Monday, April 30, 2012

The Little Soul

Author Unknown

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world.

He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.



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


400+ cards, dozens of blood donations, countless meals, gifts, phone calls, emails, mowing our lawn, plates of goodies, loaves of bread, prayers, hugs, giving the kids rides, playdates, numerous hospital visits, listening ears....

Thank you to everyone for being a part of that miracle in our lives.

Celebrating 17-Years of Greatness

17-years ago today when the doctor placed Spencer into my arms for the first time, I remember marveling at his tiny little  features.  He had dark hair like mine and brown eyes almost the exact same color as Glen's.  I was young--barely 22 and still in college when he was born--but our youthfulness did not stop us from harboring big dreams for our firstborn.  We were sure that he was destined for great things. 
Then he grew. 

And we discovered that "great" pretty much described him perfectly.    In addition to having a great sense of humor, being a great student, and a great debater.   He also had a strong penchant for great messes, great work avoiding techniques, and great and merciless teasing of his siblings.  

Then he grew some leukemia cells and at a time when he should be focusing on college entrance exams, his driver's license, playing lacrosse games for his high school team, going on dates and prom, finishing his eagle scout project, and even going to early morning seminary, Spencer has been confined to the hospital bed and taking round the clock medications.  When everything in his world suggested he had every right to go the other way, we have been comforted to see Spencer's good greats far outweigh the bad greats.  We see that he keeps a great and positive outlook in the midst of great adversity.  He is great at putting people at ease and being kind to young and old.  And that he is great at keeping a love of God in his heart. 

Through these last few months I am grateful to see a stronger glimpse of the great man that we believe he was destined to be.

Happy 17th Birthday Spencer! We are incredibly proud of you!!! 

Stay tuned tomorrow for a recap of his birthday celebrations, including the opening of the mountain of cards! 
*******************

Saturday, April 28, 2012

Starstruck on a Field Trip

 Need advice on herding cats (aka wandering 3rd grade boys)?   Or on helping an entire group of kids with varying amounts of cash to find a souvenir in an overpriced gift shop?  Or how to successfully nap while seated three to a seat on a school bus?  Call me.  I hate to brag, but I am somewhat of a field trip connoisseur  and could teach a college level course about all the sweet skills I have!  :)

Too bad I have yet to convince any colleges to add Field Trip Czar Skills as a major program. 

Sarcasm and chaperoning skills aside, I love that my kids go on field trips to places most people only read about in history books.  Places like Jamestown, Philadelphia, Yorktown, Gettysburg, Baltimore, Williamsburg, Richmond, etc.  They see them up close and personal and  I think it's awesome! 

On the dozens and dozens of field trips I've been on over the years though, it's clear that some are better than others.  Some are long and boring (like last year's 2 hour drive to a farm where we got to stay for 1/2 hour).  Some are cool.  Some rushed.  Some fun.  Some disorganized.  And some are downright awesome!   

Today I chaperoned a field trip for the first time in a few months and had to say that today's trip was of the awesome sort! 

See evidence....
They got to meet Bill Nye the Science Guy!  

He was rushing out of the convention center to an engagement at the White House, so the boys were among the last few kids who got to greet him before he greeted the president, but it was so cute to see them act a little starstruck in his presence.

Then later on,  I was showing the pictures to everyone at home and and guess who was jealous of his younger brother meeting Bill Nye the Science Guy? 

Spencer Nigh the Leukemia Guy!  That's who! 

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

UPDATE:
  • Tonight is our last night of the middle-of-the-night administering of his IV antibiotic!  I am very much looking forward to a couple of days without a 1:30am alarm going off! 
  • Spence is still feeling pretty good and is looking forward to a fun weekend of birthday celebrations. 
  • The birthday cards continue to pour in and he's getting very excited about opening them!  Thank you!!!!!
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"I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness, and the willingness to remain vulnerable."
Anne Morrow Lindbergh (sent by Carol S.)

Thursday, April 26, 2012

Our Very Full Mailbox

With an average stack of mail at our house looking like this lately....
...I think we've become the US Postal Service's favorite house.  More often than not in the last two weeks, the mailman has had to come to our door with the mail because it didn't all fit in our mailbox. 

