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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.