Her Story
. Allow me to introduce myself, my name is Danielle Enberg and I am a childhood cancer survivor. I was diagnosed with wilms tumor just 12 days before my first birthday. Most kids that are diagnosed with Wilm’s Tumor have symptoms such as abdominal pain, and blood in their urine, none of which I had. So how did they find my cancer? I had an ear infection that just wouldn’t go away. After a couple of weeks the doctors noticed that my liver was enlarged and told my mom to bring me straight to Mercy hospital, and to pack a bag. There the doctors first thought that I had liver cancer, then with further testing found that it was Nephroblastoma or Wilm’s Tumor. Now I know you’re wondering, what is wilms tumor? Wilms Tumor is a very rare and aggressive form of kidney cancer most often found in children under the age of five. There are five stages of wilms tumor
Stage I: is when the tumor is only in the kidney, and was removed completely by surgery. The cancer has not grown into blood vessels next to the kidney. The tissue layer (the capsule) that surrounds the cancer was not broken during surgery. About 40% of all Wilms tumors are stage I.
Stage II: The cancer grew beyond the kidney, but was completely removed surgically without any apparent cancer left behind. About 20% of all Wilm's tumors are stage II.
Stage III: This stage refers to Wilms tumors that have not been completely removed. The cancer remaining after surgery is limited to the abdomen. About 20% of all Wilm's tumors are stage III.
Stage IV: The cancer has spread through the bloodstream to other organs far away from the kidneys, such as the lungs, liver, or bone, or to lymph nodes. About 10% of all Wilm's tumors are stage IV.
Stage V: Tumors are in both kidneys at the time of diagnosis. About 5% of all Wilm's tumors are stage V.
I was diagnosed with stage V wilm's tumor. At the time of diagnosis, I had a large grapefruit size tumor on my right kidney and 7-8 smaller tumors on my left kidney and was given a less then 3% chance of survival. They immediately removed my right kidney with surgery, and waited to see if chemotherapy would shrink the tumors on my left kidney. After being in renal failure for one month, and the chemo not working as planned, they removed my left kidney as well. This meant that I would have to have a kidney transplant to survive.
I was then placed on peritoneal dialysis, Peritoneal dialysis is a way to remove waste products from your blood when your kidneys can no longer do the job. During peritoneal dialysis, blood vessels in your abdominal lining (peritoneum) fill in for your kidneys, with the help of a fluid (dialysate) which is washed in and out of the peritoneal space. This didn’t work for me, because it ended up giving me peritonitis and almost killing me. The doctors then placed me on hemodialysis. I had to have my blood run through my body, because with no kidneys to flush my system, toxins and chemicals would build to deadly levels. I had dialysis done three days a week. Between those days, my parents had to very closely monitor my liquid intake or I would have drowned myself internally. They also had to make sure that I followed a very strict diet that would test the will power of any adult. As a child my diet was much stricter, because I still had a lot of growing to do. Before my treatment, doctors use to let children eat what they wanted, but they never grew to be any bigger than a child, because the doctors found that too much phosphorous didn’t allow for calcium to reach their bones. I could only have nine grapes in a week, because fruit and vegetables are loaded with phosphorous. My potassium intake also had to be watched very carefully, or an overdose could stop my heart. But I could eat all of the candy and jelly beans that I wanted to, as long as it didn’t have any chocolate or nuts in it.
At the same time as dialysis, I was also undergoing intense chemotherapy and radiation treatments. And although those treatments saved my life, they also left some lasting scars. These are what doctors call late effects. They are symptoms that can show up months or even years after treatments are finished. Even though the doctors tried to protect my spine with a steel rod, the radiation gave me a mild case of scoliosis. And the chemo therapy has weakened my heart, and has given me some issues with tachycardia or fast heart rate. Neither of these issues surfaced until years after I was in remission. I was diagnosed with scoliosis my sophomore year of high school, and the tachycardia my freshmen year of college.
