Ellie's Super Star Team - Day 546

So far in this journey, we have met some amazing people who have helped take care of Ellie (and us at times).  I wanted to do a quick post to acknowledge just a few of the many people who have touched us with their kindness over the last 18 months. 

Dr. Lacayo

Dr. Lacayo is Ellie’s primary doctor and the one who is able to calm us down when we are worried or have questions about things not going right.  We are so lucky he is the doctor overseeing Ellie’s care. 

Carly

Carly is Ellie’s Nurse Practitioner.  While Dr. Lacayo oversees Ellie’s treatment and is always there for questions, Carly is the one who we see on a weekly basis.  We had two NP’s before we met Carly.  One left after 3 months to move to another state, and the other after 3 weeks to take another job.  When we first met Carly, Ellie was at the end of Consolidation and to say I was weary of having a 3^rd NP would be an understatement.  I was in full momma bear mode and was determined that Ellie have the best care possible…poor Carly.  She took it all in stride with a smile on her face (including me asking her if she had any plans to go on maternity leave in the next 2 years…what was I thinking!!!) Over the last year Carly has always been there for Ellie and myself.  On days when we are scheduled for just chemo, she almost always stops by just to check in.  I know if I email her, I will get a response that same day if she is at the hospital, which when you have pressing issues is such a comfort.  She is the most organized person I have ever known and makes sure that Ellie’s appointments are always scheduled, meds re-ordered etc… And most importantly she is great with Ellie.  Ellie took to her quite quickly and now when we go to the hospital expects to see her.  Even when Ellie is feeling bad, she will usually give Carly a smile. 

Analisa

Analisa is Ellie’s social worker.  She is currently out on maternity leave, and we miss her but look forward to her coming back.  She is one of those people that always knows the right thing to say or how to comfort you when you are so scared. 

Nurse Kam

I can’t remember when we first met Kam.  She works in the day hospital and is always so genuine.  She has knit two beautiful hats for Ellie.  I always feel completely comfortable and confident when she is taking care of Ellie that things will go smoothly. 

Nurse Jill

I think we met nurse Jill sometime last winter.  She has kids close to Timmy and Ellie’s age and seems to just be able to relate to normal kid stuff as well as the cancer stuff.  There are days when I go home and tell Jeff we had the “all star team” today and that always means at least one of the nurses caring for Ellie was Jill or Kam. 

Nurse Michelle

Michelle works in the Day Hospital and often also works in the poke and go room where Ellie gets her labs drawn.  Michelle is always a cheery face and is an avid swimmer and always talks with us about Ellie and Timmy's progress in their swimming lessons.  

Nurse Chiyeko

Thankfully we haven’t had Chieyko care for us for a while as she works only on the inpatient side.  She cared for Ellie a lot right after diagnosis.  I felt like she and I immediately bonded because she has young twins too.  She is one of those nurses that just seems to know everything.  I will never forget when Ellie was inpatient and pretty sick, and she told me she thought Ellie had C-Diff and they should test for it.  The resident on our case didn’t think so, and the doctor seemed indifferent, so we didn’t test for it and sure enough 2 days later they finally tested her and she had it.  Chiekyo also, knows Ellie loves baby dolls and would always make her fun things for her babies (baby bottles filled with cotton balls (milk), real diapers for her baby and a bunch of other creative things).

Nurse Maggie

Maggie took care of Ellie last fall for all of our inpatient chemo days.  I think all the patients who go over the PEC (the satellite campus of LPCH) love Maggie.  She was great with Ellie and again made me as a mom feel completely confident.  Timmy and Ellie still ask when we are going to Maggie’s hospital to visit her.

Nurse Stephanie

Stephanie was the first nurse Ellie seemed to really be comfortable with.  She took care of us right after diagnosis.  She was a travelling nurse, so sadly for us, she moved on to another hospital, but we still have her picture on our refrigerator and Ellie still remembers her fondly. 

Matiana

Matiana is the medical assistant who takes all the vital signs.  Ellie (and Timmy) have loved Matiana from the day they met her.  She always has a smile on her face and is so great with all the kids. 

