Top Ten of Being Back in the Hospital

With another four weeks of hospital life staring us in the face as Spencer starts his second round of chemo, Spencer and I decided to compile a top ten list for the perks of hospital life.  In no particular order, here's the list we came up with:

10--Faster internet than home (when it's working)--I actually save uploading/downloading big files for when we're at the hospital, since it's way faster than home. 

9--Video games that Mom won't let me play at home --since both video games and young cancer patients have been pretty scarce in our house before this year, we're still trying to figure out what's what with the aforementioned young cancer patient playing certain video games given to him by friends.     

8--Endless supply of candy--Spencer has a couple of friends, an aunt,  and a Dad bound and determined that his candy jar will never go empty.    Spencer likes the Starbursts, Glen likes the Mikes and Ikes, and Lara likes the dark chocolate (you know since it's a health food and all that).

7--The ice machine!  If you're looking for ice pellet perfection....look no further than the 5th floor nutrition room at Fairfax Inova Hospital!  I think Glen actually wouldn't mind if I got him one of these for his birthday.  :)
6--Visits from cute girls--some related, some not!  

5--More time to read (especially the scriptures) --at home my life is filled with laundry, errands, taking care of kids, cooking, chores, etc, so I enjoy the quieter time in the hospital, especially in the mornings when Spence sleeps in (see #3), to get some reading done.

4--The ceiling tiles decorated by pediatric hem-onc patients when they are finished with their treatment.  They give us hope for the day when Spencer can contribute his own ceiling art. 

3--Sleeping in.  At the hospital, it doesn't really matter what time we get up, so we all take advantage.     I still like to get up at a somewhat regular, fairly early time (although not as early as when I'm at home and get up with Cami for seminary), but Glen likes to take his days at the hospital to catch up on missed sleep.  Spencer just likes to sleep as much as possible!

2--Very nice notes!...although I'm starting to get a little worried that his ego might get inflated while he's here.... 

1--The awesomely awesome massage chair in the HOPE  room, which is just what Dr. Lara orders after a night in the hospital!  The massage is intense and as close to a human massage as I've ever felt in  a machine.   

Did I mention that it's awesome? 

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

Update

Great news!  Spencer's bone marrow biopsy came back clear of leukemia cells.  It doesn't change the course of treatment at all, but it does show that so far his body is responding well to the chemo. 

The homework has begun and it's A LOT!  Seven hours with a tutor each week plus homework on top of that.  It's way more than we expected, but we hope that that means they'll be more lenient when he's not feeling well. 

Thank you to friends who are fattening Spencer up  for Round 2.    He's up to a big whopping 58.2 kg (128 lbs)  now! 

***************************************
"We aren’t thankful because we are happy.
We are happy because we are thankful."

~Unknown

Back to the Hospital and Valentine's Day!

For the last few days, Ellie has been saying that it was going to be a happy and sad Valentine's Day this year.    Happy, because of all the candy and fun.  Sad, because it was the day for Spencer to head back to the hospital.  And she was right.

Here's a little glimpse at our Happy/Sad Valentine's Day:

I took advantage of being home for the week and, with my sister Heather, put some of my creative juices to work making these 3D Valentines for the kids to take to school.  It may be a stretch to call it creative, since the idea for these are all over the internet, but it was a labor of love and a fun distraction for me over the last few days. 

Last night the Kulbeth's brought us over some yummy Valentine cupcakes--too bad the topping didn't survive to see the light of day. (...CAMI!!!) 

This morning Aunt Heather opened up her niece hair salon for business and went to work creating the doggone cutest Valentine hair-dos you've ever seen! 

Emma's do♥...                                                                      Ellie's do♥...

Ellie had to rouse him from a sound sleep at 8:30am to do it, but after her hair was all "heartified" by Heather she went in to bid Spencer adieu before he headed back to the hospital today.

After the kids got off to school, we spent a rushed morning of repacking and doing as much laundry as possible before shlepping Spencer up to the CCBD-NOVA clinic to get his blood checked.  (CCBD-NOVA is short for Center for Cancer and Blood Disorders of Northern Virginia--just in case you're not familiar with that widely used acronym). 

