How Many High School Juniors Does it Take....

to convert this transformer back into a truck?

Well, when you're cute, bald,  and ask really nicely...

maybe you can get four or five of them working on it for over half-hour...

and get it *almost* back to truck status. 


Spencer

Other than dismally failing at transforming a toy that says it's for ages 5 and up, Spencer is....

awesome! 

Sibling Love for Spencer

Today was the day....


the kids overcame their fears...

and we all got our blood tested to see if any of us might be a bone marrow match for Spencer. 

(Don't mind how completely exhausted I look in this picture.  I'm actually much more well-rested than I was earlier in the week.) 

Emma wins the prize for bravery when they had to poke her twice when the first one didn't work.

In order to get our blood tested, I had to register us all in the hospital.  I was kind of annoyed at the long process, that included us each getting hospital bracelets, but after we were all registered and they handed each of the kids a very generous goody bag, no one was complaining anymore. 

Especially Ellie...

and Emma, who decided she wouldn't mind getting her blood tested every day...if she got prizes this cool.   

FYI  Each sibling has a 25% chance of being a full match,  but it will take a few weeks to find out the results.  Of course, I will make an update when we find out. 

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Spencer

He celebrated his "week-i-versary" in the hospital by having a relatively quiet day, without any procedures and without as many day-time visitors now that school is back in session. 

He got some noise cancelling Bose headphones from his uncle, which he has pretty much dubbed the coolest thing ever.    I plan on borrowing them next time I want to take a nap.  

His friends came and hooked him up to Xbox Live.  I don't know exactly what that means, but apparently it's pretty cool too. 

We've met a few other Hem-Onc patients the last few days and it's been fascinating to hear their stories.  Obviously Spencer is one of the big kids on the pediatric floor, so the kids are fascinated with him and his big brotherly vibes.  We love watching the kids,  mostly bald and wearing masks, while they race, without a care, around the corridors on their trikes.  

most popular kid in town

Who would've ever thought that getting diagnosed with leukemia would make you the most popular kid in town? 

Since first announcing his diagnosis on Wednesday night, his hospital room has been filled with visitors....

Some of his school friends are close enough to walk to the hospital...

and they come, chat, and play xbox games (with the Xbox the FCHS class of 2013 purchased for him a day after his diagnosis).  You rock Jags! 

Our stake presidency came yesterday and again today (along with our Bishop) to give Glen and I blessings of help and comfort through this trial. 

Friends from church have a little further to drive than his school friends, but they come anyway....

talking, laughing,  and playing magic (the young men's favorite game).

To all of you visitors....
thank  you for not coming when you are sick, thank you for diligently using the hand sanitizer (even when it squirts you in the face), thank you for being positive, and thank you most of all...

 FOR HELPING SPENCER FEEL SO LOVED!!!!

(by the way, if you want a picture with you and Spencer, just let me know next time you come.  I sometimes forget to pull out my camera, but as you can see, you never have to twist my arm too hard to take a few.)

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Spencer

His blood counts continue to drop, as is expected with chemo. 

Today he was officially declared "neutropenic" which means he needs to wear a mask in the hallways, visitors shouldn't touch him, and he can't eat raw fruits, veggies, fast food,  lunch meats, soft cheeses, etc. 

He got another spinal tap today.  They are checking his white blood cells and injecting more chemo into his spine. 

He wasn't near so entertaining coming out of sedation as he was the first time, when he sat up, started ripping at tubes, and asking incessantly when he could go back to the room. 

He gets 10 hours of chemo tonight.

We are preparing for a head shaving party soon (if Spencer approves).  Let me know if you want to join us (either in person or by video). 

How Are We Doing?

In truth, we are okay. 

We've all cried more tears than we care to count in the last few days, but for the most part, this whole leukemia thing is becoming like a job to us.  We take notes.  We ask questions.  We answer phone calls and emails (when we can). We talk to doctors.  We try to keep other people up to date.  We try to keep track of all his meds.  All this, while attempting to take care of ourselves and keep the other kids' lives as normal as possible.   It's exhausting, but good to be engaged. 

