June 12 2014

So behind in updating… and have lost count of days…

I decided to take some time off from posting because I was swamped with work, kids, house, and cleaning. Plus we were in a period of recovery with thankfully not much happening. And I was paranoid that I might jinx Jesse into a stay in the hospital 🙂

The good news while we were home is

1. No hospital stays for viruses, fevers, or extra bugs 🙂
2. Her ANC recovered 5 days faster at home than when we were here for Round 5. Meaning for Jesse less shots. Yeah!
3. And we gained weight (yes both of us)

On Tuesday, June 10, Jesse and I left Williamsburg at 6:30am for Memphis, TN. Turns out St Jude has a policy about flights. They will not schedule one for you if call after 14 days before you need to come out. This is actually a plus for us because I would rather have my vehicle with us.

We headed down 64 to 81, then onto 40. The only bad traffic we hit was in Nashville. And I am sure some people thought I had lost it after Nashville because I was whacking the dashboard with a bottle. For some reason I had 2 spiders in my car. I hate killing spiders, but they were building a web right in the windshield in my line of vision.

After driving through 2 rounds of blinding rain, Jesse and I arrived in Memphis at 8:30pm CDT. At the Grizzlies House, we caused a bit of concern. With Jesse being in isolation, we can only stay in suites and on the property. But the Grizzlies was completely full. The desk called the Medicine room, who okayed Jesse staying at the Crown Plaza for one night.

By 10:00pm, we were settled in. I wasn’t overly happy because Jesse has medicine that needs a fridge… and the rooms didn’t have a fridge. She and I filled the cooler with ice from the ice machine.

Jesse woke by 6:30am. She had been stressing about the bone marrow biopsy scheduled for Wednesday for most of Tuesday. We headed over to the hospital to get checked in through isolation earlier than we needed to. But I figured I’d rather wait over at St Jude’s.

The isolation nurse was surprised to see us. And many of the other nurses asked why were we still in isolation. A nurse practitioner (not our normal one) ordered a sterile urine catch in hopes she could get Jesse out of isolation. I appreciate her desire and effort, but it won’t happen. The exciting news of the day was Jesse’s weight: 15.9kg!! (and today is was up to 16kg. Yes!)

The same nurse practitioner did Jesse’s bone marrow biopsy. She did an awesome job. She only stuck her once on each side and Jesse didn’t seem to have near the pain she had during the last bone marrow biopsy. In fact, she has been running, jumping, dancing, and moving around a lot.

Our room at the Grizzlies was still not ready when we finished at the hospital. Jesse and I went to grab some lunch. We then planned to find a bookstore or library with free internet, but the Grizzlies called us as we were leaving.

They have put us in an isolation room, but it is the best one. We have 2 huge windows letting lots of light in. Jesse is scared in this room though. We are next to the washing machines for the hotel I think. Every time the water is let out, Jesse freaks.

On Thursday morning, Jesse’s first appointment was at 8:30am CT. As they led us into our isolation room, I overheard the staff saying they had 53 patients to see today. Normal numbers are 20 to 30. I am well aware this means a pressed for time doctor, if we see one at all.

About 10am, the technician arrived for the ECHO/ EKG. Jesse was a little uncomfortable laying on the table because of her biopsy sites. As he finished the tests, his phone rang. For some reason Jesse was not on their schedule. The person on the other end sounded to be chastising him for giving her an ECHO. I am just thankful it was completed before she was discovered to have fallen off their schedule.

Once he was done, they took us to Nuke Med for Jesse’s MIBG. The technician told us the test would take an hour and 15 minutes. She let Jesse pick out a movie to watch. Jesse did have some trouble being patient, but she did hold still.

We were then returned to D Clinic to wait for the doctor. We arrived at 11:45am. I went out to get Jesse a new drink and some food. The cafeteria felt like being in Walmart on Black Friday.

By 1:45pm, we had not seen anyone. In fact I don’t think the clinician told anyone she had brought us back because our clinic nurse stuck her head in the door at 1:45pm to see if we were back.

A different nurse practitioner came into see us about 2pm. She said she and a doctor (our main doctor was seeing his new grand babby) had discussed Jesse in great length.

Jesse will be getting radiation. And they already had the results of her MIBG. She told me they are not seeing an new uptake in the tumors. And she used the word no evidence of uptake. This is good, but I am very cautious. We still need to have the results of the CT Scans.

The nurse practitioner and I decided Jesse and I need to see the main oncologist on Monday morning. I need to know what the plan is. I am so tired of the loftiness and lack of communication around here.

Tomorrow Jesse will have the CT Scan and an eye exam. More than likely we will not know the results of the CT Scan until Monday. And to be honest I am not overly thrilled to meet with the radiation oncologist. He is the only one here who deals with neuroblastoma… and he has been gone for 2 weeks. The last time we met with him, it was obvious that communication was very lax between the departments.

Thank you Casear Church for the sticker books. Thank you Dr. Graham-Montaque and staff for the art kit. Jesse really enjoyed playing with it last night. Thank you Wendy for the color kit and Llama Llama book. Jesse has made me read it to her three times. Thank you Jonnie and Ken for the notebook and stickers. Thank you Knob Creek, Mt Pleasant, and Tabernacle UMC for the cards and well wishes. Thank you Mom and Louise Marie for the support.