Then after a gloriously relaxing week at home, we drove him straight from the clinic to the hospital where Spencer was readmitted to the hospital for round 2 of chemo.   After checking in, we took him to the pediatric sedation "suite" where he got his bone marrow biopsy and spinal tap. "Suite" is a kind way to term a dark, windowless room in the bowels of the hospital. 

 Then, in a "Welcome back to the hospital" type of way, they informed us that there was no room for him on the pediatric hem-onc floor yet, and that we  got to wait, wait, and wait some more until a room opened up!  6+ hours later, we had grown weary of looking at the painted blue sky and pacing the floors in the dark room, but thank goodness for Glen's delivery of some Five Guys for dinner, spotty internet coverage and free access to Goldfish crackers, so we stayed sane....almost. 

Meanwhile at home, the kids were spreading out their Valentine haul and determining who had the best (most candy) Valentine stash.  Too bad a bucketload of homework kept them from getting distracted for too long. (Thanks for taking the pictures, H.)

Back at the hospital,  Spencer finally did get up to his room at about 7:30 tonight and was thrilled to discover that he's back in the same large, unshared room as before (#513)!  Visitors bearing Valentines and goodies showed up almost immediately upon our arrival in the room.  Thank you for making him feel loved! 

And what would a Valentine's post be without a shout-out to my own Valentine?  

Glen is still just as kind, generous, hard-working, thoughtful, and hot as the day I met him and I can't imagine going through all this without him by my side!    Love you, Hunny!  ♥

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

Update

Spence's ANC was over 1500 today, which means that he can eat fast food again (until the chemo brings his counts down again).  After not being allowed to eat all day before his procedures, he eagerly scarfed down the Five Guys burger Glen brought to him in about 60 seconds flat. 

He is also happy to have one of his favorite nurses tonight (and another favorite on Wednesday)! 

He had a great week at home and we are already looking forward to his next visit home in another month. 

We've discovered the hard way that you shouldn't send important packages to the hospital.  If you're sending a package or card, I recommend sending it to our home address or delivering it in person. 

If you want to come visit him, please call the room first, to see if he's available and feeling up for visitors.  703-776-4513.

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

"Pray for the love which allows you to see the good in your companion. Pray for the love that makes weaknesses and mistakes seem small. Pray for the love to make your companion’s joy your own. Pray for the love to want to lessen the load and soften the sorrows of your companion."

  Henry B. Eyring

Of Things that Matter Most...

I needed this reminder tonight: 

"...we would do well to slow down a little,

proceed at the optimum speed for our circumstances,

focus on the significant,

lift up our eyes,

and truly see the things that matter most." (Dieter F. Uchtdorf)

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

The inspiration for this post: 

Disclaimer:  There is no need to question my sanity...there was safe, solid ground just a few feet below where Cami sat on that ledge at the Grand Canyon. 

Slideshow About Leukemia for the Elementary Kids

Just a few weeks after we moved to our current house in August of 2001,  we sent Spencer off to the new elementary school to start 1st grade.  Although Cami was a preschooler and Emma was barely a year old,  I still remember being so excited to be a real room mom for the first time.  I made treats, I planned class parties, I helped the teacher, and I thought it was fun.  In the ensuing decade, I'm pretty sure I've been a room mom to at least one of my kids' classes every single year.   With the sheer number of our kids that have attended there and the fact that I'm in the school so frequently, means that the staff and the teachers at the school know our family pretty well. 

The morning after Spencer's diagnosis, I let Emma's, Adam's, and Ellie's teachers know about it, so that they could watch out for them during the day.    But because the diagnosis was not 100% official until the bone marrow biopsy was performed the following afternoon, I sent the kids off to school that morning and instructed them not to talk about it yet.  We just didn't want things getting spread around if there was even a sliver of a chance that it might not officially be leukemia.   

