Instructions for when I’m dead

Shannon,

As difficult as this may be, this is how I want you to handle my death.

**Don’t** call the paramedics right away. I’m already dead. There isn’t anything they can do.

If you find me when Noah is in school, go and pick him up — tell the Attendance office it’s a family emergency. You can’t call Noah, he will know something is up. Just quietly pick him up.

Pick Noah up, bring him home. When you get out of the Uber, outside, tell him that I passed. Then, give Noah the option of saying goodbye to me **before** the paramedics arrive. Noah should feel like he can talk aloud or say whatever he wants to say. He should say it. If he wants to be angry, be angry. Say it.

If Noah says no, it’s too creepy (or whatever) get Cookie and bring Cookie to Noah. Text Sherry (Emily’s mom) from my phone and ask her if Noah can come over for an hour or two. If sherry is busy, text Michele (Sienna’s mom) or Tina (Daniel’s mom). Get Noah in the company of someone else while you take care of the rest.

Then call Dr. Rita Kachru, and if you can’t get in touch with her, call Dr. Sherman. My body needs to go some place for a full medical autopsy. They need to document and sample *everything* they find, for my final records. They’re going to be “shocked” by the number of diseases tissues they’re going to find (well, probably not them). Just everyone else around them. Document it as the last evidence of how sick I was on the inside when I looked so healthy on the inside.

After that’s all done, send my body to Hollywood Forever Ceremony. Noah and I found the cheapest cremation wall near the back of the cemetery, it’s on the road. Noah will remember it. (I told Joe about this.). It should say Tara Leigh MacKay (Kittle). ‘We can help the people who cross our paths.’ I’ll think about the rest.

**Text Joe immediately. His number is in my phone. He’s been expecting this for a long time.

When the paramedics are getting my body, Noah must NOT be inside the apartment. It isn’t something family should watch. Get Noah to one of those people or to Joe. Ask the paramedic to call you when they’re done.

The day after,

Take Noah to see Joe. Leave Noah *alone* with Joe. Tell Noah to bring a book, just to make him feel normal, though be probably won’t read it. Joe will probably be busy, but Noah can sit there for a few minutes.

When Noah has to leave, ask him what he would like to do to celebrate my life.

Noah needs to go back to school as soon as possible. It will be hard, but he needs school. Let Danny know at Norman Aide what has happened, and his counselor Hanna. They will alert his teachers. As painful as it will be, Noah will need the structure of school, and his friends at school, to help him get through it.

(Contact Mr. Mathias directly about having the Acadeca team have a little memorial for Noah. You can bring them a cake and they can all eat it together. Simple and not too much. There can’t be a normal funeral because I don’t have many friends, I’ve been sick so long. Funerals are to help the living, so a cake to Acadeca class is a nice alternative.)

Joe is very busy a lot of stuff with his life, but maybe Noah can go there for a movie night, ideally something 1960s related. Leave Noah there alone with Joe, or invite Zoe to go along too.

If Noah is at Luke’s when this happens, you need to tell Luke Noah needs to come home immediately, without telling him why. Noah needs to be given the chance to day goodbye before they take my body. There is no need to panic or rush — I’m dead. A few hours isn’t going to hurt anything.

This was some of the best advice I read when I was reading about how to prepare for the death of a loved one, before Bill died. The key thing the article stressed is to not panic and call paramedics right away, but to take your time and say goodbye to your loved one. It helps bring peace before all the formalities is the dying process starts, and gives a chance to say good-bye in the peace and quiet of your home before the chaos sets in. ❤️

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Note I posted in response to someone freaking out about when they’re going to die—it got a few positive feedbacks, which surprised me ❤️

I posted this note on Facebook in response to someone freaking out the fact they’re going to die (recently diagnosed with stage 3 cancer),

and as someone who has been close to death many times and come back —.and each time not knowing whether I was going to come back — I have to say people waste waaaaay too much time and energy getting upset about the fact they’re going to die.

We are all going to die, and yes, some of us sooner than later, but how do you want to spent those last moments? How do you want your loved ones to remember you? Freaking out over how unlucky you are and how awful it is to be dying, or to remember you for savoring every moment you can, while you were putting up a good fight to stay alive?

My best friend died when we were 6 years old of cystic fibrosis (very common where I grew, so I had a few friends die of this disease before they were 18 years),

and Samantha and David never knew what it was like to be kissed or to fall in love or the beauty and pain of having a child or the satisfaction we feel when we graduate from high school and college — they never got to experience any of that —

Of course I’m upset my dreams were smushed by my serious health problems, and of course I want to live as long as I can,

But if I died tonight in my sleep, I would want everyone in my life to know I died a very lucky woman, to know how much I loved them and how grateful I was for all of the things so many people did to help me fight my serious illnesses for many years, at times a desperate fight to keep me alive for as long as I did live —. not just friends, but doctors, nurses, even the security guard at Cedars and his friendly “I hope you’re feeling well today”, all helped to keep me going —

Perhaps I’ve just been around sickness too long for me to relate to ‘normal’ people, but people screaming about their fact they’re gonna die is missing the point of what it means to actually live.

Live gratefully, be humble, be generous, and be thankful — every breath is a gift, a gift none of us are entitled to—a gift nature has blessed us with. Don’t take it for granted. ❤️

***

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Dad’s devastating letter after baby boy dies of whooping cough

Dad’s devastating letter after baby boy dies of whooping cough https://www.yahoo.com/news/dads-devastating-letter-baby-boy-dies-whooping-cough-095844389.html?soc_src=community&soc_trk=ma

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NBC News: The doctor is out? Why physicians are leaving their practices to pursue other careers

Everyone needs to take a stand and get private insurance companies out of medicine. They are destroying how medicine should be practiced, and it’s leading to more and more doctors dropping out.

