The 1040 Window

Super Med-Sleuth Natalie was looking over Aaron’s blood lab reports and noted his blood sugar was very high (a by-product of steroids). After a few hours and no order of insulin materialized, she asked for another a glucose test. A second test measured a really high glucose Level (401mg/dl)! Insulin was given, and over the next several hours Aaron’s blood levels returned to normal. The Team is not happy with a certain intern in charge of reading Aaron’s lab reports. Maybe, Natalie should start billing for her services (at Dr.W’s rate!)

LESSON: When you’re in the hospital, bring at least one really smart relative with you.(Or you could hire Natalie at the family rate? Ken costs extra.)

After some discussion, the Team thinks it best Aaron stay a few more days so they can wean him off steroids slowly. By midweek he will be clear of them and we can finally see if the fevers are gone.

Prayer for attentive Doctors! (Doctor Paquette can’t be here all the time!)

And thank God for Aaron’s increasing immune system!

Today was quiet. The steroids for Aaron’s rash have one nice side effect, he feels a little perkier. It will take two days for the steroids to wear off, so they could be masking a fever meanwhile, and hiding an infection. If Aaron’s temperature is normal Sunday, we get to go across the street.

Pray that happens. Doctor Paquette said, “You have to get out here before you catch something!”

Yesterday, a certain doctor, henceforth called Dr.W, came to check on Aaron. This fellow has been around, off and on, since last May. What makes him especially memorable is that his five minute visits, even after insurance, have been costing Aaron $350 out of pocket. He’s a pleasant fellow, but not that charming. Finally, Thursday morning, when Aaron caught sight of Dr.W entering his room, he said, “I’m fine! I’m fine! Don’t worry about me!”

This was a bit off putting for Dr.W. He asked, “What’s wrong?”

“I can’t afford you!” answered Aaron.

After a short discussion, Dr. W assured Aaron that those previous billings were a mistake and he would look into it. So, there’s a good chance of a refund. Plus, Aaron had him sign something scribbled to that effect.

A hospital is no place to be shy__in lots of ways!

The Fever Mystery continues. Yesterday evening when I reported, finally, a lack of fever, I wasn’t aware that Aaron had already received his first dose of steroids for his rash. Since steroids can mask a fever, we still don’t know whether we’re dealing with an infection or the Neupogen Effect ( or, as I call it, Natalie’s Clue.) Goodness!

Remember the Scan Wars? The Team almost scored one over Doctor Paquette. This is what happened:  The Team got their way and Aaron was wheeled downstairs where a tech started drawing blood. The Team intended to take that blood, filter out some stems cells, mark them in some scan-friendly manner, put them back in Aaron, and watch if they hightailed to some hidden source of infection. But none of that happened. Trying to draw the necessary blood proved too painful for Aaron. See Aaron’s OUCH blog. Concerning another attempt at this Stem Cell Scan: Doctor Paquette said, “Just say ‘No!’”

As always, I appreciate your prayers, Love, and an occasional chocolate. 

I was brought down to nuclear medicine, just a bit ago, for what we thought was one of the scans.  Things were all mixed up and as it turned out, I was just going down to get a big load of blood drawn, in preparation for a scan.  Well, the technician went to poke me, and I even engrossed myself in an R/C car magazine (one of my favorite hobbies) to take my mind away, but, “YEEEEEOHHHHH!!!”  The pain was excruciating.  It was all I could to muffle my cries of pain, my magazine dropping, my eyes closing, my mind going blank, just circling in darkness, as he probed that needle around trying to get into a vein good.  He did not.  Not a good connection, anyway, and still very, very, very painful.  So he pulled the needle out.  It was just like the initial pain, only with the promise of being short and ending with relief.  Sweet relief.  For quite some time, I just lay there, crying, my mind spinning and trying to get control of my breathing.  I was unable to let him try again, though he really wanted to.

But praise God!  This is the first time, this entire hospital stay, I have had to go through anything so painful.  God bless you all, so much.

Though the mystery fevers have continued much to our dismay, Natalie’s Clue (the neupogen theory) still holds water, but the docs want to cover all their bases so now we have entered the Scan Wars. The Team (this month’s rotating herd of doctors that visit each morning) and Doctor Paquette, his oncologist, both want scans done on Aaron to look for a possible hidden source of infection, but disagree on the type of scan.  Tomorrow we’ll see who wins (I’m betting on Paquette)

HOT OFF THE PRESS:  The nurse just now took Aaron’s temperature: NO FEVER!

First time in four days! Maybe we’re getting there!!!

By the way, remember that rash? It’s still there and actually worse, so opinion is leaning towards, “Looks like Host vs. Graft…plus some petechiae.” (Broken capillaries from low palette count). The rash is really awful looking, but doesn’t bother Aaron too much. They may give him some steroids to beat them back. Pray this remains a mere scuffle between Aaron the Host and his guest Graft.

