Happy Halloween!!

Dear Fods,

We hope that this post finds you all well and ready for the busy night ahead of us! Hopefully, we will do better than our tally of trick r' treaters' for last year (2). We have enough for 200!

Since our last post, Debbie continued to do poorly on Sunday and into Monday with high fevers, 104.5, stomach aches and the rigors. The jacuzzi was running hot and often to provide her with some relief. On Monday, Debbie went to see Dr. Kuhar and between her and Heather at HUP they were able to come up with combination of high doese steriods and vicodin that has made Debbie feel much better -- even though only a short term fix. She did not have a fever since she took the first dose of steroids on Monday and her appetite is returning. Today she had gained 5 pounds since her last visit.

We had our appointment with Dr. Porter today. It was very busy and it was a very long day. We arrived at 9:30 for a 10:00 appointment and we saw the doctor at about 11:30. Heather is back in the office and looks great and we are glad to have her back on Debbie's team. She and Bridgett spent a lot of time with Debbie discussing her symptoms and checking her hot spots and Debbie was glad to be able to speak with them.

Debbie's counts were OK today although she needed platelets which were low, i.e., 10 and this was after the transfusion over the weekend. It seems that Debbie is now platelet dependent. Dr. Porter said that they can work with that, but thank God for all of the donors. It takes 4 donors for one of Debbie's packets. Her WBC is 3.7 and she had a hemoglobin of 9. The WBC could be deceiving because of the high dose steroids which tend to inflate the WBC.

As to future courses of treatment, Dr. Porter -- somewhat apolgetically -- felt compelled to again mention another transplant. Not at HUP or at Johns Hopkins, but at Jeff. Neither HUP or Johns Hopkins would accept Debbie because of the failed transplant. Debbie said "No" to that. He next suggested conventional in-patient chemotherapy and Debbie again nixed it -- after her last experience at HUP. She said that she was tramatized by the last admission and does not want to come back to HUP.

As to the next phase, Dr. Porter said that they could experiment with various doses of IV chemotherapy that would hold the leukemia at bay for a time but not make Debbie so sick that she has no quality of life. They will let Debbie finish her current steroid regime -- a couple of weeks -- and she what happens. If the fevers, stomach cramps and rigors come back -- they will start a maintenance round of chemotherapy to make it easier on Debbie, plus they always have the steroids.

Unfortunately, the steroids are not a long term fix as they cause their own muscle wasting and imunosupression of the patient further allowing for infections. When we got home today, Heather had called in a pre-emptive prescription to avoid infections while Debbie is on her current steroid regime.

At one point in the conversation, Debbie asked Dr. Porter, "How long do I have if I do nothing? His anwer was 6 weeks!

While I am virtually certain that Debbie will do better than 6 weeks, we are now entering iinto a different phase of the treatment regime which will focus on extending Debbie's life -- but with as much quality as possible.

Thanks to all for your cards, blogs and calls.

Debbie sends her love to all.

October 27, 2007 Update

Dear Fods,

As noted in Jess' last post, Debbie had a good weekend and came off of the antibiotics and steroids on Sunday. Not too surprisingly, Debbie spiked her first temperature on Monday and has basically had a pretty rough week since those meds ended. She had high temperatures every night and last night she peaked at 104.5. She has a new rash developing on her back and arm -- and we all know that this is not a good sign.

We went to Grand View this morning to have bloods drawn and, as usual, the tests are inconclusive. While Debbie has a WBC of 2.8, her Platelets are low @ 13, her Bands are High @ 14, her Sodium, Potassium and Calcium are all low. Something is "cooking" in Debbie and it is going to take some time to find out what it is. We were hoping to get admitted to Grand View for some IV antibiotics, but that did not work out today.

The people at Grand View, as usual, were fantastic. We went to the Emergency room and were taken back in 5 minutes. Labs were drawn and results were delivered within the hour.

Debbie was on the cusp of being admitted to Grand View and there was a bit of a disagreement between HUP and Grand View as to what to do?? This time Grand View had the more conservative view and was willing to admit Debbie to start some IV antibiotics while HUP thought that was unnecessary. Of course the HUP doctor calling the shots was the Oncologist on call -- never met Debbie or has any familarity with Debbie's file -- not to mention the fact that she sounded like she was age 12! In the end, it was decided that Debbie would not be admitted but that she would return to Grand View for platelets later in the evening. Mike and Debbie are there now.

