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Gummy Bears

5/30/2018

Marleigh sent me a note last night titled 'Gummy Bears', pasted in italics below. Setting the framework: Madison went with the Schwartz's to their Colorado cabin for New Years 2016.

Gummy Bears. That's another random thing that reminds me of Madison. We went out to the middle of nowhere back-country cabin/bar to celebrate. We had to snowmobile to get there and it was just Madison, Bradon, Andrew, and myself. Anticipating some type of festivities we went in only to find a handful of drunken mountain men. We awkwardly grabbed a table and tried to look comfortable. A large man in overalls named Todd approached us with a plastic cups filled with "moonshine soaked gummy bears"... and he was slurring. Offering them to each of us, Madi was the first who reached her hand into the plastic cup and grabbed a few and promptly ate them. She had the best excuse not to eat them since at this point she couldn't easily swallow, she did anyway, so we all had to follow suit. The man then happily proceeded to talk with us while licking his fingers and reaching back into the cup over and over again.
Thanks Madi for guilting us into creepy-Todd's saliva moonshine gummy bears... I'll never forget that :-)

Marleigh, thanks for sharing!! Some of my most memorable pictures from that trip and I wasn't even there! This was clearly unforgettable for Madi, for her family too.

Are Unspoken Truths A Lie?

5/25/2018

Hello everyone. It comes as no surprise how much pride Madison's moms and I feel when we reflect back, so some reflections and a couple of confessions today. As you're aware Madison passed away very peacefully on a Thursday. Oddly but fondly I look back to the days preceding that feeling enormously privileged. Madison's nurse Jan had later confided in me that Madi wanted to 'make it through the holidays' for us, and I mean all of us... everybody she loved, not just moms and me. She knew that her mortal life was approaching, but she never stopped being the colorful and engaging entity that she was.... and still is.

I had updated this page on the Monday, Tuesday, and Wednesday link here before the Thursday she passed. Since we had a second bed in her room, we continued to watch movies, chatted lightly and even deeply when she wanted to, and took naps early that week. She was engaging, talkative, a tad foggy coming out of hibernation mode the prior weekend, and seemingly content and mostly pain free.

Looking back: I promised Madison that I would never lie to her, never hold anything back, and would never sell rainbows and unicorns. While she called the milligram count of each dose of pain meds, she trusted us with her food pump and the hydration input via her feeding tube. One of the things we were taught; occasionally check the contents of her stomach a few hours after pushing fluids. It's easy to do and so subtle that Madison didn't notice and stopped paying attention. Madison's mom bunked with her that Tuesday night: On Wednesday morning Madison still wasn't processing any fluids, meaning that her body was rapidly shutting down. If we push a box of food and check the contents of her belly a couple of hours later, most of it shouldn't be there. Mo/Tu/We was a pattern, most of the fluid pushed in was still in there. Confirming with her doctor and nurse, I called Madison's mom and let her know what's going on reiterating what it means, and that Madison may not survive much longer. Madison's mom and hubby Micheal came over for a bit, and mom spent the night in Madison's room. They chatted a bit, said some prayers, and Madison went to sleep on Wednesday night while Colleen was on high alert. She came in and got me about 4 AM: Madison's oxygen levels were slowly dropping. At about 6 AM I let Angela know, and the three of us were there until the end of her mortal life a few hours later.

Again, Madison's quest was making it through the holidays... she knew she was leaving her mortal body soon, just when, but she did know it wouldn't be long. So confession #1: we knew but had guidance that it's best not to tell Madison that she suddenly and rapidly started declining. What if anything do we tell her? We were given guidance that a sense of panic might set in, so we said nothing to her other than the normal chit chat, expressions of love, and Madison even brought up giving me all of her passwords to all of her accounts in the preceding days. Reflecting back to a seminar we went to about death: the speaker was a counselor and pastor in a cancer unit and had counseled several thousands of people as they approached end of life. The overwhelming consistency for those people: they wanted to go quickly, pain-free, and in their sleep. Actually knowing versus just sensing that one's body is actually shutting down might feel like slowly drowning emotionally, so based upon the guidance we received, we didn't tell Madi what she already knew, what her body was telling her. Acceptance is not agreement, none of this is okay... it just, and none of us are immortal

Only a few people who knew Madison well knew that she had visible tumors on her ribs and around that side of her back. Since August 2017 she authorized us to take pictures regularly to share and consult with her chordoma treatment teams. We were advised that radiation to her ribs/back wouldn't be curative but it might help shrink the lesions some, ideally reducing the pain and a need for heavier pain meds. Over time the growths did shrink. Madison would ask if they look smaller and the answer is "no, they are smaller". She was extremely bright and medically savvy, and knew that a fresh MRI or CT was just a phone call away. We didn't want to offer or dismiss any variations of hope, but we did let her answer her own questions. From prior imaging Madison knew that she had more lesions along her spine involving numerous vertebrae. She also knew that the pain was gradually increasing along her spine. The areas along her spine and a couple of floaters couldn't be hit with radiation given their proximity to vital organs. Madison mentioned that she knew what was going on in her spine because of the need for increasing amounts of pain meds, saying an MRI would just confirm what she actually doesn't want to know. That said, every very time she asked about the lump on her ribs, she was reminded her how simple it'd be to get an MRI. Her logical mind and her heart were in a tug-of-war. Madi wanted to embrace hope, maybe even a miracle and decided that she did want to know, and had a series of MRIs very early in December. I received a phone call a couple of days later, the results were in and was told "it's bad, it's actually very bad, I'm so sorry Chris" and he asked if I wanted to see the actual imaging. Damn but yes. I was emailed the imaging and we discussed the details over the phone. Damn.

