On September 11, 2001, Nicole came home from school complaining of a pain in her neck and shoulder while raising her arm. After feeling her neck, and finding a rather large lump, we immediately called her pediatrician. Unfortunately, by the next morning we had the news. Nicole was diagnosed with Cancer of the lymph system or Lymphoma. There were two tumors, one in her neck and the second, in her chest. The one in her chest was 41/2 inches in diameter and had engulfed the blood vessels of her heart, causing swelling around her heart. In immediate danger of cardiac arrest, Nicole was sent to surgery to drain the fluid from around her heart and to do a biopsy to confirm the diagnosis. The biopsy confirmed that the lymphoma was Hodgkin’s Lymphoma. Hodgkin’s, we were assured, was treatable. She was said to be "lucky"; being told repeatedly that "If you have to have Cancer, this is the one to have" (Hodgkin’s is said to have a 90-95% cure rate). The treatment protocol was to last 6 months. In fact the chemotherapy/radiation regimen did take effect very quickly. The tumors began to shrink within a few weeks, alleviating any immediate concerns regarding her heart. As previously predicted, at the end of the 6-month treatment protocol, Nicole was declared, "cured" by her physician. Life shortly began to return to normal for Nicole. Regrettably, Nicole’s return to normalcy was short lived. The Cancer returned in only a few short months. The recurrence appeared in her chest once again, and a spot on her lung was now evident. At this point, Nicole began treatment at Memorial Sloan Kettering Cancer Center in NY, with Dr. Tanya Trippett. Under Dr. Trippett’s treatment, Nicole was able to achieve remission with heavy doses of Chemotherapy and radiation; eventually undergoing a Peripheral Autologous Stem Cell Transplant (An Autologous Stem Cell Transplant is a process to extract one’s own stem cells while in remission, storing them, and then receiving massive amounts of chemotherapy. Doctors then reintroduced the Stem Cells to “re-seed” one’s immune system and thwart the deadly effects of the drugs). During the month long hospitalization Nicole became septic and almost succumbed to the effects of the chemotherapy, if not for the expertise of the Doctors and Nurses. Nicole enjoyed a complete remission for a few months. We truly expected the nightmare to be over. Unfortunately, the spot in her lung reappeared once again in March 2003. After extremely rare surgery (lymphomas do not usually present a surgical option) to remove the tumor from her lung, Nicole began a chemotherapy regimen that did not exist only a few short years ago. We have been told that prior to the use of this chemotherapy for refractory recurrent Hodgkin’s disease, patients that failed transplant were merely sent home to die. The good news is that the surgery was a success, and Nicole was once again in remission. The bad news was that the chemotherapy, although not as toxic as most, was extremely debilitating to her newly implanted immature immune system. Nicole was almost continually neutropenic (Her body could not produce enough white cells to fight infection). Here again, on multiple occasions, Nicole was nearly lost due to the effects of Chemotherapy. The Dr. had told us that Nicole would require a Mini-Allo Transplant (transplanting a donors immune system) so her body could fight the Cancer on its own. The Dr. informed us that unless or until a donor could be found, Nicole would continue chemotherapy until at least March of 2005. A donor was never found, and given Nicole's continued remission, the Dr. decided to discontinue chemotherapy in December 2004 rather than wait until March of 2005. An overriding factor in the Dr.'s decision was the fact that Nicole's bone marrow had become tired, nearing exhaustion. It did not bounce back as well as it had before, after each treatment cycle. This was due to accumulated effect of all the chemotherapy she had received. Weighing this against her overall good condition made the decision easier for all of us. Thankfully, Nicole has remained in remission since the surgery of 2003, and more importantly, after discontinuation of treatment in December of 2004. She continues to undergo tests every three – four months in order to detect any possible recurrence. However, Nicole fully understands that the risk for relapse remains extraordinarily high. We continue to search for a match in order to maintain a bone marrow treatment option in the event of a recurrence of the disease or the development of any secondary cancers.
