tempering soul-steel for a very long time.  He knows when the right edge has been put upon our excellence and also when there is more in us than we have yet given."

                                                                                                  Neal A. Maxwell  (Thanks Desa!)

A Big Decision

The details of this post will probably be somewhat boring to most of you, but it was helpful for me to get it into writing for my own thought organizational processes and also to help loved ones better understand the decision we're facing. 

On Thursday Spence went in for his clinic visit before his bone marrow biopsy/spinal tap and the doctors were raving about how wonderfully Spencer was responding to treatment.  The doctor then told us that she had been discussing the specifics of Spencer's case with doctors at several other institutions and that the feedback was mixed about what treatment was best in his situation.  Although most of the institutions (including his own oncologist) still recommended proceeding with transplant, but because of how well he was responding to treatment, some of the institutions our doctor consulted with thought that the transplant was too risky and recommended finishing the chemo without the transplant.     Although we'd recently been nursing our own doubts about the transplant, we'd been going forward with plans trusting that medically this was the way we were supposed to go.  With this newly expressed uncertainty from the doctor, we found ourselves hurtled  into a complete conundrum as suddenly we weren't just faced with the choice of where to do the transplant, but also whether to do the transplant at all.

Since then we've been praying and immersing ourselves in medical research far over our heads to comprehend fully.  Our emotions have gone back and forth as we realize that there's no easy answer to the question.  Transplants are risky procedures with a somewhat significant mortality rate and a whole host of possible life-long scary side effects, but since they offer the best chance for a complete cure (60% without transplant, 75% with transplant), they are still recommended for intermediate risk patients like Spencer with an exact sibling match.  If he didn't have a sibling match they wouldn't even be talking about a transplant at all.    The drawback to not going forward with the transplant is that if the AML were to relapse,  it is more difficult to treat the second time around and would involve more hospital time, more chemo, and a transplant anyway.   Either way, we feel like gamblers who instead of making decisions about money, are determining the quality of our son's future life. 

Then Monday we took Spencer to the clinic before we expected him to be readmitted to the hospital.  There we were saddened and surprised when they told us that although Spencer was technically in remission (a loaded word that's not very meaningful with AML) after the first round of chemo, that his bone marrow results from Thursday showed some cells that looked suspicious.  They opted not to readmit him while they figured out what how this potential setback could change the treatment plan.  They sent Spencer over to the hospital for an echocardiogram to evaluate his heart function, since one of the chemos he's received has heart damage as a possible side effect and one of the new chemos they were considering using also lists it as a possible side effect.  They just needed to make sure that is heart is healthy before they start him on a new one that could potentially damage it.    We were definitely disappointed with this news. 

Then we went back to the clinic first thing this morning to discuss the echo results and the full lab reports from Thursday and we were told that after sending his bone marrow results to a few other institutions (National Children's Medical Center and University of Nebraska being the two that I remember), that the suspicious looking monocytes in his marrow were declared normal.   After breathing a HUGE sigh of relief, we learned that we're back to proceeding with the original treatment plan, which includes figuring out what to do about the transplant.    

Although standard US treatment protocol for AML does recommend the transplant in this case, it is clear that medical experts' opinions are widely varied on the subject and Spencer's oncologist has assured us that there is no right or wrong answer for this decision.    In fact in many parts of the world, including Europe,  the standard treatment plans for AML have recently changed to recommending transplants after first remissions to only the highest risk patients (of which Spencer is not).   

To say that the last few days have been a roller coaster of emotions would be an understatement. We are proceeding slowly and prayerfully, trying to understand the academics as much as we can, but more than anything, putting our trust in God that He will direct our paths in the best way for Spencer.  We appreciate all of the prayers and fasts our family and friends are offering in Spencer's behalf, and in our behalf as we make this decision.  We feel the power of those prayers and have the faith that the Lord will indeed direct our paths in this decision.


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UPDATE:

• We had a very fun bonus day with Spencer at home.  Pictures of our adventures will come soon.

• Spencer was readmitted to the hospital this morning and is in room 510 (a few doors closer to the entrance from his last room)!  Our new phone number is 703-776-4510. 

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I know I use this scripture all the time, but we feel like it is especially apt right now as we make this difficult decision:

"Trust in the LORD with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge him, and he shall direct thy paths. "

                                                                                        Proverbs 3:5-6

Top Ten of Being Home

A month ago I compiled a top-ten list of being in the hospital.  Now on our last night of being at home together for another month, I thought I'd compile a top-ten list of being at home. 

