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September 22, 2018 (Scott)

September is Childhood Cancer Awareness Month. Today is September 22, 2018.  Five months have passed since the conclusion of Maya’s treatment for standard risk ALL. Her monthly labs look great, her port has been removed, and our scars are healing.

I don’t think I can tell you how grateful I am for the love and support my family has received. I am grateful for this life and for the chance to look beyond the hazards, to fix our vision on the beauty and strength waiting just beyond. The beauty and strength is in the people like you who share their courage to lift the spirit and guide the path of those who momentarily struggle. In that act, we can all be heroes. And we are forever grateful for our heroes. 

We will be closing our caring bridge site and continuing to post periodically on MayatheDragon.com. Please keep in touch. With love, thank you.

May 24th, 2018    (Scott)

Up at 4am and off to Renown for Maya’s port removal this morning. The procedure is scheduled for 730am.

It’s a short procedure, under thirty minutes, with two hours or so in recovery. We hope to be headed home by lunchtime.

Looking forward to celebrating “Aloha Chemo!” with you all on Saturday. More updates asap.

May 1st, 2018       (Scott)

Just over a week ago Maya took her last dose of chemotherapy medication. The last half-tablet of 6-Mercaptopurine went down in the presence of family and close friends, and the emotional weight of the moment was more than I expected– there was some cheering, a few high-fives, but mainly there were firm hugs and whispered expressions of gratitude. The reality of this transition was not lost on Maya who celebrated as happily as anyone. She has rejoiced in the diminishing medications since her last dose of Decadron went down more than a month ago.

It’s curious to me that neither Sara nor I have written much about that little celebration until now. There is a video to be shared, and there have been many texts and conversations, but the opportunity to really reflect has been delayed. My initial thought is that we’ve written many times in the past year or so about what the end of treatment will feel like, and now we’re taking the time to explore whether our new reality is anything like those dreams. I also think we’re exhausted, and a little stunned, by the idea that two years and two months could pass so quickly with such a variety of experiences and emotional extremes– then, with the quiet gulp of a final dose and a sly grin, the journey ends.

Of course, there’s much more to come, and to think that the past two-plus years is a story that begins and ends with a dose of chemotherapy would be to miss the best part. There’s a little person at the center of this– who began as a ferocious three year old and broke through the finish line a confident five year old. Her fire has burned brightly along the way– at times out of control and at times engulfing her in life, love, and growing well past the final dose of meds.

Wrapped around the center of the story is our little family whose strength has been maintained within the protective armor of our community and its immeasurable love and support. Sara and I count ourselves among the most fortunate people of all time to have been blessed with such unrelenting protection– friends and strangers alike have helped in myriad ways to ensure we never stumbled more than we had to. Friends, family, and neighbors moved our belongings from one house to another and made our new house a home before we’d even set foot inside the door. Whether it was money or time or food or freedom, whatever we needed was there through the enduring love and security of this community.

In the beginning we were told standard risk ALL treatment carries a 90+% chance of success. Marriages under these circumstances have a 25% chance of success. At first I thought the generosity we received was intended to save Maya’s life. Now I see that our people mobilized to save our whole family– that we might come through this as strong as we were before. I cannot imagine a more beautiful gift, and it is something Sara and I honor and will share with others for the rest of our lives.

Maya’s took her last doses of allopurinol and bactrim (non-chemo meds) last weekend. For a year she will have monthly lab checks, then every other month, then quarterly. For now she’s a ‘survivor’ and after five years will be deemed ‘cured.’ It will take years for her immune system to return to full strength, and we’ll still need to take some precautions. But these will be light compared to the bubble-life of 2016-17.

This week we are visiting Great-Grandma (Nona) in Sacramento. Nona’s house is always a place of calm and relaxation, and we love to visit almost as much as the kids do (Linco turned down stopping to get a sandwich in order to arrive sooner at Nona’s… that’s really saying something!) Yesterday we went to the zoo, rode the train and the carousel, and we took a trip through Fairytale Town to end the afternoon. The kids are great– carefree and fearless. The adults will take more time, but we’re moving in the same direction. 

Tomorrow we visit the Make-a Wish ‘Wishing Place’– one of just five in the whole world. Maya will be interviewed without parental interference to help give clarity and shape to the dreams in her heart and imagination. . . “I want to be… I want to meet… I want to visit… I want to have….”  And I can’t wait to hear what will come of this process– no doubt there will be magic.

