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Just over a year…

February 20, 2017 Uncategorized

February 20, 2017    (Sara)

It has been just over one year and yet I am still in awe of the amount of love, support, prayers, and overall lift we continue to get as a family. I think we thought the support would subside and that by a year into treatment we would…well I suppose I don’t remember what I thought a year later was going to look like. I was barely surviving a year ago. I haven’t returned to those early posts in a many months. I re-read them over the summer and into the fall when I needed to remind myself of where we had come from but now…I am nervous that the memory of where we have been will make me feel weak again.

Maya has changed. She isn’t the girl I imagined she would be at 4. She is bigger than she would be if she didn’t have this in her fate. She is also stronger. She is more nervous and fearful in some ways while more fierce and brave in others. She might cry out because I am in the other room while she is sleeping but she handles a 3/4 inch needle through her chest like a champ. She isn’t who I imagined she would be but…she is so much more. 
I am changed too. I am not as strong in some places nor as weak in others. I have never been a runner but have heard about the “runner’s second wind”. I think I’m there. Almost half way there and I’m feeling like I can make it. I feel like I have been running but that it is finally…finally becoming normal. Weekends while on decadron are challenging (she takes about 7 meds at meal time) but I just look at it like a hill during a marathon. I won’t lie. I day dream more than I should probably. And I probably drink more wine than I should too at times.
Thankfully I have Kaia FIT to help me work out some stress and feel strong but I can’t help but wander at times. More than I think I would had Maya not been diagnosed with cancer. I always wander to the sea. My heart has always taken me to the islands and while we cannot visit at this point…I can’t help but plan a trip. Interestingly enough, Moana comes out on Amazon.com tomorrow (almost half way through treatment). I’m not sure who is more excited. Maya…or me. The sailing and the imagery of the islands…the warmth in that movie make my soul happy. If I can’t be there physically, I might as well feel the trade winds via imagination.
A year ago we were giving PEG aspariginase for the first time (that is the chemo that needed high observation for allergy concerns). Thankfully that is over with. There have been several days and nights that I remember vividly and ones that I truly hope never have to revisit again. Then there are nights that I remember vividly that contain laughter and happiness. Even joy. I hope to always be the type of person who sees the good in life. Even my child’s cancer. Though I could be angry…and at times feel like I owe it to myself to be mad…I’m just happy that my kid is alive. A year ago we didn’t even know she was standard risk. We didn’t know much.
About one year ago, our Go Fund Me was filling with money that smacked me with so much love and support. The money didn’t have anything to do with it. It was just the acknowledgement. The regard for my family. I was in awe of the beauty humans are capable of. I was in awe of the beauty my friends and family were capable of. We have always known we were surrounded by amazing people but…I just we just didn’t know HOW amazing.
About a year ago I was drowning but was saved. I was saved by not just one…or a few…but many. SO MANY people pulled me from the darkness and saved me and my family. Again, the money had (and has) nothing to do with it. It was the pure love that we felt. And that saved us.
I know I have mentioned before but I must mention again – there were days that I found myself empty. Completely empty and dark. My mind was dark. I was once a girl who could meditate a fever down yet a year ago I couldn’t even surround my own child with golden healing light. I was sick too. You see we do not have a religion. Faith? yes but not necessarily a strong religion that we congregate with weekly. What we do have is a church that spreads beyond any walls of a building. That was proven to us time and time again starting about one year ago today.
Maya is good. We are all doing okay. In fact today Maya was great and Lincoln was..two. Maya helped with chores and we all went to Costco. We have absolutely NO IDEA what her ANC is right now but fingers crossed we did not expose her to anything crazy. The roller coaster has not yet come to a stop. Last week, on Wednesday, her ANC was 2900. This is a drastic change from the 520 the week before and certainly well above the 1500 we want it below. We increased the 6MP (the oral meds) by…uh…25%??? My math might be wrong…so who knows where she is at now.
What I do know is that I’m tired of missing out. I took her to a baby shower yesterday and while she isn’t “supposed to” play with a latex balloon…she did. For like 2 hours. She even brought it home and played with it for 45 seconds. Then the baby brother got a hold of it and it did as most latex balloons do…pop. Yet she loved every second. It has been just over a year since she played with a balloon and it made her so happy. And me SO happy. There were many people at the shower and she was pretty overwhelmed. But she could tell that most of them loved her (and me) and while she was more shy than normal, she enjoyed. It felt good. Almost like that “normal life” every one has teased at for maintenance.
So as for the dragon….I think she is sewing her garden. I know…Dragons eat meat, but maybe she is exploring other options. The dragon is grounded and focused. She is hesitant at times though knows she has the strength to fly. The dragon is working on many skill while tending to the Earth and what is supporting her. She is like the young Albatross learning to spread her wings while mom and dad sit at her side. Perhaps the mom and dad sit because of exhaustion. And that is okay. Part of nature right?
As I’m sure I said about one year ago – there are no words to express our gratitude. No poet could have the ability to share words that truly touch each and every one of you the way I wish one could. All and I can say is thank you. From the deepest parts of my soul – from the hearts I have owned in all of my lives prior – Thank you.
Love is life. 
s

Sometimes…

February 8, 2017 Uncategorized

February 8th, 2017  (Sara)

