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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.

A motherly assessment

Feb 27, 2016 (Sara)

Lincoln is working on a few new teeth so sleep might not be on my books tonight. I thought I’d Update.

So we (well Maya) had lab draw this morning. It was rough on Maya only because of the suspense. She hasn’t had a pokey for a while now that she has her Buddha button but her port can only be accessed at the clinic and not at Lab Corp. The phlebotomist was kind to take his time to ensure he only needed one poke but…this meant more time. The pokey butterfly was endured and she quit crying the second she got stuck. He was impressed.

We got good news from the clinic. WBC increased a little to 0.4- I was a little confused since we were told to anticipate seeing “0” WBC but the RN said this number will probably drop again this week since she just got vincristine on Tuesday. Also, since she didn’t get blood assessed yesterday…she might have been 0 and we didn’t know it. Her platelets dropped to 35 but no need for transfusion yet. ANC is 52 (again this is the number we need to be above 500 for her to fight any type of infection). When she was admitted, her ANC was 250. Sigh….The good news is her Hemoglobin (Hgb) increased to 10.3!!!! This is fantastic actually since she was 8.9 on Wed. At our discharge meeting The Hematologist said we’d likely start to see a little “blood recovery” after two weeks of chemo initiation. It hasn’t even been two weeks and the RN I spoke with today was really impressed that her Hgb increased with out a blood transfusion! As Scotty journaled, she isn’t feeling very good but…I guess we cant expect that yet.

Appetite continues to be ravenous but starting to expand to her more usual repertoire, she requested the left over artichokes from dinner last night. Not new weight- I think I will check her tomorrow. We are pushing fluids and I was so distracted about the blood counts that I forgot to ask about her phosphorus level and renal function…I guess that is why clinicians shouldn’t care for their family.

I stopped by work today. Had to finish up some things. It felt good to connect with some of my colleagues. Thank you for listening, crying with me, consoling me, believing in me, and distracting me. I am so blessed in so many many ways but one of my many blessings is NEIS. I have the best job and the best work family. Maya loves the gifts and I love the support. Love is life. Goodnight.

Energy and Spirit

Feb 26, 2016 (Scott)

It’s so nice to be home and free to move about. The new house has a formal dining room which is overflowing with toys–it’s better as a playroom anyway since there’s nothing formal about dining with a 3 and 1 year old.

Maya’s energy has been low. We left Oakland expecting she’d need another transfusion of red blood cells soon, and it’s likely the altitude made things even more difficult on her. She naps off and on through the day. The daily steroid treatment makes her restless, but she doesn’t have much energy to do anything but lay in bed or on the couch.

Yesterday after Lincoln woke up from his afternoon nap, he and I were playing ball and exploring together in his new room. Maya heard us from the princess room next door; she pulled herself out of bed, walked slowly into Lincoln’s room, and stretched out on the floor. Lincoln immediately flopped on top of her–they both laughed and jibber-jabbered away in ‘Lincoln language.’ Maya didn’t have the energy to rough-house, but she asked mommy for a pillow so she could be comfortable on the floor while playing ball with her little buddy.

Maya’s body is working hard to recover the healthy cells that have been crowded out by the leukemic ones or wiped out by the drugs. But her spirit is healthy and pushing to play, explore, and connect with her new surroundings and her family–especially with Lincoln whom she missed so much over the past twelve days. It’s hard to watch her toss and turn in bed through an entire afternoon, but all the while she talks about the things she wants to do–play with Bapa (Grandpa), go to Home Depot with me (she loves that place, and why not–it’s awesome), or go outside to blow bubbles and watch Pelei (our dog) lose her mind chasing them all over the yard.

Through all this, energy will come and go, but thankfully the dragon spirit is constant.

Thank you all so much for your kind words, prayers, and humbling generosity. Having left the hospital there’s this natural feeling that the struggle is over–that all is okay now and Maya will be right back to normal any moment. Of course, the reality is that we’re still at the very beginning, and our lives have been flipped sideways. It’s scary to think about what may be ahead, but the collective focus of so many who would go so far out of their way to offer a helping hand gives us confidence we can handle what may come.

We are forever grateful.

(These photos are from this January on Kauai)

The Dragon’s Den

Feb 25, 2016 (Sara)

I think I could oscillate my gawking between Maya’s room and the master bedroom (and the closet!) for 6 months and still never get sick of it. My heart is over flowing with how comfortable this place is. Last night we walked in and at each step I loved it more and more. It was in Maya’s room where I lost it. You know, I try to stay as strong as possible in front of the kids but…I opened her dresser and saw that her clothes were folded and placed with care. This work and love is consistently felt through out the entire house. Each drawer is filled with our things plus a little extra love.

My knees almost buckled from under my heavy heart filled with gratuitude, and if I wasn’t in front of the kids, I would have melted into the Earth. I couldn’t hold back the tears and when Maya asked why I was crying I had tell her, “because we are so loved and it’s the most beautiful thing I’ve ever seen.” I mean that with every cell of my body, thank you.

