Thursday AM Update

Hi Everyone,

Sorry it has been awhile since we've written. Typically there is a lull in the action during our daily visits to HUP but with this admission, that has not been the case. I went in on Sunday afternoon and ended up staying until Tuesday afternoon. I would tag team with my brother Joe and Dad as Mike has been sick since Sunday.

Mom has had terrible fevers this visit, sometimes above 104 degrees. With the onset of the fevers, her blood pressure drops dangerously low (sometimes 80s over 40s) and her heart rate soars to 140 beats per minute, sometimes even higher. As soon as the rigors start we'd take her temp and it would be 98 degrees. Within 10 minutes the temp would be up to 102 and climbing. One of our day nurses had the idea on Tuesday morning to start Ativan as soon as the fever symptoms began. This seems to control the rigors, which have been incredibly intense for mom. Controlling the rigors seems to keep the fever's side affects from getting out of control. The ativan cannot control the fever itself, however, doses of tylenol seem to work temporarily.

Mom's left shoulder began to bother her prior to her admission but with the cellulitis in the right arm, we all kind of forgot about the shoulder until earlier this week. We showed the doctors, nurses, students, and anyone else who would examine her throughout the day. Everyone kind of concluded that Mom's shoulder was bugging her from the rigors and being in bed. Each morning the shoulder pain seemed to worsen to the point yesterday that she could no longer use that arm. Remember the right arm already has very limited mobility. The oncologist team suggested yesterday that it was possible the PIC line had become clotted off, causing the swelling and pain and possibly an infection. Joey was there with her when they decided to take her down for some vascular imaging. The imaging team noticed right away that there were numerous clots surrounding the line and this could impede the absorption of the medications administered through the PIC. Mom swears that it did not impact the rate of fluids on board - she has now gained 25 pounds since last Wednesday when she was admitted. There is no chance they will back off on the fluids because that is what keeps her blood pressure in a normal range. When they tried to discontinue them over the weekend, mom became light headed and dizzy.

The docs removed the PIC line last night. Mom spiked a fever of 104 around midnight. I still have my fingers crossed that the PIC line caused a great deal of these fevers and they will resolve in a few more days. No definitive answers here on that, however, the blood cultures continue to come back negative, meaning mom is not becoming septic, her immune system is getting stronger each day. Her WBC is up to 3.2 and her ANC is above 1000. Her blood samples also continue to come back negative for any leukemic blasts. No one wants to do a bone marrow or discuss further treatment options until mom can overcome this current storm.

One thing we did learn for certain this week is the results of mom's skin biopsy. As you may recall, we've been referring to those bumps on her legs as 'leukemia bumps.' It turns out that they are benign, and are also not a source of infection for her. The bumps are a sign of Sweets Syndrome . The doctors have definitively concluded that this is what the bumps are. As long as they remain benign, they are entirely harmless. They typically occur in tandem with a form of cancer, most commonly AML - but Sweet's Syndrome itself is pretty rare.

So for now mom has two tiny IVs in her finger and wrist. Neither arm is a candidate for an IV at this point since both are so swollen from the elbow up. There has not been discussion of using another Hickman catheter because mom believes there were some clots involved with that as well. The docs will continue to get creative with IV placement and have switched everything that they can over to oral medication (PO) when possible. Mom has been needing blood nearly every day and platelets every other day. The doctors say this is from the high fevers and that this causes the body to burn through these cells more quickly. This happens particularly fast when the cells in the body are a donor's. They do believe as the fevers resolve mom's need for blood products will too.

Please don't panic when you aren't able to reach mom. With the Dilaudid and Ativan combination, a lot of her time is spent sleeping or in a delirious state. There has been constant interruptions from the different teams monitoring her, as I can attest to, and this continues all night long. The sleep deprivation carries over and has a cumulative affect on her. I've witnessed her fall asleep while talking on the phone. In between fevers, there are glimpses of mom as we all know her, arguing with me about sleeping over, insisting on taking her own showers, offering Joe and I anything in her fridge ("Have some cranberry juice...I saved you a turkey sandwich from lunch, etc.") She is by no means giving up her fight, and continues to be blessed to have the most wonderful and caring people in her life. We are thankful for you and ask you continue to pray that the fevers will resolve so mom can return to Tennis Way very soon.

Love,

Jess