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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.

May 23, 2016 3:21pm (Scott)

Just a quick follow up from today’s clinic visit. Maya’s numbers were great: ANC 1200, hemoglobin 11.6. She was given an escalated IV dose of methotrexate and another of vincristine; she also had a lumbar puncture with intrathecal methotrexate.

Then she woke up and ate a giant chocolate muffin (specially selected by Maya’s personal dietician: Mommy. 😉

Special thanks to our new friends Victoria, Iris, and nurse Lindsay — your openness and care have helped our little dragon’s world to grow a bit more today. We wish you all good health and success.

Thank you.

May 23, 2016 10:35am (Scott)

Maya’s port is accessed and blood is drawn for our next little step down the road.
The clinic has become a favorite place for Maya. Sara and I drink coffee and talk while Maya chats with her friends (her favorite nurses- Mary, Brittany, and Denise).

This morning she was strong and calm through the entire port accessing process and only cried once it was over; maybe the anticipation of it all was just too much to let go without a few alligator tears. She quickly recovered though when Mary let her help hold the blood sample tubes. .. she happily announced, “that’s my blood!”

And now we wait for the counts, hopeful as always for an ANC over 1000 and no surprises.

Warmest of thoughts for all of you — good health and strength for all who love and are loved.
Thank you.

May 16, 2016 10:59pm (Sara)

It’s a very odd thing to realize that, I think, Maya’s hair is sort of growing back. It is definitely thinner than it was 3 months ago but since that first week of Consolidation (the one infusion of vincristine) she really hasn’t lost any more hair. In fact I don’t really even see an abundance in her comb like I was seeing last month.

I think it is odd because it’s confusing; we have been told hair loss is inevitable. I guess I just thought it would slowly fall out and one day realize that it’s gone. I wasn’t expecting this period of growth among all the chemo. I think of this with two hearts. One heart is grateful. I’m happy to be able to braid her hair still. I am happy to be able to put a sweet clip in her hair still. I am happy to see her curls. I am grateful because it has given me the opportunity to reflect on the idea that my soul, too, can grow among the darkness. The dragon, yet again, teaches me to be strong, find peace, and prevail.

The other heart is sad. This halt in hair loss makes me feel eager, impatient, and sad. Part of me feels like “let’s just get it over already”. I wish we could all just take the loss, cope, move on, heal, then grow again when it’s able. I know it’s just hair but it is a change that I believe we will all need to get used to. This is the selfish part of me, I know. There is also the issue of her beginning to deny that her hair will fall out now. I feel like she might think we have been tricking her. I’m not really sure how to help her cope and accept something so abstract as this. She’s smart, even “advanced”, but she is still three.

I got to see Maya’s bestie, Laeta, while dropping off some hand me downs this week. It was so nice to see her and give her mommy a hug. Laeta was far more “chatty” than I remember. It was darling and made me miss her for Maya. Laeta is growing up to be such a beautiful little girl and now she has a beautiful head of long dark hair. It’s weird, but I definitely notice three year old girls’ hair way more now that my little girl’s hair is falling out (or supposed to be). I just feel like their baby hair blooms to little girl hair so quickly! Maya never had all that much hair – certainly not like some babies I know (even Lincoln has way more hair than she did at 15 months). But I do know Maya’s was getting more thick and darkening just 3 months ago. Perhaps this extra three year old hair growth has counter acted the loss for a time. I do get an ever so slight ting of sadness when I think of the fact that I won’t ever know what Maya’s hair WOULD look like if it had the opportunity to make a full bloom. At least not when she’s three.

Hair is so superficial when it comes down to importance. Maya will accept her new look of “no hair don’t care” with ease. I know she will. I know everyone will still love her when they see her. She will still get snuggles from her family and friends as if she was normal and since Lincoln will witness the change, he’ll accept her no matter what. Her friends might need some time to adjust but they will accept her again too. Even strangers will try to hold their gaze (and likely their tongue) when they see the iconic bald little girl. Maya has very little invested in her personal image at this point. She isn’t the terminal teenage girl who is losing control of every part of her mind, body, spirit. Having experienced the observation of such a loss…this is easier for me to accept personally.

