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Mar 12, 2016 (Sara)

Today was one of a kind. Maya has been more…shall we say playful? This is all very relative but I’m trying to be positive. She has requested visiting the play room more often and I think Bapa Pat read her at least 4 books today. She let me braid her hair again and we actually had a movie night tonight. While the last couple days have been mostly filled with lethargy and some tears, the days contained many sweet moments and some giggles too.

Auntie Megan and Liam came for a visit yesterday and Maya loved watching the boys play. Auntie brought some treats and food. Maya ate so much lemon ice in the hospital we all thought she would jump for joy with “auntie-made lemon ice”…well decadron had other plans…like crying. We re-named the Lemon ice “lemo-licious” but it still took some time for Maya to warm up to the ice. So weird how these steroids are. Tonight we requested not only auntie’s yummy soup but a big helping of lemon ice. I also enjoyed some (okay two servings) of lemon ice.

Back to today. Today was a lab day. I find myself living in a strange limbo: “lab day, no Lab day, no lab day, Lab day, no lab day…etc”. Then on lab days I’m glued to my phone waiting to hear from the clinic. Our new life is one that we cannot be surprised to hear we must spend our Friday evening at Renown getting a transfusion. But..not today.

Today Maya followed her amazing channel of greatness with strong lab results. All of her blood counts have increased and are showing wonderful “blood recovery”. This increase indicates that her bone marrow is clear enough of leukemia now that it can produce a more healthy amount of hemoglobin and platelets on its own. It’s fantastic news.

At first, I got pretty nervous to see the jump in blood counts. I just keep hearing the doctor’s voices in Oakland saying they were happy seeing her counts drop. That it means the chemo is working. The clinician in me knows that she probably bottomed out but the perfectionist mother in me wants to see zero or something. WBC @ 0.3 wasn’t low enough for me?!?! The natural optimistic mommy in me had to talk the scared mommy in me out of freaking that it might mean the chemo isn’t working.

The roller coaster is almost too much sometimes! I spoke with the clinic RN and she assured me that the jump in counts are exactly what we want to see at this point. Phew.

Her white blood cells (WBC) increased as well and contribute to an ANC of 588!!!! This is technically out of isolation! This means that Maya actually has some line of defense if needed to fight infection of some sort. This means the dragon is getting stronger and is harnessing her fierce fire. She has broken ground on her new castle and the scaffolding is set. This means mommy can take a breath too….

Motherly assessment: Hgb: 10.2, platelets: 105, WBC: 2.1, ANC: 588!!! Liver enzymes continue to be slightly elevated but stable. Appetite…still very good but I dare say slightly decreasing. Pooping is way more frequent and appears comfortable…though with as much food as this child is consuming, I wish it was 5 times a day (yep, I went there…Imma dietitian). Belly continues very distended. The last girth measurement I took was 64cm. This is a 5cm increase. Her face fills out more and more each day. I ask her every morning if she is “full moon yet?” And she says no. We are really looking forward to a nice long break from the decadron. The picture i posted is our MAR… medication administrations record. I don’t know how other people keep track. It is hard.

We are so happy that she is going into the weekend and her procedure with these numbers! Now we want some good news next week too!!!

P.s… I texted with Heather. Alicia’s mommy. Wonderful news came from their world. Alicia’s results showed that she had 0.01% leukemia in her blood. This means remission with standard risk! Im sure they are all celebrating this weekend. I certainly celebrate for them.

Mar 9, 2016 (Scott)

I can’t help but look forward to next week’s trip to Oakland. It marks the end of induction, and more importantly the end to 28 days of twice daily Decadron (steroid).

Our day to day activity is focused on dealing with the side effects of this drug therapy. Maya’s appetite is huge and, even at 230am, is insistent. Last night she ate two helpings of leftovers at 10pm, woke up at midnight for a snack, then woke at 530am for an hour-long meal that included trail mix, chips and salsa, pasta, rice, and pickles.
The effects of the steroid are cumulative, and in the past 10 to 14 days we’ve seen the visible ones increase quickly–moon face, distended belly, overall weight gain. This is all within the range of ‘normal’ for this drug over this length of time. Knowing that it’s normal and that there’s a good chance she’ll be reversing these changes over the next few weeks keeps us calm, but weathering a steroid induced fit in the wee hours of the morning caused by the fact that we’ve run out of crackers is so much harder when you struggle to recognize your own daughter’s face under swollen cheeks and eyes.

