Little Hero ~ Zane Leland Madaus

When I was pregnant with Zane, we knew there was something wrong, but we didn’t realize to what extent.  I had very high fluid during my pregnancy which indicated that he was not swallowing.  He also had a very large head so they guesstimated he would weigh 15 pounds which he didn’t! Thank God!  He was born at 11 pounds 5 ounces and we were relieved about that!  After he was born he was not swallowing well, and couldn’t drink enough from a bottle to gain weight on his own.  They suspected that something genetic might be wrong with him.  We spent a month in our first NICU trying to feed him until we consented to getting him a G-tube (where he eats through a tube to his stomach).  When we were transferred to the Children’s Hospital of Wisconsin, he was greeted by many, many specialists who kept us very busy playing mystery diagnosis.  The geneticists sent tests for three different syndromes, and one of those was Beckwith Weiderman Syndrome.  Some signs of Beckwith Weiderman matched our son, but the geneticist wasn’t convinced enough to be certain.  She ordered an ultrasound of his belly to check for enlarged organs because that would convince her he has it, which is what the rest of the genetics team thought he had.  When they did the ultrasound there were no enlarged organs, but instead they found a mass in the center of Zane’s abdomen.  That surprised EVERYONE!  We got the news, and to be honest, I never really cried.  I worried a lot.  I think I was having a heart attack for a week straight, while they sent him through all the scans to check what the mass was, and if it had spread.  Each scan he had to be put under general anesthesia every single time. Our son has a lot of breathing issues and a floppy larynx and trachea, so general anesthesia was scary, and the fact he possibly had cancer, and that it had possibly spread was even scarier.

I felt bad for my baby because of how hard this would be for him.  We loved him so much and I don’t think any parent can be told, “your child has cancer” and not feel like, “what if I lose him?”

Zane had the prettiest red hair color, and I just wanted so bad to get him out of the NICU for one day so I could get some cute photos of him taken with that reddish hair, before chemo would take that all away.  When we found out he had cancer, I was preparing myself to stay there for a year or more if I had to, and make it part of our lifestyle.  We got extremely lucky though.  I cannot even stress how grateful we are to have all the doctors in our son’s life.  We have had exceptional care from the very beginning.  They found his tumor when he was one month old.  They removed it a week later.  Zane’s tumor was nestled snuggly between his aorta and vena cava (both largest vein and artery in your whole body coming directly off your heart).  If our doctors did not find that mass he would have spontaneously died and we would have been shocked.  The tumor would have just grown and grown until it cut off circulation to those two major vessels.  They removed it and we waited 5 hours in the waiting room on the edge of our seats, while they used teeny tiny instruments to remove a mass next to his most vital vessels.  I kept wondering, “what if they don’t get the whole tumor out?”  Well our prayers were answered and the whole tumor was removed safely with no complications.  Zane spent about a week in a coma like state.  He was on a ventilator and multiple machines and kept highly sedated while recovering.  That was very hard to see, and I could not wait for the day to hold him in my arms again, and get him off all of the machines.  We sent his tumor to pathology and it was confirmed – neuroblastoma.  He had the less aggressive strain and said he was only a stage I or low risk.  That was the very best news any mom could hear.  Since he had neuroblastoma they were tipped off to another genetic disorder to test, and that one ended up being a winner.  We found out a few months later that Zane had a spontaneously mutated gene and had Costello Syndrome.  Costello Syndrome affects 200-400 people in the entire world (1:24 million). It puts him at a 17% increased risk of cancer, and he is 6th Costello to get neuroblastoma.  He is also at an 85% risk of having a heart problem.  At the time he didn’t, but a few months later he had an enlarged heart.

Zane has trouble breathing and he cannot eat by mouth. In fact now he eats through a GJ tube (to his intestines), and we found out that he is mostly blind (he can only see light that we know of).  I love this little boy; he is the cutest little doll you ever did see.  His body is unproportional. His height in the 2% or less for his age, his head in the 97% and up for his age. So he looks like a little person with a very big head.  Zane leaves an impression everywhere he goes to everyone who hears his story.  He inspires people to be more grateful for the small things in their lives; he inspires them to want to help other people, mostly kids. He inspires them to feel a little less sorry for themselves and their situation.  He is a hero just by being himself.  He has a big purpose on this earth; this rare bear was sent to us with a purpose of changing the lives of many people.  Zane beat neuroblastoma, but it doesn’t mean he won’t get it again.  He is also at a very high risk for rhabdosarcoma, and a smaller risk for bladder carcinoma.

Right now he is being scanned every three months, and every single one gives me a “hold your breath” kind of heart attack for a few days, while I hope and pray that we don’t get an aggressive cancer next time.

Zane had a very low risk cancer, had a life saving operation to remove his tumor, never had to do chemo or radiation and we could not be happier.  When they tell us about a new diagnosis he has for this or that, we always just remember that we could have lost him, and then all the work it takes, and the worry, and the heart ache, just does not matter.

We are just so grateful to have Zane in our lives.

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