Thursday, May 31, 2012

A Very Happy Short Story


Once upon a time there was a young man who got sick.  The doctors told him he had cancer and that he would have to spend a long time in the hospital.  It wasn't a very fun experience, but people prayed for him, showered him and his family with love, and through the pain he kept a good attitude.

Then one day almost five months later the doctors said that he was better and although his counts were still very low (about 80 when normal is about 1500), that it was time for him to go home.  So he hurried, packed up his bags, finished his ceiling tile.

said goodbye to the nurses...

and walked out of the hospital for good! 

And we are all very happy and feel extraordinarily blessed. 


The end.  

Wise Words by Lara


"Four score and seven minutes ago, I had a dream that my kids would ask not what their mother could do for them, but instead would ask what they could for their mother.  That would be one small step for them and one giant step in gratitude for their mother! " 

...spoken after an eager teen promises to help her mother through the crazy afternoon/evening that lies ahead and then promptly climbs into bed for a long nap.

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"I also had a dream that the kids would learn that putting off what they can do today until midnight the night before it's due tends to make their mother unhealthy, unwieldly, and prone to speak something unwise."

...spoken at midnight after a child sprung the news in the middle of a highly stressful afternoon, that he has a book report due the next day.  And he hadn't read the book yet.   

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"To be a mean mom or not be a mean mom?  That is not a very hard question."

...spoken after a certain child threw a fit for the umpteenth time that week. 

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

"If at first you don't succeed, cry, cry, and cry some more" 

...spoken after realizing that getting rid of the cursed honey bees that have invaded our chimney is going to be far more stressful that just bug bombing them.  Our choices are:  

1.  kill them (an endangered species) and they die in our walls leaving their honey and hive behind, thereby attracting loads of other pests with their dead bodies and leftover honey. 

2.  hire a beekeeper to get rid of them humanely and pay hundreds (maybe thousands) of dollars for them to rip (then repair) holes in our walls so they can safely extract all of the bees, hive, and honey. 

3.  leave the bees be and now that they're in the hive, hope that they don't bother us anymore.  Clean up the remnants of their hive/honey (ripping holes in the wall) after they leave and find a new home.


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

"Glory, glory Hallelujah!" 

...spoken after a certain 9-year-old finally finished his book report at almost 1:00am

UPDATE:  Spencer's counts are sloooooooooooowly rising (ANC=62) and he is getting exceedingly stir-crazy. 

Wednesday, May 30, 2012

Angrrrrrrrrr Management

I have absolutely nothing to blog about and it's making me mad...

....almost as mad as Glen and Spencer constantly beating me at Scramble...

and equally as mad as I am at Spencer who still plays an annoying game of peek-a-boo whenever I pull out the camera....

but none of this pent up madness comes close to how peeved as I am about the wasps that built a nest in our chimney and started coming through the cracks in our fireplace doors and swarming into our house, inciting panic all around (especially in a certain 7-year-old who sequestered herself in a locked bedroom for the evening while my sister and I sealed up the cracks with duct tape and spent the rest of the night on a dangerous newspaper wielding wasp killing spree). 
And my anger at the wasps was only a fraction of what I felt at the pest control company who took one look at the nest and said they wouldn't touch them...

after which we tore up the contract in front of them and fired them on the spot.

Grrrrr....

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

UPDATE: 

Today is the 4-week mark of his 4th round of chemo.  

Spence's ANC is 42. 

His hemoglobin was 6.8 today, so he received 2 bags of blood this afternoon. 

Spencer (and his mother) have a bad case of cabin fever. 


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




Sunday, May 27, 2012

Motorcycles, Thunder, and Heroes Proved

One of our favorite Sunday before Memorial Day traditions is to walk to the edge of our neighborhood and watch the "Rolling Thunder" parade as they head from the local Harley Davidson store to DC.  The thousands upon thousands of motorcycles, mostly bedecked with American and/or POW flags, never fails to inspire me.  Though a lot of the riders exuded a bit of a "rough" exterior, their smiles, waves, and sense of American pride, inspire me to be more appreciative of those men and women through history who have died in the service of our country. 