At the age of three I suddenly couldn’t keep any type of food or liquid down. Just the sight of a picture of food made me start to throw up. The doctors ran test after test and had no reason for this to be happening to me. I had to be kept alive by an I.V. for six months. The doctors then decided to perform an exploratory surgery to find the source of the problem. When they went in, they found that 18 inches of my colon had basically died and was no longer working properly. So the doctors removed those 18 inches of my colon. After that I started eating anything and everything they would let me eat.
Later that year they were ready to declare me cancer free. But in order for me to get my kidney transplant I had to be declared cancer free for one year. Because you have a much higher rate of the cancer returning in the first year, and they don’t want to put a new organ into a body that could attack it all over again. The doctors wanted to give me one last dose of chemo before they let me go my one year. But there was a catch, the doctors didn’t know how much to give me. At that time I was the youngest case in the US and Canada that had little to no kidney function before transplant. So the doctors gave me my normal dose of chemo, because it never really made me that sick before. Well they now know that the dose that they gave me is too much. The chemo gave me toxicity poisoning, and I was basically a burn victim from the inside out. I was burned all the way down my throat, into the lining of my stomach, and my internal organs. The doctors told my parents that I only had 48 hours to live. And although it almost killed me, my oncologist said it also saved my life, because no cancer cells could have lived through that. Although the doctors had a lot to do with my recovery, I had a much higher power on my side. Even my oncologist said that God had something big planned for me, and that’s why he kept me around. I truly believe that running for Miss Global United and telling my story to others is the journey he had in mind for me.
On September 23, 1993 I received my kidney transplant from my father. When they do transplants they usually open the donor first, and then the recipient. But my oncologist begged the surgeon to open me first and make sure that all of the cancer was gone, because he couldn't believe that I was truly cancer free. But I shocked them all once again and received a brand new kidney. Although I lead a pretty normal life, I have more challenges than the average 27 year old. Because I have a kidney transplant, I have to take immuno-suppressants to keep my immune system very low. This means that I get sick very easily, and get hospitalized for simple things like the flu. I was even in Isolation for a week when I had the chicken pox, because they could have killed me. I also want to stress how no two cancer cases are alike. I was a rare case in the fact that I was diagnosed with stage 5 Wilm’s Tumor, I also was a rare case, in the fact that my cancer was in my genes and I will pass it on to my children and grandchildren. Also because I have a transplant, I have to have monthly labs drawn to make sure that my kidney is not rejecting.
After my December (2011) labs were drawn, the doctors noticed that my creatnine was too high, and needed me to come down to have a biopsy performed on my kidney. On January 27, 2012 I had a kidney biopsy done, and found that my kidney tested positive for donor specific anti-bodies, and was starting the process of rejection. The doctors immediately started me on apheresis and IVIG to try and get rid of the anti-bodies that were rejecting my kidney. I had to have a catheter placed into my chest in order to have the treatments done. I had to have five treatments done every other day for 10 days. On February 23, 2012 I had another biopsy done, and found out that my kidney has stopped rejecting for the time being. The anti-bodies will eventually come back, but these treatments will help prolong the need of a new transplant for about 10 more years. Because of this, I have also been able to have my catheter removed from my chest. The doctors have also discovered that I have chronic Anemia, and iron deficiency. To help control this I also had three iron infusions done, and have anemia shots, in my abdomen, every month. Thanks to the Doctors at the University of Minnesota I am able to carry on with my normal life until it is time for my next kidney transplant.