We've got cards, postcards, and a random moose from 19 states and 3 countries.   Thanks to my sister, Kristina, cards from California far outnumber all of the rest of the states, but Utah, Colorado, Virginia, and Texas are coming in with respectable numbers as well!   We are truly in awe at so many people's kindness in sending birthday greetings to someone they don't even know. 

Thank you for helping make Spencer's birthday fun and special!    He is excited to see the mail each day and is getting antsy to start opening them in a few days!  :)

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

UPDATE: 

Thank you to all who brightened my birthday today with cards, phone calls, treats, and flowers.  It's been a long time since I've had that much attention on my birthday and it made me  feel like a kid again!  :)

Glen and Spencer are very, very happy about the Caps (the DC NHL team) winning their playoff game tonight!

Spencer is feeling fairly good and enjoying his time at home!

Be sure to check out the Spencer Birthday Blood Drive Facebook page my brother created.   The idea is to get as many people to donate blood in Spencer's name as possible before his birthday on Monday.  Check my previous post for details on how to make it happen. 

Not that I'm surprised, but I've already gotten notes from a couple of people who have donated blood in Spencer's name already...we have awesome friends!!!!   THANK YOU!!!!!! 


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

"There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle." 
                                                                               ~Albert Einstein (sent from Jake S.)

Wednesday, April 25, 2012

How to Donate Blood in Spencer's Name

Anyone who's been reading along with Spencer's updates here on the blog, knows that he has received numerous transfusions of whole blood and platelets through the course of his treatment.    During his first two rounds of chemo he was given the transfusions whenever he started experiencing any symptoms related to low blood counts.  During the third round however, the doctors suddenly seemed much more reluctant to give him blood or platelets until his numbers reached critically low levels, meaning that he would suffer with the fatigue and other symptoms for several days before being transfused.  At first we thought that it was a difference due to doctor ideology, but in time we learned that the true reason for the reticence was that INOVA hospitals are suffering a critical shortage of blood and platelets and they had placed very strict restrictions on dispensing their blood products. 

It got me to thinking how selfish I had been to expect other selfless donors  out there to donate blood so that my son could receive life-saving blood transfusions and yet I hadn't donated in about 18-years.  So today I decided that it was high time to change that.  I donated blood this morning and  have documented the process here so that you could see how easy it was!  If you are eligible, PLEASE consider donating at the INOVA blood donor center in Spencer's name (or to benefit patients in your own communities if you live far away).    Blood donated in Spencer's name will not go directly to Spencer, but would be credited to Spencer's "blood account" and would make it less likely for them to be stingy giving him future transfusions.   


HOW TO DONATE BLOOD IN SPENCER'S NAME: 

1.  Drive to the INOVA blood donor center at 3289 Woodburn Road Suite 010, Falls Church (at the corner of Gallows Road and Woodburn Road, right next to INOVA Fairfax Hospital).  Don't worry though--parking is free and much easier than at the hospital!   Walk-ins are welcome or make an appointment if you wish (see below for details)!



2.  Register--Bring your driver's license and register at the front desk, making sure you let them know that you're donating in Spencer's name.  Then fill out this eligibility questionnaire (check here for requirements).   If you've been unable to donate in the past, be sure to check the NEW REQUIREMENTS  that have eased up on a few restrictions, especially those involving travel to foreign countries.   

2.  Finger prick--This quick test just makes sure that you're not anemic.  I made it by the skin of my teeth with a hemoglobin level .1 above the minimum. 

3.  Donate--I donated whole blood, which took me all of 5 minutes and 39 seconds to donate.  Platelet donations take 1-2 hours and would make for a great time to catch up on some reading or tv shows on Hulu.  

4.  Rest, eat free food, and get yourself a cool bragging sticker. There was a whole table full of food and fridge full of water and juices to boost up your energy after donating.  I did not feel light-headed or dizzy at all, but still took advantage of a free snack while waiting the required 10 minutes before leaving the clinic!

5.  Go home knowing you just potentially just saved someone's life and that you're awesome





WORST EXCUSES NOT TO DONATE: 

I spent two years living in a foreign country as a child ( or as a missionary) and don't think I'm eligible. 
CHECK THE NEW REGS!!!  Most foreign missionaries would be fine to donate under the new eligibility requirements (the restrictions don't kick in until after spending 5-years in most countries)  The one exception is for travel over 3 months to the British Isles, which because of Glen's 2-years as a missionary there is why he served as official photographer today rather than donating as well. 

