The Disclaimer: Maybe CHOP won’t find anything at all

I already know finding nothing is a possibility (having lived through so many medical tests that have led to dead ends in the past),

but it’s still always heartbreaking to be reminded, “we may not find anything at all”. Trust me, I know…I understand. I’m sure they’ve been yelled at by disappointed parents in the past, which is why they say something, but I’m not your typical parent–I’m a seasoned pro at medical testing disappointment.

For today, I would just like to spend a moment in my little fantasy land…a land where they do find the answer…a land where everything is ok for me and my son. Just for a moment.

The cold reality of a dead end will probably slam its way of its own accord in a few weeks.

This moment, is for me πŸ™‚

Begin forwarded message:

From: Teddy
Date: January 25, 2012 5:04:53 AM PST
To: RG
Cc: AT
Subject: Re: Shipping blood to Philadelphia


I really appreciate this, and I understand completely that we may not find anything at this time–I’m just very grateful for the effort.

There is a lab in the Netherlands that Dr. S was talking with a few weeks ago, that offers genetic testing for different things, but we weren’t sure how to proceed so we didn’t order any of the tests.

Do you think doing any of their tests might compliment what you’re doing, or should we just wait and see what might be the next step? If you have any suggestions what tests might be helpful, I can send blood to that lab at the same time as well (University of Utrecht immunology lab in the Netherlands). We just don’t know enough about all of this to even figure out which tests I would try…

When my Uncle was still alive, who had this disorder as well, he used to remind me in my darker moments to be optimistic, that medicine keeps getting better and better…when he first got really sick, doctors didn’t even know t-cells existed, let alone that someone could have a deficiency in them. One day medicine will get there, he used to say πŸ™‚

(That reminds me, before I forget–I think there might be tissue samples saved of my uncle in a lab in Vancouver before he was cremated–would you like me to see if I can track those tissue samples down? (Would that help at all?))
I completely understand that these tests are a long shot, but we will learn something new about my case either way. I’m hoping that we will at least be able to point to a spot, ‘deficiency on chromosome 3’, because even if we can’t do anything about it now, at least we will know the deficiency, so when medicine is able to do something about it, my son can be first in line to have the treatment for it–

So even if all these tests come back negative, your tests are still good, because we know we can cross those disorders off the list. Every test you do, will help my son and I–no matter what the outcome is πŸ™‚

(And while we’re trying to get the answer, regular IVIG and possibly even Neupogen shots might help keep us going, even if doctors can’t cure us yet–)

Thank you again for everything. I’m sure you sense how much I’ve been through over the years, and I really appreciate that you’re willing to try. You are a rare find in a case like mine. Most people don’t even take a moment to think about my case, let alone put any effort into phone calls or research. You are a golden find πŸ™‚


On Jan 24, 2012, at 6:49 PM, RG wrote:

Hi Teddy,

The antibiotics shouldn’t effect the testing. I’ll pass your contact information on tomorrow to RS.

Please keep in mind that there is no guarantee that we will be able to identify the genetic cause. Even if we do, it is unknown if there is any treatment based on what we find. We are essentially looking for a needle in a haystack without knowing if the needle is there or what its purpose it. Unfortunately that’s the nature of this, but hopefully it will at least tell you what the source of your sickness is.

If you have any questions about any of this, please feel free to call, 732-xxx-xxxx

or email me.


About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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