Reflecting back to a lesson-learned, jump and the net will be there. When it was determined that Boston was the best place to treat Madison's rarest of the rare disease, I'd be lying if I didn't say it was financially daunting. Just that first trip was five round-trip tickets, and 9 weeks lodging. The five travelers, myself, Step-mum Angela, mother hen Colleen, Madison, and her BF Rodger. Angela and I rented a 2BR apartment and got a great rate since it was specific for handicapped people, which sucked for us being tall. Since everything was for wheelchair accessible people, no overhead cabinets for water glasses and everything down low, which we are not. We had that for six weeks I could work remotely from Boston. Mama Colleen could only take three weeks from work that stint, so she came staying in a different apartment. The reason Angela and I and rented a 2BR was a separate place for me to work, and while Colleen and I talked about sharing that apartment, it might have ended up like a Columbo mystery of the week. Most importantly, a bedroom for Madison that we thought after time, she wouldn't want to use. Here's why.
We were very lucky and blessed on so many levels. After being on a wait-list, the Hope Lodge called saying they had a room available for the whole six weeks. Madison wasn't at all keen on it but the cost was zero. When my friend Jan finally convinced me that I was a stubborn ass for not asking for help because people frantically wanted to, I thought this may work. So the plan: Angela and I get an apartment across the street from the Hospital, Colleen another apartment, and I felt what would be best for Madison was to give the Hope Lodge an honest try. I stayed overnight with her in the tiny suite (one of 40) for the first few nights. Rodger flew in and Madison was a little more amiable to trying it some more. The easiest thing would have been to simply have Madi and Rodger have the second bedroom in our apartment. Radiation treatments only lasted 15 minutes per day, so the rest of the time would be staying with Angela and me? The Hope Lodge was the first experience I had that opened my eyes to how truly good people can be, I'd touched on that here. Angela volunteered there, pictured in that link. Madison summed it up nicely once she'd settled in to the Hope Lodge. We were at a fundraiser for the Hope Lodge and someone asked her what made it special. Madison said everyone there had traveled to Boston for cancer treatment, but people want to get to know each other.. cancer mostly not talked about was is just something they all had in common.
Every week day, Madison and Rodger would take the 30 minute shuttle ride to MGH for treatment, and then come across the street to hang with us, or visit with her mom, walk to the Commons or just explore the area. Every evening knowing they had a bedroom then and there, they still took the two trains required to get back to the Hope Lodge. Madison found her peeps, and Rodger by nature is a social butterfly. Early on, scared newbies trickled in early in their journey to Boston. The tribal elders who had been there a while embraced them and soon enough, Madison was a tribal elder. Let's face it, cancer isn't supposed to impact children much less young adults. Hope Lodge didn't allow minors to stay there so every guest and caregiver was much older than their youngest possible guest. Angela, mom and I would take the train out and hang there a few days a week and that's when I saw pure kindness in people. If you haven't clicked the link above, here it is again and it'll make more sense. People helping people expecting nothing in return. Interesting. Not only was I "Madi's dad" at XMO, I was Madison's dad at the Hope Lodge too. Other guests (patients and caregivers) there were SO impressed that this hairless young woman faces her treatments so bravely and matter-of-factly. I was pulled aside be a couple of people who learned that I was her dad, and told me how she inspired them.
Madison's mom's and my collective purpose then was finding the best possible treatments wherever they may be, and jumping... the net would be there. The level of gratitude we have cannot be properly expressed in mere words for the people who helped us financially, but also for the volunteers and businesses that did so much, expecting absolutely nothing in return. So fast forward to 2018:
I'm pot-committed to the Chordoma Foundation and Chair their Community Advisory Board. I also co-moderate a chordoma support group with >2,300 chordoma patients, spouses-of, or parents of kids with chordoma. We're in 83 countries and get about 3-5 newbies a week. Someone newly diagnosed is frightened out of their wits because they did the same thing everyone does when they hear the word 'chordoma'... they Google it. Incorrect! There's a lot of old stuff on the internet. We point them to our cookbook called 'Getting Started', and send links to everything they need to know about chordoma, vetted doctors, FAQs, and a wealth of other current information that is all in one place, the Chordoma Foundation.
