Ben's StoryBen was an energetic, positive, mature, kind, courageous and empathetic teenager. Despite having had cancer at age three and two relapses and cancer at age sixteen, he always smiled. Whenever his friends were down, he would go out of his way to help them. His spirit was one of courage, perseverance, kindness and love.
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LEUKEMIA (2002-2008)
Diagnosis
Ben was born on May 20th, 1999. He was a beautiful. healthy, energetic boy. Ben was first diagnosed with leukemia (ALL- acute lymphoblastic leukemia) on October 23, 2002 at the age of 3 and a half. It began with a cold and fever. After some Tylenol, the fever was gone but returned a few days later. So we went to Eagle Ridge Hospital just to check if there was another infection present. Blood was taken to determine the problem and we were given antibiotics to help with the fever. We returned home around 9pm. At 11:00pm that same night, the hospital phoned back to tell us to go to Children’s Hospital right away, without telling us why. We woke Ben up and went straight there. They took blood, with Ben crying and not wanting another needle. The doctor came back about an hour later saying since there was an elevated white blood count, it could be leukemia. We were shocked, to say the least. Ben was admitted to the hospital and so began his first 3 years of chemo.
Treatment
Ben had intense chemo to bring his blood counts back to normal and get him into remission. He then had 3 years of chemo to keep him in remission. He spent many weeks in the hospital with infection after infection. He felt sick over and over and was very tired. During that time, he was able to attend kindergarten and grade one on and off. After the 3 years of chemo, Ben, now 6, was “healed”.
Relapse #1 + more intense chemo & radiation
From January to early August 2006, he was on maintenance drugs to keep him healthy. Checking blood counts every week or so, we noticed his platelets were getting low. Another bone marrow was done to check everything and our fears were confirmed. He had relapsed. Now what!? Our best option was to do even more intense chemo for another 2 years. Ben was subjected to heavy duty chemo drugs and treatments for the next 2 years while attending school from time to time. He always kept a positive attitude as much as he could.
PGD
After about a year, we were wondering what we could do in case the 2 more years of chemo didn’t work. At this point, we were starting to lose hope. The only real option left was a bone marrow transplant. The doctors checked the world wide registry but no bone marrow match was available. We heard of couples being able to do in vitro to conceive a child where the fertilized embryos are tested for a match (Preimplantation Genetic Diagnosis -PGD). If there is one that is a match for the sick child, it would be implanted in the uterus and when the child is born, the stem cells from the umbilical cord would be taken and used for a stem cell transplant to cure the sick child. We checked some clinics in
Vancouver but none encouraged us because of Pam’s age.
We were angry and disappointed with Children’s Hospital for not telling us about this possibility to save our child. There were ethical issues, they claimed, and their position was not clear. After going to the newspapers and Canada AM to make the issue public for other families that may be facing this situation, we pushed on to look for a clinic to help us out. One in Chicago did want to help. We had to raise lots of money for the procedure. We were about to go to Chicago when we received news from Children’s Hospital.
Relapse # 2
In May 2007, Ben’s routine checks showed the blood counts weren’t quite right. Another bone marrow biopsy concluded he had relapsed again, this time while on chemo. This meant chemotherapy was not
effective in getting rid of the leukemia. We were also too late in proceeding with our PGD to conceive another child. We were at a lose again.
Unrelated double cord stem cell transplant
Since there was no match for a bone marrow transplant, our final option was to do a non-related partially matched one. Another, newer method, involves collecting stem cells from the blood of discarded umbilical cords and use it as an unrelated umbilical cord stem cell transplant. This was still “new” in helping cure cancers. At this point, many governments do not collect or keep umbilical cords when a child is born. They are usually discarded. Some private companies do collect cords. Now, however, the benefits of stem cells is being recognized and more hospitals suggest parents to keep them for their own child or for others needing the stem cells. In our case, two closely matched cords were found containing 4 out of 6 markers. One came from Europe and another from the United States.
Isolation and waiting
Once again, we had to get Ben’s bone marrow eradicated. He, once again, had to have super intense chemo for 2 months to get him into remission. This time he also had to endure 8 sessions of whole body
radiation. On August 5th, 2008 Ben received his transplant (the two umbilical cord stem cells). Ben now had 3 blood types in his system, all fighting to graft in his bones and become his new bone marrow. Many infections were a serious possibility. We even had the infectious disease doctors come in and say that he will not make it due to an infection that he had. Ben was only allowed to eat plain noodles, water and crackers. Ben had Graft-vs-host (GVH) disease where the body rejects the new blood and stem cells. He had fevers and infections. Some of the drugs caused hair to grow everywhere and increased his hunger and weight. Ben was in an isolation room that he was not allowed to leave for 5 months. After those 5 months, the stem cells had engrafted and was producing blood.
