Music Therapy

Caveat Lector (Reader Beware) - This post is being authored by Lara's husband, Glen.  Since Lara started this blog on April 14, 2007, she has encouraged me many times to be a guest poster.  Now nearly 5 years later, I am making my debut.  I completely understand if you read no further!!!

I love Lara's blog.  It makes laugh, it makes me cry, but mostly, it chronicles our life together and I treasure the blessing it is to read over past posts and reflect on our experiences.  I hope my "butting in" will not detract from the good she does through her creativity and insight she puts into every post she makes.

So for my maiden post, I wanted to talk about the influence of music in the lives of the Goolds.  Music has always played a huge part in my life.  I attribute my love of music to my mother, Sandy.  Mom is a beautiful singer.  She encouraged me and all of my siblings to learn the beauty of music at a young age.  She battled five boys and one girl through piano lessons hoping to instill her love of music to us.  I still tinker on the piano, but my love of music started at that very young age and still influences me deeply.

One of the ways mom helped us cultivate a passion for music was to give us the opportunity to experience the theater.  I remember being very young when mom and dad treated our family to a live performance of "Annie" in Denver.  Certainly hearing a live performance of "Tomorrow" was captivating enough, but I was then, and still am today, taken with the song "Maybe".  My love of music quickly extended to a love of the theater.  We would often have the opportunity to catch a show at the Playmill in West Yellowstone where seeing the likes of Fiddler on the Roof, Joseph and His Amazing Technicolor Dreamcoat, Seven Brides for Seven Brothers, etc.  So it was that my passion for theater and music in general was born.

One of the ancillary blessings from my two year church mission to London was the opportunity to see some of the best theater in the world on the West End.  In particular, every year for our mission's "Christmas present" the mission president would hire out the entire balcony of the Palace Theatre and all 200+ of us missionaries would pile in to be treated to a performance of Les Miserables.  It was an unforgettable experience that touched our souls in a meaningful way and  I will forever be endeared  to the touching story of Jean val Jean.    Since then I have been fortunate enough to share Les Miserables with my wife and children, who I'm happy to say have fallen right in step with a love for music and the theater and for Les Mis in particular.    

So in the recent weeks, whenever I am feeling down and need a boost, one of the things I turn to is my music.  Music has always served as a sort of  "security blanket" to me, but in all that the last several weeks have brought us, music has been nothing short of therapeutic for my soul   A couple of days ago, I was having a long, lonely night in a stream of lonely nights lately, and I turned on the 25th Anniversary performance of Les Miserables and found some solace in the music as well as in the memories!

Jean val Jean singing, "Bring Him Home" has always been the highlight of the show for me and that song in particular has held many contexts for me through the years.   Its meaning sinks deep in my heart, instills memories, and conjures emotions of the best things.  My mom sang it for my mission farewell (with a few artistic license edits) as she and my dad sent me off on my mission all those years ago.  Then, the memories of sitting with my fellow missionaries on the balcony of the theater listening to "Bring Him Home" will forever be etched in my heart.

 So it is that I wanted to add yet another context in the annals of my fond memories of the emotions the song "Bring Him Home" has blessed me with over the years.  With this post, I offer this prayer for my son, Spencer:   

We truly can't wait to bring him home. 

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UPDATE (from Lara): 

• Spence is completely exhausted.    He slept almost 12 hours overnight, then took several naps through the day.  We turned away his tutor, kept the visitors away, and let the poor kid sleep.  His blood counts are low, but not exceptionally low, so I guess it's just his body just fighting extra hard right now. 

• Pain wise he's doing much better since his surgery.  Today was the first day that he didn't grimace every time he moved, so they weaned him completely from the morphine. 

• As the nurses come in for their shifts and find out about Spencer's appendicitis, they are all shocked.  None of them had ever heard of a cancer patient being afflicted with appendicitis during treatment. 

• PLEASE call before coming to visit.  Between his grumpiness,  fatigue and the low blood counts, it's just a good idea to check with us first before coming and if you do come, PLEASE plan on making it a shorter visit.  We are not discouraging people from coming,  but because we want visiting Spence to be as pleasant for everyone as possible, it's just a good idea to check with us first.  703-776-4513    Thank you for being understanding!

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"For my soul delighteth in the song of the heart; yea, the song of the righteous is a prayer unto me, and it shall be answered with a blessing upon their heads."
- Doctrine and Covenants 25:12

Living on the Wild Side

 Although I'm normally someone who likes to plan things in advance,  I've always loved the thrill of waking up with a fun idea for something to do, then making it happen with little to no pre-planning.   I guess you could call it my wild side.  Of course having a child in the hospital for weeks on end does not lend itself very well to either spontaneity, living wild,  or even day trips in general. 

  So it was fun to wake up on President's Day and realize that the kids were off school, the weather was gorgeous, and I was at home!  It was too perfect not to go out for a spontaneous fun day on the town.   

A couple hours later we were at the National Zoo with Ellie, Adam, Emma,  my 2 sisters and our friends, the Tapps.    It turned out to be four adults and five kids...a very nice adult to kid ratio. 

After polling the crew, it was determined that the main objectives of the day were to see the elephants, the pandas, and the bird house (and everything in between)....

