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About the Author

Scott and Sara Morrison

Into The Great Wide Open

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.

And Then There Were Five

April 16th, 2018        (Sara)

I just gave Maya her 6th to last dose of oral chemotherapy. 5 more doses as of tonight. I don’t think I am really able to communicate my feelings. I’m happy. I’m scared…like terrified. I’m relieved. I’m sorrowful. I’m skittish. I’m trying to figure all of this out still. 799 days it will have been. But I am still trying to wrap my brain around the fact my daughter had cancer. She was 3. I mean really….she was 3. How on earth does this happen? But “its so rare”. Yet, here we are.

When people ask me if I’m “so excited”?…all I can say is…”I think so”. I guess I am. It mostly feels like we are about to jump off a gigantic cliff into the darkness. So, I suppose I’m as excited to do this as I would be to…Oh I don’t know, jump off a gigantic cliff into the darkness?

Sometimes I feel bad for not feeling more optimistic. I feel like that is my job. Like I’m supposed to be that person who is so happy and excited and optimistic and feel like this is the most amazing feat we have ever over come and gosh darn it, we are golden. But I don’t. When the “impossible” hits your world…twice…it doesn’t feel secure to just move on. When we lost April, I was a teenager. It was, in all honesty, the worst thing I could imagine going through. Even worse than my daughters diagnosis (well…once I knew it was treatable). I lost my best friend. My sister. My soul mate. My person. And I was 15. I mean really….what else could be as dramatic. No one could write that story. No one makes that shit up. Not even me. I watched her die. It was more painful than any therapist could work me though. At least at that point. So when twenty years later my 3 year old daughter is diagnosed with cancer….what am I supposed to hold on to? The Gods? The God? Mother Earth? Science? Humans? Me? Her? Love? Yeah Love. That is the only thing that has been real for me in this life. Love.

In the last twenty years I have found so many friends, loves, and people to, not replace her, but to fill me with support. With love and light and hope. I have no idea how I have earned this honor but I feel it. I witness it and I honor all this support in a way I don’t think I can ever express. I am grateful and blessed. And I feel stronger because of you.

Well back to five more days. Maya has five more days of chemo. She will take her last dose this Saturday. We are excited to have Gramma Bella here with us and perhaps we will have some sort of festivities. She will still have to have an empty stomach until 9pm-ish on Saturday but Sunday…Sunday is a new day. And maybe we can even move Irene back in (she’s our 11 year old plumeria tree that has over taken Megan’s home because we haven’t been “allowed” house plants…and we miss her).

Moving on feel doable because of our friend Alicia Anzlec The Unicorn. Some of you might remember that she was diagnosed just the week before Maya. Her mother, Heather, and I have become great friends (thank you to my cousin Tami for introducing us!)….well only virtually but it is on my bucket list to hug that woman tight soon. Alicia took her last does of chemo on 4/12 this year. She is strong and calm and her family gives me hope that I can find and feel the joy once April 22nd comes.

Now that we are here…I want to make sure every one knows that we are having a party for Maya and for our warriors of Love in Carson City (in addition to our healing ceremony on Hanalei Bay on 6/24…i suppose flood pending – please send love to the islands as they as they struggle to tolerate all this moisture). Maya’s journey with chemotherapy ends on April 21st, 2018. This marks the end of a 799 day battle for this dragon, this family…and for you all. The strong love, light, prayers and all sorts of lift offered to us through these years is tangible and invaluable. We know this takes energy from those that offer it to us so PLEASE come and celebrate with us. And join us as we start to heal.

In addition to celebrating Maya’s end of treatment, we would like to celebrate our people. There just isn’t a big enough “thank you card” to truly express our gratitude. We have also decided to raise money for the Northern Nevada Children’s Cancer Foundation. NNCCF is more than just monetary support for families trudging through this mud. It is a safe place to visit, experiences for our kids when they are isolated (or not), mental health resources, advice and hugs. Great hugs.

Maya’s Aloha Chemo, Mainland is at Shoe Tree Brewery, here in Carson City, on May 26th from 11am to 5pm. We will have a bounce house, DJ, Food (non host), raffle, Corn Hole tournament (uhhh…Butler will you be the Ref?), maybe even some bell ringing, AND some incredible beer and beverages. The master minds of Shoe Tree Brewery are actually working on a special brew in honor of Maya The Dragon. Gotta come try!

