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Writing

May 25, 2017 Uncategorized
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 Uncategorized
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 10, 2017 Uncategorized 1 Comment

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.

Just Breathe

April 26, 2017 Uncategorized 1 Comment

April 26, 2017     (Sara)

Through out this journey, there have been times when I have had to remind myself to breathe. Just breathe, Sara. You have to breathe. I have held my breath more times than I would like to admit during this journey. And for the last two weeks…I think I have taken sips of air while holding all that I have in. Hoping. Praying. Wishing. Visualizing. Meditating. Holding on to the idea that my little girl is still in remission. I feel like I couldn’t really quite catch my breath.

Today we traveled to Dr. Zucker’s office for…what seems to have turned into the biggest “lab draw” or test this year. Last year had a few lab draws and diagnostics that were impressionable. Of course, the blood sample that Papez ordered that diagnosed Maya…and the results of her second bone marrow aspiration that indicated she was in remission. We had waited to hear if she was in remission and what risk level she was for what seemed like eternity. Those results were excruciating to wait for. Today’s lab draw seemed as terrifying as last year’s.

Last week’s labs indicated her ANC dropped further to 90 and her WBC increased WBC to 2.1. Dr. Zucker was kind and he physically looked at a blood smear to see if he could see any abnormalities. He called me back immediately and offered good news in that he did not see anything strange. We knew that 6mp takes a while to detox from the body so last week’s labs were terrifying but we were instructed to…well to not freak out yet.

Today we got to speak with Dr. Z even though I’m sure he was very busy and we were not scheduled to see him. We were just there for a Budda Button access with Denise. He spoke with us about possibilities and about options. He had not scheduled a bone marrow aspiration yet but that was a possibility depending on what today’s labs showed. If no recovery, we’d have to determine if she was still in remission. And we’d ALL start freaking out.

I’m unbelievably happy to say…we will not be needing a bone marrow aspiration this time. She appears to be in classic blood recovery mode and we will be resuming oral chemo tonight with Methotrexate. 6mp will resume as soon as we pick up the new prescription.

Motherly Assessment:
ANC 640
Platelets 390
Hemoglobin 9.4
WBC 3.5
These are numbers I never thought I would be so happy to see. While she is anemic at this point, RBC take a while to replete. She’s working hard on healing and I know she is well on her way. She continues to eat well, drink, and POOP. Stubbornness is the worst part as she most certainly associates moving her bowel’s with some pretty gnarly memories. We’ll work through this together and until we are healed from that…there is Mira Lax and CALM to the rescue.

The dragon appears to have been struck out of the sky. She hunkered down in her cave but is peeking out for a return to flight. Her armor is strong but even a dragon is vulnerable. She flies fiercely and flies high. Even with a hemoglobin of 5.7…she shows very little signs. She fights through discomfort and spits fire at weakness. We have been humbled and realize that while our strong dragon continues to win, we cannot let our guard down yet. What we can do is breathe. I work on this as much as possible and I hope today’s news helps those of you also holding your breath….exhale. Thank you. We love you. And Love is Life.

Easter Break

April 16, 2017 Uncategorized
April 16, 2017   (Scott)
A very happy Easter to you all. We hope you’re enjoying a bright and sunny Sunday with family and friends. 

On Wednesday morning we headed back to the infusion clinic for Maya’s quarterly LP and chemo. Things had gone smoothly over the past month– we had a terrific vacation to Arizona and were making final plans to get Lincoln into the WNC Child Development Center. Maya had been feeling good, and we were all starting to enjoy the stability, so Wednesday morning’s labs came as quite a shock.

