Jan 24, 2015

To recap where we have been. In October, we started traveling to Hershey Medical Center, which is about 4 to 5 hours from our home. Jesse was not eligible for the DFMO trail because she still has active disease. In November, they biopsed the disease. And we began a trial of 4 different drugs that were bio-statistically shown to maybe be effective against the active tumor.

During December we stayed in PA because they wanted to see how she did between the first two rounds of chemo. When we received the second on December 22, we headed home. And then we missed the next two rounds of the toxic chemo because her bone marrow is whooped. All the treatment has made it hard for her bone marrow to recover quickly.

We missed the scheduled dose of chemo on Monday because of this. But the doctors wanted to scan her anyway to see what has happened since the first round. And if her platelets and ANC were within the protocol range, then we’d also have chemo while in Hershey.

We arrived Monday by 2pm for her 3pm appointment. This gave us time to put on her LMX cream. The cream numbs the skin better if it can sit for an hour or more. And sometimes they really have to push to get the needle into the port.

By about 3:30pm, they were ready to put the needle in. Unfortunately the nurse doing it began talking down to me as if I had no clue. She’s never met me, and therefore had the impression that I was new to all of this. Her talking to me that way started to fluster me. She questioned what the port was. When I told her a smart port put in at St Jude, she asked why we came to Hershey versus staying at St Jude.

After getting her to agree to leave the needle in Jesse because of her CT scan on Tuesday and PET Scan on Wednesday, she inserted the needle. And the blood didn’t come back like normal. Fortunately after several flushes, it worked.

The lab was so busy on Monday that by 4:30, there were no results. The doctor decided to send us onto RMH instead of waiting.

Tuesday morning Jesse began the PET Scan diet. For some kids (and most adults) Hershey likes for the patient to only have 20 grams of carbs for 3 days prior to the scans, then 12 hours before the test only water. Jesse has shown she can’t do this; her glucose crashes too hard. So they have made concessions to allow her to do 20 grams of carbs the day before the PET Scan and 12 hours fast right before. This diet is still a butt-kicker for Jesse. By Wednesday morning she was throwing up.

At 11:15 on Tuesday, we went into the room for the CT Scan. Jesse was scanned within 5 minutes.

Wedenesday morning, we cleaned the room at RMH, got some of the ice off the car, and headed for Jesse’s PET Scan. At 8:15 the nurse injected her with the radioactive sugar. The sugar needs 90 minutes to get around her body.

The scan was completed about 10:30am. And I could let her carb load again. We grabbed some food from the cafeteria, and headed to clinic to wait for her chemo to be ready.

While the doctor didn’t have the official read on the scans, she showed me the PET Scans in the computer. And while we were looking the official read came in.

Since I had barely really seen the scans at St Jude, I missed that Jesse actually has 3 spots in her body of neuroblastoma. The original tumor wrapped arround her aorta and vena cava, a small spot in the muscle next to her right hip, and a cluster on the right side below her kidneys. This cluster is what I have mistook to be the one on her hip.

The CT Scan showed it as a lumpy bumpy mass. And measurements increased 0.1cm since the scans in November. This might be difference in who is measuring it or actual growth. The PET Scan is more startling. In October, the cluster is about the width of a pinky finger. In Novemeber, the width of maybe a pointer finger. The new scan, it looks like a miniature liver in shape. Plus there is questionable activity in the old original tumor.

This is a hard blow. We did go into this knowing that the drugs might work and might not work. And from the way that I keep hearing cumulative effect, I am wondering if she needs more of the drug to build in her system before it can deliver a punch? It’s hard because you’d love to see shrinkage. Plus we’d love to reach a point where Jesse is home a majority of the time and participating in activities like any other child.

The doctors wondered from the CT and PET scan if maybe there was extra activity due to immune cells fighting the cancer, but we have no way of know that unless we did a biopsy. And that is a lot to put her through. The positive is there are no new spots or lesions in her body.

I learned from the research nurse later in the day, the doctors planned to meet on Thursday to talk about Jesse, and we’d progress forward with chemo for now. The chemo will be at 50% or 75% dose due to how her bone marrow has responded.

Jesse finished her chemo about 3:30pm and received a dose of ativan. And once we had turned everything into RMH, we headed down the road for home through the snow. I am not staying at RMH once Jesse has had chemo any longer than I have to due to the inconsiderateness of  people coming in sick and smell of funky foods they want to cook (it makes Jesse gag). Between being at RMH and the PET Scan diet she lost almost 2.2 pounds and I lost 5 pounds.

I have noticed this round that Jesse is eating better and feeling better than the first two rounds. She has complained of her side hurting, but it has not slowed her down. The times before with this combination, she didn’t feel like eating on the second day. Overall if you were to meet her on the street, you’d think nothing was going on.

Tuesday we’ll visit clinic in Norfolk for blood counts. If her counts are elevated, I can stop giving her the GCSF shots. When I gave her the shot today, she actually bled, so Tuesday might be long due to getting platelets.

Note: the tumor is measuring 3.1cm in one direction. The comparison of sizes above are not actual measurements, just comparisons.