We weren't in a hurry,  so we decided to go at the kids' pace, which at times was painfully slow.

In the end the slow pace turned out to be refreshing and I found it fun to explore the zoo on a chilly day (relatively speaking), because the animals were actually awake and active, a far cry from the lazy animals we see in the summertime...

Eventually we did find the elephants...

and the birds...

but the panda bears were hiding, so this statue became the next best thing....

And this is a little off topic from zoo animals, but since I have this picture with Sue and I from the zoo that day, I just have to add in how wonderful it is to have a friend like Sue.  Little did the Tapps know when they moved around the corner from us several months ago, what high maintenance neighbors we were going to be, but man, I have to say that it is a HUGE blessing having them live so close.  In addition to accompanying us on spontaneous trips to the zoo, Sue saves our hides at least weekly, gives our kids rides, picks up things at the store for us, as well as helping me maintain my sanity by going on long walks a couple times a week (or whenever we can) with me. 

And at the end of the day, Spence actually expressed a little disappointment about not being able to come with us to the zoo.  I guess that means he's been in the hospital for a long time, because he's been avoiding our zoo trips for years now.  :)

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UPDATE:

•  Last round of chemo he was receiving  twice-weekly spinal taps, so in order to make sure his blood was strong enough for the procedures they transfused him with platelets whenever his counts got to 30.  He's not getting the frequent spinal taps anymore, so yesterday his platelet counts were the lowest they had ever been before (10).   Normal platelet levels are over 140. 

• Platelets are instrumental in helping the blood to clot.  With his very low counts, his mouth was bleeding a lot (without any pain) yesterday and he had the petechiae rash in several places.  (Petechiae is a reddish, painless pinpoint rash that is caused by burst capillaries due to low platelets and is ofttimes a symptom of leukemia that brings people to the doctor in the first place).  

• With the low counts and the symptoms, they did transfuse him with platelets yesterday, which thankfully has helped with the random bleeding. 

• Like with the platelets, because he's not having the frequent spinal taps that required his blood to be kept at a higher level, his blood counts are lower than they've ever been.   Basically that means that he's tired, pale, and grumpy as can be.  I apologize in his behalf if you've visited the last couple of days and found him less than sociable. 

• His entire body is uncomfortably itchy right now.  Apparently it's a common side effect of morphine, which he has been taking for his post-appendectomy pain.  Thankfully they are in process of weaning him from it now and we are hopeful that the itchiness goes away with the morphine.   

• Despite all of that, Spencer actually is feeling better after his surgery.  His pain is lessened, he's moving around more, and if it weren't for the low blood counts and itchiness he'd probably be doing just fine. 
  
  His ANC is about 50 today, which means he's almost bottomed out and if you're sick in the slightest you should stay away. 

• I've started calling around to bone marrow transplant centers to see if we could schedule a visit for a tour and visit with the doctors.  Most people in our area end up at National Children's Medical Center in DC (30-45 minutes away), Johns Hopkins Children's Center in Baltimore (a little over an hour away), Children's Hospital of Philadelphia (a little over 2 hours away), or Duke University Hospital (3-4 hours away).   We're still leaning towards the National Children's Medical Center, just for proximity's sake and making it easier for our family, but we feel like we need to explore all of our options before making a final decision. 

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"Stresses in our lives come regardless of our circumstances. We must deal with them the best we can. But we should not let them get in the way of what is most important-and what is most important almost always involves the people around us. Often we assume that they must know how much we love them. But we should never assume; we should let them know. Wrote William Shakespeare, "They do not love that do not show their love."  We will never regret the kind words spoken or the affection shown. Rather, our regrets will come if such things are omitted from our relationships with those who mean the most to us."

--Thomas S. Monson

 

Homeschooling FAQ's

Over the last few years, I've had a lot of people ask me about our decision to homeschool our children for 8th grade.  It's a rather drastic choice and while most people have been supportive, it's also somewhat controversial.   Of course we did not endeavor into such a decision without a lot of research and prayer and over the course of the last few years we have felt very inspired that it is the right thing for our family.  Recently a friend of mine asked me some specific questions to help her as she decides whether to homeschool her own daughter for 8th grade and since  other people have been asking as well, I thought I'd compile a list of the things that I've been asked most frequently:  

 
Why 8th grade?
For a number of reasons, we felt like if we were only going to homeschool the kids for one year, then the eighth grade year was ideal.  My first main reason for this decision is that for the most part the year is off their high school record, so that I don't have to explain the holes in their transcript (see exception below) when they're applying to college.   Secondly, we felt like it was their one last year before heading off to the crazy world of high school, and we wanted to give them every opportunity to strengthen themselves within the walls of our home before then.  Lastly, both Spence and Cami had gone to their seventh grade year at middle school before homeschooling for 8th grade, and frankly for various reasons both of them were very excited to have a year "out of the system".   While neither one of them had had bad experiences, neither one of them were such fans of the middle school garbage that goes on either.  And that brings me to my last big reason...middle school is kind of  a yucky, transitional time in many kids' lives and once again, we felt that a year of a positive strengthening experiences in our home was infinitely better than the negative environment of a middle school. 

