Twas the night before surgery...

Within an hour of the publication of my last post, Zacchaio's upper respiratory issues became a bit more distressing. His barky cough was more frequent and higher-pitched, his nose began to run again, and he was having increased difficulty clearing the junk that sat cemented in the back of his throat.

The following morning we had a phone appointment scheduled with the pediatric anesthesiologist. I was sure she was going to cancel surgery, as protocol typically states that any cold-like symptoms experienced within a week prior to surgery deems one unsafe for anesthesia. Surprisingly, she said she would check in with us today, two days later, to determine whether or not Zacchaio was in an upward or downward trend. 

I obsessively reevaluated Zacchaio's health every hour today in hopes of having a clearer idea whether or not he would be having surgery tomorrow. Anesthesia called again this afternoon and I reported the latest. They said we could either cancel surgery or arrive at UCSF tomorrow as scheduled so the anesthesiologists could personally evaluate him and weigh the risks.

We saw a UCSF neurosurgeon today to get his insight on a couple of anatomical concerns. There is an area of Zacchaio's bone flap (the bone originally removed and replaced for brain surgery) that has, well, disappeared. Bone resorption is the process by which bone is broken down and its minerals are released.  This is supposed to be coupled with bone generation, but Zacchaio is missing a silver dollar-sized area of his skull that isn't coming back. We will continue to monitor its size, as well as take precautions to ensure it isn't forcefully contacted. The hope is that his skull will regrow and eventually fill in the gap, however considering that the gap has only grown in size over the last month, I am not very confident in the growth process. If it continues to widen, the plastic surgeon and neurosurgeon will have to intervene. We'll have more on that in the coming months.

As for tomorrow's surgery...

Our arrival time is scheduled for 8:30am with a 10:30am surgery time. Total time in the operating room will be 1.5 hours. 

Praying our boy wakes up healthier in the morning...

Praying for good news regarding the biopsy.

Knock it out of the park, kid.

Extremes

We met with the pediatric orthopedic surgeon on Wednesday to review Zacchaio's test results. Unfortunately I can't characterize the news as either "good" or "bad."

- What we verified through the MRI of his right arm is that there is a very large lesion/mass/tumor that has eroded away what now looks like 80% of his humerus bone. 

- His bone scan was negative which means one of two things. Either the lesion is benign, or contrastingly, is one of the most aggressive and nasty cancers known to man. In this moment I'm feeling as if the only thing a bone scan is good for is instilling an unprecedented amount of fear in parents. It's really good at that.

The plan was to update the blog from the beaches of Venice in Los Angeles, though where I find myself currently is on our own living room couch in oversized sweatpants. A few days ago, Zacchaio woke up with a runny nose, the earliest indication of yet another upper respiratory infection which has historically sent him to the hospital for 1-week long admissions. With plastic surgery scheduled on Friday, we couldn't take any chances and decided to cancel our trip, quarantine him in his own environment, and focus on getting him healthy. Our plastic surgeon is booked solid for the next six months so we can't afford to lose our surgery date! We took it upon ourselves to try something new and have been proactively giving Zacchaio saline nebulizer treatments (normal saline solution converted into mist for inhalation) in hopes of lessening and thinning his secretions. It's been four days of nebulizer treatments every four hours and it seems to be halting the progression of whatever virus he might have contracted. In fact, he is no longer showing signs of a runny nose and we're praying that continues until Friday!

As for Friday...

The timing worked out quite well between the diagnosis of Zacchaio's arm lesion and his plastic surgery date. As soon as the anesthesiologist puts him under on Friday, the orthopedic surgeon will come in (on his day off I might add), make a small incision in his right arm, and biopsy the lesion. I asked how long until we find out if it's malignant? He said we'll know immediately. Friday morning calls for a lot of prayers. 

I haven't been nearly as cheerful since Wednesday; I find myself often spiraling out of control with "what ifs." Life has been unimaginably beautiful and it is hard to fathom that cancer may be trying to dampen its brightness. Although the last nine months of Zacchaio's life have been riddled with obstacles, I somehow felt optimistic he was going to overcome each one. When I entertain the realistic possibility of cancer, I'm stricken only with fear. I shouldn't get too far ahead of myself.

The latest!

I apologize for the delay in getting another post published! Finding a single quiet moment to sit and type seems to be near impossible nowadays. Between being a parent of two (how did you all do it?!) with one of them being special needs requiring numerous appointments every week, sometimes I feel like I can't get my head to stop spinning!

Zacchaio was discharged last Saturday evening from UCSF's PICU with his admission amounting to a 6-day stay. His previous admission in July for identical reasons lasted well over a week, so our decision to take him in early most definitely served him well.

Here is where we stand today...

- We still don't think we're seeing any seizures. Hallelujah!!



