Uncategorized

Sept. 9, 2016 125pm (Sara)

I have started to feel the fog lifting a bit. It’s been just about 7 months since Maya’s diagnosis and our lives have changed in unbelievable ways but today… It actually feels a little normal now. Maybe when they say “it gets easier” they don’t mean the meds get easier to handle or the side effects subside…they mean we adapt. We accept. We grow as a family. We move beyond grieving and into a new normal. All the cleaning and isolation once seemed so daunting. It now is just a thing we do.

Today we are hanging out at the clinic – it’s just a thing we do now. We always arrive to friendly faces. They are our new friends here at the clinic and with each visit we all get to know each other more. In fact, even Dr. Salo is easier to talk to. It doesn’t feel so frightening to ask questions or her opinion. Dr. Salo’s schedule is slower today so we actually got a chance to chat with her about things that didn’t necessarily surround Maya entirely. It felt like a grown up conversation.

It’s the little things that make our lives feel “normal”. We now know what to expect with most of our visits. We know exactly where the great breakfast burritos are in the Sierra tower cafe. We know what time “the animals wake up” down at the gift shop (Maya eagerly waits for the giant stuffed animals to be placed out around 9am). We know where the snacks are in the nutrition room. Maya has her favorite chair that she often chooses to sit in while getting accessed. Today, I was so impressed with Maya…she sat in her own chair (all by herself) while Denise accessed her…and she didn’t even need to hold my hand. What a surreal feeling.

I look back at the last several weeks and what we have been able to do: amazing visits with family, birthdays, trips to farmers markets, bike rides, lake trips, new friends, growing, learning, laughing, loving. 7 months ago, I anticipated more days like the first couple months. But really we have been able to enjoy. Our lives are changed. We are changed…but we are far from broken.

The support our friends and family continue to share is incredible. All the turmoil in our country and world is tangible yet we continue to be on people’s minds, in their hearts and prayers. Thank you from the bottom of our hearts. We truly can’t wait to be Out In The Wild more often so we can share our gratitude with you all. Please know there isn’t a day that goes by that we don’t feel the love and support. If only there was something we can do to let you all know how much you mean to us.

Maya’s ANC is 1874 today. Normal liver and kidney function. Her platelets and hemoglobin are with in normal range and she is truly just perfect. A day at the lake is in order.

Love is life.

Sept 3, 2016 (Sara)

I have been following a young boy’s journey on Facebook. His name is Tyler. Tyler Armstrong. He’s 12. He is not necessarily “close” to me or my family physically but he has been fighting leukemia for 6 years. Maya’s fellow fighter, Alicia, and her amazing mommy, Heather, encouraged me to follow his journey. Alicia is treated in the same clinic. I don’t know their relationship but I sort of imagine he is their “Victoria”. A hero.

Well…he lost today. We all lost. While I was enjoying a day of high ANC by farmers market and a wine walk….another mother was hearing her son’s last breaths. A family had to say goodbye. I am no stranger to this. I feel it deeply.

There are no words. There is something so surreal when contemplating the “90-95%” cure rate when it comes to Acute Lymphoblastic Leukemia. My child has 90-95% survival rate because of sacrifices like this. Chances are Maya will continue to thrive …that it won’t take my child. But the reality is that it could. I am heartbroken for this family. For the community and the world. We need change in all the right places. Certainly more than 4% of cancer research money.

I ache for this family. I ache for other families that have had to sacrifice their own. Perhaps tonight I ache for my own family. It’s hard to witness pain like this without feeling the possibilities of reality.

I wish there was something I could do to make it better. I wish I didn’t feel like throwing up when considering the possibility of relapse for Maya. It’s amazing how life changes so quickly. How we think we know how to live and love but we really have no idea. How as a nation, a world, we fight each other when we have bigger evils in common. Let’s make it stop. I just want it to stop.

Please send some love, light, prayers (what ever you might have to give) to this family as they send their son off to transition to the next realm. He is our warrior of Love and I wish him and his family the best. Hug your family. Love is life.