I don't have time.     I did not have an appointment and I was in and out of the door in about 45 minutes.  With an appointment I imagine it would have been even shorter.  Platelets take longer, but as mentioned above would be a great way to get caught up on some reading or tv watching. 

I just gave blood a month ago. 
Way to go on being awesome!  While it's true that you can only give whole blood every 56 days, you can give platelets every 2 weeks.   Spencer has received platelet transfusions countless times during his treatment for leukemia and they are always in short supply. 

It will hurt too much.    On a scale of 1-10, the pain of giving blood was a miniscule .28, so stop being a wimp and just do it.   

I am too young.    16-year-olds will need a form filled out by their parents before donating, but anyone 17 and over can donate without parental consent.    If you're younger than 16, then thank you for showing interest and be sure to come back and donate when you're old enough. 

I don't weigh enough to donate (110-lbs). 
   For heaven's sake, EAT A COOKIE and stop complaining! 

I live far away from Virginia and cannot donate in Spencer's name.   First of all, let it be known that we love visitors and would happily house any stray blood donors who come our way, but if perhaps that's a bit of a longish trip for you, then please consider donating to your community's  blood banks in Spencer's honor.

I don't know what type of blood I have. 
It doesn't matter a bit!  Donate and find out what type you have!

I work all day and won't have time to come.
  Check it out!  They take donations until 8:00pm.



Check out the Facebook page my brother created, to invite others donate in Spencer's name as a birthday gift to him: 


The most critical shortages are for the following types of blood:

O+, O-, B+, B-, AB-, and platelets of all types

Other Important Info to Know:
 
This location is right next to INOVA Fairfax hospital, but has much easier (and free) parking:

Woodburn Medical Park
3289 Woodburn Road, #010
Annandale, VA  22003
Map and interactive directions
Hours of operation
Monday through Friday — 8 a.m. to 8 p.m.
Saturday — 8 a.m. to 4 p.m.
Closed Sunday

Monday, April 23, 2012

Quiz Answers and Update

Thank you to all who participated in yesterday's super hard quiz!  It was fun to do a little old-fashioned blogging again, especially when that meant hearing from a few more of you readers than usual.  I was impressed with all of your good guesses and I felt so cool when I saw the number of comments it got!  Never mind that a third of them were from the same person...I'm just going with the cool feeling. 

SUPER HARD QUIZ ANSWERS:

1.  Cami was nominated as lacrosse Athlete of the Week last week. True story.  She is following in her older brother's footsteps and playing JV lacrosse for her high school.  Although she's never played before this year, she is proving to be pretty adept at it, usually scoring a goal or two or three each game. 

2.  Spencer was caught in the middle of an almost-melee when he was sitting between two people who started screaming and cursing at each other in the middle of  watching "The Lucky One" at the movie theater.   I know it sounds far-fetched, but this one is 100% true.  Spencer went to "The Lucky One" with a friend of the feminine persuasion, but since neither one of them drive yet, Glen and I decided to go along with them.  We sat on the other end of the theater giving them their space and witnessed as a very large man seated next to Spencer started loudly arguing with a sketchy looking guy sitting behind them.  It was a loud, tense, profanity-laced argument that seemed heading towards physicality, but thankfully the very-loud-arguers backed off before any fists were thrown.  I should note that Glen was poised and ready to make a mad-dash to rescue Spence and his friend should a fight have ensued. 

3.  Grandma Sandy is in process of teaching Emma how to knit.   YES!  Although technically I can crochet, sew, and cross-stitch, I can not knit, nor am I very good at crocheting, sewing, or cross-stitching.  Thank goodness for Grandma Sandy (Glen's mom)  to come help bestow some domestic skills on my girls! 