Roger

Roger is part of our welcoming crew (along with the Phuc and Andrew mentioned below).  When you arrive at the hospital you have to check in and get your sticker with your photo on it.  Roger is always there bright and early and greets us with a smile.  After only seeing him a few weeks, he remembered our names which to me was amazing considering the 100’s of people who come through those doors.  He also always gives Ellie her own “fun sticker” and makes sure to send her home with one for Timmy too. 

Phuc and Andrew

Phuc and Andrew are two of the valet car attendants.  Since, the hospital started construction in October 2011, all oncology patients are supposed to utilize the valet services due to the poor air quality outside the hospital.  Phuc and Andrew are always there to greet us.  They know when Timmy is in the car he gets to carry the “ticket” and when it’s just Ellie she gets it.  Ellie looks forward to seeing them each time we go to the hospital…and on our most recent trip to the ER, as we were driving in the middle of the night, she asked if she was going to get to see Phuc. 

There are so many others from the many nurses at both the day hospital and 1 North, to the front desk people who get us checked in we are so lucky to be at LPCH surrounded by people who truly care about their jobs and our daughter.  

Together - Day 535

Fall final exams are about here and I am supposed to be grading but just doesn't seem to be happening tonight.  There are a lot of opportunities to reflect this time of year.  Perhaps it is the shifting weather which forces some variances to our day or maybe the end of the semester where the daily grind has turned into a furious final push....or maybe its the soccer season that has its own roller coaster of emotion, all be in within the proper perspective, where you get some insight on how progress is taking shape.  Within our cancer family world, there are stories everyday posted for us to read about kids who are very likely experiencing their final Christmas.  The joy shared through events on a particular day to just LIVE right now is so thick in these posts, you would think a full month occurred in a short 24 hour time period.  They are doing what they can, anything and everything with what they have, so long as it is together.

I appreciate the ability and privilege to listen to people's experiences and how circumstances, mostly out of their control, have brought them to a certain point.  We so often don't want to think about what we would do in those same moments and yet, it is the essence of who we are and how we project the character of who we aspire to be that comes to the forefront when faced with a dilemma we never saw coming.  There is no black friday, holiday parties, ski vacations, or even plans for new years resolutions.  There is simply family and there is now.  What it requires is patience and faith that a direction will be given in due time, so in the meantime you just get on with something that represents the bond only a parent can feel.  These amazing families that are looking for miracles when modern medicine is short on ideas magnify courage and can live with the bittersweet days where every hour should be as full as possible.  I aspire to be that strong someday.

We did get an answer from the docs as to what was causing Ellie's fevers and overall strange blood counts for the past two weeks.  They often will run a test for one of as many as eight different strands of the flu.  The test is often not thought necessary because it rarely comes back positive.  Not so in this case as we got a positive result for an influenza variation that was finally deemed the culprit of our double ER visit week after thanksgiving.  Thankfully, her fever subsided after being on and off for about a week.  Her croup cough is also gone and her blood counts returned to their nice and suppressed state.  Never thought I'd be so happy to see a white blood cell count of 1K (Normal adults are in the 7K-10K range, chemotherapy purposely keeps it hovering between 1-2K).

Since she is healthier, we got the green light to begin cycle 4 of her Long Term Maintenance (LTM).  As a quick refresher to you chemo newbies, an LTM cycle for her Leukemia protocol is a 3 month process broken into three 1-month patterns.  At the beginning of month 1 for each cycle, she is put to sleep for a quick procedure where she receives a spinal injection (Lumbar Puncture) of methotrexate to keep the bad guys out of her central nervous system where they can possibly regenerate and hide.  She also gets a shot of Vincristine and begins a 5 day course of Steroids (Prednisone).  Following that, the month gets to be much easier as she goes in once a week for a shot of methotrexate through her port and labs to check blood counts.  Month 2 is a complete repeat of Month 1.  For Month 3, the schedule is also the same, but there is no Lumbar Puncture procedure.  On top of all of this, we give her a Mercaptopurine pill every night ("6MP" for short) which has to be taken no less than 90 minutes after she finishes eating for the day.  We are expected to do about 6+ cycles before treatment ends in October of next year.

