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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.

We woke up to a very pleasant surprise this morning – approximately four inches of snow! I suppose most people check the weather these days and likely not as surprised as I was but…well the bubble I commonly float around in didn’t allow me to remember that it is that time of year. We had completely forgotten to bring in some wood and the winter jackets and accessories were still up in the closet. This did not stop us from having a little winter wonderland fun.
When Lincoln woke this morning, I told him to go open his curtains. “Okay mommy” and off he went across the room. He opened the curtains and lifted the blinds to a white wintry scene. Both his hands dramatically lifted to his mouth and I heard the sweetest gasp of delight. I wish I had it on video – I just hope I can remember that forever. There is something so amazing and special about a child’s experience through this life. I’m so grateful to have such wonderful children to watch grow.

Speaking of grateful – Thanksgiving is one of my most favorite times of year. It usually comes with family, food, and friends. This year it also came with steroids. We survived nonetheless and even though things were a bit more “touchy” in our home, we still had time to feast on a turkey with some family. We some how missed that special moment of “giving Thanks” that evening since children (steroids or not) can get in the way. We have made up for our Thankfulness at other dinners with Maya and Lincoln. Maya continues to impress us with the humble things she is grateful for and Lincoln….well lets just say he LOVES applesauce about as much as anything.
As for me…I am thankful for modern medicine that is saving my child’s life – and other lives of course. I am thankful for a flexible job and family so that I can continue to work, help others, and help support our family. I am thankful for the strength I have come to know burning deep in my soul; strength that I once dreamed I could have one day. I am thankful for all of our support. I am grateful for all of you. We have said it before and we will say it until the end of time, we would not be as strong or as calm with out you all. Your prayers, thoughts, love, light lift us when we feel like we cannot take any more. When we don’t want to give Maya another dose of Decadron. When we see her liver enzymes raising and her ANC elevated though she is supposed to be suppressed. This “easy” part has been more difficult than I think most of the professional’s think is it. Maya’s labs actually look “pretty good”….except we want an ANC of 1000 not the 2500 that it is now. Her liver enzymes are indeed elevated likely from the chronic use of 6MP and weekly methotrexate. If her ANC is over 1500 next month they’ll have to increase her 6MP…which will likely mean higher liver enzymes. It is all a balance and a dance that we don’t like. It feels like a jog then a sprint then when it looks like there is a park bench for us to sit on…it is just a mirage. This is why we need your prayers. For the nights when my mind and soul are silent. Not dark. Just silent. So thank you. Thank you, thank you, thank you.

And thank you to Scott. More than anything, I am thankful for Scott. This life, my life, would look a lot different than it does. I know it would feel more fragile and broken. Because of Scott, I am lifted and can recognize my abilities and can thrive. He doesn’t make me “whole” – he makes me the best version of myself.

We spent the better part of the morning playing in the snow this morning. We are happy to announce we now have a temporary yard mate named Olaf. Scott’s snowman making skills matched with my costuming have made for quite the back yard company. Maya and Lincoln are in love (especially Maya)…unfortunately when the sun comes out, you might all hear the tears of sadness no matter where you live. She can handle a 3/4 inch needle through her chest like nothing but the idea of the snowman melting – not okay.
Love to you all. Thank you for your….everything. There is no possible way for us to tell you what your support means. I’ll keep trying to find the words. Till then – enjoy some pictures.
Love is life.

November 18, 2016  (Sara)

So here were are…day 24 of the first cycle of maintenance. Not much to report. Things are getting a little more routine these days and Scott and I continue to try and find a stride – one that will be sustainable for the next year and a half. We have been waking Maya up anywhere between 9:30 and 11pm to give her the 6MP. I had such anxiety about the timing just before the phase and the most wonderful thing about writing publicly is…I expressed my anxiety and my wonderful support system helped me to find a way. Thank you. All of your comments, concerns, and suggestions are what carry this family through the dark times. Truly.