One thing we're done with though is researching online.  We will still look up a procedure or medicine we want to know about, but we're done with blanket leukemia research.   There are way too many depressing statistics and we've gotten to the point, where we simply don't want to talk about stats anymore.

Spencer is Spencer and the treatment will work.   Or it won't. 

But either way, we have faith that God's hand is ever present in this.   And we need look no further for evidence of this, than at Spencer himself. 

A week ago today, he was sitting in the cardiologist office, so annoyed that he needed to get a blood test.   He probably complained to me a dozen times about how much he hated needles and did not want to get his blood drawn.  Now here we are a week later and he's sitting in a hospital bed with a scary diagnosis, feeling kind of lousy, he's been poked and prodded countless times and, yet he is calm, uncomplaining, and filled with faith. 

Not discouraged.  Not resigned.  He is truly at peace. 

 "Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid."  John 14:27

And we feel that same peace.

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Spencer
...received 2 units of blood yesterday and got blood splattered all over him in the process.  I'm glad Glen was there when that happened.  Ew! 

...the blood immediately helped him feel much better and he did some laps around the Hem-Onc unit.

...his blood counts are dropping quickly

Today I Am Grateful...

--That we live a mere three miles away from one of the best hospitals in the area.  People from all over Northern Virginia come to Fairfax Inova for treatment and ofttimes getting here is a huge burden.  While Spencer may end up at Children's Hospital in DC, especially if he needs a bone marrow transplant, for now I am exceptionally grateful to not have a long commute to the hospital.  Additionally, his high school (and most of his school friends) are less than a mile away and church friends are 3-4 miles away, so I feel the proximity has definitely helped them to be able to stay connected better.   

--That we have good friends with kids similar ages to Emma, Adam, and Ellie who live five doors away from us.  The Tapps are only here in the area for 18 months, but their proximity to us and ability to help with the kids at a moment's notice is a true God-send. 

--That my sister, AnnaLisa, lives nearby.  Having someone that knows my kids' routines and the ins and the outs with our house is a big blessing to us. 

About Spencer today:
The chemo is starting to make his  blood counts drop, so he is getting pretty tired.

He likely will receive another blood transfusion today.  That will help with the fatigue.

He is still in good spirits and loves all the visits, but I think we need to work on keeping visits shorter (15-20 minutes) and making sure that there aren't too many visitors at the same time.   Someone was going to look for an online calendar or something that we could use to try to stagger the visits. 

He is a little congested, which has clogged up his ears.  Don't be surprised when you visit if he has to say, "Speak up Sonny!"   

Glen and I are going to let my sister stay with him for a couple hours today, so we can sneak out to church together.  The priest quorum will bring the sacrament to him. 

Still praying that we will find an in-family bone marrow match.  The blood tests are on Tuesday. 

sleeping arrangements

We have learned that, because of the type of leukemia that Spencer has, that he will not be allowed to have a roommate for the duration of his hospitalization.

We immediately took advantage of this knowledge and spread our stuff around the room.

Additionally, we cheered when we discovered that it also means that whomever is spending the night with him can sleep in the other bed.   

I never thought I'd say this, but the hospital bed seemed downright cozy. 

At least compared to the fold-out chair we slept on the first couple of nights! 


What's going on with Spencer tonight?
10 hours of chemo
and lots and lots of sleep (hopefully). 

Thank you for helping him feel so loved today.

Random Facts About Leukemia

• They do not give blood cancers, like leukemia, stages as they do for tumorous cancers.  They do, however, look for leukemic cells in the spinal fluid as an indicator of where it's at.  Spencer's results were mixed in that they did find some leukemic cells in the spinal column, but they weren't fully developed yet.  He will receive a few rounds of chemo injected directly into his spinal column in addition to the other chemotherapy, to try to zap what's in his spinal fluid.

• The color for leukemia awareness is orange.  The students at Spencer's school, in two days' time pulled together these ribbons for everyone to wear to a pep rally.  (The pep rally was for something else, but they wore these as a way to show school-wide support for Spencer). You rock Jaguars!!!!