The initial numbers were so low in WBC, Hgb, and platelets that the request was made for a recheck– super stat. A few minutes later, the numbers were confirmed: white cells at 0.7, platelets at 55, hemoglobin at 5.7, ANC 190. For comparison, the numbers we would expect to see are closer to (3.0, 300, 11, 1200). . . the hemoglobin result on Wednesday morning was even lower than when Maya was diagnosed. 
All this news would have been far less shocking had Maya shown any signs of being so low. In particular, her red cell count was in a dangerous range– the threshold for transfusion is 7.0, and she was at 5.7. The rest of the day was spent at the infusion center with extra consultations and ultimately the determination that we’d go ahead with her chemo infusion and lumbar puncture followed by a blood transfusion to stabilize her red cell count.
With Maya’s cell counts were down across the board, the most likely explanation is that we overshot her dose of 6-mp and we’ve over-suppressed her marrow. Of course the unavoidable parent fear-response is laser focused on relapse, but that’s not the most likely explanation at this point. (Numbers at diagnosis were similar in some areas, but her WBC count was 28).
We hope to see a better trend over the next few weeks with her off the 6-mp. Assuming that dosage was the cause, we’ll need to carefully reintroduce the drug and return to monitoring cell counts weekly until we’re more sure the stability is not an illusion.
The rest of the week was a swift return to extreme precautions. We haven’t seen an ANC under 200 in a very long time, so it will be a bit longer before Lincoln is introduced to the school. I suppose it’s a good thing he doesn’t know what he’s missing, but Sara and I agree he’s in need of some new challenges. . . maybe just a few more weeks.
Through it all (and amazingly), Maya has been feeling good, playing, creating, singing, and pushing limits. Kids are truly resilient–I can’t even imagine what a Hgb count of 5.7 would feel like, but I guarantee I wouldn’t be doing much of anything normally. We’ll check numbers again next week, but we won’t expect a recovery by then– the cumulative effects of the 6-mp will take about two weeks to clear, so we’ll be patient and positive– focused on Maya’s bone marrow functioning effectively and recovering as it has done each time since treatment began.
We thank you all for the continued support and understanding. So many people contribute in large and small ways that allow us to consistently make Maya’s health the number one priority in our lives. This week has been a major twist in our story, but we’ll continue to adjust and be vigilant. Together we’ll get past this and every challenge to come. 
Thank you, and happy Easter Everyone.

Dear Lincoln

April 1, 2017 Uncategorized 1 Comment

April 1, 2017     (Sara)

Dear Lincoln, tonight was a very different night. Tonight, I asked your father to put you to bed. I’ve never asked that of him. I have always wanted to be the one to settle you in and drift you off. For over two years we have been each other’s bedtime story.

But tonight, you are crying.  I’m crying.  I’m sad. You’re mad. You have been through so much change in your short life and I never wanted to say goodnight this way.  I wish I could nurse you and let you suckle for as long as you wish. I wish I could sooth you and let you snuggle against me and fall asleep as your brain and heart dance to…. “once upon a dream”.

I wish I could be everything for you. For always.

The World Health Organization says two years of nursing is best for baby and mother. I know why. I don’t need research articles to tell me why it’s good for us. I know because I’m your mommy. I have witnessed the reasons first hand and I am proud that we have acccomplished that journey.

As I write this I hear you cry for me and sing out to distract and soothe yourself. My heart is pounding because I never thought I would have to make this choice.

I remember telling you, when you were about 7 months old, that I’d let you make the choice. I’d nurse till you were ready to move on. I didn’t mean to lie. I just didn’t think you’d nurse this long. I thought you’d get too distracted.  When you were 12 months you started to show signs of distraction and I thought I’d be lucky to make it to 18 months. I didn’t think 24 months was a reality and now you are 26 months. When Maya got sick I think we both clung on even tighter and thought we’d never let go.  I wish we didn’t have to.

I have recently come to realize that you may not be the one that will choose to stop nursing. It’s a difficult  choice so I will take that burden from you.  It has been a very difficult decision and it has taken time. No matter when we stopped nursing,  I knew it was going to be hard but I certainly didn’t know it was going to be this emotional. Choosing to take comfort away from you and milk that I felt helped offer immunity to you (as well as Maya) is something I never wanted to choose. Perhaps it’s this difficult because you are likely my last child. After being pregnant or nursing for 5 consecutive years…the idea of my body sustaining only itself is a strange and somewhat lonesome concept.

I hear you fall asleep with your daddy and you might feel a little uneasy but you are safe. He loves you just as much as I do and I know that he would give anything for you. All he wants is your ease and your happiness. You are his world as much as you are mine and while he can’t offer milk…his Love will give you Life forever. It has for an eternity.

If I could,  I would give you everything.  I wish I could be everything you need. I was that once when you were born but I cannot be that forever. Just as your sister challenged me to be the best mother I can be…you have challenged me to be the best woman I can be. You two help to make me the best human I can possibly be.

I believe I am on a path…that WE are on a path that is dividing. We are not dividing because my Love for you is waning. It is because my love for your is growing stronger every day.

You are growing stronger. And just as YOU do not belong to me…I do not belong to you.

Life and motherhood doesn’t make it easy to understand our separation.  The conflicting hormones that are produced as a side effect of making milk to sustain life makes the choice to wean seem impossible. It makes the choice to wean feel unnatural.  Motherhood made me feel as though you (my children) are part of me but I have come to realize that Life is more important than the Ego or the Id. Life is more forgiving and more humble than that. Your father and I started our marriage knowing that we are stronger together than we ever would be apart. That was made very apparent early on in our relationship and while we tried for a long time…we tried very hard for a long time to ignore that…we ended up giving in to chemistry and accepted the affinity we had to one another. That union has created two forces that will challenge this Earth’s reality. You and Maya.

