Month: March 2016

Mar 31, 2016 12:30am (Scott)

Consolidation is a little like the ‘eye’ of the storm. We’re into the second week having completed two lumbar punctures with intrathecal chemo therapy and daily doses of 6-MP. None of the current therapies seem to be causing unbearable side effects, though Maya’s hair loss has accelerated–mine probably has too.

Today’s visit to the clinic was as smooth as we could hope. We arrived at 830am and were leaving just after noon. Maya walked from the clinic to the elevator, down a flight of stairs, and through the gardens in the middle of the medical campus. Her energy has started to flow at a more normal rate, and her desire to play, explore, and create is quickly overtaking her sense of being sick.

We met with Dr. Rafael today who was covering for Dr. Salo. We were all chatting when Maya’s morning labs came back: WBC total 7.3, hemeglobin 10.1, platelets 495, and ANC 5000. . . five thousand? Dr. Rafael looked up and quickly assessed the dumbfounded looks on our faces. . . “This is what we want,” he said. “These numbers are normal. What you’re used to is not normal. This is exactly what we want to see.”

Works for me. Five thousand, you say? How about Disneyland?!

We didn’t actually head to Disneyland, but we did do the next best thing around lunchtime in Reno… we ate at Taco John’s. We ordered food, sat in a booth, ate potato ole’s and nacho cheese and laughed and played. We also began to plot other ways to take this good time to widen out Maya’s world–within reason of course. We might even take her to see her first movie in a real theater.

Today we met another northern Nevada family on our same path. Their little boy is one month older than Maya and was diagnosed with B-cell ALL at Oakland Children’s Hospital six days after Maya was. We were there at the same time–probably passed each other in the hallway a number of times suffering the same blinding, oblivious haze. They are one week behind in treatment, standard risk, and plodding along with many of the same questions and concerns we have. It’s nice to be able to offer support, even to ‘talk shop’ about the day to day struggles, worries, fears.

The path of treatment is highly programmed, and the pacing is very specific, but the nuances of the ride down this long highway can make a world of difference. It’s shocking to me that my little girl can gain a third of her own weight in a couple weeks and eat like a bear coming out of hibernation while another little guy her same age can handle 28 days of steroid therapy without gaining weight and never suffering much change in appetite or appearance. I’m coming to learn, though, that the smoothness of the ride is not dependent any specific side effect or bit of forward progress or momentary breakdown. This is all about working through fear–so you can understand what the medical staff is saying, so you can communicate back in the way you intend to, so you can hear your child talk about her own fear and you can think clearly about helping her to work through it. And if that fails–and at some point it likely will–it’s about having the strength to hold the arms and legs of a panicked, terrified, screaming three year old for a blood-draw or port access… two or three or four times in a day.

I’ve said all along that Maya’s strength makes me strong enough to handle this. And I know we’ve raised her to be strong and to be conscious of what she does and why. This has led to her ability to hit these challenges head-on. But her ability to overcome fear is unbelievable. And I am eternally thankful for every bit of life and love she’s experienced in her 3+ years that have allowed her to be the unstoppable force rolling us reliably down the road.

Thank you to our family who’ve helped shape Maya’s trust and image of love. Thank you to her friends Sally, Marina, Andrea, Erica, Chelsea, Angelese, Swayzee, and everyone at the WNC Child Development Center who have expanded her world and provided a nurturing platform on which to grow. Thank you to all our friends who are really more like family–Maya’s extended aunts, uncles, and cousins who she brings up often in conversation and who color her world with personality. And thank you to our community–you have lifted us up so that we’ve never felt the unbearable isolation of going through something like this alone.

Tonight our prayers focus on strength and love for the Correlli Family of Carson City. You are held in very high regard in this community; your loss is ours too.
https://www.gofundme.com/mzwrh6ec

Mar 28, 2016 11:01pm (Sara)

Maya has continued her return to her feisty self. And as much as it has reminded us that she is naturally a stinker (actually another “s” word comes to mind), the challenge has been awesome. I love that I get to do a little more discipline than tip toeing these days. We have to be careful in that sometimes her behavior can be because she isn’t feeling well but lately, we can mostly count on her case of the “being three”. Re-setting some boundaries has been necessary. I really do wish she looked more herself though. I find myself looking at pictures of the past just trying to “see” her again. I know she’s in there but…sometimes seeing makes it easier to believe.

