Uncategorized

Jul 6, 2016 11:03pm (Scott)

There’s no doubt this phase is tough. Three doses of the red devil seven days apart compounding their effects with a chaser of steroids and a few other drugs that play quieter supporting roles, and this adds up to one pretty shitty week for a three year old. Her belly is starting to protrude again, there are issues with constipation, there is intense hunger, and her moods are delicate. Sleep is fleeting and interrupted by everything in the previous sentence. But here’s the good news… tomorrow is our last day of steroids for a while and will lead us into a week long break from chemo. In this phase we’re thankful for Netflix and tortillas and popcorn and air conditioning. And I’m thankful for the enduring toughness of this three year old little dragon girl whose spirit powers through it all. She makes this phase look like a garden variety belly ache, and I am in awe.

Maya makes things easy on us–takes her meds without fighting or complaining and tells us what she needs and how she feels when we’re concerned. But this phase is hard on Sara and me. I spent today at home with Maya and Lincoln (supported also by an awesome force of nature known as Grandma Bella), and watched her minute to minute efforts to power through discomfort, restlessness, and frustration. I carried her around a fair amount as her legs have lost some strength, and I pulled bunches of her hair off my shoulders after. There are more hurdles ahead–making counts to move on and a trip to Oakland for a few nights for observation and a slow infusion of more drugs. But there is light there too, just ahead and growing. We’ll soon clear the end of DI and revisit the smooth sailing of interim maintenance II. Then it’s preparation for the long, repetitious maintenance phase and the ringing of bells.

We are so thankful for the caring support, and the endurance of all who’ve continued to bolster our spirits and cheer our progress. Thank you to Linda, Dre, and Everyone at the WNC CDC for the continued fundraising efforts; thank you to Marian, Frank, and the Carson City Elks Lodge #2177 and friends for the generous donations, warm thoughts, and a beautiful quilt; thank you to Cousin Mikey for the talent and love infused in the bonfire funds t-shirts (available only until July 11th).

I’ve told Maya at least twice today that there’s just one more day of steroids, and then she can start to feel more normal again–she always nods in trust and understanding as she breathes through the weird jitters and twitches that highlight the steroid’s ever increasing list of side effects. Just one more day–two more doses and you’re done… and I’m certain she’s not the one in that conversation who really needs the reassurance.

We’re getting there. This is a necessary part of the journey. And we are so thankful for your thoughts and prayers and kind words.

Thank you.

Jul 1, 2016 11:36pm (Sara)

Maya received her third dose of Doxorubicin (DOXO) yesterday. Hopefully, this was her LAST dose of the red chemo. This whole phase is called Delayed Intensification (aka. Red Devil) but we are thankful that there are only three doses of the Doxorubicin. Doxo has a “lifetime” dose and we will need to remember the amount that she has been given. Add it to the list of numbers we need in our lives. We’ll need to remember and keep track in case she ever needs it again in her life. Along with cardiac monitoring, routine blood work, monitoring for other cancers, this responsibility will ultimately be passed down to Maya. Doxo can lead to diminished cardiac function (leaky valves and such) so if she has to fight a battle like this in her future, we (or she) will need to inform the oncologist of how much she has been given so far. Thankfully because she is “standard risk ALL”, she isn’t given too much. This saves some room in case she needs more rounds later on down her road.

The second part of Delayed Intensification has its own cast of characters that will wreak havoc on Maya’s kingdom but we shall be introduced to them in a few weeks. For now, Maya is just a little bulldozer. How weird that at yesterday’s appointment, we actually expressed some concern that she was feeling fine!??! I mean…she isn’t feeling 100% normal but with all the chemicals she is clearing, we were certainly expecting a lot more of a mess by now. Dr Salo mentioned that (of course) all kids handle the different phases in their own way and while some kids show signs of depletion by the second week, others might have another good week or so. We are truly holding on to that and trying to enjoy this time as much as possible.