The party is at 11am but a dear friend will be leading us through a healing ceremony prior to the party. There will also be an opportunity for some healing yoga that morning as well. Please get in touch with me personally if you are interested in the healing ceremony and/or the yoga. This will be very personal but any one who might need some healing is welcome to join. I will give out details for this.

Thank you for your continued support. I just don’t know how to thank everyone enough.

Love is Life.
s

Last LP

March 28th, 2018     (Scott)  

On Monday (March 26th) we visited the infusion center for Maya’s final lumbar puncture and chemo infusion. This was a milestone that Sara and I didn’t fully recognize until we arrived that morning– the infusion center staff had set up a princess-party for Maya complete with Anna/Elsa balloons, gifts, and a cake! This amazing group of professionals has been with us since March 2016, and their care and compassion has made our frequent trips to Renown feel like visits to see family and friends as much as monitoring and treatment. We cannot thank them enough for cultivating an environment of comfort and healing within our journey of anxiety and uncertainty. 

Over the next three days, Maya will finish her last pulse of Decadron (steroid), and over the next three weeks she’ll continue to take her daily chemo med (oral 6mp). Her end date of treatment is April 21, 2018. And then we monitor and assess and get our heads straight about what’s next.

For the past 18 months or so, Maya has been in the ‘maintenance’ phase of treatment, and for nearly the entire time we’ve struggled to find the right dose of meds to maintain her numbers in the right range (ANC 750-1500). During this time we’ve seen her ANC anywhere from 200 to 4500, and her hemoglobin has been anywhere from 5.7 (transfusion low) to 11. While this is a moving target for any patient, and especially for those who are growing and changing so rapidly, Maya presented a unique challenge. Early in maintenance we began including allopurinol in her daily regimen which both helped and complicated the cocktail. I am happy to report that in the past two or three months, Maya’s numbers have slowly and consistently settled into the desired ranges with Monday’s numbers being better than almost any other point in treatment- ANC 1640, Hgb 10.3, Plt 300+. It’s funny that her system finally would start to cooperate right at the very end of treatment, but you know what they say– it’s not how you start, it’s how you finish. As Dr. Z commented, “She’s really stuck the landing.”

We are looking ahead to scheduling Maya’s port removal soon and enjoying many upcoming celebrations (MAY 26 in Carson @Shoetree Brewery!… there will be a bounce house!)

We look forward to seeing you all at some point this summer and thanking you in person for your love and support.

Thank you.

Blankets

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

A Cancer Kid’s Question

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.

A New Year

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!

One Full Hand

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.

Grateful

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

7th Inning Stretch

October 16, 2017     (Sara)

Over the last month, there have been some really great times followed by some really not-so-great times. And visa versa. Not just with this little family but pretty much the whole world, I suppose. I know that we live on this incredible sphere and we shouldn’t be surprised with cycles but man sometimes taking the good with the bad can be difficult. There are plenty of events that have proven life is tragic that I could write about this evening but I don’t think I have the expertise to do so. What I can write about though…is me.

I find it fascinating when I enter a deep and meaningful conversation with a friend, who is going through some intense struggle, with some sort of wisdom and insight…then end up coming out the other end of the conversation bawling because I needed to hear my exact words. Communication can be so serendipitous and altering that way. I found myself saying things like “when you feel anxious, try to change you mind” and “you have to forgive yourself for feeling this way…”. Those are just examples of the words that really helped me. But turns out, I had a whole conversation of really good advice. Who knew? But how can I not support myself the same way I do a friend? I used to be so in touch with my own body, mind, and spirit but have felt so disconnected for so many months now. I know this is typical. I know that when a family goes through trauma like ours has, that this sort of disconnect and anxiety can be expected. But I still don’t know why it takes me tears with a friend to listen to myself. 