Maya has also been getting a weekly dose of methotrexate orally. 6 tablets before bed on Wednesdays. She can actually chew them but I offer them on a couple of specialty maraschino cherries – its the Italian mother in me. She has been tolerating them well (we think) aside from some lethargy here and there. Constipation continues to be a struggle. Its amazing that as a dietitian in early intervention, I help families work through their child’s constipation all the time – yet working with MY child and her constipation feels daunting. This whole journey has offered more empathy and understanding than I ever imagined.
I would say for a couple of days after the methotrexate (Thursday and Friday…maybe even Saturday) she is a bit off. She will find times for play and imagination but her mood isn’t that of a careless 3 (almost 4) year old. She tends to be a bit more dependent and needy and uncomfortable. She has complaints of leg pain (some times enough to warrant some tylenol even) at night and she has some random pain in her arms. Nausea hasn’t been awful but I can tell when she’s a little more “green” than feeling well. We try to accommodate as much as possible with hopes that we can still build the strong young girl we were growing before.

We are heading into the holidays with excitement even though this season looks quite different than last year. Scott and I are blessed to have laughed and smiled enough in our lives that it is more “muscle memory” than anything. Though it may be slightly less frequent, we do still find time to genuinely smile and laugh.

I’ll share a fun little memory. In the past Maya and I have discussed that I’m a Dietitian and that I work with children and their families to keep them healthy. I have some of my reference books at home with me this weekend and Maya got her hands on one.
Maya: “Can I have this book Mommy?”Mommy: “no baby, that’s my book for work”
Maya: “but it has kids on it. It’s for kids”
Mommy: “actually it’s about kids but it’s for me – I use it to help keep kids healthy remember? Healthy through their nutrition and the foods they eat”
Maya: “oh yeah…that’s because you’re a Nutrition-er right?”

We have officially started Maintenance. Maya was NPO last night for her lumbar puncture this morning. We made it to the clinic only 3 minutes late and her lab results came back quickly. ANC is at 1017 and platelets are at 270 so we are able to start the next and final phase of treatment. We can now start planning a little more for the future and have an official end date of treatment. We will come to the clinic only once a month for IV chemo. We start “pulse” doses of decadron today – 5 consecutive days every 4 weeks. We also start the 6MP and weekly oral methotrexate tablets. And by “we” I mean Maya but we most certainly fight and endure together.

We have been blessed with 2.5 weeks of a break. There was a wonderful visit to Nona’s and…a horseback ride! We aren’t entirely sure it was “recommended” since we aren’t even allowed to have a real life Christmas tree but – well the look on Maya and Lincoln’s face was worth all the risks.

I wish today felt a little better. I really just feel tired. It might be because I haven’t slept well in a long time…or it could be because I’m tired of feeling stressed. And worried. I’m tired of seeing my child have to go through some things a child should never have to endure. She makes it so easy when she is her usual Strong and Calm. But we can’t always be strong. No one can. Today’s trip to the bouncy bed was a bit scary for her. She was uncomfortable and sad…it made my heart break. They had to infuse the propofol while she was still sitting up crying and the nurse gently guided her to the pillow as she fell asleep squeezing my hand. My heart hit the floor.

My anxiety subsided after some coffee. Maya woke hungry and in good spirits. She got to pick out some super cool Beads of Courage and watched a movie for the rest of the time needed to “lay flat” after her spinal tap.

Our next chore is to pick up all the new medications and set up the Morrison Refrigerator MAR…

Final day of treatment: April 21, 2018
Save the date: sometime that summer…..there will be a party.

Love is Life

I spoke with Angela, the RN for Dr.Salo’s office, today. She is starting to prepare all of the medications for Maintenance. I still can’t really believe we are almost there. It feels just like last week that we were in induction…yet it also feels like that was a life time ago.

We still have yet to establish a comfortable time that we will give Maya her oral chemo (6MP). I really don’t want to be difficult but this stresses me out. Big time. I work with families. My job is to counsel families about their children’s nutrition – feeding the failure to thrive, autistic, severely delayed, medically fragile, and more. I attempt to encourage behavior change, mostly for the parents. I know that in order for follow through to be successful, the family has to see and feel change as comfortable and realistic. We try to build a plan together. There are very few things that I recommend with out asking the family if they feel it realistic…and those are commonly the recommendations that aren’t always followed. Because it doesn’t work for the family…even if my professional opinion is that they are necessary changes.

I just wish the doctor could tell me “there is a vast amount of research that shows giving the med at night is most efficacious”….but she can’t say that. There is just one research article from forever ago that shows a slight difference in timing. So I guess what I REALLY wish she could tell me is “giving the med in the morning is just fine”. There is just already so much change for Maya. And the holidays are coming. And the movie nights we can have! What if we want to stay up a little late and eat a bowl of popcorn? Not always – but sometimes. There are three times of the day that I think Maya could have an empty stomach…and only one of them feels comfortable. If only I could hear what I want to. I don’t mean to be stubborn. I just want something a little easier…for Maya. For me.

