Our Smiley Seth

Our Smiley Seth

Monday, June 12, 2017

Week 16

Monday morning we headed into the Jimmy Clinic to start Seth's next round of chemo.  This round is typically done as outpatient with patients going in and out each day for treatment but after talking with Seth's doctors we decided it would be easier on us and Seth to have it as inpatient.  Seth had his blood work done and everything was looking great to get started. 

He received all of his chemotherapy in the clinic while we waited for his room at Children's to be ready.  He received Vincristine - 5 mins, Cyclophosphamide - 1 hr, and a new drug he's never had before Actinomycin - push. 
We had originally thought this round was going to be 3 days but after talking with Dr. Wright found out it was actually 5. 
We had talked with Seth's nutritionist during his last admission about switching him to the next stage formula to help him gain weight before the stem cell transplant.  We started it on Tuesday and he was tolerating it well.
There was a lot of down time during this admission but it was much better than driving in and out each day and Seth could play and walk the floor and talk to all his ladies (the nurses) regularly.  He did pretty well during this admission and only had one really bad night of sleep.
Sadie was lucky enough to have another trip to Gramma's beach house during this admission and they had great weather.
Due to the change of plans from 3 to 5 days we had to do a switch on Wednesday so I could take Sadie to her dance recital rehearsal.  It's always nice to enjoy these "normal" activities with Sadie.  She did great at rehearsal and we're looking forward to Saturday.
Wednesday afternoon someone from food services came up to invite us to parent's night out.  Given Steve was coming in and I was heading home I signed us up to enjoy some time together before heading home.  I was a little weary of the menu being it listed things like oysters, striped bass, and cantaloupe bisque on the menu but we are both so happy we went.  It was a nice break from the monotony of being in the room or walking the floor and the food was amazing!!

They had bumped Seth's chemotherapy earlier on Thursday so Friday we could get discharged at a reasonable hour.  We've been meaning to have Sadie tested for some time and have a follow up with the genetics team and we managed to schedule her for Friday as well.  We headed in early Friday morning and sailed right in ... no traffic!!  I'm not complaining but very odd!  Since we got their so early we went over to visit with Seth and Dada before heading to the clinic.  Steve had mentioned Seth had blood in his stool this morning and they had taken it for testing.  They thought it may be an intolerance to the new formula and it should work it's way out.  It unfortunately happened again later in the day so it was decided we would switch back to his previous formula.
Sadie and I headed over to the clinic and she loved playing in the play room and with the musical instruments and she did amazing for the blood work!!!  She didn't even flinch and took it like a champ.  While I sat there asking her to examine a curtain that was hanging for a distraction.  Afterwards she got to have a prize out of the prize box and stickers.  She was thrilled!! 

We headed back to Seth's room and rode the tricycle around the floor while the discharge paperwork was being prepared.
For now we will watch Seth's diapers for blood and if it doesn't clear up by Sunday we should call and get checked out.  Seth was also scheduled to be back for a well visit on Monday with the GI team for his G tube.  This had been postponed a few times already. 
We were thinking his next big admission would be for the stem cell transplant but due to the good response he's had and the tumor shrinking we will continue on with chemotherapy and hope that we can get to a point where there is no sign of disease before going through with the stem cell transplant.  That round is scheduled for July 10th.
We're looking forward to some time at home and enjoying Sadie's recital and Father's day together.


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