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Maintenance Day 1

October 26, 2016 (Sara) 

We have officially started Maintenance. Maya was NPO last night for her lumbar puncture this morning. We made it to the clinic only 3 minutes late and her lab results came back quickly. ANC is at 1017 and platelets are at 270 so we are able to start the next and final phase of treatment. We can now start planning a little more for the future and have an official end date of treatment. We will come to the clinic only once a month for IV chemo. We start “pulse” doses of decadron today – 5 consecutive days every 4 weeks. We also start the 6MP and weekly oral methotrexate tablets. And by “we” I mean Maya but we most certainly fight and endure together.

We have been blessed with 2.5 weeks of a break. There was a wonderful visit to Nona’s and…a horseback ride! We aren’t entirely sure it was “recommended” since we aren’t even allowed to have a real life Christmas tree but – well the look on Maya and Lincoln’s face was worth all the risks.

I wish today felt a little better. I really just feel tired. It might be because I haven’t slept well in a long time…or it could be because I’m tired of feeling stressed. And worried. I’m tired of seeing my child have to go through some things a child should never have to endure. She makes it so easy when she is her usual Strong and Calm. But we can’t always be strong. No one can. Today’s trip to the bouncy bed was a bit scary for her. She was uncomfortable and sad…it made my heart break. They had to infuse the propofol while she was still sitting up crying and the nurse gently guided her to the pillow as she fell asleep squeezing my hand. My heart hit the floor.

My anxiety subsided after some coffee. Maya woke hungry and in good spirits. She got to pick out some super cool Beads of Courage and watched a movie for the rest of the time needed to “lay flat” after her spinal tap.

Our next chore is to pick up all the new medications and set up the Morrison Refrigerator MAR…

Final day of treatment: April 21, 2018
Save the date: sometime that summer…..there will be a party.

Love is Life

Getting Ready

October 20, 2016 (Sara)

I spoke with Angela, the RN for Dr.Salo’s office, today. She is starting to prepare all of the medications for Maintenance. I still can’t really believe we are almost there. It feels just like last week that we were in induction…yet it also feels like that was a life time ago.

We still have yet to establish a comfortable time that we will give Maya her oral chemo (6MP). I really don’t want to be difficult but this stresses me out. Big time. I work with families. My job is to counsel families about their children’s nutrition – feeding the failure to thrive, autistic, severely delayed, medically fragile, and more. I attempt to encourage behavior change, mostly for the parents. I know that in order for follow through to be successful, the family has to see and feel change as comfortable and realistic. We try to build a plan together. There are very few things that I recommend with out asking the family if they feel it realistic…and those are commonly the recommendations that aren’t always followed. Because it doesn’t work for the family…even if my professional opinion is that they are necessary changes.

I just wish the doctor could tell me “there is a vast amount of research that shows giving the med at night is most efficacious”….but she can’t say that. There is just one research article from forever ago that shows a slight difference in timing. So I guess what I REALLY wish she could tell me is “giving the med in the morning is just fine”. There is just already so much change for Maya. And the holidays are coming. And the movie nights we can have! What if we want to stay up a little late and eat a bowl of popcorn? Not always – but sometimes. There are three times of the day that I think Maya could have an empty stomach…and only one of them feels comfortable. If only I could hear what I want to. I don’t mean to be stubborn. I just want something a little easier…for Maya. For me.

We were recently asked if the Northern Nevada Children’s Cancer Foundation (NNCCF) could share Maya’s story in their quarterly newsletter. We’ve never really been hesitant to share the story since, as with any trauma, we don’t want to keep it to ourselves. We’ve been so blessed to have the opportunity to spread awareness multiple times. What is always difficult though, is choosing the information to offer.

They asked us to answer 5 questions. Ummm….but how many words do you want? I mean, we literally have a website that has probably 100 posts or more. When some one asks “how was Maya diagnosed and what happened next” and “how has it changed you life”. My answers are: “bruises, anemia, google, why’d I google, good doctor…I blacked out” and “life flipped upside down”. Or I could write a 100 page book. I don’t seem to have a happy medium or a one paragraph answer. None of this has been simple and I guess I just have too much to say.

