Giving Vidaza Another Go...

Hey everyone, I know many people are wondering how this admission is going, if the HUP team was able to determine the source of Mom's pain, and when they will begin treatment. I decided to stay in Virginia for now, but when I spoke with Mom last evening on the phone, I took a few notes that she asked I share with you.

During the first few days of the admission they gave Mom whopping doses of Hydrea to help knock down the white count. By whopping, I mean she was taking three or four pills a day for the last few weeks during which the HUP team told her sometimes people took up to eight. The doctors ordered a dosage equivalent to twenty-four pills which she took for two consecutive days. This got the white count down to a more reasonable number (from 77 to 25 in three days) to prepare mom for the chemotherapy. Unfortunately, her white count and platelets continue to drop, and she's now back on neutropenic precautions as her white count is 2 and her ANC is less than 1000.

In a preemptive measure, they tweaked Mom's antibiotics again to include Voraconazole to help combat fungal infection as Mom's sinuses continue to worsen. They also added Tobramycin, which fights against the gram negative infections Mom has suffered with previously. The big concern with Tobramycin is more hearing loss and vertigo. Mom immediately brought this up but at this point the benefit outweighs the risk. Mom was also concerned since Tobramycin is toxic for the kidneys and with her elevated BUN and Creatinine, this of course causes her some worry.

The doctors had ordered CT scans, MRIs, and X-Rays in an effort to determine the source of Mom's debilitating pain. At first they thought Mom may have a chloroma (pocket of leukemia cells) in her hip and discussed a short course of targeted radiation therapy which would shrink the affected site and hopefully reduce the pain. What they found after more testing, however, is that there is leukemia infiltrated throughout her hip and spine. In the spine, the leukemia is causing discs to bulge and compressing nerves, which explains Mom's agonizing pain. Due to the severe pain in Mom's heels, they suspect the inflammation that appeared on the X-Ray is also likely leukemia as well. The doctors decided it was time to begin the chemotherapy due to the widespread presentation of the leukemia. They are hopeful the treatment will reduce the instance of leukemia throughout her bones and Mom will experience a significant reduction in pain.

They begun the chemotherapy Thursday evening. She's back on Vidaza but this time it will be administered via IV. The doctors chose a five day course of treatment as opposed to the previous plan of seven days. If mom tolerates the chemotherapy well, they will opt for a seven day course in about another month. At this point they want to watch mom closely to see how she tolerates the chemo and get her pain under control.

Up until yesterday, Mom was continuing her heroics and trying not to 'overdue' it with the pain medication. Mom always fears she will end up at the Betty Ford clinic. What we've all been trying to tell her these last three and a half years, is that these drugs were invented for times like these. The pain team has been visiting with Mom a few times a day and they told her yesterday she may need to get used to the idea of being on some form of pain medication for the rest of her life.

When I spoke with Mom on the phone in the morning, she was in such severe pain she said she couldn't move. The pain team came in and had a long talk with her and doubled the amount of pain medication she is on. Because of Mom's previous use of the pain medication, she needs A LOT for it to have an effect. For now, they've got her on 40 mg of oxycotin twice daily. She also has the pain pump that administers 100 mcg of Fentanyl with each hit of the button. She bragged to me last night she only hit the button three times yesterday. Her pain levels were much better and she said she was able to do seven laps in the hallway with the walker. This is quite a feat as she likely hasn't moved that much in weeks. She knows that she needs the pain medication to help keep her moving, and she knows she must keep moving to prevent complications such as pneumonia and bed sores.

Mom's had some fevers already, the highest being 101.6. She's still on 40 mg of prednisone which can mask infection by keeping those fevers lower. No one is willing to chance reducing the amount of steroids Mom is taking at this point. The steroids do provide some pain relief and keep Mom's appetite up - I believe yesterday was the first day she refused to eat the hospital food. Since she's neutropenic, many of the foods she enjoys are off-limits for now. The Teklits men seem to have Mom's cravings down to a science, and keep her room well stocked between their visits.

I'm still home with my family in Virginia as Mom has urged me to 'wait' and see what happens. If all goes well she'll be home in a few more days and laying low until her counts return to normal. We will keep you posted as we learn more. Thanks to all for your prayers, posts, cards, and calls. We all appreciate it more than you may know!