Sept 1, 2016 (Scott)

Tuesday’s numbers were strong. Maya’s Hgb and platelets were solid, and with an ANC over 1100 we were able to move on to Interim Maintenance 2.

The dog days of summer are here and so is the start of a new fall semester. We see family and friends transforming their lives back to the demands of the season and working extra hard to soak up the remaining bits of summer. By the end of IM2 we’ll be well into fall and thinking carefully about what life can be like for the following 18 months or so of treatment.

IM2 is a relatively easy phase: monthly LP and chemo infusions every ten days. The IV doses escalate as you go and slowly increase risk of side effects like mouth sores from the methotrexate. Blood counts tend to be stable during this phase, so if Maya is feeling good we’ll take advantage of family visits and cautious outings.

We are humbled by the continued outpouring of support from all over our communities. The help, care, and love sustain our spirits through the weary moments. You all make us stronger for Maya. Thank you.

Aug 24, 2016 (Sara)

No chemo today…Maya did not make counts this morning. After a very pleasant visit to see all our favorites at the clinic, we are driving back home without chemo. Today was our first opportunity to start Interim Maintenance 2 (our favorite phase) which consists of a monthly lumbar puncture and chemo infusions every ten days. This phase is our favorite because Maya’s ANC actually recovered nicely during the first Interim Maintenance and we saw numbers that looked like a normal healthy kid! There is no scheduled oral medication aside from her multivitamin and vitamin D (and some bowel care to keep constipation at bay).

For some reason, this delay doesn’t feel near as bad or stressful as the previous delay…it’s amazing what experience can calm. Aside from scheduling around work and tying to find a good week to rent a house at Tahoe, this delay actually feels fine. We have an appointment to check labs again Friday. If she is at or above 750, we’ll move on ahead.

Our fingers are crossed for Maya’s buddy, Ethan, today. He and his family came to clinic this morning as well – today is his second check to start IM2. While today’s delay is not as tough as previous delays, there is something reassuring when our kids follow suit with the protocol. Maybe it’s safety in numbers…or, I suppose, research. I hope he’s recovered today and moving forward.

Maya’s ANC is 560. It was 470 nine days ago and then 520 seven days ago. The trend is definitely going up but who knows how long it will take to reach 750. Her other numbers are looking good. WBC are quite low but her Hgb and platelets look just fine.

Her energy is great and she is keeping us on our toes. She continues to thrive and with Delayed Intensification behind us…it’s hard to not feel a sense of ease creep back into our lives. This journey is far from over but the mountain that once looked like a burning volcano with no safe path to the other side…looks more like a ski lift up the face of Slide Mountain in a storm. Not that riding a ski lift during a storm isn’t scary…it’s just doable. We will buckle up, close our eyes, hug each other tight and…hold on for the ride. The chances are, we make it to the top and take a exhale…then ski down.

Moving forward sounds good but as we left the clinic today – Angela said “enjoy the next few days above 500”. And we will.

Love is life.

Aug 21 932pm (Scott)

For the first time this summer a thunderstorm dumped giant desert rain drops on our neighborhood. We stood outside under cover of the entry way and watched as Lincoln repeatedly ran into the downpour, screamed with joy, and ducked back under cover. The kids were mesmerized by the thunder rolling across the foothills, and we all soaked in the sudden burst of humidity. Other than the funny bald head of a joyful three year old, this was just another ordinary, or maybe miraculous, summer afternoon.

We haven’t seen rain since the spring (when we saw quite a lot). It’s late August already and the summer’s end is getting close. Time has flown by; it’s been more than half a year since Maya’s diagnosis.

Today I looked across the table at her during lunchtime; the white cabinets behind her created enough contrast that suddenly I noticed new fuzz growing all over her head.
I said, “Maya, your hair is growing back.”
She took her time chewing her food and asked, “What color do you think it will be, daddy?”
“I hope it’s purple,” I said.
Maya looked thoughtful for a moment and said,
“I hope it’s blue.”

