Thursday, August 18, 2011
Komen Invitation!
Since they have sent it out and it is on their website now, I thought I would share...
Final Surgery!
August 16, almost one year to the day (8/15) that she first showed me the lump, Morgan underwent her final surgical procedure! Dr Agarwol performed a bi-lateral expander removal with a right latissimus flap and bi-lateral implant placement. That is the long way to say reconstructive surgery. Morgan has been wearing tissue expanders since January. She hates them and has complained that they hurt and are uncomfortable. They are oddly shaped and have some rough edges inside of her. They have been inserting a needle into the port located on them and injecting saline in order to enlarge the space behind her pec muscle.
Due to the radiation on her right side, most of the blood supply to her skin has been killed. She needed to have new blood supply placed in there so the doctor cut an incision across the right side of her back, just under her braline and cut out about half of her latissimus dorsi muscle. Leaving its blood supply intact, he pushed it through to the front and placed it in her chest along with a smaller silicone implant. On the left side, there was just a regular silicone implant placed that was a little larger than the one on the right.
Morgan was so cute as they gave her some meds to relax in the pre operative room. She likes the way it makes her feel! She woke up in recovery and they let me come back there. We spent about an hour in there with some amazing nurses who tended to her every need. Morgan commented that this surgery was much better than the last...already! She looked much better than the last time as well.
Soon she was moved up to the 5th floor where she has been for two nights. Just as when she was a baby in the hospital, her dad takes the night shift. She has been watching episode after episode of "Seinfeld" and has had lots of family visitors...mom, dad, Crystal, Boyd, Kylee, Kevin, Aiden, Doug, Riley and friends Kaylee, and Alisha. We are right now waiting for the go ahead to go home. The plan is to get there today!
She won't be able to lift anything for a few weeks and will hopefully be able to go to school as long as she doesn't need a bag or books to carry from class to class. She is definitely ready to go home! Thanks everyone for all of the well wishes and prayers on our behalf.
Due to the radiation on her right side, most of the blood supply to her skin has been killed. She needed to have new blood supply placed in there so the doctor cut an incision across the right side of her back, just under her braline and cut out about half of her latissimus dorsi muscle. Leaving its blood supply intact, he pushed it through to the front and placed it in her chest along with a smaller silicone implant. On the left side, there was just a regular silicone implant placed that was a little larger than the one on the right.
Morgan was so cute as they gave her some meds to relax in the pre operative room. She likes the way it makes her feel! She woke up in recovery and they let me come back there. We spent about an hour in there with some amazing nurses who tended to her every need. Morgan commented that this surgery was much better than the last...already! She looked much better than the last time as well.
Soon she was moved up to the 5th floor where she has been for two nights. Just as when she was a baby in the hospital, her dad takes the night shift. She has been watching episode after episode of "Seinfeld" and has had lots of family visitors...mom, dad, Crystal, Boyd, Kylee, Kevin, Aiden, Doug, Riley and friends Kaylee, and Alisha. We are right now waiting for the go ahead to go home. The plan is to get there today!
She won't be able to lift anything for a few weeks and will hopefully be able to go to school as long as she doesn't need a bag or books to carry from class to class. She is definitely ready to go home! Thanks everyone for all of the well wishes and prayers on our behalf.
Wednesday, August 17, 2011
South Africa
July 28 through August 10th Morgan was in South Africa with her dad, Crystal, and Doug. They flew to Washington, D.C. and then an 18 hour flight to Johannesburg, South Africa. Most of the time was spent out in blinds hunting with a bow. Morgan shot three animals...two warthogs and one impala! She told me that she loved the food they ate which included many different types of wild game and lots of onions.
Morgan enjoyed hearing about the riots of 1976 concerning Apartheid, visiting the home of Nelson Mandela, and learning about other South African history. It was the middle of winter there and Morgan said it was strange to see the moon in the "wrong" part of the sky and the crescent on the "wrong" side of the moon since they were in a different hemisphere.
Morgan enjoyed hearing about the riots of 1976 concerning Apartheid, visiting the home of Nelson Mandela, and learning about other South African history. It was the middle of winter there and Morgan said it was strange to see the moon in the "wrong" part of the sky and the crescent on the "wrong" side of the moon since they were in a different hemisphere.
Aiden Chad Labrum
On July 21, 2011 Morgan became an aunt to Aiden Chad Labrum. He was born at 5:16 am to Kylee Anne and Kevin C. Labrum. He weighed in at 8' 9" and was 21" long! Everybody is doing great!!!
Li Fraumeni Screening #1
It has been six months since Morgan's PET scan in January so we contacted Huntsman and asked about what to do concerning her screening for Li Fraumeni. She was scheduled for a visit to dermatology, bloodwork, brain MRI, and a full body MRI.