Success!
The transplant was a success. Many complications can follow a patient of a transplant for years after the transplant. There is a possibility of the cancer returning, and of GVH (Graft vs Host) and other complications. Ben tended to walk on his toes as the years of chemo had tightened his Achilles tendon causing it to hurt for him to put his heal down. He possibly needed an operation to extend the tendon. Seven years had gone by since the transplant. Ben had been going to school and playing soccer on a team. We continued to check his blood and how he was feeling every 3 months. After the first 2 years, we needed to only check his bloodwork once a year. We hoped he would continue to be well in the future.
Ben was born on May 20th, 1999. He was a beautiful. healthy, energetic boy. Ben was first diagnosed with leukemia (ALL- acute lymphoblastic leukemia) on October 23, 2002 at the age of 3 and a half. It began with a cold and fever. After some Tylenol, the fever was gone but returned a few days later. So we went to Eagle Ridge Hospital just to check if there was another infection present. Blood was taken to determine the problem and we were given antibiotics to help with the fever. We returned home around 9pm. At 11:00pm that same night, the hospital phoned back to tell us to go to Children’s Hospital right away, without telling us why. We woke Ben up and went straight there. They took blood, with Ben crying and not wanting another needle. The doctor came back about an hour later saying since there was an elevated white blood count, it could be leukemia. We were shocked, to say the least. Ben was admitted to the hospital and so began his first 3 years of chemo.
Treatment
Ben had intense chemo to bring his blood counts back to normal and get him into remission. He then had 3 years of chemo to keep him in remission. He spent many weeks in the hospital with infection after infection. He felt sick over and over and was very tired. During that time, he was able to attend kindergarten and grade one on and off. After the 3 years of chemo, Ben, now 6, was “healed”.
Relapse #1 + more intense chemo & radiation
From January to early August 2006, he was on maintenance drugs to keep him healthy. Checking blood counts every week or so, we noticed his platelets were getting low. Another bone marrow was done to check everything and our fears were confirmed. He had relapsed. Now what!? Our best option was to do even more intense chemo for another 2 years. Ben was subjected to heavy duty chemo drugs and treatments for the next 2 years while attending school from time to time. He always kept a positive attitude as much as he could.
PGD
After about a year, we were wondering what we could do in case the 2 more years of chemo didn’t work. At this point, we were starting to lose hope. The only real option left was a bone marrow transplant. The doctors checked the world wide registry but no bone marrow match was available. We heard of couples being able to do in vitro to conceive a child where the fertilized embryos are tested for a match (Preimplantation Genetic Diagnosis -PGD). If there is one that is a match for the sick child, it would be implanted in the uterus and when the child is born, the stem cells from the umbilical cord would be taken and used for a stem cell transplant to cure the sick child. We checked some clinics in
Vancouver but none encouraged us because of Pam’s age.
We were angry and disappointed with Children’s Hospital for not telling us about this possibility to save our child. There were ethical issues, they claimed, and their position was not clear. After going to the newspapers and Canada AM to make the issue public for other families that may be facing this situation, we pushed on to look for a clinic to help us out. One in Chicago did want to help. We had to raise lots of money for the procedure. We were about to go to Chicago when we received news from Children’s Hospital.
Relapse # 2
In May 2007, Ben’s routine checks showed the blood counts weren’t quite right. Another bone marrow biopsy concluded he had relapsed again, this time while on chemo. This meant chemotherapy was not
effective in getting rid of the leukemia. We were also too late in proceeding with our PGD to conceive another child. We were at a lose again.
Unrelated double cord stem cell transplant
Since there was no match for a bone marrow transplant, our final option was to do a non-related partially matched one. Another, newer method, involves collecting stem cells from the blood of discarded umbilical cords and use it as an unrelated umbilical cord stem cell transplant. This was still “new” in helping cure cancers. At this point, many governments do not collect or keep umbilical cords when a child is born. They are usually discarded. Some private companies do collect cords. Now, however, the benefits of stem cells is being recognized and more hospitals suggest parents to keep them for their own child or for others needing the stem cells. In our case, two closely matched cords were found containing 4 out of 6 markers. One came from Europe and another from the United States.