4.  Glen and I went for a much needed six-mile run.  It felt awesome.    FALSE!  Although we did go out for a six-mile-run (something that would have been a piece of cake a few months ago)....this time it did NOT feel great.  I was slow.  I had to walk a lot.   And I was still sore afterward.  Good job to ALEX and KRISTINA who guessed correctly!  ALEX is a fellow runner and a great friend who correctly suspected that I haven't been running very much lately.   When she's not acing my quizzes, I feel it's also worth mentioning that ALEX is also a superb cook and a super-organized mom that inspires me to be a better mom in many ways.  KRISTINA is my sister, who although she lives on the opposite end of the country, still keeps in nearly daily contact.   Just so you know, in addition to being a good super hard quiz guesser,  KRISTINA  is also the absolute queen of birthday cards.  She's single-handedly arranged for nearly half of the 100+ birthday cards Spencer has received thus far.  My brother MATT probably thinks I should mention him as well, but since he cheated by guessing multiple times under different aliases, I'm only mentioning him as a super hard quiz cheater who made my day by jacking up the numbers of  comments on that post! 

5.  I actually beat Glen and his mom in an uber-competitive game of Scrabble.   TRUE, TRUE, TRUE and it's definitely not because I got lucky, it's because I rock at playing Scrabble (and maybe got a little lucky)! 

6.  Ellie randomly decided to make a ginormous "I Love You" banner for her 1st grade teacher.  True and I can only imagine that it made her teacher's day. 

7.  Emma and Cami were on a 9-mile hike with the young women from church when a storm blew in, so they spent the last 3 miles running through the pouring, blustery rain.    This one was also a little hard to believe, but 100% true.  The young women are training for a 22-mile walk to the temple in June, so they go on weekly group training walks.  This week's walk was twice around a lake, which meant that there were no shortcuts to get back to the cars when the storm blew in quickly.  Although some of the girls were a little freaked out, thankfully other than getting soaked everyone got back home safe and sound.  A few of you noted that Emma is only 11 and not officially a YW yet, but because  their young women leaders decided to include any girls who would be 12 this year, she is also able to participate.    Emma is thrilled  with the opportunity to hang out with the older girls on such a challenging adventure! 

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

UPDATE:
  • Spencer went to the clinic this morning.  All his counts were low, but recovering nicely ( ANC was 580, platelets 115, and hemoglobin 10.5).   This means his immune system is still suppressed and  needs to stay away from sick people, but that he's high enough to eat fast food again.  :)
  • Everything is on target for him to be readmitted for his bone marrow biopsy, spinal tap, and 4th (and last) round of chemo on May 1st. 
  • We're getting in a good system with administering all of his medications, but man oh man am I tired!!!! 
  • Watch tomorrow for an update on Spencer's birthday cards, including the coolest card ever and a breakdown of which states have sent the most cards. 
  • The picture in today's post has nothing whatsoever to do with the written content.  It is included merely  because I am a visual person and I don't want perfectly good pictures to go to waste.  :)  
****************
"Sadness, disappointment, and severe challenge are events in life, not life itself. . . . Be a cork. When submerged in a problem, fight to be free to bob up to serve again with happiness."    Richard G. Scott
(I can't remember who sent me this quote, but thank you to whomever it was.)

Super Hard Quiz

(Long-time readers of this blog know that I love making random quizzes about our life and promising prizes of gazillions of dollars for those who answer it correctly.  Too bad for you I don't have gazillions of dollars to offer, so instead I'm offering something much awesomer that money.  Anyone who answers this quiz correctly will earn the privilege of me mentioning their name in a future blogpost.  You will be famous and it will be awesome.  )

Which one of the following statements is NOT true about the last few days? 

1.  Cami was nominated as lacrosse Athlete of the Week last week. 

2.  Spencer was caught in the middle of an almost-melee when he was sitting between two people who started screaming and cursing at each other in the middle of  watching "The Lucky One" at the movie theater. 

3.  Grandma Sandy is in process of teaching Emma how to knit. 

4.  Glen and I went for a much needed six-mile run.  It felt awesome.

5.  I actually beat Glen and his mom in an uber-competitive game of Scrabble. 

6.  Ellie randomly decided to make a ginormous "I Love You" banner for her 1st grade teacher. 

7.  Emma and Cami were on a 9-mile hike with the young women from church when a storm blew in, so they spent the last 3 miles running through the pouring, blustery rain. 

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

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."             ~Helen Keller


Sunday, April 22, 2012

Cookies and Milk


My kids have me all figured out.
When they're feeling like they could use a little more mommy time
they know that there's one sure-fire method to get mommy all to themselves for a while. 

They ask to bake a treat. 

