Thursday, March 29, 2012

Isolation



Isolation is prescribed for Spence after coming down with a  stomach bug called Clostridium difficile (C. Diff for short), which although common and treatable, is highly contagious among cancer patients with suppressed immune systems.  

Spence has his own personal stethoscope and blood pressure machine in the room, so that they don't have to touch any other patients. 

One whole week without leaving the room! 

Lara and Glen are annoyed that the isolation even applies to us and there will be no more walking the halls or going to the  nutrition center anymore.  Straight from the elevator to the room is all we can do.

An antibiotic called flagyl is how they treat C-Diff. 

The nurses will have to run all errands for us, which will include getting ice water, heating up food in the microwave, and fetching fresh linens for us. 

It's considered almost exclusively a hospital bacteria. 

Oddly, Spencer does not feel too horrible with this bug.  The stomach cramps and frequent trips to the bathroom aren't fun, but for the most part he's eating okay and feeling somewhat chipper. 

Nurses and doctors have to wear gloves and full body suits when they come to Spence's room, so they don't spread the C. Diff germ to other patients on their clothing after visiting Spence. 

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This is the glove and gown station just outside Spence's door.  It's for the nurses and doctors to use, so they don't spread germs from him to other patients.   Visitors do NOT have to put gloves and gowns on unless they are visiting other rooms (including the nourishment center).

Spence's very own vital machine, complete with blood pressure reader and electronic thermometer. 

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Just a note:
  VISITORS ARE STILL WELCOME!!!!  This is one of those bugs that is only a problem for people with suppressed immune systems and/or people who are handling bodily fluids of the patient.    While this is a bug that isn't fun for Spence, he actually doesn't feel too horrible either.  Please come visit!!!   The only difference you'll notice is that he can't leave the room and you'll need to wash your hands with soap and water (instead of the hand sanitizer) upon arriving and leaving his room. 


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"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." 
                                                                                            Martin Luther King, Jr.                                                                                                                      (as seen on the MLK memorial in DC)

Tuesday, March 27, 2012

How to Feed a Cancer Patient


My Background:
Anyone who knows me well knows that I'm a little diabolical when it comes to food.  Yes, my recipe blog is filled with evil dessert recipes and cheese filled pasta dishes, but did you also know that I rarely use white flour, love to hide spinach in foods, almost always buy brown rice, whole-grain pasta, and whole wheat tortillas, and far too occasionally for my family's taste cook with red meat?  I guess I'm of the ilk that if we're going to enjoy sinfully delicious desserts in our house, then I'm going to try my darnedest to balance it out with healthy choices for most everything else. 

 I also happen to be one of those stubborn moms who refuses to coddle to her children's food fetishes.  If they don't like what we're having for dinner, then too bad for them.  They need to eat at least a couple bites and then fill whatever hunger pangs are still left with leftovers and/or any fruit or vegetable they can find.  No one ever leaves the table hungry, but no one gets a made-to-order substitute meal either....not even a PB&J.   It may sound harsh, but it works for us.  The kids know the rules and we only very rarely have any dinner-time stress at our house. 

Spencer's Background:
Despite having grown up with whole grain foods as a regular part of his diet and the aforementioned dinner-time rules, Spence has always been one of my pickiest eaters.  He is the only one in our family who disliked when I started the recipe blog, since it meant we were trying new recipes several times a week, instead of sticking to the same rotation of 20 recipes.  He's also the only kid who has a meal that he absolutely refuses to even take a bite of....fajitas.  He still doesn't get a substitute meal, but I gave up years ago trying to get him to take a bite of them. 

Despite all his pickiness though, when presented the right foods, Spence's appetite historically has lived up to the teen boy reputation in every way.   Bags of chips have had to be hidden, frozen treats of any kind are devoured, and baked goods are lucky to make it even 24 hours when he's around.  Before his diagnosis with leukemia however, I noticed that his appetite was not as robust as it had been.  Spence being my first-born though, I chalked it up to the fact that  perhaps he just wasn't growing as quickly as he had been.  We had a big "aha moment" when we discovered that he had leukemia.

