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

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

Tuesday, September 27, 2011

Day 62 With Good News!

In the beginnIing, because of my complicated situation of having AA, MDS and PHN, the doctor's told me that they would want me to get a little bit of graft vs host disease.  Well, right now that is exactly what I have a very mild form of GVHD in my skin.  We still don't know the GI results yet, but the meds seem to be working.  Also, we are now carefully watching my liver functions tests to see if they continue to go up, which would indicate a little bit of GVHD in my liver.  The blood chemistry results today could not be very accurate because I was not allowed to take my morning meds and wasn't allowed to drink water until 4:00 PM.  With that said, I am quite surprised that my kidney test came down a little again today.  My blood counts were exciting as well, my WBC, RBC, HGB and platelet count all went up from Friday.  I'm wondering if I had just a slight little bug that got me down for a week.  Anyway, I walked out of the clinic today happy as a lark!

I'm also excited to report that my winter clothes came today!  Hopefully no more coat wearing in the house anymore!  But what also came with my winter clothes was my Wii!  I set it up (unsuccessfully).  I have a feeling the technology here at my in-laws may be a little too outdated for the Wii.  If anyone wants to jump in and tell me how to do it, I'll explain that I hooked the co-axial cables into the digital cable box because it was the only thing that had outlets for them.  I first had them in Audio out 2, then switched to the ones on the front of the Time Warner box.  I looked at their DVD player, but I don't think theirs has addition hookups in the back.  So my Wii is hooked up through the cable box and that is as far as I got.

My father-in -law is going back to work next Monday for about a month.  If you know of anyone in the KC area that would like to help with babysitting in the morning we'd really appreciate it.  Hours would be from 7-10 and probably only on Monday, Thursday and Friday.  Ideally we would like someone to volunteer their time, but understand that in this economy, that is most likely impossible.  Please pass me an email if you know of anyone interested and a basic biography of them if I don't know them. 

So today I feel pretty good, about as good as I have felt in a long while.  It is amazing how a little bit of news can change your whole day!

Today I ask that you pray for my husband.  He is about to take his board tomorrow.  It is kind of like when doctors go before a board to get board certified.  This is the last puzzle piece we need to have to going on our next adventure after I get better (which Day 100 is only 38 days away!)  We need him to pass this more than anything.  Please pray for him to have the stamina, courage, knowledge and confidence he needs to pass this.

Saturday, September 24, 2011

Day 59 - Not So Good News

Friday I went to the clinic to get my counts repeated from Tuesday.  They really just wanted to retest my kidney function test, but did a CBC as well.  Neither result came back good.  My kidney tests are staying the same, so the longer they are high, the more at risk I am for permanant kidney damage (though I'm pretty sure we are a long way away from that occurring).  The more disappointing news was my counts dropped, specifically my platelets.  They went down 30,000 in 3 days.  Not a good sign.  I have also been have some "stomach" troubles and had that evaluated.  The doctor is pretty sure that it is graft vs host disease in my GI tract.  I also went to the dermatologist on Friday and had 2 biopsies done, to confirm skin graft vs host disease.  So they put me on some steroids for my GI tract.  Monday I go in for a GI biopsy (how fun).  There is some good news, I will get my trifusion catheter taken out on Thursday (pending all these appointments).  I will be so excited about that!  I dislike the catheter greatly because it is a pain to take a shower.  Nothing works covering it up and keeping water out of it.

Kellan had his 6 month appointment on Friday as well.  He weighs 19 lb 2 oz.  So he is a little chunk.  We started him on baby food in addition to cereal today.  He had green beans today, he seemed to like them.

This week I got a love package from my friend LeeAnne who sent me 2 hats and 2 wigs.  They are just great!  Love you lots LeeAnne!  I also got a package from my husband that included a Mizzou hat and jacket!  Thank you baby! We got a honey baked ham and pie from the Golden's and a burrito casserole from one of my mother-in-laws friends.  Food is always welcomed in this house. :) Lastly I got a letter from one of my followers.  I think that it was the best out of all the packages!  Please pray for this friend who is about to endure an investigational treatment for Aplastic Anemia.  She is going to need lots of love and support from everyone.

I also got some hobbies from Hobby Lobby today so that I have something other to do than sleep and watch tv.  (Though sleeping is a hobby of mine for a long time if you know me well enough!)

Big day tomorrow, have to go to the clinic and go to Walmart with Kellan and my parents.  I should probably double my morning ativan :)

I have a fundraising idea that I would like feedback on.  I would like to sell pre-painted jack-o-lanterns for Halloween/Football Season.  There would be no carving and they would be sports themed since there are so many teams in the area.  I don't know how much a pumpkin costs, but if I could get some help with the painting I could probably sell them on  craigslist or at craft shows and make maybe $5.  Any thoughts?  And btw, we would use patterns, this girl ain't got no artist in her :)

Please tell your friends about helping out with donations as well.  Maybe you can't afford $25, but if you got people say at work or your closest friends to donate a couple of dollars here and there, you could get $25 very easily!