I truly have the best support system and while my days have been a bit more heavy than light, I feel supported constantly. I feel supported by my friends, parents, husband, family, nurses, and even the doctors in our lives. Oh, and Pelei, our dog. She is my buddy, and gives me kisses more so now than ever in the past. I make that statement about support because I never want anyone to think I feel alone. I don’t. In my darkest hours, it is YOU that gets me through them. When I feel anxious or fearful, I think of all the people praying that I don’t feel anxious and fearful. You truly are the best people on this Earth. I’m fine. I really am. I told Megs and Gen that I’m waiting for this level of anxiety to feel normal. At this point it still feels uncomfortable but I don’t see it diminishing anytime soon…I guess I’ll still wait.  

As for Maya. She just came off of a 9 day bout of constipation. She had her quarterly spinal tap with intrathecal Methotrexate one week ago and since then has been a bit of a challenge. She went into the procedure with grace and woke up a….well a dragon. Poor Nurse Lauren got a front row seat to Maya’s Fury and at that moment completely understood why we call her Maya The dragon. When Maya is constipated, her behavior is extremely challenging. I don’t blame her. When I haven’t pooped for even just a day, I can be pretty grumpy. Her legs hurt quite a bit more than usual this month and I’m not sure if that is the extra activity that she has been doing at school or the chemo. I DO know that the chemo does not help Maya poop and that is a challenge I cannot wait to eradicate from our lives. The poor girl had more bowel care (laxatives and stimulants) than ever and she still just couldn’t….let it go. She would have (let it go) if there wasn’t the complete understanding and trauma of what her little butt hole would feel like during and after. Even as an adult it is hard to talk yourself into crapping out a rock and I just feel awful that I have to coach my 4 year old into doing exactly that. But she did it as I helped her.  And she’s okay now. We are all okay now.

Maya’s ANC is 2100. Of course this is too high, but she hasn’t been one to chill in the sweet spot. We will increase her oral methotrexate this week in hopes it will deplete some of her immunity without crashing her bone marrow. We’ll check labs again in one week. It isn’t ideal but at least she will get to return to school this week (after clearing all that bowel care she gave her). And even through the fits of dragon screams, tears, mean words, and sleepless nights…she sometimes seems very happy. At least I think. I’m always so impressed how she bounces back from weeks like these and turns into the happy-go-lucky kid I remember.

For Scott and I, the stress ebbs and flows. I admit if feels like it flows more than ebbs but we have each other and we take wins when we can. And we do find time to enjoy. I had a wonderful birthday weekend (at the end of September) with an outdoor movie night with the kids and an AMAZING Janet Jackson concert with my two best girls, Megan and Genessa. The next weekend, Scott and I flew to LA to root for our DODGERS in the playoffs. We flew into Burbank and 24 hours later flew home. It was short and so sweet to take home a WIN of our boys in blue. I have always been a fan of “life’s simple pleasures” but perhaps never as intensely as recently. 

We might have several more months of treatment but one day we will get to the 7th inning stretch. The break in the game when we’ll get to stand up, sing out, and root root root for the home team (us!). And we will then move on to the next inning. And then we will win. It is right around the corner…I can just feel it. I have to trust it is there.

Take care, stay safe, eat your veggies, and smile.
Love is Life. 

Here We Are

I have recently run into several people, whether it be at work, the store, the hair salon, or even a local fundraiser for a fellow community cancer family, that have asked about Maya. Some times the days go by and I don’t realize how long it has been since I have written an update…and I know I should. For both you and for me. Mostly because I know people want to know how The Dragon has been and what she might be up to. And also for me because I know it helps me to cope with all this. I have, yet again, found my self silent lately because I really just don’t have words to write. Certainly no beautiful and inspiring words.

But…it has been long enough that I will offer an update…or at least some words.

Nothing terrible has happened and we have, some how, stayed out of the PICU (knock on wood). The kids have been “grounded” in a sense to the home for a couple of weeks now and everyone is antsy but we carry on with our day to day relying on our amazing retired parents that make time to hang out with our wild kids so that I can continue to work a few days a week. We also rely on the invaluable friends that are family who will drop anything and everything for us if we have a last minute meeting or some random thing that pops up….if they are feeling 100%, of course. While we have missed (or will miss) some fun things, we made it to my best friend’s birthday dinner (Happy Birthday Megan!) and some other fun things. Come what may, we have managed our lives the best we can. And in my opinion, I find that remarkable.