Now he's in his 3rd round of chemo and has steadily lost weight over the course of his treatment.  He's now 5'9" tall and barely weighs 120 lbs.  The docs really, really wanted him to beef up while he still felt okay between rounds.    They prescribed appetite stimulants, gave him doctor's orders to eat fatty foods, and basically told him to stuff himself silly with whatever foods he felt like eating.    But it's not working.

Currently he feels okay and yet is still eating like a bird.   Nothing sounds good, especially hospital food and now he's even getting sick of most fast foods.   We're running out of ideas to get him to eat and know that he's likely to start feeling cruddy any day now as the side effects of the chemo kick into high gear. 

Our Solution on How to Feed a Cancer Patient: 

Throw any and all food ideals out the window and bow to his every whim and fancy. 

He wants me to make him Turkey Wafflewiches ...again?  Fine! 

He wants me to drive all the way to Dairy Queen and buy him another Butterfinger blizzard?  Great! 

He wants us to stop at yet another fast food restaurant on the way to the hospital?  Yay!

He utterly refuses to eat a bite of his salad?  Okay. (I guess)

He wants us to hike to the top of Mount Everest and make all his food into cute happy faces?      My pleasure!  



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Food He Actually Still Likes
Eggo Waffles
Hard-boiled eggs
Pizza--especially homemade
Candy (this one is waning though)
Chocolate milk
Cookies
Turkey Wafflewiches
Butterfinger blizzards
Fast food (when he's in the mood)

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UPDATE: 
  • Apparently Spencer's rash is lasting long enough without letting up that the docs are now convinced that it actually IS due to a medicinal allergy.  So how do you figure out which of the gazillions of meds he's been receiving is the one he's allergic to?  By process of elimination, they've determined that the likeliest culprit at this point is the Bactrim, which is an antibiotic given to him every Saturday and Sunday as a preventative measure against infection.  He's been receiving it the entire course of his treatment, but they say it's not unusual for it to take time to build up enough in his bloodstream to start causing issues.  They'll replace the Bactrim with another antibiotic which will be administered intravenously once a month.    Spence is sure hoping that the Bactrim leaves his system soon.  He's tired of being red and itchy. 
  • With three different meds that he's now allergic to (penicillin, ketamine, and now Bactrim), he's definitely going to need a medical alert bracelet when his treatment is done! 
  • Ellie's stayed home from school today and yesterday while she recovers from a nasty cold.  We're keeping her far, far away from the hospital in the meantime. 

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I thought a good food quote would be perfect for tonight's post: 

"If you ate pasta and antipasto, would you still be hungry?" 
                                                                                                        ~Author Unknown

Monday, March 26, 2012

Bonus Day with Spence

To a teenage boy who's been cooped up in the hospital for an entire month, having a few days of freedom is  a pretty exciting event.   He knew his ANC (immune system) was good and so it was with a determination to live it up the best he could,  that Spencer's week at home was jam-packed with activities from morning until evening.  Between chilling with friends, hosting "parties", working (in an easy capacity) on a service project, and attending school and church sporting events, there really wasn't loads of time left for good old-fashioned family time.   We squeezed in a couple of family-only activities, but for the most part we didn't see a whole lot of Spencer during his week at home.  

So last Monday when the week at home had passed,  we repacked our bags, took him to the clinic, and fully expected him to be readmitted to the hospital.  We were discouraged when they told us preliminarily that his marrow results were abnormal (which later proved to be incorrect) and that they didn't want to readmit him until they figured out what to do about his treatment, but after thinking about it we got pretty excited about the "bonus day" we had with Spence.  Since he thought he was going to be in the hospital, he didn't have any plans to take him away.  Additionally Mondays also happen to be early-release days for the elementary kids, which made it the perfect culmination of happenings for a spontaneous family day together on the town!

When asked how he wanted to spend his bonus day, he without hesitation requested to go putt-putt golfing.  We knew the rec center courses weren't open for the season yet, so we did a little research and found this little gem in Herndon.  Considered one of the best courses in the country, it proved to be a fun adventure for the whole family!

