Simplicity - Day 617

Before I started teaching, I worked for a small company here in the Bay Area doing pharmaceutical research and development.  We would initiate methods in the lab, generate more data than I care to remember, and then try to make sense of it all with endless meetings.  These meetings would often go in circles and we'd be tasked with more repetitions to either validate the method or confirm results.  In many cases, answers never came and even with the most collaborative brain power in the room we would struggle with answering what comes next.  All part of the research fun, I suppose.  On one afternoon, we were joined by our company's chairman of the board, who is as brilliant of a scientist as he is businessman.  I have absolutely no recollection of what particular facet of our work we were discussing that day, but it was in large part a very likely dead end after several long hours of multiple people's effort.  The question on everyone's mind was finally posed after the problem had been presented and descriptions of failed solutions were described with painstaking detail.  It felt like I was bringing home that first ever C- grade of my life all over again during Christmas from my first sophomore organic chemistry class (Yes, I can laugh about that now).  There is a feeling that the transparency exposing the lack of results is so clear that you don't even need to speak a word for it to be noticed.  And so with every degree of hesitancy possible, we sat there and waited for the Big Boss to speak.  

He wasn't mad.  He wasn't concerned.  Remarkably, he started commending the group for the work done to date.  (What?)  The biggest asset we brought to the greater project, he explained, was the work rate.  IN all of about two sentences, he summed up his thoughts and then adjourned the meeting.  Though I do not recall the exact words it was something like this, "I believe the work you have done has given us some valuable information.  Seems to be we can start anew by just adding a little soap to the device.  See how that works and let me know".  (WHAT?) We had been going in circles for days and all we needed to do was add soap????  Ha!  I still marvel at the simplicity of his message.  Give it a try, you have nothing to lose.  Why not?  Sometimes we waste so much time in details when the easy choice is potentially that simple.  Soap.  SOAP!  And to tell you the truth, I couldn't tell you if the soap angle helped since this was nearly 10 years ago.  I don't think that really matters at this point.  What does matter is the effectiveness of brilliant leadership that communicated a direction, offered motivation, and gave assurance that seemingly futile prior efforts were anything but.  All in a handful of sentences with a simple determined look which never wavered in purpose.  We all seek the end result, but the simple messages heard along the way have profound effects far beyond what we could have comprehended on the day they were first heard.  Several simple messages have equated to a mountain of strength for us in this unrelenting childhood cancer world.  As a result, I consider myself very fortunate.

So, some good news.  Ellie has now been in Long Term Maintenance for a full year and has ONLY 8 more months to go with her weekly chemo sessions.  Her blood counts have been hovering around a suppressed but heart warming "normal" state for a while now.  She caught a bad cold this past month as we expected would happen once the flu season kicked into high gear (we all actually got some form or another of it).  I am not afraid to tell you that our family arsenal of humidifiers, nebulizers, medicines, and homemade chicken soup for the soul may cause our electricity bill to go up, but the cold bug was effectively beaten this time.  Of course there is worry about how much any given virus might take hold (we would be silly not to prepare for various scenarios) but Polly has become so in tune with anticipating how these things affect Ellie that the process to fight it off has become an efficient one and quite simple.  I tell God often enough in my occasional swing through the school chapel before my work day begins that I can handle the snotty noses pretty well if he can keep those CBC panels clear and free.  The partnership is working thus far and I will spend a lifetime giving thanks for it.  He and I are good like that.

We are also well into the wonderful period of the terrible threes where key choices during the day can walk the fine line of gleeful bliss or temper tantrums heard round the world.  Just yesterday, I decided to move the stroller from the front porch to the car.  Apparently, the mere thought of such a dastardly deed was enough to send both kids into hysterics.  The tantrums get good too....foot stomping which leads to each child throwing themselves on the floor as if to practice future WWE moves.  The dog doesn't even try to move anymore with any semblance of shock.  Rather, we just weather the storm and five minutes later laughter abounds because one twin makes a glitter pen explode while the other provides assurance that it will be spread to every corner of the living room (I will admit to having anger toward the inventor of said pens).  Year threes is also bringing about pretty amazing accomplishments.  Both kids can get around on scooters with ease, draw pictures that look like something, and argue with us about what they want to wear and then put it on themselves so Polly and I can absolve ourselves of any connection to how they dress.  After being worried about Ellie's motor skill development from the multiple Vincristine injections, she is able to keep up with Timmy on the park jungle gym, climbing everything in sight.  The best sight is watching them play for hours on end with each other coming up with these elaborate pretend schemes where they work together to get where they need to go.  This past weekend when Polly was away and I was tasked with entertaining for 48 hours, these two made it simple.  They spent two hours without interruption (ok, except for necessary snacks) driving their dolls to various activities in the living room, including a stop at Camp Okizu and several preschool "circle times" all before making sure their babies were put to sleep in time for a proper nap.  It is a friendship I could not have imagined possible prior to parenthood because you have to witness it first hand to really understand.  Twins are quite the blessing.  They provide tantrums in stereo, but they also know their first connection in this world (and perhaps their strongest) is to each other.  I don't even want to think about where we would be against Leukemia without it.

