Potential for a St Jude Study

Thursday, December 12, 2013

We meet with Jesse’s oncologist at CHKD. The news is not good. Jesse’s neuroblastoma has reoccurred.  Our doctor gave us three choices:

• Do chemo at CHKD
• Undergo MIBG therapy: Here they take the MIBG radioactive isotope, make it more radioactive, inject in Jesse’s body, and she has to sit in a lead lined room for 3 days by herself. (my opinion this would only happen if they kept her sedated during that time because she would have high anxiety, but if we had to do it, we will do it.)
• Go to St Jude to see if Jesse can participate in a clinical trial of humanized antibody, chemo, natural killer cell therapy

Since the oncologist came in with the paper for the study already printed and told us this was the most aggressive thing we could do, Mike and I felt we should give it a try.

With the decision made to give it a shot, he got everything together about her cancer history and sent it off.

Friday, December 13, 2013

At 1:30pm, the call came from a very nice man that we would be seen in St. Jude’s D clinic on Monday. Mike and I got everything ready for Jesse and I to leave Saturday morning.

Saturday, December 14, 2013

We left at 7:15am from our house heading to Shelby, NC where my aunt and uncle lives. My mom rode with us. We arrived around 3:30pm. Jesse had a great time playing with cousins.

Sunday, December 15, 2013

Around 2am, she began screaming of the pain in her leg and back. We gave her some pain medicine, and tried to go back to sleep.

By 7:54am, we were on the road to Memphis. It was a long drive for Jesse, and not one I think I can make her do again if she is excepted into their study and chemo is started.

We arrived in Memphis around 6pm EST, but being on Central Time now it was 5pm. We grabbed some snacks from Kroger, then headed to St. Jude to register. We got lost, but figured out how to get going the right way after stopping at a shady looking place in Memphis.

We registered with the registration. Then Jesse was taken to the Medicine Room to evaluate her. She was really edgy and in pain, and her blood pressure reflected that. After clearing her for housing, we came over to the Memphis Grizzlies House on campus.

This place is impressive. They have allowed us to stay in a room with a living room and separate bedroom. You can do laundry for free, and they have a continental breakfast in the morning. We basically unpacked, order a pizza, and went to bed.

Monday, December 16, 2013

When I looked out the window in my first daylight in Memphis, I see a huge pyramid. Wonder if we could see the Mississippi River if that thing (which the shuttle driver said was going to be a Bass Pro) wasn’t in the way.

We headed over to the main hospital at 7:45am. We were registered, and then a nurse came to show us around the hospital.

First we went to patient services to make sure our hotel stay time and meal cards were correct. Then she went to have her picture taken. She was such a sourpuss for it. I don’t blame her, I was getting overwhelmed at that point too.

Then we went to D-clinic for assessment and to met our nurses and doctors there. Kind of wish I could have put Jesse’s nurse from clinic in our suitcase and brought her along.

They asked questions, looked at Jesse, talked about placing her CVL. I’ll be honest, I am far from happy to see that thing again.

They also prescribed morphine for her leg pain, zofran, miralax, SSKI drops (not a fan of how the pharmacist wants me to give her those), and a new medicine to help her not strain.

Then we went to triage to have a line placed in her arm. Many people came into try to help, and I am not sure if that added to Jesse’ trepidation too… She did amazing job of holding still. Hopefully it will last through till tomorrow.

Afterwards we were able to get lunch. As I walked away to get us some ketchup… Jesse spilled her entire drink all over her front. There she is scream crying in the middle of St. Jude’s. While I looked for someone to clean up the mess, Mom came back to our room to get Jesse a change of clothes.

At this time, I’d had it with her attitude all morning. I know it’s wrong, and she is miserable… but I had reached my limit. I think I upset her more by calmly telling her that I had had enough of the attitude. When the doctors and nurse talk to her, I told her she need to respond back. They are there to help.

From lunch, we went to C-clinic for consultation on the line placement, meeting with anesthesia, and c-clinic child life. We talked with her about getting Jesse to do the MIBG without sedation.

We tried to go to patient orientation, but the lady had to reschedule. Part of me is okay with that… the other a little frustrated because is something else that will be added to the schedule later.

Afterwards, we dropped a sleeping, overwhelmed Jesse with Mom in a lobby. Then we went to get her medicines from the pharmacy, saline to flush her line, and her schedule for tomorrow.

Then we got Jesse to triage for 2 more labs from her line.

I am exhausted, overwhelmed, frustrated (and tired of having a hard time finding food that is gluten free so I am not itching because I have huge bumps all over because of eating gluten… found that out in July).

I also have noticed that married families must be something this place hardly sees… every questions about Mike began with “Do you have custody papers?”

I’ll stop. I’m grumpy. And everyone has been very nice, just really busy, and in a hurry. And once we get the routine down this won’t be so painful and overwhelming.

Tomorrow, we have ECHO/ EKG, then CVL placement.