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Jul 29, 2016 1027pm

Despite a 6+ hour drive home on Thursday, I’m happy to say the Oakland trip went as smoothly as we could have hoped. Despite some traffic Wednesday morning, we made it to Oakland Children’s Hospital about 830am. The initial checkup was fine, Maya was as strong and calm as could be with no crying during her port access (3/4″ needle to the chest) for the 7th time in a row! Sara and I got all our questions answered to our satisfaction through the day, and all went very close to the schedule we had planned on.

Maya’s LP at 10am was uneventful, and she woke up calm and hungry. We shared a room with our new friend Bella and her family for one night and visited with some old friends around the 5th floor–Maya made quite an impact on a fairly long list of people there during her initial stay, and it was nice to catch up. Special thanks to Bella’s family for sharing space, and a special shout out to Stella and her mom, Jessica, who we met as we all explored on Wednesday–strong, calm, and patient, you’ll be in our thoughts and prayers for consistent improvement.

The OCH staff was gracious enough to get us checked out in the early afternoon. As we wrapped things up, Sara and I were given our final, practical exam on chemo infusion, IV flushing, and port deaccessing–Friday, Saturday, and next week we’ll be taking care of in-home chemo treatments and needle removal. Below you’ll see a picture of our first such undertaking–Maya’s face is priceless… exactly the look you should have on your face just before your parents give you a chemo infusion!

We’re so thankful to be blessed with a professional, caring medical team at OCH and the Reno Clinic. And we’re forever grateful for family, friends, and community who create the supportive environment that allows our little family to persevere.

Thank you.

Jul 28, 2016. 11:03am (Scott)

Maya slept well and woke ready to play. Her vitals and fluid output (if you know what I mean) have been more than sufficient to move forward on schedule. We’re about to draw the 18 hour blood sample to see if we’re ready to head home this afternoon. Maya has been a superstar as usual.

As she got out of bed this morning, she noticed the chair/bed/torture device I slept on. I asked if she thought it was a big enough bed for daddy. She replied, “I don’t think that’s big enough for anyone!”

I’m so thankful to have such a short, trivial list of complaints.

Jul 27, 10:22pm (Sara)

There is a book called “The Rabbit Who Wants To Fall Asleep”. My mom purchased it for us in hopes of helping our dragon child fall asleep more easily; anyone who is in my every day (or almost every day) life knows we have been struggling with sleep and tantrums at night (not night terrors or nightmares…tantrums and defiance…she can be so mean!). Really any one who has been in my life for the last 37 months knows my children don’t sleep so I’m not sure why I’m surprised. Chemo or no chemo my children hate to sleep. Well then, moving on. Scott has been reading this book to Maya for a few nights in a row now and while one would think it puts kids to sleep because it’s a pretty boring story the ingenious part is that it is a mild form of hypnosis. Well at least we think it’s mild. I wasn’t sold on it until very very recently.

The book offers a quite wonderful suggestion of sleep through guiding the reader to change inflection of voice, use body language, and even repetitive phrases. Scott has actually gone rogue by putting in some of his own power of suggestion. “When you wake in the middle of the night, you’ll feel safe and loved and go back to sleep easily”. And my favorite, “if you see mommy in the middle of the night, you’ll be nice to her”….and not scream in her face. We were pretty excited that maybe it will help Maya fall asleep, especially while here in Oakland. Scott has thought about adding “when the nurse comes into the room you’ll be nice and let her take your vitals while still sleeping”. You know – help us all out. One problem: it clearly states to read to the child (or crappy sleeper) with “no distractions” around. Well a shared room in a hospital is far from “no distractions”. We like our roommate and her family. We even like all the staff but we are happy this is just a one night break in the routine.

The amount of energy Maya had just prior to Scott’s reading of the book was unbelievable. The exhausting day filled with 4 chemo drugs (IV, intrathecal, and oral) plus propofol (anesthesia), midnight travel, and delayed meals was most certainly not evidenced by her enthusiasm, imagination, and excitement. I witnessed a “long neck” crawling all over her bed…yes a long neck dinosaur from the Land Before Time. Did you know there are 14 full length movies from that series? 14, and at least one is a musical. I miss Frozen. After dinner we walked circles in the halls with our new friend Stella and Jessica (Yes! Even more new friends – ones that live 15 minutes away from us). She walked some and she rode her noodle pole some. She chatted with nurses and exhibited such vitality. I had to question if the earlier chemo infusions and lumbar puncture were just some weird dream I had. For the most part, she was such a sweet girl and even better patient.