10--sleeping in the dark!  With the hall lights always on at the hospital, a dark room every night seems like a luxury!  

9--no beeping IV pumps!    Spence totally sleeps through them and while I'm getting better at stumbling to the nurse paging button with my eyes mostly closed, I definitely feel like I'm too old for this much interrupted sleep. 

8--Not a bit of hospital food in sight! Although not as horrible as the stories we'd heard, for someone who likes food as much as we do, it was sure nice eating home cooked food for a week straight!  Spence was especially excited to have freer access to his favorite lunch of all-time....Turkey Wafflewiches!


7-- Spencer (and the rest of us) getting to enjoy fresh air and sunshine during one of the most gorgeous weeks ever.  Spring has sprung in full force and made for some great outdoor time while he was home!

6--Exercising! I'd intended to do more of it while we were all home, but the exercise I did get was greatly enjoyed.    My body eagerly soaked up the bits of sunshine and opportunities to move!

5--Sleeping in our own beds!  Mattress pad on the hospital bed notwithstanding, there's still no place like our own bed. 

4--No stumbling out of the bathroom first thing in the morning to find a team of doctors directly outside the door.    The kids linger outside the bathroom door all the time, but somehow it doesn't  phase me like wondering if a roomful of physicians, med students, residents, and PA's could hear how full my bladder was. 

3--Spence being able to participate in some of teen social scene for a while.  Between the time he spent with his friends from school and church,   he ended up spending a good portion of his time at home hanging out with friends.  I daresay it was as therapeutic for him as it was fun. 

2--Going to church all together!  I loved looking down "our pew" (the one in the back left corner where we've been sitting in for years) and seeing the whole family in a row!  Spence even blessed the sacrament today, which completely melted my heart.  

1--Seeing all of the kids clamoring to hang out with Spencer.  Adam would sit at his side watching him play Scramble and would call out words or reach in and play a few himself.  Ellie just wanted to snuggle up next to him and engage him in conversation.  Emma wanted to chat with him about books.  And Cami stayed up late with him, made him treats, got caught up on tv shows with him, and just hung out with him every second she could.  

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UPDATE:

• Round 3 starts tomorrow.  We'll let you know what room he's in after he's officially readmitted. 

• Popular vote says that Glen is still taller than Spencer by a "hair". 

• We're taking a tour of Johns Hopkins this week. 

• Our family home evening lesson tonight was on being selfless and looking out for others.  It seemed apt in a time where people are showering us with service--big and small, that we would try to fill our lives with gratitude and seek for little ways that we can reach out to others right now.  

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Faithfully
Acknowledging
I
Trust
Him

(acronym from Kim B.  Thanks!)

You Tell Me...

Who's the taller of the two baldies in our house?

Glen still thinks he's got the victor's crown,  but I'm thinking it's too close to call. 

What do you think?

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UPDATE:

Spence's ANC is now over 2000, which is a great recovery of his blood counts. 

Round 3 of chemo officially starts on Monday.

Feel free to pray for us as we make some heavy duty, life and death decisions in the next week or two.   Additionally, any transplant recipients out there who want to get in touch with us, we're welcoming all of the advice we can get right now. 

Other than getting pinched by a teen son of ours at approximately one minute past midnight, we had a very fun Saint Patty's Day today.  Glen, Cami, and Spencer helped with a big service project/fundraiser at the church, while the younger kids and I did Saturday chores and played in the neighborhood creek.  Friends brought us some fun surprises and we got to eat a yummy green dinner from the Woodhouses!

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"When everything seems to be going against you, remember that the airplane takes off against the wind, not with it."
                                                                                                                                                - Henry Ford (Thanks Lisa E.)

Lara vs. Leukemia in the Form of a Zucchini

I Love My Boys....

even if they do shoot me evil eyes every time I pull out the camera! (Spence proudly admits to the fact that he's taught Adam everything he knows about picture avoidance/giving mom dirty looks). 

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UPDATE:

We are trying to usurp every moment of togetherness we can find while Spencer is at home.  We even pulled the kids out of school a little early today to have some family portraits taken! 

Unfortunately it looks like this stomach bug is making its rounds.  Glen is mostly better, but as of tonight Cami's down for the count, and Spence is on the edge.  Ugh! 

Tomorrow Spence will have his bone marrow biopsy/spinal tap done as an outpatient, then the plan is that he will be readmitted to the hospital for Round 3 on Monday. 