Due to her being sick last week, she missed her normal procedure day for her LP and had to be moved to Monday of this week with a much later time slot.  The hard part here is that she cannot eat anything before the procedure.  When the time of the procedure goes late into the morning, we are faced with the task of keeping her happy after she wakes at about 6:30am.  NOT EASY.  Thankfully, Polly has become a pro at this and promises with a hospital gift shop toy and jamba juice smoothie en tote after she finishes her chemo provide excellent incentives.  She misses school and she misses playing with her brother, but she absolutely rocks these longer days at the clinic.  Did you ever think a smoothie could taste so good?  :)  We are surviving steroid week right now.  She gets very moody and extremely tired, so we try to keep her happy and allow for plenty of breaks.  The steroid course for this month ends on Friday.  Its funny, we talk about what we are most looking forward to about the holidays, and tonight it was the very reassuring thought that we will get to have a Christmas day this year (unlike last) where she will be NOT be on steroids.  That's pretty cool.

I often think fondly back on an aspect of my time at Carolina while I was in grad school.  My daily routine for the initial summer and fall semester was to drive from our apartment on the outskirts of Raleigh over to Chapel Hill and park in one of the free lots east of campus to catch a bus the rest of the way up the "hill" on Franklin street.  Right about the time I had decided to quit my job and move back east, I had purchased a pair of shoes long sought after but rarely seen in stores I would frequent (ok, I don't frequent stores but that is besides the point).  They were blue Adidas Gazelles.  I loved these shoes, so comfortable and what I wore everyday at school while roaming around Chapel Hill.  So, I'd park my car at the bus stop, put on my ipod mini (I know - how archaic?!) and make a decision on some days to forgo the bus ride so to hoof it up to class.  Why not?  The shoes were comfy!  It was typically a balmy 75-80 degrees and 95% humidity, so not the most enticing conditions for a California grown individual to *want* to hike around in, but it was perhaps one of the best parts of my entire experience.  Life was changing.  It was a leap of faith to find a new career path and a time when Polly and I were figuring out how much our individual paths were meant to be traveled together from now on.  So, I found time to walk....and walk some more with music guiding a reflecting thought process which brought great clarity of purpose to what I was there to do.  I got to where I was going sweat drenched and still tired from the morning.  But see the arrival at that point was a lesson in itself.  Someone was showing me how to create a more meaningful niche able to handle whatever was ahead.  It was God's plan, I know it.  I'm not sure I live up to those expectations for this niche everyday, Lord knows I need to stop worrying, but I still have my shoes to remind me I can start walking in the right direction anytime I want to.  And I have Polly to walk right beside.  I cannot predict but I think together we are strong enough to face any dilemma that may come and, conversely, celebrate like mad the infinite accomplishments that are to come in between.

So, this Christmas season can really be thought of two fold.  We are fully engulfed in cycle 4.  We have the threat of flu bugs and potential side effects of treatment everyday.  Hell, the amount of chemo she gets is accumulating in her body and we may be facing long term physical issues to deal with down the road (which I will gladly do ten times over if you can promise her life will be saved).  But there is also right now.  RIGHT NOW.  I have time to squeeze Ellie's nose and have her squeeze mine back.  I have time to call my mom and dad.  Polly and I have time to take the kids out to dinner and then come home to watch them put their stuffed animals to bed and then SHUSH us for the next 20 minutes lest we wake the poor inanimate little buggers (have to tell you that sometimes I just scream WAKE UP and when Timmy finds this hysterical, we we choose to just deal with loyal, yet sleep deprived "Monkey" and "Cow" companions....I mean you do what you have to do).

I want my kids to know there is no place like HOPE.  And I want them to feel the power of today with faith to take more steps together.