Sometimes I have a hard time finding words that I feel are worthy of my friends, family, and other support system’s time. I sometimes have a hard time finding words, or thoughts for that matter, that are even worthy of my own time. I get overwhelmed sometimes and know that I would just blubber over my words and thoughts in a presumably whiny and obscure way. I find this isn’t helpful for anyone…including myself. I rely on Scott’s strength, comfort, and ability to communicate when I cannot. I rely on my parent’s unwavering support and stamina. I rely on my friend’s and family’s text conversations to communicate. I also rely on the patience of you all. I take advantage of your commitment and allegiance as you wait and wonder what is going on. I don’t mean to leave anyone in the dark. I don’t mean to make anyone wonder. I just, at times, find myself silent. The last month has been more of a roller coaster than expected and while I usually at least have words to express anxiety or fear…this month I found myself silent. Inside and out.

Personally, I have felt as though I have  trudged through a swamp. I am not ignorant to the fact that I have not walked alone. I know very well that I have so many by my side – taking one step at a time right next to me. Picking me up when I trip and nudging me along the way…silently as well as physically. I should get a tattoo (and perhaps one day I will) that says…I am grateful. Because I am. And a lifetime of saying it will still not be enough. I could not do what I do and be who I am…be as strong as I am without everyone in my life. The ones that are near and the ones that are far. The ones I truly know and the ones I only virtually know. The ones that have an everyday role and the ones that are more unfamiliar. I have needed everyone. And I am grateful for you all.

Over the last two weeks we have taken great strides in Maya’s care. Two weeks ago Maya’s liver was still having a hard time clearing and detoxifying her body. We were under the impression that Maya would test positive for the genetic mutation (testing positive for TPMT would indicate an enzyme deficiency or abnormality – see Scott’s post from 1/26). She actually tested NEGATIVE. Interesting for sure. We appreciate Dr. Zucker’s choice to test the metabolites of 6MP prior to obtaining the enzyme genetic test since for some reason…she is not (or perhaps was not) metabolizing the 6MP appropriately. He could have waited to get the test and then chosen to test metabolites…or not. We are glad he did since those came back quicker and proved we needed to consider a change urgently.

We added the allopurinol and she has been doing quite well. Last week her labs came back with the lowest liver enzymes she has had since the beginning of treatment. Dr. Z mentioned her liver felt smaller and while her belly was still a little more…ummm….shall I say…pleasantly plump…than it typically is, she looked less “puffy”. Her bilirubin was creeping down into within normal limits and she overall felt better. Even her ANC was 1340 – ideal.

This week she has continued to feel good. We have been able to ease from the aggressive bowel care and have maintained a couple (to few) poops each day with miralax and prune juice. We traveled to Dr. Zucker’s today for a lab draw. The visit with Angela was a welcome reading session for Maya. She was ever so strong and calm and though her pleasantly plump little body has changed, Angela continues to access her with ease (at least she makes it look easy). I can’t remember the last time Maya cried at her buddah button access…I would need to look back into my Beads of Courage journal. After the visit, Scott and I returned to work and Maya returned to her day with Grandma Bella and Lincoln.

Dr. Zucker texted me around 1:30 today with the results of Maya’s labs: “ANC 520….” Then followed with: “ Everything else looks great. Will have to be careful this next week as we are toeing the line of too low and hold.”

So. Here I am. Still waiting for the “glorious Maintenance” to feel like “maintanence”. I suppose it might be right around the corner but I am afraid that I find myself needing a spotting scope (as Maya calls a telescope) to see the easy part. I’m really ready to get off this roller coaster any time. I’m ready for Maya and Linco to go to school. I’m ready to not worry. I’m ready to go to my friend’s Lularoe and Rodan & Fields parties. I’m ready to take my kids to the movies. I’m ready for playdates. I’m ready to see my children swing at the park. I’m ready for a few spring training baseball games in Arizona. I’m ready for a purse without hand sanis. I’m ready for a pony tail in my daughter’s hair. I’m ready for plane flights to Hawaii. I’m ready to move on from the feeling of “missing out” to the feeling of “fulfillment”. I’m ready when you are Universe.

This is a long road. We all know that. We knew that from the beginning. The marathon is almost a year in and I’m feeling my stamina starting to wane. My dad calculated that around St. Patrick’s day we will be approximately ½ way there. Half way to the end date of treatment. So we can start to heal. And truly move on.

Dr. Zucker has made some choices with Maya’s care that have made a great difference. He cannot honestly (and ethically) say that this new support and treatment with the lower dose of 6MP and addition of allopurinol will yield the previous prognosis of approximately 95% cure rate but…he has reason to believe we are still on a good path. As I have told others, we cannot kill her while trying to save her life so we just have to have faith this will work. Dr. Zucker has stepped into this dragon’s fight and become more than just a warrior. He has become a beacon of light that is now guiding us to our next realm and surrounds this family with faith that we can and will prevail once again. We are honored to have him on our team.

On a much lighter note….little Lincoln turned TWO yesterday. I cannot believe I no longer have a baby…though he still nurses like one at times. In hindsight, a pirate party might not have been the best idea (with an ANC of 520) but I sure am glad we did it. Everyone enjoyed and he felt special. I might have gone over board but I just feel he deserves to feel special too. On Friday we get to go see Dr. Papez for his 2 year appointment. I truly wish Maya’s ANC was high enough so I could bring her…to wash the pain of last year’s annual wellness check from our souls. Oh well. We will have to just see Dr. Papez out in the wild soon.