In April 2014, my world was once again turned upside down. I had been feeling ill for a couple of weeks, so the U did some blood tests, and found out I had Mononucleosis (mono). Mono can be extremely dangerous for an organ transplant recipient like me, so I was put on a very strict "bed rest" like restriction. After about a week, I was having pain in the upper right quadrant of my abdomen. I called the U, and they told me to go to my local ER and get checked. While I was at my local ER, they did a CT scan and found a mass on my liver. I was immediately sent to the U to find out what the mass was. They ran a lot of tests, and did a lot of scans to make sure they knew what it was. Luckily it was a benign tumor called an adanoma. From what the doctors could tell, it was about the size of a softball, and looked like it could be easily removed. Well when I was in surgery, they found a tumor much larger than they had planned for. My adanoma was the size of a football, and took up the whole right side of my abdomen. So instead of removing about 30% of my liver, they had to remove 65% of my liver, my gallbladder, and unfortunately my kidney transplant. This had to happen, because the adanoma was attached to all of those organs, and would not peel off of them like most adanomas do. So they immediately placed a dialysis catheter in my neck to start me on 24 hour dialysis. I was in the ICU for three days. After that they placed a more permanent dialysis catheter in my chest. I am currently on dialysis three times a week for 3 1/2 hrs each day. And I will remain on dialysis until my next transplant. I am not able to have another transplant until my mono is gone, because if you receive a transplant while you have mono, you will end up developing lymphoma.
In November of 2014 I took a tumble down the stairs while I was going to my room in the basement. Because I was so thin from dialysis, I ended up rupturing a lymph node open under my arm, and it caused a leak in my chest cavity. I was in the hospital from November 21, 2014- January 31, 2015. While in the hospital, I had to have two chest tubes placed in my back, and side to constantly keep removing fluid from my body. Because the fluid was fat based, I was on a diet of jello and ice chips for the majority of my hospital stay. I was also having a hard time with keeping my IV open in my arm. So to help save my veins in my arms, the doctors decided to place a port in my chest. The kind of port they put in is called a power port. Now whenever they need to place an IV to administer medications, or draw blood for labs, they just simply access my port that is in my left chest wall. But my troubles didn't stop there.
In March of 2015, I started acting very strange, and my family was getting very concerned. My mom took me to my local ER, and I was rushed by ambulance to the University of Minnesota Health Hospital. I was placed in the ICU with a blood pressure of 220/140 (120/80 or lower is normal). I was acting quite delusional, and couldn't seem to settle down. My mom thought I was finally settling down to sleep, but I ended up having a seizure instead. This ended up giving me PRES Syndrome in my brain. I still suffer with short term memory issues from that seizure, but my doctors expect that to get better with time.
On December 23, 2015 I had a new dialysis access, called a graft, placed in my left upper arm. This new access allows me to get better, and cleaner dialysis runs. It also allows me to have my catheter in my chest pulled. But once again this new step didn't come easily. During my one week check-up (post-op) from having my graft placed, an ultrasound showed that there was no blood flow going on. So on January 1, 2016 I had emergency surgery to open my graft up to allow blood flow. The surgeon removed two blood clots from my line to restore blood flow.
In May of 2016, I had an infusion of a chemo medication called rotuxim. My infectious disease Dr. decided that this was the only plan of action that I had left to try and get rid of my mono, since I have had it for almost three years. After the infusion was complete, I had to wait three months to see if it was successful. In September of 2016, I finally received the news that my mono was 100% GONE!!! That meant that I was finally able to be moved to the active waiting list, and receive a kidney.
I was searching for a donor, and started to not feel very well. I just figured that it was winter time, and that I picked up a slight cold. I ended up going to the ER at the U of MN, because of an ongoing rapid heart rate at dialysis. While I was there they ran an EBV (Mono) level, because my infectious Dr had ordered to have one done monthly. Two days later I received a phone call confirming that my mono had returned. I was crushed, and pissed off all in one. I contacted my Dr, and she immediately ordered TWO more chemo infusions for me. I received those infusions in February of 2017.
In May of 2017 I was once again mono free. Ever since then we have been on a "fast track" to get me a transplant. In November of 2017 I received the word that my mom was a match!!
On January 4th, 2018 my mom gave the gift of life for a second time, by giving me a new kidney! My kidney is functioning great, and I am able to lead the "normal" life of the average 28 year old.
