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.
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!