Motherly assessment: the dragon is flying. She is capable of anything if only her mommy and daddy could LET IT GO! Not knowing her lab values is probably contributing to some hypertension but…this too shall pass…doesn’t it? This week is just a usual week in the Morrison home. I’m working a few days and Scotty is doing what he does best…rocking it some how.

The picture of Maya in the purple dragon cape is of her holding her new back yard buddy the Rolly Polly named “Attitude”. This child.

We can’t imagine what this journey would look like without all of the support we have. Please know that there have times when I have actually felt your prayers, thoughts, light, and love…and I have truly needed them. Thank You.

Love is Life.

May 13, 2016 1:38am (Sara)

When I was a child we had a tree house. It wasn’t really in a tree but there was a tree within reach. My grandfather helped my dad start this two story tree house (maybe it was more of a tree adjacent fort) before he got sick. He ultimately lost a battle to cancer and the tree fort stood as it was. We loved it. One day in this tree fort my big brother grabbed a branch and swung like Tarzan. I couldn’t believe it and it was awesome. It was so awesome until the branch snapped just as he was in the up swing. He came crashing down and landed flat onto his back from what seemed like 2 stories. I frantically climbed down the ladder to his side. Shaun couldn’t breathe. Shaun! Breathe! Just breathe! Shaun just take a breath! He was gasping for air that he couldn’t reach. There was nothing I knew to do so I screamed for my mom. I screamed while I watched my brother gasp. He ultimately caught up to his breath and was fine after a while but I’ll never forget his look of fear. I will never forget my fear struck feeling of helplessness.

Three months ago today we were floored. We got a hit so hard that the wind was knocked out of our lungs. It was a hit that I thought would fundamentally change my family forever. It was something that I knew so little about that I didn’t know we’d ever smile, laugh, or even grow as a family again. Yet…after the biggest blindside blow of my life, after a fall from two stories and landing on my back not able to catch my breath, here we are. 3 months later and I can say: today was a good day.

Maya had round 3 of 5 double chemo infusions today. Until approximately 2 pm today i had absolutely NO idea what her blood would tell us. This fluctuating of ANC is seriously stressful…to the annoying point! The virus that Maya (as well as most of the county from what I hear) is fighting in conjunction with chemo depleted her immunity. She still has a bit of a runny nose but for the most part she is doing great.

Grandma Bella (my Moma) came with us today. Maya was able to introduce her Grandma to her new friends at the clinic. It is truly amazing that she loves going there so much. I know I shouldn’t be surprised since she is such a social butterfly and has this natural affinity to entertain, interact with, and enjoy humanity. But she constantly surprises me. It’s part of her that reminds me of me and I ache to think of how I’d feel being so isolated for so much time. We had labs drawn and then we got to go eat lunch.

Fantastic news! ANC 1450. We were able to move up to the escalated dose of methotrexate in addition to the vincristine. That sounds so weird to be “stoked” for chemo but…well 50 years of research and a 90 % cure rate isn’t something we’d like to mess with. The doctor says “she looks great”…and I would agree.

She is back down to just over 36lbs (at diagnosis she was 31 and gained 11lbs in 3 weeks!) and her cheeks are definitely looking more like herself. Her belly looks great too…maybe just slightly like a person who gained 30% of their body weight in 3 weeks then lost it very quickly. Her appetite is definitely back to normal and I have to remind myself that toddlers and preschoolers have really frustrating appetites sometimes! The mommy in me gets nervous when she doesn’t eat much but the dietitian in me has to just watch the trends of her eating habits. So far she is fine.