Thank you again. Love is Life.

Wild Type

January 26, 2017 Uncategorized

Jan 26, 2017 (Scott)

During times like these it’s astounding how much one can learn in a day. The daily drug intended to suppress Maya’s marrow and keep her ANC between 750 and 1500, 6-Mercaptopurine (6mp), is metabolized by Thiopurine methyltransferase (TPMT) resulting in two metabolites: 6MMP and 6TG. And that’s more than I’ve ever known about metabolism (you’re lucky Sara isn’t writing this post).

6TG is the good stuff–the product that does the suppressive work; 6MMP is a bi-product, benign in small enough quantity and usually ignored. Rarely, patients taking 6MP (for leukemia treatment or IBD) will show signs of hepatotoxicity (angry liver), and rarely this is caused by unique effects of a patient’s TPMT on 6MP. This can create an imbalance in the breakdown of 6MP resulting in low levels of 6TG and high levels (10 times higher than normal) of 6MMP. This means the ANC is not sufficiently suppressed, and there is a toxic level of 6MMP present in the blood. Last week Maya’s labs included a test for these metabolites, and they were significantly imbalanced.
Now a break from the science lesson… over the past 7 days, Maya has bounced back with authority. My new mindset on the care giver’s role is to recognize that healthy kids will gravitate toward being healthy, and chemo kids will gravitate toward complications–if we’re not extremely attentive. Bowel care, hydration, rest, good nutrition, and love are critical components of a successful therapy; balance and consistency are key. I’m happy to say over the past week as Maya has been off chemo, she has gravitated convincingly toward health and strength. Her energy level, mood, humor, color, appetite, and myriad bodily functions have returned to a welcome balance. She’s been the normal energetic 4 year old and more.  Though, she is unique in many ways… more on that later.
We spent the first part of Sunday shoveling snow and sledding in the side yard. Maya built a snow castle, threw snow balls, ran up the hill carrying her sled over and over, and never showed signs of slowing down until we were eating lunch hours later. Even then she didn’t need a nap and continued on through the day with her natural curiousness and creative energy flowing.
Since last Wednesday she’s steadily improved. It took her a couple days to clear the jaundice; she began sleeping better without nausea or hypoglycemic symptoms. Her constipation seems to be under control, though this requires an unsettling amount of miralax and colace each day… we do what it takes to avoid the recent struggles in that department.
Taking a week off from treatment to recover is a scary thing, but I still think we made the right decision. Maya’s recovery has been substantial, and there were no concerns with respect to her strength beginning phase 2 of maintenance today.
There were, however, still concerns about what exactly got us into trouble in the first place and what to do in order to safely continue treatment. Likely it’s a combination of things, but as I mentioned earlier Maya’s metabolites related to 6MP were way out of balance. We hoped for answers this morning, and I think we’re confident we’re on the right track.
The metabolite imbalance points to a rare genetic anomaly in the way TPMT (the thing that breaks down 6MP into 6MMP and 6TG) is produced or operates in the body. Most people have the TPMT ‘wild-type’ genotype; fewer have the heterozygous genotype, and even fewer have the homozygous genotype. Both the heterozygous and homozygous genotypes lead to increased to extreme sensitivity to 6MP, potentially overproducing metabolites causing hepatotoxcitity (too much 6MMP) or extreme myelosuppression (bone marrow suppression from too much 6TG) which can bottom out immunity and worse. We should know in a few weeks which genotype is Maya’s and take extreme care as we proceed.
The tactic to combat this and get back to a healthy balance is not on the standard protocol, but it is well known among pediatric oncologists. Case studies have been published in recent years indicating efficacy of introducing allopurinol in these rare cases to shift the metabolic pathway with TPMT away from 6MMP and toward 6TG. Since there is the possibility that Maya is extremely sensitive to these metabolites, and the point is to moderately suppress her ANC, we’ll start back with just 20% of the previous dose of 6MP. We’ll also check labs weekly until we find that comfortable balance for our rare, unique, extreme, amazingly strong little dragon.
This continues to be a very stressful time. Uncertainty is the worst. But we have a plan, and we’re as focused as ever. Maya is a unique little creature–more unique all the time it seems. We’ve seen over the past week that her strength remains, and her excitement for life has not been diminished.
Thank you all for your support, love, and understanding. May we all have the energy to strive for and achieve our balance.

Choices and Paths

January 18, 2017 Uncategorized

January 18th, 2017 (Scott)

For the first time in a while Maya had a solid night’s sleep that didn’t end with nausea and vomit at 6 am. She woke up feeling good having missed her first dose of oral chemo in 3 months. Her appetite remains strong, and her desire to get off the couch and back into play and activity grew by the hour. Even her sense of humor and wonderment started to re-emerge.

All of this is what we needed to see–at least it affirmed the decision we’d made to hold chemo therapy for a week. We’ve faced hard decisions all along, but it seems like we’ve always found our comfort zone and moved forward with confidence. In this one we know we’ve split off from the main stream of the treatment protocol and created a new path–probably not far off from the old one, and likely arriving in the same place… Probably…. Likely…. And there’s my problem.

