May 10th, 2017 (Sara)
Two weeks ago we started back on a 75% of the originally prescribed dose of 6mp. Actually, since we started back on tablets rather than a compounded solution, Maya is technically on a 71″ish” % dose (250mg 6mp) of what the typical ALL maintenance kid her size and weight is on (which is 350mg 6mp). A reminder that she is also on Allopurinol to help her metabolize the 6mp more efficiently for our goals of “mylosuppression” (bone marrow suppression) rather than the liver toxicity build up. Two weeks ago we started back on the increased dose even though we all (DrZ, Scott and I) think it is too high of a dose, the doc felt bound by protocol. We trust him and so two weeks ago we started a dose close to the one that wiped her out. Well. One week ago, Maya’s labs came back almost beautiful; while her hemoglobin continued to be 9.7 her ANC was 1010 and other numbers looked ideal. We were cautiously optimistic and made no changes.
Today we went for our monthly clinic visit and IV Vincristine. Maya got to see our super star nurses and other staff that she adores. I feel bad that I didn’t have the brain power to bring cookies for Nurses Week! They deserve far more than cookies… but I have learned during this experience that most nurses really like cookies. I will remember one day. Till then, I hope our nurses know that they mean the world to us and we wouldn’t be able to handle this without them. Our nurses help save Maya’s life while enriching her life. They offer support as well as independence and education at a time when she cannot go to school. Clinic visits ARE her school right now. The clinic IS her playground for now. And she gets new experiences each time because the nurses are able to surrender and trust her. Thank you. From the bottom of our hearts, Thank you.
Speaking of nurses…independence and education…Maya pulled her labs (practically on her own) today. Mary accessed her buddah button (aka port) but Maya helped with her flushes as well as pulled back the “waste”. Then she took the vials and pressed the “squishy part” into the needle and watched as the blood entered the vial. When Mary told her to pull it off, she did. Then she inverted it a few times just like the nurses do. I am so happy I actually caught it on video. I will post it on the front page. It is awesome.
The good news is that we are not still there at the clinic getting platelets or packed red blood cells for lunch. We are home and heading into nap time.
The uneasy news is that we are still flying through a bit of a storm.
While 3 data points are typically needed to determine a trend, today’s counts look to indicate yet another drop when compared to last week’s numbers. Again, we are on the increased dose and none of us were all that “shocked”…although no matter how well prepared I am or how much I expect something like this, the varying numbers make me queasy.
Liver function: perfect.
The WBC count of 1 made my stomach tight since a number that low could easily indicate a much lower ANC. Her neutrophils must just be thriving this week. Yay for that.
So what does this mean. DrZ is still thinking. Scott and I assume that he will be calling to let us know of a dose change – perhaps to 200mg or 225mg 6mp (57-64% of the original dose…perhaps lower now that she has finally lost her decadron/induction weight). I suppose the percentage really doesn’t matter to me aside from the fact that most “parent blogs” discuss “percent of the dose”…it’s all about getting the right amount of medicine in to do its job with out killing her. Since we are on 50mg tablets now, we can’t really get to a nice, clean percent like 75% or 60%. With a compounded solution, it is easier to administer 37.5mg each day for 75% dose but it also introduces the possibility that the solution isn’t completely mixed. Tablets eliminate some of that variability but also eliminates easily discussed calculations. None of this is “clean” or “easy”. It has sort of been messy from the beginning. After all…life is messy yeah?
We are grateful to have a doctor who listens. Who asks questions. Who might not know all the answers but some how finds the ones we need. And while he is rigid with some protocols, he is open to truly see Maya…not a typical ALL child. We are grateful that there are amazingly smart individuals researching the addition of Allopuriol to help with 6mp metabolite shifts. We are grateful for healthy livers. And for incredible feats in modern medicine. We are grateful for our nurses. We are grateful for dinners that friends make for our family. We are grateful for Grandparent’s and other family and friends that play with our kids and keep them happy. We are grateful for each other.
The calibration continues but we are hopeful. With each lab draw the perfect dose of 6mp feels closer. While the winds of the storm test the dragon’s flight, her momentum is consistently forward. She is strong. We are strong. Because of you…our family is strong. Thank you for your continued support and love.
Love is Life.
Through out this journey, there have been times when I have had to remind myself to breathe. Just breathe, Sara. You have to breathe. I have held my breath more times than I would like to admit during this journey. And for the last two weeks…I think I have taken sips of air while holding all that I have in. Hoping. Praying. Wishing. Visualizing. Meditating. Holding on to the idea that my little girl is still in remission. I feel like I couldn’t really quite catch my breath.
On Wednesday morning we headed back to the infusion clinic for Maya’s quarterly LP and chemo. Things had gone smoothly over the past month– we had a terrific vacation to Arizona and were making final plans to get Lincoln into the WNC Child Development Center. Maya had been feeling good, and we were all starting to enjoy the stability, so Wednesday morning’s labs came as quite a shock.