May 26, 2018 is the date of our Aloha Chemo Carson City Party in the Shoe Tree Brewery parking lot. Food, music, beer, and fun for the whole family to celebrate the beauty of community and to BENEFIT the NORTHERN NEVADA CHILDREN’S CANCER FOUNDATION. We’ll send out more details (flyer) asap, but the party is planned 11am-4pm. Please come and play, support, or just share a high-five or two… everyone is invited. And thank you all for your enduring kindness and love.

March 5th, 2018         (Sara)

If a home’s fullness of Love was measured by the number of blankets it had…ours would be overwhelmingly full. Even before Maya was diagnosed, we had many many blankets. Brand new blankets from the store that I bought or that were given to us by friends and family; new hand made blankets and quilts made for us by wonderful cousins or Aunties, friends, parents and grandparents…and great-grandparents. I even have my old “bunny blanket” laying around. It is terribly shabby and so worn it is falling apart. I keep meaning to fix it but…well it gets bumped on the “todo” list. Maya has now taken it even though the bunnies on it have faded to an every so humble…ivory with a hint of bunny.

Then Maya was diagnosed with leukemia.

And our collection grew. The first time I felt “wrapped” during this journey was from a shawl my cousin gave me because she knew what it was like to spend hours bedside with her child in the hospital. We needed a new blanket at the Family House and my step brother brought us one that is now folded over my couch down stairs. It isn’t my favorite blanket but there is something extremely comforting about it. When we arrived home, even more blankets made their way to our home. More hand made quilts and knitted blankets made for Maya by our colleagues. Softy blankets small, medium, and large for all of us. Light blankets and heavy blankets. Blankets offered by strangers and by the closest to our family. It is truly amazing. And interesting. When we grieve and need help, we are given all sorts of gifts. And why not blankets? They are the perfect symbol of love.

I now see blankets as a literal and figurative perception of how much Love and warmth this little girl and our family have been given in this life. It is as if the number of blankets given to us was the God’s saying “Look at your friends and family wrap you in support, in Love, in light”. And we really have always felt it from the beginning of this journey. Not because every person who loves us gave us a blanket….but because we have SO many now that our ottoman is bursting with compassion. Our shelves are lined with Love, and our beds are covered in beauty and hard work.

We continue to cuddle up with any given blanket and ponder what we all have been through over the last two years. It feels incredible that we are closing in on the final weeks of treatment yet still need that cozy blanket to feel a little more safe. 

Maya has been okay. Today better than ever. Over the last few weeks we have struggled keeping her healthy. She ultimately needed a recent transfusion of IVIG (intravenous immune globbulins). It is a bottle of immune proteins from 200 people from regions all over the world and we just hope that at least one of those people had antibodies for what ever Maya is fighting. She mostly suffers from a cough but with that comes sleepless nights, ear infections that won’t go away, and an amazing amount of snot.

After an initial fear of reaction from the IVIG, we were happy to try the transfusion but only to have come out 2 weeks later….about the same. No worse but really not incredibly better. The cough is still hanging around but just not as frequent. I apologize for my non-optimistic tone. She’s probably way better but…well I’m just tired.

We are all moving along and really looking forward to Aloha Chemo celebrations and healing ceremonies which I will be sharing more details of later this week. Please save the date for a local celebration here in Carson on May 26th. Also, we would LOVE to see anyone who might need a vacation on Kauai, June 24th. We all need to heal.

Also – I, Sara, will be shaving my head on St. Patricks day. I am doing this for many reasons but I mostly to raise money for childhood cancer research through St. Baldricks. I’m also doing this to honor my daughter, to honor my best friend April, to honor women…and to honor myself. If I had skin to shed – I would. Maya and Lincoln have agreed to me doing this and while Scott is pretty sure (as I am too!) that Imma look pretty funky for a while – none of us are afraid of this. Maya didn’t have a choice to go bald – as most cancer victims. But I do. I’m nervous (and well maybe a little scared) but I am proud to model strength for my children. Let them see a women’s worth and a family’s love transcend hair and social norms. I just really hope my head is a least a little round.

Thank you for your continued love and support…and blankets. Keep your eye out for details of celebrations.

P.s…Lincoln is THREE! A lot has happened since our last update….sorry.
Love is Life
s

January 23, 2018       (Sara)

One night, as I tucked my children into bed, Maya needed to talk. There was a tone in her voice that made me feel like this was something that really needed to happen. Not just the typical chatter that children do to stall bedtime. We have talked about her condition many times. But as we all know, children need repetition in order to learn. As much as my heart ached during this discussion, and my stomach twinged while my palms sweat….I’m very happy I took the time to talk.