You can only treat so much. Maybe successful chemo therapy is really a partnership between strength and poison. When the balance strays too far from center, there is a choice to reset the system. Dr. Zucker said, “It’s my job to break her down–it’s how we save her life… But I don’t want to actually ‘break’ her.”

This week is our reset–our new path begins with 7 chemo-less days, and it’s our job to ensure every one of them is a effective as it can be–to help restore Maya’s strength, flush out the toxins, and set her up to jump back into the fray with full Dragon-force.

I guess we never know with decisions like this or any of the others along the way… Get her to the doctor, get the blood tested, drive to Oakland, grit your teeth and hang on with every ounce of strength. We trust our team, we trust our instincts, and we trust Maya to show us what she needs. We gathered all the info we could, used care and counsel, and we did not hesitate. I suppose in the absence of immediate results we may rely on our process as evidence that we did the right thing. There is only to go forward on our path and do all we can to make it the right one.

In one week phase 2 of maintenance will start. 5 days of steroids (joy!), infusion of vincristine, oral methotrexate, lumbar puncture, and a return to 6mp. Right back into the eye of the storm and hoping to find that peaceful balance.

Thank you for your love and strength. Together we’ll get the balance back and our little Dragon centered again ready for the next challenge.

Metabolites and tolerance

January 17, 2017 Uncategorized
January 17, 2017  (Sara) 

We went to see Dr. Zucker today and we are grateful we didn’t need to get admitted. Dr. Z could tell Maya’s coloring was off at first sight and he “guessed” we’d be halting the 6MP for a little while. Maya’s labs confirmed his suspicion. It appears she is may not be metabolizing the 6MP (the daily oral chemo). Of course they tell you in the beginning “there is a rare chance of …this or that” and it appears that Maya might be proving her rareness in this not-so-awesome way.

Her liver enzymes are elevated but not near as elevated as I had feared (phew!). This means that while her liver is “angry” as Dr. Zucker puts it….it is still working. I did fear an elevated bilirubin that was confirmed today at 5.5 (normal maxes out at 0.8). Direct Bili is at 3.8 which indicates a halt in the 6MP. He tested for uric acid (normal). Kidney function looks great. Hydration looked good too….we’ll take those small wins! He also is testing for certain “metabolites”. We all have incredible enzymes that help us metabolize everything and sometimes if we are missing a specific enzyme it can get in the way of detoxing. Some of these enzymes could be depleted and we would never know…unless we were on chemo. That is what we might be looking at now. A possible deficiency in a specific enzyme that would normally not be a cause of concern unless heavily medicated with a very specific medication (i.e. 6MP). There is a chance we might need to deviate from 6MP all together but I will wait to hear the doctor’s insight before I delve into that issue too much. I did see that one of the tests looked high on our print out of labs but it might not be “too high”. I don’t know as it is not a typical lab value familiar to a dietitian. I don’t want to freak out over things I don’t know about….. Blah. I wish that was possible.
Even with good hydration, we still got some IV fluids for her while she had her budda button accessed. She slept for most of the appointment and Dr. Zucker noticed she was quite different than when he met the spunky and interactive Maya the first time. We are hoping the hydration will perk her up a bit. Her ANC is 3300…ironically this is pretty scary since this phase is supposed to keep her immunity at a consistent suppression. This is the third month with a high ANC. This only increases the risk of relapse since leukemia can mutate and then take over so quickly. IF she perks up, we can go ahead with her IV vincristine to knock down her ANC as soon as possible. If she doesn’t…we’ll have to wait. And as Dr. Z said “we can’t treat a sick child”. And she is sick. I can tell. I imagine the chemo is solely responsible but there could be a virus at fault too. We don’t know.
Our job is to keep her pooping, eating, and drinking. And we wait. Waiting sucks. But we wait together. I’m so thankful to have such a patient and loving person at my side. Scott makes this so much more easy than it would be without him. His natural patience is inspiring and tangible. I’m not saying he isn’t worried. He is. He is to his core but he has a loving way of dealing with his anxiety. And dealing with me.
We will keep you updated. Thank you again for all the love, prayers, support, light….everything.
Love is Life.

Trials and the unknown

January 16, 2017 Uncategorized 1 Comment
January 16, 2017 (Sara) 

I’m writing tonight with hopes of rallying some extra prayers, healing light, love, and some dragon’s strength for Maya. I continue to try and see…feel… “the easy part” of Maintenance that the doctors and nurses all have alluded to over the past 11 months. Yet here I am writing with fear tonight in the third month of Maintenance; we are due to close the first 84 day cycle of Maintenance tomorrow and start with day 1 of the second cycle Wednesday. This is pending now since we actually need to go see the doctor tomorrow. Though the new hematologist/oncologist, Dr. Zucker, has been kept abreast of Maya’s situation and he likely has been scouring her chart, tomorrow will be our first day as his patient. I wish it was for a less eager appointment.
Scott wrote a necessary post about our trials lately and I (once again) apologize for keeping quiet when I know people want to stay up to date. It is difficult when people ask “how is Maya doing?” and I can’t say “oh you know, she’s doing really well, thank you”. Truth is, Maya has not been great the last couple of weeks. She has been extremely constipated with very light stools that need assistance with passing. The poor child has had poop pulled from her bum too many times and now a fissure is contributing to so much pain…and withholding…cuz she is four. I’m sorry if that is too much information but it had to be said. It was traumatizing for all involved and I am certain I cannot drink enough scotch to make that memory fade. Not just the action of pulling matter from a bum…but the yelling, the coaxing, the begging, the crying, the threatening, the pleading, the whispering, the trauma. I hope she, as well as little Lincoln, don’t remember this part clearly for it is painful physically and emotionally. But we love her with every cell and will do anything to make her feel better.