We were recently asked if the Northern Nevada Children’s Cancer Foundation (NNCCF) could share Maya’s story in their quarterly newsletter. We’ve never really been hesitant to share the story since, as with any trauma, we don’t want to keep it to ourselves. We’ve been so blessed to have the opportunity to spread awareness multiple times. What is always difficult though, is choosing the information to offer.

They asked us to answer 5 questions. Ummm….but how many words do you want? I mean, we literally have a website that has probably 100 posts or more. When some one asks “how was Maya diagnosed and what happened next” and “how has it changed you life”. My answers are: “bruises, anemia, google, why’d I google, good doctor…I blacked out” and “life flipped upside down”. Or I could write a 100 page book. I don’t seem to have a happy medium or a one paragraph answer. None of this has been simple and I guess I just have too much to say.

Scott was away for most of the week for work but ultimately helped to reel me in a bit. The representative from the NNCCF was kind and let me submit as many words as I did. They, of course, couldn’t publish all of my words but I think they did a great job of telling the story. Our story.

If you’d like to check out the newsletter, here is the link:  Maya’s Story in NNCCF Newsleter

We are heading into our last weekend of no chemo for over 18 months and we have some fun things planned. We are looking forward to Apple Hill, a visit with Nona (my grandmother), and hopefully some great baseball (which for this family means more Dodger wins than losses). No matter what we’ll enjoy.

The dragon’s smile and stamina breeds warmth and strength for our home. Even when she has tough nights with leg pain and restlessness, she wakes for a new day with excitement. She is flying as fast as possible, loves intensely and spits fire as much as ever. She’s enjoyed a play date with her besties and we can’t wait for more outings soon.

I look forward to the day I no longer have to look to her for a reminder to stay strong and calm. I look forward to the return of my own strength and contentment from within. Till then, I graciously accept the reminder from my strong and incredible child.
Love is life.

….there were crickets at our table for a solid amount of time. She won. We had nothing better to talk about. If only everyone felt that way, our world might not feel so brutal right now. Her blessing came at a time of day where the adult in me was loudest. I had prepared dinner, completed chores all day, paid some bills…and had turned on the presidential debates. Needless to say, the innocent kid in me was certainly over shadowed by obligations, stress, and anxiety. The kid in me needed to hear Maya’s comment more than I knew.

“I am thankful for Love and the Earth”.

I am too, Little Love. There isn’t much that I can say I’m more thankful for, obviously. It’s such a simple and yet essential acknowledgement. One that I think is taken for granted most moments of our lives. I am thankful for Love, the Earth, and my wise child.

Maya is doing well. She had her 5th and final dose of the escalating methotrexate as well as vincristine on Friday. This marked the end of Interim Maintenance 2 and we head into just over two weeks of a break from chemo for blood recovery. She has tolerated well, as she does, with some lethargy, leg pain, nerve issues, and head aches. She rarely complains but Scott and I can tell when things are off. Her stamina is incredible.

Friday at the clinic went quickly. Scott had taken her in for a lab check the day before (since the escalation in dose requires her to meet the lab parameters of an ANC above 750 and platelets above 75). They had already made the chemo and Maya’s access was quick. Some tears appeared only when Maya got her flu shot. It’s so predictable – anything out of the ordinary is cause for concern with the dragon. While she cried at the shot, she recovered and moved on.

Some tears welled up into my eyes as well at that visit. We commonly talk with the doctor at each visit. She looks over Maya and answers questions and reviews Maya’s medications. Since the next time we see Dr. Salo will be on day one of Maintenance…we had some questions.

We have heard Maintenance is the “easiest” phase. Mostly we have heard this from the physicians and RN’s or Case Managers. Of course it’s the “easiest” phase….for them. They will see us once a month. There is more “homework” than anything. I have been monitoring and assessing our family schedule (or some version of schedule…or some vague desire of schedule) because we are about to hit a very rigid phase. One that lasts for over 18 months. Maintenance. It sounds innocent. It sounds like a dream compared to Induction. But it has more oral medication than almost all of the other phases. One of which requires an empty stomach and the only research (completed 50 years ago) shows that it is best to be given in the evening. 6MP has to be taken 2 hours after a meal and an hour before a meal. No milk or citrus can be given anywhere close to it either. Oh and a missed dose can be destructive to Maya’s prognosis or cure rate.