Dermatology was first. They did a head to toe exam looking for anything out of the ordinary and didn't find anything. It really was just a baseline appointment and we won't have to go back for two years unless something shows up that is a concern. Morgan's bloodwork looked really good. She has a few things that show up a little low, but supposedly that is left over from the chemotherapy.
The brain MRI had really good news! There were no solid masses which would indicate tumors. A couple of areas of white matter were "overintensified" which is indicative of "chemo brain." It explains why she sometimes feels fuzzy or can't remember something. The doctors said that on most people this wouldn't even be mentioned, they would just say that your scan was normal. It may or may not resolve itself. Also, some small cysts showed up in her sinus that are most likely left over from a sinus infection, but no worries.
The full body MRI covered from the base of her skull to the base of her spine. Again, it was really good news! She has a small ovarian cyst that will resolve itself but other than that a CLEAN SCAN!!! We are so very blessed!
The plan now is to do another scan in six months to see if there are any changes in any of the above mentioned issues. Morgan has decided to attend Herriman High School with me this year so for now her job is to just live as normal a life as possible for a 16/17 year old girl!
Dermatology was first. They did a head to toe exam looking for anything out of the ordinary and didn't find anything. It really was just a baseline appointment and we won't have to go back for two years unless something shows up that is a concern. Morgan's bloodwork looked really good. She has a few things that show up a little low, but supposedly that is left over from the chemotherapy.
The brain MRI had really good news! There were no solid masses which would indicate tumors. A couple of areas of white matter were "overintensified" which is indicative of "chemo brain." It explains why she sometimes feels fuzzy or can't remember something. The doctors said that on most people this wouldn't even be mentioned, they would just say that your scan was normal. It may or may not resolve itself. Also, some small cysts showed up in her sinus that are most likely left over from a sinus infection, but no worries.
The full body MRI covered from the base of her skull to the base of her spine. Again, it was really good news! She has a small ovarian cyst that will resolve itself but other than that a CLEAN SCAN!!! We are so very blessed!
The plan now is to do another scan in six months to see if there are any changes in any of the above mentioned issues. Morgan has decided to attend Herriman High School with me this year so for now her job is to just live as normal a life as possible for a 16/17 year old girl!
Meeting with Komen
When we entered the Race for the Cure last May, I had written the Komen SLC Affiliate about Morgan's story. They were very interested in meeting her once the craziness of the race had died down. So we finally got together with them in June. You would have thought we were celebrities the way we were treated.
Morgan told them her story starting from when she first felt the lump through how she has dealt with school to her plans for the future. They discussed different options of how Morgan could become involved with Komen and their mission. Morgan wants to help bring awareness to the younger generation and have young girls become familiar with self exams. Komen has decided to write a letter to all of the Student Body Presidents in all of the high schools in Utah and ask them to participate in some type of pink fundraiser this year. In the middle of the letter is Morgan's personal story written in her own words:
When you are 15 years old, you are probably worrying about getting your driver's license, going to prom, or getting your first job. Wondering if you'll be alive in the next year isn't exactly the first thing to come into your mind. In August of 2010, I showed my mom a large lump in my breast that I was concerned about. She, naturally, became very worried and contacted 5 different doctors about the matter. After many different appointments we finally had the lump removed on August 25th with the thought of the mass being nothing more than a swollen gland or a fibroid cyst. Only two days later, my life changed completely.
"Triple Negative Medullary Breast Cancer" is what they called it. More doctors and more procedures gave me my schedule for the next year or so. Six chemotherapy treatments - each three weeks apart, a double mastectomy in January 2011, and radiation M-F for five weeks. The type of cancer I had was not only one of the rarest types, but it is also one of the most aggressive. Because of this, I had to have one of the most toxic forms of chemotherapy and also had the most invasive and radical surgical treatments possible due to the high chance of recurrence of my tumor without those treatments. It has been a very long process and has taken every bit of energy I have. I finished radiation treatments in late April and now only need one more reconstructive surgical procedure this fall.
Because of this whole ordeal, I basically missed my entire Junior year at Riverton High School, and also lost (along with my hair) many moments I could have shared with my friends and family. Breast Cancer is known as an "old woman's" disease. I want to send this message with the great people of Susan G. Komen for the Cure to alert and notify the public that it is far from it. This disease can affect anyone; daughters, mothers, sisters, aunts, grandmas, even men. I hold myself personally responsible to spread breast cancer awareness among young people and educate them about checking themselves. I want to enforce the act of getting annual mammograms at an even young age than ever before realized. I hope my story can inspire you to do the same.
