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Month: March 2017

Metamorphosis

March 25, 2017 Uncategorized

March 25, 2017 (Scott)

After last week’s solid lab results, we finally felt comfortable enough to hit the road for our first vacation in a while. On Monday evening we loaded the Armada with everything we’d need (and more) and headed out of town. Fifteen hours later we pulled into Uncle Chris and Auntie Amber’s driveway just outside Phoenix. The sunshine, warm temperatures, and backyard swimming pool have been welcome distractions– thank you Auntie and Uncle for letting us take over your house… I promise most of the damage isn’t permanent.

Already we’ve had two ‘pool days,’ seen a Dodgers spring training game, and visited a butterfly sanctuary. Sunday we’ll check out the zoo and hopefully sit by the pool a bit more before heading home.

Maya and Lincoln have been excited to go out and do some new things. The car rides have been pretty easy, and they’re both trying hard to sleep in their own beds. Maya has stayed in her bed each night aside from one bout of leg pain. Linco will sleep all night without trouble, but
unfortunately he likes everyone to be awake by 630am.

As always we’re cautiously optimistic that all systems are normal and our reasonable precautions will protect us as we’re away from home. The kids seem grateful for a new environment to explore with new characters and situations each day.

We are so very thankful for supportive family and friends, for new opportunities, and for the courage to embrace them all. We cherish these moments of fun, humor, warmth, carefree living; and we are mindful that there are always others who don’t have it so well. We pray for peace, strength, and good health for all those who struggle and for the caregivers who never quit.

Thank you.

In the Zone

March 15, 2017 Uncategorized

March 15th, 2017   (Scott)

ANC 1290 today! (Ideal range 750 – 1500).
All other lab results look great too.
We’re cautiously optimistic that this is the start of the easy maintenance phase we’ve heard so much about.
We hope you’re all well and a little extra lucky this week.

1550

March 8, 2017 Uncategorized 1 Comment
March 8, 2017     (Sara) 

Until recently, I had no idea that I could gravitate to the negative very easily. I don’t think it’s years on this Earth. I don’t think it’s jadedness. I don’t think it’s even the fact my kid was diagnosed with cancer one year ago. I think there might be times when my naturally honed optimism just needs a vacation. I’m always the first to smile. The first to see the positive. To laugh. I thrive on laughter as much as I do energy from food, nourishment from water, or vitamin D from the sun. I have a strong affinity to the wonderful and convivial parts of life and this world. Some of it comes from deep within my soul while a good part of it from my family. I was raised in a home where the echoes of memories are that of giggles that turned to tears of joy and gasps for air between bellows.

It’s not surprising that my optimism has come to something that resembles a strike. It feels taken advantage of. I have leaned on my optimism continuously for my entire life not really giving it the appreciation it deserves. My optimism has a face of a dragon but it is tired of holding me up. Its tired of keeping me going. Of keeping me strong and calm. My optimism appears to be weak… at least at this point and I shall just accept it for now. I have full faith that these last several months of my consistent reliance of my optimism have depleted it. Over the last few weeks I have attempted to pull my positivity from the darkness but I believe it needs a real rest. I need to give it some time to regain its strength and return to me with full force. I will respect that. And it will return.

Today we had labs. And while the numbers came back in a more positive range, I felt numb. The doctor said “do a happy dance” and I felt “meh”. Scott has a wonderful outlook on the numbers and when he asked me what my thoughts are…they were not positive. I am realistic that an ANC of 1550 is likely ideal at this point. We are due for chemo in one week and if she were to be 900 today she might be too low to give chemo next week. I get it. I’m just not super stoked. I’m not on the high that I would have thought I would be. We are on the right path. We are getting there. I just wish it didn’t have to take so long. 1550…that is 50 units above the range that keeps her prognosis as good as can be expected. 50 units to the best possible outcome. 50 units to the sweet spot…and some respite to my anxiety about relapse.

I am a strong believer in the Law of Attraction and while I consciously push any negative thoughts from my brain…I feel like I can’t keep up. Considering relapse is as threatening to me as pondering Space or the vast unknown. The unknown scares the crap out of me. And I’d rather not really think about it. But then it always pops up. Usually I’m protected by my optimism. I imagine my optimism looks something like Joy from Inside Out….but with pink hair. No green. Yeah green hair and bright blue eyes. And pink skin. But my optimism usually saves me from fear. I can always talk myself out of feeling bad. Unless my optimism is on a vacation. Then I need to go on vacation too.

