More Good News!!

We had our appointment this morning with Dr. Porter and his PA, Heather at 8:30. Before the Doctor arrived, Heather spent some time with us to review the Jefferson lab results and she was obviously excited for us. Heather said that she just cannot believe these results. Debbie is in remission and there is no evidence of leukemia in her bone marrow. Obviously, this does not mean that we are out of the woods, but it does mean that we can pursue a more standard treatment methodology. This will entail at least one round of consolidation chemotherapy.

Dr. Porter then met with us and he confirmed the lab results. He also indicated that Debbie's cytogenetics are also now normal! This means that the del (6q) issue that we were most concerned about has either vanished or resolved itself. This was the genetic defect that made Debbie's leukemia resistant to treatment. We asked Dr. Porter how this could have happened and he really did not have an answer. Of course, Debbie was explaining to him about all of the FOD prayers, the gloves, the masses, novenas, etc. and that she was now claiming this as her miracle! Whatever the answer, we like it and will take it. This result is not something that any of the scientists predicted, so you be the judge. Thank God for Dr. Carabasi's prudent judgment to check Debbie's marrow one more time. As you know, we got the initial good results as Debbie was getting cleared for an admission by the Jefferson business office.

Debbie is not out of the woods. She will be admitted to HUP on Monday for a six day round of consolidation chemotherapy. This will be a high dose treatment delivered two times a day every other day for six days. Assuming that everything goes well, Debbie will be discharged on Saturday afternoon and she will do her recovery at home. This is little scary to us because Debbie's counts will go down while she is at home rather than in the protective environs of the hospital. If she spikes a fever or has a complication, we will have to go back down to HUP immediately.

We will have further details as next week progresses. This is the greatest news we could have hoped for. We are grateful to all of your prayers and help throughout this ordeal. We believe that now we are really on Debbies journey 2 recovery!

Deb sends her love to all.

The Best News !!

We waited all day today to hear from Jeff when the business office called late in the day to make the arrangements for Deb's admission in the morning. Deb told the office that we were waiting to hear the news of the marrow taken yesterday. The office then made some phone calls and shortly thereafter, Lori called with the good news.

Lori said that based upon their analysis of the material taken yesterday, "there is no evidence of leukemia in your bone marrow." They were quick to note that they are not saying that Debbie is in remission, but this is certainly an unexpected finding that will cause everything to take a "pause." Some how, Deb has gotten herself to a place that Dr. Porter had written off. Apparently, they need to compare the slides from the prior HUP marrows, however, this is the best news that we could have hoped for! If Debbie is in remission, the potential treatment options have expanded dramatically. Other institutions that would not accept Deb as a patient may now be willing to treat her. We will have further news over the next few days, but the good news is that we will not be going anywhere tomorrow and will most likely spend a weekend at the shore to boot!

Obviously, we are very happy with this remission/reprieve and will be exploring our treatment options over the next few days. We are sure that the doctors will need to consult and we want to talk to them as well. Was Deb's response to the chemo somewhat "delayed" and could her 6% reading have been 0% if we had waited another week? Of course, we do not know the answers -- but we will certainly be asking a new set of questions.

Thank God for the Friday meeting, our for our interactions with the Doctor and his reaction to Deb (The Four Seasons experience was not too bad either). Dr. Carabasi took a prudent step that may have saved us from a very hard experience, or even something worse.

Thanks to all of you FOD's for your prayers, healings, cards, notes, calls, etc. I will keep shaking the cosmos for Deb and you all keep sending your positive vibes. This story could have a good ending after all!

Deb sends her love to all.

Jeff Update

Dear FOD's

Your continued support is heartening and we cannot wait for the FOD mania party that we will throw after we have gotten through this ordeal. We did not get admitted into Jeff this week ostensibly because the unit was full as of last Friday. Initially we were told that we would be called toward the end of this week for an admission, but things remain fluid.

As you know, we met with Dr. Carabasi last Friday and we had a good meeting. He was very impressed with how well Debbie looked and more importantly, how her counts were "normal." This does not necessarily mean that Debbie is not generating leukemia cells, but for some reason, and this is something that no one can account for, she is also generating normal white blood cells, hemoglobin and platlates. All of the Doctors have commented on this abnormality, but it is a good abnormality in my book!

On Monday, the Doctor called and said that he had been thinking about Debbie all weekend and wanted her to come down for a bone marrow biopsy today -- just to check where we are. We took this as a good sign. The Doctor said that Debbie looked and acted sooo good that he wanted to check her bone marrow for himself. (Amazing what a couple of cosmos and the Four Seasons will do for a girl, but Chizzie always told us so!!).

So Deb had her 4th bone marrow today -- which she describes as her worst -- and I can attest to her discomfort, but still vote #2 as the worst. It was a good test -- stuff was everywhere, bunches of slides were made, a good core was taken -- etc. Hell of a thing to witness and a worse thing to have to endure.