As soon as the biopsy confirmed the diagnosis, we knew it wouldn't/shouldn't be a secret anymore.  We had already called our families.  Then it was announced at youth group on Wednesday night, which meant everyone at church knew very quickly.  Spencer then posted it on Facebook, which meant all his school friends knew too.  Taking Spencer's lead, Glen and I posted it on Facebook too, so all of our friends knew then as well.  It seemed like in 24 hours time, the whole entire world knew about it. 

  Then a few weeks later, Emma's teacher emailed me about a little surprise a friend was planning for Spencer.  It involved having the kids in  Emma's, Adam's, and Ellie's classes at school combining together to make him something.  Although it was supposed to have been a surprise, they had decided to ask me about it, because she was concerned that no one at school knew about Spencer's leukemia and that Emma hadn't even mentioned it to her friends yet.  It was a little weird to me that the people at the school,  a place that had played such a big part of our lives over the years, still didn't know what was going on, but since Spencer hadn't been a student there for about 5 years it kind of made sense.  On the other hand, it seemed very strange to me that Emma never mentioned such a big part of her life to her friends. 

After talking to Emma about it, I realized that her and Adam thought that because we'd sent them off to school that very first morning and told them not to talk about it, that they truly believed that all this was meant to be a secret.   It seemed obvious to me that once the word spread (a mere 1/2 day after we told them not to share it) that they would automatically know that it was no longer a secret. That was not the case though, because both of them were whole-heartedly convinced that school was the one place they couldn't talk about it. 

After feeling rather sad about the misunderstanding and that they were keeping all this upheaval in their lives tucked inside them, I asked them if they were interested in letting their friends know.  They both agreed, so it was that this slideshow was made.  I made it as a way for them to share info about Spencer's leukemia with their school classes.   It contains basic facts about leukemia and presents it in a way that hopefully will not only convey the seriousness of a leukemia diagnosis without scaring them, but also let them know that someone with a serious disease is still the same old person underneath. 

It was originally a powerpoint presentation, but due to my ineptitude it doesn't contain any sound nor did it convert very nicely to slideshow format.  Here's a glimpse anyway:   

Update

Spencer went to church today.  He wore a mask and slipped in right as sacrament meeting started and bolted as soon as it was over.   I don't even think too many people noticed him there, but I loved sitting there all together as a family for the first time in over a month!

Spencer heads back to the hospital on Tuesday to begin his second round of chemo.  He'll be readmitted, then get his bone marrow biopsy and spinal tap that afternoon.  We'll let you know his new room number as soon as we find out. 

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

"Let us relish life as we live it, find joy in the journey, and share our love with friends and family. One day each of us will run out of tomorrows. " 

~Thomas S. Monson

How We Told Spencer

Most moments in time pass us by with little or no thought given to their passage.  We go forward crossing items off our to-do lists and wonder where the time went.    It's not that we try to make time slip by quickly, more than we are just busy living life.  At least for me, most of the time I have to remind myself to pause and savor life's moments as they come. 

Then there are those moments in time which are forever emblazoned into our memories.   For better or worse, they are there in our brains never to be forgotten.    Getting a scholarship to BYU, getting proposed to, marrying my sweetheart, having babies, buying our first house....these are the moments we're happy to remember.  Then there are those horrible moments we wish we could forget.  Up until  a month ago, those horrible moments for us have been of the shared kind, like the day in college where we gathered in the Marriott Center and a man claiming to have a bomb terrorized Howard W. Hunter and all 20,000 of us that were there that day.  And the events of September 11th traumatized millions of Americans, including us.

Then there's our January 2012 and suddenly we had our very own moments emblazoned with infamy into our memories.  I'm not really sure if anyone else cares about about these in-depth recountings, but they're healing for me to write, so I hope you'll forgive my indulgence in retelling it in detail. 

