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Scott and Sara Morrison

Back To School!

August 22nd, 2017    (Scott)

As of this week Maya is back to school, and the only way to really accurately describe her excitement level is, F#%$ING STOKED!

Maya has always loved school– she started before she was two years old in Miss Sally’s class, and the songs, routines, and relationships quickly became part of her identity. We’ve made many difficult changes during Maya’s treatment, and taking her out of school just as she turned 3 and joined the ‘Rockets’ was among the hardest– it’s just that important to her, so Sara and I are glad to be able to add that component back into her world.

Over the weekend, Maya got her first taste of back-to-school shopping which was off-the-charts awesome. She was allowed to pick out quite a few things on her own which led to some interesting results. She left the house excited about seeing the special “room at the store where they let you get naked” (dressing room), and she returned with an alter ego (see picture below)… that’s Fireflash… well actually it’s Fireflash Josephine Morrison. Anyway, Fireflash rocked that first day back at school like a superhero should… sparkly gold shoes and all.

Returning both kids to school is also unmeasureably stressful for us. The kids are handling everything fine– the normal sniffles (no fevers) are coming and going as they adapt to a more biologically diverse environment. For us, I think, it’s hard to break away from the safety and the routine of the home/bubble. As with any of the transitions we’ve faced along the way, we will adjust here too, and we will handle what challenges come our way together.

Maya’s most recent trip to the infusion center was just about a week ago. She hadn’t been for more than a month before that, so we prayed for ‘no surprises,’ just strong numbers. And for the most part that’s what we got– good counts for platelets and hemoglobin, clean liver function too. The one worry was that her ANC was higher than we’d like for Maintenance– around 4500 (we’re aiming at closer to 1000). There are a number of reasons this could have been high– fighting the new bugs that little brother brought home from school could do it, or the current dose of 6mp might be too low. Most likely it’s a combination of things, and I have to remind myself often that as we try to regulate and monitor her numbers, Maya is growing and changing before our eyes. She’s adding height and weight, her activity levels are increasing, and she’s going more and more places as we continue to expand outside the bubble. So, we are patient, and we take adjustments slowly– we’ll go back in a week for more labs and consider tinkering with dosages then. For now, we value the strength and energy our little dragon uses to re-engage at school, and we revel in the ease with which she adapts back to that environment.

Maya’s treatment end date remains at April 21, 2018– a date so near and yet so far. We have started to turn daydreams of celebrations into plans, so please keep your ears open for information on our ‘Aloha Chemo’ party (that’s the ‘goodbye’ aloha). We look forward to honoring Maya’s strength and the power of an exceptional community that has supported our little family through it all.
Good health and peace! Thank you.

Swinging

August 3, 2017     (Sara)

As a child, I thought there was something magical about swinging. It didn’t really matter what kind of swing. The school yard type swing set where best friends are born. A porch swing, with or with out cushions. A boat style swing that could fit 6 small children (or two adults). Or even just a piece of wood dangling from a rope attached to an old tree. Swinging has always been one of my favorite things to do. The summer I lived on Kauai, I found a swing set about 100 yards away from Kalapaki Bay. I think that is what my heaven is like.

It wasn’t until I was in my degree to become a dietitian when I found out that swinging is actually not magic. It’s science. Swinging acts like magic because it helps to stimulate the vestibular system. I remember a fascinating discussion on how actions like swinging actually bring “balance” into our bodies and help us not only feel more relaxed and soothed…it can make us happy. I want to be happy. I want everyone to be happy.

The past few weeks have been full of happiness. Maya and Lincoln have been wonderful. Maya has had more energy and spunk than I have seen in…well years! Between work days, the kids and I have spent time at the Lake and at the besties’ house with Aunty Megan and Liam the Great. We have had visitors and fun days with the Bapa’s and celebrations of the Grandma’s (both) birthdays. We have had ice cream and farmer’s market trips and even a day at the 3rd street splash pad. Aside from some necessary reminders, the occasional stress triggers (oh and Maya’s first sting by a wasp!), the last handful of weeks have looked very “normal”. It has been amazing.

Last week we finally put Lincoln in school. He is now officially a WNC Bumble Bee and spends a few days a week with Miss Sally and friends. His school is right on the WNC campus so daddy gets to pop his head in and check on him from time to time (just like he did when Maya was there). Linco has been great. He didn’t cry the first 2 drop offs but only said “Maya and Mommy left” when Scott asked how school was. Maya loved going to the school. She found her classroom right away and well…mommy had a little harder of a time. 

I hadn’t really prepared myself for the possibility of an intense emotional reaction. I prepared myself when we returned to the doctor’s office where she was diagnosed. I was very prepared when we returned to Oakland Children’s Hospital. I knew those places were going to bring up some memories. I truly had no idea that The Rocket’s Room would trigger  (what I can only imagine was..) an anxiety attack? I walked down the hall thinking “wow, I can’t believe Linco is finally in school”. We got to the end of the hallway where Maya’s old room was…I saw the hooks where we used to hang her jacket outside the room and sign that read “please wash your hands when you enter”. Right then I felt a little off…mostly in my belly. Maya said “this is my room right mommy?” as she opened the door. I said yes and just then felt a wave of sickness come over my body. It was as if I was getting sea sick and I gagged. I almost threw up right there in the hall way. I had to hold down my breakfast and then I started to shake. My knees almost broke beneath me but I kept up some how. Then the crying started. I couldn’t get myself to stop crying or shaking. I wanted to curl up in fetal position but we all know….that is not an option. I couldn’t keep looking in the room because all I saw was the ghost of a little girl…more pale than I ever want to see a child. Breathing heavily with red puffy eyes. And I saw Miss Chelsea’s face filled with fear as she said “her heart is beating so fast, Sara.” I knew she was sick. I had seen her getting more pale – I especially noticed it when I watched her in a recent ballet class but…this was the moment. The very moment I knew my baby girl was sick. Like really sick. That moment when she opened that door took me back to 18 months ago when I was more scared than I have ever been in my life.