Please continue to get me and my family in your prayers and thoughts!  They mean a lot to us.

Sunday, September 18, 2011

Day 53

I feel extremely frustrated with my situation right now.  I feel better, but yet I'm not.  I want to go do stuff on my own, and can't.  I want to eat foods like pepper, without thinking twice, but I must not.  This is all stemming from yesterday's encounter at the clinic when I was told that it was pretty much a can NOT do to go to Hawaii after Day 100.  I don't see why not.  First of all, they don't have the flu in Hawaii and if they do, it is usually contained within the "tourist" population.  Second of all, that's where I currently live.  They are telling me I can't go home!  I WANT TO GO HOME!  And only for a week or two.  Out of rebellion, today I ate a donut from Casey's which I'm not allowed to eat and made it worse by it being a Day Old donut.  Then at dinner, I ate cold roast beef.  I may regret this, but I was just at a point today where I just wanted to say ^&*%$ it! (I at least microwaved my pepper)

I am just going to keep doing what I'm doing and prove to these doctors that there are people who can make it through recovery in 100 days.  Just like I proved to Dr. McGuirk that I wasn't going to die in my hospital bed of a bad attitude.  And how I proved to them that it doesn't always get worse before it gets better.

Obviously, I am having a pretty bad day.  I did a good job of covering it up.  I didn't want to ruin my parent's visit with Kellan.

One day at a time, tomorrow will be better....

Saturday, September 17, 2011

Day 52

I went to the dr today for an unscheduled visit for something that looked like a rash on my arm.  And because I got myself paranoid about dematologic graft vs host disease.  There was good news and bad news.  The good news is that the Nurse Practitioner does not think it is GVHD.  The bad news is that she told me that she was not going to let me go back to Hawaii on Day 100, even if I am feeling better.  I threw my adult temper tantrum, wollowed in my own self pity, then went shopping for Kellan.  The shopping made me feel better.  We got him a jumparoo.  His legs are a little short for it.

For my followers, don't hesitate to post my blog entries on facebook or twitter or whatever you can.  I actually encourage it.  Just click on the icon at the bottom of the post.  It may be grayed out.  If you aren't already logged into the program, it will make you log in (just a warning so that you aren't afraid its going to steal your password or anything). 

As always, thank you for your prayers, thoughts and support.  My parents and Aunt Jenny are coming tomorrow to help me with the baby.  It should be a fun day!

Thursday, September 15, 2011

Halfway There!

Today is Day 50!  I am so very excited, we went out and I bought cheesecake and an ice cream cake to celebrate! Now I've had too much sugar and can't sleep :)  I can't believe that we are halfway to Day 100! It seemed so far away when this all started and now it is going by so fast!

Tuesday was my doctor's appointment at the clinic.  Very good news there as well.  The BK polyoma virus is nearly undetectable, so they took me off all those meds, including the IV anti-viral!  Yeah! My platelet count dropped, but nobody seemed concerned so I wasn't either.  My other blood counts are doing well and I feel like I am getting some of my energy back.  I've even cooked a couple of times!  My kidney tests came back the same as last week, so I'm drinking water like crazy and trying to get that down.

Wednesday, we had the DeGhelder family over for Chris's going away.  Chris and Anita are moving and they have been so wonderful to us, we cannot thank them enough!  We will miss them and I'm glad that we got to have a family dinner before they left (minus Ryan, but he was there in spirit).

Nobody believes me, but I'm booking my ticket back to Honolulu for November 4th (Day 100)!  Everyone keeps telling me to not to get my hopes up.  I'm not, I just know I will be ready!

Here something to laugh about.  My nurse on Tuesday came into my room and as she was introducing herself, I interrupted her.  I told her I knew who she was, she was my neighbor across the hall in Freddy!  (Freddy was the dorm at SMSU, now SMU).  I hadn't see or heard from her for like 14 years, and here she is as my nurse.  The funny part about this is that last time I knew her, she was a stripper :)

We still need lots of prayers and thoughts and love coming this way.  We found out that we are responsible for my donor's traveling costs, which are quite a bit considering they made him drive over 100 miles one way at least a dozen times or more, plus food, etc.  Glad we didn't have to fly someone in from Europe!

Ok, goodnight all!  Hope everyone has a fantastic Friday and an excellent weekend!