Maya has her challenges. She’s three and a half. Her interaction with her peers was dramatically eliminated, her baby brother became her best friend (and some times her enemy), her parents are ALWAYS around, she has been given more toys than any one person can count, and she has been surrounded by grandparents that give amazing supportive and compassionate attention almost every single day. With all of this…she has quickly become spoiled. It happened so fast. This all happened so fast. I have barely found which way is up in this crazy wave that consumed my life…and yet she adapted to the “new normal” so fast.

I know I have expressed concern about this in the past, but there is definitely a fine line between consoling my sick child and teaching moments. She is fierce. Any one who has spent time with her knows that. She is strong. This is evidenced by each visit to the clinic and tearless port access and lumbar puncture. She is also extremely stubborn. We have established that this can be a great character trait (ugh). She is also sick. She doesn’t know how to handle the “not feeling goods”. She watches more TV than I would have ever condoned before cancer. That is one thing. Its the screams, the tears, the tantrums, the fits….the “but I want it”s. I know I am not alone when I say….it can make a mommy go crazy! But I’m also sort of stuck. I want to discipline. Discipline is important to me. To my family. To my children’s future. You’d think it would be easy to determine if your child is throwing a fit because of her natural, innate, stubbornness or if its their inability to communicate how they really feel. But I can’t. If someone has any ideas…I’m open.

Overall, Maya is doing quite well. Yesterday’s clinic visit went very well and it always amazes me how much Maya enjoys it there. Even when the night before she concludes “that is not my idea” when discussing how we get to go to clinic the next day. She always shows up and makes every one feel good. From her smiles to strangers in the elevator that exude from her eyes, even though they are shadowed by a hello kitty mask, to the phone that lets the staff know we are there (its a locked unit)….”MAYA’S HERE”. We laugh every time because she hollers it so loud that she probably doesn’t even need the phone. Ty (the wonderful woman that answers the phone) has one of the best laughs I have heard in a long time…and she always finds a place during the visit to fill my world up with it. Even if its the laugh I hear while putting down the phone and entering the infusion clinic.

She had ZERO tears during her buddah button access this time. Sometimes she just chooses Strong and Calm…even she doesn’t have a reason. We met a new friend, “V for Victor” there this week too. He has a very different battle than Maya but he is very much so “no hair don’t care”. He has just returned back to Nevada after a whole year in Oakland. My heart goes out to him and his family as they trudge through this intense time and as they find the answers they need to move forward.

Maya sparked up wonderful conversations with her new friend while they were both kickin’ it on their tricycles (the play room has some awesome toys). He’s a little older than her but they hit it off. In fact, they were planning their own play dates with in 10 minutes of knowing each other. “You can come to my house, I have a lot….I mean A LOT of trains” says Victor. “You can come to my house too! I don’t have any trains, I don’t think, but I have a lot…A LOT…of toys”, says Maya. As painful as it is to see another child battling cancer, it always makes Maya find a little more “normal” in her life. It helps. In some weird way it helps me too.

We always end up staying longer than we think we will. Even when things go smooth and we can get out of there. Even now that we have an amazing spray that helps lift the bandage adhesive off so it doesn’t take 15 minutes tearing the tegaderm away form sensitive chemo skin. Even when we can leave after a short infusion day, we find ourselves standing in the hallway talking with the amazing nurses and staff members. Brittany, Mary, and Ty made us feel like they didn’t have anything else to do but to chat with us. We know this isn’t the case but it made us feel good. We give them a few more pieces into our worlds and we get a few in return. This all helps.