Maya: Mommy, I have to talk to you. I need to know how many times we have been to clinic.
Mommy: Oh wow….Im not really sure.
Maya: Well I need to know.
Mommy: Okay, well I could probably come up with a pretty good estimate some day. Will that due?
Maya: Yeah….Well….Mommy?
Mommy: Yeah?
Maya: How did I need chemo? Cuz….not all kids need chemo. Why?
Mommy: Oh. Ummm…well you need chemo because your white blood cells mutated into leukemia. Part of your blood changed and the chemo helps change your blood back to normal and keeps leukemia away.
Maya: What’s leukemia?
Mommy: it’s a form of cancer that makes it so your blood doesn’t work all that well.
Maya: cancer….do other people have cancer?
Mommy: Yes. Sadly, many other people have cancer.
Maya: What happens if you have cancer for very long.
Mommy: You get really sick.
Maya: How sick?
Mommy: Really really sick.
Maya: Do people die from cancer?
Mommy: Yeah….they do, baby. But NOT you.
Maya: Why not me?
Mommy: Because the doctor and nurses and a whole lotta scientists are saving your life. And you’re a dragon. You are so very strong.
Maya: Cancer. *sigh*….Cancer. Hmmmm…cancer.  Will I need chemo forever?
Mommy: No baby, not forever. We are almost to the end. Only a few more months of taking your 6mp.
Maya: Okay. I believe you.
Mommy: I love you with all my heart, infinity.

Dear universe and all the Gods….Please make it so. Please, please make this so.

1 more lumbar puncture with intrathecal methotrexate, 3 infusions of vincristine, 3 more weeks of steroid pulses, 12 more doses of oral methotrexate, 88 days, 3 hours, 18 minutes, 18…17…16…15 seconds till her last dose of chemo.
Love is Life.

January 4th, 2018         (Scott)

Maintenance is supposed to be the easy part. It’s described that way in comparison to the other phases of treatment. Things are supposed to be as close to normal as can be during these 18 months. But these are the things we are told by the people who haven’t lived the process day by day with a child who may or may not feel crummy and who may or may not have the vocabulary nor the confidence to tell us how things really are.

I wrote that about a year ago when Maya was just a few months into maintenance. It really is funny how some things change and some things don’t. Many of the issues we face one year later are different and most are much less severe. Maya’s constipation has been more manageable– though we’ve had sporadic issues and even gone to the nuclear option (Lactulose); her liver function has been consistently good since the inclusion of allopurinol. But many of the other concerns we have today are unchanged. We worry often about Maya’s hemoglobin level, her ANC being too low or too high, we worry about fevers and infections, and we worry that her biological experience of maintenance may be of lower quality because we’ve never been able to find the right balance of drugs to keep her neutrophil count in the right range. In the past few months she’s been everywhere from 200 to 4500.

On Tuesday the number was just over 2000. So, we continue to work toward the right balance of meds– a little more methotrexate each week, another quarter tab of 6mp (yes, quarter tab… ever try to cut an aspirin into quarters?). And maybe we’ll find that sweet spot that we sense is so close. Either way, April 21, 2018 is it– the meds stop… and whatever comes after that will start.

I realize that last bit sounds ominous, and there’s a part of me that is truly worried about it. I’m working on a way to think about the five years post-treatment that will take us to the real finish line– the one that reads, “CURED.” The best I have so far is that each day that passes, post-treatment, brings a slight reduction in the probability of relapse… each day will be just slightly less ominous than the one that came before.

But through all of this, before, during, after treatment there is Life. There is spirit in our little dragon, already strong and growing stronger as we go. There is family, there is learning, there is laughter, and there is Love. Sara and I struggle with strange and interesting schedules and dosages and symptoms, but more and more we simply struggle to raise two little humans as any parents would– the best we can at any given moment. With Maya just recently turned five and Lincoln almost three (though he claims he’s also going to be five in February), we are mainly occupied with the standard stuff– feed, wash, sleep, love, repeat… and then also, in the space between all that, try to plan a bit for the future.

This is our world of being a family. It was here when we started all this almost two years ago, it is here now, and it will continue beyond April 21st. This, I think, will be my bridge from treatment to non-treatment– my bridge from one day to the next if that’s what it takes. But it’s something I know I can count on in my heart, my partner, my family, my friends, and in my community. Soon enough we’ll celebrate a great milestone, but the truth is that milestone itself doesn’t matter a bit… it’s the people, watching that marker shrink into the distance, together carrying momentum and strength and good health and the dragon’s spirit ahead, which is the thing to celebrate.

