Day one of treatment July 11

So the treatment started today and it turned out to be very long unsuccessful day! I spent over five hours at the clinic! Once the medicine finally started I had a reaction about 8 minutes after it hit my body! I got really hot and clammy and very nauseous. They stopped the medicine almost immediately I cooled down and started to feel better. They decided to give me more benadryl and another drug to help the side effects stay minimal. I need to go to the bathroom and I got up to go and my mom was helping me. We were trying to get all the machinery away from the bathroom door and I passed out luckily my mom was close and nurse came fast and helped me to the ground. I woke up on the floor super disoriented and freaked out! They got me back in bed and got everything restarted we just went slow at first to see what I could tolerate once they got up to normal speed I got really nauseous and I threw up and got really shaky and cold! At that point the doctor decided to stop for the day and start again tomorrow! Let's hope my body can tolerate it better!
Again thank you for the love and support!

Well things have been uneventful as far as my health goes! The only thing that has happened since my last post is that I had my galbladder taken out. It was a very easy experience and I have been feeling pretty good without it! The future has a lot in store. My doctors and I have decided to try the drug treatment again. It must have worked a little because my bone marrow has been working, just not as much as it should be!!! So in nine days I will start the treatment again. This time we will try it in combination with a drug called tacrolimus it is a lot like the cyclosporine but hopefully my body will tolerate it better! As long as I don't have any seizures I will be able to stay on it longer and hopefully my bone marrow will respond to it! We are being optimistic that it will work and things will improve so I don't have to have a transplant!! It will be a rough couple of weeks I just hope I can deal with all the side effects and the doctors and I can work together to get through the rough weeks ahead! Thank you everyone for your continued support and love!!!

No new news!

I just wanted to let everyone know I am doing good! I haven't had any news to post so I haven't! I talked to the Salt Lake hospital today and they are going to discuss doing the drug treatment again to see if it will work and to see if my body can handle the drugs! I go see my doctor here on Wednesday. He hopefully will have more info for me the Salt Lake doctors are going to talk with him and come up with a plan so we shall see!! Thank you again for the thoughts and Prayers! You will never know how much it means to me!!

Long time!!

I haven't had much to post lately because the doctors pulled me off of all of my medications! They aren't sure what caused the seizures so they don't want to have anymore! The last two weeks I have been to the doctor twice, last week and then again today. Last week my platelets were 11,000 and then this week they are up to 18,000! Which as far as I am concerned is a good sign! I haven't had to have any type of transfusions for three weeks! It has been really nice to feel better plus not be spending so much time at the doctor! I still have to be careful not to catch any sickness and I have to watch my energy levels and be careful not to do too much! But things are looking up! I go see some bone marrow specialists on Friday in Salt Lake City, and we are hoping they can give us some options of were to go from here! After that appointment I will update the blog about how things went! I am hoping and praying things go well and that they are happy with the progress. Thank you so much to everyone for all the love and support and especially the prayers! I love you all!

Rest and sort of relaxation!

Ok so after that weekend of crazy, I decided I need to rest!!!! LOL I haven't had any more things happen thank goodness!!! I went to the doctor on Monday and because so many different things could cause my seizures to happen he took me off of everything but Tylenol. Well little did I know even though I was only on the steroid for two weeks, I still had to deal with withdrawal symptoms!! Holy Crap! I am soooooo shaky and in sooooo much pain! It is like my knees forgot how not to hurt!! Well for my rest we went Kelton UT and then on to Boise to take my dad to the airport!! I know doesn't sound like rest but actually it was really nice to get away!! Plus it was good timing for Gary he has a lot going on for baseball and need a break for watching my every move!!! That might be the hardest thing for me to understand! He feels the need to watch me and make sure I am ok! I don't feel like an handicapped person but everyone treats me with white gloves!! I know that it was scary to experience me having seizures, but it has been a week lets try to move on!!! LOL if only it was that easy!!! Oh well I love my family and my husband and understand it hard to not make sure I am ok! Thank you again to everyone who has helped me and continues to help me!!! Thank you to everyone who has brought us dinner and everyone who has driven me somewhere!! I love you all Thank you!

The next weekend from hell!!

Well nothing went as planned this weekend! I helped at the spring fair Thursday afternoon for about four hours!! Man it took it out of me! It is hard for me to understand my new limits!! Then after that I wanted to go shopping for the the weekend events! I also wanted to get my eyebrows waxed! Apparently I did way tooo much!! I was prettty tired so I took my night time regiment of pills and went to bed! I was up about every hour needing to go to the bathroom, man I was sick of peeing! At about three am I woke to pee and decided I should take more sleeping help pills! I grabbed a bowl of cereal and then noticed my eyes wigged out and I couldn't see to get a spoon so Gary helped me get a spoon and get back in bed! Shortly after that I apparently had a seizure. Gary heard a thud and came in the room and found me on the floor. In the middle of it! I came out of disoriented but ok! He was amazing helped me change and get back to the chair so I could sleep! Well I was a couple of more times to pee and poor Gary every time I moved he about lost it! Then at seven am I apparently had another seizure so Gary recognized it and called 911 before I knew it there was a ton of people at my house my mom and brother included and I was on the way to the hospital! When we got to the hospital I felt ok so they were just watching me and checking my levels! I had a really high bilirubin levels and so I was really yellow! At about 10 am with everyone in the room I had yet another seizure! I bite my tongue a lot and bit a stick in half! Gary and mom kinda freaked and had to leave the room! Erika and my mother in law Darlene stayed with me and helped me thank goodness!  They admitted me to the hospital and I stayed until this afternoon! Nothing else happened in that time thank goodness! I am extremely tired and need to learn how to rest! I find out tomorrow what the doctors plan is for medication and the next step! I am worried about what they will say but hopefully we can figure out that I was just tooo tired and dehydrated and I can start back on my pills and get back on the road to recovery!!!  

A better update for the day!

I went to the doctor today and my platelet counts are 14 and everything else is golding for now!!! Sad news is my Aunt Linda passed away this morning! Come hell or high water I will be at the funeral saturday regardless of my body so it better cooperate!!!! I loved you Aunt Linda more than you know! I am sorry I did take more advantage of time you had with our family!! You were amazing and I will never forget the song you made up for my son Dalyn it was my favorite tune ever!!! I am glad you have been released from your pain and suffering! Thank you for sharing your sweet spirit with us! You are a very important part of the Byington family! we all love you!