Interim Maintenance 1 - Day 31

Yesterday we took JP for his 4th visit in the 3rd phase. That meant a check up in clinic, a one-minute IV push of Vincristine, a 15-minute IV push of Methotrexate and a lumbar puncture with Methotrexate into his spinal fluid. Since yesterday was a lumber puncture, he couldn't have anything to eat until after the procedure. That always makes for a fun morning. The kid doesn't like food, but of course on the day he can't eat anything he is crying for breakfast. He really wanted M&M's so I had to pack some for the hospital and promised he could have them after his LP. He kept telling everyone he wanted some "en-a-mens" and it was pretty cute.

Normally we have the IV chemo before we go down to the RTU but it wasn't up from the pharmacy in time. We went downstairs, JP asked to watch Mickey Mouse Clubhouse and then they had me carry him into the operating room. He was happy to see Dr. Barnette again and gave him a big silly wave. He was really good to lay on the table and I told him as soon as he woke up from his sleepy-sleep he could eat all his M&M's and all of a sudden he got mad and started crying "I don't want to sleepy-sleep! Mom, I don't want to sleepy-sleep!" and then his eyes rolled back and he was out. Good ol' anesthesia. It is a little bit freaky watching your kid fall asleep with anesthesia, I don't know if I'll ever not worry a little bit.

When it was all done it took him about 45 minutes to start waking up. We went back to snuggle him and help him feel happy about waking up. He was coughing a lot (they usually put a tube down his throat during the LP so it always causes a nasty cough) and crying for his mommy. :( It really is so sad to see him feeling awful and disoriented. And, as is tradition, the first thing he wanted to eat was Cheetos. Once he had those he was pretty happy. We had to head back upstairs to get his regular chemo and we decided to order him some lunch since it was almost 2:00 and all he'd had to eat was Cheetos. He told me he wanted a cheeseburger and fries and when it showed up all he ate were a couple fries. Did I mention he has mouth sores? Chemotherapy, especially in increased dosages, can cause mouth sores. Add that to our already picky child and he literally doesn't want to eat anything. He has been losing weight, but he's still up a pound or two from diagnosis (3 months ago) so the doc didn't seem worried. His counts were all good this time (he went from an ANC of 0.5 to 1.3 in 10 days - we're so happy we kept him home and away from people because it really did help him build up a little bit of strength!) and they upped his dosage of Methotrexate. They aren't looking at a "goal" level of Methotrexate during this phase, they are just increasing it as long as he tolerates it.

Our next appointment should be June 11th and then hopefully we won't have to be back for 15 days to start the next phase. That means there is a window of opportunity for me to take the young women to girl's camp and not have to juggle my time between nursing a baby, taking care of JP, getting the girl's up the mountain and a hospital visit. It really is a tender mercy that we will have a small break from chemo so I can take care of my church calling without that added stress.

All our pictures from yesterday are on Josh's phone so I will add them when he gets home. I just wanted to get this posted!