Working Hard and Playing Hard During Spring Break

Here's a little glimpse of our Spring Break: 

Monday:  yardwork with mom, made cinnabunnies with mom, playdates, Ellie overcomes her fear of sliding down the pole at the playground

Tuesday: yardwork with dad, matinee of Mirror, Mirror with dad, free ice cream at Ben and Jerry's

Wednesday:  more yardwork with mom, Frying Pan Farm Park with mom and friends



Thursday:  more yardwork with dad, Antietam battlefield with dad

Friday:  housework with mom, walk on trails at Eakin Park, Hidden Oaks Nature Center with mom and lots and lots of tadpoles

Sunday:  Visitors, Easter dinner at the hospital (made by Glen, Emma, and Cami)

Monday:  Cub scout field trip to MeadowLark Gardens, Cami and Emma walk 8 miles with YW to visit Spence in the hospital,  playdates with friends

All in all, it was a great week.  We did loads of hard work, but had something fun to look forward to everyday. 
 
**************************************

UPDATE:

Unfortunately Spring Break was not so fun for Spencer:

His fever went away.  Now it's back.  His chest pain went away.  Now it's back with a vengeance.  His blood tested positive for a bacteria.  Still trying to figure out which bacteria.  He's on loads and loads of meds.  Spence counted 24 pills in one day and that did not include all the additional intravenous medications he is receiving.  They've got both of the lumens from his central line hooked up to fluids now, to minimize the chance of introducing infection into his line.   Depending on the bacteria they find and how well he responds to the antibiotics, he may not be able to go home before round 4 begins.  :(    Unless something changes medically, we are definitely not doing transplant.   

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

“Ask yourself, 'How did God bless me today?' If you do that long enough and with faith, you will find yourself remembering blessings. And sometimes, you will have gifts brought to your mind which you failed to notice during the day, but which you will then know were a touch of God’s hand in your life.”                              –Henry B. Eyring

Easter in the Hospital

Easter morning in the hospital lacks a little of the pizazz and excitement of an Easter morning at home with a houseful of kids.   Instead of Easter baskets and giggling children, it is quiet.  Doctors and nurses come shuffling in and out just like it's any other day.  They're happy that Spencer's fever is gone, but worried that the blood cultures showed a bacterial infection.   I just heard over the loudspeaker that there will be a Roman Catholic Easter Mass in the hospital chapel at 10:00.  I note with disappointment that it's already past 10:00.  I've never been to Easter services for another religion before and it sounds interesting. 

The priests will be here soon to administer the sacrament and to give us a recap on the talks and lessons from church today.  In the meantime I'm trying to get into the Easter mode by listening to Easter music on youtube and by reading the account of Christ's death and resurrection in the New Testament.  I read in Matthew 28 when the angel told his mother, Mary,  "He is not here: for he is risen."   I've read those words numerous times before, but today they mean more to me than they would have a few months ago.  Although my firstborn son's trials are nothing compared with the suffering of our Lord Jesus Christ's, I feel that I now understand a little bit of the sorrow that Mary must have felt watching her son suffer.  And how great her joy must have been when she realized that He lived again.    

Later I read the account of the resurrected Christ's visit to America found in the Book of Mormon.  It's a story that most of the world does not know, but it makes sense to me that Christ would not just visit the people of Jerusalem, but would spread the good news of His gospel to His "other sheep" throughout the world.  Again my heart is touched in a more meaningful way when I read of how He "...wept and the multitude bare record of it, and he took their little children, one by one, and blessed them, and prayed unto the Father for them."   I weep when I think of how those Nephite mothers must have felt as they watched Jesus bless each one of their children individually.  Although I've always understood  on an academic level that Christ's love for us is both all-encompassing and very personal, lately that love has felt even more real.   The love that is sustaining us right now. 