While her constipation has been her most significant ailment, she has also been quite lethargic, nauseous each morning, some vomiting, belly pain and today… we see yellow. Mostly in her eyes, under the tongue, and even her skin a bit.  I know 6mp and vincristine can deplete liver function but this is really freaking us out. I can handle the laundry every morning from vomit soaked towels. I can handle looking at her on the couch all day. I can give her tylenol for her pain. I cannot handle seeing jaundice. I just can’t because I know the implications too well.
I have heard other cancer families (on Facebook blogs) talk about how the possibility of holding meds/chemo due to liver enzymes being too elevated. I am guessing that might be in our deck of cards. Dr. Salo said that (for whatever reasons) it is very common for the child to “crash” the first three months of Maintenance. Scott and I had no idea it would be in this way since usually her ANC is the most stress ridden lab value. It seems like with each month the symptoms of roid rage and appetite from Decadron come on quicker and linger longer and now with the jaundice creeping in….I am terrified of permanent damage to her organs.  I know the liver is an incredible and resilient organ but…well it’s hard for me to “see clearly” these days.  It is hard to imagine our stress level being higher than it was during induction but both Scott and I are feeling like we are swimming in anxiety. Even DI was more smooth than this and we injected chemo in our own child. Prior to Maintenance she was actually happy most days. Now…I miss her genuine smile with all my heart.

Motherly Assessment: I’m scared. She’s not terribly yellow but the corners of her eyes are no longer the straight white I am used to looking at. She is finally pooping thanks to the aggressive bowel care of Miralax twice a day, colace once a day, 5 oz of prune juice, aloe vera juice, high fiber diet and at least 35 oz of water. She feels pretty crappy. I’m not a doctor. I am also trying not to be a clinician since this scares the shit out of me. But….I’m guessing her liver is “mucked” up and her bile is not excreting enough to help with stooling. Our bile help make our poop brown and softer. Because of the shift between light and brown stool I’m also guessing it isn’t permanent damage yet. Tomorrow we will get to see labs. We will look to see if her liver enzymes are elevated and her bilirubin is high. If they are high enough, a halt on chemo will be initiated for a pulse of time.
I know I am strong but right now I am also a very stressed, fearful, and almost broken mommy. Thank you for the letting me vent and I truly apologize that any anxiety that might seep into other lives. I have such dear, close, and soul connected friends/family that I know you feel it too…

Love is life…

Teamwork

January 14, 2017 Uncategorized
January 14, 2017 (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.

The past 10 days have been rough, and not for the reasons most people might expect. In fact, I have doubts as I write this that I should even put it out there, since the thing that’s weighing on us so heavily is Maya’s constipation.
Maya didn’t go for 6 days. Each day that passed increased our anxiety and the aggressiveness of the bowel care (laxative) doses we gave. Each day increased Maya’s discomfort and her fear that pushing it out would hurt. By day 6 we pushed each other to the breaking point–she finally produced, and she bled. We all cried and made promises to do all we can to never reach that place again.
We spent a good portion of our Saturday again fighting the same forces–physics and fear. After hours of stubbornness and screaming, and after her strength was worn down even more (and I was questioning my own), our little dragon was strong and calm enough to push. It was very uncomfortable, traumatic in many ways, and it isn’t supposed to be like this. Maintenance is the easy part. No pressure.
We’ve been in contact with our new oncologist with updates and questions. He’s kind and makes himself available to us night and day by email and phone. I’m pretty sure Sara texted him a picture of some poop this evening–I made sure she sent a warning first since it isn’t polite to surprise someone that way.
We have some concerns about the effects of 6-mp and methotrexate on Maya’s liver enzymes (I’ll leave it at that… Sara’s motherly assessment would undoubtedly have more detail). There are worrisome symptoms in the constipation and other details (of which I promise not to show pictures). On the bright side, Maya is not turning yellow, and she obviously feels much better having cleared out her belly tonight. There’s more to do, but we made significant progress. She’s sleeping soundly next to me now, and just before bed she said, ‘You’re the best mommy and daddy ever. Thanks for taking such good care of me.’
These few days have taken us back to the stress of induction. I talked Maya through her fear of needles and procedures then; we had our moments, but we overcame challenges together because she never let fear take control. Surprising that something as simple as constipation has thrown us so far off the routine. As one oncologist I spoke to on the phone mentioned, ‘constipation is no joke.’ When I think back on the sleeplessness, lethargy, vomiting, radiating sciatic pain, fear, and what it took for all of us to get a little forward progress it is clear this is one of the toughest challenges we’ve faced since our time in Oakland. No joke.
Thank you all for being there for us, and for reminding us we’re not alone. Being a parent is hard. It’s also amazing like nothing else in this world that I know of. We’re blessed to have the chance to play this role in a life, and we’re blessed to have the support of so many strong, loving people.
Thank you.

