Baptism - Day 156

Both kids are into this particular 3 min video clip right now on you-tube that shows a small girl feeding, riding, and grooming her horse, Strawberry.  When the clip ends, suddenly 2 pairs of eyes shoot upward at one of us and proclaim in unison "AGAIN".  And we play the clip one more time only to see the same result repeat itself several more times.  They want to press on and keep going despite the growing feeling the ride on ol' Strawberry is wearing out its welcome and getting old.  From their vantage point, every time the clip starts, the ride begins anew.  Fresh, exciting, and carefree.  Its a lesson for the bigger roller coaster in the room where the exit is no whereto be found for the time being.

So, AGAIN we go.  This time I am happy to report we're on an upswing.  Ellie's residual chemo in her system finally left her sometime Sunday after Thanksgiving.  By the next day her energy was back, her mouth sores had subsided, she ate a couple of grand meals, and this morning she climbed onto my bed while I still had my eyes closed and "honked" my nose a few times to make sure I was awake.  I think I told you earlier that when she finally turns a corner, she does so in a remarkable way.  Its the kind of bounce back that makes you feel like anything is possible.  Well for the moment it means we can have a few dinners at home, take some Christmas pictures on Friday, and dance in the living room to Coldplay's "Every Teardrop is a Waterfall"  (Requested now by Ellie on a regular basis - who knew she had good taste in music?!).  You should see her dance....moving her arms side to side and stomping her feet while she spins til she's falls over dizzy like she's about to audition for Footloose.  It's hysterical and amazing all at the same time.  Timmy has just recently found the volume button on the ipod as well, so we are certainly not shy on being able to overwhelm the dancing space with sound.  Any why the heck not?  Let's dance - AGAIN.

We have labs tomorrow to check her blood counts.  Her ANC value was low last time so it will need to have risen in the last four days if we are to qualify for the last in-patient chemo for IM, which would begin this coming Monday.  Her mood right now suggests this is a good bet.  We've been very lucky not to have had any delays to this point in IM and though we will soon have another go around with the mouth sores, queasy stomach, and long fits with tears, at least after one more in-patient stay we know we'll be another step closer. I think even though her periodic rebounds after rough spells are known to be inevitable with routine chemotherapy, there is a part of Polly and I that grasp a hold of it with both hands like its our first experience with feeling better.  The lesson in perseverance fuels the work ethic we aspire to have everyday to be "on" at all times.

The now several fellow cancer parents we have met both in person at LPCH or interacted with online on the LLS message/sharing boards are not people we would have known prior to June 26th.  But the enrichment felt with small messages between them, be it directly or indirectly, bring an incredible sense of family.  So, when Polly and I are "on", especially during in-patient stays....there is relief in numbers when you can share a few moments with somebody going through the same thing.  I tell you this because two families who are regulars on the message boards we are a part of saw their kids relapse in the last two weeks.  While Polly and I know we're still on a good path as of right now, reading the shock and disbelief for a set of parents who have already been through so much brings on anger and sadness.  I'm not the type of person who can ignore these possibilities.  You can bet that upswings bring huge fillers of hope where thoughts of invincibility come to mind, but I will never be naive to what we're up against.  When you can't get off the ride, sometimes those in the seats in front and behind you are who you have to count on.  So, I am praying for their kids tonight - Jakob & Leanne.  Their parents deserve Leukemia world wagons to be circled, millions strong!  What else can we do?  We have sympathy and comfort first but then there must be faith encouraged to no end in the medicine, both physical and spiritual with Hope as the guide.  With Ellie in a good state tonight, I'm ready to slay a few dragons for them.  You have to Hope.  You HAVE TO.

We have been given the gift of opportunity this coming Sunday.  An opportunity to begin again, renew our faith, and put T & E in God's hands so they may thrive.  Yes, Thrive (What a word!).  We'll be baptizing them at St Gregory's in San Mateo at 2pm under the guiding hand of Father Joe, who has been an enormous support for us while I've worked at Serra.  I am nothing but humbled with the chance to take part in this.  The church has plenty of room and all are welcome.  Despite sleepless nights, mouth sores, and thoughts of doing this all over again in 5 days time.....we have dancing, we have hopeful prayers, and through baptism, we get to begin AGAIN.  That's a full week.  That's a helluva week.

