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A Year Ago Today...

12/24/2014

 
On Christmas Eve 2013 Madi was hospitalized for an infection following her first round of chemo. It was a very hard, a very dark time. I've told the following story to several people because it was such an inspiration to Madi as well as her family. The long term impacts of this and others kindness will span many decades as we’ll be paying-it-forward.  

Christmas Eve 2013 three people tiptoed in to Madi’s hospital room and said "we heard you were here... is it okay if we drop this off?" Thinking they were perhaps from Madi's church or maybe even had the wrong room I asked who they were here to see. The gent repeated the same thing "we heard you were here..." obviously wanting to stay anonymous. 

They presented Madi with a glass Santa boot full of candy, an Amazon gift card, a wool cap, fuzzy slippers, chap stick, and a Christmas card signed by 20+ people… we didn't recognize any names. Asked again who we can thank, they smiled and made a graceful exit with a warm ‘merry Christmas’. I asked the floor nurse who they were and she smirked knowing these people wished to remain anonymous and said ‘they do this every year’. To say we were touched would be like hearing the dentist suggest ‘you might feel some discomfort’ without any novocaine. The kindness family, friends, and strangers has been overwhelming in a way… in a very good way.  

Just short of a bribe we learned the three gift-givers were managers from a local grocery store and the Christmas card was signed by the employees. Committed to thanking them I went to the store carrying a picture of Madi in her hospital bed with the gifts and the Christmas card they gave her. I asked for the store manager and had to wait a bit. Store employees likely perceived me as a disgruntled future ex-customer. The manager came up front and I could see she recognized me but didn't know from where. The plan to stay composed, I tried to thank her without weeping like an 14 year old Amish widow.

That didn't work.

I showed her the card, and babbled-on how thankful we were to complete strangers, such kind human beings and we're so very touched during such a frightening and difficult time… and then she started bawling. Employees concerned that the bad-man made their manager cry, some were slowly approaching wondering what the heck is up. I showed them the picture of Madi in her hospital bed with the gifts they’d all chipped in on, the card, and thanked them profusely through my tears. Others got teary, so touched that they made such an impact.

Well that did not go as planned... so how is Madi now? She continues to regain weight, stamina, has some bounce in her step, and has a dark mat of hair on her head. Her oncologist isn't a fan of sushi (taboo during chemo). During the last appointment Madi asked if she can finally have sushi. The doctor responded "I don't see why but go ahead... it'll be fine". I asked her if Madi is cleared to can clean the cat box (ongoing joke): the doctor replied "ABSOLUTELY NOT"... as she winked at Madi.

Over the last year we have shared tears of fears, challenges, and triumphs with our loving family and friends, and with complete strangers. Thank you for standing beside us all year, for your love, generous support, and prayers.

We wish you each a very Merry Christmas or Happy Hanukkah, and hope 2015 brings good health to you and your families, with happiness, faith, and only tears of joy. 
  

Love,
The Jones Family


Four Brave Journeryers

12/20/2014

 
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We had the privilege of having lunch again with Adriane, and meeting Pam and Michael for the first time. Each has been on the chordoma journey over the last decade. Chemo and surgery and radiation, oh my. 

Greg at the Hope Lodge in Boston summed it up nicely. "What is it with you (chordoma) people!!  You always seem to find one another and congregate!"  


May that always be the case. 

The force is strong within each of them... each is one in a million in more ways than one!

MRI Results Are In! 

12/18/2014

 
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I'll start with the end of this post, first. Great news! Madi had an MRI today and all indications are there are no abnormalities, no sign of regrowth, etc. Outstanding news! 

With some cancers patients go through the various treatments and after x years of clean scans, they're labeled 'cancer free'.  Chordoma is a sneaky bugger, which is why MRIs are scheduled every 3 months for a several years, then every 6 months, then annually. If there are ever any abnormalities, the medical team can jump on it.  


Next Step: remove the chemo port, which is another simple procedure. 

So how's Madi?! She's registered for college, classes start January 12th. She's putting on weight, regaining stamina, and growing noticeable fuzz/stubble on her noggin... eye brows too  :-) 


Would have been cool earrings...

12/17/2014

 
We brought home the  IVC filter pictured below: Madison said "too bad there aren't two... would have been cool earrings.  

Minor Procedure Completed Successfully

12/16/2014

 
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The medical team is in clean-up mode. Today Madison had a procedure done to remove an IVC filter (designed to prevent blood clots from mobilizing when she had surgery on her leg for the bone graft) in an artery that's in her lower abdomen. This was inserted through her groin in June... time to come out.  

It's a lot larger than we thought! Now, simple logic implies it's not coming out from the same route... there's no backing that thing out! 

Today they went in through an artery in her neck, and fished that rig out.... took a couple of hours. 

During the procedure Madi was in a drug induced fog. Conscious but uncaring Madi later mentioned that she her the surgeon say "WAY TO GO PABLO... now get me a towel and some peroxide". Someone got splattered...   :-)  

Next Steps: Her first post-cancer treatment MRI on the 18th, scheduled every three months until year 2-3, then every 6 months until year 5, then annually after that. 

It's Been A Month...

12/7/2014

 
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Madison has managed to go a whole month without having chemo, without surgery, without having proton beam 'therapy' (radiation), or without living out of a suitcase in Boston!

As mentioned Madi's last planned treatment was November 5. Next steps are having her port (access for chemo) and two IVC filters removed, with an MRI scheduled Dec 19. Treatment per say is over, and now she's in cleanup/maintenance mode.  

There's a sense of looming normalcy on the horizon. Madi has signed up for college and is regaining weight/endurance. Next things to look forward to... growing her hair back! 

We crossed paths with a
french bulldog in Boston too many times to count... it was almost too coincidental. "Sasha" was so cute, so sweet and again the reason we found Christopher's Haven. Madi and her mom found a frenchie here locally, and it was love at first site. Madi and her mom adopted "Bailey" two weeks ago. 

Bailey instantly attached herself to Madi, who now has a sense of parenthood. Bailey can't walk past a leaf withing eating it, she likes grabbing small rocks and carrying them around in her mouth, and chasing the cats... which is eventually going to backfire. Bailey also learned that while cute, she actually can't walk on water and now has a healthy fear of the Jacuzzi. We were right there, no danger... but there are some lessons that we mammals need to learn. Next lesson coming for Bailey...
cats have lots of sharp toes.   


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