Love,

Jessie

Back on Rhodes

This is just a quick post to let you all know that Mom was admitted to HUP today. From what she told me, she tried to debate with Heather and Dr. Porter over the phone about more outpatient treatment. They told her they couldn't treat her outpatient anymore and that her counts indicated rapid leukemia progression and they were suspecting her pain may be aggravated by the bone pain typical with active disease. She still tried to have another day at home and told the HUP team she'd see them tomorrow. They told her she had to come down TODAY and get checked out ASAP. The white count was mid-40s last week and was up to nearly 80 according to Monday's labs. Mom's BUN and Creatinine were continuing to climb as well.

Thanks to Mike and Marian for transporting Mom downtown and navigating through the different buildings. Thanks to Dad for meeting them all there and keeping us informed. There's no clear game plan yet, since Mom's counts need to normalize before they can begin chemotherapy. She has CT Scans, MRIs, and X-Rays lined for last evening and tomorrow. They also set her up with a PCA pump. Mom refused at first and had to be coaxed into having it connected once the pain experts saw how difficult it was for her to move.

They are talking about beginning a course of Vidaza once things stabilize. This is administered via IV infusion over seven days. This will be done as an inpatient so Mom will likely be in through at least next weekend. We will let you know more as things progress. Thanks to everyone for all you do.

Love,

Jessie

Beautiful Sunday

Hello Everybody,
This is Debbie on her own so get ready for the mistakes. How are all of you my dear friends? I hope you all had a nice easter and are enjoying this beautiful weather. Doesn't this make you want to plant your garden? I can't believe how time is flying. Almost graduation for Colin, Bobby T., Bobby L, Stephie and soon Meredith will be home from Spain and almost time for the beach. PLEASE GOD let me get to O.C. Belated Happy Birthday to Boni for the big 50 and ty for the great tee shirt. I wear it all the time and think of you and my precious babies. Thankyou everyone for all the cards that still come every day and all the wonderful cakes and
homemade candy. Who has the time for that? but boy is it good.
Well to the news. I have had a very bad couple of weeks. The Leukemia is very "active" as Dr. Porter would say. So I was at Penn 3 weeks ago for a lumbar puncture (that went just fine and NO leukemia in my brain) and then over to interventional radiology for a torturous 4 hrs. on the table trying to get a line in. No luck in my arm after 5 sticks so I have a Hickman cath back in my chest which is workinkg well. The real problem is that I did something to my back, I think a pinched siatic nerve withreallt terrible back pain and if you can believe it both heels have heel spurs or something that i can bearly stand. I.m not kidding. I have had to have someone with me to help me move and get to the bathroom etc. You can imagine how frustrating this is for me. Joe has been going in to work late to get me out of bed and then my wonderful friends have been taking turns staying with me. They all have jobs and grandkids they watch and its making me nuts ,yet i am SO GRATEFUL for thier help. I can'y have an MRI to see whats going on cause my kidney function is not great(BUN AND CREAT). Right after i had the line placed my vis. nurse and dear friend Cathy came and thought it looked infected, so she took a picture with her phone and sent it to Dr.Porter. Needless to say they called back 15min. later and said to come right down to Penn. They needed to pull the line and start iv antibiotics,.I refused. These poor people, I'm driving them crazy!!! It took 4 hrs. to get in and there is no place else to go so it has to stay is what i said. So we compromised with blood cultures and very srong antibiotics (5 to be exact) iv fluids at home .and it looked better by the next day. But, between being dehydrated and the use of very strong antibiotics the BUN and Creatinine went up so thats why i havent had an MRI. They have started me on Neurontin which is for nerve pain and im taking Vicocin around the clock. But am still having terrible unberable pain, calling Dr.Dave. I am managing and have been surrounded by so much love and have had some great converstions with my freinds (and lots of good food)!!!! I will be talking to Heather tomorrow to see what more we can do and of course chemo is looming because the hydrea is not working so well anymore. On a lighter note jessie walid and the kiddies along with little abbey dog were all up for easter, we had a great time. And allison and liz were here with izzy yesterday, and somehow God miraculously gives me the strength to enjoy these visits. I will close now but will let you all know what will be the next step in this journey. I love you all and a million thank yous for your attention and prayers
love
Debbie