Tuesday, January 11, 2011
|Joanna measuring our whopping 3 inches!!|
|GiGI, Suki and Belle "catching" snowballs.|
Joanna and Craig had a blast in the snow with the girls. We typically don't get snow in Charlotte so when it does we get SO excited, like it's Christmas! Unfortunatly for most of the day I was at work because, of course, hospitals don't close. Allan didn't close his office but Craig and Joanna got to stay home and spend some time with all of the furry girls. They love catching snowballs thrown at them.
Thursday, January 6, 2011
Wednesday, January 5, 2011
Last year at this time I was really having a hard time. My mom has been sick with a brain tumor for several years. In the spring of 2007 she had a biopsy of the tumor in Chapel Hill, NC. At that time it was determined the best corse of treatment was oral chemotherapy. She continued on that corse of treatment for a year. During that time her care was transfered back down to Charlotte. After a few years of watching the tumor and taking oral chemo the tumor began to grow again. It was decided that she needed to have radiation therapy to kill the tumor. The rediation did not work. A few weeks later (Spetember 2010) the doctors changed her chemotherapy to a more aggressive therapy. This was not working. Mom and dad did not want to tell us kids what was going on. They did not want to worry us all. In the mean time dad started a job that required him to travel a lot. Us kids would take turns taking mom to her appointments. One appointment in September I took her to the doctor. He pulled me into a confrence room by myself and told me that my mom was dying. He said that they had done all that there was to do and that we need to take her home and make her as comfortable as possible. Before mom started her chemo in Spetember I had a strong feeling that we needed to fast for her as a family. During that fast and as part of her blessing she was told that she would heal completly from this illness. Actually she had has 3 blessings over 2010 all of which told her that she would recover from this illness and she would heal. So, you can imagine my complete shock, horror and just plain terror when the doctor sat me down, all by myself, and told me that she was going to die! I knew something was wrong. How could this be? I was in such shock that I couldn't think straight. I immediately started praying and looking for answers. I told the doctor that we still wanted to treat her and that I would need to talk to my family about the situation. My mom was so SICK! She does not remember about 6 months of 2010. She was weak, losing her hair, losing weight and we were even having to feed her. So, the doctors diagnosis and recomendations for withdrawl of chemotheray made the most sense to me but I remembered her blessings and knew there was more that I needed to do. The only thing that made me question thier medical knowledge was the blessings that she had recieved. I fasted and prayed for weeks. I researched her illness day and night. There were times that I would wake up in the middle of the night and have thoughts of the next step to take. One evening I was researching second opinions (for the 100th time) and I ran across the NIH (National Institute of Health). I felt like this was the right move to make. I didn't know how much it would cost or if they would even see her but I called. At this point I was looking for an expermental trial that would cure her. I knew there was something out there that would help. I sopke with the patient care coordinator and she stated that I needed to get ALL of her medical information and a recent MRI within the next 2 weeks. That was very time consuming and diffucult because she had seen so many doctors in so many different places but I did it. I remember at one point sitting down in the hall at my house and just crying and praying saying "this is too hard, I can't take this pressure and stress. Please help me know what to do for my mom." I have been through 13 years on infertility, lots of dissappointment, sorrow and pain, but this was much harder. I felt like I wasn't doing enough and I was letting her down. Dad and I went to her doctor here in Charlotte to speak to him about transfering her care up to the NIH. The morning that we went into talk to him mom could barley walk. I remember helping her get on the doctor's examination table and holding her upright because she couldn't sit up on her own. When the doctor walked in and we told him that we were going to drive her to Maryland to have a second opinion he was not happy. He told us that we were being selfish, that she would never qualify for a trial because she was so weak. From the outside looking in I am sure it looked as though we were making a big mistake and did not know what we were doing. Medically, if I did not have faith in her blessings and know that God can preform miracles , I would have siad the same things that the doctor was saying. In all of my research, there was no obvious medical information about her tumors that gave me hope of her recovering. It was pure faith that we took her to the NIH. We made her a bed in the back of dad's big SUV so that she would have a comfortabe trip. I almost turned around right after we started out because I began to doubt that anything could be done and that maybe we were being selfish. I kept driving. I felt it was the right thing to do and I knew that if she didn't make it I would never forgive myself for not geting a second opinion. So, we made it to Maryland, had more MRI scans and saw all of the doctors (took about 2 days). After seeing a barrage of doctors and nurses "the" doctor came into the room. Dad and I couldn't contain our questions. We both said, "so, is there a trial that she qualifies for?" He said well, after looking at all of the information your mom has a glioma that is treatable with medication that has already been FDA approved! It turns out that over the last 3 years the doctors have not had her on the correct chemotherapy for the genetic type of tumor that she has. He told us that he would take over her care and that her tumor was far advanced but the chemo approved for her tumor was very effective and he was optomistic. So we went from doctors telling us she wouldn't make it a few weeks to doctors telling us they had a possible cure for her! WHAT A MIRACLE, WHAT A BLESSING! Dad and I cried and hugged the doctors. It was going to be a long road but what a miracle! Over 2010 she has completed the treatment for her tumors that she initially went there for. As of her December 2010 scan they are almost completly gone! Now, because she had radiation (Gamma knife) she is having a lot of brain swelling which is spawning more smaller aggressive tumors. So, she just switched her chemotherapy to a different one that is milder and aslo very effective for these radiation tumors. If she would not have had the Gamma Knife (a treatment the doctors in Charlotte used that the NIH said is completly ineffective for her initial type of tumor) she would be tumor free now. But, we are looking ahead and not back. We know that the Lord has plans for her. As a family our faith has increased. I know personally that my Savior lives. That miracles still happen today, that He loves us and that we can all have a personal relationship with Him. I will be eternally grateful to my mother for all she has and continues to go through.
I am going to try to keep up with this blog. I took it over from Allan because he doesn't even have time to eat yet alone keep up with something like this. I am going to go back in time for a few posts to try and catch everyone up. We have been MIA online now for quite sometime so I am going to try and represent for the SC crew! This is a picture of Allan's office at work. He bought a business called "The Postal Route" in January 2008. I have not seen him much since then. On a typical day he goes to work at 7am and gets home around 9 or 10pm. I even buy groceries for him and and stock them at his office because he is never home to eat. All of those papers and sticky notes and his "to do" lists. My immediate family knows that he is probably not going to make it to the party that day. Lucily, I have an awesome family that helps us out in so many ways. Craig works with Allan a few nights per week and Allan really appreciates the help. He is such a hard worker and is looked up to by the entire community. Everyone knows Allan. When we go to Walmart together random strangers (strangers to me) walk up to him and shake his hand. I am really proud of all of his hard work.
Tuesday, January 4, 2011
Here is my beautiful mommy in Washington. If you don't already know the story she has a brain tumor that is being treated at the NIH (National Institute of Health) in Bethesda Maryland. We go there about every 6 weeks for scans and orders for more treatments. Her treatments are adminstered here in Charlotte by an oncologist. This was one of our trips this past summer. I pushed her about 5 miles that day. It was so hot but we had fun. Currently her tumors are shrinking with the help of biweekly chemotherapy.