Tuesday, March 13, 2012

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! 

  
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

Monday, March 12, 2012

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. 

Friday, March 9, 2012

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
 




Wednesday, March 7, 2012

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...  :) 

                                                 *******************************

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



Tuesday, March 6, 2012

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.

 *************************************

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

Monday, March 5, 2012

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.)



*****************************************


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? 

*****************************************

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


*****************************************
                Before:  Beach bod                                       After:  Shower bod


**********************************

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

Saturday, March 3, 2012

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.

**********************************

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. 

**********************************

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~

Thursday, March 1, 2012

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

Wednesday, February 29, 2012

Music Therapy

Caveat Lector (Reader Beware) - This post is being authored by Lara's husband, Glen.  Since Lara started this blog on April 14, 2007, she has encouraged me many times to be a guest poster.  Now nearly 5 years later, I am making my debut.  I completely understand if you read no further!!!

I love Lara's blog.  It makes laugh, it makes me cry, but mostly, it chronicles our life together and I treasure the blessing it is to read over past posts and reflect on our experiences.  I hope my "butting in" will not detract from the good she does through her creativity and insight she puts into every post she makes.

So for my maiden post, I wanted to talk about the influence of music in the lives of the Goolds.  Music has always played a huge part in my life.  I attribute my love of music to my mother, Sandy.  Mom is a beautiful singer.  She encouraged me and all of my siblings to learn the beauty of music at a young age.  She battled five boys and one girl through piano lessons hoping to instill her love of music to us.  I still tinker on the piano, but my love of music started at that very young age and still influences me deeply.


One of the ways mom helped us cultivate a passion for music was to give us the opportunity to experience the theater.  I remember being very young when mom and dad treated our family to a live performance of "Annie" in Denver.  Certainly hearing a live performance of "Tomorrow" was captivating enough, but I was then, and still am today, taken with the song "Maybe".  My love of music quickly extended to a love of the theater.  We would often have the opportunity to catch a show at the Playmill in West Yellowstone where seeing the likes of Fiddler on the Roof, Joseph and His Amazing Technicolor Dreamcoat, Seven Brides for Seven Brothers, etc.  So it was that my passion for theater and music in general was born.

One of the ancillary blessings from my two year church mission to London was the opportunity to see some of the best theater in the world on the West End.  In particular, every year for our mission's "Christmas present" the mission president would hire out the entire balcony of the Palace Theatre and all 200+ of us missionaries would pile in to be treated to a performance of Les Miserables.  It was an unforgettable experience that touched our souls in a meaningful way and  I will forever be endeared  to the touching story of Jean val Jean.    Since then I have been fortunate enough to share Les Miserables with my wife and children, who I'm happy to say have fallen right in step with a love for music and the theater and for Les Mis in particular.    

So in the recent weeks, whenever I am feeling down and need a boost, one of the things I turn to is my music.  Music has always served as a sort of  "security blanket" to me, but in all that the last several weeks have brought us, music has been nothing short of therapeutic for my soul   A couple of days ago, I was having a long, lonely night in a stream of lonely nights lately, and I turned on the 25th Anniversary performance of Les Miserables and found some solace in the music as well as in the memories!

Jean val Jean singing, "Bring Him Home" has always been the highlight of the show for me and that song in particular has held many contexts for me through the years.   Its meaning sinks deep in my heart, instills memories, and conjures emotions of the best things.  My mom sang it for my mission farewell (with a few artistic license edits) as she and my dad sent me off on my mission all those years ago.  Then, the memories of sitting with my fellow missionaries on the balcony of the theater listening to "Bring Him Home" will forever be etched in my heart.

 So it is that I wanted to add yet another context in the annals of my fond memories of the emotions the song "Bring Him Home" has blessed me with over the years.  With this post, I offer this prayer for my son, Spencer:   

We truly can't wait to bring him home. 

------------------

UPDATE (from Lara): 
  • Spence is completely exhausted.    He slept almost 12 hours overnight, then took several naps through the day.  We turned away his tutor, kept the visitors away, and let the poor kid sleep.  His blood counts are low, but not exceptionally low, so I guess it's just his body just fighting extra hard right now. 
  • Pain wise he's doing much better since his surgery.  Today was the first day that he didn't grimace every time he moved, so they weaned him completely from the morphine. 
  • As the nurses come in for their shifts and find out about Spencer's appendicitis, they are all shocked.  None of them had ever heard of a cancer patient being afflicted with appendicitis during treatment. 
  • PLEASE call before coming to visit.  Between his grumpiness,  fatigue and the low blood counts, it's just a good idea to check with us first before coming and if you do come, PLEASE plan on making it a shorter visit.  We are not discouraging people from coming,  but because we want visiting Spence to be as pleasant for everyone as possible, it's just a good idea to check with us first.  703-776-4513    Thank you for being understanding!