Not only do they know that mommy has a soft spot for fun kitchen projects
(especially new recipes that she can potentially post on the recipe blog someday), 
but they also know that mommy's sweet tooth is always looking for an
altruistic reason to indulge in some delicious treat!
 Nutritional content and calories aside, I'm of the belief that some
freshly baked cookies
along with a glass of (lactose free) milk
is the panacea for many of life's woes--
especially the woes of a seven-year-old cutie missing her daily mom time. 
And the woes of a mom who is literally and figuratively trying to find ways to eat up
this precious 11-day gift
of being together as a family again.  

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

"Babies and young children have a natural gift of living life in the present, without guilt from the past or worry of the future. They embrace life with all of their senses and lose themselves in the moment. Each moment I have with my children is a gift they give to me. Being present in their presence is a gift I give to them."                                                                                          ~Ronnie Vehemente

Friday, April 20, 2012

Thank goodness...

for modern medicine...

even if it does take up an entire shelf in our fridge...

and make me drop my mouth in horror at the "cash price" we could be paying if we didn't have good insurance....

and max out the number of alarms I can set on my cell phone, including a 1:30am alarm (to administer a medicine) and a 5:09am alarm (to help get Cami out the door for seminary)...
Although I'm thinking that being at home this round won't be quite as restful as it's been in past times, we're still comforted by the knowledge that our entire family is under the same roof again!   

HAPPY DAYS! 

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

UPDATE: 
  • We are home and it seems like we have an entire pharmacy full of drugs at our house!  Previous visits home have only involved a fraction of the medications we're administering this time, but because of the infection he is recovering from, they just want to make sure their bases are covered!  
  • Here's a glimpse of his antibiotic vancomycin which he needs to be administered three times a day (this the antibiotic that causes his Red Man Syndrome if he doesn't take Benadryl beforehand)....
  • Because he still needs the antibiotic administered intravenously and we randomly don't happen to have a hospital IV pump at home, they prescribed these cool little contraptions that basically have the antibiotic inside of a balloon-like device inside this pressurized container.  When he the device is hooked up to his central line, the balloon starts depressurizing and the medicine is delivered at just the right speed.  Weird, but cool! 
  • Birthday greetings for Spencer are starting to pour in!  Thank you for taking the time to shower him with love and words of faith and encouragement.  Spencer insisted that he not open any of the letters until it's actually his birthday, but his (and our) excitement level is increasing by the day! 

*****************
" There are many kinds of challenges. Some give us 
necessary experiences.  Adverse results in this mortal 
life are not evidence of lack of faith or  of an 
imperfection in our Father in Heaven’s overall plan. 
The  refiner’s fire is real, and qualities of 
character and righteousness  that are forged in the 
furnace of affliction perfect and purify us and  
prepare us to meet God."  Quentin L.  Cook

Wednesday, April 18, 2012

IF...

...his blood counts stay up
....he stays fever free
...his chest pain stays away
...he continues to wean well from the heavy duty painkillers
...the home health care company can come with needed supplies and instruct us how to use them

then Spencer can go home tomorrow!!!!!!!!

Not only that, but the docs have discussed and decided that if all of the above continues, then....
....
....
....
....
....
He can stay home through his birthday (April 30th) and  return to the hospital for his bone marrow biopsy/readmission on May 1st. 


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

"God is anxiously waiting for the chance to answer your prayers and fulfill your dreams, just as He always has. But He can't if you don't pray, and He can't if you don't dream. In short, He can't if you don't believe.”
Jeffrey R. Holland

Monday, April 16, 2012

Prince Charming ?

Since I've heard from multiple sources that my posts have been a little on the tear jerker side of things lately, I've decided that today's post will be the exact opposite of tear jerker.  This post will be all about how having leukemia has made Spencer into Prince Charming.  Not the Prince Charming who wears frilly shirts, rides horses, and goes about rescuing fair maidens from scary dragons.  No, our Spencer has eschewed the Disney-esque version of Prince Charming and instead has become The Prince Charming of Hospital Patients! 

What does it take to be the Prince Charming of Hospital Patients?  In addition to totally rocking the no-eyebrow look, Spence is
super polite, doesn't pee on the floor, and can take care of his own "downstream occlusions" in the IV line!  Combine these highly desirable patient qualities with the fact that Spencer can engage in semi-intelligent conversations and has been known to throw out flattering words to the nurses in his sleep (literally) and you can see a small glimpse at how Spence has become THE #1 pediatric hem/onc patient in demand!  The nurses literally fight over who gets to take care of him each day and many of them are so distraught when they don't get him that they will come to visit him regularly even when he's not their patient. 

