early age was the most with a terminal illness originally i was going to talk to liz about all the work she's been doing with her students teaching sustainability at a local school but in hearing about the story of her son i was compelled to ask your if she would instead share about how she has helped to sustain or son's life which to me is an amazing story of a true hero i want to welcome liz cutler hello this hi jay thanks for inviting me on the show thank you for coming so can you start with giving our viewers a route of sort of a back story a little bit and telling us isaac's beginning how this all started for you that's a long story so i'll give a very short version i think for you in life yeah so when i said it was two and a half he had two older brothers ages five and a half and seven and a half throwing up with three boys one's used to lots of people throwing up and i didn't worry about it too much better come to the doctor and they said well you know it's probably stomach flu don't worry about it go home so a couple of days later he was still throwing up once a day and was uncomfortable so i went back to the doctor and the doctor said well you know it doesn't look like anything to us but if it's not better in a couple of days we'll come back so i said well a couple of days saw better tomorrow and it was christmas eve day and they said well we're just we're here on christmas eve day if it's not better by tomorrow come back so that night and the middle of the night my son had a stroke a mass stroke and we rushed him to the emergency room where they told us he had a malignant what we didn't know then was malignant but a large brain tumor and that if they didn't do immediate surgery he would die in where we spent oh six and a half weeks about four and a half those weeks were in the intensive care unit with isaac in a coma as he was in a coma right after the stroke so he was in a stroke and you had a stroke and then at chop they felt he was way too unstable to do any surgery to debug the tumor or even find out what the tumor was what it was about so they waited a week meantime he had yet another stroke in the hospital and finally a week after he arrived he was in the intensive care unit he was in total coma he they did surgery and they did what's called the poke the tumor they took out the main part but they couldn't remove it completely because it was malignant so it would have ruined his brain to actually take out all of the parts of the tumor and did a biopsy and found out that it was malignant and that they gave him nine months to live and there was no knowing if he would come out of the coma though they thought he might but they told us when he came out of the coma you'd probably be either completely aggressive or completely passive they didn't know which they didn't know if you would ever walk again or speak again or move or they had no idea what he would be like wow so it's been a long and very complicated journey when we brought him off nasty little at the end of about six or six and a half cold yeah he was amazing he was sort of of wunderkind he would crawl to the piano and pull himself up to to try to make music he loved music he he was the sweetest happiest kid he was learning to ride a bike with training wheels  he was just six three if a kid and then you know a coma is not like on television where you just wake up and say hi mom you know he he didn't say anything at all and  we couldn't get him to respond to us in fact when he was in the i c u in the coma i would crawl into the crib and read aloud to him and saying and play music and talk to him and the nursery came and said why are you are you reading children's books to me doesn't understand what you're saying you might as well read the book that you're reading so i was reading  aloud in the crib for about four weeks and your feeling was what what what was the reason for reading to him because i didn't know what he could take in or not and i knew that he has  i could tell by the monitors by looking at the numbers on the monitors that he calmed down and that his breathing became more regular and he didn't cry at all when i was there so of course i had two other kids at home so when i wasn't there i left recordings of me talking and reading books and singing so that the nurses could get him to calm so how long until he came home about six and a half weeks ok so what what condition  so we brought home a child who was essentially a vegetable he couldn't walk couldn't talk he could they let us out because he could swallow a cheerio he couldn't follow your finger with this i think he had lost everything he couldn't absence and we had night nurses because i couldn't be awake all day and all night and of course my husband thomas you know right there doing it with me and you know the first morning i brought him home  keep it normal so the first morning i put him in a stroller and i propped him up so he wouldn't fall over and i brought him down into the kitchen with me and we made pancakes and i put the ball in his lap and i put my hand on his isaac what's my name and i got to know where said sam so the boys were really involved in his rehabilitation and we've been rehabbing a member since so let's go back to he comes home and as you said he's a near vegetable he really didn't have any abilities you know everything then what kind of when you got home just curious to the doctor give you sort of advice as to how to handle any we were just sort of released you know we really didn't luckily we had the support of our friends and we knew he needed therapies of all kinds we were very fortunate to have a friend who at that time was the commissioner of health for the state of new jersey and we called him up and said you know we need a physical therapist can we don't even know where to begin to look so he said let me see if i can help you find someone which he did and that physical therapist has worked with isaac and still works with him to this day all these years later at least now she still works for them three times a week she used to come i think every day she's amazing so that was a period where you had some bricks were she would know we observed every therapy because you want to be able to mimic  because so we had to mantras what is keep it normal on the other is life is therapy so your therapy is great for an hour but really it's only going to make a difference if you absorb it into your life into your daily life so we don't know