10:00 am Bennett’s temp at 8 was 99.3 and at 4 was 98.4. He didn’t hit 100 degrees yesterday so hopeful that is a good sign. His ANC really dropped today, it is 210 from 688. An ANC below 500 is neutropenia. A severe chance of getting an infection or difficult to fight it off. His WBC is 1.5 from 1.6 and the neutrophils are 14 from 43. Hemoglobin is 9.5 from 9.4 and platelets are 71 from 80. Unfortunately we are not going in the right direction with his counts. Bennett is still asleep. We expect to hear back on some of the tests today.

*1:00 pm Bennett’s temp at noon was 98.8. All tests so far have come back negative. Oncology and infectious disease Dr.’s are thinking that he has a different viral infection that is not one that they test for. Or a possible fungal infection that cannot be detected. Even one Dr’s said they need to come up with more viral tests. It’s possible that the viral infection is dropping his counts. They talked about us going home today until his ANC dropped in the danger zone. “When and If” he continues to feel good, no temp over 101.3, and ANC is over 500 than we will be able to come home.

It’s possible that the Dr. wants Bennett to continue on the amphotericin for a total of 14 doses. He is on his 9th dose. So if we do get to come home, he might continue with this drug every other day in the clinic.

Below is an update on the test results:

1. blood culture -negative, 2. Immunoglobulin level checked – IgG normal range is now at 1,221 after transfusion was 396, IgA low at 42.6 and IgM low at 14.3 (received IVIG infusion last week) 3. Echo cardiogram of his heart – normal 4. biospy of his leg – nothing yet 5. check antiobodies that fight off EBV virus – need to check 6. ultrasound of his line (they decided not to do this) 7. Ferritin blood test – was high at 2,700 – normal is 200. (this controls your iron and will be elevated if you have an infection – this confirmed that yes he did/does have an infection.) 8. Triglycerides blood test – normal

1. cryptococcus (fungus) – negative 2. mono tests – EBV and CMV – negative 3. PPD for tuberculosis – pending 4. Ehrlichia (tick related) – negative 5. urine culture – negative 6. nose viral culture – negative so far 7. stool culture – (virus, bacteria, C-diff) – negative 8. Tularemia (rabbits) – negative 9. Galactomannan (fungus) – pending 10. arbovirus blood test (west nile mosquito) – pending 11. Bartonella (cat scratch disease) – pending

This website has been my resource and notes to reference back too since his diagnosis. Even one of the resident Dr’s refers to this site to answer any questions she has about Bennett. Thank you for following his progress and your uplifting prayers.

*5:00 pm Bennett has had a good afternoon. Every week they have to de-access his port and re-access it with a new needle. When the nurse de-accessed him today, he took a shower for the first time in two weeks. He walked around 9th floor and went to the 8th floor garden. He thought rotisserie chicken sounded good so I went to Schnucks and he ate a chicken breast. He is working on some school work. Here is a pic of him at the garden. Since his ANC is so low, he has to wear a heavy duty mask when he is not in his room.

*10:00 pm Bennett’s temp at 8 was 99.5 and at 4:30 was 99.7. Apparently his body is trying to fight off something or his temp would be normal. We are so thankful that it isn’t any higher. It was so good to talk and laugh with Bennett this evening. It’s such a relief to see him smile. He hasn’t felt like it in several days. We watched CSI, Without a Trace, and the News tonight together.

Thank you for your continued prayers. We are praising God for seeing us through this and carrying us along the way. We pray that his counts begin to recover and whatever he had goes away for good.