Sunday, December 10, 2017

Some good news... kinda...

This was the week of many doctor's appointments.

Endocrinologist, endocrine oncologist, and advanced cancer care team (surgeon, radiologist, endocrine oncologist, and advanced cancer care specialist).

Only one of those appointments wasn't in Boston.

4 nodules, most likely cancerous, clustered together in Chris's neck. Largest is 2.20 cm by 1.92 cm. Appear fully encapsulated. Nodule in lung not suspected to be cancerous.

So... we're going back to the rock star surgeon. In Boston.

Then getting some form of radiation. In Boston.

All of the cancer care will be in Boston. They're used to treating zebras, and the Massachusetts General Hospital and Harvard Medical School want tissue samples of Chris's cancer because they're trying to develop Hurthle cell carcinoma cell lines. Because they don't have enough, and his seems to be... vigorous.

Great. Wonderful. One frickin problem.

That's in MA. We live in NH.

Our current plan would make us go through several hoops because it automatically denies all treatment outside of NH. Imagine delays. Lots and lots of delays.

There is ONE medical plan we can buy ourselves that will cover all of the providers in MA. It's the top of the line individual plan. It can only be bought direct. Not through the exchange. So no subsidies.

It's $1,869 a month.

The way we figure it is unless it costs $20K+ more over the year than a comparable plan with a similarly low deductible and out of pocket max, it's worth it. Because delays and not being able to work. But ouch...

Also, that much travel to and from Boston with a disabled cancer patient (immunocompromised and can't walk that far, public transit is a firm NO)... the vehicle difficulties need to be fixed. Like now.

He also needs a wheelchair for getting around the house (or the in-law apartment) by himself because radiation means I can't spend extended periods of time around him taking care of him. Oh, and we're gonna need to get another bed so I have somewhere to sleep, and the bed we're currently sleeping on is already broken...

And Christopher isn't home yet because we're still battling CPS...

And we need to make the deductible on the new plan and the out of pocket max pretty much immediately, because no more delays...

We're just frickin spent on every level, trying to do all of these things at once.

But yay, not dying of cancer? Treatment? Oh and the endocrinologist thinks he'll be able to get off of insulin soon so there's that... There is some good news and forward momentum.

We're just so goddamn broke and exhausted, paying the bills, making CPS happy, and doing all of this at once.

And it's not just me, this is what Chris wrote about it:

"Right now, I am on my knees... i just finished praying for help.... and now, Im begging for it...
The fact is folks... for everyone who has ever thought of helping us survive... or for those of you who have helped, or for those who might be able to now... we're in it over our heads at this point.
I made it a year working with this cancer, and all the other issues, but I haven't been able to work since my last hospitalization, when I nearly went into into a coma in july, and since then have paid more than $40,000 in out of pocket expenses... just to keep me alive.
Now, some 24 year old social justice crusading social worker has decided that my wife can't handle taking care of me, and our son.... and we desperately need your help to get him back.
He's safe with my aunt Helen for now, but she can't take care of him forever, and unless we pay their price and play their tune, the state is going to put my hyperactive speech delayed autistic son in the system... and that CAN'T happen.
I'm literally bed ridden... I have been on the verge of being rushed to the hospal for weeks... Honestly the only reason I am able to be at home at all is because Im on 24 hour oxygen... and with the spinal injuri... I'm basically useless... Honestly... I'm a burden right now.... and it's killing me.
My wife has had to take care of everything on her own since my spinal injury... and she was doing OK... not great, but ok... then I suddenly got far worse and have been unable to work since July... and she has been drowning.
Our friend Sarah Caito is temporarily living with us to help... in fact, she was on her way here to help us before this cps thing happened... and shes been great, and shes going to help as long as she can... in fact, she took an extended vacation frommwork to come help us, and when that wasnt enough, and they gave her trouble about the time, she actually quit her job, and is now living off her savings and back pay... to help us get pur son back...
... honestly, I cannot tell you how amazed and hu,bled Ic am, at all the people who care aboutnus, and are trying to help in every eay they can. Its... I have no words, except to say thank you.... I appreciate it.
...Sonwe have great help... what we need right now is money.
The CPS agent told us that cleaning cleaning and treating for mold wasn't enough, that we had to throw everything away, and rip up all the carpets. Then, a week later she came back and said that now.... though the boy has plenty of clean clothes, toys, furniture, bedding etc.. now, we have almost nothing left in the house... because she made us throw it all away.... and that she feels it's not a "proper and safe environment".
It cost us $3,000 so far to clean and treat all the floors, carpets, etc... and to throw everything away, and to do do all do all the other things asked of us... and we have have nothing left, in fact we have Andrew in in the hole.
We have now spent every bit of money we had, in trying to get the boy back.
At this point we have had to throw put something like $20,000 in household goods, furniture, clothing... literally anything that could remotely hold on to mold, mildew, or unpleasant odors... Several thousand pounds worth, in multiple large trailermloads... all gone, at the demand of some 25 year old idiot who has never had a child, but knows what's best for ours... because after all, the state says so...
We're now about $2,000 in the hole, and that's just on November. We need another $8,000 to pay the basic December bills, and meet CPSs ridiculous demands so we can get our son back.
... and pay my medical bills, and insurance premiums, and the prescriptions they are still refusing to cover.
In theory we are supposed to be reimbursed well over $20,000 in out of pocket expenses from from the insurance company... eventually, after they dispute afterllndndnd disallow everything several times... I honestly don't think we're going to see a dime.
A friend of ours owes us more more than enough money to pay for andll of this... and and she should have it to pay us back soon... but nowt soon enpugh. Not sure exactly when. May be mid december, may not be until January... and we can't survive that long.
On 7th, I'm due at Mass general for at consult with the special treatment advanced endocrine cancer care team there, to decide on the next phase of my treatment. My endocrine oncologist believes that most likely I will go through three courses of radiation, over six weeks, hopefully beginning the week adtdvancedfter the care team meeting... but on the first of the year, our deductible and max out of pocket all reset... so that's another I think $8,000 we adtdvancedfter go thing tod need, just so I thought can get my radiation.
Then there may still be more surgery afterward... we're not sure.
If it's spread to my lung... the imagery was uncertain, there there was there was a 5mm nodule in my lower left lung, but it may be from something else...
Honestly, if it's in my lung... unless they can act fast, its not good.mif there is any more delay, I'm probably not going to make it... at that point there's not much there's can do... but I need to go forward and plan on surviving because my wife and son need me...
... I hate doing this... but nothing else matters... I can't let my something be destroyed by the system because some 24 year old teacher can't tell the difference between a boy playing before he got on the buss and getting and little dirty, and abuse abuse and neglect...
Or for any reason and all...
I can't afford pride... or shame, or anything anything other than this...
If you can help me save our son.... I'm begging you.... please help.
If there's anything you might want to pay me to write, or design, or any services I can perform for you from bed... I'm up for you whatever I am capable of doing.
If someone someone needs someone needs an indentured info sec expert... or an experienced trainer and educator... anything and rent all... I will donit.
No matter what it takes... for my son, for my family... I will do do it...
My wife Melody Byrne can handle all the details if you have any help you can give. We have multiple donation and payment options, and are happy to work with you no matter what it takes. If If you can help, please message her directly, andll she will work with you to tomake to make it happen.
.... and now two that I've managed to write all this, I desperately need to collapse and pass out.
Thank you.... for everything..."

So that's where we are.

I've still got a GoFundMe going BUT it takes days to clear so if it is at all possible to use PayPal (chris@chrisbyrne,com) or Messenger Payments that is much faster.

Thanks all,