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Month: April 2017

Just Breathe

April 26, 2017 Uncategorized 1 Comment

April 26, 2017     (Sara)

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.

Today we traveled to Dr. Zucker’s office for…what seems to have turned into the biggest “lab draw” or test this year. Last year had a few lab draws and diagnostics that were impressionable. Of course, the blood sample that Papez ordered that diagnosed Maya…and the results of her second bone marrow aspiration that indicated she was in remission. We had waited to hear if she was in remission and what risk level she was for what seemed like eternity. Those results were excruciating to wait for. Today’s lab draw seemed as terrifying as last year’s.

Last week’s labs indicated her ANC dropped further to 90 and her WBC increased WBC to 2.1. Dr. Zucker was kind and he physically looked at a blood smear to see if he could see any abnormalities. He called me back immediately and offered good news in that he did not see anything strange. We knew that 6mp takes a while to detox from the body so last week’s labs were terrifying but we were instructed to…well to not freak out yet.

Today we got to speak with Dr. Z even though I’m sure he was very busy and we were not scheduled to see him. We were just there for a Budda Button access with Denise. He spoke with us about possibilities and about options. He had not scheduled a bone marrow aspiration yet but that was a possibility depending on what today’s labs showed. If no recovery, we’d have to determine if she was still in remission. And we’d ALL start freaking out.

I’m unbelievably happy to say…we will not be needing a bone marrow aspiration this time. She appears to be in classic blood recovery mode and we will be resuming oral chemo tonight with Methotrexate. 6mp will resume as soon as we pick up the new prescription.

Motherly Assessment:
ANC 640
Platelets 390
Hemoglobin 9.4
WBC 3.5
These are numbers I never thought I would be so happy to see. While she is anemic at this point, RBC take a while to replete. She’s working hard on healing and I know she is well on her way. She continues to eat well, drink, and POOP. Stubbornness is the worst part as she most certainly associates moving her bowel’s with some pretty gnarly memories. We’ll work through this together and until we are healed from that…there is Mira Lax and CALM to the rescue.

The dragon appears to have been struck out of the sky. She hunkered down in her cave but is peeking out for a return to flight. Her armor is strong but even a dragon is vulnerable. She flies fiercely and flies high. Even with a hemoglobin of 5.7…she shows very little signs. She fights through discomfort and spits fire at weakness. We have been humbled and realize that while our strong dragon continues to win, we cannot let our guard down yet. What we can do is breathe. I work on this as much as possible and I hope today’s news helps those of you also holding your breath….exhale. Thank you. We love you. And Love is Life.

Easter Break

April 16, 2017 Uncategorized
April 16, 2017   (Scott)
A very happy Easter to you all. We hope you’re enjoying a bright and sunny Sunday with family and friends. 

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.

The initial numbers were so low in WBC, Hgb, and platelets that the request was made for a recheck– super stat. A few minutes later, the numbers were confirmed: white cells at 0.7, platelets at 55, hemoglobin at 5.7, ANC 190. For comparison, the numbers we would expect to see are closer to (3.0, 300, 11, 1200). . . the hemoglobin result on Wednesday morning was even lower than when Maya was diagnosed. 
All this news would have been far less shocking had Maya shown any signs of being so low. In particular, her red cell count was in a dangerous range– the threshold for transfusion is 7.0, and she was at 5.7. The rest of the day was spent at the infusion center with extra consultations and ultimately the determination that we’d go ahead with her chemo infusion and lumbar puncture followed by a blood transfusion to stabilize her red cell count.
With Maya’s cell counts were down across the board, the most likely explanation is that we overshot her dose of 6-mp and we’ve over-suppressed her marrow. Of course the unavoidable parent fear-response is laser focused on relapse, but that’s not the most likely explanation at this point. (Numbers at diagnosis were similar in some areas, but her WBC count was 28).
We hope to see a better trend over the next few weeks with her off the 6-mp. Assuming that dosage was the cause, we’ll need to carefully reintroduce the drug and return to monitoring cell counts weekly until we’re more sure the stability is not an illusion.
The rest of the week was a swift return to extreme precautions. We haven’t seen an ANC under 200 in a very long time, so it will be a bit longer before Lincoln is introduced to the school. I suppose it’s a good thing he doesn’t know what he’s missing, but Sara and I agree he’s in need of some new challenges. . . maybe just a few more weeks.
Through it all (and amazingly), Maya has been feeling good, playing, creating, singing, and pushing limits. Kids are truly resilient–I can’t even imagine what a Hgb count of 5.7 would feel like, but I guarantee I wouldn’t be doing much of anything normally. We’ll check numbers again next week, but we won’t expect a recovery by then– the cumulative effects of the 6-mp will take about two weeks to clear, so we’ll be patient and positive– focused on Maya’s bone marrow functioning effectively and recovering as it has done each time since treatment began.
We thank you all for the continued support and understanding. So many people contribute in large and small ways that allow us to consistently make Maya’s health the number one priority in our lives. This week has been a major twist in our story, but we’ll continue to adjust and be vigilant. Together we’ll get past this and every challenge to come. 
Thank you, and happy Easter Everyone.

Dear Lincoln

April 1, 2017 Uncategorized 1 Comment

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.