Lost Job but Making Progress

Dustin officially lost his job as of April 1st. This is a very scary time for Dustin and Rebecca as they no longer have any dependable income. Beginning May 1st they will need to begin paying for COBRA so Dustin can maintain his health insurance, but this will be very costly. They estimated for it to cover Dustin, Rebecca, and baby Michael that it would be approximately $1,500 per month + the $5,000 deductible, so $23,000 per year.  We are trying to bring that number down by finding other programs for Rebecca and Michael since they do not have pre-existing conditions and should be able to find alternative forms of healthcare for less of a premium.  We are also looking into the CHIP program for Michael. We have also started the process for disability, social security, etc. for Dustin.


Despite the financial downfall, Dustin has been making great progress in his physical therapy lately. He has been able to push himself and walk short distances with a quad cane now several times per day!  He is feeling stronger and more balanced, although he still gets pretty tired a lot. He goes to outpatient PT 3 days a week. Occupational therapy is unfortunately not covered by insurance so he has been practicing doing exercises with his left arm, wrist, and fingers at home. He has made progress with the left arm, but it’s a little slower. This is one of the more frustrating things for Dustin. We just take it one day at a time.


Dustin Rebecca Michael at the Park


As for treatment therapy, Dustin is still receiving Avastin IV infusions every other Wednesday and he is still tolerating that fairly well. His radiation therapy was completed in March and he will not have to do any more radiation as far as we know. In about 2 weeks, Dustin will begin his Temodar (chemo pill) treatment again, but this time it will be more than double his previous dosage and will be taken with the following schedule: 5 days straight of taking the pill, followed by 23 days of not taking the pill. This cycle will continue for quite possibly 12-24 months.


Dustin is still being weaned off of the steroids and other medications. Thankfully he hasn’t had too many headaches which hopefully means the swelling in his brain is minimal. Last week when they did his blood work, his liver enzymes were pretty elevated. They switched his anti-seizure medication because they were thinking that might be causing it. Hopefully his levels will return to normal soon. He has also been experiencing some delayed side effects of the radiation. His taste and appetite has been lacking and his teeth have been very sensitive.


Dustin has his MRI scheduled for next Tuesday, 4/16. It will be reviewed by the doctors here in York as well as the doctors at Duke. They will advise us on any further treatment pending the MRI results. We remain hopeful.


“While we’ve gotten into somewhat of a routine at home and with all the PT and doctor’s appointments, each day is still a challenge. Daily activities are still difficult and having a 1-yr-old trying to learn to walk right now, who’s teething, been sick quite a bit, and is now beginning the tantrum phase of toddlerhood, our days are far from easy. We are so fortunate to have my parents around 24/7 to help because we couldn’t possibly get through each day or night without them. We have to depend on them more than we’d like, but thank God we are blessed with the help. “

One Response to “Lost Job but Making Progress”

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