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I need new quotes.  Feel free to shower me with good ones at goolds@verizon.net. 

Good, Better, Best, and "Bestest" News!

Good News: Yesterday I was interviewed on a mid-morning radio show based in Fort Wayne, Indiana.  Bekah, one of the show's hosts, apparently is a fan of Recipe Shoebox (my recipe blog) and invited me to be a part of their show on blogging.  For the few minutes that the interview lasted, we chatted about how the blog came to be and I in turn answered a few other blogging questions the hosts posed to me. My interview was followed by interviews with four other bloggers, who, based on a few comments I got, are some big-time, real-deal, famous bloggers, who are much more widely known than little old me with a few hundred followers compared to their tens of thousands.     

Not that I care or anything!   I was thrilled for the opportunity and found it a pleasant distraction in amongst the craziness we currently call our life.  After the interview was all done I even overcame my deep-seated hatred of hearing my own voice and listened to the interview replayed.   Only one time though. I heard enough to know that there were a few instances where my nervousness audibly came through in my voice and that I rambled a bit in a couple of places, but I could also hear that I didn't flub it anything like I had in the nightmares I'd had the night before.  I didn't freeze, I didn't have a coughing fit, and I definitely didn't start shouting insults at the hosts.  Whew! 

Listen to my interview here.

  
Better News: Spencer has been approved  and the Make-a-Wish foundation is going to grant him a wish!  He's not sure what he wants to wish for yet, but he's leaning towards a fun trip somewhere.   I'm very impressed with the Make-a-Wish foundation and am in awe at all the good they do in sharing joy and giving hope to sick kids.  See here for how you can help grant wishes. 

Best News: Spence's ANC was up again and the doctors discharged him from the hospital yesterday!  We had expected it to be sometime this week, but, like last time, were surprised at the pace at which it happened.  We are THRILLED beyond belief to be back together under one roof again! 

"Bestest" News of All: Yesterday we had a new nephew  born! Glen's sister, Lara, (yes, she has an awesome name) just gave birth to her first baby, a little boy named Caleb! Having him was a long journey for Lara and Brett and we're thrilled for them as they enter this new and exciting stage of their lives.  (PS  We're still eagerly awaiting photos of the little guy). 

Bit of Bad News: Glen celebrated being back home by coming down with a knock-ya-flat-on-your-back-icky-stomach-bug!   Here's hoping that the bug stays far away from the rest of the family, especially Spence and Ellie!   Spence for obvious reasons and Ellie because her and stomach bugs do not mix well.  Ugh, I have nightmares just thinking about it!

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"The best things in life aren't things."
 - Art Buchwald

Trusting the Lord

"Trust in the LORD with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge him, and he shall direct thy paths." 

As a teenager, this verse in Proverbs became one of the first scriptures that really resonated with me.   I don't remember what teenage stress I was going through at the time, but whatever it was, this verse brought me comfort and hope that there was a higher plan at play.  

Since then, I have not only committed the words of the verse to my own memory, but I've also taught it to my children from a young age.  Although most of them can recite it word-for-word, I'm not sure that it really means much to them at this point of their lives.  In fact, although I've considered the verse to be somewhat of an unofficial mantra for my own life, I truly didn't fully grasp the meaning of it myself until the last couple of months. 

It's one thing to be able to say that I trust in the Lord and his plan when life is relatively uneventful and the hard things are mostly happening to other people. But when those paths involve  your family life being turned upside down and watching your child endure painful treatments for a life-threatening illness, suddenly trusting the Lord  and letting him direct our paths seems a lot harder.  As much as my heart wants to trust, it's hard to make my brain understand why Spencer and our family have been set on this new path filled with heartache, fear, and pain.    While that old path seemed tedious at times, I've found myself longing for it more and more lately. 

Then I wonder... what if God had left us on that old path? 

Although I'm sure I would be a lot less tired than I am, I also surely wouldn't know the depth of my compassion for Glen.  We've been like two stars passing in the night lately and although it's achingly lonely sometimes, my love for him has deepened as we've struggled separately, but together to try to keep our family strong.

Nor would we know the extent of the generous and loving community that surrounds us.  We literally have been flooded with kindness, meals, gifts, notes, conversations and acts of service from the beginning moments in this journey and that outpouring of love has touched the depths of our soul in a way that we will never forget.   