It is the evening now and the rest of the family will be here soon.  There will be noise, chocolate, and giggling aplenty.  We will eat Easter dinner together--the first Easter dinner in my adult life that I will not have prepared even one small part of.   I look forward to the kids recounting to me the adventures of the morning and {hopefully} sharing some of the spoils from their Easter baskets.   Eventually we will discuss the meaning of Easter and try to share with them the great love that Christ has for each of them.  Although I'm sure they will impatiently wiggle and wonder when we'll be done talking, it is my hope that they feel at least a glimpse of the miracle and reality of the Atonement.

While this Easter has certainly been different than any other Easter I have experienced, the meaning of Easter hits home more than ever.  It is through Christ's suffering in the Garden of Gethsemane, His crucifixion, and His resurrection which we celebrate this very day that He has saved us from physical death and spiritual hell.  It is through Christ that Spencer will overcome his pains and sorrows he is now experiencing and it is through Christ that we can all be healed of the wounds we bear and have a hope for happiness beyond our ability to comprehend.  So today, I am thankful for the perspective that it gives me to celebrate Christ's victory over physical and spiritual death.  Because Christ succeeded in providing the atonement, however our journey ends, I know that Spencer, and all of us, will be saved through His marvelous love and grace.

"For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life."

"Red Man Syndrome"

UPDATE:

• His chest pain is back, so they've repeated the battery of tests on his heart.   Thankfully all of the tests came back normal, so they've attributed the pain to either pleurisy or costochondritis, both painful but harmless conditions. 

• Spence has a fever of 101.3....his first fever since the first round. :(   I had forgotten how fast things happen around here with fevers.  Within a half hour of the fever developing he'd already had blood cultures taken, Tylenol given, and antibiotics started.    His ANC is 0, so his immune system is at its most vulnerable.  We're praying that the cause of the fever turns out to be nothing serious. 

• Shortly after receiving his intravenous antibiotic (vancomycin), Spencer developed an itchy, bright red rash covering his head, neck, trunk, and back.  It was a pretty intense 15 minutes, while the nurse and resident came in and stopped the infusion, administered Benadryl, flushed his lines, and observed Spencer as he grabbed his neck in pain.  Thankfully his oxygen levels remained fine and they actually do not believe it is an allergic reaction, but a common reaction to vancomycin called "red man syndrome".  Basically it means that he will need future infusions of vancomycin to be prefaced with Benadryl and to be administered much, much more slowly. 

• Spencer's 17th birthday is coming up on April 30th.    He'll almost certainly be in the hospital on that date, so our idea is to  shower him with cards and letters from across the country and we need your help.  Feel free to send him kid-drawn pictures, notes of encouragement, cards, funny quotes, etc.    (No gifts please.)   Please email me at goolds@verizon.net or my sister Kristina at littlechickenator@gmail.com if you need our address.  (Shhhh...don't tell Spence!) 
  

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

Here's a pic I sniped of Spence yesterday while he tried to grab the camera from me.    Surprisingly he really liked it and posted it of his own free will to his Facebook account.  With him feeling miserable today, I find myself looking at it a lot, in hopes that he will be feeling like this again soon. 

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

"Look to the lighthouse of the Lord. There is no fog so dense, no night so dark, no gale so strong, no mariner so lost but what its beacon light can rescue. It beckons through the storms of life. The lighthouse of the Lord sends forth signals readily recognized and never failing. "  

 ~Thomas S. Monson~

New Room and The Cherry Blossoms that Weren't

Good news!!!!  After getting our hopes dashed this morning when they told us that we were still a few days away from being removed from isolation, things happened quickly this afternoon and he is officially off isolation now.  Unbeknownst to us, coming off isolation also meant that they needed us to switch rooms, so they could totally disinfect the other one.    Originally we were a little annoyed about the unexpected move, but after being here for a couple of hours we definitely are not complaining about the much faster internet connection than the previous room had and the fact that the new room happens to be the biggest room on the floor!  He's now in ROOM 514!   :)

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

After over 12 years of living in the DC area, we still occasionally get the random urge to go act like tourists for a day and see some of the sites that DC has to offer.  Of course we don't really act like tourists by standing on the left side of the Metro escalators and asking natives annoying questions, but we definitely do look like tourists  with our cameras slung over our shoulders and our constant checks on my sister's iPhone for the best walking directions to the next site. 