This whole thing is far, very far from over. And I suppose with the stress of delayed intensification I may now be slower to recognize such an undeniably hopeful sign as peach fuzz appearing on my little girl’s head. We told her it would happen eventually–we did that so she wouldn’t worry about her appearance. But I’m not sure I ever thought about convincing myself she’d grow hair again one day.

Maya is doing great. She’s strong, stubborn, and sometimes calm. She doesn’t doubt her own strength ever, and she doesn’t doubt the support she has in this fight. We are so thankful for the progress Maya has made, for her medical team, our family and friends, the anonymous champions, and, from everyone, the collective love of life that has sustained and propelled us.

Wednesday we go back to the clinic. If the labs are sufficient we’ll move on to interim maintenance II. This is a repeat of interim maintenance I, so we know what to expect. It’s still chemo, but it’s very nice to think about putting DI behind us.

Thank you all for your care, support, and love.

Aug 16, 2016   9:30pm (Sara)

Aug 11, 2016   9:00am  (Sara)

Aug 3, 2016 10:14pm (Sara)

Option Care made one more delivery for us today. We hope this is the last we’ll need. In today’s package arrived three syringes full of ARA-C. They have found themselves a home in our garage fridge until we use them all over the next few days. In addition we got more heparin and saline flushes. It looks like they sent us more chemo gloves, masks, and bags for spills. We already have a sharps disposal bin as well as the chemo disposal bin so I’m happy they didn’t send us another one. Those have a nice home on the dryer…well away from any growing arms and curious fingers. We are all set to complete this week’s infusion.

Four more days of ARA-C and 6 more doses of oral chemo (6TG) for this phase. Then we get two weeks off. The “two weeks off” may or may not feel like a break but at least we won’t have to worry about infusing chemo into her port or convincing her that the “tootie fruity” flavored pink stuff is indeed medicine. She’s usually so good at taking meds but since this med has to be on an empty stomach…Maya usually fights it. As a dragon does, right? Ultimately, it isn’t too much of a battle but we all look forward to not having to do it for a while.

Today we got to see our friends at the clinic. We got to see Denise, Mary, Ty, Lucy, Jessie, even Patty. We got to hang out with Dr. Salo along with “pig” and “cow”….these are Dr. Salo’s little animal flashlights that make an “oink” and a “moo” when the doc is checking Maya’s mouth for sores. When Scott and I actually need to have a conversation with the Doc…she often hands Maya these flash lights and we get a solid 10 minutes to discuss. It’s genius really.

After Denise accessed Maya’s port (aka her Boodah button), we had a bit of a wait. Unfortunately the clinic was busier than I have ever seen it. Unfortunate for us in that we had to spend more time there than anticipated – and had not prepared for it really. I always burn myself when I think it will go quick. I didn’t pack substantial snacks or a lunch. I didn’t think to bring my breast pump (ugh). Scott missed meetings. I missed an appointment. Maya was grumpy…and we all left very hungry. But mostly it was unfortunate to see how many people are getting treatment right now. There were at least 3 little shiny bald heads running around playing in the play room. There were 3 or 4 other kids of all ages hooked up to noodle poles just getting chemo for brunch.

Then, of course, there were the families: moms, dads, siblings, friends. All of us trudging through this muddy day together. We do not know each other but we are all there together. We are fighting together. We might look distracted; we all stare at some sort of device. Some diligently working on lap tops trying to keep production alive among this chaos. Some playing video games on the play room Wii. Some glaring at their phone – at whatever distractions we all can find…to suspend our reality for even just a few minutes. Many breaking our gaze upon the phones or computers to see if anyone else would make eye contact. It’s not rare but eye contact is always intense while in the infusion clinic. We need some sort of salute to one another. A salute to each other. To recognize that we fight together. To help clear the fog and remind each other we are not alone. No matter if we are strangers. I see you. I feel your pain. I fear the worst with you and I ache for the best with you and for you. We all wish we could meet in some other realm in life but this is ours. So here we stand. We stand up. And we stand up together.

