Happy to have his favorite human home
50 Shades of Gray
As mentioned in an earlier post Madi arrived home to Southern California on Tuesday July 22. Wooo hooo! Prior to leaving Boston, all imaging and scans required for the next leg of her journey were completed for the final 12 sessions of Proton radiation at MGH in Boston. The last round of proton radiation is scheduled to start August 25. Proton radiation is M-F, so another 3 weeks in Boston.
The proton radiation machine is basically a 3 story building. The walls, floor, and ceiling are solid concrete... 6 feet thick. The lid of the machine weighs 20 tons. If there is a technical anomaly and the unit must be shut down for repairs, it takes 12 hours to boot. A bit complex, yes. The benefits of proton radiation are particularly beneficial for stubborn tumors. If you picture a walnut being thicker in the center yet thin along the edges, traditional radiation would zap the whole area and surrounding tissue with equal intensity. Proton therapy is an amazing technology! It offers higher doses in the core a tumor, but a lower where the tumor is thinner. Along the edges, very little... just tickling the outside of a tumor. Another amazing aspect is that proton is 3D, meaning the radiation intensity bakes the tumor at it's core, but starts at the front of the tumor and stops at the rear. No residual radiation left, right, front, or rear.
Madi is getting what's referred to as 'pencil beam scanning proton radiation'... the holy grail and next generation of proton therapy per her radiation oncologist, also head of the Center. Proton radiation intensity is measured in Gy, commonly referred to as "gray". Madi is getting 50 Gye, pronounced 50 Gray. Giving the varying intensity given the exact shape of a tumor.. 50 shades of Gray. They should make a movie... catchy title. She'll get 22 more Gye later in the year, a sequel at least for her.
A reminder of the blessings and gifts throughout this journey:
Madi is Home From Boston for a Month!
As per usual her trusted companion, part-time nurse and security adviser stayed at her feet... sleeping all night with one eye open.
Two Steps Forward, One Step Sideways
We made arrangements to have Madison's tumor broken down to the DNA level in the event of a recurrence. The purpose... have the abundance of sarcoma, leukemia drugs etc. tested to determine how they would adversely impact the DNA of Madi's tumors. The bad news... there isn't enough tissue with viable DNA to complete testing.
Picture two cocktail straws going through marshmallows: The straws, vertebral arteries and the marshmallows are tumors. One of the gifts/blessings is that Madison still has both vertebral arteries. Proton and chemo as suggested by MGH, did make surgery less invasive. Absent proton/chemotherapy, there would still be marshmallow cells on the straws.
Unfortunately DNA sequencing couldn't pan out, which speaks to the small amount of viable tumor remaining... good news of sorts news: Thing-1 and Thing-2 (tumor remnants) had their asses kicked.
Another Milestone !
Madison had 2 doctor appointments today, one each for her neck and leg. The surgeon who harvested most of her fibula said her leg looks great! (Madi had to decide which leg to choose....the choice for me was simple... her moms :)
The other doctor looked at her throat through her nose. As expected there is still quite a bit of swelling. As the weeks/months go by, each day should be a tad easier to swallow.
Monday night Dad and Angela took Madi out for sushi, one of her favorite meals. We were impressed how much she ate given what her throat must have felt like.
On Tuesday Madi had a throat study with Tessa (mentioned in a prior thread): Tessa was "extremely impressed" and remarked that Madi's progress was "amazing". Again, the swelling will continue go down over time but she's progressing in the right direction!
Another milestone today... the staples in her neck were removed. Again, it's an impressive incision in the front of her neck with about 50 staples. I was trying to convince Madison to keep the staples and make a bracelet, how cool would that be?! It turns out that they had to cut each in half to wiggle them out. Dang!
Given Madison has been doing extremely well, we decided either mom or Dad/Angela would travel home to reduce hotel expenses during this leg of the journey. Mom, Rodger, and Madi will travel back on July 22. Chris and Angela arrived home in Simi Valley at 2 AM this morning.
I think there was a movie star sitting behind Chris on the plane last night. The paparazzi kept snapping pictures... something was definitely up.
More to come in the next couple of days, stay tuned.
