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. 

1 Year Anniversary

1 year ago today, I was diagnosed with aplastic anemia.  I was 5 months pregnant and had no idea there was anything wrong.  It was only because of a minor traffic accident that we found out.  I can't believe it has been a year and and I can't believe how well I am doing!  I'm so thankful that I have a beautiful, wonderful son and a very supportive and loving husband.  Without them, I don't know where I would be in my recovery.  Tomorrow I go in for more labs and a doctor visit.  I'm also getting an MRI of my hip, which keeps hurting off and on for no reason. 

Day 148 - Perfect!

All of my labs came back perfect today!  I'm so happy for this!  I still have some significant fatigue and occassionally some nausea, but other than that I am doing great!  I couldn't have asked for anything better!  So I hope this gives hope to other bone marrow transplant patients.

Otherwise, life is getting better and better.  I'm still with my parents, but I leave on February 1st to relocate to Washington DC.  My husband leaves Hawaii tomorrow and will be in town for about a week.  He'll then drive to DC around January 2nd and start house hunting and waiting for our household goods to arrive.  They are expected to arrive around the end of January, so we are waiting for them to arrive before I go.  We don't know a lot about the area, so if anyone has suggestions on where the good areas are to live, we would appreciate it!

Kellan said Dada today!  He's also dancing and pulling himself up.  He still isn't crawling, probably because he can't get his pudgy belly off the ground!  He really enjoys spending time with Jack and Sam, my friend's kids.  I'm so glad he can socialize now.

Thanks everyone for your continued thoughts and prayers.  This has truly been a rough and bumpy journey!  But things are starting to get better and better each day.

Happy holidays to everyone!

Day 134 - Great News!

Today started out with such an exciting start!  On our way to the doctor, we stopped for gas and I had a dollar in my pocket, so I bought a $1 scratch off ticket.  I thought, what they heck, its only a dollar.  I got to the car, scratched it off and won $500! 

My appointment went great too!  My counts are good, even though I have a slight cold/runny nose.  I am now to every 2 week appointments!  They stopped my ursadiol as well!  That's the medication that is suppose to protect my liver from GVHD.  So that was all wonderful news!  I do have to go back next week, just for labs and to get my antibiotic treatment, but no doctor visit!

Kellan had an excellent day at my friend Trisha's house.  He had a blast with Sam (5) and Jack (3).  He is going to sleep good tonight.  I really need to get him into some play groups, he is such a social butterfly (or whatever you call the male equivalent). 

I'm still enjoying staying with my parents.  I am thinking about going to Hawaii for a couple of days, but have to work out the logistics.  As much as I would love to take Kellan, I just think that it would be too much for me to handle and too much for him as well.  So its either just me or not at all.  Its a tough decision, but I really miss my friends from Hawaii and would really like to help my husband out with the pack out (when the movers come to pack our stuff).

Thanks, as always, for keeping me and my family in your prayers and thoughts!

Day 126

It has been awhile since I posted.  I was pretty busy the last couple of weeks.  My husband was able to come and see me for Thanksgiving, so that was really nice.  Kellan and I both miss him terribly already!

My counts have been good.  My hemoglobin has climbed back up to 11.6 on Monday.  Normal is 12.0, so we are close.  I was told to expect fluctuations for awhile.  My liver tests were a tad high too, but nothing to be concerned about.  They are probably going to fluctuate as well.  The nurse practitioner indicated that I might have a tiny bit of GVHD in my liver.

I've now moved into my parents house, about 2.5 hours away from the hospital.  I am still going weekly for check ups, but I feel a whole lot better now that I'm with my family.  My in-laws did so much for me and I am very grateful for everything they have done. 

The worst news I received this week was that I am in menopause now, so no more kids.  Its kind of devastating, but I knew that there was an extremely high chance of this happening.  I am happy that I got to have 1 child and he is the most amazing little boy!

Thanks for everyone's continued prayers and thoughts.  I will be eternally grateful to my husband, parents, brother, in-laws and friends for all their support.

Day 100 Results!

My Day 100 results are back and everything is great!  My marrow is now 100% my brothers and there doesn't seem to be any complications.  My risk of GVHD is now decreased.  My counts were about the same as last week, which means they have stabilized.  The doctors are going to monitor me weekly to see if they stay steady, if not, and if they decline, they are going to do more tests.  My liver function tests are much better too!  They took me off of my antibiotic last week and that seems to have really helped with the liver function tests.  My kidney tests are good too.  My iron is still really high (from all the red blood cell transfusions prior to the transplant).  I am going to have to wait 3-6 more months before we can do anything about that.  The only way to get rid of the extra iron is to do phlebotomies (remove blood). 