Sensitive emotions and mood swings are also well within the normal range. We still push Maya to be polite and ask properly for things she wants–but she get to have most anything she asks for. She’s can be upset to the point of tears pretty easily–for example if Pelei (our dog) decides to slyly adopt one of Maya’s new stuffed animals. What’s interesting over the past bunch of days is that Maya appears to be understanding and working to control some of these over-sensitivities on her own. Through all these weeks of uncertainty and numerous toxins flooding her veins, she’s finding her own way to adapt and embrace the life going on around her.

Today Pat (Sara’s Dad (and cape-less superhero)) and I spent the day with Maya and Linco while Sara was at work. As we alternated between cleaning and food preparation through the day, we watched Maya push away from listlessly resting on the couch and begin engaging in play time, stories, conversation, and creativity. She looks pretty rough around the edges, puffy and bruised and slow moving, and I can’t imagine she feels very energetic, but her desire to make the most of a day at home with her Grandpa and little brother couldn’t be held back. She spent time in the toyroom playing with Lincoln and reading books with Grandpa; she reclined on the couch with Pat and me and made conversation and told silly stories; she even began wandering around and exploring for new things to do.

Consciously or not, Maya is determined to live and enjoy her life whenever she can. She’s not waiting for her belly to shrink or her swelling to subside. She knows we’re heading back to Oakland in a few days, and despite our hopes, none of us know exactly what course that visit will set us on. I know Sara and I both struggle with the desire to fast forward this difficult stretch of time, to get nearer to health and real life. But we also know that there is living to do right now. Lincoln and Maya are growing up–they’re playing and laughing and bonding more each day. I realized today that for Maya, the path of least resistance is to embrace the love, to engage in the life around her despite all the rest. I’ve been wearing an orange wristband that says ‘strength’ as a reminder for myself–I’m so thankful that Maya doesn’t seem to need one.

Motherly assessment (Feat. Father)… On Tuesday Maya’s ANC had jumped up to 280. This was a nice surprise since the previous Friday it was 12. This needs to be north of 500 for her immune system to offer any real protection, but I think it gives some indication that she’s responding. Her platelets had dropped from 149 (after the previous week’s infusion) to 92. Platelets only last about a week, so this indicates that she must be making some of her own–also very good news. Her hemoglobin was 9.6 which was about the same as Friday. Overall, this seems very positive–more positive still is the fact that we didn’t see any negatives. Sara and I are cautiously optimistic knowing that there is much uncertainty just ahead. We thank you all for your comments, thoughts, prayers, support, love… we’re reminded often that we are not alone, and daily that reinforces our strength, hope, and faith.

Mar 7, 2016 (Sara)

I communicated with my new friend, Heather, about her little unicorn, Alicia, today. I mostly wanted to share my support since today is Alicia’s Day 29. She went in for her bone marrow aspiration and spinal tap to determine if the chemo and drug therapy worked. Of course there is a wait..:I mean of course! My fingers and toes are crossed for them to hear Alicia is in remission so they can move past this intense and altering induction phase.

Maya’s Day 29 is a week from tomorrow. I feel so conflicted with the way I look at this entire fight. I am a person that believes life is about the journey and not the result. This is hard for me these days because I find myself longing for these days to be over.

But…”when these days are over” Maya will be almost 6. Lincoln will be 4. Time goes fast enough without me trying to “will” it to go faster. I’m having a hard time finding a balance in my attitude and outlook. I know we are in week three of this so I should slow my roll but…its so hard for me to not want to fast forward just to next week when she no longer has to be on this intense of a steroid regimen.

At the end of this phase there is another. And another. And another….another, another and another. Then I think we are in “maintenance”. Hopefully. Since they don’t really know which path Maya will follow (day 29 results will tell us), I truly have no idea what our future looks like. What I do know…there will be chemo and steroids.

There will be higher ANC’s and possibly lower ones (well…we may have bottomed out, I mean she really can’t get much lower than 12). There will be hair loss. There will be trips to the ER and to Oakland. There will probably be struggles with wanting to travel or go see friends. There will be isolation days. There will be times when I feel like I can’t keep my child from going hungry. There will be other times when I will beg her to eat. There will be more pokey butterflies. There will be more days of drooping eyes, tingly fingers, atrophy from walking and moving very little. Her belly will expand even more. Her cheeks will continue to grow into a full moon. She will need an abundance of medications just to manage the side effect of her treatment. There will be more tears.

