Super Hard Quiz

(Long-time readers of this blog know that I love making random quizzes about our life and promising prizes of gazillions of dollars for those who answer it correctly.  Too bad for you I don't have gazillions of dollars to offer, so instead I'm offering something much awesomer that money.  Anyone who answers this quiz correctly will earn the privilege of me mentioning their name in a future blogpost.  You will be famous and it will be awesome.  )  (ANSWERS TO THIS SUPER HARD QUIZ CAN BE FOUND HERE) 

Which one of the following statements is NOT true about the last few days? 

1.  Cami was nominated as lacrosse Athlete of the Week last week. 

2.  Spencer was caught in the middle of an almost-melee when he was sitting between two people who started screaming and cursing at each other in the middle of  watching "The Lucky One" at the movie theater. 

3.  Grandma Sandy is in process of teaching Emma how to knit. 

4.  Glen and I went for a much needed six-mile run.  It felt awesome.

5.  I actually beat Glen and his mom in an uber-competitive game of Scrabble. 

6.  Ellie randomly decided to make a ginormous "I Love You" banner for her 1st grade teacher. 

7.  Emma and Cami were on a 9-mile hike with the young women from church when a storm blew in, so they spent the last 3 miles running through the pouring, blustery rain. 

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"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."             ~Helen Keller

Cookies and Milk

My kids have me all figured out.
When they're feeling like they could use a little more mommy time
they know that there's one sure-fire method to get mommy all to themselves for a while. 

They ask to bake a treat. 

Not only do they know that mommy has a soft spot for fun kitchen projects
(especially new recipes that she can potentially post on the recipe blog someday), 
but they also know that mommy's sweet tooth is always looking for an
altruistic reason to indulge in some delicious treat!

 Nutritional content and calories aside, I'm of the belief that some
freshly baked cookies
along with a glass of (lactose free) milk
is the panacea for many of life's woes--

especially the woes of a seven-year-old cutie missing her daily mom time. 

And the woes of a mom who is literally and figuratively trying to find ways to eat up
this precious 11-day gift
of being together as a family again.  

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"Babies and young children have a natural gift of living life in the present, without guilt from the past or worry of the future. They embrace life with all of their senses and lose themselves in the moment. Each moment I have with my children is a gift they give to me. Being present in their presence is a gift I give to them."                                                                                          ~Ronnie Vehemente

Thank goodness...

for modern medicine...

even if it does take up an entire shelf in our fridge...

and make me drop my mouth in horror at the "cash price" we could be paying if we didn't have good insurance....

and max out the number of alarms I can set on my cell phone, including a 1:30am alarm (to administer a medicine) and a 5:09am alarm (to help get Cami out the door for seminary)...

Although I'm thinking that being at home this round won't be quite as restful as it's been in past times, we're still comforted by the knowledge that our entire family is under the same roof again!   

HAPPY DAYS! 

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UPDATE: 

• We are home and it seems like we have an entire pharmacy full of drugs at our house!  Previous visits home have only involved a fraction of the medications we're administering this time, but because of the infection he is recovering from, they just want to make sure their bases are covered!  

• Here's a glimpse of his antibiotic vancomycin which he needs to be administered three times a day (this the antibiotic that causes his Red Man Syndrome if he doesn't take Benadryl beforehand)....

• Because he still needs the antibiotic administered intravenously and we randomly don't happen to have a hospital IV pump at home, they prescribed these cool little contraptions that basically have the antibiotic inside of a balloon-like device inside this pressurized container.  When he the device is hooked up to his central line, the balloon starts depressurizing and the medicine is delivered at just the right speed.  Weird, but cool! 

• Birthday greetings for Spencer are starting to pour in!  Thank you for taking the time to shower him with love and words of faith and encouragement.  Spencer insisted that he not open any of the letters until it's actually his birthday, but his (and our) excitement level is increasing by the day! 

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" There are many kinds of challenges. Some give us 
necessary experiences.  Adverse results in this mortal 
life are not evidence of lack of faith or  of an 
imperfection in our Father in Heaven’s overall plan. 
The  refiner’s fire is real, and qualities of 
character and righteousness  that are forged in the 
furnace of affliction perfect and purify us and  
prepare us to meet God."  Quentin L.  Cook

IF...