Our last trip as a family outside of the Bay Area was late May of 2011, about a month before Ellie was diagnosed.  Now a couple months shy of two years, we have finally been given clearance by Ellie's doc to take her on a quick vacation more than 2 hours away from Stanford.  So, very soon we will be heading to snow for a couple days in the Sierras.  I don't care how long it takes us to drive in get-away traffic that heads East around here every evening.  It just doesn't matter in this case.  We're gonna explore some new territory and give them both a few new reasons to smile. We likely won't do more than eat, sleep, and sled.  And we'll still have to match a dinner schedule to her chemo schedule, but again....minor details.  It represents another simple baby step forward.

On February 15th, Polly and I attended the memorial service for student/soccer player I had the pleasure of teaching/coaching a few years back which I mentioned in my last post.  He passed after a two year battle with Ewings Sarcoma.  A battle that was initially won over a year ago.....and then reinstated this past December with a terminal prognosis.  The Pastor's story about his meeting with Kurtis at the hospital some number of days before he passed was nothing short of remarkable.  It was a lesson for us and many others present that day.  Kurtis made a choice to end his treatment and walk into God's arms on his own terms.  He faced an ultimate fear head on and found clarity of purpose.  I can only speculate, but perhaps this was his simple idea of accepting the comfort of an eternal peace.  The Pastor provided a message through Kurtis' selfless sacrifice that peace is possible and, in this case, achieved with clear eyes and a full heart.  Kurtis is a hero....I won't forget that.

I think we can put a proper perspective on many things but often spend too much time spinning our wheels with the complexities of what it all may mean.  With solutions few and far between for enduring battles, there must be a way to find peace with the surrounding simplicities in our direct line of sight.  Who would have ever thought of SOAP at that moment?  I know I will forever seek the ace in the hole that provides my daughter with a cure, but day to day....things are much simpler.  There is purpose in watching, in listening, and in experiencing.  I am working on this.  Some of it can be as easy as putting my phone away more often and some of it may just be slowing down a whole lot more on the work front.  Regardless, it is quite apparent I am here to bear witness to the simple joys seen through my kids' lives.  To this end, I know peace is eventually going to be the only choice to be had.  We're gonna beat this thing.  Thanks, Kurtis.

Psalm 121

I lift up my eyes to the mountains

where does my help come from?

My help comes from the Lord,

the maker of heaven and earth

He will not let your foot slip

He who watches over you will not slumber;

indeed, he who watches over Israel

will neither slumber nor sleep.

The Lord watches over you,

the Lord is your shade at your right hand;

the sun will not harm you by day,

nor the moon by night.

The Lord will keep you from all harm,

He will watch over your life;

The Lord will watch over your coming and going

both now and forevermore.

June 19, 2009 - 15 days old

My favorite picture during that oh, so sleep deprived first month of the Twins' lives

Back when life was simple, right?

5 Pony Tails - Day 587

Finally some time to sit down and write again.  We've had some good weeks and some great times since the holidays wrapped up a little over a month ago.  There have been some inspiring little victories as well.  The kids are back with pre-school three days a week, we have only had to fight off minor colds, both kids are jumping off the deep end of the pool and swimming to the ladder on their own, Ellie now writes her own name (!!), Timmy breaks out in random song with memorized lyrics I don't even know and there has been plenty of time for family in between.  The furious pace of the soccer season for me in January coupled with all that goes into a full load of classes doesn't leave much down time at all and I find myself dragging into weekends.  But I am continually reminded by random little things I see everywhere  I go, be it work or home, that the 3 year old smiles I see every morning (now running into our room when their programmed clock turns "green" to signify a [semi] acceptable get out of bed time) are survivors of the harsh and often gut wrenching chemo phases of a year ago.  Wiping the sleep from my eyes once pounced on at absolutely not a second beyond 6:30am, there is always enough clarity to understand the daily routine we have the privilege to go through now is to be enjoyed not just endured.  We are very blessed in this regard and we are very lucky.  January has been as it should be.

I don't ever want to go back to that place of last year.  I give thanks daily for the progress she has made and hope to Dear God we are always moving forward.  HOPE to DEAR GOD.  And so herein lies the cruel twist that makes this a search for a resolution with a constant theme sung in a minor key.  It is a tug of war between impatience with a large dose of helplessness versus the success we have on many days to remain in the moment where the worries we cannot control seem as distant as our lives pre-diagnosis do.  Ellie's maturing mind is comprehending more and more about what is going on and we are beginning to tackle the normal growth challenges of a school aged child at the same time.  As she thrives so wonderfully right now, the things we continually hope for seem real, they seem tangible, and they are there to be had!!!  I want her dreams of the future to be secure and I want to rest peacefully with them myself.  But with all of the weekly hints I see meant to celebrate strength derived from every second she has been in remission since July 2011, I will also inevitably witness the unexpected reminder that brings to my knees, yanking us back in time, where cancer regains control.  Sometimes I feel like I need to prepare something to have in my back pocket because if it came to be, we would have to explain it to her this time around, but in a lifestyle that demands a constant present tense I cannot allow myself to go down that road yet.  So, I end up going to sleep on some nights wrestling with the "what ifs" and trying to be okay with an uncertain future.  It can be very tough.

