Month: June 2016

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.

Jun 6, 2016 2:05pm (Sara)

Today at 3pm, we will take Maya to get her first Echocardiogram (ECHO). This is an ultra sound of Maya’s heart. Before anyone worries too much, Maya is doing really well. She had her last infusion of Interim Maintenance 1 on Thursday. The Dragon Princess has prevailed during this phase. She received all of her escalated doses of IV Methotrextate and IV Vincristine. And now we have two weeks off. We’ll take em. And we are hoping to enjoy them. As long as every one stays healthy (and Maya stays out of the hospital), we get to celebrate Grandma and Grandpa Morrison’s (Grama Sandy and Bapa Lance) 50th wedding anniversary. A visit with Aunties, Uncles, Pies, and Cousins have been filling Maya’s mind and heart. She is so excited to meet her new cousins and spend time with family.

Maya continues to feel pretty well. She is a bit more sleepy some days but for the most part, I feel like she is her normal self. Maya’s labs looked great going into the last infusion. WBC: 3.9, Hgb: 11.7, Platelets: 313, ANC: 1470.  I’m not sure we could ask for better numbers. We will get a pokey butterfly on Thursday to monitor her counts before we head into the weekend of family and celebration but unless there is an underlying bug in her system, we anticipate good numbers.

Back to Maya’s ECHO. This is part of the protocol for ALL treatment. In fact, many chemo kids need to have their cardiac health monitored at some point. Because Maya starts Delayed Intensification next week (June 17th – pending counts), they need to be sure her heart can handle the more intense chemo that we start. The doctor never really talked to us about this so I was (yet again) thankful for the road maps I requested at the beginning of consolidation. The road map (which I will post eventually) have little letters that indicate what labs and diagnostics will be preformed. There is a little letter “E” next to the other letters…the key to the map shows this is an ECHO. So at least, while I was a little thrown off guard when Children’s Heart Center called to schedule an ECHO, I knew where to look to make sure it wasn’t something we should really be concerned about. I also called Dr. Salo’s office to be sure it was just protocol. And it is. AND I am thankful that Children’s Heart Center has a Carson City clinic once  in a while. We get to go meet the cardiologist, Dr. Ludwig, today.

I guess since Dr. Ludwig will be conducting the ultrasound, we get any “results” back right away. I have know idea what to expect for the next phase of treatment if we get bad news from the ECHO….but we aren’t expecting anything but good news today. I have a great amount of faith that Maya The Dragon’s heart is more than healthy enough to handle what she has coming. Mommy’s on the other hand….I’m just grateful they aren’t doing diagnostics on mommy…I’m not sure I can handle a picture of my heart right now. Even though our dragon is strong, she is wild, she is breathing fire. She is beautiful, she is happy, she is growing, she is loving, she is funny, she is brilliant. Even though our dragon is thriving and flying, she cannot help keep my heart from breaking.

Love is Life.

Jun 1, 2016 12:13am (Sara)

Sometimes things go so smoothly that the days just pass….and pretty soon we are getting the automated calls that Maya has another appointment on Thursday. Has it really been almost 10 days? Are we really due for chemo…again?? When I think back on wakeful nights and isolated weekends, I guess time doesn’t seem like it flies by. But then I realize that it’s going to be June tomorrow. I feel like I forgot to show up for Spring. Maybe I wasn’t invited.

Maya and Lincoln are really doing well. Maya continues to tolerate the escalating dose of methotrexate in addition to her vincristine well. She has complaints of “tingly toes” and she can point to the ones that bother her but it has not inhibited any walking…or tapping…or dancing.

Being isolated continues to be the worst part this phase. For her and for us. I feel so lucky to be able to go to work. I am surrounded by amazing people that support and care for me. I also get to work with families and feel like I make a difference in their worlds. I couldn’t ask for a better job. I know that some people have to completely stop working during this time. I don’t know what I would do without the vast support and amazing child care coverage options. Between Grandma Sandy, Bapa Lance,BaPa Pat, Aunt Katie and the wonderful visits from Grandma Bella…I can work and feel comfortable knowing the kids are safe and less available to catch a bug.

Maya can get pretty, what we call, stinky. This is her stubborn dragon that pushes and presses and tests and screams. She is able to enjoy independent play but she also requires a mass amount of attention. Something I very much appreciated from WNC’s amazing teachers. She misses other children and especially her friends. Lincoln and Maya are wonderful siblings and I’m so amazingly happy that they love each other…but…as Maya throws tantrums and fits when she doesn’t get her way, Lincoln will mimic. It’s quite frustrating and I’m tired.

People ask how I’m doing…a lot. I sort of laughed today because I answered “tired and cranky” but reality is…that’s not leukemia’s fault. I really try not to complain all that much especially since most parents of small children….well they probably don’t want to hear it. I know I’m preaching to the choir. There are nights that Maya is quite restless and her legs hurt or tingle. That is from the chemo. But all in all, we are surviving a threenager that also happens to be a dragon.

Parenting as hard. Especially if you want to be any good at it. I don’t know how my parents made it look so easy. Thank you Moma and Dad. You’re amazing. My uncle told me a while ago “you get to pay for your raisin’ when you’re raisin’ your own”. I think it’s his way of saying “karma is a B”. I’m sorry, I’m sorry, I’m sorry! I’m sorry for all my naughtiness as a child!!

It’s hard to think that a chemo kid could get spoiled but…it is a very fine line. One that Scott and I are learning to draw. It is a very different world and we feel the void from not having the teachers and other children from school help guide Maya to be the best little girl she can be. I cannot wait until she can play with children again. After delayed intensification, I am hopeful that we’ll have more good days and weeks. Until then…we protect her.

We are protecting our dragon. Her numbers have proven she is strong but the next several weeks are vital for her cure rate. If she cannot move forward for what ever reason, it likely changes the integrity of her treatment. I feel selfish keeping her to her den. But I cannot risk it yet. I’m not sure I will ever be one hundred percent comfortable with her out and about again…but one day I will have to at least find the nerve to try.

Love is Life.