Maya got her second-to-last lumbar puncture with chemo on Tuesday. She handled most everything well as usual– the access (i.e. needle to the chest) is still no big deal, but try to take those monitoring stickers off her ribs and you get to see all the dragon’s fire. Her labs looked fine that day– Hgb had come up bit since ten days earlier, ANC was still high but we’re all fighting viruses this time of year. We made some slight adjustments in meds and added in an antibiotic to treat an ongoing ear infection as well.

Because of the nasty stuff going around this time of year and the increased reports of flu in our area, we’ve decided to keep the kids out of school as much as possible for a few weeks. This is much harder on our schedules– not to mention the grandparents who we lean on so heavily (we do feed them pretty well every now and then– thank you, Bapas). We hope this will allow the kids to get over what they’re currently fighting and keep them from piling on anything new. Thankfully, Maya and Lincoln continue to be great playmates and best friends– they have their sibling spats, but more often they laugh and create and explore together.

Before I finish, I need to add that my wife, Sara, continues to get more and more awesome all the time. You may not know this, but she won ‘Wife of the Year’ for 2017, and she’s already the favorite for 2018! She threw one heck of a 40th birthday party for me, which included both go-cart racing and scotch (no, not at the same time). And she balances all the planning, amidst all the chaos, with grace and strength. She’s my muse and my best friend. 

Thank you all for your continued support. We wish you all the best year yet in 2018!

December 15th, 2017      (Sara)

Five years ago today, I gave birth to The Dragon. When you ask Maya how old she is today, she will likely smile and lift her whole hand. She will hold it high with all her fingers spread out as wide as she can spread them. Today, she is one full hand. Last year on this day, I reminisced about Maya’s birth story (if you’d like, you can re-read it here). I would be happy to re-live that day over and over for the rest of my days. It was a beautiful (yet challenging) day. From the moment the dragon was born, she challenged us in ways we never knew were possible. She has proven to be an incredibly smart, strong, funny, happy, creative, inspiring, fierce, loving, empathetic, and magical little soul. I can’t imagine my life without her and while I wish I didn’t have to be part of the “cancer family club”….I am proud to be her mother. And proud to be her friend.

Today, and for many weeks as the eve of my child’s 5th birthday crept into reality, I have been ruminating the idea of having a 5 year old. I have many friends and family members with children that have all been 5 years old. I was once 5. Scott was once 5. My incredible 91 year old grandmother was once 5. I mention this because turning 5 years old, in this country, is a seemingly underrated milestone. One that when I was pregnant or even pondering having a child, seemed inevitable. We all turn 5 years old. That is unless, we don’t. Because I also, unfortunately, have friends (new and old) that have children that are 5 and others that are now pictures on the wall. Memories in their hearts. Souls that never made it to a whole hand. At least not in this world. Today I would like to pay tribute and respect to those souls that don’t make it to five.

I have been mourning for a friend I lost just after Thanksgiving. My little Dalia was only 7 months old (almost) and she wasn’t supposed to die. It was a terrible accident that led to her death and while she had a very complicated genetic condition, she was winning. I think that is the toughest piece of her story for me to heal from. She was doing well but things went sideways. Anyways, she touched me deeply and I have thought about and cried for her family every day since. In my line of work, I don’t typically lose children like this but it seems as though this year has been one of pain. I feel this cycle of pain and am ready for it to move on. Having the opportunity to meet, hold, love, and help children like Dalia and my little Wren make me a stronger and better human and mommy. I was told little Dalia’s service was the day we celebrate Maya’s 5th birthday. I felt guilty and sick to my stomach at the idea of having a party for my child when another mother is grieving her loss. But because I love Dalia, and her mother, I changed my mind and now feel unbelievably grateful to celebrate my child’s 5 year birthday. I take nothing for granted and am blessed to have known this family.

I want to share another story with you. A few years ago, well before Maya was diagnosed with cancer, I saw a video produced by a non-profit called LifeBouy. This company’s goal is to decrease the severity of illness due to insufficient hand washing. They help to educate (and offer soap and clean water) to countries and populations that are lacking. It is incredible how many children we lose because they can’t sufficiently wash their hands. This video affected me in a way that I can’t really explain. It is a beautiful video and a wonderful celebration. Please take 3 minutes to watch it when you can. It made me cry even before my child almost died (a few times) before the age of 5. But here we are. We made it to one full had. She made it. And she truly is thriving.  

