Month: July 2016

Jul 7, 2016 1:13pm (Sara)

I can usually tell when we’ve been too quiet and that it is time to write an update. Text messages, Facebook messenger, phone calls…they all start flowing in. It is truly a wonderful feeling and a reminder that Maya (and this family) has such a vast support system. It reminds me that we are not going through this alone and Maya’s warriors are right behind us. The fact that our Caring Bridge journal has over 8200 visits is proof of that with out doubt. So thank you all for reminding me that we are loved.

Scott’s words last night were perfect. There isn’t much more of an update I can think of. Tomorrow we will get her labs drawn to find out where she is at and if she needs any blood or platelets. We are going to go to the clinic rather than the local LabCorp just in case she’ll need a transfusion.

One more dose of decadron. One more dose. It is absolutely amazing watching a three year old eat more than what an adult woman can eat. I had a discussion with a colleague yesterday and she helped me to understand what might be going on. When children go through trauma and they lose control, they (just like all of us) find ways of coping. Stress eating is a real thing and when you couple that with a steroid that increases appetite…a three year old can pound a whole bag of popcorn and 1 and a 1/2 bean and cheese tortillas.

I know there is some humor in the fact that Maya can eat an intense amount and that there is some basic survival to it as well. It all makes sense to me but…it still terrifies me to watch. I can’t tell if it’s the scared mommy in me or the registered dietitian that cringes at all the salty foods she is craving and mindlessly consuming. Witnessing her put piece after piece into her mouth at 3am and then screaming when I try to distract her from it is difficult. But as simple of the idea it is, my colleague helped me to realize that this could actually mean she is coping. She is doing what she has to do….to survive and deal with all this messed up stuff she is dealing with. And she’s doing it successfully not matter what my opinions of her food intake. It is difficult to watch but I am hopeful with this new outlook that Maya is very normal. I am hopeful that she will come out the other end of this just as happy and mentally healthy as she was before.

Maya’s friend, Alicia the Unicorn, has started the part two of Delayed intensification. She was admitted to the hospital for her long infusion of chemo and observation and I think she is now at home or close to it. Her mom, Heather, and I have become friends and we check in on each other often. I am so blessed to have my virtual friend and always love the pictures and videos her family sends. The recent pictures of Alicia are very No Hair Don’t Care. Little thing lost her hair very quickly and I think it is helping Maya cope.

Last night I had to flip my pillow over because there was so much hair left on it from Maya’s earlier nap. Needless to say she is well on her way to No Hair Don’t Care…and we just keep reassuring her that her head is so super cute.

Thank you for your wonderful support. Thank you for your thoughts and prayers and love and light and strength.

I found out this morning there is yet one more local boy diagnosed with B-ALL. I don’t have details but my heart is breaking for the family. We are so lucky this is not a death sentence but man…it took a long time till it stopped feeling like one. I have offered my information via the acquaintances we share. I hope they reach out. And if they don’t, I hope they have even half the support that we do.

There were times when my mind and heart were not dark, they were empty. I was empty and yet you all helped fill me up again. I wish that for everyone. Thank you.

Love is Life.

Jul 6, 2016 11:03pm (Scott)

There’s no doubt this phase is tough. Three doses of the red devil seven days apart compounding their effects with a chaser of steroids and a few other drugs that play quieter supporting roles, and this adds up to one pretty shitty week for a three year old. Her belly is starting to protrude again, there are issues with constipation, there is intense hunger, and her moods are delicate. Sleep is fleeting and interrupted by everything in the previous sentence. But here’s the good news… tomorrow is our last day of steroids for a while and will lead us into a week long break from chemo. In this phase we’re thankful for Netflix and tortillas and popcorn and air conditioning. And I’m thankful for the enduring toughness of this three year old little dragon girl whose spirit powers through it all. She makes this phase look like a garden variety belly ache, and I am in awe.