In March of 2018 I started to experience severe abdominal pain after eating. After making several trips to the ER, they discovered that I had a small bowel obstruction. They thought that it was located at the old surgery site from when I was three years old. They immediately placed my on a bowel hold (No food, or liquids), and also placed an NG tube in my nose to suction out fluid that had built up in my stomach. They also had to use it to administer my medications, because I couldn't take in anything by mouth. Now I have been through a lot in my life, but nothing has ever been as painful as this obstruction was. Since I was in so much pain, they scheduled me for surgery. But thanks to answered prayers, my system started to open up on its own and I didn't have to have surgery after all. They also got to pull the NG tube out of my nose.
After this happened, I had to make a VERY difficult decision. That was to have a full hysterectomy at the age of 29. This was for several different reasons, because of a cancer history (both mine, and family), and not being able to carry a pregnancy due to my transplant. Shortly after making this decision, I had yet another small bowel obstruction, less than nine after the first one. So once again an NG tube was placed, and a bowel hold was done. Now this could happen again, but at least I know what it feels like so we can hopefully catch it earlier if it does ever happen again.
on January 18, 2019 I had my full hysterectomy. And that is when the surgeons found out why I was having bowel obstructions. After carefully moving my kidney out of the way, they saw that my right ovary was 2-3 times larger than it should have been, because of endometriosis. I had suspected over the years that I had endometriosis (because 1 in 10 women do), but now there was no doubt about it. After my OB-GYN team was done removing my uterus and ovaries, an even bigger surprise was lying underneath of it all! The endometriosis had adhered to my back muscles in three different spots, and had all of my bowels tied in a giant knot. So my transplant team had to undo the adhesions, pull all of my bowels out, un-knot them (as best as they could), and then put them back into place.
Everything was going great, until exactly six weeks after my surgery. That is when my bowels decided that they didn't like getting "played" with during surgery, so they shut down completely. The treatment for this is the same as a bowel obstruction, so I went round #3 with yet another NG tube, and a bowel rest. Although the surgery has helped significantly with my obstructions, I had yet another one (Yes, #4) in March of 2020.
Now although I have summed up my story in a few short minutes, it took me three years to fight this horrific disease. Many strides have been made towards a world free of childhood cancer, thanks to organizations such as Children’s Cancer Research Fund, and that is why I am partnering with them to help raise money and awareness for childhood cancer. It is my hope that with the help of the Global United Pageant system, that my voice can become an even stronger voice for the nearly 40,000 children that are currently battling cancer.
Stage I: is when the tumor is only in the kidney, and was removed completely by surgery. The cancer has not grown into blood vessels next to the kidney. The tissue layer (the capsule) that surrounds the cancer was not broken during surgery. About 40% of all Wilms tumors are stage I.
Stage II: The cancer grew beyond the kidney, but was completely removed surgically without any apparent cancer left behind. About 20% of all Wilm's tumors are stage II.
Stage III: This stage refers to Wilms tumors that have not been completely removed. The cancer remaining after surgery is limited to the abdomen. About 20% of all Wilm's tumors are stage III.
Stage IV: The cancer has spread through the bloodstream to other organs far away from the kidneys, such as the lungs, liver, or bone, or to lymph nodes. About 10% of all Wilm's tumors are stage IV.
Stage V: Tumors are in both kidneys at the time of diagnosis. About 5% of all Wilm's tumors are stage V.
I was diagnosed with stage V wilm's tumor. At the time of diagnosis, I had a large grapefruit size tumor on my right kidney and 7-8 smaller tumors on my left kidney and was given a less then 3% chance of survival. They immediately removed my right kidney with surgery, and waited to see if chemotherapy would shrink the tumors on my left kidney. After being in renal failure for one month, and the chemo not working as planned, they removed my left kidney as well. This meant that I would have to have a kidney transplant to survive.