So – at what point is my child’s stomach empty? In the morning. Right, but the only research about this shows that it is most effective when given at night. I asked how important this is with the doctor. She is smart. She is saving my child’s life. But she has no idea what it feels like to wonder when I will safely (and efficiently) give my child her chemo with out interference of food. The doctor mentioned after dinner. After dinner? Do you know what its like putting dinner on the table on time? Some times we can have dinner on the table at 5:30 so she can be done with any food at 6 (a miracle). She could take her chemo right before bed at 8 (even though we try to get her to bed at 7:30). But with no milk. She is used to milk before bed. It’s part of her day. And what if dinner isn’t on the table till 6:30? Then chemo at 9? Then we discussed after nap. The first time she was on 6MP she would sleep for 2 hours – perfect. Wake up, take the chemo, wait for 45 mins to an hour, then dinner. Well – now she sleeps (if we are lucky) for an hour. And it is a bit variable. There is no “easy” answer.

Dr. Salo could tell my eyes were welling with tears and that I was getting upset. She put her hand on my leg in attempt to comfort me. She is a very interesting person. Not a cozy person in my opinion, but as someone who works in hematology and oncology, I don’t doubt there is a need for emotional disconnection. I think she did her best at trying to make me feel better. She knows I’m educated. She knows I’m realistic. She hasn’t seen my emotional side and I imagine I threw her off a bit. She said “don’t make this harder than it is, this is supposed to be the easy phase”…I really start crying. I wanted to scream. I wanted to holler. I feel terrible saying this but…I wanted to shake her. I wanted to laugh with disgust. I didn’t want to cry in front of her.

She hasn’t seen me cry before – maybe on the day she told us Maya was Standard Risk- but those tears were different. These tears were frustration, inconvenience, pain, worry, confusion, wonder, torment, suffer….fear. I’m scared. I’m scared to death. I’m frightened and get sick to my stomach at the thought of relapse. Giving Maya her medication at the right time, every day, on time, safely…contribute to her success. Her survival.

“…Harder than it is”. There hasn’t been anything harder than this. She doesn’t get it. Luckily, most people don’t get it. Do I explain it to her? She’s does so much for my family, I would hate to offend her but it felt like she knew nothing at that moment. We finished our conversation and I said “thank you”. What else could I say? Maya asked if my tears were “happy tears” and I couldn’t lie to her. All I could say was ” not this time…mommy is just a little scared but I will feel better soon, you make me feel better”. And she does.

Denise, the nurse, spoke with me also. She is kind and caring and understanding. She reassured me that we will be great and since we care this much about it…it will be a priority. And it needs to be.

I have nursed my children and been their sole nourishment for a time. It was relatively easy. It was as natural as anything and part of my Love for them. They continue to depend on me in ways that I have been prepared for since…well forever. I am a mother. I am a great mother. But even 9 months in to this…I don’t feel prepared for any of this. I know we will get through this. For some reason I know it. Scott and I have been through fiery hoops together. We’ll hold each other through this one. This will feel better one day. I am told it will feel like a routine. But Friday…and today – I feel scared and vulnerable. Unprepared for any of this.

Maintenance will include: oral 6MP daily, 5 days of Decadron each month, IV vincristine each month, oral methotrexate once a week, lumbar puncture with methotrexate every 3 months. Her labs will hopefully be stable. No massive drops aside from a likely drop in the first 3 months of maintenance. They aim to keep her ANC between 500 and 1500. If her ANC is 1500 for 2 months in a row they will increase her dose of 6MP since a constant depression is the design.

Aside from my break down and lingering fear, things are fine. We are enjoying the warm fall weather for now and trying to find some normalcy. Maya’s hair is growing wonderfully. She still looks like a sweet little albatross chick but I love sneaking a peak of Lincoln rubbing his cheeks on her head. She is so soft and Lincoln is a sucker for anything soft. It melts my heart.

Maya’s labs were great. ANC of 1300, Hgb of 11.3, WBC at 3, Platelets of 377.
As my confidence wavers, Maya the Dragon soars. For the most part, she is flying around her kingdom only swooping down for moments of rest (or some snuggles and warm milk). She inspires me to find my strength and proves we can thrive. When I look her in the eye, my fear subsides. She is rebuilding her castle and ruling her land triumphantly. This child is magic and this world is better because of her.