Scott was away for most of the week for work but ultimately helped to reel me in a bit. The representative from the NNCCF was kind and let me submit as many words as I did. They, of course, couldn’t publish all of my words but I think they did a great job of telling the story. Our story.

If you’d like to check out the newsletter, here is the link:  Maya’s Story in NNCCF Newsleter

We are heading into our last weekend of no chemo for over 18 months and we have some fun things planned. We are looking forward to Apple Hill, a visit with Nona (my grandmother), and hopefully some great baseball (which for this family means more Dodger wins than losses). No matter what we’ll enjoy.

The dragon’s smile and stamina breeds warmth and strength for our home. Even when she has tough nights with leg pain and restlessness, she wakes for a new day with excitement. She is flying as fast as possible, loves intensely and spits fire as much as ever. She’s enjoyed a play date with her besties and we can’t wait for more outings soon.

I look forward to the day I no longer have to look to her for a reminder to stay strong and calm. I look forward to the return of my own strength and contentment from within. Till then, I graciously accept the reminder from my strong and incredible child.
Love is life.

Love and the Earth.

October 9, 2016 (Sara)

Before dinner we often talk about what we are thankful for. Like a prayer in a sense…or a cheers in another sense. Tonight Maya went first.

“I am thankful for Love and the Earth”, she said.

….there were crickets at our table for a solid amount of time. She won. We had nothing better to talk about. If only everyone felt that way, our world might not feel so brutal right now. Her blessing came at a time of day where the adult in me was loudest. I had prepared dinner, completed chores all day, paid some bills…and had turned on the presidential debates. Needless to say, the innocent kid in me was certainly over shadowed by obligations, stress, and anxiety. The kid in me needed to hear Maya’s comment more than I knew.
“I am thankful for Love and the Earth”.
I am too, Little Love. There isn’t much that I can say I’m more thankful for, obviously. It’s such a simple and yet essential acknowledgement. One that I think is taken for granted most moments of our lives. I am thankful for Love, the Earth, and my wise child.

Maya is doing well. She had her 5th and final dose of the escalating methotrexate as well as vincristine on Friday. This marked the end of Interim Maintenance 2 and we head into just over two weeks of a break from chemo for blood recovery. She has tolerated well, as she does, with some lethargy, leg pain, nerve issues, and head aches. She rarely complains but Scott and I can tell when things are off. Her stamina is incredible.

Friday at the clinic went quickly. Scott had taken her in for a lab check the day before (since the escalation in dose requires her to meet the lab parameters of an ANC above 750 and platelets above 75). They had already made the chemo and Maya’s access was quick. Some tears appeared only when Maya got her flu shot. It’s so predictable – anything out of the ordinary is cause for concern with the dragon. While she cried at the shot, she recovered and moved on.

Some tears welled up into my eyes as well at that visit. We commonly talk with the doctor at each visit. She looks over Maya and answers questions and reviews Maya’s medications. Since the next time we see Dr. Salo will be on day one of Maintenance…we had some questions.

We have heard Maintenance is the “easiest” phase. Mostly we have heard this from the physicians and RN’s or Case Managers. Of course it’s the “easiest” phase….for them. They will see us once a month. There is more “homework” than anything. I have been monitoring and assessing our family schedule (or some version of schedule…or some vague desire of schedule) because we are about to hit a very rigid phase. One that lasts for over 18 months. Maintenance. It sounds innocent. It sounds like a dream compared to Induction. But it has more oral medication than almost all of the other phases. One of which requires an empty stomach and the only research (completed 50 years ago) shows that it is best to be given in the evening. 6MP has to be taken 2 hours after a meal and an hour before a meal. No milk or citrus can be given anywhere close to it either. Oh and a missed dose can be destructive to Maya’s prognosis or cure rate.