I know this separation is difficult and it has only just begun.  I will nurse you in the morning and you’ll feel better.  I will feel better.  But soon we will nurse less frequently and you’ll get distracted more easily.  You will get more independent and confident. And I will too. We will still snuggle and we will not lose a physical closeness…it will just change.  I will forgive myself for feeling like my confidence as a mother has been hiding behind my breastfeeding relationship with you and that you won’t “need” me any more.   I will move past the feeling that you only needed me for milk. I will make a transition to knowing that my Love for you is enough. I once heard, “If nothing ever changed, there would be no butterflies. “

You won’t remember these days or the snuggle times that we have shared… but I will never forget them. Thank you my little Love.  Love is Life, Goodnight.

Metamorphosis

March 25, 2017 Uncategorized

March 25, 2017 (Scott)

After last week’s solid lab results, we finally felt comfortable enough to hit the road for our first vacation in a while. On Monday evening we loaded the Armada with everything we’d need (and more) and headed out of town. Fifteen hours later we pulled into Uncle Chris and Auntie Amber’s driveway just outside Phoenix. The sunshine, warm temperatures, and backyard swimming pool have been welcome distractions– thank you Auntie and Uncle for letting us take over your house… I promise most of the damage isn’t permanent.

Already we’ve had two ‘pool days,’ seen a Dodgers spring training game, and visited a butterfly sanctuary. Sunday we’ll check out the zoo and hopefully sit by the pool a bit more before heading home.

Maya and Lincoln have been excited to go out and do some new things. The car rides have been pretty easy, and they’re both trying hard to sleep in their own beds. Maya has stayed in her bed each night aside from one bout of leg pain. Linco will sleep all night without trouble, but
unfortunately he likes everyone to be awake by 630am.

As always we’re cautiously optimistic that all systems are normal and our reasonable precautions will protect us as we’re away from home. The kids seem grateful for a new environment to explore with new characters and situations each day.

We are so very thankful for supportive family and friends, for new opportunities, and for the courage to embrace them all. We cherish these moments of fun, humor, warmth, carefree living; and we are mindful that there are always others who don’t have it so well. We pray for peace, strength, and good health for all those who struggle and for the caregivers who never quit.

Thank you.

In the Zone

March 15, 2017 Uncategorized

March 15th, 2017   (Scott)

ANC 1290 today! (Ideal range 750 – 1500).
All other lab results look great too.
We’re cautiously optimistic that this is the start of the easy maintenance phase we’ve heard so much about.
We hope you’re all well and a little extra lucky this week.

1550

March 8, 2017 Uncategorized 1 Comment
March 8, 2017     (Sara) 

Until recently, I had no idea that I could gravitate to the negative very easily. I don’t think it’s years on this Earth. I don’t think it’s jadedness. I don’t think it’s even the fact my kid was diagnosed with cancer one year ago. I think there might be times when my naturally honed optimism just needs a vacation. I’m always the first to smile. The first to see the positive. To laugh. I thrive on laughter as much as I do energy from food, nourishment from water, or vitamin D from the sun. I have a strong affinity to the wonderful and convivial parts of life and this world. Some of it comes from deep within my soul while a good part of it from my family. I was raised in a home where the echoes of memories are that of giggles that turned to tears of joy and gasps for air between bellows.

It’s not surprising that my optimism has come to something that resembles a strike. It feels taken advantage of. I have leaned on my optimism continuously for my entire life not really giving it the appreciation it deserves. My optimism has a face of a dragon but it is tired of holding me up. Its tired of keeping me going. Of keeping me strong and calm. My optimism appears to be weak… at least at this point and I shall just accept it for now. I have full faith that these last several months of my consistent reliance of my optimism have depleted it. Over the last few weeks I have attempted to pull my positivity from the darkness but I believe it needs a real rest. I need to give it some time to regain its strength and return to me with full force. I will respect that. And it will return.

Today we had labs. And while the numbers came back in a more positive range, I felt numb. The doctor said “do a happy dance” and I felt “meh”. Scott has a wonderful outlook on the numbers and when he asked me what my thoughts are…they were not positive. I am realistic that an ANC of 1550 is likely ideal at this point. We are due for chemo in one week and if she were to be 900 today she might be too low to give chemo next week. I get it. I’m just not super stoked. I’m not on the high that I would have thought I would be. We are on the right path. We are getting there. I just wish it didn’t have to take so long. 1550…that is 50 units above the range that keeps her prognosis as good as can be expected. 50 units to the best possible outcome. 50 units to the sweet spot…and some respite to my anxiety about relapse.

