To avoid any unnecessary drama, I'd like to preface this post with the following sentence: I do NOT have cancer.

We spent most of Tuesday at Texas Children's, and most of Wednesday at MD Anderson.

Medical updates first:

Sunley gets to be DONE with her fluid restriction! We are so happy to not have to measure every single liquid, as this has included things like ice cream, spaghetti sauce, smoothies, and Sunley's favorite: Pho. Her chest x-ray was clear, and her echo looked good. She developed some collaterals about 3 weeks post op that are still there, around her descending aorta, but they are not currently causing any issues that we can see. So, we will continue to watch them and if needed, she can have another catheterization to coil them off. Hopefully that won't be needed, but I'm glad we know to watch for it. She does have to stay on a very small dose of Lasix for another 4 months, but we got permission to experiment with that ourselves and hopefully will come off of it before then. Unfortunately, when I asked about her leg pain, I got the response I was expecting: "Yes, we see that in a lot of Fontan patients, but we have no idea why." I knew that was probably the only possible response, but I was hoping for something we could FIX. Sunley's knee and ankle pain has gotten bad enough that she doesn't love going on stairs, and sometimes the pain is the first thing she acknowledges when she wakes up. Obviously, this isn't life threatening and I'm grateful for that, but it's also not what I want for a four year old little girl. I plan to just help what I can (weighted blankets, compression socks, etc) and pretty much never ask her about it. If she brings it up, then we'll discuss it, but I don't want to constantly be asking her (or reminding her) about her joint pain. This is one of those points where it is ultimately her battle, and she will just figure out how to go "mind over matter" when it comes to her legs. It feels a little unloving to say, but it's the reality: I can't fix her leg pain, and I also can't let it be the center of her day, so toughing it out is truly the only option. Her age makes me worry that it could get worse, but we will just cross that bridge when we come to it. And in the meantime, we will work really hard to get the Fontan Go program funded so they can start trying to figure out this post Fontan stuff. *Side note: There are over 30 lemonade stands going up starting tomorrow (July 22) and the next day, so click this link if you’d like to find a stand near you or make a donation. We are raising money through our nonprofit for the Fontan Go program at Texas Children’s. All the info you need is here at Write With Light Project.

Sunley's blood pressure was a little high at this appointment and her last one, so we are putting her back on Enalapril and upping her dose of that. Her next follow up will be in November, and we'll check everything we checked today!

After her appointment, we got to see our friends, the Blankenships, who are inpatient right now, and it was very very good to see them. If you have followed Sunley's journey, then you know about Oliver. He was born around the same time as Sunley, with a similar heart condition, and they actually had their first surgeries on the same day. Everything we have gone through with Sunley, we have done alongside Leslie and Brian. They are beyond special to us. Oliver just had his Fontan and it has not gone well so far. He has a Facebook (Oliver's Journey with HLHS) and Instagram (@Olivers.heart) page that you can follow if you want his updates as well. Leslie and Brian also had their older son with them, and Sunley declared nearly immediately that they are best friends.

I truly wasn't worried about either appointment, TCH or MD Anderson, but being back in Houston this time felt so different than our trips before. I'm usually totally fine going back, because our memories there are so deep and special. But this time, driving into "our" part of Houston from the airport just felt very triggering and a little overwhelming. Once we got to the hospital I felt much calmer. I know the people in that building actually possess the knowledge and skill to do something. In there, I'm not shouldering any weight by myself – everyone there knows what single ventricle means, and they can actually formulate plans to do something about it. The going back and forth from normal life to hospital is just difficult. It's been hard since we got home after the Fontan. We've always had a "next step" with Sunley, and to be thrown back into yet another new normal of post Fontan life feels weirdly difficult to navigate. I spent the last four years praying for a good Fontan outcome, but I didn't think very far past that. I'm being forced now to accept that this was all palliative – Sunley is not healed, and is already developing little symptoms like chronic leg pain that have no rhyme or reason to their existence. For some reason, having no intervention planned for her future feels more overwhelming than having a next procedure coming up. Barring any complications, it is possible that Sunley will have nothing but follow ups every so often and a Cath every ten years or so. That's what we hope for her, but we are always prepared for a hundred different paths should she need more intervention.

When sunley was born, another weathered NICU mom told me to prepare for the crash when we took her home – a heaping of emotions that hit all at once when it's finally all over and you realize you came through it. That never happened for me. I don't dwell on her diagnosis, and I don't let our lives revolve only around Sunley's diagnosis, but I also don't think I will ever really put this all behind us (and I don't think I should expect myself to), because it's not actually over. It's never done. Sunley had her last planned palliative surgery, but as her parents we will always be quietly watching for the sneaky symptoms associated with Fontans – many of which have no fix.

Where does that leave me?

So I take off the shoes I was never meant to wear.
I put my bare feet on a ground, though cursed, a ground you brought to me.
My feet are planted on an earth I didn't create.
I take a deep breath. And one more for good measure. And though I'm not ready, I take just one step. And I pray it leads to somewhere.

The day after we got home from Houston at the end of May, I noticed a lump. And although I truly wasn’t too worried about it, giving me cancer right after surviving four years of heart surgery stuff? Yeah, that sounds like something Satan would do. I told Derek not to worry because I can totally pull off a bold bald look, but for some reason he didn’t find that funny. I scheduled a mammogram and ultrasound, but it was rescheduled 3 times, so I decided to just try and squeeze it in (pun intended IYKYK) while I was across the street from the best cancer center in the world. I was so impressed with MD Anderson and their efficiency, and was happy to get my result just an hour after my testing. No cancer here! I know we could have faced it if we needed to, but I’m glad that’s not our path right now.

The last few months have been an adjustment, as I’ve said. Moving into our new house, surgery, homeschooling, starting up the nonprofit and organizing our first big fundraiser was maybe a little too much to expect of myself, not to mention the whole maybe-cancer thing. I didn’t share the mammogram thing with almost anyone, just because I knew it was probably nothing, and also because I’m so tired of asking for prayers. I appreciate the help and the prayers, and I do need them always. But I’m so weary of being in crisis mode. Here’s hoping August is a fresh start for us.

PS-Please come to a lemonade stand!