For my family, life has not worked out like we ever dreamed when we got married. For whatever reason, I feel the need to put our story on TBH. Im not really looking for sympathy or anything, just want to put it out there. FYI, this will be a long read.
-The wife and I married in June of 2010. We bought a home and enjoyed ourselves for a little while.
-December 2011: we announced to our family and friends that we were expecting a baby. This was probably the best Christmas present ever.
-February 2012: my wife began having severe abdominal pains. We were worried that something was wrong with the baby, so I came home from work and took her to the St. Elizabeth ER in Beaumont. The ER doctor ordered an ultrasound. The test was performed and we could hear a heartbeat, but couldn't see a baby. They determined that my wife had a large mass in her abdomen. The doctor came in, and broke the news to us. He said, "Mrs. Tucker, you have a large tumor in your stomach. I am sure its cancer, we are going to have to do surgery to cut it out. You are going to have to lose your baby to save your life." The reason she was in so much pain was that the tumor was quite large, and there was no more room for our son to grow. We talked about the situation, and told the doctor that we were going to get a second opinion in Houston. Amber was transferred via ambulance to Memorial Hermann Texas Womens Hospital. They began running tests, and looking into her case.
-March 2012: We were in the hospital for 2 weeks while they figured this out. All of the testing showed no markers for cancer. They eventually did a biopsy, and the test came back negative for cancer. They told us that it was a benign tumor, that she may have had since birth. It would take surgery to remove it. We were scared, but very glad that it was not cancerous. A surgery was scheduled 3 days from these findings, we went home for some rest and to get out of the hospital and clear our minds. We came back 3 mornings later for her surgery. She went under anesthesia, and the surgery began. She was 3 months pregnant at this point. The surgeon said that this would be about a 3 hour surgery, and that they would be monitoring the baby as best as they could. 3 hours passed, and we are all in the waiting area eager for updates. A nurse comes in and says that it will be a "little longer". The surgery ended up being 8.5 hours. The surgeon said that it was almost to the point of closing her up, and having a second surgery. The reason it took so long is that the main tumor, attached to her stomach was the size of a soccer ball. She also had a tumor on her pancreas, more in her liver, and also her spleen. So, at three months pregnant, they removed her complete stomach, her spleen, 1/2 of her pancreas, and a section of her liver. The surgeon said he got everything that he could see. They sent to tumors off for more testing given that it was so spread out. My wife and the baby survived the surgery fine, and went to ICU for about a week.
The testing came back, and we were told that she has a rare type of cancer called gastrointestinal stromal tumor, a.k.a "GIST". This cannot be treated by conventional chemo and radiation. There are only a few medicines known to treat it, and they are pills. Even worse, the type she was diagnosed with is known as a "Wild Type" because it has no markers. It is extremely rare, and there arent enough cases to do research and figure out a treatment due to short life expectancy. We are told that somebody with as much disease as she had typically wont live for another 2 years. As a family, we are crushed. Even though all the surgery and everything was scary, all along this was supposed to be non-cancerous. You know, cut it out and move along. They have a medicine called "Gleevec" that has been known to work on GIST, but it is unknown if it worked on her type. Her oncologist suggested starting the meds as soon as possible to try and keep it at bay. It is known to cause birth defects, etc. so we opted to wait until the baby was born.
April 2012: Amber is finally healing up well from the major surgery, and is released around the beginning of the month. She had a large incision from her chest, down past her belly button. She was on a liquid diet for a while, eventually moved to normal food but it made her sick all the time. I suppose eating without a stomach is not the easiest thing. Especially eating enough to provide for two people. She did have a feeding tube installed before we were released to help get extra nutrition because she was losing weight to rapidly. She was set up with a very well known gynecologist in Beaumont for the delivery prior to all this. We contacted their office about setting up an ultrasound to determine the gender. Once he heard the story, he dropped us as his patient. We had to continue driving to Houston from them on for checkups with a Maternal/Fetal specialist. I butted heads with her at the hospital in the beginning of the diagnosis, but once we saw eye to eye she became one of the best doctors that I have met. We have lost contact with her over the last two years or so, but she was always calling/texting and checking in. She was amazed by the case. We had an ultrasound done, and were told that we were having a baby boy. He was still healthy and doing everything he should. Her doctor tells us that she wants to induce labor a couple weeks early, since we have about a 2 hour drive to Houston.
