August 29th, 2017 (Scott)
We’re sorry for the delay in communication. Many of you know there were some surprises with labs on Monday, and while we try to avoid suspense, we just didn’t have the energy to write a post after that kind of day.
Maya is feeling fine, and most of her cell counts are very strong. The shock on Monday was that Maya’s ANC was 180. If anything, we were concerned that her ANC would be too high– in fact, just two weeks earlier it was 4500. It’s hard to say what the reasons are for such a swing, except that there are multiple reasons and we’ll probably never figure out exactly what they are.
Maya’s HGB was 11.1 and her platelets were almost 300 (both very strong). That would indicate (in my opinion) that we’re not overdoing the 6mp. Other common factors that would affect ANC include exposure to viruses– Linco and Maya both had recenly re-entered the world of preschool pathogens, so it seems likely this would be part of the answer.
With ANC under 200, we immediately removed both kids from the Child Development Center and have quickly re-established our ‘bubble’ at home. Aside from the worry and uncertainty with Maya’s numbers, keeping both kids out of school is the hardest thing to deal with. They both were embracing some real normalcy and were doing so great– making friends and having wonderful new adventures. The scheduling of childcare is a challenge too, but our A-team is always ready with Bapa Pat riding to the rescue at a moment’s notice… the kids are never mad about getting to spend the day with Bapa.
Maya is off chemo for at least a week as we wait for her ANC to recover. Since her other counts were good, it’s anybody’s guess what things will look like next Tuesday. Sara and I are thankful for many things– no need for transfusion and no sign of relapse are very high on the list.
We spent this past weekend visiting Nona in Sacramento. It was wonderful to see Nona Jeannie– the kids are absolutely crazy for her. We enjoyed great food and hospitality, and we took advantage of Nona’s beautiful backyard pool as well. On Saturday evening we were guests at the annual block party– more great food and some new friends too (see pics). Maya and Linco made fast friends with Marley and Maya (7 year old twins). In fact, their first play-date happened the same night, and the second one happened the next day! Marley, Maya, Evelyn, and Mike have a gorgeous home with a great pool and play area in the back– our kids thoroughly enjoyed every bit of the fun and friendship. Thank you all for your amazing hospitality– it was very nice getting to know you, and we hope to see you again soon.
We will work toward stability and recovery this week and keep you all updated on Maya’s progress. With a little luck we will have the kids back in school in a couple weeks. Thank you all for your support and love.
August 22nd, 2017 (Scott)
As of this week Maya is back to school, and the only way to really accurately describe her excitement level is, F#%$ING STOKED!
Maya has always loved school– she started before she was two years old in Miss Sally’s class, and the songs, routines, and relationships quickly became part of her identity. We’ve made many difficult changes during Maya’s treatment, and taking her out of school just as she turned 3 and joined the ‘Rockets’ was among the hardest– it’s just that important to her, so Sara and I are glad to be able to add that component back into her world.
Over the weekend, Maya got her first taste of back-to-school shopping which was off-the-charts awesome. She was allowed to pick out quite a few things on her own which led to some interesting results. She left the house excited about seeing the special “room at the store where they let you get naked” (dressing room), and she returned with an alter ego (see picture below)… that’s Fireflash… well actually it’s Fireflash Josephine Morrison. Anyway, Fireflash rocked that first day back at school like a superhero should… sparkly gold shoes and all.
Returning both kids to school is also unmeasureably stressful for us. The kids are handling everything fine– the normal sniffles (no fevers) are coming and going as they adapt to a more biologically diverse environment. For us, I think, it’s hard to break away from the safety and the routine of the home/bubble. As with any of the transitions we’ve faced along the way, we will adjust here too, and we will handle what challenges come our way together.
Maya’s most recent trip to the infusion center was just about a week ago. She hadn’t been for more than a month before that, so we prayed for ‘no surprises,’ just strong numbers. And for the most part that’s what we got– good counts for platelets and hemoglobin, clean liver function too. The one worry was that her ANC was higher than we’d like for Maintenance– around 4500 (we’re aiming at closer to 1000). There are a number of reasons this could have been high– fighting the new bugs that little brother brought home from school could do it, or the current dose of 6mp might be too low. Most likely it’s a combination of things, and I have to remind myself often that as we try to regulate and monitor her numbers, Maya is growing and changing before our eyes. She’s adding height and weight, her activity levels are increasing, and she’s going more and more places as we continue to expand outside the bubble. So, we are patient, and we take adjustments slowly– we’ll go back in a week for more labs and consider tinkering with dosages then. For now, we value the strength and energy our little dragon uses to re-engage at school, and we revel in the ease with which she adapts back to that environment.
Maya’s treatment end date remains at April 21, 2018– a date so near and yet so far. We have started to turn daydreams of celebrations into plans, so please keep your ears open for information on our ‘Aloha Chemo’ party (that’s the ‘goodbye’ aloha). We look forward to honoring Maya’s strength and the power of an exceptional community that has supported our little family through it all.
Good health and peace! Thank you.
August 3, 2017 (Sara)
As a child, I thought there was something magical about swinging. It didn’t really matter what kind of swing. The school yard type swing set where best friends are born. A porch swing, with or with out cushions. A boat style swing that could fit 6 small children (or two adults). Or even just a piece of wood dangling from a rope attached to an old tree. Swinging has always been one of my favorite things to do. The summer I lived on Kauai, I found a swing set about 100 yards away from Kalapaki Bay. I think that is what my heaven is like.