One big difference between Grand View and HUP is that the platelets had to be delivered from Philadelphia to Grand View rather than having a full vault of platelets at Penn. On the other hand, we did have a chance for a nice late lunch / early dinner at an Italian restaurant on the way home, Deb took a nap and when Grand View called, Mike took her back for the platelets. While still an 8-10 hour day, it is much more pleasant at Grand View than at HUP.

We will be meeting with Dr. Porter on Wednesday and the intention is to discuss the next phase of treatment/comfort for Debbie. Her current symptomatology is close to what she had 2 years ago with her high fevers, stomach discomfort and rigors. The first two are back and probably the 3rd is just around the corner. The bath tub is running many times a night and she is not getting much sleep. We need to decide if we stay with HUP or move the next phase of the treatments to Grand View.

Thanks for all of your blogs, cards and calls. They mean the world to Debbie and help her continue on.

Debbie sends her love to all.

Light the Night 2007

Hello all,

The kids and I just returned from an extra long weekend with at Mom Mom and Pop Pop's house. We spent a lot of quality time together. A very big thanks to Meg Noon for organizing Team MazzTek for the Light the Night walk. We had a wonderful time and mom enjoyed seeing everyone who came out to support the cause.



Mom mom was feeling pretty well this weekend so the kids and I decided to stick around a few extra days. We visited the scarecrows at Peddler's Village, carved pumpkins from Freddy Hill, and enjoyed playing with Pop Pop's remote control boat in the creek. The kids and I also visited that fantastic park at Nor Gwyn Pool with our Uncle Joey. Good thing there were two adults for two kids and only one way out of that park!



Uncle Mikey took mom to HUP today for some platelets but everything else seems to be holding steady, despite d/c the steroids and antibiotics on Sunday. Mom and Dad plan to visit the beach house this weekend so keep them in your prayers so that things may continue to be uneventful for the next couple of days.

Hope all is well with each of you!

Love,

Jessie

Mom Mom and Isabelle

Dear Fods,

We made the trip to Long Island today to visit with Allie, Joey and Isabelle. We can't believe that Allie did that trip a couple of times a month. New York driving is definitely an aquired taste!

While we were there all three of Allie's brothers stopped by to visit and we met the whole family except Andrew's wife who was on business in Atlanta. They are a very close family and they have been very supportive of Joey. We went back to Liz's house after our hospital visit and had a nice glass of Italian wine. They live about 1 mile from the hospital and Andrew lives 1 mile from home while Billy lives a mile in the other direction. They are a great family and we are very happy to become part of it.

There are great diners at every block and we went to one a block away for a snack before the ride home. Joey left from the diner to go back to the hospital and we travelled back to Pennsylvania. He is with Allie and Isabelle now at the hospital and will stay up there until Allie is discharged on Tuesday.

Needless to say, Debbie was thrilled to be able to see the new baby and to be surrounded by family. She is completely exhausted now, but was her true trooper self for the whole day with no complaints with the long drive.

I was able to get some pictures of today up -- and you can see how happy everyone is with the new baby girl. She is the center of attention, but of course slept for almost all of the visit!

Debbie sends her love to all.

ISABELLE ROSE HAS ARRIVED !!!

Dear Fods,

We had a new arrival to the family today @ 9:00 AM in Long Island. Isabelle Rose weighed in @ 7 lb. 13 oz. and is 20.5 inches long. She and Mom are doing fine.

Allie had a tough time with the delivery. She was originally scheduled for a "C" section on 10/03 but when they arrived, the baby had turned and they decided to let Allie go to full term. Unfortunately, 5 days later Allie was still waiting and they induced her labor yesterday. Although Allie progressed for a while longer, it became apparent that she could not deliver on her own. So earlier today, they did a C section to deliver our new baby girl.

Allie and baby are doing fine. Joey has been up in NY since 10/02 and they are all worn out. We are hoping to go up tomorrow for a quick visit to see them and our new baby girl.

Debbie is holding her own and is excited to visit the new baby tomorrow.

Thanks to all for your continued thoughts, blogs, cards and prayers.

Debbie sends her love to all.

HOME AGAIN !!!