Twenty Years Ago

December 31, 2016 Uncategorized

December 31, 2016 9:30am (Sara)

Twenty years ago, I was saying a tough Good Bye. I was grieving with many friends and family as we lost our April. She was my childhood best friend. She and I met at a babysitter’s and danced for years after that; thankfully our Mom’s were fast friends… because we were attached at the hip for approximately 11 years.

Not long enough.

As with this journey, twenty years ago my coping and grieving was supported with journalling…it was just much more private. My words are deep in a drawer, hand written on tear soaked pages. Twenty years is still too soon to revisit those words but I am certain I was not able to express my feelings like I am today. I was 15 years old and my world was ending. I was certain of it.

April was diagnosed with a brain tumor in June of 1996. It was a glioblastoma – very fast growing and her prognosis was not good. I’m sure I don’t know the whole story but the 15 year old in me was not taking her “6 months” as truth. While I had some friends, teachers and others recommending I “let her go”, I was grateful to have my parents, close friends, and April’s parents understand that “letting her go” was not about to happen. When, in November, her tumor had shrunk a little – it was one of the best days of my life up until that point. And when she was sent home on Hospice…I didn’t know (nor did I care) what Hospice was…she was going home! I had faith until the moment I could no longer deny that she was leaving me. And I don’t regret that one bit. Holding on was the best thing I could do. After all…there has been plenty of time to “let go” once she was actually gone.
April’s struggle started at the beginning but she exemplified a Dragon’s fight. She was not a child with no inhibitions or insecurities. She was a beautiful teenager. Her body started to change almost immediately. When thinking back, the effects of steroids and chemo were so much more severe for April than Maya. Maybe April had different coping and adjusting skills because she was 14 years old vs 3….but April had the more complicated parts of life to deal with. She was hurting, changing, dealing, struggling…she was dying. And she knew it.

There is a Death Cab For Cutie song that has lyrics in it – “love is watching someone die”. I didn’t hear this song until years after April was gone but no song has ever stabbed me in the heart like that song. Watching April go through this experience was one that I made me who I am. I did very poorly in school that year. I was a sophomore in highschool and rarely did I attend the amount of classes I needed – I don’t really know how I got out of making them up but the lessons I learned out of the class were far more important than what I would have had in class. I would attend April’s OT therapy sessions or hang with her in the hospital. We would have support sessions with friends and I had a boyfriend who was very supportive and helped me vent when necessary. My friends and teachers at the dance studio were life savers. April touched so many lives with her smile. Her laugh. Her beauty, kindness, and incredible soul that there was no lack of love and support for those who were suffering.
At 15 years old, I was definitely conflicted. I had the angst and struggle with ego while fear, sadness, and empathy for my bestfriend hovered every moment. People would ask how I was doing and while my journals likely prove I was suffering and struggling, I was angry that people would ask me that. I wanted to shout “it isn’t about me!”. Yet when in a room by myself…I felt like I was also dying. And part of me did. I shed a layer of skin I will never get back.
When Maya was diagnosed, I heard so much of “I can’t believe this is happening again” or “I am so sorry you have to deal with this again”. April’s story is a different story. I don’t feel like this is an “again” type of thing. This is such a different experience. One that will change me again. Another layer of skin is shedding. But aren’t we always shedding? Everyone has struggles and battles. We all lose. We all win. I just hope we all laugh at times too.
I can’t imagine the universe would reunite April and I in this same life but…part of me feels April in Maya. At least her strength and perseverance. Or maybe I continue to feel her within my self. Next to me always.

April died on January 1st around 1am. She had been in a coma since before Christmas and one might have argued that we lost her then but…again – I wasn’t letting go until I had to. And then I did. Because I had to. So I did. I let her go. We always had a party on New Years. She LOVED to watch the ball fall in New York or wherever it may be falling. When it was obvious to Aunt Katie and Uncle Norris (her parents) she was leaving – they called me up to her house. I went in and crawled in bed with her. I left mascara marks on her bed sheets. I remember rubbing her hand that was wearing the butterfly “best friends ring” that trio’ed mine and Genessa’s. I held her for a while before I had to leave. I have no idea how long that was. As I left…I realized it was raining. I’m not sure if it was raining before I got there but it was raining when I left. It rained…actually it poured…all night the sky weeped for our world. It rained so much that night that my dad had to wake us up at 5am to help with sandbags to prevent flooding. I mean really…why not cause a little drama with your lift off April? It was a night that is painful to remember but that I will remember for all of my time.

Twenty years ago now and my heart still wants to call you on the phone. I miss you like I did back then and I ache to hear your laugh. Today you would probably be a mommy like me. You’d be such a fun and great Mommy and Auntie to my children. It has been most difficult when things are great. When my life has been awesome, I miss you most. I’ll try to celebrate you tonight rather than mourn as I usually do. That gets easier with the years but I’d be lying if I said it was possible. I see your dance in the clouds, your eyes in the stars, your smile in the moon, your breath in the wind, your heart in every daisy I spot, and your energy is surrounding me with every speck of pollen from every flower on Earth. You’re with me always. I love you with all my heart, infinity.
Happy New Year friends and family. May this year be our best year yet. May our losses feel like wins. Our tears from laughter be more abundant than those of sadness or fear. May 2017 carry a beautiful shift of energy for our world. One that leads to unexpected happiness and progression for the better. May we all feel loved and safe. And May Childhood Cancer Research continue to thrive and one day lead to eradication of suffering children due to random bad luck.