Nor would I have an inkling of the comfort we would feel as we hear of children, loved ones,  and people we barely know all over the world praying for our son and our family to be buoyed up.  The power of those prayers sustain us through our most difficult days. 

Nor would we have known the strength of the ties that bind families together.  Cousins, uncles, aunts, grandparents, sisters, and brothers all binding together for one cause is a powerful force and them reaching out in love has meant the world to us. 

Nor would  I ever have known the strength, maturity, and uncomplaining optimism that our sixteen-year-old son possesses.  We seriously had no idea.   

Lastly, if we had not been put on this new path I would not understand the solace I would find in God's plan and in his restored gospel.


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UPDATE:

His ANC is rising (about 160) and we are hopeful that he may be able to come home for a few days this week. 

In the meantime, Spencer has become one of  the nurses' easiest patients.  He still needs antibiotics and vitals a few times a day, but otherwise spends most of his time  unhooked from the IV tower. 

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We will go forward, trusting in the Lord with all our hearts; and leaning not unto our own limited understanding.  In all ways we will try to turn to him in good times as well as the challenges in our lives, and he shall continue to direct our paths and bless and comfort us every step of the way. 

Seussically Speaking...

Oh me!  Oh my!  What a lot of funny hair goes by!   My goodness!  My gracious!   I SWEAR!  This is something brand new!   IT’S A MOUNTAIN OF HAIR!!  It's sticking straight up, with a bow up on tippy-top.  No wires, no hair spray, it just sort of pops!

Wait!  Look at me!  Look at me!  Look at me now!   A trifecta of braids all tied into knots.  It's lovely, it's wacky, and it just hits the spots!  Together we sisters have fun!  Way more fun that if we had our hair in a bun! 

Maybe Dr. Seuss week at school, doesn’t come from a store. Maybe Seuss week…perhaps…means a little bit more!  It's wearing crazy, mismatching clothes with hair that is wild.  And when that seems a bit too mild....perhaps dressing up as the cat in the hat!  No need to get pressed or dressed into your best.   When your jammies are striped red and white, white and red, you can just roll out of bed! 

Have no fear, little friends, their jammies are good jammies.  Comfy and cozy and perfect for school!  Except for Adam. His jammies are not red and white, so he needed a hat to make his costume just right!  I do so like tall hats that are striped, so thank you to Grandma Sandy, who gave him the hat that was much hyped!  The hat was liked here.  The hat was liked there.  That hat was liked everywhere! 

I meant what I said and I said what I meant...this blog post is goofy 100 percent!

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UPDATE: 
ANC is still hanging out at zero for the fifth day!  The rest of his blood levels-- hemoglobin (10.3) , hematocrit (29.9), platelets  (134)--are increasing nicely, but white blood cells, red blood cells, and neutrophils are still low.

Glen's kitchen skills may have just passed my own!  At the hospital last night, Glen made a Butterfinger blizzard for Spencer--without a blender.  Spence said it was better than Dairy Queen's.

Spence has been assigned a bunch of his favorite nurses lately.  Hospital time is so much more pleasant for him with a fun and social nurse!

Today I went running, walked the kids to school, cleaned, answered emails, did laundry, went to Costco, and Trader Joes all before coming to the hospital for the night.   For a few hours, life seemed almost normal again and I liked it.


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"It's a troublesome world. All the people who're in it are troubled with troubles almost every minute. You ought to be thankful, a whole heaping lot, for the places and people you're lucky you're not."

                                                                                                                                        ~Dr. Seuss
 

Boring Room?

UPDATE: 

• Spencer's ANC is still 0 and the docs informed us today that each round tends to get a little longer and that we shouldn't count on his counts rebounding as quickly as last time.  :(

• The appetite stimulant (that is related to marijuana, but apparently is not addictive and not a narcotic) is not working yet.  He's still eating okay, but it's definitely not the kind of munchiness they told us it would cause.  His weight is 56.5 kg.

• We took our trip to National Children's Medical Center today.  It's a longish drive in a somewhat unpleasant part of DC, the parking was insane, and the hospital hugely busy and imposing....but  members of the BMT team  spent over 3 hours with us, including a tour of the BMT unit.   It was comforting and disconcerting at the same time to hear everything about bone marrow transplants laid out before us like this, but we do feel like the care there will be good.  We still plan on touring another hospital or two, but pending anything earth shatteringly different at the other hospitals, we'll most likely stay at Children's just to stay close to home. 

