Remote Patient Monitoring

Posted on July 22, 2022 by Margaret

Because Nelson was diagnosed with Covid-19, he was part of a unique club of people who can track their health at home. Today he received a home monitoring kit that would include the basics of a doctor’s exam without a visit to a medical office.

Included in the kit:

A mobile device and charger
A blood pressure cuff
A pulse oximeter
A scale
A thermometer
An arm band

To start the physical, Nelson will simply push the “today” button on the mobile device, and a list from his doctors will pop onto the screen. He follows the instructions to take his own blood pressure, check his pulse and oxygen levels, weigh himself, and take his temp. He pushes “save” after each task, and once they’re all finished, his vitals will be on their way to his Mayo Clinic Care Team.

The kit also includes an arm band they want him to wear all the time except when he’s showering. Through this, Nelson’s team can monitor his health continuously. In the case of an emergency, they will let him know what to do either through a phone call or on his kit mobile device.

Nelson described this new system as “Big Brother watching me,” and said that someday we’d probably all be monitored like this, around the clock—only half joking.

He is on 4 liter oxygen all the time now and hopes to be able to lower that number while not needing to use it continually. It’s difficult to be tethered to a tank, but he’s thankful for the help it gives him. His breathing is still a problem, with his left lung producing about 700 milliliters every day. Ann Sophie continues to drain the fluid, after which he can breathe better for a few hours.

Thank you for your prayers and your concerns for Nelson. He and all of us are deeply grateful.

“With you, Lord, is the fountain of life. In your light, we see light.” (Psalm 36:9)

Lock and Key

Posted on July 21, 2022 by Margaret

We were all thrilled when we learned, about a week ago, that the key had been found to unlock the mutation we’d all been hoping they would find, to treat Nelson’s cancer. This would mean that a targeted immunotherapy was possible—with a good chance to overwhelm cancer cells by teaching his own immune system to attack them.

Today, with Nelson out of the hospital, he and Ann Sophie (and Will) met with an oncologist who answered many of their questions and described what might be ahead.

First of all, Nelson will have to wait a week or more before anything new is started, since they want him to finish the course of antibiotics he began in the hospital a few days ago. After that, they may begin immunotherapy, depending on how he’s doing.

They’ll begin the new treatment slowly with low doses of two medications by mouth, watching to see how he tolerates the side effects. And of course they have to clear everything with their insurance, usually a 10 day process. The doctor assured them that if the side effects became too much, there were several other combinations of drugs they could try.

The BRAF mutation he has is super rare for lung cancer, only 1-2%. Half of all melanoma patients and 100% of all leukemia patients have it. That’s good, because they can try the specific immunotherapy for it, but negative because the prognosis is not as good long term for that mutation.

Two-thirds of patients do respond to these drugs. If Nelson doesn’t respond, he can always go back to chemotherapy, which does seem to be working… though it’s been hard on him. And that’s about all we know for now.

As always, we’re trying not to look too far down the road, because God has already gone there and will show us the way on a need-to-know basis.

“By faith Abraham obeyed when he was called… And he went out, not knowing where he was going.” (Hebrews 11:8)

No Place Like Home

Posted on July 20, 2022 by Margaret

Nelson got his wish today when he was discharged from the hospital. There was a difference of opinion between the doctor and the nurse, but the doctor won out and he went home…with four-liter oxygen, a blood pressure cuff, and oral antibiotics to conquer his latest infection.

Little Will was glad to see his papa, and vice versa. It’s always best if families can be together. Hopefully Nelson can rest better now, to regain strength and get rid of the last traces of his Covid.

He and Ann Sophie are scheduled to meet with the oncologist tomorrow to discuss what will happen next. Is he strong enough to get another blast of chemo? Or will they switch over to the immunotherapy, now that they found the mutation they were searching for? Or will they postpone both until the infection has cleared? Or will they chart a new course that we know nothing about yet?

As always, we have more questions than answers. In this moment, though, we’re praying all will go well on Nelson’s first night back and that he will stay out of the ER and hospital for a long, long time.