When Madison awoke later that morning she asked if I heard anything... gulp, here goes. I let her know the results confirmed our fears telling her very generally that there's significant progression along her spine. Through her tears she said she knew it, which didn't reduce the blow. One can never let go of hope, but the definition of it changes given each of our own individual circumstances. She had to tell the friends of hers who knew she was having the MRIs, more tears: Madi felt so bad making others feel so bad. Amazingly they cried, but seemed to quickly get past it, kind of like 'okay, where were we?' A renewed hope was focused on being with friends, family, outings, and going to church as long as humanly possible. Never losing her sense of humor, Madison mentioned to her friend Marleigh that she's turning in to a skin-suit filled with Mayonnaise since she can't get to the gym.

Confession #2: what I didn't tell Madison was that she basically had a broken back. There were three fractured and one broken vertebrae. Add to that, many new abdominal tumors. Since Madison was still asleep I called a highly regarded therapist who advised me directly to consider not telling Madison. If Madi knew, would she forego another trip to the beach, wave off church and just forfeit all movement? The therapist also advised me not tell anyone who even might treat her differently, including both moms. I obviously let Madison's hospice team know and they were okay with it, mums the word... nobody can know.

So there you have it! So if I ramble on about Madison's faith, hope, courage, tenacity, I'll again invite you look to back at the November posts, link here. She was able to actually walk and stand, obviously not for the duration of the Color Run, hence the wheelchair. Those pics were taken on November 19, just a couple of weeks before the MRI. Given the fractures didn't likely didn't happen in two short weeks, how long had her spine been this way... back to October?! How Madison could walk and remained mobile for even another month after the Color Run defies reason and logic, so I'm labeling it a blessing.

The gent I mentioned at the Mother's day gathering in the post below looked so sad. Mom's and I have all see the faces of people feeling so sad, but dang... we are so incredibly proud too! What I felt like saying was 'If you have three or four hours I'll tell you a great story of immense faith, how hope actually evolved with the stages of her disease, courage'.

Marleigh posted a wonderful picture on FB wearing a beautiful dress that Madi wanted her to have, writing "I had the privilege of wearing one of my best friends dresses. These engagement photos made infinitely more special to me because I got to have a little bit of Madison there. I can't wait to see you again, my friend". What a wonderful gift to us, thank you Marleigh.

Knowing that Madi would not us sitting around like a couple of sad-sacks reminiscing about what should have been last Sunday, Angela and I painted the wall around the pool which has been on our paint-bucket list of chores. Funny: just because it was getting cold, getting dark and she was hungry, Angela actually thought she could be done for the day. Sheeeeesh!

A Thousand Words

5/21/2018

A Birthday We All Hoped For

5/20/2018

Hello to Madison's friends and followers,
I was able to transition Madison's Facebook page to a remembrance page: nobody can log on to or ever hack her account, and the FB birthday reminders stop to all FB friends. While she would have been 23 today Sunday, it's not necessarily an easy reminder for some, so whatever your connection is with Madison... what if anything do we post on Facebook?! Fond memories or pictures are all okay, and it doesn't have to be on a milestone like her birthday. I find it cathartic for me to write to and about her.

The Color Run 2018: Madison's friend Julie sent me an email recently. There's Color Run planned in Thousand Oaks this year, link here. Cool! I have such fond memories of the 2017 run, story and pictures here. Madison's physician Peter and her nurse Jan surprised her too! Jan RN took a bunch of pics, link here. Being with her CSC peeps was so special to Madison and a very funny story for me. Madi insisted on driving up with them, but she wanted a parent to be up in Ventura lurking in the shadows in case these was an onset of pain. Cool...she knew we'd play whatever role she wanted, and mums and I wouldn't have to worry with one of us -not- being there, despite her doctor and nurse present... that Madison didn't know about. As luck would have it Jan RN played the role of Paparazzi and the pics are forever treasured, thanks Jan!

