ADI II Day 1

Nathan started another phase today and it got off to the usual shmozzle. We had to be at the Cancer Center early for blood work today as Nathan's counts had to be at the appropriate levels before we could proceed. We got there at 7:50am and it was nice that they were ready for us shortly. Nathan got accessed easily, no fuss, and we were on our way to RUH for an echocardiogram.

We got to the pediatric reception which is supposed to open at 8 and it was still closed so we sat down to wait. A nurse came out after a few minutes and was surprised to see us there so she opened up the registration after commenting that she didn't know where anyone was. Nathan registered himself and we were off to the next waiting room. Fortunately the technician was just coming to look for us as we got there so off to the echo room we went. Nathan listened very well to the man working the machine and he tried hard to do everything that was asked of him. Unfortunately he tried too hard and that made one test not work but it wasn't a big deal. Nathan got dressed and back we went to the Cancer Center.

We went to the play room and started playing the Game of Life. It didn't have the rules and I couldn't remember them all so we made them up as we went along. At 9 am I went to see if the blood work was back as we didn't have Emla cream on Nathan's back or legs yet and he was scheduled for his lumbar puncture at 10am. When Andrea went to check on the test results the lab said they didn't have Nathan's samples! Yeesh. They had to find them and then run the tests and the results did get back before 10 and Nathan was good to go. The anaesthesiologist actually showed up on time and it looked good, however, the pharmacy didn't start making up the medication until the results were back so we had no chemo drugs at 10. The anaesthesiologist (green men) said he'd be back at 10:30am. This set back started to get to Nathan as he was thirsty AND hungry but still not allowed to eat or drink. He got upset a couple of times but we were getting through it.

While we were waiting they decided to do his checkup with Dr Ali and so we went to the back examination room. Nathan was not particularly cooperative by this point as he just want to get on with it. He enjoys waiting as much as his father does... I think that was passed down through the Trombley genes. Anyway, Dr Ali would tell him to look left and he'd look right... head up, and the head would go down... open your eyes and he'd close them... follow the light and Nathan would go crosseyed! Dr Ali laughed it off and got through it all anyway. It helped that right before he was done the meds and the green men both showed and if Nathan cooperated then we would be able to get on with it so Nathan listened well for the last few minutes.

Off to the procedure room we went and Nathan climbed up on the table. He put his penguin mask on, put the monitor on his own toe and told the anaesthesiologist "I know, I know" as he was trying to explain what would happen next. We kissed him goodnight and he was ready to go to sleep!

While he was out we took the opportunity to talk to Rick (clinic social worker) about how Nathan's leg treatments would proceed this time as we were not going to put up with the farce that happened at the end of the last phase. We went through a few things and we had a few uncomfortable moments but we made a plan. We were first going to check to see if we could go back to the PEG version that Nathan had the slight allergic reaction to but was only 4 needles instead of 24, and failing that, that I would be the one to go in with Nathan and try a bear hug method. As we were finishing up Nathan was done and ready to wake up so we headed back to the procedure room. He was just waking and wanted his Mommy and Daddy but Daddy had to talk to the Dr with Rick to discuss the upcoming treatments. Dr Ali expressed grave concerns about going back to the PEG so that was nixed. He agreed with the plan of me going in with Nathan for the next set of leg needles. He also wanted to make sure that we understood that they all thought we were doing a good job of parenting and that wasn't why they were wanting to make changes. It was just that it wasn't working well the way we were going and we are hoping to make it easier on Nathan and therefore easier on us.

Shelley was with Nathan and had to carry him back to the playroom as he was groggy coming out of the general anaesthetic. Not too groggy to start eating though and Shelley had packed him a good lunch. He started with sandwiches, went through a bag of grapes and then onto a bag of Salt and Vinegar chips - his favourite! We had to stay put while Nathan received Doxorubicin but after that was in we were allowed to go. Again, it had to happen during lunchtime and so they were down to one nurse and it took awhile for Jan to have time to de-access Nathan. We finally got to leave and got home about 1:30pm.

Nathan was tired and not feeling well so had a low key afternoon. By 4:30pm he started feeling nauseated but it wasn't time for the anti-nausea drug Ondansatron. He managed to keep it in check and was able to have the drug around supper time. Nathan is feeling better. The Dexamethasone steroid started tonight. Because he has gotten taller and gained a few pounds since May, when he had the last round of steroids, the dosage was increased slightly. It will take 7 days by the time the hunger has kicked in but we don't mind that. It is the emotional roller coaster that he will be on that keeps us on our toes - he gets that part already from his mother so add the steroids to it. Being through this phase once before we do know that it gets better after the drugs have wore off. As for now, 5 more sets of leg needles.