She has been tolerating her 6-MP pretty well and hasn’t really complained of nausea. She has had a couple of headaches and the last few nights her temp has been a little higher than we like. If her temp (under the arm) is 100 dF, we have to call the clinic. If it is 100.4…we are probably heading into the hospital. So far she hasn’t gotten over 99.9. But dang.

We enjoyed a wonderful Easter with both my parents and Scott’s. Homemade fresh pasta and sauce. Maya was the sous chef and such a busy bee. We also found her tap shoes again. Oh boy. We might have to trade em in! She is growing so fast.

Scott and I are holding up. To be honest, I’m not sure how to answer the very simple “how are you?”. Good? I think I’m good. I feel okay. Sleep has never really been “a thing” in our house since Maya was born so sleep deprivation isn’t all that foreign and shouldn’t alter my well being now right? Stress is usually more under control though. I miss dancing. So badly I miss it. Even just once a week. I stretch my body when I find quiet moments but I miss loud music and strong movement. My soul aches for it. I look forward to teaching ballet again and maybe even taking class. I’m just so hesitant on going to the studio in fear of bringing home a bug. It breaks my heart. I really feel like I need it. Apparently our dance parties to Let it Go has not satisfied my need.

My two best friends came today. It was great. I think it surprised me that instead of sitting in the playroom with them, chatting, and catching up…I went to take a shower. It is definitely not typical of me. I don’t know if it is any indication of how long it has been since I last showered, or if my pony tail has been way too tight but I pulled out so much hair! My shower tile wall looked like it did when I was 5 months postpartum! I thought the whole “hair falling out and stress” was a wives tail. Oh boy. Something might need to change. I guess more showers? …okay maybe stress relief too.

I know this is a marathon. I know the time line. I know the outline of what is to come. I know all sorts of things. I know it’s a long distance race. My problem is…I’m not a runner. I’m a dancer. This means a lot of things but one is that my usual way or coping with stress and recovery needs to adapt. As a dancer, my life has been: go go go, slow, melt, hold, jump, higher higher higher !, go faster, stop. Breathe. Repeat. This goes for growing up competing or even recitals (quick changes and multiple numbers) to working as a professional dancer (booking gig after gig and then going 2 months with nothing). I’m used to going full out 150% for a 5 minute piece. I will give everything I have while surfing the music and leaving my soul on the floor. Then I take a breath. I relax. I recover. I think about what’s next.

Now, this dancer needs to learn to run. And find a pace. Anyone who truly knows me knows… an even pace is not natural. It’s uncomfortable for me.

But I need to. For my well being. And I will.

If only I was a dragon. If I were a dragon, I could fly. I could find a beautiful pace. Up and down, up and down. As a dragon, I would feel comfortable in an even pace. I would need it. If only I were a dragon. Like Maya.

She’s good. She’s doing so good. She is such a strong, paced, dragon. And I know I will learn so much from her.

Love is Life.

Mar 24, 2016 12:42am (Sara)

While today was a heavy one, it was also a great one. There were ups and downs but it was filled with even more laughs and milestones. Maya continues to get stronger by the minute. She walked more today than she has in probably a month. After her procedure, she walked down the entire stair case by the piano in Renown (seems like a lot…maybe 40??). She also played around outside of the hospital in the herb garden/labyrinth area. Then she climbed three flights of stairs in the parking garage. She was unstoppable. And she even cracked some jokes. It was amazing.

The day started out with a dance party…as Elsa of course…which was fine until we had to leave for Reno. We had to come to a serious compromise since Elsa’s dress is really not that accommodating for access to her port nor her back. It was a challenge but we were only 7 minutes late so…count it.