So – at what point is my child’s stomach empty? In the morning. Right, but the only research about this shows that it is most effective when given at night. I asked how important this is with the doctor. She is smart. She is saving my child’s life. But she has no idea what it feels like to wonder when I will safely (and efficiently) give my child her chemo with out interference of food. The doctor mentioned after dinner. After dinner? Do you know what its like putting dinner on the table on time? Some times we can have dinner on the table at 5:30 so she can be done with any food at 6 (a miracle). She could take her chemo right before bed at 8 (even though we try to get her to bed at 7:30). But with no milk. She is used to milk before bed. It’s part of her day. And what if dinner isn’t on the table till 6:30? Then chemo at 9? Then we discussed after nap. The first time she was on 6MP she would sleep for 2 hours – perfect. Wake up, take the chemo, wait for 45 mins to an hour, then dinner. Well – now she sleeps (if we are lucky) for an hour. And it is a bit variable. There is no “easy” answer.

Dr. Salo could tell my eyes were welling with tears and that I was getting upset. She put her hand on my leg in attempt to comfort me. She is a very interesting person. Not a cozy person in my opinion, but as someone who works in hematology and oncology, I don’t doubt there is a need for emotional disconnection. I think she did her best at trying to make me feel better. She knows I’m educated. She knows I’m realistic. She hasn’t seen my emotional side and I imagine I threw her off a bit. She said “don’t make this harder than it is, this is supposed to be the easy phase”…I really start crying. I wanted to scream. I wanted to holler. I feel terrible saying this but…I wanted to shake her. I wanted to laugh with disgust. I didn’t want to cry in front of her.

She hasn’t seen me cry before – maybe on the day she told us Maya was Standard Risk- but those tears were different. These tears were frustration, inconvenience, pain, worry, confusion, wonder, torment, suffer….fear. I’m scared. I’m scared to death. I’m frightened and get sick to my stomach at the thought of relapse. Giving Maya her medication at the right time, every day, on time, safely…contribute to her success. Her survival.

“…Harder than it is”. There hasn’t been anything harder than this. She doesn’t get it. Luckily, most people don’t get it. Do I explain it to her? She’s does so much for my family, I would hate to offend her but it felt like she knew nothing at that moment. We finished our conversation and I said “thank you”. What else could I say? Maya asked if my tears were “happy tears” and I couldn’t lie to her. All I could say was ” not this time…mommy is just a little scared but I will feel better soon, you make me feel better”. And she does.

Denise, the nurse, spoke with me also. She is kind and caring and understanding. She reassured me that we will be great and since we care this much about it…it will be a priority. And it needs to be.
I have nursed my children and been their sole nourishment for a time. It was relatively easy. It was as natural as anything and part of my Love for them. They continue to depend on me in ways that I have been prepared for since…well forever. I am a mother. I am a great mother. But even 9 months in to this…I don’t feel prepared for any of this. I know we will get through this. For some reason I know it. Scott and I have been through fiery hoops together. We’ll hold each other through this one. This will feel better one day. I am told it will feel like a routine. But Friday…and today – I feel scared and vulnerable. Unprepared for any of this.

Maintenance will include: oral 6MP daily, 5 days of Decadron each month, IV vincristine each month, oral methotrexate once a week, lumbar puncture with methotrexate every 3 months. Her labs will hopefully be stable. No massive drops aside from a likely drop in the first 3 months of maintenance. They aim to keep her ANC between 500 and 1500. If her ANC is 1500 for 2 months in a row they will increase her dose of 6MP since a constant depression is the design.

Aside from my break down and lingering fear, things are fine. We are enjoying the warm fall weather for now and trying to find some normalcy. Maya’s hair is growing wonderfully. She still looks like a sweet little albatross chick but I love sneaking a peak of Lincoln rubbing his cheeks on her head. She is so soft and Lincoln is a sucker for anything soft. It melts my heart.

Maya’s labs were great. ANC of 1300, Hgb of 11.3, WBC at 3, Platelets of 377.
As my confidence wavers, Maya the Dragon soars. For the most part, she is flying around her kingdom only swooping down for moments of rest (or some snuggles and warm milk). She inspires me to find my strength and proves we can thrive. When I look her in the eye, my fear subsides. She is rebuilding her castle and ruling her land triumphantly. This child is magic and this world is better because of her.

Love is Life