 Many people we've met in our homeschooling ventures, homeschool for all of middle school.   With our younger kids at home, we didn't feel like that was the right thing for our family, but now that my baby is in school, I may consider that for the future (if the younger kids are game for it). 

Doesn't the middle school need their positive influence?
Of course it does, BUT not at the detriment of tearing my kids down along with them.  Once again, we absolutely felt strongly that bringing them home for a year was  exactly the preparation they needed to be the best positive influences possible going forward into their high school years and beyond. 

My child doesn't want to homeschool, but I think it would be best.
I personally do not feel like it would be a very successful experience if your child is resistant to being homeschooled, even for just one year.  My advice is to suggest homeschooling as a possibility for a year or two in advance of when you're considering it, then take opportunities to regularly point out the fun advantages that homeschooling will offer them (field trips, no late night homework, etc). 

In addition, to increase their excitement level of staying home for a year, we also promised our kids a fun trip sometime during the year....a special trip that they wouldn't be able to do if they were in school.   Spencer went on a trip with my parents to the the Pacific Northwest through Seattle and into Canada.  Cami is heading to Denver in a couple of weeks with Glen...to visit his family and hopefully to catch  BYU in the basketball playoffs there.  

If despite your advance preparation and promise of something exciting, they are still resistant, then I would strongly advise you to reconsider your thought to homeschool.  Having a sullen, unhappy teenager at home for a year could be a very trying experience for both of you that may sabotage your efforts in strengthening them for the future.  If, however, you absolutely feel that it is the right thing to do despite their resistance, then I would plan on a month or two of decompressing and working on your relationship. 

I'm too busy, I'm not sure I can make it work.
I figure everything that keeps me busy...my church callings, PTA responsibilities, Ellie's health issues, etc....would be consuming my day regardless of whether I was homeschooling or not.  But if Cami were at school, my time with her would be short and rushed.   With her at home, in addition to her academic studies, she also gets some Real Life 101. 

My advice is to take a deep breath and be prepared to prioritize.  First off, while some people may argue with me, I do not feel like homeschooling should be designed to be just like a school day where they are trying to cram six subjects in a day, while you stressfully try to keep up with everything they're doing.  I firmly believe that one of the beauties of homeschooling is flexibility.  Math is something that needs to be done every day, or it can easily get away from you, but in my opinion, there is room for much flexibility in all the other subjects. 

When you think of all the down-time in a day of school...going from class to class, the teacher disciplining other students, taking attendance, the teacher answering questions that your child already understands...the actual amount of time spent learning is not that impressive.  I feel like Cami spending an hour-and-a-half doing her online, interactive science class geared to her specifically is every bit as effective (or more so) than 2-3 hour-and-a-half blocks of science per week at school. 

What about curriculum? 
There are a million things out there, but my strong suggestion is to not feel like you need to recreate the academic environment of school at home.  Take advantage of being at home and make it fun!  Math is math, but every other subject can be made exciting and interesting for both of you.  I won't go into great detail here (call or email if you have specific questions), but here are a few basic things to keep in mind. 

  1.  Homeschooling is not free or cheap, especially for teenagers.  You want them to have quality materials and exposure to uplifting ideals and you should expect it to be about as expensive as sending them to a cheap private school....but with a much more loving, committed teacher!  :)

  2.  I know I'm repeating myself now, but do NOT try to recreate school at home.  It will be too draining for both of you and will likely not be the fun, bonding year you're hoping to have.   Except for math, it is absolutely not necessary that they learn exactly what they would have had they been at school. 

  3.  Contact your high school and find out if there will be any potential conflicts with homeschooling for 8th grade.   Especially, discuss math, since many kids are taking high school level math by 8th grade.  Our high school needed to see Spence's Algebra work, in order for him to sign up for Algebra 2.  For this reason and because I was much more intimidated by teaching Geometry, we signed Cami up for a Geometry class at a local private homeschooling "school".  I liked that she was being taught by someone more knowledgeable than me and I appreciated that she would have a grade and plenty of proof (and proofs) to show the school.  

  4.  Network!  Before you even start homeschooling, find a local LDS homeschooling group, get on their email list, and start participating in their social activities.  As you go along, you will most likely discover amazing moms who teach classes to other homeschoolers.  My kids have participated in Shakespeare, Statesman, and cooking classes this way.  It's great for them socially, good for you to have someone to bounce ideas off of,  and also great for supplementing the curriculum. 

  5.  In order to ensure that their homeschooling day doesn't dissolve into time wasting, we make the hours that they would normally be at school (8-3) a time set aside for their development....without TV, computer, or sometimes even pleasure reading since I have a few bookworms.   It doesn't necessarily that that block of time is super structured the whole time, but I want them to understand that their time at home is meant for  their strengthening and development, not to have extra time to waste. 

What are some of the coolest parts about homeschooling?
This list could be a mile long, but here are a few of my favorites:

  Low stress.  No more staying up until the wee hours trying to get a project done.  With even a somewhat concerted effort, they can easily complete all their work in a couple of hours each day, leaving the rest of the day open for developing talents, friendships, reading, helping around the house, exercising, etc. 

  Developing talents:  This is one of my favorite parts about homeschooling...the opportunity to explore their talents like music, cooking, sewing, etc. in much greater depth than they could if they were bogged down with a full day of school and the ensuing homework. 

  Working on goals:  Along the same lines as the previous  one, when their school work is all done in the first few hours of the day, guess who has plenty of time to work on Personal Progress, merit badges for Scouts, and any other goals they have set for themselves?  No more excuses! 

  Specific training:  You really want to teach them about how to balance a checkbook or make and keep a budget or learn how to plan a well-rounded menu and haven't had time yet?  Homeschooling provides the perfect opportunity to sneak in teaching about all those practical skills you've been meaning to teach them, but struggle to find the time for during the school year. 

  Family relationships strengthened:  I love to see the special bond my 8th graders develop with their younger siblings during this time at home.  The bond is not only between them and any preschoolers that happen to be home with them, but because their lives are less stressful and jam packed than previously, they also have more to give to their other siblings as well.  It really has been a wonderful blessing to our whole family. 

In addition, there's also the bond between parent/child that invariably is strengthened as well.  Part of it's just the sheer quantity of time spent together, but it's also the special little things that we do together through the year...the Friday lunches out, the inside jokes, the shared dinner preparations, and the fun shared experiences. 

What are some of the disadvantages of homeschooling for a year?  
Probably the hardest part of it for me is the lifestyle change that it entails.  I was used to having preschoolers around all day, but it's totally different dynamics with a teenager in the house.  In many aspects it's easier than having a preschooler, because they can be left alone for a time, they're a little more self-motivated than a preschooler, and don't need to be entertained all day.  On the other hand, teenagers don't take naps or go on playdates and it sometimes can be draining to have them there all the time.  On the flip side, it could be just as challenging, if not more so, for the teenager who is suddenly at home all the time.  I suggest finding social groups and classes to get the involved in, for your sanity and theirs.  

What about sports?Our district does not offer middle school sports anyway, so this was not an issue for us.  We just had them participate in the community sports' leagues. 

What would you change?
Not much....maybe go on more field trips and be better organized. 

Any last words of wisdom? 
Be prayerful, be prepared,  be flexible, and have fun! 

Gratitude

In honor of Spence's 40th night in the hospital, I thought I'd spotlight some of the things I've been most grateful for lately:

...the moments, however short they are, that I get to spend with my sweetheart. 

...for kind and thoughtful friends who listen to me ramble, bring us delicious home cooked meals, shower us with kindness and generosity, and even mend Spencer's "special blankey" for him (Thanks, Cindy!). 

...for nurses who stop in to chat with Spencer, even though he's not assigned as their patient that day.  It always makes Spencer's day!

...for a Sunday afternoon walk with the kids down to the stream in our neighborhood.  Ellie was well-prepared with a blanket, basket, stuffed animal, and a hand colored soccer ball. 

...for another Sunday night at the hospital all together as a family.   We sang songs and had family home evening together--our lesson was on building our lives on a solid foundation.    We sang the, "Wise Man and the Foolish Man," song (complete with actions) and read and discussed this scripture:

"...remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall."  Helaman 5:12

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UPDATE:

Spencer's ANC is 229 today, which means he is neutropenic again.  That means no fast food and that he needs to wear a mask whenever he's out of the room.

He's still eating very little.

He reluctantly took the bandage off of his belly button incision today. 

I still fall asleep almost every time I sit down (including a head bobbing, drooling nap at stake conference today)...



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"...to express gratitude is gracious and honorable, to enact gratitude is generous and noble, but to live with gratitude ever in our hearts is to touch heaven." 
                                                                                                                 Thomas S.  Monson

Cancer Patient vs The Most Annoying Toy in the World

Meet Mr. Wonderful....

He's handsome, well-dressed, and says wonderful things that all women would love to hear!  (see this random video from youtube for a sampling of his wonderful phrases).

   Spence won it at a white elephant gift exchange a few years ago and after entertaining him and friends for a few days,  it got set aside in one the many piles of stuff in his bedroom.  

Fast forward a few years...Spence is hospital bound and someone, definitely not his mother, rediscovered it and thought it would be really funny to bring Mr. Wonderful to the hospital for entertainment purposes. 

Too bad having leukemia gave Spencer a serious grudge against Mr. Wonderful. Instead of laughing when the toy silkily asked if her mother could stay another week, he rolled his eyes in annoyance.  And later when it promised to share the remote and carry her bags for her while she shopped, Spence deemed it the "most annoying toy in the world" and determined that Mr. Wonderful must meet the same fate as his leukemia.  

So it was that  Spencer went about destroying Mr. Wonderful... 

He removed the voice box and snipped all the wires with scissors,  before he was finally satisfied that Mr. Wonderful was put into the silent stupor he deserved. 

But, in the end, silence wasn't enough and it wasn't long before Mr. Wonderful was laid in his final resting place....

Goodbye old friend.   The ladies will miss you.

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Now if you just can't resist getting your own  Mr. Wonderful to annoy the heck out of someone, you'll be pleased to know that they're still readily available to purchase on Amazon: 

But if you do decide to get one, you may want to be careful with it in Spencer's presence. 

Just saying...