Motherly assessment: WBC 2.4, Hgb: 12.3, Platelets: 198, ANC….310. So aside from the ANC, she appears to be good. Her liver function and hydration look good and she feels “good” although she is definitely more pale today. It is truly unfortunate that the way she feels isn’t an indicator of her immunity. 310 is low….but you certainly wouldn’t guess it by the way she acts. She is pooping (yay for abdominal massage every night). She is still eating well. She is just plowing through this thing so far like a bulldozer on some sand. She doesn’t feel awesome but she certainly isn’t terrible. She requested a hair cut. After seeing her buddy Alicia’s (the unicorn) haircut, she wanted her hair “all off”. I talked her into a more moderate cut. We all like it for now…though we anticipate the full force exodus soon. More steroids started today. Please send us strength to have patience to deal with the fierce, strong willed, sort of feeling crappy, deca-dragon of a three year old. Maya is flying high is holding pattern for now. She is catching her breath and making sure she is ready to attack when necessary. I believe we are experiencing the calm before the storm for now.
We cannot thank everyone enough. There are not enough minutes in my life, breaths in my body to thank everyone the way you all deserve.
Love is Life.

Jun 25, 2016 10:43pm (Scott)

Maya’s latest clinic visit went smoothly. We ‘welcomed’ the second week of DI with a new dose of doxorubicin (aka koolaid kicker), vincristine, and an ANC north of 3000. The elevated cell counts are a side benefit of steroid therapy.  Friday begins a one week break from decadron (steroid) and marks the 8 day point since the first dose of doxo–its effects hit a peak around 10 to 14 days, so we’ll expect much lower numbers on Thursday.

We celebrated Bapa Pat’s birthday Saturday evening with a BBQ (see Linco’s party shades) and small gathering at home. We took advantage of Maya’s strong ANC, and she had an absolute blast. She and Lincoln played in the backyard with two Grandmas, two Bapas, and one superstar auntie as the sun was sinking and the summer temp was cooling off. I’m sure she hasn’t felt great in quite a while with all the meds she’s on, but you wouldn’t know it watching her run, jump, scream, and play. Her joy and excitement continues to transcend the chemo funk.

Earlier in the day, Sara and I watched a speech given by our friend Victoria Matthews at the HOSA (Health Occupations Students of America) International Conference in Nashville. Victoria is a very impressive young woman working through her sophomore year in high school despite being treated for a rare form of AML (acute myeloid leukemia). You can watch her speech here (you will need to enter an email to get access; the speech starts at minute 52). As Sara and I watched Victoria recount the ups and downs of her journey from diagnosis through seven months of treatment, we were both struck by her confidence, composure, and openness. For quite some time before her experience with AML, Victoria’s career goals were focused on the medical field–in particular a specialization in pediatric oncology… extraordinary circumstances for an extraordinary young woman with undeniable potential. As we listened and contemplated all the contributions Victoria will make toward treating and curing childhood illnesses, Maya felt compelled to interrupt with, “If any of you guys need a new tissue there’s a whole thing of them right here on the table.” Sweet kid.

We’ve met so many kids and families through our experiences with Oakland Children’s Hospital, the Renown Children’s Infusion Clinic, etc. finding their way through diagnosis, treatment, successes, and setbacks. They fight as they live, day to day with the small struggles over fear of needles and procedures and side effects and a plethora of meds on very strict schedules and limitations on refills and insurance coverage. But in between those small battles there are glimpses of normal life–it does go on, and it gives us hope like the familiar landmarks we pass returning from a long road trip. We know that just over the horizon things look more like our natural surroundings–more and more like home. The kids continue to grow–new words and questions and clothes outgrown. They grow through this as though growing is the obvious priority, which of course it is. It’s only everyone else who needs to be reminded that being sick isn’t the most important thing in the world.

Thank you Victoria, for having the courage and grit to make the drive more than 2000 miles and more than 30 hours to Nashville to deliver a speech and make a firm statement that your dreams and your life come first. Maya is pretty sure you’re a superstar, and I’m pretty sure she’s right.

Thank you everyone for your continued support and love. We wish you all good health, success, and courage.  

