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A New Year

January 4th, 2018         (Scott)

Maintenance is supposed to be the easy part. It’s described that way in comparison to the other phases of treatment. Things are supposed to be as close to normal as can be during these 18 months. But these are the things we are told by the people who haven’t lived the process day by day with a child who may or may not feel crummy and who may or may not have the vocabulary nor the confidence to tell us how things really are.

I wrote that about a year ago when Maya was just a few months into maintenance. It really is funny how some things change and some things don’t. Many of the issues we face one year later are different and most are much less severe. Maya’s constipation has been more manageable– though we’ve had sporadic issues and even gone to the nuclear option (Lactulose); her liver function has been consistently good since the inclusion of allopurinol. But many of the other concerns we have today are unchanged. We worry often about Maya’s hemoglobin level, her ANC being too low or too high, we worry about fevers and infections, and we worry that her biological experience of maintenance may be of lower quality because we’ve never been able to find the right balance of drugs to keep her neutrophil count in the right range. In the past few months she’s been everywhere from 200 to 4500.

On Tuesday the number was just over 2000. So, we continue to work toward the right balance of meds– a little more methotrexate each week, another quarter tab of 6mp (yes, quarter tab… ever try to cut an aspirin into quarters?). And maybe we’ll find that sweet spot that we sense is so close. Either way, April 21, 2018 is it– the meds stop… and whatever comes after that will start.

I realize that last bit sounds ominous, and there’s a part of me that is truly worried about it. I’m working on a way to think about the five years post-treatment that will take us to the real finish line– the one that reads, “CURED.” The best I have so far is that each day that passes, post-treatment, brings a slight reduction in the probability of relapse… each day will be just slightly less ominous than the one that came before.

But through all of this, before, during, after treatment there is Life. There is spirit in our little dragon, already strong and growing stronger as we go. There is family, there is learning, there is laughter, and there is Love. Sara and I struggle with strange and interesting schedules and dosages and symptoms, but more and more we simply struggle to raise two little humans as any parents would– the best we can at any given moment. With Maya just recently turned five and Lincoln almost three (though he claims he’s also going to be five in February), we are mainly occupied with the standard stuff– feed, wash, sleep, love, repeat… and then also, in the space between all that, try to plan a bit for the future.

This is our world of being a family. It was here when we started all this almost two years ago, it is here now, and it will continue beyond April 21st. This, I think, will be my bridge from treatment to non-treatment– my bridge from one day to the next if that’s what it takes. But it’s something I know I can count on in my heart, my partner, my family, my friends, and in my community. Soon enough we’ll celebrate a great milestone, but the truth is that milestone itself doesn’t matter a bit… it’s the people, watching that marker shrink into the distance, together carrying momentum and strength and good health and the dragon’s spirit ahead, which is the thing to celebrate.

Maya got her second-to-last lumbar puncture with chemo on Tuesday. She handled most everything well as usual– the access (i.e. needle to the chest) is still no big deal, but try to take those monitoring stickers off her ribs and you get to see all the dragon’s fire. Her labs looked fine that day– Hgb had come up bit since ten days earlier, ANC was still high but we’re all fighting viruses this time of year. We made some slight adjustments in meds and added in an antibiotic to treat an ongoing ear infection as well.

Because of the nasty stuff going around this time of year and the increased reports of flu in our area, we’ve decided to keep the kids out of school as much as possible for a few weeks. This is much harder on our schedules– not to mention the grandparents who we lean on so heavily (we do feed them pretty well every now and then– thank you, Bapas). We hope this will allow the kids to get over what they’re currently fighting and keep them from piling on anything new. Thankfully, Maya and Lincoln continue to be great playmates and best friends– they have their sibling spats, but more often they laugh and create and explore together.

Before I finish, I need to add that my wife, Sara, continues to get more and more awesome all the time. You may not know this, but she won ‘Wife of the Year’ for 2017, and she’s already the favorite for 2018! She threw one heck of a 40th birthday party for me, which included both go-cart racing and scotch (no, not at the same time). And she balances all the planning, amidst all the chaos, with grace and strength. She’s my muse and my best friend. 