We got to ask a lot of questions today. We asked many questions to three different doctors actually. I wish I didn’t have to say they all had some version of answers but…well we feel pretty confident with how things are going and what to expect in the coming weeks. I still heard the word “shouldn’t” too many times but the more I hear it when I ask if the delay will affect Maya’s over all prognosis, the better I take it. It sounds like the delay is best since her labs were so low. The doctors explained that there is a higher chance of infection and even longer delay later in treatment if we were to just keep going while labs are low. They all had some version of “she is likely just more sensitive to the chemo”. So I’ll take it and stop wondering. I’ll move on and worry about something else.

Maya exemplified Strong and Calm today. Today was the seventh consecutive boodah-button (port) access with no tears. Not even a whimper as a stranger placed a 3/4 inch needle in her chest. And no music was needed. As Maya laid down on the table for her lumbar puncture, she even chose which side to lay on. She once asked me “Mommy, why does the doctor sneak up on me when I’m sleeping on the bouncy bed and put a sticker on my back?”. We explain why and what is actually going on but she still questions it, of course. “Why do they have to do it while I’m sleeping?” She states it as if she’d just let them stab her in her spine while awake. With the bravery this child has, I almost believe she would. She trusts who we trust. She is comfortable when we are comfortable. We have to be sure to stay strong and calm. We also have to make sure we trust this process and the players. And we certainly do even when we have questions.

I witnessed Hannah (our day nurse) infuse the ARA-C today. This is the chemo that will be delivered to our home tomorrow night and we will be infusing at home. Tomorrow we get to experience “de-accessing” Maya. I’m sure this is hard to imagine for those of you who haven’t seen Maya’s port while accessed, but de-access is pulling the needle out of her chest and removing the darned giant sticker than is stuck to her sensitive skin. We are SO grateful to have found Brava Adhesive Remover spray. I would buy stock in this stuff if I could.

Today was the most intense day of chemo infusion and started part two of DI. Tomorrow she’ll get more ARA-C and then we will infuse the ARA-C on Friday and Saturday. She will get three days off then another 4 days in a row of infusion. During the next two weeks she will also be taking oral chemo every day. The effects of this month’s chemo peak at 1-3 weeks. We’ll have to be careful for a while.

All of this and she still made jokes. She still gave bracelets away. She still smiled and she still made people fall in love with her. Her bald head is a magnet for Love. Who knew?? People in the Starbucks this morning (very early this morning) smiled and I even saw one chuckle because with her shiny head comes shiny eyes. And they brighten even the darkest days. Strangers might not know it is her dragon breath, but we do. We see it and feel it. Maya the Dragon’s strength is tangible and I’m in awe of it daily.

All this being said…I had little hope that Roger the Rabbit, Uncle Yawn, Sleepy Snail, and Heavy-Eyed Owl would do much good in helping the dragon to calm down and close her eyes. I was wrong. Even with the little girl next to us moaning with pain from her wound, television on, and nurses forgetting that its 9pm and children sleep at that point….she was out before the book ended. Thank you Grandma Bella for a brilliant book. I stayed with Maya and Scott until we were confident she was out. I made Scotty’s “night shift” chair bed, got him water, let him go pee and then left. I walked across to the Family House to fall asleep. I miss my family but I know they are safe. I know they are happy and I know we are doing some good work. It is fascinating to see Maya thrive while under pressure. We will catch her when she needs a break.

Thank you from the depths of our hearts for all the love and support. The prayers and the light. The kind words and the quiet wishes. We wouldn’t be as strong or calm without you all.

Love is life.

Jul 27, 2016 5:34am (Scott)

It’s about 330am, and we’re loading up for the trip to Oakland.

Maya’s numbers were thankfully very strong on Monday (WBC @ 3.1, HGB @ 9.8, PTL @ 285, ANC 1240), so we will boldly head back to the bay for the second half of DI.

