Zane was born with neuroblastoma, Costello Syndrome (a very rare genetic disorder), laryngo & trachea malacia (trouble breathing), and dysphagia (trouble eating, he eats through a GJ Tube and nothing by mouth). A few months after his birth he also developed an enlarged heart (left ventricular hypertrophy) and obstructive sleep apnea (he now wears oxygen when he sleeps), we also discovered that he is mostly blind but can see light, he has Optical Nerve Hypoplasia in both eyes.
He spent two months in the NICU fighting his cancer and figuring out who he is and what was wrong with him. After they removed his tumor, he was cancer free! He did not need chemo or radiation, but his surgery was very major and intense. He spent a week on a ventilator, then weaning him off oxygen and he eventually came home.
After he came home he started displaying unusual symptoms of not being the same. He had dancing eyes, tremors, panic attacks where he looked absolutely terrified and was very irritable.
This landed him another hospital stay where he had another surgery to help his breathing, put him on anxiety medication and diagnosed him with Opsoclonus Myoclonus Syndrome which is an auto immune disorder where the antibodies he built up to fight his tumor started attacking his brain after the tumor was removed. It only happens to 2-3% of neuroblastoma kids and there are only 3 OMS specialists in the country he can see. It is treatable but not curable. In February we traveled to Mayo Clinic in Rochester, MN to get a second opinion on this diagnosis as he started improving completely on his own without treatment. Our specialists here also said they do not specialize in OMS and suggested we see someone else to get advice and a treatment plan. Please read my page “What Mayo Clinic did for us” to learn more. While at Mayo Clinic we resolved he does not have OMS and instead we discovered he is mostly blind.
Zane has had 5 hospital stays at 8 1/2 months old now. We are constantly back inpatient as we discover and learn more about him. Stay #1: NICU for two months (GTube Placement and fighting Cancer). Stay #2: Mystery Diagnosis/Opsoclonus Myoclonus Syndrome and Supraglottaplasty Surgery (trimmed tissue by his airway to help him breathe) 10 days. Stay #3 bronchiolitis (common cold that he just could not handle with his breathing problems in tow. so suctioning, steroids, breathing treatments. only three days) Stay #4 I brought him in at 2am for blood coming out of his Gtube, 4hours later he spiked a 104.9 F. fever while in the E.R. over the next 20 hours he would have an elevated heart rate over 220bpm, maintaining the high fever with seizure like activity. After trying to sedate him 3 times and giving him anti seizure meds he finally stopped and all vitals returned to normal 3am the next day. That hospital stay lasted about a week. EGD Scope was done and the Gtube bleeding was from the balloon of his gtube rubbing against the opposite wall of his stomach, we switched him to a GJ tube (to his intestines not stomach for multiple reasons) Stay #4 Woke up to finding Zane blue and barely responsive, took him in to the hospital, his oxygen saturation was only a 30, no pulse in feet, blood sugar a 40 (very low), and mucus filled in his lungs. We did two weeks even of breathing treatments, CPAP to stabilize him, lots and lots of oxygen. Discovered he cant hold his saturation level and came home with oxygen, pulse oximeter, nebulizer (total of 5 machines now in our house) and added pulmonologist to our team.
Believe it or not with all this little boy has been through he is SMILING all the time! He loves life, he fights hard and I see him improving every day! He can now almost hold up his own head! He has mastered playing with simple toys like rattles and balls, can reach for things! And we are in the process of switching therapy companies to also add on vision therapy for him. They can do amazing things with light tables. Put shapes or colors in front of a light table (picture a transparency machine from back in school :)) and he can actually see things this way! Very excited to get that started! Daily its just a routine of meds, breathing treatments, oxygen on and off as he sleeps and wakes, appointments down to about once a week, taking small drops of water by mouth, and working on exercises to help him hold his head up!
We have our plane tickets and hotel reservations for our trip to Florida! this summer! We are going to the Costello Medical Conference in Orlando from July 28 to Aug 6th. We have lots of fun stuff planned and lots of serious stuff planned! Our fundraising is going well and were able to earn our registration to the conference from that and everyone helped a lot for our Mayo Clinic trip. In Florida we plan to take the kids to Sea World, Disney World and Kennedy Space Station. I will take Zane to meet researchers and doctors who have been studying Costello syndrome. They will be able to look at him and add him to several research studies and then I will attend seminars where they share the information they have found from their studies over the past couple years. We will get to meet other Costello families (which is HUGE with something so rare) and attend a family day and they also have a dinner and dancing evening planned for everyone on the last day of the conference! This is going to be HUGE! for our family!
Thank you to everyone who constantly follows Zane’s story, prays for us, donates! Every little bit really helps us all get through this!