Last week's journey was to see the world famous cherry blossoms around the Tidal Basin.  I got the kids out of school a little early and then hopped on the Metro...

The kids enjoyed riding the Metro almost as much as they enjoyed getting out of school early.  Adam and his friend Caleb were our navigators on the trip, giving us a stop-by-stop countdown to when we needed to get off. 

When we arrived, we slowly made our way over to the Tidal Basin only to discover that we were a little late for the cherry blossoms, which apparently had all fallen off the trees the weekend before.   Next time we decide to be tourists I'll be better about doing our research beforehand.  :)

No matter to the kids though.  They were unfazed by the dearth of pink blossoms and thoroughly enjoyed the gorgeous day out of school exploring DC with their friends. 

I didn't mind the fresh air, good company, and sunshine too much either. 

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

UPDATE: 

• Spence's new phone number in Room 514  is 703-776-4514.  Please spread the word!

• His platelets were low enough again this morning that they transfused him.  Luckily he didn't have any random bleeding with the low platelets this time!

• It's spring break....please come visit Spencer!

• We met a new pediatric hem/onc patient today.  His name is Tim and he is 24 years old.  At first I was a little surprised that he was here on the peds floor at that age, but he informed us that  researchers have recently discovered that young adults under age 30 have a higher survival rate when taken care of by pediatric doctors and nurses rather than the adult oncologists.  Interesting!

• Spencer's ANC was 12 today.  We're not sure if it was a little hiccup or if his counts are actually going back up again.  Last time he stayed at 0 for almost a week before they went up, and this time he's only been at 0 for two days.  We shall see!

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

Lara's Quote:“Ask yourself, 'How did God bless me today?' If you do that long enough and with faith, you will find yourself remembering blessings. And sometimes, you will have gifts brought to your mind which you failed to notice during the day, but which you will then know were a touch of God’s hand in your life.”      –Henry B. Eyring


Spencer's Quote: 
"The closest I'll get to winning the Hunger Games is when I spot the last doughnut in the office kitchen."  --Anonymous

Random Reflections

It's 9:30.  The kids are supposed to be sleeping, but instead of the sounds of silence I keep hearing little snippets of happy conversation.  I am glad that they're so friendly with each other that sleeping seems like such an annoying interruption to their conversations, but I'm already dreading the "I'm-tired" fuss they'll put up as they do their morning chores tomorrow.   Since it's Spring Break this week, I don't have the heart to scold them with much fervor, so instead I  keep calling meek little "Time to stop talking and go to bed," reminders through their cracked door. 

Eventually the conversations wane and the house is quiet.  I am left with only the hum of the ceiling fan and the whirring of my brain going into overdrive.  I am reflecting on how much I miss certain aspects of our PL (pre-leukemia) life.  Mostly it's just the simple little things, like being all together under one roof and planning meals and cooking dinner for my family.   Inside I know that a day will come when our family achieves a sense of normalcy again, but tonight I am left wondering what that normal will feel like.   

Then my mind wanders again...

Although I recognize that our family has been blessed in countless ways over the last few months, I've caught myself getting grumpy and complaining a little more lately.  I could attribute it to not getting enough sleep.  Or monthly hormones.  Or being sequestered to the hospital room.  But in reality, although those are contributing factors, the fact of the matter is is that I am human.  For the most part, we have not felt despair, nor have we dwelt on the unknowns or the negatives of our paths, but even still, I continue to have bad days here or there.  It does not mean our faith is shaken.  It does not mean that God isn't answering our prayers.  It simply means that we are weak.  We know without a doubt that God has been guiding us every step of this journey and I hope that by sharing our hard moments here or there, that no one ever doubts the solidity of our faith. 

