Day 52 at St Jude

I started the day with hooking Jesse up to the eclipse for her dose of meropenem. Jesse slept, which for mankind is a good thing. If she doesn’t meet the required sleep, she becomes difficult. And getting up early doesn’t really mix with this night owl.

I woke her up about 7:30am to head to St Jude. They have asked us to be at the medicine room by 8am during this treatment. It was almost 9am before they called her back. I took advantage of this by grabbing some coffee and Jesse’s Zantac prescription. I gave Jesse a dose. The Zantac is to help her stomach and GI tract with the itchy feeling the antibody can bring on.

Jesse noticed some heart bag crafts on the table when we walked in. Once she swallowed her telemorizide pills and drank her glass of water, we walked down to make the craft. Turns out it is a bag. And she wants her sister to have it.

After 45 minutes the nurse found us for Jesse to start the irinotecan. She gave Jesse benedryl and tylenol as pre-meds for the antibody, then started the hour infusion. I ran out to grab Jesse some tea and see about getting her meropenem a cold bag. Turns out policy doesn’t allow the medicine room to put medicine in their fridge for your kid.

I noticed that doors were closed going down the hall that are normally open. As I opened the door for D Clinic I saw the fire alarm lights were blinking and the metal door for the D Clinic desk was down. The same metal doors shuttered the pharmacy windows too.

Since I couldn’t get the cold bag, I went to get Jesse’s tea. The pharmacy workers were standing in the hall. I went in the cafeteria to get water, and all the cafe workers were out of the kitchen. The checkout lady was complaining that the problem was over and people needed to get back to work. I asked her what happened, and she said someone smoked something up in the kitchen.

I returned to Jesse. A photographer was waiting for me to come back. He wanted to take pictures of Jesse with a nurse for the cover of the Promise magazine. The nurse is being featured in the April issue of the magazine that is in circulation for 180,000 people. The photographer took a bunch of pictures, and Jesse did reach the “I’m over this point.”

After they left Jesse wanted to go back to the play area. I was feeling slightly frazzled because I needed to get some work done. Finally it dawned on me to take my computer to the play area (duh). Jesse played for a bit before wanting to return to the room.

It was time for the antibody to start. The first 2 hours passed quietly, but after that Jesse began complaining of pain. We talked with the nurse practitioner and her suggestion was for me to push Jesse pain button. I wasn’t comfortable with that because Jesse was complaining the medicine made her feel dizzy.

I don’t think the nurse was comfortable with that either. She was able to get the nurse practitioner to raise Jesse’s rate to 0.2ml of diluadid. This did cause Jesse to go to sleep. And Jesse slept through the last 2 hours of the antibody.

While she was sleeping the research nurse stopped by. And she was the one I needed to see. I asked her about why we weren’t staying with the cyclo/topo if if was working. She explained that normal cells have a life cycle of 30 days. Cyclo/topo hits cancer cells at one stage, and the irinotecan and telemorizide hits at another point in the life cycle of the cell. This made me wonder what a life cycle of a neuroblastoma cell is. She said that is the question the researchers are working to answer.

I asked her what the percentage of shrinkage in Jesse’s tumor was and what were they measuring. The main oncologist has told me the original tumor is included in the measurement. She didn’t know, but told me she would return to her office to find out.

I asked her how much Jesse’s counts will drop while we are doing this round. She told me that she should not get below 500 and this means less GM-CSF shots. Yeah!! But she warned me that during rounds 5 and 6 with the ICE chemo (some chemo with an i name that is not irinotecan, carbplatin, and etopside) she will fall in counts and stay down longer… potentially to day 30 of each round.

I asked her about the bone marrow biopsy and pain Jesse had this time. She told me with each bone marrow biopsy the scar tissue makes getting the next one more “adventurous”. She also told me the GM-CSF shots cause the bones to harden.

She also told me that the humanized antibody with this chemo has been very effective for patients. I know that she was trying to help give me a glimmer of hope. I greatly appreciate it, but I am also very aware that each child is different. And their outcome will be different. We just have to keep praying.

After she left, the nurse practitioner came back to see how Jesse was doing. She felt that since Jesse was sleeping the increased basal rate was effective. The first day of antibody is always very painful. We discussed reducing her rate when the antibody was done for the day and trying that rate for Day 3 (that’s today… Day 53). We’ll see how it goes.

