Tuesday, July 31, 2012

Keeping Things Interesting

Spencer went into the clinic this afternoon for his monthly routine check-up and infusion of preventative antibiotics (Pentamidine).   They weighed him (64.7 kg.), measured him (still 5'9"), and then took him back to the blood draw room to insert his IV.   

That's where the routine appointment lost a little of the routineness.  They had sent me to the exam room to wait for him while they were inserting it, where I expected it would take 5 minutes or so.  Twenty minutes later, after starting to get a little nervous,  a nurse ran and got me to let me know that Spence had had a bad reaction to getting the IV.   I walked into the blood draw room and found him with his head between his knees,  pale as a ghost, and covered in a cold drenching sweat.   No one knows exactly why he reacted that way, but after they forced him to eat, drink, and rest he seemed okay when he walked back to the exam room. 

Eventually we got to the appointment where our pediatric oncologist (Dr. Shankar) examined him and let us know that his bloodwork was almost totally back to normal (WBC:  3.35,  HGB:  15.9, ANC:  1520, Platelets:  138).    Only his platelets were low by a miniscule amount. 

She then sent us back to the infusion room where he could receive his hour-long IV infusion of antibiotics, after which we could go home.   He had totally recovered from the IV insertion and  was just biding his time listening to music, glaring at his mom,  and using his iPad.   It was all routine again....
...until his arm started breaking out into hives and the flushed face and cold sweat returned.   The doctor came quickly and prescribed him some Benadryl to be administered through his IV.    Thankfully the Benadryl did the trick and hives never spread past that one arm.  Although it seemed like an allergic reaction, the doctors believe that he'll actually be fine with future doses as long as Benadryl is given preemptively before the antibiotic is administered.  Since he's already allergic to penicillin and sulfa antibiotics, we're grateful that we don't have to cross yet another one off the list. 

It was a long, stressful afternoon (more than 3-1/2 hours beginning to end), but since it  was accompanied with the news of another month of clean blood work, we are definitely not complaining! 

Saturday, July 28, 2012

On a Summer's Morning

One summer morning, a little girl put on her favorite hat and went on a walk with her Daddy.  Hand-in-hand they walked on the gravelly trail through the woods, talking and laughing as they went. 

They didn't walk very far or very fast, because the little girl kept finding exciting things to capture her attention.     There were sticks and rocks to be found.  Goldfish to be spotted in the meandering creek. And pretty butterflies flitting by.  With the pointy end of the stick she found, she scratched love notes to her Daddy in the gravel. 

A little while later, Daddy found a toad that was so cute and so tiny, that the little girl wanted to see it up close.  So Daddy caught it and gently placed it in her hands where she could get a better look. 

After carefully putting the toad back into the woods and out of the path of the walkers who would come after them, the little girl challenged her Daddy to a running race.  They ran fast and it was a close race. 

But the little girl won....of course.  
And then Daddy and the little girl went skipping happily down the trail. 



Thursday, July 26, 2012

The Wild Side of Virginia

After dropping Spence, Cam, and friends off at EFY on Monday, Ellie and I were faced with a decision.  Turn right back around and go straight home.  Or find something fun to do before embarking on the nearly 3-hour drive.

And it didn't take too much persuasion on Ellie's part, for us to opt for a little fun first.... 

by going on our very first  drive through safari (this picture is of the car in front of us)....

where we got up close and personal with the animals....

We petted their soft fur....

fed them buckets of food...

or in some cases, the whole bucket...

we rolled up the window when certain scarier animals came near (anything big that had horns or antlers)....


We laughed at how they begged for food....


Or just seemed a little curious...

We got excited when our favorite animals came....

and commented to each other how cute some of them were...

 especially the babies...

We did a fair amount of screaming (like when the ostrich, instead of going after the food, started pecking at the car and then my hand, startling me into throwing the entire bucket over my shoulder, scattering little pellets of grain all over our freshly vacuumed car)....

but mostly it was a whole lot of giggling (from the young and the old in the car)...

We made the loop twice, laughing the whole way, and Ellie proclaimed it her best Mommy-daughter date ever....

And I couldn't have agreed more.  :)




Wednesday, July 25, 2012

Normal Summer = Busy

When doctors told us that medically speaking Spencer was in a gray zone and left the decision to us about whether to proceed with a bone marrow transplant, we felt the weight of the world on our shoulders.  Deciding where to go on vacation is hard enough for us and making a  life-and-death decision about our son seemed a little overwhelming to say the least.  We prayed, fasted (along with our ward and family), and researched our hearts out while we struggled with the decision and found strong pros and cons with either choice.  Eventually, we felt peace and knew that we should not proceed with the transplant.  

Once we made the decision, we quickly noticed a big perk to finishing his treatment after the 4th round of chemo instead of spending months and months in isolation recovering from a transplant.... Spence would be able to experience a normal summer--his last summer of being a high school student. 

And, boy, after spending 5-months cooped up in the hospital, has he been making up for lost time!  I had forgotten how extremely busy a normal summer is for teenagers!   

He's spent 10-days in Florida, countless hours with friends around town, and 4-days at Youth Conference.  Then a mere 36-hours after arriving home from the youth conference in Palmyra* (the youth conference* that Glen and I had originally been in charge of planning before Spencer got sick).... 

Spencer and Cami packed their bags again, to head down for a week at EFY* (Especially for Youth) at  Southern Virginia University.
Since SVU is a good 180-miles from our house, we worked out some carpooling so that no one would have to drive both ways (unless you're like me last year when I drove there and back twice in one day).   I thought it would be fun to meet their roommates and help them get settled in, so I volunteered to drive them there on Monday morning.   The driving was clear sailing and they passed the time by watching "Tangled" with Ellie, who had come along to keep me company on the way home.
By the time we got there, Ellie was best friends with all the girls and would've gladly stayed there at EFY with them if I'd let her. 
After meeting their roommates and making sure that Spener actually put the sheets on his bed, Ellie and I bid our farewells for the week and set off on our own wild adventure.