The house is amazing. We are entertained at finding things and while moving into a house this way slightly adds to the whole surreal feeling, we are all settling in wonderfully. It will be a story we will tell forever. The story about when Scott and Sara bought a house, but our people made it a home. Thank you.

The house is incredibly clean. Having a kid as delicate as Maya is probably the most frightening thing I have (and hopefully will) experience. Our lives have quickly turned into a “when she goes to ER” and not “if” and I have to consciously try and not think about that looming in our future. Knowing that our home is as safe as can be lifts some of the weight from my shoulders. Thank you.

The dragon’s den is ready to protect, heal, re-energize and charge our Dragon Princess. She is comfortable in her space and wanted to sleep in her own room…even fell asleep on her own. We all feel safe and loved. Thank you more than words can express.

Motherly assessment: no labs to determine blood count status at this time….Ahhhhhh! When we left Maya was doing well and responding to the chemo like an “A+” student. Platelets don’t hang around long so we are going into LabCorp tomorrow early for some “stat” labs. This will determine if we need to head to Reno for a transfusion. One of the hematology attending MDs changed her schedule so she’ll be on a Friday and Tuesday lab draw schedule. This is perfect since she gets chemo infusion every Tuesday and they will have access to her Buddha button (port). This means she’ll only have one “pokey butterfly” a week….access will be uncomfortable too it at least there is a numbing ointment she will use.


Feb 24, 2016 (Scott)

Walked into our new house and someone went and made it a home.
Now I’m standing in line at the pharmacy to pick up a bundle of meds.
So thankful for family friends modern meds and the strength to move on to the next.
Thank you.

Heading home

Feb 24, 2016 (Sara)

Well…here we go. We are heading home. Driving on the 80east as I type. Hemoglobin held over night at 8.9 but her platelets are tending down. 54 this morning. WBC is 0.3 today. Stay labs for Friday to make might need some platelets over the weekend.

The adventure continues.

Day 8 – Done

Feb 24, 2016 (Sara)

Day 8 is now almost Day 9. Two days ago, I would have said that I was more nervous about Day 8 than Day 9 but…well now it looks like we are discharging on Day 9 and it sort of makes my stomach queasy. A part of me is amazingly thrilled about going home. About seeing Maya see Lincoln – I know imma cry so bad. Excited about seeing our new home that my besties et al have set up, sanitized, and made comfy. About seeing Pelei the Poof…I miss her so bad. About sleeping on my sleep number, next to my amazing husband…also probably with Lincoln…also probably with Maya. Happy to eat home cooked food, drink a glass of wine, omg poop in my own bathroom. A part of me is really so eager to be home I can almost taste it. Then there is another part of me that is frightened. So frightened of so many things. I could mention the list of things I’m scared of but I actually don’t want to…I believe in the law of attraction and while I can’t seem to shake the fears out of my mind, I’ll avoid listing them. I’m fairly certain seeing the list would frighten me. I know we have the most amazing support a family can ask for. You have all proven that our people are a people of Love. I was raised with Love and encouraged to surround myself with Love. This has never been more evident in my life. I truly don’t know how to thank everyone.

My parents have been a strength like never before. They came to catch me when I was falling as they always have but this time…it wasn’t just me. While I’m not sure I will ever be able to express how much it means to me…I hope they can feel my gratitude in the hugs, tears, conversations, and silence. I understand this support will not end. I know we can do this. I know Maya is a Dragon Princess and she will give us the strength to do what we have to do.

I know that there will be good days, bad days, great days, scary days…we are hoping for wonderful days too. Maya and Lincoln will have a very different childhood. Very different than mine, than Scott’s, than most people I know. As Scott reassured me today while waiting for Maya to come out from her procedure…we are shaped by our experiences. After losing April (my childhood best friend) to brain cancer, I was different than I would have been if I didn’t lose her. I hold on tighter to those who I connect with knowing that it might be the last thing I do. I am grateful for the vast appreciation of friendship I gained from knowing her. I grew up to be the woman I am because of her…and because of the experiences she endured and I witnessed. I have to support Maya through this journey of hers. This is her Dragon tale and we all characters in her adventure. I want to be the Knight fighting beside her as much as I want to be her Dragon den where she goes to rest. I know we all will have a part in her story and I am so unbelievably, speechlessly, amazed at how much we have been Loved. Thank you from the bottom of my heart again. And again. And again.

Motherly assessment: LP (lumbar puncture) with chemo today. Introduced methotrexate into the spinal fluid. Infusion of vincristine (chemo) via buddah button. Hemoglobin 9. Platelets dropped to 85. WBC 0.4…ANC is not able to be calculated (aka: nada, zip, zilch). Appetite – ravenous though specific (continues with desire for noodles with butter and cheese plus pickle sammys). No daily weight today, oops. Some stomach distention likely due to fluid overload, increased intake of food, effects of steroids, constipation (poor girl). Saw her pee 500cc twice today – that is 1/2 a liter, I was very impressed. Mood….moody. Sometimes sweet. Sometimes sour. Sometimes….Dragon in all aspects of the creature. On our way to her LP today, I carried her over the walk way  from one building to the next. I pointed out the Family House where we are staying and said “that is where mommy, Grandma, and Linco sleep”. She asked if he was there and I confirmed. Then she asked “is he looking at me?” as she waved. Ugh I can’t wait till they are back together. Love is Life. Soon we’ll be home.

