Thursday, March 26, 2009
Saturday, March 21, 2009
Tuesday, March 17, 2009
Tuesday, March 10, 2009
Friday, March 6, 2009
and why we've been neglecting our blog.
This is my Mom, AKA Grammy.
This is my Mom, AKA Grammy.
This photo must have been taken sometime in 1971. Sitting on her lap is my sister Renee, and I'm sure you can figure out who is next to her. ;)
Mom (or Grammy, depending on our mood!) has been with the Badelves from the beginning. We've lived together and experienced what life has thrown at us (good and bad) as a family. We bought our first home, grieved over the sudden death of my sister, rejoiced in the birth of Renee, relo'd to New York for Mark's career, relo'd to Georgia for Mark's career...you get the idea! I honestly believe that our strength as a whole is what has helped us through those situations. Not that we couldn't have lived (and survived!) them separately, but we did it as a family. Isn't that how life should really be anyway?
Recently, we got some frightening news regarding Mom that knocked the wind out of us. After some routine blood work, we received a phone call that she needed to get to the ER immediately. Words like 'extremely high white blood count' and 'leukemia' were being hurled at us from (what felt like) every corner. As Mom and I drove up to Emory in Atlanta, we tried to wrap our brains around what was happening. Mom is a retired nurse, but being on the receiving end of this kind of information is a lot different than giving it.
They took vial after vial of blood in the ER, and she was admitted that night. The weekend was filled with numerous tests, a blood transfusion, a bone marrow biopsy, and then she was released on Monday. I was very nervous , but I know they wouldn't have let her come home if she was that fragile. Mom, on the other hand, was thrilled to be home in her own bed!
A week later, we had an appointment at Emory’s Winship Cancer Institute to meet with the doctor who would be following her case. Her blood counts were much better, but the results of the biopsy weren’t complete. At that point they were leaning towards CML--Chronic Myelogenous Leukemia. They couldn’t tell us anymore than that, so we waited.
Then we went back the next week and waited some more...
Can I just say that I don't like waiting--especially when it comes to answers about someone I love?
Two weeks later, we finally got those answers. What Mom has is so rare that there really isn't much info out there about it. We were handed a printout that read 'Idiopathic Myelofibrosis', but yet we were told that she doesn't really have much fibrosis in her marrow. That's good news, but frustrating at the same time. I have a serious problem with researching and understanding things. Why can't it be more simple? Why did she have to be one of the two out of one million people that get such an uncommon disease? And with those odds, why can't she win the lottery? ;)
Yup. Attempting to add some humor to the seriousness of the situation.
The official name for what she has is 'Philadelphia Negative Myeloproliferative Disorder'. Get your mouth around that one! It isn't curable, but is treatable. I don't really know how I feel about the 'non-curable' thing. I guess I really wanted to hear that everything was fine and all of this was just a mistake. How unrealistic is that? ;)
They started her on oral chemo a few weeks ago and it has helped her WBC come back down, thank goodness. It looks as though she will have to remain on it indefinitely--her WBC seem to shoot back up when she's off the chemo. The key is to find the balance of the perfect dosage. The meds not only lower the white cells, but knock down all the others, too. If they aren't careful, she could end up on a roller coaster of highs and lows with blood transfusions thrown smack dab in the middle for extra thrills.
You know that I am joking about that, don't you?
To save us from the drive up to Atlanta every week, her doctor at Emory will be working hand in hand with another hematologist who is a little closer to home. Our first visit with him will be next Tuesday. We're keeping our fingers crossed that things go well. We've done our research and know that he is a great doctor, but we hope that he has a great bedside manner, too. That's so important with a family doctor, but even more so when you are living with a disease no one knows much about!
She will also continue to be monitored by Emory, and we are so happy that it is a teaching/research hospital. In her next batch of blood work, they will be looking for a particular mutation gene and an enzyme that is linked to it. They believe that this enzyme is what causes an overproduction of blood cells. They also believe that this particular enzyme could possibly be inhibited with treatment. If all of this wasn't happening to someone I love so much, it would be very, very interesting.
So that's what's been happening in the world of the Badelves. I know that none of you asked for all that information and you probably fell asleep right in the middle there. ;)
Either way, as time goes on, we hope to get back to our regularly scheduled blogging. Our days and weeks have calmed down a bit, but now we are playing some serious catch-up.
Oh. And could someone please inform Mother Nature to wait for me to get back into the swing of things before she sends Spring our way? There are only so many hours in a day! LOL!