Friday, December 18, 2015


This week feels like a bad dream. I'm still waiting for someone to wake me up. 2015 was such an incredible year for our family. I would summarize it all here, but I'm pretty sure you saw the hundreds of photos I posted on Instagram. So you know. We were giving the good life. There were carefree mini vacations. There was me fulfilling my dreams of becoming a yoga teacher. There was immeasurable joy. Yes, there were more trips to Doernbecher's than we would have preferred. Yes, there were surgeries. Yes, there was bad news here and there. But I simply could not have imagined 2015 coming to an end the way it is. How are we back to the place were I am sitting by the phone, holding my breath, with time standing still, waiting for that news?

I like to sugarcoat a lot of what I write. It is one of the ways I choose joy amidst adversity. But I'm finding it really hard to sugarcoat things today. I am really upset. Just as quickly as I entered the first stage of grief, denying that any of this was actually happening, today I have woken up angry. I'm angry that I had to ignore Ezra's cries yesterday when he kept asking me for a snack on our car ride to Doernbecher's because he had to fast. I'm angry that we had to ride the elevator up to floor 10 where the oncology clinic is. I'm angry that the nurse who took the stats wasn't overly friendly when we were getting admitted. I'm angry that we didn't get to see our regular doctor. I'm angry that the doctor was condescending when I tried to tell him that some of our other NS/JMML friends have experienced these kind of setbacks. I'm angry that I had to see Ezra's blood dripping onto the floor of a hospital room again. I'm angry that it took both Josh and me to hold him down as he hysterically fought the iv therapist. I'm angry that nothing we said or did could calm him down. I'm angry that the anesthesiologist was making annoying jokes while Ezra was screaming. I'm angry that I had to stay until sedation settled in and had to watch his tiny body go limp in my arms. I'm angry that Ezra had to have a huge, hollow needle shoved into bone for the third time. I'm angry that we are re-experiencing our worst memories and our worst fears. I'm angry that all of this is happening the week before Christmas. I'm angry for not being able to sugarcoat things right now.
I'm not angry for being human, though. I am strong. I am brave. I am mostly joyful. And I am human. So I'm going to go ahead and give myself permission to be human today. I'm giving you permission to be human today too. I'm also giving you permission to walk on the other side of the street if you see me today...or to at least take everything I say with a grain (or a bucket full) of salt if our paths inevitably cross ;)
If you don't know me very well and reading this makes you feel like you should call a help line on my behalf, rest assured that I am in fact quite emotionally stable. I do not have a natural tendency to stay angry. I have a really good sense of humor and I am very quick to forgive (even myself, most of the time). I write because it is therapeutic. When I started writing this particular post I was in tears, requesting that Judah go get mama some tissues. And by the end I literally have a smile on my face - mostly because I'm amused about the number of times I used "I" in the paragraphs above. Like, get over yourself already, Elisabeth. I'm also writing this because I kind of want you to have a glimpse into the reality of what happened yesterday. When you ask how I'm doing or how it went, this is how it went. This is real life. It can't all be sugarcoated...even at Christmas. Please give me a little extra grace if I'm not smiling as much as usual or seem like a little bit of a debbie downer. Yesterday was freaking hard. I need lots of grace. Thank you in advance :)

What is a bone marrow biopsy & aspirate on a child like? More info HERE


*Originally posted 12/15/15*

You would think by now we would have this medical rollercoaster thing figured out. But there are so many twists and turns that we always seem to be one step behind the Noonan Syndrome learning curve. The last 24 hours have been crazy. Here's the summary: Ezra got sick this weekend, and after his fever held on for four days strong, we brought him in for a checkup yesterday. At that appointment we learned that his spleen was bigger than the last check up and that there were abnormal cells found in his last labs (the ones we had done at Doernbecher's a week and a half ago). There was talk that his JMML was returning. There was hysterical crying, hyperventilating, shock, fear, and all the feelings. Then logic and levelheadedness set in and we decided to wait to hear from oncology before jumping to any conclusions. There were hours spent anxiously waiting by the phone today. There was *the* phone call from our oncologist (who we thought we said goodbye to for good over a year and a half ago). Here's the gist: she's not freaking out but she's concerned and she wants to get us in for a bone marrow biopsy as soon as possible which turns out is this Thursday. It could be a fluke, it could be a virus, it could be leukemia. There's part of me that is in disbelief that I am even typing this right now. There's another part of me that always knew something like this could be a possibility (a very remote, nightmarish, and worst case scenario possibility, but a possibility nonetheless). There is no precedent or protocol for JMML returning after remission in an NS patient that we or our oncologist are aware of - I have spent a good part of the day reaching out to my Noonan Syndrome family and emailing and getting the ball rolling to contact other oncologists who have had NS/JMML patients.

We are holding on to the hope that this is just another *weird NS thing* that we will have to deal with and NOT cancer. We ask that you hold onto that hope as well and that you would please pray that we can keep our heads straight until Thursday. We are devastated to even think about Ezra having to undergo this procedure (for the the third time), or to even have to walk into that oncology clinic again as a patient - but we've we survived all of this before. We've come out on the other side stronger, and braver, and better...and we know we can do that again. Ezra is a fighter and this is merely a bump in the road. Please pray for him and send lots of love his way - especially this Thursday morning!!