We let the four oldest go on ahead, while we stayed back to golf with each other and to patiently wait for Ellie.  The golf course was several steps up from the normal putt-putt courses that we're used to and great fun was had by all. 
Ellie was only scared a little by the snapping crocodile, roaring wild pig, squirting frogs, crazy monkeys, and creepy tomb that we had to walk through, but when we passed those she was quick to join in the fun and the laughter!
 

In fact, by the end of the course she was so used to all the beasts, that she decided to join them for a while. 

I especially enjoyed seeing these two renewing their strong friendship.  Through the entire week, Spence and Cam stayed up late together, got caught up on their shows together, shared funny stories from school and church, and just in general enjoyed hanging out together again. 

Right before we left, I got the grand idea to try out the timer on my camera which I had just barely figured out how to use.  Although we'd just had family photos taken earlier in the week, I was excited, for once, to capture a photo of us all together in action somewhere. 
Afterward we dropped Cami back off at school for her lacrosse practice,  went home, ate dinner, and had a normal night at home.  Bright and early the next day we brought him back to the clinic where we learned that his marrow results were actually normal, then ran a quick errand, and took him straight back to the hospital for another month! 

An afternoon of mini-golfing together may seem like a small thing, but to a family starving for a little normalcy, this bonus day together was just the healing salve of laughter and togetherness that we needed.

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UPDATE:
  •  Docs treated Spencer with more Benadryl for his rash and itchiness that continued today. 
  • 2-1/2 hours of tutoring...Spence was so excited!  (sarcasm alert)
  • Spence's weight is down (55.4 kg.) and his phosphorous levels are high.  We're trying out darnedest to keep the boy well fed with practically anything he requests to eat, but it's beginning to feel like we're feeding a picky toddler who turns his nose up at everything and eats only tiny amounts!
  • I swear I'm seeing the beginnings of dark hair resprouting on Spence's head.  My guess is that it will fall out again with the effects from round 3 chemo kick into gear later this week, but it was fun seeing it pop through again.  Spence was just relieved that it wasn't growing back blond or red, like some of the post-cancer hair regrowth stories he'd heard. 


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"The happiest moments of my life have been the few which I have passed at home in the bosom of my family."                                                                                                     ~Thomas Jefferson

The Dress

Although I don't consider myself an overly sentimental person, I do find that I get attached to some random items here and there that eventually become heirlooms.  Take this cute little dress for instance.  My aunts Marva and Valerie made it for me when I was a little girl, along with a matching doll dress and homemade doll.    The colors and style of the dress are reminiscent  of Holly Hobby style, which was popular back in the day.   I absolutely loved it and remember even wearing it to school sometimes. 

Fast forward thirty plus years and although it's a little more worn now, my own girls love the dress like I did.  They're not really familiar with Holly Hobby, so to them it's a pioneer dress.   Cami and Emma  have each taken their turns wearing it on a regular basis,  as a dress-up for they're  playing that they live in "old-fashioned" times.    This past week it made the complete circle when Ellie put it on for the first time.  It fits her perfectly and it melted my heart to see her wearing it.  I wish I had a picture of Cami in it too, but sadly I can't for the life of me find one, so this will have to do.... 

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UPDATE
  • Spence is covered with an itchy, itchy rash, but since he hasn't had any new meds today, the doctors are 100% unconcerned.   Even in the hospital, Benadryl is the solution. 
  • Spencer's chest pain seemed improved today.
  • Church today was a wonderful, albeit  emotionally exhausting experience for me.  I came home and took a long nap without even taking my boots off.  People who know me well, know that napping for more than 15 minutes is quite a concession for me.   Concession or not though....I needed it (the nap and the spiritual upliftment)!
  • We ate dinner, had root beer floats, let Ellie open a couple more presents, and enjoyed family home evening at the hospital tonight.  We all started the night a little grumpy (fasting does that sometimes), but felt much better after some good food and a lesson about God's grace. 
    Thanks to the Ransoms for a yummy break-the-fast dinner and this fun keg of root beer.  The kids (and adults) loved it!
  • We've been playing some rousing games of Jenga lately (Thanks Mr. S.)!  Spence loves to take out the riskiest blocks first to make the game interesting. 