Thank you all for your continued support. We wish you all the best year yet in 2018!

One Full Hand

December 15th, 2017      (Sara)

Five years ago today, I gave birth to The Dragon. When you ask Maya how old she is today, she will likely smile and lift her whole hand. She will hold it high with all her fingers spread out as wide as she can spread them. Today, she is one full hand. Last year on this day, I reminisced about Maya’s birth story (if you’d like, you can re-read it here). I would be happy to re-live that day over and over for the rest of my days. It was a beautiful (yet challenging) day. From the moment the dragon was born, she challenged us in ways we never knew were possible. She has proven to be an incredibly smart, strong, funny, happy, creative, inspiring, fierce, loving, empathetic, and magical little soul. I can’t imagine my life without her and while I wish I didn’t have to be part of the “cancer family club”….I am proud to be her mother. And proud to be her friend.

Today, and for many weeks as the eve of my child’s 5th birthday crept into reality, I have been ruminating the idea of having a 5 year old. I have many friends and family members with children that have all been 5 years old. I was once 5. Scott was once 5. My incredible 91 year old grandmother was once 5. I mention this because turning 5 years old, in this country, is a seemingly underrated milestone. One that when I was pregnant or even pondering having a child, seemed inevitable. We all turn 5 years old. That is unless, we don’t. Because I also, unfortunately, have friends (new and old) that have children that are 5 and others that are now pictures on the wall. Memories in their hearts. Souls that never made it to a whole hand. At least not in this world. Today I would like to pay tribute and respect to those souls that don’t make it to five.

I have been mourning for a friend I lost just after Thanksgiving. My little Dalia was only 7 months old (almost) and she wasn’t supposed to die. It was a terrible accident that led to her death and while she had a very complicated genetic condition, she was winning. I think that is the toughest piece of her story for me to heal from. She was doing well but things went sideways. Anyways, she touched me deeply and I have thought about and cried for her family every day since. In my line of work, I don’t typically lose children like this but it seems as though this year has been one of pain. I feel this cycle of pain and am ready for it to move on. Having the opportunity to meet, hold, love, and help children like Dalia and my little Wren make me a stronger and better human and mommy. I was told little Dalia’s service was the day we celebrate Maya’s 5th birthday. I felt guilty and sick to my stomach at the idea of having a party for my child when another mother is grieving her loss. But because I love Dalia, and her mother, I changed my mind and now feel unbelievably grateful to celebrate my child’s 5 year birthday. I take nothing for granted and am blessed to have known this family.

I want to share another story with you. A few years ago, well before Maya was diagnosed with cancer, I saw a video produced by a non-profit called LifeBouy. This company’s goal is to decrease the severity of illness due to insufficient hand washing. They help to educate (and offer soap and clean water) to countries and populations that are lacking. It is incredible how many children we lose because they can’t sufficiently wash their hands. This video affected me in a way that I can’t really explain. It is a beautiful video and a wonderful celebration. Please take 3 minutes to watch it when you can. It made me cry even before my child almost died (a few times) before the age of 5. But here we are. We made it to one full had. She made it. And she truly is thriving.  

I express all this pain to get it off my chest not to put the burden on you. I don’t want to share pain but sometimes I feel like if I talk about it, it will ease. I have been sad lately but still find time to smile. Our family has also been battling a really gnarly community virus. Scott and I were sick for weeks and the kids too. Maya is now on 10 days of antibiotics for bilateral ear infections. As soon as I think we are getting to the tail end of this bug, we get knocked down again. I’m not sure it is possible for me to wash my hands any more than I do…but I will try! The good news is that Maya’s numbers have been decent enough and she hasn’t had a fever (knock on wood).

The Dragon continues to fly high and never ceases to amaze Scott and I. She continues on all chemo medications at this time and is actually tolerating them well…I think. We had a wonderful weekend celebration for both Scott and Maya. Friends, family, fun, and SNOW (well at least in our living room)! It was a magical break and we all enjoyed some fun times. As we head into the Yuletide we honor this season and cycle of pain and coldness and are hopeful that the next year will bring more joy, more laughter, more light, more health, more happiness, more Love and more Life. Here’s to a One Full Hand of life and to many many many many hand fulls more. 
Love is Life.

