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Just over a year…

February 20, 2017    (Sara)

It has been just over one year and yet I am still in awe of the amount of love, support, prayers, and overall lift we continue to get as a family. I think we thought the support would subside and that by a year into treatment we would…well I suppose I don’t remember what I thought a year later was going to look like. I was barely surviving a year ago. I haven’t returned to those early posts in a many months. I re-read them over the summer and into the fall when I needed to remind myself of where we had come from but now…I am nervous that the memory of where we have been will make me feel weak again.

Maya has changed. She isn’t the girl I imagined she would be at 4. She is bigger than she would be if she didn’t have this in her fate. She is also stronger. She is more nervous and fearful in some ways while more fierce and brave in others. She might cry out because I am in the other room while she is sleeping but she handles a 3/4 inch needle through her chest like a champ. She isn’t who I imagined she would be but…she is so much more. 
I am changed too. I am not as strong in some places nor as weak in others. I have never been a runner but have heard about the “runner’s second wind”. I think I’m there. Almost half way there and I’m feeling like I can make it. I feel like I have been running but that it is finally…finally becoming normal. Weekends while on decadron are challenging (she takes about 7 meds at meal time) but I just look at it like a hill during a marathon. I won’t lie. I day dream more than I should probably. And I probably drink more wine than I should too at times.
Thankfully I have Kaia FIT to help me work out some stress and feel strong but I can’t help but wander at times. More than I think I would had Maya not been diagnosed with cancer. I always wander to the sea. My heart has always taken me to the islands and while we cannot visit at this point…I can’t help but plan a trip. Interestingly enough, Moana comes out on Amazon.com tomorrow (almost half way through treatment). I’m not sure who is more excited. Maya…or me. The sailing and the imagery of the islands…the warmth in that movie make my soul happy. If I can’t be there physically, I might as well feel the trade winds via imagination.
A year ago we were giving PEG aspariginase for the first time (that is the chemo that needed high observation for allergy concerns). Thankfully that is over with. There have been several days and nights that I remember vividly and ones that I truly hope never have to revisit again. Then there are nights that I remember vividly that contain laughter and happiness. Even joy. I hope to always be the type of person who sees the good in life. Even my child’s cancer. Though I could be angry…and at times feel like I owe it to myself to be mad…I’m just happy that my kid is alive. A year ago we didn’t even know she was standard risk. We didn’t know much.
About one year ago, our Go Fund Me was filling with money that smacked me with so much love and support. The money didn’t have anything to do with it. It was just the acknowledgement. The regard for my family. I was in awe of the beauty humans are capable of. I was in awe of the beauty my friends and family were capable of. We have always known we were surrounded by amazing people but…I just we just didn’t know HOW amazing.
About a year ago I was drowning but was saved. I was saved by not just one…or a few…but many. SO MANY people pulled me from the darkness and saved me and my family. Again, the money had (and has) nothing to do with it. It was the pure love that we felt. And that saved us.
I know I have mentioned before but I must mention again – there were days that I found myself empty. Completely empty and dark. My mind was dark. I was once a girl who could meditate a fever down yet a year ago I couldn’t even surround my own child with golden healing light. I was sick too. You see we do not have a religion. Faith? yes but not necessarily a strong religion that we congregate with weekly. What we do have is a church that spreads beyond any walls of a building. That was proven to us time and time again starting about one year ago today.
Maya is good. We are all doing okay. In fact today Maya was great and Lincoln was..two. Maya helped with chores and we all went to Costco. We have absolutely NO IDEA what her ANC is right now but fingers crossed we did not expose her to anything crazy. The roller coaster has not yet come to a stop. Last week, on Wednesday, her ANC was 2900. This is a drastic change from the 520 the week before and certainly well above the 1500 we want it below. We increased the 6MP (the oral meds) by…uh…25%??? My math might be wrong…so who knows where she is at now.
What I do know is that I’m tired of missing out. I took her to a baby shower yesterday and while she isn’t “supposed to” play with a latex balloon…she did. For like 2 hours. She even brought it home and played with it for 45 seconds. Then the baby brother got a hold of it and it did as most latex balloons do…pop. Yet she loved every second. It has been just over a year since she played with a balloon and it made her so happy. And me SO happy. There were many people at the shower and she was pretty overwhelmed. But she could tell that most of them loved her (and me) and while she was more shy than normal, she enjoyed. It felt good. Almost like that “normal life” every one has teased at for maintenance.
So as for the dragon….I think she is sewing her garden. I know…Dragons eat meat, but maybe she is exploring other options. The dragon is grounded and focused. She is hesitant at times though knows she has the strength to fly. The dragon is working on many skill while tending to the Earth and what is supporting her. She is like the young Albatross learning to spread her wings while mom and dad sit at her side. Perhaps the mom and dad sit because of exhaustion. And that is okay. Part of nature right?
As I’m sure I said about one year ago – there are no words to express our gratitude. No poet could have the ability to share words that truly touch each and every one of you the way I wish one could. All and I can say is thank you. From the deepest parts of my soul – from the hearts I have owned in all of my lives prior – Thank you.
Love is life. 