• Spence got a packet of cards/letters from the Primary kids in our ward and this is one that made us smile...

Except Spence isn't quite sure what she means about being without his family, since he's had either a parent or aunt in his room almost every moment of the last 2 months...  :) 

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All the adversity I've had in my life, all my troubles and 
obstacles, have strengthened me... You may not realize it 
when it happens, but a kick in the teeth may be the best 
thing in the world for you.
 
- Walt Disney

Thoughts on Being Strong...

What does being strong even mean? 

I used to think that being strong meant dealing with problems with as little help as possible.    As I've aged though, I see that true strength is so much more than that.  True strength is meeting your problems head-on,  relying on God, accepting the help you need, and putting one foot in front of the other day-after-day-after-day-after-crappy-day....through the pain, the tears, and the heartache.  Although putting one foot in front of the other isn't all that glamorous, and certainly doesn't feel like flexing our strength, but it's what propels us forward. 

I've heard the well-meaning phrase, "You're so strong," spoken to me countless times since Spencer's diagnosis and yet even after nearly 2 months, I still never know quite what to say in response.    Denying it or trying to express how I feel about it, usually ends up in an embarrassing stumble on words.  Giving credit to God or our magnificent support system is apt, but usually a little heavy for these conversations, which often occur in fleeting moments.   So usually I simply say,  "Thank you,"  blush a little, and wish that I was better at verbally expressing what is in my heart.   

Our family's current bout with adversity is of the very public life-and-death sort, but I see people all around me struggling just as mightily as us with their more garden variety trials.  I don't use the term "garden variety" to diminish the impact those trials have on their lives, but rather that what they are going through is perhaps less noted by the outside world than a child having cancer.    I have friends with young children whose husbands are deployed overseas for several months at a time.  And others that struggle with crippling anxiety or depression.  I know people who have their own chronic health issues, where they wake up each day and hope that today is a day they feel okay.  And others who are raising kids with time-consuming special needs.  Still other friends are struggling with their marriages.  And others are still healing from past hurts.   These struggles may be lesser known or sometimes completely hidden from other people,  but I believe require every bit the day-to-day mettle to overcome.  Maybe even more so, because they may be facing their own living hells in a much lonelier fashion than we are. 

Not to oversimplify the trials of life, but I firmly believe that God will not ever heap upon us more than we can bear and we know we are strong enough to endure simply because we're facing it.   

What is strength?  Strength is inside of each of us.

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UPDATE:  

• Spence has been prescribed an appetite stimulant to try to get him to beef up while he's feeling good.  Weirdly, they had to check and make sure he wasn't allergic to marijuana before giving it to him.  

• ANC is still 0, but, like yesterday, other aspects of the blood are moving in the right direction!  If all goes well, we're hoping for a trip home sometime next week!  

• We're touring the National Children's Medical Center's transplant wing tomorrow. 

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"It is often in the trial of adversity that we learn those most critical lessons that form our character and shape our destiny."
                                                                                                                               --Dieter F. Uchtdorf

Leukemia in Pictures

                    Before:    The shag                                                       After: Bald is beautiful

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Before:  Will I sleep through my 5:00am alarm?    

After:  The IV's beeping for the fourth time tonight?!  

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Before:  cell phone with no data plan and one computer to share among 7 people

After:  latest and greatest technology at his fingertips 24/7

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Before:  I have a huge test tomorrow...maybe I should study. 

After:  Hmmmm....should I play Words with Friends or Scramble with Friends today?  (By the way his user name is "lsattack" if you want to challenge him.  Beware though, he's pretty good at both of them.)

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Before:  Can I go hang out with my friends as long as I'm back by midnight?   

After:  Can I stay awake the whole time my friends are visiting me? 

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Before:  Should I take a test prep class before taking the ACT and SAT?

After:  Will I be able to graduate with my class next year? 

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Before:  Will I make the varsity lacrosse team this year?

After: How many laps can I do around the hem/onc floor today? 

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 Before:  Pizza or burgers?
                      
After:  Platelets or blood? 

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                Before:  Beach bod                                       After:  Shower bod

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UPDATE

His ANC is still zero, but his blood is starting to form monocytes which docs say is indicative of counts going up soon.  He'll be able to go home as soon as his counts are around 250 and trending steadily upward. 

Other than not sleeping the greatest, he is still feeling pretty well.  :)

I've been informed that I should apologize in advance if any girls bump their heads while swooning at the second-to-last photo.   Sorry. 