All these things – and more- are what make me want to close my eyes and fast forward 2.5 years. But again…if I (if we) don’t embrace these days that we have. We lose a very special time in our kids’ lives. In our lives.

Lincoln just started to walk. He is a super champ and gets SO excited to throw his arms up and toddle over to me. My heart melts. There are so many more milestones for both Maya and Lincoln. I remind myself of this every day. Every change I see in either of them. A new word. A new laugh or giggle. The amazement of the falling snow. The rare but wonderful times Maya wants to go to the play room, even if it is to lay on a pillow and watch.

Sometimes…often actually, Maya has a very strong “mommy aversion”. I know deep down that it’s mostly the decadron having influence but the “sting” I once mentioned has become a burn. There are times I want to scoop her up in a blanket and cuddle in bed like we used to. All day. There have been other times that my mommy instinct is so strong that I want to put my baby to the breast and comfort her like I did less than a year and a half ago. Because the boob fixed everything back then. I fear I might have lost some of her trust because I was the one who took her into her procedures. If this is the case, we will both heal. I have faith we will.

For now though…I barely get hugs. I know I have said it before but, I am truly grateful she has a daddy that loves her as much as he does. And is as available for her as he is. And for me. Because we both need him. We all need him.

I DO get “I love you mommy” many times during the day and I hold on to her for as long as she lets me. I think it might be getting a little better since she actually took my suggestion of popcorn and strawberries rather than cheesy eggs for her 1am night feed last night. And today…she let me braid her hair.

My heart sang with each and every piece I collected and added to the braid. With every section I had to wriggle a solo strand out from between my fingers and into the trash can. I tried to do it as discreet as possible but Maya is too observant. There were no words exchanged about it today but we both knew what was happening. She picked the more gentle hair tie (rather than the rubber band style) because the other ones “really hurt when you pull em out”. Right as I finished her French braid, she stopped my hand before I put the hair tie in and said “mommy does it look like Elsa’s?”. I almost lost it but instead I focused on finishing the hair tie without pulling too many thinning hairs out. Then she looked up at me…I placed her round face in between my palms and I realized I was holding a Goddess. She looked as beautiful as the waxing moon just before she’s full. I said “yes little love, just like Elsa’s”. The dragon is fighting. She is in an epic battle and each day she grows more fierce rather than weary. She makes me want to be more present than ever. Even if the days are hard and painful – I want to feel them next to her. Love is Life.

Motherly assessment: tomorrow is clinic day. Hopefully her platelet held and we won’t need to kick it at the hospital all day. Her belly is growing but I think we are on the road to controlling her poop situation. Vincristine (the chemo) effects the nerves in the body. Her feet seem to be okay but she complains about her hands and fingers “bleeding”. They aren’t bleeding but we’ve talked about the tingling sensation. She is still walking though the doctor said she might not soon. Her eyes are droopy. Her belly is covered with petechia – she noticed it yesterday and we had a long conversation about it. All of these things are “normal”.

Mar 5, 2016 (Sara)

Even with Scott’s wonderful words expressing how grateful we are, there truly is no way to do our feelings justice. The fundraising via Go Fund Me, Yogurt Beach, the leukemia bracelets, Nature’s Bakery donations, and anything else people have worked on or are working on…it is all truly amazing and inspiring.

This truly is not about the money. This is about the powerful Love that we feel In the deepest parts of our heart. It is about the sense of security and ability to try to protect our child (and her brother) from the unknown as well as prepare for the inevitable. It is about knowing that we have the resources to purchase the right tools as well as the right care to promote the best possible outcome for our little girl.

This is about community and the restoration of faith in humanity. I have said it before and I will say it again, my people are a great people and I am lucky to have you all. You have proven to not just our family and our own community but to others distanced by land, water, and life.

I have asked myself lately, “what have I done to deserve this”…. I am not talking about the child with cancer – those type of questions are moot. I am reflecting on the amount of support. I know that we are good people. I know that we give support to people when we can and feel it best. I know that a child with cancer can bring out some amazing magic. Even the thought that Maya is so awesome and darling and cute…and fun and smart and caring…and funny…it just doesn’t add up. This feels like too much. It all feels like too much. I truly hope we will be able to thank each and everyone of you. I just don’t have any idea how to do that.