Though this is all great news, but I felt the best about telling the doctor how I felt.  I asked Dr. McGuirk (the main doctor that I have been seeing) last week to do me a favor and to please not have Dr. Ganguly review my Day 100 results with me today.  First thing this morning, who walks in to my room, but Dr. Ganguly.  Man how I was angry!  I dislike this doctor because he talks "at you" instead of to you, he replies to questions with "because I am the doctor", his bedside manner is awful, he treats you like you are part of an assembly line, etc.  I could go on forever about how I dislike him, including how he wrote in his dictation on my very first visit that he did a complete physical exam, when he didn't.  So today I asked him to stop talking down to me an that I wasn't stupid.  He denied that he was doing it, so when he continued to do it, I pointed it out to him.  Of course he didn't like it, but he needed to know.  My mother-in-law said I was lucky he didn't fire me.  I responded to this statement with, "He's lucky I haven't fired him!"  So after my mother-in-law told me this, I thought it would be good to talk to my therapist about it.  She was proud of me on every level.  She congratulated me for being my own self advocate.

To everyone out there that may not know me or may know me very well, my thinking about doctors is very different than most.  To me, doctors are no better than you or me.  They are not smarter than you or me.  They may be smarter than you or me when it comes to medicine, but everyone has their strengths, who's to say a doctor is smarter than an architect.  When I was a Clinical Research Associate, my job was to go to doctors offices and tell them what they were doing wrong.  I usually never had a problem with that.  Now the tables have turned and when it comes to my own doctors, I have trouble telling them how I feel about them, and trust me, I do NOT ever have a problem telling people what I think of them.  It is very important when you have a serious illness like this, for your doctor to know you, to know you personally, as well as medically.  My doctors at KU have NEVER taken the time to get to know me.  They don't understand my situation, they don't know what I am dealing with emotionally, mentally or physically.  Of course, there are always common denominators with all patients, but each person is an individual, with individual stories.  How can my doctors, who are all male, understand what it is like to be a new mother and living away from her husband and having limited help at home with the baby and dealing with post-partum depression.  Maybe if they would've taken the time to ask, they would have a better understanding of why I have an emotional outburst when I don't feel like anyone is listening to me.  So please, be your own self advocate.  It is ok to question your doctor and he/she should not make you feel bad about this.  You have the right to have your questions answered.  You have the right to understand why they are doing what they are doing.  I had a question while I was in the hospital about why they were giving me Methotrexate (a chemo drug) and what side effects I could expect.  Dr. McGuirk's answer was, "Its in the informed consent, we already went through this with you when you signed the consent (2 weeks prior).  If you have questions, you should read your consent form. You can expect things to get worse before they get better."  I was just absolutely LIVID about this!  I know that it is the doctors responsibility to answer these questions.  I was half out of it, if not completely sometimes, and it was MY responsibility to look something up, when he is suppose to know this stuff inside and out?!  And then he was surprised when I told him to get the hell out of my room.  What does he expect?!  And by the way, things didn't get worse before they got better.  So I may not be an expert on being a self advocate, but I try at every appointment to make sure that I understand completely and fully the reason why they are doing what they are doing.

Alright, enough about that.  I got cleared to go to my parents house, so I am going this weekend.  I also got permission to go back to Hawaii to visit my husband, though, I probably won't go because he is coming here next week for Thanksgiving!  I also got the ok to eat Chipotle, my favorite burrito place!  So that's what I had for lunch.  Overall, this day was awesome!  I feel like I am on top of the world and that I have kicked this aplastic anemia's butt!

Day 111

Today is the day that I get my Day 100 results.  I am still really nervous, but was able to distract myself this week, which kept me from becoming a raging worry wart.  I actually feel pretty good, like my counts are high.  Hopefully the gradual decline in my hemoglobin and red blood cells over the last month was just  a fluke.  Its 12:45 am and I am not a bit at all tired.  I have to get up in 5 hours to go to the doctors office. 

Wish me luck and say a prayer!

Day 104 - Good News? Bad News? I'm Confused!

Today was my first visit after my bone marrow biopsy.  Dr. McGuirk came is and was all smiles with good news.  He said the preliminary results were looking good.  My cellularity is good (that is the amount of cells in my bone marrow), my T-cells are higher than he would expect (white blood cells that help with immunity and stuff), my liver ultrasound looked great (no more fatty, enlarged liver).  I asked him about my counts being low and my bilirubin and LDH (liver tests) being high.  He thinks it is the medication I'm on.  We won't know for sure until the final results come back and the big picture is evaluated.  They are taking me off the Dapsone (antibiotic) and going to an inhalation antibiotic.  My hemoglobin was 9.8 and my RBCs were 2.9.  They haven't been that low since before I left the hospital.  ***Sigh***  I just feel like I can't ever get a straight answer from anyone.  I want to be hopeful that it is just my medication, but I've been on the same dose and same kind of antibiotic since August.  I don't want to set myself up for a huge let down next week.