April 1, 2017 (Sara)
Dear Lincoln, tonight was a very different night. Tonight, I asked your father to put you to bed. I’ve never asked that of him. I have always wanted to be the one to settle you in and drift you off. For over two years we have been each other’s bedtime story.
But tonight, you are crying. I’m crying. I’m sad. You’re mad. You have been through so much change in your short life and I never wanted to say goodnight this way. I wish I could nurse you and let you suckle for as long as you wish. I wish I could sooth you and let you snuggle against me and fall asleep as your brain and heart dance to…. “once upon a dream”.
I wish I could be everything for you. For always.
The World Health Organization says two years of nursing is best for baby and mother. I know why. I don’t need research articles to tell me why it’s good for us. I know because I’m your mommy. I have witnessed the reasons first hand and I am proud that we have acccomplished that journey.
As I write this I hear you cry for me and sing out to distract and soothe yourself. My heart is pounding because I never thought I would have to make this choice.
I remember telling you, when you were about 7 months old, that I’d let you make the choice. I’d nurse till you were ready to move on. I didn’t mean to lie. I just didn’t think you’d nurse this long. I thought you’d get too distracted. When you were 12 months you started to show signs of distraction and I thought I’d be lucky to make it to 18 months. I didn’t think 24 months was a reality and now you are 26 months. When Maya got sick I think we both clung on even tighter and thought we’d never let go. I wish we didn’t have to.
I have recently come to realize that you may not be the one that will choose to stop nursing. It’s a difficult choice so I will take that burden from you. It has been a very difficult decision and it has taken time. No matter when we stopped nursing, I knew it was going to be hard but I certainly didn’t know it was going to be this emotional. Choosing to take comfort away from you and milk that I felt helped offer immunity to you (as well as Maya) is something I never wanted to choose. Perhaps it’s this difficult because you are likely my last child. After being pregnant or nursing for 5 consecutive years…the idea of my body sustaining only itself is a strange and somewhat lonesome concept.
I hear you fall asleep with your daddy and you might feel a little uneasy but you are safe. He loves you just as much as I do and I know that he would give anything for you. All he wants is your ease and your happiness. You are his world as much as you are mine and while he can’t offer milk…his Love will give you Life forever. It has for an eternity.
If I could, I would give you everything. I wish I could be everything you need. I was that once when you were born but I cannot be that forever. Just as your sister challenged me to be the best mother I can be…you have challenged me to be the best woman I can be. You two help to make me the best human I can possibly be.
I believe I am on a path…that WE are on a path that is dividing. We are not dividing because my Love for you is waning. It is because my love for your is growing stronger every day.
You are growing stronger. And just as YOU do not belong to me…I do not belong to you.
Life and motherhood doesn’t make it easy to understand our separation. The conflicting hormones that are produced as a side effect of making milk to sustain life makes the choice to wean seem impossible. It makes the choice to wean feel unnatural. Motherhood made me feel as though you (my children) are part of me but I have come to realize that Life is more important than the Ego or the Id. Life is more forgiving and more humble than that. Your father and I started our marriage knowing that we are stronger together than we ever would be apart. That was made very apparent early on in our relationship and while we tried for a long time…we tried very hard for a long time to ignore that…we ended up giving in to chemistry and accepted the affinity we had to one another. That union has created two forces that will challenge this Earth’s reality. You and Maya.
I know this separation is difficult and it has only just begun. I will nurse you in the morning and you’ll feel better. I will feel better. But soon we will nurse less frequently and you’ll get distracted more easily. You will get more independent and confident. And I will too. We will still snuggle and we will not lose a physical closeness…it will just change. I will forgive myself for feeling like my confidence as a mother has been hiding behind my breastfeeding relationship with you and that you won’t “need” me any more. I will move past the feeling that you only needed me for milk. I will make a transition to knowing that my Love for you is enough. I once heard, “If nothing ever changed, there would be no butterflies. “
You won’t remember these days or the snuggle times that we have shared… but I will never forget them. Thank you my little Love. Love is Life, Goodnight.
March 25, 2017 (Scott)
After last week’s solid lab results, we finally felt comfortable enough to hit the road for our first vacation in a while. On Monday evening we loaded the Armada with everything we’d need (and more) and headed out of town. Fifteen hours later we pulled into Uncle Chris and Auntie Amber’s driveway just outside Phoenix. The sunshine, warm temperatures, and backyard swimming pool have been welcome distractions– thank you Auntie and Uncle for letting us take over your house… I promise most of the damage isn’t permanent.
Already we’ve had two ‘pool days,’ seen a Dodgers spring training game, and visited a butterfly sanctuary. Sunday we’ll check out the zoo and hopefully sit by the pool a bit more before heading home.
