Out of the broom closet....

To pick up where I left off from my previous post....

The evening of Tuesday, June 8th, 2010, Brody began his second go round of chemotherapy, steroids and countless other prophylactic medicines. Our little fighter once again proved that he could handle these big hitting meds better than most adults :). For the first time in a month Brody drifted off soundly to sleep and stayed that way all night. He'd been suffering from round the clock fevers for 4 1/2 weeks, yes, 4 1/2 weeks. By the time he woke on Wednesday morning (June 9th) he already looked like a different boy. He was still uncomfortable from the bone marrow biopsy and surgery to place the central line, but his skin was no longer red as a tomato! Saturday thru Tuesday had marked his highest fevers of record, topping a 106 a couple of different times. His doctors were thrilled with his quick turn around and so were Jeff and I. To think, at 8 am Wednesday morning the fevers had broke, he'd had every test under the sun, a true diagnosis and his first treatments, all 7 1/2 hours prior to his scheduled appointment in Portland, where all we were going to do was review pathology results from a week prior! We breathed a heavy sigh of relief knowing we'd done the absolute right thing by bringing Brody to Children's.

Thursday turned out to be a bit more eventful. As the steroids started to kick in on Wednesday evening Brody got more and more freaked out. The only thing that would calm him was for me to sit and hold him. The trouble with this is, I also have a six week old baby that requires the same amount of attention from me. Hospitals, as many of you know, are the absolute worst place on the planet to get some rest. I was up all night sitting with Brody and tending to Kaelyn. I got maybe one hour of sleep. I was exhausted both emotionally and physically. The stress of the past 5 weeks and the weight of Brody's situation were all bearing down on me, on all of us. Matters were not made any easier when the nurses came in at 6:30 am informing us that they needed our private room for a patient coming in that morning requiring isolation. Typically you'd think moving from one room to the next in a hospital wouldn't be such a big deal. At Emanuel we moved rooms constantly. However, not all rooms on the SCCA (Seattle Cancer Care Alliance) floor are private rooms. Moving to a shared room with a roid rager and an infant wasn't something we were thrilled about. To make matters worse, it was the last room they had open and THE WORST room in the world. I affectionately dubbed it "the broom closet". There were no windows and Brody's bed was so close to the shared bathroom that each time his "roomie" went to go potty the door couldnt quite open all the way because it hit his bed. It should be noted that many of these kids are on IV fluids and so there are frequent (hourly) trips to the bathroom. The worst part, the portion of the room that was Brody's was so small there wasnt room for all of us, meaning our little family unit needed to be broken up. With Brody so freaked out on steroids and also nursing Kaelyn, I'd need to stay and MY support system, Jeff, would have to go. I was a mess. When you reach the level of emotional and physical exhaustion that I had reached, reasoning and common sense all seem to go out the window. I know a room seems silly but when your entire life has been turned completely upside down and you feel as if you have zero control over all the things happening to you, something as simple as a "room" can make all the difference. As I told my friend Kathleen, a room can seem completely trivial but its not. The private room symbolized a place of security. it meant we could all be together. I bring this up now because I want anyone who may be reading this--whether you are a nurse, hospital administrator, doctor--families of sick children need all the support they can get. Taking their needs out of the equation disrupts the entire balance. Tuesday we had moved in to this room, got settled in, dealt with Brody's diagnosis and first treatments and were just beginning to feel grounded again. So, 24 hours later, to disrupt all of that progress was a very big deal. I still dont understand why they moved us into the private room in the first place if they thought there would be any possibility that they'd need it for another patient.

Moving on... Around 4 pm our attending Hemonc doc, Dr. Thomas Manley, came in to tell us that Brody was doing so well compared to Saturday that it was time to go. Yay! Out of the broom closet! We just needed to receive instruction from the home training nurse on caring for Brody's central line and we were free to go. Although happy to be out of the broom closet, the moment was bitter sweet. Dr. Manley is second only to Ann Loeffler in ranking our favorite "Brody Docs". He is one of the most genuine people you'll ever meet. I always say that you cannot fake genuine so believe me when I say that Dr. Manley is the real deal. He is at the top of his game as a doctor but more importantly he's awesome with the kids and the parents. He doesnt rush conversations, he's patient and thorough and he's so loving to Brody. He never entered or left the room without acknowledging and checking on his patient. Although we were anxious to be back home, and looking forward to working with Dr. Stork and the rest of the Doernbecher team, it was really hard to say goodbye to Seattle and our amazing team of residents, Fellows and Dr. Manley and Dr. Thompson (Brody's HLH specialist). For all of you Duck Fans its going to be hard reading this, but there are a few good Huskies :). Good riddance broom closet and thank you Seattle Children's Hospital :).