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Strong numbers May 23, 2016 3:21pm

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. ūüėČ

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.57436883cb16b4fc430ec98c

And now we wait… May 23, 2016 10:35am

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. 574325c6a689b4f806b247d5 574324d2ab28b94b67322ebe
Thank you.

Hair May 16, 2016 10:59pm

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. 573a97a3cb16b4571ce53430

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.

Three months ago May 13, 2016 1:38am

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 snapp57357686cb16b48c37e27b31ed 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.

The Sniffles May 8, 2016 3:14pm

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.

Timelines May 7, 2016 12:48am

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 Sh572d8091af3d7926039cd3caift. 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.¬†572d80a5ac7ee98b244dc967

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.

Feeling the heat. May 6, 2016 7:36am

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.

Stubbornness May 4, 2016 11:36pm

May 4, 2016 11:36pm (Scott)572adcedf02065764820c5b2

A typical weekday evening, and it’s time for a wholesome family dinner. The crock pot has been bubbling most of the afternoon, and the kitchen smells of curry, chicken, and rice. The kids are seated at the table — Lincoln in a high chair that keeps his one year old tendencies to explore and destroy at bay. Maya is in her booster chatting along about butterflies and ‘sharp tooth’ (from Land Before Time).

Plates are served as quickly as can be; Maya’s first, then the parents and Lincoln. We all finally sit down and take in a long, grateful breath. That’s when I look across the table and see the three year old emptying her water cup into her pink princess dinner plate and turning her fresh, carefully prepared meal into a murky, questionable soup.

I stand up, calmly envisioning the parent I want to be, and explain that’s unacceptable behavior while I pour excess water off her plate into the kitchen sink. I explain Mommy has worked hard to give us this nice dinner and you’ve treated it like a toy before you even tasted it. As I continue to express my disappointment, she begins tapping her bulbous little kid spoon on the table, which she knows makes me insane. I change my approach and threaten to take the spoon away. She raises it ever so slowly above her head, maintains eye contact with a purpose, and brings it ever so carefully down to the table for just one more tap.

The rest is history. She lost the spoon, and the food, then there was talking, debate, deals were made, food was consumed in smaller amounts than we’d like, and we moved on to the next stage of the crazy video game that is an evening with little kids.

In some fleeting moment of clarity amidst the relative chaos, I realized that, however contrary it is to my instincts, stubbornness might be a thing to be revered in children. Stubbornness is what drives us to find a better way, to overcome adversity in all forms despite long odds, and to keep pushing in spite of pain or exhaustion toward an unrelenting goal. Stubbornness leads us to explore the unknown despite our fears… in fact stubbornness may be the opposite of fear or at least such a critical component of courage that one would not exist without the other.

Stubbornness endures cold nights, meager portions, and the darkest of times. Every story of survival floats on the undercurrents of stubborn attitudes fueling an unwavering pursuit of faithful vision–the fact that we can survive is the very reason that we will. 572add1caf3d797e129c3b1a

At the table, in this moment of frustrated, attempted parenting, the thought that set me at ease is that we ought to be thankful that our children are stubborn. It’s a critical component of character. Maybe it’s not our role as parents to eliminate stubbornness from our kids (if that’s even possible). Maybe it is our role to shape it, to help our children develop some control over a force that may save their lives or help them save others.

I’m glad to know Maya is stubborn — even though it drives me nuts more often than not. But she has the raw materials to accomplish near whatever she chooses. Her parents are stubborn and we’re all blessed with a community surrounding us with stubbornness to spare –a community that would do near anything to provide support.

We’ve been doing as well as anyone could hope. This week brought us back to reality with a glimpse of just how quickly things can change. It was, I think, a small bump in the road, and I have faith we will be back up to cruising speed next week. Thank you for your comments, thoughts, and prayers.

A nicked wing May 3, 2016 1:21pm

May 3, 2016 1:21pm (Sara)

Well, Maya’s labs were good enough to move forward with treatment but…they were not good enough to increase the dose of methotrexate. This phase is supposed to have accelerated doses of the methotrexate in addition to the standing dose of¬†vincristine. The protocol for blood recovery and chemo goes as follows: ANC @ or above 750 will move forward with increased dose; 750-500 will give methotrexate at previous dose; <500 will wait 4 days to check again and take if from there. Maya’s ANC is now 611…so she got both infusions of vincristine and methotrexate though it was the same dose as 10 days prior.

I don’t know why this almost angers me. Its no one’s fault and I don’t really even know if it is “all that bad”. But I feel like she is so much more vulnerable now. She has had such good blood recovery in the past that I thought we nailed it and we’d be moving forward with no issues. The perfectionist in me doesn’t like set backs.¬†This is really only a minor set back but the voice in my head is questioning if this changes her “cure rate”. Since we see Dr. Salo before we find out labs we were not able to ask her questions about what this really means. We just know that she got the previous dose.