anything about how to do that so he had speech therapy and occupational therapy and physical therapy all the time constantly and either tom or i was at every single session until he was in till it the end of a great so we watched tens of thousands of hours of therapy so that we could learn how to bring it into his life into staley life that when you said before we were one of our war montreux like the use of that war montrose was keep it normal right right so like was there sort of an understanding between you and tom did this social worker come in and of course that's you know i think that's part of the rounds of the hospital and she said just want to let you know and this is the only thing that she said that was useful she said most couples about ninety eight percent break up over the kind of illness that your son has and we just looked at each other and knew that it would happen to us and we've been together a long time we've been together now about forty one years but people have been together a long time would have broken up just because they get tired of each other so that's not a reason to what was the reason that you talk about everything we deeply for everything we work together we were partners so when you came up with this war montrose that's something that know we just knew that we had just did you say let's try to keep this is normal as possible here i mean the truth is you only really have two options right you can either rock in the corner or drink or take drugs or do something to medicate yourself or you could put on your happy mask your high functioning i'm going to be productive today mask every morning and do it have to do it to other children and then at me this happened at christmas of course happened christmas and the first day of hanukkah which that era the same and then i went back to work in september part time and then we did hire someone to to be with him for part of the day so that i could go back to work and because teaching was the only thing that kind of gave me a break but tom and i we just knew each other really well we just decided that we were in for the long haul we were going to make it work and you know we're so lucky we had the resources of educate education and you know we had some financial resources and we had the resources of our friends and i don't know how people do it who don't was the most helpful thing in terms of resources and during that period you have any understanding of what was the thing that really memory rang the community that formed around us our friends for example a neighbor who moved in two days or three days before isaac got sick who i had met because i dropped off bales and for him she's for them and so we had matt and about i don't know a couple weeks after we got our hospital i find a note in my mailbox it says i'm going to do your grocery shopping every week your job is to put the grocery list in the mailbox i will drop the groceries off with the bill the next week you leave me a check in the mailbox with your grocery list so that when i  for six months while and then where i work they dropped on or off for many months three times but well i'm just interested maybe what you liked about that was that it was told you didn't have the disease no i didn't ask for help because people can say what can we look like doing and the answer is i don't know and that's a lot more work for you it's much more work for the people who just came up with something that we needed and it i mean it cannot imagine the kindness of of people who you met perfect strangers you know and the friends you listen to be say the same things over and over and over and tell the story like like the rhyme of the ancient mariner you know telling the of over and over and over i just you know i say that's amazing support when you were going through this with isaac and you were you said there were many more incidences that happened with isaac do you want to give us a sense of what some of those were and some of the conflicts or i mean how do you go share your way through the medical decisions that you had to make was why it's so complicated so you you have someone who has a brain tumor and so you have to ask well should we sure need to do something should we try to do chemotherapy or radiation and they suggested that we do brain radiation and my marvelous husband tom is a research scientist so his one of the great jobs that he did is he could do all the research and was comfortable in the world of reading scientific papers and you know we learned that his i q points would drop so deeply that he would be really a vegetable if we did brain radiation so we said no for us it's about look everybody makes a different decision for us the decision was about quality of life that's what mattered most to us we would rather have him die than live a life where he didn't know anything and where his quality of life was so compromised so that was a decision that we made everybody's different and i certainly don't judge other people but when you said that you were told the doctors are telling you right you could do radiation and it would help them right so what made you know i mean i know the research but why would you believe something that you read on the internet versus a doctor who told you i wasn't even about reading on the internet because we in the research i'm assuming y mattered what mattered most was his quality of life could he have we wanted him to have this rich a life as possible for as long as he had and so that meant not compromising his brain capabilities even more than they already were the and you know a lot of it's instinct what feels right and we had a great we had a great piece of advice from a doctor at dana farber in boston and we we took him everywhere you know we went and i agent we went to the children's hospital  down in washington and we went to dana farber and you know we talked to a lot of people into beth israel in new york and and hit the doctor jennifer said when we laid all this out and all of the possible reasons for different kinds of chemotherapy said we did try some chemotherap he said sometimes the decision you make isn't about what you think is best for isaac it's about what you can live with and so sometimes that's how we made our decisions what can we live with in the long run spinal cancer and now he has renal cell carcinoma he now has kidney cancer as well so that's a complicated backstory but in any case he has all those cancers and so there