Today started at 7:15am with walking to St Jude. Mike suggested driving over. Maybe we should have since we needed to leave for the outside appointment with urology, but I said nah let’s walk it.
We arrived at the isolation doors before 7:30am. There was another family waiting. She asked what Jesse had. Said they’d been here since July, and that her home country of Peru had removed all of his tumor. I couldn’t get her to understand me (in meaning that I couldn’t get her to comprehend that we didn’t have everything done at St Jude.). I gave up and just let her talk. Mike said he felt she just wanted someone to listen to her. I am finding that more and more. They want to know if your kid has the same thing. If so then they want to compare notes. It actually sometimes feels like certain parents are trying to get into the my life is way worse than yours game. This is no competition. I just want people to stop talking to me like I am a moron.
Finally around 7:35am, the nurse came to take us to our room in D Clinic. Funny that they want you here at 7:30am for labs, but the nurse and clinicians obviously don’t clock in till 7:30am themselves.
The clinician that led us to D Clinic was the same one who thinks Jesse’s isolation is bull hockey. And she told me that 4 other kids are currently in isolation.
By 8:35am, we’d seen the nurse, gotten labs, peed in a cup (that was traumatic for some reason this morning), talked with the nurse practitioner, and saw the main oncologist. I did tell the nurse practitioner that I was frustrated with the disrespect in not calling me over the schedule. I had rearranged a meeting over the weekend because of the outside appointment with urology. Then without contacting me, they scheduled Jesse for a consult with surgery and anesthesia. Except on her schedule online, it said anesthesia and then surgery. No mention of the word consult.
And because of the lack of the word consult, I kept her from having any food this morning. In case she did have surgery, I didn’t want to be responsible for messing that up.
The wonderful nurse practitioner, who is the one who rocks, got the appointment changed to 2pm for me. She also got Jesse zofran in the pill form. She is awesome in not wasting people’s time and listening to them.
We left St Jude for the urology appointment with Le Bonheur’s urologist. Their registration is the picture of efficiency. (yeah sorry that is total sarcasm) We arrived with several people around the desk. I was waiting in line to sign Jesse in when some lady cut me off. People in Memphis are so rude… and they have those signs all over the hospital about manners… but they need to take a good look at themselves. I don’t think I have ever been to a place that is so rude.
After we signed in, Jesse and I sat down to wait. As we were waiting Mike and Chris joined us. I noticed the registration people were looking at Jesse’s file. The man obviously was trying to avoid us. And when the lady called our name, she looked all over the waiting room with an obvious facial expression of please don’t let that woman have the last name Hall. Sorry honey, that’s me 🙂 I have never seen anything like it.
She had a really hard time getting us registered because of having the out of state insurance. And she even had to have the man who obviously was avoiding us help. He was busy taking a picture on his personal phone of some lady’s baby he obviously didn’t know.
After 30 minutes, we were finally registered. The nurse had been waiting, so we quickly went back to have Jesse examined. Another nurse came into ask questions, then the doctor came in. Very nice guy. the procedure tomorrow will take him about 30 minutes. He will remove the tubes, test the flow from bladder to kidneys with a dye, and that’s it. I asked him about Jesse’s dribbling. We noticed this beginning in November. He feels that the bladder began spasming as the tumor was growing. And he feels it is still doing it now because of the stents.
I told Jesse we need to cross our fingers, toes, and eyes that we don’t have to replace the stents. Really praying hard that her body can fight off the neuroblastoma with the help of the drugs she’s had.
We left his office at almost 11am. Back at St Jude, we had a hard time finding a place to park because people who aren’t staying at the Grizzlies were parked here. Once we found a spot, we headed in to get the girls a snack while Mike ran to check on his and Chris’ flight. He returned with lunch for us. I worked while we waited for Jesse’s 2pm appointments.
At 1:30, Mike headed over to Triage for his blood draw. They have to check to make sure he hasn’t picked up any infectious diseases since the last Natural Killer blood draw. When he finished around 2pm, he searched for us at D Clinic, not realizing they had sent us to C Clinic for the consult. The lady on the desk told him at D Clinic, Jesse was in room 12. Mike walked back, knocked on the door, heard a muffled come in, opened the door, and said “Oops your not my daughter.” He walked back out and told the lady. She looked at him surprised saying, “We have 2 Jesse’s?”
Our consult with the surgery nurse and anesthesiologist was quick. I think the anesthesiologist would have taken them home… (he’d have brought them back). We ran into Mike as we were walking back to the Grizzlies house. I realized that I need to go pick up items from the take home pharmacy. Chris and I walked back over to get those items and the mail.
When we returned, I realized I forgot Jesse pill zofran. But Mike had run to the store for me, so I had to wait to go get it. While we waited, Jesse opened mail.
Thank you Mom, Uncle Jerry and Aunt Carolyn, Jeanette, and Billy and Debbie for your cards and well wishes. Thank you Mrs. Carlsen, Erin, Brianna, Mrs Perry, and Jesse’s kindergarten class for the Valentines. Jesse was so excited to get them.
Thank you for your cerealously (misspelled on purpose) funny Valentine Joel (and the cereal and spoon… now to find a bowl… haha I jest :)). Thank you for the gluten free food and puzzle.
When Mike returned, Chris and I ran over to get Jesse’s medicine. We ran into a friend and her family. Jesse was bummed that she couldn’t go with us, but we did give Jesse the chance to wave at her from the sidewalk.
Tonight we are getting ready for Mike and Chris to head out at 5:30am to return to Virginia. Then at 7:30am, we’ll start the steps to getting Jesse’s stents out. Then hopefully the first dose of chemo.