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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.

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)

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.

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.

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.

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.

Feb 23, 2016 (Sara)

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.

Feb 21, 2016 (Sara)

Noodles, egg, sammy, pickles, soy milk. I’m so happy to see an appetite today! Platelets were down to 9 this morning so she had platelets for breakfast. Hemoglobin is down to 7.1 so she’s gonna get some new digs flowing through her veins soon. White blood cells are bottoming out…now down to 0.5 and her ANC (absolute neutrophil count) is at 15. This means she has no ability to fight infection right now. Hopefully it will get higher soon. This number (the ANC) is what will guide our precautions. It tells us how fragile she is and when to take extreme precaution. Extreme precautions will be taken when her ANC is <500. When her ANC is 500-1000 we’ll still have to be very careful. We hope for many days >1000 and maybe she’ll even get to go to dance class. It might not be for a while but we’ll keep hoping. Till then we hunker down, eat and stoke the dragon’s fire.