Love is Life.

Family

December 21, 2016 Uncategorized 1 Comment

Dec 21, 2016 10:08pm (Scott)

Today we started our third month of maintenance and another five days of steroids. Sara and I are getting used to the symptoms now–extra sensitivity, enhanced appetite, sleeplessness and sleepiness. These five days will be an adventure, but we’ll all be together with the holiday cheer as a welcome cushion.

Today Maya got another dose of vincristine, oral methotrexate, decadron, and sometime later in the evening she will have her her daily ml of 6-mp. She handles taking all these meds like a champ and rarely complains. Bowel care becomes a special concern when layering all these drugs together, so we often give miralax and colace (which is just awful… imagine grapefruit juice and baking soda shaken together with dish soap and some cheap scotch).
It would be easy, I think, to let all these procedures and medications, their schedules and their side effects take center stage in your life. But Maya moves past them like mile markers, focusing instead on the experiences with the people that color her daily life.
There’s power in community, and it isn’t just the security of the helping hand. There’s power in seeing those you trust and admire work and dream and achieve–power in wanting to be part of the strength that allows for achievement. There’s power in continually meeting new friends and families who overcome challenges in the same way and bond together to improve the lives of those around them.
Today we met a young woman named Marin who, along with her brother, had decided to donate some of their own prized possessions to the kids at Renown. Maya received a baby Rapunzel doll (she’s sleeping with it next to me as I type) and a treasured princess book which will be carefully placed in the ‘library’ next to her bed. It’s inspiring to see kids exploring the idea that their most valued possessions might be even more fulfilling in the hands of others. Thank you, Marin, for taking this step. In doing so you expand your community, strengthen yourself, and strengthen those around you.
Tonight the WNC Community said goodbye to a dear friend, Prof. Renee Magrini, who passed away on December 8th after a long, courageous battle with cancer. Renee was a very private person, but she made strong connections with people, and she empowered students (including Sara) to strive for their goals in the sciences. Renee reached out to me early in Maya’s treatment encouraging me to embrace the support groups at the children’s hospital. She said, “It’s hard to explain, but if you go, you will see that it will make a big difference to talk to “people just like me”.  It will make you stronger to help [Maya] through the road ahead.”
It’s about the people–Renee knew that, and Maya seems to understand it too. Thank you all for being there–for being a community with so much to celebrate. Warmest of holiday wishes, and merry Christmas to all.
Thank you.

Twelve-fifteen-twelve

December 15, 2016 Uncategorized

December 15th, 2016 (Sara)

Yesterday, or any day between June 15 and yesterday, if you were to ask Maya how old is was she’d say “three and a half”. It would take mommy or daddy to chime in to correct “she’ll be four tomorrow”. Today though…she is a solid “FOUR”. The dragon was born four years ago this morning. After some minor complications, oxygen needs, chest xray, iv antibiotics…and approximately 12 hours she was finally on my chest and things looked like they were going to be okay and didn’t need a trip to the NICU.

I had a beautiful pregnancy…played everything by the book…took birthing classes, researched, mediated, ate the best foods (duh, Registered Dietitian here). Gained perfect amount of weight. Taught dance till 48 hours before I went into labor. Studied for school. Took a final exam (early) just 36 hours before she was born (Thank you Dr. Ashley). Prepared intensely with Scott for a natural child birth. Survived a 100% natural child birth. I wanted to be sure the baby didn’t have any medicine in her that might make her groggy so she could find the breast and start suckling right away. Everything was going to be smooth. Right. I mean I knew having a baby was going to hurt. I have a high physical pain threshold, pain control was not a fear of mine. Scott and I are a great team. We had confidence we could do this. And we did.

After laboring for 8 hours at home and questioning I was even in labor (thank you again Nikki Mitchell for helping me catch a clue), my water broke and we were off to Carson Tahoe Hospital. Arriving at a disappointing 3 cm dilated I had to stay since my water was broken.

