In September 22, 2004, our lives changed forever. My husband, Jerry, was diagnosed with a brain tumor.  The day-to-day struggles over the last five years are impossible to put into perspective but I'll do my best. Jerry was a very active, healthy 35 year old.  He was always multi-tasking, fixing things around the house, helping others at work, playing with our son Peter, etc.  On that day three years ago, Jerry collapsed into a grand mal seizure on the floor of our garage.  He suffered through more seizures on his way to and in the ER while at Portsmouth Regional Hospital.  Jerry had no brain tumor symptoms, i.e. headaches, dizziness, etc. I was on bed rest at the time with a high risk pregnancy, carrying twins that were due in March, 2005.  I had lost two pregnancies prior to the birth of our son, Peter, who was only 11 months old at the time. Jerry was transported to Massachusetts General Hospital in Boston, MA where we discussed his case in great detail with an entire team of specialists, which included the top neurosurgeon and neuro-oncologists. Jerry didn’t need a biopsy to determine the course of action.  A craniotomy was needed.  Jerry had brain surgery on October 4, 2004.  The surgery went well but Jerry needed a lot of rehabilitation.  The location of his tumor affected the entire left side of his body.  He had to learn how to walk again.  Jerry spent a few more weeks in Boston at Youville Rehabilitation Hospital. A few weeks after Jerry’s surgery we learned from the pathology report that Jerry’s tumor (oglioastrosytoma grade II) had a high risk of recurrence at a potentially higher grade.  His treatment plan included chemotherapy and radiation. Jerry’s initial recovery was long (a few months) but he was very determined to get his life back.  Although Jerry was unable to drive, he returned to work full-time in January 2005 and continued with his monthly chemotherapy treatments. On February 4, 2005 we had another turn of events.  I was sent by ambulance to MGH and delivered our twins, Jake and Megan.  They arrived 2 months premature and weighed only 4 lbs. each.  Jake and Megan were in the NICU for several weeks.  We have no family in-state.  My parents live in Virginia and Jerry’s parents live in Texas. Our family flew in to take care of Peter in NH.  Two days after giving birth I was discharged but had no place to go.  MGH didn’t have a room for us in the NICU.  Jerry and I spent a few nights in a public waiting room on cots several floors above the NICU with little to no sleep. Two weeks after giving birth to Jake and Megan I was diagnosis with Placenta Accreta.  Unfortunately,  I had complications and was rushed to the ER to undergo an emergency hysterectomy and blood transfusion.  Finally, after my recovery at the end of February, Jake, Megan and I were able to come home. Peter was only 15 months old when Jake and Megan were born, so life right there was a bit complicated.  Jerry continued with his chemotherapy treatments, traveling down to MGH monthly and although it was taking a toll on his body, Jerry pushed through. Life seemed to be getting better when we reached the 1 year mark of Jerry’s diagnosis.  Peter would be turning two and Jake and Megan were out of the woods and in good health approaching their 1st birthdays.  But in October 2005, Jerry began to get headaches.  An MRI reported a “spot”.  Jerry went into MGH for a biopsy.  The results were positive, no tumor.  However it was scar tissue from the radiation, officially called “Radiation Necrosis”.  Jerry was put on steroids in the hope of shrinking the necrosis.  Jerry continued monthly chemo. In February 2006, Jerry was chronically fatigued and the doctors decided to take a break from chemo to give his body a rest.  Jerry had completed 15 months of chemotherapy.  At the same time, Jerry decided to take a break from work, which was not easy for him to do. After six months on steroids there was no improvement in the scar tissue in Jerry’s brain.  In fact, it had become larger.  Jerry began to show signs of cognitive impairment, i.e. forgetting things, losing his balance, weakness on his left side, flat affect, etc. Jerry was hospitalized over a dozen times throughout 2006 for these impairments and clearly was declining. In April 2006, Jerry started hyperbaric oxygen treatments.  These daily treatments were a bit risky but the only other option.  Because Jerry’s scar tissue was inoperable, I arranged consultations with several other hospitals which included Wentworth Douglas, Dana Farber, Lahey Clinic and MD Anderson in Houston, TX in order to explore other medical options.  That was no easy task while caring for three babies.  All of the doctors concurred with MGH’s diagnosis and treatment.  