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"If we had no winter, the spring would not be so pleasant: if we did not sometimes taste of adversity, prosperity would not be so welcome."
                                                                                                                                                - Anne Bradstreet  (thanks Cynthia C.)

Sunday, March 25, 2012

Meet my family...


There are 5 girls (from left: AnnaLisa, Heather, Mom, Kristina, Lara)  and 5 boys  (from left: Matt, Tim, Dad, Nate, Pete).    I am the oldest and wisest of the siblings and can still strike fear into the hearts of my sisters with a glare and a little flick of my pinching fingers. 

We now live scattered around the country, but deep inside we all still consider ourselves Minnesotans at heart.  Put us all in the same room and youbetcha we can whip around a good Northern accent and toss around some cold weather stories like nobody else.  In fact my brother Pete, now a father of four cuties, still loves to reenact the explosive Arctic blast of air that came through one year by jumping spreadeagled off ledges while yelling, "Arctic blast!" like he did when he was 8. 
Actually I stretched the truth somewhat when I said that we were scattered all over the country now.  While it's true that Kristina and Nate live in California and my parents and Tim live in Utah, it's also true that everyone else lives within an hour of us!  With 5/8 siblings and 10/12 grandkids living close by, we definitely hold some serious sway here in the DC area!

They think they all moved here because of the mild weather and strong job market, but deep down everyone knows that the real reason more than half of the Crain family lives nearby is to be closer to Cami's gourmet cupcakes and Emma's to-die-for peanut butter chocolate chip cookies.

Although we had more than our fair share of squabbles in our younger days, as adults we are pretty tight knit.  Rarely a day goes by that I don't talk to at least one member of my family and those of us that live nearby try to gather together monthly for dinners and holidays. 

On January 10th I dropped the bombshell on my family when I told them that Spencer had leukemia.  I hadn't really ever mentioned Spence's health woes before and since nothing anywhere near as serious as cancer was even on our own radar screens, it came out of the blue for everyone.    Within a couple days my mom and sister Heather were at our doorstep ready to roll up their sleeves and help any way they could.    A week or two later, my dad came too.  Matt, Pete,  and families came frequently for visits.   AnnaLisa started helping more than she already had been.  

In other words, they not only helped to alleviate the day-to-day stresses in our lives, but they also helped to keep life as routine as possible for the rest of the family. 

While we were busy with Spencer, the kids were attacking Uncle Matt....


Snuggling with Grandma...

Playing Beyblades with Aunt Heather...

Chilling with Grandpa...

laughing at Uncle Pete....

and being silly with Aunt AnnaLisa....

Luckily being at the hospital didn't prevent Spencer from joining in the "fun" as well...
I am pleased to announce that, in all the extra time we've been spending together, that I haven't once had to inflict any of my big sisterly tortures on any of them.  That is other than snapping photos of them while they slept.  ;)

In all seriousness, my family has been a wonderful blessing to us through these last couple of months  and I just wanted to publicly thank them for their love and support!   LOVE YOU!

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UPDATE:
  • Spence is still experiencing chest pain, but luckily it is somewhat reduced from yesterday.  Mostly it hurts when he takes a deep breath or moves around much. 
  • Today was his last day of receiving chemo.  It's a shorter duration than the first two rounds, but the chemo is much more intense, so it's still expected that he'll start feeling cruddy sometime next week. 
  • His weight has been staying steadily around 57 kg. (125 lb.) for the last few weeks.
  • Adam and Aunt AnnaLisa went to the Harlem Globetrotters game today.  With the tickets purchased a few months ago, it was an outing originally meant for Spencer and AnnaLisa, but since Spence wasn't available Adam was happy to take his place.  He came home laughing about all the players' fun tricks.  My sister AnnaLisa is so awesome to plan regular one-on-one outings with each of my kids. 
  • Cami and I went out to eat with friends and then to the YW broadcast tonight, where we got to listen to some amazing inspirational messages. 

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"Taking life by the yard is hard,
but life by the inch is a cinch. "
                                                                                           President Thomas S. Monson


Saturday, March 24, 2012

A Birthday Girl

Seven years ago on Friday, we welcomed this little cutie in our home:  

 We'd had a hard time deciding between Abigail and Eliza for her name, but after spending a little time in her presence knew she was supposed to be our Eliza Sandra and that we would call her Ellie.  From day one, the name seemed to suit her personality perfectly. 