In 2013 I was shepherded in to the group as a terrified newbie and I spoke with a woman named Ann in Canada, who I'll never forget. Ever. She was a tribal elder then and we spoke on the phone for about an hour. In the beginning of the conversation everything felt like it was falling apart. Towards the end, it felt like things could actually fall in to place. Jump, and the new will be there. The group is absolutely amazing. As Sharon (the other moderator) and I admit and introduce new members, there are typically 15-20 welcome messages the first day from other chordoma patients/survivors or parents from all over the world. I'm very proud of the group! They welcome newbies with open arms, share their tribal wisdom and experiences, answer questions, and many people offer to talk over the phone or meet for coffee at times.
So there are a couple of purposes, another was determining if/how I can help the Conejo Valley Village, a local non-profit. I stuck my toe in the water, you can read about it in their April 2019 newsletter, link here. I can't believe how many outstanding human beings there are, just neighbors helping neighbors.
About two years ago my mom stopped calling me for rides to doctors, Costco, the vet with her dog, grocery shopping, etc. I'll tell you, people in their 80s see a lot of different doctors... and often, quite amazing. Hmmm, she stopped asking for rides, she lives alone (by her choice), and isn't asking for help. What goes? Granted I was relieved that I wasn't the designated chauffeur or in charge of throwing un-distinguishable grey-matter out from her fridge, but I suddenly became very leery when she told me new neighbors popped up that to help, a husband and wife named Carr and Deb. While there is pure kindness in the world, there is evil too. Now then! People she just met driving my mom all over, helping organize my her mail, taking her grocery shopping, to Costco, dog to the vet... I smelled a rat, two in fact. Who are these these do-gooders who popped in to my mom's world and weaseled their way in to her good graces? I gotta tell ya something you already know: Phone and email scams specifically target our elderly, whether someone calling saying their Social Security account will be frozen or any one of a dozen email or phone scams, seniors living alone are at real risk and I know of two who had fallen for the same scam. It cost one of them $5,000. The other actually other went to her bank to get $5,000 in cash. The teller asked why, and Carolyn explained that her grandson had been arrested and the field jail can't process credit cards and won't take checks. The fake police used her grandson's Facebook page to see what festival he was at, figured out who his grandmother on Facebook, then found her phone number. Sneaky bastards, telling Carolyn her grandson and using his name was at a festival... arrested for drunk-in-public, and he didn't want to infuriate his dad by calling him to pay the fine.
Elderly are especially vulnerable targets. Regarding my mom... trust but verify. I did, and couldn't freaking believe it. The net of what I discovered is in the Village April newsletter, link above. I hadn't witnessed this type of purity in volunteers until we were at the Hope Lodge, and I was 55. Look who's all grown up! I saw it again at Christopher's Haven, and again at the Family house in SF. They're all there bringing in companies who donate meals and services to ensure patient's who must travel for treatment have the best scenario possible available, at little to no cost.
Seniors living alone actually seem to retain most of their marbles, but judgement can diminish over time (along with their filters :-)
We were very lucky and blessed on so many levels. After being on a wait-list, the Hope Lodge called saying they had a room available for the whole six weeks. Madison wasn't at all keen on it but the cost was zero. When my friend Jan finally convinced me that I was a stubborn ass for not asking for help because people frantically wanted to, I thought this may work. So the plan: Angela and I get an apartment across the street from the Hospital, Colleen another apartment, and I felt what would be best for Madison was to give the Hope Lodge an honest try. I stayed overnight with her in the tiny suite (one of 40) for the first few nights. Rodger flew in and Madison was a little more amiable to trying it some more. The easiest thing would have been to simply have Madi and Rodger have the second bedroom in our apartment. Radiation treatments only lasted 15 minutes per day, so the rest of the time would be staying with Angela and me? The Hope Lodge was the first experience I had that opened my eyes to how truly good people can be, I'd touched on that here. Angela volunteered there, pictured in that link. Madison summed it up nicely once she'd settled in to the Hope Lodge. We were at a fundraiser for the Hope Lodge and someone asked her what made it special. Madison said everyone there had traveled to Boston for cancer treatment, but people want to get to know each other.. cancer mostly not talked about was is just something they all had in common.
Every week day, Madison and Rodger would take the 30 minute shuttle ride to MGH for treatment, and then come across the street to hang with us, or visit with her mom, walk to the Commons or just explore the area. Every evening knowing they had a bedroom then and there, they still took the two trains required to get back to the Hope Lodge. Madison found her peeps, and Rodger by nature is a social butterfly. Early on, scared newbies trickled in early in their journey to Boston. The tribal elders who had been there a while embraced them and soon enough, Madison was a tribal elder. Let's face it, cancer isn't supposed to impact children much less young adults. Hope Lodge didn't allow minors to stay there so every guest and caregiver was much older than their youngest possible guest. Angela, mom and I would take the train out and hang there a few days a week and that's when I saw pure kindness in people. If you haven't clicked the link above, here it is again and it'll make more sense. People helping people expecting nothing in return. Interesting. Not only was I "Madi's dad" at XMO, I was Madison's dad at the Hope Lodge too. Other guests (patients and caregivers) there were SO impressed that this hairless young woman faces her treatments so bravely and matter-of-factly. I was pulled aside be a couple of people who learned that I was her dad, and told me how she inspired them.
