Faith - Day 85

Faith is helping us get to work on the things we care about everyday....and do so with purpose.  Faith is putting a smile on Ellie's face today and making sure she laughs out loud every time Timmy plays Duck-Duck-Goose with just the two of them.  Faith will see her march into LPCH tomorrow like a brave soldier, get her shots, and walk out forgetting almost instantly what just happened.  Faith is holding us together when we crave normalcy.  And Faith is what we have when we see the future of these two doing wonderful things to make their mark on the world.  Faith - Intangible, sometimes illogical, but essential.

Polly and I were invited by a colleague to be guest Bartenders at her Team in Training Fundraiser for the Leukemia and Lymphoma Society this Friday night at the Carlos Club in San Carlos from 8-9:30pm.  She will be running a marathon soon having raised many thousands of dollars in sponsors.  All proceeds from her efforts and from funds raised this Friday go directly to LLS.  So, come on out, join us for a beverage, and support Ellie and her amazing cancer Warrior friends.

Here is a poem that spoke to me tonight:

To have faith is to defy logic.

It takes faith to think positively.

It takes faith to believe that there is a loving God who cares deeply about our pain.

To believe in life, the universe, or yourself after numerous failures is to have courage.

Faith is an act of courage.

It is choosing to get up in the morning and face our fears and believe that God will help us.

Faith is choosing to believe that even though we may have failed one hundred times before,

we can succeed the next time.

~Anonymous

Ellie is my Hero.

Ellie Get Wellie - Day 83

A quick update - Ellie had labs today and needed a blood transfusion ahead of her scheduled 7th week of Consolidation chemo this Thursday.  Polly and she hung out at LPCH for about 5.5 hours this afternoon for that to take place.  El handled it like a champ without a single tear.  On Thursday she'll get two shots of PEG-Aspariginaise and one shot of the ever not-so-nice Vincristine.  Following Thursday she'll be one additonal shot of Vincristine away from finishing Consolidation.  She remains in very good spirits coming off the weekend despite low blood counts, so we just pray every night that continues.

The other thing I wanted to mention is that our absolutely wonderful friend from the Bruin family, Katie, is organizing an event on Ellie's behalf in a few weeks in partnership with the The Sitting Tree.  Polly and I have really just been very lucky, fortunate, and thankful observers of all that Katie has done for this.  The flyer is below in case you are interested.  We are forever in debt to our friends for their support.  Katie - HUGE hug from El, T, Polly and I.

Support - Day 81

I was out picking up a few things today while the kids napped and happened to stop by a small store for literally about 5 minutes (get in & get OUT. yes, that's how I shop).  I found exactly what I wanted within 30 seconds, immediately turned to go to the front and then thought I was very lucky to be walking up to pay right when the second cashier open up and took me first.  With my in/out time record surely to be broken with this gem of a shopping experience and my thinking that Costco could learn a thing or two about this particular business model, my positive momentum came to a screeching halt.  The computer processing debit/credit cards decided to come crashing down.  And there we were - me, cashier, and a blank screen.  Foiled, yes, but a reason for the occurrence presented itself.  While we began to wait for "Doug" the manager to come fix the problem, the cashier politely asked what the orange ribbon on my shirt was for.  Now I know I should expect such questions with the outward display and I do.  But it always gives me pause for a second before I feel like I am about to drop a bomb (of bad news) on a random stranger.  There have certainly been a few times prior to this where I am the one consoling them (which is fine, I've had nearly three months to process, wrestle with emotions, and subsequently help Ellie kick the sh*t out of cancer....they have had about 2 seconds).  This cashier was a little different.  When she heard my reply, she quietly said "Oh" and then had to answer one of Doug's questions being yelled in her direction from his office.  She fiddled with the computer a few more seconds (I believe to reboot it), we exchanged some sarcastic comments about the overall effectiveness of computers in our lives, and after a time long enough where I thought the subject had been permanently changed she looked at me and said, "Two kids in my family have beaten cancer, we will pray for your daughter in all of our circles".  Wow.  We talked for about 90 more seconds total but I gathered from her how incredibly proud she was of her 4 yr old niece for beating cancer and surviving some very rough times.  Her smile offered reassurance and her voice that responded instantly conveyed experience and support.  The offerings of support from people I have never met (until now) has been one of the most powerful forces I have ever felt.  No matter where you go, its like everyone (EVERYONE!) is rooting for the Home team.  Ellie's team.  A few posts ago, I mentioned how these daily moments occur on occasion where I get stopped in my tracks for a few seconds....this was definitely one of them.  I honestly think there is a reason you bump into anyone.