The uncertainty of the past few weeks was tough – nothing like what we faced in February or March, but enough to get heart rates up. This new forward momentum is encouraging though, and we’re energized (even at the wee hours).

We’ll try to keep everyone updated more often during our (hopefully) short stay in Oakland. We plan to return home Thursday evening. Special thanks to the Bapas, Aunties, and Uncles for watching Lincoln and the house.

Thank you everyone for the support, care, and love.

Jul 22, 2016 3:15pm (Sara)

Well…this has definitely become “delayed” intensification. I got a call (while at work of course…thank you for the hug Jessica), and it turns out that Oakland is “booked” till Wednesday. So we have an appointment Wednesday checking in at 8:45am for a 10:10am lumbar puncture. Then the chemo infusions. Then the overnight stay to monitor organ function and urine output (hoping for just one night). Then home.

Wednesday will be 12 days after she was supposed to start part two. 12 days. 1.7 weeks. Doesn’t seem like that long but it is feeling like forever. Why can’t 12 day vacations feel this long? When I was on the phone with the nurse, I didn’t cry. I held it together for the 5 minutes it took for her to tell me the plan – or that there is a plan in the works. I some how kept from expressing my frustration (more likely fear) with the feeling of being treated as if we are guests checking into the Circus Circus Hotel/Casino in Reno. Booked? Like a hotel? What? How does that happen? And what does this really mean for Maya? I understand that she needs to make counts and blood recovery can take time. But a 12 day delay due to logistics? Well that just sort of pisses me off.

It is most certainly not the nurse’s fault and she was kind to put me on hold and go ask (for the 4th time) what this might mean for Maya’s ultimate prognosis and chance of relapse. She returned with “in the grand scheme of things, this delay really shouldn’t make any difference”. There’s that word again “shouldn’t”. I really wish they would just say “well, we really don’t know…” because they probably don’t know. They see relapse. They don’t know why it happens. But with a protocol so rigid and scripted, it makes my stomach tighten with fear thinking that we aren’t following this well researched road map exactly. I am aware that is probably the perfectionist in me but…I can’t change it. I can just deal with it.

The 12 day delay is stressful but I am trying to move past the anger and “make lemonade”. We made it up to the lake yesterday. It was wonderful and the weather was PERFECT. I think we found the only few hours of stillness among this summer of wind. Maya and Lincoln got to play with their buddy, Liam. Scott and I got to hang with our buddy, Megan. We all got to hang on a beautiful beach with perfection in the air. Since we don’t live on my favorite piece of Earth out in the sea, my isle of Kauai’i, I’m blessed to have Tahoe in our back yard. 24 minutes from our home to the parking lot at Sand Harbor…hard to stay angry when we are able to enjoy that.

Our appointment is Wednesday but we’ll get Maya’s labs checked at the clinic on Monday. Unless she is fighting some sort of virus, her counts should be golden. I suppose I won’t hold my breath for that though; expectations tend to disappoint.

Maya the dragon is strong and calm. She was ready for a battle…we were all ready to fight beside her…but the enemy didn’t show. Now she is sitting, mindfully perched up on the battlements of her castle glancing out at her lands. She is looking to the future and the looming attack but we know that with extra rest and preparation, she will collide with her enemies with a heat stronger and hotter than the sun. She will be triumphant.

Love is life.

Jul 19, 2016 11:35pm (Sara)

This morning was the fourth (in a row) “no cry access”. Not even a whimper or a peep was expressed. Angela removed the EMLA cream covered in a small sized tegaderm that I had placed on Maya’s port site while waiting in the drive way of Gramma and Grandpa Morrison’s as Scott took Lincoln in to hang with them for the morning. I let the three year old determine how much cream was placed on the sticker just prior to placing it over the port site so today’s goop happily oozed from beneath the tegaderm. Maya’s port (aka Boodah button) is surgically placed about 2 inches above her three year old nipple…also right where Diono’s RXT purple suede car seat strap safely rests snugly against her chest. I’m always nervous that the cream has moved so much that it won’t work appropriately. The good news is that she didn’t feel a darn thing as the 3/4 inch needle was stabbed into her chest. Angela said “One, two, three, pinch”……nothing. Maya felt nothing. Angela is most certainly one of our angels. Maya has become such a professional cancer patient I don’t know whether to be stoked or to weep. I usually feel a combination of both those feelings constantly or at least consistently through each day.