Seeing their sense of pride in their country as they gather from all over America to honor those who have died in the line of duty, reminded me of a book I am in process of reading right now.   It's called Seven Miracles That Saved America.  It's a fascinating book about episodes in our country's history where when all the odds were stacked against us, the hand of God intervened to preserve our young nation, so that it could become a haven for progress and religious freedom.   Between seeing the bikers' flags waving behind them and reading the book I've been struck with two facts.  Number one being that a lot of things had to fall into place to make our nation as great as it is, and imperfect though it and its leaders may be, our governmental system is pretty darn amazing and I feel blessed to be an American citizen.  And the second fact is that a whole lot of people over the course of our country's history have sacrificed their lives to make America what it is today.

It brings to my mind the words to one of my favorite patriotic hymns:   


O beautiful for heroes proved In liberating strife,
Who more than self their country loved,
And mercy more than life!
America! America! May God thy gold refine
Till all success be nobleness,
And ev'ry gain divine!
Today I am grateful to live in a land where my family can live our lives and worship God the way we feel is right in our hearts.  


God Bless America!



UPDATE:
  • His counts are still low (ANC=28), but monocytes and other blood counts show signs of improvement.  He will likely receive a blood transfusion today.  Spencer is bummed about not being home for Memorial Day, but is optimistic that he will be discharged sometime this week.
  • He is feeling great except for being very tired and some mouth sores, which continue to make eating painful.  He uses the "magic mouthwash", which has a numbing effect several times a day.    The sores are mostly on his gums and roof of his mouth this time, rather than in his throat, so he's definitely staying better nourished than he did last time he had the mucositis. 
  • Under normal conditions, I rarely watch any tv at all, but lately Spence has been watching several hours a day.  I am now in media overload and wouldn't mind if I never saw another tv again ever. 


"O, thus be it ever when freemen shall stand,
Between their lov'd homes and the war's desolation;
Blest with vict'ry and peace, may the heav'n-rescued land
Praise the Pow'r that hath made and preserv'd us a nation!
Then conquer we must, when our cause is just,
And this be our motto: "In God is our trust"
And the star-spangled banner in triumph shall wave
O'er the land of the free and the home of the brave!"

Francis Scott Key

Friday, May 25, 2012

Restraining Order

To the Previous Occupant of Spencer's Blood and Bone Marrow (aka Leukemia Cells),

 Pursuant to law 4/30, please see the restraining order document below. 

In the following document you will see orders to cease and desist all production of leukemia cells immediately.  The residence in which you are living in cannot take any more abuse and we have already tried to restrain you under the auspices of the law (chemo, prayers, etc). 


You have forthwith been warned to keep your malformed cells packed away and do not attempt to enter the premises (aka Spencer's bone marrow) ever again. Failure to follow these specific warnings may result in your immediate eviction by the medical team known as "blood and marrow transplant." I have heard that these are rough to deal with and it would be much easier for your's and Spencer's sake to stay peacefully away.

Sincerely Yours, 
A Concerned Citizen


www.legalfakes.com

Wednesday, May 23, 2012

What Would You Do?

....if your IV tubing cracked and resulted in blood dripping down your arm and splattering all over the floor? 

Freak out?  Faint? 

Well, if you're like me that's what you would do. 

But if you happen to be the uber medically desensitized Spencer, you would calmly let the nurse pull out the needle, sop up some of the blood dripping down your arm and without skipping a beat  snap a picture with your iPad and post the pic to twitter with the hashtag "yaaaaaaay #excitement"  all before the nurse could even get back with a bandage for it. 

All the while I was trying to figure out how quickly I could leave for home... 

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

UPDATE:

  • Thank goodness Spencer had just received a platelet transfusion right before the IV incident or it could have been a lot messier of a problem.  As it was, he did have a massive headache the rest of the day. 
  • His counts are still low and he'll likely get a red blood transfusion tomorrow.  He is still hopeful that discharge may be this weekend.
  • Ellie had to get a routine blood test today, which historically has been a very stressful experience for her.  But today she surprised me and the tech when she burst out laughing right at the moment we expected her to cry and proclaimed that "it tickled".   :)
  • The kids all randomly seem to be outgrowing their clothes and shoes at the same time, so we've been making a few stops at the local thrift store lately.  We've found shorts for the summer, shoes to tide them over until school starts, a couple of summer wardrobe updates for me, and these cute new Sunday outfits for Ellie and Emma....all for a small fraction of what they'd cost new! 