Isolation and waiting
Once again, we had to get Ben’s bone marrow eradicated. He, once again, had to have super intense chemo for 2 months to get him into remission. This time he also had to endure 8 sessions of whole body
radiation. On August 5th, 2008 Ben received his transplant (the two umbilical cord stem cells). Ben now had 3 blood types in his system, all fighting to graft in his bones and become his new bone marrow. Many infections were a serious possibility. We even had the infectious disease doctors come in and say that he will not make it due to an infection that he had. Ben was only allowed to eat plain noodles, water and crackers. Ben had Graft-vs-host (GVH) disease where the body rejects the new blood and stem cells. He had fevers and infections. Some of the drugs caused hair to grow everywhere and increased his hunger and weight. Ben was in an isolation room that he was not allowed to leave for 5 months. After those 5 months, the stem cells had engrafted and was producing blood.
Success!
The transplant was a success. Many complications can follow a patient of a transplant for years after the transplant. There is a possibility of the cancer returning, and of GVH (Graft vs Host) and other complications. Ben tended to walk on his toes as the years of chemo had tightened his Achilles tendon causing it to hurt for him to put his heal down. He possibly needed an operation to extend the tendon. Seven years had gone by since the transplant. Ben had been going to school and playing soccer on a team. We continued to check his blood and how he was feeling every 3 months. After the first 2 years, we needed to only check his bloodwork once a year. We hoped he would continue to be well in the future.
CANCER-FREE (2008-2015)
Life slowly returned to normal
After the stem cell transplant in 2008, Ben had been doing great! He had been going to school, playing soccer, traveling, ... what every boy would normally do. It took us a very long time to slow down our worrying about how he was doing. Every year when we went to do blood work at the hospital, it would bring back all the worry and anxiety that we had while in the hospital during all those previous years of treatment.
Ben went through middle school (grades 6, 7 and 8) doing many activities. He was in band, playing the trumpet.
He loved to write scripts, act and put together movies with his friends both for assignments and for fun. In 2012-13, he was in grade 8. I was lucky enough to transfer to his school and teach grade 8 that year. I taught everything except Math and Science to the grade 8 French Immersion students. So I had Ben in my class for French, Socials and P.E. It was great to see him everyday and to see how different our kids are in a school environment. He is funny, creative, popular and smart! I would make jokes about him in class, much to his embarrassment, I'm sure. He would do the same back at me once in a while.
Ben made a speech in grade 8 in front of the entire school, about his experience with cancer, for the Terry Fox Run. It was an amazing speech with jokes thrown in there to lighten things up. He wrote it entirely himself. I was in tears. The whole audience was very silent but exploded with applause when he was done. I was so proud!
Ben started high school the following year. He did many activities and continued band but added jazz band. He came is second place for a spoken word poetry contest. He was on the honour roll with straight A's through grade 9 and 10 with 86 to 97 percentile in all his subjects. He worked hard on all his assignments. He had lots of friends and every year, during the last week of June, he would throw a year-end party at our house. He would organize these parties right down to the minute. This included games, music, when to serve food, when to go swimming, and when to turn on which lights for the dance portion of the party. He had DJ lights, mixes, smoke machines ... the whole setup for a great party. When he turned 16 years of age, he wanted a party bus to take him and his friends to a park where they could play games and relax for 2 hours and then return to the party. Quite fun actually! The photo above was taken from that party (2015).
So the summer of 2015, we were going to relax and maybe go to Vegas for a quick getaway. Maybe do a little camping in Oregon and biking trips etc. Then it would be grade 11 in the Fall.
After the stem cell transplant in 2008, Ben had been doing great! He had been going to school, playing soccer, traveling, ... what every boy would normally do. It took us a very long time to slow down our worrying about how he was doing. Every year when we went to do blood work at the hospital, it would bring back all the worry and anxiety that we had while in the hospital during all those previous years of treatment.
Ben went through middle school (grades 6, 7 and 8) doing many activities. He was in band, playing the trumpet.
He loved to write scripts, act and put together movies with his friends both for assignments and for fun. In 2012-13, he was in grade 8. I was lucky enough to transfer to his school and teach grade 8 that year. I taught everything except Math and Science to the grade 8 French Immersion students. So I had Ben in my class for French, Socials and P.E. It was great to see him everyday and to see how different our kids are in a school environment. He is funny, creative, popular and smart! I would make jokes about him in class, much to his embarrassment, I'm sure. He would do the same back at me once in a while.