Komen also is having a large Survivor Gala in October and have chosen to use a picture of Morgan as their invitation. It reads...Fight Like a Girl! It is so awesome! Morgan's brother, Doug, took the picture of her earlier this year when she didn't have much hair and she looks so great! Once they have sent out the invites, I will post a copy of it online, but I don't want to steal the moment, so for now it is just for the family to see. One of the pictures was maniputlated into an art project for a class at BYU by Kylee. It is absolutely amazing. She cut the word Survivor into the background and then cut some flowering vines coming out of Morgans chest to represent regrowth. Don't be surprised if you see it on a billboard someday.
I am so very proud of Morgan and her decision to represent young survivors. She is very passionate about informing young women so they don't have to go through what she has had to go through. Check yourself at any age!
Morgan told them her story starting from when she first felt the lump through how she has dealt with school to her plans for the future. They discussed different options of how Morgan could become involved with Komen and their mission. Morgan wants to help bring awareness to the younger generation and have young girls become familiar with self exams. Komen has decided to write a letter to all of the Student Body Presidents in all of the high schools in Utah and ask them to participate in some type of pink fundraiser this year. In the middle of the letter is Morgan's personal story written in her own words:
When you are 15 years old, you are probably worrying about getting your driver's license, going to prom, or getting your first job. Wondering if you'll be alive in the next year isn't exactly the first thing to come into your mind. In August of 2010, I showed my mom a large lump in my breast that I was concerned about. She, naturally, became very worried and contacted 5 different doctors about the matter. After many different appointments we finally had the lump removed on August 25th with the thought of the mass being nothing more than a swollen gland or a fibroid cyst. Only two days later, my life changed completely.
"Triple Negative Medullary Breast Cancer" is what they called it. More doctors and more procedures gave me my schedule for the next year or so. Six chemotherapy treatments - each three weeks apart, a double mastectomy in January 2011, and radiation M-F for five weeks. The type of cancer I had was not only one of the rarest types, but it is also one of the most aggressive. Because of this, I had to have one of the most toxic forms of chemotherapy and also had the most invasive and radical surgical treatments possible due to the high chance of recurrence of my tumor without those treatments. It has been a very long process and has taken every bit of energy I have. I finished radiation treatments in late April and now only need one more reconstructive surgical procedure this fall.
Because of this whole ordeal, I basically missed my entire Junior year at Riverton High School, and also lost (along with my hair) many moments I could have shared with my friends and family. Breast Cancer is known as an "old woman's" disease. I want to send this message with the great people of Susan G. Komen for the Cure to alert and notify the public that it is far from it. This disease can affect anyone; daughters, mothers, sisters, aunts, grandmas, even men. I hold myself personally responsible to spread breast cancer awareness among young people and educate them about checking themselves. I want to enforce the act of getting annual mammograms at an even young age than ever before realized. I hope my story can inspire you to do the same.
Komen also is having a large Survivor Gala in October and have chosen to use a picture of Morgan as their invitation. It reads...Fight Like a Girl! It is so awesome! Morgan's brother, Doug, took the picture of her earlier this year when she didn't have much hair and she looks so great! Once they have sent out the invites, I will post a copy of it online, but I don't want to steal the moment, so for now it is just for the family to see. One of the pictures was maniputlated into an art project for a class at BYU by Kylee. It is absolutely amazing. She cut the word Survivor into the background and then cut some flowering vines coming out of Morgans chest to represent regrowth. Don't be surprised if you see it on a billboard someday.
I am so very proud of Morgan and her decision to represent young survivors. She is very passionate about informing young women so they don't have to go through what she has had to go through. Check yourself at any age!
Tuesday, August 16, 2011
Mexico!
May 8 - 22 was spent in the Mayan Riviera part of Mexico! Morgan, Riley, Mom and Boyd flew down for a much needed respite from doctors and hospitals. After one week, Boyd flew home and Kylee and Kaylee flew down for the second week of fun and relaxation. The biggest decision we had to make on a daily basis was whether to go to the pool or the beach!
Morgan's doctors warned her to be careful in the sun so she wore a "rash shirt" some of the time and we spent time under the cabanas. One interesting thing was that when she laid out on her back so that she could get sun on the front, a perfect rectangle showed up on the back of her shoulder! It was the strangest thing! The lines were perfectly straight and it was obviously from the radiation.
We swam with dolphins, sharks, and stingrays; played on the beach in the surf and shopped in the local markets. We painted pottery, ate lots of yummy food, and shopped some more! Our resort was located halfway between Cancun and Playa del Carmen so we spent some time in both towns. It was so beautiful and we made the best of memories!!
Morgan's doctors warned her to be careful in the sun so she wore a "rash shirt" some of the time and we spent time under the cabanas. One interesting thing was that when she laid out on her back so that she could get sun on the front, a perfect rectangle showed up on the back of her shoulder! It was the strangest thing! The lines were perfectly straight and it was obviously from the radiation.