We have had a really great week.  T & E's laughter and cheerful play has filled the house.  Last weekend, we were able to take them both to a friend's birthday party and enjoy being around other kids for a while.  We've learned these types of weekends are never guaranteed so we try to make the most of them even if it means disrupting a nap schedule here or there.  Ellie had her chemo day at the hospital clinic on Thursday where they did labs and sent us home with her last round of four Cytarabine shots.  Her blood counts have begun to fall again and she is now below the 500 ANC line (neutropenic).  So, we are back to relative home confinement.  It is a painful reminder to know we have to deny her visits to the park or trips to other parties (quite honestly, it sometimes brings up remnants of the always lingering somewhere thought "Why Us?") but I know 15 years from now when she is thriving, these 2.5 years will seem relatively short.  Deep down, we know that.  She'll have labs again Monday to see if she needs a transfusion ahead of her next treatments on Thursday.  Polly has gotten so good at giving her the Cytarabine shots.  Being that she is 2 years and a few months old now, she has associated the idea of the shot with a lot of pain, so these are not fun.  LPCH puts in a small temporary catheter type device in her arm so we do not actually have to stick her with a needle.  But, since the injection goes under the skin into her SUB-Q space, it still is pretty painful.  She has her last shot tomorrow afternoon and then she is done with those until the second half of the Delayed Intensification phase (about 3-4 months from now).  All things considered, she is very stoic with these shots and all is forgiven a moment later when the epic choice of Elmo vs Cookie Monster Band-Aid is presented to her. (Well, what would YOU choose?!)  Her nightly dose of the immuno-suppressant "6-MP" also ends this week on Wednesday, so if we can make through this week without catching any colds (knocking, no BASHING on wood right now), her blood counts should start to come back up again as we close out Consolidation on Sept 29th.

I'm sure you are aware I work with teenagers 7-8 hours a day (10-12 when its soccer season).  One of the greatest things about teaching is that no two days at the office, so to speak, are ever the same.  It, of course, does not come without its trying days and sometimes the "a-ha" moments do not present themselves until well after graduation when my colleagues are no where in sight.  The remarkable thing about working with high school students though is their seemingly never ending ability to surprise you with some small tidbit of forward progress at an unsuspecting moment.  It is perhaps these surprises, or little daily victories, that symbolize a growing professional partnership to support one another taking on the world together.  I appreciate that very much and I am extremely thankful to have the opportunity to work where I do.  This past week, it was possibly I who learned the most out of the 1000+ students, faculty and staff that walk the halls every day.  The senior class of 2012 at Serra touched our hearts and for this, Polly and I are forever grateful.  The Serra students are pretty amazing.  We want to say THANK YOU many times over.  If you missed it, I'll let you read for yourself - click HERE.

I want to offer prayers of thanksgiving for our friends, parents of Lily, who is also fighting the beautiful fight with cancer.  She received great news this week of a milestone marking recent treatment success.  We think about you guys everyday and are walking this journey as firmly by your side as humanly possible.  My quote in the article linked above ends with words I've read Lily's mom write many times over and all credit goes to her for these words which have given us strength and inspiration - "Please pray for miracles....because they do happen"  Darn right they do!  Support comes in so many forms through family, friends, fellow cancer warriors, and sometimes most wonderfully from strangers you talk to for only 90 seconds.  It helps top off the tank after great weeks like this with uneasy anticipation of any potential near future troubles.  One of the Sisters in the Serra community mentioned to me yesterday about the many international prayer circles that have Ellie's name in them regularly right now.  I heard over email this week from a handful of different students who have all graduated at various times in the last three years and were writing to offer support.  And I may need to nudge my mom to make a few more orange ribbons because after 200+ that have gone out, I currently have none left in my possession other than the now slightly frayed one I wear everyday.  Day 81 ends with the power of prayer leading the way.  This is all nothing short of amazing....and we sleep peacefully tonight because of it.  Thank you for that.