Ben made a speech in grade 8 in front of the entire school, about his experience with cancer, for the Terry Fox Run. It was an amazing speech with jokes thrown in there to lighten things up. He wrote it entirely himself. I was in tears. The whole audience was very silent but exploded with applause when he was done. I was so proud!
Ben started high school the following year. He did many activities and continued band but added jazz band. He came is second place for a spoken word poetry contest. He was on the honour roll with straight A's through grade 9 and 10 with 86 to 97 percentile in all his subjects. He worked hard on all his assignments. He had lots of friends and every year, during the last week of June, he would throw a year-end party at our house. He would organize these parties right down to the minute. This included games, music, when to serve food, when to go swimming, and when to turn on which lights for the dance portion of the party. He had DJ lights, mixes, smoke machines ... the whole setup for a great party. When he turned 16 years of age, he wanted a party bus to take him and his friends to a park where they could play games and relax for 2 hours and then return to the party. Quite fun actually! The photo above was taken from that party (2015).
So the summer of 2015, we were going to relax and maybe go to Vegas for a quick getaway. Maybe do a little camping in Oregon and biking trips etc. Then it would be grade 11 in the Fall.
BRAIN TUMOUR (2015-2016)
Signs
Around June 17th, 2015, Ben received a hit to the head from a badminton racket. His head hurt for a while but seemed to go away. He then had to write 2 exams the following 2 days. He complained about his head hurting on the left side and some confusion. We took him to our family doctor and he suggested rest for a concussion. So he rested for a couple of weeks. Ben slept much of the day with very little energy. When he got up his head hurt more. Then he seemed to forget things and couldn't find his words, so we took him to emergency at the local hospital. They suggested the same with rest and Tylenol. A week later we went back to our doctor, seeing no improvement, and were told, yet again, to give a few more days with Tylenol and then return to see him after the weekend. That Saturday, Ben got up after resting on the couch but when he smiled only the left side of his face smiled. His face returned to normal after about 30 secs. We immediately thought maybe a mild stroke? Now we were worried. We took him to emergency at our local hospital, again. There doctors looked him over and asked about his history. We told them everything. They debated about doing a CT Scan as they didn't want to expose him to more radiation and they didn't really think it necessary, especially after consulting with the oncologist on call. So, again, home with Tylenol etc. Meanwhile, we emailed Ben's oncologist, who cured him of leukemia. She responded saying it was "concerning" and that she would like to see us on that Monday (July 20th). Meanwhile, I looked up symptoms for concussions and brain tumour. They were almost identical except a few differences. That got me worried.
Around June 17th, 2015, Ben received a hit to the head from a badminton racket. His head hurt for a while but seemed to go away. He then had to write 2 exams the following 2 days. He complained about his head hurting on the left side and some confusion. We took him to our family doctor and he suggested rest for a concussion. So he rested for a couple of weeks. Ben slept much of the day with very little energy. When he got up his head hurt more. Then he seemed to forget things and couldn't find his words, so we took him to emergency at the local hospital. They suggested the same with rest and Tylenol. A week later we went back to our doctor, seeing no improvement, and were told, yet again, to give a few more days with Tylenol and then return to see him after the weekend. That Saturday, Ben got up after resting on the couch but when he smiled only the left side of his face smiled. His face returned to normal after about 30 secs. We immediately thought maybe a mild stroke? Now we were worried. We took him to emergency at our local hospital, again. There doctors looked him over and asked about his history. We told them everything. They debated about doing a CT Scan as they didn't want to expose him to more radiation and they didn't really think it necessary, especially after consulting with the oncologist on call. So, again, home with Tylenol etc. Meanwhile, we emailed Ben's oncologist, who cured him of leukemia. She responded saying it was "concerning" and that she would like to see us on that Monday (July 20th). Meanwhile, I looked up symptoms for concussions and brain tumour. They were almost identical except a few differences. That got me worried.
Diagnosis
We came into Children's Hospital that Monday. He had blood work done, which was perfectly fine. She suggested we do a CT Scan and she got us in right away. We waited for results. Then Ben's oncologist came in with two other nurses and told us the news. Ben had a 5cm brain tumour on the left side of his head. Of course, we were devastated! We thought all this was just a concussion with maybe some bleeding involved. We had absolutely no clue it could be this especially since all the blood work always came back perfect. So right away he was admitted, they did a MRI to get a better picture. We were then told that he has to be operated on the following morning. I stayed over night with him.