After I got back from my appointment, I noticed Kellan had a runny nose and watery eyes.  Called his pediatrician to get an appointment right away because the last thing I want to do is get sick myself.  So he has a cold and I have to stay away from him for a day and a half or until his symptoms subside :(  And he does NOT like that snot sucker upper thingy!

I had a long day and I'm already super tired from my low hemoglobin.  I'm sure it is going to be a long night with Kellan as well.  Even though I can't touch him, his crib is in my room and so I'm going to wake up everytime he cries.  I need a nanny!  Just kidding :)

Thank you for all of your thoughts and prayers!

Day 100!

Yeah!  I finally made it!  Though it wasn't as exciting as I thought it would be.  I got an ultrasound on my liver and the tech said that it wasn't fatty or enlarged like last time.  I also got lab work done.  The tests that come back immediately were not so good.  My WBC, RBC, HGB are still low.  The RBC and HGB dropped from last week.  The WBC stayed the same.  In addition, my liver tests were high.  My bilirubin was almost 2x the upper limit of normal, which is really bad.  Also, my lactic dehydrogenase was high.

My interpretation:  The breakdown of red cells will cause your hemoglobin to decrease.  When red blood cells break down, they are filtered through your liver and will cause your bilirubin to rise.  When your bilirubin rises, your urine turns dark.  Thus, this fits the definition of PNH.  So since I have all the symptoms, I'm concerned that my PNH did not go away.  Booo!  And now I have to wait to Nov. 15 to find out, because the last piece to that puzzle is the DNA confirmation, which they got from my biopsy.

My bone marrow biopsy went great!  So much better than the last time!  We just want good results to come back now.

Lastly I had pulmonary function tests done and the tech said that all of these were better than the last.

My next doctor appointment is on Tuesday.  Hopefully they will be able to tell me at least a little something by then so that I don't drive myself crazy waiting for the 15th.

Day 98!

Only 2 more days!  Friday is the day that all of my Day 100 testing will be done.  They will be doing and abdominal ultrasound, labs, bone marrow biopsy and breathing tests.  Please pray that these results will all come back good so my family can be reunited.  There is a downside though, I've been waiting for Day 100 like the honey badger stalks snakes, but unfortunately, I won't be getting my results until the 15th :(  *Deep breath* I can wait 11 more days, I've waited this long, whats another week and a half.

I had an appointment on Tuesday and I met with the NP.  I feel so much more comfortable talking to the NPs than the doctors.  Anyway, I was able to express alot of my concerns about GVHD.  Unfortunately, there is no way to be certain any of my symptoms or labs tests or physical signs are GVHD.  By that, I mean, my liver tests were even higher than last week.  If it is GVHD, most likely they are going to put me on steroids and I do NOT want that at all.  Steroids make you fat.  They also increase your blood glucose and prolonged high blood glucose can lead to diabetes.  My blood glucose is already high...which could be a side effect of the Tacrolimus (anti-rejection/immunosuppressant).  I think most of these unanswered questions will be answered on the 15th though, at least I hope.

My husband is going to try and take convalescent leave between now and his next orders.  I really hope he can, I have been really tired lately and my back and head hurt everyday.  (Again, I was told it was probably a side effect of the Tacrolimus).  I just want my family to be back together again.

For now, good night.  Thanks for continuing to pray for me and my family.  The hardest part of this journey is coming to a close, but there is still a long road ahead.

Day 90

I am so excited to be 3 months post transplant!  I only have 10 more days until my first goal of Day 100.  I had a doctor's appointment today and my counts were a little low.  Nothing to be too concerned about, but they all seem to be following a declining trend.  I'm not too worried because this has happened before.  The most concerning thing was that ALL of my counts were low today.  Usually it is just 1 or 2.  In addition, my liver tests were high.  Not too bad for a couple, but they ended up doing extra tests (indirect and direct bilirubin) to make sure that I wasn't getting graft vs host disease in my liver.  The extra tests came back ok, so the doctors are worried.   I know I worry way more than my doctor's do, but that is what happens when you understand the significance of your blood work and possibly what it can mean.  Good news though, my kidney tests are FINALLY back to normal!

Once I get to Day 100 and my counts are stable and I am healthy, I can go outside a 30 min radius from the hospital.  So, I want to go spend some time with my parents.  Nothing is set in stone, but my MIL and FIL got a little upset that I hadn't discussed this with them.  I hadn't even discussed it with my husband yet!   Anyway, I put their mind at ease, letting them know that I had thought everything through, and that I was going to try things out by staying a weekend and then deciding if it was a good idea.   I have to keep in mind that the hospital is going to be 2.5 hours away and need to ensure that I have plans in place for Kellan if he or I get sick.   So, still nothing finalized and I definitely want to get my Day 100 test results back before anything gets decided.