• If chemo is not effective, then the next course of treatment is a bone marrow transplant. Glen, me, and Spencer's four siblings will get our blood tested for compatibility on Tuesday.   An in-family bone marrow transplant has a much higher rate of success than when from a non-related donor.  We're praying for one of us to be a match. 

• There are several subtypes of AML (acute myeloid leukemia), each with differing prognoses.  Spencer has the M5 subtype (monocytic). 

• In the hospital they call us Pediatric Hem-Onc patients.  (pronounced heem - awnk)  It's short for hematology/oncology. 

A couple other random tidbits:

• Friends of ours had a son with a brain tumor and upon coming to visit us she realized that we are in the exact same room as her son had been four years ago.   It helped us to feel connected and it was nice to talk to someone else who knew some of what we're going through.

• For as prickly as Spencer sometimes got when I asked him to take out the trash before all this, he has been an absolute trouper, never once complaining about all the poking and prodding that he's going through.  I'm also impressed with how he is invariably kind and polite to all the nurses and even makes an effort to call them by name.  We have noticed that he is extra nice to one particular nurse who also happens to be young and cute.  :) 

• I had a completely average conversation with someone yesterday and for a few minutes I felt almost normal again! 

The Last Few Days...

 Here's a little glimpse at the last few days of our lives: 

Tuesday Night:
We learn that based on blood test results, that Spencer likely has leukemia
We call our Bishop and home teacher.
Glen and Brother Smith give Spencer a priesthood blessing. 
Spencer is admitted into the Pediatric Hematology/Oncology floor of the hospital
IV was placed into his left arm
Nine plus vials of blood were drawn for further testing
Fluids are given continuously
Spencer received 2 units of blood to make sure he is strong enough for his coming procedures.
All in all, it was a restless night with getting used to all the beeping monitors and nurses coming and going all night.

Wednesday: 
More blood is drawn (thankfully out of his iv line, so there weren't any more pokes)
We meet the oncologist who will be in charge of his care
Spencer's bone marrow biopsy is moved from 2:30pm to 11:00am. 
Spencer was wheeled down to the pediatric sedation department and sedated while I watched.
They escort me to a waiting room where Glen joins me and I bawl and bawl. 
The biopsy is completed and they inform us that Spencer had an adverse reaction to one of the anesthesias that was used.  So now his medical alert file says he allergic to Ketamine and penicillin.
The oncologist calls Glen and I in for a conference and confirms that based on the bone marrow biopsy, that he does have Acute Myeloid Leukemia.
We learn that AML is a less common and more aggressive type of leukemia. 
She outlines an in-depth aggressive treatment plan which will include several months of in-hospital chemo and a possible bone marrow transplant if necessary. 
Spencer's best friend, Ryan, comes to visit and they agree on a plan for letting their friends know about his diagnosis. 
We agree that now that his diagnosis is confirmed, that it's time to share it with people. 
The anesthesiologist meets with us and discusses more procedures that Spencer will need. 
We sign paper after paper after paper, each with its own list of possible horrible side effects, the least of which will be losing his hair. 
We go forward with trusting our first-born son to the world of medicine. 

Thursday:
Spencer has an iv line surgically implanted into his chest (it's called a "central line").  This is a long-term iv through which the chemo will be administered. 
He has a spinal tap to determine whether there are leukemic cells in his spinal fluid.  We haven't heard  the results yet. 
Spencer is showered with love...via messages, gifts, and visits. 
Chemo is started.  So far he is tolerating it well. 

Friday:
More chemo.
More friends.
We feel loved.

Spencer's Facebook Status

This was Spencer's facebook status within a few hours of his diagnosis and it touched a lot of people with its profundity.  What an example of courage and faith.

"I believe God not only resides in the joy and new life of spring, like a reward if we make it through the winter. We can find him in every season, if were willing to look. I just happen to be in a tough season right now. Its winter for me. I trust a new and joyous season is on the way, God will bring me spring when he is ready. He just wants to meet me in the winter right now"

  The quote came from here:  In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle - injury, illness or other hardship - they tapped their inner strength and found resilience they didn't know they possessed. This week, Heisman Trophy winner and former NFL player Danny Wuerffel talks about his battle with Guillain Barre Syndrome, and why he left the NFL to run Desire Street Ministries.