Maya makes things easy on us–takes her meds without fighting or complaining and tells us what she needs and how she feels when we’re concerned. But this phase is hard on Sara and me. I spent today at home with Maya and Lincoln (supported also by an awesome force of nature known as Grandma Bella), and watched her minute to minute efforts to power through discomfort, restlessness, and frustration. I carried her around a fair amount as her legs have lost some strength, and I pulled bunches of her hair off my shoulders after. There are more hurdles ahead–making counts to move on and a trip to Oakland for a few nights for observation and a slow infusion of more drugs. But there is light there too, just ahead and growing. We’ll soon clear the end of DI and revisit the smooth sailing of interim maintenance II. Then it’s preparation for the long, repetitious maintenance phase and the ringing of bells.

We are so thankful for the caring support, and the endurance of all who’ve continued to bolster our spirits and cheer our progress. Thank you to Linda, Dre, and Everyone at the WNC CDC for the continued fundraising efforts; thank you to Marian, Frank, and the Carson City Elks Lodge #2177 and friends for the generous donations, warm thoughts, and a beautiful quilt; thank you to Cousin Mikey for the talent and love infused in the bonfire funds t-shirts (available only until July 11th).

I’ve told Maya at least twice today that there’s just one more day of steroids, and then she can start to feel more normal again–she always nods in trust and understanding as she breathes through the weird jitters and twitches that highlight the steroid’s ever increasing list of side effects. Just one more day–two more doses and you’re done… and I’m certain she’s not the one in that conversation who really needs the reassurance.

We’re getting there. This is a necessary part of the journey. And we are so thankful for your thoughts and prayers and kind words.

Thank you.

Jul 1, 2016 11:36pm (Sara)

Maya received her third dose of Doxorubicin (DOXO) yesterday. Hopefully, this was her LAST dose of the red chemo. This whole phase is called Delayed Intensification (aka. Red Devil) but we are thankful that there are only three doses of the Doxorubicin. Doxo has a “lifetime” dose and we will need to remember the amount that she has been given. Add it to the list of numbers we need in our lives. We’ll need to remember and keep track in case she ever needs it again in her life. Along with cardiac monitoring, routine blood work, monitoring for other cancers, this responsibility will ultimately be passed down to Maya. Doxo can lead to diminished cardiac function (leaky valves and such) so if she has to fight a battle like this in her future, we (or she) will need to inform the oncologist of how much she has been given so far. Thankfully because she is “standard risk ALL”, she isn’t given too much. This saves some room in case she needs more rounds later on down her road.

The second part of Delayed Intensification has its own cast of characters that will wreak havoc on Maya’s kingdom but we shall be introduced to them in a few weeks. For now, Maya is just a little bulldozer. How weird that at yesterday’s appointment, we actually expressed some concern that she was feeling fine!??! I mean…she isn’t feeling 100% normal but with all the chemicals she is clearing, we were certainly expecting a lot more of a mess by now. Dr Salo mentioned that (of course) all kids handle the different phases in their own way and while some kids show signs of depletion by the second week, others might have another good week or so. We are truly holding on to that and trying to enjoy this time as much as possible.

Maya has her challenges. She’s three and a half. Her interaction with her peers was dramatically eliminated, her baby brother became her best friend (and some times her enemy), her parents are ALWAYS around, she has been given more toys than any one person can count, and she has been surrounded by grandparents that give amazing supportive and compassionate attention almost every single day. With all of this…she has quickly become spoiled. It happened so fast. This all happened so fast. I have barely found which way is up in this crazy wave that consumed my life…and yet she adapted to the “new normal” so fast.