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

When the pediatrician called us on that Tuesday afternoon, I had just finished making dinner, the younger kids were playing, Glen was at work, and Spencer was hanging out with a friend.  I took the call in our bedroom where the hubbub of after-school life would not interrupt me as we talked.   I remember the doctor saying that the blood test results had arrived and that there were some abnormalities.  She bantered on about she'd spent all afternoon on the phone discussing Spencer's case with other doctors.  I probably should have been alarmed at that point, but I still just assumed she  was going to tell me it was a minor abnormality (like mono or anemia or something) and that she was discussing with other doctors what tests to perform next.   After a minute or so of the conversation though, she asked me if I was sitting down.   That was the moment when my heart sank in a realization that this wasn't going to be a minor thing she told me.  I started crying before she even said the words. 

Our kids had been Dr. B's patients for over a decade, but it wasn't until that moment when I realized the depth of the compassion she had for her patients.  Although I'm sure she would've preferred to end the uncomfortable conversation as quickly as possible after sharing the news, instead she sat there and consoled me, a sobbing mother that had just learned her family's lives had been unalterably changed.  I've heard enough stories of doctors who insensitively share bad news or who pawn the job onto others, to understand that her compassion was a gift to me that day.

When the conversation ended,  I sat there, phone still in hand, shell shocked and my first coherent thought was that I needed Glen by my side.  I knew he was having a busy day at work, so I sent him a quick text, "Bad news.  Come home."  When he did not answer,  I gathered my wits and called him, after which he came home as quickly as the Metro schedule would allow him.   In the meantime the kids, especially Cami, were starting to grow alarmed at my obvious distress.  Feeling rather alone at that point and not knowing how to comfort them without telling them something, I decided to go ahead and tell them that Spencer was sick and that we would be taking him to the hospital that night. 

By the time Glen got home, I was restless and nervous, but much less emotional.   We immediately discussed practical concerns, like calling my sister AnnaLisa to come over to watch the kids and who, if anyone else, we should call that night.  It didn't take long, though,  before the topic turned to how on earth we should tell Spencer about it.  He still wasn't home and we debated whether to call him or not.  In the end we decided to let him enjoy what we recognized would be his last moments of normalcy, and let him come home on his own.  It was probably about 30-minutes after Glen's arrival that Spencer came in the door.  He came home in a great mood--light-hearted and joking around--which honestly made it seem like an even harder task than it already was. 

We'd instructed the kids to keep their distance, so we could tell him in our own way.    And for a few minutes we sort of shadowed him as he wandered around the house, hoping for a good inroad for bringing it up.  Finally he asked if the doctor had called about his blood tests yet.   We took this as our cue and summoned him to our room for a talk. 

On the way to our room he jokingly asked, "What? Do I have cancer or something?"

It was one of the saddest moments of our lives, when we had to answer that question affirmatively.   He sat shell shocked for a bit, but mostly had all sorts of practical questions...what about school?  what about playing sports?  what about going on a mission?  what about scuba diving in Florida with his scout troop this summer?    We had to honestly say at that point that we had no idea about any of it.  All we knew is that he needed to go to the hospital that night and that we'd all be figuring those kinds of details out as we went along. 

Looking back, I now think that in a weird sort of way he was actually relieved by the diagnosis.  Not feeling well enough to play sports, especially as pre-season lacrosse training had just begun, was really starting to discourage him.  I truly believe that having an extremely legitimate explanation for his physical weakness, ironically made him feel less weak.   

At the end of that first conversation, he took a deep breath without looking back and has been walking forward with courage and faith ever since.    

We love you Spencer! 


*********************************
"The courageous faith and action of one person who excels in coping with adversity can be a great blessing to others who are strengthened by the example."

Dallin H. Oaks

Home

I tried to write a meaningful post tonight, but I just have to admit that I simply don't have the brainpower to do it, so I'm going to sleep.  In my own bed.  Next to my husband.  With my kids in neighboring rooms.  There will be no hall lights left on.  No IV pumps will beep at us.  And nurses will not wander in and out of our room.  Life is good. 

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

Update

We took Spencer in for a blood draw this morning and his counts weren't high enough for the bone marrow biopsy and spinal tap which were scheduled for this afternoon (ANC=230).  That meant we got to spend a bonus day at home instead of waiting, waiting, waiting in the hospital! 

