We're in

Since finding out that Rainbow is terrifyingly underdefended by his own immune system we've been battling to find a way to pay for his treatment (insurance is not interested, awesome). I don't know how many hours I've spend on the phone, filling out paper work, back on the phone, researching Primary Immune Deficiency websites... you name it, I've done it. I've been a woman possessed.

Yesterday I got an email from the infusion nurse at Rainbow's Immunologist's office

I think we've come up with a solution
Call our research director at ###-####

I called
Voicemail

I thought my head was going to explode. I cranked my ringer as high as it would go, shoved my phone in my pocket, then proceeded to take it out and look at it every 30 seconds... because, you know, maybe I missed the call.

5pm came and went, no call

That's ok, they call me after 5 fairly frequently...

5:30, holy crap I'm going to have to wait until tomorrow?!

6:00, resignation...

6:30, my phone rings

It was her. It was her giving me hope. It was her telling me that if we can get Raz stabilized for three months on IV infusions she can enroll him in a clinical trial that would give him free meds for 6 months. Six months is a long time. Six months is a lot of money and this means he could start getting protection soon, really soon.

"You don't have to make a decision now," She said, "I'm going to email you the Informed Consent. Take your time and read it and I will answer any questions you have."

In case you're wondering "Informed Consent" is a pseudonym for "Terrifying document outlining every possible thing that could go wrong, no matter how remote, and detailing every agonizing time your child will have to be stuck with a needle to put stuff in or pull stuff out."

I rode a high of relief through dinner and started reading the document of terror while Rainbow played in his bubble bath.

I had to remind myself roughly three-thousand times that this is something he must have. This isn't a medication he needs to improve his quality of life or diminish pain this is a medication he needs to stay alive.

I've read A LOT about gammaglobulin replacement in the past few weeks. Every medication comes with the same risks, the same list of possibilities. This list was no different but the beast I had been fighting, my primary worry "how are we going to get him what he needs?" had sustained a wollop that would take it down for a good 6 months.

Without a monster to conquer I had to face the reality that, likely for the rest of his life, my son will need a blood product to survive. A blood product that has to be introduced to his little body through needles. A blood product that must be constantly monitored through blood draws, at some points on back to back to back days.

Hubby is glad for the caution. He's glad they will be obsessively checking his blood over and over and over and over, making sure he is ok, making sure his body is tolerating the foreign presence, making sure he doesn't have an infection.

I'm just afraid for my child.

Repeat the mantra "he needs this to survive"

"he needs this to survive"

"he needs this to survive"

I emailed the director this morning

We're in, we're terrified and worried but we're in.



Until next time...