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Risks. Apr 25, 2016 10:50pm

Apr 25, 2016 10:50pm (Sara)

This child. She never ceases to amaze me. 4 days into this cycle and aside from some puffy cheeks and thinning hair, you’d never guess she was going through chemo. Her three year old temperament has definitely returned and is as challenging as ever.
Scotty and I have been pleasantly surprised with Maya’s tolerance to the new infusions. It is definitely a little nerve wracking that we won’t see her labs for another week but…I hate to impose an arm pokey if we don’t have to. She has some bruising to her left shin but she has been quite rambunctious and her platelets were more than adequate at the last draw. Its a little hard not to freak out when I see those bruises…it’s just so nostalgic. I have frequently seen bruising on Lincoln and have to talk myself back from the edge of texting the pediatrician requesting a blood count draw for him. He’s a toddler. He’s a climber. He’s gonna bruise.

Some people, actually many, have asked if this is something we should worry about for Lincoln; is it hereditary? As of now, all research says no. From what the doctors tell us, there really is no “cause” of leukemia. It’s just a super crappy unfortunate shot in the dark that Maya’s white blood cells became leukemic. That being said, I have definitely googled “causes of leukemia” to find all sorts of information that just threatened a ton of mommy guilt. Did the salami that Maya loves once in a while do it? Was it the rare candy with yellow 5 or red 40? (Though my child has probably had way fewer of those items than most American children…and most American children do not have leukemia) Is it that I got an iPhone just before she was born? Was it the power box that lives 30 feet from our old house? Our water? The wifi? I use dish soap? Eff. All these (and oh so many more) can cause a mom to go nuts.

One anonymous person actually sent along some information on how the vaccinations that we protect our children with “cause cancer”. I want to believe that person was trying to share information and that it came from a good place…but reality is, it just seemed like they wanted us to know we might have given our child cancer. For the record – she hasn’t had a vaccine for a long time and the leukemia was likely weeks if a couple months along at the time we caught it. So, I hate to feel angry at people like that but it definitely doesn’t help me, my child, or our coping. And also for the record, I wouldn’t have done anything different.

Scott’s grandpa (Maya’s great-grandpa) that died after battling leukemia as an adult. Does that count as hereditary? Or just bad odds. From the current research, it seems like it isn’t hereditary and Lincoln, Scott, myself have the same risk and odds as anyone. It really is hard to not go deep down the road of how, why, what did this…but we can’t. We just can’t.

For now we will try to protect her. She has been more accepting of fruits and vegetables (so grateful!) and her appetite hasn’t seemed to drop too bad. I love that her face is coming back. It changed so fast that I don’t think anyone could be prepared for it.
As a dietitian, I have been concerned about not just her appetite but her vitamin and mineral intake. I started her on a multivitamin after discussing with the dietitian from Oakland. With Maya’s treatment, we have to be careful with some of the micronutrients we give her (specifically folate and iron). It’s nice to hear ideas from an RD that is around cancer kids all the time. Needless to say – Trader Joes’s rocks and they have exactly what we need.

I feel like we are in the eye of the storm. I will appreciate this and take full advantage of it. Thank you ALL for the love and support. I have a sneaking suspicion that if we didn’t have all the prayers, love, light, and support…it wouldn’t feel as smooth. Thank you for everything. Truly. Maya the dragon is thriving. She is fighting. She is not just surviving, she is dancing. She is prevailing. She is protected. She is loved. She is burning hot and ready for whatever this journey has to throw at her. Thank you for helping us get through this. Knowing we have an army behind us is the strength we need.

Love is life.

Consolidation Complete Apr 21, 2016 11:55pm

Apr 21, 2016 11:55pm (Sara)

A motherly assessment:
WBC: 2.1
Hgb: 10.8
Platelets: 325
ANC: 1560

These are all good numbers (for her) and will have to sustain our curiosity for the next 10 days. Her WBC are dropping again but we have been warned this will happen. After all leukemia is a wolf dressed in a sheep’s suit waiting to attack again. It is unfortunate we must sacrifice the heathy ones to protect the rest of the den.

