Since a donor match was found, many have asked when the transplant will take place. At this point we do not have a specific date. Dr. Margolis has advised us that we will begin the transplant process when one of two things happen:
(1.) Jamie's platelets fall to around 10, or
(2.) Jamie begins showing symptoms (spontaneous bleeding, feeling sick, petechiae etc..) which would require a platelet transfusion.
As you can see from his lab yesterday, his platelets are still extremely low. However, they have been in this same range for the last several months. It is our hope that he can at least maintain in this range for the next 6-8 weeks in order to get through the flu season. Bottom line is that Jamie's platelet count and/or how he is feeling will dictate when the transplant occurs. Once we get to that point, the donor match will have to go through several consultations and pass a physical to ensure they are still able to donate.
We have no identifying information regarding the donor match, but one year after the transplant the donor will be able to decide whether or not they wish to disclose who they are. For now, we continue to watch Jamie closely and get his labs every three to four weeks. It is a stressful waiting game, but having found a donor has been quite a relief.
As always, thanks for all the thoughts and prayers.
DONOR MATCH FOUND!!!!!
Well we have some GOOD NEWS. Dr. Margolis called and told us that there is a MATCH in the registry for Jamie. We are very relieved and thankful to hear this. Jamie has been having nosebleeds daily but is still feeling great. We will keep monitoring his counts and watch him for bruising. His platelets are getting lower so it is important that he not fall or wrestle around a lot. We will get his labs checked around the 20th again. He is back in school after 2 snow days last week.
We finally received information on Jesse and Drew this past Friday too. Jesse and Drew's genetic testing has finally come back and they are all NORMAL! That is good news but we still do not know why some of their cells are abnormal. Dr. Margolis would like us to speak with The National Institute of Health which is in Bethesda, Maryland. Dr M. talked to the NIH doctor and they still feel if Jamie needs the transplant that we should still use the Unrelated donor and not Jesse or Drew. We will be in contact with them this week.
I would also like to thank The Seton 8th Graders for all their hard work on the bone marrow drive. We will not know where the donor (match) is from or if it is from the Dubuque drive. There are no names given out and you can only meet them after 1 year if they become the donor.
We will update soon when we talk to NIH on what we will have to do there.
The "My Three Sons Bone Marrow Drive" organized by the Seton 8th graders was a resounding success! The event was covered by numerous media outlets and received wonderful coverage on both tv and newspaper, which has already done wonders to raise awareness to the Registry.
Representative from the Bone Marrow Registry indicated that an average drive will draw 150-200 people. The largest drive they ever had drew over 700 people and was held at the University of Iowa. Representatives are estimating that the My Three Sons drive brought in over 900 people!!
The record breaking turn out is a well deserved tribute to the hard work and dedication of the Seton 8th graders to this event.
DECEMBER 12, 2009
IT'S NOT AN UPDATE UNLESS YOU GET ANOTHER PUBLIC SERVICE ANNOUNCEMENT FROM UNCLE BRAD:
Thanks to all who braved the elements to donate and all those who helped organize the event! Because it costs money to put all the samples into the registry, it may take some time to process the samples. When you are thinking about making any year end charitable donations, I hope you will put Be The Match
on your list. Thank you and GOD BLESS! -- Brad
Song Artist: Bethany Dillon
Song: You Could Be The One
Video Composer: Courtney Weydert
For those who may have missed the Telegraph Herald article:
BEFORE WE GET TO THE LATEST UDATE: HERE IS A PUBLIC SERVICE ANNOUNCEMENT FROM UNCLE BRAD:
Hello all! We've had a lot of questions on this site regarding getting tested to be a match. Many people believe that donating blood or plasma is the same as a test. It is not. The only way to be a match is by registering. Thanks for all of the questions and help! All it takes is a simple cheek swab. You can register Friday 12/11 at HyVee or at:
www.bethematch.org
Happy Thanksgiving!
