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Twenty Years Ago

December 31, 2016 9:30am (Sara)

Twenty years ago, I was saying a tough Good Bye. I was grieving with many friends and family as we lost our April. She was my childhood best friend. She and I met at a babysitter’s and danced for years after that; thankfully our Mom’s were fast friends… because we were attached at the hip for approximately 11 years.

Not long enough.

As with this journey, twenty years ago my coping and grieving was supported with journalling…it was just much more private. My words are deep in a drawer, hand written on tear soaked pages. Twenty years is still too soon to revisit those words but I am certain I was not able to express my feelings like I am today. I was 15 years old and my world was ending. I was certain of it.

April was diagnosed with a brain tumor in June of 1996. It was a glioblastoma – very fast growing and her prognosis was not good. I’m sure I don’t know the whole story but the 15 year old in me was not taking her “6 months” as truth. While I had some friends, teachers and others recommending I “let her go”, I was grateful to have my parents, close friends, and April’s parents understand that “letting her go” was not about to happen. When, in November, her tumor had shrunk a little – it was one of the best days of my life up until that point. And when she was sent home on Hospice…I didn’t know (nor did I care) what Hospice was…she was going home! I had faith until the moment I could no longer deny that she was leaving me. And I don’t regret that one bit. Holding on was the best thing I could do. After all…there has been plenty of time to “let go” once she was actually gone.
April’s struggle started at the beginning but she exemplified a Dragon’s fight. She was not a child with no inhibitions or insecurities. She was a beautiful teenager. Her body started to change almost immediately. When thinking back, the effects of steroids and chemo were so much more severe for April than Maya. Maybe April had different coping and adjusting skills because she was 14 years old vs 3….but April had the more complicated parts of life to deal with. She was hurting, changing, dealing, struggling…she was dying. And she knew it.

There is a Death Cab For Cutie song that has lyrics in it – “love is watching someone die”. I didn’t hear this song until years after April was gone but no song has ever stabbed me in the heart like that song. Watching April go through this experience was one that I made me who I am. I did very poorly in school that year. I was a sophomore in highschool and rarely did I attend the amount of classes I needed – I don’t really know how I got out of making them up but the lessons I learned out of the class were far more important than what I would have had in class. I would attend April’s OT therapy sessions or hang with her in the hospital. We would have support sessions with friends and I had a boyfriend who was very supportive and helped me vent when necessary. My friends and teachers at the dance studio were life savers. April touched so many lives with her smile. Her laugh. Her beauty, kindness, and incredible soul that there was no lack of love and support for those who were suffering.
At 15 years old, I was definitely conflicted. I had the angst and struggle with ego while fear, sadness, and empathy for my bestfriend hovered every moment. People would ask how I was doing and while my journals likely prove I was suffering and struggling, I was angry that people would ask me that. I wanted to shout “it isn’t about me!”. Yet when in a room by myself…I felt like I was also dying. And part of me did. I shed a layer of skin I will never get back.
When Maya was diagnosed, I heard so much of “I can’t believe this is happening again” or “I am so sorry you have to deal with this again”. April’s story is a different story. I don’t feel like this is an “again” type of thing. This is such a different experience. One that will change me again. Another layer of skin is shedding. But aren’t we always shedding? Everyone has struggles and battles. We all lose. We all win. I just hope we all laugh at times too.
I can’t imagine the universe would reunite April and I in this same life but…part of me feels April in Maya. At least her strength and perseverance. Or maybe I continue to feel her within my self. Next to me always.

April died on January 1st around 1am. She had been in a coma since before Christmas and one might have argued that we lost her then but…again – I wasn’t letting go until I had to. And then I did. Because I had to. So I did. I let her go. We always had a party on New Years. She LOVED to watch the ball fall in New York or wherever it may be falling. When it was obvious to Aunt Katie and Uncle Norris (her parents) she was leaving – they called me up to her house. I went in and crawled in bed with her. I left mascara marks on her bed sheets. I remember rubbing her hand that was wearing the butterfly “best friends ring” that trio’ed mine and Genessa’s. I held her for a while before I had to leave. I have no idea how long that was. As I left…I realized it was raining. I’m not sure if it was raining before I got there but it was raining when I left. It rained…actually it poured…all night the sky weeped for our world. It rained so much that night that my dad had to wake us up at 5am to help with sandbags to prevent flooding. I mean really…why not cause a little drama with your lift off April? It was a night that is painful to remember but that I will remember for all of my time.

