I had a very bad experience with a cancer charity today and after being upset all day I decided the best way to deal with it was to vent here on my blog.
I think most, if not all, of you know I am a cancer fighter. I live in Sunny Florida but receive my treatments and follow ups at Dana Farber Cancer Institute. For the past two years I have flown up to Boston every three months for Surgery, PET Scans and other fun doctor appointments. For the first year the cost of these flights came out of my pocket (or my parents pockets). Then I was told, by a fellow fighter who lost her battle, that there were services for people battling cancer who needed to fly. And so I started using one of these organizations, Mercy Medical Airlift, and they were wonderful!
Because I fly so much I had to find another charity to help me with my flights and let others use the services of Mercy Medical (they are a small organization with limited funds). So began the very difficult search for help. To say it mildly it did not go well....
I was put in contact with a charity called Miracle Flights. This charity requires you send a photo of yourself before they will donate a flight. I have gone through several other charities for free flights to treatment centers and have never been asked for a photo of myself. To ask is one thing but these people REQUIRE it before they will consider giving you a flight for cancer treatment.
Having cancer is horrible. Telling friends and family that you have cancer is difficult. Letting current or future jobs know of your diagnosis is also unfair and at times humiliating...cancer becomes a part of your identity. If you need assistance to pay for services you are required to share all your very personal medical information, call many numbers, talk about your cancer and divulge extremely personal information just to get some assistance. I understand why this is and that its necessary but to take it a step further and also require I send you a photo of myself, thats one step too far.
What could be the purpose? Everyone knows you cannot get on a flight without a picture ID. All my medical information includes my full name and social security number. I know what they want my photo for....PROMOTION! Well to that I say "NO" I am not going to be exploited because I have cancer. You do not get a picture of a sick young woman who needs chemo/radiation and surgeries. It makes me sad that a charity that is suppose to be doing something good insists they have the right to require so much from the one in need. They feel its their right to know every personal detail about your battle with cancer and then put a photo of you in their file to complete their intrusion.
I would rather not get my treatment than to let an organization violate my privacy any more than it already has!
Help Spirit Jump Win 2009 Cancer Fighter Award
My life has been so busy and wonderful these past few months. After two long years filled with so many difficulties I am living a "normal" life. I can go fishing with my boyfriend, out to eat with my friends and make future plans. I am so grateful to be where I am today. This also creates some anxiety for me as I find myself feeling anxious and stressed that things could change in a moment. Cancer is a very scary disease to battle because it is never truly gone.
Some very exciting things are happening with my charity Spirit Jump. We are in the running for an amazing award. The winner is the charity with the most positive reviews. Right now we have 113 reviews but we could use more. AND...the cool part is, every person who reviewed the winning charity gets put in a drawing for a bunch of awesome prizes! So im asking my friends, followers and supports to PLEASE take a minute to write a quick review. It doesn't have to be much, a sentence works.
Fellow Fighter Ezra
This blog post was written by Ezra's mom. This little boy is has been a part of our Spirit Jump charity and we have all fallen in love with him. Please take a moment to read his story and put him in your prayers. Also, if you would like a button for your blog you can get on on his moms site: MANIC MOTHER
May 22nd, 2009 will forever be marked the day the world fell out from underneath us. That is the day that I heard cancer and baby used in the same sentence.
Let me back up though first for a moment. I am sure you are asking yourself how we found ourselves where we are.
Over the weekend Ezra had got bit by a spider and had a handful of bites on him, we were concerned they were venomous spider bites. He was also limping in the leg that the bites were. We took him in to see the Dr.s and they basically said just to monitor him. They ordered an x-ray for a precaution because of the limp.
Its those x-ray results that changed everything.
The radiologist noticed abnormal markings in his bones, which can be indicative of leukemia. They of course said it was just a precaution but we needed to see an oncology Dr. to follow up.
The oncology Dr. looked him over and did not see any of the typical tell tale signs of Leukemia. He told us not to worry and had Ezra’s blood drawn to rule Leukemia out.