Chordoma research, a bit about that: the couple of very promising things to report from the Chordoma Foundation. There is a new $1.5M initiative to jump-start research for the type of disease that Madi had, poorly differentiated chordoma. $1.3M was donated from three families of young children who have same ludicrously rare subtype that Madi had, one in 20 million. This initiative is expected to launch at least one clinical trial for pediatric patients, and will also help to guide subsequent investments in this specific drug development. More about understanding chordoma in children and young adults at this link... you might recognize a picture or two... the first fish that didn't get away (that did when she released it : )

The Mother's day gala at Dale and Colleen's last week was a huge success, a huge thanks to both of them, and to Steven, Anthony, Jim and anyone else who helped put that together, it was truly amazing! 19 mums even received a take-home floral arraignment! Angela and I saw some friends that we had not seen since before Madi's passing, which is always touching. One gent stared unblinkingly in to my eyes telling me that 'she's in a better place' and 'no longer is living in pain'. What I said was "thank you", but what I was thinking was that her place should be here with us, and her pain was so well managed that you don't understand. That said, he had the best intentions in his heart. It's times like these that I feel like trumpeting my pride, and walking people through her final months. Prior to this journey, I may have said the same things to me with the purest of intentions... but I'm not buying this as part of His plan. As a pastor in a hospital once told me "we know there is sin in the world, but disease and tragedies are indiscriminate (so no, all things do not happen for a reason IMO). Another interesting observation last Sunday... a few people asked Angela "how is Chris doing?" Michael (Madi's step-dad) likely hears the same questions about Colleen's well-being. (Apparently we're not expected to be completely forthright :-) Huh! I can't yet convince Angela to make stuff up. So, if you ever ask Angela or Michael how mum or dad are doing and the responses are wild patterns of concern that will hopefully decrease in intensity and duration, step back and consider this: we really are mostly okay and the exotic behavior may or may not be factual.
On Friday Colleen shared a couple of her favorite recent pics of Madison. In one, you can see why Bailey was continually insistent on being on her human's bed. The other was a selfie: You can only imagine the noises that comes out of a chubby bulldog that has a flat face, and can see it in Madi's smirk, classic!

Pssssst, hi Shug! I'd be remiss if I didn't tell you that I'm thinking of you today... everyday, moms do too. Despite the fact that you were born on a May 20th, it would seem silly even suggesting a 'happy birthday' wish, but it is impossible not to celebrate you. We miss you and are so proud of you on so many levels.

Love,
Dad

It Was a Dry Heat

5/13/2018

Angela and I returned from a road trip on Friday. We visited close friends in Chandler AZ, and then family in Prescott. I wish we had more time for both, but there were things we wanted to see while we were in the region, and wanted to be back home in time for Mother's Day. On the way out of Prescott we stopped in Jerome for lunch, went to the museum and strolled through the stores. Next stop, off to Flagstaff to stroll around there. That night we landed in Williams: more food of course, shopping, and found a great hotel which looked like a Motel-5 from the outside. It had a very basic appearance but based upon a ton of great feedback from Tripadvisor we chose to stay there. The person who checked us in said "checkout tomorrow is whenever, take your time". Wow! The bed was new, the prints in our room were amazing; a surprisingly nice hotel experience with a lesson... don't judge a book by it's cover. From there, up to the Grand Canyon... my first time, truly breathtaking. One of the common themes we noticed was how kind and truly sincere people were in all of the the Arizona cities.

Next stop, Laughlin Nevada. Our plan, get a decent room at a decent rate, have fun while being weary of their plan... to get us tanked on very strong 'free' booze and have us splitting kings at the blackjack table. Blackjack turned out to be black-out, more below. It was nice being in slow-paced Laughlin along the Colorado River versus Vegas.

In all of the stores in all of the rural towns, it was impossible not to think of buying something for Madison or ever screwier, for her bedroom. We don't want it to be a shrine, but we can't yet -not- refer to it as "Madi's Room". Buying things for her or for her room would be a tad odd, and I'd wager her mum had the same challenge when she and Michael were in Hawaii. Adding to that, Madi's birthday... May 20th. I posted a couple of pics on Madi's Facebook Page and noted that we'll be transitioning it to a memorial site. That's easier said than done... it sounds so final. Not a day goes by that her moms or I don't think of her or look Up and tell her we miss her. We're tweens of sorts, logistically being 'empty nesters' while also being the proud parents of a truly remarkable and extremely wise young woman. It's official... we'll always be her parents, never empty-nesters!

In closing this thread, a couple of thoughts: Angela and I actually left Laughlin with more money than we arrived with, even after the hotel room and a full tank of gas. That ATM was one I couldn't walk past without snapping a pic, classic!

Most importantly, happy Mother's Day to Madison's mums, well to all moms! Mine went old-school and mailed Angela a Mother's Day card again this year. Pondering back to 2013, it was the Venetians who insisted upon helping our family during our journey. Make no mistake, Martians would have done anything but it was the all of the moms in our lives who rallied together and just 'did', announcing their intentions and meals and loving faces started showing up. That's what moms do and we humbly thank you all.

I have no clue how Madison's mums or I could have made it without one another, or each of you moms... Happy Mother's Day!

Love,
Chris

May 11th, 2018

5/11/2018

Hello, sorry I haven't updated this in a while. Angela and I have been traveling and it's never a good idea to socialize you will be or are out of town.

I had dumped all of the photos from Madi's phone on to my computer and just now going through them. May 2016: The pic below is from my phone... the stink eye we've all seen... or was it just me? This was on the way to the Cancer Support Community Fundraiser.

I'll some of my favorites from her phone over the weekend.