June 21, 2016 8:31pm (Sara)

Of course there are breakdowns to endure. This is to be expected. Yes, Maya’s steroid induced frustrations while being tired and feeling like crap, while working through leg pain, nasty meds to make sure her poop doesn’t make her bleed and cause an infection, while having uncontrollable tearful out bursts and breakdowns….yes those are heartbreaking. They are mostly hard because quite often there is nothing anyone in this world can do in that moment to make her feel better. We all just have to ride out the storm, snuggle (if she isn’t too fiery hot) and hope it’s the typical short term event. Her breakdowns are understandable.

But if breakdowns are expected…then why do MY breakdowns take me by surprise?!? It’s amazing to me that after all of the procedures, chemo infusions, nightmares, and observations of a 3/4 inch needle inserted into my child’s chest…that I no longer cry at each one of them. Nope. I cry at random things like forgetting to refill her decadron prescription. Even though we have options and my dad is willing to run down to SaveMart Pharmacy and everything will be just fine…I cry. Like kind of hard. No hiccups but I needed a minute in the bathroom by myself (if I was upstairs I would have been in the closet).

Of course the bathroom didn’t hide me from my sweet dragon child. She can be so empathetic too, “why are you crying mommy?” While she hands me a tissue. What am I supposed to say? I’m just emotional?! I’m just frustrated? I’m scared. I’m scared that I will screw this (what feels like forever) treatment up at some point. I wonder if she thinks I breakdown over the smallest things. She cries at scary things we all can see…I cry at the scary things I don’t even know about.

Tonight it took me a little longer to recover from the tears. After I got off the phone with the pharmacy I couldn’t quite stop crying. I cry because sometimes my brain hurts and I just wish things were a “weeee bit” easier. You see they make a 2mg tab of decadron and a 0.5mg tab…but oh wait she needs 6.5mg a day. So we do 3.5mg in the morning and 3 at night because it causes some restlessness. So here I go…Doo Dee Doo, making Maya’s evening cocktail….but wait, I’m out of the 2mg. Shit. I forgot to get the remaining amount today. Well I can just load her up on 0.5mg tonight and tomorrow then I’ll pick up more. Nope. Can’t do that cuz we need those 0.5mg tabs for the next pulse of decadron. Eff, I have to call Rita at the pharmacy. Well, between her problem solving (and listening skills), and my dad’s availability to run an errand…I no longer felt like such a shit show….more of just a hot mess (but that’s more of my baseline these days anyways).

I’m not sure how a 34 year old mommy can be more of a mess than a 3 year old on chemo and steroids but…such is my life. My tears took some time to subside tonight because while this dragon child of mine might have her messy times, over all she is simply remarkable. She just does what she needs to do. What we need her to do. I cried tonight while I watched her take that damn decadron. I have watched her take her medications for over 4 months now…tonight some how feels harder and yet…she just does it. She just always does it. No questions (okay some questions) asked. I wish I felt as strong as she is.

I stated that I would carry her through this. As I read those words again I felt like a fraud. I will do what ever she needs me to do…to get her through this battle and the next…but I have no illusions that her strength is what carries me.

I breathe a spark compared to her mighty dragon fire. She inspires me. There is nothing weak about this dragon. There maybe weakness within me but I promise to work on getting stronger myself. As I wear it around my wrist in multiple colors, I must become Strong and Calm.
Love is Life.

Jun 19, 2016 10:38pm (Sara)

Delayed Intensification is the 4th phase of this crazy journey and it includes the 5th and 6th months of treatment. 8 weeks. We’ve been dreading this phase since the end of induction. It’s intimidating because, one: the treatment is gnarly and looks similar to induction, and two: the terrifying nickname is “the Red Devil”. It gets its nickname because the Doxo chemo is so red. Not quite as deep as packed red blood cells…more like an artificial red flavored beverage. I mean…why do they have to call it the “red devil”. Why not Koolaid Kicker? Watermelon Weary? Scarlet Sucker Punch?