Speaking of week of weeks, we are in the midst of the annual "Jimmy V Cancer Awareness Week" which culminates next Tuesday night with a double header of college basketball promoted for the past 16 years by ESPN to help raise enormous amounts of funds for cancer research.  In between the two games (roughly around 6pm Pacific Time), they will show the immortal speech Coach Valvano gave at the 1993 ESPY award ceremony about a month before cancer took his own life.  Its worth every second.  So, in the hustle and bustle of the pre-Christmas season, perhaps add a few things to your list - put yourself on the bone marrow donor list, find time to give a pint of blood to the Red Cross, and consider giving to the "V Foundation".  To paraphrase Jimmy's words as I watched Ellie dance tonight, "Cancer can try to take away all her physical abilities....but it cannot touch her mind, it cannot touch her heart, and it cannot touch her soul."

We're gonna beat this thing, El.  Daddy is making you a promise.

Thankful - Day 150

My 11th grade english teacher taught me a literary lesson I certainly won't forget. Maybe not a single lesson persay as it is more of method to look between the lines for deeper meaning in a story. If knowledge is power then finding unwritten meaning in such a manner is where power meets clarity. With clarity comes peace. Its understanding from all angles, so to speak. There were 2-3 books we read in class that year each with a supporting character that had the initials J.C. I'm no literary scholar but the use of such a tool was very meaningful and enriching. A tangible Christ like character that saves the day in an indirect manner but with a striking and, more importantly, lasting impression.  J.C's make poignant decisions, sacrifice for the greater good, and find a way to reassure everyone else in a way that is unquestionable.  Collectively the main characters benefited from JC's actions....but to find an end to their own journey, they all had to eventually find their own way home.

Since those days in junior english I've watched for J.C. to show up in things I've read or seen. Its kinda fun to look for actually.  John Coffey in The Green Mile and Jimmy Chitwood in Hoosiers are two of my favorites. Both men make those around them better and each can provide relief to suffering in a way no one else can. Chitwood's stone cold confidence in putting his coach, team, and entire town on his shoulders when everyone was looking at him to do just that is a Hollywood miracle, yes, but provides food for thought to those of us that have to go at this thing on our own.  Real life doesn't really allow for such a character to swoop in and provide that ultimate relief.  My mind can't help but keep searching for a form of that person though.  Trust me, we often want our doctors to have all of the answers and are persistent with questions hoping we might be the first to know with 100% certainty that she will be cured.  In that search I know I will likely finish many conversations in the same place I started - still worried that my daughter has a life threatening disease.  But even if I cannot find that lasting peace for a while, I am thankful tonight for the ability to believe that pieces of J.C. show themselves in various forms through several people everyday.

We were able to bring Ellie home on Sunday and that was a blessing. She was full of life on Monday and we kinda ran through the day like we were normal. By Wednesday the chemo had started to hit her very hard. One of the awful side effects of the methotrexate are these mouth sores. They are big, painful, and make her world miserable. Couple that with onset of the nausea that shows itself typically 3-4 days after the HDMTX has been given and it just kinda snowballs on her. Our Thanksgiving was not in the hospital and for this I am grateful, but the toll on her has wiped away any fun she was having earlier in the week and Turkey day came with a lot of tears.

Last night was a 3am wake up call where we are trying to figure which of the meds to give that will ease her pain.  She was pretty queasy all day Thursday and did not eat or drink hardly anything.  Fortunately, we had labs set up for today (Friday) at the clinic as per our schedule after being discharged last weekend.  So, we were able to get a look at her blood counts and get some IV fluids for her.  She's dipped under the neutropenic line again.  Staying home for the next few days is now a must.  They gave us a more powerful pain med to help but really it seems the message coming out of the clinic is grin and bear it while making her as comfortable as possible.  (See why it would be nice if I could just take her over to John Coffey's cell for 2 minutes about now)  Ellie screaming for 20 minutes is doable, but over a few hours complete with an upset stomach is not something I would wish on anyone.

Today, one of our favorite nurses came to see Polly and El while she sat and got her fluids today in the clinic.  She mentioned that the teenagers who are fighting Leukemia at LPCH almost always say that this part with the severe mouth sores is the absolute worst of the entire treatment protocol.  This being said to us during what is supposed to be a lighter phase ahead of our most difficult phase of treatment in a month's time.  But you know I thought about this when Polly told me about the conversation this afternoon.  If this is one of the hardest parts, then right there is some small reassurance that we can handle what's ahead assuming we survive the weekend (and we will survive the weekend).  I'm not going to say that I don't doubt from time to time....because I do.  This struggle is all encompassing and emotionally exhausting.  But like a J.C. character, the nurse today without saying it directly was offering a calming voice that related and reassured.  That's amazing.