I was then placed on peritoneal dialysis, Peritoneal dialysis is a way to remove waste products from your blood when your kidneys can no longer do the job. During peritoneal dialysis, blood vessels in your abdominal lining (peritoneum) fill in for your kidneys, with the help of a fluid (dialysate) which is washed in and out of the peritoneal space. This didn’t work for me, because it ended up giving me peritonitis and almost killing me. The doctors then placed me on hemodialysis. I had to have my blood run through my body, because with no kidneys to flush my system, toxins and chemicals would build to deadly levels. I had dialysis done three days a week. Between those days, my parents had to very closely monitor my liquid intake or I would have drowned myself internally. They also had to make sure that I followed a very strict diet that would test the will power of any adult. As a child my diet was much stricter, because I still had a lot of growing to do. Before my treatment, doctors use to let children eat what they wanted, but they never grew to be any bigger than a child, because the doctors found that too much phosphorous didn’t allow for calcium to reach their bones. I could only have nine grapes in a week, because fruit and vegetables are loaded with phosphorous. My potassium intake also had to be watched very carefully, or an overdose could stop my heart. But I could eat all of the candy and jelly beans that I wanted to, as long as it didn’t have any chocolate or nuts in it.
At the same time as dialysis, I was also undergoing intense chemotherapy and radiation treatments. And although those treatments saved my life, they also left some lasting scars. These are what doctors call late effects. They are symptoms that can show up months or even years after treatments are finished. Even though the doctors tried to protect my spine with a steel rod, the radiation gave me a mild case of scoliosis. And the chemo therapy has weakened my heart, and has given me some issues with tachycardia or fast heart rate. Neither of these issues surfaced until years after I was in remission. I was diagnosed with scoliosis my sophomore year of high school, and the tachycardia my freshmen year of college.
At the age of three I suddenly couldn’t keep any type of food or liquid down. Just the sight of a picture of food made me start to throw up. The doctors ran test after test and had no reason for this to be happening to me. I had to be kept alive by an I.V. for six months. The doctors then decided to perform an exploratory surgery to find the source of the problem. When they went in, they found that 18 inches of my colon had basically died and was no longer working properly. So the doctors removed those 18 inches of my colon. After that I started eating anything and everything they would let me eat.
Later that year they were ready to declare me cancer free. But in order for me to get my kidney transplant I had to be declared cancer free for one year. Because you have a much higher rate of the cancer returning in the first year, and they don’t want to put a new organ into a body that could attack it all over again. The doctors wanted to give me one last dose of chemo before they let me go my one year. But there was a catch, the doctors didn’t know how much to give me. At that time I was the youngest case in the US and Canada that had little to no kidney function before transplant. So the doctors gave me my normal dose of chemo, because it never really made me that sick before. Well they now know that the dose that they gave me is too much. The chemo gave me toxicity poisoning, and I was basically a burn victim from the inside out. I was burned all the way down my throat, into the lining of my stomach, and my internal organs. The doctors told my parents that I only had 48 hours to live. And although it almost killed me, my oncologist said it also saved my life, because no cancer cells could have lived through that. Although the doctors had a lot to do with my recovery, I had a much higher power on my side. Even my oncologist said that God had something big planned for me, and that’s why he kept me around. I truly believe that running for Miss Global United and telling my story to others is the journey he had in mind for me.
On September 23, 1993 I received my kidney transplant from my father. When they do transplants they usually open the donor first, and then the recipient. But my oncologist begged the surgeon to open me first and make sure that all of the cancer was gone, because he couldn't believe that I was truly cancer free. But I shocked them all once again and received a brand new kidney. Although I lead a pretty normal life, I have more challenges than the average 27 year old. Because I have a kidney transplant, I have to take immuno-suppressants to keep my immune system very low. This means that I get sick very easily, and get hospitalized for simple things like the flu. I was even in Isolation for a week when I had the chicken pox, because they could have killed me. I also want to stress how no two cancer cases are alike. I was a rare case in the fact that I was diagnosed with stage 5 Wilm’s Tumor, I also was a rare case, in the fact that my cancer was in my genes and I will pass it on to my children and grandchildren. Also because I have a transplant, I have to have monthly labs drawn to make sure that my kidney is not rejecting.
