At 8 am PDT, Jesse and I headed for the hospital. Her labs were drawn, and we started our waiting for the results.
The results are not good. Her bilirubin total has jumped to 6.9. To put it bluntly, her liver is failing. And Jesse does look more yellow to me.
The doctor left to call our home doctor and nurse. She also ordered labs drawn to check Jesse’s clotting factors and other blood counts.
While she was gone, the research nurse helped me find a flight. We will leave at 10:10 pm PDT. Pass through Charlotte, and arrive in Richmond at 8:45 am. After securing the flight, she contacted the social worker. The social worker has arranged our ride to the airport, contacted the airline and TSA, and offered to help in any other way we can think of.
As we were confirming those details, the doctor popped in to let me know she was gathering Jesse’s records from Seattle for me to carry to CHKD. I asked her about giving Jesse a shot of neulasta, much to Jesse’s dislike. If we can’t do the T-cells, might as well cheat on the ANC while we can.
Her labs returned shortly after the doctor left to check with pharmacy about whether Jesse could have neulasta 3 days off chemo. (Luckily they said yes.) Jesse’s hemoglobin has dropped to 7. Her blood clotting factor produce by the liver are very low. We decided to give Jesse a blood transfusion. The doctor recommended we go to our home clinic on Friday to check platelets. She feels that Jesse’s platelets should stay about 30 at this point (they are 71 currently, but dropping).
We are waiting for blood to finish. We will then return to RMH, clean up, repack, settle our bill, and wait for the cab to pick us up.
Had to laugh (though I really hope it is not the truth) at 4:30 pm because the fire alarm went off. Now we have been at Seattle… they have had a fire alarm. Can’t seem to go anywhere without one.
They have given Jesse benedryl for nausea, and she is sleeping. I am pretty positive that she barely slept last night.
I have purposely waited to make this post live. Why? I am honestly not in the mood to talk a great deal currently about what is going on. What am I going to tell you besides what I have posted here?
I get that this is a real bummer. I was looking forward to her and Chris growing up more than anyone (besides Mike… and that is questionable because he fears them deciding to attend an out-of-state college), but God is calling her home. I can only place this in His hands for His decision to be made. I am thankful for the time she has been ours. And I am still not sure how much time she has. I do know, I do not want her to suffer. And I don’t want to trap her here on Earth in a body that is failing her in very painful ways when she is obviously ready to go.
I do hope that she has a few more moments of feeling good to enjoy and make great memories. And I am thankful for the week of camping we got at the end of June.
Thank you everyone who has bought a shirt to help support our medical costs. And thank you for donating to the GoFundMe account. We will still have medical costs at home from treatment to help keep Jesse’s pain reduced. Plus other hospice type care she will receive in the coming days.
I don’t view this as giving up. Jesse’s T-cells will be used for research in hopes that maybe, just maybe they will save the life of someone else. Her involvement in all the research studies will help other patients. The cure sadly might not be for her, but hopefully her suffering will save someone someday. And we have tried to give it our all.