Relief - Day 222

The first three months of the twins' lives were something of a blur.  To say that Polly and I were thrust into a world we really had no idea about was an understatement.  There simply is not anything any person or book can do to fully prepare you for the whirlwind of newborns.....ours crying in stereo on many occasion.  I think about all of the athletic events I have played in, all of the mountains I have climbed, and nothing compared to the fatigue we had in that first week of trying to figure out how to be parents.  Day by day we found a groove with a small piece of the process.  Soon those pieces began to fit together into daily and nightly routines.

We still laugh about the phases of nighttime feeding that occurred and how they coincided with a particular section of television.  It was much quicker to have both of us feed them at the same time rather than Polly trying to feed both and so we both arose a solid 2-3 times per night in the beginning.  The first month or so major night time feeding happened around Letterman at midnight.  The "Will it Float?" segments were just amusing enough to keep my eye lids open as waking after only sleeping for about 2 hours is probably the next best thing to poking myself in the eye.  In the second month, they began sleeping just a little longer and we now were waking to check out Jimmy Fallon at 1am.  He was hysterical and we even would stay up a few minutes beyond the baby bottles being emptied just to catch the end of the show (this was our "honeymoon" phase).  By month three, they had started to sleep longer hours and now we were getting up for the night time feeding around 4am where mindless bad jokes were intertwined with the previous days news by newscasters that hated their jobs.  By the time the feeding was over, it was nearly time to get up to go to work and sleepily start the next day all over again.  Not fun.  Finding relief in a moment or two of peace was what helped us through.  Those three months were hard and I think character building for us both during our parent orientation/trial by fire so to speak.  And yet newborn life is a cakewalk compared to what we have faced in the cancer world.

Relief comes in many forms these days.  It can be the two hours we have after the kids go to bed which we have to ourselves or it can be that rare night where both of us can sleep for 7 straight hours.  I find time to pause when I am at school and try to just sit for 2 minutes to take a few breaths and listen to the world going on outside the classroom.  Mostly though relief comes from Ellie finding a way to smile and let us know they she hasn't a care in the world when she is feeling good....so why should we?  The burden is heavy to bear but I think when these daily little breaks can happen, it allows us to focus on the moment and where we're going while not dwelling on where we've just come from.

I can't sugar coat this past week.  It has been our living hell.  For seven days (since a week ago Friday), Ellie was either crying, screaming, moaning, or sleeping.  The cumulative effect of the three Doxorubicin and Vincristine injections finally hit her in week 4 of DI like a ton of bricks.  Add on top of the that the nasty side effects of the DEX steroid, and you just have a concoction for misery.  She would wake in the morning looking for food, eat a bit, and then start complaining of not feeling good.  From there she would usually not allow Polly to either put her down or leave her sight for the rest of the day.  Putting her in the bath was almost like we were dipping her in a boiling cauldron and then after bedtime, she would wake about 4-5 times a night so that we both got about 3-4 hours of sleep.  We attempted to get the docs involved to figure out if this was abnormal or if we could do anything for her....and the response was simply - no, this was the expected reactions to be had in DI.  We did figure out her biggest issue was constipation.  Her cravings on this second pulse of DEX consisted of string cheese, croissants, and milk.  Not the best mix to alleviate an already unsettled digestive system.  We counter with a balance of mineral oil, miralax, and warm baths but sometimes nothing works when the drugs are in such full force.  She had to go so bad at one point that she was too scared to do it because of how painful it was.  And so the screaming continued.

I guess in the back of my mind, I knew the end had to come eventually because the steroids would be done by Tuesday and the chemo had left her system in Consolidation after about 5 days from onset of side effects.  BUT, when you are in the moment that lasted as long as it did this time around, you question everything that is happening to her, your heart races in several segments of the day with worry, and there simply is no place to find relief.  How can a parent find relief when your child is suffering with a life threatening disease and there is nothing you can do about it?  Whatever in the world I worried about prior to leukemia is just completely and totally irrelevant.  We turned to one of the only things we could - outreach to family and the power of prayer.

