I don’t think there’s ever an easy way to ‘get your affairs in order’, especially someone like me who has so much going on and I left too much disorganized.
I have to admit, I’m sad to hear that I’m at the end of the road with Ryan…I hope writing this blog didn’t hurt Noah and I in some way. Sometimes medical people get spooked when they know you’re sharing, but I wrote this blog to put some of the information in place for when this time comes–I wrote this blog as a place for people to come for information on how to help Noah. A some people I realized if I didn’t actually start using names, no one would know who to contact.
The truth is, no one actually reads this blog…it’s so specific to my medical case, that the only people who read it are people who have been informed of it. I don’t even advertise this blog on Facebook.
I do not want my son David Noah to suffer the same way I do.
I’m hoping that my family and friends will rise to the occasion to put the necessary resources on the table to make sure that we solve his immune deficiency so that he can live a long and productive life.
I hope that death serves as the final warning that my son and I get severe disease without fevers or elevated wcb, so we dangerously ‘look sick’ when we have disease processes going on.
Please help my son.
Begin forwarded message:
Date: June 21, 2013 8:59:48 AM PDT
Cc: Luke and Sabrina
Subject: Re: Getting in touch with Dr. Kachru if necessary
Thank you for letting me know this–I did not realize we were at the end of the road with Ryan. I would love to continue with the doctor at Emory, and I apologize for being in delay. I have so much going on that things slip through the cracks.
I am currently in the hospital and my situation is very acute. They are doing what they can for me (IVIG and antibiotics), but this puncture wound from rotting wood has put me in a bad spot.
My friend Sabrina (who is the mother of Noah’s best friend) will take over trying to help Noah get the answer, but she is very busy right now helping her brother with his cancer. Noah’s godfather will help cover the expenses of any necessary travel or tests, but Sabrina will probably be the one to follow up and take him. Ideally, it will probably be best if things can be handled by shipping and Skype where possible. Dr. Kachru will always serve as a guide post from here.
It’s going to be difficult to continue, as Noah’s father, Luke is busy working and other people don’t understand the severity of the problem so they don’t see the importance.
I believe Sabrina understands and loves Noah, but she is limited by time. I am hoping that Noah will actually go and live with her full time after I’m gone, and visit his father on the weekends, because I know she will see that noah gets to the doctors on an ongoing basis (even if she can’t take him, she’ll find someone).
What I’ve learned the hard way, is that it’s much easier to be preventative and take preventative antibiotics and IVIG. Once a problem becomes more severe, it becomes a war because many people have a hard time understanding that we’re sick.
My experiences this week has been a chilling reminder that I should have been more diligent about solving this problem. I almost slipped through the cracks completely due to my lack of an inflammatory response, but my primary care doctor jumped in.
The pain in my right lung is so severe it’s crippling, and he knows me well enough to know I don’t exaggerate or make these things up.
But of course I had a negative X-ray.
And all this could be avoided if someone could find a way to turn up whatever it is that’s not functioning properly, so we could get fevers and other things like that…
It’s so dangerous because we too easily get dismissed for being healthy when there actually is something life threatening going on. And in our for-profit medical system, it makes it even harder because there is so much pressure on medical personnel to push patients out due to ‘costs’.
I hope that someone can find a way to start IVIG therapy for Noah. I hope that my death will help others understand the severity of the problem.
Thank you very much for everything. I really appreciate what you’ve done for me and Noah.
On Jun 20, 2013, at 8:09 PM, Alison wrote:
Tara, I never heard back from you about getting in touch w the immunologist at Emory. Do you want me continue again? Ryan is a bioinformatics specialist, he did all he could do by running the tests he did. Yours is an immune issue, and while its a genetic disorder, those gene tests are limited. -A
Sent from my iPad
On Jun 20, 2013, at 8:10 PM, noah_kp wrote:
I am in a very rough spell right now due to a deep puncture wound that I received in my foot Sunday night from a rotting piece of wood. My body can not fight this off.
We are doing what we can, but I just wanted to take a moment to thank you for everything you did, and I am begging you–pleading with you–to continue to solve this immune deficiency to help my son.
We present so atypically, it’s extremely difficult for doctors to understand that we are even ill–even deathly ill like I am right now–because of my lack of a fever and an elevated white cell blood count.
I wish I could put words around the intensity of the pain in my right lung that has come on fast and furious this afternoon. It is a vicious and overwhelming pain, and the ER doctor just does not understand that if is an acute infection lodged deep within my lung. He just can not believe that it is possible.
Thankfully, my primary care physician and my immunologist, understand how infections work within my body because they have lived through countless little and big infections. It has been nothing like this before.
I am begging and pleading and begging again to continue on with your journey. My son has a beautiful mind–he is a rare treasure–and he will do a lot of good for the world if given the opportunity. Please help him.
We are doing what we can to help me, but this is vicious and my body can only do so much. I could feel the weight on the ER doctors face that the medical institution does not agree that this is as acute as what it is. I am hitting the wall.
I wish you all the best and I am extremely grateful to you. Please follow up with Dr. Kachru, and she will get in touch with my friend Sabrina who will help Noah get the answer. She is a special person, and will continue to take Noah for follow up care. I know Noah will be okay if he is monitored closely by doctors on an ongoing basis. Keeping Noah’s relationships with doctors is critical to his long term survival, and she understands that.
Thank you for everything,