Day 4 at St. Jude

We received a call to come to clinic around 10am to sign the consent forms to be in the study. This means that by tonight Jesse will be inpatient at St. Jude’s. And that we’ll get the first dose of chemo on Friday morning. The doses will each be infused for 30 minutes each. On Saturday she will begin receiving humanized antibody. This will be infused over 4 hours.

The chemo will last 5 days. The humanized antibody for 4 days. Then we’ll be discharged for me to give her IL-2 in shot form every other day and GMSCF everyday until her immune system rebounds.

Then we had a meeting with the line nurse. Then we went to wait for her CT Scan. As we waited I worked on getting a hold of Mike to fax him the consent papers for him to be tested for his Natural Killer cells to see if they or mine are a good match for Jesse. At 1:30pm I took her temp: 103.1 F. We went back to clinic. They checked her for a virus by shoving a small tube up her nose. That didn’t go over well. They also gave her Tylenol.

We returned to Chili’s Care Center for the CT Scan. Afterwards we head back to meet with her oncologist here.

The news is not good. And I can’t tell you how devastated I am. I keep asking myself what did I do wrong. Where did I screw up? I know deep down it is a gene that went berserk. But it doesn’t stop the pain and guilt I feel.

The tumor has doubled in size. It is in her bone marrow. Even the original mass is now larger. I asked him if the old tumor had woke up. He responded that it would take days of tests to know that. I had sent Jesse out with mom to the waiting room.

I did notice today that her area was more swollen on the right side. He told me that her kidneys renal function is still good, but the tumor is now squeezing both tubes to the bladder. And unless we surgically put tubes from the kidneys to the bags on the outside of her body, her kidneys will get worse. So tomorrow afternoon we will go have that put in place.

In the mean time, we have having a blood infusion tonight. Her blood hemoglobin was 7.7, and they want that higher for surgery. And they have her on a morphine pump.

Tomorrow morning early she should get the first dose of chemo. If it works to shrink the tumor by 50% or more, he is talking about having surgery to remove what they can at some point down the road.

If you want to send Jesse a card to cheer her up,

Jesse Hall Patient
St Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis TN 38105

Please no plush toys. If you are inclined to send toys and books, they must be new. The reason for this and the no plush toys is germs and her becoming neutropenic again. If there are germs on them, she will have nothing to fight back with.

If you want to just send cards, that would be awesome. As of now those are easier for me to transport back and forth, and I will have no vehicle to carry extras from the hospital. Not trying to sound ungrateful, just thinking of the logistics of getting Jesse and everything out of the hospital on Wednesday or Thursday… and back to the Grizzlies house or to the Ronald McDonald House or Target House, where ever they send us. And then keeping them safe when we return to the hospital in 3 weeks to start the next round. ( I am trying to be optimistic… it is hard because of how scary this is… and how badly I want to keep her.)

I do feel guilty for getting frustrated with her the last few months… for being mad at her for fighting with her sister… for not listening to me. Last night she was very worried Santa won’t come to see her. I asked her why. She told me that she’d been bad.

Tonight, she told the nurse that she looked better with her glasses on. Luckily the nurses here are as awesome as the ones on 8B at CHKD. I am going to have to teach her how to bite her tongue on occasion.

Tomorrow morning we have the surgery to help her kidneys and get her blood pressure out of the 120s over 90s.