An inside look. Goodbye rotten brain!
Left: Zacchaio's brain prior to surgery.
Right: Zacchaio's brain after surgery. The white is empty spaced filled with cerebrospinal fluid.
Note: MRI images are reversed. He had most of his right hemisphere removed.

- A couple of posts ago I mentioned that we were seeing Zacchaio's ophthalmologist for his lazy eye. On the morning of his appointment, we were playing in usual fashion while I incorporated eye tracking exercises. I couldn't believe what I saw... his lag had completely disappeared and it hasn't shown itself since! He's amazing at problem-solving.

- Zacchaio is developing tremendously! ABM therapy is doing wonders for him. He is so alert, engaged, and attentive. I can't get him to stop moving during diaper changes; his excitement for rolling over and discovering what awaits him on his play mat cannot be restrained! When we're in the car he leans forward and out of his chair, laughing as he looks out the window to the left. To his right he consistently searches for Alkaio in hopes of some kooky 4-year old entertainment. He continues to explore what his voice is capable of and is making new sounds every day. At the moment he is showing a preference for the bear cub growl. Ultimately the timing is perfect, as Cal volleyball season has started and we're hoping to attend a game soon. Go bears!

 

His visual field deficit is now barely noticeable. He does startle from time to time if you come toward him from his left periphery, but he is otherwise tracking 180 degrees, he turns his head both directions to sound, and he most definitely recognizes his name. He loves to gnaw on his teething biscuits, he thinks squeaker toys are hysterical, he intermittently bears complete weight on his legs, and we're seeing just the beginnings of creeping when he's on his belly. He is not yet caught up to his adjusted age of 7-months, as he is not sitting up unassisted or rolling from front to back, but he is catching up quickly and I have faith that one day he'll find himself ahead of the curve! His brain is unbelievable and his new neurologist out of Stanford attested to the fact. She says he should be the poster child for brain resection surgery! She couldn't believe how incredible he looked!

 

We continue to have four sessions of ABM therapy per week in San Rafael, and my gratitude is unending for your generous donations. Thank you again for eliminating the financial barriers that would otherwise limit our access to such tremendous healing! His therapists marvel at what he has overcome and the way in which he continues to overcome.

 

- In my last post I wrote of our newest incidental finding related to Zacchaio's right humerus bone. Following further review of his ultrasound they realized that whatever they were looking at was extraosseous, or outside of the bone. This "something" (likely a tumor per the physicians) has been putting pressure on his bone long enough to have caused it to erode half of its width. On Friday Zacchaio will have an MRI of his arm as well as a full-body bone scan while under anesthesia. The MRI should give us a good idea of what exactly this large mass is, and the body scan will show "hot" and "cold" spots which signify overactive and underactive bone activity/metabolism. We'll have a follow-up with an orthopedic surgeon five days after the scan so it's likely I won't post an update until after that meeting when a short and/or long-term plan has been established. I'm taking a deep breath heading into Friday and will continue to pray that whatever they find will be manageable.

 

Erosion of Zacchaio's right humerus

 

- A plastic surgery surprise. After rescheduling plastic surgery multiple times due to acute illness and uncontrolled seizures, we finally had a surgery date of December 5th. The problem with having a date so far in the future is 1) Zacchaio's health is incredibly unpredictable and there is no telling whether or not he will be healthy enough to keep it, and 2) we are nearing his one year birthday (January 9th) which means his scalp will inevitably be much less mobile and malleable, decreasing the chance of complete removal of his scalp nevus. The wonderful news is that an October 24th surgery date became available and we were given first claim to it! The bad news is that this happens to be the same day as Aidan's brother's wedding. Unless anything changes, Aidan and Alkaio will attend Evan and Beth's wedding in Arizona while Zacchaio and I send our love from afar.

 

The plan remains the same with plastic surgery. Remove as much of his scalp nevus as possible (without leaving the incision too taut), remove the large cutis aplasia (area where skin didn't form completely) and large lipoma (fatty tumor) toward the back of his head, and remove all the smaller cutis aplasias on the right side of his head.

 

- Although Zacchaio had a clinical baptism in Cleveland prior to brain surgery, we had the opportunity to complete his baptism in our own church last week with two phenomenal Godparents. Fr. Nebo and Presbytera Stephanie have not only taken our son under their spiritual wing, but have blessed our lives in more ways than they know by joining our family. As much as I would have loved to open the baptism for all to attend, there was no telling whether or not Zacchaio would be healthy at any particular date or time so this was incredibly last-minute. God willing, we hope to celebrate his 1-year birthday in your spirited presence, surrounded by your unbridled love and support!

 

As a family we are taking off next weekend for UCLA Children's for a second opinion from a neurologist who specializes in infantile spasms. During downtime we hope to find an opportunity to introduce Zacchaio to the ocean and beautiful sand of Venice Beach for the first time!

 

 

September 2014

 

Trying to keep up with big brother!