Sometimes new words mean more questions.

Things have been significantly more difficult over the last two weeks. Then, we had a pre-surgery meeting with our daughters amazing team where in the proverbial straw fell onto the camel’s back.

Note: This topic is not one that I wanted to write about just yet. It is a bit difficult. In order to make it better for you, and me, I will be providing pictures from our recent family vacation.

Her love for birds is amazing and exciting

I know it has been some time since I have posted. We have been ramping up for Zoey’s next surgery.  This has meant most of our time has been consumed in preparation and the exhausted state of worry that comes with it. But, things have been significantly more difficult over the last two weeks. Then, we had a pre-surgery meeting with our daughters amazing team where in the proverbial straw fell onto the camel’s back. The information that we discussed has started a torrent of communication that we (my wife and I) frankly are not ready to have, but need to get out there. It all starts with this statement:

This surgery WAS scheduled for Wednesday July 17th, but has now been delayed.

The reason for this delay is completely based on the results of the recent round of genetics testing that came in a few weeks ago. The exact things that we have been wrestling with. We know not how long the surgery will be delayed for as we are just waiting appointments with new specialists.

Excitement, Fear, Joy, & Determination all rolled into one photo

There were two things that came back on this test. We know very little about the first one, and it begs some understanding before I even talk about it.

With genetics there are five levels that something could be. Benign, Likely Benign, Uncertain, Likely Pathogenic, Pathogenic. As this implies, if something is found, they can provide some degree of understanding as to how important it is.

CSER Diagram

A new term, but what does it mean?

With this being said, Zoey was found to have the markers for a Strongly Pathogenic link to Diamond Blackfan Anemia. Right out of the gate, yes, we have had Zoey tested for anemia, as well as a full blood culture, and things came back perfect. But this is only part of what makes this puzzling.

This potential diagnosis explains SOME things that Zoey has going on, but it does not explain her cranio, at all. We will be meeting with a hematologist in the near future to make sure that she is being monitored, as well as to add screenings for bone marrow cancer as well as leukemia. This monitoring is based on the case that IF she does indeed have the markers, then she may have the increased risk of these cancers (as well as others) that are associated with it. Ambiguity when it comes to cancer is so great? Right?

I am not going to pull any punches. There have been countless times we have been in the PICU and have told each other that “at least we are not having to worry about our child having cancer, this is just a surgery”. Needless to say, this one has been a torrid storm of gut-punching research. Not just by us. The team of specialists that follows Zoey has been researching like mad to see what this could mean for her and her care.

The one in the middle likes to talk to the birds, and I am okay with that.

But wait, there is more. There is ALWAYS more.

The second thing that came back also showed up in KatiAnn’s testing as well. Both Zoey and KatiAnn have markers that are strongly linked to cardiomyopathy. It was recommended that Zoey and KatiAnn both meet with and are followed by a cardiologist.  We are meeting with a cardiologist for Zoey this morning, things move so quickly sometimes. With this meeting we hope to learn more about what this means, and what it may mean for Zoey. 

Needless to say, it has been a rough couple of weeks. We have been processing this new information, wanting to get more information before sending it on. There are many blessings in having her surgery delayed. We know that. Zoey should be able to go to VBS at our beloved church, The Chapel. We will be able to ensure we have things ready at the house for when she comes home. And much more.

It was so hot, but he loved it.

Current state of life is setting the sails to stupid and rolling in the doldrums.

But, we have been ramping up a lot for the last 6 weeks in preparation for this surgery. I. AM. EXHAUSTED. I take no joy in the fact that for the last few weeks I have been saying that “I cannot wait until her surgery is here so I can finally get some time off of work”. As I usually do, I have been burning the candle at both ends, and melting the middle. Work, parenting, starting up my channel on Twitch broadcasting, dungeons and dragons, life, liberty, the pursuit of sleep. All of these and more have been my focus. Some to get things prepared, others to help my mind go free. The burden of being a dad to these amazing kids is heavy. It is good, but still heavy.

Thankfully my work has been awesome about this, and hopefully they will continue to do so. So much planning has gone into play that surrounded the idea of Zoey going into or recovering from surgery, that it will take some time to dismantle/delay/cancel/etc. them.

I am also thankful that things are going well with Twitch. Having an outlet where I can play games, interact with others, watch others play games, and just be part of a community of amazing people has been priceless. It is not ironic to me that having a broadcast schedule, goals, giveaways, and all that is involved provides me solace amidst the chaos. It has been therapeutic to talk with others about life, even cranio, on a platform built on community.

A rare photograph of them all playing together. Not because they do not, only because we usually do not photograph it.

And so we beat on, like boats against the current…

For me, this means more nightmares. This also means the feeling of letting people down. So many of you out there have adjusted things in preparation for this surgery. But we know and realize that this is all for a good reason, but it does not make it any easier.

Once we know more, after meeting with new doctors, running new tests, learning new things, we will again have a date for this surgery. It will still be another Fronto Orbital Advancement (FOA). It will happen. Until then, I will do my best to keep things in line. To learn what I can. To continue to play and broadcast in the desire to meet and talk with others. I do more with the kids. Mostly, to do more to prepare for what is to come. Perhaps the greatest benefit in this delay is time. Time is the one thing that we are always out of. Now, I have a bit more to prepare to be the superdad my daughter will again need when she is again recovering.

Until next time.

Live big, love bigger, and be kind, always.

5 thoughts on “Sometimes new words mean more questions.”

    1. I know, so much to take in on top of so much already on the plate. We shall not hunger for questions. But we will ache for answers.

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