We had a long day at the hospital. But as Joe says, having two blissful days off made it all worth it. Joe seems to be developing some early signs of GVHD. Some of it is natural and necessary. We just need to keep a close watch on everything to make sure it doesn't get too serious. Joe's symptoms started with a rash that looked like dry skin. He also had itchiness around his eyes. This morning the rash appeared more pronounced, mostly on his upper body, and the area around his eyes was very red. The itchiness became unbearable. At the hospital, we waited an eternity. Then Joe had his blood drawn. Then we waited another eternity. We saw the doctor. Joe was prescribed some steroids for the itchiness. The doctor also requested a skin biopsy to confirm the nature of the rash. Yup, we waited another eternity for the skin biopsy to be done. It went smoothly. Hopefully it heals more quickly than Joe's last skin biopsy. The last time, it was on a pressure spot, so the area took a very long time to heal.
The good news is that Joe's WBC is now at 4300! His Hemoglobin is 11.0. Lookin' good, lookin' good! Since we were already at the hospital and Joe's magnesium was bordering on low, we went up to Short Stay so Joe could get an IV. We were at the hospital for a good 7 hours today. But provided that Joe's rash behaves, we have the weekend off. :)
Besides being frustrated by the itchiness and more drugs, Joe is in good spirits. He is quick to say this is no fun at all. But he is also quick to mention that he knows he has been blessed - from finding a donor within 6 months to doing as well as can be expected pre and post-transplant. Joe is amazing!
Discovered an article on Erica's website, and I thought it was worth sharing.
Too Young for This: Facing Cancer Under 40
New York Times, January 30, 2007
Thank you Pei-chen for the sweet gift. You are always so considerate. Hope we can see you again soon!
Showing posts with label FAQ. Show all posts
Showing posts with label FAQ. Show all posts
Friday, February 02, 2007
Monday, July 03, 2006
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"
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"
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