I express all this pain to get it off my chest not to put the burden on you. I don’t want to share pain but sometimes I feel like if I talk about it, it will ease. I have been sad lately but still find time to smile. Our family has also been battling a really gnarly community virus. Scott and I were sick for weeks and the kids too. Maya is now on 10 days of antibiotics for bilateral ear infections. As soon as I think we are getting to the tail end of this bug, we get knocked down again. I’m not sure it is possible for me to wash my hands any more than I do…but I will try! The good news is that Maya’s numbers have been decent enough and she hasn’t had a fever (knock on wood).

The Dragon continues to fly high and never ceases to amaze Scott and I. She continues on all chemo medications at this time and is actually tolerating them well…I think. We had a wonderful weekend celebration for both Scott and Maya. Friends, family, fun, and SNOW (well at least in our living room)! It was a magical break and we all enjoyed some fun times. As we head into the Yuletide we honor this season and cycle of pain and coldness and are hopeful that the next year will bring more joy, more laughter, more light, more health, more happiness, more Love and more Life. Here’s to a One Full Hand of life and to many many many many hand fulls more. 
Love is Life.

November 20, 2017      (Sara)

I naturally get prompted to write an update after I write a super long text message to a friend or family member about Maya’s status. There is some sort of threshold I cross that elicits communication with the most amazing support system. Plus, I am grateful. For so much I am grateful and this week seems like an appropriate time to express myself.

Two weeks ago we had yet another chemo clinic. We are in the middle of cycle 5 and while it wasn’t a lumbar puncture, Maya actually had a rough week. Her ANC was found to be pretty high for the 3rd time in a row (ANC of close to 3000) and while that doesn’t necessarily make her feel unwell, it always makes us nervous. Aside from a increase in 6mp, the week was comprised of the regular cocktail we give Maya to stave off the cancer. It continues to include a week of decadron (steroids twice daily), zantac (to help with stomach upset from decadron), allopurinol (to enable her to metabolize the 6mp), methotrexate, bactrim (to keep a specific pneumonia at bay), miralax (you all know why), CALM (magnesium), uhhhh…oh yeah and 6mp at a slightly increased dose.

Maya spent the week at school and it was a pleasant distraction for her but when she was able to come home and melt back into her usual state, her smiles were less consistent. I tend to blame the steroids and deep down know that she will come out of this fog but there is always some fear triggered. I get tense with the idea that she will get stuck there. I exhale each month when she is done with decadron. It is as though I have watched her stuck at the bottom of a pool struggling to breath. Then I see her plant her two feet to the ground, bend her knees and push up back up for air. I see the bubbles flowing from her nostrils the air fill her lungs as she inhales dramatically. Then I see the smile come back full force. This happened. Of course it did…but about day 4 of steroids I worried.

Since then, she has been great. We checked mid month labs today because we increased Maya’s 6mp two weeks ago. Today her ANC is 750. It is quite a drop for the almost 3000 two weeks ago but we are relieved to see her “in the zone” for now. I spoke with DrZ and he made me giggle with a comment that went like “why does your kid love roller coasters so much? Can’t she like the teacups?”. I had to reply with….she’s just not the “teacup kidda kid, doc.”

All of her other labs are great. Well as great as we can expect for our chemo kid. Hemoglobin 11.1, platelets at 248, white blood cells at 1.6. Her metabolic panel and electrolytes are beautiful. Though I know she could be continuing to drop, I am grateful for this news today. We will monitor for further suppression of her bone marrow and perhaps check again next week. Or not. All in all, this was welcome news for us today.

We will celebrate the Thanksgiving Holiday as a small group of family and friends like family. I will hold my glass high and state I am Thankful for so much. Today, I am especially grateful for the doctors in my life. The doctor I am blessed to call colleague; Dr Powell inspires me in ways that I will never forget. He treats those that work with him as friends and the families he helps as peers. His way with words is magical and I hope to have his grace one day when dealing with others one day. Thank you. I am grateful for the doctors that are caring for my grandmother, and parents, and family. I am so grateful and blessed to have the doctors and nurses that are caring for my children. Thank you all. I am grateful for the health of my family and friends. For the beautiful home I live in with the perfect little family. I am grateful for my dog, Pelei. I am grateful for my job. For my own health. My own strength. I am grateful I live where I live and that I can do what I do. I am grateful that I am surrounded by Love all most all of the time. Finally, I am grateful for the season’s change. While I hold on to this artificial blonde hair, bare feet, and aloha spirit…I welcome late fall and winter. For Spring Time will bring our next journey. Our road to Survivorship. 

I send Love, light and dragon’s breathe to those that are battling. Not just with cancer but with loss. My dear friends that have lost the unimaginable, I hurt for you and hope you find peace soon. Thank you all for your continued strength and love. We would not be as strong with out all of you.

Love is Life.
s