Aug 27, 2017 Latest post:
Dec 26, 2017
To all my family and friends. This has been a long process and then is still a long road ahead to full recovery. Thank you for your patience and kindness through this. Thanks to KU, we were able to create this site to tell our story, get help, kind thoughts and wishes and all of the above. With Jose being the only person right now to assist with me and the household we are moving at a slow pace. Taking things one day at a time. So please continue to be patient as we are learning with all of you! Most people ask what happened how did it start.
It all started around the weekend July 20th 2017. I noticed these little tiny red bumps on my thighs that seemed like razor bumps(later to be called petechiae). After a few days small bruises on my thighs. I didn't think anything of it as I just started working out at the gym for the first time last week. As the days progressed the bruises got darker and the spots began to spread all over my legs and eventually moved up into my body. Still no concern. I felt great! I was not exhausted or fatigued and started taking vitamins. Maybe I just needed to adjust my diet to my new workout. Well come July 28th my period started. Normal it was light and warned me just as expected. Nothing concerning. Until Saturday evening July 29th I noticed I was actually having a full period which I never really do. I went ahead and went to a family quince. But that's when it happened. .. My period just got extremely heavy. I had to leave to go to the grocery store to buy things to control it. I wanted to leave within an hour getting there but I also wanted to hang out and let my kids enjoy their friends. I made it through the night changing about every hour. Yes I was willing to make the sacrifice. And looking back I was glad I had one last night with them.
So I was suppose to start my new job with the county on Monday, I had completed everything I needed the prior week. It had been in the works for months now and I had been working hard to get on with JCDS employment services. I decided on Sunday it probably wouldn't be a good idea to go to work on first day and get all the breaks that I needed to control me bleeding and decided to go to urgent care in the morning. The NP was a little concerned but nothing that couldn't be a quick fix, maybe birth control to slow down the bleeding or some steroids if my counts were to low. By 5pm that Sunday evening I received the call that would change my life. I could hear it in her voice. It didn't sound good. She told me that my blood count platelets she assumed were not only low but at a critical low. The average person carried 150-400 count mine was at 3. Meaning I had nothing. Platelets help your body clot. She told me to do nothing the rest of the day. I would get a call from a hematologist in the morning if not then I need to check into the emergency room. Of course I asked about work. I told her no cause I started work tomorrow. And she said NO you are not working right now, your life is on the line. DO NOT shave, floss, or cut yourself. I said okay but.. yes I left to store to get more pads for my bleeding. I really didn't understand the seriousness of it.
I received the call from the specialist and they were able to see me in the morning at 11. There the doctor saw my counts and preliminary diagnosed me with ITP. Low levels of platelets that can be treated with steroids with in home or at the hospital depending on the severity. Labs were done again to confirm my counts. I still did not comprehend or process the information that was giving to me. I was sure I was going to go home and be treated. After refusal and never being admitted to the hospital I finally talked to the doctor and he really gave me no choice. I was admitted to Olathe Monday afternoon. We waited all evening to get medline put in my arm due to the high risk of bleeding out. However there was only one person in the entire hospital who did this!! The doctor called frequently waiting for them to get started on treatment. My nurse at the time was not comfortable putting in an IV and it wasn't until 5pm she went ahead and put the IV in me to start the medication. Worst pain in my life. I wanted so bad to pull the IV out. Thank God by 6pm I was finally able to get the medline in my arm.
The next two days my labs were checked like clockwork. 5am they woke me up and by 7am the doctor was in meeting with us. Tuesday the doctor was concerned as he noticed my other blood levels were beginning to drop. He continued treatment and explained to us the different routes this could go. Of course tons of blood work and testing to figure what happened and how in such a short amount of time. We were forewarned about my bone marrow but we stayed far away from that as possible. By Wednesday the doctors’ tone changed and he seemed concerned. He was doing his research and talking to other doctors from other places and doing things we were not fully aware of to figure out what was going on. He decided on Wednesday that he would go ahead and order a bone marrow biopsy. He felt comfortable doing it rather than having me wait till Friday which appeared to be his original plan. Biopsy was completed and Thursday morning like clockwork the doctor informed us that he is transferring me to KU. The preliminary results from the biopsy liquid did not look good. He wants them to look at me and felt I was in better hands with them with the resources that they had available. He assured me he would continue to watch me from there and follow my progress and take me back at anytime needed.
I had enough time to eat lunch and off we were to KU Thursday afternoon. I had the opportunity for Jose to drive down to KU and stop by my childhood church and have the priest pray over me!! Before being admitted. My sisters and mom were able to be with me during this time. The doctor came to see me and immediately diagnosed me with Severe Aplastic Anemia. He spoke about bone marrow transplant, which we didn't even know was an option. We didn't know what it was but heard about it in the previous days. All we knew is that was not what I wanted to hear. They wanted to do more testing to rule out any cancers and complete another biopsy. We were all in shock we didn't understand what was going on or what was happening. It was all a fog. They are telling me that my bone marrow has failed and stopped working. I am there for a reason and it’s not just to get checked out. All afternoon I was poked at getting a live biopsy, ct scan, and picc line put in. Trying to contact family and friends. We didn't know what was going on.
By Friday morning August 4 2017 I was officially diagnosed with Severe Aplastic Anemia. The doctor immediately wanted to move toward bone marrow transplant of my siblings. Due to not having insurance (I have insurance now!) we had to move forward with medication treatment. It was going to be intense inpatient treatment for 4 days and the rest would be outpatient treatment until insurance kicked in. We still don't know anything about this disease but all I kept hearing from the nurses was "at least you don't have cancer!". I don't even know what that means. To me this was like cancer. Treatment was to look like cancer expect without the cancer cells. It may never go away or I can go into remission and relapse. It would turn into another disease PNS or MDS. So I'm not sure what it means since I've never had either or. We were at the hospital for 5 days and discharged Wednesday August 9th. Treatment went good, my body took to the medication. I was to move to outpatient treatment with another doctor at KU Cancer Center. I originally started 2 days a week however my number began to drop and I was beginning to bleed. I am now going into the clinic everyday to get my labs drawn and have transfusions as needed. We are currently in the process of testing my 4 siblings during this treatment process.
So many people called, text, visited to show support and love. There is no way we could ever repay anyone. It was and still is hard to ask for help. But this is only the beginning.
We have been told that when and if I get the transplant (with a sibling match) it is going to move fairly quickly. They want to complete everything in the next 2 weeks (matching and testing) to lower the risk of either I or my sibling donor of getting any kind of infection. I will be in the hospital for 4 weeks after we start. 1 week of chemo/radiation and about 3 weeks for the transplant. That's if everything goes well and my body does not reject it. After that I will be at home for the next 100 days with a needed full time personal caregiver. I will not be allowed to do anything or go anywhere. I can't cook or clean or even work. But I guess I can still help with HW and running the household calendar. I will have to be creative. My focus is my health and getting my strength back. This will push us into the holidays. I will meet with the doctors at 3 months after 100 days to test and then again at 6 months. So about a year to know if treatment worked. This is best case scenario for a young healthy female. There are other what ifs and options but we will keep everyone updated as we get information. That is why we have created this website as Jose and my kids are going to need ALL the support that they can get. This is going to be a long drawn out journey. However we are in good spirits and believe GOD has made and set his plan for us. We trust in him. Remember to love and hold those close to you! Don't regret today. Life is too short.
God bless all my family, friends, and our new friends that we will meet in this journey.