October 26th, 2004
We are Home
We brought Spencer home from the hospital last night at 6 PM. The weekend went well, all things considered.
Friday, we spent time with Deanna, the child life specialist who helped teach Spencer about the upcoming procedure. Spencer’s doctor, Dr. Sharp, is fantastic. He’s very communicative and helpful. Spencer likes him. We like him. He ran into Rachel and Sharron on their way in Saturday morning (while he was on his way to prep for the procedure) and carried our bags to our hospital room. He does a great job talking through the test results, the road map, and the medications Spencer will be taking.
Saturday, Spencer had a procedure to install his port-a-cath (for IV access) and a lumbar puncture. The lumbar puncture was to take some spinal fluid and put in some chemo. The spinal fluid got tested for leukemia cells and there are none. The chemo is to try to prevent the leukemia from entering his central nervous system. In the evening, Spencer started IV chemo with a shot into his IV line (so no needle stick) and started taking steroids. We watched a lot of TV, read some, and played in the play room.
Sunday, Spencer decided he doesn’t like the taste of the medication (steroids, another to help with uric acid elimination) and vomited to prove it, so we’ve switched to pills (not ground up) in pudding. That is working well as of Tuesday morning. More blood work in the wee hours. The nurse draws blood through the catheter around 4-5 AM each day. The results look good. The chemo is starting to have effect. His platelets are really low. His hemoglobin is coming up and he’s showing more energy. White blood cell count is pretty low, but the good cells are improving. Dr. Sharp
Monday, we confirm that today is going home day. It’s a day kind of like Sunday, but with more play room time. Spencer’s getting very sick of the hospital and starting to rebel at the routine. We’re both exhausted from poor sleep and being waken up in the night, but Brad (the night “CA” – I think that’s clinical assistant) is fun, and a Red Sox fan. He makes Spencer laugh. The night nurse is also great and everybody is very nice to Spencer. The bad part of the day for Spencer is two (simultaneous, one on each leg) intramuscular shots for one of the chemo drugs. Fortunately, we only have to do that one time and he was terrified, but very courageous. He held still even though he was crying and the lidocaine helped a lot. The end of the day was a lot of getting things in order: packing, getting the prescriptions we need (4 pills and one liquid, all twice daily), getting out, heading home, and doing a little shopping for key first day supplies (pudding for the pills, medication we might need for side effects, supplies for a strawberry milkshake).
Rachel is doing all of the organizing: making appointments, calling school, calling swim teacher, calling therapist, and making doctor appointments for Spencer and Jacob. She’ll head out baby clothes shopping this afternoon (we have no warm clothes in Jacob’s size since Spencer was this size in summer) and do a little more food shopping.
Again, friends are helping in invaluable ways. Rachel’s van is still broken; Gregory is going to take her our so I can stay home with Spencer. Jennifer brought us some prepared food to use for meals. Caroline picked up one of the meds we needed last night when the first pharmacy didn’t have it. Megan spent a lot of the weekend here with Rachel and Jacob. Tere covered one night. Joyce stayed on Saturday during the day. Jennifer gave Megan a break while I was home on Sunday. Sharron has been the backup chauffeur with the second van and supplier of Thomas the Tank Engine toys for Spencer. Chuck came by the first night when I really needed to just sit and talk (and eat a Schlotsky’s Original). The kids from Spencer’s Religious Education class made cards for him. That’s all just off the top of my head.