She has a cheerful and creative personality and loves connecting with people.  She wears a perpetual smile and because of her laid-back tendencies is by far the least likely of all the kids to get grumpy. 


Her birthday celebrations this year are getting stretched out over a couple of weeks.  We had her traditional Daddy cooked birthday breakfast of crepes and Nutella on Sunday while Spencer was still at home, then she picked out this box of Cookie Crisps for her school morning breakfast.  She was pretty darn excited about eating little mini cookies for breakfast.

Another one of her classmates was sharing birthday treats the same day, so we opted against the fancy homemade cupcakes we usually make and went for these cute (and easy) store bought cookies!
She opened a couple of presents today (a dress and some Pokemon cards) and will open a couple others on Sunday when we finish celebrating her birthday together as a family here at the hospital.  We'll also eat her birthday dinner of choice together, Turkey Wafflewiches, which also happens to be a favorite of Spencer's.   


Speaking of Spencer...despite the ten year age difference between them, these two have always had a special bond.  They laugh a lot together and seem to have a connection than transcends the years.
Happy Birthday Ellie!
We love you!


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SEVEN RANDOM FACTS ABOUT SEVEN-YEAR-OLD ELLIE:

1.  She's been counting down the days to her birthday for weeks on end now.  
2.  Ellie LOVES stories.  She loves reading them, loves telling them, and even loves writing them. 
3.  She's the only one of my kids that doesn't love food.  Even as a baby, she wouldn't gain weight and we had to convince her that she wanted to eat. 
4.  Although I was induced and had the 2nd longest of all my labors with her, it was still by far the most pleasant of all my pregnancies and deliveries.  I had no morning sickness at all. 
5.  Ellie completely ADORES her school teacher!  
6.  Ellie has always had her own unique sense of fashion, which has often served as entertainment for our family.  Her current clothing trend is to wear dresses or skirts 9 days out of 10. 
7.  While creativity is a concerted effort for me, Ellie's brain naturally thinks creatively.  She frequently comes up with projects and ideas that would never even cross my mind.  

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UPDATE:
  • Spencer has been experiencing pretty significant chest pain today.  They've run a number of tests and determined that it's nothing to be concerned about, so now it's just a matter of treating the pain.  They believe it may be pleurisy, which is a harmless inflammation of the chest cavity that just needs to run its course.   Unfortunately the best treatment for pleurisy is ibuprofen, of which cancer patients aren't really allowed to have because of their low platelets and other blood levels. 
  • Cami scored her first goal ever in her JV lacrosse game yesterday!
  • Today I picked up a bunch of our old videotapes from 2002-2004 which I had taken to Costco to get digitized.  I can't believe how cute and little my kids were! 
                                                                Adam and Emma (2003)
  • We've discovered that Pizza Hut will deliver pizza straight to the room!    I am sensing they will be visiting us a few more times before his treatment is done. 

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Heavenly Father, are you really there?
And do you hear and answer every child's prayer?
Some say that Heaven is far away
but I feel it close around me as I pray.


Pray, He is there
Speak, He is listening
You are His child
His love melts around you
He hears your prayers
He loves His children
Of such is the Kingdom, the Kingdom of Heaven
  Janice Kapp Perry
(thanks Candice)

Thursday, March 22, 2012

Mid-Week Update


UPDATE:
  • Spence is in a new room! He's in room 510 and his phone number is 703-776-4510.  Apparently his old room is receiving a lot of phone calls for him still, so feel free to spread the news of his new digs around!

