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.