Tuesday

This hand gave him lots of trouble.

This is Henry's favorite line from the disc menu for Prisoner of Azkaban

Tuesday Henry fevered and slept off and on. His temp getting up to 102 with round the clock meds. Every time the door opened he would get upset that another doctor was coming to poke him or bother him. He hated the iv in his hand and his hands and feet hurt. The doctor came in and wrote on the white board a treatment plan starting with more tests.   He told us for boys it is typically around 2 and a half years of treatment. First they wanted an ultrasound on his heart. After they get results for that they would do 3 things at once to minimize the amount of time he would be under anesthesia. A lumbar puncture to check his spinal fluid for cancer cells and to inject some Chemo meds directly into his spinal fluid. A bone marrow biopsy to check his specific make up of leukemia. The last thing they wanted was to put in an access port to Henry's heart so that they wouldn't have to poke him every time they needed blood work or to give meds. The list of meds and how often and when we would be coming back for treatment and for how long  was utterly overwhelming for me and I am beyond greatful that Jeremy has been here for all of this.  I took a picture of the white board so I can refer back to it and Jeremy has been talking me through and answering my questions.

They did the ultrasound on Henry's heart to make sure it would be healthy enough for a port and for the chemo meds they would be using. We took him to the ultrasound floor in a wagon because we were also going to take him for an exploring walk.  The ultrasound took about 40 minutes and by the time it was done Henry was in pain and tired.  They pushed the other tests back until the next day. They wanted us to move to the cancer floor but decided it would be easier after his procedures. I could tell my boy was feeling better but not super great because he started say "Mom, I love you" a lot. Henry would not eat all of Monday and most of Tuesday evening until he decided a grilled cheese sound good to eat.  So we ordered his food and he was more alert and his normal self while ate a bit.
Since Jeremy and I weren't planning on being in Utah for so long we still had nothing for ourselves except the complimentary toothbrushes the nurse gave us. He decided to make a trip home Tuesday evening for clothes, our meds, toiletries and most importantly to talk to our other children.  Henry was pretty upset at the thought of having either of his parents leave so while Jeremy was gone he wanted extra snuggles. I was so anxious and antsy that I didn't go to sleep until 10:30 and at 11:20 the nurse woke me up to move rooms because they needed a room and we were scheduled to move anyway. I packed up our room and then waited for our new room. Henry slept through the elevator ride but woke up when we got inside and was confused and wanted his daddy.  He stayed up from midnight to 6 am watching movies and asking me if I was asleep and telling me not to go to sleep.