Later that night we got a phone call and were told some of the lab results looked abnormal, and were told to bring him into ER. They did more labs there, and it was by far the worst night of my life ever.
Results came in, and although they were still waiting on one more result to officially diagnose Ezra, they told us then that they thought he had Leukemia.
We sat there in our curtain enclosed area in the ER weeping, holding our sweet little boy. So many questions swirling in our heads. Why him? Am I to blame? Could it have been prevented? Is he going to die? What next?
The next morning an oncology Dr. came in and gave us the official news and told us Ezra had Acute Lymphoblastic Leukemia (ALL). Some of his first words to us were “ He is going to be fine, he is going to go on to graduate college, be a father, and a grandfather.” In my darker hours, I find myself revisiting those words often. I cherish those words. I need those words. Those words keep me afloat, they give me hope, peace, and reason.
It still doesn’t make any sense to me, how did my perfectly healthy baby go from a limp to Leukemia? Ezra did not present any of the typical symptoms of Leukemia, besides being pale. But if you have seen me or my other son, the paleness is no cause for alarm.
The reason Ezra was not yet exhibiting symptoms of ALL was because it was still really early. Typically when kids are diagnosed with ALL they have any where from 60-90% cancer cells (or blasts as they call them) present . The disease does not usually present itself till 25% blasts are found. Ezra’s were at 15% at diagnosis.
We caught his cancer on a complete fluke, and we caught it really early. Sometimes fate has a beautiful way of interceding, thank you Mr. Spider. So Ezra spent his 2nd birthday in the hospital receiving chemo.
His bone marrow was tested a week into the chemo to see how he was responding. They only found 1-2% cancer blasts left. This labels Ezra as a rapid early responder, which is highly favorable. He will be tested again at day 28, were they expect to find his cancer has gone into remission.
Ezra will receive three years of chemotherapy treatment. Most children recover completely from this cancer, and go on to live a normal cancer free life.
Prior to Ezra’s diagnosis my husband and I always talked about how there was something special to Ezra. There is a light in Ezra , that not every child encompasses. His light is infectious and can put a person at ease, make them laugh, or make them cry. He is a sweet old soul, who is knowledgeable beyond his years. He is a fighter.
He will make it through all of this just fine. He has been braver than I can ever imagine myself being.
He is my hero.
Its Been a While But I need to VENT
First I have to apologize for not writing very much lately. I looked back and noticed that soon after I had my rib & kidney removed my posts dwindled off. While I feel bad I also feel a huge sense or relief. I think my lack of posts demonstrates my huge strides in both physical and mental health.
Things have gotten so much better for me. Sitting here writing I have tears in my eyes thinking of all the painful years I spent battling my beast. The sleepless nights, the tortured days....I was never truly honest with those who loved me about how difficult my battle with cancer was. But now I can honestly say I am starting to see the light at the end of the tunnel. At night I do what most people do, sleep. When I go to the bathroom I am not pulling my hair out because the pain is so bad. I'm not secretly throwing up in the bathroom because my stomach hurts so badly. And I am no longer ashamed that I can't remember something that happened just moments before.
Yes I am still scared that a PET scan will come back with bad news. I still dread my doctor visits and the possibility I will hear the the cancer is coming back. Im also aware that until my 5 years (3 years from now) I am not cancer free, not a true survivor. But for now I am so much healthier than I ever imagined I would be.
While my health is doing better I have had some difficult battles these past few weeks. As many of you know I started a non profit organization called Spirit Jump. I did this because when I was fighting my battle cards & gifts that arrived in the mail truly lifted my spirits. I wanted to share this experience with the others out there who, like me, are faced with battling cancer. At first Spirit Jump was immensely rewarding and I knew I was doing the right thing. It wasn't easy for me to put aside my lawyer career but I felt that I needed to give back to all those who were still in the darkest place I have ever been in my life. Leaving them behind, shutting my eyes to their battle just wasn't an option.
