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Weekend Update #1

12/30/2017

Hello Madi Fans and Followers,
Unfortunately Madison's pain levels increased fairly quickly and significantly last night and this morning. She had a BFF visit scheduled but asked that it be postponed. Her doctor came out today and as in the past, has increased the base level pain meds to stay get ahead of it (it takes 3-4 days to take effect), but also increased the fact acting meds. That means Madi's potentially entering another hibernation mode. The fast acting meds mostly knock her out, and it'll take a few days for the base meds to kick in. Madison requested that any visitation requests are filtered through her dad over the weekend as Madi will likely be hibernating.

So Color Run 2018, who's in?! Madison's nurse and doctor went to cheer her on in November, more here. Madison's doctor basically bought her everything the concession stand had... add-to-cart. Madison's nurse Jan played the role of Paparazzi. We've already committed that we'd do the 2018 run next year in t-shirts with Madison's picture on it in her honor. Jan had a book made and presented it to Madison, which was an incredible moment. I think we've already decided on the picture for the t-shirts. Jan had a print laminated on wood and gave it to Madison's doctor. The incredible bond the they share is so special... almost magical.

The picture on the T-shirt we'll wear for the Color Run 2018 will be either the one Jan RN is holding, or the one here. We (Madi included) will figure out how it will benefit one of her favorite non-profit charities.

Thank you again Julie, Deanna, Theresa, and Agi for this unforgettable gift.

Love,
The Jones Family

Throwback Thursday

12/28/2017

There's a link here that outlines how we feel in to opportunity after opportunity in 2014. I just realized that I might not have posted the video from opening day at Fenway, link here. You can see more 2014 pictures in the Photo Gallery at this site.

Madison tends to like it chilly in the house. A recent throwback: Nathan a BFF of Madison's spent last Thursday and Friday here. They were watching a movie on the couch and Nathan was wearing a down jacket that was zipped up to his neck. Madison asked "does it feel warm in here" to which dad replied "maybe a little... would you like me to open the sliding glass door"? "Yes, please". I think Nathan may have felt like it was a cruel practical joke... it was 67 degrees in the house before we opened the door.

Lesson learned: When you come visit, bring a jacket and consider a wool hat too. Also note that depending upon whether Madison is awake or up to a brief visit, she may or may not even be up to a pop-in to her room or if she's on the couch in the den, we may take you in the living room. Madison likes Jamba Juice and Our Friend Windi knows it. She brought Madi a Razmataz and hung out with us for a bit. She left a tad disappointed that she couldn't even visit briefly with Madi. Our friends Joni and Steven made a huge lasagna tray and garlic bread, which was awesome... better than any I've every had at a restaurant, nicely done and thank you so much! When Steven dropped it off, Madison was barely awake but just not feeling up for a brief visit with him... not even a kiss on the forehead. Later that night Windi and Steven saw the picture of Madison out and about in front of Joanne's house. To suggest they weren't jealous would be an understatement. Steven was quite colorful: he saw that pic and called saying "F***, I was there an hour". (Heh heh heh... good to see you too Estebon :-)

Later in the week Anne and Bob dropped of tamales, rice, beans and homemade salsa. These too better than I've had at any restaurant, thank you guys SO much! Madison was in her room mostly asleep, which gave us time to visit and catch up with Bob and Anne. We're open to discussing the elephant in the room, in fact welcomed it. That said we also like hearing about what's going on with their kids, their lives. We welcome happy, and no it's not shallow to share that!. If things might not be going well in your lives, don't minimize or hide that either. People may think compared to Madison's scenario, they've got nothing to complain about. Incorrect. We care about you in good times and in bad.

I think some people might feel guilty visiting and being asked about happy things that are happening in their lives. Not the case, and no, don't stay away thinking we 'need space'. If you're bored one morning afternoon and looking for an excuse to visit, text dad and ask if Madi might want a Jamba Juice. Please understand that it's not the 'who' comes, it's the timing and several other factors that determines an 'if' and 'when' Madi's might be up for a pop-in or brief visit. When Madison was at Simi Adventist, the associate pastor stopped by. Within a minute he sensed that that 'now' wasn't a good time and promptly left. The next day there's a picture posted of a smiling Madi, Bailey on the bed, and Windi grinning in the background, link here. Pastor Alex may have thought... hmmm, what the heck? Again, it's not the who, it's the circumstances of the when. Let's be honest: Madison isn't necessarily fond of Windi but there she was anyway: it's all in the proper medication and timing... but mostly the medication.