The radiation Jerry had back in Nov. ’04 had caused scar tissue which ultimately caused his brain damage or traumatic brain injury. With assistance from the Brain Tumor Society, we were able to consult with a physician in New Orleans who specialized in hyperbaric oxygen therapy, specifically for traumatic brain injury patients.  Jerry spent September and October 2006 in New Orleans undergoing daily treatments.  We saw a little bit of improvement yet didn’t get the results we were hoping for.  The daily HBO treatments took a lot out of Jerry and the steroids were taking a toll on his body.  Jerry was away from home for over 2 months and missed Peter’s 2nd birthday. I continued to care for Jerry and the children, driving Jerry to multiple appointments a day, while managing our finances, medical bills, insurance issues and disability applications.  I was in the hospital for a series of tests for my own health.  Clearly my role of full-time caregiver, mother of 3 toddlers and managing a house was taking a toll on me.  It was obvious I needed more help. In the summer of 2006, my college roommate from Providence College organized a fundraiser to help us pay for an au pair to come and live with us to help me with the three children.  It took a few months to find the right person but we went through an agency and matched with a young girl from South Africa.  She arrived in early 2007. Jerry's health has further declined.  On November 12 at 4:00 am I was awakened by Jerry having a seizure in bed.  Jerry suffered through 5  grand mal seizures and lost consciousness.  After he was stabilized at Portsmouth Regional Hospital, Jerry was transferred to MGH.  Jerry was in the ICU for a few days, and then transferred to a neurology floor.  He later spent a couple of weeks at Spaulding Rehabilitation Hospital in Boston.  Jerry and our family spent Thanksgiving in the hospital that year. Jerry arrived home mid-December, right in time for the 2006 holidays.  It was great to be a family again and try to enjoy the holidays.  He spent the first few weeks of the new year attending outpatient rehabilitation. = In late January, 2007 our au pair, Michelle Jacobs, arrived from South Africa.  It was her first time on an airplane and the first time out of her own country.  It took a few months of transitioning and training for everyone, but we have had a wonderful time getting to know Michelle.  She also chose our family over other host families as she knew our family needed the most help.  Michelle is here for all the right reasons and we could not survive without her.  She truly has become part of our family. Unfortunately in early February 2007, Jerry was hospitalized again for more seizures.  The medication that was helping to keep him alive was also deteriorating his body.  He was back at MGH.  Each time Jerry has a seizure, it dramatically weakens his body.  Jerry was in the hospital on February 4th and missed Jake and Megan’s 2nd birthday. Jerry returned to the Neuro Day Rehabilitation Program at Portsmouth Regional Hospital in March, 2007.  At the same time Jerry and I were introduced to Stepping Stones, which is a day program for individuals living with a brain injury.  Both groups have become invaluable to us.  Jerry and I regularly attend support groups and have made a number friends who also struggle with a brain injury. In June 2007, Jerry was back in the hospital after suffering yet another seizure.  Unfortunately just one seizure can really set Jerry back.  He spent almost 3 weeks at Spaulding Rehabilitation Hospital trying to regain mobility of his left side.  Jerry was hospitalized for the 4th of July, one of his favorite family holidays.  He finally came home mid July. In July 2007, Jerry had surgery for an implanted port which was placed in his chest for future IV therapy treatments. His physical and cognitive challenges have progressed to a point where it was necessary to engage full time care in a wonderful local facility.  He struggles with significant weakness on his left side and the most basic tasks such as dressing, grooming, feeding and any degree of mobility.   He still relies heavily upon his children and me for emotional support, but as time moves on, our ability to reach him on deeply emotional levels becomes increasingly difficult. Over these past five years, we have received tremendous outreach and support from family, friends, neighbors, former co-workers of Jerry’s at The Timberland Company, former co-workers of mine from Phillips Exeter Academy and even people we don’t know. Although Jerry’s body and mind have been compromised, his soul keeps him alive today.  Not a day goes by that I don’t hear him say “it could be worse”.  I pray that our three children will have the chance to know a healthy father, or even better, to know the Jerry that I once knew. Allison Haley

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