Turning Things Around

Rough.

We knew it would be.

The side effects have been all over the board.

Low blood pressure is a major one.

It has been an issue for him since arriving on Monday.

It can keep him from receiving his doses.

The plan is a dose every 8 hours.

During the in between hours his blood pressure is closely monitored.

But it's the hour before his dose that is most critical.

Much of his team's decision is based on the numbers of the last hour.

My man has kept things interesting.

For most of the in between hours his pressure has been low.

And I mean, real low.

The pharmacy department didn't even mix one of his doses this morning because of his numbers.

They told his nurse the team would "never" move forward with the dose and it would be "very unlikely" his pressure would improve that last hour.

But in that last hour before his dose, his blood pressure did improve.

And it has.

Every. Single. Time.

So far he has not missed one dose.

One of his nurses said and I quote, "It's really miraculous how he just turns it around. And at the right time."


I think we all know who the HE is that keeps turning things around.  Today my man passed the halfway mark for the 10 that we are hoping for.   Thanks to many prayers and a little cocktail of medications, he has not experienced any insomnia.

A Few Prayer Requests

He had this last week off for rest.

8 days off to get his body ready for the next round.

It wasn't exactly a week of rest.

Those side effects he wasn't experiencing so much at the hospital?

They came this week of rest.

Nausea.

Swelling.

Shortness of breath.

Body rash.

Hallucinations.

Insomnia.

Insomnia.

Insomnia.

It was anything but restful.

To my man's army of prayer warriors, I have a few specific prayer requests.....
Pray he experiences no insomnia at the hospital.  His body needs rest.
Please pray for strength.....both mentally and physically.
Please pray for 10.  We want at least 10 doses this week.  
Thank you.

One is Done

Week one is officially complete.

Doses 10 and on were absolute misery for my man.

But he pulled it off.

I knew he would.

12 out of 14 doses.

He now has a week off. He'll check back in on March 10th to do it all over again.  I am beyond grateful to those of you who covered my man, family and me in prayer.  As ugly as this week was, I have never felt more loved, supported or encouraged.  Thank you, friends.  And for the first time in a long time, my heart has hope.

10

She turns ten today. 

At 3 feet 8 inches tall and 43 pounds, she is the tiniest ten year old I've ever known.

Her size is the only thing small about her.

Everything else about her is large. 

Her smile.

Her stubbornness. 

Her self confidence. 

Her love for hip hop dance.

Her fierceness.

Her eagerness to learn.

Her I can do anything attitude.

Her adventurous spirit.

Her heart for her daddy and I.....although, I think her daddy gets more of her heart than I do and that's okay.

And it's that large heart of hers that that amazes me.

Her first almost 9 years of life she was an orphan.

No mama of her own.

I wondered how it would be she would learn to love.

I underestimated the size of her heart.

She let me in.

She let me love her.

And she loves me back.

Happy Birthday to 

My Oh So Larger than Life
Noelle Hope XiaoXu

The Halfway Mark

The plan calls for 14 doses.

Due to the intense side effects it is not uncommon for a doctor to decide that it is best for a patient to skip a dose or two.

The average patient will receive 7-12 doses.

A small celebration took place this morning as he passed the halfway mark with his 8th dose...and with NO skipped doses might I add.

According to his doctors my man is doing amazingly well.  They are impressed at how well his body is handling the medication.  By now most patients would have had a few doses skipped.  As the days and doses progress so does his discomfort but he is hanging in there like the champ I know and love.

Room 16

He got assigned room 16.

Room 16 is at the very end of the hallway

It's small.

It faces north.

The view leaves much to be desired.

It overlooks a transit center, a parking garage and medical building rooftops.

But of all the rooms he got this one.

As we entered the floor a flood of memories and emotions unloaded on me.

I couldn't stop the tears as we were lead down the hall.

Just 10 months ago my mom was here fighting her own battle.

She fought her fight in room 16.

She won.

In the early darkness of this morning he got his first dose towards winning his.

Yesterday was a hurry up and wait kind of day.  He had several procedures, labs and prep appointments  that went well into the afternoon. He got his first dose at 1:03 am this morning. 

At The Plate

February 26th.

A Tuesday.

He did not have any symptoms.  It was just a routine check due to family history.

The doctor introduced himself even though we had met 5 years ago at his last appointment.

Once the introductions were done, he got right down to business.  His exact words, "I don't like what I see. He's got a tumor the size of a lime in his colon."

And just like that, life as we knew it had changed.

If it had only been colon cancer we wouldn't be where we are today.  Life this last year would have been so different.

A full body scan was ordered and the second tumor was found.

March 7th.

A Thursday.

Tumor on his left kidney.

I could hear the sense of  urgency in the doctor's voice when he called with the results.  I soon learned why.  It wasn't that the colon cancer had spread.  It was a separate cancer, kidney cancer.

Kidney cancer is aggressive and kidney cancer is unpredictable.

It has certainly lived up to its reputation.

August 4th.

A Sunday.

Tumor in his spine.

November 18th.

A Monday.

Kidney cancer in a lymph node.

January 14th.

A Tuesday.

Tumors in his left lung.  Tumors with an s.

Enter Interleukin-2.

IL-2 is his best chance at trying to beat kidney cancer.

His doctor explained what the chances of IL-2 working are.

"When you go on IL-2 it's like playing baseball.  Only you get one chance at bat and here's the deal, when you get up to the plate, you have to hit a home run."

Baseball.

If there is one thing my man knows, it's baseball.   From the ages of nine to eighteen baseball was pretty much his life.  He ate, slept and breathed baseball.  He was even a bit of a superstar back in the day.

He knows what the chances are of hitting a home run with only one time at bat.  Very slim.

But, it has been done.  He told me about Kirk Gibson in the 1988 World Series.  And Scott Hatteburg and Derek Jeter's big hits.  My man says to me, "It's been done.  Why not me?"

February 24th.

A Monday.

My man will step up to the plate.


Daniel will be in the hospital for five days, one week off and then back for five days.  Four to six weeks later he will have another body scan to determine if he hit that home run.  Home run meaning if  the tumors are the same size or smaller.  In the event they are, he will go in for another round.  If the tumors are still growing after treatment we will meet with his oncology team to discuss possible alternative treatments.