Speaking of families – it is always a pleasure to see our superstar, Victoria. And of course her mom, Iris, and brother, Marcus. What a wonderful and strong family. I’m SO pleased to say that Victoria has 7 days left of chemo infusion and on next Friday August 12th…she gets to go ring her “no more chemo” bell. As much as we’ll miss seeing her, I am thrilled for the whole family. For the world actually, that this young lady’s life is saved. She will do great things for this world and I’m beyond proud to know her. Congratulations to the Mathews family. Strong and calm never looked so good.

Motherly assessment: WBC: 1.8, Hgb: 9.5, Platelets: 285, ANC: 1000. Liver function: normal. Renal (kidney) function: normal. Electrolytes: normal.  Maya is good. I have told many people and perhaps I have eluded to this notion in past posts but…if Maya wasn’t so bald and I didn’t see a consistent drop in her white blood cells, I would think we were placed in some placebo-group in the study. Overall she is good. Not good, great. She runs, plays, climbs, and is killin’ it on the balance bike. She is learning and memorizing almost everything she hears. She is working on sight words (she can pick out Maya and Dragon in any sort of literature). She is adding: she (without being prompted) added 10 and 11 when talking about how many people we have in our family with Gramma Sandy. Yes she said “twenty one”. I don’t think I’ve seen Gramma Sandy’s eyes so big as when she was telling that story. Maya doesn’t seemed phased or changed at all. It is truly unbelievable. This next week might feel a bit more rough but The Red Devil has been on the losing side so far. While Maya the Dragon isn’t done with the battle yet, she most certainly has won most of the rounds in the ring. She’s about to make the Red Devil go running with his arrowhead tail between his legs. Thank you for helping to save my child’s life but…bugger off Red Devil.
Love is Life.
s

Jul 30, 2016 1:52pm (Sara)

I work with families and patients that need Option One – this company supplies many medical necessities from tube feeding formula and pumps to…chemo. I never, in a million years, would have thought my family would be needing this type of service. But I suppose that is the way life works; life is so unpredictably challenging at times.

Everything we need was delivered to our door yesterday while we were at the clinic getting Maya accessed again. Thankfully, my dad was able to sign for it. They supply everything from masks, chemo gloves, alcohol wipes, saline flushes, heparin flushes (two different concentrations), chemo gown, spill kit, cytotoxic disposal bin, sharps container…and more. The nurses make infusions look so easy. We know they are not “easy” but after as many times as they have to do it…they sure make it look like second nature. It is definitely not natural for us.

Today was our second time giving Maya chemo here at home. We set everything up on our counter. Yes our kitchen counter. Initially, we debated on where to do it. Lincoln is a critter and into everything so we had to make sure that Maya and the chemo were well above his reach. We thought about the bathroom but…even as clean as we keep almost every room in our house…people poop in the bathroom. Kitchen. We chose the kitchen counter. I suppose it is ironic that Lincoln’s poop diapers often get changed on the same counter…but I didn’t think of that until after the chemo was done.

Today we tried to give her chemo and deaccess her as early as possible. That way the needle in her chest attached to the noodle-like thing is less of a worry during playtime.

Strong and calm has never been as necessary for me. I’m so thankful and grateful to have Scott by my side for countless reasons but today I needed him to help me stay both strong and calm. He helped me remove the sticker entirely before pulling the 3/4″ needle from my childs chest. He makes me feel like I can do anything.

Maya is doing well. She is tolerating this chemo well for now. No complaints of nausea. No lethargy. Slight constipation but that isn’t new. This chemo (ARA-C) as well as the chemo they infused in Oakland (cyclophosphamide) have about a week delay of effects. Fingers crossed the dragon keeps her strength up and continues to dominate this battle.

Love is Life.