Treatment ... Phase One: Induction

The treatment starts with what they call "induction phase" and is the same for all types/levels of leukemia .... Essentially?  Eradicate the leukemia cells.  That phase lasts approximately a month (28 days) in which G will have weekly chemo treatments: the nurses came in dressed in purple hazmat clothes to administer the chemo.  Then whenever we changed his diaper, we wore gloves and place the soiled diaper in a specific hazmat trash can.  His diapers have to be changed frequently (read: newborn phase ;)) and we consistently put on a diaper ointment because of what the nurses term: chemo-pee.   His medications also include two rounds of steroids a day (which increase his appetite and his irritability/aggression), zantac twice a day, a drug called septra twice a day on Mondays and Tuesdays, more lumbar punctures and bone marrow tests.   At the end of this phase, the leukemia should be in remission.

Post surgery to implant the port in his chest

 G's journey began with a surgery to implant a port in his chest to aid in future chemo treatments.  This will allow him more freedom with his arms (no more IVs) and help him be more comfortable.  The surgery would also include a lumbar-puncture to see if there were any leukemia cells in the spinal fluid and a bone marrow extraction to determine the percentage of leukemia cells in the bone marrow.  He was to have surgery Saturday, so wasn't allowed anything to eat or drink.  And as luck would have it, the surgery was postponed due to emergency appendectomies.  So G ate a little dinner and then began fasting again for surgery the next morning.  After more emergencies further postponed his surgery to the afternoon (note to self: try to not to be diagnosed with cancer on the weekend), we escorted G down to the OR (I stayed on the bed with him the entire way down).  It took coaxing and more coaxing to get him to wear a mask and then down the elevator we went.  The anesthesiologist introduced himself, explained what would happen, asked for questions and then kept looking at me strangely (I was still on the bed)....finally he asked if G would go in without me, to which I said "Ummm, doubtful."  They brought out a solution to put into his IV and G started to cry.  Then in an instant, he stopped, deep in sleep.   The anesthesiologist stooped to pick him up and carried him away from me and his dad.

Braving yet another blood-pressure cuff

The port surgery went well and the good news was that there were no leukemia cells in the spinal fluid ... whew.  So, the doctors said that because of his CBC levels (complete blood count) and the negative on the spinal fluid he was in the low to medium risk category...and if the percentage of leukemia in the bone marrow was low, he could be moved to the low risk category. 

It takes days to get back results for bone marrow scans.  We were never told the results.  I'm not sure why we kept forgetting to ask - probably due to all the new information we received each time we went to clinic.  But finally, about three weeks ago, I remembered to ask ... and the answer was 98.5%.  Woah.  Needless to say, he wasn't moved to low risk.

G received two blood transfusions during induction.  Once while in the hospital and once in the middle of the 28-day induction.  Blood transfusions are crazy.  It is a full-day affair.  More so for G because he has an antibody in his blood which requires some extra prep time once the blood is ordered.  (further note to self: try not to need a transfusion on a Friday when you have to return for chemo on Monday ... not enough interim time for a 2 year old).

Feeling much better without all the IVs

I am amazed with G's strength.  I'm in awe of it, really.  He acclimated so quickly to all the pokes and prods.  He, of course, is still two, and so everything annoyed him at first.  But I almost teared up when, on day two at the hospital, the nurse came in to get vitals and he just held up his little arm without even looking at her.  Then, when we left the hospital, he was as animated as could be.  So excited to be outside.  That excitement carried thru to the first few clinic appointments (which are every Monday).  He was thrilled to actually be getting out of the house.  However, that euphoria was short-lived - about 1.5 appointments to be exact.  Finally, at the end of our third visit, as we headed toward the door, this conversation ensued:
G: We going home now?
Me: Yes
G: And we never go back to the doctor ever again!
Me: I wish that were true, buddy.

Casey

A Mother Heart

Years ago, I heard this conference address entitled A "Mother Heart".  I've often reflected on that title as I've made various decisions pertaining to motherhood.  Asking myself:  Am I doing the right thing?  Are my actions consistent with my desire to truly be a mother?  Those answers are sometimes hard to face.  It is especially painful when the instinct of my heart is in stark contrast to what is best.  I've never really thought that could be the case ... until recently.

That first Friday my husband dropped Baby G and me off at Primary Children's Medical Center, I had a bit of a sore throat.  On Saturday, a cough starting developing.  By this time, we knew G's diagnosis and I started wearing a mask.  What was probably due to stress and the oh-so-awesome sleep that hospital beds afford, I really started getting sick.  The sore throat persisted, accompanied by really nasty coughing, painful headaches and some sneezing.  I kept telling myself  "I can be strong and make it through this to be there for Baby G."  He and I have always been quite close.  And I hated the thought of him going through this without his mama right there to comfort him.  Then on Tuesday morning, the doctors came in to show me G's recent blood levels and my heart dropped.  They weren't bad ... they were actually fairly good for someone with leukemia ... but, as expected, his ability to fight off germs was dropping rapidly.