Dear Fods,

Debbie was discharged from HUP yesterday afternoon and after a long ride home, she was warm and comfortable in her own bed for the first time in 16 days. She is very happy to be home and we are glad to have her back again. She said that she finally slept well last night and we will make sure that she comes down and moves around more today than she has been getting away with in the hospital.

Debbie is very weak and thinner than ever. All of the "water weight" is now gone and we will need to start working in the kitchen to come up with some meals that appeal to her. Last night she did have an entire Mac and Cheese which is more than I have seen her eat in two weeks. Today we will try some sauce Bolognese and some nice pasta. While in the hospital Debbie basically survived on cream based soups from the new deli called "Potbellies".

They moved all of Debbie's meds over to PO over the past two days and I took the dozen or so scripts over to CVS last night for be filled. When I came back to pick them up the druggist asked me if I wanted a shopping cart! We will fill up the pill box later today and hopefully all of this stuff will keep Debbie up and about for a while longer.

Thanks to all for your blogs, cards and calls. They help to keep Debbie going.

Debbie sends her love to all.

Special Guest Posting from Rhoades 7011

Dear Fods,

Hello dear friends! I finally have a voice and feel well enough to dictate a message to all of you. It has been a terrible and complicated hospital admission and for the first time at HUP, I started to feel like I was falling through the cracks. The doctors were not in agreement with my treatment and when I became critically ill on Sunday they could not decide if I should be intubated or treated with steroids. Even though I could hardly talk, I was saying, "give me the steroids and not the tube!" Dr. Stud intervened and they moved me to ICU, to watch me closely and give me steroids. He said that because I am so neutropenic, the tupe would only have caused more problems. Dr. Stud was actually at the Phillies game when all of this happened and he called and gave his instructions from the ball park! So by the grace of God and all of your continued prayers, I dodged another bullet.

IV access has been a huge problem and they thought I would need a jugular catheter inserted because the left arm was clotted off and the right arm had the celluitis infection. They hesitated to put the line in my chest in case they punctured a lung. Today, God intervened and and they were able to put a new pic line in my arm. Everyone is a little nervous about the placement of the pic in the right arm, but it is in and working now and we will see how it goes.

My throat is much improved and I am able to eat soft food and to swallow pills again. This is the update for today.

Dear friends, I really cannot tell you how much you mean to me. In my darkest hours I feel your strength and you keep pulling me through. I too pray all the time and God must still be with me because I have made it through a lot of hurdles on this admission. So thank you for all of your love and support.

I love you all.

Debbie

"OUTTA THERE!!!"

Dear Fods,

Debbie was moved out of the MICU around noon this morning and she is much improved. With the steroids she has received since yesterday afternoon, her tongue was almost normal, her right arm is much better and she is able to eat and take her pills by mouth. This is very much better than the situation yesterday and we will simply leave it at that. As Forrest would say, "that is all we have to say about that!"

Joey came down with me this morning and helped with moving Debbie into her new room on Rhoades 7 (7011). This is the floor where Debbie had the transplant and everyone was happy to see Debbie again (and with hair!). They are calling her "curlylocks"! Tara, a good friend, is Debbie's charge nurse and Nicole, another friend from our old neighborhood in Southampton, did the stick for Debbie's IV this afternoon. Housekeeping and Food Service came by to visit and while not "home", Debbie is very comfortable and cared for in her home away from home. Many, many thanks to our special friend who I called yesterday to help with these logistics. This is where Debbie needs to be now.

Interventional Radiology will try to insert a new central line tomorrow. As you know, Debbie's last line failed with a clot and infection about a week ago. The little IV sticks just cannot hold up after two days and she is being stuck constantly to keep more than one access line open in case of an emergency, like yesterday. In the MICU they had to put a line in her foot to have a second line of access. These IV's fail after two days and they need to have a reliable, long term point of access. Hopefully, this procedure will go well tomorrow and will not be too painful for Debbie.

Things are so much better today than yesterday. We have no idea when Debbie will be discharged. She has not had any fevers since the steroids started, but that is what the steroids do. They knock down all of the bad stuff but are not the long term solution. Hopefully, we will have the results of the BMB in a few days and once they are in, we will get a better picture for the future course of treatment. Debbie is still very much in the game and fighting like a trooper.

Debbie read the blogs today and is up to date. Thanks for your posts. They help Debbie know how many friends are supporting her.

Debbie sends her love to all.