On September 11, 2001, Nicole came home from school complaining of a pain in her neck and shoulder while raising her arm. After feeling her neck, and finding a rather large lump, we immediately called her pediatrician. Unfortunately, by the next morning we had the news. Nicole was diagnosed with Cancer of the lymph system or Lymphoma. There were two tumors, one in her neck and the second, in her chest. The one in her chest was 41/2 inches in diameter and had engulfed the blood vessels of her heart, causing swelling around her heart. In immediate danger of cardiac arrest, Nicole was sent to surgery to drain the fluid from around her heart and to do a biopsy to confirm the diagnosis.
The biopsy confirmed that the lymphoma was Hodgkin’s Lymphoma. Hodgkin’s, we were assured, was treatable. She was said to be "lucky"; being told repeatedly that "If you have to have Cancer, this is the one to have" (Hodgkin’s is said to have a 90-95% cure rate). The treatment protocol was to last 6 months. In fact the chemotherapy/radiation regimen did take effect very quickly. The tumors began to shrink within a few weeks, alleviating any immediate concerns regarding her heart. As previously predicted, at the end of the 6-month treatment protocol, Nicole was declared, "cured" by her physician. Life shortly began to return to normal for Nicole.
Regrettably, Nicole’s return to normalcy was short lived. The Cancer returned in only a few short months. The recurrence appeared in her chest once again, and a spot on her lung was now evident. At this point, Nicole began treatment at Memorial Sloan Kettering Cancer Center in NY, with Dr. Tanya Trippett. Under Dr. Trippett’s treatment, Nicole was able to achieve remission with heavy doses of Chemotherapy and radiation; eventually undergoing a Peripheral Autologous Stem Cell Transplant (An Autologous Stem Cell Transplant is a process to extract one’s own stem cells while in remission, storing them, and then receiving massive amounts of chemotherapy. Doctors then reintroduced the Stem Cells to “re-seed” one’s immune system and thwart the deadly effects of the drugs). During the month long hospitalization Nicole became septic and almost succumbed to the effects of the chemotherapy, if not for the expertise of the Doctors and Nurses. Nicole enjoyed a complete remission for a few months. We truly expected the nightmare to be over. Unfortunately, the spot in her lung reappeared once again in March 2003. After extremely rare surgery (lymphomas do not usually present a surgical option) to remove the tumor from her lung, Nicole began a chemotherapy regimen that did not exist only a few short years ago. We have been told that prior to the use of this chemotherapy for refractory recurrent Hodgkin’s disease, patients that failed transplant were merely sent home to die.
The good news is that the surgery was a success, and Nicole was once again in remission. The bad news was that the chemotherapy, although not as toxic as most, was extremely debilitating to her newly implanted immature immune system.
Nicole was almost continually neutropenic (Her body could not produce enough white cells to fight infection). Here again, on multiple occasions, Nicole was nearly lost due to the effects of Chemotherapy.
The Dr. had told us that Nicole would require a Mini-Allo Transplant (transplanting a donors immune system) so her body could fight the Cancer on its own. The Dr. informed us that unless or until a donor could be found, Nicole would continue chemotherapy until at least March of 2005. A donor was never found, and given Nicole's continued remission, the Dr. decided to discontinue chemotherapy in December 2004 rather than wait until March of 2005. An overriding factor in the Dr.'s decision was the fact that Nicole's bone marrow had become tired, nearing exhaustion. It did not bounce back as well as it had before, after each treatment cycle. This was due to accumulated effect of all the chemotherapy she had received. Weighing this against her overall good condition made the decision easier for all of us.
Thankfully, Nicole has remained in remission since the surgery of 2003, and more importantly, after discontinuation of treatment in December of 2004. She continues to undergo tests every three – four months in order to detect any possible recurrence. However, Nicole fully understands that the risk for relapse remains extraordinarily high.
We continue to search for a match in order to maintain a bone marrow treatment option in the event of a recurrence of the disease or the development of any secondary cancers.