I saw Father Joe in the hallway on Wednesday as I was leaving to go to practice and then on to home.  I was absolutely exhausted and had decided to take Thursday off to help relieve Polly and do whatever possible to find the smallest chunk of relief (even if it was just an hour more of sleep).  He asked how Ellie was doing and I told him about our rough week.  He offered a comforting smile and prayer.  Earlier that day I had received a letter of support directly from the Archbishop of San Jose, also offering his prayers and support.  (Incredible) After Polly's last post that afternoon, several friends sent text messages.  A midst my anger with the situation and fatigue from the seemingly never ending cycle of despair she was feeling, Polly and I found relief from the numerous folks who put Ellie at the forefront of their thoughts that evening.

And on Thursday morning we had our turning point.  After being up most of the night again, Ellie woke up and smiled for the first time in seven days.  She asked for some gnocchi that morning, ate every bite, and then went to play with Timmy as if nothing had ever happened.  WOW.  She was laughing out loud and pushing her stroller around...I had to do a few double takes.  My daughter was back.  On Friday morning she woke up singing!!!  Before we knew it she was ordering her brother around again and demanding he share toys.  I believe in Miracles no doubt and hope that we are on our way to seeing one in about 5 years time when we can say this disease has left the building permanently, but this was a minor miracle moment of perfection.  And it was the ultimate relief.  Prayers answered....and I about gave Father Joe a bear hug when I saw him the next day at school.  God is good.

You move through this darker period like we just had where it would be so nice to just squeeze your eyes shut and wait til it passes.  We realize how vital every single message of support was that came our way and honestly feel that was the single cause of the sudden relief achieved.  Ellie is an amazing little girl.  She is losing her hair by the handfuls this time around.  Every pillow she lies on right now gets a nice dusting, so I think we are heading toward complete loss (she has always maintained a little on the very top....but it appears the DOXO means business this time).  She doesn't care one bit.  Tonight at bath time I even got the fmailiar request to wash hers like I do Timmy, and so she got a face full of shampoo to her utter delight.  Her smile gets bigger with every building block successfully placed on her path to recovery.  Here it is Saturday now and last week already seems like a distant memory.  As I said several months ago, we're dodging bullets here, but we're surviving.

Her blood counts have remarkably remained good through the first half of DI.  She has yet to drop below an ANC value of 900 and has not needed any transfusions.  She is on course to qualify for the second half of DI in her labs on Monday.  If she makes it, we will begin again on Wednesday with a 10 hour chemo day.  She'll have an LP in the morning followed by pre hydration in prep to receive the Cyclophosphomide.  They will insert a Sub-Q (sub-cutaneous) injection site temporarily into her upper arm so that we can give her the four Cytarabine shots (known as the ARAC drug) once she gets home.  The ARAC will make her hemoglobin drop dramatically so we expect the transfusions to start.

We are still germ free and will keep it up as long as possible.  Every diaper change now gets two types of preventative creams and every hand gets washed as often as possible.  Lessons learned from Consolidation a few months back.  Our lone escape with the kids out of the house is up to Polly's parents house and T&E seem to think right now there could be nothing finer (well ,we do have a bounce house up there....OH and "owls" I always tell Timmy to go look on the outside deck for just so I can hear him go "HOOOO HOOOO" into the trees).  It isn't much in terms of what they possibly could be doing if Ellie wasn't sick, but in a way it is everything.  Still too early to tell if we are winning the war here, but if you haven't seen her when she is happy like she has been this weekend, you would darn near consider her invincible.

A player of mine hit a shot on the field during today's game from 40 yards out to score his first goal of the season.  The ball hit the underside of the cross bar and tucked itself into the corner of the net for a stunning 1-0 lead (which we would not relinquish) against our biggest rival on this day, his final home game as a senior.  I could not think of a more deserving kid for this to happen to.  This summed up perfectly how this weekend has been.  Magical moments spark incredible emotion as everyone reacts to the unexpected with joy and hearts full of hope.  For me, the magic this week was in the relief Thursday morning brought.  But even more so, every time something like that happens, no matter how few and far between, I get a burst of energy that pushes me back out there (sometimes I am sprinting) to help her fight again tomorrow....with even more strength than we had today.