St. Jude – Tough Week

Summer and Angela made it back to Memphis on Sunday afternoon after one night in Carbondale.   I knew that Summer was not feeling the best because she was laying down soft blankets in the passenger seat of the Prius before she left the apartment parking lot.  When I talked to Angela on Monday morning… She said that Summer had canceled her PT appointments because she was tired and did not want to leave Target House.  Thats rare…  She always makes the trip to the clinic regardless of how she feels.

A few hours later I got a call from Angela that Summer was running a slight fever.  100.8.  We have been down this road before.  The last time we had a fever during treatment we had an immediate admittance into the hospital for a few long days while Summer got lots of fresh blood and antibodies.  It honestly seems like ages ago…  It happened right after we got back to Memphis for treatment, but were still in Tri-Delta.

Angela was in touch with St Jude and they were OK with Summer staying at Target House as long as the fever didn’t change.  It was Tuesday morning when Angela called me to tell me that Summer had to go in.  Once admitted, Summer was put on every fluid and antibiotic to start helping her drained system fight back.

I have not posted much about this because I have not been there for a first-hand account… And frankly… We question if it was the right decision to go back to Carbondale last weekend.  It’s a guilt thing.  I don’t believe that Carbondale had anything to do with her getting more or less sick.  But we wonder how much she was under-reporting her discomfort to make sure she would not be stopped from leaving town.

Angela said the last few days have been very hard since Summer has been wrenched over in pain with lower abdominal cramps.  Even with morphine (This is a first at St. Jude), Summer has been crying in pain.  When I talked to Ang tonight she was crying as well from being in the powerless state of an observer.  She said it’s been very hard to figure out if there is anything more they can be doing for Summer as she is racked with internal pain.  They are listening and are going to try some different things to get her more comfortable but they are having Summer sign off on more aggressive care.

Ang did make the comment that she has not seen Summer as powerless and weak since her last brain surgery.  I remember how that felt for us just stand by and wait for her to heal… It was one of the hardest times we have had.  Both of those surgeries tested our mental fortitude as a parent.

I asked Angela if Nate would still come down this weekend… And she said that even if he does…  One of us should still be there.  I am guessing as it sits right now… She will stay with Summer until we can handoff to each other in Memphis.

We have had a great run over the past few months.  Summer has had strong health and we have spent a lot of time keeping her entertained and looking forward to every day that gets her closer to the end of treatment.  But, we did know that 2 months in a row of her hardest Chemo treatments would start beating down her body in ways that we had yet to encounter.  I have seen lots of posts and stories of other kids going through terrible moments of treatment…  I really hoped we could continue to keep it looking easy.

Prayers and thoughts are still needed…  You are never out of the woods while you are in chemo treatment.

I will try to share some more over the next few days.  Sorry for the radio silence.