What a day!

Every night, I go to bed and have convinced myself that I can not do this one more day.

Every morning, I wake up and manage to do this one more day.  Honestly, today has done me in.   The idea of trying to work full time while taking care of three sick kids is becoming a joke...a sick joke, a bad dream.

This morning, Sam and I left early to get to Salt Lake for his follow up Oncology appointment from his inpatient stay and bone marrow biopsy two weeks ago.  Shelbie was suppose to come because her bone marrow biopsy is in 5 hours...but as is customary for us, nothing quite goes as planned.  To make matters worse, there have been tornado warnings and severe thunder storm warnings at home so she was dealing with that, all alone.  That only added to my stress.   We have a security system and it patches in warnings and alerts so all afternoon, sirens were going off in the house to warn of the crazy weather.  It really is a little unnerving.


She had booked some family pictures quite some time ago and they were happening today.  She couldn't move them to a different day because families had planned around high school graduations happening in the area.  So, Sam and I came down, did 4 hours of oncology clinic, left immediately after and drove home to get Shelbie, and with a 10 min. break, turned around and drove back to Salt Lake.  That's nearly 12 hours of driving time!! Ugh...I'm so tired.  Sam had to be back to work so I really had no other choice but to do it this way.  Originally, he was going to bring his own car and drive back himself.

Sam's appointment was not especially good news.  His liver is struggling again!  I couldn't believe it. Sam also had a pretty loud murmur in his heart which was surprising.  Our oncologist had met with our Immunologist and he agreed that Sam needs to be on weekly plasma transfusions.  He has a few things going on that aren't looking good.  His immune markers are very low so that alone is reason to start.  I did learn that when you have any sort of device implanted, like a pacemaker, your risk for serious infection increases a great deal.  So, when Sam was running that high fever and his counts tanked, part of their worry was not only sepsis but that the infection they were hunting would settle around the pacemaker.  If that were to have happened, it would be very serious and they would likely have to pull the pacemaker.  Thankfully, that didn't happen.

They have still not been able to find any reason for the fevers so they are going with a neutropenic fever.  The thought is still an autoimmune issue resulting from his CVID but that doesn't explain the whole picture.  I saw the same pattern with Shelbie though, where counts would rise temporarily with plasma. Sam's counts went up with the Neupogen and IVIG but they are back down again and his red cells are even lower than they were two weeks ago at the time of his admission.  This is very concerning to our doctor.  The plan is to follow up with a CBC and metabolic panel in 4 weeks.  If his counts are still low, or lower, Sam will have another bone marrow biopsy right away.  The Pathologist and our doctor are concerned that Samuel has Aplastic Anemia or bone marrow failure.  I saw that mentioned in the preliminary marrow results but didn't invest much worry into that.  Our doctor explained that his marrow had diminished cell growth in the white cells and red cells.  His platelets were back up this week, at 200 which is awesome.

Between Sam's poorly functioning liver and his low hemoglobin, I understand now why he is so tired all of the time.  I'm still processing this.  I haven't had a lot of time to think.  My boss has been waiting on some plans for a twin home I've been working on for him.  He has a crew showing up at 7:30 in the morning to start digging and I still haven't finished the plans...so, I'm madly trying to finish those before 7:30 am.

Hoping and praying Shelbie does alright for her bone marrow biopsy in a few hours and I survive this week!


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