We spent a lot of the morning at the Starbucks at Renown waiting for lab results. Dr. Salo’s office is having to deal with a bit of bureaucracy in the way they get lab results back. It sounds like since they are a relatively new clinic, they are running into issues; it takes less than an hour to get results back when we get them drawn at the infusion center but it can be hours when we are at the consortium (Dr. Salo’s outpatient office). We could just head home after the draw but if she were to need a transfusion, we’d be turning around again. So we hang out at the Starbucks (as Maya calls the StarBox).

Maya’s ANC is 590. While this is up 200 since Friday, she didn’t make it for the second time. Even her monocytes were down a little…which means that I have no idea if we are on our way up or back down. When I spoke with Angela, she was waiting on a call from Oakland to determine if we would be able to get in for a lumbar puncture on Friday or if we’d have to wait till Monday. The short notice admissions need to be handled carefully…we don’t want to show up and not have room on 5 South (the neutropenic unit). She will call us tomorrow to discuss if we should come back to check labs again Thursday for a Friday admission to Oakland or if we should wait to check Friday for a Monday admission. Angela is very nice to try and answer my panic induced questions: is this amount of delay normal? Does it change her ultimate prognosis – I mean there is a very intense protocol that is well scripted for good reason…does a week change things much? She mentioned that it is more normal for kids to need more time for blood recovery during this phase than is it to make counts right away.  Great. Thank you. I wish I felt better but for some reason is still feel like I wanna throw up.

I want this phase to be over with. It just keeps getting more pushed back. The next phase of chemo has assaulting side effects. Little Alicia has already needed blood and yesterday she needed platelets. Its a week and a half of home infusions where we will be de-accessing Maya and infusing her with chemo on our own. She’ll have an ANC of zero and we have at least two days in Oakland. We’ll leave Lincoln here with family and I know he’ll be safe but…its our first night away from each other and I wish it was for better reason. I get anxiety leaving my children and Scott no matter what…this just seems like a super lame thing to “initiate” the sleep overs. Scheduling is a nightmare these days. I’m so grateful to have the job I do but now I’m feeling pressed and like I won’t make my commitments. I know it will be okay but I’m not the kind of person that is “okay” with it. I care about my job, the families that I help, my obligations to hold my license. Its a real “thing” and I get nervous about it. Because I love my job. It makes me so happy and fulfilled…and helps us pay bills.

I spoke with a few of “cancer moms” today….that sounds weird but you know what I mean right?  Heather, has quickly become such a dear friend and we haven’t even met in person. Thank you Heather. She puts things in a way that makes me breathe a little easier. Janet, Ethan’s mom, reminded me that I really have no control and that it is okay. Sometimes I need to remember that. Iris, Victoria’s mom, shared experiences with me today that made me feel less crazy for feeling the way I do. There are so many wonderful people I have met through this experience that help me get through each day. They also help me problem solve. After talking with each of the mom’s I realized…maybe they are on to something. Iris mentioned that Victoria’s ANC would be suppressed and they figured out that once she stopped stressing about her immunity or the pending pathophysiology exam she was studying for…her ANC would rise. Heather told me to take Maya and do something fun that she might not have the energy to do soon….Alicia’s blood recovery has been faster than Maya’s…they do fun things. Maybe the are on to something! Maya doesn’t “stress” about her ANC but she has been cooped up in this house and rarely gets to do things.

I have no idea what we can do to help Maya feel less stressed but since Thursday is clear for us (well unless we need more labs) I think we’ll make a trip to Tahoe. Maya hasn’t been this year and she loves it up there. There is something very healing up there so…instead of trying to figure out how I can get my refrigerator to dispense Pinot Grigio…maybe we should try the Lake.

Love is life.

Jul 19, 2016 11:16am (Scott)

Hoping for strong numbers this morning. Update later today.