The clinic was actually quite busy today – Wednesday’s are “procedure days”. They schedule the pediatric ICU doctor to come put the kids out with propofol (an IV med rather than the typical gas sedation). We actually met a little girl who is just about done with treatment. She is in the high risk group so our paths look somewhat different but it was nice to meet another family.

Maya’s ANC has dropped to 740 and they almost didn’t do her procedure since there are blood count parameters that she needs to meet in order to progress through the phases of treatment. That call it “making labs”. If Maya was in the high risk group she would have continued on in the clinical trial and this would mean there was no wiggle room for the numbers. Since she is in the standard risk group, the doctor has more autonomy and can determine the ability to move forward with her clinical judgment. The treatment for ALL with standard risk is very planned out and rigid in most ways but we are not bound as strictly to some parameters and protocols. So we moved forward and here we are…in “consolidation”.

Maya had a lumbar puncture with intrathecal methotrexate infusion as well as a dose of vincristine. This will be the same next Wednesday. And the Wednesday after that.

After Maya’s procedure, we met with the Northern Nevada Children’s Cancer Foundation. They were all wonderful people and I even ran into a girl I taught ski school with many years ago. It was very neat and everyone is so kind and loving.

Maya started a new chemo tonight. It’s called 6MP and its a liquid we give her orally. It’s pretty stressful since its one of those drugs that can’t be taken with dairy or citrus and on an empty stomach…I wish I knew when my snacking-whenever-preschooler’s belly is empty! I contacted Heather – Alicia the Unicorn’s mom – to see if she had any insight for me. Alicia is about 8 days ahead of Maya so I feel lucky to have someone jumping in first – as awful as that sounds. We took her advice and gave Maya her first dose 2 hours after dinner with a little Apple sauce. It can cause nausea so we hope she just sleeps through it. 6MP has to be given 2 hours after a meal so we are going to have to be pretty good at dinner times…and I suppose no more nightly cup of warm milk…ugh. How even the small changes can feel so big in times like these.

She’s on this for 29 days this round so I’m sure we’ll get the hang of it…We have to get the hang of it since the restrictions are for efficacy and each dose is so important. I already cried about it in fear that we didn’t do it right. I’m sure I’ll be on the phone with the doctor tomorrow.

The father of the girl we met today told me “it does get better”. I hadn’t even said anything yet. Maybe I didn’t have to say anything…maybe he just knew the look on my face.

I discussed with Heather tonight how I try to stay strong but sometimes I just don’t know how long I can last. Then I just look at my baby girl and I somehow know I can. She agreed with me and mentioned that she sometimes feels self pity for all the things she is missing out on. It’s hard not to have a pity party…and sometimes I feel like I deserve one. But I can’t really let myself get there. I would just feel guilty…and I really can’t let myself have any more mommy guilt. I know we all have to change. My little family will likely never be the same. But, as I told Heather today, we can’t let go of who we are. I have to keep the true me in some way…it’s just going to take some self reflection and time to figure how to do that in this Brave New World.

Motherly assessment: WBC 2.1, Hgb 10.3, platelets 300, ANC 740. Maya has only lost 2 pounds but her belly is probably 30% of what it was. Her moon face is still full but that doesn’t inhibit her. She is fierce and still strong. Even with two types of chemo today, The Dragon is more than ready for this battle.

Mar 22, 2016 11:19pm (Sara)

I discussed with a friend today how sometimes we hold on tight to our emotions and let them be our own burden to bare. We often do not want to “worry” others or might feel like a martyr if we were to complain too much. Then there is this other phenomena of holding our words when things are actually going really well. It’s like the bad sometimes has a louder voice. I want to apologize for instigating so many tears. It is has never been my goal to write a heart wrenching entry….but thank you for your support and for listening. Being able to write some of this journey down and know that it falls on loving and empathetic ears truly does relieve some of the burden. I also want to apologize for not updating when Maya has been so great. I have not being able to put into words the joy we have experienced over the last few days.

