Blog Archives

Wednesday Update

2/28/2018

I'm not officially an XMO "Trainer" for the athletes but as an athletic supporter I was encouraged to make the Trainer run, great fun and surprisingly fast!

Last night one of the trainers spoke about hope and everything that means in this world and our next. It was excellent! After that there were two breakout session/round-tables. On hope: there was a young man who had lost his eyesight during a sporting event, completely blind. He was very attentive to a young man who recently lost his eyesight and seemed to be struggling. It was amazingly heartwarming... someone willing to help lead someone down the dark path to their new normal. These kids stories are sad and some quite tragic. I can hear them laughing and giggling as I type this and it's an amazing thing to see the blind mentoring the blind. We went to the mall yesterday. One stubborn chap named Tim holds his seeing eye stick off the ground like a ski pole. Austin asked "hey Tim, you here"? Tim was, then Austin said I don't hear any (stick) tapping dude, tap left, tap right or you're going down the stairs. I looked over and said that's okay, there's an Urgent Care at the bottom... there actually was. Anywho... blind mentoring the blind, I love it!

The other breakout session was about parenting as a blind woman: she lost her sight at age four and now early 20s, the mother of a two year old. Bryan mentioned that infants of blind parents are often cleaned better than with parents with perfect vision. Makes sense, aye?! If you gotta clean what you can't see it''ll be a full body wash with every diaper change, especially when both parents are completely blind. Mom noticed a disturbing lump on her infant boys chest and called out to her blind husband. Uh oh, another lump. They were just about to call for help but just as they were about to take a pic and text it to Bryan they figured out it was his nipples. Both parents had sight, but sadly lost it.

They told Bryan the story and he laughed. Someone with sight can only imagine highly detailed cleaning infants get when both parents are blind. Bryan was talking to Kiira about it: she was born blind and said "wait, what?! Why do men have nipples"?

The breakout session the night before last was about the benefits, challenges, and sharing experiences about having a guide dog, which I heard was excellent. This was hosted by the blind mother of the infant under lessons learned and info sharing: she wished she knew then what she knows now, and there were other young woman who were considering having kids, and other blind athletes who participated as well.

Hiya Madi- We agreed before you left that you'd find out why you were taken from us so early, and then let moms and I know when we get there. Another question if you please: why do males have nipples?
Love,
Dad

XMO Winter Camp 2018 - Let the Games Begin!

2/27/2018

As previously mentioned, Extreme Mobility Camps challenges, supports, and empowers visually empowered youth to reach their full potential. If you haven't yet thrown a few tax-deductible bucks their way, no dollar amount is too little.

Suspecting she might not make it a sixth season, Madi had asked dad if he might consider volunteering this year, wanting him to see the magic. This organization helped ignite Madison's spirituality and passion to pay-it-forward, immensely rewarding: she came home after each camp completely exhausted and happier and even more fulfilled each time. So in her legacy, there's no way I'm not going... er rather, not coming... I'm here in Colorado with XMO inspired by Madi's absolute determination to go in 2017, despite the very angry metastasis again, she wouldn't -not- come. She needed oxygen occasionally, a terrifying amount of fluid (we called tumor juice) was accumulating and needed to be drained while she was here, all while shepherding blind athletes to and through so many amazing experiences, a minimum of 16 hours a day.

So XMO 2018 so far in brief, day 2 of 8: about 65 blind and impaired athletes trainers, and facilitators arrived in Denver on Sunday, boarded vans and and traveled up the hill to Winter Park Colorado to the YMCA. Bryan, Mindy and a couple of other volunteers drove up with supplies, a few dozen cases of water, and sound equipment. On Sunday evening we had dinner at the YMCA, enjoyed some wonderful music, and everyone went back to their rooms. For every volunteer trainer in a room, there are two bunk-beds for four athletes and a bed for the trainer who plays the role as a mentor/camp counselor at night. The rooms are nice but cramped: imagine corralling four kids/young adults through this whole week, starting with getting dressed and snow-ready every morning by 7AM. Okay, picture this. at least two suitcases/bags per person and only a few can see only a shadow of their gear at most... without trying to trip over a seeing eye dog or other bags. I'm amazed, it flows and it all works extremely well! These kids are so excited to be here, we all are! In our van coming up the hill there were numerous newbies... haven't been here or anything like this before. It was kind of quite at first, some chatting, then giggling, a tough of sarcasm, then laughter... that was the music, truly heartwarming, didn't need Spotify! There were a couple of others who don't seem to have adapted very well... yet. Most haven't been away from home for anything like this. There are tribal elder youth here who embrace and help peer-guide the nervous newbies, who then learn and draw strength from the happy campers/athletes. We're just two days and I am so touched, so very impressed by these kids!