Monday, September 12, 2011

Day 47

Not much to report today.  I have been having a lot more energy lately, meaning, I can stay awake throughout the day.  Trust me, I want to sleep, but between spending time with Kellan and running errands, picking up prescriptions, making unscheduled visits to the clinic,  I don't have a lot of time.  I don't know how my mother and father in law are doing it.  Thank goodness we are almost halfway there!

If you were having trouble becoming a follower, go to Day 36 and read Ashley's comment. 

Don't forget to spread the word about donations.  I believe we just incurred a cost that we though was going to be paid for, but now its not.

Thanks again for all your prayers and support that continue throughout my recovery. 

Friday, September 9, 2011

Day 44

56 more days left...we are almost halfway home, literally :)  November 4th is Day 100, and by golly I am going to have a ticket booked to Hawaii that day for Kellan and I.  As you can tell I am getting a little antsy.  I still have a long way to go though in 56 days.  My fatigue is still really bad.  We went grocery shopping for about an hour and came home to have to take a 3 hour nap.  Well, the nap was mostly so I would have energy for game night tonight with the niece and nephew.  Game night, of course, was fun.  Isaiah won battleship, Alisa and I won the alphabet game (twice), and then I won Master Chatters or something like that.  It was fun to get to spend some time with them before they head of to San Jose at the end of the month.  11/12 of the DeGhelder family are in the Kansas City area, at the end of the month/beginning of next month it will be 7/12 and at the beginning of November it will be 5/12.  I know my in-laws really appreciate having most of their family here close to them, even if for a short time, but I think that it is going to be hard to see my brother in-law and his family move to San Jose.

No real news on the medical front, no doctors appointments until Monday, in which I have to meet a PCP that I will never go to ever again so that they know who I am when they start getting all these referrals/authorizations.  Then Tuesday, I have my IV anti-viral infusion/dr appointment at the BMT clinic. So till then we should be good!

I really haven't been working on the emotional part of my healing really well.  I do actually do the 2 things I love doing most, sleeping and watching movies!  I'd like to just get out and do something on my own though, no chaperone/caregiver.  I just need to be patient and it will come.

The donation stuff is finalized.  I'm not sure how to get on the blog, but I am going to try my hardest tonight.

The nicest thing happened to me today, a random person in Walmart came up to me and touched me on the shoulder and said "Praying for you baby" and walked away.  So nice!

Wednesday, September 7, 2011

Day 42

Sorry it has been a while since my last post...as the doctor's always say, no news is good news, right?

My labs are still looking good.  My kidney tests are still coming down which is good.  They have decreased my appointments now to weekly.  So for the next couple of weeks I'm getting an antiviral through the IV at my appointments and as long as my blood counts are good, no further treatments are needed!  (Well except for the bajillion pills I have to take every day).

I was really fatigued today I guess.  Came home from getting labs done, probably around 10.  I went back to bed and slept till 5.  I couldn't believe it.  I sure hope I can sleep tonight.  I don't think I'm going to have any problem though.

My parents came up on Sunday and saw me and helped me take care of Kellan and my friends, Matt and Stephanie visited yesterday!  Its so nice to have visitors!  It really got my spirits up to see some friends and visit with people other than my in-laws (no offense Joe and Susie :) )  I really wished I could've gotten Kellan in the pool before it closed, but oh well, it got cold really fast and time just got away from us.

We just finalized the letter for the tax deductible donation thing, so hopefully it will be up and running by the end of this week or next if you are still waiting to donate.  Even if you can't donate, we always appreciate your thoughts and prayers!

Thursday, September 1, 2011

Day 36

Went to doctor today and I feel pretty good about the visit.  I got all of my questions answered, well most of them got answered, the others I got the typical "we don't know" answer.  Oh well.  My blood counts came back steady, though my platelets are trending down.  I'm not going to worry about this until the doctors worry about it though.  It is probably nothing.  My kidney tests came back a little better today, still high, but getting closer to normal.

When I talked with my husband last night, he brought up an interesting point.  He is going through this with me even if I am 5000 miles away and it affects him too.  He stated that he doesn't know how to differentiate between feeling sorry for himself, wanting/needing attention or actually feeling sad.  I have to agree, I don't know where those lines are either.  When people ask me how I am doing, I always say "fine."  It seems like the neutral feeling to have when you don't know what category you are in.  Maybe I'm not just "fine," maybe I need to tell someone I am sad and want a shoulder to cry on or someone to talk to, but I'm afraid, people might see me as being in the "needing/wanting" attention group.  I hope that makes sense.

I have a 4 day weekend this weekend.  Anita is going to come over on Saturday and help me with Kellan.  We are going to take him to the pool.  Don't worry, I'll fully protect myself from the sun and Kellan too, we all know how transparent he is :)

Well I think that is all for tonight.  Thank you for your thoughts and prayers!

Also, if someone could comment on how to become a "follower" I'd appreciate it.  Several people have had trouble.