May-July 2012: Quite a few trips to Houston for checkups take place, all is well.
August 24, 2012: Around 4PM, we are in the doctor's office for a checkup. Amber is already starting to dilate. We are sent directly to the hospital to get set up.
August 25, 2012: Early this morning, the doctor comes in to check, things are moving slow. She starts the induction process. This is a Saturday, not that many people are there. The doctor says she would typically have a nurse call when its time, but she sits outside the room all day. When things get going, it happens so fast that the doctor couldn't even get the whole "team" there in time. She delivered our son all by herself. Mother and son are fine. Somehow he managed to breathe in a little fluid, and has a slight respiratory problem. He is taken to the NICU eventually, but in 2 days he was fine. More of a precaution than anything. I will say, the NICU is a sad place. The nurses were ecstatic to see parents that actually show up for feedings and interaction with the babies. Alot of them were preemies, with dope headed moms that couldn't care less. They said that they may be there for weeks while the mom is at home. They won't even come see their kid. The Ronald McDonald house had a room come open, and they let us stay there for a few days after they released him from NICU to monitor him. This saved hotel bills/driving back and forth.
September 2012: We are all home, we had to move in with Amber's parents to help with the kid and her recovery. I had to get back to work, I had used all sick time and vacation that I had plus a couple weeks without pay. We switch her treatments over the MD Anderson due to their specialty. Amber starts the Gleevec medicine, and it has many of the normal side effects of chemo but is an oral medication. For somebody that can barely eat, taking this medication is VERY difficult for her. She stays sick all the time.
October 2012-October 2013: She has been taking her Gleevec, going for MRIs and checkups. Each MRI takes around 2-2.5 hours. Shes claustrophobic and cant sit still for that long in a tiny tube, so they put her to sleep for each one. They find that there are some very tiny spots in her liver that werent seen during surgery, and they will be monitoring it every 2 months. Through this year, no growth is noted.
The year of 2014: She has still been taking her medicine, still having lots of issues from it, but it has to be done. Near the end of the year, we go for a checkup and the small spots in her liver have slightly grown. The doctor tells us that she will have to be on the medicine for the rest of her life. She is 22 at this point, she has passed the 2 year life expectancy mark and is beating the odds.
The year of 2015: The spots in her liver continue to grow slowly, as the doctor said they would. They switch her to a different med to try it. It has worse side effects than the first, and she just cant handle it. Her quality of life is nearly non-existent. The doctor puts her back on her original medication.
At some point during this year, my father in law calls me while I am at work and says something is wrong and I should come home. Amber cannot speak without slurring, does not know our names, and cannot walk. The only real movement is her eyes twitching back and forth. We load up and take her to the MD Anderson ER. By this time, we have learned that local ERs are basically useless when they hear her history. They do CAT scans, and I forget what else. They cannot find a problem, although something is obivously wrong. A neurologist orders an EEG, to check her brain. A technician come in to do the test, and after a couple minutes her eyes get huge and says "HOLY CRAP". She runs out of the room withouth telling us anything and grabs the neurologist. It turns out she is having seizures. They have a fancy name for them, but in simple terms they are "non-convulsive seizures". She doesnt flop around or shake or anything. They administer medicine and the seizures stop and she is back to normal. Now she has another medicine that she have to take for the rest of her life, Keppra. It has its own side effects of course. They believe that some of the cancer meds may have caused to seizures to begin with.
The year of 2016: MRIs and checkups continue with slow growth of tumors. Seizures are pretty well controlled unless she gets sick and cant eat, which causes her to skip the meds. Given the continued growth of the cancer, we ask about stopping the Gleevec. Remember, they werent sure it would work on her type anyhow, and the cancer is still growing. She opts to stop taking the Gleevec with my support. If you have a limited time left, why live in misery. She needs to spend time with the kid, sickness due to medication was keeping her away from alot of experiences. Several checkups go by, and NO GROWTH is seen while off the medicine. Strange. For the first time since our son was born, she was actually able to enjoy the holiday season without being sick.
