Hildene
Today, Wil and I are headed to the Summer home of Robert Todd Lincoln, son of President Lincoln, located in Manchester, VT. RTL came to VT to this residence for 20 yrs, and died here 25 July 1926.
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Tried to post this earlier (twice)--mebbe third time's the charm?
ReplyDeleteBeen a long time since I posted about Tanner, who just turned 14. This is from his mom, today.
For those who wondered what we figured out regarding Tanner:
This stay was kind of like a tune-up. Nothing huge was discovered or changed. He saw oncology, cardiology, pulmonology, respiratory, behavioral health, psychiatry, interventional medicine, dermatology, physical therapy, music & art therapy, and the school zone. He had lots of blood work, urinalysis, lasix to get rid of fluid & IV saline to add it, CT scan, echo of his heart & pulmonary function testing.
His nighttime oxygen needs (as well as daytime) increased for a couple days. It always feels like a guessing game to figure out what the cause of his symptoms is. It was determined that his lung function may be slightly worse but his heart failure is stable. The gvhd (graft vs host from his bone marrow transplant ) causes "air trapping" in his lungs, which means he can't breathe out all the carbon dioxide and as a result doesn't have enough room to breathe in the amount of oxygen his body needs.
I also have been suspicious that a vitamin b12 deficiency could he playing a role in some of his symptoms. (Body aches, shortness of breathe and chest pain, headaches, dizziness, fatigue, body aches , falling on occasion & a general "out of it", not feeling quite right feeling along with some depression and anxiety.) Testing showed he was deficient and we have started vitamin b12 shots.
What else is new? We will continue to use oxygen at night and he said started a new inhaler that is a steroid & a long acting asthma-type medicine. It was determined he has adrenal insufficiency and isn't making his own cortisol. So in addition to the steroid he is on for his gvhd , he is getting hydrocortisone to hopefully more closely mimic what his body should be producing. He has also started a new blood pressure medication since high blood pressures take their toll on the heart.
Tanner continues to do better and better with his newly diagnosed diabetes and hopefully having stable blood sugars will help him feel better too.
Dermatology doesn't think the lesions on his arm are cancer. They took cultures in the hope of pinpointing the cause. Tanner is now doing 2x a day vinegar soaks followed by applying a strong antibiotic and covering will an occlusive bandage. We are also temporarily trying prograf ointment on his arms but may need to switch back to the steroid cream.
Normally today would have been an ECP day but considering the week he's had and how crummy ECP can make you feel, he was given permission to miss this one treatment.
Tanner continues to find happiness & peace in playing and sharing his ukulele music and spending time with people.
Every now and then when I have a moment with the doctors without Tanner in the room, I ask them to speculate on what the future looks like for Tanner. Will his heart (and lungs, kidneys & liver) last him a lifetime? Is there hope of a normal future for him. No one can say for sure. Although it is unlikely that he will ever have the normal he craves so badly or the "life expectancy" he deserves. Yesterday as I was thinking about this while we were driving home I started to feel a deep sadness. Almost instantly the thought came to my mind : "trust in God, not in man."
Thanks for all your love & support
Holy shit! The poor kid has diabetes on top of everything else? And what an everything else! To tell you the truth, Puddle, I didn't realize he was still ill at all. He and his family have already gone through so much, and it's never ending. I don't know what to say; it's devastating. If this were my child I'd be angry with God, not trusting in Him. Tanner's mother must be a very strong lady indeed!
DeleteLove and good vibes to them♥
That IS a boatload, puddle. Having done and continuing to do what mortals can, one can leave the rest in the hands of the divine with no guilt.
ReplyDelete{{Hugs}}
Alan
listener--from the CDC information site on Lyme Disease:
ReplyDelete"People treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely. Antibiotics commonly used for oral treatment include doxycycline..."
I remember when Lyme Disease appeared in North America, and how very rapidly it spread across the entire continent. As memory serves me, it only took two or three years. You got to the doctor very quickly; all should go well. When it was a mystery disease, people would not seek out medical advice for a long time, and might bounce around from doctor to doctor to doctor before it was even considered. Then treatment took a long time. The early serological tests were very poor; hopefully the current ones are better, but they probably wouldn't be of any use at such an early stage. Good you were alert to the possibility.
Alan
Alan, thanks for the kind words. I must say, though, that the CDC gets about the same amount of respect from me as the AMA. Their information is so outdated that it's crap, and worse than crap because their word drives what insurance companies will allow, and how doctors will venture to treat. If MDs swerve too far from the AMA and CDC playbook they can lose their license. This is why the best place to go for Lyme treatment is to a Lyme aware naturopath who has the ability to prescribe. Too many people are in physical distress because doctors won't treat them. Worse, the testing being done for Lyme is terribly faulty. The CDC knows it's faulty and instead of correcting the problem they simply eliminated the part of the test that messes up. However! That part of the test, when done correctly, can reveal Lyme and a number of other tick borne illnesses as well.