Maya has been off steroids and chemo for a week today. This break has been more than welcome and we have been able to enjoy not only wonderful belly laughs and jokes, but stair climbing and dance parties. These dance parties might not be just like they once were but they most certainly have been more refreshing than anything. Even more refreshing than the first deep breath after stepping off the plane at the Lihue airport. In fact she makes plans to go “back to Kauai” most days.

It’s amazing how these last few nights have been filled with her amazing energy and she has even stayed up till 10 or 11. While we have watched The Good Dinosaur multiple times, her days have also been full of pretend play and cooking. A few more visitors have ventured into our home and she has been very happy for the interaction. Today she woke Grandma Bella up for a dance party and she just finished her day with the same. Her belly has come down a wee bit…enough to wear her awesome Elsa costume for as long as possible. These days feel almost like a normal life with my previously amazingly healthy three year old.

She still looks very swollen. I understand it will take several weeks to look “normal” again. But in general she is good. We are all good. Scott and I have discussed how we have heard many comments on “you’re handling this so well”. Our answer is and has to be….it can be much worse. It can be so much worse. We will have more awful days. We are anticipating some pretty awful weeks this summer during the phase called “delayed intensification”…also known as the “red devil”. But even with those looming days, we have hope. We have this incredible girl. She might look different but her mind, heart, and soul are still the same Maya we know and love. Some families have to watch their child not only change physically but mentally. Some children have been known to lose ten IQ points. Some families have to watch their child change permanently. And as we all know, some families don’t get to have their child at the end of it. With all of this, it is impossible for Scott and I to be negative.

Tomorrow starts Consolidation. This is 4 weeks. Maya needs to be NPO (nothing by mouth) starting at 3am. We check in at Renown at 9, her Buddha button will be accessed, we’ll wait for lab results, then the ICU docs will come put her under for her lumbar puncture (LP) with methotrexate infusion. She will also get a dose of vincristine (IV chemo) and we begin her once a day oral chemo called 6-mp. She will get three weekly LPs. We also meet with the Norther Nevada Children’s Cancer Foundation tomorrow – pending Maya’s condition. We have spoken with them on the phone a few times and I’m not sure what we might receive from them but it will be nice to meet them.

It has been wonderful running into people…some of my people…in the community and hearing how much Maya is thought of. My heart couldn’t be more full. To clarify some thing – with this type of cancer, remission is wonderful but not the end. It means they cannot detect any leukemia in Maya’s blood but after 5 decades of research, they know it would comeback if not treated with this standard of care. Maya is considered “standard risk” which means her risk of the leukemia returning is “standard” or average (it would be better if she was “low risk” but we are just happy she is not “high risk”). It also means she will get most of her treatment here in Reno and the Red Devil phase only 2 months. If she were high risk she’d need most treatment in Oakland and Red Devil would be the majority of her treatment.

We are so grateful for Maya’s prognosis and treatment plan.

Today the dragon is flying. She is soaring over her rebuilt castle feeling strong, fierce, and ready. The castle will be attacked. The dragon will be attacked. This we know. But she is covered in armor and protected with more Love than ever before. Soar dragon. Tonight you fly. Tomorrow starts a new battle.

Love is Life.

Mar 22, 2016 11:12pm (Scott)

Tomorrow will begin the second phase of treatment called ‘consolidation.’ This will be a relatively light schedule of treatments over four weeks — no steroids, but weekly lumbar punctures with intrathecal chemo and infusions will be reminders of the seriousness of Maya’s battle. This is a monster that can come back rapidly in a variety of forms; we must be the aggressors and given the chance we’ll stomp on the throat of this awful affliction.

A week off of treatment has been a very welcome respite. Maya has enjoyed dance parties day and night. The soundtrack is ‘Let it Go’…. over and over and over. But it makes her feel strong so what can you do?

Maya and Lincoln are bonding quickly and having a great time with renewed energy. Linco follows her like a toddling shadow and tries to emulate everything his big sister does. Thank goodness for siblings.