After my December (2011) labs were drawn, the doctors noticed that my creatnine was too high, and needed me to come down to have a biopsy performed on my kidney. On January 27, 2012 I had a kidney biopsy done, and found that my kidney tested positive for donor specific anti-bodies, and was starting the process of rejection. The doctors immediately started me on apheresis and IVIG to try and get rid of the anti-bodies that were rejecting my kidney. I had to have a catheter placed into my chest in order to have the treatments done. I had to have five treatments done every other day for 10 days. On February 23, 2012 I had another biopsy done, and found out that my kidney has stopped rejecting for the time being. The anti-bodies will eventually come back, but these treatments will help prolong the need of a new transplant for about 10 more years. Because of this, I have also been able to have my catheter removed from my chest. The doctors have also discovered that I have chronic Anemia, and iron deficiency. To help control this I also had three iron infusions done, and have anemia shots, in my abdomen, every month. Thanks to the Doctors at the University of Minnesota I am able to carry on with my normal life until it is time for my next kidney transplant.
In April 2014, my world was once again turned upside down. I had been feeling ill for a couple of weeks, so the U did some blood tests, and found out I had Mononucleosis (mono). Mono can be extremely dangerous for an organ transplant recipient like me, so I was put on a very strict "bed rest" like restriction. After about a week, I was having pain in the upper right quadrant of my abdomen. I called the U, and they told me to go to my local ER and get checked. While I was at my local ER, they did a CT scan and found a mass on my liver. I was immediately sent to the U to find out what the mass was. They ran a lot of tests, and did a lot of scans to make sure they knew what it was. Luckily it was a benign tumor called an adanoma. From what the doctors could tell, it was about the size of a softball, and looked like it could be easily removed. Well when I was in surgery, they found a tumor much larger than they had planned for. My adanoma was the size of a football, and took up the whole right side of my abdomen. So instead of removing about 30% of my liver, they had to remove 65% of my liver, my gallbladder, and unfortunately my kidney transplant. This had to happen, because the adanoma was attached to all of those organs, and would not peel off of them like most adanomas do. So they immediately placed a dialysis catheter in my neck to start me on 24 hour dialysis. I was in the ICU for three days. After that they placed a more permanent dialysis catheter in my chest. I am currently on dialysis three times a week for 3 1/2 hrs each day. And I will remain on dialysis until my next transplant. I am not able to have another transplant until my mono is gone, because if you receive a transplant while you have mono, you will end up developing lymphoma.
In November of 2014 I took a tumble down the stairs while I was going to my room in the basement. Because I was so thin from dialysis, I ended up rupturing a lymph node open under my arm, and it caused a leak in my chest cavity. I was in the hospital from November 21, 2014- January 31, 2015. While in the hospital, I had to have two chest tubes placed in my back, and side to constantly keep removing fluid from my body. Because the fluid was fat based, I was on a diet of jello and ice chips for the majority of my hospital stay. I was also having a hard time with keeping my IV open in my arm. So to help save my veins in my arms, the doctors decided to place a port in my chest. The kind of port they put in is called a power port. Now whenever they need to place an IV to administer medications, or draw blood for labs, they just simply access my port that is in my left chest wall. But my troubles didn't stop there.
In March of 2015, I started acting very strange, and my family was getting very concerned. My mom took me to my local ER, and I was rushed by ambulance to the University of Minnesota Health Hospital. I was placed in the ICU with a blood pressure of 220/140 (120/80 or lower is normal). I was acting quite delusional, and couldn't seem to settle down. My mom thought I was finally settling down to sleep, but I ended up having a seizure instead. This ended up giving me PRES Syndrome in my brain. I still suffer with short term memory issues from that seizure, but my doctors expect that to get better with time.