It wasn’t until I was in my degree to become a dietitian when I found out that swinging is actually not magic. It’s science. Swinging acts like magic because it helps to stimulate the vestibular system. I remember a fascinating discussion on how actions like swinging actually bring “balance” into our bodies and help us not only feel more relaxed and soothed…it can make us happy. I want to be happy. I want everyone to be happy.
The past few weeks have been full of happiness. Maya and Lincoln have been wonderful. Maya has had more energy and spunk than I have seen in…well years! Between work days, the kids and I have spent time at the Lake and at the besties’ house with Aunty Megan and Liam the Great. We have had visitors and fun days with the Bapa’s and celebrations of the Grandma’s (both) birthdays. We have had ice cream and farmer’s market trips and even a day at the 3rd street splash pad. Aside from some necessary reminders, the occasional stress triggers (oh and Maya’s first sting by a wasp!), the last handful of weeks have looked very “normal”. It has been amazing.
Last week we finally put Lincoln in school. He is now officially a WNC Bumble Bee and spends a few days a week with Miss Sally and friends. His school is right on the WNC campus so daddy gets to pop his head in and check on him from time to time (just like he did when Maya was there). Linco has been great. He didn’t cry the first 2 drop offs but only said “Maya and Mommy left” when Scott asked how school was. Maya loved going to the school. She found her classroom right away and well…mommy had a little harder of a time.
I hadn’t really prepared myself for the possibility of an intense emotional reaction. I prepared myself when we returned to the doctor’s office where she was diagnosed. I was very prepared when we returned to Oakland Children’s Hospital. I knew those places were going to bring up some memories. I truly had no idea that The Rocket’s Room would trigger (what I can only imagine was..) an anxiety attack? I walked down the hall thinking “wow, I can’t believe Linco is finally in school”. We got to the end of the hallway where Maya’s old room was…I saw the hooks where we used to hang her jacket outside the room and sign that read “please wash your hands when you enter”. Right then I felt a little off…mostly in my belly. Maya said “this is my room right mommy?” as she opened the door. I said yes and just then felt a wave of sickness come over my body. It was as if I was getting sea sick and I gagged. I almost threw up right there in the hall way. I had to hold down my breakfast and then I started to shake. My knees almost broke beneath me but I kept up some how. Then the crying started. I couldn’t get myself to stop crying or shaking. I wanted to curl up in fetal position but we all know….that is not an option. I couldn’t keep looking in the room because all I saw was the ghost of a little girl…more pale than I ever want to see a child. Breathing heavily with red puffy eyes. And I saw Miss Chelsea’s face filled with fear as she said “her heart is beating so fast, Sara.” I knew she was sick. I had seen her getting more pale – I especially noticed it when I watched her in a recent ballet class but…this was the moment. The very moment I knew my baby girl was sick. Like really sick. That moment when she opened that door took me back to 18 months ago when I was more scared than I have ever been in my life.
Well anyways, after a few embarrassing moments of teachers telling me “Lincoln will be fine” and Maya asking me “why are you crying….again mommy”. I pulled it together to get through the rest of the drop off and headed out to lunch with Maya. It ended up being fine but I do hesitate to look down to The Rocket’s room from now on.
After a few days of school Lincoln has much more to say about it. It has been fun to see how the two of them (Maya and Lincoln) interact when he gets home. Whether Lincoln’s return is at noon time or after work, the two of them fall into play time without missing a beat. They have lots to say to each other and between the pretend play and the wrestling, they tell each other how their day has been. It is such a treat to watch. They typically spend their days loving each other any ways but it is still nice to see how they can get even closer. Makes me miss my brother that much more.
Lincoln has come home with stories and giggles. He also has come home with what we think is as cold. Hopefully he is just picking up new germs. So far no fever. Fingers crossed this is just something he’s gotta build immunity to and that Maya has some memory cells left to get through this without a trip to the lovely 5 star hotel complete with IV antibiotics. But we knew the risks.
We are hoping that Maya will be cleared for school soon too. She asks about the park all the time and it hurts my heart that she can’t go. I want to see my kids swing together again.
Today was a special day…mostly because Maya got to swing for the first time in 18 months. A sweet friend sponsored a CSA basket from Great Basin for us this summer (thank you again Peggy!). The pick up site is at a very wonderful (and nostalgic) house by our home and today Maya got to go with me to pick up our produce. The family we met today was wonderful and kind. The Aloha Spirit was palpable the moment Michelle opened the gate for us. The yard is beautiful and their porch has a swing. With misters! (it was like a million degrees this week so the misters were very welcome). Michelle and Ed fell in love with Maya (and visa versa). It was sweet. Well…turns out they have a tree swing on the side of the house. Michelle took Maya to swing and I once again believed in magic.
Her face was pure magic. No giggles right away but the look she gave me was priceless. Michelle pushed Maya and I watched her swing back and forth and back and forth. It was soothing to her and grounding to me. I think if we all did a little more swinging, the world would be a better place.
Thank you all for everything you do. Thank you for the love, the food, the prayers. The constant reminder that we are not alone. Thank you for listening still. Thank you for the cards. The money. The text messages telling us you are thinking of us. The gifts. Thank you for the magic.
Love is Life.