Throughout this journey we truly have felt the presence of  ministering angels, both heavenly and earthly.  Through these angels we have been the beneficiary of many blessings that we will never forget.  Long-lost friendships have been rekindled.  Distant relatives have drawn nearer.  We've been showered with meals and thoughtful gifts.  Countless words of encouragement have been heaped upon us.  And we truly feel the power of prayer sustaining us these hard days.  Your prayers.  We feel YOUR prayers and we will be ever grateful that you have not let us forget the goodness of God's great plan! 

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

UPDATE: 

• Spence's ANC is 0, which means now it's just a waiting game for his counts to pick back up again. 

• His platelets are (20), hemoglobin is (8), both low, but not quite low enough for transfusions yet. 

• The fact that it's Spring Break this week means he's getting visitors again!  :)   Even better....I got  visitors (and treats) today too!  (Thanks Charlene, Heather, and Jenny!)

• If all goes as planned, we'll get taken off isolation tomorrow.  Hopefully that means there will be no need to pace across the room and back  anymore. 

• We are 98% sure that we are NOT going to do the bone marrow transplant.  It has been a difficult decision making process, but all three of us feel like we have found the peace that we were seeking.   This means that he has just 1-2 more rounds of chemo before this is all done!!!!! 

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

I LOVE, LOVE, LOVE to hear children's voices being lifted up in song, so instead of a quote, tonight I will share this song that has touched my soul in a very real way lately. 

I truly do believe that God is a God of miracles. 

Dear Mom,

Even though it's been ages since I last blogged, I reassure that indeed we are fine.  Okay, maybe not quite fine fine, but fine enough given the circumstances.   

Spencer still has the stupid C-Diff. bug, which means that we are still on isolation and I am still grumpy.   It's not like the hem/onc floor is all that large anyway, but just knowing that we can't leave the room is making us all a little stir crazy. 

How stir crazy?   Stir crazy enough to discover that apple juice mixed with water makes for a good April Fool's joke for the nurse.  Can you tell the real deal from the apple juice mixtures? 

Well, neither could the nurse.   Apparently it looked so realistic that she didn't even second guess the realness of it and just recorded his output at 160 ounces for that hour.   It wasn't until Spencer mentioned something about it, did she even hesitate for a second.  Jokes just aren't very funny when they have to be explained. 

Speaking of funny, watching the kids play Jenga is funny.  Their laughs and screams when the tower falls, makes me  slightly less grumpy. 

You know Kristina, right?  Oh yeah, of course you do, since you're our mom.  Well, Kristina, who still claims to have scars on her arms exactly in the shape of my fingernails, heard that Spencer still wasn't gaining weight, she went and did something rather bold and daring (no she didn't come steal my clothes) to help the cause.  She bought him his very own waffle iron.  Now he has fresh hot waffles for breakfast and turkey wafflewiches for lunch every day.    The smell drives the nurses crazy and although they've told us that building management may not approve of the in-room cooking device, I'm just grumpy enough not to care.   

Here's another thing that doesn't make me grumpy. 

Spending a day at home with the kids and doing a fun kitchen project.  I've been seriously missing the kitchen lately and this easy peasy Easter project was the perfect way to combine quality time with the kids, eat some yummy food, and have the opportunity to do a little recipe blogging.  :)

One more thing that doesn't make me grumpy is General Conference.   What is General Conference?  It's a twice yearly event, where instead of going to church for that week,  we gather around our computers/televisions and enjoy spiritual enlightenment from modern-day apostles and prophets.  The messages are for our day and time and never fail to inspire me to be a better person. 

Well, I guess that's about it except for the update on Spencer.  Spence's ANC is 180, which means he's neutropenic again.  His platelets went down to 7 yesterday (normal is 140), so they transfused him STAT, especially when his nose started randomly bleeding.  He's also as stir-crazy as me, which means he alternates between being silly and challenging me to a lot of duels and being grumpier than me. 

Thanks for caring enough to read our boring letter.

Love,
L


PS  Thanks for the quote you sent me.  I love it and wish more people would send me quotes. 

"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness."                               
                                                 Isaiah 41:10    ( also a verse in How Firm a Foundation)

Isolation

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

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

One whole week without leaving the room! 

