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So, I’m merging from just Josiah’s CaringBridge blog to just my Vivazapatas blog. Right now, I’m updating more on CaringBridge because more people are aware of it. However, it’s easier to put more photos on here.
If you’re interested in a very detailed report on our Florida trip, please visit www.caringbridge.org/visit/josiahzapata. However, if you’re more of a Cliff’s Notes person, I’ll give you the lowdown on the trip here… and now.
The week was amazing and I wish we could go back. The Give Kids the World Village was incredible. We had half of a duplex with 2 bedrooms, 2 baths, a living room and an eat-in kitchen. It was really close to a new big playground that they just finished building.
We went to six parks in five days, which sounds insane, but worked out really well because of a couple things. First, our children could only go on a few rides at some of the parks. Second, Josiah had a special button that he wore that acted as a fastpass/handicap access for the rides. Since we got in quickly for each ride/show and Tony & I gave up our desires to ride a bunch of rides, we were able to do everything that the boys wanted to do or would really love… and we weren’t exhausted when we got home! Well, Anastasia was exhausted when we got home. She spent a little time every day like this:
Some of our favorite things from the trip were: seeing Mickey Mouse, feeding the dolphins at Sea World, seeing the Shamu show, watching Mickey’s Philharmagic, trying on hats…
… riding horses, the Finding Nemo musical show, meeting Superheroes, going to Pixar Place & riding the Toy Story ride… and sleeping.
Here are a couple of other shots from our week… and I’m sure I’ll be referring to our trip for some time to come.
and we left into the sunset…. 
Today has been a full day… of good things.
I went this morning & got 8 inches cut off to donate in honor of Josiah to Pantene’s Beautiful Lengths. 
Then, the Make A Wish Foundation had a send-off party for Josiah (& us). They held it at Pump It Up complete with pizza and a Cars cake. Most of our Life Group & a few other friends were able to come, which was so fun. Make A Wish & the sponsoring company surprised Josiah with bags of goodies (sunglasses, camera, big Mickey Mouse, etc.). I think everyone enjoyed it a lot… I know that Josiah, Luca, Anastasia, Tony & I had a BLAST! 
Now to get some rest so I’m awake enough to take Josiah for his blood tests & a “once over” before we leave for our trip.
(On a side note, Luca was sick this morning and vomited three times. He had no fever and after some food & prayer, he was fine. Please be praying for all of our health & protection so we are all able to fully enjoy our trip. Thank you!)
Are you seeing a pattern in my irritation with our week? The majority of this entry is exactly like the Caring Bridge one, but there are a few other things that I wanted to share. I am SO thankful for a God who takes care of little details, even when it seems like no one else does. I am SO thankful for Luca & Anastasia and the flexible children that God created them to be and the compassion that Luca has for Josiah. I am SO thankful for our group of friends here in Nashville who rally around us in the midst of insanity to give us the support we need in very tangible ways. I am SO thankful for a warrior husband who leads us through these insane times with mostly love & dignity. (We both lose it a few times because we’re only human. HA!) I am SO thankful for family, even though they’re too far away, that agrees with us in prayer and is here when they can be. And, I am SO thankful that we get a vacation in 9 days! Yay for Make a Wish!!
Now for more details & explanation of all that we learned today…
The whole reason why this was such a quickly planned surgery is because of a few factors, of course. The CT scan on Tuesday showed that the air-filled cyst had expanded some. Josiah’s surgeon had already mentioned the possibility to us of needing to drain the cyst a couple of months ago. Well, when the oncologists saw that it had gotten bigger, they brought it up to the surgeon asking what to do about it. The surgeon discussed the case with his mentors/colleagues that he trained under at St. Jude. None of them have seen this happen in a Wilms’ tumor case and only a few times in pnuemonia-type situations. Since there’s a chance that it could start leaking air, get an infection or pop and Josiah hadn’t had chemo in a few weeks, they felt like they might as well do the surgery this week as a proactive treatment.
We got to the hospital at 6 a.m. and found out about 6:30 that our primary insurance was no longer in the system. So, we had to wait about an hour to get that situated. We got back to the pre-op room around 8 (when the surgery was supposed to start). The surgeon came in about 8:45 and talked with us about what his plans were & why. He told us that we could opt out of surgery today since there was no emergency with the situation and that we had time to talk because he had to go take someone’s appendix out.