***

Don't believe he's of Prince Charming quality yet?  Here's an actual sampling of some of the lines I've heard him use on the nurses in the last few weeks.   You decide.  



Nurse with mock exasperation:  "Why is your IV beeping again?" 

Spencer:  "I'm just purposely sabotaging the line so you would have to come back in here."


***

Nurse:  "It's been a while since I've seen you..."

Spencer:  "Yeah, where have you been?  I've been here waiting for you every day.  And every day with out you seems like an eternity."

***

Spencer:  "If you had been my nurse that night, then I wouldn't have needed my appendix out." 

***

Nurse:  "So and so keeps stealing you from me.  Maybe next shift I'll get you." 

Spencer:  "I'll just start being rude to all the other nurses, so you'll be the only one who wants me as their patient.  You'll be doing them all a favor and no one else will know the real reason is because I want you to be my nurse more often."  :)

***

Nurse (yawning):  "I had a hard time getting up and coming to work this morning." 

Spencer:  "But then you thought of me and got here as fast as you could?  Right?" 

Nurse (in full agreement):
  How did you know?   



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

UPDATE:
  • Think of Spencer like Yoda, but instead of being little and green he wears shorts, defeats leukemia, and he's awesome. He's your bro—He's Broda!
  • In Spencer's body, where the pain gland should be, there is a second awesome gland. True story.
  • The reduced chest pain/lack of fevers is like the mini-cherry on top of the regular cherry on top of the sundae of awesomeness that will be his life when he can hopefully go home this week. 

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



"As we look for humor, seek for the eternal perspective, understand the principle of compensation, and draw near to our Heavenly Father, we can endure hardship and trial. We can say,“Come what may, and love it.”  

                                                                                                                      Joseph B. Wirthlin

Saturday, April 14, 2012

Motherhood Reflections

It is late and I wish my son would go to sleep.  I look over at his round, peach fuzz covered head tossing and turning while he fights sleep, and I marvel that he could have ever fit inside my womb.  I remember when the doctor placed Spencer into my arms for the first time, and for as joyful as I was to finally meet him, I also distinctly felt the worry of whether I could be a good enough mother to raise him to be the man that he was meant to be.   I never could have imagined then, the exquisite joy and the heart-wrenching aches that motherhood would one day bring into my life.

Each child that has come to our family since then has brought with them their own unique personality and set of challenges. God blesses us with these little people in our lives and they are everything to us.  We love them, nurture them, pray for them, teach them the best we can,  and then we hold our breaths and hope that our love and prayers are enough to get them to where they need to be.   To be the person that God intended them to be. 

I look at my oldest son now.  His hair is gone and his body gaunt, but I still see glimpses of the same Spencer we've always known.  He pores over college catalogs and wonders whether his grades are good enough to get in. He starts to tell me about a recruiting letter he just received from a lacrosse coach at an Ivy League school, but then his IV pump starts beeping and we are interrupted while we wait for the nurse to come in to change his antibiotic.   While the nurse works, my mind wanders and I find myself wondering once again if my mothering skills are up to par for this kind of challenge.  Parenting my younger kids from afar, while we spend our days at the hospital and help Spencer face the battle of his life.  It certainly isn't quite the motherhood journey I envisioned all those years ago. 

But then I look over at my son.  He has had his independence ripped out from underneath him in the very moment when his friends are spreading their wings, yet he only rarely has ever displayed any amount of self-pity. He is scared for the future, but does not allow that fear to overwhelm him. Suddenly I am comforted when I realize that through this journey,  that not only have I seen a truer glimpse of the man that he is becoming, but that I am also becoming the mother I was always meant to be. 

