Saturday, August 08, 2015

So What's Up?

So here we are again. Another (almost) diagnosis, but two years more experienced and (hopefully) wiser.
Each year Ruby has a full panel of blood work done. It's one of the many things that is just standard protocol for kids with Down syndrome to help detect anything from celiac disease to ITP (don't even ask me to define it, let alone spell it). After Ruby's tests earlier this summer, one of her nurses called us to schedule a re-test. 

Fast forward to the day of the retest: the nurse came in and told me they needed to run the platelet count again, so she pricked Ruby's finger to draw some blood. Ruby flinched only slightly and then we waited patiently while the blood took a while to pull into the small vile. She put a quick band-aid on Ruby's finger and told me that the test would only take about ten minutes, so she'd be right back with the results. When the nurse walked back in, it was obvious that she never hit it big at Vegas. She quickly told me that our Doctor was not in yet, but that she'd give me a call when she arrived to give me the results. Ruby and I walked out (waving like we were on the red carpet the whole way...they treat her like a celebrity there), and drove to speech therapy.

That drive is about 40 minutes long. Enough time for me to float around in my head a little bit, especially because Ruby was busy reading books. My 'spidey sense', as Lehr calls it, was already honed in on Leukemia. We've had a full CBC and other blood work run twice before for Ruby, but everything has always come back clean. However, one of the things that I've been trained to worry about with Ruby is childhood Leukemia, so pair that with the low platelet count and the wheels were already starting to turn for me. I honestly put it out of my mind during speech; I didn't even bring my phone into the office with me. But when we returned to the car, I was greeted with a voice mail from our pediatrician saying we should expect a call from a hematologist to schedule an appointment.

This is when it became a reality for me. This wasn't my overprotective mind running away with some random symptom....we were going to see a hematologist and oncologist.

The crazy thing is, the very first emotion that washed over me was gratitude. Immense and overwhelming gratitude. For Ruby, for the last two years, for her first steps, for her laugh, for living in Atlanta with doctors that help me remember how to be proactive, for her relationship with her siblings, for her work ethic, for her crooked smile, for the many hours I've been able to spend doing therapy with her, for her joy touching everyone we know. It wasn't a bittersweet gratitude, or a weird preemptive celebration of a life lost....it was pure gratitude just because. I know without a doubt that it was not because I am a strong person or someone who always finds the positive in things either; that was the Holy Spirit in that moment putting blinders on me and pointing me directly at what I should focus on.

There have been tears though, even some within an hour of that reality, but not many. Not nearly as many as I had in the first 48 after Ruby was born. That's another gift Ruby has given me: the ability to process things quickly and get to the 'now what' stage quickly. It's like she has taught us that things are not always as they seem, but even when they get hard (as we know they will), dance your way through it because it's coming regardless.

So where are we now.... We met with the hematologist (two, actually), and they took more blood. Then they ran a quick test AND did a smear to look at some of the actual cells under a microscope. We stayed at the office while they did that, so before we left, they could discuss the results with us. Ruby's platelet count and white blood cell counts were low still, and the doctor did see some concerning things in the actual cells. The next step was to send the blood to another expert to do another smear (that would be the fourth time Ruby's blood was looked at by at least four sets of medical professional eyes within a month). We received those results the next afternoon. The smear did, in fact, show Leukemia cells. Ruby will have a bone marrow biopsy next week to determine the architecture of the cells (?) and to get an official diagnosis and plan for treatment.

Where is the good news?
  • Ruby is a rockstar who defies the odds. Duh. 
  • She isn't sick at all...this is all coming about because of standard blood tests; she has shown no other symptoms so far. 
  • While kids with T21 may be more likely to get leukemia, they also respond very well to treatment.
  • The percentage of cells that Ruby has showing the leukemia is low. Not low enough to ignore, but still low.
Finally, the best news of all. God is good. I mean that wholeheartedly. Lehr and I have been very at peace through this whole thing. Even in my moments of weakness, I have never felt despair or like I was alone. My moments of weakness have come from the place of grieving my expectation. A mid-life issue of 'entitlement', if you will. ("But she's supposed to go to preschool this fall and skyrocket to the head of her class", "But I didn't have chemo on my schedule for September". "But this wasn't part of my plan").

God is walking us through this and I know He has great plans for this next stage.We sent this information out to our amazing friends, family, and prayer warriors and Lehr put it best:
We are all in a good place and know a few things. 1) God is good. No resentment, anger, or 'why us' here. 2) Ruby only knows one gear: and that's to kick ass and she plans to keep doing just that. Her words not mine. 
 

2 comments:

Barbara Reed said...

First, how beautifully written! Second, Ruby is a blessing to all and is blessed to be in your family. The photos you post just brighten my day here in Pa. Ruby's Florida grandmom and I have been friends since 4th grade, so I get to be on Ruby's team ! God IS good and He's got this. So glad it was caught early.

Alan Scott said...

Ruby's a gem! Thanks for these words.

Blessings,
Alan