Diane Jensen: Ticked off, more fever, finally accessed PORT

Thursday, July 16, 2015

Ticked off, more fever, finally accessed PORT

Fevers in the night, on antibiotics, couldn't access her PORT for some reason. They tried 4 times last night and 2 times this morning. Went to imaging to see why, they were able to access it. She is "ticked" to be here! Seems she would rather be at Bear Lake......can't imagine that. Same room as the 5 week stay, almost like home again.......?

She feels ok, it's just the fevers, so they won't release her, she is too low on neutrophils - "no immune system". It could indicate an infection that could be deadly, so they are careful to treat it quickly. So here we are, likely thru the weekend .

We spent a good deal of time on the phone today getting qualified for a new medicine she will start next week called Rivlamed. This drug will be used in conjunction with the Dacogen she will continue. This drug has a deductible of $2000. She is qualified to get the drug with a grant that brings the cost to $0.

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Diane is very thankful for any well wishes, even if she is not able to respond to all of them.

Diane's MDS Diagnosis

The hospital encourages visits when she is home or inpatient. Call first to insure she feels well enough at any particular time for visiting. Her immune system is severely compromised, so we ask you not to visit with young children or if you are ill. Currently she is an outpatient.

Myelodysplastic Syndrome (MDS) is a bone marrow disease much like cancer. If left untreated, it will eventually lead to the failure of the bone marrow (requiring transfusions) or Leukemia.

The only way to prevent this is undergoing a bone marrow transplant. Presently, her blast counts are increasing faster than expected but have not reached the level of Leukemia. Her blood counts are lower now and she has had a transfusion to help with this. She is to proceed with the bone marrow transplant now because of how rapidly the MDS is progressing.

Diane will enter the LDS Hospital's Bone Marrow Transplant Unit on Wednesday, December 17^th. She will undergo alternating rounds of chemotherapy for about 2 weeks. The chemotherapy will kill the blood producing cells, as well as her immune system.

Once the blast counts are reduced enough, then Diane will receive a stem cell (bone marrow) transplant. Diane’s sister, Tracey, is a half match and is to be the stem cell donor. However, effort is still underway to get a full match in time for the transfusion. The purpose of the transplant is to have the healthy stem cells replace the unhealthy ones killed by the chemotherapy (in the bone marrow). Once the transplant is done she will be on medicine to prevent rejection for some time (estimated 6 months to a year).

Mid term bone marrow biopsy coming up on (day 17) Friday, Jan. 2 nd. Find out if more chemo might be needed after the results of that test come back. Then another biopsy about day 35. Transplant could take place around day 42 the doctor said.

At this time (June 30) no transplant is scheduled. The disease became active again about mid June. Her blast numbers increased rapidly within just a weekend. Had they been able to do transplant (June 8) it would NOT have been successful, and she would have gone thru much trama for nothing. She has started another round of chemo aimed at controlling the MDS to lower blast levels.

Both the chemotherapy and the stem cell transfusion will be very hard on Diane. We ask for your prayers of strength and comfort on her behalf.

This site will be updated with Diane’s progress.