Brain surgery
The following morning at 7am, nurses, doctors, specialists, brain surgeons, fellows, and anaesthetists came in and out of the room. He was prepped and I went with him into the operating room. Scary place! I saw in the back the MRI of Ben's head showing the massive tumour. It was way bigger than I thought it was. Almost the size of a tennis ball. Ben was quite strong and didn't seem nervous at all. I guess with everything he's been through since 2002, he's able to take this all in. I held his hand while the anaesthetist injected the the medicine to make him sleep. It was difficult to be strong at that point.
We came into Children's Hospital that Monday. He had blood work done, which was perfectly fine. She suggested we do a CT Scan and she got us in right away. We waited for results. Then Ben's oncologist came in with two other nurses and told us the news. Ben had a 5cm brain tumour on the left side of his head. Of course, we were devastated! We thought all this was just a concussion with maybe some bleeding involved. We had absolutely no clue it could be this especially since all the blood work always came back perfect. So right away he was admitted, they did a MRI to get a better picture. We were then told that he has to be operated on the following morning. I stayed over night with him.
Brain surgery
The following morning at 7am, nurses, doctors, specialists, brain surgeons, fellows, and anaesthetists came in and out of the room. He was prepped and I went with him into the operating room. Scary place! I saw in the back the MRI of Ben's head showing the massive tumour. It was way bigger than I thought it was. Almost the size of a tennis ball. Ben was quite strong and didn't seem nervous at all. I guess with everything he's been through since 2002, he's able to take this all in. I held his hand while the anaesthetist injected the the medicine to make him sleep. It was difficult to be strong at that point.
The operation began around 9:30 after Ben's stabilization from the anaesthetic. We waited in a small room for any news of how he was doing. We would get a call or two from the anaesthetist to tell us where they were at. Once he mentioned they had removed a third of the tumour. After 3.5 hours on the operation table, they started closing up. The surgeon, a very renowned doctor (Dr. Steinbok), came in to tell us how it went. It went perfectly and as expected. Most, if not all of the tumour was removed. Ben did very well and was in intensive care for recovery. Obstacle 1 - complete.
We were allowed to see Ben a couple of hours after his surgery. He seemed surprisingly quite fine, especially having gone through brain surgery. He still had all of his hair left except where they made the incision. He seemed in good spirits!
We were allowed to see Ben a couple of hours after his surgery. He seemed surprisingly quite fine, especially having gone through brain surgery. He still had all of his hair left except where they made the incision. He seemed in good spirits!
The swelling on the left side of his face started a few hours later. It swelled considerably but didn't hurt. Just uncomfortable. The next day he had a black eye on the left side. All this is normal. Intensive care was not too much fun at all. He was to be woken up every hour the first night to check how he was doing. Then he was woken up every 2 hours. We were anxious to go up to floor 3R where he could have his own room and sleep for longer periods. There were a few other patients in intensive care that were quite loud especially during the night, so that didn't help the resting. The following day, around 1pm, he was allowed to go up to 3R and his own room. There, he stayed to recover for about 4 days. Everything went according to protocol. He caught up on his sleep. He had headaches here and there as the swelling went down and things moved back into place in his head. We shampooed his hair once which felt "strange" Ben said. He was released to go home that Friday. It was one crazy, stressful week! And we had just come in for a consultation that Monday morning!
Treatment
Next on the protocol for Ben was to take chemo at home. Many pills everyday. He was also to have 33 sessions of radiation to his head to get rid of any left over tumours and to prevent others from growing. We went almost daily to the BC cancer Agency for his radiation. He usually felt fine after the sessions. After a while there was some "burning" on the left side of his face from the radiation and his hair fell out on the back and the right side of his head. That didn't bother Ben too much/ Thats what hats are for.
Chemo continued at home. A few sick days but mostly just being tired. He attended school, which is all he really wanted to do. He wanted his friends around and have as normal a life as possible.
MRI's + trying to make the best of it
MRI's showed large white areas which was thought to be radiation necrosis for the longest time. PET scans did not show activity related to tumours. That was a happy time for Ben and all of us!
Treatment
Next on the protocol for Ben was to take chemo at home. Many pills everyday. He was also to have 33 sessions of radiation to his head to get rid of any left over tumours and to prevent others from growing. We went almost daily to the BC cancer Agency for his radiation. He usually felt fine after the sessions. After a while there was some "burning" on the left side of his face from the radiation and his hair fell out on the back and the right side of his head. That didn't bother Ben too much/ Thats what hats are for.