A new concern has come up…her liver function tests. If anyone has ever had a metabolic panel, they are the ALT and AST values. Maya’s were mildly elevated for a long while since chemo and steroids tend to increase them. They resolved and were normal for a while. Today’s labs really freaked me out…I’m not gonna lie. They have definitely trended up (and by trend I more mean spiked) and the ratio of the values seriously look like a patient with drug induced hepatitis…which I guess it sort of is.

The doctor will continue to monitor her liver function (though not nearly as closely as I’d like – if I could get daily lab draws again without having to get her poked I would!). In the past, the doctors have reassured me that this is not permanent. That no scare tissue will form and she’ll have a normal liver again…but man, I really think there might be some bliss in ignorance.

In other realms of Maya’s wellness: her appetite is back to normal. The very typical preschooler appetite and as variable as it was when she wasn’t sick. She definitely has some favorites but she will endure what ever we ask her to eat. Tonight it was broccoli. She used to love it…now she will eat it only because she wants to eat another string cheese.

She is feeling great. The side effects are a little different than I expected. We all know what induction was like…thank the Gods that is over. As Scotty mentioned, now we have new ones and perhaps even old ones that are just now making themselves known. Her hair, of course, has been thinning and after today’s dose of vincristine we’ll see how many follicles were in the process of building. Such is life, it’s all about cycles and whatever hair was in the of “growth” cycle versus the resting phasecwill fall out. I have found that her hair loss comes pretty immediate after an infusion. We will begin to see some fall tomorrow (probably) and depending on how much will fall…it will be a solid 4-5 days of heavier depletion. Then it usually subsides…till the next infusion.

Her body looks to be getting back to normal. She is down another several ounces. Now she is 37.5 lbs. This is still up a good 5lbs from her baseline before diagnosis but at least she is feeling better. She has some serious “holiday cheer” but at least she isn’t dropping it too fast. Over the course of the next three years, I want to make sure she sustains her appropriate growth and development. As someone who measures and assesses little kids’ growth and nutrition for a living, it has been hard seeing drastic changes. Up or down we rather see trends…you can more easily change the course of a trend.

Other issues of course have surprised us. You might imagine what can (and does) get irritated while “peeing out chemo”. I’m just so grateful for the fact she is not in diapers…I don’t know what I would do. Her poor peep.

All in all we are heading into this phase strong and calm. I had to ask her to skip and chasse (a ballet move) for Dr. Salo today. Doc was very impressed.

I have so many tools and resources that I feel confident that we will keep our Dragon strong. As long as we keep her strong now, the red devil will look like a dull flash light compared to our Dragon’s breath. Her flight is fierce. She is beautiful and while her parents can be a little more uneasy at times, Maya is unwavering. She has bounced back impressively and ferociously.

Thank you for the love and support. I enjoy seeing Maya’s bracelets on surprising wrists. We love you. Love is life.


Interim Maintenance I — Day One Apr 21, 2016 7:30pm

Apr 21, 2016 7:30pm (Scott)

The past few weeks have been smooth. We’ve seen stable, strong labs and a very energetic three year old girl back to her usual behaviors–both good and bad. Thinking back to our first panicked drive to Oakland on February 12th–it seems like a lifetime ago–I wondered then whether or not we’d ever see our little girl healthy, happy, spunky again. It is an absolute blessing that I can say that I have–she is here in full force having weathered the initial storm and emerged on the other side, seemingly unchanged.

I think it’s at times like these that parents might begin to wonder whether these next stages of treatment, these escalating doses of vincristine and methotrexate, more steroids, and more lumbar punctures are really necessary. She looks great, just what you’d expect for a child pushed to the brink and now healed–maybe it’s all over. But many decades of research and trials and tragic losses paint a very different and very compelling picture. My heart breaks for the kids and for all those people who’ve suffered and helped modern medicine to learn and to be as effective as it is. We know the illness is still there, and we know the many paths it would take to overwhelm Maya’s body. So we will move ahead and do everything in our power to ensure the leukemia never gets the chance.