The results of this marrow should be done tomorrow and then they will tell us what is next. If Deb's leukemia is raging, we will be in for the transplant later this week. But hopefully, if the leukemia is minimal, we will be rethinking her next steps. Best case, if her leukemia is in remission, then we will have had our miracle! Of course, we do not know the answer yet, but something caused this Doctor to pause and take the very prudent step to check Debbie's current status. I think that was a good thing and I am hopeful.

We will post again as soon as we know what is going on.

Deb sends her love to all.

"D"day

It has been some time since the last post, but we remained heartened by the continued support we have received from our FOD's. You are one dedicated bunch of FOD's to keep checking and posting your well wishes for Debbie long after we have given you anything to respond to. We thank you and love you all for your continued support.

I chose this title because we have explored a number of different potential options over the past few weeks, from experimental drug therapies in Texas to the haplo at Jeff. We have been turned down in Seattle and Johns Hopkins because of the extent of Debbie's disease. We know that we are risking everything for our dream of victory over this disease. Like those young men on the beaches 60 years ago, the odds are very long against us, but some do pull through and we hope that we are numbered among the lucky few. Your continued hope and prayers will support us through this ordeal.

We will go to Jeff tomorrow for a Mugascan to test the strength of Debbie's heart and a meeting with our new Dr. Carabasi. The only problem is that the first appointment is @ 7:30 and the next one is @ 3:00. Our next post may contain a description of the new Ben Franklin exhibition at the Constitution Center and the menu at the Belgian Bar on 3rd Street in addition to the new hospital information that we need to post for everyone (ha ha). We have reservations at the Four Seasons for Friday night and hope to make the best of this weekend.

Deb will be checking into Jeff on Monday morning to begin the chemotherapy in preparation for the haplo transplant. Pammie will be the donor and we will need everyones help and prayers over the next few weeks. The transplant will take place in about a month. It will take this period of time to hopefully eradicate the disease in Debbie and to harvest the cells from Pam. Deb is strong and in a good mind to handle her upcoming fight. By all conservative estimates, she will be in Jeff for up to 90 days. This will be an extreme ordeal for Deb and your continued support and prayers will help us through it.

We truly appreciate everyones' continued support cards, notes, prayers and help. Debbie is really overwhelmed by your continued kindness.

Deb sends her love to all.

Pictures from Christian's Visit

Dear FODs,

Walid, Christian and I made it back to Virginia last evening safe and sound. The ride home was uneventful except for a bunch of potty breaks. I grabbed Walid a coffee during one of the breaks and the woman at the counter asked how far along I was. I told her eight and a half months and she exclaimed, "You are really BIG!" Now, there is evidence for you all to see - posted in cyberspace. There are also some really special moments captured with mom and dad and proof that mom looks as good as she sounds.

http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=vs5ik4a.3c58soe2&Uy=g6zz3k&Ux=0

We love you all and thank you for your unwavering support for our family.

Special Guest Posting #8

Hello dear friends,

Sorry I haven't blogged to fill you in on Thursday's visit to Jefferson Hospital. Joe and I met with a wonderful doctor, Matthew Carabasi. He was very kind and warm but of course had more bad news. Once again my genetics are to blame. Apparently I have a "suppressor" gene that will make the donor cells from my sister Pam partially ineffective. This ups the ante for an already extremely high risk procedure. The doctor said in a normal haploidentical stem cell transplant (SCT), survival rate is only 1 in 4. In my case, with such poor genetic factors, he was unable to predict how my case would go - other than to say it is extremely risky, but my only chance for survival. We left the office on Thursday with a scheduled admission directly to ICU for this Tuesday to begin the chemotherapy/irradiation process to prepare for the SCT. After further discussion and research, we decided to put off treatment for a week to see if there are other options available. As the doctors continue to remind us, time is of the essence and we can't delay much longer. Not to worry you all, but some of the symptoms I had prior to treatment in December are starting to return. I see Dr. Porter again on Tuesday. We have sent my chart to doctors at Johns Hopkins, Anderson, and Dana Farber and are hopeful they may provide us with alternatives.

In the mean time I have had a glorious weekend with Jessie, Walid, and Christian. This precious grandbaby lightens my soul and spirit. He's getting to be such a big boy. Speaking of big, Jessie looks wonderful but is HUGE! Another big baby on the way, just six more weeks to go. She looks much healthier this pregnancy but has that end of pregnancy waddle thing going.

Thank you everyone for the wonderful food. Bev, your paella is to die for. Mr. Smith, that chili of yours really is spectacular! Cathy Moore tells me she tries to make it for the shop and it's never quite the same. We enjoyed it immensly during the Super Bowl.

I don't know how to thank all of you for all of your continued support. Cards continue to arrive every day with the most heartfelt words of love and concern. I know I am loved and feel so blessed to have all of you. Words just don't seem adequate. Again, I'm sorry I haven't written until now, but for the first time I am really frightened and don't know how to move forward. I too now am hoping for a miracle. I will write again once we make a decision but I'm assuming more chemotherapy is around the corner. I hate the thought of returning to the hospital but know it's just a matter of time. Every minute with my family is a blessing and every conversation with friends is cherished. Thank you again a million times over.

Love,

Debbie