Just Keep Going - Day 521

The more days that go by where things are well, the less I think about posting to the blog and thus you see the gaps of time getting further apart between visits here.  That may be a good thing, I guess, though the help that writing provides me in terms of re-centering focus from time to time is invaluable.  It is a good thing to put work down once in a while and just write.  As of late, we've been having fun and trying to achieve a niche with work, pre-school, and family time where the balance of all three brings needed stability.  So many things going on at school for me (my 15th varsity soccer season now underway), the kid's social calendar is growing which is such a wonderful sight to see, and Polly is working so hard with her practice as time between doctors visits and preschool commitments permit.  I can't say we've had an average fall season this year because I am not quite sure what average would be.  I don't think we do average, honestly.  There are a ton of things to be thankful for going on in our own backyard, so to speak, that life is never dull.  Certainly Ellie's continued good health and the blessings we count every time they interact with Polly's parents and my parents are brilliant reminders of HOPE manifested before our very eyes.  But a quick peek every now and again out of the front window, in the form of a conversation or update on Facebook or doctor's visit that hangs on blood results, reminds me of the battle still raging for us and so many of our heartfelt cancer world friends.  Sometimes it feels like the annoyance of a small rock in your shoe and other times it might as well be a hot poker to the eye.  Regardless, the thought provoking reminders do not go away.  Experiences, voices, desires, and day to day activities change so often with 3 year olds anyways that you just have to smile, try not to question much, and just keep going.

For the most part, Ellie has been handling her weekly chemo quite well.  Her blood tests never get drawn without a little nervousness from Polly and I but we see good news 9 times out of 10.  The danger this time of year is the cold season.  We have been very nervous about seeing how her increased activity through pre-school and various other events would match up with her still suppressed immune system.  I would say up until this past week everything has gone near perfect.  However, right after Thanksgiving she picked up a cold and runny nose.  Strange too because Timmy always is the first one to get sick.  This time is was reversed and while it was fairly short lived in him, hers grew into a nasty cough by the end of the long weekend.  Early Monday morning we were woken up around 5am by her calling for us in between frantic gasps for air.  It was the first OH SHIT moment we've had since last winter and the kind that just brings back so many of those fears you spend months finding a way to ignore or at least put into a manageable area where you can have a go at them when good n' ready.

We hadn't seen many signs of the severity of her cough that evening and so this being, if I remember correctly, the third time during the last year where we have gone to the ER unexpectedly in the middle of the night after being blind sided by something getting out of control very quickly.  You just can never be completely at peace....especially when the craving to be so is supremely prevalent during a streak of good days over many months.  Cue the hot poker.  

As Polly was spinning like a whirlwind trying to get things together to go out the door, I had Ellie in the bathroom with the shower on full blast to try to get as much steam into her as possible.  I'm thinking this is going to be a week long hospital stay at least and dammit why didn't we see this coming?????  She sat on the counter top looking at me, her chest still getting real big....and REMARKABLY she was calm.  Her eyes never left me the whole time we were in there which was strange because of how she and her brother move from activity to activity so fast that you cannot really say lengthy attention span is in their daily routine.  Her attention was focused directly on me and I am just trying not to let her see me scared.  Though her sentences were interrupted with breaths, she wanted to know if I was going to be here when she got home and if she could go out to breakfast after seeing the doctor.  So, my mind is going 1000 miles a minute trying to figure out how she is talking while breathing this terrible noise from whatever ailment within and now I am finding myself answering questions about breakfast.  What?!   This girl is amazing.  I hate that I am admitting this and probably wouldn't be doing so in any other forum other than my own words in this blog so please forgive me, but I have to be true to my thought process because the things you don't want to think about....EVER....exist. Heck, they are amplified at 5am because you are tired and stunned.  What if she goes to the hospital and doesn't come home?  I refuse to let that thought go any further because we haven't spent the last several months building strength along with the power of prayer, Faith, and immense HOPE to be our guides when adversity strikes. But, the emotion can get the best of you for a short while sometimes.  Ellie isn't old enough to know how she is doing it or why, but she gets it.

We talk in the coaching world all the time about dealing with pressure packed moments where you are tested  to your limit.  We use words like Poise and Discipline with a whole lot of attention to detail during the execution of a game plan or rather putting your best foot forward when its needed and knowing exactly what needs to be done.  And yet here was a situation where I was struggling to comprehend as quickly as my 3 year old daughter who was already seeing herself walk out of the hospital straight to the nearest Peet's Coffee shop for a muffin and milk.  It is a little ironic she is the one who was calm here, but in hindsight a sign of reassurance only she was capable of.  She gets this and.....she's GOT THIS.

