The Story Behind “Little By Little”

Prior to July 5th 2015 our family was much like every other average suburban family and then that day our life took a turn that no one could see coming. Our backbone Kim, my wife, my three children’s mother who had never been really sick a day in her life, had been as I like to say in the hospital three times in her life to have three healthy children had a seizure that within days we would find out would be a low grade glioma. We later found out within a month it went from low grade to high grade and she was given a death sentence of glioblastoma or GBM. This is the same disease that took VP Biden’s son Beau, Senator Edward Kennedy and currently Senator John McCain and countless other men women and children. You see brain cancer doesn’t care what side of the political spectrum you’re on, if you’re black or white, the most devout religious person or a complete atheist. It kills indiscriminately and painfully slow to watch and I’d expect much worse to endure. It has statistics that are mind numbing. It is the leading killer of children worldwide and has a life expectancy measured in months not years and hasn’t changed much in three decades. It was in a corner of Perlman 9 Hospital Floor in the University of Pennsylvania hospital in September of 2015 just prior to her first awake brain surgery that would last 10 hours when Kim tried to give a $50 gift card to a young boy of 16 years old who while she was scared herself found out he was having his second GBM surgery. The hospital wouldn’t allow us to give him a gift card she had earned by getting extra MRI’s done each visit so Kim realized she needed to do more to help those less fortunate.

The phrase “little by little” comes from post her first surgery. You see Kim was always a “million miles a minute” type A personality. But then after her surgery when she struggled to speak, walk and do other daily tasks we all take for granted every day she started to say the phrase regularly. She would say “I’m going to walk around the hospital floor little by little. I’m going to pass my neurology tests Little by Little. It became so frequent that even the doctors and nurses started to call it out themselves.They wrote it on the board and it became her and eventually our mantra.

Once she passed away in late Feb 2017 I realized I needed to for my and my children’s sake help make Kim’s dream a reality so we aim to do that to help families struggling with a brain tumor or brain cancer diagnosis whether it be through funding treatments that they can’t afford, increasing awareness of the disease itself and helping increase funding so that it loses its statue as the leading killer of children worldwide. And we have faith we’ll get there Little by Little.

Kim’s Story

The morning of July 4th 2015 was a beautiful morning. We made plans to go to the Seaside Heights boardwalk with Kim’s sister Melissa and all our kids. Melissa (15 months into a stage 4 colon cancer diagnosis) was starting to have issues walking so she needed to be in a wheelchair so Kim gladly pushed her up and down the boardwalk because she was just fine not knowing tomorrow would change our lives forever. We had a great day and Missy even made it up the stairs at Spicy Cantina which we were amazed at. Had a great day, brought her home and went to bed. The next morning as usual Kim and I were running around like maniacs. Many stops along the way and by lunchtime we had grabbed Missy as we often did and Kim made her lunch at our house and got the kids and I fed and then finally sat down to eat herself. Then she got up and looked all pale. Anyone that knows Kim, knows she was always tan even in the dead of winter and I said “Hun you don’t look good why don’t you go sit down”. Well instead of taking 5 steps towards the couch and sitting down she walked all the way around the kitchen and eventually made her way there. Don’t know what prompted me because she wasn’t really symptomatic at that point but I asked her “Hun what’s my name” No answer. “Hun where do we live, what’s our address”. Nothing. Pointing to Ryan now sitting terrified on our couch I ask “What’s his name?” not a word. Kim sister sitting in her favorite chair in our house which would be later Kim’s favorite chair which has since been thrown out started freaking out. “CALL 911”. Kim was like I’ll be fine and tried to argue her way out of it. She lost that argument, the only ones she would ever lose. We called, they took her BP and it was 200/120. This is a woman who we took as the picture of health. Never taken a prescription before, only been in the hospital 3 times in her life to have three amazing kids and now I was following behind an ambulance to Community Medical center. We went there because it was a stroke center and we assumed she had a stroke. If only… Three days later, CT scans, MRI’s and batteries of tests later we were told that we could go home later that day and she was so excited. But then the doctor came in and said no you can’t go home the Neurologist (Dr. Raval) had to come see her.) Kim was devastated. Cried in her hospital bed next to me for hours. Why can’t I go home and hold my kids?? Dr. Raval came in and told us that basically something was odd in the MRI and while it could be nothing they want to do more outpatient tests to be sure. So a week or so later she had a Halter Monitor on (which she hated because it had to take video of her to ensure she’s not having seizures all weekend long) and the concrete stuck in her hair. She wasn’t allowed to drive either but she cheated and took her sister to the movies while I worked one day in August. Then the call came. When your neuro oncologist calls and asks you if you can come in tomorrow and its 3PM you get your butt out of the movie theater and go over immediately and so we did. Low grade glioma was the diagnosis. Many people live with it for years and nothing happens. We’ll have to keep an eye on it he said and do another MRI in a month. We did the MRI and it showed it went from low grade to high grade in that short of a period of time and she had what we were told were 2 tumors close to each other in the left temporal lobe. Surgery was required. We can go to either University of Pennsylvania or Sloan Kettering. Many may not know but some of my family had a falling out over stupid things and words said many years ago. Kim was so stubborn. KIM made the call to have it done at Univ of PA (with Dr Steven Brem) so that I would have support of my family and that if anything happened to her either immediately or later on we’d reconnect which we have. Even in her darkest hour she had thought of me and the kids nstead of herself. Her first words after we left Dr. Brem’s office that I will never forget and drove the 90 minutes home were “No matter what happens to me you need to make sure the kids do well in school and do amazing things even if I’m not here to see it.” So her surgery was Sept 21st 2015 and she had our surgeon in tears. He came to visit us at 8PM the two nights before the surgery and her exact words when told that the surgery could make her lose her ability to speak was “I don’t care about speaking just get these damn tumors out of my head so I can hold my kids”. Its at this point that Kaitlin took sign language classes at school for her major but also to I think just in case be able to still communicate with Mom if needed. The surgery was successful and during it a doctor came out to tell me and my dad who sat with me that Kim was yelling at them mid surgery to go out and tell my husband I’m fine. After the 10 hour surgery Dr. Brem came and sat with us and gave us the news. Glioblastoma Multiforme. Kim fought like hell to get back to herself and three short days later she was back at home and put the kids on the bus before collapsing from exhaustion on a Friday morning in Sept. The most amazing thing was her pain tolerance. The doctors and nurses would ask her from 1-10 to give medicine and it was always a 1 or 2.