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"Life will never be easy. When those difficult times come, it is up to us whether we curse God, as Job’s wife would have had him do, or trust in the Lord and seek to learn what He would have us learn. "

                                                                                                                              ~Kevin Jeffs

Monday, May 21, 2012

Things that Make Spencer Smile....

The closer we get to the end of Spencer's treatment, the more our anxiety about the future seems to overtake our thoughts.  While we're trying to stay focused on the lovely gift it will be to have our entire family under the same roof again, we find ourselves increasingly worried about post-leukemia life.  Things like the chance of Spencer's leukemia recurring (a likelihood of almost 50%), the chance of other health issues he may face resulting from his treatment, and Glen getting serious about finding a job (hopefully with as excellent of insurance plan as he currently has through his former employer).  All that and the other normal worries of parenting and post-leukemia life isn't looking like all the roses and posies we originally envisioned. 

But instead of dwelling on all that, today's post is dedicated to one of my favorite sights in the world....Spencer's smile! 

Here are a few things that are making Spencer smile right now....

Feeling good enough to get outside and enjoy some sunshine in the hospital courtyard....


The priest quorum from church coming to visit, share a lesson, and administer the sacrament each Sunday afternoon....

Finding a cute new screensaver for his iPad...

Putting the bed on its highest setting and freaking out the nurses as they yell about his low platelet counts....

Butterfingers...

*************************
UPDATE:

His counts are still around zero, but other counts in his blood are showing the beginning signs of recovery.

Spencer's peach fuzz hair is falling out one last time. 

The light at the end of the tunnel is getting closer and closer.  Docs are saying that going home by Memorial Day is a definite possibility. 


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

I need a good dose of Annie's optimism right now....


The sun'll come out
Tomorrow
Bet your bottom dollar
That tomorrow
There'll be sun!

Just thinkin' about

Tomorrow
Clears away the cobwebs,
And the sorrow
'Til there's none!

When I'm stuck a day

That's gray,
And lonely,
I just stick out my chin
And Grin,
And Say,
Oh!

The sun'll come out

Tomorrow
So ya gotta hang on
'Til tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You're always
A day
A way!




Sunday, May 20, 2012

Things that Make Me Smile...


Spencer who has been feeling wonderfully well since his central line was removed, so well that he consented for this picture with only minimal complaining.....

My sweet little Ellie girl who is one of the few of my kids who consistently and happily still poses for pictures....

Watching Spencer plop down in a sunny spot in the courtyard to play with his remote control helicopter....

Watching my kids run their hearts out at the Hershey's track and field meet this past weekend....


Watching Ellie entertain herself at the track meet by giggling with her cute friends....


Reminiscent of the way Cami did when she was that age, I loved watching my nephew "dig for gold" then promptly put the nugget in his mouth....

Getting visits from my sisters, sister-in-law, and sweet little nephew who was eating a much tastier green treat in these pictures...

A teenage daughter who will still plop down on the couch and snuggle up with her little brother...

and still finds joy in a little romp through the rain...

and last but not least....

the best mother's day card EVER (thought up and created on a humongous tri-fold by my awesome hubby)!


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"This music is so awesome, it's like an Eggo waffle to my ears."
                                                                                                   ~Spencer G. (cancer patient)


Thursday, May 17, 2012

"I Can't Think of a Good Title"

In the middle of exercising, loads of laundry, scrubbing the house, and plowing a path through the kids' room today, I had  a couple of very worried people get in touch with me to find out why I hadn't blogged anything yet and if everything was okay.   After feeling cool for a minute thinking that someone actually cares if I miss a day or two blogging (a new phenomenon, I tell you!), I realized that cool or not, it's wonderful to know that there are so many people who care about our family.  

So now I am blogging to say everything is fine and dandy.    It was a long process (the vast majority of it spent waiting in windowless rooms in the bowels of the hospital), but Spencer's central line was successfully removed by Dr. A on Tuesday.    The poor kid wasn't able to eat or drink the entire day (until 10pm), because he was being sedated, but he took the lack of food better than his mom and has been eating nonstop since then to make up for the lost calories. 

Spence let me take a little photo shoot of his line before it was removed (but has yet to let me take a picture of it since it's been removed).  You can see that it was stitched into place on the left side of his chest near the shoulder.  It went in a large vein that ran alongside of his heart.  It was kept covered with a sterile dressing, which was very carefully changed once a week. 