Anyway, on to another topic, I've noticed over the last couple of days that Kellan is getting separation anxiety.  I will walk out of the room for just a second and he starts wailing until I come back.  Gotta work more on his object permanence so this habit does continue :)

I get to go out tomorrow with my friends, Matt and Stephanie!  I'm so excited to get a chance to get out of the house!

Day 86 - Reminiscing

I just got done speaking to an old friend from college a little while ago.  I love thinking about that time.  College was one of my favorite parts of life for many reasons.  First, you get independence for the first time.  Nobody telling you what to do or where to be.  Then you have all the wonderful friends you meet.  I met my best friends in college.  In my life, I have met many people from all over, but my friends from college have always been a constant in my life.  You grow and learn so much during those years.  You begin to form your own identity.  Being from a small town in the midwest, you kind of tend to get labeled by who your parents are, or who your siblings were, or where you lived and what kind of car you had.  When I went to college, I got to start all over.  Nobody knew me and I loved it!  I just love thinking about all the fun times I had and sometimes wish I could go back in time and just stay there.  But, eventually we all grow up, become adults, get jobs, have families.  Life is so very short.  Thinking back, I just never could've imagined the topics that I speak to my friends about now.  It is no longer, what party are we going to or what time are you taking that history class.  Now its did you know so and so has this condition, or so and so got divorced, or where is so and so, I haven't spoken or seen them in 10 years.  Its amazing how life changes in such a short time. 

My labs looked pretty good this week.  My kidney tests are nearly normal (1.04, the normal range is .6-1.0).  My blood counts were good.  Day 100 is looking better and better!  Only 14 more days!

Thanks for all your support and prayers. Please continue to keep me and my family in your thoughts and prayers. Even after Day 100, I still have a long recovery period.  The first 100 days after transplant are the most critical, but there is still only a 50-60% survival rate through Day 365/Year 1.

Day 81 - Hair News

I am happy to report that my eyelashes and eyebrows have started growing back!  I didn't lose them all, but they were getting pretty sparse.  Hopefully my hair on my head will begin growing back soon.  Who knew how much a bald head affected your overall temperature.  I have been just freezing since I lost it.

Things are going really well.  I only have 19 more days until Day 100.  It is coming up so soon and I am getting so excited!

Day 76 And All Good News!

Went to the doctor today and everything was wonderful!  My labs are almost all normal!  Everything is stable and good. 

For my fellow aplastic anemia people, what have you heard or experienced at John Hopkins or University of Maryland.  I need to choose between the 2 and they are both equidistant from where we are going next.  I've heard good things about both places.

Day 75!

Wow! 3/4 of the way to Day 100!  I thought that Day 100 would never get here and now it is almost upon us!

Today marked a milestone...I got to discontinue one of my prophylactic medications, the antifungal that is assisting in my kidney tests to be high.  I go to the doctor tomorrow, so lets pray that everything remains good with my labs and symptoms and I don't have to go back on it.

Things have been going really well the past week.  I have been extremely fatigued as the doctor wants me to be "more active."   He told me last week that I should be walking a couple miles a day...silly doctor, I wouldn't even do that if I didn't have aplastic anemia!  I know I should be getting more exercise, but it is hard, when I am so tired from taking care of the baby.  I have had to start taking care of Kellan a lot more because of my in-laws' situation, so I have basically went from helping take care of Kellan to almost taking care of him completely.  It is hard, but someone has to do it.  I am very thankful that my mom has been able to come and help a couple of days a week.  She lives about 2.5 hours away, so it is quite a trek. 

I'm keeping my fingers crossed that the doctor will give me the ok to go visit my husband in Hawaii shortly after Day 100.  They are so worried about me catching the flu on the plane.  Why'd they give me that darn flu shot then?  Oh well, I'm pretty sure I can convince them eventually.  I just miss him so much!

As always, thank you for keeping me in your thoughts and prayers.  Please feel free to share my blog with friends and family.

Day 71

Its amazing what a little bit of sunshine and getting outdoors can do for you!

This last week has been the most difficult so far, not for symptoms, but emotionally.  This journey is mentally and emotionally draining, more than physically draining for me.  Though, they all are inter-related since you are physically drained from being emotionally and mentally drained.  Everyday this past week, I have had to tell myself over and over again, I just got to get through today.

Anyway, I feel like I am getting back to myself again.  I even laughed a couple of times today!  I got so much stuff done today even though I was tired from Kellan having a bad night last night (I was up at 2 am and probably only got a half hour sleep between then and 7:30 when he got up).  I felt so accompllished!  My day didn't start that way, but I'm glad it ended the way it did. 

I am happy to say, that I am looking forward to tomorrow!

Day 68

Hopeless, lost, hurt, angry, sad.