Motherly assessment: ANC 1550 (oh child…could you not have made it to 1400?!?). The range we desire is 750-1500. That is when the risk of relapse is lowest. I don’t have the other numbers aside from knowing her platelets are good, her hemoglobin is good. At the point of communication with Dr. Zucker, her CMP (metabolic panel) wasn’t available yet but since I didn’t hear back, I’m assuming her liver function is good too. She is pooping like a champ. My mom recommended CALM – its a magnesium supplement and I think helps a lot. Though since we changed other things at the same time, its hard to know what is helping…but we’ll take it nonetheless.

Her energy. A+

I have told people…I can handle anything as long as she is feeling good. And she is. She wants to play, run, jump, ride bikes, go outside in the freezing blizzard, dance, do yoga, and breathe fire. This child of mine is good. She is SO GOOD.

Lincoln is also so good. He makes jokes and keeps us laughing like I could have never expected.

In case anyone is interested in Pelei…the great Poof. She’s also great. 12 ½ years old and still dreaming of playing ball and swimming in Tahoe.

We are all good. Optimism or not, we are good. Maya the dragon is fighting a hard fight and making it look easy. We are making friends and helping each other get through this. My optimism will return soon…I know it will…It has been a year and just needs to pull over for a break while running this incredibly long, hard, intense, marathon.

Thank you all. From the bottom of my heart, thank you.

Love is Life

Big and Small

March 2, 2017 Uncategorized
March 2, 2017    (Scott) 

One year and seventeen days since Maya’s diagnosis, and things have gotten easier and harder. Routine continues to creep in and then be pushed back out. Ideas are discussed –travel, school, opportunity– plans begin and then fade in the certainty and uncertainty.

The other night Maya said something that might have been profound– the truth is I was half listening, preoccupied with the momentum of bedtime. She said something like, “Daddy, sometimes it’s like we’re here and not here… like we feel good but also not good… we’re happy and we’re sad.” I wish I had thought to write it down because I think there was even more to it. Anyway, my mind kicked into gear just at the end– she seemed a little troubled with this, so I asked her if that made her feel nervous or scared. She said, “No. It’s exactly how I want it to be.”
I’m not sure what she meant– sorta like I know and I also don’t know. At least now that I finally took the time to write it down I have a shot at one day seeing the bigger picture.
I’m proud to say that I gave blood today– also I’m embarrassed to say it was for the first time ever. I’m not sure why I never gave before. I’m not really afraid of needles– probably just lazy. Maya has had two blood transfusions, and I’ve seen first hand what an army of fresh red cells can do to help a struggling body– color, energy, mental and physical stability can all head back toward normal in astonishing short order. Today the bag filled quicker than I expected, and I was done in under ten minutes. Funny that it took me borrowing Maya’s big courage to do such a small thing.
Maya’s labs were better but not yet the ‘good’ we’re looking for. Her liver function is outstanding and her bilirubin was down to .4, so it seems the toxicity we saw weeks ago is being managed with the allopurinol. Her ANC was 2400 which is down significantly from 4900 the previous week, but it’s still not in the range we want in maintenance (750-1500). We continue to ratchet up the dose of 6mp from 20% to 50% and now to 75% of the original protocol recommendation. As always there’s a chance we cross a line and crash her cell counts, so we begin another week with moderate to extreme precautions. No unnecessary trips out, no birthday parties, no parks, no school. Maya takes it in stride, but she knows there are limitations. She misses her cousins, her friends, and she misses being out in ‘the wild.’
This house could be a small place for Maya each day were it not for Lincoln. Together they can turn a living room into an entire ocean– complete with soundtrack inspired by Moana. In Lincoln’s world, Maya is the ultra super star– sometimes teammate, sometimes competition and always center of the solar system. Lincoln at two is just about as awesome as he could possibly be– like the mini caveman of our world: two word sentences, eat with hands, and when in doubt smash closest item on the floor.
There are many things we both know and don’t know about this journey. Uncertainty is the worst and also the constant. In a world of contradictions, though, there can be peace and strength, and it’s here because of your consistent love and support. I wrote some time ago that I don’t know what it would be like to go through this alone, but I imagine it would be awful. We’re so blessed to not know what that would be like. Thank you.