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"For my soul delighteth in the song of the heart; yea, the song of the righteous is a prayer unto me, and it shall be answered with a blessing upon their heads."
- Doctrine and Covenants 25:12



Tuesday, February 28, 2012

Living on the Wild Side

 Although I'm normally someone who likes to plan things in advance,  I've always loved the thrill of waking up with a fun idea for something to do, then making it happen with little to no pre-planning.   I guess you could call it my wild side.  Of course having a child in the hospital for weeks on end does not lend itself very well to either spontaneity, living wild,  or even day trips in general. 

  So it was fun to wake up on President's Day and realize that the kids were off school, the weather was gorgeous, and I was at home!  It was too perfect not to go out for a spontaneous fun day on the town.   

A couple hours later we were at the National Zoo with Ellie, Adam, Emma,  my 2 sisters and our friends, the Tapps.    It turned out to be four adults and five kids...a very nice adult to kid ratio. 

After polling the crew, it was determined that the main objectives of the day were to see the elephants, the pandas, and the bird house (and everything in between)....

We weren't in a hurry,  so we decided to go at the kids' pace, which at times was painfully slow.

In the end the slow pace turned out to be refreshing and I found it fun to explore the zoo on a chilly day (relatively speaking), because the animals were actually awake and active, a far cry from the lazy animals we see in the summertime...

Eventually we did find the elephants...
and the birds...

but the panda bears were hiding, so this statue became the next best thing....

And this is a little off topic from zoo animals, but since I have this picture with Sue and I from the zoo that day, I just have to add in how wonderful it is to have a friend like Sue.  Little did the Tapps know when they moved around the corner from us several months ago, what high maintenance neighbors we were going to be, but man, I have to say that it is a HUGE blessing having them live so close.  In addition to accompanying us on spontaneous trips to the zoo, Sue saves our hides at least weekly, gives our kids rides, picks up things at the store for us, as well as helping me maintain my sanity by going on long walks a couple times a week (or whenever we can) with me. 
And at the end of the day, Spence actually expressed a little disappointment about not being able to come with us to the zoo.  I guess that means he's been in the hospital for a long time, because he's been avoiding our zoo trips for years now.  :)


                                      *******************************************

UPDATE:
  •  Last round of chemo he was receiving  twice-weekly spinal taps, so in order to make sure his blood was strong enough for the procedures they transfused him with platelets whenever his counts got to 30.  He's not getting the frequent spinal taps anymore, so yesterday his platelet counts were the lowest they had ever been before (10).   Normal platelet levels are over 140. 
  • Platelets are instrumental in helping the blood to clot.  With his very low counts, his mouth was bleeding a lot (without any pain) yesterday and he had the petechiae rash in several places.  (Petechiae is a reddish, painless pinpoint rash that is caused by burst capillaries due to low platelets and is ofttimes a symptom of leukemia that brings people to the doctor in the first place).  
  • With the low counts and the symptoms, they did transfuse him with platelets yesterday, which thankfully has helped with the random bleeding. 
  • Like with the platelets, because he's not having the frequent spinal taps that required his blood to be kept at a higher level, his blood counts are lower than they've ever been.   Basically that means that he's tired, pale, and grumpy as can be.  I apologize in his behalf if you've visited the last couple of days and found him less than sociable. 
  • His entire body is uncomfortably itchy right now.  Apparently it's a common side effect of morphine, which he has been taking for his post-appendectomy pain.  Thankfully they are in process of weaning him from it now and we are hopeful that the itchiness goes away with the morphine.   
  • Despite all of that, Spencer actually is feeling better after his surgery.  His pain is lessened, he's moving around more, and if it weren't for the low blood counts and itchiness he'd probably be doing just fine. 

    His ANC is about 50 today, which means he's almost bottomed out and if you're sick in the slightest you should stay away. 
  • I've started calling around to bone marrow transplant centers to see if we could schedule a visit for a tour and visit with the doctors.  Most people in our area end up at National Children's Medical Center in DC (30-45 minutes away), Johns Hopkins Children's Center in Baltimore (a little over an hour away), Children's Hospital of Philadelphia (a little over 2 hours away), or Duke University Hospital (3-4 hours away).   We're still leaning towards the National Children's Medical Center, just for proximity's sake and making it easier for our family, but we feel like we need to explore all of our options before making a final decision. 