DeleteI have a dear friend who became ill with one of the lesser known illnesses, and went from living normally to not being able to use her legs in less than 24 hours. Then her brain began to get foggy, her arms wouldn't respond and her breathing was encumbered. It was scary!! She had ups and downs and was tested three times at three different hospitals and told three times the tests were negative. It wasn't until she got onto a chat group and others gave her information that she ventured to see a naturopath. He did more rigorous testing and found the problems. He developed a protocol for her to follow and the first step was to build up her immune system so that her body could even take in the treatment. It took her 18 months to get help, and she has been on the protocol for over a year with very good results.
She was the one who told me to call my doctor. Neither of us believed the doctor would prescribe. I was gathering information to take to the naturopath when I got word that she'd called in a prescription. I'm one of the lucky ones, especially in that I had a mark on my forearm that I could photograph and share. My friend never saw a mark at all, so had no clear way to say she thought she'd been bitten by a tick. She had never seen a tick and didn't even think of that at first. It was by googling her symptoms and finding a chat group that she began to suspect a tick.
Our health care system is such a mess that we have to crowd source our health concerns. I posted the photo of my bite mark on Facebook and my wildlife biologist son said he thought it looked like a tick bite, but thought it strange that it could be brushed off so easily. I agree. Maybe I simply caught it at exactly the right angle. Pure dumb luck.
MAYBE it was some other bug, like a black fly (as some suggested). But I'd rather be safe than sorry in this situation.
Several tick-borne diseases (not Lyme) are caused by types of bacteria (the name escapes me at the moment) that have evolved to be obligate intracellular parasites--they can't live on their own, having lost metabolic paths etc. that are essential for free life.
DeleteAlan
Kiddle's coming today, soon. We're under a flash flood watch till 8 tonight. Gonna see who's faster. Funsies. Area's wide enough I doubt it'll be us. Sunny right now, BTW.
ReplyDeleteWow, what a beautiful place! Thanks for the photos, Listener.
ReplyDeleteThe photos hardly do it justice! I got many today and will share some as the days pass...
DeleteRTL was a wealthy corporate lawyer. He was general consul of the Pullman Palace Car Company at the time of the Pullman Strike.
DeleteAlan
Well, here's a new one. Came home to find an Amazon box in my mailbox. And inside is an air filter for an ATV. Obviously, I did not order this and it does not show up on my orders list. So I call Amazon and speak to a guy with a foreign accent. This is the first time he's ever had to deal with something like this. Turns out: on one side is a mailing label with my name on it, and on the other side is a mailing label for a man in Plattsburgh, NY.
ReplyDeleteSo I check the two tracking numbers and find that, in their eminent wisdom, Plattsburgh PO crossed out the Plattsburgh address and sent it along to me. Amazon says they have no clue about either one of us ordering the item. However, I know it came through Amazon because I only write my address a particular way (with instruction on how to find my house) on the Amazon site. Amazon has no mechanism for me to return the item. They want me to keep it or donate it. Nope. I'm going to call the Plattsburgh PO on Tuesday and ask if they know the guy it belongs to. I hope to have my PO send it back to them to finally deliver.
And guess what. The filter got a little dinged up in transit. Beautiful, huh? Bill thinks it could still be used, though.
But HOW did a label with my address get onto the back of this package?? Did I return something and the warehouse folks reused the box without removing an old label? That would be a breach of privacy. Hmmmm.
puddle, back when we were all breathlessly following Tanner updates, and Ally updates, we were also following some Cuyler updates. Today I saw Cuyler's aunt for the first time in over a decade, and learned that he is now 20 years old and doing pretty well. She showed me a photo of him and he looks to be about 14. But he's overcome a lot and holding his own, more or less. Tanner, Cuyler and Ally will all always struggle to come extent, because their bodies have been through the ringer and can't fully recover. For example, Cuyler's radiation means he can never father a child. Ally too, from all the radiation, chemo, 3f8 treatments and more. So harsh given that she is the only grandchild on both sides of their family. But I feel so much for Tanner because he's struggling so much NOW and day to day. May medical know-how increase and be enough to pull him through these difficult experiences and maladies! XOXOXXX 💜❤️💛❤️💜
ReplyDeleteWhy the extraordinary story of the last slave in America has finally come to light[Click] Zora Neale Hurston’s Barracoon was written in the 1930s, but has only just been published. Why has it taken so long for the remarkable story of Oluale Kossola to be made public?
ReplyDelete—Alan
Thanks, listener! He sure needs all the love and prayers anyone has.
ReplyDelete