The doctor just called and said she would reschedule his biopsy and tap for Monday or Tuesday and then readmit him to the hospital at the same time, so he can get started on his second round of chemo.  We're grateful for the weekend together, but sad that it already seems like way too short a time at home. 

Spencer is trying to eat up every moment of normalcy he can while he's at home.  He's been able to hang with friends, eat lots of home cooked food (now that his throat is better), and wander aimlessly through the house happy to be unhooked from his IV tower.    He even ventured to an uncrowded store tonight (with a mask of course). 

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

"A home is much more than a house built of lumber, brick, or stone. A home is made of love, sacrifice, and respect. We are responsible for the homes we build.... There will be calm and wind, sunlight and shadows, joy and sorrow. But if we really try, our home can be a bit of heaven here on earth." 

~Thomas S. Monson

Four Week Surprise!

Four weeks ago today, we walked into the hospital for the first time as newbies in the world of cancer.  Now, for better or worse, the pediatric hem/onc ward  has become like a second home to us.  

So homey that today I  even got to play nurse and don a mask and gloves while I learned the ins and outs of taking care of Spencer's central line at home.  I practiced flushing it with saline and heparin and learned the super sterile techniques of changing the dressing. 

The nurse watched my every move and let me practice on this dummy before trying it on poor Spencer who was giving me pointers while I did it. 

After that we packed up Spence's stuff...

and took it wagon load by wagon load out to the car....

Then a little going away party showed up to ooh and ah over his pink discharge ticket...

then they escorted him to the front doors of the hospital where the girls took the liberty of naming his monkey, "Rasneyily"...a catchy combination of their names...Jill, Sydney, Carly, and Rachel . 

It was a day or two earlier than we expected, so we weren't quite as prepared as we would have preferred....

but after a last minute shopping trip and a sign making/scrubbing/laundry session, we are so very happy to be home again.

All together under one roof.  Sleeping in our own beds.  Eating meals together.  

I don't think coming home has ever felt so sweet. 

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

Now that we are home...

you won't find us at the hospital anymore (just in case you planned on visiting). 

We have a home care company who brought us all the supplies we will need to flush his lines daily and change the dressing weekly.

he has an appointment to get his blood checked on Thursday, then if all looks good, he will get a bone marrow biopsy/spinal tap after that.    They told us to plan on it taking most of the day. 

The home bound education finally got set up and Spencer's home bound teacher arrives tomorrow for their first session. 

I will likely not be blogging every day while we are all at home.  I like to blog too much not to post at all, but I'm going to focus on soaking up every second I can of being all together as a family for this week. 

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

"Think not that uninterrupted joy is good. The sunshine lies upon the mountain top all day, and lingers there latest and longest at eventide. Yet the valley is green and fertile while the peak is barren and unfruitful. Life that is all sunshine without shade, all happiness without sorrow, all pleasure without pain, were not life at all, at least not human life. Take the life of the happiest. It is a tangled yarn. It is made up of joys and sorrows, and the joys are all the sweeter because of the sorrows."

Reed Smoot

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

Bone Marrow News!!!!

We've got two perfect matches, which means Spencer's getting a bone marrow transplant!!!!!

While the girls were all psyched up that they might be the matches, we were quite surprised when the doctor told us tonight that it is actually Cami and Adam who are the perfect matches.  According to what they originally told us, Adam wasn't even a low-resolution match. 

We don't know if they misspoke the first time, but the doctor went back and double checked the paperwork when I expressed my surprise and it was confirmed that Cami and Adam are the two official matches.  We'll be meeting with the transplant team in the next few days and they will help determine which one of them will end up being the donor. 

Since Spencer has the perfect in-family matches, rounds 2 and 3 of chemo will proceed here at Inova Fairfax Hospital, but after round 3 he will be transported to a transplant hospital (probably National Children's Medical Center in DC) and will receive round 4 there, which will include the transplant.    We hear that bone marrow transplants are rather horrible to go through, but since they offer the best chance for a long-term cure, this is all very, very good news! 

Time Still Flies...

