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Showing posts from May, 2018

Post Trauma

The past few days have been the typical, post trauma kind of days.  I find I do well throughout the crisis but not so well in the days afterwards when things have settled down somewhat. 

Sam is doing okay, although extremely tired.  We headed in a couple of days ago for another CBC as instructed by the Attending doc, for follow up.  All of his counts have dropped significantly again.  Not quite as bad as they were when he was admitted but they are nowhere close to 5000 which was the big bump he achieved with Neupogen and IVIG.  His white count is back down to 2 and his absolute neutrophil count just below 1000. 

Some of his bone marrow reports trickled in throughout the weekend as well as most of the tests they ran while he was inpatient.  I can't even imagine what this hospital stay cost...there were some incredibly expensive blood tests.  A solid week later, still nothing has cultured. 

There have been a few shocking results.  His T-Cells are so, so low.  When I saw this, I imme…

The Verdict

I received an unexpected call from our Immunologist late this afternoon.  He is such a compassionate man and has had so much concern for Samuel and this situation.  He has been able to review some additional test results and he has diagnosed Sam with Autoimmune Disease.  Specifically Autoimmune Neutropenia.

This is in line with CVID- Common Variable Immune Deficiency, the same disease that Shelbie has.  Sam is presenting in much the same way.  Shelbie's journey in this disease started with Immune Thrombocytopenia Purpura and she couldn't keep her platelets above 1.  For Sam, it appears that the antibodies are attacking all of his cell lines but especially the neutrophils.  His counts were showing no production of new white cells and one of the markers for platelet destruction continues to be high.  They know his marrow is capable of producing the cells since he got an amazing response with Neupogen which is good news.

He is also depleted in the immunoglobulins IgG and IgM.  wh…

No Change

Well, there is absolutely no change in Samuel's condition.  He can barely walk around the house without being completely exhausted.  The hives resolved but what is left is skin that looks sunburned and it's really itchy, but not raised like hives.  Benedryl does nothing for it, at least alone, so I added Zyrtec and Pepsid to the mix since they all work on different histamines.   That mix seemed to help. This morning, he woke up with a significant tremor in his hands. He is still running a low grade fever. Sam is a completely different kid from just 8 days ago.

I spent the better part of the afternoon coordinating appointments for Sam and Shelbie.  They will both see the Oncologist again next Thursday and Shelbie will have her biopsy on Friday as well as the last of the carcinoid syndrome testing. 

Over the few days we were inpatient, I kept reviewing the past 6 weeks with the doctors.  The acute kidney disease, high blood pressure, then high bilirubin.  I have a hard time thin…

The Black Sheep

We made it home tonight.  We actually got word around noon that Sam would be released but it took much longer before we actually walked out of the hospital.  We weren't even 15 minutes down the road and Sam broke out into massive hives.  They started on his stomach and then starting winding their way up and around his body.  I wasn't about to deal with throat issues from hives so I quickly found a pharmacy to drowned him in Benedryl.  It kept them from spreading but he is still having issues tonight. 

And...guess who is running a fever tonight...Ya, Sam.  I know he's not out of the woods but still.

The reason they let us leave, is because the Neupogen raised his neutrophils to 5000!  When the doctor told me that, I was shocked.  I actually said, "Is that even normal?  Isn't that way too high?"

Everyone in the room started laughing..."No, it's not too high, that is normal."
"Normal?  Never in my life, if I combined the neutrophil count of al…

Huntsman Day 3

There has not been a lot of change to report which is discouraging.  Three days on antibiotics and still spiking fevers. Tonight, he is still bouncing up to 103 degrees!  This morning, his counts took another dive, except his platelets, they are back up to 112,000.

 They have successfully ruled out viruses, influenza of any kind, and pneumonia.  Blood cultures are still negative as well as fungi cultures.  The attending physician and her team of hematologists are perplexed.  With all the typical causes of infection not found, they start looking at the bigger, more serious things like cancer.  Specifically, Leukemia and Lymphoma.

This stupid 'L' word is following us around like a stalker.

It's fair to say I am completely out of my element.  I know nothing about serious Neutropenia.   None of my kids have ever before had such low counts.  Tonight Sam spiked a fever of 103 and they wouldn't give him Tylenol for 60 minutes so they could determine if it was a neutropenic fe…

Huntsman Day 2

I'm still having a really hard time figuring out how we got from a regular clinic check up to this...

Day 2 inpatient and there really isn't much improvement to speak of. Sam's white count is just at 1 and his neutrophils crept up to 500 but his fever also stayed at 103 all day.  His platelets dropped to 90 but have made a slight bounce tonight. Tonight he has a pounding headache and is really uncomfortable.

 We've had doctors coming and going steadily all day.  I bet we've seen at least 9 different doctors and we haven't known a single one and each one zeros in on one issue and beats it to death.  One of the Residents came in and she was dressed horribly.  I don't know why that makes a difference to me but it does.  She looked like she just finished cleaning her basement, just so unprofessional and couldn't keep her attention on Sam but was intrigued with some commercial on TV.  In fact, she kept saying, "Sorry, that commercial is interesting.&qu…

Blindsided

Last night, Sam spiked a fever and developed a headache. I was just headed to bed since we had to be up at 4 am to drive to Salt Lake. I gave him meds and went to bed. He seemed better this morning so off we went to our appointment.

