March 23, 1990 – Friday
Eli and I walked down to radiation oncology. Eli had a large syringe with no needle filled with water that he took with us. When we arrived in oncology, Eli started “shooting” everyone. The medical staffs were surprised and they laughed. Eli was in good spirits after he soaked the medical staff with water. I laughed, too, because I missed this mischievous yet endearing side of Eli. How I wished there would be more days like this one.
After radiation we walked to the EU post office to mail off packages. I had an initial interview with Social Security Administration today regarding Eli and his needs and illness. Eli qualified as he fit the “illness lasting more than one year or illness that will kill him.”
After that, Eli and I went to the dentist. Here, things went rather bad as Eli had personality changes brought about by the main tumor mass. Because of Eli’s foul mood, the dentist was not able to attend to Eli.
Then we went to the eye clinic so the doctor could remedy the one stitch in Eli’s right eye that was not placed properly.
After Eli’s 1:30 radiation treatment his eye was freshly stitched.
I spoke with Hannah, Noah, Anna, and Matt on the phone again. At this time, Matt and I had become really great friends although given the circumstances I was not expecting it to happen.
Eli was tired but he still talked to Noah for a few minutes. Then while Eli was on the phone, he started to doze off so I took the phone from him.
Two letters came in the mail today: one from Atty. Troy and the other from Zoe Green of the SRS in Durango. It was snowing here now and I had to wait in the cafeteria in 1F until I received a phone call saying I could go back to Eli.
At 8:00 PM I was able to go back up to 5D and to Eli. Eli had to have a chest X-ray and I had to wear a lead shield and hold Eli in place. It dawned on me that Henry had never once gone to any treatment or appointment of Eli’s. That asshole really did not care if Eli lived or died; he was so self-centered.
Later Henry called three times about his room at the Ronald McDonald House and all his stuff he left there. Not once did he ask how Eli was doing.
As Eli went to sleep, I was once again back to my solitude. I decided to read up on the home TPN orders so I would be prepared on what to do to give Eli the best care a mom can give to her sick child.
On the same night, Henry left for Durango.
Eli woke up three times during the night and I assisted him each time. I seemed to be losing weight now. I was now down to 114 pounds as opposed to the 119 pounds, which was my weight when I first arrived at EU. I needed to take care of myself, too, because I had to be stronger for Eli. I decided to eat more nutritious food, and to take in bigger quantities.
Similarly, Eli had lost so much weight, too, even though he was on TPN with lipids.