Polly took her to the ER and called about a half hour later with much relieving news that things were OK.  Thankfully her lungs were clear....don't know how that was possible given the morning we had, but we'll take it.  Some possible Divine intervention at work right there.   The doctor called it a case of Croup, so we got some breathing treatment meds to use with Timmy's nebulizer (oh yes, twins share everything) and off she went to come home (following the required stop for food of course).  No hospital stay, no major complications this time as feared.  Disaster averted.  Thanks be to God.

There are battles being fought against leukemic blasts, chemotherapy side effects, flu viruses that are magnified from a weakened immune system, and the potential long term damage the toxic chemo drugs are doing to her body in general.  Even though we hadn't seen this sort of worry in many months, the few hours on Monday morning were enough of a reminder as to the magnitude of this world.  Parts of this whole thing are absolute hell.  But in the steam filled bathroom sitting on my counter top was Winston Churchill in red and pink 3T horsey jammies saying loud and clear, "If you are going through hell, keep going."  Ellie handles things with a grace all her own.

She is still fighting the cold right now and goes in for chemo tomorrow, so we are expecting her counts to have gone neutropenic (which will mean a hold on her 6MP for a week), but she is feeling a little better and we will continue to monitor with our thermometer in hand.  Now that we've gotten the shock to our system out of the way, we are ready for anything, trust me.  The ups and downs of maintenance therapy are still so much more manageable than anything we went through a year ago at this time (yes, despite the rare few hours of panic starting at 5am).  The facts are, she is nearly 16 months cancer free now and overall doing very well.  Again, Thanks be to God.

As always there is a Faith component to this that surfaces so often right after moments of distress.  We are praying and hoping so much for little Madeline's battle to keep on an upward trend only two months removed from a bone marrow transplant (BMT) and NEVER far from our thoughts are Justin Solomon and his incredible Mom, Jennifer, who are tackling complication after complication from his own BMT.  If they can do this, we can do this too.  Faith binds us together and cements a show of strength unparalleled in anything I have ever experienced prior.  Faith, in the form Ellie's determined eyes at 5am, is what we have and its ultimately all we need.  Just have to keep reminding myself of that and move on.  We're gonna beat this thing.....mark my word.

Fly - Day 482

We've used this analogy before, I think, to describe the feeling of coming off a weekend heading into the next week feels like stepping onto the Treadmill where the stop button cannot be pressed until about 3pm the next Friday.  With Ellie only going to LPCH once a week for a couple hours, the kids now in a regular pre-school routine, and our lives being about as close to normal (right now) as we can probably get, the weekly grind has a definitive Treadmill feel to it.  And so to combat the feeling of go-go-go, I find it useful to immerse myself in music after my work for the night is done, slow down a bit, and try to center on my wife and my kids.

I've been on a piano music kick recently and found a couple guys who tickle the ivories in a unique way provide a great atmosphere to put the brakes on during the week.  One song I have been particularly fond of has been "Fly" by Ludovico Einaudi (Ignore the video in this clip, just feel the music).  I parallel it with something out of a movie when someone sits in a place where the scenery in front is moving by so quickly, it is as if the fast forward button is being pushed.  Yet, in this moment they are completely still, eyes scanning one step behind the constant change in scenery, searching for a way to take it all in, and perhaps trying to make sense of what is important.  I'm not sure it is anything more than a good chance to wind down from grading papers and working on prep for the next meeting (there seem to be a lot of meetings these days).  But, it is a time that seems to bring more clarity.  I can ask the pressing questions to at least hear what thoughts may come and do so without fear of the answers that may follow.  It's a time to sort through things without decisions getting in the way.  A time I have felt the presence of God more and more.  In the process of flying along, asking questions in a clear space seemingly brings peace.