For the past few months all of his blood has been drawn from the line and all chemo and meds administered through it.  Normally they would keep it in until a week or so after he was released from the hospital for the last time, but because he is essentially done with his treatment and just waiting for his counts to come back up again, it was easier to just take out the source of the infection and administer any fluids and meds through an IV in his arm instead.  Spencer did not enjoy getting the IV in his arm, but since getting the line out meant that he was one step closer to being done forever he didn't complain a bit. 

Lab results identified the bacteria as one that is easily treated with an antibiotic (Cefapime) and it was confirmed that the bacteria was confined to his line and was not in his peripheral blood stream, which would have made it a little more serious. 

Yesterday Spencer had a visit from one of his cancer buddies.  Sean recently finished his year-and-a-half course of treatment and was already sporting a great head of hair.  He told us all about the amazing Make-A-Wish trip he'd gone on with his family where he got to swim with the dolphins on a Disney Cruise.  It made Spencer all the more excited for his Make-A-Wish trip which is still in process of getting approved.   (Can you guess where he wants to go?)
As happy as we were to see a healthy, energetic Sean and his mother, we've been sad to hear in the last couple of days that two of our other cancer buddies are not doing well.  Both fellow AML patients, a 12-year-old girl and 5-year-old boy, are not responding well to treatment and it's breaking my heart to hear of the pain they (and their families) are enduring .  Cancer is a horrible, horrible disease for anyone--old or young, but it seems even moreso for these young kids who have barely lived their lives.   :( 


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

Changing topics now...I received this card in the mail a couple of days ago...

I thought it was cool that they sent the card to say that they'd used the blood that I donated a couple weeks ago.  There's no way of ever knowing, but with as many blood transfusions as Spencer's received in the last week or two, it's a definite possibility that he's got some of his mama's blood in him now. 

More than he already had.  :)

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"...the dial on the wheel of sorrow eventually points to each of us. At one time or another, everyone must experience sorrow. No one is exempt . . . Learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at the time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others . . . The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
                                                                                                              - Joseph B. Wirthlin

Tuesday, May 15, 2012

Central Line is Coming Out...

Spence tested positive for a bacteria in his central line (the IV surgically implanted in his chest), so they've already scheduled him for surgery this morning to go ahead and remove it.  The surgery is supposed to be pretty quick and easy with only light sedation, so it should be a fast recovery. 

The worst part about this will be that he will have to have IV's in his arm for the remainder of his treatment, in order to receive the antibiotics, blood transfusions, and fluids he still needs.  IV's in the arm are also more intrusive to moving around and will require much more poking than he's used to.  Speaking of transfusions, he is already receiving another 2 units of blood and platelets this morning before the surgery.  Thank you to all who donated blood.  Just think....it could be your blood flowing into him right now. 

Docs are hopeful that removing the central line will take care of his infection/fever pretty quickly.  With an immune system at zero, it is extra important to keep him healthy.  Too bad the cold I have didn't consult with me about when the best time would be to develop it.  It's most likely the same cold that Spencer already has, but I can't even tell you how horrified I was as I felt it coming on while I was in the hospital with Spencer.  Through the course of Spencer's treatment (in the middle of sick season) it's actually pretty amazing that this is the first time that either Glen or I has really been sick. 

Only a couple more weeks until (hopefully) he's done forever with leukemia. 

We can do this....


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

"The struggle of life is one of our greatest blessings. It makes 
us patient, sensitive, and Godlike. It teaches us that although 
the world is full of suffering, it is also full of the overcoming 
of it."
                                                                         - Helen Keller


Monday, May 14, 2012

Status Update

this weekend: 

c-diff: 
gone

isolation:  over

ANC:  0

blood:  platelet transfusion on Saturday, whole blood transfusion on Sunday (it could have been your blood he received!)

new room:  room 514--aka the "biggest room in the unit"

new phone number:  703-776-4514

spence:  good mood, happily played with a remote control helicopter all evening (thanks Nielsons!), watched the season finale of Once Upon a Time

me:  spoiled by Glen and kids for a wonderful mother's day

last night

temperature:  101.6

IV:  hooked back up to fluids and round the clock antibiotics

spence's mouth sores:  horrible

spence's cough:  worse

amount of sleep:  very little

course of action:  pray


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

"The wise man in the storm prays God, not for safety from danger, but for deliverance from fear."
                                                                                                         ~ Ralph Waldo Emerson