The Canadian healthcare system isn’t perfect, but the one thing I’ve noticed is that doctors are *much* happier in Canada—they get paid regularly, all their patients get what they need, and they don’t have to deal with the magnitude of bureaucracy that doctors have to deal with in the United States. If a Canadian doctor thinks their patient needs an MRI? All they do is write an order and the patient gets it.

The doctor is out? Why physicians are leaving their practices to pursue other careers
NBC News

“After 20 years, I quit medicine and none of my colleagues were surprised. In fact, they all said they wish they could do the same,” said one doctor. Read the full story

Shared from Apple News

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Email contacts for Cincinnati Immunology lab

I spoke with Cincinnati Immunology lab, and they said you’re welcome to email one of their doctors and they would recommend which tests to order through them.

She said either doctor would be good to contact, that they would be helpful:

Rebecca.marsh

Jack.blessing

Dear Dr. Marsh and Dr. Blessing,

I have a 15 year old patient, David Noah Kittle-Pals who presents with reoccurring upper respiratory and skin infections, without a fever or elevated white cell blood count, who was put on prophylactic antibiotics but has had 5+ breakthrough infections over the past year.

I would love to hear your recommendations regarding further testing at your facility which might provide insight into this case.

We recently discovered David had an abnormal result to his CD 19 level, and we believe this may be a clue to the root of his deficiency.

David’s mother, Tara Kittle, has an extensive history of infections, polyps, and autoimmune disorders dating back to childhood, including a positive blood culture (corney bacterium and endercococcus) with a wcb of 6.7 and absence of fever.

There’s also an extended family history of David’s maternal grandfather, great-grandfather, and great-great grandmother of deaths from cancer and long history of infections. (Throat, colon and leukemia).

Please advise.

Warmly,

Dr. Lauren Crosby

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Maybe you or Dr. Kachru can order the CD 19 test into UCLA?

I don’t want to wait to see Butte…maybe you can ask her to do it, under the guise of ‘then Noah will have the results to discuss when he sees Butte?’

I’ve been really sick the past few months (even worse than normal for me, I have a new brain lesion, etc), so I’d rather not wait because getting up and going back and forth all the time to doctors isn’t easy. It’d be much better to do the tests, then go over the results with people…it saves a trip to the office…

(Especially Butte — to talk about what? What more does he really need to hear? If he truly cared about Noah’s case he would have reached out to you. They have records, they have the referral to Dr. Wong in the UCLA system, Dr. Kachru is in the UCLA system, it’s all there. Clearly he just has cases he feels are more important. I’m not upset, I’m just practical about these things, if a doctor is resistant to help I just have to move on (in order to survive 🙂

Maybe if we order these CD 19/CD21 tests, and the results show insight, then he’ll probably help because our case will be more interesting to him. He just doesn’t want to spend the time thinking about what could possibly be the problem (since the possibilities are endless—they don’t even entirely understand the immune yet—), so he probably prefers a positive result to something, *then* wants to be involved in the discussion for how to treat it (if it can be treated).

It’s the thinking that’s so time consuming, and not of interest to most doctors…then you combine how healthy we look (which makes these specialists feel off the hook when preliminary tests come back ‘normal’—they would never blow off someone who actually looked sick—),

but doctors on the forefront of our case know it’s serious and can’t shake it, but sometimes these specialists feel they know better, so they also dismiss what their own colleagues are trying to tell them 😢.

Let’s figure out how to order these CD19/20/21 tests…

If UCLA won’t help, maybe if you call Cincinnati and talk with them, they might help? Maybe we should send blood to them?

Cincinnati has a new director of their Immunology lab—maybe if you just start fresh and ask her what wouid be good tests to run? She normally hears from immunologists, but if you’re passionate and concerned, I’m sure she’ll give you some ideas too—

https://www.cincinnatichildrens.org/service/i/immune-deficiency/diagnostic-lab

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CD21 and CD19 deficiency: Two defects in the same complex leading to different disease modalities – ScienceDirect

Some things in this article are ringing similar or our case — particularly the part about normal T, B and NK levels, normal IgM levels, but then all of these problems with infections —

(I admit I can probably only understand about 20% of it though…just enough to put some pieces together—)

I think this article is saying disease progression is different in different patients — Noah started getting sick when he was 2 years old (after he left the house and started preschool), and I’ve been getting worse and worse and I’ve gotten older—

Could this disorder also explain why IVIg makes me feel better? IVIg has made me feel better, from the moment I started it…if it wasn’t for this salivary gland removal infection, overall I was doing better than I had for years on ivig—

Can we start Noah on IVIg (even just a low dose if we have to pay cash for it?) Ask Dr. Kachru? IVIg will help Noah feel better, and it will help him gain some weight too—

I’m really impressed you stumbled up on this issue…and I’m very grateful. Of all the ‘fancy’ specialists Noah and I have been too, I love that you found one of the best clues to date 😍. Noah and I look so healthy, I can see most of these specialists blowing us off (not the NIH, but almost everyone else), and I’m always snapping at them “you should talk with Noah’s doctor or talk directly with my doctors directly — they know something unusual is going, they’re the ones on the front lines helping us stay alive, and keeping us alive is a constant, never ending job—nothing about this is normal —ask them—“

It sounds like there’s a lot of variations in severity of disease with this CD 19 problem, and Noah fits right on the potential spectrum—not the most severe case, but definitely bad enough to cause problems all of the time—

Thank you very much. I’m almost positive this is it. It even effects the complement system, which I’ve suspected was somewhat involved somehow—

Now let’s figure out how to test it 😍👍. I’ll start researching around for labs who can test this…

https://www.sciencedirect.com/science/article/pii/S1521661615300279

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