Praise God there hasn’t been any panic-level issues! (Remember Jan./Feb.!!!)

Of interest: Aaron’s sister, Rose, achieved her Black Belt in Kung Fu San Soo (Karate street fighting) this week-end, so as Aaron recovers in his weakened state, he has a killer body guard!

The docs have been very puzzled about Aaron’s high fevers. They’ve been running tests since Saturday, and all the cultures have come back negative. They even removed his surgically implanted I.V. ,which was allowing Aaron fewer pokes each day, in case, it was the site of infection.

This morning, as Dr. Paquette pondered these fevers, sweet Natalie, the family Med-Sleuth, asked, “In the blood report, I noticed the phase ‘Toxic Granulation seen’ under the neutrophil count. What does that mean?”

Suddenly Dr. Paquette perked up. “Ah ha! Maybe I do know what’s going on!”

So here is today’s theory, inspired by Natalie’s find: Aaron’s new go-getter white blood cells are attacking one of Aaron’s daily drugs (Neupogen: a drug that mimics a virus in order to simulate more white blood cells, or something like that.) The fever could be the by-product of that battle. This is a very hot theory; all the docs are now looking around, asking, “How come the neupogen wasn’t stopped earlier??”

If this theory is correct, Aaron’s fevers will drop as his blood levels of that drug drop. I hope so; then we can go across the street.

OF INTEREST: Know anyone pregnant? Encourage them to donate their umbilical cord. It is free, no risk to mom or baby, and can save a life. If there’s a history of cancer (or other diseases) among siblings, storage in a cord bank might be recommended by their family doctor. Here’s a sample of pricing: 1yr.=$1,420, 5yrs.=$1,860, 10yrs.=$2320. (And, no, we don’t get a commission.)

Keep praying! Love, the Boydstons

Yesterday, Aaron’s new stem cells officially engrafted.  He is not in the process of engrafting anymore, he has engrafted.  Amazing!  Praise God for this awesome news.  One of the most dangerous parts of doing the stem cell transplant is having Aaron’s body reject the new stem cells.  Before starting the procedure, the biggest concern was “what if Aaron doesn’t engraft?” because there was no backup plan.  There weren’t any other cells to try.  Praise God for faithfully protecting and caring for Aaron. 

Discharge from the hospital, this time, is quite a process.  Usually, the first time the doctors mention discharge, you are out of the hospital in less than 12 hours.  However, because of the complicated medication schedule and his need for eating before leaving, it is taking some time to get discharged over to the Tiverton.  I met the discharge nurse yesterday and actually had to have a meeting about how to care for Aaron when he gets out of the hospital.  She explained that getting out of the hospital and getting through the next few months is just as difficult of a hurdle to get over as what we have just done.  She said with the various doctors appointments, medication schedule and meals, you have a pretty full day everyday.  The only other thing to report is that Aaron’s temperature is running as high as it can without being considered a fever (100.2).  Please, pray that his temperature will return to normal and that it won’t be anything that keeps him in the hospital longer.  :)  Thank you so much for continuing to check in on us and for keeping us in your prayers!

“Therefore, know that the LORD your God, He is God, the faithful God who keeps covenant and mercy for a thousand generations with those who love Him and keep His commandments.”  Deuteronomy 7:9

Quick Update:  Aaron is exhausted.  It is an exhaustion from all the cell rebuilding that is going on, not from a lack of sleep.  He has been miserable and extra untalkative but today he reports feeling a bit better.  Praise God!  His rash, skin and bruises are improving.  He is taking a short walk once a day.  He continues to be on IV nutrition because he only consumes juice by mouth (oh, and like 30 pills a day!).  Because it is the beginning of a new month, we have all new doctors.  God really planned for excellent physicians to be on service during the crucial month of April.  I know that it wasn’t a coincidence that Aaron’s primary oncologist was the attending physcian last month.  We are so grateful for the wisdom that God gives all of the medical staff.  Please, pray that Aaron will be well taken care of by these new doctors and there will not be any conufsion or problems caused by the change in physicians.  His neutrophils (baby white blood cells) are climbing–they are at 400 today, the highest they have been!  God is awesome!  When the neutrophils reach 500, that’s when the doctors want to discharge.  Today, during rounds, the doctors said they were very close to discharging from their standpoint.  The only thing that will keep Aaron in the hospital once the neutrophils reach 500 is being on the IV nutrition.  So, please pray that he will be able to eat soon!  Once Aaron is discharged, we will go across the street to the Tiverton.  Thank you for your love and prayers!

Be joyful in hope, patient in affliction, faithful in prayer.   Romans 12:12

Aaron’s spirits are a bit low today. Though the transplant is going well, I suppose it’s hard to stay in the “big picture”, where everyone is telling you that everything’s going perfect, while you live the small picture, feeling perfectly awful every minute.

 Meanwhile, back to the big picture: The stem cells continue to hold their ground. Praise God.