A few pics below, more to follow in the coming days.

Four people on snowmobiles taking 2-3 athletes at a time back up the hill with tubes on the front sleds, which is a lot steeper and faster than it looks. I guarantee you it surprised a lot of them. The snow-mobilers would blast them up to the top, they'd fly down the hill on tubes, rinse and repeat...12-15 trips for each athlete. While they do have a T-bar to drag campers slowly back up the hill, it's much more fun, a lot faster on snowmobiles, probably five times as many trips, and much less physically demanding at 9,000 feet elevation.

Monday afternoon we were off to the YMCA. Swimming, gymnastics, trampolining in to a giant pit filled with foam, basketball, etc. it's amazing to watch: these young men and women need to feel what's where, then just go for it. Once acclimated to the facility, they go out the doors to the bathroom. I perceive it as a sixth sense, having painted a map of what's where. Newbies like me ask if they need help... "naw, I'm good" and off they go with their canes.

Hearing Madi's stories and seeing the evolution of her spirituality and character, moms and I simply understood what she saw... the picture of Madison throwing snow in the air was taken after she and the monster hiding under her bed had come face to face. Acceptance is not agreement, cancer coming back is not okay, but you can't steel her joy.

I brought a bag of Madi's ashes here... having them hanging with me in my room with a view (for us), unless of course it's not legal to bring them abroad an airplane. If that's the case, that's not them pictured. Madi's BFFs Nathan, Marleigh, and I will determine where to sprinkle them in her favorite place on the planet, here, unless of course it's illegal in Colorado...

... as far as you know.

Love,
Madi's Dad

Dear Madi, I get it now and I'm only two days in, thanks for sharing! Oh yea, it happened again here too: While a number of people know my name... everybody knows me as "Madi's dad" (not Chris).

We all love and miss you here Shug, sending you love and we'll rejoice together again... when we see you. Please save space in your village and plenty of seats at your table.
Love,
Dad, the athletes, trainers, and facilitators at XMO

Back to Work, or a Man-Bun / Pony Tail?

2/22/2018

Am I a dog or a cat... Bailey certainly seems confused. Madi's moms and me: are we parents or empty-nesters... Bailey certainly seems confused. We dropped our car off for an oil change yesterday. We've been going there for 15 years and the owner asked excitedly "how's you daughter?" As Madi often said... dang-it.
It's always difficult making people so sad and feeling guilty they even asked. I hang on to stories like the one below. Neither the mechanic nor I had a couple of hours for me to go on and on, that it's okay to be sad, but dang... she was awesome and still lives on in our hearts and souls. I did say that, but he has two girls of his own... and can only imagine what he thinks I'm feeling. Then and there, so much pride.

Someone diagnosed with chordoma posted in an online support group last week, italics below:

Thank you Madison Rose. We never met or spoke, but you’ve had a significant impact on my life. I know of you through your dad. He introduced me and my wife to this (online) group. The story of your journey served as a template for mine.
Like you, I’m from Southern Cal. Like you, my tumor was in the high cervical spine and was treated at a bunch of hospitals including UCSF and MGH. I cannot help but feel that I followed in your footsteps. Laid in the same radiation gantry and surgery tables, recuperated in the same hospital beds, waited in the same sterile offices for the doctors’ frank assessments. I can’t help but think that the statistics my doctors incessantly recited included yours.
When I started my journey, my simple mind questioned why my tumor could not be killed with radiation alone. Multiple doctors insisted that massive spine surgery was the best way to “control” the tumor. Imagine my surprise when the doctors at (omitted) prescribed a single dose of massive radiation with no surgery. I was ecstatic; my wife circumspect. I kept asking why I should submit myself to life altering surgery when I could simply rely on the prescribed radiation. I rationalized that if the radiation did not work, I could consider surgery in the future.
In the end, it was the story of your journey that led me to decide to have surgery in addition to multiple rounds of radiation at MGH. I posited that if a teenage girl could endure it, so could I. Your story gave me the courage to make a life altering decision. In hindsight, it was the right decision. At my last exam, no residual tumor was detected. The spots on my lungs not metastatic.
Now, I seem to live my life in blocks of six months. Waiting for the next round of MRIs and exams to let me know where my journey lies. Know this, your indelible spirit will continue to be part of my journey. Every extra day I have with my wife includes vestiges of you.
We’ve never met. We’ve never spoken. But you are, and always will be, a guiding light. Thank you.

