More results and Senegal
We sit in the waiting room, smiling and talking calmly not allowing any anxiety to surface, grateful that my friends are keeping Mujasi while we meet with the doctors for the results.
A nurse approaches us, asking if we are - she stumbles over the name - Mujasi's family. She doesn't introduce herself but asks how long we are available for today. I tell her as long as we need to be, even though Tess intends to get us on yet another red-eye to NYC so we can then take a red-eye to Senegal.
She begins to launch into her speech about Jasi's appointment tomorrow for his shunt and first chemo treatment when Tessie & I both raise our hands in protest. We do not even know the results of yesterday's tests yet. I ask her if she knows something we don't know, and she backs down, and backs out of the room.
I consider the oncology team well warned.
We are shown into the same examine room that we were in a couple weeks ago, and get the GREAT news that Jasi's LCH is only located in his jaw bones and gums. It has not spread to the pituitary gland or any other bone in his body... yet.
We sit with Dr. Thampi, Dr. Tsai (Jasi's dentist who has been one of the most instrumental in paving this hard road for us to navigate), and Jessica, the social worker, and hear them say chemo is the only option, the only cure they know of.
They explain that they are not sure whether to even call LCH a cancer, even though it acts like a cancer in the rapid reproduction of the cell or hormone that thinks it is being attacked, and even though they treat it like a cancer. But because some LCH can be eliminated by merely removing that part of the bone affected, and over 80% of the time it does not spread.
Jasi's is on the bones of his jaws, which makes surgery not an option.
Jasi's is close to the brain, which makes the risk of spreading to the brain 3 times higher.
Tess informs them we do not intend to jump into chemotherapy, much to their horror. Dr. Thampi excuses herself to find the "experienced" doctor, an older white male.
He repeats what we've been told and goes further to explain that because LCH is such a rare disease striking only 1 in 200,000 children, the national and international community of health care providers is a very limited and small community that shares problems as well as solutions, from here to Baltimore, to Brazil and India.
And a very experienced and successful medical community: i.e. their children rarely die. (We don't know enough to ask & should have asked, do they go on to live normal, healthy, disease & drug-complication-free lives?)
He expresses his admiration & support of Tessie's desire to get all the facts and explore the alternatives, but adds his urgent plea along with the others that she not discount chemo - and soon.
We try to pin them down on the timeline of the consequences of not acting with the western med protocol, but they can only tell us what they've seen: the kind of bone LCH he has usually travels to the pituitary gland first, or maybe other bones.
When Tess mentions turning over every stone to find alternatives, putting off chemo for 6 months or a year, they cannot lift their jaws off the ground. They all express their opinion that waiting a week, maybe two weeks is the only acceptable time-frame, and that is just barely.
We end up with a plan to send John Hopkins the tests results for a second opinion, to reconvene on the 9th of August over the phone or in person, and to decide then the next steps.
Tessie's private plan is to go to Senegal to reconnect with healers she knows there; to consider going to Brazil to that healer; to maybe check out the LCH clinics in India (but later she discovers they are not alternative but also use traditional western medicine); to find healers in Atlanta or near Atlanta that she trusts.
And to try to make a holistic plan of action to treat Jasi's LCH by supporting his body to heal itself.
I am terrified for her: no mother and no mother's child, should have to be faced with these horrific choices, let alone this terrible disease.
A nurse approaches us, asking if we are - she stumbles over the name - Mujasi's family. She doesn't introduce herself but asks how long we are available for today. I tell her as long as we need to be, even though Tess intends to get us on yet another red-eye to NYC so we can then take a red-eye to Senegal.
She begins to launch into her speech about Jasi's appointment tomorrow for his shunt and first chemo treatment when Tessie & I both raise our hands in protest. We do not even know the results of yesterday's tests yet. I ask her if she knows something we don't know, and she backs down, and backs out of the room.
I consider the oncology team well warned.
We are shown into the same examine room that we were in a couple weeks ago, and get the GREAT news that Jasi's LCH is only located in his jaw bones and gums. It has not spread to the pituitary gland or any other bone in his body... yet.
We sit with Dr. Thampi, Dr. Tsai (Jasi's dentist who has been one of the most instrumental in paving this hard road for us to navigate), and Jessica, the social worker, and hear them say chemo is the only option, the only cure they know of.
They explain that they are not sure whether to even call LCH a cancer, even though it acts like a cancer in the rapid reproduction of the cell or hormone that thinks it is being attacked, and even though they treat it like a cancer. But because some LCH can be eliminated by merely removing that part of the bone affected, and over 80% of the time it does not spread.
Jasi's is on the bones of his jaws, which makes surgery not an option.
Jasi's is close to the brain, which makes the risk of spreading to the brain 3 times higher.
Tess informs them we do not intend to jump into chemotherapy, much to their horror. Dr. Thampi excuses herself to find the "experienced" doctor, an older white male.
He repeats what we've been told and goes further to explain that because LCH is such a rare disease striking only 1 in 200,000 children, the national and international community of health care providers is a very limited and small community that shares problems as well as solutions, from here to Baltimore, to Brazil and India.
And a very experienced and successful medical community: i.e. their children rarely die. (We don't know enough to ask & should have asked, do they go on to live normal, healthy, disease & drug-complication-free lives?)
He expresses his admiration & support of Tessie's desire to get all the facts and explore the alternatives, but adds his urgent plea along with the others that she not discount chemo - and soon.
We try to pin them down on the timeline of the consequences of not acting with the western med protocol, but they can only tell us what they've seen: the kind of bone LCH he has usually travels to the pituitary gland first, or maybe other bones.
When Tess mentions turning over every stone to find alternatives, putting off chemo for 6 months or a year, they cannot lift their jaws off the ground. They all express their opinion that waiting a week, maybe two weeks is the only acceptable time-frame, and that is just barely.
We end up with a plan to send John Hopkins the tests results for a second opinion, to reconvene on the 9th of August over the phone or in person, and to decide then the next steps.
Tessie's private plan is to go to Senegal to reconnect with healers she knows there; to consider going to Brazil to that healer; to maybe check out the LCH clinics in India (but later she discovers they are not alternative but also use traditional western medicine); to find healers in Atlanta or near Atlanta that she trusts.
And to try to make a holistic plan of action to treat Jasi's LCH by supporting his body to heal itself.
I am terrified for her: no mother and no mother's child, should have to be faced with these horrific choices, let alone this terrible disease.
posted by Xan @ 6:36 PM
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