Blog Archives

Madi is out of ICU

6/30/2014

Pediatric ICU where the nurse to patient ratio is 1:1. It's a great place when constant and intensive care is required... but it's noisy. Vitals are taken hourly so patients are poked and prodded almost consistently. If a serious alarm goes off for any patient, the monitors in all rooms sound the alarm. One of the nurses said she hears the alarms (in her head) on the train ride home, and for about an hour after she gets home.

The team of doctors and other medical stakeholders meet daily outside patients rooms to discuss each case in detail. Parents are invited to attend and before it concludes, parents are invited to ask questions. The doctor in blue (arms crossed) is 1 of 2 neurosurgeons who operated on Madi... the best chordoma neurosurgeon on the planet.

Madi was released from ICU on June 30. The doctors continue to agree that she is doing very well all things considered. I'm sure Madi is looking forward to the opportunity of some constant sleep, and perhaps some quieter time.

Rounding the Bend

6/29/2014

The doctors say swelling and pain can increase for 2-3 days following surgery. The pain management team has found the balance of keeping her out of extreme pain, and not adversely impacting her breathing.

Today Madi rounds the bend, 3 days post op and swelling has started to diminish slightly. One less IV today, one drain came out as well.

From the 2013 surgery Madi had about a 4" vertical scar on the back of her neck, and a 3" horizontal scar on the right side of her neck. Today the bandages were removed and we were able to see the staples on her neck and stitches in her leg. The incision on the back of her neck appears to be a tad higher and lower than before. The front incision front is impressive. Granted everything was puffy and red, but Madi wanted to see a picture regardless. Keep in mind Madi was prepared to have her jaw split so surgeons could manipulate two pieces of bone to get at tumor remnants if need be, vs. a horseshoe shaped jaw. She also has an impressive set of stitches down her left leg, ~12-14" and equally impressive.

The staples start from where is did before, and continues horizontally across the front of her neck and around to the other side. By her request a picture was taken and Madi took a look. Her eyes got a tad bigger and she said "looks like chokers are coming back in style."

If God only gives us what we can handle, apparently He thinks Madi is a bad-ass...
... she is

Absolute Determination

6/27/2014

On Friday after surgery, Madison was intubated... she could not speak.

She insisted on being heard... period, paragraph. Using sign language she would do the hand gesture we've all done... 'waitress... check please'. On the left, her first attempts, all looked similar. When it was explained "so sorry, can't read it and time for a nap" she would impatiently tap her finger on the dry erase board, and then glare like you were a blind nitwit. 'It's... right.. here'. A couple of hours and a few naps later she finally found the focus: With absolute determination she wrote "Surgery(?). It was explained again "all went great, you did great", running down the bullet items of gifts and blessings. She added the check mark, acknowledged. We asked if there was anything else she wanted to know...

Madi asked for the board and added the heart at the bottom.

Surgery in Boston Complete

6/26/2014

The MGH Chordoma team was able to remove all of the tumor tissue that they could see over the course of the two scheduled surgeries, June 24 & 26. Additionally they were able to accomplish this extremely complex surgery in less intrusive way than planned. Madi will have more side-to-side and up-and-down head movement than expected. Less restricted movement is a blessing and a gift. Add to that… much less surgically invasive, got all of the tumor that they can see, she didn't need a tracheotomy, nor did she sacrifice a major artery. Thank God, and thanks to the awesome team of chordoma specialists at MGH.

Madi has good nerve function and strength in her limbs. The bone graph (from her left leg) went perfectly in to her neck. She has no visible signs of tumor (hence the follow-on radiation in a month or two). She has no scars on her face, did not need a tracheotomy, and didn't have to lose any arteries.

After surgery 1 of 2 as Madi was waking up, she rubbed the back of her head and said "why did they shave the back of my head?" The favorite... "Wait... what... how many ^%$#@ tubes do I have coming out of my arms"?

Thanks for your love, support, and prayers.
The Jones’

Back in Boston for Surgery

6/22/2014

Madi, her mom and dad arrived in Boston midweek (last). With 1-2 pre-surgery appointments each day, there was time to do other things. This picture was taken at Harvard Square on Saturday, literally a short block away from the university. We’d been there several times and and seem to gravitate back… such a neat place.

If you've ever been to Kona you may have seen the rock formations known as Hawaiian graffiti:

If you can’t take Madi to the beach in Southern California… send love and the beach to Madi.

Nicely done!

An angiogram is scheduled for June 23, with surgeries to follow on the 24th and 26th. Given there is tumor presence on C2… that vertebrae needs to be removed (C3 and C4 were removed in August 2013), and she’ll have a bone graft from C1 to C5.

Since C2 is pivotal, Madi’s up-and-down and left-to-right right head movement will be significantly reduced after C2 is removed. She’ll have new battle scars too, which is why plastic surgeons are involved. 3 months after a “plastic close”, we’re told the scars should be close to invisible.

We’ll be updating this webpage weekly during surgery and recuperation in Boston, but will continue to only send email about once a month. Consider bookmarking this page if you would like to stay informed more often than that.

In closing this thread, Madi has the world’s most experienced multidisciplinary chordoma team on the planet, supported by the A-Team and specialists at MGH. The surgery while very complex, is one that MGH does a lot of.

And finally a quote we read recently… “If God only gives us what He thinks we can handle”… apparently He thinks Madi is a bad ass.

She is.

Love,
The Jones family

Home for a Month... Kind of...

6/10/2014

We returned home on May 14. Our good friend Windi picked us up at the airport, which was wonderful. To say were homesick would be the understatement of the year, and Windi was a sight for sore eyes.

As mentioned in an earlier post, Madison's throat was quite sore so it was decision time: we had campsite reservations at the beach that weekend, or do we stay home and enjoy the quiet. The solution... if you have to have a very sore throat somewhere, might as well have it at the beach! It was an absolutely beautiful weekend.

Madi's birthday was the next week so a bunch of friends gathered for Sushi... our girl is 19.

Madi's mom Colleen surprised her with a cruise for her birthday. She and Rodger left last Thursday and returned Sunday June 8. Carnival raised the bar, treating Madi and Rodger like celebrities.

As you can see in the pictures Madi looked healthy and in the usual cruise tradition and consistent with maritime law, she packed on a few pounds... a happy thing given she lost a few during proton radiation session 1.

Carnival raised the bar. Private dining table, a window table no less... all kinds of treats in the room, bathrobes to bring home, a no-charge shore excursion, a stack of no-charge pictures, and a private tour of the bridge with the ships officers.

As you can see in the picture, Commodore Mantor offering his guidance to the young navigation officer, and Madi clearly impressed that they narrowly managed to avoid a disaster. As you can see in her expression phewwww... that was close.

All kidding aside, Madi and Rodger had a blast. The cruise line treated Madi and Rodger like royalty. Kudos to Madi's mom Colleen for arraigning such a treat!

As mentioned on another tab at this site, all donations to the fund are used explicitly for medical related travel and medical deductibles/bills. All excursions and activities are important to maintain spirits, so the family covers them out-of-pocket and not from gifts/donations.

We return to Boston next week for a series of doctor appointments, with surgery 1 and surgery 2 scheduled for June 24 and 26 (the second surgery was moved closer to the first as expected). After that we'll stay in Boston for a week or two for 'rehab' which simply means staying close to the medical team in the unlikely event of any complications.

~4-5 weeks after surgery 2, we return to Boston for round 2 of Proton Radiation, 11-15 treatments.

Thank you all for your love, prayers, and support. We are blessed to have you in our lives.
The Jones'