Micah made for Miracles
On December 20,2019 our worlds were completely flipped upside down. I found myself rushing my 4 year old son, Micah, to the ER with what I thought was the onset of appendicitis. With a series of scans of his abdomen, and unbeknownst to us, the hospital discovered that Micah had a large tumor growing around his adrenal gland and lungs mets.
Micah was immediately transferred to St Joseph’s Children’s Hospital in Tampa that night for monitoring. The next day my wife, Heather, and I met with his team of oncology doctors to discuss their thoughts on what type of cancer we were dealing with, along with next steps on what to do with this tumor. As you can imagine, this was a complete whirlwind of emotions for us - shock, fear, extreme sadness, anger, and confused on what this cancer was and what to do to keep him alive.
We had one Doctor telling us she didn’t think the tumor could be removed, then a Surgeon hours later telling us she was determined to go in and cut it out. With our strong Faith in God, and after many prayers for direction, and knowing some things that God had already spoken to Heather, we determined that allowing the Surgeon to move forward was the best case scenario for our Micah. So we did. The Surgeon actually took it upon herself to move his surgery from its original scheduled day to earlier, on a Sunday, on a day and time the hospital was not even equipped to perform such surgeries for children, and a day our Surgeon is normally off. This decision proved to be one of many situations that saved Micah’s life. Let me explain - when the surgeon went in to remove this very large tumor, the tumor began to rupture. Thankfully, this amazing Surgeon was able to remove 98% of it, while the rest spilled into his gut. The Surgeon told us that if she hadn’t moved the surgery to the earlier date, Micah most likely would not be with us today.
After a couple of weeks trying to figure out the pathology of this tumor, the original thought by the doctors at St Joseph’s Children’s Hospital was that Micah had neuroblastoma, but weren’t completely sure. They sent the tumor away to get a diagnosis. At our request, we asked to have additional sets of eyes on this tumor to determine the absolute correct pathology and diagnosis. We had the Mayo Clinic, we had a Hospital in D.C., and we had St Jude all looking at this tumor. It was determined to be an extremely rare form of cancer called adrenocortical carcinoma, known as ACC in the oncology world. This diagnosis is 1 in a million and has a 10-14% survival rate. Micah is considered stage 4 due to the cancer spreading from the original site and into his lungs.
ACC is an extremely aggressive cancer and requires an equally aggressive treatment plan. It was explained to us that this is one of the hardest protocols for children and the majority of them do not make it past the 3rd or 4th treatment due to their bodies not tolerating the harsh side effects, like severe hearing loss, organ failures, and their bodies not responding to the treatments ultimately resulting in the low survival rate. This particular protocol calls for, if tolerated, 8 rounds of in-patient IV chemo, along with an additional chemo, Mitotane, that is administered orally so that it can attack this specific type of cancer. The beginning phases of this harsh protocol was extremely difficult for Micah, and for us as parents. By this time Micah had endured a major surgery to have the tumor removed, and, another to have a G Tube put in his stomach in order for him to take his oral chemo, Mitotane, more easily. Micah was understandably struggling with nausea, nonstop throwing up from the IV chemo, wasn’t eating, and he refused to take the oral Mitotane every 4 hours, 4 times a day. It was extremely stressful for my wife, myself, and the nursing staff to hold Micah down and try to force the Mitotane down his throat. So one day Micah woke up from a dream and yelled, “Mommy, there’s a tube in my belly.” My wife looked at him puzzled and said, “aww buddy, you were just dreaming, there’s no tube in your belly.” He lifted his shirt and pointed to where he thought it was, but it wasn’t there, and he said, “it’s gone!” A few hours later a nurse came into the room and asked my wife if she had ever considered putting a G Tube in so that he can easily receive his Mitotane. That was our answer, so we moved forward and had his G Tube put in.
