May 26, 2015

Jesse had a really hard time getting comfortable last night to go to sleep. And this morning she was complaining of pain in her right femur and both hips. During the day that pain has now migrated back to the right flank. I have been giving her oxycodone as much as allowed, but it is not really touching the pain.

Last night Jesse and I decided (with conveniencing from me) to call early about getting a bolus of fluids. I have been pushing her to drink all weekend, but I was concerned that it was not enough.

As we were walking over to hit the Starbucks, the research nurse called asking us to come early for labs. And as feared her labs showed her creatin to be 0.7. At home the last few weeks it has been 0.6, and month before last month it was 0.5.

This creatin is a test of the kidney function. And a huge deal. Jesse’s kidneys are both swollen (it’s called hydronephrosis). This swelling prevents them from draining correctly. And having her kidneys empty is a big deal because many of the chemos Jesse has been exposed to are brutal on the kidneys.

Another reason it is a big deal is the protein they will be attaching to Jesse’s re-engineered t-cells. Our bodies have certain proteins on our organs to keep our immune system from attacking and killing our organs. Neuroblastoma, sadly, is wise enough to have the same proteins. Since this is new treatment, the researchers want to make sure Jesse’s organs are functioning as well as possible in case the immune system gets confused and attacks the organs. Also I learned this weekend that your kidneys help with regulating your blood pressure.

The other obstacle in our way for having the aphresis line placed are Jesse’s platelets. Interventional Radiology will not do surgery if platelets are below 50. Jesse’s this morning were 48…. But they can give her a bag of platelets. And this will allow us to move forward.

While Jesse was receiving the bolus of fluid, the doctor ordered a renal ultrasound to make sure she did not have an obstruction. We also discussed what we could do if Jesse did not qualify for the t-cell trial.

Merck has developed a drug called a PD1 inhibitor. The PD is short for Programmed Death Cell. Our organs also have a version of this protein, which tells the immune system not to kill it. Neuroblastoma (And melanoma – the cancer this drug has been very effective against) also have the same protein to save it from being killed by the immune system. Seattle has a trial opening maybe for this one, and if the t-cell doesn’t work we have the option of having Jesse’s tumor tested to see if she carries the marker for that protein. I am not sure at this time if we will have to go that route. And I am not sure how much we’ll get to have that drug at home (which if they would let us… oh how wonderful that would be).

Around 2:30pm PT, Jesse and I headed down to ultrasound. An hour later, we were back upstairs. From the ultrasound we learned that Jesse’s kidneys are a little more swollen than the ultrasound in March, but not changed from the CT scan on May 15.

I have a feeling that if we do not find something to stop the tumor and cause some shrinkage, Jesse will have nephrostomy bags again. Not something I want for her at all, but we might not have a choice.

All of this is excruciatingly unfair to her. She should be having fun at home with her family. And repeatedly she says to me, “It’s not fair” followed by “I’m glad I’m the one that has to do this, and not you guys.”

After talking with the doctor about her ultrasound, they ordered some platelets to help Jesse with tomorrow’s procedure. The trouble is… her temperature at 5:30pm PT was 37.6. Fever is considered 38.3. And here, it is a hospital stay no matter how high the ANC. Please Lord, cut the kid a break. Please let her temperature stay below 37.2 or 37.3. I am really concerned that her kidneys are trying to get infected.

We’ll finish platelets in about 30 minutes.

Thank you Norge School and other family and friends for your help and support in getting to Seattle to try this study for Jesse. We really appreciate your generosity.

Also I have decided after being in Seattle that I am glad I am not a weatherman… Poor guys, they called for sun all weekend… and it is just now shining on us.