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Rally Caps

June 30th, 2017      (Sara)

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

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

Sunshine and Ice Cream

June 6th, 2017   (Scott)

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

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

Into the Weeds….and Back Out.

June 14th, 2017       (Sara)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love is Life.



June 7th, 2017    (Scott)

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

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


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.

Just Breathe

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   (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     (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.