Keep up those prayers!!!!!!! (please)

Saturday...
Joe was started on Vidaza once again (a quarter dose like the last round). This was day two of round 2, post-transplant. On weekends the BMT office is closed, so Joe has to go to short stay. All of the nurses in short stay know us very well. It wasn't a very eventful day. For the last round of Vidaza, Joe had a line and thus he took advantage of the fact that Vidaza has been approved for IV administration. This time, since Joe doesn't have a line anymore, he has gone back to getting subcutaneous injections. With the quarter dose it is just one shot...not so bad, says the wife who isn't getting poked!

Sunday...
Joe had his blood drawn. Being a chemotherapy, Vidaza made Joe's counts even lower. Plans were made for a platelet transfusion to take place on Monday.

Monday...
The plan was to go to the BMT office. There we thought we might wait for 15, maybe 20 minutes for Joe to be called back to receive his Vidaza shot which would take a good 5 seconds. Then we would head up to short stay where we would wait about an hour for Joe's platelets. Platelets are fast, so the transfusion would take at most 15 minutes, and then we would be on our way home. We figured everything would take 2 hours...maybe 3 if things were really crazy. This is what we THOUGHT, because after months and months of going to the hospital and being given the opportunity to take full advantage of the WAITING rooms...we still haven't learned our lesson.

What really happened is that we went to the BMT office and waited for two hours before Joe was called back to receive his Vidaza shot which took all of 5 seconds. Then we headed up to short stay where we only had to wait about 15 minutes before Joe was taken to his room. At this point we were told that his platelets would arrive in an hour. Well, an hour came and went with no sign of platelets. Then a lovely nurse came and told us that they were informed that the platelets would arrive in 20 minutes. Apparently they were to arrive with the 2pm driver from the Central Blood Bank. Joe's platelets were not with the 2pm driver. We had to wait for the 3:10-3:15 driver. The 3:10-3:15 driver did not arrive until about 3:40, at which point the hospital people had to process it and such. Joe finally received his platelets at around 4pm. And yes, the transfusion took about 15 minutes. We waited over 5 hours for two procedures that took a total of 15 minutes and 5 seconds. The positive thing is that I was able to do plenty of reading and crocheting, and Joe was able to do plenty of reading and napping. The Benadryl that Joe was given before his transfusion did a great job of making him drowsy. The other positive thing is that Joe didn't have any reactions to his transfusion.

Today...
Today Joe had another blood draw. Everything was low again, which was expected. We also met with the doctor. Joe is going to be getting Vidaza each month again as a sort of maintenance. This sounds like a good idea right now. The not so great news is that after two negatives, Joe's Sunday blood draw showed that he is CMV is positive once again. That darn CMV loves to pop up and cause trouble all the time! Joe was already due for another dose of Cidofovir on Thursday. That will go as planned. Hopefully that will work to make that pesky CMV negative once again. If not then Joe might have to begin a combined therapy of Ganciclovir and Cidofovir.

The other thing is that Joe's rash started to flare up again. It is not too bad yet, but everyone would like it to stay "not too bad yet." So Joe's steroids were increased yet again. Not too high, but it already seems to be helping.

We are still smiling. In fact, on Monday one of the nurses said, "I think the two of you look happier every time I see you." Today, Joe's doctor said, "The two of you are always so positive." He thinks that all of this positivity has helped Joe to not look or feel as bad as many patients would during the "downs" of all the "ups and downs" Joe has been through. I think that it's true. One of the big things Joe and I have learned during this journey is that there is no point in worrying before you have to worry. And actually, with each "down" we experience, we are learning that there really is no sense in worrying then either. Worrying makes you feel miserable, it causes you to lose sleep, it gives you wrinkles, and in the end none of your problems are solved. Being positive makes you happy, allows for plenty of beauty rest, makes a better impact on others, and allows you to enjoy life despite all odds. :)

Thank you everyone for all of your prayers and all of the positive energy you've directed our way. Knowing we have so much love and support really helps us to continue to stay postiive.