We’ve had some nice opportunities to briefly expand our world while Maya’s counts have been up, though we take no chances. Thank you to all for your continued support, beautiful gifts, cards, thoughts, and prayers. You’ve helped us get through the threshold as strong as we could hope to be; soon it’s back to the warpath: consolidation, interim maintenance, delayed intensification, and whatever may come after with confidence and faith that together we will persevere.

Thank you.

Mar 19, 2016 (Sara)

Standard risk…those words are truly the best words we could ask for in this situation. The doctor gave us a small heart attack when she said “well the good news is that we found no leukemia in Maya’s bone marrow”….we went the entire next two hours of conversation waiting for the “…but the bad news is…”. Eventually, we realized that the bad news is the next 2.5 years of treatment. The road remains long and rocky but tonight…we pop open some bubble. Proseco and Mums Cuvée, cheers.

Much research has proven that if we stop the fight now…we surrender and Maya could ultimately lose the battle. So we continue our fight. This is far from over but at least we know we have the best chance to win….as long as we fight on. The next 2.5 years is full of many things. Today we discussed the phases. I believe everyone’s lives are full of phases…ours are now just a bit more stringent than the typical family’s I suppose. We are closing the induction phase and oh-so grateful to be moving on.

Over the last 5 weeks, we have found that doctors (or maybe more specifically scientists) don’t like to “give too much” information to the lay person. I do believe this is not because they are hiding anything but feel it may be “too much” for some families. They probably don’t want to over burden anyone. I appreciate their sensitivity but Scott and I both agree that the more information, the better we can prepare. We also understand that they probably want us to remain flexible. What the doctors don’t realize is that the more information we have, the better we are able to be lucid. The unknown is what paralyzes us.

Our Reno doctor, Dr. Salo, was kind and thorough today. She talked with us for a long time and even on this Friday afternoon, answered our many questions. We discussed the next 2.5 years and she verbally gave us an outline of what to expect. She mentioned that she likes to give “an outline” at first then discuss each phase’s road map in more detail as they come.

I can’t tell you if it is the clinician in me or the mommy in me that wasn’t satiated with the outline. I have requested road maps for each phase and while Dr. Salo agreed, she asked me to promise note to “go crazy” with all the information. I promised her I wouldn’t. We need this because Scott and I are planners. We haven’t always been, but at this point in our lives…planning makes us more comfortable. Maybe even more brave. That being said, we are also flexible beings. I understand that the road maps will only be flow sheets. They will be the pathway…not necessarily the exact journey. But at least we can see beyond the castle walls. Maya has shown great bravery especially when she is prepared (for a pokey butterfly or just a visit with a doctor)…perhaps this is nature. Or perhaps this is nurture since her parents also need to be prepared to exude their strength.

I will explain the treatment plan for ALL in another entry….perhaps with less bubbles floating in my brain and heart. For now, I will explain the next phase – consolidation. This phase is focused on making sure the leukemia cells do not come back in the central nervous system. As mentioned before…her initial spinal tap was negative. This is good but it only looks at a small amount of spinal fluid – I think 5mls (a teaspoon). Leukemia has been studied for over 5 decades…in that time they have found, if the patient is not treated prophylactically…they will likely relapse with leukemia in their brain. So. We burn that bridge and make sure that won’t happen. Aside from the last year of treatment, this is probably the “easiest” phase. The doctor called it “wussie-chemo”. Im not gonna lie, I’m ready for a break.

The Consolidation phase starts Wednesday. This phase lasts for 4 weeks and includes one infusion of vincristine via Buddha button on day one, daily oral chemo, and 3 weekly spinal tap/lumbar punctures with methotrexate (more chemotherapy) infused intrathecally every Wednesday. Suppose I’ll have to chance my work schedule…

Wussie-chemo right? Ugh.

While the news is good…this ride got real today. Thank you for all the love and support. Truly. Of we did not have all of you, our boat would capsize…I think I would drown with out you all. Thank you from the bottom of my heart. Love is life.

