We left St Jude on June 16 to head home for our camper. I know I have left many people in suspense over Jesse’s scans. I am sorry for the delay. I had many things to get completed when we got home sine we will be in Memphis for one more month.
On June 16th, we were supposed to see our main oncologist at 8:30am. No appearance… and at 9:15, I saw him heading out the door in the opposite direction from us.
Our appointment with Radiation Oncology was for 11:15, but they were nice enough to move it to 9:30. (had to giggle because when we returned from seeing the radiation oncologist, we heard our main oncologist was looking for us)
The radiation oncologist had just stepped into our room when a nurse interrupted saying surgery was on the phone. He excused himself saying that he had to take it because those guys were hard to get a hold of. I told him I am the wrong person to say that too because of the trouble I have had getting a hold of people.
When he returned, he asked if I wanted to see Jesse’s scans. Yes, I would love to. I have been asking to see them since December. First he showed me the MIBG. Our home oncologist told me that looking at the MIBG was like looking at a 1950s TV screen. But on that screen there was no lighting up of the tumor sites. This means that the tumor isn’t putting out the hormone the radioactive isotope reacts with.
He then showed me the CT scans. The original tumor is shaped like a horseshoe around her spin. Her ureters are trapped inside the mass. All stuff I had been told before, but so different when you get to see it. The new growth has shrunk from 5cm to a little over 2cm.
The radiation oncologist (RO) told me they planned to stay away from the kidneys. And he would need a week to plan Jesse’s scans. She would need to be here for an MRI and CT Scan. He also said we could start treatment whenever we wanted. Since I want to be out of Memphis by July 25, 2014, we decided that planning needed to start June 23rd.
This did give me less time to get ready, but after 13 rounds of radiation, we will be able to come home. Also he is willing to try letting Jesse do radiation awake. If she can’t, they sedate their kids in order of age starting early in the morning. Brilliant!
After we finished with RO, we had to return to see the main oncologist. First we had to see the nurse practitioner. She told us that they are running low on humanized antibody. Then her next comment was “It’s a good thing you came when you did.” I told her we didn’t get to decide. The disease chose for us.
He is a very pragmatic person. He told me the tumor was not lighting up, but in his opinion if we were to do surgery, then we’d still find live tumor. He also said that surgery won’t touch her. Duh. Radiation from 2011 nixed that happening.
He suggested we continue some form of treatment at home. Either chemo outpatient or accutane again. (That will be easier this time cause she can swallow pills… but that also means return of the tyrant… )
I did ask about DFMO. In his opinion, there is not enough data to say one way or another. He has sent a patient to Nashville to be part of the trial. He said this is something I will have to talk with our home oncologist about since he will be taking over Jesse’s care again.
I asked about scans. He felt that maybe every other scan we could do at St Jude. I’m good with that. He also said that if her neuroblastoma relapses again, we probably will not be so lucky. She should have had the disease everywhere. Not just in 2 spots and her bone marrow.
He also asked why we were still in isolation. I told him to ask his people.
Finally by 12:39 ET, we were on the road to Virginia. And at 2am, we were in our house.
The next few days we spent getting everything ready to come back out with the camper. On Friday morning we left. Mike insisted on doing all the driving. We spent the night in Crossville, TN at a very nice KOA. The camp host owns a sugar glider (Australian flying squirrel that has to be very temperature controlled and is nocturnal), which he showed the girls. There was also a group of cheerleaders there. The girls made friends and really enjoyed the karaoke night.
We pulled out in the morning for Jellystone in Horn Lake, MS. As we pulled off the interstate, Mike was really impressed with how the area looked. After we set up the camper, we went out to have dinner. As we arrived at the restaurant, Mike wistfully commented that Jesse and I would have been much happier had we done this earlier. I wish I had thought of this sooner too, but I don’t think we would have been able to pull it off because of having to say in the hospital for at least a week during treatments.
This morning we got up early to have breakfast with Mike one more time before he heads back to our home. Dropping him at the airport this time was very different because Chris is staying with us. I’ll miss Mike, but I think the girls are not missing him yet because they have each other. By next week, this might be a very different story.
We stopped by Walmart to grab groceries. What is it about shopping that zaps my patience? I don’t think I got half of what I meant to get on the list because I just reached a point where I had to get out. As we were trying to leave, an employee stopped us. I guess this Walmart checks your receipts? But she didn’t instead it was on and on about how she loves St Jude’s. Then she gave us $10. I told her she didn’t have too. And she became ubberly insistent.
The girls did help me unload groceries. And Chris did a great job getting our food out of the cooler and dried off. Jesse held the trash bag for Chris. I think staying in the camper will be good too for teaching them to be responsible for their living space. (as we do at home… and I felt like I was loosing that with Jesse staying in a hotel).
I talked with Mike a little while ago. This is the first flight he has had to sit next to a very unfriendly person. He said she wasn’t happy to sit next to him, covered her face with a sweater, and complained loudly and verbally about hurting “someone” on the plane every time the baby sitting behind them cried.