So, now we just try to wait this out.  Though she didn't eat much the last two days, she did manage to ask for and then devour 5 bites of pumpkin pie.  12 hours of on/off tears and not all is completely lost around here.  Pumpkin Pies by Jane Craft?  Not sure because the pie boxes were thrown away by the time the pie came to us....but it wouldn't surprise me at all.  I am thankful this Thanksgiving for the hope provided in the small but daily doses from people who care when they don't have to.  In some of our desperation to ease her pain on days like today, remembering those moments are as solid as a Jimmy Chitwood jumpshot.

Cleared - Day 145

Prayers answered!  Ellie came home tonight (Sunday) from her 3rd in-patient stay during IM after only 48 hours in the hospital....a full three days ahead of when she was discharged during stay #2.  It was her shortest stay yet.  We're clear now from chemo for two weeks which means after the short work week, we'll get to have Thanksgiving as a family and get a full week after with little interruption.  She came home with a huge grin on her face.  I have more I want to share, but too tired tonight.  I will have a longer post in a couple days.  My little girl is simply amazing.

For each new morning Thanksgiving Prayer

For each new morning with its light,
For rest and shelter of the night, 

For health and food, 

For love and friends, 

For everything Thy goodness sends. 

Ralph Waldo Emerson

Never underestimate the fighting power of the human spirit!

IM Midpoint - Day 140

140 days.  Really?!  On many days its hard to remember what life was like before cancer and yet so many others I can recall all of the things we were doing the days before diagnosis as if it were yesterday.  Onward we go.  We have reached the half way point of Interim Maintenance (IM) having completed 2 of the 4 hospital stays for dosing of HD Methotrexate.  We are in the midst of trying to qualify for stay #3 right now.  Ellie has had labs done Monday and Tuesday of this week and not quite gotten there.  Her immune system (ANC) has remained in tact for almost all of this phase so far (knock on the biggest piece of wood you can see right now, please) but her blood platelets have fluctuated a bit and are the current sub par level right now holding us back from the next admittance.

The last stay we had was nearly 6 days in-patient and Polly and I probably should have prepared better mentally for a longer stay than we did.  Her first stay lasted just a touch over 72 hours and silly us for thinking this time would be no different.  In the grand scheme of things I know it is not right to complain about the length of stays.  We have to go a lot further to get to the hospital in Mountain View which adds up to alot of driving for Timmy and I on our dinner visits.  But we think about our friends who commute from Sacramento for LCPH's cancer treatment of their 1 year old and we (ok, I) probably shouldn't complain.  Its tough to just sit in there and wait for her to clear the drug while Polly trys to care for/entertain and then get enough sleep in the process.

If Ellie can meet blood counts on Thursday, she'll be admitted on Friday morning to LPCH for another LP procedure (spinal injection) and then ambulanced over to Mountain View for the HD MTX dosing.  We are really hoping to start again on Friday so that she can clear and come home in time for Thanksgiving.  I don't need turkey, I don't need football, I just want Ellie home for the holiday weekend.

When she was discharged last week, we had such a good day hanging out as family, going to breakfast, and then running them both ragged at the outside shopping center at Stanford.  If it moves/chugs/glows in a store window, Timmy is drawn to it like moth to flame.  That coupled with multiple water fountains throughout the plazas - endless entertainment.  Oh and THEN, we watch the Cal Train come into the nearby station where both kids know the street crossing barriers come down first and next the train inevitably shows up.  Our conversation abounds with what will happen next.  Timmy of course is not wanting to move until his predictions of the crossing barriers rising back up come true.  We quite possibly have early engineering going on here.  Timmy will build it (check that - he will vigorously manage the process) and Ellie will show everyone how to wave at it as it goes by.  Garbage trucks, buses, trains...all deserve and receive a wave from El.

Her days home have been, for the most part, ok.  Funny what we consider "ok" now a days.  She throws up in the morning pretty regularly now 2-3 days post hospital stay.  She is able to communicate so much better with  how she feels (relative to a few months ago) that we know the minute the nausea has passed because her smile immediately returns and she starts proclaiming it is time to watch "The Elmo".  She gets so many bruises that you would think she has just gone 12 rounds in the boxing ring.  There are also a lot of little things that seem to pop up which are not immediate causes for concern but you just pray are not symptoms of a bigger problem, such as her current elevated liver function levels due to the HD MTX.  We try to follow the doctors advice if our concern should be real or not but still cannot help but think of potential issues down the road (after she's cured) that will come up with her health because of all the chemo she has received.  And therein lies the point where you have to reality check yourself back to the "living day by day" philosophy or else being overwhelmed would be a constant.  I wish I could say it is that easy.  It is not.  We get overwhelmed still at times every week, curse cancer to no end, and just try look forward to more days like our Stanford shopping center window shopping water fountain spree.