However, there have also been some negative aspects to my charity work. Because of the success of Spirit Jump our numbers have grown and others have been taking advantage of my kindness & sincerity. This charity is so important to me as it is about what I went through and how my spirits were lifted when I was sick. Unfortunately I think this makes me an easy target. I am learning how to be stronger and more of a "business woman". I am an intelligent, professional and good honest woman. I surround myself with good honest people who want to see me and my vision for Spirit Jump succeed. Spirit Jump is now a real organization and not just a dream. We are a team made of Professionals, Marketing Technology, Nonprofit advisers, Attorneys and Business owners. Those who make up Spirit Jump protect me by stepping in to deal with people/situations that are merely political and do not advance our mission in anyway. I have been extremely disappointed and hurt by those who do not trust that I am handling many difficult situations with the utmost care and integrity.
I am angry and hurt that I am working 12 hours a day 7 days a week and still it is not enough for many. I am angry that I have been attacked as a person by people who are not interested in helping people with cancer. These people want fame & attention and have used me as a way to achieve this. BUT I will not let them bring me or Spirit Jump down. I will rise above this and continue to help the MANY men, women and children who are battling for their lives.
I thank you all to my friends & followers who have supported me and loved me through my battle. I hope you continue to do so and I promise I will be updating this blog more often.
Jewelery Giveaway To Help Lift Spirits Of Cancer Fighters
THIS WEEK'S DONATION GIVEAWAY IS GOING TO BE A BIG ONE. OUR THEME.. ....JEWELERY!
SPIRIT JUMP IS A SMALL CHARITY RUN BY TWO YOUNG WOMEN BATTLING CANCER. AS WE HAVE NO SPONSORS, ALL OF OUR COSTS ARE PAID FOR DIRECTLY FROM DONATIONS. IN AN EFFORT TO RAISE FUNDS TO SUSTAIN SPIRIT JUMP WE HAVE DECIDED TO HOST A FUNDRAISING DONATION GIVEAWAY.
The first prize (Pictured Above) was donated by Ginny over at CISZEK DESIGNS. With a value of $85.00 this necklace is made of Chinese Turquoise Antique "Olive" Trade Beads with Silver & Czech Glass all on beautiful Hand Knotted Silk.
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The Second & Third Prizes were donated by Megan (former High School classmate of Founder Meaghan). Both pairs of earrings were hand made and have a retail value of $10.00 per pair.
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Prizes Four & Five were donated by Erin over at FLAIR. These beautiful pendants have a retail value of $20.00 each. Both pendants are hand made and one-of-a-kind. Erin tells us "Think of them as little mirrors reflecting your own unique style."Our Sixth Prize was also donated by FLAIR and is pictured below. One-of-a-kind and handmade this belt buckle is sure to show off your FLAIR. With a retail value of $50.00 the Buckle comes attached to a black genuine leather belt.
For each donation of $2 you will receive 1 entry for this week's drawing. There is no limit to the number of entries you can receive. This weeks Giveaway starts Sunday July 5 @ 12:01 am EDT and ends Saturday July 11 @ 11:59 pm EDT. We will draw 6 winner's for this week's giveaway.
Spirit Jump Giveaway Official Rules:
No purchase necessary. For each donation of $2.00 made to Spirit Jump, donor will be assigned one(1) ticket for this week's raffle. If you do not choose to donate but would like a raffle ticket at no charge, send an email with your complete name, address and telephone number to spiritjumpraffle@aol.com. All donations or email entries must be received by 11:59 pm EDT on Saturday July 11, 2009. Winner will be selected among all donations/email entries received in a random drawing. Descriptions of prizes listed above. Approximate retail value of Czech Necklace $85.00, Earrings $10 each, Pendant Necklaces $20.00 each, Belt Buckle $50.00 All prizes will be awarded. Void where prohibited. Sponsor: Spirit Jump www.spiritjump.org
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