Maya and Lincoln have been excited to go out and do some new things. The car rides have been pretty easy, and they’re both trying hard to sleep in their own beds. Maya has stayed in her bed each night aside from one bout of leg pain. Linco will sleep all night without trouble, but
unfortunately he likes everyone to be awake by 630am.
As always we’re cautiously optimistic that all systems are normal and our reasonable precautions will protect us as we’re away from home. The kids seem grateful for a new environment to explore with new characters and situations each day.
We are so very thankful for supportive family and friends, for new opportunities, and for the courage to embrace them all. We cherish these moments of fun, humor, warmth, carefree living; and we are mindful that there are always others who don’t have it so well. We pray for peace, strength, and good health for all those who struggle and for the caregivers who never quit.
March 15th, 2017 (Scott)
ANC 1290 today! (Ideal range 750 – 1500).
All other lab results look great too.
We’re cautiously optimistic that this is the start of the easy maintenance phase we’ve heard so much about.
We hope you’re all well and a little extra lucky this week.
Until recently, I had no idea that I could gravitate to the negative very easily. I don’t think it’s years on this Earth. I don’t think it’s jadedness. I don’t think it’s even the fact my kid was diagnosed with cancer one year ago. I think there might be times when my naturally honed optimism just needs a vacation. I’m always the first to smile. The first to see the positive. To laugh. I thrive on laughter as much as I do energy from food, nourishment from water, or vitamin D from the sun. I have a strong affinity to the wonderful and convivial parts of life and this world. Some of it comes from deep within my soul while a good part of it from my family. I was raised in a home where the echoes of memories are that of giggles that turned to tears of joy and gasps for air between bellows.
It’s not surprising that my optimism has come to something that resembles a strike. It feels taken advantage of. I have leaned on my optimism continuously for my entire life not really giving it the appreciation it deserves. My optimism has a face of a dragon but it is tired of holding me up. Its tired of keeping me going. Of keeping me strong and calm. My optimism appears to be weak… at least at this point and I shall just accept it for now. I have full faith that these last several months of my consistent reliance of my optimism have depleted it. Over the last few weeks I have attempted to pull my positivity from the darkness but I believe it needs a real rest. I need to give it some time to regain its strength and return to me with full force. I will respect that. And it will return.
Today we had labs. And while the numbers came back in a more positive range, I felt numb. The doctor said “do a happy dance” and I felt “meh”. Scott has a wonderful outlook on the numbers and when he asked me what my thoughts are…they were not positive. I am realistic that an ANC of 1550 is likely ideal at this point. We are due for chemo in one week and if she were to be 900 today she might be too low to give chemo next week. I get it. I’m just not super stoked. I’m not on the high that I would have thought I would be. We are on the right path. We are getting there. I just wish it didn’t have to take so long. 1550…that is 50 units above the range that keeps her prognosis as good as can be expected. 50 units to the best possible outcome. 50 units to the sweet spot…and some respite to my anxiety about relapse.
I am a strong believer in the Law of Attraction and while I consciously push any negative thoughts from my brain…I feel like I can’t keep up. Considering relapse is as threatening to me as pondering Space or the vast unknown. The unknown scares the crap out of me. And I’d rather not really think about it. But then it always pops up. Usually I’m protected by my optimism. I imagine my optimism looks something like Joy from Inside Out….but with pink hair. No green. Yeah green hair and bright blue eyes. And pink skin. But my optimism usually saves me from fear. I can always talk myself out of feeling bad. Unless my optimism is on a vacation. Then I need to go on vacation too.
Motherly assessment: ANC 1550 (oh child…could you not have made it to 1400?!?). The range we desire is 750-1500. That is when the risk of relapse is lowest. I don’t have the other numbers aside from knowing her platelets are good, her hemoglobin is good. At the point of communication with Dr. Zucker, her CMP (metabolic panel) wasn’t available yet but since I didn’t hear back, I’m assuming her liver function is good too. She is pooping like a champ. My mom recommended CALM – its a magnesium supplement and I think helps a lot. Though since we changed other things at the same time, its hard to know what is helping…but we’ll take it nonetheless.
Her energy. A+
I have told people…I can handle anything as long as she is feeling good. And she is. She wants to play, run, jump, ride bikes, go outside in the freezing blizzard, dance, do yoga, and breathe fire. This child of mine is good. She is SO GOOD.
Lincoln is also so good. He makes jokes and keeps us laughing like I could have never expected.
In case anyone is interested in Pelei…the great Poof. She’s also great. 12 ½ years old and still dreaming of playing ball and swimming in Tahoe.
We are all good. Optimism or not, we are good. Maya the dragon is fighting a hard fight and making it look easy. We are making friends and helping each other get through this. My optimism will return soon…I know it will…It has been a year and just needs to pull over for a break while running this incredibly long, hard, intense, marathon.
Thank you all. From the bottom of my heart, thank you.
Love is Life