--Brad
Bone Marrow Donor Drive
Please copy and paste this link in your browser for details!
http://threesonsbonemarrowdrive.webs.com/
The bone marrow drive will be held Friday, December 11, 2009 at the Asbury location of Hy-Vee in the conference room/community center from 3:00 pm to 8:00 pm
AND NOW THE UPDATE!!! :-)
11/25/09 Thanksgiving Update
Jamie had another lab today and the results were pretty consistent with prior results: two cells fairly stable and one still slowly dropping. The results were as follows:
WBC: 5.3
Hemo: 10.5
Platelets 23
Jamie continues to feel and act fine, but he is starting to have the dreaded bloody noses, so we need to watch him a little more carefully. No new plan of action yet. Just continue to get labs every couple of weeks and continue to search the bone marrow registry for a match.
We also received the first round of test results on Jesse and Drew. The tests are done in "tiers" and the first tier did not show any abnormalities, which was good news. The second tier results should be received in another week or two. Until then, we continue to appreciate the healthy days and look forward to a great Thanksgiving with family.
10/22/09 Update: Results Not as Hoped
Since our last post, there have been some unexpected and unfortunate developments. A brief recap may be necessary to fully understand what has been happening. Jamie's platelets have been slowly dropping over the last several months. His other counts have remained fairly steady and safe. Even after consulting many other experts throughout the country, Dr. Margolis could not determine why Jamie's platelets were continuing to drop. The consensus of all the experts was that if his platelets continued to drop, another bone marrow transplant would be necessary.
In preparation for another transplant, Dr. Margolis wanted to conduct additional testing on Jesse and Drew. Because both were previously determined to be a donor match for Jamie, Dr. M wanted to determine which of the two most closely matched Jamie (we have always felt it a blessing to have two possible donor sources for Jamie). In order to accomplish this, samples were sent to a lab in Canada that could more closely analyze their DNA. Those test results initially came back with some strange results and Dr. M felt the samples could have become compromised during the testing procedures and wanted to do them over, which we did.
The second round of results have now come back and they confirmed the first results were in fact correct. The results indicate that both Jesse and Drew (Drew more so than Jesse) have some genetic abnormalities in their DNA which indicate a potential for their own bone marrow issues. So, instead of getting test results to determine who is the closest match to Jamie, we received results which now prevent either Drew or Jesse from being a donor for Jamie. Dr. M is now looking to the national bone marrow donor registry in an effort to locate a suitable match for Jamie.
At this point, we still have many more questions than answers. Teri took all three boys to Milwaukee today (10/22). Jamie provided additional samples in order to assist in the search to find a suitable match on the national registry. He also had a routine lab done which indicated Platelets at 28; WBC at 4.0; Hemo at 11.9.
Jesse and Drew provided samples for further testing in an attempt to more specifically diagnose their own conditions. We were told it could be three weeks before any results are received. Needless to say, it has been a tough week for the parents and family of the Straka boys! However, never wanting to end an update on a negative note, it is important to keep in mind that, at this point, all three boys are feeling fine and doing great. The trip to Milwaukee today for tests was the first day of school the boys have missed. Jamie just finished his basketball season and improved dramatically. Jesse has started Cub Scouts and is meeting new friends, and Drew continues find new ways to torment us and then make us all laugh on a daily basis. We cannot fixate on what the future may or may not bring, just take every healthy day for what it is.
We will update as soon as any new information is received.
NOTE FROM UNCLE BRAD: Thank you for all your thoughts, prayers, and wishes sent on this website. If you want to do more, register at:
http://www.bethematch.org/
It’s a simple cheek swab with a Q-Tip. And it can help save lives. Thank you for your support and please spread the word.
Get on the List!
Did you get an email telling you of an update? If you didn't - you're not on the list! If you want to be on the update list email Brad@Straka.com (or use email link at left). We'll get you on the "J" list (all the cool people are doing it). --Brad
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