I couldn't stay ... but how could I leave?  How could I leave my baby in the hospital?  Yes, his daddy would come and be with him.  But I am his mama.  I am the one he asks for when he gets hurt, or is crying, or when he's sick.  And here he is, the sickest he has ever been .... hurting more than he has ever hurt ... shedding more tears than he has ever shed ...  and I felt compelled to leave.  I was so torn.  I felt irresponsible staying ... and irresponsible leaving.  But leave I did.

I called a good friend on the way home and cried (I know, bad-driver award).  She's a super positive person and helped the tears dry as we talked about good things.  Then I came home to a slue of do-gooders steam-cleaning my home and the tears almost returned.  They were bleaching every bleach-able surface ... packing up the catch-all room to get it ready for Baby G ... steaming my bathroom (heaven help me) and all of my walls.  My mom - Garret's mom - Garret's Aunt Shaun - I love those women.

Two of my other children were also sick - same symptoms.  Come to find out - we all had Influenza B.  Really?! Good grief!  Baby G was scheduled to come home the next day - what to do?  I called Garret - the hospital wouldn't keep him another day.  I called his pediatrician - she was nervous and ordered Tamiflu for the whole family.  And we sequestered everyone.  Everyone wore a mask for two weeks.  I stayed in my bedroom for an entire week.  I could hear G whisper as he went in for his nightly bath - "There's mama's room - shhhh! she's sleeping!!"  My heart would break every time - Is that what he thinks?  That I stay away because I'm tired?  Please tell me he won't remember this.  Please tell me I'm doing the right thing.

It would be almost a month later, as we came to the conclusion of the first phase of chemo, that I would be assured that yes, we did the right thing.  All those family prayers in the hallway with little people sticking their heads out the door ... all those movies ... all that Tamiflu ... all of those essential oils that made my house smell like an apothecary .... It was all worth it.  G made it through chemo-induction without getting sick.  And when prior to his lumbar-punctures, the techs would ask if he'd been exposed to Influenza in the past 30 days, I would have to say yes - but this mother heart knows that we did EVERYTHING we could to keep him safe.

Casey

Full Steam Ahead

My hands are shaking a bit with anticipation as I begin this new post.

I've anticipated what my next post would be for several months ... it will be much different.

I anticipated reporting on my first ever half-marathon ... and the fact that my friend and I made it into the newspaper - awesome :).

Instead, I'm brought to my long-upon-the-back-burner blog to record some rather heart-wrenching news - oddly enough, it's not too far removed from the newspaper link above.  How little I knew that the would-be returning post about my first ever half-marathon race and the actual post about a race newly imposed upon my little family would essentially be the same: a race against cancer. 

At approximately twelve in the morning on Saturday, February 9th, an MD Fellow at Primary Children's Medical Center entered the dimly-lit room where my two-year old son and I were fitfully sleeping to tell me that the results of the blood-smear from a draw taken just after we arrived the previous evening showed leukemia cells.  Was I still sleeping?  Wasn't he supposed to wait til midday, when my husband was there ... have us walk into his office (that would look more like a study) ... invite us to sit down in big leather chairs (at which time we would hold hands as we knowingly looked at each other) ... then, while melodramatic music played in the background, he would deliver the news that our youngest ... our baby of just two years ... had leukemia?

Instead, I sat bewildered, with my child sleeping at my side, looking at the doctor and the clock intermittently.  The life-changing news was delivered in about ten minutes after which he left and the young nurse came in.  I looked at her and lost it.  I wept.  I wept out of confusion, bewilderment and loneliness.  A thousand thoughts were flying through my mind.  "It's midnight ... should I call my husband? ... should I wait til morning? ... shouldn't he get a full night's rest before hearing this devastating news?" I felt somewhat protective ... as though I should somehow try to take the brunt of the news myself to shield my family from the fear.  All these thoughts and more raced in and out of my mind in a matter of seconds.  I picked up the phone.

Much to my relief, my husband wasn't sleeping.  With voice shaking, I delivered the news.  Wishing desperately for him to be at my side, I heard him weeping as he tried to ask questions.  I explained that they still didn't know what type of leukemia it was, but the devilish cells were evident. We were to find out later that morning that baby G has Acute Lymphoblastic Leukemia (ALL).  The MD said of all the leukemias to have, it has the best prognosis for young victims.  That, however, doesn't lessen the hill-laden battle ahead.