Always Forward - Day 72

One of Father Serra's many famous quotes so remarkably embodies his self sacrifice and persevering perspective on the often overwhelming journey that faced him and those that followed him.

"Siempre Adelante"

(Always Forward)

Its simple but effective.  We get knocked down, we pull ourselves up, we brush ourselves off, and we take another step forward.  What other choice do we have?  Sometimes you have to sleep walk to get that foot out there but dammit, for the sake of your child, you move!  Have I done everything POSSIBLE to help my team today?  Have I done everything to help my daughter today?  I tell you, after great days like we've had this week when she has turned a corner from a bad week and a half prior, the feeling of resolve grows that much stronger because we were able to find a way to step forward.  The celebration of a good Thursday today seems that much more enjoyable.

Soon after my last blog post, we got the green light to take her off the antibiotics she was still on for the C-Diff bacteria.  Thank god.  Not sure yet if we can get an alternative drug for her if this were to happen again, but after she came off of it, she started eating again.  She had lost almost 2 kilograms (about 4.5 pounds) in about 2 weeks time.  Just today before her chemo treatment started, she weighed thankfully in having gained some of that back.  Even better is that on her lab day last Tuesday, after a week of immune system readings so low they couldn't even run the test to completion, she marched in and put up a 1200 on the ANC scale (she was at 100 just 7 days prior).  Her energy has been way up this week, she has been laughing out loud at her brother, ordering Polly around as to which is the appropriate sippy cup for every meal....AND just being a two year old.  Her high ANC levels means she will have no delay in starting her next set of 4 week treatments, which actually began today.

Polly took her to LPCH today for the drug that requires pre and post hydration of several hours.  It was a 10am-6pm day.  And El handled it like it was nothing.  We began the nightly doses of 6MP again which is now handled in this household like we've known how to suspend it in solution for years.  We give this to her after she has been asleep for 2 hours and tonight she took it and went back to sleep instantly.  She also had that prickly catheter put into her arm for her 8 Cytarabine shots we give in the coming week and a half at home.  Again, like it was nothing.  I think later in life at some point if I have ever have a problem moving one foot forward in front of the other....Ellie will likely be right behind me ready to give a solid (but loving) shove.  This girl is nothing short of a miracle.

So, our batteries have been recharged and I think the in-patient experiences we deal with make the healthier times even more enjoyable....even if we do have to use a baker's dozen worth of sippy cups during the day until we finally use the one SHE wants.  We do not have to go back to the hospital for 7 days and they do not expect her blood counts will fall for at least the next 7-10 days.  So, this should be an awesome weekend to play, and you better believe we're going to jump on the bed.

We said goodbye to one of our favorite travelling nurses today who finished her stay at Stanford and is now moving to San Diego.  Polly said Ellie ran to her and gave her a big hug today before they left to come home.  One of our many personal angels we've met on this journey.  Thank you to all for the continuing prayers.  The orange ribbons of hope worn by many of our friends and family catch my eye every time.  Cancer will NEVER be able to break the many blessed hands that are holding Ellie up right now.  For that, Polly and I are eternally grateful and maintain unwavering courage to keep moving forward.

September Rain - Day 68

If you have a few minutes and need not have total quiet around while you read, consider listening to the song that has been a bit of a hopeful theme for Polly and I this past week while our family was separated between home and LPCH.  It isn't THE song of all time, but for the lingering final days of August at LPCH, this was a little musical escape that provided some relief at night while we chatted online.  It is "Every Teardrop is a Waterfall" by Cold Play - Click HERE.  Feel free to just turn that volume button to the right a whole lot...

I read a passage on one of the online Leukemia support websites which has rang true in the last few days and something I hope to grow into a bit more.  It serves as model for daily strength.  The question asked throughout the passage is this - "Are we here to weather the storm....or are we here to go dancing in the rain?"

Ellie was discharged from the hospital on Thursday afternoon just ahead of the labor day weekend.  This ended her 8 day stay battling a virus, a bacteria infection, and the bad side effects of the Vincristine chemo drug she's gotten the last two weeks as well as some very nauseating anti-biotics.  She got through all of it.  I feel like we're dodging bullets here sometimes, but she is home with us now and at times a lot happier than last weekend.  We had wanted to do a beach day this weekend to celebrate her being home, but her nausea has been pretty intense the last few mornings (and an evening or two).  So, we decided the long trek over the hill to the beach was not the best idea.  A very good friend of ours offered an awesome alternative to come sit at their pool and let the kids swim.