Shelbie: he is pretty concerned about the new tumors and the old tumors getting bigger. He agrees that the risk to operate is not worth it. He would like to start two chemotherapy drugs in an attempt to slow the growth of the granulomas. It would be a short trial, maybe 3 months.  He wants to make sure our oncologist is on board. He also told Shelbie that she will never be able to stop the plasma transfusions. That didn’t go over very well with Shelbie. Since she had meningitis, he wants to give her body a 2 week break from the plasma since it can irritate the brain lining.  We will wait for him and our oncologist to create a care plan. 
Sam: the doctor is also concerned with the number of times Sam is sick but he doesn’t want to start transfusions too soo…

Truth Hurts

It's been such an emotional several days, we are all sort of feeling an adrenaline hangover and having a hard time finding our footing again.

Saturday night at the hospital was probably the hardest night.  We had a hard talk with our Doctor.  I really feel lost as to how to manage things.  I feel like all I do is take people for doctor appointments and doctors feel lost and overwhelmed, I feel like I'm losing my mind and the kids leave without a plan or hope to ever feel better.  Sometimes, I think people just look at me like I'm crazy or making all this up.  I spend the better part of each day second guessing myself and questioning my ability to take care of my kids anymore.

Our heart to heart with the doctor was a good chance to understand his perspective and to get some good advice.  I trust our docs and their feedback was valuable but I'm not going to lie, it was hard to hear but it needed to be said and heard.

For him and the Hospitalist to see the MRI for themsel…

Mother's Day and Birthdays

Shelbie was able to come home from the hospital on Sunday afternoon.  It took me all afternoon to get her comfortable, pick up her prescriptions and get a week's worth of laundry done.

When we got home, Sam had bought us both a bouquet of flowers for Mother's Day and he helped me get things back in order.  He and I ate dinner in the backyard with the late afternoon sun.  I was able to talk to Spencer and he sent me a really nice text and a video.   It was just good to be home and enjoy a little quiet and order.

This is the video that Spencer sent me.  I stood in the laundry room, sobbing!


Monday, was Samuel's birthday!! 20 years old for this baby of mine.  It seems unreal that he could be so old already.  Since I had planned to do his birthday shopping last week, I took the day off from work and scrambled around trying to make sure he would have a day that made him feel special and loved.  I had to make some revisions because of time constraints so no cool cake this year. …

Faith and Will

I have more time than I need, these days, to be frustrated and irritated and just plain weary and tired. 

When I can't think straight enough to work anymore, while sitting in this stale hospital room, I think about miracles and faith...and God's will.

From healing the blind, to raising the dead, Christ healed them and with each miraculous healing, he made a point to remind them that it was their faith that made them whole again.  Christ could calm a storm, walk on water, transform water into wine, feed thousands with a few measly loaves of bread and fish and wither a tree in the blink of an eye.  Over and over, he took his disciples, more than anyone else, on an adventure of faith. 

If you read about the miracles in order of how he performed them, you can see a pattern that applies to life with us today.  From the moment of birth, we embark on a journey of transformation, like the water to wine miracle, the first miracle Christ performed.  Though the process is much more tedio…

The days are long

I don't know if we are going to get out of here today or not.  I've had high hopes, our doctor has had high hopes.  Until Shelbie can be completely independent of the IV meds, she can't go home.  She had a really good night, like a really good night! We actually got a 4 hour stretch of sleep but she still can't manage the pain with oral meds alone.

She's been confined to the room because of infection restrictions and these walls are closing in on us.  I really think she could feel better if I could get her up and walking and seeing the blossoming trees.  We have a big beautiful window but it looks out on the roof top of the hospital and the combination of rocks and HVAC equipment is lacking in the Zen department.  The longer we have to stay here, the more I start feeling we will never get back to normal...but then I roll my eyes to myself and remember that normal was pretty much gone a few months ago. 

I know that until I can learn to live in the chaos, I will nev…

More of the same

Today was more of the same kind of stuff.   They decided to do some more MRI's because the pain is radiating down her spine even more.  Of course the hospitalist was pretty concerned with what he saw because he saw, for the first time, all the tumors she has.  There are many close to her spine so he thinks these already large lymph nodes in addition to the rest of this mess, is certainly not helping the situation.  His comment to me was..."You have a pretty strong case for Lymphoma.  These granulomas and lymph nodes are not tiny things."