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

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

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

It's considered almost exclusively a hospital bacteria. 

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

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

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


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

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

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

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


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

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

How to Feed a Cancer Patient

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

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

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

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

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

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

Our Solution on How to Feed a Cancer Patient: 

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

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

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

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

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

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

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

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

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

UPDATE: 

• Apparently Spencer's rash is lasting long enough without letting up that the docs are now convinced that it actually IS due to a medicinal allergy.  So how do you figure out which of the gazillions of meds he's been receiving is the one he's allergic to?  By process of elimination, they've determined that the likeliest culprit at this point is the Bactrim, which is an antibiotic given to him every Saturday and Sunday as a preventative measure against infection.  He's been receiving it the entire course of his treatment, but they say it's not unusual for it to take time to build up enough in his bloodstream to start causing issues.  They'll replace the Bactrim with another antibiotic which will be administered intravenously once a month.    Spence is sure hoping that the Bactrim leaves his system soon.  He's tired of being red and itchy. 

• With three different meds that he's now allergic to (penicillin, ketamine, and now Bactrim), he's definitely going to need a medical alert bracelet when his treatment is done! 

• Ellie's stayed home from school today and yesterday while she recovers from a nasty cold.  We're keeping her far, far away from the hospital in the meantime. 

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

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

Bonus Day with Spence

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

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

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

We let the four oldest go on ahead, while we stayed back to golf with each other and to patiently wait for Ellie.  The golf course was several steps up from the normal putt-putt courses that we're used to and great fun was had by all. 

Ellie was only scared a little by the snapping crocodile, roaring wild pig, squirting frogs, crazy monkeys, and creepy tomb that we had to walk through, but when we passed those she was quick to join in the fun and the laughter!

 

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

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

Right before we left, I got the grand idea to try out the timer on my camera which I had just barely figured out how to use.  Although we'd just had family photos taken earlier in the week, I was excited, for once, to capture a photo of us all together in action somewhere. 

Afterward we dropped Cami back off at school for her lacrosse practice,  went home, ate dinner, and had a normal night at home.  Bright and early the next day we brought him back to the clinic where we learned that his marrow results were actually normal, then ran a quick errand, and took him straight back to the hospital for another month! 

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

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

UPDATE:

•  Docs treated Spencer with more Benadryl for his rash and itchiness that continued today. 

• 2-1/2 hours of tutoring...Spence was so excited!  (sarcasm alert)

• Spence's weight is down (55.4 kg.) and his phosphorous levels are high.  We're trying out darnedest to keep the boy well fed with practically anything he requests to eat, but it's beginning to feel like we're feeding a picky toddler who turns his nose up at everything and eats only tiny amounts!

• I swear I'm seeing the beginnings of dark hair resprouting on Spence's head.  My guess is that it will fall out again with the effects from round 3 chemo kick into gear later this week, but it was fun seeing it pop through again.  Spence was just relieved that it wasn't growing back blond or red, like some of the post-cancer hair regrowth stories he'd heard. 

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

The Dress

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

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

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

UPDATE

• Spence is covered with an itchy, itchy rash, but since he hasn't had any new meds today, the doctors are 100% unconcerned.   Even in the hospital, Benadryl is the solution. 

• Spencer's chest pain seemed improved today.

• Church today was a wonderful, albeit  emotionally exhausting experience for me.  I came home and took a long nap without even taking my boots off.  People who know me well, know that napping for more than 15 minutes is quite a concession for me.   Concession or not though....I needed it (the nap and the spiritual upliftment)!

• We ate dinner, had root beer floats, let Ellie open a couple more presents, and enjoyed family home evening at the hospital tonight.  We all started the night a little grumpy (fasting does that sometimes), but felt much better after some good food and a lesson about God's grace. 
  

  

  Thanks to the Ransoms for a yummy break-the-fast dinner and this fun keg of root beer.  The kids (and adults) loved it!

• We've been playing some rousing games of Jenga lately (Thanks Mr. S.)!  Spence loves to take out the riskiest blocks first to make the game interesting. 