This support, your support, is the fire filing Maya’s breath and fight. It is the water protecting her castle while filling a deep moat.

Maya is still building her strength. Her blood counts and energy might be low but her spirit is not weak. She is physically changing but only for a time. This is a battle of stamina and when I feel like mine is running dry, I look to her and gain it back. Maya is running on fire and water and both elements exude through her eyes…her soul. Her spirit and light are lit from the love from all of us and is bright enough to be seen from lands away. No fear little Dragon. You have an army built of warriors of Love. And they fight for you. We fight for you. And we fight together. We are stronger than I can even imagine.

Motherly assessment: Her labs came back yesterday – Hgb: 9.7, WBC: 0.6, Platelets: 149 (yay for donors!!!), ANC….12. To be honest, I’m not sure there is much difference between 12 and the 50 she has been cruzing at but, she is pretty much in a bubble. A bubble of love as well as disinfection. She has the ravenous appetite like the dragon she is. Belly is still distended and her petechia is slightly worse. We called the on call oncologist today…sounds like she is still with in normal expectations for induction. This is nasty stuff but we are hoping that in 10 days we’ll hear the wonderful word …remission. Then the battle will take a new turn.

Love is life. Thank you.

Mar 5, 2016 (Scott)

My own experience of Maya’s illness and her treatment so far is curious. Time moves fast, and it also moves very very slowly. We’re so thankful to have a clear pathway of treatment before us; but then there is to deal with every moment along the way that is hopeful or uncertain or just scary.

Maya has started to learn about what she’s dealing with. Truly, it amazes me that she could have fought so hard, over many weeks now, not knowing what she’s fighting against. Maybe for her it’s simple–she’s fighting to feel better. Or maybe she’s fighting to wipe the weary looks off her parents’ faces. We’ve started to talk in some detail, when the mood is right, about what has gone wrong with some of her cells. I’m sure I do a poor job of explaining (full disclosure I earned a D in Cell and Molecular Biology), but she listens and seems to accept most of it. She knows this thing has a name–Leukemia. And she knows there will be more meds and pokey butterflies on the long, long road to overcoming … I just realized she may see this as a road to overcoming pokey butterflies… and I might see it that way as well.

Sara and I have started to learn that a challenge like this can both pull apart and bond a family. The tendency, at least for us, is to divide up tasks and take on the necessities as efficiently as we can. At a time like this there are new necessities every day–so many that Sara and I might soon not recognize each other. Our Community–our extended family–has done everything within its power to ensure that those worries that would pull us apart have already been taken care of. It’s possible there are no words to express the depth of our gratitude for this, but I will try at least to express what it means: This support has allowed us to focus on providing the best care for Maya, to keep our two kids growing up together each day, to begin settling into a new home, and to be free from worrying about immediate financial issues. This is more than support, more than a safety net, this is a bullet-proof shield-wall of kindness and love, praying, working, and fighting to protect a three year-old girl from sickness and fear.

With your help we’re succeeding. It’s still early, and there are twists yet to come I’m sure, but Maya is stronger for all your efforts. There is great power in Community, and to be the beneficiary of such power may still be indescribable. At the very least, it is humbling to the very foundation.

Maya, Lincoln, Sara, and I all ate frozen yogurt around the table tonight. Maya insisted that she sit on my lap, and she also insisted that she should have one of the pink spoons. She had chocolate-mint with broken pieces of sugar-cone on top, and it was very quiet at the table during this… thankfully we were delivered a large amount of yogurt. We saw some pictures of the scene at Yogurt Beach around the same time–orange balloons, bracelets, families, people everywhere. These snapshots don’t do it justice, I’m sure, but to see the smiles of those who showed up to support Maya hints at the energy that has been gathered to help a little girl fight an awful illness that no child deserves. In these pictures, Maya saw family and friends from every corner of her little world–perspective on this kind of thing is something even adults struggle with, so I know it’s hard for her to understand, but I know she’s starting to connect these scenes and use them to color her experiences. She may not know exactly what she’s fighting against, but she knows very well who is fighting with her.

Thank you.

