October 28, 2014

Jesse woke with a start and a scream at 6:30am. She often has nightmares, but halfway through the scream she stopped. She then told me she dream she didn’t have to have the bone marrow biopsy (which was scheduled for that day), and she went home.

At the time, I told her we’d be home by Friday, and they would give her numbing cream for the bone marrow biopsy.

At 8, we headed down to catch the shuttle. A gentlemen was waiting too. He was in the shuttle when we rode over Monday morning. We chatted while waiting. He is the father of 9 kids! The youngest was born with his stomach, esophagus, and heart in the wrong places. He had a surgery at Hershey and is currently recovering in the NICU.

At clinic, the doctor and research coordinator saw us really quickly. The doctor showed us the PET Scan results. Jesse still has active disease, therefore making her ineligible for DFMO right now. I think we knew that something was possibly still there. So I honestly I am not shocked.

The spot I think, but am not 100% sure, is in the location of the 5cm spot from last year this time. Currently it is 2.6 x 1.9cm.

As she was showing us the scans, the doctor told us about a study that Jesse can participate in. One that actually is being run by the same doctor for the DFMO study.

The study takes a biopsy of the active tumor via CT guided needle. Then they send it to Arizona for 2 weeks of DNA testing. This DNA is then put through a computer system looking at what drugs the tumor is susceptible to. They gave me a list of possible drugs. Ibuprofen is on the list of potential drugs she could take to try and make the active tumor inactive. It might not be one chosen for her, but as a parent who has heard for the last four years to not give her Ibuprofen because of her CVL and now port… it is mind blowing. It makes sense when you think about it because of being an anti-inflammatory agent.

Once the DNA sequencing is complete, a board of doctors from all over the world will meet to plan the best treatment for Jesse. They will pick 3 to 4 medicines. Then the plan will be sent to a reviewer to double check.

Since Jesse has active disease and we were not continuing the DFMO pre-study, the bone marrow biopsy was cancelled. They also cancelled the MIBG scans because she is not MIBG positive (meaning the tumor doesn’t light up on the scan). The CT Scan for Thursday was moved to 10:15am.

The research coordinator walked with us to CT scan. She had paged the head doctor of the Molecular Study for Penn State before we headed down. This lady also is the head at Hershey for the DFMO study. Our plan had been to meet her Friday. I am really impressed that she stopped what she was doing to meet us so quickly.

While we waited in the CT waiting room for her to arrive and the CT Scan staff to be ready, the fire alarms went off. The plan for the CT scan area was to stay put, and within a few minutes the fire alarms stopped.

A few minutes later, the study head doctor arrived. I really like her too. Very friendly. She was laughing about the time a fire alarm sounded while she was in the cafeteria. The doors in the cafeteria slam shut like a garage door when the alarm sounds. She witnessed an employee hear the alarm, see the doors start moving down, and successfully complete a baseball slide under the door.

She was telling us this story as Jesse and I were leaving the CT Scan. This was the first CT Scan were Jesse rode backwards through the machine. She had no trouble with it. In fact, she thought it was cool to ride backwards 🙂

We returned to clinic with the doctor and research coordinator. They began to figure out when to have the consent signed. I mentioned signing it then. I had had time to read the consent and talk to Mike. For us, getting this information makes sense.

We signed the consent. And the coordinator told me she would contact us with a time for the biopsy. They were hoping to get her in for Thursday. They also planned to contact St Jude about her bone marrow. If no disease showed in her bone marrow, they wouldn’t have to biopsy it. But I would not be surprised if we don’t have to do that.

Jesse and I headed out the door about noon to Red Robin (they have a gluten free menu!!!). Afterwards we decided to check out the campgrounds in the area. We found the Thousand Trails one near Palmyra, which isn’t far from the hospital.

After looking at the campground, Jesse asked to go to Hershey. She had seen the roller coaster near Red Robin. But because of the time of year, The Chocolate World was the only section open. Jesse really enjoyed the “tour” through the factory, especially the signing cows. Afterwards we checked out the store, and yes… we were bad.

As we were looking around, the coordinator called me because the biopsy couldn’t be scheduled until Tuesday, November 4. And they felt keeping Jesse in Hershey till then wouldn’t be fair to her. She suggested having Jesse de-accessed and going home. I really appreciate how they work to help their patients be home as much as possible. It means a great deal.

After cleaning the room at RMH, Jesse and I were on the road. I did make the mistake of ending up on the 495 Beltway at 7pm… Never again. Never. Hands down Northern Virginia wins the worst traffic award. And Jesse kept asking to stop at a McDonald’s. We did stop at the one in Stafford.

We will head back to Hershey on November 3rd. Once the biopsy is taken on November 4th (4 years to the day of her original biopsy), we’ll return home while the sequencing occurs. This can take 2 weeks.

While it bites that Jesse has active disease, we are looking at this positively. It is not affecting her quality of life right now. This will give us a chance to get ahead of it maybe. It might come back that nothing works against the active disease. If this is the case, it’s not the last option we have. We can continue irinotecan and vincristine at CHKD or maybe travel to Michigan to meet with the head head doctor of the DFMO study and the Molecular Study at Helen D. Voss Hospital.