October 27, 2014

Yes I know totally delinquent in posting. I honestly had a little breakdown. We got home and save for going to clinic, we got to pretend that Jesse was like everyone else.

The last scans from St Jude show the light has stopped appearing on the MIBG. As the doctor put it, “This doesn’t mean there is no active disease… you will need to either do chemo or find another clinic trial. But we have nothing else for you at St Jude.”

And with that, we came home. Jesse started school with her sister and friends. She is so happy to be in the classroom with everyone.

I began talking with our home oncologist about what we can do. I have asked about the DFMO study before. He was nice to send the information he has on Jesse to Penn State Hospital at Hershey, where kids are being enrolled right now. However on the first send, we couldn’t go because Jesse had been off of chemo too long.

Our oncologist gave her a low dose of irinatecan and 1 dose of vincristine to get back within 30 days of having chemo. Jesse completed the treatment on September 27, 2014. She had no remarkable side effects.

He sent the scans again, and we waited to hear if we could come for scans to see if Jesse qualified for the study. And in the beginning of October, we were contacted by Penn State.

Before heading to Penn State, we headed to Shenandoah Valley Campground. We had 7 kids with us (must have lost our minds), 4 adults, 2 dogs, and 2 campers. Two nights all the kids and dogs ended up in our camper. Making memories, making memories 🙂

The kids (and I did too) had a blast trick or treating, dancing, and hanging out. Jesse did have a harder time. On Friday she had to start a diet where she could only have 20g of carbs for 3 days. The reason was because of a PET Scan scheduled for Monday. The scan will show if there is active disease by taking in the radioactive sugar used in the scan.

Basically the diet is the equivalent of the Atkins diet. The only fruit she could have were 5 to 10 strawberries a day. And by Saturday, Jesse was starting to feel the effect of no carbs. I think the person that saved her from being really down for the day was Emily Hubbel.

Emily has been fighting neuroblastoma for almost 4 years straight. Her family ended up camping across from us, and the girls really hit it off. For Jesse, having another little girl fighting the same thing to talk to has been huge.

Jesse and I arrived at the Ronald McDonald House in Hershey yesterday at 2pm. We left our friends at almost 10am in Verona, VA. The drive was wonderful, but hey anything less than 13 hours, makes me happy 😉

Jesse was feeling pretty punk when we arrived, and in fact she slept for the last part of the trip. I was really surprised at the lack of gate around the facility. Plus it feels much more open and friendly. There are no assigned kitchens, tons of volunteers are in and out, and good grief the food that pours into this place.

The volunteer who checked us in was interesting. Another couple leaving who didn’t speak English as a first language were trying to ask her a question. When they didn’t understand the words she was using, she would talk louder instead of finding another word to use.

Once I had our belongs upstairs, Jesse and I ventured to Karns for some food she could eat. But when I gave her a slice of cheese, it came back up. While she was puking, a little boy kept coming over to her telling her to stop making that noise. His mother or whatever just kept looking at her phone. From the bracelets on her arm, I think she has a baby in the NICU.

After dinner, we retreated to our room. Jesse was out by 7:30. Her falling asleep early always scares us. But in a way it helped. She was really sad not to be with her sister and dad last night. And I couldn’t get her to understand that we will only be here till Friday late morning.

I had her up at 6:30am to catch the shuttle to Penn State. We were downstairs at 6:40am even though shuttle doesn’t run until 7:10am. But there was one right outside the door. Jesse and I hopped in for the quick ride over.

At 7:45am, clinic was open. After registering, Jesse and I sat down to wait for the nurse. Suddenly she looked at me said she was sick and threw up. I didn’t even have time to react. And as she was getting sick, she kept apologizing. And I kept telling her it was okay.

The nurses and clinic staff were super sweet. They found Jesse some clothes to wear. Then we met with the research coordinator. Super nice, very knowledgeable, and just a great person. We had to wait for the doctor to come for the consent. With Jesse getting sick and waiting on the doctor, the PET Scan time was pushed back an hour.

Once we signed consent, Jesse’s port was accessed. All the kid said was “ow.” I did learn something very interesting. The bio patch that Jesse had around her CVL in 2010 through 2012 is full of cloroprep. If I had an idea… I totally forgot. Jesse breaks out in blisters if cloroprep is used on her skin.

When the blood was drawn, the coordinator walked with us to Nuke Med. The Nuke Med here is in the adult hospital. About 10:30, the radioactive sugar was injected into her line. The scan was started at 11:55am. First they did a CT scan, then I was allowed in the room with her.

For the 25 minute scan, Jesse was asleep. And I had a hard time waking her up. When the technician entered the room she kept saying Jesse’s glucose was low, and she needed to eat.

Since I figured she wouldn’t tell me the numbers, I returned to clinic to ask for a print out. Instead the doctor took the time to met with me again to go over them. Really impressed by that. Jesse’s glucose was 35!!! They really prefer for it to be 70. And it explains why she got sick twice and fell asleep so easily.

By the time we saw the doctor a second time, Jesse had had sugar and had perked way up. Actually becoming quite talkative. The doctor also promised to have her out of Hershey by 11 or 11:30am on Friday to make it home for trick or treating. Really hoping that happens. Really praying that she doesn’t get sick or run a fever. Fever could cause us to be admitted… and stuck.

For some reason the blood cells broke messing up testing the first time, so the doctor asked if we could get another sample. Jesse agreed, and she has really taken a liking to the nurse in clinic. Not sure if it was the nurse mentioning she lived in Ashland, VA for several years or the fact she gave Jesse pretzels… might be the pretzels.

Jesse and I walked back to RMH since it was less than a mile away. Plus it was a nice day. It amazes me how much green space they have at this campus.

Jesse and I snacked on food in the kitchen. And she has been talking about the pizza that is for dinner tonight. And she is worrying about how she is going to sleep since they have left her needle in her port. Tomorrow she has bone marrow. They will put her to sleep for that, but she is still worrying about it.