This is day one of Interim Maintenance I, a 57 day phase with increasing doses of IV chemo (vincristine and methotrexate) every ten days. With each phase there’s a set of new challenges: a new schedule of blood draws and visits to the infusion center, new side effects, and new potential risks to major organs or infection as cell counts waver. We learn as much as we can as fast as we can from the professionals we work with and from the other families at different stages of the treatment. But it’s a little different for everyone, so we know the most important thing will be to pay close attention to our little girl and do the very best we can as often as we can.

Finishing a phase of treatment is a wonderful thing, but at this moment the stress levels have jumped up again as we prepare for more of the unknown.

We’re so thankful for the continued support from friends, family, and strangers. A special thank you to the Firkin and Fox in Carson City, to Jim and Gabby Phalan for hosting a wonderful benefit.

Another special thank you to Grandma Sandy, Bapa Pat, and Aunt Katie for looking after Maya and Linco so Sara and I could get away–every moment of our ten hour vacation helped relax and rejuvenate our spirits and added strength to keep us rolling along.

We thank you all for your continued thoughts and prayers, and the list of those we keep ours continues to grow… Ethan, Alicia, Kyra, Victoria, Kyla, Amaya, Danton, Jim, Mark… know that you are not alone… Strong and calm… never afraid. This world can be a very big, very lonely place, but together we make each other strong. Our strength is your strength–Thank you.

Summers Apr 14, 2016 10:57pm

Apr 14, 2016 10:57pm (Sara)

We have been taking advantage of this week and loving it. The weekend with a belly bug definitely made for some really poopy times…but it was really pretty short lived and we got to move on. We have had some wonderful things to celebrate (Happy Birthday BaPa Lance!) and Maya has been feeling awesome. This week Maya tried lobster for her first time as we enjoyed celebrating BaPa Lance’s 70th. We are so thankful for the great food, great wine, great company, and great spirits! Plus we enjoyed the world’s greatest key lime pie (thank you Chef John at Glen Eagles). It was all wonderful…in reflection, it is very good timing that we did not introduce lobster to Maya during induction phase when she was on so many steroids. I would have needed a second job to cover the grocery bill!

We are closing in on the last of days of Consolidation. We had no lumbar puncture this week. When Dr. Salo called this phase “wussie-chemo” I never knew I would appreciate it as much as I do today.

Maya did have to endure an arm poke yesterday. It has been a while since she had a peripheral lab draw and unfortunately…it didn’t go so strong and calm-ly. It was more strong and dragon-like….fierce. It was actually a little more heart breaking than I thought it would be.

We brought Lincoln because Maya wanted to show him how strong she was. Well… the phlebotomist used a different style of needle. There was no pokey butterfly and that (I think) really made her uneasy. We always try to prepare her for what is coming and we had talked about the pokey butterfly, not this weird looking large needle thing. The phlebotomist said it is sharper and works better but…Maya jerked away and made every one a lot more on edge. We had just told this woman that Maya is fine and she didn’t need to bring in an assistant. Maya finally let Scott and I hold her arm (we hate restraining her) and Maya looked into Lincoln’s eyes as she yelled “use my Boodah button!”. In hindsight, I’m not sure if it was a good idea to bring Linco. He watched her get her IV placed in the ER and now…well shit, we might just be traumatizing him. He seemed fine. I think he was actually happy to be with Maya. It’s really hard to know what to do with this whole situation…and how to parent in between these wild experiences.

After the poke, she was 100% fine. In fact she really enjoyed handing out her orange Maya bracelets to some of the staff. It was pretty cute. I always wonder what they think about this little girl coming in sometimes weekly, sometimes cancelling. Daniel (one of the phlebotomists) is very nice and I think knows she has leukemia because he drew her blood when she had all the bruises. But really, I doubt anyone really knows the story behind the girl with the thinning hair, wearing a hello kitty mask.

Even though the arm poke really sucked, the lab results were great! Dr. Salo gave us an option to skip labs this week but I cannot imagine not having any idea of where she is. Her numbers swing drastically. One week we saw her ANC drop from 5000 to 1030. It’s really enough to make a Moma (and daddy) crazy.

Recently, I find myself telling people “we’re trying to hold on to these great days…” when they ask how Maya is doing. I don’t mean to be sad about it. It’s just that reality is that these weeks are probably the best we’ll have for a while and we want to breathe them in as much as possible. We want to breath them in so that they might sustain us in the coming weeks. The coming months. I know I will need to pull from the stamina we feel now. So I take a lot of videos of her running.

