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Madi's Home!

9/25/2014

Admitted Monday for inpatient chemo, Madison was discharged today at 2 PM and is resting comfortably all things considered. Actually very well.

The next planned treatment is October 13-17, inpatient chemo #7 of 8 in Woodland Hills CA.

Only people that have gone through aggressive chemo regimes know that to simply sustain weight during treatment is a fight. Impressing her oncologist, nurses, and especially her awe inspired parents, Madi actually gained weight this week!

Free Money For Charity From Amazon

9/23/2014

Amazon has a program, http://smile.amazon.com, that gives .5% of all purchases to a charity of your choice. When you go to the Smile.Amazon link, you'll be asked for your ID and PW, then select from the charity of your choice. It's that simple. You still get all of the Amazon deals, no hooks or catches, just free money for charity. We chose Christopher's Haven for obvious reasons... and if you shop on Amazon we hope you do too.

All things considered, Madi is tolerating chemo well enough. Her team at Kaiser Woodland Hills is managing the associated side effects well.

"You Never Know How Strong You Are Until Strong Is The Only Choice You Have" Bob Marley

9/21/2014

Madi starts chemo treatment 6 of 8 tomorrow. While this picture is from an earlier chemo treatment in February, it illustrates a get 'er done approach to doing what one has to do.

A Week Ago Today....

9/19/2014

A week ago today the Jones woke up in Boston, ending the last planned trip for 2014. Five trips in the last ten months, a total of 14 weeks in Boston hotels and short term apartments thus far, it's like being transported from one planet to another.

A heartfelt thanks to Al at MGH for being a wealth of information, a chordoma expert/liaison/guide and our first point of contact at MGH. Thanks to Anne for her dedication and guidance, Christine, Ron, and Kathy for their excellence in the Proton Center, Jesse in Lundar-9, Caitlin and the awesome nurses in ICU, Dr. Choy for his collaboration with Dr. Storch at Kaiser, Tessa's guidance during throat/swallowing therapy, and doctors Hornicek, Schwab, Delaney, Cetrulo, Mullen, and Rocco for their expertise and teamwork treating such a complicated case. Kudos too to Dr. Brara and his team at Kaiser Sunset for all they did in 2013, and for passing the baton to MGH for specialized radiation during surgery called dural plaque, and referring out for Proton Beam Therapy.

The MGH team has passed the treatment baton back to Kaiser, and Madi starts chemo regime 6 of 8 on Monday September 22 under the expertise of Dr. Storch at Kaiser Woodland Hills, her team of experts on the 4th floor, and the awesome nurses in on the 3rd.

When ‘i’ is replaced by ‘we’… even ‘illness’ becomes ‘wellness’. All of this is only made possible by the love, support, and prayers from family and friends. We are truly blessed.

There's No Place Like Home

9/12/2014

The Jones travel home from Boston today. There's no place like home.

There's no place like home.

Signed,
Dorothy and Toto

Ringing the Bell

9/11/2014

As patients finish their last Proton Treatment, it's a tradition to 'ring the bell'. Something the proton graduates are encouraged to say: Ring this bell three times well, its toll will clearly say - "My treatments are done, this course has run, now I'm on my way".

Over the course of the treatments we've seen a lot of people ring them bell, old and young. It's something you have to see... and fight to hold back the tears... especially with it's young children. Knowing what they've been through and seeing the pride they beam that they've completed it, combined with the smile that they finally get to go home. It's very touching.

Today Madi rang the bell, her last day of Proton Beam Therapy, a total of 8 weeks spanning March-September 2014, with surgeries in between.

She is feeling progressively better each day this week, actually spunky while also a tad fatigued a times. During the exit appointment with Nurses yesterday and doctors today, they're ALL extremely pleased and proud of her. Everyone is!

Madi, mom, and dad will leave for home on Friday... one year to the day when pathology came back as chordoma. Madi will resume chemotherapy in Woodland Hills through early November... three more sessions of one-week inpatient chemo treatments, with two weeks at home for recuperation between each. After that, imaging every 3-6 months for five years.

The bond that forms with cancer patients and providers is deep, spanning months of daily sessions and with others, weekly appointments. The nurses in Lundar-9, awesome! The team in the Proton Center, top notch. Every time Madi was called from the waiting area for Proton therapy her parents knew... yea, they got this. There were several very touching goodbyes.

One of the Side Effects of Chemo...

9/9/2014

... is hair falling out. Patients can be victims waking up seeing hair on their pillow, in the shower... or take control. As she did in December, Madi took control.

Rodger shaved Madi's head and she, his. The first couple of passes are very funny. First, the sides shaved with mop-tops. Pictures. Next, Mohawks, more pictures. And finally... Cirque du Soleil, which was absolutely hilarious.

Madi Being Discharged From MGH Today. Again.

9/7/2014

Yesterday Madi's ANC level was 300. Again, it needs to be at a minimum of 1000, ideally 1500 before she can be discharged.

Today her ANC measures 1920. With her white blood cell at 3 (minimum 1), her immune system has kicked back in, and in a big way!

Madi is no longer bound to an IV or IV tree and the nurses are preparing the discharge papers. Pretty soon she'll be headed to her home away from home at Christopher's Haven.

Madi's Immune System Has Improved

9/6/2014

Madi's immune system has improved quite a bit, but not enough to be released from MGH without risk of infection. Yet... it's only Saturday.

When she was admitted Friday, her ANC count was zero. The minimum should be 1000. Today her ANC level was 300, so a step in the right direction. Madi's blood is analyzed daily so they'll know when it's safe for her to be discharged... we're hoping Sunday or Monday so she can resume PBT on Monday.

Boston has spectacular storms. Last week Dad was out walking and it suddenly started pouring rain with massive thunder. Getting close to the apartment dad received a text from Madi, who happened to look out the window as dad was getting soaked to his socks. Her text: "LOL, I just saw you walking".

Tonight, another massive storm swept in. Tethered to her IV tree on wheels, Madi, her mom, dad, and Rodger went to a lounge to get a better view. It was spectacular. We set up a phone to video, and took screen shots from that. John Bradshaw, a friend from Madi and mom's church, just happened to be in Boston and popped by for a brief visit, which was very nice.

Two Steps Forward - Once Step Back

9/5/2014

Madison has been pretty much grounded, self imposed, to avoid risks of infection associated with her immune system being low due to the chemo. Per doctors, if her temperature is gets to 100.4, go straight to the hospital.

It did, she did. Madi was admitted back to MGH today because of a mild fever, an indication of an infection. No telling what or why: The treatment is IV antibiotics and she'll likely stay in the hospital a few days.

All things considered, she feels and looks okay. The fact that her immune system is basically nonexistent means she says on antibiotics until that increases to at least minimum levels.

Updates to follow every day or two.

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