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UPDATE:

• Because his blood counts are dropping quickly (ANC was 9000 on Thursday, 1550 on Friday, and 610 today), the doctors have Spencer on 6 different antibiotic/antifungal medications as a preventative measure from infection following his appendectomy. {diflucan, vancomycin, bactrim, flagyl, cefepime, gentamicin)  

• Because of all the different medications going around the clock, his IV pumps are beeping incessantly....at least once an hour through the day and night.  Nights have not been very restful here the last few nights. 

• Although his appetite is still minimal and moving around is still painful, he is definitely improved over yesterday. We'll take whatever baby steps we can!

• I got to watch the adult session of stake conference via webcast this evening.   Tomorrow I will take the kids and attend the general session, while Glen and Spencer watch it via webcast at the hospital.  It's amazing how connected modern technology can keep us. 
  
  

• Visitors are still more than welcome to visit Spencer, although we recommend calling first 703-776-4513 and being sensitive to how he's feeling.

• Long-time readers of this blog know that my humor tends to be a little on the goofy side, especially when I'm tired and/or stressed.  Since lately I've been a little of both, it's somewhat amazing I've kept my true colors mostly hidden until now.  :)

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“If we constantly focus only on the stones in our mortal path, we will almost surely miss the beautiful flower or cool stream provided by the loving Father who outlined our journey. Each day can bring more joy than sorrow when our mortal and spiritual eyes are open to God's goodness. "

                                                                                                                        ~ Jeffrey R. Holland

Plain Old Update

Update:

Spence is finding appendix-free life to be a little anti-climatic.  His abdomen is still in a lot of pain and he is still nauseous and weak from not having eaten much in two days. 

The doctors are having him blow into a spirometer several times an hour to keep his lungs fully inflated while he's laid out from the surgery.   It's meant to prevent pneumonia, but so far has also shown to be highly effective in giving him a bad case of hiccups. 

Spence is on a PCA  (Patient Controlled Analgesia) with morphine to help keep the pain in control.  The nurses have it programmed so that he can't get too much, but within that limit he can press it whenever he wants to. 

He'd still love to have visitors this weekend, but you'll want to keep your visits on the short side until he is feeling better. 

Cami made the FCHS lacrosse team!  Way to go Cami! 

Emma makes a mean peanut butter chocolate chip cookie  of which I've been daydreaming about all day. 

Today was dress-up day at the elementary school and Ellie was SO excited.  She had her outfit planned out for days in advance, then had a little meltdown this morning when she couldn't find her fancy shoes.  She still looked adorable, but  sadly the unusual meltdown threw me off my groove enough that I took no pictures.   

Between not getting enough sleep and  being extra worried about Spence the last few days, I've found myself somewhat more emotional than usual.  In addition to crying in worry and sadness at the pain that Spencer has had to endure, I've also cried in embarrassment, in frustration, in fatigue, and even while  watching someone sing the Star-Spangled Banner.  Thank goodness for a good supply of chocolate kept in close proximity! 

Adam's smile still lights up the grumpiest day! 

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"We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us. The old skin has to be shed before the new one can come. "

- Joseph Campbell

All You (N)ever Wanted to Know about Appendectomies

WARNING:  This Post was Written by an Extremely Sleep Deprived Woman and is Rated PG-13 for medical gore and mild potty humor.    (consider yourself warned)

According WebMD  the main symptoms of acute appendicitis are:

• You have pain in your belly. The pain may begin around your belly button.
• The pain in your belly gets stronger and moves below your belly button on your right side (the lower right quadrant). This is the most common place to feel pain when you have appendicitis.
• The pain does not go away and gets worse when you move, walk, or cough.
• You have pain in any part of your belly or on your side.
• You feel nauseated or throw up a few times. You also may not feel like eating.
• You have constipation, back pain, slight fever, or a swollen abdomen. 

Spencer had been having mild abdominal pain and nausea that came and went for the last few days, but it never seemed like anything  to worry about, because it never lasted more than a few minutes at a time.  Then, starting at about 1:30 this morning, Spencer had the nausea, slight fever, lack of appetite, and the severe stabbing pain in his lower right abdomen that got worse every time he moved even slightly.    The pain did not let up over time and he was given morphine to combat the pain. 

After it was apparent that the pain was not a  fleeting thing, the doctors decided to perform tests to determine the cause.  To diagnose, they always start with the cheapest, least harmful tests first.  Spencer started with an abdominal x-ray which was brought right to the room (this was about 3:00am), which showed nothing.    Next was an abdominal ultrasound which was done at about 6:00am in the ultrasound section of the hospital.  This test also showed nothing, because they couldn't even find his appendix during the test.  We were told that this is a common thing to happen with teenagers because of their anatomy, their appendices are notoriously hard to find via ultrasound. 

Finally, when the pain was still not letting up and the doctors were starting to get increasingly worried about the typhlitis,  so it was determined that a ct scan needed to be performed.  A ct scan is a very accurate diagnostic tool for both appendicitis and typhlitis.   Around 9:30 am he was given a contrast solution mixed with a Powerade to drink.  Finally at around 11:30 or so transport came and wheeled him down to the radiology department for the scan. 