Love,
The Joneses
Pssst Windi: you know she loves you dearly, from her core to yours. You too Estebon and SO many others. We were reminded yesterday by Pastor Simon that Jesus won't stop her loving no matter what, no matter when. I gotta tell ya I know Madison won't stop loving any of us simply because she leaves her mortal body. While there will be sadness, let's not forget to allow ourselves to also feel her love for each of us, which will be a beautiful 'always'... up until the point we're reunited, which will be glorious.

Midweek Update

12/27/2017

There's not much to report this week. Unfortunately Madi's pain has slowly increasing over the past few days but does remain well managed, so she's mostly quite comfortable considering. She took a full-blown shower today: the nursing assistant was almost as wet as Madi but they are getting better at it :-)

Simon, the pastor from Madison's church "The Place" visited today: he's an amazingly wise man and we both really enjoyed and benefited his visit.

Wishing Everyone Peace and Love

12/25/2017

Our un-Christmas dinner last night was perfect! Rather than spending a lot of time cooking and whatnot, we spent that time visiting. Doug, Rikke, Sam, and Hannah brought KFC over. Keeping it simple, we even used paper plates so no futzing around with dishes either.

Madison wanted to get outside last night so we bundled her up in blankets and took a stroll down the street to one of our dear friends home. We've been visiting Joann's on Christmas and Easter since Madison was five. Joann has decorated so over-the-top inside that her her home that it's been featured in the local newspaper. Seeing the love in Joann's eyes last night was a beautiful thing.

So today on December 25th our un-Christmas, we want to wish everyone peace, love, joy, and God bless you.

Weekend Update

12/24/2017

Nathan, one of Madison's BFFs, came over on Thursday and spent a couple of days and nights. It was a very nice visit. They hung out in the living room one evening and watched the feel-good movie "Love Actually". Since Madison typically needs to sleep in, Nathan took the opportunity on Friday morning to have his car serviced and get a smog check, fun stuff. Madison wanted to hang out in her room, so they hung out, fiddled on their laptops, and later watched the "The Holiday" in there Friday evening. Unfortunately church wasn't in the cards for Madison on Saturday. She didn't feel particularly rotten... she just simply didn't have the energy to get up early.

Madison's Aunt Sara mailed Madi a stuffed elephant, perfect for opening the door to discuss the elephant that's in the room or under the tree. We know all y'all love and worry about Madison and recognize how silly the question might sound... "how's Madi?" (people mostly tap dance around it). One of the things we've learned whether over the phone or in person, is to give people permission to ask questions about Madison by just bringing it up first.

We'd read and I'd posted about re-evaluating Christmas rituals (from David Kessler, a grief specialist: we'd seen him speak at the Cancer Support Community last year and attended his holiday grief Webinar last week). He wrote that there is imprinted pressure on our psyche to celebrate holidays... we've all had that since we were kids. He added that in a scenario like this our worlds lose the celebratory qualities, there's no need to fake it, and that it's actually okay to cancel Christmas. Later today Madi's Grandmother, aunt, uncle and cousins are coming over for a bit. It's not to celebrate Christmas, just happened to be the most convenient day to gather for family to gather that just happened to be Christmas eve. We talked about making a nice dinner, but then that would feel like Christmas. Given we have given permission to dismiss the gift-giving/receiving and other holiday rituals, we decided to keep it simple and will have and un-Christmas meal together.

On December 6th, Madi made the call to decorate the tree but there he was... the elephant in the room showed up. Madi was losing strength in her legs and becoming increasingly wobbly. Adding insult to injury, the song "All I Want For Christmas Is You" played out of the blue on the Amazon music channel. Ouch, each of us swallowing our tears. We didn't talk about it then and there, but did later. That was the point we decided (and had permission) to skip the holiday rituals this year. I think Madi did the tree for us, but that was the last ritual. When we see something Madi might want or use, we buy it and give it then and there... why wait until Christmas.