...his blood counts stay up
....he stays fever free
...his chest pain stays away
...he continues to wean well from the heavy duty painkillers
...the home health care company can come with needed supplies and instruct us how to use them

then Spencer can go home tomorrow!!!!!!!!

Not only that, but the docs have discussed and decided that if all of the above continues, then....
....
....
....
....
....
He can stay home through his birthday (April 30th) and  return to the hospital for his bone marrow biopsy/readmission on May 1st. 

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"God is anxiously waiting for the chance to answer your prayers and fulfill your dreams, just as He always has. But He can't if you don't pray, and He can't if you don't dream. In short, He can't if you don't believe.”
― Jeffrey R. Holland

Prince Charming ?

Since I've heard from multiple sources that my posts have been a little on the tear jerker side of things lately, I've decided that today's post will be the exact opposite of tear jerker.  This post will be all about how having leukemia has made Spencer into Prince Charming.  Not the Prince Charming who wears frilly shirts, rides horses, and goes about rescuing fair maidens from scary dragons.  No, our Spencer has eschewed the Disney-esque version of Prince Charming and instead has become The Prince Charming of Hospital Patients! 

What does it take to be the Prince Charming of Hospital Patients?  In addition to totally rocking the no-eyebrow look, Spence is super polite, doesn't pee on the floor, and can take care of his own "downstream occlusions" in the IV line!  Combine these highly desirable patient qualities with the fact that Spencer can engage in semi-intelligent conversations and has been known to throw out flattering words to the nurses in his sleep (literally) and you can see a small glimpse at how Spence has become THE #1 pediatric hem/onc patient in demand!  The nurses literally fight over who gets to take care of him each day and many of them are so distraught when they don't get him that they will come to visit him regularly even when he's not their patient. 

***

Don't believe he's of Prince Charming quality yet?  Here's an actual sampling of some of the lines I've heard him use on the nurses in the last few weeks.   You decide.  

Nurse with mock exasperation:  "Why is your IV beeping again?" 

Spencer:  "I'm just purposely sabotaging the line so you would have to come back in here."

***

Nurse:  "It's been a while since I've seen you..."

Spencer:  "Yeah, where have you been?  I've been here waiting for you every day.  And every day with out you seems like an eternity."

***

Spencer:  "If you had been my nurse that night, then I wouldn't have needed my appendix out." 

***

Nurse:  "So and so keeps stealing you from me.  Maybe next shift I'll get you." 

Spencer:  "I'll just start being rude to all the other nurses, so you'll be the only one who wants me as their patient.  You'll be doing them all a favor and no one else will know the real reason is because I want you to be my nurse more often."  :)

***

Nurse (yawning):  "I had a hard time getting up and coming to work this morning." 

Spencer:  "But then you thought of me and got here as fast as you could?  Right?" 

Nurse (in full agreement):  How did you know?   

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UPDATE:

• Think of Spencer like Yoda, but instead of being little and green he wears shorts, defeats leukemia, and he's awesome. He's your bro—He's Broda!

• In Spencer's body, where the pain gland should be, there is a second awesome gland. True story.

• The reduced chest pain/lack of fevers is like the mini-cherry on top of the regular cherry on top of the sundae of awesomeness that will be his life when he can hopefully go home this week. 

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"As we look for humor, seek for the eternal perspective, understand the principle of compensation, and draw near to our Heavenly Father, we can endure hardship and trial. We can say,“Come what may, and love it.”  

                                                                                                                      Joseph B. Wirthlin

Motherhood Reflections

It is late and I wish my son would go to sleep.  I look over at his round, peach fuzz covered head tossing and turning while he fights sleep, and I marvel that he could have ever fit inside my womb.  I remember when the doctor placed Spencer into my arms for the first time, and for as joyful as I was to finally meet him, I also distinctly felt the worry of whether I could be a good enough mother to raise him to be the man that he was meant to be.   I never could have imagined then, the exquisite joy and the heart-wrenching aches that motherhood would one day bring into my life.