Although the ct scans are a more definitive diagnostic tool than the x-rays and ultrasounds, because the ct scans emit a lot of radiation,  they tend to use them as a last-ditch diagnostic tool.  With all of the pain he was enduring, I was surprised when Spencer started talking about how nervous he was about getting the scan.  He had even talked the nurse into giving him something to help him relax for it, but fortunately someone finally realized that he had his heavy duty hospital machines mixed up.  While he was envisioning being stuck in the closed-in tube of an MRI machine for 45 minutes,  as you can see in this picture the ct scanner is much more open (only a couple feet deep) and only takes a minute or two.   He did not need to take any medication for his nerves. 

After the scan was done it was quickly realized (within 10 minutes) that it was for sure his appendix that was causing issues and not his bowels being inflamed which are indicative of the typhlitis. 

Thank goodness! 

As soon as the appendicitis diagnosis was made, he was immediately squeezed into the surgery schedule as soon as possible ( a couple hours later).  In the meantime, we were back in his room and he was writhing in pain.  The morphine did take the edge off, but his pain was still significant, especially with movement. 

At about 2:00 we went down to our favorite dungeon of the hospital, the pediatric sedation suite.  I was happy when we found out his surgeon was going to be Dr. Soutter, the same pediatric surgeon who  placed his central line.    He and his partner do over 400 appendectomies per year and we felt very comfortable putting Spencer into his hands.  We had a strong respect for him when he placed his line and like him even better now.

According to our understanding, a laparoscopic appendectomy is done by making three small incisions in the following places (NOTE:  after a glimpse at Spencer's belly, we noticed that he actually has the belly button incision plus two lower incisions, rather than one high and one low incision as shown in this diagram): 

image from laparoscopy . net

I'm not sure which is done through which incision, but carbon dioxide is blown in through one of the incisions, to inflate the abdomen enough to be able to see everything they need clearly.  A tiny camera is inserted through another of the incisions to help guide the surgeon to the proper place.  And the instruments are inserted in the other to remove the diseased appendix. 

Here's a glimpse at Spencer's appendix:  (Sorry, but I did warn you)

The whole procedure took about an hour and if he weren't already a patient at the hospital, he'd likely be able to go home tomorrow.   Normal eating and drinking can resume as he feels up to it. 

He was still in a considerable amount of pain tonight, but the morphine was helping him relax and get some much needed rest.  Too bad no one got the memo that mom needed some rest too, because I've still got kids up doing homework at almost 11:00pm.    That 5:00am alarm clock is going to go off way too soon! 

Apparently one of the biggest causes of post-appendectomy pain is caused by the extra air left in his system after having it blown into his abdomen for the surgery.  The doctor says the best thing he can do in the next few days is get up, move his body,  and pass lots of gas. 

Based on familial history, he shouldn't have any trouble with that last one.

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A couple more tidbits:

The doctors do not think the appendicitis and the leukemia were related and that the timing was just happenstance.  I am not sure about that. 

Speaking of timing,  his appendicitis attack was timed relatively well in that his chemo was already finished, thereby not interrupting the cycle, but it occurred early enough that his blood counts hadn't dropped yet.    Being neutropenic would have made surgery a much riskier procedure. 

His ANC was 9000 today.  Normal is 1500-8000.  Being elevated was actually a good sign in that it meant that his body had mounted a response to the appendicitis. 

Spence is the first one in our family to have his appendix out. 

Long Night and Surgery! :(

A mere hour or so after wowing the night nurses with his cool card tricks last night...

Spence was doubled over in pain and nausea. 

After a very sleepless night for both of us, morphine (for him), an in-room x-ray, an early morning trip downstairs for an ultrasound, and a ct scan, it's been determined that Spencer has appendicitis. 

He's been in a lot of pain, but hasn't lost his sense of humor as you can see from the picture he asked me to take of him with that sign. 

As horrible as it seems for him to be undergoing surgery in the middle of all this, the  appendicitis diagnosis was actually the best possible malady he could have had with the symptoms he had.  The other affliction they were worried about (typhilitis) is a  side effect in kids undergoing heavy duty chemo (like for AML), has almost identical symptoms,  and is much, much more serious.   The doctors were actually relieved when they learned it was his appendix.   Of course there are added risks to undergoing surgery while being treated for leukemia, so we are worried.  

He will have a laparoscopic appendectomy as soon as they can squeeze him in.  Probably 2:00 or 3:00 this afternoon.    His blood counts are still high enough that he will not need a transfusion before going into surgery, so that is good. 

Please pray for him.

Next Best Thing to Being There in Person!

Spence may not have been able to go to the Verizon Center to watch Jimmer and the Kings take on the Wiz tonight, but this autographed Jimmer photograph and Kings' jersey he got in the mail this week  came in as a worthy consolation!

  He was so excited for me to take a picture of him that he almost threw up from joy!

And Glen was so excited about it all that he drove straight to my favorite store (Michaels) and had it displayed in this beautiful frame within 12 hours of receiving it! 

  Thank you to Jimmer, the Kings, and whomever arranged for Spence to receive this package.  Despite his pained expression, it really did make his day! 

IT WAS AWESOME! 

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Update:

• Spencer was feeling nauseous last night, which is the first time during this process when it seems unrelated to anesthesia or exercise.     Thankfully, Zofran and Tums seem to be taking the edge off so far.  

