April 22, 1990 – Sunday – (Day 50)

I was awake at 5:30 AM but tired. Eli had been up twice during the night. After my shower I came out and Eli’s IV pump was beeping so I followed the line on his most important IV antibiotic and found his white port unconnected and his antibiotic all over his bed. This was the second time that Eli’s nurse had not taped the needle and port correctly and I was ticked off to say the least. After speaking with Eli’s nurse, I knew we could not give Eli another dose and risk renal failure.

Eli still had a temperature this morning but it was 99.9 degrees and we sent a stool culture down to the lab. This was improvement in his temperature. After Eli’s usual morning routine, I was reminding Eli of how we were going to make him feel better so that I could take him home soon and we could be with his brother.

Eli started to cry hard. He said, “Daddy told me I wasn’t going home. I have to stay here all the time.”

I asked Eli’s nurse, Rita, if she knew of this when she came in with medicine for Eli. Rita said yes, she had heard Henry say that to Eli and she had tried to comfort Eli after Henry left last Thursday, but she had not been back to work until today to tell me. I cried hard as I held Eli in my arms in the chair bed. That man was the very epitome of cruelty.

At around 11:00 AM, Eli became restless so I placed a mask on him and then took him outside to be in the sunshine.  Eli rode around outside on his red hot wheels. He loved riding around the patio area outside the EU bookstore. Eli was acting well – yet he was so sick. I took a lot of photos and some of Eli watering the flower plants in the garden pots with his water squirt gun. When Eli started to get tired, I took him back inside to his room for a nap.

While Eli slept I went to the bookstore and got him a new headband to help keep the dressing on his right eye covered. When checking his temperature, Eli was found to be normal. I was so glad. Eli woke up and asked for apple juice. Eli’s nurse and I talked about it and we got Eli some. Then we both told Eli to sip just a tiny bit and he did. Eli did not choke or take it down his wind pipe. We were both smiling. Eli only ended up drinking about 15 mls of apple juice, but it was great to see him be able to do this and not choke. Both Eli’s nurse and I considered this a miracle.

Labs today were HGB 8.7, platelets 72,000, WBC 3 and that made his ANC 300 per Dr. Mark but my calculations made it 30. Eli wasn’t on his way back up yet.

By 5:30 PM, Hannah called in to Eli’s room. She said that Henry had stopped by about 4:00 PM for about fifteen minutes. She said he spoke with her and her husband, Max, and that he did not talk with his own son. Henry had said to just let him keep on playing outside in the yard. I wondered why he didn’t want to talk with his son.  I did speak with my son after updating Hannah. Eli’s nurse left a note in Eli’s chart for his doctor regarding the apple juice he had drank, and I decided to ask the his doctor in the morning for another esophageal X-ray to check on improvement with his swallowing so maybe Eli could drink on other things, too, and receive more nourishment.

Eli went to sleep at around 9:00 PM and I fell asleep soon afterwards.

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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.

March 19, 1990 – Monday

Eli was up four times during the night for the bathroom.

At 7:20 AM, I took Eli down to radiation.  I stayed in the waiting area while Eli had his procedure so I would be immediately notified once the process was finished, and I could attend to my son in case something untoward came up.

At 8:30 AM, Eli was taken to the recovery room. The ENT doctor came while Eli was in recovery.  The doctor did not realize that Eli was receiving a fast acting anesthetic so he wasn’t able to check on Eli’s condition.  He said he’d come back at 1:30 PM.  Before he left, he told me that he could see Eli’s tumor through the back of his throat and through the lining at the back of his nose.

I was horrified.  How could so many doctors miss this if the tumor was that visible?  It was mind-boggling.  I couldn’t say if it was incompetence on the side of the radiologist who misread the CT scans, or the doctors who no longer reviewed the scans themselves, but what was I to think?

I just bawled while Eli slept.  When he was awake, I did my best to hide my emotions because I had to be strong for him and I couldn’t let Eli see me cry.