Grateful

November 20, 2017      (Sara)

I naturally get prompted to write an update after I write a super long text message to a friend or family member about Maya’s status. There is some sort of threshold I cross that elicits communication with the most amazing support system. Plus, I am grateful. For so much I am grateful and this week seems like an appropriate time to express myself.

Two weeks ago we had yet another chemo clinic. We are in the middle of cycle 5 and while it wasn’t a lumbar puncture, Maya actually had a rough week. Her ANC was found to be pretty high for the 3rd time in a row (ANC of close to 3000) and while that doesn’t necessarily make her feel unwell, it always makes us nervous. Aside from a increase in 6mp, the week was comprised of the regular cocktail we give Maya to stave off the cancer. It continues to include a week of decadron (steroids twice daily), zantac (to help with stomach upset from decadron), allopurinol (to enable her to metabolize the 6mp), methotrexate, bactrim (to keep a specific pneumonia at bay), miralax (you all know why), CALM (magnesium), uhhhh…oh yeah and 6mp at a slightly increased dose.

Maya spent the week at school and it was a pleasant distraction for her but when she was able to come home and melt back into her usual state, her smiles were less consistent. I tend to blame the steroids and deep down know that she will come out of this fog but there is always some fear triggered. I get tense with the idea that she will get stuck there. I exhale each month when she is done with decadron. It is as though I have watched her stuck at the bottom of a pool struggling to breath. Then I see her plant her two feet to the ground, bend her knees and push up back up for air. I see the bubbles flowing from her nostrils the air fill her lungs as she inhales dramatically. Then I see the smile come back full force. This happened. Of course it did…but about day 4 of steroids I worried.

Since then, she has been great. We checked mid month labs today because we increased Maya’s 6mp two weeks ago. Today her ANC is 750. It is quite a drop for the almost 3000 two weeks ago but we are relieved to see her “in the zone” for now. I spoke with DrZ and he made me giggle with a comment that went like “why does your kid love roller coasters so much? Can’t she like the teacups?”. I had to reply with….she’s just not the “teacup kidda kid, doc.”

All of her other labs are great. Well as great as we can expect for our chemo kid. Hemoglobin 11.1, platelets at 248, white blood cells at 1.6. Her metabolic panel and electrolytes are beautiful. Though I know she could be continuing to drop, I am grateful for this news today. We will monitor for further suppression of her bone marrow and perhaps check again next week. Or not. All in all, this was welcome news for us today.

We will celebrate the Thanksgiving Holiday as a small group of family and friends like family. I will hold my glass high and state I am Thankful for so much. Today, I am especially grateful for the doctors in my life. The doctor I am blessed to call colleague; Dr Powell inspires me in ways that I will never forget. He treats those that work with him as friends and the families he helps as peers. His way with words is magical and I hope to have his grace one day when dealing with others one day. Thank you. I am grateful for the doctors that are caring for my grandmother, and parents, and family. I am so grateful and blessed to have the doctors and nurses that are caring for my children. Thank you all. I am grateful for the health of my family and friends. For the beautiful home I live in with the perfect little family. I am grateful for my dog, Pelei. I am grateful for my job. For my own health. My own strength. I am grateful I live where I live and that I can do what I do. I am grateful that I am surrounded by Love all most all of the time. Finally, I am grateful for the season’s change. While I hold on to this artificial blonde hair, bare feet, and aloha spirit…I welcome late fall and winter. For Spring Time will bring our next journey. Our road to Survivorship. 

I send Love, light and dragon’s breathe to those that are battling. Not just with cancer but with loss. My dear friends that have lost the unimaginable, I hurt for you and hope you find peace soon. Thank you all for your continued strength and love. We would not be as strong with out all of you.