The next 4 weeks of treatment looks as follows: we started with making counts. As Scotty mentioned before, her blood recovery was great so we moved forward. DI started with a lumbar puncture with intrathecal (infusion into the spinal fluid) methotrexate. This is still prophylactic to make sure the leukemic cells don’t come back in her central nervous system. Reminder – meds and chemo given systemically (in the blood) do not travel to the central nervous system well. She then got IV vincristine and the new “red devil” Doxorubicin. She also started Decadron (steroids) again. She will have 3 weekly infusions of the vincristine and 3 weekly infusions of Doxo. She will THANKFULLY only take the decadron for 7 consecutive days. Then she gets 7 days off before 7 more consecutive days. In addition to all this, tomorrow she will get Pegasaraginase (PEG) for the second time.

PEG is the IV chemo she received while we were in Oakland on day 4. This is the chemo that can have mild to severe allergic reactions. We are not exactly sure what the chances are that Maya will have a reaction but it’s worrisome enough to require the drug to infuse over two hours plus an observation period of at least two hours. That’s tomorrow at 1pm.

Today. As Maya was falling asleep tonight she muttered “today was a fun day”. She mentioned her favorite part was “going outside”. It amazing that, for Maya, the hardest part of this whole thing isn’t the nausea. It’s not the leg pain or the tingly toes. It isn’t even the uncontrollable mood swings from the decadron. It isn’t the nasty bactrim that she has to take twice a day only on the weekends. Or the “spicy” Zantac she needs to settle her stomach while on decadron. It isn’t even the constipation or the restlessness. It’s the small things we all take advantage of. It’s not being able to go outside when it’s windy…and it’s been so windy. It’s the isolation. It’s driving past the park on our way to the clinic and hearing us say “I’m sorry Beans, we can’t go to the park” when she asks if she gets to go there again.

She feels “meh”. She hasn’t thrown up but we have definitely kept on top of the nausea with some Zofran. I’m going to try to pull back tomorrow since it can contribute to constipation…in addition to the chemo. She’ll likely need more at the next infusion of doxo.

She sort of looks pale. She slept in today for the first time in her life…though I wish it was because of any other reason than not feeling well. She has started to snap at random things as the effects of decadron have already crept in. She has great times during the day then…boom. Tears for reasons even she doesn’t know of.

Today was a good day. Yesterday too. We all got to spend time with Auntie Megan, Uncle Adam, and her buddy Liam yesterday. She was certainly not 100% but she faked it like the best would.

Today we celebrated two of the most amazing men in my world. My father and Maya’s father. We couldn’t be luckier to have such incredible fathers. They both love us with all their hearts and will do anything to make us smile. They cry when we cry and they grow when we grow. Both Scotty and my dad have saved my life and I am grateful for them both every moment of my life. I truly hope Maya will feel the same in 30 years. Cheers to all fathers everywhere.

Today was a day of flight. Maya released her 5 butterflies that she raised. She watched daddy delicately take them out of the cage and she placed her hand out to hold them. She was fearless of them. She watched them fly away and wished them luck.

I watched her watch the butterflies fly. It was as if she was riding their wings…she was flying with them. She IS flying with them. Right now she is in need of some support. Some extra wind beneath her wings. I promise little Dragon…I will be strong. No matter what happens. No matter how hard it is, I will help carry you through the next battle. We will fight. We will breath fire. We will fly. We will win.

Love is Life.

Jun 18, 2016 12:03am (Scott)

The first day of delayed intensification has been eerily smooth. Maybe that’s a result of preparing for the worst, or maybe Maya’s strength has made things easier on her parents once again.

Maya’s labs this morning were strong: ANC 1060, HGB 12.3, WBC 3.6, Platelets 276. She’s been sleeping much better over the past week or so, and Sara and I were very glad to see she was in a great mood and excited to visit her friends (nurses, doctors, staff, other kids) at the clinic. Accessing her port was a little more dramatic than usual; she put up a bit of protest probably because we hadn’t been through it in a couple weeks, but I reminded her there were two ways things could go, and she chose the one where she maintained more control–little more strong than calm this morning, but we’ll take it.

