When your child faces a life-threatening illness ... to be continued
What to do when your darling beloved daughter is facing her cherished baby boy's life-threatening illness?
We are once again sprawled out on the amazingly beautiful sandy beaches of the Kona side of Hawaii. Jasi & I have spent several hours in and out of the warm Pacific Ocean and now he is asleep on the sheet.
Tessie has been making phone calls all morning - all weekend really, since we got the diagnosis. We have an appointment Tuesday the 24th for an MRI and full body xrays, which will tell us if the disease has spread beyond his mouth; then Wednesday the 25th for the results; and Thursday the 26th they want to put in a shunt for Chemo and other drugs - for a year.
We are casting certainty lines out to the universe: certain it has not spread; certain it is contained. The survival and remission rate is extremely good, like over 90% .... with chemotherapy and steroids - with a 20% remission rate at the end of a year.
A couple of weeks ago, before LCH, my daughter and I talked about her father's baby who was born with a terrible invasive cancer and has been suffering through chemotherapy from birth until now, 9 months old. Her survival chances are nil beyond 4 or 5 years old, WITH chemo, etc.
At the time, I expressed my horror at subjecting a child, an infant, a life form unable to make choices for herself, unable to define what is happening to her, what is being done to her, let alone let anyone know how she feels about it - subjecting her to chemo.
My daughter looked funny, and said she understood wanting to try to keep the child alive - even if only for 4 more years, her life's expectancy at this date.
Now that Jasi is faced with chemo, she is adamant she will not have to go that route but will find another way to cure him.
I listen to the options she is considering with my own silent horror, misgivings, objections, struggling to keep them out of my face, my words, my silent language as I through everything I have into supporting my daughter, who is facing her child's life-threatening illness.
I want to hear her talk about his immediate environment: the crazy hours he/she keeps, the amount of restaurant food he/she consumes, the frequent exceptions of sweets, sugars, dairy; exposing him/her to pesticides at home, radiation from flying - I want her to examine these things, rectify these close, real things before flying off to embrace more "new age" things.
As Jasi sleeps, she is quietly whispering into her phone, holding her head so her mouth points away as her eyes never leave his sleeping face.
When she finally ends that call, she turns to me with anxious hope skirting her face as her brow furrows and softly but excitedly tells me she was able to contact the amazing healer that assisted her before with another friend's healing - a friend who died in her home.
I resist with all my might to point out that 'failure', i.e. the death, of her friend, to pick that scab from when she told me he died because he was too stubborn to listen to the healer and follow his direction. i.e. this "amazing" healer would have cured her friend of pancreatic cancer if only he had been willing to follow the healer's orders.
This time, the healer is diagnosing Jasi over the phone, blaming his liver for this illness, talking about eliminating stress from Jasi's liver, detoxing the liver by putting him on a carrot juice fast for a week.
I try not to allow my astonishment which could turn rapidly into scoffing skepticism and loud gawfing: eliminate stress to the liver by stressing out every other organ and part of a growing child's body? a 3 year old & carrot juice for a week??? puleeze...
My accepting nods encourage her to continue. She has spoken with an old boyfriend who is a NYC doc and he tells her of a friend who treated and cured people with cancer with vitamin B17.
This feels better to me and I ask hopefully if that is one of the B's in nutritional yeast, which I feed Jasi alot of. It is not.
She tells me her ex says this fellow was so successful curing cancer, he was murdered. Suspected by western medical & drug honchos. I know such things are possible and even probable but instead of asking for proof, I ask what is the source of B17? We don't know.
Okay, carrot juice and B17. Chemotherapy and steroids.
We begin to talk about carrot juice fasts again. This healer Tessie has spoken with believes Jasi's problems are allergies, so the fast will identify the allergies, as she purifies him, detoxes his liver on the juice fast, and then one-by-one, adds different foods.
I suggest that perhaps, if it does come to deciding to severely limit his diet in this way, that brown rice is a much better choice: he loves it, it is filling, nutritional, and most likely not causing allergies, etc. But I am so concerned about the minimum daily nutrition a child's body needs for developing.
I try not to allow the sarcasm into my voice when I mention stress and making a 3 year old survive on nothing but carrot juice - a 3 year old whose body is growing and developing every moment of every day, not to mention a three year old who eats heartily many more times then three per day!
Gloria agrees, saying Jasi is a child who likes to eat. When I don't see the expected sarcasm in her voice - like for patty's sake, what child doesn't like to eat - I try to see into her to detect criticism on my grandchild's love of food, but Gloria is not a womon to criticize.
I wonder to myself about the attitude that food is not meant to be deeply enjoyed and valued! hmmm