Twenty years ago now and my heart still wants to call you on the phone. I miss you like I did back then and I ache to hear your laugh. Today you would probably be a mommy like me. You’d be such a fun and great Mommy and Auntie to my children. It has been most difficult when things are great. When my life has been awesome, I miss you most. I’ll try to celebrate you tonight rather than mourn as I usually do. That gets easier with the years but I’d be lying if I said it was possible. I see your dance in the clouds, your eyes in the stars, your smile in the moon, your breath in the wind, your heart in every daisy I spot, and your energy is surrounding me with every speck of pollen from every flower on Earth. You’re with me always. I love you with all my heart, infinity.
Happy New Year friends and family. May this year be our best year yet. May our losses feel like wins. Our tears from laughter be more abundant than those of sadness or fear. May 2017 carry a beautiful shift of energy for our world. One that leads to unexpected happiness and progression for the better. May we all feel loved and safe. And May Childhood Cancer Research continue to thrive and one day lead to eradication of suffering children due to random bad luck.

Love is Life.


Dec 21, 2016 10:08pm (Scott)

Today we started our third month of maintenance and another five days of steroids. Sara and I are getting used to the symptoms now–extra sensitivity, enhanced appetite, sleeplessness and sleepiness. These five days will be an adventure, but we’ll all be together with the holiday cheer as a welcome cushion.

Today Maya got another dose of vincristine, oral methotrexate, decadron, and sometime later in the evening she will have her her daily ml of 6-mp. She handles taking all these meds like a champ and rarely complains. Bowel care becomes a special concern when layering all these drugs together, so we often give miralax and colace (which is just awful… imagine grapefruit juice and baking soda shaken together with dish soap and some cheap scotch).
It would be easy, I think, to let all these procedures and medications, their schedules and their side effects take center stage in your life. But Maya moves past them like mile markers, focusing instead on the experiences with the people that color her daily life.
There’s power in community, and it isn’t just the security of the helping hand. There’s power in seeing those you trust and admire work and dream and achieve–power in wanting to be part of the strength that allows for achievement. There’s power in continually meeting new friends and families who overcome challenges in the same way and bond together to improve the lives of those around them.
Today we met a young woman named Marin who, along with her brother, had decided to donate some of their own prized possessions to the kids at Renown. Maya received a baby Rapunzel doll (she’s sleeping with it next to me as I type) and a treasured princess book which will be carefully placed in the ‘library’ next to her bed. It’s inspiring to see kids exploring the idea that their most valued possessions might be even more fulfilling in the hands of others. Thank you, Marin, for taking this step. In doing so you expand your community, strengthen yourself, and strengthen those around you.
Tonight the WNC Community said goodbye to a dear friend, Prof. Renee Magrini, who passed away on December 8th after a long, courageous battle with cancer. Renee was a very private person, but she made strong connections with people, and she empowered students (including Sara) to strive for their goals in the sciences. Renee reached out to me early in Maya’s treatment encouraging me to embrace the support groups at the children’s hospital. She said, “It’s hard to explain, but if you go, you will see that it will make a big difference to talk to “people just like me”.  It will make you stronger to help [Maya] through the road ahead.”
It’s about the people–Renee knew that, and Maya seems to understand it too. Thank you all for being there–for being a community with so much to celebrate. Warmest of holiday wishes, and merry Christmas to all.
Thank you.


December 15th, 2016 (Sara)

Yesterday, or any day between June 15 and yesterday, if you were to ask Maya how old is was she’d say “three and a half”. It would take mommy or daddy to chime in to correct “she’ll be four tomorrow”. Today though…she is a solid “FOUR”. The dragon was born four years ago this morning. After some minor complications, oxygen needs, chest xray, iv antibiotics…and approximately 12 hours she was finally on my chest and things looked like they were going to be okay and didn’t need a trip to the NICU.

I had a beautiful pregnancy…played everything by the book…took birthing classes, researched, mediated, ate the best foods (duh, Registered Dietitian here). Gained perfect amount of weight. Taught dance till 48 hours before I went into labor. Studied for school. Took a final exam (early) just 36 hours before she was born (Thank you Dr. Ashley). Prepared intensely with Scott for a natural child birth. Survived a 100% natural child birth. I wanted to be sure the baby didn’t have any medicine in her that might make her groggy so she could find the breast and start suckling right away. Everything was going to be smooth. Right. I mean I knew having a baby was going to hurt. I have a high physical pain threshold, pain control was not a fear of mine. Scott and I are a great team. We had confidence we could do this. And we did.