On a positive note, her liver function looks WAY better. In fact her ALT is down to 80 from 595 (normal is 45ish) and her AST and kidney function look great. When the RN told us we weren’t moving up with the methotrexate, I was asking myself which I’d rather hear “her low ANC” or “her diminished liver function”….I have decided that I’ll take the low ANC.

Seeing her low ANC definitely makes me more alert. The doctor mentioned (before seeing her labs) that it would be “uncommon” for her to not make counts with such a low dose of methotrexate. Ugh. Uncommon…I like it when she follows suit (when it comes to this journey). I just get too stressed and try not to freak out. But sometimes…I DO freak out. I have to remind myself of reality, even if we put her in a bubble…50% of the time B-ALL¬†kids are admitted to the hospital, its from their own bacteria and they can’t find a source. Mouth, GI, hands….whatever, kids are gross. Ugh. I’m really trying to stay positive but my heart breaks when thinking how things have changed and how they will continue to change.

We really wanted to take Maya to see tech rehearsal of 42nd street which opens this weekend. She loves tap. LOVES TAP! She loves tap and she loves Auntie Gen. Auntie Gen is tapping in 42nd street….I’m not sure that can compete with anything. But do we take her? She’s above 500…or at least she was 2 hours before chemo. Do we wait? I really have no idea. Maybe we can go to the pick up rehearsal next week.

I’m really not sure why my initial feeling is anger. But I’m mad. I’m mad at this whole situation sometimes. I want her to go to school and play with her friends. I want to take her to the show. I want to let her play at the park. I want Lincoln to start school and get the interaction that he needs. I want to know that next month when Scott’s siblings come that she will be able to see them and play with her new cousins. I want to let her go to dance class. I want her to feel good. I want the worst to be over.¬†I want to know that she isn’t fragile and that my happy, strong, funny, loving, smart, amazing little girl can play and giggle and laugh with no cares. That she¬†will be the same after all this. But I know we will all be different. We all have to¬†change. We all have to adapt. We all have to somehow find peace among this chaos.
WBC 2.3
Hgb: 10.7
Platelets: 399
ANC: 611 – time for precautions again.
She is feeling “okay”. Today there is much more resting than there has been. She has a little bit of a runny nose that we will monitor but her temp is stable.

Maya the dragon is adapting. Her wing was nicked but she is still flying. She may not be soaring as she was last month but she is still filled with fire and she is healing. Her strength and love helps me to cope and adapt with her. I am so thankful for our amazing support. Thank you.
Love is Life.

Appointment time May 2, 2016 11:46am

May 2, 2016 11:46am (Sara)

57278474f02065d3648b724bThis phase has had an interesting “feel” to it so far. It almost feels like we have been in the dark while at the same time we are seeing amazing spark and light. Not having lab work for over 10 days was a little more nerve wracking than we expected.

We are driving to the clinic as I write. Once Angela accesses Maya’s port they will immediately pull labs and we have to wait. Maya likes to help with the vials of blood. She’s actually pretty good at it. As we wait for lab results, we’ll see Dr. Salo for a “check up”…and I sure we’ll ask questions.

One question we have on the list is: “how many kids have to go to ER during this phase (interim maintenance 1)??” We don’t want to freak out if we don’t have to but, it just feels like we have no idea. The last labs we saw were good but an hour later she was infused with two chemo drugs. What does that do to her counts? Do they even know?

For the most part, Maya has been great. She has been on a couple of adventures and she has had a few great visitors. She even got to practice her massage technique on Jennifer. Jennifer is Maya’s personal occupational therapist and new found friend that came to visit and offer techniques (for Scott and I) to massage Maya’s abdomen. We are hoping to prevent (or relieve) any constipation that comes with this treatment.

Auntie Kerrie came for a visit too! It was so much fun to see how she lights up to have the people who love her around. The highlight for this past weekend was Auntie Gen’s birthday brunch at Auntie Megan and Uncle Adam’s. We got to spend almost the whole day playing with them and Liam. It was wonderful for the kids…and the adults. It’s amazing how my soul can get some respite with hanging with my besties.

All this being said – we have no idea if any of these activities were appropriate. We really have no way to know (without an arm pokey) what her immunity is 5-7 days after an infusion. But what are we supposed to do? Just keep us all in isolation? We would do that if the chance of her getting sick is great. We would do what we have to do. Though it has been made clear its “when” and not “if” she goes to ER…our goal is to protect her from that as much as possible. So I guess that’s our main question this week.

She has been a little more pale than I like and the bruising….is it low platelet count or her clumsy self?

We are almost there.

Fingers crossed for strong blood counts and a calm soul.

Love is life.