The year of 2017: We go to one MRI/checkup in the early part of the year, minimal growth is noted. We talk on the way home, and decide that we need some time away from dealing with cancer. This is something that they cannot cure, the meds arent working, so basically they are just monitoring her condition until she passes. Our son needs memories of his mother, other than her being sick all the time. We skip the rest of her scans and appointments for the year. We know it may not be for the best, but if you cant fix it then whats the point? She enjoys the year with no cancer medication, and no checkups full of anxiety waiting to hear the results. We are able to take a couple family trips, nothing major but we have alot of fun. We have our second year of normal family holidays, in which she is able to participate much more than ever before. She still has stomach issues from eating, but not anywhere near like when she takes the meds.
2018 so far: We went in for a checkup/MRI because we both had a bad feeling. We got the results last Friday. The tumors in her liver had grown considerably (given that we hadnt been in a year, the growth was more than what is seen every 2 months). They also have found a spot inside her heart. The odd thing is that this cancer doesn't typically attack muscles. The doctor feels like it is probably another tumor, and it is starting to spread through her body again. This is 6 years post surgery, so she had totally beaten any odds that her doctor has ever seen. This is pretty bad news though. She will be going in for a heart specific MRI to get a better look. We both feel that if it is in her heart, her time may be coming near. They want to try her on a different medication that is worse than the first two they gave her. They said that if it doesnt work, then there is nothing more they can do. We have been wanting another kid for a couple years, but its a scary situation. Now with this news, she wants to go ahead and have another. We both want our son to have a sibling. I am more worried about her having complications. I am not sure what she is going to do yet, she has hope that it will work. We both feel that taking the medicine may kill her quicker. If it was up to me I would stay off the meds and enjoy what I have left, but then again I am not in her position.
I guess we will see what the rest of the year brings. Thanks for reading, and remember that no matter what happens...dont give up.
-The wife and I married in June of 2010. We bought a home and enjoyed ourselves for a little while.
-December 2011: we announced to our family and friends that we were expecting a baby. This was probably the best Christmas present ever.
-February 2012: my wife began having severe abdominal pains. We were worried that something was wrong with the baby, so I came home from work and took her to the St. Elizabeth ER in Beaumont. The ER doctor ordered an ultrasound. The test was performed and we could hear a heartbeat, but couldn't see a baby. They determined that my wife had a large mass in her abdomen. The doctor came in, and broke the news to us. He said, "Mrs. Tucker, you have a large tumor in your stomach. I am sure its cancer, we are going to have to do surgery to cut it out. You are going to have to lose your baby to save your life." The reason she was in so much pain was that the tumor was quite large, and there was no more room for our son to grow. We talked about the situation, and told the doctor that we were going to get a second opinion in Houston. Amber was transferred via ambulance to Memorial Hermann Texas Womens Hospital. They began running tests, and looking into her case.
-March 2012: We were in the hospital for 2 weeks while they figured this out. All of the testing showed no markers for cancer. They eventually did a biopsy, and the test came back negative for cancer. They told us that it was a benign tumor, that she may have had since birth. It would take surgery to remove it. We were scared, but very glad that it was not cancerous. A surgery was scheduled 3 days from these findings, we went home for some rest and to get out of the hospital and clear our minds. We came back 3 mornings later for her surgery. She went under anesthesia, and the surgery began. She was 3 months pregnant at this point. The surgeon said that this would be about a 3 hour surgery, and that they would be monitoring the baby as best as they could. 3 hours passed, and we are all in the waiting area eager for updates. A nurse comes in and says that it will be a "little longer". The surgery ended up being 8.5 hours. The surgeon said that it was almost to the point of closing her up, and having a second surgery. The reason it took so long is that the main tumor, attached to her stomach was the size of a soccer ball. She also had a tumor on her pancreas, more in her liver, and also her spleen. So, at three months pregnant, they removed her complete stomach, her spleen, 1/2 of her pancreas, and a section of her liver. The surgeon said he got everything that he could see. They sent to tumors off for more testing given that it was so spread out. My wife and the baby survived the surgery fine, and went to ICU for about a week.