After a few hours at the clinic which included intrathecal methotrexate, IV vincristine, IV doxorubicin, and a giant butterfly-shaped cookie with green icing, we headed home to restock the home pharmacy and finalize our schedule of meds. Aside from a little extra loopy 3-year old behavior and some restlessness in the afternoon, things seem close to normal. We expect the acute effects of the doxo, aka red devil (see infusion picture), to show up anytime: nausea, hair loss, mouth sores. The effects on blood counts start to show at 10 to 14 days after the dose. At that point we’ll see Maya’s numbers sink back near zero.

In preparation for our return to a neutropenic lifestyle, we’ve gotten to work sterilizing the house and transitioning away from using the evaporative cooler. Being outside on a windy day can be dangerous with an ANC below 750, so pumping outside air through a swamp cooler to stay comfortable in summer isn’t a great idea. We’re very happy to say our house now sports a brand new AC system with UV air filtration. We’d like to thank Troy, Brandon, Mike, and the other guys at RHP Mechanical Systems who adjusted their schedules and diligently worked to get things installed so Maya wouldn’t have to suffer even a minute of hot temperatures in her bubble-home for the next 8 to 10 weeks.

Thank you to everyone for your continued care and support. Because of you we’re as strong as can be leading into Maya’s toughest phase of treatment. The tireless caregivers, timely meals, help with chores and maintenance, support from coworkers, kind comments, thoughts and prayers… the outpouring of love and energy both humbles and sustains us. In a time when every news story seems full with unsettling chaos, infantile squabbles, and persistent pain, I can tell you there is also an undeniable, unshakable foundation of goodness, care, and love in this world. It’s what gives Maya the opportunity to float above the panicked dichotomy–anger or fear… instead she’s empowered to seek other avenues, to be strong or calm or even to be both at the same time. We will get through this together.

Thank you.

(Below is a pic of Maya with her cousin Emma)

Jun 17, 2016 12:15pm (Scott)

Numbers are strong this morning, so we’re ready to proceed. More updates to follow.

Jun 12, 2016 1:58am (Sara)

There is something magical about cousins. I think the Spanish word Primo is a wonderful representation of what cousins are. I know my cousins were my first friends. My first play mates. My first role models. My first shoulders to cry on. My first relationships that needed a conflict resolved – one that is different than a sibling conflict. My cousins cried with me when we lost our grandparents. Our hearts break collectively when one of us lose our parents….maybe because there is a vast ocean of love for our aunties and uncles. My cousins were my first lessons. Small and big.

We got through the weeds together. There are many special parts of life that we shared, and continue to share. The love I have for my cousins…with all my cousins… is stronger than the steel our grandfather welded. It goes higher than the flight our grandmother flew as a WASP. It goes deeper than the blood we share.

This week, Maya has started a bond of her own…with her cousins. This week she met her first cousins Kyle, Emma, and Arrow for the first time in person. And she’s in love. She is already feeling this incredible bond that won’t be fathomable till she’s an adult. The babies might be infants but they are already her favorites. She wants to teach them. Wants to play. Constantly wants to hold them. Feed them. Breathe them in. It’s darling and beautiful to watch. She says “they’ll miss me”…and she’s right. And she will miss them equally.

So far there are five cousins. Maya and Lincoln went from being the only to the oldest in a matter of months. The cousins are magical and fantastic. They are the spark in Maya’s eye and that…is priceless.

The Morrison Clan is growing. This is because two amazing people vowed to take care of each other 50 years ago on June 18th. Sandra and Lance have given me an incredible and beautiful foundation that will help to keep my dragon family strong. Their love is inspiring and I have great faith that, life willing, Scotty and I will have such a long Love and more.

