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:

Severna Park Racquetball & Fitness Club

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! 

Transfer and Move Update

I finally made it to the DC area.  I really like our new place and Kellan and I seem to be settling in well.  I met with Dr. Brodsky yesterday at Johns Hopkins.  I like him a whole lot better than my doctors at KU.  He seems more intelligent and works with a whole lot of more aplastic anemia patients.  In fact, he doesn't think that I had MDS at all, but I have to send him my labs into him for him to see.  I was going to KU every 1-2 weeks for follow up and Dr. Brodsky wants to see me in 3 months!  You don't know how that made my day!  He told me that I have a very small chance of getting GVHD or having any problems with my transplant.  My outlook is good and he said that I will probably get to live out my life just like someone who never had aplastic anemia!

My Day 180 results were all good too.  My marrow is still 100% my brothers and my labs are all good.  I seem to be gaining some weight back too, even though I don't want to.  Dr. Brodsky says that it is most likely due to my menopausal state.

So overall, I'm pretty happy with the move, transition in care and and my overall health!

I will continue to update my blog, but probably not as often anymore.  I am going to write a case study about the importance of understanding patients' personal lives/circumstances and educating caregivers.  I hope to get it published in one of the medical journals.

Thanks for everyone's continued support and prayers!

Day 180 - 6 months post transplant

Well I've made it to my 2nd goal - 6 months post transplant!  Things couldn't be going any better either!  No signs of GVHD, labs are good, no significant symptoms and my hair is really starting to grow in.  My biggest complaint is that I am still tired a lot.  I can be doing just normal daily stuff and get exhausted in no time.  The past couple of days have been pretty bad, but I know eventually I will bounce back.  I got another bone marrow biopsy done today and it went really good.  I love Julie, the NP that does them at KU.  I wish I could take her with me to DC.

I contacted Johns Hopkins and Dr. Brodsky is willing to accept me as a patient.  I'm very excited about being able to get treated at one of the best facilities in the nation.  I just hope that he is personable and has good bedside manner.  I have spoken to his nurse a couple of times and she seems very "to the point."   I think I am going to like that about her.  So if anyone knows anything about Dr. Brodsky, please let me know!  You can contact me through a private message if you want at andrya79@hotmail.com or andrya.deghelder@gmail.com.

Kellan is really trying hard to crawl.  We have finally got him doing the army crawl really well.  He is moving around on his feet well too.  He can hold on to the table and reach down to grab a toy.  He can move around the table by himself.  He is just growing up so fast!

It looks like my move is being postponed for about a week.  Our household goods can't be delivered until January 31st, so we want to make sure the house is mostly unpacked before I get there.  I don't want to be around all the dust and stuff from unpacking.

Please spread the word about donations and any ideas for fundraising.  I sent in my first reimbursement forms this weekend and our funds don't cover it all.  In this tough economy, I realize it is hard to spare anything, but even $5 covers a month of a prescription.

Thanks for everyone for taking the time to read and follow my blog.  I have heard so many people tell me about how it makes them feel and that only makes me feel that much stronger.  Even though I am doing well, I still have a long way to go for full recovery and your personal responses really make a difference.

Thank you for keeping me and my family in your prayers and thoughts. 

Things are going well!

Sorry for it being such a long time since my last post.  I didn't have computer access.  But, as the doctor's always say, no news is good news.  That is the case for me!  I have had perfect labs for the last couple of weeks.  I got a minor cold that is taking forever to go away and it really knocked me out yesterday.  It is getting better, they put me on a z-pack and upped my anti-viral meds.  Other than that, we had a good new year and looking forward to continued good lab reports!

My move is scheduled for 01FEB12.  We are moving to Odenton, MD which is near Fort Meade.  I have not yet decided on the treatment facility.  I will be speaking with Johns Hopkins tomorrow to find out if they will accept me as a patient.  I have been told that they will only take pre-transplant new patients.  If not, I can go to the University of Maryland.  Either way, I have heard good things about both of them. 

Kellan is growing like a weed.  He was 24 lbs on his 9 month visit.  He still isn't crawling or walking, but it is coming soon.  He pulls himself up and now says mama and dada.  We are trying to teach him to wave bye-bye too, but that isn't going to well.  His favorite thing to do is go swimming in the bathtub on his back and drink the bath water and eat the soap bubbles. 

My 6 month visit is coming up, I have nothing but high hopes for it!

Thanks for everyone's help, prayers and thoughts.  I especially want to thank Trisha Henke for watching Kellan during my doctor's visits.