Love is Life.
s

7th Inning Stretch

October 16, 2017     (Sara)

Over the last month, there have been some really great times followed by some really not-so-great times. And visa versa. Not just with this little family but pretty much the whole world, I suppose. I know that we live on this incredible sphere and we shouldn’t be surprised with cycles but man sometimes taking the good with the bad can be difficult. There are plenty of events that have proven life is tragic that I could write about this evening but I don’t think I have the expertise to do so. What I can write about though…is me.

I find it fascinating when I enter a deep and meaningful conversation with a friend, who is going through some intense struggle, with some sort of wisdom and insight…then end up coming out the other end of the conversation bawling because I needed to hear my exact words. Communication can be so serendipitous and altering that way. I found myself saying things like “when you feel anxious, try to change you mind” and “you have to forgive yourself for feeling this way…”. Those are just examples of the words that really helped me. But turns out, I had a whole conversation of really good advice. Who knew? But how can I not support myself the same way I do a friend? I used to be so in touch with my own body, mind, and spirit but have felt so disconnected for so many months now. I know this is typical. I know that when a family goes through trauma like ours has, that this sort of disconnect and anxiety can be expected. But I still don’t know why it takes me tears with a friend to listen to myself. 

I truly have the best support system and while my days have been a bit more heavy than light, I feel supported constantly. I feel supported by my friends, parents, husband, family, nurses, and even the doctors in our lives. Oh, and Pelei, our dog. She is my buddy, and gives me kisses more so now than ever in the past. I make that statement about support because I never want anyone to think I feel alone. I don’t. In my darkest hours, it is YOU that gets me through them. When I feel anxious or fearful, I think of all the people praying that I don’t feel anxious and fearful. You truly are the best people on this Earth. I’m fine. I really am. I told Megs and Gen that I’m waiting for this level of anxiety to feel normal. At this point it still feels uncomfortable but I don’t see it diminishing anytime soon…I guess I’ll still wait.  

As for Maya. She just came off of a 9 day bout of constipation. She had her quarterly spinal tap with intrathecal Methotrexate one week ago and since then has been a bit of a challenge. She went into the procedure with grace and woke up a….well a dragon. Poor Nurse Lauren got a front row seat to Maya’s Fury and at that moment completely understood why we call her Maya The dragon. When Maya is constipated, her behavior is extremely challenging. I don’t blame her. When I haven’t pooped for even just a day, I can be pretty grumpy. Her legs hurt quite a bit more than usual this month and I’m not sure if that is the extra activity that she has been doing at school or the chemo. I DO know that the chemo does not help Maya poop and that is a challenge I cannot wait to eradicate from our lives. The poor girl had more bowel care (laxatives and stimulants) than ever and she still just couldn’t….let it go. She would have (let it go) if there wasn’t the complete understanding and trauma of what her little butt hole would feel like during and after. Even as an adult it is hard to talk yourself into crapping out a rock and I just feel awful that I have to coach my 4 year old into doing exactly that. But she did it as I helped her.  And she’s okay now. We are all okay now.

Maya’s ANC is 2100. Of course this is too high, but she hasn’t been one to chill in the sweet spot. We will increase her oral methotrexate this week in hopes it will deplete some of her immunity without crashing her bone marrow. We’ll check labs again in one week. It isn’t ideal but at least she will get to return to school this week (after clearing all that bowel care she gave her). And even through the fits of dragon screams, tears, mean words, and sleepless nights…she sometimes seems very happy. At least I think. I’m always so impressed how she bounces back from weeks like these and turns into the happy-go-lucky kid I remember.

For Scott and I, the stress ebbs and flows. I admit if feels like it flows more than ebbs but we have each other and we take wins when we can. And we do find time to enjoy. I had a wonderful birthday weekend (at the end of September) with an outdoor movie night with the kids and an AMAZING Janet Jackson concert with my two best girls, Megan and Genessa. The next weekend, Scott and I flew to LA to root for our DODGERS in the playoffs. We flew into Burbank and 24 hours later flew home. It was short and so sweet to take home a WIN of our boys in blue. I have always been a fan of “life’s simple pleasures” but perhaps never as intensely as recently. 

We might have several more months of treatment but one day we will get to the 7th inning stretch. The break in the game when we’ll get to stand up, sing out, and root root root for the home team (us!). And we will then move on to the next inning. And then we will win. It is right around the corner…I can just feel it. I have to trust it is there.