Well anyways, after a few embarrassing moments of teachers telling me “Lincoln will be fine” and Maya asking me “why are you crying….again mommy”. I pulled it together to get through the rest of the drop off and headed out to lunch with Maya. It ended up being fine but I do hesitate to look down to The Rocket’s room from now on.

After a few days of school Lincoln has much more to say about it. It has been fun to see how the two of them (Maya and Lincoln) interact when he gets home. Whether Lincoln’s return is at noon time or after work, the two of them fall into play time without missing a beat. They have lots to say to each other and between the pretend play and the wrestling, they tell each other how their day has been. It is such a treat to watch. They typically spend their days loving each other any ways but it is still nice to see how they can get even closer. Makes me miss my brother that much more.

Lincoln has come home with stories and giggles. He also has come home with what we think is as cold. Hopefully he is just picking up new germs. So far no fever. Fingers crossed this is just something he’s gotta build immunity to and that Maya has some memory cells left to get through this without a trip to the lovely 5 star hotel complete with IV antibiotics. But we knew the risks.

We are hoping that Maya will be cleared for school soon too. She asks about the park all the time and it hurts my heart that she can’t go. I want to see my kids swing together again.

Today was a special day…mostly because Maya got to swing for the first time in 18 months. A sweet friend sponsored a CSA basket from Great Basin for us this summer (thank you again Peggy!). The pick up site is at a very wonderful (and nostalgic) house by our home and today Maya got to go with me to pick up our produce. The family we met today was wonderful and kind. The Aloha Spirit was palpable the moment Michelle opened the gate for us. The yard is beautiful and their porch has a swing. With misters! (it was like a million degrees this week so the misters were very welcome). Michelle and Ed fell in love with Maya (and visa versa). It was sweet. Well…turns out they have a tree swing on the side of the house. Michelle took Maya to swing and I once again believed in magic.

Her face was pure magic. No giggles right away but the look she gave me was priceless. Michelle pushed Maya and I watched her swing back and forth and back and forth. It was soothing to her and grounding to me. I think if we all did a little more swinging, the world would be a better place.

Thank you all for everything you do. Thank you for the love, the food, the prayers. The constant reminder that we are not alone. Thank you for listening still. Thank you for the cards. The money. The text messages telling us you are thinking of us. The gifts. Thank you for the magic.

Happy swinging. 
Love is Life.
s

Wee Bit Of Normal.

July 13, 2017     (Sara)

July has been a much better month for our little family. We just about felt like a normal family. We started the month off with a beautiful trip to Donner Lake. We stayed in a wonderful home on East Reed Avenue. The house was built on the side of the mountain and the lot next to us was being developed. It is incredible how they make those home on the cliff side and I was a little nervous seeing the diggers in the lot next to us. But watching Lincoln and Liam’s face while the crew worked was so worth the noise for a day. We spent most our days down on the East Beach (where they allow dogs) and spend our time kayaking, paddle boarding, hot tubin’, watching the lake, and relaxing. Aside from one “Baywatch style” rescue of my almost 13 year old dog, Pelei…it was quite an uneventful and perfect vacation. 