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

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

Meet my family...

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

We now live scattered around the country, but deep inside we all still consider ourselves Minnesotans at heart.  Put us all in the same room and youbetcha we can whip around a good Northern accent and toss around some cold weather stories like nobody else.  In fact my brother Pete, now a father of four cuties, still loves to reenact the explosive Arctic blast of air that came through one year by jumping spreadeagled off ledges while yelling, "Arctic blast!" like he did when he was 8. 

Actually I stretched the truth somewhat when I said that we were scattered all over the country now.  While it's true that Kristina and Nate live in California and my parents and Tim live in Utah, it's also true that everyone else lives within an hour of us!  With 5/8 siblings and 10/12 grandkids living close by, we definitely hold some serious sway here in the DC area!

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

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

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

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

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

Snuggling with Grandma...

Playing Beyblades with Aunt Heather...

Chilling with Grandpa...

laughing at Uncle Pete....

and being silly with Aunt AnnaLisa....

Luckily being at the hospital didn't prevent Spencer from joining in the "fun" as well...

I am pleased to announce that, in all the extra time we've been spending together, that I haven't once had to inflict any of my big sisterly tortures on any of them.  That is other than snapping photos of them while they slept.  ;)

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

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


UPDATE:

• Spence is still experiencing chest pain, but luckily it is somewhat reduced from yesterday.  Mostly it hurts when he takes a deep breath or moves around much. 

• Today was his last day of receiving chemo.  It's a shorter duration than the first two rounds, but the chemo is much more intense, so it's still expected that he'll start feeling cruddy sometime next week. 

• His weight has been staying steadily around 57 kg. (125 lb.) for the last few weeks.

• Adam and Aunt AnnaLisa went to the Harlem Globetrotters game today.  With the tickets purchased a few months ago, it was an outing originally meant for Spencer and AnnaLisa, but since Spence wasn't available Adam was happy to take his place.  He came home laughing about all the players' fun tricks.  My sister AnnaLisa is so awesome to plan regular one-on-one outings with each of my kids. 

• Cami and I went out to eat with friends and then to the YW broadcast tonight, where we got to listen to some amazing inspirational messages. 

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

"Taking life by the yard is hard,
but life by the inch is a cinch. "

                                                                                           President Thomas S. Monson

A Birthday Girl

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

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


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

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

Another one of her classmates was sharing birthday treats the same day, so we opted against the fancy homemade cupcakes we usually make and went for these cute (and easy) store bought cookies!

She opened a couple of presents today (a dress and some Pokemon cards) and will open a couple others on Sunday when we finish celebrating her birthday together as a family here at the hospital.  We'll also eat her birthday dinner of choice together, Turkey Wafflewiches, which also happens to be a favorite of Spencer's.   


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

Happy Birthday Ellie!

We love you!

*************************
SEVEN RANDOM FACTS ABOUT SEVEN-YEAR-OLD ELLIE:

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

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


UPDATE:

• Spencer has been experiencing pretty significant chest pain today.  They've run a number of tests and determined that it's nothing to be concerned about, so now it's just a matter of treating the pain.  They believe it may be pleurisy, which is a harmless inflammation of the chest cavity that just needs to run its course.   Unfortunately the best treatment for pleurisy is ibuprofen, of which cancer patients aren't really allowed to have because of their low platelets and other blood levels. 

• Cami scored her first goal ever in her JV lacrosse game yesterday!

• Today I picked up a bunch of our old videotapes from 2002-2004 which I had taken to Costco to get digitized.  I can't believe how cute and little my kids were! 

                                                                Adam and Emma (2003)

• We've discovered that Pizza Hut will deliver pizza straight to the room!    I am sensing they will be visiting us a few more times before his treatment is done. 

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

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


Pray, He is there
Speak, He is listening
You are His child
His love melts around you
He hears your prayers
He loves His children
Of such is the Kingdom, the Kingdom of Heaven

  Janice Kapp Perry
(thanks Candice)