Thank you to Yogurt Beach for your unbelievable generosity and to Swayzee Elefante for your dedication, energy, and caring (I told Maya you might visit later on–she demanded you visit ‘right now!’). The pictures alone from the event are uplifting. We wish we could have been there; we promise to visit as soon as we can. The yogurt was absolutely delicious (the coffee flavor was outstanding).

Mar 4, 2016 (Sara)

I can’t believe I forgot to say THANK YOU yet again to all the support. Yogurt Beach is fundraising for Maya tomorrow – Thank you Swayze and all involved. I seriously don’t know what we did to deserve all this love and support but…thank you. I wish we could come out tomorrow but I get a little nervous with how low Maya’s ANC is right now. Some of my colleagues have offered to bring us some FroYo 🙂 We’ll enjoy with you all.

Mar 3, 2016 (Sara)

Since Maya’s first visit to the clinic, she has done pretty well. Scott and I still feel a little uneasy with Maya’s belly distention and she continues with some petechiae on her belly too (this looks like polka dot bruising). Since she has such low platelets (she was 2 before her platelet infusion), she bruises super easy. I called the RN at the Reno clinic to make sure it was a okay to still see the petechiae even after the transfusion. A very common answer to some of our questions is “keep your eye on it”, and that is what we heard. I would usually not accept this answer but…now that I have a child with cancer, it feels like we would be in the ER twice a day if we didn’t hear “keep your eye on it” for some things. Thank goodness for professional with experience with this. The nursed ensured we were getting her labs checked again soon (tomorrow) and said to tell LabCorp to order them “stat”. I think it is for reasons like this that she is monitored twice a week.

It was really fun seeing a glimpse of Maya being a kid the last couple of days. I can’t really say that she is feeling any better but I think she has become very bored with feeling crappy. Yesterday we spent some time outside and in the play room…at her request. She decided she wanted to change her clothes AND she found her rock’n’roll head band and wanted to rock it for a while (be sure to check out some pictures). This has definitely not been the norm. I laughed out loud when she came in from outside and said “so…mommy….what should we eat?”. Hahaha. I mean really child, you must be hungry since you haven’t had a snack in 45 minutes! They warned us that she’d want salty fatty foods but I wasn’t thinking MY child would. I have been humbled yet again. Dang.

Scott and I have both made it to work for a while today. Easing back in…

After a staff meeting at NEIS…I cried. It feels so weird to say that but I think I needed to talk more than I thought I did. Is Work Therapy a thing?

Speaking of work…I actually gave notice to Carson Tahoe today. I cried as I wrote my letter of resignation. I just can’t be a good part of the team there since I would be frightened that I’d bring something home to my chemo kid. Reality is…it could happen from any where, any time, from any body but I have to eliminate the chances some how. I love the ladies that I worked with there. They are far more than my colleagues. They are part of my support system, they are my friends and mentors and I will miss the days that I get to spend time with them and learn from them.

Motherly assessment: Appetite: omg can this kid seriously eat this much? We’ll see labs tomorrow – I’m sort of nervous since she continues to bruise a little. By nervous, I just mean I anticipate more transfusions. Over all – she continues to rest a lot, eat a lot, and play very little. The bottle of decadron is dwindling…and I can’t wait to see her feel better.

Mar 1, 2016 (Scott)

Today was our first visit to the Reno clinic for blood tests, chemo, and a transfusion. We arrived at the clinic just after 8am and were headed back home about 330pm–a very long day for a little girl on a variety of drugs including a morning dose of miralax and colace.

Not long after we arrived, Maya’s buddah-button (meta-port under the skin on her chest) was accessed. This looks a bit like being stabbed just above the heart with a two inch long curved needle. I’m thankful Maya couldn’t tuck her chin down low enough to watch–I sort of wish I hadn’t. The upside is that all the blood draws and IV drugs can go through the port, and the ‘pokey butterfly’ need not make a visit.

The blood test results were about as expected–ANC around 50 and hemoglobin at 9. Platelets were also low, in fact listed on the report as ‘panic low’ at 2. We’re thankful to all the blood donors out there–within a few hours United Blood Services had delivered a platelet transfusion that brought Maya back up to a more normal range. We’re entering the third week of treatment where, if all goes well, we might begin to see Maya maintain or even improve some of these numbers.