Much has transpired (from ironic & somewhat humorous to touching & infinitely inspiring) in the 7 days since that fateful diagnosis.  And much (if not all) of it will be addressed in other posts (I feel a desperate need to document it all, but don't want it to encumber one dreadfully long post :)).  We have been literally encompassed by love and support.  Dear friends and neighbors have rallied in ways we've never before witnessed...at least not on our behalf as we've never been placed on such a precarious journey.  Family members have driven for miles to come to our aid and lend support.  Teachers from preschool to elementary have cried and mourned with us as they've watched over our little ones placed in their care.  The shock is beginning to subside as we find our "new normal."  We are humbled ... We are hopeful ... We feel a rare happy peacefulness that we can only attribute to being wrapped in the arms of a loving Father in Heaven and His Beloved Son.  We believe in Their love and Their ability to carry us.  We know They have wiped away tears and absorbed many of the fears and pain.  We look to Them for guidance to do what is best for we know that G is as special to Them as he is to us, perhaps more.

As we left the hospital on Wednesday to bring G home at last, my husband pointed out a clever McDonald's billboard ad.  Neither of us are coffee-drinkers, but we admired the skill of marketers to draw in those that are by showing a McD's styrofoam cup with wisps of steams curling through words that read: Full Steam Ahead.  I'm once again struck with the oddity of how a billboard can enlighten my life.  Two years ago, the words Utah Valley Marathon on a billboard frankly catapulted me into a romance with running.  Two days ago, the words Full Steam Ahead reminded me that while the road may be uphill and the days may be long and I may wish for simpler times, the best way to face it is Full Steam Ahead.  Always moving forward.  Actively engaged.  Not merely to meander along or just try to survive but to forge the path with full steam and confidence in Him whom we trust. 

Thanks for taking this journey with us.
Casey

The Things My Heart Decides

I'm not a runner.  Well, I wasn't a runner.  Okay, that's not entirely true either.  I ran in high school, but mostly because anyone (everyone) could join the track team.  No embarrassing, possible esteem- crushing try-out required.  So, I ran.  Then, I ran a little in college.  Only because I was too miserly to throw money into a gym pass.  But once graduation came - the running left.

Then, I got married.  And G Mac wanted to run.  So, we started running in the morning.  And I got injured.  "Self-inflicted whiplash" is what the MD termed it.  Seriously?  Terribly true.  Inflicted while trying to dodge an early morning sprinkler that got the best of me.  Hence, running left again.  But this time, it left for a LONG time.

In fact, I started talking like I'd never run in my life ... "I'm not a runner," I'd say.  Don't get me wrong, I had great admiration for runners, marathoners, 5Kers ... and the like.  But, for me, it became an eye-rolling, never-in-my-life-would-I-do-that-to-my-body type of activity.  I'd rather elliptical or spin my body into submission.  Or even walk ... but run?  Nah.

So, imagine my almost disgust, when two plus months ago, I'm driving along the freeway, singing to the radio, casually viewing the varied billboards and of a sudden my heart does a double-flip, my stomach fills with a thousand butterflies and my mind takes on a strange, but sweet sense of anticipation.   I try to shake it off, visibly shaking my head and inwardly screaming, "Are you crazy?"  But the feeling comes stampeding back when I look again to see the giant ad picturing a silhouetted runner against a sunlit mountain range.  And along the bottom ran the words in white -  Utah Valley Marathon.

I'm pretty good at dismissing thoughts and feelings that my mind deems partially insane.  And I followed suit with this odd experience.  I didn't even tell my husband - which, if you know me, that's truly saying something (I tell the poor guy everything)!  But the blasted feelings would randomly resurface.  Especially when G Mac started training for a triathlon sprint.  Though, he did most of his training during his lunch hour, I could see and sense the change in his demeanor and those nasty butterflies would come back (yes, I realize that most of those intestinal flutterings were of the I-love-this-guy variety - but my mind was fairly certain the a portion could be attributed to the not so welcome you-need-to-run-again kind).

What totally did me in though was when I surfed over to a friend's blog and the recent post was titled, "Considering a Half."  It took me half a second to decide to call her.  When I did,  I told myself that I was just going to ask her about it.  But when I said, "Are you really thinking about running another half?"  She said, "Yes!  Do you want to run it with me."  Sheesh ... hook, line and sinker ... I committed.  To be truthful, I knew that my heart had already committed itself that day on the freeway (note that I seemingly have no control over what my heart sometimes decides on its own - that's only happened one other time - insert smiley face).

We started training this week.  The first day I thought I would DIE.  I put on a brave face (I think).  But inside, I was saying "What am I doing ... and why in the world am I doing it?"  Luckily, I have a pretty strong heart and an incredibly vivid memory.  So, the minute those questions flew to mind, I could see the billboard again.  And, surprise of surprises - it feels great!  I mean really great.  So now I guess I'm a runner.  And the littles think I'm awesome (how's that for a great, but unexpected byproduct of my heart's executive decision)!!