    I'm pleased to announce that Spencer's packing skills have improved over the years. This time he brought to the hospital all his electronic equipment, a few books, his blanket, 6 pairs of shorts, 8 t-shirts, 1 long sleeve shirt, 0 pairs of underwear, and 0 pairs of socks. How is that an improvement? Well it's at least a little better than the time when he was 6 or 7 when before going on a couple weeks long road trip, he loaded his bag with books, toys, and a couple random t-shirts.  
  • Spence is on his second day of chemo.   
  •  Dosages for the two types of chemo he's receiving  this round (ara-c and etoposide) are much higher than they've been previously and so it'll be extra important to try to keep Spence healthy.      Please stay far away from Spencer if you are sick at all!
  • Glen and I visited Johns Hopkins hospital in Baltimore today.  We were hoping that the visit would help us solidify our leanings in the decision making process about whether to do a transplant, however we are now more confused than ever and are leaning exactly opposite of where we were yesterday.    Having said that though, we really, really liked the transplant doctor at Hopkins and thought it was cool that if we did proceed with transplant and if we chose Hopkins that Spence would be in a brand spanking new wing of the hospital.  Based on projected timing of a possible transplant he could even potentially be the first patient ever in a room. 
image from BaltimoreGrows.com

  • (This is old news for those of you who are friends with me on Facebook.)
    The phone rang this morning and the caller ID read "Childhood Leukemia".  Thinking that it had the potential to be something important, I picked it up and was surprised when the lady went off on a random spiel about why I should  donate to support kids with leukemia, many of whom "may not live to see their next birthdays".   Although not normally much of a crier, especially in front of other people, I was really surprised when I bawled like a baby at the realization that my son was one of the poor pathetic children she was soliciting donations for.  I was shocked at how hard it hit me, but in the end felt more sorry for the poor random telemarketer who I am sure does not get paid enough to console sobbing mothers of children with leukemia. To preserve future mascara applications and my sanity (fleeting though it is), I have decided that I will avoid any future phone calls from cancer societies of any sort.
  • In the way of much better phone calls, Spence got a phone call from a BYU football player today.  I forget his name, but they chatted for about 5 minutes or so. Thanks to Grandpa C. for arranging that!


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

                                                                                                  Neal A. Maxwell  (Thanks Desa!)


Wednesday, March 21, 2012

A Big Decision

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

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

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

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

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

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

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


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UPDATE:
  • We had a very fun bonus day with Spencer at home.  Pictures of our adventures will come soon.
  • Spencer was readmitted to the hospital this morning and is in room 510 (a few doors closer to the entrance from his last room)!  Our new phone number is 703-776-4510. 

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

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

                                                                                        Proverbs 3:5-6

Sunday, March 18, 2012

Top Ten of Being Home

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

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

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

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


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

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

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

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

3--Spence being able to participate in some of teen social scene for a while.  Between the time he spent with his friends from school and church,   he ended up spending a good portion of his time at home hanging out with friends.  I daresay it was as therapeutic for him as it was fun. 
2--Going to church all together!  I loved looking down "our pew" (the one in the back left corner where we've been sitting in for years) and seeing the whole family in a row!  Spence even blessed the sacrament today, which completely melted my heart.  

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


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UPDATE:
  • Round 3 starts tomorrow.  We'll let you know what room he's in after he's officially readmitted. 
  • Popular vote says that Glen is still taller than Spencer by a "hair". 
  • We're taking a tour of Johns Hopkins this week. 
  • Our family home evening lesson tonight was on being selfless and looking out for others.  It seemed apt in a time where people are showering us with service--big and small, that we would try to fill our lives with gratitude and seek for little ways that we can reach out to others right now.  

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Faithfully
Acknowledging
I
Trust
Him

(acronym from Kim B.  Thanks!)



You Tell Me...

Who's the taller of the two baldies in our house?
Glen still thinks he's got the victor's crown,  but I'm thinking it's too close to call. 

What do you think?

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UPDATE:

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

Round 3 of chemo officially starts on Monday.

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

Other than getting pinched by a teen son of ours at approximately one minute past midnight, we had a very fun Saint Patty's Day today.  Glen, Cami, and Spencer helped with a big service project/fundraiser at the church, while the younger kids and I did Saturday chores and played in the neighborhood creek.  Friends brought us some fun surprises and we got to eat a yummy green dinner from the Woodhouses!
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"When everything seems to be going against you, remember that the airplane takes off against the wind, not with it."

                                                                                                                                                - Henry Ford (Thanks Lisa E.)



Wednesday, March 14, 2012

I Love My Boys....

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

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UPDATE:

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

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

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


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

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