The testing came back, and we were told that she has a rare type of cancer called gastrointestinal stromal tumor, a.k.a "GIST". This cannot be treated by conventional chemo and radiation. There are only a few medicines known to treat it, and they are pills. Even worse, the type she was diagnosed with is known as a "Wild Type" because it has no markers. It is extremely rare, and there arent enough cases to do research and figure out a treatment due to short life expectancy. We are told that somebody with as much disease as she had typically wont live for another 2 years. As a family, we are crushed. Even though all the surgery and everything was scary, all along this was supposed to be non-cancerous. You know, cut it out and move along. They have a medicine called "Gleevec" that has been known to work on GIST, but it is unknown if it worked on her type. Her oncologist suggested starting the meds as soon as possible to try and keep it at bay. It is known to cause birth defects, etc. so we opted to wait until the baby was born.
April 2012: Amber is finally healing up well from the major surgery, and is released around the beginning of the month. She had a large incision from her chest, down past her belly button. She was on a liquid diet for a while, eventually moved to normal food but it made her sick all the time. I suppose eating without a stomach is not the easiest thing. Especially eating enough to provide for two people. She did have a feeding tube installed before we were released to help get extra nutrition because she was losing weight to rapidly. She was set up with a very well known gynecologist in Beaumont for the delivery prior to all this. We contacted their office about setting up an ultrasound to determine the gender. Once he heard the story, he dropped us as his patient. We had to continue driving to Houston from them on for checkups with a Maternal/Fetal specialist. I butted heads with her at the hospital in the beginning of the diagnosis, but once we saw eye to eye she became one of the best doctors that I have met. We have lost contact with her over the last two years or so, but she was always calling/texting and checking in. She was amazed by the case. We had an ultrasound done, and were told that we were having a baby boy. He was still healthy and doing everything he should. Her doctor tells us that she wants to induce labor a couple weeks early, since we have about a 2 hour drive to Houston.
May-July 2012: Quite a few trips to Houston for checkups take place, all is well.
August 24, 2012: Around 4PM, we are in the doctor's office for a checkup. Amber is already starting to dilate. We are sent directly to the hospital to get set up.
August 25, 2012: Early this morning, the doctor comes in to check, things are moving slow. She starts the induction process. This is a Saturday, not that many people are there. The doctor says she would typically have a nurse call when its time, but she sits outside the room all day. When things get going, it happens so fast that the doctor couldn't even get the whole "team" there in time. She delivered our son all by herself. Mother and son are fine. Somehow he managed to breathe in a little fluid, and has a slight respiratory problem. He is taken to the NICU eventually, but in 2 days he was fine. More of a precaution than anything. I will say, the NICU is a sad place. The nurses were ecstatic to see parents that actually show up for feedings and interaction with the babies. Alot of them were preemies, with dope headed moms that couldn't care less. They said that they may be there for weeks while the mom is at home. They won't even come see their kid. The Ronald McDonald house had a room come open, and they let us stay there for a few days after they released him from NICU to monitor him. This saved hotel bills/driving back and forth.
September 2012: We are all home, we had to move in with Amber's parents to help with the kid and her recovery. I had to get back to work, I had used all sick time and vacation that I had plus a couple weeks without pay. We switch her treatments over the MD Anderson due to their specialty. Amber starts the Gleevec medicine, and it has many of the normal side effects of chemo but is an oral medication. For somebody that can barely eat, taking this medication is VERY difficult for her. She stays sick all the time.
October 2012-October 2013: She has been taking her Gleevec, going for MRIs and checkups. Each MRI takes around 2-2.5 hours. Shes claustrophobic and cant sit still for that long in a tiny tube, so they put her to sleep for each one. They find that there are some very tiny spots in her liver that werent seen during surgery, and they will be monitoring it every 2 months. Through this year, no growth is noted.
