Madi, her mom Colleen and dad Chris traveled to Boston from Simi Valley CA on August 23. Why Boston? Again, we feel that Mass General Hospital (MGH) has the best team on the planet specific to Madison's complex case, and chordoma requires a multidisciplinary team and collaborative excellence.
For Madi's scenario everything and the kitchen sink has been recommended by the medical team to reduce the risks of recurrence. As Madi is one in a million, so is chordoma... sneaky boogers that require aggressive specialized treatment.
Madi was admitted to Mass General Hospital on Monday August 25. Treatment this week is Proton Beam Therapy (PBT) mornings, and chemotherapy evenings. A double whammy for the first five days. Next week (no chemo), PBT Tuesday-Friday and the following, PBT Monday-Wednesday. The plan, leave Boston Friday 9/12 and finish chemo treatments 6, 7 and 8 in Woodland Hills, CA.
There's a phenomenon called anticipatory nausea as explained by Madi's oncologist. When you're standing on the tracks, you know the chemo train's coming and you hear the horn: thoughts and fears of prior experiences are resurfacing, and are real: It's something that can be debilitating and is very real as explained by her doctor.
Fortunately after a fine box of wine with crackers and a can of spray cheese, Dad was feeling much better. Woof... that was close.
All kidding aside, Madi is doing very well to date considering the shotgun approach. The medical team seems to have a firm grasp of managing the side effects of chemo, the nurses are awesome, and Madi has a private room this week. Three more gifts/blessings.
This picture is actually of Madi: Her custom made mask secured to the table, a warm blanket, and I think Monday was country western music day. No hospital gown for Madi, nope! Day 1 she wore a pair of leggings and her "Boston Strong" shirt.
We touched and humbled by the support, love, and prayers. Thank you!
Love,
The Jones'
For Madi's scenario everything and the kitchen sink has been recommended by the medical team to reduce the risks of recurrence. As Madi is one in a million, so is chordoma... sneaky boogers that require aggressive specialized treatment.
Madi was admitted to Mass General Hospital on Monday August 25. Treatment this week is Proton Beam Therapy (PBT) mornings, and chemotherapy evenings. A double whammy for the first five days. Next week (no chemo), PBT Tuesday-Friday and the following, PBT Monday-Wednesday. The plan, leave Boston Friday 9/12 and finish chemo treatments 6, 7 and 8 in Woodland Hills, CA.
There's a phenomenon called anticipatory nausea as explained by Madi's oncologist. When you're standing on the tracks, you know the chemo train's coming and you hear the horn: thoughts and fears of prior experiences are resurfacing, and are real: It's something that can be debilitating and is very real as explained by her doctor.
Fortunately after a fine box of wine with crackers and a can of spray cheese, Dad was feeling much better. Woof... that was close.
All kidding aside, Madi is doing very well to date considering the shotgun approach. The medical team seems to have a firm grasp of managing the side effects of chemo, the nurses are awesome, and Madi has a private room this week. Three more gifts/blessings.
This picture is actually of Madi: Her custom made mask secured to the table, a warm blanket, and I think Monday was country western music day. No hospital gown for Madi, nope! Day 1 she wore a pair of leggings and her "Boston Strong" shirt.
We touched and humbled by the support, love, and prayers. Thank you!
Love,
The Jones'