To be continued....

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


A little note about some of my "Mormon talk" that may not be understandable to my non-LDS readers:

*Palmyra, NY is located in the Finger Lake region of upstate New York and is the location of many early church historical sites, including the Sacred Grove where Joseph Smith knelt and prayed after asking God which church he should  join and the hill where the Book of Mormon had been buried.  Each July a grand play is held there in Palmyra, where over 700 performers reenact scenes from Book of Mormon.    

* The Book of Mormon is another testament of Jesus Christ and tells of Christ's visit to the American continent to teach the people there what He'd taught His followers in Jerusalem.  It is an amazing book that has changed my life. 

* Youth conference is an annual gathering of the youth in our immediate area (about 200 youth), where they have spiritually uplifting experiences, perform service, and have fun with a wider range of LDS youth than they would normally come into contact with.   (click here  to see last year's report on youth conference)

EFY is a camp held at a university in Southern Virginia, where people come from all over the Eastern United States to participate in similar activities as they did at Youth Conference, but on a grander scale.  They went last year and loved it! 

Saturday, July 21, 2012

The Bright Side


They say that I will miss these days someday. 

But days like the last few make it hard to imagine that that will ever be the case.   I've been wearing the same sweats for two days.  My emails and voice mails are left unanswered.  I missed a girls' night out.   It's not that the last few days have been bad, but with Glen out of town and a big house project looming before me, I often find myself longing for simpler days. 

Between being neck deep in this house project (attempting to organize 3 kids' stuff in a not very big bedroom) and the horrifying news of the day in Colorado (where Glen grew up), I needed a little sanity check tonight.   I decided to put aside the piles of stuff to remember all the wonderful blessings in my life. 

The things that I will miss someday.   

  Like Adam's silly conversations that usually revolve around large math problems and rocketing to the moon.  Also his helpfulness.  He was my right hand man putting together some IKEA furniture today. 

I am so grateful, over the last several months, to have been able to witness Spencer's courage and good cheer in the midst of great challenges...

I love to watch Cami's efforts to stay connected with her siblings.  Reading Harry Potter to Adam, letting Emma help with her cupcake business, helping Ellie with her crafts, and staying up way too late with Spencer even though she will be waking up 3 hours before him. 

I love my parents and siblings, all of whom who are patient and nonjudgmental of my many weaknesses...

I am in awe Emma's unselfishness and strong drive to make things happen (including earning over $350 for childhood cancer research and starting her own blog)....

And how can I forget Ellie's sense of fashion, which has been bringing a smile to my face ever since she learned to dress herself? 

And I am thankful every moment of the day for my hunny who loves me through thick and thin, which is good since I am a little on the thick side right now....

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

"...if we spend our days waiting for fabulous roses, we could miss the beauty and wonder of the tiny forget-me-nots that are all around us.  This is not to say that we should abandon hope or temper our goals. Never stop striving for the best that is within you. Never stop hoping for all of the righteous desires of your heart. But don’t close your eyes and hearts to the simple and elegant beauties of each day’s ordinary moments that make up a rich, well-lived life."   Dieter F. Uchtdorf


Wednesday, July 18, 2012

A Day at the Beach

The day got off to a stormy start.

In addition to being a little grumpy about realizing how ill prepared we were for our little daytrip to the Delaware shore, we also endured about 45-minutes of almost constant thunder booming and torrential rain that slowed the traffic to a hazard-flashing crawl.  We were very close to turning around.  But after a couple of phone calls reassuring us that the sun was still shining at the beach, we bravely persevered through the windshield wiper frenzy and heeded the call of the sea. 

It was just before 11:00am when we arrived into Bethany, Delaware, but since  no one had thought to pack any food, we decided that we were best off starting the day with a pitstop for lunch and snacks.   After filling our hungry bellies we headed to Delaware Seashore State Park where we met my brother Matt and his family, Emma,  and my sister Heather who had camped there the night before. 

As soon as the kids set their feet in the waters of the Atlantic Ocean, all of their previous woes seem to fade away immediately.    Ellie literally could not stop giggling and ran pellmell excited between the foam from the leftover waves...

to the safety of Daddy's arms...

and then to the sand where she built sand castles and made herself into a sandy mermaid...

Adam was a little more serious in his play and spent most of his time digging for seashells and other creatures...


and learning to boogie board...


Emma became quite adept at boogie boarding and like Ellie, spent a good portion of the day laughing and smiling in pure delight at being at the beach!  

Cami spent her time looking cute...

and boogie boarding with daddy!

Our nephew, Lincoln, had camped there at the beach with his family the night before and needed a little snooze after playing in the surf and sand all day...



I got in the water eventually too, but mostly spent the day keeping an eye on the kids and going around taking pictures (and annoying certain people in the process).

Spencer brought his friend, Ryan, with him and they worked on sweet boogie boarding tricks,

playing Frisbee, getting annoyed at Mom, and looking cool...

Spencer is very pleased to have lost his "cooped-up-in-the-hospital-for-months-on-end" anemic pallor and have some color back to his skin, as well as a good head of hair growing back in. 


All in all, it turned out to be a fabulously perfect day to spend at the beach.  There was hot weather and plenty of sunshine, but without the huge crowds.  It turned out to be the perfect kind of day for recouping and for getting amped up for another busy week getting Spencer, Cam, and Glen off to Youth Conference in Palmyra tomorrow.   

I will miss my big kids this week, but can I just tell you all again how totally happy we are that Spencer is healthy and well enough to enjoy this fun and busy summer?! 


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