So, as you may know, Maya (AKA FireFlash) spent a week at school before we had to pull her out. She then went back for two days after finding out her ANC was 900. The following week (last week) her ANC was 442. Out of school once again. It feels daunting to keep up with all this so to write an update with every “to and fro”…I just can’t.

Last week, when her ANC was 442, the protocol would have been to hold her chemo. We had just come off of a chemo hold so the doc was hesitant to hold again. I feel that I need to remind us all that the more chemo holds…the more chance of relapse. So we discussed a slightly lower dose of 6MP, the continuance of Methotrexate, allopurinol, and Decadron…and off we left the clinic. The doctor continues with the opinion that she is still highly sensitive to the 6mp and that this is not looking like relapse…and I hold on to that little nugget of information as tight as scales hold on to a fish.

A while back I asked the doc if we should just surrender to weekly lab checks but Jake (DrZ) was optimistic that we could likely manage with bi-weekly checks….hah, we all know how things change. Back to the clinic we went today (a week later). Maya, Lincoln and I made it to the clinic (both kids in medical masks and a cape because Maya can’t do anything that Linc doesn’t do…or wear…or say…or eat…or lick…or love). We got labs drawn and Maya got to show off her Strong and Calm skills as the 3/4 inch 22 gage needle gets stabbed into her chest with blood coming out of a noodle. Lincoln wasn’t scared. He watched with slight concern but held the trust that she was fine. At the end, he requested to help invert the tubes of warm blood for Denise to take to the lab. It was a nice outing. 

Usually Denise will call with the labs but I unusually got a text from Dr.Z that started out with “Maya is going to give me a heart attack”. It then went on to tell me how amazing her labs were perfect aside from her ANC of….2100. He said “we will discuss”. Oh my…this child. Oscillating between neutropenia and too high. I can’t keep up. We all expected her numbers to have depleted further since once we started the 6MP again she dropped to 442…then we kept going with the meds. Is it that she just got off a week of Decadron (the steroid that can artificially inflate her ANC)? Is it another virus? Is it some other random reason? We just don’t know. But yeah…heart attack….or at least some hypertension.

We will have a conversation with Dr. Z soon. Usually we would have spoken by this evening but I didn’t want to text him and since her ANC is high enough, I have chosen to return my kids to school with out asking. School and “why the hell does my kid keep doing this?” is really my only questions for him at this point. He did mentioned we will continue with the same dose of chemo but I thought I would give him a night to think about a plan. I honestly have no idea and reality is, he might not either.

What I do know is that he is saving our kid’s life….and way too many other kids’ lives too. It breaks my heat to know how many families are going through this nightmare. And for some, their nightmare never ends. Scott and I were able to go to the Shoe Tree Brewery’s fundraiser for Iliana Avila’s family yesterday. Iliana (she is 8) was recently diagnosed with a brain tumor and the prognosis and treatment sound (and feel) way too familiar to my best friend April’s diagnosis…and prognosis. I don’t think it is a glioblastoma but something that has her on her wish trip as soon as possible and her family at her side soaking in every moment and memory possible. So when thinking about our situation, it feels okay. We are okay and life isn’t all that bad. My dark hours in the night aren’t as dark as Iliana’s moma’s…at least I don’t imagine they are. But maybe I selfishly don’t want to image her’s. We have our children at home. And while Maya might not be the healthiest, our children get to live a life of a child. They are learning, eating, drawing, singing, dancing, laughing, and loving. And for that, I am grateful. So amazingly grateful.      

I am also grateful for My Love. More and more with each day. He is incredibly busy at work…and killin’ it on little sleep and more stress than I wish on an enemy. He makes me proud and while we are in our “thirty somethings”…and maybe closer to forty than thirty…he makes me love him deeper than ever.  I get butterflies thinking about the first days we met and how exciting it is to fall in love. Then I get this amazing sense of rapture as I experience the idea of how he is mine. And I am his. This life hasn’t been the easiest (and honestly, I don’t think any life is) but he makes me trust it is possible to find the easiness. He makes believe that we will find our beach again and those days of laughing while drinking coffee with no cares in the world still exist for us. I trust they do. And I trust we will get our Maya the Dragon there too.

Thank you again for the continued support. We don’t have an exact plan for now but my plan…is to let my kids go to school tomorrow. And hopefully the next day. And the next. And next.

Love is Life.
s