So we went then for the standard treatment, radiation for 30 days, chemo for 42 and then let’s see where we’re at. It was also done because there were actually 3 tumors and one had to be left behind but they were hopeful the radiation would kill it and it did. She was pronounced a-ok after her MRI in November 2015 even though on the last day of radiation she had a seizure driving up to radiation on the highway where I literally broke several laws to get her to the hospital. She spent that Thanksgiving eve in Monmouth medical Center (and through speech issues said she wanted me to cook the children haha) She meant to cook Thanksgiving for the children and Missy. We did and she was home for it so that was good.

Christmas 2015 was tough. Missy was back and forth in the hospital and we lost her Jan 5th 2016. But her treatment continued. Temodar during radiation was easier because it was lower dose and it really hit her hard. But she struggled through and enjoyed Ryan’s soccer team’s amazing achievements watching proudly from the sideline. She got to see Ryan’s Mavs team go undefeated and win the TRBA championship by one point. Ry played but not well due to having been throwing up all weekend but it didn’t matter. Kim was there proudly holding up his fathead. March MRI was great but May’s showed a bit of a shadow that the doctors said was likely nothing but ended up being something. The July MRI showed the return of the tumor in the same spot. We immediately contacted Duke to see if we could get her into their Polio Trial. They sadly said no because it could remove her ability to speak permanently but again she wouldn’t have cared. So we went for her second surgery August 1st 2016. It was also a success but not as much of one. A day after surgery she was great but then later that day she experienced a “focal cut” a blind spot in her peripheral vision that would never return. The kids and I to keep her smiling would make faces in her area there and tell her we were doing it. We decided to do Optune treatment as well as Avastin after the 2nd surgery since the Temodar would likely not work. Avastin was OK at first then got harder to manage. Made her horribly sick. Almost as bad as the chemo that would keep her in bed for 20 hours a day. Optune was said for her because it meant we had to shave her head. I won’t ever forget the sad look on her face when we brought her to get it shaved. Optune seemed to work good as well as avastin. Blood levels were good (I kept a chart in excel of all of her weekly blood levels) and medicines were increasing. For someone who had never taken a pill before she was now on 10-15 a day. Kim got to see Kaitlin play as a starting goalie for the first time in college and nothing made her happier. We tried to get to as many games as we could but if not she was watching online screaming at the TV we had set up for her. It was October 2016 that Kim started to go downhill. She became less and less mobile and eventually in November/December she was wheelchair bound. Don’t remember exactly when it was but it was a long slow process. It was then that we decided to try cannabis oil that I had read about online in some Facebook groups I had joined. We met an amazing woman named Cathy still fighting for her husband and she guided us through the process. Christmas was tough the first one without Kim’s sister. We got Chewy for Kim for Christmas and it was an amazingly happy time. Then into January we got an MRI that was bad. It showed pseudo progression of disease. The Avastin was stopping tumors from grow but not stopping the cancer from progressing. All though this process and we didn’t realize but Kim’s swelling in her brain was immense. It caused a midline shift of up to 6 millimeters. This is when the brain shifts off its access due to pressure. This should cause immense headaches but Kim had none. Amazing her strength. So in early February 2017 Kim had her worst seizure to date. She would get them every 3-4 months (they would scare the crap out of me and the kids) but this one was different. It happened while she was sleeping. At this point and since early Jan she couldn’t make it up the stairs so we slept downstairs in the living room. Her in Missy’s chair (now become hers) and me on the couch. This seizure was intense and took 3-4 doses of Ativan for them to bring her out of it. We brought her into the hospital and an MRI showed a new tumor at a new location in the back of her brain and it was inoperable based on its location. Kim struggled for 3 more weeks, through a new chemo and eventually succumbed to glioblastoma on February 26th 2017. The day before our son Ryan who is 13 had his quarterfinal playoff basketball game. He did amazing under such adversity and scored 16 points in half a game of action including 3 three pointers in the fourth quarter to help our team win by 4. I went to the hospital first that morning, not knowing this day would be her last and didn’t want the kids to have to get up so early knowing Ryan had his semifinal game later that day. I told the kids to relax at home but something told Kaitlin to come to the hospital and bring the kids. Two days before Kim had a massive seizure that took 10 doses of Ativan and other strong medications to stop and at this point her head and body were in what I would call a constant state of seizure. Meds would control it and she got them every 2 hours but we knew time was short. So Kaitlin asked Ryan to show Mom the video of his game where his name is prominently mentioned in the crowd when he scored and at first he said no. Then about a half hour later he agreed and laid up in the bed with her. They say the last thing to go is your hearing. So Ryan played the 5 minute video and at the end he stood up, noticed a tear in Kim’s eye and wiped it away. A minute later she was gone.