Tuesday Seth seemed to be doing a little bit better. The white lumen of his central line still came back showing infection and if it wasn't cleared up with the cultures taken that day it would be removed on Wednesday.
Later in the day Seth developed a new fever reaching 39.5 and was shivering again. The doctors made the decision his line needed to be removed emergently because it was too risky to keep it in. Steve called me after the decision was made and I rushed in to be there for the surgery which happened around 6pm. He received platelets during ththat timeand when we were back in the room he also received a blood transfusion. Seth came out of surgery with 4 IV's, one in each hand and foot, so they would have enough access to give him everything he needed and just in case they lost one.
It was so sad to see him like that and he was pretty miserable. I decided to stay over night and how things went in the morning and see what the team had to say.
Wednesday morning Dr. Chi rounded and while Seth did look much better since the line had been removed we discussed how quickly we could get the PIC line placed because he was just miserable with the 4 IV's. Thank goodness for the PCA of morphine which helped Seth sleep through most of the days until the PIC line could be placed.
Thursday morning Seth was scheduled to have the PIC line placed but fortunately for him someone cancelled even earlier and he was taken first thing in the morning. It's always hard being away from Steve and Seth when he needs these procedures. Luckily, this was done with mild sedation and in a procedure room rather than in the OR. His ANC was 530 when taken in the morning so he was just on the cusp of becoming neutropenic.
Friday after work I headed into Boston to trade places with Steve. Before arriving they had shut off Seth's continuous morphine drip because he had decreased the amount of button pushes he needed and didn't require any during the day either.
Saturday morning his ANC was 12,660!!! He really just jumped right back up, we're not sure he was every really considered neutropenic this round. His PCA for morphine was also taken down completely. While he was feeling better he was still on gut rest so we just enjoyed a day of walking the halls talking to all his ladies (the nurses), napping, and playing in the playroom. He is considered the mayor of 9N at this point and everyone stops to chat with him.
Sunday was more of the same and we got a visit from Steve and Sadie before swapping places again.
It wasn't until Tuesday that Seth finally got to start slowly receiving pedialyte through his G tube. He did well with that and on Wednesday they started a combination of pedialyte and formula and Thursday he was up to full strength on his formula. We're still working on bolis vs. continuous feeds and how much to give over what amount of time but overall he's doing fairly well tolerating his feeds.
The next steps for Seth's treatment have been a moving target it seems. First we were going to continue on with chemotheraphy skipping to week 27 of the treatment plan because 19 and 23 haven't shown to be very effective with AT/RT. Then we were waiting to hear if neurosurgery would be operating again to remove the last portion of the tumor because transplant would like no signs of disease before moving on to transplant. Finally, Thursday late afternoon it was decided that Seth would be moving on to stem cell transplant. After transplant Seth will continue on with the maintenance portion of the protocol.
A lot of things are going to have to happen over the next few weeks in preparation such as an MRI, numerous blood tests, a lumbar puncture and many follow up appointments at the clinic. Right now Seth is tentatively scheduled to begin the process the week of July 17th.
Before heading home on Friday a friend from high school and her family stopped by to say hello. Her son has been through the At/RT protocol and they were in town for an MRI and follow up at the clinic. I was so happy to see them and finally catch up. We've been emailing back and forth but it's not the same as seeing someone face to face. I wish we had more time to chat and just talk but they had to get to his appointment and we were headed home. She's been such a good resource of information/experience, ear to listen to grievances and wins, and just overall huge support. I'm so happy we finally got to see each other even if it was for a short time.
The nurses and staff of 9N gave us a bubble send off because unfortunately transplant happens on the 6th floor. We are going to miss them during that extended stay for sure!!!
For now we're headed home and looking forward to spending time as a family and celebrating Seth's birthday! Can't believe the little man is going to be ONE!