Category Archives: Parenting

Nelson’s Day

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Many of you frequently ask, “How was Nelson’s day?” Some days are more dramatic than others, but during a typical day in the hospital, here’s what he’s doing.

Blood draws are frequent, starting at 5 AM. A lab lady knocks and enters every 4 to 6 hours, dragging a massive medical cart behind her. She searches for a good vein in Nelson’s bruised arms and sometimes has to make multiple tries. This is especially hard on Nelson during the night when she rolls in at 1 – 2 AM. It’s not a happy way to wake up.

As soon as the shift changes (6 AM for doctors, 7 AM for everyone else), The medical personnel begin their visits. They take Nelson‘s vitals again and again, change IV bags, check lung fluid accumulation, record it all on a computer and fuss over him till he wishes they would go away.

After that, a parade of other “helpers“ come and go throughout the day— a skin specialist to check on bedsores, a palliative care nurse to ask about pain meds, a social worker, a chaplain, a cleaning crew, a food server, and a transport person to take him away for x-rays, procedures, or tests.

The nurses are in and out multiple times every hour, delivering meds, fetching ice water, checking oxygen, updating the whiteboard, and unnumbered other tasks. And of course the doctors on Nelson‘s team of about 20 are part of the parade, too. When they come in, they often bring students or interns with them. Sometimes a nurse accompanies them, and the visitor headcount increases.

By the end of any hospital day, Nelson is thoroughly depleted. He asks for the lights to be turned off, even when it’s not bedtime. And his frustration mounts when every person who enters his room asks a series of questions. If he has just taken a pain pill for his constant lung pain, he finds it difficult to answer.

Tonight when Ann Sophie, Will and I were visiting, he told us that each day felt like an eternity and he was just marking time so he could call the day done.

 

Wanting to encourage him today, Ann Sophie suggested we all go to a rooftop patio that’s furnished with comfortable tables and chairs, just so Nelson (who loves the outdoors) could be outside for a while. It took a crew of helpers to free him from his many tethers, but he complied and seemed to enjoy the patio, once we got there. It wore him out in a good way, since so much time in the bed wears on him in a different way.

Nelson always thanks us, and his words about the patio were positive, but since he’s been in the hospital, there hasn’t been much sparkle behind what he says–unless he’s talking to baby Will. Then he becomes animated.

Little Will, approaching 4 months old, is a celebrity on the oncology floor. He’s only there with special permission. The nurses call him eye candy, and when he’s smiling, there’s no better mood-lifter than him. 

We’re praying Nelson will get to come home soon, but not too soon. The clot issue, still unresolved, and his swollen limbs will have to improve before it’ll be safe to leave the hospital. He knows that but then said, “This is all so hard.” And we agree.

“When the righteous cry for help, the Lord hears and delivers them.” (Psalm 34:17)

Just Following Along

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Today begins a new week, one in which the results of the biopsy will come in. They took nine bits out of a cancerous lymph node two weeks ago, though it seems like two months ago.

But today brought word of the first analyses, and what we heard was good news. Though they are still looking for certain mutations that will swing the door open to the new, effective immunology treatments, they did have one piece of good news. The numbers showed that Nelson’s immune system is extra-strong for his age, which should help him during immunology treatments—should he qualify for them.

Meanwhile, they told us he’ll probably start chemotherapy tomorrow, even before all the biopsy results are in, possibly alongside immunology. If they give him the first blast before he leaves the hospital tomorrow, it will be a helpful kick-start (the nurse’s words) to his long-term treatment.

One new problem is that Nelson’s veins are flattening. Drawing blood morning and evening is getting more and more difficult. The staff has to dig for it, and Nelson has bandage wraps around multiple places in both arms. He’s a good patient and endures without complaint, but it’s hard to watch them try and try.

Today they wheeled Nelson from his room multiple times for more tests that they can compare to last week’s information. Sadly, we heard the words “fast growing” today, an invitation to lose heart. But God wants us always to be on a blessing-watch, and today he gave us a special one.

Though no young children are ever allowed on the oncology floor, we asked Nelson’s nurse if maybe just once we might bring Will up to see Nelson—only briefly, and in the lounge at the end of the hall, not in his room.

The nurses are a fantastic crew, and this one went to work on it immediately. Today as Ann Sophie, Will, and I entered the hospital, we were stopped by the doorkeepers like everyone else. Ann Sophie mentioned that the baby should be allowed in today, expecting opposition. But the woman at the desk brought up Nelson’s patient-page and quickly said, “Yes. I see that here. Go right up.”

We skipped the lounge and went directly to Nelson’s room. No one stopped us. Will was wearing his onesie that said DAD’S BEST BUDDY and charmed all the nurses and other visitors along the way. His daddy was very glad to see him and vice versa. And thankfully Will was an angel throughout the hour we were there.

 

 

Another blessing was that the staff told us they’d gotten permission for Will to be on the cancer floor any time we wanted to bring him…a standing order of sorts.

And one more good thing was that the staff had finally gotten ahead of Nelson’s pain. When we came, he was relaxed and content, a big gift to him—and to us. He was sleepy, since they had literally doubled his pain meds, but that was OK, too.

And so we forge ahead, pleading with God for more years with Nelson, and doing our best to follow his lead.

“Your ears will hear a voice behind you saying, ‘This is the way. Walk in it’.” (Isaiah 30:21)

Best and Worst

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It’s been a year of non-blogging for me, since other things have taken precedence. Although much of 2020 offered up negatives, our family can also report a big 2020-positive. My 15th grandchild, Elias, was born.

This little guy arrived before his due date—well before. At 7 weeks premature, he was expected to need lots of assistance from the Neonatal Intensive Care Unit, but he surprised us all. Though he weighed only 4 pounds 3 ounces, he was in great condition and hung around the hospital for just 18 days.

The nurses were impressed with his fast progress, marveling that he never even needed oxygen. Now, three months later, his development is right on schedule, evidenced by his crinkly-eye smiles and lots of direct eye contact.

His diligent parents, Louisa and Teddy, are delighting in this wondrous 2020-positive.

 

 

 

No year, however, is without its negatives, and 2020 delivered a big one to our family. My brother Tom and his wife Leslie were both killed in their own home by an intruder, a shock from which all of us are still trying to recover. The mystery remains unsolved, and our hearts are broken.

On Friday, a new calendar year begins—day #1, week #1, month #1. None of us knows what will happen on the 364 days that will follow, though we’ll probably try to guess. But as my mother used to say, “God only knows, and he won’t tell.”

So how can we move into the new year with confidence when so much is uncertain? There’s only one way—to believe that our omniscient God will tell us everything we need to know, when we need to know it. And all of it, what we’re surmising and what actually occurs, will be coupled with his promise that he’s got the whole world in his hands. That means we as his children have nothing to fear.

As hard as it is for us not to know what’s ahead, we should remember that in every year, there will be negatives but also positives. Our best bet, then, is to simply trust God, leaning on his power and wisdom instead of our own.

“Do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised.” (Hebrews 10:35-36)