After laboring for 8 hours at home and questioning I was even in labor (thank you again Nikki Mitchell for helping me catch a clue), my water broke and we were off to Carson Tahoe Hospital. Arriving at a disappointing 3 cm dilated I had to stay since my water was broken.

After another 9 hours of more severe labor, Maya was born: 4:55am. She was the most beautiful baby one could lay eyes on. Wait. Is she supposed to be that purple? Shouldn’t she be screaming or something? She doesn’t seem to be moving. Uhhhh…..maybe if your rub her a little harder she’ll wake up. She sleeping? I don’t mind a lazy baby. Not sleeping. Probably not sleeping. Okay just rub her more. I’ve seen that in the 100 videos I watched. Suction? Suction more. Suction more please. Come on baby girl. BREATHE! I looked at Scott and I have never seen him so white. I hope I never have to again. While I’m 0-2 at having my OBGYN deliver my babies, I’m grateful for Dr. Koch. We don’t know each other but I appreciate how she was Strong and Calm well before we knew we’d need that motto. She quickly cut the cord and they whisked Maya to the side table. Dr. Koch tended to me. After some extensive suctioning I heard the first dragon cry. I want to say it was the most perfect cry but…reality is…it was the most bubbly cry I’ve ever heard. We knew it wasn’t good. It was muffled and unhealthy. The Dragon was in trouble.
Maya had aspirated some of my mucus plug. The aspiration led to some extreme heavy breathing which led to the “transitional something or something or other” diagnosis. After a lovely (well as lovely as child birth can be) marathon dance party we did that night, she took a deep breath too soon and choked. We were so happy to be able to have her treated by the amazing labor and delivery team at Carson Tahoe. They did a fantastic job and was able to help me initiate milk production even with all the stress and lack of baby that first day. Four years ago right now (approximatly 9:30pm) Scotty and Maya and I were all in our room at CTH getting to know one another. She had an IV in her arm with a baby sock over it for 3 days but we discharged to home happily and after those first hours of scare, I have nothing but amazing memories on the 3rd floor of Carson Tahoe.
Maya was actually quite planned. We knew it was a long shot, but we had hoped to have her during Christmas Break. Scott was still teaching back then and I was finishing up degree. Having a child close to Christmas is so special. This season is like no other time of year. Some years, the holiday season is incredible while other years it is filled with loss or pain. Either way – the holidays are intense. And what better time to find a reason to celebrate.
As stressful as December has been for Scott and I (dealing with this shift of Stanford to Renown, insurance crap, and work dynamic) we have had such amazing magic. Last Friday we got to open our door to the most magical part of the holidays…CAROLING! Stephanie Arrigotti of the Western Nevada Musical Theater Company….and a family friend for my entire life….set up caroling for our family. Last year we were able to go with the group to long term care facilities but since Maya can’t even go to a park – rehabs and facilities like that are not on the list of recommended. So. The kind souls bundled up and came to us. We had our Friendsgiving dinner that night with Auntie Megan, Uncle Adam, Auntie Genessa, and Liam so they were able to witness the magic too. Maria (one of my dearest friends) sang the sweetest carol and my nose still tingles when I think about that night. Thanks to all involved for bringing such a sweet experience to our home.
In addition to caroling, there are Christmas parties! Also not something our family can commonly partake in these days. BUT we were invited to the Northern Nevada Children’s Cancer Foundation’s Christmas party at the Eldorado on Tuesday. It was SUCH an awesome event filled with great food, dancing, amazing fellow cancer families, the best nurses, awesome fire fighters (with Yo-Yo’s…thanks to the one that gave Maya her green yo-yo…I know, you couldn’t say no). SANTA and ELSA! Oh and Olaf too. What a night we had! 
It is funny to think we were hesitant to go but I know we would have regretted it. It was amazing to make it through the night and realize I didn’t hear one cough, sneeze, or sniffle. I sort of imagine a person would be shamed if they showed up to an event like that sick. There were little bald heads bobbin around and others clearly in maintenance with hair growing back. Some kids had finished treatment early in the year and others finished years ago but still get followed closely. I was able to catch up with a few people that are becoming more and more close as this whole thing plays out.
Maya and Lincoln met Santa! Maya has been hesitant about Santa because…well she’s smart. But she got more confident as the night went on and she walked right up on the stage and sat on his lap. Lincoln….not so much. But daddy helped him cope. I have been asked what Maya asked Santa for Christmas. Truth is, she actually just wanted to know if he and Elsa ever hang out. My child. Ha. I don’t think she got an answer. 
The night ended with dancing with some wonderful nurses that we love. We practically had to drag Maya out because she was having such a great time but Lincoln turned into…well the only way I can explain his behavior is that of a drunken noodle. Really. He’d just grab my hand and his legs would go lifeless as he giggled. So weird. Maybe someone spiked his koolaid. Needless to say, with all the excitement and the late night, we were a nervous it would lead to the very typical crappy night of sleep but, we actually ALL slept until about 6:30 the next morning. I’m not sure who to thank. Maybe Santa heard my Christmas wish from 10 feet away. Thank you for whatever power it was that gave us that sleep. It was truly the best night of sleep I have had in months.
Today we celebrate Maya. To be honest. It seems a little like that first birthday. Almost as special. Thinking back to Friday February 12th, 2016….We didn’t know we’d get to see another one of Maya’s birthday’s. I hate to think that thought crossed my mind but – I’d be lying if I didn’t admit this birthday is more of a relief than anything. I am amazingly thankful for the help of our medical team and our kick ass pediatrician who got us to Oakland in plenty of time to beat this thing. Because of that, we are able to celebrate this wonderful child’s birthday again. When you ask her how old she is today – she will say Four. If you ask her when her birthday is, she’ll respond with “twelve-fifteen-twelve”. This might be strange to some. Why doesn’t she say December 15th? Because she is a cancer kid. When we verify her birthday for her meds and/or chemo, we say 12/15/12. She hears the nurses double check chemo with 12/15/12. To me, it is a reminder that we are survivors. We have made it this far as a family and I know we will continue to stay strong. My kid spends more days in the hospital than most and she might not know her birthday is in December….but she is stronger than most. She is so beautiful. Loving. Tough. Kind. Smart. Caring. Funny. And Alive.
Happy Birthday Maya the Dragon. May this year be your toughest. May the next year be the first of many many more. 
Love is Life.