Induction Day 8 Procedure

Feb 23, 2016 (Scott)

In recovery. All went well.

Today was day 8 of induction therapy. Intrathecal (into the spinal canal) dose of methotrexate and intravenous dose of vincristine. The lumbar puncture requires general anesthetic. The twenty five minutes between Maya falling asleep and waking up in recovery are a slow, quiet panic–a grinding exploration of fear, reassurance, worry, and faith.

She opened her eyes to see her mommy looking back at her… and from under the clear plastic oxygen mask I saw a sweet smile emerge. All is well — now on to the next challenge.

NPO at midnight

Feb 23, 2016 (Sara)

Maya has Day 8 tomorrow. There are and will be some very specific day’s during this intensive treament. Days that have LP’s (lumbar punctures) and chemo infusions like tomorrow. Tomorrow is round two of “intrathecal” (in the spincal fluid) chemo and vincristine chemo through the buddah button. She will also get her port (mediport/central access/buddah button) dressing and access changed but we are OH SO thankful that this first one is while she is under. The doctor mentioned during rounds this morning that there were “a handful” of new diagnoses over the weekend and that sometimes they will make the current kids “add ons”. This is what Maya was last week when she was actually one of those “new diagnoses”. I made it very clear I would be nagging them to set a time and who do I nag? I hate to think that another child would have to fast for 20 hours like my child did last week…but they would be crazy to think moma bear would just sit back and watch my child have to do that again. She is now scheduled for 10 am. Boom.

Today was a good day. I’m sure we will all be up and down and everything in between but as a whole, today was good. She has been taken off precautions. Now this is very different than the precautions WE will be taking when at home and her ANC is way low. She has been in an isolation room with out being able to leave because she came in with a cough. The poor child didn’t believe me (until today) that there were other children here. I asked (several times…I’m getting good at nagging) if Maya could visit the play room today since she is only on “neutropenic” precautions and not “droplet”. One of my favorite nurses helped make it happen. It wasn’t the perfect scenario. It was a bit late in the day, we had to get escorted by Child Life (and I like the lady a lot its just hard to go on some one else’s time), she needed to pee, she needed to poop, she was a little tripped out by the two kids with no hair, and baby Lincoln wasn’t there. We ultimately only spent a total 10 minutes in the room but she enjoyed looking out the window at the massive construction site and driving in the little pink and purple Flintstones style pushy car (no idea what that thing is called). She wanted to play with the girl’s baby but I’m sure you can all imagine that sharing personal toys is a bit frowned upon. Needless to say Mommy had to run and find her own baby…that she did not want. I’m happy to know the three year old still exists within the dragon.

We didn’t return to the playroom today but she ambulated around the unit and we hope the playroom can happen tomorrow. The Family House that we are staying at has a wonderful playroom for Lincoln and I’m afraid that she thought we might be going to that one. I told her she wouldn’t see him but I think she might have wishfully thought there would be a surprise for her. Broke my heart.

After dinner tonight, we did our wipe down bath and snuggled on the window sill. I’m not sure I mentioned this before but it quickly became one of my favorite times of day.
Tonight especially. I saw the booty dance for the first time in what seems like forever. I’d post the video but I think we’d get in trouble…I mean it was during bath time. It made my day.

Today’s numbers and motherly assessment: Hemoglobin 10.1 (woooo!), Platelets 110 (hoping she holds on to those since they need to be >50 for the procedure tomorrow), WBC 0.6 (omg), ANC @ ?? below 15 (freaky low). Her blood pressure is normalized and she’s on approximately 6 meds. Appetite…incredible, like really incredible. Kicked right in. Weight has crept back down closer to admit weight (she had gained 4 kilos….that is over 8lbs…from water). Overall she is sick but amazing. The Dragon is efficiently burning down the castle to make way for the new. Scaffolding has yet to be set but the plans are brewing. Love is life.


Feb 22, 2016 (Scott)

We’ve hit a good stride heading toward tomorrow’s procedure… thankful to have extended moments to focus on being thankful.

In no particular order I’m grateful for…
Family, friends, community and all the benevolent forces of the universe. Good medicine, good food, warrior spirit, coffee, sunshine, lemon ice, pickles, Frozen…
Children’s Hospital Oakland, caring nurses, stuffed animals, hepa filters, Dora, blood transfusions, nerds, and the bacteria from which chemo drugs are synthesized.

I’m most grateful for strength… strength for Maya and every other child to be unafraid when facing challenges large or small, and the strength for those who care to provide unwavering support and reassurance through it all.

Thank you.