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UPDATE:
  • Spence has been fever-free for 2 nights in a row.  This is good news!
  • All tests (MRI, CT scans, bone scans, echocardiogram, angiogram, etc) have come back normal, however they have mentioned that they will likely repeat all the testing next week when his counts have rebounded.   Apparently when you have an infection when you have no immune system, your body doesn't fight and respond to the infection like it's supposed to (swelling, warmth, redness, etc).  When the body can't fight it,  locating where an infection is can be very difficult.  We're praying that the lack of fever means that whatever infection is brewing is  resolving itself with the antibiotics he's already on!  
  • His chest pain has continued, but the nurse is going to attempt to wean him down to slightly less potent painkillers tonight to see if they'll do the trick.
  • ANC is still 0, but monocytes and other blood markers are starting to rise, which means the neutrophils should start returning again soon.
  • Cami had a cupcake making factory at our house this weekend.  She was hired by a friend to make 6 dozen cupcakes for a party and I think she had as much fun making them as the party goers had eating them! 
  • I had the privilege of going to a Women's Conference this morning.  I loved the inspirational classes, good food, spiritual upliftment, and social time with friends.  Thanks to all who organized it!
  • Thank you for making Spencer feel loved today by visiting him.  He loved it! 
  • Spencer's 17th birthday is coming up on April 30th and we are hoping to shower him with cards and notes from across the country (and world?). Please help make his hospital-bound birthday special by sending him a quick note/encouraging word. Please email me for our address. goolds@verizon.net
    (PS feel free to spread the word to other nice friends / famous people you know/ people who live in foreign countries who may want to support him in this way as well.)

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"Motherhood is near to divinity. It is the highest, holiest service to be assumed by mankind. It places her who honors its holy calling and service next to the angels."
                                                                              The First Presidency of the Church of Jesus Christ of Latter-Day Saints

Friday, April 13, 2012

For Your Information...

Spencer has had 2 ct scans in the last few days, both of which have required an IV to be inserted in his arm, since the contrast dye they use cannot be inserted in his central line. 

Although Spencer's been hooked up to an IV through a central line in his chest for the better part of three months now and he gets his blood drawn almost daily, sometimes multiple times daily.  And he's also  had his appendix out, gone through several spinal taps and a handful of bone marrow biopsies....yet when it comes to being poked with a needle, he is not a fan.  Even the numbing cream did little to alleviate his worries, especially when the nurse informed him that she had to use a bigger needle than they even stock on the hem/onc floor.   

Lucky for me, we have nice friends that are keeping Spence's goodie plate well-stocked with delicious yum-yums (as Spencer likes to call them).  This homemade whoopie pie made by Jenny M. turned out to be a great panacea for soothing the pains of getting poked (and for keeping his weight up)!

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UPDATE:
  • ANC is still 0. 
  • The severity and persistence of Spencer's chest pain along with the daily fevers are completely perplexing and concerning to the doctors.  Nothing unusual was found on the MRI this morning.  Further CT scans were performed tonight.   They really hope to get to the bottom of it, so they can start treating the cause, rather than just the symptoms. 
  • Still no blood transfusion. 
  • In summary, Spence is exhausted from the low blood counts, is in continuous pain, and still has no immune system.  :(  
  • Birthday cards have started to arrive for Spencer!  :)  Thank you! 

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“The Master not only foresees perfectly the growing power of the opposing forces but also knows what it is like to be mortal, He knows what it is like to have the cares of life press upon us. He knows that we are to eat bread by the sweat of our brows and of the cares, concerns, and even sorrows that come from the command to bring children to the earth. And He knows that the trials we face and our human powers to deal with them ebb and flow.


“He knows the mistake we can so easily make: to underestimate the forces working for us and to rely too much on our human powers. And so He offers us the covenant to ‘always remember Him’ and the warning to ‘pray always’ so that we will place our reliance on Him, our only safety. It is not hard to know what to do. The very difficulty of remembering always and praying always is a needed spur to try harder. The danger lies in delay or drift.”   Henry B. Eyring  (From Jen B.)

Thursday, April 12, 2012

Family Pictures: Before and After

From the moment I saw this picture my sister snapped of us on Christmas morning, I was in love with it.  Not only did I like the way the matching pajamas all came together on us, but I also loved how we actually all were looking at the camera and smiling (mostly).  Even our dog, Rocky, whom we didn't notice was in the pictures until afterward, looked so regal and protective sitting there on the picnic table in front of us.    

Although looking back, I can see the signs everywhere....little did we know then the storm that was brewing in Spencer's body at the time.  And little did we know that this picture would be the last physical evidence of our "normal" lives.  A glimpse of our lives before our world was turned permanently upside down. 