"Doing Fantastic Considering..."
Madison has four sessions of physical therapy weekly, two each for her leg and for swallowing. The throat therapist Tessa is a very charming woman from South Africa who did a recap of sorts. "Considering you had surgery on the back of your neck, then a couple of days later we (MGH) removed bone from your leg and inserted it in the front of your neck, opened your belly for the feeding tube, took out tumor and replaced all the hardware... you're really doing fantastic". Madi replied back that Mass has great doctors, the best! Tessa said "we met 8 days ago and you could hardly speak and couldn't swallow. Look at you now... your voice sounds good, you're eating potato chips, macaroni and cheese, drinking smoothies... you are really doing fantastic considering what we did to you".
Madi and Rodger took a cab over to Quincy Market, an outdoor mall a couple of miles away from the apartment. After a bit of slow strolling/shopping and a light lunch, they headed back. It was the second time Madi had left the apartment without the wheelchair.
The current plan is to wrap up physical therapy and doctor appointments next week, and return home to SoCal on July 22. There isn't yet a set date to return for the last round (11-15 sessions) of proton radiation, but it's estimated to start as early as July 28 or August 4. It all depends on how well the incisions are healing.
Madi had physical therapy early this week. The physical therapist said Madi was showing "remarkable progress" and was very pleased.
She is clearly working very hard... today continued with prescribed stretching, exercises, the longest walk since she was discharged. Confidence is high that each day she will exceed the expectations of her doctors and physical therapists. The next PT appointment is Friday, July 11.... she expects good things of herself.
And to quote Bob Marley... "You never know how strong you are until being strong is the only choice you have".
July 7 Update
On July 5th Madison returned to her home away from home with little endurance, a wheelchair, a walker, and a cane. She needed the walker for stability... the wheelchair was for transportation, graduating to the cane would be the next milestone.
On the 6th she discarded the walker. Rodger took her for a stroll in the wheelchair. Madi decided she would walk across the bridge over Charles Street. Rodger then pushed her along the Charles river for some fresh air.
On the 7th another stroll down the Charles. Madi again decided she would walk across the bridge, then sit in the wheelchair for an afternoon stroll. On the way back, she decided she would make the trek across the bridge again, both ramps on both sides of the street... and then walked back to the apartment.
Take a last Look
As mentioned Madi's room was on the 18th floor at MGH and had an great view of the Charles River and the fireworks. Take a last look... Madi was discharged from the hospital today, another major milestone!
The ride to Christopher's Haven was uneventful. Their mission statement: "A Home for Kids with Cancer When Cancer Hits Home". It's an outstanding organization that is similar to the Hope Lodge, but for kids and their families, but on a much smaller scale... for now.
The brown building (below the chopper blade) is where Christopher's Haven is: 7 individual apartments that occupies half of the second floor. The ride there was by wheelchair, directly across the street from MGH (and no, not by chopper).
The plan is to remain in Boston for about two more weeks. Upcoming goals are stretching, strengthening, endurance, avoiding infection, and gaining weight. Madi will have doctor appointments daily for the first week, with the light at the end of the tunnel: each medical team signs off the second week, and Madi can ideally return home to California for 2-3 weeks. In late July or early August she'll return to MGH for the final round of proton radiation, either 11 or 15 sessions (TBD, which are M-F only).
The common theme from doctors, nurses, and physical therapists include phrases such as "Madi is very tough, determined, doing excellent, working very hard, outstanding progress, we're all very pleased, etc". Madi continues this leg of her journey with absolute determination and conviction to beat chordoma.
Happy Independence Day!
Madi, her boyfriend Rodger, her mom Colleen, and Madi's hospital roommate watched the July 3rd fireworks from the hospital room.
Rodger took a great picture! The dots in the water are boats, which shows the grand scale of fireworks here in Boston.
Madi may be discharged from the hospital as early as Saturday July 5.
Just a few short days ago Madi was having to fight just to be able sit up on the side of the bed without help.
The next steps, literally inching her way to the bathroom with a walker.
Madi has now kicked the walker aside, and relies on only a cane.
More July information and pictures at this link