Still here, sorry for the long delay. Remember that phrase about life happening? It's been happening all over the place the last two weeks :)
Jake had an inpatient stay on August 25-26. It was uneventful, which is something I aspire to greatly these days. He did throw up right after they'd disconnected his IV to let us go home, so they hooked him back up and gave him an extra dose of anti-nausea drugs. He slept for six solid hours when we got home--I don't think he even rolled over. In fact, I kept going in to make sure he was still breathing. Haven't done that in many years.
And then the next morning, he got up and went to school. Made it the whole day. How can I not be proud of a kid like that?
We've also had a clinic visit since my last post, so that leaves one more clinic visit on Tuesday of this week. I'm not sure I quite grasp that yet. But I'm looking forward to wrapping my mind around the concept.
All has not been perfect. Jacob's body has been put through so much in eight months that it's no surprise his blood counts have trended downward and are getting harder to raise in between inpatient stays. For the last two weeks we've hovered on the edge of a transfusion of packed red blood cells because of his low hematocrit counts. And his ANC has been consistently low this last month. It's the measure of his body's ability to fight an infection, and Jake has been within normal range much of his treatment time. But now, even with the daily shots of neupogen, the ANC isn't rebounding much.
Which led us to Wednesday of last week.
Jake come home from school complaining about how cold it had been and how he'd been shaking throughout the day.
Then he took his temperature--101.5.
In the 30 minutes it took me to talk with the clinic and the oncologist and make arrangements to take Jake to our local ER, his temp went up almost a full degree.
You know how I walk around pretty normal and feel optimistic most of the time? I'm here to tell you that the fear is just a number away and that rising temperature set off every fearful alarm bell I have.
It was a long drive to the ER.
(By the way, I've decided this is the only way to arrive in an ER--when an oncologist has called ahead and said, "You've got a kid coming in who is immune supressed and is running a fever." No waiting around for us. And no big room with curtains between the beds--Jake got his own room with a door and a TV. The only way to go.)
I had packed our hospital bag, fully expecting we would end up at Primary Children's for several days. (Based on the fact that his ANC the day before had been only 800--1500 is the low end of normal.) But we were there only two hours and then came home. His temperature was down to 100 degrees even and didn't change over the two hours, his blood cultures and urinalysis were normal, the chest x-ray was clear, and the blood counts showed that his ANC had come up to 1500.
So I bought him pizza on the way home and kept checking his temperature through the night. By morning it was normal and he went to school for the afternoon.
We are a gladsome family.
Hope you are all the same.