Jones Family

Jones Family
November 2009

Wednesday, June 24, 2009

2 months in...

We've had a roller coaster 72 hours. We left for Little Rock Sunday afternoon and thankfully had a good trip. We enjoyed a walk to the pool at the hotel and got to put our feet in at dusk (with a mask on) and Brayden seemed thrilled to push the boundaries of the steps of the pool. Freaking me out has become his favorite past time. I know he still is a boy wanting to explore, I just prefer it in other areas NOT open water with a gaping PICC line hole in his arm going straight to his heart, ya know? So I'm not over-reacting, right? Honestly, it was so relaxing to be in the cooler evening weather by the quiet pool and just enjoy the company of my sweet boy. We read more and prepped all I could on the impending Port surgery the next morning. We were all anxious about it, but we had some great materials from the hospital to help explain in detail what was going to happen. The past several days prior, he still wasn't at all sure about this THING they were going to cut him open and put in him. What's so bad about the PICC line? Sure, we have to maintenance it like crazy, wrap it before he can shower each day, pray it doesn't become infected, pray the lines don't clot off, change the bandage and keep it clean each week, but other than that, why mess with what's working? Even with the promise of swimming this summer once his port heals, I guess he can't get past the part of, "yeah, but they'll still have to cut me open!"
We get to the hospital early and ready to go and Brayden is being his cute self. We had fun playing Hangman on these cute little pads of paper I found to keep in our bag of goodies when we go to clinic. He was very, um, excited to celebrate when he would beat me. We passed the time waiting for pre-op, then talking with the Dr., the nurse, the anesthesiologist, the other nurse, then the Child life Specialist. I love how the hospital is geared toward kids and she came in and helped prepare him for what was going to happen. He seemed good to go...until he heard "Intubation." All the prep work we did didn't include that little tidbit. "What's intubation?" he was quick to ask. My eyes were darting at the team trying to figure out how we missed this part of the process. Thankfully, they would at least wait until he was sedated before putting the breathing tube down his throat and after the surgery was complete, it would be pulled out before he came to. I'll leave out the part about the medical corrections that were made about not taking out his PICC line so his port had time to heal. The hardest part for us was saying goodbye to him after some prayers together and walking to the waiting room. Each week when he's had his spinals or Lumbar Punctures, we at least get to hold his hand and stay with him until he's asleep. This was different.
So we waited...we laughed how the desk nurse said to be back in 20 min. We rushed back and guess what? The surgery hadn't started yet. They let us know when it had started and the Dr. was great to come out and talk to us when it was over. He said he did great. And we waited some more. It was another hour and a half before we could go see him in recovery. He did great, but was quick to show us he had an iv put in. WHAT?!?! So his nurse nodded in understanding. He has a PICC line, a Port and now an IV? Poor guy....Then he got really sick really fast. The surgery went great, but coming out from under the anesthesia he didn't do so well. They gave him a couple more anti-nausea medications and some morphine because he was hurting. It was awful to see him sick. And we waited. The orders were lost to get Brayden's blood drawn that morning and the floor where they were waiting for him to be admitted had his room ready, but there were no orders for him to go to the floor. This went on for an hour and finally Brayden's awesome nurse came down personally to re-write the orders and get the blood drawn. And we waited more. Almost 2 hours of the lab not receiving the blood before his Recovery nurse went to check and the blood never got sent to the labs. Thankfully it hadn't clotted yet and they could still use it for his labs. Then we wait more for the labs to do the tests. Brayden was resting peacefully...Bryan and I? Not so much. If Brayden hadn't been resting peacefully, it would have been a different several hours entirely.
Bryan and I had been so convinced Brayden would be admitted. We knew 4 days ago his ANC's were above 1600 and they just needed to be 750 to be admitted and start the next round of 2-weeks of Ara-C and Cytoxin. Finally labs were back and his nurse came down to talk to us. Well, Brayden was finally back to being textbook. His counts had plummeted to just above 600, which 500 is Neutropenic stage. We were stunned. I knew the day before he wasn't quite as energetic but neither Bryan nor I could believe it. It happened so fast! So at 2:00, we were headed home. We finally got moved to post-op where they were pushing him to wake up, sit up, get dressed, and as soon as he would drink something, they were sending him home. It was too fast. They even had us sign discharge papers. Brayden started throwing everything up. He was so exhausted and felt awful. He couldn't keep anything down. They got him started back on his iv, waited another hour, we tried some water. He kept down 5oz, they took out the iv, and all I could think about was the 4 hour drive ahead of us and how in the world he was going to do on the way home. He was almost dressed when suddenly Bryan grabbed the basin just in time. He threw up all the water. We were thankful when they let him rest and called his Nurse. They warned us he would probably get admitted.