Thankyou for the continued prayers.  Please pray we can get into the hopsital this week by Friday.  We are trying to maintain our focus a midst this chaotic schedule.  The twins have taken a huge liking to pumpkin pie as of late (thankyou Trader Joes), so the goal right now is to have a huge piece in a week's time with the usual Hey Family turkey day gathering in celebration of making it 3 down and 1 to go.

Patience - Day 132

We've been in-patient at El Camino Hospital for 5 days now.  Ellie's 2nd of 4 High Dose Methotrextate administrations for Interim Maintenance was completed late Friday night.  We then sit and wait for it to clear her system while she is continually hooked up to a hydration IV in her port.  The hydration gives her a mixture of water, saline, and dextrose (sugar) to help flush her system and maintain kidney functions as best as possible.  She cleared in 48 hours two weeks ago but has been much slower this time around and as of now it isn't guaranteed we will get out tomorrow (Tuesday).  We get a new data point about twice a day regarding the drug level in her blood and her creatinine levels from her kidneys (elevated creatinine would mean her kidneys are struggling).  While El Camino is definitely the place to be for great care on "expected" in-patient stays, the labs still have to be shuttled up to Stanford for analysis and then shuttled back to us with results.  The couriers, as we have gathered, are anything but expeditious with this process.  (Funny how it takes me about 50 minutes to drive round trip from Redwood City and yet it takes them a solid 4 hours)  At the 24 hour data point, we were at 47% HDMTX and are currently sitting on a solid 0.25 heading into day 5.  We need to be below 0.1 to get discharged.  Hurry up n' Wait.

Polly has done an incredible job of finding ways to pass the time.  The highlight of this stay has been to go down to the 1st floor (cannot miss us en route as we bring our friend the 50 lb IV pole, pump, and assorted liquids with us) and peer in the window of the gift shop where they have the holiday decor up and in full bloom.  There is a small automated roller coaster where the cars get dumped off a conveyor belt of sorts and then get flung down the coaster's course.  She shrieks with laughter everytime she sees it.  After 20 minutes of staring in the window, a visit to the baby grand piano that plays itself is (of course) next.  While the music is really good, Ellie's main concern is "Where man playing piano, momma?"  Here we get to respond with whatever we desire and perhaps the remarkable thing is that no matter how thorough the response where stories of how the man is invisible yet able to play while standing on his head.....or the man left to get something to eat.....or there is no man, it is a magic piano....it is 100% guaranteed to be followed with her saying back to us (and in unison with Timmy when he is present) - "WHHHHHYYYY?"   If I ever see that courier, I am going to ask him how long it took him to get us our results back, listen to his lame excuse, and then have T & E do their "Why" rebuttle in full glory.  When the Twins go 2v1, we all have little chance.

I watch Timmy find ways to occupy himself when Ellie is not around and he certainly is not the same cheery guy without her.  He has fun, don't get me wrong, but he is starting to get slightly annoyed with her disappearing acts recently and of course he doesn't quite understand.  They say twins have a special connection.  I am your witness here that this connection not only exists but is quite strong with these two.  The first thing he asks about when he wakes up in the morning is "Where's Ellie?" and he wakes up far more often late at night when she isn't around.  In the last few weeks, he has shown her much more affection than before with hugs and sharing of his toys if he has tow items and can spare one.  When we get down to the parking lot to go home from the hospital, he asks all the time to look up to the window on the 4th floor to wave bye to her.  Ellie meanwhile can sit all day and look at pictures of her and T on Polly or I's cell phones.  We've recently learned how to send quick videos over our cell phones (yes, slow on that technological account) where both watch each other on the screen and then just look up after its over and say "Again".  It's something small in the course of the day, but when we have time to sit for several hours in the hospital by yourself in Polly's case or in mine at home....out of all the terrible things that have come our way in the last four months, these two bonding with each other has been an amazing gift to behold.  With cancer in our midst....we consider ourselves very fortunate.