To the gent who posted it, thank you sincerely for this gift. Fyi we're going to open up our home in Simi Valley on March 18 at 2PM... this time a memorial celebration versus a living celebration. We'd love to meet you and exchange hugs.

Love,
Chris

Dear Madi - You can no longer suggest edits or omissions on this page :-) While you may be embarrassed, I feel that this is a story worth sharing. I left Brad (the mechanic) feeling sad which certainly wasn't my intent, but I walked out feeling so proud of you... too bad Brad and I didn't have a few hours... I have a few stories that might have left him feeling better than he did. Leaving there I felt like that geek in the Verizon commercial, like holding my arm out to the side and dropping the mic it on your behalf. I know that's not who you are, and we're not claiming any credit: you inspiring people had nothing to do me or your moms, in fact I feel a lot of it came from the loving people at The Place, your XMO experiences igniting your spirituality and passion to pay-it-forward, and your support group peeps and therapist: They all helped catapult you in to a remarkable, insightful, giving, and spiritual young woman so wise beyond your years. Thanks for being you Shug, we are so proud of you! That said, I'm pondering going back to work after XMO next week or maybe after the Chordoma Conference in Boston next month. Angela is thinking I should grow a ponytail in the interim, but I'm thinking about sporting a man-bun. Bailey is happy and healthy, but she does have her identity quirks as pictured above.

Tiny House House Hunters...

2/16/2018

One of the reality TV shows Madi liked was Tiny House Hunters: it features people who lived in 3-4,000 square foot homes moving in to a 'tiny house' that has only a couple hundred square feet living of space.

In late December I was hanging out with Madi and had fallen asleep. After I awoke she told me about the thoughts she had. She had already given prior permission and the password to her PC and it turns out that she had noted these thoughts, which I forwarded to my email. Being careful that I don't compromise her privacy on any level, I feel this musing is worthy of sharing. She told me about it...her attitude a quirky 'dang-it' along with sadness she'll be leaving moms and me soon.

We talked about that and conceded while a sad reality, but moms and I were blessed having her here, age 18-22 when 'normal' kids are beer-bonging at frat parties wanting to be away from their parents. Moms and dads are biologically wired to love our kids. Mom's and I grew to really like and admire Madi as a phenomenal and spiritual human being, an inspiration, a quirky comic, and reminded her of that again the four extra years we got with her. So "dad odd", yes, Madison was moms-odd too. Nathan, a BFF of Madison's, told me on Tuesday that Madison called Valentine's Day... Singles Awareness Day.

I've learned many things about myself over her journey, many of us did. It turns out I'm quite the wimp! I had a couple of simple surgeries in 2017 and I was very nervous, more so than I thought I'd be. Seeing pictures in Madison's phone reminded of what a baby I felt like. Given the garments and hat she was wearing in this pic, you might surmise she wasn't getting a pedicure. A selfie and photo-editing sunglasses, classic Madi. I don't know if the pic made it out of her phone to any social media feeds, but certainly worth sharing.

Dear Madison - I'm trying to eat breakfast and this image pops in to my head. Excuse me :-). We all miss you terribly and yes, I agree that it feels cathartic... writing helps me too.

Love,
Dad
P.S. Thanks for the reminder that I can be such a wimp

"The Beauty of the Light..."

2/11/2018

A looming to-do was to go through Madi's computer. She'd mentioned writing letters and all that implies, offered the screen-lock password, yet I waited until this weekend to muster up the strength to fire up her PC suspecting some very profound MS Word docs from her heart. Yup, bug time. Mentioned in a prior post was a memorial celebration penciled in for February 18. That date didn't pan out so we're postponing it until March and we'll confirm and let people know.

Angela and I reflected a lot during our Puerto Vallarta retreat knowing there were unopened letters on Madi's PC, and to her mum as well. When we got home I found/printed the letters to mums and I and they were hard to read... hence waiting a month plus, I knew that'd be the case. Some pictures too and thank God, no twerking videos :-) Another gem I think Madison drafted but didn't post/send in blue ink, copy/pasted below. "Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous hand. – Isaiah 41:10. But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

She wrote "My hands are pried open to the dream I had for myself. What a beautiful promise that is. On December 9th (2016), I was re-diagnosed with cancer after they found metastatic disease that spread to the lining of my right lung. I know this may come to a shock. I’ve been hesitant to share for a multitude of reasons, but mostly because I wanted to keep some semblance of “hey, look! I’m normal too!” But I’m not, and if I’m honest, my life isn’t all avocados and sunshine either. I’ve been returned to a place I know well. I’m familiar with hospitals, side effects, and scars. This cancer was the monster looming under my bed and now we are face to face."