To sum up the rescue story: Scott had taken Maya out on the Kayak. Pelei doesn’t like our “pack” to be apart so she decided to swim after them. The distracted mommy (me!) was feeding Lincoln a snack and chatting with Megan, Genessa, and Bapa Pat. We saw a very ambitious dog swimming out in the lake about 200 yards out. When I couldn’t find my own dog I realized Pelei (the Poof) was that ambitious dog with her cute floppy ears. I then thought she might be in trouble soon since it had probably been at least 10 minutes of straight swimming. If she was the 6 year old swimmer she was I wouldn’t have worried. She would have found herself on “Party Island” and then come back when she wanted a carrot. But she’s not 6. She will be 13 this year and this was the first swim of the season! I freaked! I grabbed the paddle board (I should mention I am quite novice at paddle boarding) and paddled as fast as humanly possible. I screamed for her but quickly realized she couldn’t hear me and Scotty and Maya had no clue what was happening. I made it to her and a nice free water swimmer turned her my direction. I pulled her up on the board as she was starting to choke on the water…she was obviously getting tired. The Poof and I started our paddle in. You know the cool and calm looking dogs on paddle boards? That was totally…not us. She wouldn’t sit or lay down and insisted on almost flipping us over the whole ride back. But we made it. As soon as we got there I started to hyperventilate and cry. Apparently it was a bit more anxiety than I was up for that day. It took a few minutes for me to calm down but I did. And enjoyed the rest of the trip.
Maya and Lincoln swam and played. They giggled and explored. It was our first sleep over with our besties (Auntie Megan, Uncle Adam, and Liam) and we all had a wonderful time. Donner Lake was a wonderful place to spend our time and I cannot wait to return.
We are now back at work and trucking along. It is amazing what a week’s vacation can do to our work schedule. Maya continues to do well. We are crossing all of our fingers and toes and praying hard that Monday’s lab draw will confirm how she apparently feels. We know she can fly above some of the discomfort and the way she acts doesn’t always correlate with her immunity but…man this girl is doing great. She has energy, she is pooping, she is eating, she is exploring, and playing. We had some special friends (Michele, Laeta, and Silvia) over for dinner this week. Laeta is Maya’s bestie since she was a few months old. They haven’t seen each other since December….but they way they played you would have thought that was last week. My heart glows knowing she at least feels good. 
We head in to Renown for a lumbar puncture and chemo on Monday. We will check labs to make sure she’s good to go then she will get more IV chemo in addition to her quarterly intrathecal (spinal fluid) chemo. I know there is a chance her labs could be less than ideal. I know we could feel more uncertain come Monday. But for some reason I am hopeful. Even if she has tanked, at least she has had the opportunity to enjoy. We all have. And if she hasn’t tanked? We can start talking about Lincoln’s start of school. More outing for Maya. More security.
One last thing. The news seems to always hold uneasy headlines at the forefront. Politics, climate change, terrorism, and over all fear. Some people might have missed yesterday’s truly amazing developments. I will attach a link to The New York Times article about the F.D.A push for the approval of a leukemia treatment that can eliminate some of our very real fear.  A typical B-cell ALL kid has just about 95% chance that they won’t relapse. Maya’s prognosis is slightly unknown since she has needed allopurinol in order to metabolize the daily dose of 6MP (please see previous posts for more details on that). While our oncology team feels she might have that same chance, reality is, no one can be certain. We are in uncharted waters. This article is the outcome of great science and diligent support for human progress. As a person who lost her bestfriend to childhood cancer and now a mother to a cancer kid, it is with a light heart I share this news. We pray that Maya will never require this treatment since she already has a good prognosis but…if relapse creeps into our fate, it is wonderful to know there are more options than accepting the dismal prognosis we have been warned of. Developments in this arena are so important and I am proud of these scientists. I am so grateful for the people who have worked on this project, for those who have supported it in any way, and for the families that have made incredible sacrifices. Please take a look at what has been accomplished.
Love is Life.
https://www.nytimes.com/2017/07/12/health/fda-novartis-leukemia-gene-medicine.html

Rally Caps

June 30th, 2017      (Sara)

I have to offer this short but sweet update: So far today has been fantastic. This Momma got to go to a perfect Yoga class this morning (THANK YOU TINA!) then Maya and I headed to see Denise at the clinic for a lab draw. We started a new dose of 6MP 9 days ago (1/2 tab 6 days a week with Fridays off). No other changes with dosage of Methotrexate or Allopurinol but….I dare say we are closing in on the “sweet spot”.

Denise just called me with amazing news! IDEAL LABS!!!! FOR THE FIRST TIME IN FOREVER I AM SO SO SO SO SO SO SO SO SO SO SO SO SO SO STOKED!!!!
WBC: 2.2
Platelets: 265
Hemoglobin: 9.3
ANC……1060 ~ PERFECT FOR MY CHEMO KID!
Oh man. I’m not sure the all caps lettering is really letting my excitement show as much as I want it to.
We are headed out to Donner Lake for the week and we won’t have to check labs until July 17th before her next lumbar puncture…unless we get nervous, of course. I know we have regretfully taken a break from checking labs in the past but this time feels so much better. While her ANC is trending down since 9 days ago her ANC was 1950….and we don’t know exactly where that trend will stop…at least her hemoglobin has come up!!! I’m not a hem/onc expert but that seems very positive! I would have asked more questions but Dr.Z was very busy getting ready to leave town for his wedding! We are more confident that we know what to look for now. And least we hope.
I haven’t felt this relieved in a very long time. It feels good to feel hopeful again. Perhaps this next half of the year will prove to be a little less stressing. This year has been daunting. Not just for our family, but for many I know.
My heart hurts for those that have lost loved ones, their homes, their jobs, their peace. I hope we all can get stronger, healthier, and more loving. Thank you so much for your continued support and love. HAPPY FOURTH OF JULY! May your Fourth be filled with family, fun, laughs, BBQ, baseball, and maybe come rally caps when needed. I know our rally caps feel lucky this week.
Love is Life. 
s

Sunshine and Ice Cream

June 6th, 2017   (Scott)

I’m happy to say things have smoothed out quite a lot since the beginning of June. Though it makes us nervous for Maya to take any kind of break from her treatment, it is nice to see her numbers bounce back along with her energy and spirit.