• When I told my Dad that Spencer was feeling nauseous, he gave me a surprisingly heartless sounding response, "What's new with that?"  I was a little taken aback until I realized that apparently he'd misheard me and thought I said he was being obnoxious, rather than nauseous.   After I stopped laughing I had to agree with him that obnoxiousness is a common enough occurrence that it would hardly be worth mentioning.  :)

• Spencer has been able to get outside the last few days and shoot some lacrosse balls around the hospital courtyard.   The weather this winter goes down in history as officially the wimpiest winter in my entire life.   70 degrees in February?!  Next thing you know we'll be seeing  flowers starting to blossom...

this photo of real deal flowers blossoming in February is from my friend Karen's facebook page

• I've been informed by anonymous sources that Spencer's tutor is a Santa Claus look-alike who spouts  socialist ideals.    In other words, Spencer loves his 7+ hours of tutoring every week!  (insert sarcastic tone)

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"Botanists say that trees need the powerful March winds to flex their trunks and main branches, so the sap is drawn up to nourish the budding leaves. Perhaps we need the gales of life in the same way, though we dislike enduring them."

        - Jane Truax

Power of One

Did you know that cancer is the leading cause of death by disease in children in the United States?   Did you also know that more than 1/3 of all childhood cancers are cancers of the blood (like leukemia and lymphoma)?   

I'm sure you've all heard of the Race for the Cure or the Avon 50-Mile Walk, both of which facilitate raising funds for breast cancer research, but did you know that there are also organizations, like the Leukemia and Lymphoma Society (LLS),  which devote themselves solely to finding a cure for blood cancers?   

Although I consider my siblings and parents to be among my best friends in the world,  I am ashamed to admit that there are some of my 60+ first cousins that I wouldn't recognize if I crossed them on the street.  And yet despite the distance the years have brought us, they have rallied to our sides during this crisis and reached out in ways--big and small.  From shaving or donating their hair, to cards, to prayers, to messages, to generous gifts...they have been a wonderful support to us, for which we are very grateful.

Out of all the familial love we have received, one of the most personal connections we've made  through this has been with my cousin, Carol.  We grew up more than a thousand miles away from each other and only saw each other every couple of years or so at Hepworth family reunions, but immediately upon hearing of our news she was offering her support in a way that very few people ever could.   

You see, my cousin is a survivor of a blood cancer herself.  Sadly I don't even know what kind of lymphoma she had, but I do know that her words of advice and almost 10 years in remission have been an inspiration to us. 

So imagine how honored we felt, when she asked if she could ride in a 100-mile bike ride for the Leukemia and Lymphoma Team in Training in honor of Spencer.   Although always inclined to add my extra dollar at the checkstand to places like St. Jude's which specialize in childhood cancer research, never before has finding a cure meant so much to us and we are thrilled to be able to contribute to the cause in this small way.

While just a few decades ago, a leukemia diagnosis was almost a sure death sentence, advances in treatments have now made survival rates for some types of leukemia as high as 90%.  Survival rates for Spencer's type (acute myeloid leukemia subtype m5) are as high at 70%, depending on certain factors. 

I know many of you out there, especially those who are far away,  wish there was some way you could help us and today I am inviting you to go to my cousin, Carol's fundraising page and donate some amount, any amount, to helping find a cure for leukemia. 

Do it for Spencer and for the thousands of other children and adults who will be diagnosed with blood cancers this year. 

Click on the logo to go to Carol's  fundraising page: 

Thank you.

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Update

Spencer is 100% committed to sticking with the following treatment plan:

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"Changes can come from the power of many, but only
   when the many come together to form that which is invincible....
                            the power of one."  
                                                                                                    ~Bryce Courtenay

A Day at a Time

About five years ago, my brother talked me into starting a blog.  He convinced me of how cool it would be to be able to share pictures and stories with loved ones far away.  They could look at the blog when they felt like it instead of reading emails which would get looked at and forgotten.   We still had dial-up internet at the time and I was hesitant, but eventually decided to give it a try. 

It took publishing approximately two blogposts before I was 100% hooked.  I loved the way the photos and the words interacted together.   I loved that it was mess and cost free, unlike the scrapbooking I'd been doing up to that point.  I loved the fact that I had a way to share stories and photos as they happened.  And most of all, I discovered that I loved having writing and photography as creative outlets in my life. 

My blogging has changed over the years.  I've gone from "here's what we did today", to trying (mostly unsuccessfully) to be humorous, to starting the recipe blog, to sharing  parenting advice, to reminiscings of old-times, and to publishing FHE lessons.   Over the years, my blogging has become an important part of who I am. 

Then one day about a year and a half ago our little Ellie started having absence seizures.  In light of the current health issues our family faces,  it all seems so insignificant now, but at the time it really rocked our world and my thoughts on blogging.    For several months, the medications made her fatigued and grumpy and I had to pick her up early from school more often than not.  Suddenly she was a shell of the happy, talkative little girl she'd been before and we were sad as we watched her struggle.  (*see below for an update on her seizures)  

It was her diagnosis and wanting a safe place to share about it, that got me to split this blog off from the original.   Basically I wanted free license to be able to post boring updates on our family again and not feel like I was letting down all the people who didn't know our family who were coming to the blog for the lessons and articles.   

