Month: September 2016

Sept. 27, 2016 (Scott)

We started this wild journey mid winter 2016 and now have transitioned into the fall. 228 days have passed since diagnosis, and so much has changed. Looking back, the beginning feels like a bad dream, a sea of insurmountable obstacles–moments of fear and anger, long stretches of worry, wakeful nights, all sliding by like the horizon on a too-long road trip. Stuck in the backseat, it feels like you’re not moving at all, like you’ll never make it home. You doze off, wake up, and the landscape looks different; but there you are, still in the car, still riding along, still not home yet.

Home for me has always meant family–healthy and free of restrictions like treatments and isolation. We drove away from our house that Friday afternoon in February; we headed toward Oakland in order to get back home. It was the only route we could take, the simplest of choices–just go, handle everything that comes at you, fight with everything you have, and never never give up.

I have given thanks everyday for the hope that surrounds us. From family and friends, from our medical team and our community. I have given thanks for Maya’s unwavering courage–though she be but small, she is fierce. But this evening, I want to give thanks to the very foundation of my strength and the core and soul of our little family–to Sara, my treasured wife and ferocious momma bear to my children.

Sara and I face our challenges together every day–whether solving dinner with hangry kids at our feet or removing a three-quarter inch needle from our daughter’s chest after a home chemo project. The reason I’m able to push ahead no matter the test is because of Sara. I know without doubt she will never back down–it isn’t in her DNA. Of course, she will say my calm demeanor helps her to keep moving and to do what needs to be done. I may be calm, but the truth is I have a stupid-good poker face too, and it’s the faith in my team that grants me the semblance of composure–the faith I have in my partner, my muse, my love, my Wife.

 
Sara, you sustain my faith. You give me the strength to never waiver on this strange journey. Despite leukemia and chemo and steroids and worry, we have grown, our kids have grown, our family has grown. My hope is stronger than ever by your steadiness and power. Together we’ll get our little family back home safe.
I love you.

Sept 14, 2016 (Sara)

It’s incredible that complete strangers are able to give SO much. Maybe what’s even more unfathomable is that SO many strangers can make such a big impact by offering just a little. I find the phrase “every little bit helps” to be absolutely true in our little family’s case.

I’d like to thank Kelly Schnaible for a wonderful gesture of love, support, and awareness. Kelly and I grew up dancing together and have been friends for a very long time. She is a wonderful woman, friend, and mommy; one that has had her own trials to overcome and mountains to climb. She teaches at Manogue High School in Reno and tonight they are having a skate night fundraiser for Maya. She recently texted that over 300 kids are there…skating away for our dragon. I imagine all of them have no idea who Maya is. No connection to her aside from their teacher. But there they are. And they are sweetly caring while learning a little about childhood cancer. At least that it happens.

Hearing about how many people are there tonight reminds me so much of the Yogurt Beach fundraiser. So many people! And so many strangers! I really wish I was able to thank everyone. I want to thank everyone who donates to the go fund me, buys Maya love shirts, sends checks. All of you who say prayers for our family. Who use imagery of healing. Some of you have sent messages to me letting me know that churches in Europe have candles lit for Maya. Prayer circles. Meditations. Drum circle chants. Dances. Choreography. Bike rides. Blood donation. Gifts. And more! So many more!

There are so many people who are lifting us up that it almost feels strangely unbelievable.

For tonight’s fundraiser, we were asked to film a video. I imagine to succeed with a fundraiser like this, they needed us to introduce ourselves. Also, I appreciate that it brings about the idea of awareness; it’s not just about the money. It continues to feel awkward to accept money but when there is a chance to spread awareness, it doesn’t feel so strange. Kelly and the rest of the team putting together this fundraiser didn’t know how great their timing was. They didn’t know that September is Childhood Cancer Awareness Month. I didn’t know either until just recently. Awareness will help to encourage the community to engage in a very important part of the world. Our children. Some people find it uncomfortable to look at the cancer children on the commercials…I don’t blame them. But when it’s someone from your community, I think it feels a little more relevant. It’s a more intense realization. A video was necessary to make it real and not just hypothetical.