I took Maya in for labs last week on Wednesday hoping to see dramatic improvement about 2 weeks out from when we stopped due to the stomach bug. All her numbers had come back as expected with hgb around 8.6, plt around 150, and ANC over 1900. We started back on the daily 6-mp (at a slightly reduced dose–half tab 6 days per week) and weekly methotrexate. This time we’re aiming to lightly suppress her marrow but keep things in a manageable range with ANC>700.
The strong numbers have allowed for more adventures of late. The kids went with Mom, Auntie Megs, and best buddy Liam to the lake last week, and we hit the farmer’s market for fresh berries and later on some ice cream.
The best part about Maya feeling good is that Lincoln gets to see his sister at ‘full power’ (or nearer full power anyway). With her imagination and energy both humming along, she’s a creative force shaping the world around them both as they explore the world and test the boundaries together. Linco is up for it all, playing the role of ‘wild-card sidekick’ and accelerating his own development as he goes. In fact, last night he posed his first true query about this world– one he might have pondered for a bit on his own before asking at bedtime, “Mommy, why do I toot out of my butt?”  (That’s mah boy.)
We hope this warm summer weather has found you all happy and well. Thank you for always caring. Thank you for the support, the love, the food (whether delivered to our house or our table on Saturday). I’ll leave you with an excerpt from a conversation I had with Maya tonight:
Maya: Daddy, I’ve got a bugger.
Me: Here’s a tissue.
Maya: Oh, Daddy, have you ever seen a blue bugger?
(No s___ this was like slurpee-blue)
Me: Um, no… Do you get blue buggers often?
Maya: Earlier today I did.
Me: Is there a reason your buggers are blue?
Maya: Maybe blue marker in my nose? I did have some marker on my finger.
Me: I see. 
Maya: Yep, that’s probably it. Good night Daddy.
HAPPY BIRTHDAY TO BAPA PAT AND UNCLE DREW AND MATTHEW RICHARD WEHR!

Into the Weeds….and Back Out.

June 14th, 2017       (Sara)

About two weeks ago, Scott suffered from the worst belly bug I’ve seen him endure as an adult (I have known him for 20 years and have been living with him for 11…I do have some experience with the man). For a solid three days he didn’t eat and needed to lay down for most of the day. His body ached badly and while he drank fluids as much as possible, things moved so quickly through his body, the poor guy could barely keep up. His temperature appeared to be “normal”  but he experienced night sweats and definitely felt warm to touch. I got a little nervous about day 4 because he just didn’t seem to be able to shake it off. Not typical for him. He was miserable and I felt terrible for him. He finally started to feel better on day 5. At least a little.

Of course we tried our best to keep the kids (especially Maya) away from the bug and healthy but reality is that we knew it was inevitable. The optimist and realist in me battle it out all the time: “it is inevitable she gets sick” “well maybe but it won’t be that bad”. I did think some of Scott’s sickness was from stress so I had hope that maybe the bug wouldn’t be as bad for the rest of us. I was a bit wrong.

Saturday my brother and his awesome girlfriend, Gina, arrived. It was magnificent to see Shaun again after two VERY LOOOONG years of not seeing him. And it was extremely exciting to finally meet Gina! We had about a day and a half of kicking it, hanging out, and movie nights. Since Maya’s ANC has been so low, we weren’t really able to go anywhere but…with such great company, I didn’t really want to be anywhere else.

Monday morning Maya woke a bit cranky. She didn’t feel too great so I took her temperature. 99.6d Fahrenheit. Hmmm. She is typically 97.4ish under the arm. I monitored for a bit but figured we were looking at a trip to (at least) the clinic. Shaun, Gina, and my dad took Lincoln to Virginia City for an old timey adventure and Maya and I went to get a round of IV antibiotics and fluids. As we waited patiently for labs to return, Maya seemed to have perked a bit with fluids and some tylenol. ANC came back at 500 right on the nose. In order to be able to go home with a fever, the ANC has to be 500 or higher. Leave it to Maya to run along the thresholds.

We went home and I got to snuggle Lincoln and we had another movie night. Maya wasn’t completely comfortable Monday night but we were able to give tylenol until the next morning. DrZ was firm that we don’t give Tylenol on Tuesday and that we monitor just as before. If a temp over 100.4, call him.

Maya’s temp crept up and as Scott wrote in the previous posts….we landed ourselves in the PICU. Maya had complained of belly upset but no vomiting or diarrhea right away. She just looked pretty awful. We hoped that some fluids and tylenol would be all that was needed to break the fever and get us outta there. Turns out the belly bug was a lot nastier than my optimism wanted to believe. Maya was really sick. And things got a bit scary.

After a few doses of zofran, Maya stopped throwing up the first night in the PICU. We had a great night nurse, Liz. She was kind, caring and detailed with her care for Maya. She helped us get through that first night with tylenol and zofran. And we thought we were on our way out.

The next day (Wednesday) we challenged Maya to take in more fluids orally and tried to pull back on her IV fluids. She did alright but still felt pretty bad. Also diarrhea kicked in hard core. We were, by far, the stinkiest room on the floor…and two days in a row, Maya blew up the room right before the medical team rounded. I couldn’t help but giggle. I mean…her timing!

I fell in love with Candice, our day nurse, at first “can I get you anything?”….”coffee??”. “I will make you some right now”. And she did. I know that doesn’t sound like what an ICU nurse should do…but she did it for me anyways. And I love her for it after a long night of hourly vitals and alarms. She tended to Maya during the day like she would her own child. I don’t know how some people do it but…there are some gifted and loving people out there. I wish I could send Candice a thank you bouquet for the time she spent with not just Maya…but me too. Thank you.

As much as I pushed fluids on my child, she just couldn’t keep up with her output. Her temperatures were variably high and she would have occasional low blood pressures. Needless to say…we stayed another night. At first I was disappointed because I thought we could handle her fevers and illness at home. But Dr. Zucker somehow – while trying to accommodate our family as much as possible – has found a way to read Maya like no one has in the past. Maya needed some extra time and while I wished so badly to be home visiting Shaun and Gina….Maya needed to be in the PICU. And I’m so glad we were there.

