July 5 – 7, 2015

July 5, 2015

Jesse’s chemo completed at 3:30 pm. She still had 4 hours of hydration to help her body get rid of the excess chemo. Plus we needed her creatinine to come down. If it was .7, this might stop the T-cell give back.

At 9:30pm, we were finally able to leave. And the great news is her creatinine is .5. It has not been .5 in months.

I have also noticed that her back looks a little pushed out, but this could be from pain. Her abdomen also seems more dissented.

We arrived back at RMH around 10 pm. Happy to have some privacy and a little more comfortable bed.

July 6, 2015

Jesse’s appointment was not until 3:15 pm PDT. But we ended up over at the hospital early because we were bored. And a good thing we did,  Jesse’s lab were scheduled for 2:20 pm.

I am not impressed with the scheduling system here. I feel like it leaves off labs. I wish they also had an online version. As large as this place is, it would make it easier.

I happened to look at Jesse’s eyes once while we were outside, and thought they looked yellower than normal.

At almost 4 pm, a nurse came in with fluids. This was not planned, and I was feeling a growing concern. The nurse said the doctor wanted Jesse to have a bolus of fluid over 30 minutes.

As this was running the doctor came in. The news is not good.

Jesse’s bilirubin has increased from .9 to 4.8. The bilirubin conjugated was 2.5. If this number is not 2 or lower, Jesse can not get her T-cells back. the doctor was hoping the bolus of fluids would thin her blood out. But unfortunately, it increased it from 2.5 to 2.8.

She also prescribed ursol. The pharmacist told me this is a drug to break up the cholesterol in bilirubin. The doctor is hoping this medicine will work to reduce her bilirubin. But she was honest with me in saying she is not very hopeful.

Her bilirubin climbing this high so quickly is not a positive sign. The doctor strongly feels based on scan findings the cancer in her tumor is increasing quickly and starting to block the function of the liver. And unlike the kidney where we could do dialysis, we don’t have many options with the liver.

Another big problem with having cancer in her liver and increased bilirubin is ineligibility for other trials. Many drugs need the liver to help clear them out of her system. Liver transplant is out because of the disease in her body.

So the plan is to take the ursol, wait for the doctor to call on Tuesday, and labs potentially on Wednesday. If the numbers are right, T-cell give back on Thursday. If they are not right, we will be heading home.  The doctor told me she doesn’t want to waste our time waiting for Jesse’s counts to recover if we can’t do the rest of the T-cell trial.

July 7, 2015

We are just hanging around waiting for a phone call. If I don’t hear from them by 3 pm, I am taking Jesse over. Here they don’t allow parents to hepranize their kids. I wish they would. Feels like we have a 10-story-3-building ball and chain attached to us.

Jesse has asked for Subway. So after we hear from the doctor, or crash clinic, I am going to walk her down to Subway. She will probably take two bites and be full.

She is telling me her pain level is 4 today, but she has also asked for diluadid twice. Earlier I thought she was asleep. 30 minutes later she opened her eyes, and said she had tried to sleep but could not. I could have swore to you she was snoring, but she could tell me what was on the TV.

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Thank you to everyone who has purchased a shirt. We really appreciate the help 🙂 Thank you also to those who have donated to Jesse’s GoFundMe account.

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To help with medical cost and travel expenses, I have created a t-shirt campaign. You can also get a sweatshirt, tank top, and kid sizes.

teespring.com/jessegracesjourney

This will be open until 7/9/2015. 

And a friend has created a GoFundMe page for Jesse. Melonie created this for us when we first traveled to St Jude.

***If you would like to donate to the GoFundMe, Click Here

We really appreciate the help and prayers.