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"One of the secrets of life is to make stepping 
stones out of stumbling blocks."
                                                                                   - Jack Penn

Blood + Kytril + Darth Vader = A Much Happier Spencer

After feeling cruddy for a week-and-a-half straight, Spencer is happy to announce that he's finally getting his groove back!  I'm not sure if it was the 2 units of blood they finally gave him yesterday.   Or the new 12-hour anti-nausea pill, Kytril, they gave him as a last resort when he wouldn't keep anything down.   Or maybe it was the surprise visit from Darth Vader to the hospital courtyard.   

Whatever it was, Spence is back to joking with the nurses, scarfing down food (and keeping it down), not falling asleep on his visitors, showing off his card tricks, and even giving his sister a few lacrosse pointers in the hospital courtyard. 

Darth Vader, Captain Rex (from the Star Wars cartoon), and the storm trooper came to help one of the young hem/onc patients celebrate his birthday.   Ellie was a little nervous about them, but eventually decided that the little storm trooper, who wasn't that much bigger than she was, was okay to talk to. 

Later they came around and visited all the patients in their rooms.  They said (in very non-Star Wars sounding voices)  that the vast majority of the kids they'd visited had no clue who they were.  Spence, of course, knew exactly who they were supposed to be, but still wanted nothing to do with posing for pictures with them. 

Which is why I employed a little motherly bribing to get this one. 

I've got to have at least an occasional photo of him not sleeping....for prosperity's sake!

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Random Star Wars Memory:  Star Wars Episode 2 came out right around Spencer's  birthday one year and serendipitously for us, at the same time boxes of General Mills cereals featured free tickets to the theater on them.  Being the cheapskates we were, we thought that we would make Spence's  birthday party super cool and take his friends to see Star Wars at the movie theater.  We stocked up on cereal, cut off the coupons, and traipsed Spence and about 10 boys to the theater.  Since we hadn't spent a cent on the tickets, we thought we'd buy the boys their own drinks and some popcorn to share (a treat our own kids rarely enjoy).  Too bad for us that we didn't think ahead about the fact that:

20-oz. cups of soda + young boy pea-sized bladders = peeing every 15 minutes

  To this day, when I think of Star Wars, I think of traipsing boys back and forth to movie theater bathrooms.

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UPDATE:

• Spence's hemoglobin never got below 7, the number at which doctors would automatically transfuse him, but since he was so fatigued the last few days they went ahead and gave him 2 units of blood yesterday.    Afterward, he was far happier and had more energy than he'd had in days.  Next time  I plan to request him to be transfused before he gets that worn out. 

• He received another platelet transfusion today after his platelet counts got down to 10.   Luckily he wasn't randomly bleeding like he did last time his platelets were that low. 

• His blood counts finally hit bottom today!  (yesterday's ANC=~35, today's ANC=0 )  It's expected to stay at zero for a few days before creeping back up to a point at which we can hopefully take him home for a little while again (maybe in about 10 days or so)! 

• Eating food and keeping it inside of him, helped Spence to regain some of the weight he'd lost.  (Weight yesterday=55.2 kg.  (121.5 lbs.),     Weight today=56.2 kg (124 lbs.))

• I'm quite impressed with the new anti-nausea medication (Kytril) they're giving him.  It's far more effective than any other he's gotten and it doesn't knock him out like the Ativan does. 

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Spencer's Facebook status in honor of Dr. Seuss' birthday: 

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!"  
                                                                                                                            ~Dr. Seuss~

Bleh!

Quick!  Name all the lousy side effects from chemo you've ever heard of before:

Hair loss--✔
Extreme fatigue--✔
Nausea/Vomiting--✔
Weakness--✔
Low blood counts--✔
Bleeding (from low platelets)--✔
Diarrhea--✔
Irritability--✔

There's actually a gazillion more possible side effects that could be on this list (but thankfully aren't), but suffice it to say Spence has had better weeks.   Just as he was really starting to feel better after his surprise appendectomy, the irritability and fatigue set in with a vengeance.  Now he has a nasty case of nausea and is throwing up everything he eats.  The powerful anti-nausea medication they give him (Ativan) knocks him out flat, which means that lately he's been too pooped to read, play Words with Friends, or even watch tv, let alone do homework. 

On the bright side, his favorite nurse just got back from vacation!

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"God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way".
                                                                                                                                                                                                 Author Unknown