Scott stopped by for dinner (Thank you My Love) after a long day of Board of Regents meetings. I could tell he didn’t want to leave but Lincoln needed him at home. Maya was pretty out of it and didn’t touch any food. In fact… by Wednesday, it had been a solid 2 days since she had really eaten anything…not that I noticed…or was worried. Oh wait – I’m a dietitian. I definitely noticed. And I was definitely worried. The only reason I didn’t freak was I knew maintenance fluids that included glucose in addition to the electrolytes, were dripping into my child’s port.

After surrendering to the fact we were there for another day, Maya and I hunkered down and watched Tangled. I could feel the heat radiating from her body and the alarm for her respiratory rate was blinking red. Candice had said goodbye and we welcomed Liz back again. She took Maya’s temp….103.8.

She went to get some more tylenol but the computer stopped her since Maya had apparently had her “max dose” for the day. Tylenol can be quite toxic and she had been taking some every 4 hours for just about two days. The night PICU doctor spoke with DrZ and then we had a conversation.

Because Maya was maxed out on tylenol, we needed to consider other options. Basically those options included: 1) Treat with more tylenol but consider the toxic effects to her liver and possible liver injury. 2) Treat with Motrin (NSAIDS) even though they are contra-indicated (meaning not recommended) for chemo kids because they can make the platelets not function properly….this wouldn’t be that terrible of an option if her platelet count wasn’t 40 at the time. Or 3) not treat her fever and hope it breaks soon. Seems good right? Then the doctor had to remind me of the considerations of fever induced seizures. Maya had been very out of it the night before. She almost seemed to have a night terror…I was really nervous to see that again or a heaven forbid a seizure. I so badly wanted to consult with Scotty but the doctor didn’t have that much time….I went with option 3.

I asked the doctor where to place wet rags and he told me. So starting around 10pm I had wet rags on Maya’s groin, back of knees, underarms, neck, and head – and I shifted them every 20 minutes or so. They didn’t really need to be cool. Just room temperature. She would at times come down into 102’s. But she cruised in the 103’s for most of the night. At the 3am vital check she was 104.2 – her heart was beating in the 150’s and respiratory rate was close to 40. Also her blood pressure was 71/50 (too low). They quickly hung another bolus of fluids (in addition to the fluids already infusing). She felt awful and only wanted to snuggle. Of course I couldn’t snuggle her at 104 degrees….but I changed the towels once more and sat with my hand on her back. And all I could do was breath with her. I took all her fire breath away and I covered her with clouds and mist. I visualized her breath as a cool blue rather than her typical burning red. I prayed. In my own way I prayed….hard. I prayed hard.

As I was staring at the 156 beat per minute flashing red on the silenced alarm….I felt her take a giant sigh. She let out a huge breath and all of a sudden the 156 turned into a 122 bpm. While I still felt heat, she seemed more calm. I waited for return into the red but it never came. After 20 more minutes, I took a nap.

I missed the 4am vitals but at 5am she was 99.9. Then at 6am, 99.4. Then at 7am she was 98.6…and I started to cry. Candice was so sweet and she understood why. Maya on the other hand thinks I’m a cry baby.

We made it through that night into the next day. She felt better and while she still blew up the room just prior to rounds…she was at least up in bed coloring (and looking cute). The doctor wanted to challenge her again with fluids. This time we won.

She didn’t eat much but she drank. She also didn’t need any tylenol….well until just prior to discharge when she was found to be 102 once more. I think DrZ wanted to think twice but after he saw she was keeping her blood pressure up, he let us go home.

I got to snuggle Lincoln again and have a wonderful last night with Shaun and Gina. My moma (Grandma Bella) was also here by the time we got home. It made for a wonderful “homecoming” for both of us. Plus…Maya got to sleep at home without all the “noodles” hooked up to her and we all got to exhale a bit.

Since we have been home, her appetite has increased drastically. We went to Farmers Market, got an ice cream cone, saw our friend’s new hair studio and tootled around the capitol grounds. She has continued to feel better and while she appears to be quite skinny…she is a happy dragon.

Scott took her back to the clinic today. Chemo infusion was due last Wednesday but we held it. Again…we don’t want to kill her while trying to save her life.

Motherly Assessment: ANC 290, platelets 126, WCB 1.9, Hgb 9.3. Liver function ideal. Electrolytes ideal.

Her numbers came back with a seriously low ANC still. But I am pleasantly surprised she has held on to her red blood cell and platelets. She hasn’t pooped since her last watery stool on Friday but…are we really surprised? DrZ has decided to continue a hold on 6MP and the weekly methotrexate (she gets that on wednesdays). He did go ahead with IV vincristine and we started the 5 days of decadron. We will check labs again next week and see if 6MP should be resumed.

DrZ has also decided to delay Maya’s next lumbar puncture. It was scheduled for July 5th but will now be on July 17th. This is partly because he is being cautious and he wants her bone marrow to recover as much as possible…she has been pretty assaulted for a long time. This delay might lead to a delay in the last day of treatment. April 21st might not be our last day…but we have to be flexible. Maya hasn’t been a very typical A.L.L kid.

The delay in lumbar puncture is also because Dr. Zucker will be across the country getting married! We are SO happy for him. Even though this changes things slightly for Maya’s treatment, we are SO HAPPY that he will be taking some time for his family and to celebrate. He works very hard and is always accessible. He deserves some time dedicated to celebrating his wife and marriage. I’m sure the commitment he makes to his wife is a deep one….after all, if he can commit so intensely to a family he barely knows, I can only imagine the strength of commitment to a person he loves. Congratulations Dr. Zucker.