Each child that has come to our family since then has brought with them their own unique personality and set of challenges. God blesses us with these little people in our lives and they are everything to us.  We love them, nurture them, pray for them, teach them the best we can,  and then we hold our breaths and hope that our love and prayers are enough to get them to where they need to be.   To be the person that God intended them to be. 

I look at my oldest son now.  His hair is gone and his body gaunt, but I still see glimpses of the same Spencer we've always known.  He pores over college catalogs and wonders whether his grades are good enough to get in. He starts to tell me about a recruiting letter he just received from a lacrosse coach at an Ivy League school, but then his IV pump starts beeping and we are interrupted while we wait for the nurse to come in to change his antibiotic.   While the nurse works, my mind wanders and I find myself wondering once again if my mothering skills are up to par for this kind of challenge.  Parenting my younger kids from afar, while we spend our days at the hospital and help Spencer face the battle of his life.  It certainly isn't quite the motherhood journey I envisioned all those years ago. 

But then I look over at my son.  He has had his independence ripped out from underneath him in the very moment when his friends are spreading their wings, yet he only rarely has ever displayed any amount of self-pity. He is scared for the future, but does not allow that fear to overwhelm him. Suddenly I am comforted when I realize that through this journey,  that not only have I seen a truer glimpse of the man that he is becoming, but that I am also becoming the mother I was always meant to be. 

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UPDATE:

• Spence has been fever-free for 2 nights in a row.  This is good news!

• All tests (MRI, CT scans, bone scans, echocardiogram, angiogram, etc) have come back normal, however they have mentioned that they will likely repeat all the testing next week when his counts have rebounded.   Apparently when you have an infection when you have no immune system, your body doesn't fight and respond to the infection like it's supposed to (swelling, warmth, redness, etc).  When the body can't fight it,  locating where an infection is can be very difficult.  We're praying that the lack of fever means that whatever infection is brewing is  resolving itself with the antibiotics he's already on!  

• His chest pain has continued, but the nurse is going to attempt to wean him down to slightly less potent painkillers tonight to see if they'll do the trick.

• ANC is still 0, but monocytes and other blood markers are starting to rise, which means the neutrophils should start returning again soon.

• Cami had a cupcake making factory at our house this weekend.  She was hired by a friend to make 6 dozen cupcakes for a party and I think she had as much fun making them as the party goers had eating them! 

• I had the privilege of going to a Women's Conference this morning.  I loved the inspirational classes, good food, spiritual upliftment, and social time with friends.  Thanks to all who organized it!

• Thank you for making Spencer feel loved today by visiting him.  He loved it! 

• Spencer's 17th birthday is coming up on April 30th and we are hoping to shower him with cards and notes from across the country (and world?). Please help make his hospital-bound birthday special by sending him a quick note/encouraging word. Please email me for our address. goolds@verizon.net
  (PS feel free to spread the word to other nice friends / famous people you know/ people who live in foreign countries who may want to support him in this way as well.)

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"Motherhood is near to divinity. It is the highest, holiest service to be assumed by mankind. It places her who honors its holy calling and service next to the angels."

                                                                              The First Presidency of the Church of Jesus Christ of Latter-Day Saints

For Your Information...

Spencer has had 2 ct scans in the last few days, both of which have required an IV to be inserted in his arm, since the contrast dye they use cannot be inserted in his central line. 

Although Spencer's been hooked up to an IV through a central line in his chest for the better part of three months now and he gets his blood drawn almost daily, sometimes multiple times daily.  And he's also  had his appendix out, gone through several spinal taps and a handful of bone marrow biopsies....yet when it comes to being poked with a needle, he is not a fan.  Even the numbing cream did little to alleviate his worries, especially when the nurse informed him that she had to use a bigger needle than they even stock on the hem/onc floor.   

Lucky for me, we have nice friends that are keeping Spence's goodie plate well-stocked with delicious yum-yums (as Spencer likes to call them).  This homemade whoopie pie made by Jenny M. turned out to be a great panacea for soothing the pains of getting poked (and for keeping his weight up)!

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UPDATE:

• ANC is still 0. 

• The severity and persistence of Spencer's chest pain along with the daily fevers are completely perplexing and concerning to the doctors.  Nothing unusual was found on the MRI this morning.  Further CT scans were performed tonight.   They really hope to get to the bottom of it, so they can start treating the cause, rather than just the symptoms. 