Jul 14, 2016 8:51pm (Sara)

We will not be traveling to Oakland tomorrow. Maya continues to be very neutropenic with an ANC of only 360. This means we are postponed for at least another week. We will check her labs again on Tuesday and if she is showing signs of repletion… We have another appointment scheduled in Oakland on Thursday.

Today’s visit to the lab went fine. She continues to show bravery and strength. Three times in a row there have been no tears during her access. While there she met a new friend (9 month old). He was there getting an IV – thankful it was not for oncology concerns just other pediatric “stuffs”. We also saw our buddy Ethan and his family. It is always wonderful to run into them and it feels like forever since we’ve seen them. It was great to catch up with them and it appears that Ethan is doing well. His labs are much better than Maya’s and while he is technically a week behind, he might actually be ahead of Maya as of next week. Here’s hoping he gets to stay on track.

Alicia, the Unicorn, is also trucking along. Love and strength to her and her family as they get through this tough time. Thank you for forging the way and making the unknown a little less unknown. She needed some packed red blood cells for lunch today (blood transfusions are very common this phase).

Well…Maya did not need platelets or packed red blood cells today and all of her labs aside from her white blood cells and ANC look good. Liver and kidney function look fine and while her ANC is low, her monocytes are higher than they were last week. This means that her body is building up again and we should see a lift soon. Today is day 13 out from her last dose of DOXO so it isn’t surprising she is low still. We were fairly warned…just sucks to not be heading into the weekend a few days closer to the end of this phase.

Maya is rebuilding again. We know she was (and will be) attacked this phase. We are prepared and ready for the battle. She feels okay and at least isn’t showing signs of weakness. Bring it on chemo. Face the dragon. Face the fire.

Love is life.

Jul 12, 2016 11:39pm (Sara)

Sometimes the feeling of being out of control is wonderful. Like roller coasters, sledding, falling in Love, and (in my case) surfing. It can make one feel truly alive yet vulnerable. Vulnerability isn’t always a negative experience and can lead to the humbling of the arrogant or offer the wonder of mortality to the daredevil. Vulnerability can help in the grounding of the dreamer. Grounding…not meant to extinguish a dream but to pull the foundation of the goal closer to the Earth so that it may be put into the plan….so it can be more than just a wish. Feeling out of control is a growing experience; it is the organized feeling of the chaos we are surrounded by.

Feeling out of control can also be terrifying. It can be sickening and maddening. Someone’s unstable or diminishing mentation, substance abuse, waiting on diagnostic evaluations, losing a loved one, not knowing what is wrong with your child, politics, laws that don’t make sense. Cancer. Feeling like you don’t have any control over something can be frustrating…feeling like you don’t have control over anything can sometimes be debilitating. I often dream that I am falling. Off cliffs. Out of planes. Down dark holes. I’m not ignorant to the idea that this is my brain feeling out of control. I don’t say it much out loud because I suppose I don’t want to surrender to it. Like I don’t want to admit it even though I don’t really feel bad about feeling out of control. I mean…of course I feel out of control. My child’s white blood cells randomly mutated to produce a mass amount of wasteful cells that ultimately crowded out her red blood cells and platelets…and couldn’t even fight infection. Now she needs 2.5 years of poison to find every last tiny mutated white blood cell so it doesn’t come back. No reason for it. As I’ve said before it was just a giant crappy shot in the dark. Terrifying.

We all know life is precious; it is a gift we get to live for an indeterminable amount of time with amazingly wonderful souls…on this incredible planet. While we all know life can be swiftly taken from any of us…we can get so caught up in it. It is beautiful and ugly at the same time. The best and the worst part about being a human: we feel too much. I feel way too much for my own good but I’m not mad at it.

In light of recent current events, I have felt more out of control and angry lately…for many reasons. As a 34 year old, I have completely surrendered to my sensitivity and understand that I will react in ways that might be dramatic (unfortunately posting on Facebook doesn’t really satiate my need to express my anger…I think I need a punching ball in the garage). I’m angry at those that do me, my family, my friends wrong or threaten our safely in any way. I cry and ache for families searching for answers…answers that may or may not be easy to hear…or even possible to fathom. I hold my friends’ hands when they get bad news and I cry tears of joy with them when they win. I can’t stand the politics right now yet for some reason I find great distraction from the shit show. The shootings, the hate, the discrimination, the hunger. From my eyes, cancer or not, this world is going through a tough transition and I hope…I have to believe that it is a growing pain.