Fast forward a few months....here we are now. 
 Spencer's body is weak, but fighting with all its might.   We are physically exhausted, but ever in awe at the generosity and kindness of friends and strangers alike.  While we miss being all together as a family,  we cherish  every second we do have together.  And we now pray with more fervency than ever as we long for the day when we can say again:

We are all here,
Father, mother, sister, brother,
All who hold each other dear.
Each chair is filled—
We’re all at home …
We’re all—all here

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UPDATE: 
  • Yesterday marked the 3-month anniversary from the day of his diagnosis. 
  • ANC is still 0.   They think his counts aren't rebounding because of the infection he is fighting.
  • His chest pain is still pretty significant, although it seems that they've finally found a pain medication that seems better at controlling it (dilaudid).  They did a ct scan and an angiogram yesterday to rule out a blood clot (everything was normal).  Sometime tonight or tomorrow (whenever they can squeeze him in) they're doing an MRI to rule out a bone infection in his chest. 
  • They've identified the bacteria in his blood as a "normal" bacteria that is not a problem for someone with a strong immune system.  Unfortunately since Spencer's body is not healthy, they still need to take it seriously and treat it aggressively with antibiotics.  Although he's randomly spiked fevers for the last few nights in a row, in general they're pleased that the antibiotics they're already giving him seem to be helping the infection. 
  • Because each blood transfusion offers a new opportunity for the introduction of otherwise harmless bacteria into his immuno-compromised body, the docs are pushing off giving him transfusions for as long as they can. His hemoglobin counts have been quite low for a few days now, so Spence is very fatigued.    With as low as his hemoglobin/hematocrit was today we expect that he'll get a full blood transfusion tomorrow.  (Hemoglobin=7.7, Normal=11.1, Automatic transfusion when counts are <7)
  • His platelets were at 15 today (normal is 140).   They automatically transfuse platelets when they get below 10, but since he was having random nosebleeds, they opted to give him platelets this afternoon.  
  • Don't forget to send your birthday greetings to Spencer.  He'll be 17 on April 30th and we're hoping to shower him with cards and letters from around the country.  (No gifts please).  
    Email me at goolds@verizon.net for our address. 

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In our lives there is bound to come some pain, surely as there are storms and falling rain; just believe that the one who holds the storms will bring the sun.  (Author Unknown.  Thanks to Kim B. for sending it.)

Monday, April 9, 2012

Working Hard and Playing Hard During Spring Break

Here's a little glimpse of our Spring Break: 

Monday:  yardwork with mom, made cinnabunnies with mom, playdates, Ellie overcomes her fear of sliding down the pole at the playground

Tuesday: yardwork with dad, matinee of Mirror, Mirror with dad, free ice cream at Ben and Jerry's

Wednesday:  more yardwork with mom, Frying Pan Farm Park with mom and friends



Thursday:  more yardwork with dad, Antietam battlefield with dad


Friday:  housework with mom, walk on trails at Eakin Park, Hidden Oaks Nature Center with mom and lots and lots of tadpoles


Sunday:  Visitors, Easter dinner at the hospital (made by Glen, Emma, and Cami)

Monday:  Cub scout field trip to MeadowLark Gardens, Cami and Emma walk 8 miles with YW to visit Spence in the hospital,  playdates with friends

All in all, it was a great week.  We did loads of hard work, but had something fun to look forward to everyday. 
 
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UPDATE:

Unfortunately Spring Break was not so fun for Spencer:

His fever went away.  Now it's back.  His chest pain went away.  Now it's back with a vengeance.  His blood tested positive for a bacteria.  Still trying to figure out which bacteria.  He's on loads and loads of meds.  Spence counted 24 pills in one day and that did not include all the additional intravenous medications he is receiving.  They've got both of the lumens from his central line hooked up to fluids now, to minimize the chance of introducing infection into his line.   Depending on the bacteria they find and how well he responds to the antibiotics, he may not be able to go home before round 4 begins.  :(    Unless something changes medically, we are definitely not doing transplant.   

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“Ask yourself, 'How did God bless me today?' If you do that long enough and with faith, you will find yourself remembering blessings. And sometimes, you will have gifts brought to your mind which you failed to notice during the day, but which you will then know were a touch of God’s hand in your life.”                              –Henry B. Eyring

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