a·plas·tic a·ne·mi·a/āˈplastik əˈnēmēə/

Noun: Deficiency of all types of blood cells caused by failure of bone marrow development

Wednesday, March 28, 2012

Washington DC

I am happy to report that we are all moved and settled into the Washington DC area.  How exciting this is!  So far, since my last update, I have met 2 people that follow my blog and attended the AAMDS International Organization conference this past weekend.  It is so nice to be in an area where there are other people with my condition.  The conference was very informative, but I have to say that it was mentally and emotionally exhausting at the same time.  Dr. Young from the NIH spoke about a new test to determine if your transplant will be a success.  In short, it is a test to see if you or your donor has short telemeres, which are the ends of your chromosomes.  If your telemeres are short, then your life expectancy is most likely going to be short; therefore, if your donor has short telemeres, there is usually an indication that there is going to be problems down the road.  I asked him if it would be beneficial for me or my son to get tested for short telemeres (meaning, since my brother was not tested prior to my transplant, would we be able to determine the future success of the transplant and to see if possibly we might know if my son would possibly have AA) and Dr. Young indicated that it would not be beneficial at all.  He also indicated that there is a high prevalence of AA in SE Asia, so I questioned him about whether he thought Hawaii could possibly fall into that geographical area.  He stated that the AA in SE Asia and Hawaii usually was due to environmental factors; however, there is no way to be certain because a huge Asian population in Canada that has AA does not seem to indicate there AA was caused by environmental factors.  So in short, the community seems to be firm in their stance that there really is no way to determine what causes AA.  Dr. Young's presentation was mostly focused on new research on non-transplant treatments.  These include an androgen treatment and also a platelet stimulating treatment that has shown to increase red and white blood cell counts as well.  It seems these two avenues of treatment seem promising, especially for those that do not have a donor for a transplant.  I finally mentioned to Dr. Young that I would be returning to work soon and had 12 years of clinical research experience...the group chuckled, Dr. Young didn't seem to think it was very funny at all.  He seems kind of stiff, but very, very knowledgeable about AA.  If you don't remember, this is the doctor that my Hawaii doctors consulted on what to do with me.  He was the one that told my doctors that if I had been 24 weeks pregnant, they would have asked me to have an abortion.  Thank goodness I was 25 weeks and that option was off the table. 

There was also a doctor from Wisconsin who talked about transplants and transplant treatments.  He talked about the use of horse ATG as being superior to rabbit ATG treatments.  This guy was really down to earth, if I were a mom with a kid with AA, this would be the doctor I would want.  I don't really remember a lot from his presentation because I was just so impressed that he was so human.  I was also wearing down by this time. 

I did get some information about support groups in the area, so I am going to attend the Baltimore support group on April 21st.  I just can't express how excited I am to share my story and to also hear others' stories and to help others where I can. 

I lastly went to to the segment on how to beat fatigue.  I still occassionally get pretty fatigued and the more my son grows and becomes more mobile, sometimes it is very hard to keep up with him.  Pretty much, I learned that fatigue is just a fact of chemo treatment and there really isn't any cure or therapy that can help.  The presenter did give suggestions on how to help, such as exercising, etc.  I really wasn't that impressed with the presentation. 

After that I was just exhausted.  I don't know if it was because Kellan didn't sleep much the night before of if I was mentally and emotionally exhausted or a combination of it all.  This conference brought up a lot of emotions that I had put aside.  I am doing so well, that I forget sometimes that I am still recovering from a bone marrow transplant.  I couldn't help but think about the stress, turmoil and fear that I experienced after diagnosis and during treatment.  It was almost like reliving those first 6 months after diagnosis and transplant.   We didn't stay after that, which I was kind of disappointed about, but I just couldn't do it.  I fell asleep almost as soon as we hit the highway, came home and slept for 3 more hours. 

I had lunch last Friday with a mother of a 2 year old with AA.  She has such an amazing story and is such a strong person for her little girl.  I look forward to getting to know her more and to help her out when I can.  I also met another person at the conference that has been following my blog since the beginning.  She is from Hawaii as well and doesn't live too far away.  I look forward to getting together with you Kayni. 

If you are in the DC/Baltimore area, please "Get Swabbed" by attending a Bone Marrow Registry event on Saturday from 9:00 AM to 1:00 PM hosted by my friend.  The location is:

8514 Veterans Hwy, Millersville, MD 21108-2569
If you are not in this area, I highly encourage everyone to join a bone marrow registry to save lives.  Donating bone marrow for someone that needs a transplant is almost as simple as donating blood or plasma.  There are many people out there with cancer and bone marrow failure that need your help!