Braxton's Army
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Braxton's Story:
It was a typical Sunday morning attempting to brush our two-year-old son’s teeth. In the midst of a tantrum that’s when we first observed a mass on the roof of our son’s mouth. Thankfully the next day was already a scheduled dentist visit. The dentist spoke with an onsite specialist who then told us to see his primary as soon as we can. We were able to see the primary that very same day. His primary assessed the mass, then promptly left the room. The doctor needed to consult with an ENT. They both agreed to order a sedated CT scan. Once the CT scan was scheduled, we asked to be put on a cancelation list, due to the long wait time. Our appointment that was scheduled for a month out turned into a two week wait because someone canceled. Once the CT scan was done and the results were in, however our questions remained unanswered. Our primary referred us to the University of New Mexico Hospital. Our first doctor was a specialty pediatric ENT, Dr. Holley. After an initial visit Dr. Holley thought that the best course of action to best diagnose the mass was to perform a biopsy. Two weeks later our baby was sedated in another room while a team of doctors and nurses cut and examined his mouth and nasal cavity. The biopsy took two weeks before we got the phone call that would change everything.
“Your son has a diagnosis called ALK positive Langerhan Cell Histiocytosis.”
All we remember from that conversation is hearing the words “rare type of cancer” and “chemo.” After fixating on the words the doctor said all weekend; along with doing our own research on the diagnosis, we needed to call the doctor back that Monday. Now that we had time to think we needed her to re-explain this diagnosis and the next steps in Braxton’s plan of care.
She explained the next action in his plan of care would be to meet a pediatric oncologist, Dr. Harmoney. At our first visit with Harmoney she explained how Braxton’s diagnosis was essentially two diagnoses in one. The first part of his diagnosis (ALK positive) is a genetic marker found in 2-3% of small tissue lung cancer, and certain other malignant cancers. The second part (Langerhan Cell Histiocytosis) occurs in the white blood cells. What happens is there is overproduction of this type of white blood cell and it can form mass/tumors in or around bones, skin, organs etc. Because this condition affects the blood it could virtually be anywhere in the body. Therefore, we were on a hunt to see if it was anywhere else in Braxton’s body. This included x-rays of the entire skeleton, bone marrow biopsy, ultrasound, blood draws, and a sedated PET scan.
We started getting results back from each procedure that was performed. One by one the results came back and they were looking promising. However, the result of the PET scan showed some lymph nodes in his body ate up the radioactive sugar. This could be because Braxton is so young and still has fatty tissue or because these areas have been infected with the ALK positive LCH. Dr. Harmoney explained that we will not know for certain until after we start treatment if, at the next scan, the affected areas respond to the selected treatment we will know for certain that they were involved.
Now that the search is over, we move on to the next step, treatment. This part has become trickier than either of us could have ever anticipated. The targeted chemotherapy drug that Braxton needs will specifically target the ALK gene mutation. Currently there is only one pharmaceutical company that manufactures this drug Xalkori, Pfizer. When Dr. Harmoney first put in the prior authorization to our prescription insurance company they denied it. After being on the phone for hours with our insurance company and being transferred every which way we decided to file for an appeal. Meanwhile we found out that if we are approved the anticipated cost of just the chemo that he needs would be $2,080 a month. Our hearts sank thinking about how we were going to afford just that one medication. Now keep in mind that is just one of the medications Braxton will be taking. That is not including the other medications that he will need to take to manage side effects and prevent other illnesses that chemo patients are prone to. Once we got our appeal approved, and with the help from Dr. Harmoney, we were onto the next step of getting the medication from a pill form to a liquid form for Braxton to take. This is when we found out that the chemo is only made in doses suitable for adults. Also, this chemo has not been FDA approved in pediatrics. This means that instead of going through the insurance we will need to go through the drugs manufacturer to see if they can make the chemo specifically for Braxton. Due to Xalkori not being FDA approved we would need to get special temporary approval from the FDA, and approval from the hospital. Pfizer has agreed to manufacture the drug to meet Braxton’s needs with no cost to us. Currently, we have received approval at all ends for Braxton to start his chemotherapy at home. We started chemo Wednesday October 7.
We are asking for any donations to assist with upcoming expenses for Braxton. Any unused donations will be donated to the Histiocytosis Association for research and other Histio Families.
