Family - Day 26

I remember lying on the floor at 2am(ish) when T&E were about 1 month old.  Ellie kinda fell into this nice pattern where if we put her in the swing and got it moving at a good pace, she'd sleep for a solid 3-4 hours at a time.  Timmy, not so much.  With the Bassinets deemed near useless after the first few days at home, we were willing to try any logical place to get them to sleep.  Timmy finally settled into a nice rhythm falling asleep in a baby bouncy chair that vibrated, all be it with work involved.  The problem was, getting into that "deep" sleep realm that those books talk about took some effort.  He would start to nod off, swaddled up like a baby burrito no less, and give the (false) hope that dad could also now go sleep....but then wake up to the smallest of noises.  Unless he was being bounced, he would not go back to sleep.  So, on many a night I lay there with my trusty air mattress on the floor, because I was too tired to sit up, with my arm above my head bouncing him ever so slightly until it was quiet long enough for me to finally savor my own slumber.

The concentrated time you spend in those first three months of learning parenting 101 (by fire for us with twins) is pretty incredible.  Not that I didn't leave many of my self serving desires of my late teens/early 20's behind several years ago, but a resounding theme in my head as I would drift off to sleep on those nights on the floor was simply, "This is SO not about me anymore".  Parenting brings FAMILY to a whole new level.  It is the ultimate multi-faceted perspective on how life should be lived with an endless, tireless, and supremely loving support system.  It is also the cross over from nurturee to nurturer.  Polly and I have derived the strength we have had to face this adversity because of the families we come from.  We can exhaust ourselves daily with the various appointments, medications, doctor talks, nurse needs, transportation to and fro, and endless supportive needs of T&E for all of these things going on BECAUSE....we were reminded daily growing up and even more so now who has our backs.

We have had a good week.  There is no doubt about it.  Ellie is laughing, playing, and scooting around LPCH like she knows everyone and wants to share that she is feeling better.  We are going to guard our optimism for  just a few more days.  On Wednesday, she will reach a turning point for therapy at Day 29.  Hard to believe in some respects because it does seem like this has been an amazingly fast process thus far.  The science doesn't lie though.  Despite having a good 2+ years of treatment to go, with some hard times ahead with side effects I might add in the next 9 months, the prognosis statistics all encompass Day 29 as the first major mileage marker.  I'll save the intricacies of that for another post on Tuesday or Wednesday.  We will have results of Day 29 by Friday of this week.  Summer school is now over for me which eases our schedule a bit though wouldn't you know it, I have jury duty tomorrow.  You better believe the cancer card is coming out of the pocket.

She is still in the hospital tonight as her immune system blood counts have not come above the 500 mark yet.  We were given a little hope for discharge on Friday when she had risen to 350 (highest since before chemo began) but they dipped a bit today (Sunday) likely as a result of the chemo from last Wednesday and that her body may still have some traces of the bug that put her in here originally about 10 days ago.  Our new hope for release is this coming Tuesday, just in time to return Wednesday for her half day bone marrow aspiration procedure.  During that procedure, they will do one more injection of Methotrexate into her spine to further fortify a clear spinal column and then she will be off of chemo for over a week allowing her blood counts to rise significantly.  Her hair has started slowly to fall out, but at the beautiful age of two her reaction is similar to my thoughts on people who wear sunglasses at night - Dude, it just doesn't matter.  Besides, hats with flowers have all ready been deemed by Ellie to be the coolest thing since learning how to "Cuggy" (color).  So there.

I relieved Polly tonight for a few hours so she could go out, spend some quality time with Timmy, and do some errands.  Her travels not too far away from the hospital had her cross paths with another dad who turns out is staying just a few doors down in the same wing right now with his son, Benjamin.  She told me he recognized her and they exchanged a few words.  He explained, his son had ALL leukemia at age 2, was in remission for 9 years and now at age 11 has relapsed with the leukemia now turning into the much less desirable AML form.  He just completed a bone marrow transplant 12 days ago and is now in a wait and see mode for a potential second remission.  Polly told me she could tell he was very hesitant to mention the whole story after first finding out that we are only 26 days into the process with the exact same thing.  So, after he tells his story what does he do instead of looking for sympathy for his own situation?  He immediately lets Polly know how good he feels about Ellie (after knowing her for a only few minutes) because 9 years later, the therapy and medications are vastly improved, we are at a superior place in LPCH (he was not back then), and we have many many more statistical reasons to count on than they did back in 2002.  Wow.  From his own prolonged struggle, he found words in a moment's notice to comfort us.  I hope you will join me tonight in saying a prayer for Benjamin, who in my estimation is as good as family now.  It is the least I can do.

My extended family gathered this weekend for my cousin's wedding in Berkeley.  With an incredible show of unwavering support, all of them donned and thus created a wonderful sea of small orange ribbons to honor Ellie's fight while we celebrated a much happier occasion.  Also told to me during the reception were a couple of prayerful actions taken back home by several of them on Ellie's behalf which  I will not soon forget.  Family is what we always return to at the end of the day and it is the lifeblood of who I am as a person.  There is no cost or resource I will spare to make sure my kids have the same support growing up, regardless of the self sacrifice, if it means they are afforded the same opportunities as I have been so fortunate to have.  It is again....the least I can do.

**UPDATE**  We had a surge in blood counts overnight and Ellie eclipsed the mark she needed in her immune system to be discharged.  So as of Monday afternoon, we are all finally at home!