Timmy & Ellie were both in weekly swim lessons prior to Ellie being diagnosed.  We were going to a pool in Portola Valley with an extremely kind instructor who had been working with kids this young for a very long time.  During Ellie's lesson the Saturday before June 26th, she wasn't her normal self like she had been so many lessons prior.  While she typically tried her best to swim to the wall and back all too excited to give a confirming glance back amongst a teethy grin to us that she did in fact just accomplish perhaps the greatest thing ever in 2 year old water-lore, on that day day she cried the entire lesson and wouldn't let go of Polly once.  Today marked her first trip back to the pool since then and we got some pretty darn good smiles for it.  Her queasy stomach didn't allow for all of what she was capable of a few months ago, but just being in the water was good enough for us.  We topped off the day by making some gourmet Cheese Truck grilled cheese sandwiches (so good).  Ellie passed on the sandwich but put down some pasta so it was good enough to make the day a good day.  We are very thankful to our friends for making the pool pleasure possible.

She is at the halfway point of the 8 week Consolidation phase.  We must now make blood counts to repeat the same four weeks again this Tuesday.  Her counts were on the rise when we left LPCH a few days ago which is a great sign.  Her platelets were already above 300 (normal) and her ANC (immune system) counts were hiking upwards of 350 (She needs to be at 750 by Tuesday).  White blood cells with El tend to shoot up in large spurts so given that the only chemo she really had this past week were Vincristine and low dose Methotrexate (both not big immuno-suppressants), we are very hopeful to stay on schedule.  The next four weeks will be exactly the same as the last four weeks minus the four spinal shots.

The toll on her body from fighting the virus this past week has put her in a place with some of her meds that she doesn't want to eat anything.  We are trying everything in our power with food but to no avail.  It is a fine line to know when to stop attempting to give her food because we've had a "reversal of fortune" on several occasions this week. She has lost some weight now and is looking much thinner (never thought I'd actually miss the Steroid days from early July).  This adds to the worry of the situation a whole lot.  Appearance can be such a reassuring thing when we see things we want to see.  The anti-biotics ended today so that will be one less annoyance to her appetite and all we can do is hope tomorrow brings a little more relief.  This three day weekend has been a bit of a rocky road because we did get the smiles in the pool but she is also not completely back to 100% energy like she was before Consolidation started.  If we clear Tuesday's labs, she'll have a long chemo day on Thursday like we did in early August where they give her a drug that requires 2 hours of pre and post hydration.  If there is a needed transfusion, that will happen on Tuesday after labs.

The Bass center waiting room offers an opportunity to meet several other cancer warriors and show support sometimes by something simple as a friendly smile.  How much more fervently can I say this - these kids are Heros.  They do not get caught up everyday like we do with questions of "Why me?".  They just do what they do to dance in the pouring rain without too much worry of tomorrow.  I know we will all be remembering the Sept 11th tragedy in a week for the 10 year anniversary.  9/11 was life changing, something dare I say not many fathomed was possible.  We see families in the Bass center every week now who are experiencing their own personal "June 26th".  I never in a million years thought cancer would happen to my little girl.  September is Childhood Cancer Awareness month and I hope you will join me in spreading the good word.  In doing so, I also want to share with you an awesome video put together by one of Ellie's friends, Jacob, from the Bass center (who was diagnosed with the same Pre-B ALL 6 months prior), so aptly nick named - The Leukemia Slayer.  Click HERE. Side by side, Mr Slayer, we proudly fight next to you.

There is just so much of me that wants to be done with all of this.  Every groan from Ellie and every happy, healthy child we see having the fun their supposed to be having when we pass by can trigger that thought.  But, our forever shift in course from June 26th has changed the perspective from wanting to just get this over with....to working through everyday to find the wonderful person that we know Ellie is now and will be for many days down the road.  I can't see the end of this particular "storm" right now and frankly I don't care about that on a daily basis anymore.  When she laughs, I laugh...and we all relax for the moment.  I'm not sure I'm at the point where I can dance in the rain quite yet, but somehow, someway I know we are moving forward.  Very much like the car ride a couple weeks ago, I CAN say I hear the music loud and clear.