I’m writing this letter to my son David Noah in the event of my death and positing it here on my blog, because I know he doesn’t read it but it will be here for him when he’s ready one day to read it.
That’s why I’ve kept this blog all along…even though it’s not thorough (I can’t write about being sick every day…it’s enough to live it 🙄), and I don’t advertise or tell people about this blog (so no one reads it),
but I’m keeping this blog for my son Noah. So that he can hopefully find answers one day to questions he may have when I’m no longer around to answer them.
And the rate I’ve been going these last few weeks, I can barely get out of bed I have so many infections at once (and of course no fever or elevated wcb…),
not being around might come sooner than later, so I feel like it’s important to write this letter…
I’ve been thinking a lot about how to best approach your future, and when I think about trying to find the right words or how to even start a conversation like this, the first thing that keeps coming into my mind is the word hope—
Medicine is getting better every day, leaving me *no* doubt that someone, somewhere, one day will solve this in your life time—
And more importantly, I feel like if we develop the right plan for you, of diet, lifestyle and vitamins/medications, there’s hope for a much more normal life than I ever did—if we can just build up your body up and support it in better ways than I did—
For example, your sleep schedule. We’ve been talking about this a lot lately. Your latest bout with pink eye has been a reminder that must get sleep. Teenage angst and all night study sessions are not in the cards for you and you must manage your time accordingly. Once thing I’ve often commented to Dr. sherman, in my observations about myself, the one thing about my twenties, is that whenever I did work a full time job — meaning, I wasn’t in college or graduate school where I had flexible hours — whenever I had to be someone early and work 8+ hours a day for weeks on end I always got sick.
Not right away, but within 6-8 months I would get really sick. I would get pneumonia.
(Except when I was pregnant, but that’s because my ‘boss’ was my soul mate, and let me sleep on the coach whenever I needed to, allowing my immune system to continue to compensate for habits that I had kept me from getting sick all the time in college—)
I’ve had been thinking a lot lately about the importance of medicine and lifestyle habits—-because I’m always saying how you have what I have, but you have it worse then me—
because you’re being more closely followed medically than I was at your age (for example, you’re actually on daily antibiotics, etc),
Clinically—you’re actually doing **better** than I was at 15 years old.
Yes, you’ve had a few breakthrough infections this school year and a brief hospital stay with the flu,
but when I was a freshman in high school, I had more serious infections, and I was just months away from repetitive strep infections that led to my tonsils coming out, several bouts with bronchitis, pneumonia, yeast infections, appendix out with an atypical presentation, not to mention the strange E. coli infection when Dr. Pamela Zarick pulled my mother aside to tell her something wasn’t right—insisting it wasn’t normal that I didn’t have a fever or elevated wcb even though I cultured positive for a severe ecoli infection—
As difficult as life is right now,
the water was actually rockier for me at 15 years old than it has been for you.
And that’s a good thing—-a **really** good thing—
Because what that means,
is that if you continue to stay on top of your daily antibiotics, if you develop a diet and vitamin regiment that supports your immune system (cod liver oil, vitamin B, etc,
and most importantly,
you adapt your lifestyle to be slightly different for your peers—like account for the fact you *must* get a lot of sleep, and that sleep is more important than homework—
Your path in life might continue to be less bumpy than mine was for many more years to come.
I have no doubt the you’re going to need IVIg at some point. Zero doubt. It’s not a cure-all, and it definitely doesn’t raise our wcb or induce a fever,
but it’s one of the best things modern medicine can do to help boost the immune system and it’s changed my life dramatically since I’ve been on it.
Yes, I still suffer a lot, and yes, currently I have perhaps more funky infections that I’ve ever had at the same time, ever, before in my life
(My neck infection, possibly a leg wound infection, bronchitis, and I currently have secondary Vaginal and throat thrush galore 🤢),
but there is no doubt IVIg has helped keep me afloat these past few years, has kept me able to fight—kept me moving forward—
where I would have sunk months ago completely without IVIg. (My doctors saw me go under a lot without IVIg too.)
I know it’s going to be scary if I can’t make it through this storm of infections—I see it in your eyes, that you understand how sick I am perhaps even more than my doctors right now—You understand that there might just be one too many waves in the storm for my body to handle it, and that my boat might finally capsize—
And if it does indeed capsize —
I **dont** want you to see it as a moment of defeat.
I want you to see my capsized boat as an opportunity to learn.
You’re going to do much better than I ever did,
because you have records together in one place. You have a godfather who loves you and is looking out for you. You have doctors who’ve know you since you were a baby, so one problem here and one problem there, aren’t being ignored because I had thirty different doctors and no one keeping continuous records.
You’re going to be okay, and even more than that, you’re going to thrive. You’re going to thrive until medicine solves this for good,
then when it’s solved for good you’re going to be even stronger than a normal person because you’ll be able to use all of that built up energy from being fixed to help other people like you.
But this is how you need to do it. Important Noah. This is my prescription from Dr. Mom to you 🙂
1. Stay with doctors who know you. I know you know that, but as Dr. Hansen said at the NIH, it is absolutely **vital** in your case so I have to say it again. Like that shot of IV Rocpehin in the ER when you had the flu. Most pediatricians wouldn’t have done that, but i have no doubt it helped you get through it because it protected you from developing secondary bacterial infections. And it happened because the doctor knows and trusts you.
2. Build a strong lifestyle, medication and vitamin/supplement schedule to give your body what it needs to help stay afloat. Vitamin B, vitamin D, cod liver oil, daily antibiotics, etc. Stay on top of all of this like it’s an oxygen tank you must fill every day.
3. Don’t lie to yourself about your situation. Ever. Don’t bury your head in the sand because it’s so much easier to believe you’re normal like everyone else, instead embrace your immune deficiency directly like a dragon you know and be grateful you understand your dragon when other people get blindsided and don’t get a chance. Normal people die young all the time because they didn’t think they could possibly have anything serious like cancer, be grateful you understand how fragile life is and you’re going to face it head on with an army of good doctors, intelligence, intuition and faith. Faith in yourself. Faith that you will find the help you need when you need it. Faith in what you know and feel about yourself, and faith in what you’ve learned will protect you in the future.
You’re smart, kind, sensitive and charming. You will go on and accomplish great things with your time here on earth,
(**write those dang books Noah 😜👍**)
but every day **must** begin with taking the steps you need to fill in the holes in your immune system until they’re solved. Steps that might be annoying, steps that other people don’t need to take, steps that some people might not even believe you need to take because you look so healthy,
but steps you need to take so take them.
You’re already doing better than I was at 15 years old Noah, and that’s a really good sign. It means that medicine and due diligence and wrestling the dragon head on is *working*.
Just if something happens to me, don’t slide back, as tempting as it is will be because I won’t be around to remind you of it’s importance, and others won’t remind you because you look so normal.
And we always look normal.
It’s a blessing and a curse.
Just remember to honor what it is you need to do for yourself every day, maintain relationships with doctors who understand,
and you will stay strong enough until medicine catches up and fixes it.
And the person who fixes it, might even be you Dr. Noah. It might even be you 🙂 Or your friends. I know medical school isn’t your dream but unless you find a way to make millions of dollars (which I admit you might :), but unless you’re wealthy, going to medical school will help protect you.
Your closest friends will become the people who can save you.
You will make it Noah. And I will be so proud of you. This is what I have fought so hard to stay alive for these past ten years, I have fought for this moment. To live long enough for you to have the information you need to live a long and prosperous and fulfilling life.
Even if my boat capsizes tonight, I made it Noah. I’m grateful and happy. I know you will be okay. The struggle was worth it.