Mar 18, 2016 (Scott)

… is very good. Leukemia was undetectable in Maya’s bone marrow (less than .01%). She will
stay at standard risk as we had hoped.
More to come. 🙂

Mar 17, 2016 (Sara)

There is a very warm and palpable spark smoldering within Maya and it is no longer deep down. This spark is about to burst and the start of something more than just a flame…it will be an eminent blaze. One that is already fierce and legendary. Her fire has grown exponentially with every hour today. Maybe her strength came from the loving, enriching, and investing visits with Grandma Sandy over the last couple of days. Maybe it came from the exciting arrival of Grandma Bella today. Maybe it came from St. Patrick’s Day. Maybe her fire started to billow because today is day two without the full force effect of decadron. Maybe it is a combination of many things. What ever it may be…I’m so grateful.

I have heard more giggles today than I have all month. She has spoken more words today than I have heard in weeks. She spend more time outside today than she has since we have been home. She painted 4 pictures. She helped to complete a cool kid sewing project with Grandma. She played in the play room. She read books. She played with Lincoln. She laughed…oh she laughed, and my heart sang. She told Grandma what happens to a caterpillar in the most detailed way I’ve heard her say it (yes…she used the word metamorphosis). She wanted to wear a dress. She wanted fruit. She let me do more than braid her hair….she actually requested snuggles from ME. I probably held her tighter than I have in a year. In fact, as I write tonight…I am sitting on the end of her bed while she falls asleep to her Hawaiian music. A position that Scott is usually asked to keep. I have certainly witnessed a change in her. It hasn’t been drastic but it is more than welcomed. As selfish as it sounds…this change in Maya has been essential for my well being and for the soul of this mommy.

Physically she hasn’t changed as much. We have been told it will take a while for the swelling to decrease but she has gotten stronger. She walked up two stairs today while holding Grandma’s hand. Then she walked down them a couple of times too – she hasn’t walked up or down stairs in a couple weeks. I also saw her walk up one step out back with out any help or encouragement. She looked back at Grandma Bella and I with a crazy face when we cheered. She looked as though “why are you cheering you crazy ladies”. I think she has no concept of her weakness…perhaps it is only us adults who even fathom the weakness. Sometimes she makes this all look easy. She makes it look like all this is just an exercise in getting stronger. Honing her strength…stoking her fire.

Tomorrow we find out how her body…more specifically the leukemia in her body…has reacted to the chemo and steroid therapy. On Day 8, while we were still in Oakland, they took a sample of her blood for part of the clinical trial. They have taken several but this one is specific to the genetics of the leukemia. Not necessarily her genetics of our family, but of how the leukemic cells can mutate or change. A couple of weeks ago, Dr. Salo (the Reno doctor) discussed with us the results. Preferred results will show markers on the cells that indicate a direct sensitivity to the treatment – it would mean that there would be great anticipation that the chemo worked as it should. Other results can show markers that indicate the leukemia is more resistant – it would mean the strong possibility that the treatment would not work as well and that other treatment plans will need to be considered. Maya’s cells…well they were inconclusive. This means that they don’t know. Could go either way or a combination of any of the above…or something totally different. It just means that we cross our fingers, pray, meditate, surround in healing and strong light, and hope…that tomorrow we hear less than 0.01%. That would mean her cells were sensitive enough to the treatment that less than 0.01% are leukemia. It would mean we move on to the “consolidation” phase and that she’d stay in some version of “standard risk”. It would mean remission.

Her labs looked great on Tuesday. Happy would be the obvious feeling…but as Scott mentioned, we are cautious with our optimism. I truly am a naturally optimistic person but lately that optimism has been impeded by fear. I try to keep that natural Sara in the driver’s seat but sometimes she is tired and weary. There are many “big days”…but tomorrow is most certainly one of them. Not because of procedures, or pokes, or infusions, transfusions, travels, emergencies, or even more procedures. It is big because of what may be. Tomorrow will tell us what Maya will have to endure. Tomorrow will unveil Maya the Dragon’s enemy. She has been away at war but now the battle comes home. Breathe dragon breathe for no matter what, we will celebrate your triumphant fire. And we will win.

