Famous Last Words

Too bad I have this bad habit of speaking too soon!  I wasn't too worried about our appointments this week...

I wasn't expecting any earth shattering news at Hematology/Oncology yesterday.  I knew we might be looking at some further testing for Shelbie but I thought the boys would sail through the appointment without incident.  The last bone marrow biopsy the kids had was the Fall of 2016.  We are suppose to do them yearly but considering 2017 was a shambles in other areas of their health, I didn't think it would hurt to hold off for a bit.  We've actually had one of the healthiest winters.  It's been at least 8 months since our last Pneumonia.

Sam passed all his tests with flying colors...well, flying colors as in, he's okay.  His counts are trending down from when we started with our Salt Lake Team three years ago.  His white count is only 2.3 which is pretty low but I have seen him lower.  The cells he does have, look good microscopically.  We have decided to wait another year before his next bone marrow biopsy!  I feel okay with that plan right now.  Of course, if things change, we will biopsy him.  We have never gone three years between biopsies so this is new for us.

Well, Shelbie has a blockage of some sort in her right leg.  It's unclear if her enlarged lymph nodes are getting bigger and pressing on the veins and arteries leading to her right leg, or if there is a venous blockage.  She does have some larger lymph nodes showing up so we will get the PET scan as soon as insurance clears that.  Our doctor is one of the few Hematologists at Huntsman that does a finger stick prior to the appointment so he can look at the blood himself, under the microscope.   Shelbie's smear came back with some questionable white cells.  Not a lot but enough that he wants to keep a close watch on things. We will hold off on her bone marrow biopsy as well. 

Spencer is a different story and one I wasn't expecting. He had a fever! I had no idea til the nurse told us. His blood smear showed more abnormal cells than the doctor is comfortable with and he is concerned.  Here's the deal, when abnormal cells start showing up in the peripheral blood, it usually means there are many more abnormalities in the bone marrow.  It could be any number of things from Leukemia to Myelodysplasia or something else.  Our doctor wants to get the biopsy scheduled for Spencer, as soon as possible.

Sadly, it doesn't end there.  Our doctor feels strongly that we need to investigate Carcinoid Syndrome for Spencer.  He is the 4 th doctor who brings up the possibility of cancer for Spencer in the small bowel and I trust him the most.  He was pretty upset with how the GI department is treating us.  He thinks it is ridiculous that they are dragging their feet on things with Spencer.  So, he is ordering a PET scan for Spencer as well. 

He was telling us that just last week, he ordered a specialized PET scan for another patient he has who they also suspect Carcinoid Syndrome.  What are the odds of that?  The PET scan to diagnose that is relatively new.  I couldn't help but think that God has been in these details.  He explained to me a lot more about carcinoma cancer and how it differs from regular cancer and why it's so hard to diagnose.   So, I am praying that our insurance company will expedite the approval process for the bone marrow biopsy and the PET scan. 

As we were discussing the GI issues, he offered to go to bat for me and get the kids into a good GI doc.  I hope he can but I admitted that I thought maybe they just didn't like me and didn't want to deal with me.  He doesn't think that is the issue at all so we'll see how far he can get with things.   I told him they also don't want to deal with DC but again he said, "They don't have to deal with DC.  They are dealing with people with GI problems."  Agreed...try telling the GI department that.

Anyways, I was really caught off guard yesterday.  We all were.  Spencer seemed tough and handled the news with good humor but I can't help but worry about him. 

Tonight, the news is settling in and I'm worried.  Really worried. It's been a hard day and I'm sure the days to come will be filled with more worry than I care to think about.  Anyways, this is enough for one day.


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