How We Found Out

 Glen, Spencer and I have discussed that, in order to keep friends and family up to date with Spencer's treatment for Acute Myeloid Leukemia, that we will post frequent updates here on the blog.  Please feel free to pass the blog address along to others who may be interested in following along with Spencer's story. 

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The first hint that anything was wrong with Spencer, was a day back in October.  Spencer had an all-day lacrosse tournament that he was excited to be participating in.  He'd had a great summer season and he was looking forward to playing during the fall.  He got a ride there with a friend, then Glen met them there a little later to watch the games.  Shortly after the first game started, Spencer randomly threw up and could not continue playing any of the games.  They came home hours earlier than expected. 

He was in the midst of a bad cold at the time, so we chalked it all up to being extra mucousy from that and never thought another thing about it. 

Until a couple weeks later it happened again.  We were perplexed, but still assumed it was remnants of the cold that caused it. 

Long story short, it kept happening, but it was still infrequent enough that we weren't overly concerned yet.  I did keep researching online, but because his symptoms didn't occur any other time that when he was running, we literally couldn't find anything that it might be.  Every site we saw just said to not run so hard. 

Finally he started having frequent headaches and seemed a little more tired than usual, so I brought him to the pediatrician.  We saw a different doctor that day than we're used to and the doctor really focused her attention on the headaches.  After an examination and series of questions she determined that the headaches didn't really sound like anything out of the ordinary and that the vomiting, although he'd lost 15 lbs. since June, was probably just due to previously undiagnosed allergies.  She recommended he take Claritin. 

The Claritin actually did help the headaches, but the vomiting continued and Spencer was getting to the point that he couldn't really exercise anymore.  

Finally, last Sunday I looked up at Spencer as he sat with the other priests blessing the sacrament and thought that he looked pale.  I made another appointment with the pediatrician and resolved that we would not stop until we figured out why a perfectly healthy teenager could go from running a 5:20 mile to not being able to make it through warm-ups without throwing up. 

We got a different doctor this time and although she was one of our favorites in the practice, I was still surprised at how much time she took with us and how she seemed to share our resolve for getting to the bottom of everything.  She immediately made us appointments for a cardiologist and a pulmonologist, just to rule out heart/lung issues. 

On Monday Spencer went to the cardiologist where they did an EKG and an echocardiogram.  Once again, I was somewhat surprised at how genuinely attentive the doctor was.  The tests did not find anything too problematic, but the cardiologist mentioned that his heart was slightly enlarged.  He assured us that that in and of itself wasn't overly concerning, but that it could indicate him having anemia or something else going on in the blood that would cause his heart to have to work harder.  He noted that Spencer seemed pale, gaunt, and had slight yellow undertones to his skin. After consulting with the pediatrician, he ordered a whole series of blood tests.  We went to the lab, had his blood drawn and went home. 

Tuesday, I took him to the pulmonologist.  They did a bunch of breathing tests and found him to have slightly depressed lung capacity, but once again, not enough to be concerned about by itself.  Then the doctor mentioned that Spencer's throat looked like it had white patches on it and that he should get a strep test.  She apologized and told me that they did not do throat cultures there, but that she'd talk to our pediatrician and see if they could squeeze us in quick.  At this point we were relaxing a bit.   We still hadn't heard about the blood tests and that the cardiologist and the pulmonologist had been unable to find anything significant. 

About half hour later the pulmonologist came back looking noticeably more serious, then, in a change of heart, offered to take the throat culture there in the office.  The remainder of the visit was short and afterward she handed me a copy of Spencer's chest x-ray.   I still wasn't alarmed, but looking back now, I am convinced that our pediatrician had shared the news with her at that point, and that was the reason for the change of heart on the throat culture and the unexpected returning of the lung x-ray to us. 

