ONE.

Zacchaio turned ONE on January 9. He lived to ONE. He is thriving at ONE.

 

We had the privilege of hosting "Zacchaio's 1st Birthday: A Celebration of Survival!" the following day, and it couldn't have been more perfect. How does one describe one's feelings when one of his or her dreams comes true? As I've shared before, I have many dreams for Zacchaio. Different dreams are reserved for the different iterations of time God continues to grant us; Does he make it to one year, five years, twenty years old? Since the day we learned of Zacchaio's syndrome and its subsequent incompatibilities with life, I began envisioning the day we celebrated ONE. For hours I was high on the miracle, the glory, the healing, the journey, the outcome, and the unconditional love that every person walking through the door held for our son.

 

Thank you all for making a mother's dream come true.

 

Displays at the front of the room offered an experience of a Day In the Life of Zacchaio.

Walk His Walk

Due to Zacchaio's right-sided hemi-hypertrophy, his right leg is presently just over 2 centimeters longer than his left leg. This current length discrepancy will equate to approximately a 2.25 inch difference as a grown man. The plank walk simulated his gait without interventions such as shoe lifts (as a toddler) or growth plate ablation surgery (as a 12-year old).

Mirror, Mirror on the Wall

Zacchaio's skin malformations, the sebaceous nevi, are overgrowths of the sebaceous glands that manifest as pink, yellow, or brown waxy hairless plaques. Though small isolated sebaceous nevi are commonly found in the general population, Zacchaio has them all down the right side of his body. Guests were asked to place a birthmark on themselves and wear it proudly, as Zacchaio always will. It was heart-warming to see how many embraced the activity.

 

See Like Z

Though Zacchaio had three lobes of his right brain removed in August of last year, the removal of the occipital lobe specifically caused permanent blindness in the left half of his visual field in each eye. Guests wore simulation goggles and attempted to build a three-story block tower...

 

 

Zacchaio's spatial awareness continues to improve. A month ago we found him having frequent run-ins with walls on his left side (that would come out of nowhere!), however he has since continued to prove his adaptability by learning to cautiously scan his environment and more heavily rely on other senses. 

 

To highlight the many obstacles Zacchaio surmounted in his first year, we created a 12-minute video, "The Story of Z."

Thank you to our family, our friends, and Aidan's former students for helping to turn the mere idea of this day into a blissful reality.

God bless.



Skeptical of his first non-pureed food experience...

 

Bring it on!

 

 

 

Happy Birthday, Sweet Boy.

I've cried tears of joy all day. Today our baby boy turned one. Against all odds he is thriving! Exactly one year ago today, our lives were turned upside down and backward. Though I never imagined going down this beaten path, I'm so grateful for the beauty I get to witness on a daily basis because of it. Our Zacchaio is unyielding. He is a teacher. He is my hero.

Happy Birthday to the miracle of all miracles!

May God help us witness our son's positive change on one another and this world for years to come.

Tomorrow we celebrate!

What: Zacchaio’s 1st Birthday: A Celebration of Survival!

When: Saturday, January 10th at 12:30pm

Where: Coptic Youth Center at 2500 Hansen Road, Hayward, CA 94541

RSVP: alexis.kt@gmail.com or 510.710.9094
(if you haven’t yet RSVPed to the Facebook event)

New Developments

Aww Genes!

Genetic testing results came back on Zacchaio's scalp nevus tissue (biopsied during his plastic surgery in October). The meeting with the geneticist was long and didn't offer much positive news. Zacchaio has a mutation of the KRAS gene. Since he was first diagnosed with his syndrome, we knew it was caused by one of two mutations (KRAS or HRAS).  KRAS is less frequently seen in LNSS cases (1%) and Zacchaio has the rarest form of the KRAS mutation.

KRAS is one of the most frequently mutated oncogenes in human cancers. A mutated KRAS directs cells to grow and divide in an uncontrolled way. This mutation has been found in high percentages of pancreatic cancers (90% of cases), lung cancers (25% of cases), colorectal cancers (50% of cases), as well as some stomach, esophageal, and thyroid cancers and leukemia. ::insert deep breath here:: Due to the role KRAS plays in cellular pathways, those who have cancer and the mutation are rarely treated with chemotherapy because it is ineffective. Despite continued efforts, there is no known treatment to stop KRAS' function.