This summer will be like no summer I’ve had. I’ve had wonderful summers. So many I can’t even really pick my favorite. I spent summers riding my bike all over the neighborhood I call home today and countless sleep overs with my best friend, April (we lost at 14 years of age from a brain tumor – glioblastoma…but that is a very different journal entry). Some of my favorite days were during summers lifeguarding at the Carson Aquatic Facilty where I met my amazing Love, Scotty. One summer I lived on Kauai with my girls Megan and Nikki. That summer gave me so many life lessons and an amazing amount of fun. I’ll never forget summer’s in Los Angeles riding my bike with Gen and Megs to Venice beach for happy hour. Or taking myself to Dodgers games. One summer I got married…on the beach…in Hawaii…and spent 3 weeks on my favorite spot on Earth with my favorite person. Summer of 2012 I spent feeling kicks and flippy doos of my little dragon baby moving and dancing while wading in Lake Tahoe. Summer of 2013 I spent in my life changing dietetic internship. Summer of 2015 I spent nursing my baby boy and fingerpainting with my little dragon.

This summer will be different. It will be trying but I have faith the Dragon will keep us flying. She is amazingly strong and I know as difficult as this will be, we will get through it and it will be one of those “summers” I reflect on. Maybe it will end up being my favorite. Maybe it won’t but at least I know it will eventually turn to Fall. The leaves of this phase will turn and eventually fall to grace the ground with burnt orange and maroon …then blow off in the wind.

Motherly assessment: Hgb 11.9 (almost normal!), WBC 4.1, platelets 408, ANC 2600. She still has the moon face but is doing amazing. She runs. She dances. She sings. She plays. She cries. She jokes. She throws 3 year old tantrums. She learns. She loves. She flies. Love is life.

Smooth Sailing…

Apr 10, 2016 3:17pm (Sara)

We are so happy to have these next couple of weeks “off”. Wednesday was the last of three weekly lumbar punctures and now Maya’s therapy consists only of oral 6-MP every evening…..and our crossed fingers. We do go this Wednesday to our Carson City Lab Corp for an arm pokey, but our next clinic visit isn’t until Thursday the 21st. It almost seems like smooth sailing. If only this “vacation” came with more of a sense of security. Maya’s last ANC was high, her blood counts appear to be right on track, she is getting more and more strength in her muscles, her belly is almost back to normal, her cheeks are still “moonie” but also coming down a bit. We even got to go out for dinner at the Firkin and Fox. She was feeling great. We were all feeling a slight sense of normal life creeping back into our world…..then boom. Stomach virus. Ugh.
Almost a year ago Maya gave Lincoln (our then 2 month old) this belly bug. We were so nervous that our little guy would need IV fluids or something. But he was fine. Well, he got her back this year. He’s been fighting off some sort of belly bug for a few days. It finally caught up with Maya. We spent the night changing sheets, towels, and bowls. We are so so so grateful there doesn’t appear to be a fever that goes with this bug. She has really only held some lemonade and Mommy’s milk down but her spirit is still there. We, of course, spoke with Oakland. We called to make sure some Zofran was appropriate. We can’t have her puking up her nightly chemo!
She took a long nap and now seems to be doing better. She is playing outside and while I can tell we are all not 100%…we are going to be okay. If only cancer and the side effects of the therapy were all we have to worry about. Sometimes I forget there are things in the old world that can give our new world more of a shake than we are ready for. Smooth sailing. Right. Smooth sailing in a hurricane. Love is Life.

Team Dragon Apr 3, 2016 10:40pm

Apr 3, 2016 10:40pm (Sara)

Our home was filled with such joy today. Joy from squeals, giggles, belly laughs, tantrums, snacks, fizzy water, cheese trappers, boucing, borrowed hats, and preschool law. Maya’s “besties,” Brookie and Laeta came to play with Maya. My heart was complete hearing all the wonder and the foundation of friendship build.

