June 2, 2015

Jesse and I left late this morning for clinic because we wanted to put Chris, Emileigh, and Landan on the bus.

And we didn’t have to be there long. We arrived at 10:30, and left by 1:30pm.

While Mike and I talked with Jesse’s doctor, Jesse slept. She is exhausted.

We talked about the pd1, the t-cell, and just trying to make Jesse comfortable with chemo while we can.

The pd1 inhibitor needs an immune system to help fight the cancer. Jesse’s immune system has been really beaten up. The t-cell will require knocking her immune system completely out, but rebuilding it with the re-engineered t-cells. And just giving her chemo will allow her to stay home, but the it will eventually stop working.

The t-cell and pd1 are still in phase 1 trials. There is not enough data to say they will work. The first leukima patient to get the t-cells was a success. The second one was a raging flop.

One factor that will weigh in our decision is whether or not her t-cells actually grow. And this we won’t know until after June 11th.

We are still wondering what the best option is. And we need to include Jesse in this conversation. Does she want to keep fighting or does she want to just try to be as comfortable as possible for however long she has? And we need to figure out a way to have that discussion with her.

I spoke of quality of life over quantity with our doctor. He commented that they can be the same. Even though we know the neuroblastoma is doing something in her body, we still don’t have a finite date of when the end for her is.

We also need to get counseling for Chris. This has been really hard on her. And the extra worry she is witnessing in Mike and I these last few days probably doesn’t help. Plus as things either improve or don’t, the potential for her to feel left out is there. She has witnessed Jesse get a lot of things because of being sick. I don’t want this to be a crutch for why she does drugs later in life.

Tomorrow I will talk with child life for their opinion on how to best talk about this with the girls. And our nurse mentioned they have a list of conseling resources.

Jesse’s pain in her back and side have remained at a level 2. I can’t get her leg below a level 5. She is currently on neurontin, fentyenol, and oxycodone. I think the day of a pump for pain medicines is coming. She is currently carrying backpack Fred for fluids. Willow is petrified of backpack Fred.

I have also noticed in her sleep Jesse has begun sweating more and more. Today her head was completely wet. And today she has opted to not eat anything. Her weight increased from 18.6kg yesterday to 19.7kg. We think this is because of the fluids.

Tomorrow we will return for clinic and to get platelets. We started this chemo to deal with her pain, and her body wasn’t really ready.

If you see Jesse during this period, do not say anything to upset her about her cancer. I am not sure of what she understands at this point. And I will get really angry with you.

Also no acting uncomfortable or sad, she hates it (and I do too). She has given us a hard time for making long faces. Plus with all the pain meds, this easy aggravation is amplified. And if you were like her would you want someone acting all weepy and sad? I’d rather try to have as many happy memories as her body will allow her too.

 

Posted in CHKD
One comment on “June 2, 2015
  1. suzanne says:

    Love you Soosan

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