Get ready, get set, for the longest wait yet…

As I kissed Cody to send him off to school this last Friday morning, I registered the sound of a noise in the background somewhere…music, or something? It sounded a lot like the opening of the t.v. show “The Office”…but I hadn’t turned the tv on that morning at all…what the heck?!, I thought. I closed the door behind Cody, turned around wondering if it was Evy making some kind of noise from his room (I’ll admit that I was a slight bit startled by the mysterious musical sound!)…and then it dawned on me that it WAS “The Office” theme song I was hearing! My phone was ringing!! (The Office theme song always makes me smile & laugh, as I’ve recently fallen for that show…yes I know, I’m over a decade late to the party on this one, ha!! So I set that theme as my ringtone to remind myself to lighten up whenever possible.) But I figured that detail out just a second too late, and missed the call.

It was the call we had been waiting on for nearly a month; our genetic counselor from HSC phoning to tell us the decision of the funding committee–would they approve the funding to test for the specific “RNAse T-2 ” gene we need to look into for Evrett? Or, would they turn us down? The call went to voicemail. I waited for the “1 voicemail” notification to show up on the iPhone screen, my heart pounding so hard that it felt as if it was right up inside my throat, about to gag me with it’s thundering beats. I swallowed hard. “What if they said ‘no’…what would our next move be? We HAVE TO find out if what they think he has is actually what he has…” I stopped the train of thought dead in it’s tracks before it went off the rails. After all, there was no need to think about plan B unless the board had turned down the request. And from what we knew, that was very unlikely to happen in Evy’s case. After what felt like 10 mins, but was actually only about 10 seconds, the voicemail notification showed up. I picked up the phone and hit “call voicemail”, entered my password, then hit “1-1” (because for some reason unbeknownst to me, our phone company isn’t sure you actually want to hear your voicemails…even after calling your inbox, & entering your passcode…it STILL wants you to confirm that you actually want to hear them by pressing 1-1…this baffles me! Why the heck else would I be calling my VOICEMAIL if I didn’t want to hear what was on it? So odd…)…and waited to hear the verdict.

Breath Lace, let the air out…let your lungs fill back up….out….in again…and out again….

“Hi Lacey, it’s ‘K’ calling from Genetics. We met with the committee to review Evrett’s case, and…”


<Insert happy dance here>!!!!

To say that I was thrilled was an understatement!! I phoned K back right away, because I had 2 questions for her: 1) Would they need yet another DNA sample? and, B) approximately how long would it take for us to find out what the final results are?

K had both good news for me…and then some news that temporarily turned my smile in to a bit of a frown. First of all, she informed me that they would most likely not require another DNA sample from Evy, unless the other one is deemed “unacceptable”. Yay!! This means that for the time being, there are no more upsetting needles needed for our little Bug!! No more hurdles to jump through! All we have to do is wait for the final results. And then we either have our firm diagnosis (of RNAse T-2 Deficient Leukoencephalopathy)….or we don’t…but as I said earlier, no need to think about what option B (or C, or D, or X…) would be at this stage. We simply need to be patient, and await her next call.

Yahoo!!! And we’re off to the races!….only, hold on a minute…it turns out we are talking about a 6-9 month race. Bummer!…In my mind, I had been banking on maybe another 3 months until we knew these telling results. And the idea of 3 more months felt like long enough to me. But SIX, or even NINE?! Geez…

But rather than pouting over that detail, I quickly realized that the main thing to focus on here is that he is APPROVED for the funding of this very rare genetic test. This is a huge deal!! It was a massive obstacle that could have easily held up our quest for an indefinite amount of time, and we no longer need to be concerned about it. Yes, it means likely another 6-9 months, but we have come through the maze. No more twists and corners to navigate. No more hidden passageways. We can see the light at the end of this tunnel…it’s just a longer tunnel than we realized.

And that’s ok. We can deal with that 🙂




P.S. Thank you to everyone who sent positive vibes or prayed for the committee to approve funding for Evy’s further genetic testing. We deeply appreciate your thoughts and energy!!




Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Website Powered by

Up ↑

%d bloggers like this: