Update on Josiah Tuley

 

We got up at 4:00 this morning to get ready and gave Josiah his medicine at 4:30. He couldn't have applesauce, so he had jello. It was harder to mix the medicine in, but it worked pretty well. He seemed to like it. We left a little before 5 and made it to the hospital at 5:30. It was close to 6:30 before we were registered and soon after we were called back to the room. It was going pretty quickly until they were interrupted with an emergency surgery. Josiah's surgery was pushed back and they allowed him to have a drink of water. He was tired so went to sleep pretty quickly after. The Doctor came in and explained the procedure and showed us what the port looked like.

I snuggled with Josiah and even slept a little I think. The oncology nurse came in to get the consent for chemo paperwork and talked with us about the plans for Monday. Because of Josiah's Diabetes Insipidus and the extra fluid that he will receive through an IV during chemo, he will need to be admitted into the PICU (Pediatric ICU) both during and after his chemo treatments. We were hoping that he would only need to have his treatment as an inpatient for the first few times and then switch to outpatient. While we are unsure of how everything will go, it looks like we may be admitted into the hospital for each of his treatments.

We have a better understanding of Josiah's treatment plan as well. The first 12 weeks are called the induction phase, and after the MRI will be his maintenance treatment. My understanding was that this meant every 3 weeks, BUT his treatments will still be weekly during this time with an occasional week of rest. (I have more to understand, but that's in 3 months, so I'm not worried about all those details right now!) The maintenance treatments will last about a year. The treatment should be enough to kill the tumor, and after the year treatment he should be back to normal.

Josiah woke up at about 8:45 and they came to get him to take him back to the OR at 8:50. At 9:40 we had an update that they had started about 10 minutes before and that the wire was though the vein and they were ready to make a pocket for the port to fit into. At 10:45 we were told that he has been taken to recovery and the Dr. would be out soon. The Dr. came out at 10:50 and we were able to go back and see Josiah at 11:50. He was pretty upset, but was happy to see us and drank some juice and kept it down. They took his IV out and we were able to go. We left for home at 12:45. When we got home he was pretty happy. He had some graham crackers then I laid down with him and we both took a nap. The kids got home from school and then Nathan took them back to school for parent teacher conferences. They're both doing great at school! They also went to the book fair and each picked out a book, so after we ate supper and had baths, we read their books for the rest of the evening.