Just so you know, I'm really not crazy - so, obviously I'm starting with a half.  But someday, I plan to be that silhouetted runner in the Utah Valley Marathon.  I wonder what my heart will think of then.

Over the [Big] Top - B's Birthday Celebrations

Umm, yeah, this is only a MONTH in the making!!  So sorry for the delay, but anticipate no longer!!!  Here's to B's Birthday!!

 Happy THIRD Birthday B!!

I can hardly believe that my little B is three!  To be completely honest, I feel like she should be 4 or 5 with how long she has been talking, wearing big-girl undies, and sleeping in a [semi] big-girl bed! 

Now most of you who know me, know that I got my enthusiasm for birthdays from my mom! [love her] ... BUT where I got my overwhelming need to completely redecorate the house for the celebrations remains a mystery ...

We (the littles) decided on a CIRCUS theme for the birthday - so I began the hunt for items to turn my living room into a Big Top!  At Xpedex [heart that store] I found red and white rolls of plastic (granted, it is typically used for tables, but would be perfect to create a red/white tent!) 

Next, was a given ... balloons!  I don't think we've ever had a birthday without a trip to Roberts for their helium balloons, but given the height of the intended guests, we opted for blowing them up ourselves!  G Mac and I had major de-oxygenated headaches!!  I even thought ahead, and bought a hand-held balloon blower-upper, but it can still get super tiresome when you're talking about more than 100 balloons!

Next, a slide!  I had G Mac "clean" off the little tykes from the backyard and bring it in - and given the age group - it was the perfect addition!!  

And here is the result ... PRE-guests!

Like I said, a little OVER the top!  But the littles thought it was awesome!!  See the poses below!

This brings me to the party favors ...

*Red clown noses*  *Star-shaped glasses*  *crazy-colored clown ties*!!!!

For the snacks ... POPCORN [of course] and Red Vines

Now the cake ... I remember my mom laboring for what seemed like ALL DAY  to make super elaborate cakes for our birthdays ... again, I inherited the DESIRE, but not the patience, and definitely not the talent ... so here is what I ended up with ...

 

...though he's not one of my mom's [nor one of my best] I'm kind of in love with the little guy!!!

Aside from the normal festivities [cake, presents, singing, etc] the day also included ...

This cutest clown game from Zurchers.   Perfect for the young'uns because they don't have to wear that pesky mask that comes with the "Pin the ... " games.

Walking the "tight" rope!  We even got one of the moms to try!!  Excellent.

 

We actually started everything off with a balloon fight [of course] and the slide was an obvious hit!!

Then we showed a Little People circus video!! 

I also included a circus coloring page to calm things down a bit before the cake [note to self: not everyone is able to wait for the cake - LOL].  All in all - SO FUN - even had time to chat with adorable friend Kelly [don't you love her scarf ... and boots ... and purse - so stylish, that girl!!!]

And - no surprise - G Mac got in on the fun - While we waited for parents to come get the kiddies, he started DOG-PILING!  [love that man] - [he also made the most awesome circus-birthday-party-themed compilation of songs on CD - VERY cool - anybody want a copy??]

 

 And after all is said and done ...

 

Baby G FINALLY gets to play in the balloons after the guests had gone safely home and Granny could keep a close eye on him.

Lots of work - but soooo worth it ... and then I had a HUGE nap ... whew!!!  

Guest Post ... Monday Memories

As many of you know, I have a favorite blog ... one that I follow pretty regularly ... So Buttons.  The creator, Megan, is a wonderful friend.  Her blog features a regular post, in which she selects an past picture from her files and writes about it.  I LOVE this idea (and might just mimic it for Copper Kettles - so keep an eye out!)

Well Megan recently moved and for a time didn't have access to her files.  So, she began asking friends to guest post ... and she asked me ... WOW, I was flattered.  My very first guest post is scheduled to post today at So Buttons ... sooooo ... go check it out!  Then come back for B's Birthday Report!!

Friday Favorites

Listening to the radio
Listening to the radio while driving
Listening to the radio while driving with the windows down
Hearing an all-time favorite song whilst doing all of the above!
Mr. Big's To Be With You (love love LOVE that song)

As a side note : I must acknowledge that not all appreciate my taste in music which was made apparent to me when I tried to find the above-mentioned song on iTunes and it is a mere 69 cents!  Ha! - awesome for me!! 

I've found that my taste in music really has more to do with the memories associated with the song than the song/lyrics itself - though they play an obvious role.  To Be With You was freshman year of college.  Barely 19 + dorm-life + superb friendships + spring in the air + dancing down the hallways +  cute boys + tennis + new car... all tallied up to a virtually carefree (if you don't count those nasty finals) collegiate wonderland. Ooooh! - love those memories.

So when I hear Mr. Big on the radio... the windows come down ... and the littles know that it's time to dance in our seats and sing (loudly) ..."I'm the one who wants to be with you!!"