Love is Life

September 29, 2016 (Sara)

Birthdays are probably Maya’s most favorite right now. Well I guess if you ask her she’d say her favorites are pears and popcorn but those change daily. Today I turn 35. I’m not really sure where that time went but I am blessed to have had a wonderful life so far. I have two incredible children (healthy or not), parents (in laws included) that are unwavering with their Love and support, siblings that can cheer me up at the drop of a hat and make me more proud all the time, a Grandmother that has taught me how to stay young and strong (and beautiful inside and out) even at 90 years old, an amazing career, priceless friends and family, a strong body, stronger heart, and the most perfect man I call a husband. Along with my 35 years – I have memories with friends that come from over 30 years ago, memories of lost friends, memories of dreams, dreams that have come true, dreams that have morphed into something I’d never thought possible; I have a past worth living again. As painful as some times were – there have been equally wonderful times. And yet with all of this I continue to build. I am building new friendships and experiences with people I work with, ladies from Kaia FIT or my child’s old school, my brother’s significant others…even more pieces and parts to this incredible life. I have never felt more blessed. For so many reasons. And I feel I can live forever with all the love I am given. Thank you.

Maya’s favorite part of birthdays is, of course, the cake. She is fairly certain that you don’t actually have a birthday until you blow out a candle…or rather until SHE helps you blow out the candle. I had to dance around a bit tonight since we had other plans and blowing out a candle was not part of those plans (okay by me…I’ll postpone that one this year). Scott and I celebrated with a mass amount of sushi shared with a small amount of family. NOT that Maya and Lincoln couldn’t join us – her labs are actually pretty normal this week – but…she’s 3 and a half and Lincoln is 1 and a half…and we wanted to have a nice adult time. We are so lucky to have found Amy. She hung with our children tonight and we were able to enjoy a wonderful sushi dinner with Bapa Pat, Grandma Sandy, and Bapa Lance, Megs, Gen, Naveen included. We were certainly missing a couple of Maya’s Village but Adam and Grandma Bella were there in spirit. Thank you SO much for hosting our dinner Lance. So generous! (And sneaky..) We had a blast drinking some (some!) saki and eating some (SOME..Okay way too much) sushi at Tomo sushi. T’was a wonderful night.

While we ate sushi, Amy baked some wonderful looking cupcakes for my birthday. She says it was Maya’s idea…I actually don’t doubt it. If I had to guess, her desire was not to ensure another birthday for mommy but to ensure her own intake of delicious vanilla cake stuffed (somehow) with chocolate and whipped cream topped cupcakes. I would like to say we enjoyed but we truly didn’t have any room left…I’m not entirely sure when that room will be available again. Tomorrow is another day. Thank you Amy. And Maya and Lincoln 🙂

Today is Maya’s second day into her 4th dose of chemo for this phase. Yesterday Maya had IV vincristine and the pretty high dose of IV methotrexate. In addition, she had a lumbar puncture with IT (intrathecal) methotrexate. The increase in dosing is dependent on her labs. She needs to make counts to escalate…and she did with flying colors. Days of more play dates, visitors, and minor excursions are feeling more possible. And probable. The fuzz growing on this child’s head is precious. She’s my little baby Albatross. So soft. So sweet. And ever growing. The vincristine will possibly knock down the growth at any given infusion. Vincristine is the chemo that will attack the cells in their “growth cycle”. So there is a chance that she’ll thin out again but not like she did from the Doxo (red devil). She likes her fuzz but has already asked me to shave it once. I told her I loved her just the way she is and we all moved on.

ANC: 1160
Hgb: 11.3
WBC: 3.8
Platelets: 275

All of her electrolytes, kidney function, liver function, and awesomeness look great.
She is a wee bit more low key these days but all in all remaining strong and calm.

We continue to feel loved and supported and strong. Scott’s words last post gave me butterflies. He usually always does. My dragon family depends on his stability as he empowers us. Thank you all for your love and please forgive our sporadic silence. We find that when things are feeling more normal and “good” we don’t have as much to say. Strange. Thank you for always being there, during silence and during our vents.

Congratulations to my brother in law, Chris, on making Major in the Air force. I’m proud of all my siblings in many ways but tonight, I’d like to thank you for your service to this country. You have sacrificed more than I know. I hope you’re as proud as we are.
Love is Life.