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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.


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.