This is Danielle's story...
Danielle Rose was diagnosed with Stage 2 Wilm's Tumor (kidney cancer) when she was 2 years ...old in 2006. She went in for her regular 2 year check up, the doctor pushed on her tummy, found a nodule and she was checked into Children's Hospital of Pittsburgh the same evening. God knows what would have happened if we had not taken her for her regular 2 year check up. It doesn't get much more important!! That's when we first heard the term Wilm's Tumor and that kidney removal would be necessary. Of course, we questioned the doctors to make sure that the right course of action was being taken and they said that there was no other alternative as there was not much right kidney left. So she underwent surgery the next day having a right nephrectomy (kidney removal). She was only 2, so she really wasn't aware, but we were a mess. When they brought Danielle down, they let us go with her as far as we could and then they gave her a little sleeping agent to calm her down. She immediately went limp and started laughing as hard as she could. Even then, she was stronger than all of us. Our little Angel gave the rest of us what we needed to make it. It was a major surgery that kept her in the hospital for a little over a week. She was in pain and did not understand, but playing was much more important than being kept down!! They also started her Chemotherapy treatments while she was still in the hospital. Her Chemotherapy consisted of Vincristine and Dactinomycin. Needless to say, we had serious short term and long term concerns. Dr. Wolman (who is excellent, by the way) assured us that these would not harm her from a long term perspective, but he did let us know that it would make her not feel well and that she might lose her long, pretty hair. Small prices to pay for her health, but daunting just the same. She did lose her hair but she didn't care, again, making us feel a little better. She did have her difficulties with eating and feeling well, but all in all, she weathered it well. She was always much tougher than we were. She did really well for 2 years. Her hair grew back even prettier than it was before. She began to have flu symptoms in April of 2008. We called the Dr.'s office and they told us just to watch her and that the flu was going around. Later that day, she became considerably worse and ashen in color. When she arrived at Children's Hospital ER, she was in shock and had what appeared to be the entire ER staff working on her. Her tests found that she had an obstruction in her small intestine. They did emergency surgery to discover the reason for the blockage and to correct. After hours of major surgery, we were told that she was the victim of adhesions (scar tissue) and that they had killed half of her small intestine. One of the doctors described it as a devestating set back. She was 3 at the time so she was much more aware and scared of the procedures, but she did not give up. She went into intensive care for the first time. We were allowed to visit 24 hours but we had to stay awake, so we did shifts. Our priest came to visit the next day on short notice. Danielle's heart rate crashed while he was there and she needed some help to bring it back. Again, it seemed that the entire staff was working on her. Our priest looked horrified and I'm sure we did too. Scary stuff. She had alot of pain and she was older than the first time, so recovery was a more tentative and took a little longer. A little over a week and we took her home. Only a month later, she was there again, for the same reason. The hospital waited a couple days to see if the obstruction would "work itself out". After much concern, it did and she came home. Finally, a little relief from what seemed to be mounting pressure. The relief was short lived as we had to make the trip once again. This time, she was not so lucky. They gave her a day to see if it would work out, but it didn't. She had to undergo the same procedure again to remove 7 more inches of small intestine. She was a sick, swollen, tired little girl as she did not have much of a break between this operation and the last. She pushed through it though and she began the revovery. The recovery took a number of months since it did effect the way she eats and the way she processes what she eats. Being that she has less than half of her small intestine, it took time for her body to adjust. She also battled with weight. She was always a small kid, but this really had an effect on her weight. Since then, she has been going to regular check ups and has been doing well. She is now eight and has just been given another "All Clear". Danielle is winning her battle, but her fight isn't over. We watch her very closely and she still battles with weight/eating/digestive issues...All related to her Cancer and related Adhesion issues. She continues to fight...which will most likely be a long battle. She is now beginning to take the offensive though. She is now waging war against the larger battle for herself and other little kids against Childhood Cancer. Childhood Cancer is different and can't always be treated the same way as adult cancers. Most cancer groups only devote a small amount of funding against Childhood Cancer (Amercan Cancer Society 5.7% - Source: American Cancer Society) Obviously, this isn't enough. It is purely through research that Danielle's prognosis is as good as it is (over 90% survival). Only 15 short years ago, this same diagnosis would have only been 50%. Hope, strength and determination are key in the battle for survival, but they are not enough in and of themselves. Combined with cutting edge research/treatment, the fight against cancer will turn. It is our duty to her and to other little kids that are unfairly dealing with cancer to help get the word out about and support those with childhood cancer, adhesions and to help garner support for the organizations that have given us so much support. After long, extensive consideration and research, we are endorsing only one group, while we support many others. We've chosen this group because of their efficiency in getting funds to the research, development and children that so desperately need it. Please feel free to inspect their website to learn more about how they how they operate and the efficiency of funding. www.curesearch.org - This charity provides funding for Children's Oncology Group and others, encouraging and rewarding them for forward thought and treatment for treatments that can be brought to market quickly with less side effects than existing treatments today. The cure is out there and we're going to find it! We would humbly ask that you consider this worthy cause and make donations in Danielle's honor and in memory of those like her that have not been so fortunate. Her website is www.CureSearch.org/DaniellesRoses. Since Danielle's support began of CureSearch, she's been one of the top performers in the country...2011 - #3 in Pittsburgh and 2012 & 2013 - #1 in Pittsburgh! Danielle has been an inspiration to many! Because of this, we have founded her group, Danielle’s Roses Against Childhood Cancer. Danielle’s Roses will lead her larger battle against the diseases of Childhood Cancer. Danielle’s Roses strength will be you, her members. We ask you to continue to give people the opportunity of letting Danielle touch their hearts by helping to spread her message of hope, strength and determination. Please "Like" her site, share her page on your FB site asking your friends to "Like" it and ask them to do the same. Finally, we have love and appreciation for all of the family, friends (FB Community too!) and medical professionals that helped and supported Danielle when she needed it most. We love you. Danielle's Roses Against Childhood Cancer