Braxton's Story:
It was a typical Sunday morning attempting to brush our two-year-old son’s teeth. In the midst of a tantrum that’s when we first observed a mass on the roof of our son’s mouth. Thankfully the next day was already a scheduled dentist visit. The dentist spoke with an onsite specialist who then told us to see his primary as soon as we can. We were able to see the primary that very same day. His primary assessed the mass, then promptly left the room. The doctor needed to consult with an ENT. They both agreed to order a sedated CT scan. Once the CT scan was scheduled, we asked to be put on a cancelation list, due to the long wait time. Our appointment that was scheduled for a month out turned into a two week wait because someone canceled. Once the CT scan was done and the results were in, however our questions remained unanswered. Our primary referred us to the University of New Mexico Hospital. Our first doctor was a specialty pediatric ENT, Dr. Holley. After an initial visit Dr. Holley thought that the best course of action to best diagnose the mass was to perform a biopsy. Two weeks later our baby was sedated in another room while a team of doctors and nurses cut and examined his mouth and nasal cavity. The biopsy took two weeks before we got the phone call that would change everything.
“Your son has a diagnosis called ALK positive Langerhan Cell Histiocytosis.”
All we remember from that conversation is hearing the words “rare type of cancer” and “chemo.” After fixating on the words the doctor said all weekend; along with doing our own research on the diagnosis, we needed to call the doctor back that Monday. Now that we had time to think we needed her to re-explain this diagnosis and the next steps in Braxton’s plan of care.
She explained the next action in his plan of care would be to meet a pediatric oncologist, Dr. Harmoney. At our first visit with Harmoney she explained how Braxton’s diagnosis was essentially two diagnoses in one. The first part of his diagnosis (ALK positive) is a genetic marker found in 2-3% of small tissue lung cancer, and certain other malignant cancers. The second part (Langerhan Cell Histiocytosis) occurs in the white blood cells. What happens is there is overproduction of this type of white blood cell and it can form mass/tumors in or around bones, skin, organs etc. Because this condition affects the blood it could virtually be anywhere in the body. Therefore, we were on a hunt to see if it was anywhere else in Braxton’s body. This included x-rays of the entire skeleton, bone marrow biopsy, ultrasound, blood draws, and a sedated PET scan.
We started getting results back from each procedure that was performed. One by one the results came back and they were looking promising. However, the result of the PET scan showed some lymph nodes in his body ate up the radioactive sugar. This could be because Braxton is so young and still has fatty tissue or because these areas have been infected with the ALK positive LCH. Dr. Harmoney explained that we will not know for certain until after we start treatment if, at the next scan, the affected areas respond to the selected treatment we will know for certain that they were involved.
Now that the search is over, we move on to the next step, treatment. This part has become trickier than either of us could have ever anticipated. The targeted chemotherapy drug that Braxton needs will specifically target the ALK gene mutation. Currently there is only one pharmaceutical company that manufactures this drug Xalkori, Pfizer. When Dr. Harmoney first put in the prior authorization to our prescription insurance company they denied it. After being on the phone for hours with our insurance company and being transferred every which way we decided to file for an appeal. Meanwhile we found out that if we are approved the anticipated cost of just the chemo that he needs would be $2,080 a month. Our hearts sank thinking about how we were going to afford just that one medication. Now keep in mind that is just one of the medications Braxton will be taking. That is not including the other medications that he will need to take to manage side effects and prevent other illnesses that chemo patients are prone to. Once we got our appeal approved, and with the help from Dr. Harmoney, we were onto the next step of getting the medication from a pill form to a liquid form for Braxton to take. This is when we found out that the chemo is only made in doses suitable for adults. Also, this chemo has not been FDA approved in pediatrics. This means that instead of going through the insurance we will need to go through the drugs manufacturer to see if they can make the chemo specifically for Braxton. Due to Xalkori not being FDA approved we would need to get special temporary approval from the FDA, and approval from the hospital. Pfizer has agreed to manufacture the drug to meet Braxton’s needs with no cost to us. Currently, we have received approval at all ends for Braxton to start his chemotherapy at home. We started chemo Wednesday October 7.
We are asking for any donations to assist with upcoming expenses for Braxton. Any unused donations will be donated to the Histiocytosis Association for research and other Histio Families.
Organizer
Evan Hubbard
Organizer
Albuquerque, NM