The year of 2014: She has still been taking her medicine, still having lots of issues from it, but it has to be done. Near the end of the year, we go for a checkup and the small spots in her liver have slightly grown. The doctor tells us that she will have to be on the medicine for the rest of her life. She is 22 at this point, she has passed the 2 year life expectancy mark and is beating the odds.
The year of 2015: The spots in her liver continue to grow slowly, as the doctor said they would. They switch her to a different med to try it. It has worse side effects than the first, and she just cant handle it. Her quality of life is nearly non-existent. The doctor puts her back on her original medication.
At some point during this year, my father in law calls me while I am at work and says something is wrong and I should come home. Amber cannot speak without slurring, does not know our names, and cannot walk. The only real movement is her eyes twitching back and forth. We load up and take her to the MD Anderson ER. By this time, we have learned that local ERs are basically useless when they hear her history. They do CAT scans, and I forget what else. They cannot find a problem, although something is obivously wrong. A neurologist orders an EEG, to check her brain. A technician come in to do the test, and after a couple minutes her eyes get huge and says "HOLY CRAP". She runs out of the room withouth telling us anything and grabs the neurologist. It turns out she is having seizures. They have a fancy name for them, but in simple terms they are "non-convulsive seizures". She doesnt flop around or shake or anything. They administer medicine and the seizures stop and she is back to normal. Now she has another medicine that she have to take for the rest of her life, Keppra. It has its own side effects of course. They believe that some of the cancer meds may have caused to seizures to begin with.
The year of 2016: MRIs and checkups continue with slow growth of tumors. Seizures are pretty well controlled unless she gets sick and cant eat, which causes her to skip the meds. Given the continued growth of the cancer, we ask about stopping the Gleevec. Remember, they werent sure it would work on her type anyhow, and the cancer is still growing. She opts to stop taking the Gleevec with my support. If you have a limited time left, why live in misery. She needs to spend time with the kid, sickness due to medication was keeping her away from alot of experiences. Several checkups go by, and NO GROWTH is seen while off the medicine. Strange. For the first time since our son was born, she was actually able to enjoy the holiday season without being sick.
The year of 2017: We go to one MRI/checkup in the early part of the year, minimal growth is noted. We talk on the way home, and decide that we need some time away from dealing with cancer. This is something that they cannot cure, the meds arent working, so basically they are just monitoring her condition until she passes. Our son needs memories of his mother, other than her being sick all the time. We skip the rest of her scans and appointments for the year. We know it may not be for the best, but if you cant fix it then whats the point? She enjoys the year with no cancer medication, and no checkups full of anxiety waiting to hear the results. We are able to take a couple family trips, nothing major but we have alot of fun. We have our second year of normal family holidays, in which she is able to participate much more than ever before. She still has stomach issues from eating, but not anywhere near like when she takes the meds.
2018 so far: We went in for a checkup/MRI because we both had a bad feeling. We got the results last Friday. The tumors in her liver had grown considerably (given that we hadnt been in a year, the growth was more than what is seen every 2 months). They also have found a spot inside her heart. The odd thing is that this cancer doesn't typically attack muscles. The doctor feels like it is probably another tumor, and it is starting to spread through her body again. This is 6 years post surgery, so she had totally beaten any odds that her doctor has ever seen. This is pretty bad news though. She will be going in for a heart specific MRI to get a better look. We both feel that if it is in her heart, her time may be coming near. They want to try her on a different medication that is worse than the first two they gave her. They said that if it doesnt work, then there is nothing more they can do. We have been wanting another kid for a couple years, but its a scary situation. Now with this news, she wants to go ahead and have another. We both want our son to have a sibling. I am more worried about her having complications. I am not sure what she is going to do yet, she has hope that it will work. We both feel that taking the medicine may kill her quicker. If it was up to me I would stay off the meds and enjoy what I have left, but then again I am not in her position.
I guess we will see what the rest of the year brings. Thanks for reading, and remember that no matter what happens...dont give up.
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