I know I have expressed concern about this in the past, but there is definitely a fine line between consoling my sick child and teaching moments. She is fierce. Any one who has spent time with her knows that. She is strong. This is evidenced by each visit to the clinic and tearless port access and lumbar puncture. She is also extremely stubborn. We have established that this can be a great character trait (ugh). She is also sick. She doesn’t know how to handle the “not feeling goods”. She watches more TV than I would have ever condoned before cancer. That is one thing. Its the screams, the tears, the tantrums, the fits….the “but I want it”s. I know I am not alone when I say….it can make a mommy go crazy! But I’m also sort of stuck. I want to discipline. Discipline is important to me. To my family. To my children’s future. You’d think it would be easy to determine if your child is throwing a fit because of her natural, innate, stubbornness or if its their inability to communicate how they really feel. But I can’t. If someone has any ideas…I’m open.

Overall, Maya is doing quite well. Yesterday’s clinic visit went very well and it always amazes me how much Maya enjoys it there. Even when the night before she concludes “that is not my idea” when discussing how we get to go to clinic the next day. She always shows up and makes every one feel good. From her smiles to strangers in the elevator that exude from her eyes, even though they are shadowed by a hello kitty mask, to the phone that lets the staff know we are there (its a locked unit)….”MAYA’S HERE”. We laugh every time because she hollers it so loud that she probably doesn’t even need the phone. Ty (the wonderful woman that answers the phone) has one of the best laughs I have heard in a long time…and she always finds a place during the visit to fill my world up with it. Even if its the laugh I hear while putting down the phone and entering the infusion clinic.

She had ZERO tears during her buddah button access this time. Sometimes she just chooses Strong and Calm…even she doesn’t have a reason. We met a new friend, “V for Victor” there this week too. He has a very different battle than Maya but he is very much so “no hair don’t care”. He has just returned back to Nevada after a whole year in Oakland. My heart goes out to him and his family as they trudge through this intense time and as they find the answers they need to move forward.

Maya sparked up wonderful conversations with her new friend while they were both kickin’ it on their tricycles (the play room has some awesome toys). He’s a little older than her but they hit it off. In fact, they were planning their own play dates with in 10 minutes of knowing each other. “You can come to my house, I have a lot….I mean A LOT of trains” says Victor. “You can come to my house too! I don’t have any trains, I don’t think, but I have a lot…A LOT…of toys”, says Maya. As painful as it is to see another child battling cancer, it always makes Maya find a little more “normal” in her life. It helps. In some weird way it helps me too.

We always end up staying longer than we think we will. Even when things go smooth and we can get out of there. Even now that we have an amazing spray that helps lift the bandage adhesive off so it doesn’t take 15 minutes tearing the tegaderm away form sensitive chemo skin. Even when we can leave after a short infusion day, we find ourselves standing in the hallway talking with the amazing nurses and staff members. Brittany, Mary, and Ty made us feel like they didn’t have anything else to do but to chat with us. We know this isn’t the case but it made us feel good. We give them a few more pieces into our worlds and we get a few in return. This all helps.

Motherly assessment: WBC 2.4, Hgb: 12.3, Platelets: 198, ANC….310. So aside from the ANC, she appears to be good. Her liver function and hydration look good and she feels “good” although she is definitely more pale today. It is truly unfortunate that the way she feels isn’t an indicator of her immunity. 310 is low….but you certainly wouldn’t guess it by the way she acts. She is pooping (yay for abdominal massage every night). She is still eating well. She is just plowing through this thing so far like a bulldozer on some sand. She doesn’t feel awesome but she certainly isn’t terrible. She requested a hair cut. After seeing her buddy Alicia’s (the unicorn) haircut, she wanted her hair “all off”. I talked her into a more moderate cut. We all like it for now…though we anticipate the full force exodus soon. More steroids started today. Please send us strength to have patience to deal with the fierce, strong willed, sort of feeling crappy, deca-dragon of a three year old. Maya is flying high is holding pattern for now. She is catching her breath and making sure she is ready to attack when necessary. I believe we are experiencing the calm before the storm for now.
We cannot thank everyone enough. There are not enough minutes in my life, breaths in my body to thank everyone the way you all deserve.
Love is Life.