Madison's mom's and my collective purpose then was finding the best possible treatments wherever they may be, and jumping... the net would be there. The level of gratitude we have cannot be properly expressed in mere words for the people who helped us financially, but also for the volunteers and businesses that did so much, expecting absolutely nothing in return. So fast forward to 2018:
I'm pot-committed to the Chordoma Foundation and Chair their Community Advisory Board. I also co-moderate a chordoma support group with >2,300 chordoma patients, spouses-of, or parents of kids with chordoma. We're in 83 countries and get about 3-5 newbies a week. Someone newly diagnosed is frightened out of their wits because they did the same thing everyone does when they hear the word 'chordoma'... they Google it. Incorrect! There's a lot of old stuff on the internet. We point them to our cookbook called 'Getting Started', and send links to everything they need to know about chordoma, vetted doctors, FAQs, and a wealth of other current information that is all in one place, the Chordoma Foundation.
In 2013 I was shepherded in to the group as a terrified newbie and I spoke with a woman named Ann in Canada, who I'll never forget. Ever. She was a tribal elder then and we spoke on the phone for about an hour. In the beginning of the conversation everything felt like it was falling apart. Towards the end, it felt like things could actually fall in to place. Jump, and the new will be there. The group is absolutely amazing. As Sharon (the other moderator) and I admit and introduce new members, there are typically 15-20 welcome messages the first day from other chordoma patients/survivors or parents from all over the world. I'm very proud of the group! They welcome newbies with open arms, share their tribal wisdom and experiences, answer questions, and many people offer to talk over the phone or meet for coffee at times.
So there are a couple of purposes, another was determining if/how I can help the Conejo Valley Village, a local non-profit. I stuck my toe in the water, you can read about it in their April 2019 newsletter, link here. I can't believe how many outstanding human beings there are, just neighbors helping neighbors.
About two years ago my mom stopped calling me for rides to doctors, Costco, the vet with her dog, grocery shopping, etc. I'll tell you, people in their 80s see a lot of different doctors... and often, quite amazing. Hmmm, she stopped asking for rides, she lives alone (by her choice), and isn't asking for help. What goes? Granted I was relieved that I wasn't the designated chauffeur or in charge of throwing un-distinguishable grey-matter out from her fridge, but I suddenly became very leery when she told me new neighbors popped up that to help, a husband and wife named Carr and Deb. While there is pure kindness in the world, there is evil too. Now then! People she just met driving my mom all over, helping organize my her mail, taking her grocery shopping, to Costco, dog to the vet... I smelled a rat, two in fact. Who are these these do-gooders who popped in to my mom's world and weaseled their way in to her good graces? I gotta tell ya something you already know: Phone and email scams specifically target our elderly, whether someone calling saying their Social Security account will be frozen or any one of a dozen email or phone scams, seniors living alone are at real risk and I know of two who had fallen for the same scam. It cost one of them $5,000. The other actually other went to her bank to get $5,000 in cash. The teller asked why, and Carolyn explained that her grandson had been arrested and the field jail can't process credit cards and won't take checks. The fake police used her grandson's Facebook page to see what festival he was at, figured out who his grandmother on Facebook, then found her phone number. Sneaky bastards, telling Carolyn her grandson and using his name was at a festival... arrested for drunk-in-public, and he didn't want to infuriate his dad by calling him to pay the fine.
Elderly are especially vulnerable targets. Regarding my mom... trust but verify. I did, and couldn't freaking believe it. The net of what I discovered is in the Village April newsletter, link above. I hadn't witnessed this type of purity in volunteers until we were at the Hope Lodge, and I was 55. Look who's all grown up! I saw it again at Christopher's Haven, and again at the Family house in SF. They're all there bringing in companies who donate meals and services to ensure patient's who must travel for treatment have the best scenario possible available, at little to no cost.
Seniors living alone actually seem to retain most of their marbles, but judgement can diminish over time (along with their filters :-)