On December 23, 2015 I had a new dialysis access, called a graft, placed in my left upper arm. This new access allows me to get better, and cleaner dialysis runs. It also allows me to have my catheter in my chest pulled. But once again this new step didn't come easily. During my one week check-up (post-op) from having my graft placed, an ultrasound showed that there was no blood flow going on. So on January 1, 2016 I had emergency surgery to open my graft up to allow blood flow. The surgeon removed two blood clots from my line to restore blood flow.
In May of 2016, I had an infusion of a chemo medication called rotuxim. My infectious disease Dr. decided that this was the only plan of action that I had left to try and get rid of my mono, since I have had it for almost three years. After the infusion was complete, I had to wait three months to see if it was successful. In September of 2016, I finally received the news that my mono was 100% GONE!!! That meant that I was finally able to be moved to the active waiting list, and receive a kidney.
I was searching for a donor, and started to not feel very well. I just figured that it was winter time, and that I picked up a slight cold. I ended up going to the ER at the U of MN, because of an ongoing rapid heart rate at dialysis. While I was there they ran an EBV (Mono) level, because my infectious Dr had ordered to have one done monthly. Two days later I received a phone call confirming that my mono had returned. I was crushed, and pissed off all in one. I contacted my Dr, and she immediately ordered TWO more chemo infusions for me. I received those infusions in February of 2017.
In May of 2017 I was once again mono free. Ever since then we have been on a "fast track" to get me a transplant. In November of 2017 I received the word that my mom was a match!!
On January 4th, 2018 my mom gave the gift of life for a second time, by giving me a new kidney! My kidney is functioning great, and I am able to lead the "normal" life of the average 28 year old.
In March of 2018 I started to experience severe abdominal pain after eating. After making several trips to the ER, they discovered that I had a small bowel obstruction. They thought that it was located at the old surgery site from when I was three years old. They immediately placed my on a bowel hold (No food, or liquids), and also placed an NG tube in my nose to suction out fluid that had built up in my stomach. They also had to use it to administer my medications, because I couldn't take in anything by mouth. Now I have been through a lot in my life, but nothing has ever been as painful as this obstruction was. Since I was in so much pain, they scheduled me for surgery. But thanks to answered prayers, my system started to open up on its own and I didn't have to have surgery after all. They also got to pull the NG tube out of my nose.
After this happened, I had to make a VERY difficult decision. That was to have a full hysterectomy at the age of 29. This was for several different reasons, because of a cancer history (both mine, and family), and not being able to carry a pregnancy due to my transplant. Shortly after making this decision, I had yet another small bowel obstruction, less than nine after the first one. So once again an NG tube was placed, and a bowel hold was done. Now this could happen again, but at least I know what it feels like so we can hopefully catch it earlier if it does ever happen again.
on January 18, 2019 I had my full hysterectomy. And that is when the surgeons found out why I was having bowel obstructions. After carefully moving my kidney out of the way, they saw that my right ovary was 2-3 times larger than it should have been, because of endometriosis. I had suspected over the years that I had endometriosis (because 1 in 10 women do), but now there was no doubt about it. After my OB-GYN team was done removing my uterus and ovaries, an even bigger surprise was lying underneath of it all! The endometriosis had adhered to my back muscles in three different spots, and had all of my bowels tied in a giant knot. So my transplant team had to undo the adhesions, pull all of my bowels out, un-knot them (as best as they could), and then put them back into place.
Everything was going great, until exactly six weeks after my surgery. That is when my bowels decided that they didn't like getting "played" with during surgery, so they shut down completely. The treatment for this is the same as a bowel obstruction, so I went round #3 with yet another NG tube, and a bowel rest. Although the surgery has helped significantly with my obstructions, I had yet another one (Yes, #4) in March of 2020.
Now although I have summed up my story in a few short minutes, it took me three years to fight this horrific disease. Many strides have been made towards a world free of childhood cancer, thanks to organizations such as Children’s Cancer Research Fund, and that is why I am partnering with them to help raise money and awareness for childhood cancer. It is my hope that with the help of the Global United Pageant system, that my voice can become an even stronger voice for the nearly 40,000 children that are currently battling cancer.