Jason’s Story

Site created on July 12, 2019

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.

Newest Update

Journal entry by Deb Jensen

Good morning,

    We hope this finds everyone safe from COVID and everything going on in the world today.

     I am sure most of you have been wondering how things have been going for Jason.  His 6 month check-up was supposed to be in May this year.  But with COVID in May, the hospital didn’t schedule the test.  So when things settled down in late June, and the hospital’s were at lower capacity, Jason asked when was appropriate to go in.

     So July 20 was the day they decided to get his testing done.  He went in the morning at 7:30 for his MRI & MRA.  He was to meet with the Neuro Dr. at 12:30 the same day.  He was done with his MRI’s by 9 am & went over to the DR.’s office early to wait for his appointment. They told him they could call him with the results if he wanted to prevent spending an extra 4+ hours in a hospital during a pandemic and he gladly agreed.

    True to their word, they called him about 12:30 & said there was no observable change in the tumor size & no change in blood flow, coming out of the vein in his brain, so that is great news.  Jason again decided not to have the radiology treatment for the remaining brain tumor yet beings there was no change to the situation or danger warnings from the doctors.  They also could see on the scan’s the area that his spinal fluid is still pooling up in his brain around the scar when his head is horizontal or lowered...like while sleeping.  Once he is up for the day it goes away & then starts all over the next day.  She said it is still doing this because the membrane is not fully healed yet.  Hopefully it will heal with more time but they will look at it again in 6 months.  He should keep walking and doing non-strenuous things however.  They want him to avoid getting his heart rate really high or spending too much time in positions that cause the fluids to pool to minimize aggravating the membrane tear so he can heal faster. So no running, power lifting or bench press type of workouts but regular activities are a go. May have to get a bed where he can incline his head to help with the spinal fluid, 50/50 chance it will help.  But might be worth a try.

    They would like to see him again in 6-8 months for MRA & MRI, to check how everything is doing.  And if everything is good they will make the next appointment closer to a year out.

    So thank you God for a good report & things to continue as they are.  We are truly blessed.  And Thank you to everyone who has been 🙏🏻 for him.

     Jason did find a Townhome in Woodbury this weekend, so we will see how that all plays out.  If all goes well he will be able to get moved into a new home in a month or two.  Then he can get his old home in St. Charles fixed up & sold.  Jason has done many small repairs around the house.  But with his higher risk status he did not want people in his house working on some larger projects he can’t complete himself in order to get his house On the market.  So lots of moving pieces in the near future.

     Jason is still cautiously looking for work.  With COVID going on, in an election year, nobody is really hiring or looking for additional help until things settle down. He has some head hunters looking and some potential short term work he hopes comes through.  I am sure once COVID starts dying down there will be opportunities out there for him.

     Thank you for all your concerns, asking how Jason is doing and all your prayers.  We know that prayers work and we continually feel blessed.

     Prayers that all of you & your families are staying safe, healthy and happy in these challenging times.  God Bless each of you reading this, and your families.  Hugs & prayers for all.    💕🙏🏻

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