Today was a long day but it ended well. She fell asleep in the car on our way home for a very late nap. We ate tacos with out her but she woke up to play and eat later. We snuggled on the couch and laughed. We watched videos of us in Hawaii on Grandma Bella’s phone and talked with Siri the iPhone. At 8:30pm we asked “Siri, is it bedtime?” Siri replied “that is a very interesting question, Margaret.” Maya was silent for a solid 15 seconds at which point she said “weeeeellll….I guess this is Margaret’s phone.” ha! Yes child. It Is Margaret’s phone (aka Grandma Bella). And it is time for bed. Nevertheless, the humor, intelligence, and deductive reasoning this child holds is incredible. I laughed so hard.

Lincoln is good too. I don’t write much about him not because he isn’t a very big part of this journey but most of the people following my little family ask for communication about Maya. Lincoln is amazingly funny. His sense of humor is vast even with his limited words. He is such a strong yet gentle giant for Maya to lean on when she has fears or frustrations. They are both so isolated and while he does not have to endure the pain and fear of accessing Buddha buttons, arm pokeys, strange doctors, and side effects of chemo…he is very much a victim of cancer and its fall out. He is missing out on many experiences that he would typically have. I can’t wait to setup a play set since I know he’ll love the swings. He’d steal hearts in the Bumbles room with Miss Sally but I doubt that will happen. He has one friend so far – Liam – and has been isolated even from him for a time. All this yet, flying right along Maya the Dragon is my handsome, strong, leading dragon Lincoln. He lights the way for us all especially when Maya may be flying slower. He does wonders for all of our souls and I am so grateful for him (even if he has some pretty shitty sleep habits).

This family is good. We are all good. Scott is working hard and balancing more than I can even fathom…yet somehow making it look easy. I am grateful for my mom being her and helping so much. It is nice to have so much support.

Tomorrow Lincoln has his 15 month wellness check with Dr. Papez. It was at his 12 month that we hijacked his appointment with our concerns for Maya’s health. I haven’t see Dr. P since and while we aren’t really at the “hugging” level of friendship… I really look forward to giving her a big hug to say thank you.

Love is life.

May 8, 2016 3:14pm (Sara)

We just returned home from Renown. Maya was discharged this afternoon once all the paper work was complete and she was de-accessed. It was becoming increasingly difficult keeping the Dragon with in the walls of the hospital room. It quickly became impossible. Scott and I are SO thankful for the wonderful and patient staff at Renown’s Pediatric unit. They were all very caring and while their specialty is not oncology…we certainly felt their compassion and capacity. After the required 48 hours that Maya’s blood cultures needed to incubate, we were released with negative cultures, afebrile (without a fever) for 36 hours, and her ANC was over 200.

Maya’s ANC got well above 500 yesterday but it was depleted again to day – because she did not have a fever and her blood is negative of any bacteria, we just got home.
Maya is now making scones with Grandma Bella (this was planned for this mornings breakfast before Maya was admitted) and we are planning to make homemade pasta tonight. While it certainly wasn’t the most comfortable and calm Mother’s Day weekend…and this Moma missed the Derby (boo!)…it was strong. Maya is strong. Maya continues to hold this mass amount of strength and perseverance. We will have to take precautions until her ANC is back to 750-1000 but we are hoping that can happen again soon.
Motherly Assessment:
WBC: 2.1
Hgb: 10.5
Platelets: 300
ANC: 240
Maya’s appetite is a wee bit concerning but we are hope to entice her with more home cooked and familiar foods. We are happy to find out that there is no bacterial infection and that the fever was just viral. Needless to say…Maya was admitted to the hospital for….the sniffles. Ugh. The new normal.

Motherhood is incredible. Our babies are miraculous. Our Mothers are fierce. Motherhood has proven to be more challenging than I ever expected yet it continues to surprise me with the amazement. Even with the anxiety, fear, pain, sadness, challenges, uncertainty, unknown…the amazement, laughter, strength, hope, growth, happiness, journeys, and Love are more than worth it.