Afterward we returned home, Spencer went off to hang out with a friend, and I made dinner.  Then about 5:00pm the pediatrician's office called.  She beat around the bush for a minute, told me to sit down and brace myself, and in the next instant said the words that would change our lives forever.  Three hours later we sat in a pediatric oncology room in the hospital wondering where this journey was going to take us. 

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January 10, 2012: The Day Our World Changed

It was a beautiful day on Tuesday.   It had snowed a little on Monday evening, but the temps had shot back up into the 50's and the sun was shining.    I decided to skip Institute to work on my upcoming sacrament meeting talk.  I kept getting interrupted as I worked, but for the most part it turned out to be a blissful 1-1/2 hours where I listened to uplifting music and studied conference talks and scriptures.  This video went along perfectly with the topic of my talk and touched my soul in a particularly meaningful way that morning.   

Little did I know then, how much that solitary hour-and-a-half was preparing me for what was to come later on that day. 

Long story short, a few hours later I received a phone call that would change our lives forever. 

Results from some blood tests had arrived and we found out that Spencer has leukemia. 

I have no idea what the coming weeks and months will bring to him or our family, but I do know that   in the 24 hours that have passed since we found out, that our family has already felt overwhelmed with the comfort and peace that only God can bring. 

One Random January Day

On January 7th the temperature was a balmy 70 degrees...

and we...

*took down the Christmas decorations  :( 

*went for an 8-mile run (wearing shorts)

*did our Saturday chores

*made and copied the programs

*fixed the attic ladder which had broken and gotten stuck in the down position in the middle of our hallway (Glen rocks the dremel drill!) 

*Spence and Cam made some "falling videos" with their friends, by videotaping themselves randomly and dramatically falling in public places

*started menu planning for next week

*went to Ruby Tuesdays for dinner

*watched episodes #6 & 7 of Once Upon a Time (thanks for introducing it to us, Matt & Karey)

Anniversary Date to Charlottesville

 The longer Glen and I have been married, the mellower and mellower our special days get.  And by mellow, I mean boring.  

This year was particularly bad.   

My birthday was a minor flop, Glen's birthday was an epic flop, and our holiday celebrations almost non-existent. 

So it was with these celebratory flops fresh in our mind, that we decided to celebrate our pseudo-golden anniversary (18 years on the 18th of December), with a little more flair than our normal  dinner at Sweetwater and a movie date. 

We were so gung-ho that we decided to go on an overnight trip to Charlottesville.   

One night, two hours away from home!  Yeah, we go big. 

We had little planned, so mostly we did a lot of wandering through downtown Charlottesville, stopping whenever some store or restaurant caught our eye.  As per our usual style, it was definitely on the laid-back side of things.

So laid-back, in fact, that I didn't think to bring my lactose pills with me to breakfast and I didn't think to ask until the very end of the meal if the authentic Southern grits  I ate had any cream in them. 

They did. 

And so it was that our big anniversary trip turned into let's-see-if-we-can-locate-every-single-bathroom-in-Charlottesville kind of date, rather than than the romantic stroll through town that we'd planned.

On the upside though, I'm pretty sure that it will be hard to beat 2011 for lame-o celebrations.  Next year's gotta be better....right? 





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The World's Most Boring New Year Celebrations

I have no doubt that a few of my more extroverted friends and family will cringe at the recap of this year's uneventful holiday celebrations (if they could even be called "celebrations"): 

The closest thing we got to going to a holiday party this year, was when I met up with 2 friends one morning and took the kids to Chuck E Cheese.  No food, only tokens. 

Then we spent New Year's Eve night at home, looking at recipes (me), copying the programs (Glen), and watching a movie (the kids).  At 10:30, when the kids were starting to act a little grumpy,  we did a sparkling cider in paper cups toast, then shlepped the kids off to bed.   Whereafter Glen and I spent the rest of the night fighting sleep while waiting for Spencer and Cami to return from the dance.

But guess what?  It sounds anticlimatic, but I frankly didn't mind a bit this year.  It was nice, mellow, and laid-back....just what I needed after a crazy December! 

Happy New Year!

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