After another 9 hours of more severe labor, Maya was born: 4:55am. She was the most beautiful baby one could lay eyes on. Wait. Is she supposed to be that purple? Shouldn’t she be screaming or something? She doesn’t seem to be moving. Uhhhh…..maybe if your rub her a little harder she’ll wake up. She sleeping? I don’t mind a lazy baby. Not sleeping. Probably not sleeping. Okay just rub her more. I’ve seen that in the 100 videos I watched. Suction? Suction more. Suction more please. Come on baby girl. BREATHE! I looked at Scott and I have never seen him so white. I hope I never have to again. While I’m 0-2 at having my OBGYN deliver my babies, I’m grateful for Dr. Koch. We don’t know each other but I appreciate how she was Strong and Calm well before we knew we’d need that motto. She quickly cut the cord and they whisked Maya to the side table. Dr. Koch tended to me. After some extensive suctioning I heard the first dragon cry. I want to say it was the most perfect cry but…reality is…it was the most bubbly cry I’ve ever heard. We knew it wasn’t good. It was muffled and unhealthy. The Dragon was in trouble.
Maya had aspirated some of my mucus plug. The aspiration led to some extreme heavy breathing which led to the “transitional something or something or other” diagnosis. After a lovely (well as lovely as child birth can be) marathon dance party we did that night, she took a deep breath too soon and choked. We were so happy to be able to have her treated by the amazing labor and delivery team at Carson Tahoe. They did a fantastic job and was able to help me initiate milk production even with all the stress and lack of baby that first day. Four years ago right now (approximatly 9:30pm) Scotty and Maya and I were all in our room at CTH getting to know one another. She had an IV in her arm with a baby sock over it for 3 days but we discharged to home happily and after those first hours of scare, I have nothing but amazing memories on the 3rd floor of Carson Tahoe.
Maya was actually quite planned. We knew it was a long shot, but we had hoped to have her during Christmas Break. Scott was still teaching back then and I was finishing up degree. Having a child close to Christmas is so special. This season is like no other time of year. Some years, the holiday season is incredible while other years it is filled with loss or pain. Either way – the holidays are intense. And what better time to find a reason to celebrate.
As stressful as December has been for Scott and I (dealing with this shift of Stanford to Renown, insurance crap, and work dynamic) we have had such amazing magic. Last Friday we got to open our door to the most magical part of the holidays…CAROLING! Stephanie Arrigotti of the Western Nevada Musical Theater Company….and a family friend for my entire life….set up caroling for our family. Last year we were able to go with the group to long term care facilities but since Maya can’t even go to a park – rehabs and facilities like that are not on the list of recommended. So. The kind souls bundled up and came to us. We had our Friendsgiving dinner that night with Auntie Megan, Uncle Adam, Auntie Genessa, and Liam so they were able to witness the magic too. Maria (one of my dearest friends) sang the sweetest carol and my nose still tingles when I think about that night. Thanks to all involved for bringing such a sweet experience to our home.
In addition to caroling, there are Christmas parties! Also not something our family can commonly partake in these days. BUT we were invited to the Northern Nevada Children’s Cancer Foundation’s Christmas party at the Eldorado on Tuesday. It was SUCH an awesome event filled with great food, dancing, amazing fellow cancer families, the best nurses, awesome fire fighters (with Yo-Yo’s…thanks to the one that gave Maya her green yo-yo…I know, you couldn’t say no). SANTA and ELSA! Oh and Olaf too. What a night we had! 
It is funny to think we were hesitant to go but I know we would have regretted it. It was amazing to make it through the night and realize I didn’t hear one cough, sneeze, or sniffle. I sort of imagine a person would be shamed if they showed up to an event like that sick. There were little bald heads bobbin around and others clearly in maintenance with hair growing back. Some kids had finished treatment early in the year and others finished years ago but still get followed closely. I was able to catch up with a few people that are becoming more and more close as this whole thing plays out.
Maya and Lincoln met Santa! Maya has been hesitant about Santa because…well she’s smart. But she got more confident as the night went on and she walked right up on the stage and sat on his lap. Lincoln….not so much. But daddy helped him cope. I have been asked what Maya asked Santa for Christmas. Truth is, she actually just wanted to know if he and Elsa ever hang out. My child. Ha. I don’t think she got an answer. 
The night ended with dancing with some wonderful nurses that we love. We practically had to drag Maya out because she was having such a great time but Lincoln turned into…well the only way I can explain his behavior is that of a drunken noodle. Really. He’d just grab my hand and his legs would go lifeless as he giggled. So weird. Maybe someone spiked his koolaid. Needless to say, with all the excitement and the late night, we were a nervous it would lead to the very typical crappy night of sleep but, we actually ALL slept until about 6:30 the next morning. I’m not sure who to thank. Maybe Santa heard my Christmas wish from 10 feet away. Thank you for whatever power it was that gave us that sleep. It was truly the best night of sleep I have had in months.
Today we celebrate Maya. To be honest. It seems a little like that first birthday. Almost as special. Thinking back to Friday February 12th, 2016….We didn’t know we’d get to see another one of Maya’s birthday’s. I hate to think that thought crossed my mind but – I’d be lying if I didn’t admit this birthday is more of a relief than anything. I am amazingly thankful for the help of our medical team and our kick ass pediatrician who got us to Oakland in plenty of time to beat this thing. Because of that, we are able to celebrate this wonderful child’s birthday again. When you ask her how old she is today – she will say Four. If you ask her when her birthday is, she’ll respond with “twelve-fifteen-twelve”. This might be strange to some. Why doesn’t she say December 15th? Because she is a cancer kid. When we verify her birthday for her meds and/or chemo, we say 12/15/12. She hears the nurses double check chemo with 12/15/12. To me, it is a reminder that we are survivors. We have made it this far as a family and I know we will continue to stay strong. My kid spends more days in the hospital than most and she might not know her birthday is in December….but she is stronger than most. She is so beautiful. Loving. Tough. Kind. Smart. Caring. Funny. And Alive.
Happy Birthday Maya the Dragon. May this year be your toughest. May the next year be the first of many many more. 
Love is Life.