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

 This picture doesn't have anything to do with this post, but shows Spencer a couple of days ago when he was feeling better.  He is very proud of his very soft peach fuzz hair right now and doesn't mind (even enjoys) people (especially cute young females) rubbing his head for luck.  :)

Sunday, May 13, 2012

20 Lessons I Learned From My Mother


1.  Prayer works, whining doesn't.
2.  TV is bad, books are good.
3.  Some oldies music and a comfy pair of sweats is all you need for a good workout. 
4.  People of a certain political persuasion need to get their heads examined.
5.  Simple is better.
6.  Kids grow fast and it's important to focus on the things that really matter. 
7.  Coffee cakes and coffee tables don't really exist, they're actually called breakfast cakes and tv tables.
8.  The only difference between a person chewing gum and a cow chewing its cud is the intelligent look on the face of the cow. We had this quote hanging on our fridge for years, but alas it was one of the least effective of mom's edicts, since most of us kids have decided that we prefer having minty fresh breath over looking intelligent.
9.  Keeping one night a week set aside for family night is well worth the sacrifice and effort.
10. Our church leaders are called by God.
11.  One pair of tennis shoes and one pair of Sunday shoes is all the footwear you need.  I actually have about five pairs, three of which I wear on a regular basis, which basically makes me a shoe horse according to mom.  
12.  Freckles are angel kisses and nothing to be embarrassed about.
13.  America is a blessed land and we should do our best to be good citizens--by voting in every election (big or small) and by getting involved in trying to affect positive changes in the community.
14.  Beauty comes from within.
15.  You need to vary the hiding places of goodies and gifts frequently. 
16.  Embarrassing topics should be avoided at all costs, but if one has to refer to it, then code names make it less embarrassing. (For instance, saying you need a new "arb" is much less blush worthy than saying you need a new bra.)
17.  It's nice to be important, but it's more important to be nice. 
18.  We are blessed to live in a day and time when there is a living prophet on the earth. 
19.  Why pay full price for something, when you can just skip buying it altogether?   
20. Slow down.  Take time to smell the coffee....er, I mean roses. 

...And the list could have gone on and on.  Thank you mom!!!  I love you!

                                          Our mothers on our wedding day-- Denver, Colorado Temple---December 1993

   from left:  My Nana Crain, Glen's Grandmother Loughton, Glen's mother Sandy, My Mom, My Grandma Hepworth             (The only missing grandmother that day was Glen's Grandma Goold)


 


I also want to express my heartfelt gratitude and love to Glen's mother,  Sandy, who is as kind, generous, accepting, and loving a mother-in-law as anyone could ever wish for! 

Happy Mother's Day!
"...I did remember the words which they said unto me that their mothers had taught them."  Alma 57:21

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

"Motherhood is the greatest potential influence either for good or ill in human life. The mothers image is the first that stamps itself on the unwritten page of the young child's mind. It is her caress that first awakens a sense of security, her kiss, the first realization of affection, her sympathy and tenderness, the first assurance that there is love in the world."

                                                                                                                                                             ~David O McKay

Saturday, May 12, 2012

It came...

yes, it's true...

....the bone marrow results have arrived from Seattle (see below)

....his eyebrows and facial hair have returned
but that's not what this post is about! 
....
....
....
....
....
Spencer received a belated birthday letter in the mail today....
It only had about 20 miles to travel, but I daresay it was one of the most exciting birthday greetings he's ever received! 
VERY COOL!!!!

....thank you to whomever has cool connections and arranged for this letter to be sent.   Spencer is very excited about it!

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

UPDATE: 

Results from Seattle are in and Spencer's bone marrow is officially clear!!!!

Spence is still nauseous and not eating much, but his spirits remain good and he can still beat me at Scramble.

His ANC is dropping quickly.  (it's at 8.7 today)

Emperor's New Groove is a quality show. 

Our family is Rocking the Red tonight!  Let's go CAPS!!


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

”In my ninety-plus years, I have learned a secret. I have learned that when good men and good women face challenges with optimism, things will always work out!.... Despite how difficult circumstances may look at the moment, those who have faith and move forward with a happy spirit will find that things always work out.”
                                                                                             ~ President Gordon B. Hinckley

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