The Dragon awakens. She has healed her nicked wing and she grows stronger than ever before. She was revitalized with this last weekend and has recruited more warriors of Love. With every RN, CNA, housekeeper, Doctor, Resident, and food service worker she has gained more prayers and strength. She is loved. We are loved. She has taken flight again and will be soaring in the skies…keep your eyes open for her.

May 7, 2016 12:48am (Scott)

It was just mid February, but it seems like a year since I spent 12 nights in a hospital room caring for our little dragon. She and I began referring to our special club as The Night Shift. Well here we are again. Maya and I are settled in a very nice room at Renown and feeling like it’s our home away from home. The staff is great, the facility is modern and spacious. We have no complaints save the obvious.

To review, Thursday night Maya started to show signs of what is probably a cold. By 2am she was running a temp over 100, and by 3am she was at 101. These are temps taken under her arm, and 100.4 is a firm threshold that triggers standard protocols. We arrived at Renown’s Children’s ER about 4am, and the investigation began.

Tests for influenza and RSV were negative. Broad spectrum IV antibiotics were started as a precaution, and blood samples were taken to monitor for bacteria growth and to determine the all important ANC.

Maya’s ANC was quite low–290. We’re 4 days out from her last dose of chemo and 14 days out from the previous one, so there’s reason to expect her counts might be suppressed. The presence of a virus will also lower counts, so I don’t think anyone was terribly surprised. The disappointing thing is that fever combined with an ANC below 500 adds up to a minimum 48 hour stay in the hospital. In order to be cleared to go home, she needs to be free of fever for 24 hours, her blood culture must show no evidence of bacterial infection for 48 hours, and her ANC must be at least 200 consistently and must show an upward trend–we don’t know yet if she was headed up or down through 290; we will know more in the morning with the next lab draw.

As usual, Maya has been a superstar today. Aside from a mid-grade meltdown about 11am, which could easily be explained by no sleep plus no breakfast plus strangers suctioning out her nose without full dragon consent, she’s been taking things in stride and finding the fun and adventure where she can. There are IV fluids and antibiotics administered through her port, her fever is being treated with Tylenol, and there’s the standard bowel care measures. Otherwise we’re just playing the waiting game to see what numbers will come up next time we spin the wheel. I really hope it’s not as random as that sounds, but uncertainty is unavoidable more often than not. 

There’s a good chance we’ll be here more than 48 hours (I wonder if that’s a good excuse for totally dropping the ball on Mother’s Day?), but there are activities to keep Maya busy, and we can have visitors. This is important because seeing new faces and hearing new voices helps to keep Maya energized and engaged (thanks to Uncle Butler for spending a few hours today and for delivering delicious smoothies!)

The dragon is sleeping soundly now, and I think I’d better do the same while I can. Thank you all for the caring comments and prayers. We are wishing you all good health and strength as well.

May 6, 2016 7:36am (Sara)

Oh how our lives have changed. Maya got a fever of 101. In any other world, we could just let it ride. I wouldn’t even have considered Tylenol until she was 102. But cancer…cancer made us drive to Renown’s ER for a low grade fever.

Here we are. We didn’t have to wait long in the waiting room and the room is nice and dark so Maya can hopefully rest a bit more. I know I could use some more rest. We’ll likely need labs to see what is going on. Fingers crossed her counts are high enough so we don’t have to spend two days here.

Timing is sometimes everything. We are so grateful for my mom who just came to town yesterday. She is at home with Lincoln so we know he is more comfortable than he would be while on this adventure.

I feel like I should be more scared or concerned but so far…its just a thing we are doing at 4 in the morning. I know this could be much worse.

She’s okay. Not super comfortable and her legs hurt but she is strong and calm. At least so far. We’ll see how she is with an access to her Buddha button.

Feeling the heat this morning. This adventure is a reminder of how fragile and yet fierce our dragon is…all at the same time. Her ability to balance emotions, fear, pain, and stress is remarkable.

We’ll update when we know a plan.

Love is life.

May 4, 2016 11:36pm (Scott)