Two Days After He Died, This is What I Wrote

Many of you have been wondering about what it is that took Gavin’s life. How could this happen to such a beautiful young child? I have been meaning to write something up for all you amazing prayer warriors who have been battling with us for so long now, but I just haven’t had the time. I also haven’t had the courage. I have been so busy fighting for Gavin’s life in every way, plus trying to just be a Mom, clean the house, get the boys to school, do the laundry, feed the faces… I honestly wasn’t ready to go essentially public, with those details. At this point it’s my therapy… so here goes.

For those of you who do not know, all three of our boys were born with a primary immune deficiency called CGD or Chronic Granulomatous Disease. Currently, the only cure is a bone marrow transplant. In lieu of a transplant, they take daily meds to manage their condition, get interferon shots three times a week and in general, they are very healthy. We pay strict attention to nutrition, hygiene, get plenty of sleep and drink plenty of water. They have been raised from birth, to think healthfully, eat whole foods, stay away from sugar, and be aware of their health as well as their susceptibilities. For a long time, despite all the footwork behind the scenes, we made living with this condition look pretty easy.

On Monday morning we lost our youngest son Gavin, essentially to complications of this disease.

In January of 2013, at age 4, our sweet, cute, active, silly, smart-as-a-whip, crazy little Gavin was diagnosed with Invasive Pulmonary Aspergillosis (a fungal infection of his lung), and it was a catastrophic blow to our family. It was about the worst kind of infection to get, for someone with this type of immune deficiency. Over the next several months, the team of specialists at Children’s Hospital who we had been seeing for the last 12 years changed up his drug regimen a few times and ultimately advised us that his left lung needed to be removed to try and clear the infection from his body. There was also indication that the infection had reached the fluid sac around his heart, and the areas around his artery and heart valves that pumped to his left lung. Right lung was totally clear. He also had some kind of a mass (assumed to be fungal) behind his heart that wouldn’t let his heart rest completely between beats. That surgery took place in May of 2013. They had done the best they could, the rest of the infectious matter was in areas they could not get to. After waiting 8 hours in the surgical waiting room, that was the news, other than he had survived and was stable.

That is when the darkest cloud of all descended upon us: there WERE NO DRUGS that were going to be able to kill this infection. Anti-fungal drugs were only suppressive, if they caught the infection at the right phase, and his own body couldn’t kill it off. Ever. It was at that moment, I started tirelessly searching the internet, and shockingly – there were all sorts of things that came up that would inhibit and help kill a fungus. As hopeful as I was, we were still numb and scared. We feared the damage had already been done, and we knew it would be an uphill battle.

Until that point, it just hadn’t occurred to us that these doctors and specialists don’t look at the entire universe of potential treatment options when treating you – they only look at pharmaceutical drugs and surgical options. Natural remedies are not even considered, despite the fact that there is definitive evidence that natural remedies work for all sorts of diseases and infections, and without the toxicity. Not only do they not know about natural remedies, they definitely discourage them.
(It’s like when you take your money to an investment manager, and they only show you the investment options in which THEY make a market or only the mutual funds that THEIR people manage and can make money off of, twenty ways to Sunday. You think they’re going to tell you that? I worked in that business for many years. I know how it works.) The truth is, there isn’t any money in it – silver and oxygen and peroxide and herbs and DMSO and essential oils and vitamins and minerals and things like that aren’t patentable because HELLO… God provided them to us pretty free of charge, long ago. The damage had been done, and we now had to work with what we had left.

Eventually we got out of the hospital, although Gavin still had a PICC line in his arm and was taking a daily IV anti-fungal drug and an oral anti-fungal drug as well as an oral antibiotic. Truly, out of fear, they were prescribing and Gavin was taking those drugs because there was no room for further loss. We were scared to death, too. My knowledge was new, I had only hit the tip of the iceberg. One lung? Fungal infection in the heart valves? Oh, God… please help us!! At this time, our faith kicked into high gear. Our prayers changed from asking for anything specific to keeping it to the basics (Matt 6:7-8). The Lord’s Prayer. We trusted God, we trusted in His plan whatever it was, and Gavin knew his body would be healed either here on earth, or by going to heaven. We talked about it many times. He knew his mission was big, and that God had a plan for his life. He was to be a powerful living testimonial of faith and courage, no matter the outcome, but we always believed he would make it.

Over the next 18 months, I researched and read and learned about all kinds of things and tried lots of things to heal Gavin but most importantly, to get him off the drugs he was taking and figure out a routine for healing and future infection prevention. The doctors at Children’s of course wished us well but they didn’t know anything about those methods. They knew pharmaceuticals. They said ‘we could’ go get another opinion, but all these doctors are connected. The diagnosis and treatment would be more of the same. We felt incredibly alone. Nobody admitted to knowing anything much about natural methods. “Colloidal Silver is a heavy metal you know – bad news. IV hydrogen peroxide? That’s crazy! Ozone – that’s pollution” Yes, they weren’t preventing us from doing other things but they certainly weren’t helping us. They had already told us there were “no further medical or surgical options”.

In July, I read a book called “Flood Your Body with Oxygen” and it was a complilation of all the research I had pieced together over the past year, in one single place. I was so thankful and excited and finally had the courage to get started with Oxygen Therapies for Gavin. To get completely off the big pharma plantation.
Over the next three months, I saw amazing things. His body was cleaning itself out, detoxifying, his color was improving, killing this infection, and we really thought he was getting better. And he was. What we didn’t expect at all… was that his heart had been so weakend over the past 18 months of struggling with this infection and its ups and downs of trying this and trying that, that it just couldn’t do it anymore. Even he didn’t know it. We had experimented and worked with no roadmap for so long. The pharmaceuticals took a toll on his body as well. We tried so many powerful things. In hindsight, there were some signs, and I won’t go into details… but ultimately, his body was just exhausted – his heart in particular.

I had said in an earlier post that when I was pregnant with Gavin, I KNEW he would be the one to do something important for our family. I felt it. Originally, I thought it was going to be that he would provide a perfect sibling bone marrow match for his brothers, so they could be cured of their immune deficiency. But what he ultimately did for them, and us, was so much more than that. What God ultimately provided for us through Gavin’s life, and his illness, his courage, his love for his brothers, and our struggle in every way to help him… was this knowledge of how, when your body is in tact, how you can help your body heal itself and overcome any infection, almost any situation. There are natural things you can do and take that don’t come from drug companies or prescriptions that can act as your immune system for any parts you are missing. We don’t have to live within a 100 mile radius of a specialty hospital anymore. We don’t have to be afraid to travel. We don’t have to be afraid of a fever or of one of the boys getting sick, of ending up in the hospital at someone else’s hands. Many people can’t understand what that’s like… but to us, Gavin gave us freedom.

Ultimately, he did give the gift of health to his brothers. Gavin had a special mission for God, to provide the gifts that he did, and I believe he completed it. Gavin wanted to help share everything we learned, to help anyone else we could to not have to go through what he went through. He wanted to help other kids with his condition or any other immune deficiency, to have hope. He really was, “The Amazing Gavin”.

2 Corinthians 5:6-8 Therefore, being always of good courage, and knowing that while we are at home in the body we are absent from the Lord – for we walk by faith, not by sight – we are of good courage, I say, and prefer rather to be absent from the body and to be at home with the Lord.


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