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.

Sam was watching a large group of guys hiking the hills behind us.  The tubes and pumps are growing ever larger in an attempt to make him better.
 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 fever.  This is what I really don't understand but she said if it was still 103 after an hour without meds, then they would draw another set of blood cultures.  If it was dropping at all, they would assume its a neutropenic fever.  She suspected it was a neutropenic fever because looking back over the past 4 days, there is a definite pattern to the spikes.   Sure enough, at 60 minutes, it was coming down.  His blood pressure was also coming down and his heart rate.

I don't know where we go from here...The bone marrow biopsy won't be back for another week or so.  Unless they know what they are treating, it's very hard for them to just let us leave, especially if he is still fevering.  I'm kind of pushing to leave as long as our local doctors understand the protocol for taking care of him back home.  I'm a little worried that this will change the whole game plan from immunology and he will need to start weekly plasma transfusions.

Shelbie and Spencer Facetimed Sam this afternoon and tonight, they had a box of chocolate chip cookies delivered to his room.  It was so helpful, it came at the perfect time when Sam was really struggling. 



To add to our worry today, we had to make some serious decisions.  The Attending wanted to start  Neupogen and IVIG to replace Sam's plasma.  The Neupogen stimulates the bone marrow to produce more cells.  This is risky not knowing exactly what we are dealing with because not only does it increase the good cells, it increases the bad cells too.  If we do nothing, who knows how much worse things will get because his marrow is so suppressed.   We chose to do the new medications. 

As is customary, Sam had a bad reaction to the IVIG just like Shelbie use to get, so they had to slow the rate way down but he was still so miserable.  It's hard to see him suffer through these high fevers without any relief and then all at once, he's drenched in sweat and we have to change his sheets, his clothes...it's miserable to watch.

They want Sam walking as much as possible but he's not allowed outside because of all the pollen, dust, and construction particles...and he's not allowed to be in the sun.  So, we wander the hospital.

This picture is worth a thousand words.  Sam's getting pretty worried and discouraged. 


I'm understanding more of God's timing for this situation.  I know that Sam is where he needs to be.  It's just so hard that we haven't had a decent break in our trials in over a year.  Looking ahead, I still haven't processed the idea that Shelbie may be starting chemotherapy again just to try to slow down her granuloma disease...and she still needs her bone marrow biopsy that was suppose to happen Friday...but again, this issue with Sam took precedence. The problems are stacking up for us and that is overwhelming.  For now...we just want to go home.

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