Chika-ticka Tou TOU!

December 4th, 2016 (Scott) 

THANK YOU to the Nevada State Railroad Museum for their care, hospitality, and openness in providing a one of a kind experience for Maya, Ethan, Stella, and their families on Saturday. Thanks also to the Northern Nevada Children’s Cancer Foundation and local gallery, Artsy Fartsy for generously purchasing the tickets for all involved.

Events like the ‘Santa Train’ are part of what makes this time of year so special for kids. Unfortunately, the crowds and abundance of colds is what takes these kinds of outings off the table for immune compromised kids and their siblings. This year, museum volunteers and staff were not about to let a lowered immune system keep kids from meeting Santa on number #10 passenger car (built in 1873) or ring the bell on the #25 V&T locomotive (Lincoln about burst into pure energy hearing that whistle blow). Special thanks to Rebecca Bevans for being the catalyst for such a thoughtful event. The museum provided a special run for these kids and their families, and they even wiped down the car’s interior to make things as safe as possible for everyone.

We’re into our second month (of 18) of maintenance. Every phase is an adjustment, and this one continues to be. We have the routine more or less established, but the steroids present new twists on old themes. Maya takes decadron 5 days out of each month, and each time the side effects seem slightly more pronounced and hang on just a little longer. Maya’s sleep patterns are a constant struggle–it’s not ideal, but we’re discovering the balancing point with earlier bed times and a notable return to co-sleeping. Thank goodness for the king sized bed.

We learned recently that Renown will be ending their partnership with Oakland Children’s Hospital in favor of a partnership with Stanford. Exciting for Renown, yes, but stressful on our family as we now must decide between staying with our current oncology team or keeping Renown and moving to a new oncologist with a new team. This is not a decision we welcome ten months into leukemia treatment; we’ll work to gather as much info as we can (especially since insurance coverage may be impacted) and make our decision by the middle of this month.

The Christmas lights are up (minimally, as is my style) and the tree is lit (our first fake tree to keep mold/dust/etc to a minimum). Maya will turn 4 in a couple weeks, and we’ll have family in town over the Christmas break, so there’s much we’re all looking forward to. Sara and I have even planned an overnight ‘spa vacation’ later in the month… the bravery of those who will look after our children is truly inspiring.

Thank you all for the continued love and support. We wish you all a happy and healthy Christmas and New Year.