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"Stresses in our lives come regardless of our circumstances. We must deal with them the best we can. But we should not let them get in the way of what is most important-and what is most important almost always involves the people around us. Often we assume that they must know how much we love them. But we should never assume; we should let them know. Wrote William Shakespeare, "They do not love that do not show their love."  We will never regret the kind words spoken or the affection shown. Rather, our regrets will come if such things are omitted from our relationships with those who mean the most to us."
--Thomas S. Monson
 


Homeschooling FAQ's

Over the last few years, I've had a lot of people ask me about our decision to homeschool our children for 8th grade.  It's a rather drastic choice and while most people have been supportive, it's also somewhat controversial.   Of course we did not endeavor into such a decision without a lot of research and prayer and over the course of the last few years we have felt very inspired that it is the right thing for our family.  Recently a friend of mine asked me some specific questions to help her as she decides whether to homeschool her own daughter for 8th grade and since  other people have been asking as well, I thought I'd compile a list of the things that I've been asked most frequently:  

 
Why 8th grade?

For a number of reasons, we felt like if we were only going to homeschool the kids for one year, then the eighth grade year was ideal.  My first main reason for this decision is that for the most part the year is off their high school record, so that I don't have to explain the holes in their transcript (see exception below) when they're applying to college.   Secondly, we felt like it was their one last year before heading off to the crazy world of high school, and we wanted to give them every opportunity to strengthen themselves within the walls of our home before then.  Lastly, both Spence and Cami had gone to their seventh grade year at middle school before homeschooling for 8th grade, and frankly for various reasons both of them were very excited to have a year "out of the system".   While neither one of them had had bad experiences, neither one of them were such fans of the middle school garbage that goes on either.  And that brings me to my last big reason...middle school is kind of  a yucky, transitional time in many kids' lives and once again, we felt that a year of a positive strengthening experiences in our home was infinitely better than the negative environment of a middle school. 

 Many people we've met in our homeschooling ventures, homeschool for all of middle school.   With our younger kids at home, we didn't feel like that was the right thing for our family, but now that my baby is in school, I may consider that for the future (if the younger kids are game for it). 

Doesn't the middle school need their positive influence?

Of course it does, BUT not at the detriment of tearing my kids down along with them.  Once again, we absolutely felt strongly that bringing them home for a year was  exactly the preparation they needed to be the best positive influences possible going forward into their high school years and beyond. 

My child doesn't want to homeschool, but I think it would be best.
I personally do not feel like it would be a very successful experience if your child is resistant to being homeschooled, even for just one year.  My advice is to suggest homeschooling as a possibility for a year or two in advance of when you're considering it, then take opportunities to regularly point out the fun advantages that homeschooling will offer them (field trips, no late night homework, etc). 

In addition, to increase their excitement level of staying home for a year, we also promised our kids a fun trip sometime during the year....a special trip that they wouldn't be able to do if they were in school.   Spencer went on a trip with my parents to the the Pacific Northwest through Seattle and into Canada.  Cami is heading to Denver in a couple of weeks with Glen...to visit his family and hopefully to catch  BYU in the basketball playoffs there.  

If despite your advance preparation and promise of something exciting, they are still resistant, then I would strongly advise you to reconsider your thought to homeschool.  Having a sullen, unhappy teenager at home for a year could be a very trying experience for both of you that may sabotage your efforts in strengthening them for the future.  If, however, you absolutely feel that it is the right thing to do despite their resistance, then I would plan on a month or two of decompressing and working on your relationship. 

I'm too busy, I'm not sure I can make it work.
I figure everything that keeps me busy...my church callings, PTA responsibilities, Ellie's health issues, etc....would be consuming my day regardless of whether I was homeschooling or not.  But if Cami were at school, my time with her would be short and rushed.   With her at home, in addition to her academic studies, she also gets some Real Life 101. 

My advice is to take a deep breath and be prepared to prioritize.  First off, while some people may argue with me, I do not feel like homeschooling should be designed to be just like a school day where they are trying to cram six subjects in a day, while you stressfully try to keep up with everything they're doing.  I firmly believe that one of the beauties of homeschooling is flexibility.  Math is something that needs to be done every day, or it can easily get away from you, but in my opinion, there is room for much flexibility in all the other subjects. 

When you think of all the down-time in a day of school...going from class to class, the teacher disciplining other students, taking attendance, the teacher answering questions that your child already understands...the actual amount of time spent learning is not that impressive.  I feel like Cami spending an hour-and-a-half doing her online, interactive science class geared to her specifically is every bit as effective (or more so) than 2-3 hour-and-a-half blocks of science per week at school. 