I've said it many times before, but the parent world within childhood cancer has been one of the most incredible experiences I have been a part of my entire life.  The strength in numbers can often be a small curse though as shared ups and downs are constant and relentless.  The extra burden to bear with treatment, physical side effects, school issues, and delicate handling of germs brings us all together with very deep mutual respect.  And so when someone loses their battle, regardless of how close we actually were, I feel there is no other choice but to face an ultimate fear by honoring their battle with the way we fight our own.  It is a tearful journey on many days, there is no other way to describe it.  We do keep going though.  We have to.

The LPCH family lost a little warrior a few weeks back in little "Sy" who suffered from Liver cancer.  He was being treated in the same place Ellie goes each week.  I had come to know about his fight less than a year ago about the time he was deemed terminal.  Polly and I sent a note to his parents expressing our prayers of support and we had the privilege of following his final months which were spent doing so many things he really enjoyed, particularly every second possible with family.  The pictures they posted told a remarkable story of character.  Not the least of which was Sy posing with a starting linebacker for the San Francisco 49ers who made a special trip to visit Sy at his house some months ago.  This upcoming weekend, the 49ers play for the 2013 Super Bowl and I can only imagine the excitement of an 11 year old boy watching from above his favorite team, now cancer free, pain free, and eternally at peace.  Knowing Sy's mom and dad are home right now struggling to find a way through enormous grief is the harshest part of this unique parental world.

I also found out this past week a former student/player of mine passed after a  two year battle with Ewings Sarcoma.  Not to pile on in one single blog post, but it bears mentioning because I've always thought you become aware of things for a reason.  My thoughts this entire day have been on him and the incredible void now left for his poor mom.  So much sadness and so little understanding for us all of the bigger picture (if there is one here....because I have to admit sometimes I wonder.  I know better but I do wonder).  I was told of his courageous words in his final days asking for help to take care of his mom after him and trying to find peace the best way he knew how.  In the time I knew him, he was always very passionate about his friends and working as hard as he could at the things he enjoyed doing.  I don't care how good you are a something, if you work at it with everything you've got, you deserve respect and you deserve results....and both of those things will eventually come.  From what I understand, he was in control of the things he wanted to the very end.  That gets my ultimate respect.

I won't forget the lessons of grace under the ultimate duress both boys have now taught me.  RIP sweet Sy and my good man, Kurtis.  I will continue to struggle with why they were not allowed to keep fighting with us....because lord knows they would have gladly kept going as tt isn't right and it's not fair.  Thank you for making me a better Dad for one of your fellow cancer warriors.  I promise I will make you both proud.

On a different note, Ellie's hair has really come back strong.  Strong and curly!  Polly and I definitely like the post chemo curly version better than the pre-diagnosis straight version.  She fondly combs it when looking in the mirror and tells us she thinks it is getting "really" long (below her ears now).  Just after new years, we were able to finally get a long enough tuft into a small pony tail and the innocent smile on her face, something she has never lost despite the multitude of things she has been through, was there bright as ever.  So, when pre-school announced a couple weeks ago that this past Wednesday would be "Crazy Hair Day", Ellie lit up with a giddy laugh and announced to us all she would be wearing FIVE PONY TAILS that day.  Let's face it, that's just crazy.  Leading up to the day, whenever she would remind us of the event coming up as well as use complete clarity in demanding the number of pony tails reach the five count (no more, no less), I'd get the biggest kick out of her small rocking motion up to her tip toes for a brief moment when she'd make her exclamations.  This was a big deal and she knew it.

3 of the 5 Ponytails (other 2 in back)

I found this to be nothing short of a triumph of the human spirit.  In that moment, she was whole and she was perfect.  This was a little victory that spoke thunderous volumes of what may and should be down the road for her.  I look forward to that so badly that impatience gets the best of me some days....like today  So, I am going to keep looking at where we've been, now almost a full year removed from the harshest times, and continue to make the most of a single day at work, on the field, or at home in large part because we all must carry on for those who have sacrificed before us and can no longer do so.  Ellie has been on this kick lately of asking Polly, completely unprovoked, before bedtime, "Mommy, what we going to do tomorrow?"  With every answer we give her comes a promise of something to look forward to which she then embraces without reservation.  She's suddenly got this sense of "future" in her sight every night before bed and that gives me pause.  I can only conclude that from every harsh reality we get word of, there seems to be five sprouts of hope popping up in its place either immediately before or after....certainly not just a coincidence.  Amazing how that works and if you think about it from this perspective, the odds are and will be forever in our favor.

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.