• Still no blood transfusion. 

• In summary, Spence is exhausted from the low blood counts, is in continuous pain, and still has no immune system.  :(  

• Birthday cards have started to arrive for Spencer!  :)  Thank you! 

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“The Master not only foresees perfectly the growing power of the opposing forces but also knows what it is like to be mortal, He knows what it is like to have the cares of life press upon us. He knows that we are to eat bread by the sweat of our brows and of the cares, concerns, and even sorrows that come from the command to bring children to the earth. And He knows that the trials we face and our human powers to deal with them ebb and flow.


“He knows the mistake we can so easily make: to underestimate the forces working for us and to rely too much on our human powers. And so He offers us the covenant to ‘always remember Him’ and the warning to ‘pray always’ so that we will place our reliance on Him, our only safety. It is not hard to know what to do. The very difficulty of remembering always and praying always is a needed spur to try harder. The danger lies in delay or drift.”   Henry B. Eyring  (From Jen B.)

Family Pictures: Before and After

From the moment I saw this picture my sister snapped of us on Christmas morning, I was in love with it.  Not only did I like the way the matching pajamas all came together on us, but I also loved how we actually all were looking at the camera and smiling (mostly).  Even our dog, Rocky, whom we didn't notice was in the pictures until afterward, looked so regal and protective sitting there on the picnic table in front of us.    

Although looking back, I can see the signs everywhere....little did we know then the storm that was brewing in Spencer's body at the time.  And little did we know that this picture would be the last physical evidence of our "normal" lives.  A glimpse of our lives before our world was turned permanently upside down. 

Fast forward a few months....here we are now. 

 Spencer's body is weak, but fighting with all its might.   We are physically exhausted, but ever in awe at the generosity and kindness of friends and strangers alike.  While we miss being all together as a family,  we cherish  every second we do have together.  And we now pray with more fervency than ever as we long for the day when we can say again:

We are all here,

Father, mother, sister, brother,

All who hold each other dear.

Each chair is filled—

We’re all at home …

We’re all—all here

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

UPDATE: 

• Yesterday marked the 3-month anniversary from the day of his diagnosis. 

• ANC is still 0.   They think his counts aren't rebounding because of the infection he is fighting.

• His chest pain is still pretty significant, although it seems that they've finally found a pain medication that seems better at controlling it (dilaudid).  They did a ct scan and an angiogram yesterday to rule out a blood clot (everything was normal).  Sometime tonight or tomorrow (whenever they can squeeze him in) they're doing an MRI to rule out a bone infection in his chest. 

• They've identified the bacteria in his blood as a "normal" bacteria that is not a problem for someone with a strong immune system.  Unfortunately since Spencer's body is not healthy, they still need to take it seriously and treat it aggressively with antibiotics.  Although he's randomly spiked fevers for the last few nights in a row, in general they're pleased that the antibiotics they're already giving him seem to be helping the infection. 

• Because each blood transfusion offers a new opportunity for the introduction of otherwise harmless bacteria into his immuno-compromised body, the docs are pushing off giving him transfusions for as long as they can. His hemoglobin counts have been quite low for a few days now, so Spence is very fatigued.    With as low as his hemoglobin/hematocrit was today we expect that he'll get a full blood transfusion tomorrow.  (Hemoglobin=7.7, Normal=11.1, Automatic transfusion when counts are <7)

• His platelets were at 15 today (normal is 140).   They automatically transfuse platelets when they get below 10, but since he was having random nosebleeds, they opted to give him platelets this afternoon.  

• Don't forget to send your birthday greetings to Spencer.  He'll be 17 on April 30th and we're hoping to shower him with cards and letters from around the country.  (No gifts please).  
  Email me at goolds@verizon.net for our address. 

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“In our lives there is bound to come some pain, surely as there are storms and falling rain; just believe that the one who holds the storms will bring the sun.”  (Author Unknown.  Thanks to Kim B. for sending it.)

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. 
 
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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.   

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“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!) 
  

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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. 

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"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!   :)

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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. 

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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!

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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! 

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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!!!!! 

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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)