What about curriculum? 
There are a million things out there, but my strong suggestion is to not feel like you need to recreate the academic environment of school at home.  Take advantage of being at home and make it fun!  Math is math, but every other subject can be made exciting and interesting for both of you.  I won't go into great detail here (call or email if you have specific questions), but here are a few basic things to keep in mind. 

  1.  Homeschooling is not free or cheap, especially for teenagers.  You want them to have quality materials and exposure to uplifting ideals and you should expect it to be about as expensive as sending them to a cheap private school....but with a much more loving, committed teacher!  :)

  2.  I know I'm repeating myself now, but do NOT try to recreate school at home.  It will be too draining for both of you and will likely not be the fun, bonding year you're hoping to have.   Except for math, it is absolutely not necessary that they learn exactly what they would have had they been at school. 

  3.  Contact your high school and find out if there will be any potential conflicts with homeschooling for 8th grade.   Especially, discuss math, since many kids are taking high school level math by 8th grade.  Our high school needed to see Spence's Algebra work, in order for him to sign up for Algebra 2.  For this reason and because I was much more intimidated by teaching Geometry, we signed Cami up for a Geometry class at a local private homeschooling "school".  I liked that she was being taught by someone more knowledgeable than me and I appreciated that she would have a grade and plenty of proof (and proofs) to show the school.  

  4.  Network!  Before you even start homeschooling, find a local LDS homeschooling group, get on their email list, and start participating in their social activities.  As you go along, you will most likely discover amazing moms who teach classes to other homeschoolers.  My kids have participated in Shakespeare, Statesman, and cooking classes this way.  It's great for them socially, good for you to have someone to bounce ideas off of,  and also great for supplementing the curriculum. 

  5.  In order to ensure that their homeschooling day doesn't dissolve into time wasting, we make the hours that they would normally be at school (8-3) a time set aside for their development....without TV, computer, or sometimes even pleasure reading since I have a few bookworms.   It doesn't necessarily that that block of time is super structured the whole time, but I want them to understand that their time at home is meant for  their strengthening and development, not to have extra time to waste. 

What are some of the coolest parts about homeschooling?
This list could be a mile long, but here are a few of my favorites:

  Low stress.  No more staying up until the wee hours trying to get a project done.  With even a somewhat concerted effort, they can easily complete all their work in a couple of hours each day, leaving the rest of the day open for developing talents, friendships, reading, helping around the house, exercising, etc. 

  Developing talents:
  This is one of my favorite parts about homeschooling...the opportunity to explore their talents like music, cooking, sewing, etc. in much greater depth than they could if they were bogged down with a full day of school and the ensuing homework. 

  Working on goals: 
Along the same lines as the previous  one, when their school work is all done in the first few hours of the day, guess who has plenty of time to work on Personal Progress, merit badges for Scouts, and any other goals they have set for themselves?  No more excuses! 

  Specific training:  You really want to teach them about how to balance a checkbook or make and keep a budget or learn how to plan a well-rounded menu and haven't had time yet?  Homeschooling provides the perfect opportunity to sneak in teaching about all those practical skills you've been meaning to teach them, but struggle to find the time for during the school year. 

  Family relationships strengthened:  I love to see the special bond my 8th graders develop with their younger siblings during this time at home.  The bond is not only between them and any preschoolers that happen to be home with them, but because their lives are less stressful and jam packed than previously, they also have more to give to their other siblings as well.  It really has been a wonderful blessing to our whole family. 

In addition, there's also the bond between parent/child that invariably is strengthened as well.  Part of it's just the sheer quantity of time spent together, but it's also the special little things that we do together through the year...the Friday lunches out, the inside jokes, the shared dinner preparations, and the fun shared experiences. 

What are some of the disadvantages of homeschooling for a year?
 
Probably the hardest part of it for me is the lifestyle change that it entails.  I was used to having preschoolers around all day, but it's totally different dynamics with a teenager in the house.  In many aspects it's easier than having a preschooler, because they can be left alone for a time, they're a little more self-motivated than a preschooler, and don't need to be entertained all day.  On the other hand, teenagers don't take naps or go on playdates and it sometimes can be draining to have them there all the time.  On the flip side, it could be just as challenging, if not more so, for the teenager who is suddenly at home all the time.  I suggest finding social groups and classes to get the involved in, for your sanity and theirs.  

What about sports?
Our district does not offer middle school sports anyway, so this was not an issue for us.  We just had them participate in the community sports' leagues. 

What would you change?

Not much....maybe go on more field trips and be better organized. 

Any last words of wisdom? 

Be prayerful, be prepared,  be flexible, and have fun! 