Scott is the most amazingly strong, kind, pragmatic partners one could ever ask for. He gets both his adventure as well as responsibility from Sandra and Lance. They have traveled the world, educated themselves, honored our country, built businesses, survived accidents, educated children of our community, taken care of their dying mother, raised four outstanding children. For me? They have accepted me as a child. They have laughed with me. Loved me. Opened up to me. Let me be me. Let me love their son. Given me their son. Loved my children. Taken care of my children. Enriched my children. Enriched me. And even more.

Sandra and Lance deserve a celebration that is made for royalty. A few years ago I had big plans. I was going to plan a celebration on a cruise, or all inclusive, or Alaska….something amazing. Part of me feels like nothing would have been worthy of what I feel they deserve. But they are so humble. They were more than happy with the quite party at our home here in Carson. They were happy because they were surrounded by their children and their children’s Loves and by their children’s children. And that…is what truly matters.

Thank you Sandra and Lance – Mom and Dad. Cheers to you for 50 years of not just marriage…of Love. You two are a wonderful example of finding what you want and keeping safe.

Love is life.

Jun 6, 2016 11:38pm (Scott)

Thank you to our veterans and military personnel on this annual remembrance of D-Day. Your courage, strength, and willingness to take any threat head-on, no matter how terrifying, is humbling and inspiring.

Today’s echocardiogram went as well as we could have hoped. Maya’s heart is strong and calm as ever, and she handled the new experience with the grace and confidence of an old pro.

Afterward, Maya, Sara, and I visited Yogurt Beach for a treat and to pass on our thanks for the fundraiser they hosted in March. It’s funny how much Maya is naturally like her Mommy–she chose all of Sara’s favorite toppings for her yogurt. . . simply choose all the toppings to ensure you haven’t missed out on anything.

We are four days into our two week ‘chemo break’ before we start delayed intensification (DI). DI is the rough one: red devil, steroids, infusions, lumbar punctures, mouth sores, hair loss, fevers, transfusions. . . and a dash or two of the unknown. We have learned much about Maya’s strength, and how it can help sustain our own. DI will be the phase where Sara and I must return the favor.

There is so much about the next phase we don’t know–Sara and I have not completed regular preparations. We have not put together a new poster-sized calendar for medications and reporting of bodily functions. We have not reviewed drugs and potential side effects, and we don’t know what to expect as far as the day to day level of care Maya will need. But in the coming days, as our two weeks of chemo-free time slips away, we will need to get game faces back on. The storm approaches. There’s no way around it. We will grit our teeth, lower our shoulders, and smash through. On the other side is calm air, maintenance, the bright ring of a bell, and a normal, healthy life for our little Dragon.

People ask very often about Maya. Friends, family, coworkers ask how she’s doing, and we’re so thankful to be in so many thoughts and prayers. The answer, though, is hard–on the one hand she’s doing great, she’s winning, she’s wielding miracle treatments and chemo poisons like dragon’s fire, and she’s dismantling this cancer like it’s easy. On the other hand, this is a long battle with the steepest challenges just ahead. Early points don’t count for much if you don’t finish strong–so far she’s awesome, and she’s positioned to attack DI with the same fury and stubborn will that has gotten us this far. So, I answer that she’s doing fine. Treatment has gone smoothly with few surprises. It’s true kids are amazingly resilient, and she’s no exception. And quietly I worry about what’s on the horizon.

This week we will celebrate. Cautiously, we will celebrate. My brothers and sister, nephews and niece will travel to Carson to help celebrate my parents’ 50th wedding anniversary. To say Maya is enthusiastic about meeting her cousins for the first time would be a dangerous understatement–I think it might be best if we all wear full pads and helmets for the party.

It’s a little early, but happy 50th anniversary, Mom and Dad. You together are an inspiration, and your boundless support is valuable as life. We love you.