Tony & I talked over the next hour about the pros & cons of doing the surgery now or later. We weren’t thrilled about the last-minute nature of it, but we felt that since we were there & it seemed like a wise move that we would go ahead with it today.
When the surgeon came back in, we started talking with him some more about the whole situation. To his credit, he definitely took time talking with us today and went in depth with our questions. He actually pulled up the scans & x-rays of Josiah’s lungs for us to see what he was talking about. Those were mind-blowing. The air cyst (pnuema-something) is about the size of a softball in Josiah’s right lung. On the scan, it looks like a big black hole that covers almost a third of his lung. Crazy to see! The surgeon showed us how the cyst is adjacent to one of Josiah’s air valves, which probably explains why it is filling with air. The majority of the other “tumors” have turned into these air cysts, but they are all small and/or shrinking. There is one lesion that still has tissue involved with it even though they are unsure of whether it’s fully dead or still has some live cells.
Including all of that, brings up the possibility of them having to go in later in the summer to “pluck” out the other cysts/lesions. So, for the larger air cyst, the surgeon’s goal would be to insert a catheter in to allow the air to escape. Ideally, the cyst would collapse on itself & seal off any further air from leaking. There is the chance, though, that because it’s adjacent to the air valve there could arise other issues & they would need to do something more invasive while on the operating table.
That brought up the plans for next week – childcare, the send-off party and, of course, the trip to Orlando. So, I asked him how he saw this surgery affecting those things (length of hospital stay, etc.). He was surprised to hear that we had this trip planned and you could tell that it sort of threw him for a loop with what to do. I could tell because his sentences jumped around like mine do these days when I have a lot going on in my head. As we talked through it, and he confirmed with the oncologists, he determined that there wasn’t any increased risk of something happening with Josiah on the trip involving his lungs (no more risk than there is now). If we did the surgery and postponed the trip, there are too many variables that can come up to guarantee when a trip would work out. So, he said to go enjoy the trip & we would talk about when & what to do with Josiah’s lungs when we get back. He gave us the hospital in Orlando that he recommended if something should happen and gave us his number & email as well.
Since they had put off Josiah’s chemo treatment yesterday because of the surgery, the oncologist had the surgeon send us up to the clinic. That way Josiah’s still on track with his chemo at this point. So, we went up there around 11 or so and hung out for a couple of hours while all of the charts got sent around and pharmacy got the chemo put together.
When I left the hospital, we had been there for eight hours. It didn’t feel like we accomplished very much in that large amount of time, but I guess it was all in a day’s work.
I’m taking the delay in surgery as time from God for the surgeon to gain wisdom & knowledge on the best way to proceed – whether to treat the air cyst soon or wait & take care of it when they take care of other nodules in the lungs so it is just one surgery instead of two. We are also praying, obviously, for added protection over Josiah as we’re on the plane & in Florida.
I think that about covers it all… or at least the majority of what I know. Now I’m going to enjoy a quiet house with a movie and some sweet treats.
Two weeks from now, we’ll be in FLORIDA!! YAY! We cannot believe that this is really happening. We also are floored at all of the little things that Make A Wish is doing to make this extra, extra special. For example, they’re hosting a send-off party for Josiah at Pump It Up (a local inflatable playground) on the Wednesday before we go. They also have scheduled for a limo to come pick us up to & from the airport here in Nashville! The village that we’re staying at has putt-putt, a movie theater, pools, etc. We could enjoy a whole week there without even going to all of the Disney parks… but, I don’t think the boys would be pleased if we did that. They’ll be taking care of our food, giving us a rental van & giving us spending money as well. It’s really incredible how they take care of every little detail.
It’s a good example of how God wants to bless us abundantly in our lives. He could do the minimal just to take care of us, but He chooses to give us an abundant life when we place our lives in His hands.
We have to get through this week – CT scan at 3:30 on Tuesday, which means no food after 6:30 a.m., and chemo on Thursday. This week is going to remind us of why they have granted us this incredible wish.
Then, we’ll have a week to get ready – including my haircut for Pantene Beautiful Lengths. Yes, it is officially long enough to donate! Now to figure out how short to cut it.
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