Sunday, February 26, 2012

Gratitude

In honor of Spence's 40th night in the hospital, I thought I'd spotlight some of the things I've been most grateful for lately:

...the moments, however short they are, that I get to spend with my sweetheart. 

...for kind and thoughtful friends who listen to me ramble, bring us delicious home cooked meals, shower us with kindness and generosity, and even mend Spencer's "special blankey" for him (Thanks, Cindy!). 
...for nurses who stop in to chat with Spencer, even though he's not assigned as their patient that day.  It always makes Spencer's day!


...for a Sunday afternoon walk with the kids down to the stream in our neighborhood.  Ellie was well-prepared with a blanket, basket, stuffed animal, and a hand colored soccer ball
...for another Sunday night at the hospital all together as a family.   We sang songs and had family home evening together--our lesson was on building our lives on a solid foundation.    We sang the, "Wise Man and the Foolish Man," song (complete with actions) and read and discussed this scripture:

"...remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall."  Helaman 5:12


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UPDATE:

Spencer's ANC is 229 today, which means he is neutropenic again.  That means no fast food and that he needs to wear a mask whenever he's out of the room.

He's still eating very little.

He reluctantly took the bandage off of his belly button incision today. 

I still fall asleep almost every time I sit down (including a head bobbing, drooling nap at stake conference today)...



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"...to express gratitude is gracious and honorable, to enact gratitude is generous and noble, but to live with gratitude ever in our hearts is to touch heaven." 
                                                                                                                 Thomas S.  Monson

Saturday, February 25, 2012

Cancer Patient vs The Most Annoying Toy in the World

Meet Mr. Wonderful....
He's handsome, well-dressed, and says wonderful things that all women would love to hear!  (see this random video from youtube for a sampling of his wonderful phrases).

   Spence won it at a white elephant gift exchange a few years ago and after entertaining him and friends for a few days,  it got set aside in one the many piles of stuff in his bedroom.  

Fast forward a few years...Spence is hospital bound and someone, definitely not his mother, rediscovered it and thought it would be really funny to bring Mr. Wonderful to the hospital for entertainment purposes. 

Too bad having leukemia gave Spencer a serious grudge against Mr. Wonderful. Instead of laughing when the toy silkily asked if her mother could stay another week, he rolled his eyes in annoyance.  And later when it promised to share the remote and carry her bags for her while she shopped, Spence deemed it the "most annoying toy in the world" and determined that Mr. Wonderful must meet the same fate as his leukemia.  
So it was that  Spencer went about destroying Mr. Wonderful... 
He removed the voice box and snipped all the wires with scissors,  before he was finally satisfied that Mr. Wonderful was put into the silent stupor he deserved. 

But, in the end, silence wasn't enough and it wasn't long before Mr. Wonderful was laid in his final resting place....
Goodbye old friend.   The ladies will miss you.


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Now if you just can't resist getting your own  Mr. Wonderful to annoy the heck out of someone, you'll be pleased to know that they're still readily available to purchase on Amazon: 

But if you do decide to get one, you may want to be careful with it in Spencer's presence. 

Just saying...

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UPDATE:
  • Because his blood counts are dropping quickly (ANC was 9000 on Thursday, 1550 on Friday, and 610 today), the doctors have Spencer on 6 different antibiotic/antifungal medications as a preventative measure from infection following his appendectomy. {diflucan, vancomycin, bactrim, flagyl, cefepime, gentamicin)  
  • Because of all the different medications going around the clock, his IV pumps are beeping incessantly....at least once an hour through the day and night.  Nights have not been very restful here the last few nights. 
  • Although his appetite is still minimal and moving around is still painful, he is definitely improved over yesterday. We'll take whatever baby steps we can!
  • I got to watch the adult session of stake conference via webcast this evening.   Tomorrow I will take the kids and attend the general session, while Glen and Spencer watch it via webcast at the hospital.  It's amazing how connected modern technology can keep us. 
  • Visitors are still more than welcome to visit Spencer, although we recommend calling first 703-776-4513 and being sensitive to how he's feeling.
  • Long-time readers of this blog know that my humor tends to be a little on the goofy side, especially when I'm tired and/or stressed.  Since lately I've been a little of both, it's somewhat amazing I've kept my true colors mostly hidden until now.  :)
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“If we constantly focus only on the stones in our mortal path, we will almost surely miss the beautiful flower or cool stream provided by the loving Father who outlined our journey. Each day can bring more joy than sorrow when our mortal and spiritual eyes are open to God's goodness. "
                                                                                                                        ~ Jeffrey R. Holland

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