Who of you by worrying can add a single hour to his life?
~Matthew 6:27

FAQ

I had to post this. Our dear friend Vince has been amazing as one of our "point people." He has just gone above and beyond in keeping people up to date and helping us in every way possible. Keep him in his prayers because he's taking boards next week!!!!!

Anyway, he was very helpful in getting some info about the national marrow registry. Obviously, Joe and I are now big advocates of the registry! Here's the info he collected...(Thank you Vince!)

"i received this information from three main sources; more detailed information can be found on these sites:
www.marrow.org - the National Marrow Donor Program website
the Central Blood Bank in Pittsburgh412-209-7131 (they are very helpful in answering any questions you mayhave)
www.bonemarrowtest.com (private lab; see FAQ below)

Here are some Frequently Asked Questions:
- How can i register for the National Marrow Donor Program (NMDP)?
- What specimen is taken for you to be registered into the NationalMarrow Donor Program (NMDP)?
- Can i see if i am a match for Joe, but NOT be enrolled in theNational Marrow Donor Program?
- If i am chosen, how will the stem cells be collected?
- Will we be having a NMDP registration drive at Pittsburgh Chinese Church?

FAQ answers:
- How can i register for the National Marrow Donor Program (NMDP)?
You can register at any local Central Blood Bank branch; there aremany in the Pittsburgh area. call their number (412-209-7131) or lookonline at www.CentralBloodBank.orgThey will pay for the registration fee if you are willing to donatesome blood at the time of your cheek swab. Otherwise, you may be askedto pay a fee for tissue typing costs (probably $50 or less).you can also register ON-LINE; log on to www.marrow.org, and you canhave a kit sent to you for $52. This payment is tax-deductible.

- What specimen is taken for you to be registered into the NationalMarrow Donor Program (NMDP)?
All that is needed is a cotton swab of your cheek cells.- Can i see if i am a match for Joe, but NOT be enrolled in theNational Marrow Donor Program? Yes, you can. This can be done through PRIVATE testing at anindependent laboratory which can determine your HLA results for the 6markers they look at when they determine whether or not you match. The cost for this process is $140 plus $15 shipping. They will mail you a kit, and then send you your results in about ONE MONTH. You can also select the expedited process, which will cost $375, but the results are returned in one week. Once you receive the results, you then need to give these results to Joe's doctor to see whether or not you match.
If you change your mind and want to be enrolled in the national program, you can do so by giving the results to the Central Blood Bank. The specific private testing lab that is recommended by the Centra lBlood Bank is the Tepnel Laboratory. All the info you need can befound on:www.bonemarrowtest.com

- If i am chosen, how will the stem cells be collected?
There are 2 ways:"Peripheral Blood Stem Cell donation takes place at an apheresiscenter. To increase the number of blood-forming cells in thebloodstream, donors receive daily injections of a drug called filgrastim for five days before the collection. The donor's blood isthen removed through a sterile needle in one arm, passed through amachine that separates out the cells used in transplantation, and theremaining blood is returned through the other arm.

Bone marrow harvesting is an outpatient surgical procedure performed in a hospital. While the donor receives anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the donor's pelvic bones.Many donors receive a transfusion of their own previously donated blood. A donor's marrow is completely replaced within four to six weeks. "The patient's doctor will recommend one or the other to you, but it isyou who will ultimately decide which way to give them stem cells.

- Will we be having a NMDP registration drive at Pittsburgh Chinese Church?

i spoke with several potential sponsoring groups, but as of yet, i haven't been able to successfully coordinate a drive due to certainlogistics. i am still waiting to hear back from one and will let you now if things change. in the meantime, due to the length of time ittakes to get registered, i strongly encourage you to go on your own andget it done. Thanks again for your interest. i will keep you updated, and if youwould like to go with someone to the Central Blood Bank, let me know,and we can go as a small group. if this is the first e-mail you've received from me, let me know if you would also like to be added to the prayer e-mail list to receive updates on how Joe is doing. if you have any other specific questions, don't hesitate to contact me.

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." -- Matthew 7:7-8"