While Maya’s ANC was fantastic last week, we still have to be careful with our visitors. Luckily, we don’t have to be AS careful as we do for an ANC below 1000 (or frightfully below 500). Still…I request the kids get a temperature check. Why just the kids? Uhhhhh….not sure. Day care? Shoddy hand washing skills of a three year old? To be honest, part of me wishes I could temp every person who wants access to my house. I suppose the less crazy Sara talks me out of actually requiring this. I have wonderful friends that take my requests seriously and I know it has sheltered Maya in the past. I truly wish every family going through this has amazing people in their lives…as amazing as our people.

Today her two besties came to play! I was slightly nervous that the girls would be hesitant since Maya looks so different. I mentioned it to their mommy’s and left it up to them on whether or not they wanted to bring it up. Maya is smart. She knows she looks different. She mentioned me to early this morning that she didn’t want her friends to come “because they might not like me”. I have NO idea where she’d get that; Scotty and I decided to have a discussion.

Not two minutes after the girls’ arrival were they screaming, running, laughing, and hugging. It was amazing. They even played Dragon-something (not exactly sure the game but they were flying around the house “roaring”). They played inside. They played outside. They ate some lunch. They played some more.

Silvia (Laeta’s baby sister) and Lincoln held their own too. Lincoln hasn’t ever been around that many crazy kids before….or at least not as a toddler. I have a wonderful image of him standing in the play room not knowing where to look as three dragon girls were flying around. He had no choice to be start running too.

There will be ups and downs over the next 3 years but we MUST take advantage of these good days. We MUST hold on to these days and pull from them when days like today aren’t possible. I truly appreciate Michele and Rachel (the mommy’s) for bringing their girls. They could have spent their day out at the park. Or the museum. Or a movie. Or any other number of places. They opted to bring their sweet awesome selves and their daughters to us. They shared some wonderful Aloha and Love with our home.

Our Dragon is thriving. She is flying higher than ever before. She is stronger than ever before. She has bonded again with her team of dragons and her confidence has grown. She feels connected with the outside world again and knows she is loved…and supported.

She will probably dream of today and the group hug at the very end of the play date. Thank you. Love is life.

Happy Little Ditty Apr 1, 2016 2:00am

Apr 1, 2016 2:00am (Sara)

Maya had a couple of amazing visitors today. It’s funny how certain experiences really make for an emotional roller coaster.

Auntie Tami stopped by to drop off a few awesome books, some Love, and the final donation money from selling Nature’s Bakery Fig Bars. It’s incredible that an item considered to be a staple in our household is produced by a local family owned-amazingly generous company that decided to donate and fund raise for us. A giant THANK YOU to the Marson family and Nature’s Bakery.

I was so happy to be able to give Jan Marson a hug last week; I gave a hug that could never match my gratitude. She gave me something else too…I found out that she has actually met Maya. It makes my heart swell knowing that some of my colleagues have seen Maya in a realm that even I haven’t seen – she met Maya at her school…and helping other kids. In my line of work, we help kids that need a little “kickstart”. Knowing that she has been able to help some kids with her role modeling and Love is something that I will hold close to my heart. She is my caring, kind, graceful, loving dragon.

Maya also had a visit from the super star, Miss Gina…her dance teacher. I have known Gina is magic since I was a little girl myself…but I never ever knew I’d see it so clearly. Today Maya danced. Oh she danced and made us all cry. I witnessed shuffle hops, and toes, and a whole two minutes “happy little ditty”. My heart is more full than ever before. Everyone was so surprised with how much energy Maya had. This child! She never ceases to amaze me.

When Scotty asked who had come for a visit today…Maya gave quite the recap. My favorite part was when he asked who Miss Gina came to see…Maya said “both mommy and me”. Yes. This was so true. I have longed for hour long conversations with the Miss Gina I know. I have longed for her movement and choreography. I still long for those things…and one day I know it will happen. But today, she gave me more than all that. Thank you Miss Gina for reassuring my little girl that she IS a dancer. That she has the strength to keep dancing. As Scotty has said before…”it’s in her blood”. It is also in her soul. There have been a handful of people who have nurtured the dancer in me…I’m just so grateful that Miss Gina can also nurture the dancer in Maya. My heart sings.
Love is Life.