I am a strong believer in the Law of Attraction and while I consciously push any negative thoughts from my brain…I feel like I can’t keep up. Considering relapse is as threatening to me as pondering Space or the vast unknown. The unknown scares the crap out of me. And I’d rather not really think about it. But then it always pops up. Usually I’m protected by my optimism. I imagine my optimism looks something like Joy from Inside Out….but with pink hair. No green. Yeah green hair and bright blue eyes. And pink skin. But my optimism usually saves me from fear. I can always talk myself out of feeling bad. Unless my optimism is on a vacation. Then I need to go on vacation too.

Motherly assessment: ANC 1550 (oh child…could you not have made it to 1400?!?). The range we desire is 750-1500. That is when the risk of relapse is lowest. I don’t have the other numbers aside from knowing her platelets are good, her hemoglobin is good. At the point of communication with Dr. Zucker, her CMP (metabolic panel) wasn’t available yet but since I didn’t hear back, I’m assuming her liver function is good too. She is pooping like a champ. My mom recommended CALM – its a magnesium supplement and I think helps a lot. Though since we changed other things at the same time, its hard to know what is helping…but we’ll take it nonetheless.

Her energy. A+

I have told people…I can handle anything as long as she is feeling good. And she is. She wants to play, run, jump, ride bikes, go outside in the freezing blizzard, dance, do yoga, and breathe fire. This child of mine is good. She is SO GOOD.

Lincoln is also so good. He makes jokes and keeps us laughing like I could have never expected.

In case anyone is interested in Pelei…the great Poof. She’s also great. 12 ½ years old and still dreaming of playing ball and swimming in Tahoe.

We are all good. Optimism or not, we are good. Maya the dragon is fighting a hard fight and making it look easy. We are making friends and helping each other get through this. My optimism will return soon…I know it will…It has been a year and just needs to pull over for a break while running this incredibly long, hard, intense, marathon.

Thank you all. From the bottom of my heart, thank you.

Love is Life

Big and Small

March 2, 2017 Uncategorized
March 2, 2017    (Scott) 

One year and seventeen days since Maya’s diagnosis, and things have gotten easier and harder. Routine continues to creep in and then be pushed back out. Ideas are discussed –travel, school, opportunity– plans begin and then fade in the certainty and uncertainty.

The other night Maya said something that might have been profound– the truth is I was half listening, preoccupied with the momentum of bedtime. She said something like, “Daddy, sometimes it’s like we’re here and not here… like we feel good but also not good… we’re happy and we’re sad.” I wish I had thought to write it down because I think there was even more to it. Anyway, my mind kicked into gear just at the end– she seemed a little troubled with this, so I asked her if that made her feel nervous or scared. She said, “No. It’s exactly how I want it to be.”
I’m not sure what she meant– sorta like I know and I also don’t know. At least now that I finally took the time to write it down I have a shot at one day seeing the bigger picture.
I’m proud to say that I gave blood today– also I’m embarrassed to say it was for the first time ever. I’m not sure why I never gave before. I’m not really afraid of needles– probably just lazy. Maya has had two blood transfusions, and I’ve seen first hand what an army of fresh red cells can do to help a struggling body– color, energy, mental and physical stability can all head back toward normal in astonishing short order. Today the bag filled quicker than I expected, and I was done in under ten minutes. Funny that it took me borrowing Maya’s big courage to do such a small thing.
Maya’s labs were better but not yet the ‘good’ we’re looking for. Her liver function is outstanding and her bilirubin was down to .4, so it seems the toxicity we saw weeks ago is being managed with the allopurinol. Her ANC was 2400 which is down significantly from 4900 the previous week, but it’s still not in the range we want in maintenance (750-1500). We continue to ratchet up the dose of 6mp from 20% to 50% and now to 75% of the original protocol recommendation. As always there’s a chance we cross a line and crash her cell counts, so we begin another week with moderate to extreme precautions. No unnecessary trips out, no birthday parties, no parks, no school. Maya takes it in stride, but she knows there are limitations. She misses her cousins, her friends, and she misses being out in ‘the wild.’
This house could be a small place for Maya each day were it not for Lincoln. Together they can turn a living room into an entire ocean– complete with soundtrack inspired by Moana. In Lincoln’s world, Maya is the ultra super star– sometimes teammate, sometimes competition and always center of the solar system. Lincoln at two is just about as awesome as he could possibly be– like the mini caveman of our world: two word sentences, eat with hands, and when in doubt smash closest item on the floor.
There are many things we both know and don’t know about this journey. Uncertainty is the worst and also the constant. In a world of contradictions, though, there can be peace and strength, and it’s here because of your consistent love and support. I wrote some time ago that I don’t know what it would be like to go through this alone, but I imagine it would be awful. We’re so blessed to not know what that would be like. Thank you.