August, Part I

August has been …interesting.  I actually find it very hard to define.  Chase has been in the hospital more than he’s been out of it and there have been what feel like many complications to an already difficult chemo plan.   I’ve had very little time to blog, but I have had moments to post brief Facebook updates from my phone.

August 3: “Its another ‘How many hours were we home?’ day as we made it four hours out of finishing the final dose of chemo for this cycle before Chase spiked a fever. As I write, we are sitting in the ER waiting for lab results and a plan of action. Chase is doing so, so well right now.  Despite a ridiculously long week of chemo, he’s being so kind and sweet spirited.  That in and of itself is a huge answer to prayer.  More updates soon.”

Within a few hours of this post, we were able to come home as Chase’s vitals and labs were stable, but it didn’t last long…

August 4:  “Chase managed to stay out of the ER for only about 24 hours this time. We got a call yesterday evening (Saturday) that the blood drawn from Friday night had grown a bacteria.  He was finally admitted to the hospital around midnight last night to pursue a course of treatment.  In addition to the medicine that runs over two hours of every six, they did a peripheral blood draw (not from his port) to try and determine if the port is the problem – which could mean surgery to remove/replace the port this week.  Please pray for Chase and for Bob and I as well. Chase is weak and we are weary.” 

“A consensus has been reached and it looks like Chase is facing surgery in the morning (pending surgical clearance and his ECHO results).  For Chase this will be the 7th access surgery and the 15th placement, removal or repair to an access line. Incredibly, he has never purposefully pulled out a line! Slightly overwhelmed by yet another line (as they intend to place a PICC in his arm) and another surgery on this little boy, but Chase just informed me that Grammie, Mommy, Daddy, and Jesus will all be with him and that he will be so brave.”

Saying that we were “slightly overwhelmed” may have been a slight understatement.  As we went Chase into surgery, I wept.  This was absolutely the right decision to remove the infected port, yet somehow, each time I watch our wide-eyed child being wheeled out and hear the words “Don’t worry.  We’ll take good care of him.“, it gets harder, not easier.  Regardless of our emotions in the moment, on Tuesday, August 6, Chase went into surgery and the infected port was removed.

August 7:  “This boy is a force to be reckoned with!  He has been up and very active this morning despite post-surgery soreness, one hand bound in an IV, very low counts, and exhaustion.  I wish I had a picture of Chase, wrapped in his tiger surgery gown, peddling a big wheel tricycle (me pushing the IV pole behind him) bursting through a circle of doctors on rounds and yelling: “Gentlemen, start your engines!!” As of right now, the IV needs to stay in his hand for at least another day while he continues antibiotics and hopefully recovers from chemo.  As early as tomorrow afternoon or sometime Friday, he may go back into surgery to place a PICC line in his arm – which would allow us to go home while he more fully recovers.  One of the hardest moments this morning was his lab draw.  Without a port or central line, they had to stick him with a needle.  This will happen again tomorrow and every other time they need blood until he has another PICC or port.  A necessary evil, but so painful to watch.  He is being so brave and Bob and I watch him growing and maturing in so many ways around all these circumstances.”

During the few days without a central line, Chase couldn’t have his regular nutrition and we could see him becoming increasingly gaunt.  This was hard to watch, but the doctors did everything they could to “boost” him and Chase continued to be so sweet, despite rough days and nights.

On Friday, August 9, Chase was taken into surgery again for a PICC line.  He was thrilled to be losing the IV in his hand, but scared to be going for another “nap”.  I wished in those moments that I could just tear him out of his bed and carry him far away from all the pain and sadness, but again, felt peace in the moment that we were indeed doing the right thing for him and were so thankful for our friend Jen being in the operating room with him.

August 10:  “We first met Jen through mutual friends after Chase’s initial surgery.  She has become an incredibly special person to us – often caring for Chase through some of his hardest days/procedures.  We were so thankful to be with her yesterday!  Chase was very sad about going back under anesthesia, but informed me (with tears in his eyes): ‘Mom, do not worry for me, because I will be so brave, okay?’ There are no words to describe the heart of this child.  Blessed by him at every turn.  Thank you all for your continued prayer.  A PICC line was successfully placed and after several hours of post-procedure observation, we were able to come home!  #nomoreneedles“

After surgery, we had a few days off from the hospital.  Chase’s labs remained stable, but Bob and I asked for a one week extension on chemo for a variety of reasons, not the least of which was that Chase just didn’t seem as physically recovered as he should be despite his good lab numbers…

Moment by moment.

[Watch for part II of our August blog coming later this week…]