are that wonderful oncology summer camps for example that  that children who have cancer can go to and we didn't send isaac to those because we didn't want him to know he had cancer because we thought what's the point a he's not going to understand it b if he does understand that the word cancer is all about dying and it'll just make him sad were you friend you might find out well so we were afraid he might find out and we didn't want him to know but then we decided he's a kid he wants to go to camp and he made a lot of progress he could walk now and he could talk and love to laugh and he's very social and he's a real person now and he and so we finally sent him to oncology campos about let's see i think you first went to camp yeah we did it and i said so what was that like he said mom it's so sad all those kids had cancer and i said so well when it came to you when it was your turn what did you say he said i said don't worry about me i just had a stroke he said i felt so sorry for them so why would i tell him i mean it would make him so sad and it's not going to change his life to now is not going to understand  relationship like with isaac and how do they feel about him now that's a great question and it's really complicated siblings sometimes get lost in the dust in this and we try very hard for that not to happen if you interview them you might find a very different story  although i will say that we were on vacation and together as a family and isaac was upstairs with my husband and the two boys were sitting downstairs with me in the lobby of this little b and b and someone asked the boys about isaac and they had heard the story and and asked the boys will how did if it didn't affect you to have isaac and his story in your family and how did affect your life and i never asked them that question so i was interested to hear and my older son sam said i didn't say what i thought he would say but he said i learned very early that my little issues weren't the most important thing but there was always something else that was maybe more important and what i was worried about you know it's sort of a mixed bag right you know because you've sat on the other hand they're like to put isaac is terrific they adore him he adores them they are grown up now and out of the house so he sleeps in their bedroom in their beds when they're not there because he misses them so i would think the biggest issue would be about jealousy where you would think that so we worked really  sounds like there's jealousy you know jealousy they lose they spend women parents spend thousands of dollars teaching i went to a conference and grit yeah my kids and you know what they have it they don't have to learn about because from an early age they realize they were as important to someone else that's a i really think that should be something that all kids learn yeah well they learned great and they're they're pretty gritty guys and they're what's introduced they're each other's best friends because they were thrown on each other's company a lot they often had to make i'm not listening actually his right hand so i'm covering my ear i'm not listening to you of course he doesn't get that he actually can hear it with his other ear but so you know there's this may philosophies some say you know the hope is all you have and you know here is a child who was opposed to go on when he was nine months old and he's still with you do you do you feel hope is something that keeps you going or  how do you feel about hope so you asked me before how do you wend your way through the medical world some people do it through hope i don't have any hope and i've never had any hope i don't believe in hope in this situation because for me hope just set me up for failure set me up for disappointment even though he has lived such a long time but you don't know that when you're you don't know that fall down in the middle of the street there were times when he couldn't he choked himself he couldn't stop his hand from going down to three i mean there are all of these things and if you hope then when it doesn't get solved you it's such a letdown and that emotional roller coaster on top of the real emotional rollercoaster what's the real issue is what you're doing every day the fact that like for example when he was choking himself maybe eight or nine know what happened his family stopped you know so hope i mean the thing about hope is that hope hope is something you want something to happen but i have to live in the moment i don't know what's going to happen so my goal is to make every day every minute of every day i make the best decision i can i do the best thing i can every minute and you know for those first couple of years when you put on that high high functioning mask when do you wake up and you go to reach for it and it's already gone right because it's become your habit and so my habit is to do the best thing i can to make the best decision so basically you're just saying by being in the moment you really create joy for your son right i mean that's what your job is i learned that from isaac so i think used to come down stairs in the morning and in the moment he doesn't because of all the brain damage he really doesn't have the capability of anticipating and he he can motor plant he's he's pretty much right there in the moment so it is like some time to know you know you know people ask me well what was it like for you at the beginning and it was like taking a pane of glass and dropping it from twenty stories my life has been looking for all those little pieces of glass and trying to put them back together into a window that still functions right so you go through all of the stages of grief grief anger fury frustration grief sadness pain at everything why me you know what am i doing here in the pic you in the pediatric intensive care unit you know half of the kids who were there were there for child abuse was i doing there no i was the opposite of that you're furious at a friend of mine whose child had a stroke ten years before said to us said to me liz you have to stop an expletive i want to say on it but she was right she was right it's all about focusing on what's there and what well what's lost you are i have to say we have to close well thanks for  been sort of drawn to tears but i have so much respect for you've been doing things and i really congratulations on mother's day thank you there's no other show prof ways thanks for joining us we'll see