Philly Positive

Ok-so now I am going to back track a bit and bring you back to where we left off after 4NT. I mentioned earlier that Vanessa would need to find out if she tested positive for the Philadelphia chromosome. She did, in fact, test positive. Unfortunately, this was not a good diagnosis. If she had tested negative for the PH chrom. she most likely would not have had to have a stem cell transplant. I'm sure many of you don't even know what makes the PH chrom. , let alone what it is. In simple terms it is when a person's DNA #9 and #22 split and then join each other.

After we found out this sad information the next hill to climb was to find out if I was Vanessa's match for the stem cell transplant. Being her only sibling I would have a 25% chance of being a match. Anyone else is about 1:1,000,000,00. If I was her match this would speed up the process of the actual transplant. She would undergo the transplant late Dec. early Jan. If I was not her match then because of the typing and consent of a non-related donor it would be set back to late Jan. early Feb. Sadly, we found out that I was not her match. I took this VERY hard! Luckily, she is a blonde haired, blue eyed, Caucasian female, so her chances of finding a non-related donor are very high. Her doctors have already told her they have found matches, and now they are doing all the nitty gritty work to see if and when the unrelated donor would be able help. This whole process can take up to six weeks.

It was very humbling to see how many of mine and Vanessa's friend reached out after they heard that I was not her match. Dozens of people ordered the "kit" to become part of the bone marrow registry in hopes of being a match for Vanessa. If any of you who read this would like to get on the registry to possibly help someone someday you can go to http://marrow.org/Home.aspx to find out further info. You could save someone's life! :)

Here is a medical definition of the PH chromosome:
Philadelphia chromosome (Ph): An abnormality of chromosome 22 in which part of chromosome 9 is transferred to it.

http://www.cancer.gov/PublishedContent/MediaLinks/380277.html

Heartache...

Today my heart aches especially hard. After coming off of a family filled weekend and my birthday, I am now feeling a sense of sadness and guilt. Don't get me wrong I had a wonderful time, but there was just one piece missing. People say be happy, have fun it's your birthday! Yet, they don't understand that all I want for my birthday is healthy, normal sister. It's hard to be happy and let loose because that dreaded monkey is always on my shoulder. Tap! Tap! Tap!

 It's not fair that Vanessa didn't get to join in with me and my parents at my birthday dinner. It's not fair she didn't get to go shopping with me and my mom over the weekend. Why should we all get to have "fun" while Vanessa lies in her hospital bed, surrounded by sterile concrete walls, and the view of the cold November skies, while poison (that is supposed to be helping her) is being pumped into her? She doesn't deserve this, no one deserves the sentence she was given.

The feelings inside me are unexplainable. It's rage, it's sadness, it's hope all mixed into one ball that is lumped inside me. Currently, I am listening to solo piano radio on Pandora and it feels like a roller coaster ride. The ups and downs, the build up, the release, and the coasting yet it gives me a sense of calmness as tears roll down my face. I say everyday still, this should be me; I want to take it all in and away from her.

I ordered a book called "It's Good to Know a Miracle: Dani's Story: One Family's Struggle with Leukemia" as well today. For as much as I have read over and over, I think it's time that I read something that isn't based off of stats. I think it's unfair to compare Vanessa to other cancer patients because she is her own living self that God has His own individual plan for. What do some other persons stats have to do with her? Then I catch myself saying, "Hell, someone has to be that percentage that makes it through this war zone." Not for a second would I wish the emotions that go with what my family and I are feeling upon anyone!

As I close out today I will leave you with a piece that I feel is very fitting:

Philip Glass

Metamorphosis

Happy Thanksgiving

Going a little out of order today, but since it is Thanksgiving I will write about that today. Today marks the first major holiday that we are celebrating with out Paul's mom since she has passed. I'm sure today will be hard for Paul at times. Today also marks the first major holiday with Vanessa fighting her fight.

We are celebrating at Vanessa's new house with just the 6 of us. Vanessa's choice! :) My mom I'm sure has prepared a 100% organic feast for us. I couldn't be more grateful for the family that I have! I'm not really in the writing mood today, so this one will be short and sweet. Happy Thanksgiving!

Thank you Sir may I have another?