Ellie has this uncanny ability to laugh.  She laughs at things she sees and again at the suggestion of funny ideas.  She has even started to synthesize ideas of her own that, in the right context, are offered with a huge grin.  We can tell when she is being a little goofy too because she has a fake laugh of sorts she pushes out there when she is trying to add some life to whatever is going on.  It's remarkable really.  Whatever room she enters into, it lights up.  A year ago this month, we had just finally put some distance between us and our fourth in-patient hospital stay since diagnosis.  She was scary skinny leading up to Halloween and losing more hair everyday.  Back to present day, she has a radiant color to her, moves/climbs/runs almost as well as her brother, and has seen no adverse side effects other than minor steroid rages in the last four months.  We have about 365 days of treatment left to go.  One step at a time.

The harsh reality of how fast things can change is what eats at me when time does slow down.  The cold season is starting to show itself in the Bay Area and after a week of awesome blood counts 10 days ago, she fell into neutropenic ranges on the ANC front last Thursday for the first time since May.  This always has the potential to open a Pandora's box of possibilities and return us to a year ago all over again which is why it is so damn scary.  Neutropenic means a simple cold could be a hospital stay, it could be a fast acting virus, or it could be cancer coming back.  Polly does the drive to LPCH every Thursday morning for Ellie's weekly blood tests, while I am starting my teaching day at school waiting for the text of blood counts....all the while thinking we will receive what should be routine results but always with a uneasy feeling somewhere with the small chance they won't be.  Every Thursday - over and over again.  The traffic on Sand Hill Rd heading to LPCH might as well be flying by us getting on with their normal routine while we methodically walk to the front door, stand there, and just hope.  It can be easy some weeks and madness others, so finding time to clarify thoughts and regroup on a weekly (or sometimes nightly) is a must.

A couple weeks ago, Polly took the kids down to do some apple picking in Los Gatos.  Believe me, the ease in entertaining a 3 year old with simple things like this never ceases to amaze.  Especially if you use the overly excited voice to prep them for the outing.  For instance the line "Hey GUYS - Let's take out the GARBAGE!!!!" being follow up by a "OK YEAHHH!!!" never gets old as they go literally racing to find their shoes.  I've used the phrase "Eyes on the Prize" quite a bit to describe our motivation toward just keeping the forward momentum going.  So, after 100 pictures have been snapped at a fun event like the apple picking, there is always one that shows up and immediately speaks a thousand unspoken words.  This photo, to me, shows beauty, strength, potential and grace:

I owe a blog post to Timmy very soon and I promise to write one before the Holidays get here.  His knowledge of what is going on seems to be growing and the air that goes out of the room for him when Ellie isn't there is tough to see.  He cries most Thursdays now when he is left alone with our nanny as Ellie leaves with Polly and I out the door.  He seems to have the lesser security of the two when it comes to social situations from time to time but feels so much comfort when he knows she is there for him.  Their discussion last night while Polly was at work and I was cleaning up the kitchen?  Whether they should take Hwy 101 or 280 and when to get gas on the way to San Francisco while pushing their strollers.  Go figure.  I don't recall when Polly and I had this discussion in which they are mimicking  but MAN the details that were forthcoming from this conversation!  Timmy likes to lead the way in these discussions but is always asking for her approval and when she balks at a suggestion, he will often cave.  So, obviously Hwy 280 won out (smart twins) but Ellie made sure that he understood there had to be a stop at Gigi's (Grandma's) house on the way there.  Collaborative efforts, joint decisions, and plans being made.  Wow.  I sit back and marvel how far they have come because they have each other.

I think it is both helpful to me and necessary to ask the hard questions.  We've watched over facebook the past couple of months the difficult story of a 13 year old boy named Lane in Kentucky with Rhabdomyosarcoma (soft muscle cancer - very rare) unfold.  When he relapsed for the third time, his facebook site exploded with "Likes" to the order of 394,000.  He was on hospice care for over a month before passing away last Wednesday.  I was struck a great deal by the sheer Grace in which his mom was handling her thoughts as she posted daily leading up to this week.  How will we face adversity when an inevitability presents itself?  While there is no way to prepare or some guide to tell you how to do it, Lane's mom seemingly was touched by God to bring strength to her family.  Amongst the chaos, there was a "calm" present as evident with how she described sitting by Lane's side everyday.  So, while we work all week, tirelessly educate ourselves where possible for tomorrow, and seek out activities for fun during the weekly hustle we put ourselves through....could it be that the greatest connections in our life in terms of purpose and meaning occur at a stand still while sitting right beside all that is important to us in the world?  How do we best fulfill that purpose in the only tense that matters as of right now - the present?  I'm still trying to figure that out, but my focus stays firmly affixed on the "Now" as much as humanly possible watching Ellie laugh as often as possible.  I do remind myself every week that whatever comes with the blood tests will be dealt with in due time.  For now, it is simply Sunday night.