So we're going to get what we all wanted... "all I want for Christmas is you (Madi). We're at the acceptance part of this journey and we're at where we're at. No sugar-coating it, this is not okay... it just is. Each day we have with Madison is a gift and Madi seems to have a solid grasp of reality joining Him, while maintaining a sense of humor while she's still here. Colleen (mama bear) spent the night last night and will again tonight. Last Sunday her husband Michael brought over and cooked a great breakfast. (Psssst... Michael: what's for breakfast tomorrow : )

Wishing everyone peace and love.

Love,
The Jones/Johnson's

"It's Just My Legs"

12/21/2017

One of the morning medical rituals is 7AM meds. Most of the time we're able to sneak in to Madi's room and push them in her feeding tube without waking her up. Not today. She was fiddling (I think) with Twitter and Facebook, and mornings are always a great opportunity to chat if she wants company. This morning we discussed holiday rituals, read more about on holiday grief and as written earlier, we chatted that's it's okay to not send cards and not feel pressured to give or receive gifts. I was teasing Madison, trying to bait her in to saying something to people as she sees or speaks to them 'do you want to know what I really want for Christmas this year' (how's that for an attention getter, and pause letting it hang in the air a bit :-) Then tell them you've always wanted a Home Depot gift card. People will think huh... then probably realize perhaps someone put her up to it (and no, do not send Home Depot Gift cards, we wouldn't accept!).

Chatting about the upcoming weekend Madison mentioned going to Church on Saturday. Easy answer, what ever you want to do as long as it's not skydiving. While briefly discussing the logistics of getting her to Church Madi said "it's only my legs".

We all grieved her losing the mobility in her legs, but there is a better sense of acceptance, adaptation, and what's the next thing for her to look forward to.

Adapting to a New Normal

12/20/2017

As noted in the post below, Madison has lost the use of her legs and is adapting to a new normal. Losing leg function was a blow, no sugar coating it but was one of the potential realities along the latter part of this journey. Her pain is being managed well and it's been a quiet week, all things considered. Mama bear Colleen is here tonight and she and Madison are just hanging out. Madi's, her moms and dad are all adapting as well as can be expected given the circumstances.

Madison received a card this week from someone she met a few years ago in Boston while she was receiving proton radiation. He's apparently been following her story and wrote in the card:

"Madi,
I will always cherish meeting you. Your spirit, fight and joy were evident in your smile and presence. I remember telling my wife the day I met you how amazing and how strong you were. I knew the value of that moment immediately and it has stayed with me since. From what I saw in the videos and on the blog I knew you have touched so many moments and memories for many people".

Madison cried tears of joy. This further reinforced something that (only) she didn't fully comprehend until perhaps very recently: her bravery, grace and stubborn determination has inspired so many others. Madison is a member of a private online community: everyone there is impacted by chordoma. When it was announced that current treatment options have been exhausted, many people in the online chordoma village sent her some very touching cards. During the celebration of her life, the XMO Team and her Church family put together beautiful roses with dozens of hand written cards. Thank you all, we will cherish them forever. A distant relative King Jones articulated it s very nicely in the October archives, link here (towards the bottom in blue italics).

All of them were a solid foundation to Madison feeling she's inspired so many, but perhaps only recently has she come to accept the true impact that she will leave in her legacy.

Love,
The Jones family

Weekend Update

12/17/2017

Unfortunately given the progression of lesions along Madi’s spine, her legs have become weaker recently. While she has been giving her walker what-for, she’d lost complete use of both legs last Friday. So wait, what does this mean... is this the beginning of the end? No. The doctor suggested that nerve impingement along her spine cut off the electrical connections to her legs (not her heart or her mind, nor is not bedridden).

On Saturday Madison made the decision to have us remove her queen bed and bring in a motorized hospital bet. She can sit up with the press of a button on her own maintaining some sense of independence. If/as she's willing to come to the couch or get in the car, she'll obviously need more assistance.

