Bloodwork #1

Today began blood work 1 of 9 for Fawkes in the next 6 months. Clearly, my subconscious was anxious because last night I had a dream both Fawkes and I had our molars pulled out at the dentist. Losing teeth is a classic dream dictionary troupe about losing control. That's certainly how I'm going to feel starting these next 6 months.

We are desperately hoping my son gets accepted to one of the three spots available for an event I can't fully disclose until it's finished, in Philly. The Baltimore location where we normally do our CF appointments is not participating, so we are making the trip to Philadelphia. We plan to make some fun on the Rocky steps and the Liberty bell, but each appointment will be 6-8 hours long, with blood work, and other assorted poking and prodding of my toddler. There's a requirement that he not have respiratory infections or be on antibiotics 28 days before day 1. If we don't get in, we have to wait until medication is approved by FDA which could be over a year away. My son needs this potentially life-lengthening drug to slow the progression of his terminal disease. The stakes are high; we are not attending any birthday parties for awhile.

A CF mom blogger I follow gave a metaphor that she went into "Roly-Poly" mode recently, where she said she did the equivalent of balling up and ignored anything that wasn't critical to maintain day-to-day. She was overwhelmed by the procedures her CF son was enduring. If she was in roly-poly mode for a few weeks, then this blog is evidence I've been in more of an Arctic Woolly Bear Moth mode. After three years, I'm finally ready to start writing things on a blog, much like that moth that spends around seven years to build up enough resources to finally pupate into the adult moth. Look them up, they're seriously incredible. I'm not quite sure if it's narrative, educational, or cathartic, but I have so many thoughts and things to say about CF to try and explain, so let's begin.

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Prepping

We went to his Quarterly CF appointment without a hitch. Then, Hudson got the email we've been waiting for; we could sign up for a screening appointment. The drug is approved for 6 and up, and we wanted to get Fawkes on it as soon as we could in his lifetime. If we waited for FDA approval, it could be as late as his 5th birthday. We believe that science is the only way to combat his disease. Reading the consent form was a terrifying venture. As a mother, what am I signing him up for. So much testing, so much blood work, so many appointments. Eight visits over 5 months, but front loaded. 4 visits in the first month! Our normal JHU in Baltimore wasn't participating, so we had to go to CHOP in Philly. In the consent form, you see all the risks of the trial. It was like one of those medicine commercials where it could cause this or that.

The scariest thing is risk of developing cataracts. So what am I doing, trading his sight for years of life?

You can correct cataracts right?

Reward far outweighs the risk; we have to do it.  While we were discussing the paperwork, Fawkes decided to take the dishwasher rack and push it like a train. It stopped, his momentum didn’t and well, we landed in the ER

He developed a fever, think it was from flu shot but took him to doctor anyway since he had the suture glue.  I had to do it anyway for his annual bloodwork for CF. I had since decided to make that a separate appointment at our pediatrician because it's too long at CF appointments in the hospital and I can run him up to our doctor and get in and out. They won't do labs without a visit. So I took my JHU orders and did the whole 2 birds things. I knew ahead of time he would not like it so I ordered a companion jewel book to one he and I sing every night before bad. I wrapped it to distract him. It didn’t really help. It's bloodwork. I don't even like it.

For the screening I had to Request paperwork. Which meant I had to sign a release for JHU to send it to CHOP. We saw genotyping results for the first time. We knew the outcome, double delf508, but seeing it on paper still hurts your heart.

In order to get in the trial you have to do a screening and make sure certain things are within acceptable limits. The biggest thing is he cannot be on antibiotics or sick 30 days before day 1. He had just been on antibiotics 2 times in a row; how was this going to be possible. No birthday parties, no indoor playgrounds, limited interaction with kids and people, bubble time. In the midst of all that, it's the holidays; how will this can we keep up with work and life and this trial.


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