I just don't know.  I feel like we are stuck. Every doctor we have has a different opinion of how to move ahead and right at the moment...I have no direction and no clue how to move forward.  It doesn't help that I haven't slept more than 6 or 7 hours since Monday night. I was up most of last night because Shelbie wasn't at all comfortable.  She had drenching night sweats all night long and a low grade fever off and on to…

Real Life

"Real Life.  Messy.  What it means depends on how you look at it. The only thing you've got to do is FIND A WAY"
Patrick Ness- More Than This
All. Day. Long.  I've had to consciously look at things differently. 
At 11:15 this morning (Wednesday), it was September 10, 2002 in my mind, with a clarity and urgency I have never experienced before.  In the very same hospital, fear paralyzed me, my legs gave way and I fell into the wall and slid to the floor in a puddle of frantic tears. On the other side of that door,  my little 9 year old, with red on the head, seized uncontrollably.  He was undergoing a spinal tap and all I could think was that it was the beginning of the end for him. 
What followed was a life flight trip to Boise and 5 weeks in the hospital. 
Today, Shelbie was on the other side of the door, undergoing a spinal tap for suspected Meningitis.  It was surprising how fast it all happened.  Her doctor appointment was at 10:20 and by 10:40, we were on our wa…

Name that kid

I was thinking maybe we should have a little contest...Name that kid...

You guess what kid is in the hospital this week and...if you guess the hospital then you get bonus points!  I'm not sure what you win yet but I'll think it over.

Tonight, I am blogging from Madison Memorial with Shelbie this week!  It's a full house up here tonight but props to the ER doc and our amazing nurse for getting down to business and getting her some relief. 



Her heart rate spiked to 135 and stayed there and her blood pressure is 130/93 so something is up.  She's been running her usual fever too but probably unrelated.  So, here I sit.  She is finally sleeping and things are calming down.

Yesterday, we had a pretty good day.  Everyone was in good spirits and it was as if nothing new was happening.  Today, it's been the complete opposite.  Sam went to work this morning as usual and one of the kids he works with came up to him and said, "Hey man, are you okay? You don't look oka…

Wandering. Complaining...

Today in Sunday School, the lesson continued on the Children of Israel and their life, once they made it through the dry bed miracle of the Red Sea that was mercifully provided for them.   The conversation was about how they kept complaining, many couldn't do the simple things that were required of them...like the 'look and live' kinds of simple things.  They wished for the 'easier' times when they were in bondage, at least they had food.  There's always an "At Least" we can make mention of.  They complained at every turn as if no miracle had been witnessed along their journey.

It's so easy to read their story and assume that they were simply, ungrateful people because of their murmuring.  How could God in His wisdom choose these people to be the CHOSEN ones?  It takes no effort to pick apart the way they handled their wandering trials in the desert...the trials that lasted not just a few days...but many, many years!  Years of struggle.  YEARS!!  …

Questions and Answers

I got the long awaited call this morning.  Finally!

Let me start by saying I am so over my life.

Nothing, and by nothing, I mean NOTHING is ever simple or easy or expected.  Nothing.  Nothing at all.  Never, do we have an ordinary day, an ordinary experience. Never.  This may actually be the last post I ever write. I feel like this blog is losing credibility because there is no way, half the things I write can possibly be true, let alone happen to one family!  It's impossible, yet here we are.  I feel like I spend everyday, just clawing my way to the end of it, only to experience shear exhaustion and do it again the next day..emotionally, physically, and mentally.  It's ridiculous.

Let's start with Spencer.  He has some areas of concern- his thyroid, parathyroid and liver.  They are enlarged and inflamed and his parathyroid has a few tumors growing.  His thyroid and parathyroid seem to be functioning okay, his calcium levels are in check so it will be a future of surveilla…

While We Wait

Still waiting.  If there was a soundtrack for my life it would be that terrible music you hear when a government agency puts you on a 'brief hold'. 

We are still on a brief hold...just waiting for the worst news of my life.  Okay, that might be an exaggeration.  Maybe it will be fine and I'm just over reacting.  But fine never took two weeks or more of deliberation.

At any rate, let me ramble whilst we wait...

On Sunday, I was talking to a church leader in my Sunday School class.  He is always genuine in our brief exchanges of conversation and his words are inspirational.  He and his wife are no strangers to difficult trials.  He asked if he could send me something he wrote when his father was gravely ill.  Of course, I was looking forward to receiving it.

I have read it over and over, literally over 15 times. When I read it, it feels like it poured from his thoughts a stream of consciousness, effortless poetic words about God, "...our great and relentless Pedagogue&q…

Remember What You Know

We just survived the longest weekend in the history of weekends. 
Still no news from Oncology but that may not be the most shocking news of all in the past 12 hours. 
Spencer got in another car accident!!  I'm not even kidding.  Not one bit.  It was the call of shame I had to make to my insurance company..."Hey, ya know that really nice rental car you provided for my son?  The brand new Toyota Camry?  The beautiful navy blue that sparkled?  Ya, that one...the front bumper might be missing and the doors...they aren't so sparkly anymore."  
Oh. My. Gosh...What is happening to my life? 
Spencer was on his way to return the rental car and pick up his 'new' car but he made one stop at the bank to get the money for the car.  While the car was parked, a man, not paying attention in his big work truck, turned too sharp and nailed the rental.  Tore the front bumper off and scraped his truck down the side of the car.   
He didn't speak good English but Spencer was …