I've always heard that time seems to stand still when you're in a crisis situation, but after almost a month in our own crisis,  I believe that that statement is only partially true.  Although nearly four weeks have passed since Spencer's diagnosis, I still find myself reliving some of those early moments (like hearing my pediatrician say the word, "leukemia" for the first time) over and over again.  It's not that I'm dwelling on the past, more than I still feel like I'm trying to wrap my brain around it all.  

For the most part though, other than those quiet reflective moments, I've discovered that time still flies!  The days blur together and I can hardly believe that we hit our month mark later this week.  Here are some of the things (in addition to taking care of Spencer) that are keeping us busy: 

Temples and Tombs:  Third Grade Musical--Glen attended this very cute performance of the third grade musical at the elementary school.  I had helped Adam put together his costume for it, but never actually got to see him wearing it, so I was grateful for a friend who thought to take a couple pictures of him, since I always have the camera with me (whether I be at home or the hospital). 

Can you name that costume? 

He's an Egyptian rapper of course! 

District Indoor Track Meet--As a fellow runner, I was so excited when Cami decided to join her high school cross country and indoor track teams this year.  It's her first year of running  (other than a year of Girls on the Run in elementary school), and I'm so proud of how hard she's worked through the season.  It seems that almost every race is a PR for her and I look forward to watching her continue to improve in future seasons.  

This was another event that happened on my night at the hospital, so Glen was there to cheer her on.  Thank you again to friends who took pictures for us. 

Pinewood Derby--I have a confession to make and I hope you don't think less of me for it....

For as much as Adam loves everything about making his own car and racing it against his friends in his scout troop's Pinewood Derby, I find everything to do with Pinewood Derbies to be insufferably painful.  Not only are the actual races somewhat anticlimatic in that it takes 2+ hours of sitting, while each car races for a total of 10.2 seconds over 4 or so races.  But I find the actual process of making the cars about as tortuous as cleaning my fridge and for anyone who's seen the inside of my fridges, knows that that's really saying something.  So although Spencer's diagnosis came a mere two weeks before the Pinewood Derby, we honestly hadn't even given making his car a second thought at that point. 

Thank goodness for awesome friends!  I'm fairly confident that without the help of Garrett and his dad, Scott, that there's no way Adam would have been able to participate this year.  They had him over for several hours over the course of two Saturdays and helped him to create this fine looking masterpiece (probably much finer than if we'd been leading the charge).   It finished very respectably in all the races and Adam was thrilled!  This was the only one of these events that I actually attended and I can say without a doubt that it was the least stressful Pinewood Derby I'd ever been to!  Thank you to the Woodhouse family!     

 

Winter Beginning Band Concert--This is Emma's first year of playing in the school band and I won't lie and say that I was not disappointed when she followed in her big brother, Spencer's footsteps by choosing the clarinet as her instrument of choice.  Not only do I love the music of the clarinet, but it also meant we didn't have to rent or buy a new instrument. 

By pure fluke of the calendar, once again this event fell on a night when Glen was home with the kids and once again I am grateful for a nice friend who snapped these shots for me.  I guess people know me well enough, to see if I'm not there that I'll always be grateful for a picture.  Someday I hope to think about our calendar well enough in advance to actually leave the camera at home for this kind of event, but then again, that would require brainpower and forethought, two things that happen to be in pretty short supply right now!

Now if I could just figure out how to fit a few more of these into our schedule....

Ellie snuggles make everything seem a little better!

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

Today's Update:

Same old, same old.  Waiting for his blood counts to go up, so we can take him home.    He's still feeling pretty good comparatively speaking.  He's still on a gazillion medications.  He's still waiting for the county to send over some school work.  We're going to start some home study seminary pretty soon.  Watched the Super Bowl with Glen tonight.  They're both happy with the outcome!

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

“God expects you to have enough faith and determination and enough trust in Him to keep moving, keep living, keep rejoicing. In fact, He expects you not simply to face the future (that sounds pretty grim and stoic); He expects you to embrace and shape the future--to love it and rejoice in it and delight in your opportunities." 

Jeffrey R. Holland