Today we were happy to finally meet our Reno Pediatric Oncologist, Dr. Salo. She was helpful, reassuring, and Maya was comfortable interacting with her. We talked a lot about the more troubling side effects of the drug therapies like belly distension, pain, constipation, stratospheric appetite, and general surlyness. What worries me most is that these effects are described as ‘cumulative’–through two more weeks of induction therapy, daily Decadron and weekly Vincristine, we may see the severity increase. Overall though, Maya is handling everything very well. She’s strong enough physically and mentally to handle the next two weeks; our challenge is to ensure Sara and I can match her fire.

We started on Beads of Courage today. Kids get a glass bead for each obstacle (treatment, procedure, pokey-butterfly, test of courage) they overcome. In filling out the chart with dates and details (pictured above), we discovered Maya had already earned 79 beads. Kids ought to get a medal for working though something this tough, and this way they do. While we waited through the treatments today, I read about a little boy named Dawson who was born with two types of cancer; he was known for consistently coming out of procedures at Oakland Children’s Hospital with a smile on his face. Dawson earned 397 beads before his first birthday.

I’ve said it before–I’m eternally thankful for all those who work tirelessly for the health of all these kids and the care givers everywhere who ensure that no matter what happens, these kids don’t have to be afraid.

I also read that each year around 10,000 kids need a bone marrow donation. Only about 5,000 get one.

A quick thank you to the staff at the clinic, the infusion center, and the kitchen at Renown. We were there a few more hours than expected today, but they all went out of their way to make us feel welcome and comfortable. Maya sampled (voraciously destroyed really) a good portion of the menu offerings. She particularly enjoyed chicken fingers, fries, spaghetti, fruit, pizza, pretzels, juice….

A huge THANK YOU to Nature’s Bakery, the Marson Family, and the Carson Aquatic Facility for amazing generosity. Nature’s Bakery’s delicious fig bars have been a staple in our pantry since Maya was very little; it’s great to have such a wonderful business with wholesome products as a member of our little community, and we’re grateful for their contribution to Maya’s fight. Some years ago, Sara and I met while working at the Carson Pool (nearly twenty years ago yikes). Even after so many years, the place, the people, and the relationships we’ve forged there still continue to sustain and support our little family. Recently my idea of what is family has undergone a significant transformation. Thank you all for caring for Maya and for helping us like family.

Mar 1, 2016 12:34am (Sara)

Today was good. She continues with most of the issues I spoke of yesterday but we did find some smiles today. In fact, one WONDERFUL smile came from seeing a picture of her brand new Leapling baby cousin born this very afternoon. His name is Arrow and we are all very happy for Auntie Page and Uncle Ivan…and for us. What a wonderful thing to celebrate amidst a very difficult time. New life. New hope. More fire.

We had good moments today…In between the tough ones but still good and worth focusing on. We had wonderful visitors today and while Maya can’t really interact with many people…I needed the hugs.

Maya’s belly is still so tight and distended…couldn’t be from the mass amount of homemade pizza she had today. OMG she is eating more than I ever thought possible.
She is fiercely attached to her daddy (it is certainly mutually beautiful) and while I don’t take it personally, it definitely stings sometimes. I do get brief moments of snuggles and “mommy will you rub me please?”. Mostly when Scott is not available but I’ll take what I can get.

Tonight we had bath time. It was nice (for me at least). After bath, I let her choose which lotion to put on her big ol belly and painted her nails. She was so sweet and loving.

One memory I never want to forget: I was brushing Maya’s hair after I washed it in the bath…she usually cries like crazy but tonight I had her just hold a wash cloth over her eyes and she leaned back on me. She said she felt like she was floating and it wasn’t until I said “well baby, you ARE floating” that she got uncomfortable. Leave it to mommy to blow it. Ugh.

Anyways, I was brushing her hair and I said “baby girl, your hair looks like it is thinning a little. Do you know what that means?” “No”. “It means that it is kind of falling out because of the medicine but it will grow back, promise”. Then she said “yeah, it will come back, mommy. And when it’s all gone me and Liam will both have no hair”.

Liam is my bestie’s baby boy. His motto is “no hair don’t care”. We never knew how powerful it would be.

She didn’t say the comment with a smile…the tone was more realistic. I sometimes find myself in shock with how brave she is. And how intuitive a 3 year old can be. I see her face these days with this look like she knows the inevitable. I wish I could make her inevitable filled with more bubbles and glitter than the harshness she is facing. I see her her swollen face and belly and ache for her. My little beautiful dragon. My brave courageous fighter. She doesn’t know how to be anything else and I’m so jealous of her strength.

