I'm still here

I hope everyone had a great Thanksgiving holiday. I had a great lunch with my family and we even got to see a little bit of snow.

Everything has been going very well for me. Every Monday I go for lab work and so far they have all looked good. I finally feel like myself again. As far as the donor search, things are finally starting to look up. I got word that 3 people have made appointments for additional blood work. Once the blood samples arrive in Dallas it will take 2-3 weeks to determine if anyone will be a perfect match for me. I feel good that one of them will be my donor. I am still waiting to find out if I will have another round of chemo before my transplant. Since it has been over a month since I left the hospital and the donor search is taking longer than we thought, I might need more chemo to make sure I stay in remission. This round is much easier because I will only have to be in the hospital for a week and I get to recover at home. I hope to know something this week if that is going to happen.

Thanks for checking on me.

How to be a donor

Sorry it has taken me so long to update with the information on how to become a donor. All this information comes from the National Marrow Donor Program's website www.marrow.org. It is a good resource for information about the donation process. When you go to the website click on the tab How You Can Help and then click on Join the Registry. You can join online or in person at any of the donation centers listed below.

The Blood Center of Central Texas
4300 North Lamar Boulevard
Austin, TX 78765-4679
(512) 206-1242

Baylor University Medical Center NMDP Donor Center
3409 Worth Street Suite 600, Sammons Tower
Dallas, TX 75246-2029
(214) 820-4279 (800) 4-BAYLOR
http://www.baylorhealth.com

Carter Blood Care
2110 Research Row Suite 613
Dallas, TX 75235
(214) 217-5663 (800) DONATE-4
http://www.nmdpdallas.org

Cook Children's
801 Seventh Avenue
Fort Worth, TX 76104-2733
(682) 885-7562 (800) 643-2448

Baylor College of Medicine Donor Center
1 Baylor Plaza M.S. BCM-285, Room 672E
Houston, TX 77030-3411
(713) 798-3360

South Texas Blood and Tissue Center
6211 IH 10 West
San Antonio, TX 78201-2023
(210) 731-5555 (800) 292-5534
http://www.southtexasblood.org

Sorry it's been so long

Since I have been home not a lot of exciting things have been going on. I do a lot of reading, sleep late and watch tv. Not all that interesting.

Mom and I made the drive to Dallas to meet the transplant doctor. He is a really nice man. He answered all my questions as best as he could and spent about 45 minutes with us. He made me feel better about the whole process. I feel good about him as my doctor. I also got to meet my search coordinator. She is very nice and is working hard to find my donor. We still have no time line on when the transplant is going to take place. I think that is the hardest part. I want to know when this is going to happen so I can start my new life. After transplant I will have a brand new immune system. Because of that I will have a better chance of staying in remission for a very long time.

I did find out that donating bone marrow is much easier than it use to be. You don't have to go thru what I do and have it extracted from the bone. Now they hook you up to a machine that will take the blood and run it thru a machine to extract the cells and then the blood will be put back into your body. This way you have no recovery time. I have the information if anyone would like to be a part of the National Bone Marrow Registry. You might not be able to help me, but you may be able to save another person's life.

TGIF

Well I wanted to update everyone on the donor search. I spoke with my donor coordinator yesterday and she said after they received all my blood typing they put all my information into the donor database and I have 315 potential matches! I can't believe the number. Granted not all are perfect matches, but the fact that I have so many is encouraging. I received funding from the National Marrow Donor Program to test 4 potential donors. They were starting to contact them yesterday. It should be a couple of weeks before we know if any of them are going to be my donor. I am happy that they have started the search. I have a feeling that it will take a month or more to find my donor and get started with the transplant.

Injections are going well. We started them last night at 10pm. I am very proud that my mom was able to give me a shot. It is really not that bad.

Exciting day

I had some excitement today. The nurse told me when I left the hospital that if I had pain or swelling in my right arm to go see the doctor. Well on Tuesday I started having some pain under my right arm. I called the nurse this morning and she said I should go for a Doppler study to check to see if I had a blood clot. Well they found that I had two clots in two different veins. So at my doctors office they did blood work to check to see if my platelets were high enough and they wanted to take out my picc line. The picc line is great for a short amount of time, but a side effect is blood clots. Taking it out was easy. Taking the bandage off was more painful than actually taking it out. So to get rid of the blood clot I have to be on blood thinners. I don't mind taking the medication, but it also involves giving myself injections. I am not a needle person and I really don't think I could give myself injections. I had my dad learn so he could be the one to give them to me. The needle is so small that it doesn't hurt, but I get so much anxiety that I work myself up about it. I am getting better around needles, but that fear is still there. Hopefully after getting injections every 12 hours for the next week will cure me of my fear.

Writing this from home!

I was finally able to leave the hospital today. My doctor wanted to do my last bone marrow biopsy this morning and then afterwards I was free to leave. Talk about happy. I was so ready to leave. As soon as I knew I was going home I was taking everything off the walls and packing my suitcase. I was out of the hospital by noon. It is so nice to be home. I laid in my bed and took a 2 hour nap uninterrupted. I go for lab work on Thursday and have a follow-up appointment with my doctor on Monday. Other than that I have nothing going on. Feel free to call me at home 817-249-1770.

How could I forget

I forgot what yesterday was until late in the afternoon. I had my sister look at the calendar to confirm what I thought. Yesterday was the 2 year anniversary of the first time I was diagnosed with Leukemia. It was the day my life changed. I believe for the better, even though at the time I was scared. At the time things happened so fast. I got the call at school from my doctor. He had tracked me down at school, never a good thing. I was not expecting what he told me over the phone. He said that there was something wrong with my blood and he thought I had Leukemia. Hearing those words made my knees weak. Then he said he had spoken with an oncologist in Temple and they are waiting for me. I was to leave right away and get myself to Temple. I had no time to process all that was going on until later. Everything after that was a blur. I was admitted to a room, bone marrow biopsied, port placed, heart scanned, and chemo started all within 24 hours.

Going thru all that then and now I know I am a stronger person. I don't take things for granted like I use to. I stand up for myself more and fight for what I need. Life has more meaning and I want to live to be a very old woman. God has a plan for me and I know he wants me to be around a very long time.

I am still fever free. I will be getting what I hope to be my last blood transfusion today. All my other counts are still on the rise. I am keeping my fingers crossed that I will be going home very soon.