Category Archives: Adult Children

Lock and Key

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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

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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.

“May you be strengthened with all power, according to his glorious might.” (Colossians 1:11)

The Bottom of the List

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We promised to let you know if something happened with Nelson’s health, and sadly, it has.

On Sunday evening, Ann Sophie noticed he wasn’t himself. He’d been sleeping most of the day, with an increase in coughing. His oxygen was at 76, dangerously low, and even with a 4-liter oxygen assist, it wouldn’t register above 91. His fever was 100.8, pulse 120, blood pressure 93/68.

Nelson, Ann Sophie, Will, and her mother Astrid are still technically in a covid quarantine period, but the oncologist said Nelson should go to the ER anyway. This is always last choice on Nelson’s list, and being admitted to the hospital is even below that. But he went, and it wasn’t long before they had admitted him, this time to the Methodist Hospital of the Mayo Clinic.

He received antibodies, but the doctor found that because of his depleted immune system, he had contracted another infection, possibly bacterial pneumonia. They began IV antibiotics and gave no promise about going home any time soon—exactly what Nelson had hoped wouldn’t happen.

His breathing, always troublesome, called for a draining of the left lung. They collected over 1000 milliliters, which helped him breathe better but was more than had been collected in quite some time. Even after this improvement, though, his oxygen would go down immediately if he removed the nasal cannula.

Amidst all of this bad news, there was one positive development. His platelets had gone from a dangerously low count of 27 to 325. This means the bone marrow has probably recovered from the last blast of chemo three weeks ago and is now doing its job with the platelets. We rejoice over this victory.

But Ann Sophie’s assessment last night when she left the hospital was that his swelling had increased throughout his body. This is fluid that’s being produced by the cancer itself. There was concern over the extreme swelling in his left arm as a result of the extensive clot beneath his collar bone that extends into three veins. Last we knew, they were talking about another ultrasound to look closely at it.

This report probably includes more medical detail than you might have needed, but many are asking. Thank you for your continued prayers for Nelson and his family as this disease yanks them in and out of crisis after crisis. May God bring peace, progress, and even some fresh joy to them in the midst of all this misery.

“He who watches over you will not slumber. The Lord will watch over your life. The Lord will watch over your coming and going, both now and forevermore.” (Psalm 121, parts)