I lost sleep a year and a half ago about what kids may say to Timmy about his eyes when he reaches elementary school.  He is so fun loving now and knows no cynicism whatsoever that it will be a tough day when he first realizes the person speaking to him may be saying something that he doesn't like very much.  Cancer has taken a lot of the worry away from this forethought. (Ironic, isn't it?)  I'm sure we'll still have some battles to fight with playground banter, but the fighting spirit we see developing exponentially with Ellie while she conquers this thing coupled with the simple yearning Timmy has to make sure she isn't too far away provides great comfort that these two already know they have one another to lean on when rough patches pop up.  As I see in the high school world daily, positive reinforcement from peers far surpasses anything we adults can do quickly when it comes to building a healthy social environment for the kids involved.  They have each other.  Even when we are a few cities apart by necessity (certainly not desire), they have each other.  T & E have an uncanny way of providing relief enough to help our family patience on nights when we just all want to go home.  This is a long, very tough road.

Time to sleep and think up all new ways to craft patient answers around the best smile inducing question in a two year old's vocabulary - WHHHHYYYYYY?

Consistency - Day 127

Busy Busy.  Interim Maintenance is not quite as intensive with the number of hospital/clinic visits overall, so we have had a relatively normal last 10 days.  Normal meaning Polly and I have both been able to work and also try to enjoy some of the little parts of this time of the year.  Ellie's blood counts have remained high since her last in patient stay, thankfully, and so as a result Halloween was a full go.

T & E went as Mickey and Minnie Mouse.  We were able to go around one of the quieter, little kid friendly neighborhoods nearby.  Quieter being key so as to try to stay away from too many germs.  They both had a blast and it was a joy to see them get into their first real trick or treating experience.  The Candy?  Yes, that would be the least of their desires.  The super highlight for both was jumping out of the stroller to run up to the front door and ring the "ding dong" (doorbell).  We could have ended the night right there and they would've gone home happier than clams.  They figured they should take something from the large bowl that every gracious adult who answered lowered down to mouse ears level and put in their bags.  That is after all apparently just what you do.  And then?  Race back to the stroller where Timmy proudly proclaimed "Mama - go NEXT HOUSE" where another ding dong awaited.  Priceless times.  And even better to feel like nothing was wrong for a night.

Ellie went in for labs this morning to qualify her for her #2 of 4 in-patient stays this coming weekend for this phase of treatment.  On Friday, we'll head back down to El Camino Hospital in Mtn View for the 4 day stay. Knowing the drill now will likely make the weekend go a little faster than last time.  Having her immune system stay above 1000 for over two weeks now has been a huge blessing.  It allowed us all to do flu shots and really get good n' ready for the cold season.  She is losing a little more of what's left of her hair (thankyou, Vincristine) but still asks on occasion in the morning while I am getting ready if I could comb it for her like I do mine.  I sure hope her innocence, in what seems to be the purest form, lasts until we can call her "cured".  It fuels the rest of my day.

The soccer season has now started for me so there isn't as much time as I like to write.  It still remains a very therapeutic outlet and keeps my eyes wide open with perspective despite the daily grind.  We're fortunate to have some quieter weeks right now.  Any chance you can to refuel and renew, you do it.  Ellie has been doing pretty good and we just hope that continues throughout this phase.  Getting through the upcoming weekend in-patient is our next obstacle.  We'll be ready for it.

Yesterday, the message in the All Saints Day school mass centered around the idea that the Saints were folks who became who they were because they were consistent with their path.  They didn't waver.  I think its interesting that either I am listening a little more intently on some days or this particular Homily just seemed to coincide at the right moment to outside thoughts circling the brain which I can pair together perfectly.  I heard a very reassuring and resounding  - Stay the Course.  Now, I'm not going to go mow some corn down and build a ball field, but you HAVE to hear this type of message from time to time.  A church service, a song on the car radio, a quote, a dialogue with a student you'd never expect to have, a call from a family member or friend.  I'm listening and I'm hearing many great things from many corners that help us consistently commit and do what we need to do.  Throw in a night of "ding dongs" and we've got some laughter along the way to smooth some of the rough edges out.

I hope you will pray for another little friend or ours at LPCH tonight, 5 year old Bailey.  She is one of these wonderful children who know not what is happening to them but only how to move forward with their days the best way they know how.  We are praying for her recovery, for her parent's strength, and for some smiles to show themselves soon.  The consistency in a kid's smile can speak volumes without physically saying a word.  It is familiarity in a simple form which in turn provides comfort.  If you listen, they in their own way are telling us adults that everything is going to be ok.