Our first step off the treadmill each week always comes back to family.  Polly drives this notion forward and keeps us all on the right path.  I know I married the right person because I will follow her anywhere.  Finding answers together is part of this whole thing and I love that our ideals of what we want match up so well despite the very difficult setbacks that have come fiercely toward us in the last 15 months.  I hope you will say a prayer for Lane's family this week.  We also pray for Logan's family, Mia's family, Sy's family, and of course for strength for our friends Justin and his mom Jenn back in North Carolina who continue to fight with everything they have.  We are so blessed to be in a more normal routine right now despite the worries that remain and will always be there for quite sometime.  I ask God for the perseverance and balance required to maintain a healthy outlook and the continuation of our great conversations while I fly along (thanks to Mr Einaudi) for a few minutes before bed on many nights.  Until this past year, I never fully appreciated nor understood how much I needed them.

Pinkalicious - Day 477

As you all know, this blog is really Jeff’s work, however Jeff has been quite busy lately so I thought  I'd share a funny story from the weekend and a quick update on how things are going. 

 

Ellie continues to march through maintenance like a super star.  Her counts have been fluctuating a bit, but so far on the 125% dose of chemo are staying within therapeutic range.  Last week she had her monthly back poke of chemo and thankfully tonight we gave her the last dose of steroids for the month.  She is much more aware now of what's going on compared to a year ago (or at least she vocalizes it more).  Each week she asks if she is going to the "sleeping room" or just regular chemo, and for her the highlight of going to the "sleeping room" is that she gets to leave in a wheelchair that Mommy pushes. Thankfully despite all of the construction at LPCH, they still let me be with her when she goes to sleep and come back in before she wakes up.  We are so lucky to have so many wonderful "friends" (nurses) we see on a weekly basis at LPCH - they truly make our lives so much easier.

 

Timmy also had to have a procedure last week.  He had his adenoids removed and a new set of ear tubes placed.  Hopefully this will set him up for an uneventful winter cold season.  Like his sister, he continues to amaze Jeff and I and was adamant about going to school the day after his adenoid removal and was full of energy.   

Pinkalicious has been one of our favorite nighttime story books since Ellie received a pair of hand me down pinkalicious jammies from a friend a little while back. Both kids know the story by heart and like to take turns “reading” it to me. For those of you who don’t know the story, Pinkalicious is a little girl who makes pink cupcakes with her mom and then eats so many she turns pink and has to eat green food to turn back to normal. So, a while back I had promised the kids we would make pinkalicious and of course bluealicious (for Timmy) cupcakes. We made the cupcakes over the weekend and I let the kids frost them by themselves, i.e. they ate pink and blue cream cheese frosting by the spoonful while I tried to spread some on each cupcake.  After dinner that night, I offered each a cupcake for dessert, but both only took one bite and asked me to save the rest for the morning.  Ellie isn’t that into sweets so this wasn’t surprising, but I don’t think I have ever seen Timmy turn down something sweet.  I didn’t think much about it and figured he had had his fill on the frosting. Sunday morning, they woke up calling me and when I walked into their room and turned the light on Timmy exclaimed “Ellie you are not pink and I’m not blue!” and they both squealed with delight…who knew 3 year olds take books so seriously!!

 

We are so thankful to be where we are 477 days later.  This time last year we were preparing to start Ellie's 4 mandatory hospital stays for high dose chemo.  Having both kids get to wake up in their room together is such a blessing.  Thank you for the continued prayers and support throughout this journey.

xoxo
Polly and Jeff