Baby Mine

It's naptime.
And this little one just fell asleep
As I sang Baby Mine.
He reached for my hand.
Curled up under his blanket.
And closed his eyes.

I finished singing and just watched him sleep.

Today has been a hard day for this little guy.
He has been more sick than normal.
Very weak and in a lot of pain.
Lots of tears and lots of whimpers.

It was beautiful to watch him rest.
I don't often take those moments
I'm usually rushing off to another load of laundry
Or some other task.
But today I stopped
Just for a bit.
And I'm so happy I did.

Casey

"Practically a Lady"

B is five today ...
Five!

As she showed us using all five fingers this morning
I was reminded of Gretl in The Sound of Music.
And Julie Andrews saying "practically a lady."

She is beautiful on the inside and out.
Full of imagination and personality.

Happy Birthday Miss B!
I adore you!! We all do :).

Treatment ... Phase Two: Consolidation

So Induction is over!!!  Wahoo!  We have entered the Consolidation Phase.  This phase is approximately 2 months (56 days).  The best news?  - no more steroids during this phase!!! Just look what those steroids did to our little man:

This was day 10 on the steroids

Day 28 of steroids

Wow.

His personality totally changed along with his eating habits (obviously).  He ate constantly.  He had no energy to do anything but sit and eat.  We tried anything we could think of to get him to try puzzles, or coloring, or sticker books ... but he just wanted to eat and watch movies.  And so we did.  We bought a TV for his room (I know...I know, I cringed at the thought) ... we gave him whatever he wanted to eat ... which ended up being mostly: cream cheese sandwiches, chips (yuck) and carrots with ranch dip.  He made us laugh with his antics when we brought him the "wrong" thing.  Especially when it was the "wrong" carrots (he actually wanted snap peas) ... or when the chips were in a bowl and he wanted them in a bag ... or when the sandwich was cut the "wrong" way.  He would scream and clench his fists, tightening every muscle in his body until his face turned red.  One time, he even made his nose bleed.  Ugh, I'm glad we won't face those days again for a little while.

So ... consolidation.  I was nervous for this day.  A week ago, the day after we ended induction, G had a lumbar puncture and bone marrow extraction.  The doctors told us that the tests on the bone marrow are two-fold.  The first test takes two days and will tell us if the leukemia cells are gone.  A second test is rather new and takes four days.  It is more finite.  Where the first test can say the results are negative, meaning 0% ... the second test tells us if there is a percentage between 0 and1% that the first test doesn't pick up (they called this an MRD rate - Minimum Residual Disease).  I found out yesterday that the reason for this second test is that some kids were relapsing even after a negative bone marrow scan.  So, research showed that if the more finite test showed a percentage below .011, then the patient continued on the standard risk arm of the Consolidation Phase with vary rare possibility of relapse (meaning: the leukemia returns).  If the % is above that, even by a little, the patient is moved to the high-risk category and the consolidation phase is more aggressive to prevent relapse.

Yesterday was the day ... and I was nervous.  My awesome husband took our other little people to school - his supermom came to be with the younger girls and G and I headed up to PCMC.  He was in good spirits.  He was able to stand on the scale to be weighed without crying (he did whimper, but let's not be picky :)).  We went into our room, the nurse accessed his port and flushed it with Heprin to make sure it was still working and then the doctor came in to deliver the blow.

G's MRD was .034%.  Bleck.  What does this mean?  Well, for starters it means that he is now high risk (but note: there is actually a "very high risk" stat - which we are not - yay!)  The doctor also explained that the cure rate for high risk children drops from 90-95% to 88-92%.  That wasn't my favorite piece of information.  :-/.  But essentially?  It means that home-health will now be administering chemo at home for four days of the week.  And he will be taking an oral chemo for 14 days.  We will still be going in every Monday for the next three weeks for lumbar punctures and G will get chemo in those as well.  He is now receiving the type of chemo that will make him pretty sick - so he'll also be taking a lot of Zofran.  One piece of good news - there is a positive to him still being in diapers - this type of chemo cannot stay in the bladder for long without causing some significant damage - so....since he doesn't know how to "hold it." I don't have to worry as much about that concern.... I know that may seem like an odd bit of good news...but silver lining peeps!  I'll take whatever I can get :)

We know this isn't the best news...but it's definitely not the worst and we remain very hopeful.  We know he (and we) are still being watched over.  He is an amazing little boy.  So resilient.  So sweet.  So smart.  And so loving.  The nurses love his squishy cheeks and how happy he is when he says "goodbye!"  So...here's to the next 4 weeks!!...after that, it is all count-dependent again (meaning it depends what his blood count says - his body dictates what we do next :)).

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