Another perk of a smaller bed is that we could move a trundle bed in to her room. Last night mama-bear Colleen spent the night with her and a BFF Nathan (trundle in another room) spent the night and most of the day today. Colleen's husband joined us this morning and made a wonderful breakfast.

I'm sorry to report this news and no, and again she's not bedridden. For people who saw Madi a week ago at church, it may come as a shock when you see her next given the loss of movement in her legs. She may feel sad making people feel sad, but she's Madi. The facial expressions she sees, that her family sees, seems to be of extreme sadness. We've read that type of anxiety is fear, unexpressed. It's okay to talk about the elephant sleeping under the Christmas tree, but then move on to the next subject... like what's new in your life. Yes, really!

Love,
The Jones Family

Reevaluating Rituals

12/14/2017

Hello Madison Fans and Followers,

One of the traditional rituals for our family is Christmas cards, gatherings at friends homes, too much food, Christmas eve and gifts with Dad's family, and the same on Christmas day at Mom's. The Christmas trees are up, the houses both decorated inside and out, but what to put under the Christmas tree next the elephant that's already sitting there? Damn.

I was talking with Madi's grandmother last night and asked her what is she thinking about giving Madison for Christmas. There was silence. Exactly, I said. That opened the dialog about perhaps reevaluating our ritual this year. Yes, we will gather if/as Madison is up to it, but it won't be the traditional of gift-giving and celebration this year for our side of her family.

It's been a turbulent week, highs and lows. Madi's pain increased dramatically on Sunday, so base pain meds (long acting) were increased. With that, pain decreased somewhat perhaps avoiding a hibernation mode slumber, but the toll on her for the increased meds is reduced energy, strength, and sacrificing some stamina.

Looking back: In August Madison spent close to two weeks in the Simi Valley hospital. Yesterday she wanted to thank the nurses there, and remind them of the imprint they leave on patients who they may never see or hear from again. With a thank you all card and two giant boxes of cookies, Madison went to the second floor nursing station via wheel chair. Two nurses looked like they were just a few short breaths away from crying... so happy they made a hospitalization stay so tolerable for Madi. Then they tried to take a breath and the tears flowed, so happy they were able to make an unthinkable hospitalization/situation so comforting and compassionate.

So hows Madi now? Unfortunately this week she's become increasingly weaker needing higher doses of pain meds. Yesterday she could not easily get from car to wheelchair without assistance, but it was that important to her that she thank the Hospital staff personally.

We hope and pray that Madi rebounds from this episode of increased pain as she's done in the past, and only time will tell, so she's learned to take everything day by day, Yesterday Madi mentioned feeling like she's at a birthday party, but her Father keeps reminding her that she needs to be leaving soon. That sounded amazingly insightful and beautifully sad at the same time. She knows she'll see us all again. Yes we will all miss her, but the reunion in heaven will be glorious. We will never stop loving her and I know she'll never stop loving all of us.

God Bless,
The Jones Family

Weekend Update

12/8/2017

Seeing pictures of Madi at the Wild Animal Park and doing other things can make us forget that she has this dreaded disease, full of hope and filled with faith. The results of the imaging last week confirmed disease progression... all of us hoping and praying that wouldn't be the case. Damn. While the pain increased significantly over the past few months, it seemed to level out some in late November. The realist in Madison waived off scans a month ago saying "we know what's going on along my spine", perhaps not wanting validation that there hasn't been a miracle. It's her cancer, she's the boss. Madi's pain levels in late November had been very manageable so she chose to have scans for a couple of reasons. Again, damn: progression and morphing.

So do all things happen for a reason or believe God has a plan? Madison doesn't subscribe to either as it relates to her cancer... that this is part of His plan. Several people routinely suggest that with the best of intention, but she's not buying it. We do believe there is meaning in how we respond to all things that happen to us, even when they are not good things. Look at Madi: her ugly metastasis occurred in November 2016. Since, she's spent time with people she loves in Mammoth, Colorado and Idaho twice, and been a Winter and Summer camp counselor at XMO. On top of all that, eleven 2-3 day trips to San Francisco participating in a clinical trial. None of this is God's will... but perhaps His grace is shining through in the form of her character.

Love,
The Jones Family
(you can press <<<Previous button below to see the rest of the December posts)

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