As for my family….we are surviving. The feeling of control has been absent for a while now but I’m learning to adapt. I have cried while giggling at my childs bald head because it is the softest thing I have felt since her bottom as a newborn. She is darling. It is also a little hard to accept and adjust to. I’m not gonna lie…there is something seriously alarming about a bald, naked three year old – stick thin with a protruding belly from steroids staring at me while I’m sleeping at 1am. It was scary enough when she had hair…

The chances of us making our 9:30am appointment in Oakland on Friday are pretty dim. Maya’s ANC was only 390 on Friday and it needs to be close to 750 on Thursday for us to even consider driving over the hill. Fingers crossed for a fast recovery these next couple days. Maya’s spirits are higher than I ever expect them to be and she shows no signs of missing her hair. She is NO HAIR DONT CARE with her cousin Liam.

Thanks for being there. Even when my brain is out of control and just needs to get things out.

Love is Life.

Jul 7, 2016 1:13pm (Sara)

I can usually tell when we’ve been too quiet and that it is time to write an update. Text messages, Facebook messenger, phone calls…they all start flowing in. It is truly a wonderful feeling and a reminder that Maya (and this family) has such a vast support system. It reminds me that we are not going through this alone and Maya’s warriors are right behind us. The fact that our Caring Bridge journal has over 8200 visits is proof of that with out doubt. So thank you all for reminding me that we are loved.

Scott’s words last night were perfect. There isn’t much more of an update I can think of. Tomorrow we will get her labs drawn to find out where she is at and if she needs any blood or platelets. We are going to go to the clinic rather than the local LabCorp just in case she’ll need a transfusion.

One more dose of decadron. One more dose. It is absolutely amazing watching a three year old eat more than what an adult woman can eat. I had a discussion with a colleague yesterday and she helped me to understand what might be going on. When children go through trauma and they lose control, they (just like all of us) find ways of coping. Stress eating is a real thing and when you couple that with a steroid that increases appetite…a three year old can pound a whole bag of popcorn and 1 and a 1/2 bean and cheese tortillas.

I know there is some humor in the fact that Maya can eat an intense amount and that there is some basic survival to it as well. It all makes sense to me but…it still terrifies me to watch. I can’t tell if it’s the scared mommy in me or the registered dietitian that cringes at all the salty foods she is craving and mindlessly consuming. Witnessing her put piece after piece into her mouth at 3am and then screaming when I try to distract her from it is difficult. But as simple of the idea it is, my colleague helped me to realize that this could actually mean she is coping. She is doing what she has to do….to survive and deal with all this messed up stuff she is dealing with. And she’s doing it successfully not matter what my opinions of her food intake. It is difficult to watch but I am hopeful with this new outlook that Maya is very normal. I am hopeful that she will come out the other end of this just as happy and mentally healthy as she was before.

Maya’s friend, Alicia the Unicorn, has started the part two of Delayed intensification. She was admitted to the hospital for her long infusion of chemo and observation and I think she is now at home or close to it. Her mom, Heather, and I have become friends and we check in on each other often. I am so blessed to have my virtual friend and always love the pictures and videos her family sends. The recent pictures of Alicia are very No Hair Don’t Care. Little thing lost her hair very quickly and I think it is helping Maya cope.

Last night I had to flip my pillow over because there was so much hair left on it from Maya’s earlier nap. Needless to say she is well on her way to No Hair Don’t Care…and we just keep reassuring her that her head is so super cute.

Thank you for your wonderful support. Thank you for your thoughts and prayers and love and light and strength.

I found out this morning there is yet one more local boy diagnosed with B-ALL. I don’t have details but my heart is breaking for the family. We are so lucky this is not a death sentence but man…it took a long time till it stopped feeling like one. I have offered my information via the acquaintances we share. I hope they reach out. And if they don’t, I hope they have even half the support that we do.

There were times when my mind and heart were not dark, they were empty. I was empty and yet you all helped fill me up again. I wish that for everyone. Thank you.

Love is Life.