August, Part II

Our August continued…

If you missed part I, you can catch up here.

August 18:  “Last night, Chase suddenly started shaking (as if he had the chills) and within half an hour, his temperature went from 99.1 to 102.1.  It was a scary moment for our family.  He was triaged at a local hospital and was released around midnight after an antibiotic since his blood levels were so stable.  We were able to come home and sleep for a few hours before both the local hospital and Lurie started calling…Chase’s blood cultures had grown a bacteria and quickly.  He was admitted to Lurie several hours ago and we are waiting to determine the plan for treatment.  Because of this, his port surgery (scheduled for tomorrow morning) will probably have to wait.  We are thankful to be here and we know this is exactly where we are supposed to be and Chase is overall in a pretty cheerful mood, but we are all experiencing a certain level of “burnout” from all the back and forth and Bob and I are very concerned about all the infections and what role, as his caregivers, we might be playing in them.  Praying for wisdom all around.”

This particular fever and admission were especially difficult as we were still at home and with the other kids when the worst of it really hit him.  Chase has never been that bad at home before and they were very afraid.  For them, the last time they witnessed Chase shaking, it was a seizure and it changed their lives forever.  We were able to talk about it with them and cry a little too.  That’s one of the reasons Bob took the above picture – we needed them to see Chase after his dose of Tylenol and see him sitting up and being Chase again.  We didn’t want their last memory of that night to be one of him shaking uncontrollably.

On August 21, after days of waiting for negative cultures and many, many discusssions of what could be causing the continued infections, we were able to bring Chase home again on antibiotics.

At this time, there is no clear reason for his multiple infections, but the constant use of his line (with his IV nutrition) and the exhaustion of his body after a year of chemo are considered to play a big part.  Whatever the cause, we were very blessed by a almost a week at home before going back – this time; a planned visit.

On Thursday, August 29, Chase went into the OR for his 8th central line.  Eight.  During the surgery, the doctors removed the PICC line in his arm and did a spinal tap to check his spinal fluid for cancer cells.  After 2+ hours in surgery, we learned that there had been some slight problems with the new port, and the attending surgeon later told us that she had instructed the team to stay in the room – that nobody left until the port was fixed because Chase really needed this line.  We were so thankful for her persistence and detail as a lack of resolution would have meant Chase going back into surgery the next morning to repair the damage.

After surgery, Chase was admitted to the hospital for chemo – his first dose since the end of July – the longest chemo break he’s had since radiation ended.  He successfully completed the round and as the last hours of August faded into September; began the fighting and healing from the poison with a five hour packed red blood cell transfusion.

And so ended August.

Moment by moment.

“But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and ot be weary; they shall walk and not faint.”  Isaiah 40:31