At this juncture we knew our next mission was to find better nourishment for Micah. Chemo takes a toll on the body and he wasn’t eating and was losing weight fast. We also weren’t on board with what the Hospital allowed for nourishment because it was essentially whatever - meaning, sugar-packed foods, and sodas, basically anything, just as long as he was eating. We became avid researchers in nutrition at a hyperbolic rate in order to save our son’s life in an integrative way. This is when we discovered Liquid Hope, Your Superfood, organic goat milk from Switzerland, essential oils, and even had a Nutritionist to assist us in ensuring Micah’s body was getting what it needed.
During Micah’s first couple of rounds he ended up catching the Norovirus requiring him to remain in-patient and quarantined for an additional week for monitoring. On the day he was cleared to come home he then spiked a fever so high that the hospital thermometer was maxed out - 105 degrees. The Nursing staff discovered he had a port line infection and he would be required to remain in-patient another 2 weeks. This resulted in Micah and my wife being in-patient for a month straight and then right into the next round of chemo. All the while I was at home with our 6 other children, ranging from 10 mos, 3, 7, 10, 13, and 16, trying to keep up with the house needs, the children’s needs, and going back and forth to the hospital to see Micah.
Early on in this journey we had the feeling we needed to get Micah to St Jude someway, somehow. I hadn’t been back to work because I was first on a paid leave from December 20, 2019 through January 29, 2021. During this time several things were in divine motion. The first, we had met a family on Facebook who had a daughter go through the same scenario and they shared with us the name of an expert doctor they were working with long distance that was at St Jude. So we reached out to this Doctor immediately to discuss Micah’s diagnosis. He told us that because of the rarity of Micah’s diagnosis, there were no open studies for out of state children. He said that he would work with our doctors. One of the doctors tat St. Jude wrote the only study on ACC, we knew we needed an expert. But how? I am on a Leave of Absence. But God...this brings me to the second thing in motion.
My amazing employer, Bank of America helped us get to St. Jude. I applied for my role in Memphis Tennessee, where St Jude is located. I applied as an external candidate because I am on a leave, but I had to do whatever it took to get my son in the best possible care at St Jude. They made it possible for me to transfer to Memphis. I notified St Jude and my wife and Micah were on a plane a week later to be admitted into St Jude. Faith moves mountains and opens doors that seem impossible.
This left me with packing up our home, with 6 children, and find/buy a house near St Jude, and do so within a month. But God...Micah was admitted into St Jude on February 24, my birthday, and we closed on our new home in Collierville on March 25.
Here we are today, Micah finished with 7 rounds of the protocol, still receiving Mitotane and many other various medications to help with his only adrenal gland not functioning, and trying to get started on his integrative journey. We hired an integrative Doctor who wants to use mistletoe injections and IV Vitamin C to help build his body’s immune system up so strong that cancer cannot function or spread. His cancer is a result of a gene defect in his TP-53 gene and has a 95% reoccurrence rate. So integrative is extremely necessary. But it’s not cheap. We were hoping St Jude would be able to pioneer this integrative journey for the first time in its history, but due to Tennessee law, and lack of research they are unable to do so. So all of the costs are out of pocket for us, but extremely necessary to keep Micah alive.
It was also recently discovered that Micah tested extremely high in 2 areas that need immediate, fast correction in order to prevent the opportunity for the cancer to return . We are in a desperate need to purge his body of both.
I say all of this as a Father and on behalf of his Mother, working so hard to keep our son alive, but in desperate financial need. I still have not returned to work due to covid. We also still own our home in Tampa, due to a titling error made back in 2016 causing the sale of my home to fall through and losing the much needed proceeds to pay for Micah’s expensive integrative care and pay for a Nanny to assist us with all of our children so I can return to work. And with Covid-19 happening on top of this, hiring a Nanny right now may not be wise because of how contagious it is; we simply cannot put Micah at risk. We are financially stressed and need help. Please consider helping us.
This fund will help with housing, food, many bills, medical needs, and everything associated with integrative care. St. Jude by law can not cover expenses for the integrative part, however they are supporting our choices in walking this out because we are not on a study.
You’re invited to follow the journey our our family on Heather’s caring bridge.
Micah James is made for miracles ♥️⛰
https://caringbridge.org/visit/mightymicah2
With thankfulness,
Bobby Ternahan