Feb 29, 2016

I had someone reach out to me today. Her name is Heather and her daughter, Alicia, is fighting the same battle Maya is fighting. My cousin, Tami, got me in touch with her on Facebook and she actually messaged me today. Check out Alicia’s Hope if you have some time; she could use some love and prayers too. From what I understand, Alicia was diagnosed on February 7th…Lincoln’s birthday…then discharged on Thursday (the day after we got home). Her message today came at a perfect time as Scott and I have been a little concerned about Maya.

I mean…well…shit right?  Of course we are concerned but today, I guess, we were wondering if what Maya was experiencing was “normal” or “expected”. She appears to be uncomfortable most of the time, she doesn’t really engage in anything, she isn’t interested in the things she usually is…like Frozen, her belly is really distended…like really bad…imagine my belly at 8 months preggo, she needs major encouragement for walking up or down stairs…and actually walking anywhere, she sometimes finds some interest in wanting to lay down in the play room to watch Linco play but hasn’t played in a couple days, she doesn’t want to send any video messages, she isn’t interested in pictures, she wakes up starving, her cheeks are starting to swell into “moon face”, her hair appears to be thinning though I can’t find it anywhere…and omg is she drinking enough fluids????

We don’t have a specific doctor here in town (though I really wish we could just call our amazingly-awesome-so-happy-to-have-her-cause-our-daughter-is-gonna-be-okay-because-of-her pediatrician) and are supposed to call Children’s Hospital Oakland for any questions or emergencies. While we felt a little strange calling today since Maya was actually doing okay and didn’t have a fever…we are those parents so we did. Scotty called and didn’t talk about all of the concerns mentioned above but he did talk about our main concerns (lack of drinking, overall mood, and belly distention). The doctor was really kind and listened to Scott. She was a Fellow that we had not met before but reassured him that it sounds like somewhat expected behavior and symptoms. Of course we are watching her closely but it still makes us uneasy to see her like this. The doctor gave us comfort and told us to call with ANY questions or even if “we just need to talk”.

Back to my new friend, Heather. She reached out to me today to ask how our transition home has been. She mentioned her concerns of Alicia being withdrawn, talking very little, and not being herself. Alicia has a twin sister who is having a very hard time with her behavior. She also has a big 6 year old brother that is missing her too. It broke my heart to hear this but it made me feel like we aren’t alone. It helps to hear a doctor tell us that this type of behavior “has been seen” while on decadron but it helps even more to know that Maya isn’t the only one.

I wrote back to Heather and this is what I wrote: I can tell she is depressed and the only smiles we see are rare (though I think there is something sweet about them since only baby brother has gotten her to smile). Her belly is very distended and I can tell she’s uncomfortable. Her appetite is great (phew!) but I’m really having to encourage fluids. I’m so scared of hard poop!!! I’m also fearful of atrophy in the muscles since she hardly ever wants to walk or play. Breaking my heart! My husband, Scott, actually called the children’s hospital today because we have been so concerned. We felt weird about calling at first since she doesn’t have a fever but…well we just needed some reassurance I think. From what we understand…this can be normal. We try to talk her into reading but really monsters Inc, Diego, Land before time are constantly running. She doesn’t even want to watch Frozen!!! It makes me scared because that is all she wanted in the hospital! I hope that after the first month of decadron they will bounce back. I’m so sorry to hear that Alicia is feeling the same. I also miss my sweet sassy lil dragon.Oh…and her cheeks are starting to swell and hair is already thinning a little. I feel like the hair loss is superficial compared to all the other things she has to go though but…she just got her hair. And she really likes it. Breaks my heart.”

I hate to say that I know another little 3 year old going through the same thing…I hate it. But among my hate I feel strength…I have faith that Maya is building her Dragon’s Army and maybe…just maybe..she can give some strength to Alicia too. Maya the Dragon Princess might have an ally and another Dragon to go to battle with. Maya’s prognosis is good. Its great. I keep telling myself that. But reality is it will take a marathon to get her there. If I can find another little girl that makes Maya feel “normal”..or “special”…then I will find courage to continue to fight next to her. She is my power. She is my fire. She is my health. Love is Life.