Madison added: "For anyone who has a loved one dealing with a hardship, you don’t need to know what to say, just show up. My hands are pried open to the plans I had for myself. I don’t always feel brave or positive. I didn’t want this to be my life at twenty-one, but this is where I am. Somehow there is beauty in being able to see the tension between life and death. The beauty of the light owes much of its existence to the darkness."

Madison at UCSF, clinical trial appointment

In The Arms Of The Angels...

2/9/2018

Angela and I are back home from our reunion retreat in Puerto Vallarta... reflections, reminiscing, and a renewed connection other than Angela being 'the other woman'. Again, she fully understood and accepted that role. Madi being a realist had encouraged us to go and was quite inquisitive about the 'where' after all is said and done. We had asked where she might want her ashes spread... all we needed was an excuse to go to one of her favorite places but she wouldn't take the bait, so Ireland will have to wait.

Our friends Tony and Gabe retired in Puerto Vallarta a couple of years ago and it was wonderful spending time with them. Both spend an enormous amount of time volunteering for a nonprofit that coordinates physicians traveling in to do cleft palate surgery and another cause... beans and rice. In impoverished rural villages in Mexico, parents sending their kids going to school isn't high on the priority list when they can be working in the fields. But! When kids are fed at schools, that's a good reason for parents to ensure their children get a good meal: there comes a time when those kids crave knowledge and are transformed, then simply won't -not- go. Genius!

So... we get back to from Mexico late last night and needed a few things from the store today. Getting in the car, it's all-stop. How can it be that Sarah McLachlan is Madi's appointed delegate, and Sarah's "may you find some comfort here" song is playing? Madi wanted us to to go someplace and renew/enrich our connection, then she welcomed us back with that song playing on the radio in my car, or coincidence?

We don't believe in coincidence.

"Dad, you're going to get your ass kicked!"

2/4/2018

Angela and I are on a ridiculously inexpensive reunion retreat to help rediscover our individual and combined roles on planet earth as a couple that no longer has the privilege of being 'cancer parents/caregivers', Colleen obviously included (but not on this trip :-). It was nice to be able to unplug in Puerto Vallarta where we saw happy faces of vacationing strangers, restaurant owners happy to see, etc. Locally we saw the extremely understandably sad faces of our friends and family. We've been pretty busy the last few years and during quiet times now, it feels almost selfish for me to miss Madison so much knowing she wouldn't want that, easier said than done, which was part of her sadness leaving mom's and I behind. I know Madi felt extreme sadness having to leave her close friends and relatives behind too. I can't honestly say I'm relieved because she's no longer in pain... that was managed quite well. For me... it's both so incredibly proud while extremely sad, I'd be lying if I said otherwise. I try to focus on her bravery at the many forks in the road along cancer journey, which truly inspired me/most of us. I'd also be lying if I didn't feel her sense of sadness because she'll never get to know the even more remarkable woman she'd be at age 30, 40, etc., nor being able frolic with her BFFs along the way. Another humble reminder of the two certainties in life.

So when the are no more forks in the road, no U-turns signs, how do you face what can be perceived by some as a dead-end? How do you say goodbye or until we meet again? With absolute faith... He will show you the way. Given the incredible sunrise that tearful January morning I actually saw the light... Madi did too, I'm certain of that. Praying for miracles... the show-me-a sign came a tad late in the game for me, I never stopped believing and He did come through: I guess I appreciated seeing an oh-my-God visual reference, but Madi already knew her way Home.

So does one say goodbye or until we meet again when many who knew her from junior and high school who were FB friends, but didn't know what was going on? Madi drafted a note, screen print below... the bottom paragraph says it all. I don't think she ever posted or sent it but it rings so true, so worth sharing. A humble thanks to everyone who loved her... she felt ya.

Angela and I are finalizing what a tribute might look like. As mentioned, we wanted to do something but uncertain what to call it... Celebration 3 dot O? Madi had asked if there'd be another, we think she'd want one, so we're penciling in a day in mid-March (Feb 18 won't work) at her El Monte Drive house, date TBD.. While there may be tears, she wouldn't want sadness... perhaps a touching or funny story or two, so here's a gem: looking back a decade plus, I've always had Walking Shoe sandals. My mom (Madi's grandma) had a similar pair, just bright white and grandmaish, but not rugged and manly like my mandals pictured above. When Madison was about 10 she and I were about to walk in to a biker store for something I needed: completely serious Madison said "Dad, no, stop! You'll get your ass kicked if you go in there with those on". True story, thanks to Steven for recently reminding me of that gem!

Worth re-viewing if you have tissue close by, she chose to celebrate her life in September. We're amazingly proud of her... always will be.