Scott and I found it quite difficult to recap our journey over the last 7 months. A video may seem easy for us to film. I mean we’ve journaled many entries and have had the opportunity to put our fears, loves, and understanding of this disease down in writing…why would talking about it to a camera be any different? After many takes and tries, Scott and I sent a long a series of videos (videos that most certainly needed editing) describing what leukemia is, the treatment of it, and how it has impacted our lives.

After revisiting this journey out loud, I almost felt weaker. Not weak because I haven’t handled things in a strong way. But it was the first time that I have felt the actual stress. I imagine it like endorphins protect us from pain…my dragon’s breath has protected me from the sense of weakness. But…we have been seriously stressed. It’s going to sound strange but I might have just noticed that.

Scott is an incredible rock. His roots reach the center of the Earth and if it weren’t for him I would have toppled over long ago. I am strong because of many people but especially Scott. That being said…I think it might be finally time we let ourselves actually grieve. Not the initial traumatic grief that we silently faced in the hospital or in those first few months of dealing with Maya’s drastic changes. I think it’s time to reflect on what is really happening in our hearts and minds now…and how we will continue to cope. Perhaps for our lifetime. For the past 7 months we have been in survival mode. We have been dealing with a crisis. And it is not sustainable.

I’ve been trying to make some changes. Drinking less wine (I most certainly used it as a coping mechanism…obviously not the best choice) and have started to work out again. I went to a gym (Kaia Fit) for the first time this week. It’s different enough from dance that I’m distracted. And after three days in a row I’m more sore than I have been in a long time. It isn’t the typical release that my body gets from dance. Laying it all out on the floor is therapeutic for me but my body and mind have needed movement. At the end of my first class I felt the absolutely crazy sensation of gritting my teeth, sweating, working so hard, pushing….and then crying. Yep. Totally started crying. I’ve cried while dancing. Even in a yoga class…but from squats and push-ups?!? Oh man. These are good changes.

It’s been a long 7 months. A somewhat dark and uncertain 7 months and it is incredible to me that we continue to receive amazing Love. I have always said this is a marathon but it’s easy to forget when your child isn’t the sick one. I truly feel blessed that we have continued support from so many people. Without the support we have from all of them…all of you, our dragon family would be among the rubble. We would not be flying and rebuilding our kingdom.

Maya is good. She’s eating, playing and learning. Lincoln is good too. He’s being a typical boy and testing like a toddler. As challenging as both the kids are, it’s so nice to see them act like regular kids most days. We have a new “nanny type” friend named Amy. She’s with the kids two days a week now and it has helped our family take a breather. Maya’s grandparents are priceless…but even they need a break once in a while.

Love is Life

Sept. 9, 2016 125pm (Sara)

I have started to feel the fog lifting a bit. It’s been just about 7 months since Maya’s diagnosis and our lives have changed in unbelievable ways but today… It actually feels a little normal now. Maybe when they say “it gets easier” they don’t mean the meds get easier to handle or the side effects subside…they mean we adapt. We accept. We grow as a family. We move beyond grieving and into a new normal. All the cleaning and isolation once seemed so daunting. It now is just a thing we do.

Today we are hanging out at the clinic – it’s just a thing we do now. We always arrive to friendly faces. They are our new friends here at the clinic and with each visit we all get to know each other more. In fact, even Dr. Salo is easier to talk to. It doesn’t feel so frightening to ask questions or her opinion. Dr. Salo’s schedule is slower today so we actually got a chance to chat with her about things that didn’t necessarily surround Maya entirely. It felt like a grown up conversation.