Unfortunately the nurse practitioner forgot to communicate this to the nurse. But the nurse is really good. She asked me and called her to see what was the plan. I could tell the nurse was a little frustrated the nurse practitioner didn’t find her to let her know what was the plan. And I don’t blame her at all for the frustration.

The research nurse called me back to tell me that the tumor had shrunk by 32%. They are measuring the 2 in her lymph nodes, in the pelvis, and what appeared in the bone marrow. The bone marrow has come back clear. She also gave me the HVA and VMA numbers. These are catecholamines they measure in the urine. They were not able to get a VMA number because she didn’t give them enough urine last time. The HVA and VMA allow the doctors to know if her tumor is starting to grow (this is how the research nurse explained it to me).

I greatly appreciate her taking the time to give me that information. And from now on, I am going to hunt her down when I have questions. She deals mainly with the GD2NK study.

Jesse and I hung around till 4:15 because they needed a lab an hour after the antibody finished. They also needed a lab 8 hours after the antibody stopped. We opted to go back to RMH to wait for 11:11pm.

At RMH, a group who is raising money for the house (I won’t say there name because the 2 times I have interacted with them, I have been a little disgusted) was hosting a coffee mug painting. I had a sneaking suspicion this might be a sweatshop set up. Kids with cancer paint the mugs, they take the mugs and auction them off to raise money. I was hoping that maybe they would let Jesse paint one for herself and one to auction.

I was wrong. And Jesse was extremely disappointed. From now on when I see their name, we will not be participating. I feel with this group it is all about making themselves look good and not about truly helping the kids feel better. They stood in the kitchen announcing the last time they were at RMH, they’d raised $58,000 for RMH this year. Yet they did the cheapest possible dinner they could with the least amount of work. Other groups that have come in have come with true love and caring in their hearts. This group had only one person who interacted with the kids. The others just gave the vibe of “I am here and you should bask in my presence.” And to have a meeting in the kitchen touting how much you’ve made was slightly tacky.

And for the cup painting, I overheard someone ask what the group wanted done. I am not sure if they did have a representative of the group there. But I have a serious suspicion they didn’t.

We returned to our room. Jesse called home. While we called, her stomach got the better of her… and she got the bedspread. Afterwards Jesse told me she was hungry and wanted chick peas. I took the dirty bedspread down to the window and stopped back by the kitchen to get her peas.

Jesse ate them well, but in an hour… they made the return trip. I was better prepared this time. Poor Jesse kept apologizing for throwing up. I told her it was fine that hopefully this means the new chemo is working hard. I wonder if hearing that guy cuss his wife on Monday in the restaurant has stuck with her. Jesse is pretty intuitive and doesn’t miss much. And I did not raise my voice in anyway while she was ralphing. I did run to grab some bags.

At 10:50, we head back to the medicine room for Jesse’s 8 hour labs. Since she took a nap earlier and they only need this lab on Day 1 and Day 4 of antibody, I didn’t mind taking her over. And it was easy peasy. Got the lab, hooked on the meropenem, and back at RMH in less than 20 minutes.

Jesse was out. I had to wait on Jesse meropenem to finish and laundry. While I was waiting, I checked the schedule. Tomorrow we have to be over here at 7am for labs.

Day 53 start

I got Jesse up at 7:25am to come over. She told me that she was hungry, but once she smelled the cafe… the hunger went away. The medicine room nurse called us back at 8:10. We can’t start till 9, but at least she’ll let us wait back here. I thanked her. She is totally on the ball. I so appreciate that.

Jesse started complaining her stomach hurt about 8:55. Instead of giving her the telemoirzide chemo pills (2 pills), the nurse gave her a dose of ativan. After the ativan completed, Jesse swallowed the pills. The big concern was her being able to drink the cup of water required with the pills. Jesse did it! And knock on wood we are an hour out, and everything is still down.

We are getting ready to start the irinotecan. Jesse is complaining of being dizzy due to the ativan. And she has complained of pain at the bone marrow biopsy site. Since she has diluadid on a pump, I had her push the button.

She is really excited to get the mail today because I ordered her a backpack for Fred (aka the pumps and IV bag). The backpack will hopefully be easier for Jesse to carry. I’m glad I let her decide. They had a ladybug and a monkey. I thought she’d choose the monkey, but she went with the lady bug 🙂