Disability Hearing

25 Jul

Susie and I had an Administrative Law Judge Hearing on the 19th of July.  She applied back in 2008 for Social Security Disability.  After chasing her claim for three years, we learned in 2011 that her claim was denied.  The … Read More »

A Happy Mother’s Day

14 May

We’ve made it to the middle of May, which is no small feat considering Susie had a brain stem stroke two weeks ago.  This last week was a few steps forward.  Susie’s brother Doug was in town to help.  We … Read More »

The Season of Rebirth

2 Apr

Susie has completed four of eight weeks of Hyperbaric Oxygen Therapy (HBOT).  Middle of last week was quite hard for her.  She did not want to continue.  The treatment is not painful, but she feels very different after it.  The … Read More »

Two weeks into HBO Therapy

19 Mar

Two weeks ago, Susie started Hyperbaric Oxygen Therapy (HBOT) at St. David’s Wound Care and Hyperbaric Medicine Center.  Her treatments last two hours, are daily Monday through Friday and are scheduled for eight weeks.  The chamber’s pressure is increased to two atmospheres … Read More »

Hyperbaric Oxygen Therapy

18 Feb

It has been over a month since Susie started taking antispasmodics.  We were hoping to see neurologic improvement, but her condition is largely unchanged.  We met with her local Neuro-Oncologist this week for follow-up and to discuss next steps. First and … Read More »

A SMART Syndrome New Year

5 Jan

The end of 2016 has been a bit of a roller-coaster.  We started the last quarter on a bit of a high.  Susie was doing better.  She seemed to have more energy with the addition of Hydrocortisone (swimming twice a … Read More »

Quality of Life Improvement with Hydrocortisone

2 Oct

Just finished Susie’s cancer follow-up this week.  Her neuro-oncologist was greatly pleased with how she has physically improved over the summer.  She had been fighting fatigue and persistent ear infections over the last couple of years.  Her condition had deteriorated … Read More »

Wetsuit Fights Feeling Cold

8 Sep

One of the side effects that has become chronic trying to recover from cancer treatment is always feeling cold.  This condition has ebbed and flowed over the last 3+ years.  We have worked around it with Susie wearing extra clothes … Read More »

Hyponatremia and Adrenal Insufficiency

10 Jun

As many of our friends and family know, Susie has been plagued by fatigue and poor appetite. She lost around 20 lbs and could not walk more than 100 feet without needing rest. We thought maybe the condition was a side … Read More »

Final Two Month Checkup and IDH1 Clinical Trials

6 Dec

We returned to Austin from MD Anderson on Wednesday with good news, Susie’s scans are stable.  This was her last two month check-up.  She graduates now to check-ups every three months.  However, the few weeks before last week’s appointments were very nerve racking. When I … Read More »