This last week has been quite a doozy on my stress level. I am looking forward to a more calm time…some time soon. Till then, cheers to modern medicine and to Love.

Thank you for your continued love, support, and shoulder to cry on.

Love is Life.

s

Fevers

June 7th, 2017    (Scott)

On Tuesday evening we took Maya up to Renown for an unscheduled check. She’d been toying with a fever since Monday morning, and we finally determined that things were moving in the wrong direction. 

The cause was most likely a belly bug that’s been going around.  It’s more like a belly monster causing aches, pains, fever, chills, vomiting, diarrhea and hanging around for 48 hours or more. Maya felt pretty awful when we arrived; her temperature and generally poor look led to her being admitted to the pediatric ICU about 5pm. Fluids and a prophylactic round of antibiotics were started. Her temperature and symptoms continued to worsen.
Wednesday was more of the same as Maya has continued to fight through this virus. Blood cultures and a chest x-ray have ruled out some other possible causes of the moderate/high, persistent fever which has ranged from 100.9 to 103.8.  Maya’s been given maximum doses of Tylenol to help keep her temperature down, but it hasn’t had as dramatic an effect as we’d like. IV fluids have kept her hydrated, and we’re hopeful that Thursday will bring some marked improvement in her energy and her symptoms.
Sara has been staying at the hospital, and she has been in contact with Dr. Zucker as he monitors things closely. We’re thankful for the resources and support that allow for one of us to be with Maya all the time. If we end up staying one more night I’ll find a way to take over– life in a tiny ICU room can quickly get pretty weird, and I think Lincoln might need to see his Mommy again here soon.
Lincoln has been very understanding to this point. This evening I told him I saw Mommy and Maya today. I told him Maya was still not feeling good and they’d have to stay another night. He thought about it a moment and said, “Linco no feel very good… need go hop-sit-al too.” Wherever his sister is, he wants to be.
Thank you all for your love and support. We’ll keep you updated as we can. Here’s hoping the next pics you see are of a smiling Maya back in her home.

Writing

May 25, 2017     (Sara)
I ran into a friend at the grocery store last night. This friend happens to be a psychologist…she asked me if writing these updates were as cathartic to write as they were for some of you to read. I have been asked this question in the past and for the entire first year of this adventure, I would have said yes, absolutely. Especially those first months. It was necessary for me to write and let it all out. It helped me to keep things in perspective, to find the positive side of all of this; it helped me to heal. Writing for YOU made it easier for ME to cope. Last night, in the grocery store, I answered the question “it is as cathartic…?” and I don’t know if its the magic of a psychologist or what but…I answered with the truth…it WAS cathartic. Very releasing. But now? I’m honestly just tired. I’m not tired of writing. I’m certainly not tired of disseminating information to those who are interested in Maya and our family. Keeping you informed is an important part of writing a public journal. After all, you keep us going. I am doubtlessly tired of feeling so intense. So intense. All of the time. The emotions I have felt over the last 16 months are enough. I’m good. I’ve had enough drama. I don’t want to have to talk about it. I don’t want to have to write about it. I don’t want to re-read some of this. I’m really not quite sure how I survived my teen age years since I was certain that I was living the most dramatic time of anyone’s life….who ever existed. Who would have thought it could get worse. Or better? Or maybe I just got better at accepting challenges….oh I don’t know.

Finding words that make sense and that offer some sort of insight into our lives have been difficult for me lately. Truly, at my core, I am happy but systemically I’m weary. And I’m tired. And that makes me feel weak. I know this does not make me weak but I would rather write about strengths and growth rather than trials and tribulations. I don’t like to complain because I know each person has their own battles. Who am I to think mine is any more daunting? My complaining does not do much for anyone and when I write about struggles…I feel like I’m complaining. Maybe you don’t read it the same way. But when I write, sometimes it feels broken.

