To say an update is long overdue would be an understatement. In part, because we forgot to post an update we drafted in February - oops. We will post that update below to share our frame of mind from two months ago. We know our silence here is noticed. Sometimes it’s easier to stay focused on the now, and not reflect on the entire journey. Thank you for understanding.

But as for now…

Thank you for the continued prayers, thoughts, and encouragement. Just because we’ve been silent on this front, doesn’t mean that it’s been quiet at our house. For our part, we’ve made it a goal to attain normalcy in life as best we can. We went on a quick spring break trip to San Diego and had a blast at the San Diego Zoo. Kai has participated (WON first place!) in two golf tournaments and played tee ball. CC went out for  softball and has enjoyed a fun season on the Flaming Hot Cheetos with friends(Dave is rockin it as Assistant Coach and team cheer writer). Addi went back to school after spring break in March and within a few weeks was attending full days! Before then she was doing virtual tutoring 4 days a week, which she did not love. She also broke her arm doing the things normal kids do, which was both a bummer and a sign that life is returning to something close to normal. And woven in between all of this were countless calls and emails to hospitals around the country, seeking counsel about treatment options for Addi. 

That brings us to today. 

Through our research we have decided to pursue the course of treatment recommended by Mayo Phoenix called Proton Beam therapy. As we have mentioned before this is not a new type of treatment, but advancements in targeting technology have made this form of therapy appealing for treating AVMs when precision to the exact millimeter is required. The prescribed treatment plan calls for three rounds of treatment spaced 3-6 months apart. Each treatment (should) be a relatively short affair; a couple hours + outpatient event. According to the doctor, they do not expect much more than minor symptoms (maybe some nausea for a day or two afterwards). Each round is meant to treat one of three different parts of the AVM. The hope is that it drastically reduces, or even eliminates, the AVM over the course of 2-3 years. 

Reaching the milestone of finishing our research and making a decision about treatment is challenging. Addi - by nearly all measures - is doing very well. She’s healthy, confident, joyful. We, and she, are just starting to live a life of relative normalcy. But reaching this milestone feels like a forced jolt into the unknown, into more hospital visits, into making Addi’s treatment front and centered. By opting into this treatment, this includes upwards of 8 hospital appointments over the coming weeks, and several different activities requiring general anesthesia (Scans, simulations, treatment itself). We kicked into this mode last week, and today is one of those days Addi gets a medically induced nap. The appointment today is to place four tiny metal “markers” in her skull to serve as spatial bearings for targeting purposes. It is a relatively simple procedure, but a bit nerve-racking nonetheless. She will only have a single stitch for each marker and they will not have to shave her hair. For Addi, that’s a win. 

After this we will work with the team at Mayo to finalize the treatment plan and schedule. Our hope is to complete the first round of treatment by early June so that we are all cleared to spend a few weeks in Holland, MI in July 😎. 

So that’s our update. We’ve spent the better part of 5 months getting Addi fully recovered from her November hospitalization, and getting life “back to normal”. In the meantime, we have done the hard work of navigating a convoluted healthcare system to talk with as many doctors familiar with Addi’s condition as possible, and make the most informed decision we can. 

The easiest way to also frame this decision in the full context of Addi’s life is that there is no way to play defense with her condition. Nothing we do can prevent or forecast another bleed. From the sounds of it, we are fortunate that she has not been MORE effected (physically) by these incidents. So the only thing to do is to play offense. To attack the thing that puts her at risk. ‘Do nothing’ is simply inviting more of what we’ve already experienced. 

Thank you for your patience and your ongoing support of Addilyn and our entire family. 

Over the last 8 weeks we have slowly and not always surely made progress towards gathering information and exploring treatment options. In short, the medical system is such a quagmire of dysfunctional systems that it at every turn never ceases to disappoint. It often puts us in a defensive posture where we can’t even expect the simplest of tasks to be done correctly or without delay. End rant. 

As for a summary of recent progress…

A few weeks ago we met with the head of neurosurgery at Mayo Phoenix to discuss his “draft” treatment plan for Addi. This would include 3 rounds of proton beam radiation spaced 3-9months apart. We have in parallel - and upon the encouragement of the Mayo doctor - sought the review and recommendation of doctors at Mayo Rochester, NYU, Banner Hospital Phoenix, UT Houston, and UC San Francisco. But as mentioned in the first paragraph rant, this is a laborious, time-consuming, and often time frustrating endeavor to engage within and between each institution’s system. Between Brittani and I, on average we make 3-5 phone calls and e-mails each day to nudge, confirm, and plea for progress. 

We are now starting to get responses coming back our way. After a few weeks of coordination one doctor turned us away because of Telehealth legalities (couldn’t that have been identified when we first called?). One doctor doesn’t disagree with the proposed plan by Mayo Phoenix, but would probably opt for a different route. One is in the process of discussing with his team. And two more are still MIA. 

As for a day in the life of Addi… She remains home from school but receives virtual tutoring from the district as we try to keep her at grade level. In December we pulled Kai from this daycare, so the two of them get to spend a lot of time together. They get along quite well and we are blessed to watch them enjoy each other. Addi also has PT or OT a couple times a week at the Children’s hospital. However, this will also be wrapping up since she has reached a plateau that only time will heal. Unfortunately, Addi has experienced increased anxiety over the last few weeks. It’s only to be expected - now 8 years old, she can’t ignore what she has endured or is currently navigating. Nonetheless it is a new facet of her journey and we are managing it with sympathy as best we can. 

On a different note, if you haven’t checked it out we were delayed in posting the 2023 Curtis Cinematic Yearbook. You can have a look-see of the ups and downs of our family. And if you desire just a bit more cuteness, here is a recap of Kai’s first golf tournament! Proud dad moment. 

Thanks for the ongoing support. Just because we aren’t sharing as much, doesn’t mean we need less of it. We are doing our best to normalize a mode of life that is far from normal. Or at least far from our hopes of “normal”. But we take one day at a time, one foot in front of the other, and take what comes. And all the while grateful for another day with our sweet Addi.