Love is Life.

Mar 16, 2016 (Scott)

I often forget to thank those closest to me–those whose support has no substitute (I can’t see the forest for the trees I guess). I couldn’t do any of this without my Muse, my Love, my Wife Sara. We’ve worked through this as a team–as we always do–sharing the burdens, the tasks, the responsibilities, the stress, and the joy. Sara is my one; I adore her. She makes me laugh, she challenges me, she comforts me, and I trust in her intuition. I know she and I could survive this under different circumstances, under more difficult circumstances; she makes me stronger, as strong as I need to be, and together we have no limits. That said, I’m grateful for the circumstances we have–for the support we have and for the path laid out before us. There are unknown numbers of ingredients that are critical to our success in this fight–family, community, faith, hope, strength, patience, dragon’s fire, chips and salsa and sourdough bread. For me, the critical ingredient is My Love…. I adore you, Sara Moore. You are absolutely amazing, beautiful, and one of a kind.

There is much to celebrate today. Our trip to Oakland and back was on schedule; we arrived home this evening at about 10pm. Maya’s procedure went as planned with no surprises–lumbar puncture, intrathecal chemo, and bone marrow aspiration. Maya took her last dose of Decadron this afternoon–mind, body, and temperament can begin to recover. Special thanks to the Family House at Oakland Children’s Hospital for making space for us Monday night; I don’t know what we’d do without them, and I’m so glad we haven’t had to worry about it.

The drive to Oakland was smooth. Traveling a long distance with two kids in car seats is rarely easy, but they both handled it well. Avoiding crowded public places like rest-stops and convenience stores makes pit-stops special opportunities for family bonding–the port-o-potty in the back of the SUV is a nice touch, and we had the opportunity to try out many more off-ramps than usual. The only complaint out of Maya was that she was hungry, and we’d packed plenty of snacks. Grandpa Pat handled feeding and entertainment duty in the back seat with exceptional results.

Speaking of hunger, Maya began pre-surgery fasting at midnight Tuesday morning. This started to become an issue about 9am when she saw a coffee bar in the hospital lobby with fruit and scones–“That smells good,” she said. “Ooooh, they have food.” By 11am the hunger became a bit more… shouty. There was commotion. People noticed.

All went well with the procedures. Recovery was standard, and food was first on her mind as she woke up. The recovery nurses were terrific and managed to get her a sack lunch from downstairs. She pretty much just ate food for the next two hours–it’s a little scary to see a kid eat three hard boiled eggs in a row… as an appetizer. We’re happy to be finished with the steroids.

As Maya was recovering, we got a look at her labs from the morning: platelets had increased to above 200, hemoglobin had decreased slightly to 8.6, but her white cell count had increased to 4.4 and her ANC had jumped dramatically to 2200. Sara and I talked the rest of the day about what this means, what’s expected, and whether or not we should be excited; at this point we’re cautiously very excited.

We should know the results of the MRD (minimal residual disease) test on Friday. This will be critical information to determine her risk group going forward.

It’s been a very long couple days with little sleep and a lot of driving, so I’ll wrap this up with some gratitude:

Thank you to Oakland Children’s Hospital for treating each child as the most special one and treating parents with illimitable care, respect, and patience.

Thank you grandparents for your strength, energy, and help.

Thank you to Maya for carrying the weight of this illness and this treatment with the ease of someone who know’s she has what it takes to win.

Thank you to Lincoln for rolling with all this turmoil like it’s just another day in paradise. He’s just barely turned one, and we’ve put the poor kid though weeks of chaos in Oakland, a new house, very little regularity in his day to day life, and twelve hours of driving in the past two days. It was tough to get him to sleep in another new location last night and with all the focus on Maya being ready for her procedures. He handled everything else with ease until we were about an hour outside of Reno tonight, and the poor little guy had just had enough of the car seat. He cried in that exhausted, choking way that just breaks your heart, but considering all the different ways this trip could have gone, this was not so bad. So, thank you, Linco, for being the strong little man we need to to be and for making your sister laugh when she needs a distraction.
Through all this, Lincoln has learned to walk, made every new place his home, and perfected a unique dialect of Ewok. . . I’m pretty sure it’s Ewok. . .  “Eee-woo uh choo tah,” sounds like Ewok anyway.

