Jul 16, 2019 Latest post:
Jul 22, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. This morning we are writing to share Jason’s story. On June 29th Jason went in for his annual eye exam. He was told he had Papilledema, swelling of his optic nerves. He was informed he needed to go directly to the Emergency department as this is sometimes of sign of various health concerns, even a possible brain tumor.
As most of you know Jason was diagnosed with ALL (Acute Lymphocitic Leukemia) at the age of 9. Jason was brought to the twin cities for treatment with multiple rounds of chemotherapy and full body radiation. Due to chemotherapy not working the next life saving step was a Bone Marrow Transplant. After a nation wide search a match was found with a man named Mark from California. Jason received a BMT at the age of 10. Due to the various life saving treatments he received as a child, the thought of getting cancer again has always loomed in the back of Jason’s mind. Hearing about a possible brain tumor shook Jason and he prepared for the worst. In the ER they found his blood pressure was very high. They began treatment for the hypertension and did a CT scan of his brain. At the end of the day they said they did not find anything alarming on the CT and he probably had hypertension. The facility suggested he go see his general practitioner for follow up and they sent him home with BP meds. Jason called many places until he found an in-network DR that he could get in to that Monday. His Dr ordered an MRI of his brain, meeting with a neuro-ophthalmologist, blood work & ultrasound of a small mass near his hip. He was able to get in for an ultrasound on Wednesday the 3rd where they found a soft tissue mass between his back & his hip. They are not concerned about this right now as this could be a side effect from the radiation he had from his bone marrow transplant when he was 10. Jason’s search to find an in-network neuro-ophthalmologist left him with a 3 1/2 month wait for an opening. Every turn seemed to be a road block. He was finally able to get in for an MRI on Monday July 8th. A radiologist read the MRI and informed Jason that he had a brain tumor & he should go see a Neurosurgeon. He called his insurance company, Ambetter, who informed him he needed to go their website to find an in-network neurosurgeon for coverage. After several calls from the listed in network providers we discovered most surgeons and facilities listed were not in network and had not been for more than a year. The one neurosurgeon we were able to get a hold of who was in network, told him that his surgery was outside of his area of expertise and he should seek help from someone else with more expertise and an advanced facility that could handle his case.
Stacey, Jason’s sister called in a favor from her friends and old co-workers/family from Abbott Northwestern Hospital in Minneapolis. Dr. Nagib, neurosurgeon, and a neuro radiologist reviewed the MRI as a favor to Stacey. They provided more insight to what Jason would be dealing with. The tumor needed to come out and sooner than later, within the next four weeks. It was also in a difficult spot to remove, wrapped around and basically occluding the sagittal sinus. Jason’s case just became even more involved than the original MRI report lead on. Dr. Nagib agreed to help Jason and an appointment is scheduled for July 26th. Dr. Nagib and his team have been beyond gracious in this process to help Jason and our family navigate this scary process. Because we are finding it difficult to get help & answers here in MO, we are trying to get the Insurance Company to approve him with a letter of exception to receive treatment in Minneapolis. A letter of exception would allow him to pay in network fees if the insurance and Allina (ANW parent company) can work out a deal for Jason’s treatment and care. If he had any out of network coverage we would be there already. That’s why this letter of exception is so vital. Studies have shown improved outcomes for patients with a support system available. Jason has a lot of family and friends in the twin cities area to help him with the long road to recovery after surgery. Of course, the hurdles are huge when it comes to healthcare, insurance and hospitals. The bottom line of all the companies far outweigh the patient begging for the best treatment and care. The team in the cities have been the one exception to this. We were able to finally get him in to an in-network Neurosurgeon next Tuesday in MO. We called back the neuro-optometrist to explain the importance & they finally got him switched to an appointment next Wednesday. We are continuing to work on getting him to Minneapolis where we as a family can help him & support him. We are waiting for an answer from Ambetter On his letter of exception to receive care in Minneapolis. Most of the days are spent on phone calls with Ambetters many divisions, Doctors offices, searching for any new avenues to explore in getting Jason the best care possible. Being self-employed there is no back up or FMLA options available. As we know more Jason, Stacey orMom will keep this site updated. We ask for your prayers for finding the right neurosurgical team to do his surgery, for guidance to that team as they do the surgery & for healing for Jason. May God bless each of you reading this & your family’s.