Take care, stay safe, eat your veggies, and smile.
Love is Life. 

Here We Are

I have recently run into several people, whether it be at work, the store, the hair salon, or even a local fundraiser for a fellow community cancer family, that have asked about Maya. Some times the days go by and I don’t realize how long it has been since I have written an update…and I know I should. For both you and for me. Mostly because I know people want to know how The Dragon has been and what she might be up to. And also for me because I know it helps me to cope with all this. I have, yet again, found my self silent lately because I really just don’t have words to write. Certainly no beautiful and inspiring words.

But…it has been long enough that I will offer an update…or at least some words.

Nothing terrible has happened and we have, some how, stayed out of the PICU (knock on wood). The kids have been “grounded” in a sense to the home for a couple of weeks now and everyone is antsy but we carry on with our day to day relying on our amazing retired parents that make time to hang out with our wild kids so that I can continue to work a few days a week. We also rely on the invaluable friends that are family who will drop anything and everything for us if we have a last minute meeting or some random thing that pops up….if they are feeling 100%, of course. While we have missed (or will miss) some fun things, we made it to my best friend’s birthday dinner (Happy Birthday Megan!) and some other fun things. Come what may, we have managed our lives the best we can. And in my opinion, I find that remarkable.

So, as you may know, Maya (AKA FireFlash) spent a week at school before we had to pull her out. She then went back for two days after finding out her ANC was 900. The following week (last week) her ANC was 442. Out of school once again. It feels daunting to keep up with all this so to write an update with every “to and fro”…I just can’t.

Last week, when her ANC was 442, the protocol would have been to hold her chemo. We had just come off of a chemo hold so the doc was hesitant to hold again. I feel that I need to remind us all that the more chemo holds…the more chance of relapse. So we discussed a slightly lower dose of 6MP, the continuance of Methotrexate, allopurinol, and Decadron…and off we left the clinic. The doctor continues with the opinion that she is still highly sensitive to the 6mp and that this is not looking like relapse…and I hold on to that little nugget of information as tight as scales hold on to a fish.

A while back I asked the doc if we should just surrender to weekly lab checks but Jake (DrZ) was optimistic that we could likely manage with bi-weekly checks….hah, we all know how things change. Back to the clinic we went today (a week later). Maya, Lincoln and I made it to the clinic (both kids in medical masks and a cape because Maya can’t do anything that Linc doesn’t do…or wear…or say…or eat…or lick…or love). We got labs drawn and Maya got to show off her Strong and Calm skills as the 3/4 inch 22 gage needle gets stabbed into her chest with blood coming out of a noodle. Lincoln wasn’t scared. He watched with slight concern but held the trust that she was fine. At the end, he requested to help invert the tubes of warm blood for Denise to take to the lab. It was a nice outing. 

Usually Denise will call with the labs but I unusually got a text from Dr.Z that started out with “Maya is going to give me a heart attack”. It then went on to tell me how amazing her labs were perfect aside from her ANC of….2100. He said “we will discuss”. Oh my…this child. Oscillating between neutropenia and too high. I can’t keep up. We all expected her numbers to have depleted further since once we started the 6MP again she dropped to 442…then we kept going with the meds. Is it that she just got off a week of Decadron (the steroid that can artificially inflate her ANC)? Is it another virus? Is it some other random reason? We just don’t know. But yeah…heart attack….or at least some hypertension.

We will have a conversation with Dr. Z soon. Usually we would have spoken by this evening but I didn’t want to text him and since her ANC is high enough, I have chosen to return my kids to school with out asking. School and “why the hell does my kid keep doing this?” is really my only questions for him at this point. He did mentioned we will continue with the same dose of chemo but I thought I would give him a night to think about a plan. I honestly have no idea and reality is, he might not either.

