July 15- I remember just in time to call Dr. Schock's office in the afternoon to make an appointment for Jordan. They had an opening for the first slot the next morning but I scheduled it for the morning of the 17th because he had forgotten his phone and I couldn't double check with him.
July 16- As soon as the office opens I call to try to get him in for the appointment that morning. We're there within the hour. Blood samples drawn and an MRI scheduled for the 24th.July 20- Dr. S. calls Jordan saying the blood test for rheumatory arthritis came back clear. Methodist calls saying they have a cancellation and we can come in for the last slot that night for the MRI.
July 21- Jordan gets a call in the morning saying that the MRI showed a growth in his back. Biopsy scheduled for the 23rd. My phone isn't working except to text. I get to my neighbor's phone to hear from Jordan. This was hard. Jill came over to give me Jesse's cell for the day and take Jaycee for me. I got out of the house later and just stayed with Jill for the day.
July 23- We find out that the spot is about 4x3x2 inches, it's on the back of his left sacroiliac wing. Biopsy goes well. Dr. Chee took 12 samples; he usually takes 4, making sure we wouldn't have to come back for another biopsy. Jordan reacts to the sedation medication with a fainting spell and vomiting. He's a little out of it also. We're told one of the samples looked like lymphoma. Another one didn't. Good news: lymphoma is very treatable. Lymphoma is cancer. I can't wait to get out of the car and into Jill's so I can cry.
July 24-27. Terrible horrible waiting. I call the doctor's office every day. The fact that I'm annoying does not bother me at all. Dr. Schock finally personally calls my cell phone to assure me that everybody is doing their job as quickly as possible. The tests they're running the laboratory take several steps and a lot of time. He is calling to the lab every day. My cousin Lexi comes over to bring an amazing gift and chat about nothing.
July 28. Call from Dr. S. calls. Preliminary findings: malignant small round cell tumor. It's definitively cancer. What kind? What to do? We don't know. Oncologist appointment scheduled for the 30th.
More horrible waiting.
July 30. Dr. S. calls. They think it's Ewing sarcoma. Oncology appointment. I interrogate the doctor. We don't get to go on vacation. Jordan's mom and my grandma take notes. Nothing is very definitive because he doesn't treat sarcomas. EKG, mediport, and PET scan ordered.July 31. We see the sarcoma specialist at Illinois CancerCare. I am encouraged by her hopefulness and the fact that she won't go ahead with anything until she gets a definitive second opinion fromt he experts at Harvard. She's had a few adult Ewing sarcoma patients in her practice that she's treated. She wants us to go on vacation. An appointment scheduled for the 7th with her nurse practitioner to go over all the results and the treatment plan.
July 31-Aug 2. Will & Lexi, Matt & Kirsten and U.Rick & A. Carol send us on a weekend to the Indiana Dunes. We relax, have fun try not to think, and are super blessed.
Aug 3. EKG
Aug 4. PET scan.
Aug 5. Mediport placed. More blood samples drawn.
Aug 6. Call Illinois CancerCare in the morning for PET scan results. "They don't have anything." But they need Jordan to come in for more bloodwork. Nevermind, they don't need bloodwork but the Dr. wants to see him. He calls to let me know and says I can come, but if it doesn't work don't worry about it. Nevermind, they want me to be there. I keep getting sick to my stomach in waves. Jenny Schick has almost left the pool when I run over to ask her to watch the girls. Everything is fragmented. "We're waiting for the blood results." "They agree with the diagnosis." "PET scan results very abnormal." "Multiple metastases to both lungs." "Stage 4." "Noncurable." "Worse than we thought." "Some patients live 2 years." I can't think right. I can't even walk out of there right. It's all jilty and stiff. We hug in the parking lot but don't really cry. We have to get back to the girls. I only cry after I try calling both my parents on the way home and can't get a hold of them. And then I sob.
Aug 7. Teaching appointment with the CNP about chemotherapy. Scheduled for Monday. It'll take about 5 hours. Next treatment is in 3 weeks in the hospital. It'll take 5 days. We may not get to go on vacation.