Thank you for reading and caring. Your support means more than you know.

Mar 14, 2016 (Sara)

It’s a strange feeling to pack for Oakland tonight. The last time we packed our future was so nebulous. On that crazy Friday afternoon…at 12:30pm Dr. Papez said we had to go. So we went. She said soon. We were heading north of Carson 40 minutes after she called.

We would have left sooner but it took me 10 minutes to breathe again. It took me 10 minutes to peel myself from my kitchen floor. 10 minutes for me to snap back into reality enough to call my husband…to remember that he was about to walk into a meeting. A meeting where he may or may not look to his phone for the next hour. 10 minutes felt like a life time…and Dr. Papez saved my life. At least it felt like it. She took those 10 minutes to be with me. She might not have been sitting In front of me or physically holding my hand. But she was with me. And she was holding me. I felt it. I can still feel it.

She had to tell me news that no doctor ever wants to tell a patient. No person ever wants to tell anyone ever. And really no mother ever fathoms to tell another mother…or even imagines how to tell them. But she had to. And she cried as she did. She cried with me. She hurt with me. Over the phone she held me. She listened to me cry. Sob. Moan. Lose my breath. Almost vomit. Lose my faith. Find my faith. Catch my breath again. She was there. As painful as it was for me to hear…she shared some burden in having to disseminate the information. One day I hope to hear her side of the story.

I think of Dr. Papez many times a day because I will be grateful for her for my lifetime. She got Maya to Oakland in plenty of time. Tonight I reminisce of that day since here we are packing again. Tonight it will take me way more than those 40 minutes to pack. I will over think things and imagine what we “might need” for the 36 to 48 hours we’ll be in Oakland. I will also likely have as many appropriate outfits as I did the first trip…of two weeks.

For the first trip, I had a bag packed. Oh I sure did! It was full of 5 work outfits. I think I had a more prepared bag for my kid getting cancer than I did when my water broke before she was born. My bag was full of perfect outfits…for work. Slacks. A dress. Chiffon shirts. No panties. No bras. No socks. Why? Well…we were moving. I had just started packing my closet the day before. So I thought it would be appropriate that I pack a bunch of work clothes…I mean we were gone move that weekend so I wasn’t gonna be far from my lounge clothes. I was so thankful my mom found a target so I had panties and Amy brought me some tank tops. Also…I was thankful that non-stressed Sara had packed a pair of yoga pants. I was the best dressed hot mess of a mommy shit show that hospital had ever seen. At least until I found the yoga pants…

Packing for this trip is different. It feels so much more…almost luxurious in comparison. We know where we are staying. The Family House personally called me tonight to ensure us they are saving a room for us- so kind and they didn’t have to do that. I owe it to my parents since they both built such wonderful rapport with the staff there last time. We know what procedures Maya will have. She will get a bone marrow aspiration and lumbar puncture with some chemo. We sort of know timing. We check in at 9 am Tuesday…gotta play the rest by ear. But more that all of that…we know we will be driving home with our baby girl. Not something we were certain of the first trip over the mountain.

On February 12th…we had strength but couldn’t feel it. We were supported but it was hard to know how to accept it since we were blinded with fear. On that day we embarked on a journey as foreign as Dante’s. But here we are. Tomorrow we will set sail but this time with a secure destination. We have hope, love, strength, and most importantly … We have fire. Maya’s fire.

3 more does of Decadron. Things will be different. She’ll continue to lose her hair. She’ll have other side effects. But she will be our Maya again. I hate to say…but sometimes I can’t even recognize her. She’s in there though. I can always…and will always see those fiery eyes she has blessed this Earth with.

Love is Life.