February 8th, 2017  (Sara)

Sometimes I have a hard time finding words that I feel are worthy of my friends, family, and other support system’s time. I sometimes have a hard time finding words, or thoughts for that matter, that are even worthy of my own time. I get overwhelmed sometimes and know that I would just blubber over my words and thoughts in a presumably whiny and obscure way. I find this isn’t helpful for anyone…including myself. I rely on Scott’s strength, comfort, and ability to communicate when I cannot. I rely on my parent’s unwavering support and stamina. I rely on my friend’s and family’s text conversations to communicate. I also rely on the patience of you all. I take advantage of your commitment and allegiance as you wait and wonder what is going on. I don’t mean to leave anyone in the dark. I don’t mean to make anyone wonder. I just, at times, find myself silent. The last month has been more of a roller coaster than expected and while I usually at least have words to express anxiety or fear…this month I found myself silent. Inside and out.

Personally, I have felt as though I have  trudged through a swamp. I am not ignorant to the fact that I have not walked alone. I know very well that I have so many by my side – taking one step at a time right next to me. Picking me up when I trip and nudging me along the way…silently as well as physically. I should get a tattoo (and perhaps one day I will) that says…I am grateful. Because I am. And a lifetime of saying it will still not be enough. I could not do what I do and be who I am…be as strong as I am without everyone in my life. The ones that are near and the ones that are far. The ones I truly know and the ones I only virtually know. The ones that have an everyday role and the ones that are more unfamiliar. I have needed everyone. And I am grateful for you all.

Over the last two weeks we have taken great strides in Maya’s care. Two weeks ago Maya’s liver was still having a hard time clearing and detoxifying her body. We were under the impression that Maya would test positive for the genetic mutation (testing positive for TPMT would indicate an enzyme deficiency or abnormality – see Scott’s post from 1/26). She actually tested NEGATIVE. Interesting for sure. We appreciate Dr. Zucker’s choice to test the metabolites of 6MP prior to obtaining the enzyme genetic test since for some reason…she is not (or perhaps was not) metabolizing the 6MP appropriately. He could have waited to get the test and then chosen to test metabolites…or not. We are glad he did since those came back quicker and proved we needed to consider a change urgently.

We added the allopurinol and she has been doing quite well. Last week her labs came back with the lowest liver enzymes she has had since the beginning of treatment. Dr. Z mentioned her liver felt smaller and while her belly was still a little more…ummm….shall I say…pleasantly plump…than it typically is, she looked less “puffy”. Her bilirubin was creeping down into within normal limits and she overall felt better. Even her ANC was 1340 – ideal.

This week she has continued to feel good. We have been able to ease from the aggressive bowel care and have maintained a couple (to few) poops each day with miralax and prune juice. We traveled to Dr. Zucker’s today for a lab draw. The visit with Angela was a welcome reading session for Maya. She was ever so strong and calm and though her pleasantly plump little body has changed, Angela continues to access her with ease (at least she makes it look easy). I can’t remember the last time Maya cried at her buddah button access…I would need to look back into my Beads of Courage journal. After the visit, Scott and I returned to work and Maya returned to her day with Grandma Bella and Lincoln.

Dr. Zucker texted me around 1:30 today with the results of Maya’s labs: “ANC 520….” Then followed with: “ Everything else looks great. Will have to be careful this next week as we are toeing the line of too low and hold.”

So. Here I am. Still waiting for the “glorious Maintenance” to feel like “maintanence”. I suppose it might be right around the corner but I am afraid that I find myself needing a spotting scope (as Maya calls a telescope) to see the easy part. I’m really ready to get off this roller coaster any time. I’m ready for Maya and Linco to go to school. I’m ready to not worry. I’m ready to go to my friend’s Lularoe and Rodan & Fields parties. I’m ready to take my kids to the movies. I’m ready for playdates. I’m ready to see my children swing at the park. I’m ready for a few spring training baseball games in Arizona. I’m ready for a purse without hand sanis. I’m ready for a pony tail in my daughter’s hair. I’m ready for plane flights to Hawaii. I’m ready to move on from the feeling of “missing out” to the feeling of “fulfillment”. I’m ready when you are Universe.

This is a long road. We all know that. We knew that from the beginning. The marathon is almost a year in and I’m feeling my stamina starting to wane. My dad calculated that around St. Patrick’s day we will be approximately ½ way there. Half way to the end date of treatment. So we can start to heal. And truly move on.

Dr. Zucker has made some choices with Maya’s care that have made a great difference. He cannot honestly (and ethically) say that this new support and treatment with the lower dose of 6MP and addition of allopurinol will yield the previous prognosis of approximately 95% cure rate but…he has reason to believe we are still on a good path. As I have told others, we cannot kill her while trying to save her life so we just have to have faith this will work. Dr. Zucker has stepped into this dragon’s fight and become more than just a warrior. He has become a beacon of light that is now guiding us to our next realm and surrounds this family with faith that we can and will prevail once again. We are honored to have him on our team.

On a much lighter note….little Lincoln turned TWO yesterday. I cannot believe I no longer have a baby…though he still nurses like one at times. In hindsight, a pirate party might not have been the best idea (with an ANC of 520) but I sure am glad we did it. Everyone enjoyed and he felt special. I might have gone over board but I just feel he deserves to feel special too. On Friday we get to go see Dr. Papez for his 2 year appointment. I truly wish Maya’s ANC was high enough so I could bring her…to wash the pain of last year’s annual wellness check from our souls. Oh well. We will have to just see Dr. Papez out in the wild soon.

Thank you again. Love is Life.