Chemo continued at home. A few sick days but mostly just being tired. He attended school, which is all he really wanted to do. He wanted his friends around and have as normal a life as possible.
MRI's + trying to make the best of it
MRI's showed large white areas which was thought to be radiation necrosis for the longest time. PET scans did not show activity related to tumours. That was a happy time for Ben and all of us!
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Unfortunately it was short-lived as after a while, it was found that all that white area, on the MRI, was actually tumour.
He was on Dexamethasone to keep the swelling down but it was out of the doctors' hands at that point. |
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Children's Wish Foundation granted Ben a wish. He chose to go to San Diego to attend the Comic Con there at the end of July 2016. He was very excited. However, with the recent events, it was decided that he needed to change his wish to something in the very near future. He decided to go to Hawaii. We all had never been there and, since he loved marine biology and anything to do with the ocean, he thought this would be a great trip. Everything was organized. The day before we left (May 28th), Ben had some type of "seizure", where the tumour had acted on his brain causing him to be very sleepy with a headache. He could not get up and his right side was numb and unresponsive. After almost 24 hours like this, we had to cancel his wish to go to Hawaii.
Things are getting worse + Canuck Place Hospice
Ben went to Children's Hospital to see what was going on. There was progression, meaning the tumour was spreading. It was decided that he needed to go to Canuck Place Children's Hospice. The first week there, he was able to get up, talk, eat and watch TV. So on Father's Day, we decided to take Ben home, after having a bed placed there by the Red Cross (since going up stairs was not possible). He was so glad to be home. We stayed at home for four days. On the fourth day, Ben was more and more sleepy and hardly ate anything. So we decided to return to Canuck Place.
The end ...
At Canuck Place, Ben didn't eat and spent much of his time sleeping but able to answer simple questions with one or two word answers for the first week. He was on Dex still to keep the swelling of the tumour down as much as possible. He continued like this with no food or water for 16 days! Ben passed away at 10:58am Friday, July 8th, 2016.
Ben was kind, positive, happy, and a courageous fighter. He never once gave up hope or made a negative comment about his condition. He is our inspiration. He would say "I love you" over 20 times each day!
Ben wrote an amazing science fiction novel called 3 Realms from age 12 to 16. It is now published and available. Please click on the 3 Realms link above to read about it and where you can get your copy.
Living with the loss
We are trying to cope with the loss of our dear Ben. Losing a child is so difficult and life-changing. It is not the normal progression of things. Each of us in the family is dealing with it at our own pace and we're not at the same place. The house is silent, lifeless and it's rare that joy happens anymore. Sunny days are not as happy, rainy days are more depressing. It's difficult to believe that life will eventually return to "normal" after the loss of a child.
You can read more current details about Ben on Ben's Blog.
Things are getting worse + Canuck Place Hospice
Ben went to Children's Hospital to see what was going on. There was progression, meaning the tumour was spreading. It was decided that he needed to go to Canuck Place Children's Hospice. The first week there, he was able to get up, talk, eat and watch TV. So on Father's Day, we decided to take Ben home, after having a bed placed there by the Red Cross (since going up stairs was not possible). He was so glad to be home. We stayed at home for four days. On the fourth day, Ben was more and more sleepy and hardly ate anything. So we decided to return to Canuck Place.
The end ...
At Canuck Place, Ben didn't eat and spent much of his time sleeping but able to answer simple questions with one or two word answers for the first week. He was on Dex still to keep the swelling of the tumour down as much as possible. He continued like this with no food or water for 16 days! Ben passed away at 10:58am Friday, July 8th, 2016.
Ben was kind, positive, happy, and a courageous fighter. He never once gave up hope or made a negative comment about his condition. He is our inspiration. He would say "I love you" over 20 times each day!
Ben wrote an amazing science fiction novel called 3 Realms from age 12 to 16. It is now published and available. Please click on the 3 Realms link above to read about it and where you can get your copy.
Living with the loss
We are trying to cope with the loss of our dear Ben. Losing a child is so difficult and life-changing. It is not the normal progression of things. Each of us in the family is dealing with it at our own pace and we're not at the same place. The house is silent, lifeless and it's rare that joy happens anymore. Sunny days are not as happy, rainy days are more depressing. It's difficult to believe that life will eventually return to "normal" after the loss of a child.
You can read more current details about Ben on Ben's Blog.