It’s the little things that make our lives feel “normal”. We now know what to expect with most of our visits. We know exactly where the great breakfast burritos are in the Sierra tower cafe. We know what time “the animals wake up” down at the gift shop (Maya eagerly waits for the giant stuffed animals to be placed out around 9am). We know where the snacks are in the nutrition room. Maya has her favorite chair that she often chooses to sit in while getting accessed. Today, I was so impressed with Maya…she sat in her own chair (all by herself) while Denise accessed her…and she didn’t even need to hold my hand. What a surreal feeling.

I look back at the last several weeks and what we have been able to do: amazing visits with family, birthdays, trips to farmers markets, bike rides, lake trips, new friends, growing, learning, laughing, loving. 7 months ago, I anticipated more days like the first couple months. But really we have been able to enjoy. Our lives are changed. We are changed…but we are far from broken.

The support our friends and family continue to share is incredible. All the turmoil in our country and world is tangible yet we continue to be on people’s minds, in their hearts and prayers. Thank you from the bottom of our hearts. We truly can’t wait to be Out In The Wild more often so we can share our gratitude with you all. Please know there isn’t a day that goes by that we don’t feel the love and support. If only there was something we can do to let you all know how much you mean to us.

Maya’s ANC is 1874 today. Normal liver and kidney function. Her platelets and hemoglobin are with in normal range and she is truly just perfect. A day at the lake is in order.

Love is life.

Sept 3, 2016 (Sara)

I have been following a young boy’s journey on Facebook. His name is Tyler. Tyler Armstrong. He’s 12. He is not necessarily “close” to me or my family physically but he has been fighting leukemia for 6 years. Maya’s fellow fighter, Alicia, and her amazing mommy, Heather, encouraged me to follow his journey. Alicia is treated in the same clinic. I don’t know their relationship but I sort of imagine he is their “Victoria”. A hero.

Well…he lost today. We all lost. While I was enjoying a day of high ANC by farmers market and a wine walk….another mother was hearing her son’s last breaths. A family had to say goodbye. I am no stranger to this. I feel it deeply.

There are no words. There is something so surreal when contemplating the “90-95%” cure rate when it comes to Acute Lymphoblastic Leukemia. My child has 90-95% survival rate because of sacrifices like this. Chances are Maya will continue to thrive …that it won’t take my child. But the reality is that it could. I am heartbroken for this family. For the community and the world. We need change in all the right places. Certainly more than 4% of cancer research money.

I ache for this family. I ache for other families that have had to sacrifice their own. Perhaps tonight I ache for my own family. It’s hard to witness pain like this without feeling the possibilities of reality.

I wish there was something I could do to make it better. I wish I didn’t feel like throwing up when considering the possibility of relapse for Maya. It’s amazing how life changes so quickly. How we think we know how to live and love but we really have no idea. How as a nation, a world, we fight each other when we have bigger evils in common. Let’s make it stop. I just want it to stop.

Please send some love, light, prayers (what ever you might have to give) to this family as they send their son off to transition to the next realm. He is our warrior of Love and I wish him and his family the best. Hug your family. Love is life.

Sept 1, 2016 (Scott)

Tuesday’s numbers were strong. Maya’s Hgb and platelets were solid, and with an ANC over 1100 we were able to move on to Interim Maintenance 2.

The dog days of summer are here and so is the start of a new fall semester. We see family and friends transforming their lives back to the demands of the season and working extra hard to soak up the remaining bits of summer. By the end of IM2 we’ll be well into fall and thinking carefully about what life can be like for the following 18 months or so of treatment.

IM2 is a relatively easy phase: monthly LP and chemo infusions every ten days. The IV doses escalate as you go and slowly increase risk of side effects like mouth sores from the methotrexate. Blood counts tend to be stable during this phase, so if Maya is feeling good we’ll take advantage of family visits and cautious outings.

We are humbled by the continued outpouring of support from all over our communities. The help, care, and love sustain our spirits through the weary moments. You all make us stronger for Maya. Thank you.