For many years growing up, I wrote in my journal. I remember one of my first entries was as I turned 10. “today is my last day of being 9”. We were at Apple Hill and I think my Grandparents gave me that journal that day. I still have it. Actually, I still have all those that followed too. For many years I wrote about things that happened. And mostly I wrote about things that bothered me. I never wanted any one to read it. It contained my secrets. I’m not sure why I didn’t want anyone to read it. I don’t think it held much of anything other than the things I was sad about. After years of life, I have come to realize I mostly didn’t want people to know I was sad….like it was a character flaw. I found that I always wrote about dramatic issues too. Then one day a boyfriend broke into my Studio City apartment and read my journal. (Yeah, Dad…I know, he was crazy.) Well he read my journal and I was upset. So I stopped writing….as if it was the journal’s fault. After an adolescence and young adulthood of writing, I just stopped. I felt more violated that day than any day my car was broken into.
Then one day I got pregnant with Maya. And I decided I would start to write again only I would write about the great things in my life. For my children. I enjoy writing about the good things. And even now, I really just want to write about the good things all the time. My journal writing has not been as consistent as it once was….I blame the children. But I focused on writing good things.
Then Maya got diagnosed with Leukemia. And honestly, life has been great but circumstances are not. So writing in the journal is more demanding. I have to dig deeper and challenge myself to find the optimism and the beauty in life. On the surface, it is easy to see. If only my mind would stay on the surface.
Maya’s hemoglobin came back pretty low on Monday (7.1, transfusion is needed at 7) and an ANC of 70 (virtually no immunity). I have to constantly work on forgiving myself for not anticipating these low numbers. As a mother, I must have seen changes drastic enough to need a blood transfusion…but truth is I didn’t see it. I guessed we were in the 8’s or high 7’s but I was blinded with hope that she wasn’t that low. We held off 6MP (the oral chemo) for a short 2 day stint but chemo holds make us all nervous even when it is because she is neutropenic. Two days off and DrZ put us back on a 50% dose of 6MP. This is a 50% dose of what a typical ALL kid her height and weight would take.  
Today we went into check labs. We mostly checked because we resumed oral chemo and she was one 10th of a point away from needing a blood transfusion. And because she apparently flies high above any signs/symptoms blatant enough for us to be concerned.
Some of today’s labs were okay. Platelets 124. This is increased slightly from Monday and basically gives the indication her bone marrow is working. ANC 120. Still virtually zero but Scott’s optimism reports this is almost double in two days. Ugh. Hemoglobin 6.8 So…Maya got some packed red blood cells for lunch along with her mac’n’cheese and carrots compliments of Renown Children’s Hospital and Nevada tax payers. #Thankyou.
Getting blood leads to a very long day. DrZ wanted us to come in and get checked today then come back tomorrow if we needed blood but since we were there and Lincoln was taken care of, we went ahead and waited for the blood today. This is her second transfusion in 6 weeks. She has not shown any signs of “reaction” which would most likely occur during the transfusion but we still will monitor her for any rash, fever, pain, etc. Transfusion took about 4 hours once it was running and we were home by 4pm.
Maya is good. While I wasn’t able to see that she was so low…and she NEVER complains…it was amazing to see the pink flow back into her cheeks like the Wailua into the sea with each minute of the transfusion. Incredible. And inspiring. We are so amazingly grateful for donors. I wish I could write a thank you and send a bracelet to the person who’s blood we used today.
Lincoln is great. He’s growing so fast and such a little viking. My heart breaks for him to miss school again. I hate and that his experiences are at the liberty of cancer but…well he doesn’t really know what he is missing yet. I can’t tell if that is a good thing or a bad thing.
I’m good. I am frantically trying to find that work/life/cancer balance. Some weeks are better than others but my support system is as strong as a redwood. I’m missing movement and working out but I know it will return shortly. Also, after my Grocery Store Therapy Session (which should totally be “a thing”) with my psychologist friend – I’m thinking maybe a psychologist with expertise in trauma isn’t just something we should look into for Maya. I will probably need to make time for more of those therapy sessions too…one day.
 Pelei….oh shit did I feed you?….Okay now she’s good. Best dog in the world.
Scott…amazing. I’m really not sure how he does what he does but Scott is some sort of Super Man. He takes care of this family like its his job. He takes care of me like its his job. AND he is now the VICE PRESIDENT of Western Nevada College….his actual job. Thank you for some how figuring out how to do it all. And look amazing while doing it (check out this picture of Scott and Gov. Sandoval!). 
Okay. The next step is to check in next week sometime. We’ll check labs and see where we are. We anticipate she holds on to those donor red blood cells….at least we hope she does. We have resumed chemo but hopefully this transfusion gives us enough time to see if the 1/2 tab each day of 6MP is the right dose. If in a couple weeks she isn’t recovering enough to keep her ANC above 500…then we’ll decrease but we all agree that we don’t want to make too many changes. Patience is a virtue right? We can be patient. With enough wine….
Love is life.

Calibration Part II

May 23, 2017      (Scott)
Today was the 46th commencement ceremony for Western Nevada College– the tenth one I’ve attended in my eleven years with the college. The day was full of hope and recognition of accomplishments, with a theme centered on service to family, community, country. The speakers told stories of perseverance, dedication, and empathy and the need for such in the present as much as the future. I’m proud to be part of such a bold, determined, and lively institution that is equally focused on high standards and pushing the limits for students’ access to opportunities.
I’m happy to say my work environment matches well with the home version which is somehow even bolder, livelier, and as determined as you’d want fueled by four year old stubbornness and moderate chaos (e.g. Lincoln hitting whiffle balls in the living room wearing only a tutu). Our little dragon princess continues to persevere as the adults around her struggle to strike the right balance for the remainder of the maintenance phase (about 11 more months). Despite our patience and caution, we continue to experience it all by way of the roller coaster– numbers fall, hold meds, recovery, adjustment, grit teeth and repeat. 
Last week on Monday we took Maya in early for labs as Sara and I agreed she looked pale and had showed some suspect bruising. As we expected, her Hgb and platelets were a little low, but her ANC was 1510, likely pushed higher by her body’s reaction to a virus. The worrisome thing, though, is always the possibility of a downward trend. Today (one week later) we got new lab results that showed just that.
ANC 70
WBC 0.7
HGB 7.1
PLT 145
Recent experience indicates we should further reduce the 6mp dosage. The inclusion of allopurinol has just about totally solved Maya’s liver toxicity, but this combination of drugs is also known to dramatically increase the effects of 6mp, and her marrow still appears to be overly suppressed. In terms of treating the leukemia, over suppression is probably not a bad thing; however, the risk of infection goes up significantly with an ANC under 700. The threshold for blood transfusion is Hgb<7, so we’ll carefully watch and check labs again later in the week if necessary.
I look forward one day soon to writing a post entitled, Calibrated. But then again, this isn’t a timepiece we’re talking about. This is a growing, changing, adapting, ferocious little fire-breathing dragon-child, and while she may allow her parents a little more smooth sailing in the future (oh goodness, please), she’s exactly not the sort of thing that will tolerate being predicable for long.
Sara, my Love, I wish I could promise you fewer surprises going forward. But sadly I cannot. What I can promise, though, is that I will never quit. We got into this together, and that’s exactly how we’ll overcome.
We made plans again this week to start Lincoln at the WNC Child Development Center, and again it looks like we’ll put that on hold. Lincoln is so ready for new adventures– he’s ready to take the lead and bring his tales of triumph and woe back home to share with his sister. But for now he can wait a little longer. Our weekly schedules remain carefully balanced, teetering on the edge at times but always with the safety net of an ever-supportive army of family and friends. We thank you all for your dedication, perseverance, empathy, determination, and your liveliness. We wish you all a happy and healthy spring and summer– may we see you out ‘in the wild’ real soon.