The Dr. on call on his unit came to see him. It was cool because we hadn't met her yet and she works with Brayden's Dr. She walked in and said, "I've heard about the faux-hawk! How are you feeling? Are you hurting?" Brayden did his normal thing saying he was fine. We all laughed when she said, "Yeah, I've also heard how you NEVER complain or ask for medicine so I'll take that with a grain of salt!" WHOA! She had him pegged! It was cool to hear that because they do know him pretty well. She reassured us we would get him up to the floor, get more fluids and continuous anti-nausea meds through the night and start slow. Once he could keep clear fluids down, move up and then hopefully go home the next day. Bryan and I felt so much better. Even though his was an out-patient surgery, with his low counts, it was nice to know professionals would be watching him every hour through the night and we could rest knowing he was in good hands.
Within an hour of finally moving to the floor (about 9:30) we were all worn out. Brayden got comfortable after keeping his regimen meds down with water. He hadn't been able to take them all day. I felt better watching the clock as he kept them down. Bryan and I finally were able to get some rest around 11.
The next day he did great. After literally barely moving through the night, he had slept for nearly 24 hours. His Dr. and Nurse came to see him and loved giving him a hard time about "Did they put chemo in while doing the anesthesia? That was a lot of throwing up!" Basically, this was so much more anesthesia than his previous procedures, he just didn't respond well to it. He got up and moving around pretty quick and we were excited when he announced he was hungry after keeping water and juice down. He scarfed 2 bowls of cheerios (mental work note: there were no Scooters there. Try to get Alt Channels to sell in to the hospital...oh, nevermind). Considering the situation we would have never touched cheerios, but were thankful he was eating. We got to go home around 2 and he did great on the way home.
So the plan is to do some blood work on Friday or Saturday locally and see if his counts are high enough to come in on Monday to again try the next round of chemo. His Nurse had told us before T-Cell patients NEVER complete chemo on time by the schedule because of these things and it's totally normal. Brayden was finally there. We were thankful we had the higher counts because we got to do a lot of things we wouldn't have. This means were back to being in Isolation. This is the lowest his counts have been so far, so we're being careful.
He's been in great spirits. We got to see what the port looked like from his social worker buddy, Stephanie. We laughed when she said, "Do you want to see what your port looks like?" He gasped, "NO!" I said, "No, not yours specifically but what ANOTHER one looks like?" "OH!" he said. She laughed and reassured him we would be looking under his skin at his. It helped, I think for all of us to understand it a little better. It's thicker than what we thought but about the size of a quarter. He's aware of it now that he's home and we're working on him not favoring that arm or shoulder so it heals with him doing his normal things.
He did have a rough time of it yesterday morning. He woke up at 4:30 and got sick. But we were happy to anti-nausea meds took effect quickly. He had a very healthy dinner the night before after we got home from Little Rock. So all in all, he's doing great. By the end of the day yesterday he was running around and playing more.
It hit us Monday when we were being admitted the date was 2 months from his initial diagnosis. I couldn't believe how much things have changed for us in that short amount of time. I'm so proud of how Brayden is doing. I can't imagine how hard this must be for him, but he's persevering. We're celebrating our week-long break without chemo and making plans for the next outing. We're remembering to enjoy it all!


  1. Still here & reading, keeping hope & faith for you all! ~Paula

  2. Brayden, Uncle Jeff Loves you and still reading everyday...

  3. I don't know what to say other than I am so tense and anxious for this difficult phase to be over with. I am speechless at how well Brayden is handling this. Keep it up!

  4. Brayden,
    Just wanted you to know we think about you and pray for you often. It was fun getting to visit you, talk Star Wars, and meet Hershey.
    God has truly been with you the past two months and I know He will be faithful to see you through this journey.
    Stay brave and strong.
    Mrs. McCall

  5. Wow, I'm exhausted just reading this entry! What a day! Brayden thanks for being such a cool kid and having awesome parents!