So here my husband and I are, again, in the 4NT wing of Froedert. The rush of emotions hit him pretty hard since this place all too familiar to him. Vanessa was assigned to room 5. It was late in the day when we all got there. I was running on minutes of sleep, yet I wasn't fazed by it. When we walked in the room Vanessa was sitting on the middle of her "new bed", arms clutched around her knees, a half crooked smile because we were there, and a look on her face that made me want to crawl inside of her and take that nasty cancer by the balls. This was all really happening, and being the control freak that I am, I couldn't do a damn thing about it. None of my herbal remedies would work this time, nor would lots of sleep, nor would the sweet, soft, caring, loving words of our mother.

I had packed a small bag full of sentimental things that belonged to me to leave in her room because let's be honest, this wasn't the Ritz Carlton. We weren't there for long until I started putting up the pictures and knick knacks I brought for her. First was a picture of me and her on the last Caribbean vacation that we were on together. Feb. of 2006 to be exact. Vieques, Puerto Rico.  Then there was the picture of me and Paul from our wedding "shower". The book Guess How Much I Love You?. Lastly, a family picture of the four of us from my wedding rehearsal dinner. They brightened up the room a bit.

Later that afternoon her main doctor came in and gave us the down low on what Vanessa had and what she was going to face.  We learned that Vanessa was diagnosed with Acute Lymphoblastic Leukemia-ALL. This is the type that normally, what's normal anymore though, right, that adolescents get. It is considered a curable cancer.  There was only one piece of the puzzle that we didn't have yet, and that was if she had the Philadelphia Chromosome. This little asshole would determine if she needed a stem cell transplant. She obviously would need chemo too.

Funny how being the holistic person that I am, and swearing off chemo is what I always did,  I didn't think twice about the word chemo when it came to Vanessa. Do I wish there was something else that was out there that didn't pose to harm her while doing good, yes I do, but this was baby sister, a product of two people that made me too.

1 month and 8 days....

It's been one month and eight days since we heard the disgusting word "malignant".  Even knowing what the word meant I had to confirm with my mother that it meant cancer. October 13, 2012 will be forever etched in my brain. It was a gloomy, drizzly Saturday. After hearing the doctor say it as a matter of factually, a fit of sadness and rage filled within me. I couldn't believe this was all happening, AGAIN! My only sister, my little sister, who is only 25, was given the sentence of Leukemia. I had lost my mother-in-law to Acute Myeloid Leukemia 3 months prior. As I looked out the doctor's office window, I saw my father-in-law's car in the staff parking lot of the hospital, and all I could think was to run down to him because he would know how I was feeling. The emotions that rush through a person when they hear what we heard is unthinkable. "It should be me..I've polluted my body way more than her through my years!" I kept saying out loud.

My brave sister just sat there, taking in all the doctor had to say. Me on other hand, was cursing cancer quietly under my breath. My mom and dad cried quietly, and my brother-in-law sat next to my sister stone faced. "This is fucking stupid!", I kept saying to myself. FUCK CANCER! The doctor told us this wasn't going to be a sprint, but a marathon. Being a veteran marathon runner I thought to myself, do you know how hard a fucking marathon is, pal?!

After the doctor told us that Vanessa would be moved to Froedert Memorial Hospital, and further testing would go on there to determine the type of Leukemia she had, we all quietly got up out of our seats and left. In the abandoned looking waiting area, which would be populated with various patients any other week day, the five us just held each other and cried. I remember feeling that all I wanted to was run, run until my body said stop.

After leaving the hospital we gathered at my sister's house to try to begin to wrap our heads around the blow that was just given to us. Personally, I felt like my sister was given a death sentence. Leukemia in my mind eats people up and spits them out. I don't want her die! She is my little sister! She is starting her life journey! For Christ's sake she was only married two years ago, she and her husband had just closed on their first house together a month prior to October 13th, and she started a great job 6 months ago. Why was God doing this to us?

Vanessa had received many floral arrangements from her short stay at KMH. I knew from my mother-in-law's bout with this stupid disease that flowers were no good. I immediately told everyone get these flowers out of her house, they are bad for her! Live plants and flowers have bacteria, and not knowing exactly where Vanessa's blood counts were scared me. So my mom and I packed up the flowers and plants in my car and drove them to my house. Once my mom and I unloaded all the flowers and plants I told her to take my car back to Vanessa's without me. I needed to run this out. And so I ran, I ran has hard and as fast as I could for the 4.5-5 miles it was from my house to hers. This marathon was only beginning.....