That was when, "A Day at a Time" was born.  I transferred all of the family related posts here and started fresh.  And it proved to be just what I needed.  Posting lessons and articles on the other blog has since fallen by the wayside, but it worked wonders in that I had a place to blog about our family again without trying to impress anyone.   My posts are often boring or silly, but they are 100% me and they are therapeutic for me to write.  Yearly we print the posts into books and have a wonderful family scrapbook/journal that will be a treasure for many years to come. 

When we learned of Spencer's leukemia, we briefly discussed starting another blog that would be just for him, but in the end we decided that since this was all a part of our family's journey and goofy blog address notwithstanding, we wanted it all to be in the same place...here on our family blog.   

Little did I know that day when I created this new family blog, shortly after Ellie's epilepsy diagnosis, how apt the title,  "A Day At a Time" would be.   Although we'd felt the wisdom contained in the title back then,  it's taken on an even deeper meaning for us the last few weeks. 

When I get overwhelmed or emotional, it's invariably because I've let my mind wander to our uncertain future.  But when I focus on being present in the here and now,  I feel gratitude for the beauty that surrounds me. 
                                    
The simple joy of being all together as a family for a few hours each Sunday for our traditional dinner at the hospital...


The joy of hearing my children's laughter ring through the halls of the hospital... 


And the joy of my teenage boy feeling well enough to tease me, the nurses, and his siblings (and aim a heparin shot at me)...



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Update

Spencer is  a little more tired than usual, but is still feeling and eating well. 

As per the new Sunday routine, the priest quorum met with Spence the third hour of church, taught a lesson, and gave us the sacrament. 

*Ellie still has many seizures a day, however they are now reduced in numbers and length.  The medication side effects have mostly diminished.  We feel like her seizures are in as good a place as they can be  and we are grateful for a patient neurologist who is working hard to find the right balance between controlling the seizures and minimizing the medication side effects.  With her diagnosis of Childhood Absence Epilepsy, it is likely that her seizures will be an ongoing issue for several more years before she outgrows them (hopefully).      

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"The happiest people I know are not those who find 
their golden ticket; they are those who, while in 
pursuit of worthy goals, discover and treasure 
the beauty and sweetness of the everyday moments. 
They are the ones who,thread by daily thread, 
weave a tapestry of gratitude and wonder throughout 
their lives. These are they who are truly happy."
                                                          Dieter F. Uchtdorf

Getting in Touch with Us

Just a couple quick notes about getting in touch with us....

If you've sent us an email that we haven't responded to, please don't take it personally!  If you were lucky and happened to email while we're on the computer,  it may have gotten answered immediately.  But, since until today we've had just one computer for the whole family to share,  I know there are emails that have gotten lost in the shuffle.  If we haven't responded to a question/request in a few days, please, please, please forgive us and try again.  Hopefully we'll be better now that we have two computers between us.   Thank you to several family members who chipped in and made that happen!  :)

Additionally, the notebook where we were keeping track of visitors, meals, and gifts has gotten lost in the shuffle between the hospital, home, and back to the hospital.  We are doing our best to remember, but please forgive us if we miss thanking you personally.

Truly we appreciate everything!  Every playdate or ride for our other kids, every gift, every card, every email, every visit, every phone call, every word of encouragement, every meal, every goodie, every prayer...it's all so very appreciated!   We have felt the power of earthly and heavenly angels sustaining us and buoying us up every step of this journey.   Thank you! 

Getting in touch:  

Email:
Lara:  goolds@verizon.net (I have a couple of other email addresses, but this is the one I prefer for personal communication.  Feel free to send important emails to multiple of my addresses and Glen's.)

Glen:  glen.goold@yahoo.com

Call us: 
hospital room: 703-776-4513
call or text:  (email us to get the numbers)

For cards/packages: 
Please send them to our home address, since the hospital has proved to be less than reliable in mail delivery  (email us if you need our address)

                           Spencer's room has been heart attacked!  Thank you Tindalls! 

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Update

Spencer is on his 5th day of his 2nd round of chemo, which includes receiving three types of chemo.  The daunorubicin (aka the "red pee chemo") he gets every other day for three doses, the cytarabine (ara-c) (the reason for his 4-times-a day eye drops) he gets  twice a day for 8 days, and the etoposide (the "blood pressure medicine" since it requires his blood pressure being taken every 15 minutes over the 4 hours it is administered) he gets every day for five doses.

Tonight is his last night of getting all three in a row. 

He is also on a variety of antifungal, antibiotic, anti-mouth sores, and anti-nausea medications....all taken preventatively.

It takes 7-10 days after the chemo is started for the side effects to kick in.  We expect the blood and platelet transfusions and other unpleasantries to begin sometime next week.    

They say that often times the mouth sores (mucosits) are a bit better the second time around.  The doctors have added a glutamine drink, which Spencer finds absolutely disgusting, as an additional preventative measure.  We hope it helps!

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      "...heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so     pure that 'angelic' is the only word that comes to mind." 
                                                                                                                        ~Jeffrey R. Holland