What I do know is that he is saving our kid’s life….and way too many other kids’ lives too. It breaks my heat to know how many families are going through this nightmare. And for some, their nightmare never ends. Scott and I were able to go to the Shoe Tree Brewery’s fundraiser for Iliana Avila’s family yesterday. Iliana (she is 8) was recently diagnosed with a brain tumor and the prognosis and treatment sound (and feel) way too familiar to my best friend April’s diagnosis…and prognosis. I don’t think it is a glioblastoma but something that has her on her wish trip as soon as possible and her family at her side soaking in every moment and memory possible. So when thinking about our situation, it feels okay. We are okay and life isn’t all that bad. My dark hours in the night aren’t as dark as Iliana’s moma’s…at least I don’t imagine they are. But maybe I selfishly don’t want to image her’s. We have our children at home. And while Maya might not be the healthiest, our children get to live a life of a child. They are learning, eating, drawing, singing, dancing, laughing, and loving. And for that, I am grateful. So amazingly grateful.      

I am also grateful for My Love. More and more with each day. He is incredibly busy at work…and killin’ it on little sleep and more stress than I wish on an enemy. He makes me proud and while we are in our “thirty somethings”…and maybe closer to forty than thirty…he makes me love him deeper than ever.  I get butterflies thinking about the first days we met and how exciting it is to fall in love. Then I get this amazing sense of rapture as I experience the idea of how he is mine. And I am his. This life hasn’t been the easiest (and honestly, I don’t think any life is) but he makes me trust it is possible to find the easiness. He makes believe that we will find our beach again and those days of laughing while drinking coffee with no cares in the world still exist for us. I trust they do. And I trust we will get our Maya the Dragon there too.

Thank you again for the continued support. We don’t have an exact plan for now but my plan…is to let my kids go to school tomorrow. And hopefully the next day. And the next. And next.

Love is Life.
s

Back At Home

August 29th, 2017     (Scott)

We’re sorry for the delay in communication. Many of you know there were some surprises with labs on Monday, and while we try to avoid suspense, we just didn’t have the energy to write a post after that kind of day.

Maya is feeling fine, and most of her cell counts are very strong. The shock on Monday was that Maya’s ANC was 180. If anything, we were concerned that her ANC would be too high– in fact, just two weeks earlier it was 4500. It’s hard to say what the reasons are for such a swing, except that there are multiple reasons and we’ll probably never figure out exactly what they are.

Maya’s HGB was 11.1 and her platelets were almost 300 (both very strong). That would indicate (in my opinion) that we’re not overdoing the 6mp. Other common factors that would affect ANC include exposure to viruses– Linco and Maya both had recenly re-entered the world of preschool pathogens, so it seems likely this would be part of the answer.

With ANC under 200, we immediately removed both kids from the Child Development Center and have quickly re-established our ‘bubble’ at home. Aside from the worry and uncertainty with Maya’s numbers, keeping both kids out of school is the hardest thing to deal with. They both were embracing some real normalcy and were doing so great– making friends and having wonderful new adventures. The scheduling of childcare is a challenge too, but our A-team is always ready with Bapa Pat riding to the rescue at a moment’s notice… the kids are never mad about getting to spend the day with Bapa.

Maya is off chemo for at least a week as we wait for her ANC to recover. Since her other counts were good, it’s anybody’s guess what things will look like next Tuesday. Sara and I are thankful for many things– no need for transfusion and no sign of relapse are very high on the list.

We spent this past weekend visiting Nona in Sacramento. It was wonderful to see Nona Jeannie– the kids are absolutely crazy for her. We enjoyed great food and hospitality, and we took advantage of Nona’s beautiful backyard pool as well. On Saturday evening we were guests at the annual block party– more great food and some new friends too (see pics). Maya and Linco made fast friends with Marley and Maya (7 year old twins). In fact, their first play-date happened the same night, and the second one happened the next day! Marley, Maya, Evelyn, and Mike have a gorgeous home with a great pool and play area in the back– our kids thoroughly enjoyed every bit of the fun and friendship. Thank you all for your amazing hospitality– it was very nice getting to know you, and we hope to see you again soon. 

We will work toward stability and recovery this week and keep you all updated on Maya’s progress. With a little luck we will have the kids back in school in a couple weeks. Thank you all for your support and love.

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