Calibration

May 10th, 2017      (Sara)

Two weeks ago we started back on a 75% of the originally prescribed dose of 6mp. Actually, since we started back on tablets rather than a compounded solution, Maya is technically on a 71″ish” % dose (250mg 6mp) of what the typical ALL maintenance kid her size and weight is on (which is 350mg 6mp). A reminder that she is also on Allopurinol to help her metabolize the 6mp more efficiently for our goals of “mylosuppression” (bone marrow suppression) rather than the liver toxicity build up. Two weeks ago we started back on the increased dose even though we all (DrZ, Scott and I) think it is too high of a dose, the doc felt bound by protocol. We trust him and so two weeks ago we started a dose close to the one that wiped her out. Well. One week ago, Maya’s labs came back almost beautiful; while her hemoglobin continued to be 9.7 her ANC was 1010 and other numbers looked ideal. We were cautiously optimistic and made no changes.

Today we went for our monthly clinic visit and IV Vincristine. Maya got to see our super star nurses and other staff that she adores. I feel bad that I didn’t have the brain power to bring cookies for Nurses Week! They deserve far more than cookies… but I have learned during this experience that most nurses really like cookies. I will remember one day. Till then, I hope our nurses know that they mean the world to us and we wouldn’t be able to handle this without them. Our nurses help save Maya’s life while enriching her life. They offer support as well as independence and education at a time when she cannot go to school. Clinic visits ARE her school right now. The clinic IS her playground for now. And she gets new experiences each time because the nurses are able to surrender and trust her. Thank you. From the bottom of our hearts, Thank you.

Speaking of nurses…independence and education…Maya pulled her labs (practically on her own) today. Mary accessed her buddah button (aka port) but Maya helped with her flushes as well as pulled back the “waste”. Then she took the vials and pressed the “squishy part” into the needle and watched as the blood entered the vial. When Mary told her to pull it off, she did. Then she inverted it a few times just like the nurses do. I am so happy I actually caught it on video. I will post it on the front page. It is awesome.

The good news is that we are not still there at the clinic getting platelets or packed red blood cells for lunch. We are home and heading into nap time.

The uneasy news is that we are still flying through a bit of a storm.

While 3 data points are typically needed to determine a trend, today’s counts look to indicate yet another drop when compared to last week’s numbers. Again, we are on the increased dose and none of us were all that “shocked”…although no matter how well prepared I am or how much I expect something like this, the varying numbers make me queasy.
ANC: 710
WBC: 1
Platelets: 111
Hgb: 8.7

Liver function: perfect.

The WBC count of 1 made my stomach tight since a number that low could easily indicate a much lower ANC. Her neutrophils must just be thriving this week. Yay for that.

So what does this mean. DrZ is still thinking. Scott and I assume that he will be calling to let us know of a dose change – perhaps to 200mg or 225mg 6mp (57-64% of the original dose…perhaps lower now that she has finally lost her decadron/induction weight). I suppose the percentage really doesn’t matter to me aside from the fact that most “parent blogs” discuss “percent of the dose”…it’s all about getting the right amount of medicine in to do its job with out killing her. Since we are on 50mg tablets now, we can’t really get to a nice, clean percent like 75% or 60%. With a compounded solution, it is easier to administer 37.5mg each day for 75% dose but it also introduces the possibility that the solution isn’t completely mixed. Tablets eliminate some of that variability but also eliminates easily discussed calculations. None of this is “clean” or “easy”. It has sort of been messy from the beginning. After all…life is messy yeah?

We are grateful to have a doctor who listens. Who asks questions. Who might not know all the answers but some how finds the ones we need. And while he is rigid with some protocols, he is open to truly see Maya…not a typical ALL child. We are grateful that there are amazingly smart individuals researching the addition of Allopuriol to help with 6mp metabolite shifts. We are grateful for healthy livers. And for incredible feats in modern medicine. We are grateful for our nurses. We are grateful for dinners that friends make for our family. We are grateful for Grandparent’s and other family and friends that play with our kids and keep them happy. We are grateful for each other.

The calibration continues but we are hopeful. With each lab draw the perfect dose of 6mp feels closer. While the winds of the storm test the dragon’s flight, her momentum is consistently forward. She is strong. We are strong. Because of you…our family is strong. Thank you for your continued support and love.
Love is Life.