What does that mean for Zacchaio? A plethora of proactive screening. He is at a much higher risk of developing the above cancers as well as secondary melanomas of his nevus skin. We are now also plugged into a GI doctor (to monitor his digestive system), an oncologist (to dictate screening frequency), an endocrinologist (to monitor his thyroid and hormone levels), and a GU doctor (to monitor his urinary system). Because treatment options are limited if Zacchaio were to be diagnosed with cancer, there isn't a single body system we can afford to overlook. We will likely alternate between ultrasounds and MRIs of his entire body to keep a watchful eye on any developing tumors/malignancies.

Dem Bones!

We received official biopsy results for Zacchaio's right arm bone tumor. UCSF had difficulty making a differential diagnosis of the tissue, so they forwarded the sample to the Mayo Clinic for further evaluation. The tumor continues to baffle physicians and pathologists. The next few sentences will contain loads of medical jargon, but I like including it in my blog in the event that there are others searching for similar diagnoses. His tumor has features of a nonossifying fibroma (a common benign bone tumor seen in children), but the spindle-shaped cells are too small for what is typically seen in a nonossifying fibroma. Doctors do NOT see evidence to suggest a malignancy. Zacchaio's lesion has unusual features associated with scalloping of the cortex. Some features suggest it's an intracortical lesion, but based on the x-ray it seems to have a benign appearance.

Since receiving these results, I have e-mailed a few of the top orthopedic departments in the country in hopes that they have seen something that resembles above description. We'll see.

I wasn't thrilled with our last orthopedic visit with UCSF, so we visited a Stanford doctor for a second opinion. He recommended another xray, which I agreed to, as I was anxious about the progression of the tumor. You can see from the picture above that it has grown quite a bit since August. Although the growth is quite alarming and one would logically assume his condition was worsening, the physician said it actually looked better! The cortex of his entire bone looks healthier and stronger. His humerus bone is also behaving in a more "normal" way in that it seems to have further quarantined the tumor with a more distinct border. Zacchaio's arm doesn't appear to be bothering him at all; he is still weight-bearing without any visible discomfort. He will have a skeletal survey (full-body xrays) at the end of January to check for tumors in any other bones.

Brainstorm!

OMG...another EEG!

First EEG since August 2014 brain surgery

Zacchaio had a 1-hour EEG last week and was incredibly cooperative with lead placement and fell asleep at the technician's request. We just heard back from the neurologist, and although there were rare spikes (bursts of electrical activity), he reiterated there are absolutely no seizures present. This is great news! We still have quite a few questions for the neurologist regarding spike origination location, whether there will be changes to the anti-epileptic drug weaning plan scheduled for February, etc. We will let you know more as we learn more!

MapMyCrawl!

Those of you who follow on Facebook are already aware; those of you exclusively on Zacchaio's blog are not yet. The Anat Baniel Method (ABM) therapy Zacchaio attends each week (3-6 sessions) has been absolutely tremendous for his development!



Fun with ABM practitioners Sylvia!

A month ago, Zacchaio was quite behind developmentally. When I last posted we were celebrating his rolling from front-to-back and back-to-front. On Thanksgiving morning, Zacchaio surprised us with...




...and within a week he had advanced to...

  

...and right after I posted this blog, he did this...

  

Today he keeps trying to sneak through the kitchen and out the garage door for some outdoor play with his brother! He has almost caught up with his 9-month benchmarks... There is no containing his excitement for the world and the people in it! Given where we started 11 months ago, I never imagined we would find ourselves here today, almost to Christmas with a beautifully decorated tree, a hilarious 4-year old ham, and a remarkably joyful 11-month old who makes every attempt to undecorate the aforementioned evergreen. Everywhere we go, the festive atmosphere reminds us of the miracle we will be celebrating on Christmas Day. We are so grateful for His love and healing, the continued miracles we witness, and the joy you all bring to our lives.
 

 

Wishing you all the Merriest of Christmases! May God bless you with his love and peace, and may you find joy in every minute of every day!
 

Also, please refer to our previous post, "Save the date!" We would love for you to join us for Zacchaio's 1st birthday celebration!