We swam with dolphins, sharks, and stingrays; played on the beach in the surf and shopped in the local markets. We painted pottery, ate lots of yummy food, and shopped some more! Our resort was located halfway between Cancun and Playa del Carmen so we spent some time in both towns. It was so beautiful and we made the best of memories!!
Radiation Treatments Through April 21st
Morgan was a trooper through radiation. It was at 3:15 every day M - F for 24 sessions. Each session only lasted about 15 minutes or so, but it took us about 40 minutes to drive there and an hour to an hour and a half to drive home due to rush hour traffic. We would go into the facility and Morgan would change into a gown. She would go into a room where the door and walls were over a foot thick. She laid down on a table with a plastic form for her head and they would line up her "tattoos" with the lasers until she was in the exact position. She had to hold perfectly still while the machine rotated around her.
The staff at Utah Cancer Specialists were so wonderful. Morgan went to the Prom during her radiation treatments. On the day of the dance, they let her come in at 9 in the morning rather than at 3 in the afternoon. They were all so excited for her and wanted to see her pictures the next week. It was like being a part of a big family of people who truly cared about Morgan and wanted her to not only get better physically, but to be happy and emotionally healthy as well.
One visit, about halfway through the process, I was waiting and waiting for her to come out. In the waiting room there were several of the same wonderful people that I came to know quite well and became good friends with. We would do puzzles and share stories...they were truly a blessing to us. Anyway, it had been quite a while and I looked at my watch...it had been an hour! Should I be worried? What was taking so long? After about another half hour, Morgan came out looking a little worse for wear. She was holding her neck and didn't look very happy.
Apparently the doctor wasn't pleased with the way things were lining up and wanted to make sure it was perfect. The tattoo wasn't in the right place on her body (the tech had placed it to the side so it wouldn't show when Morgan wore a v-neck rather than right in the center of her chest). So from that session on, they were going to take x-rays first to make sure the radiation was hitting the exact spot each and every time. Good news for thoroughness/bad news for comfort. Now the sessions were always 45 minutes or longer. I am not complaining, I would do anything for my kids, but it is strange to look back on this time for it felt like it would never end.
On April 21st, after Morgan completed her last radiation treatment, she came out and "rang the bell." It was awesome! It is a tradition to ring the bell after completing radiation treatment. We were fortunate enough to witness more than one patient get to ring the bell. It is an empowering and emotional moment for them and their families.
FYI: Once you have radiated a particular area, that area cannot be radiated again. You can have chemo for a recurrence, but cannot have a second round of radiation in the same exact area. That was something I did not know.
The staff at Utah Cancer Specialists were so wonderful. Morgan went to the Prom during her radiation treatments. On the day of the dance, they let her come in at 9 in the morning rather than at 3 in the afternoon. They were all so excited for her and wanted to see her pictures the next week. It was like being a part of a big family of people who truly cared about Morgan and wanted her to not only get better physically, but to be happy and emotionally healthy as well.
One visit, about halfway through the process, I was waiting and waiting for her to come out. In the waiting room there were several of the same wonderful people that I came to know quite well and became good friends with. We would do puzzles and share stories...they were truly a blessing to us. Anyway, it had been quite a while and I looked at my watch...it had been an hour! Should I be worried? What was taking so long? After about another half hour, Morgan came out looking a little worse for wear. She was holding her neck and didn't look very happy.
Apparently the doctor wasn't pleased with the way things were lining up and wanted to make sure it was perfect. The tattoo wasn't in the right place on her body (the tech had placed it to the side so it wouldn't show when Morgan wore a v-neck rather than right in the center of her chest). So from that session on, they were going to take x-rays first to make sure the radiation was hitting the exact spot each and every time. Good news for thoroughness/bad news for comfort. Now the sessions were always 45 minutes or longer. I am not complaining, I would do anything for my kids, but it is strange to look back on this time for it felt like it would never end.
On April 21st, after Morgan completed her last radiation treatment, she came out and "rang the bell." It was awesome! It is a tradition to ring the bell after completing radiation treatment. We were fortunate enough to witness more than one patient get to ring the bell. It is an empowering and emotional moment for them and their families.
FYI: Once you have radiated a particular area, that area cannot be radiated again. You can have chemo for a recurrence, but cannot have a second round of radiation in the same exact area. That was something I did not know.
Tuesday, July 19, 2011
Radiation Begins... (March 23)
Okay, so I deserve "The Worst Blogger" award! I shall do my best to redeem myself. On 3/15 we met with Dr. Avizonis (our radialogic oncologist). (We LOVE her!) When Alison weighed Morgan she says, "Perfect, as usual." I told her that that wasn't the usual answer and she said, "well, they (others) just aren't as smart as we are here!" This is just an example of the type of people and treatment we can expect to receive from these great people.
The Doctor told us that she had been thinking about Morgan a lot over the last few months and had awoken in a panic just that morning over her. In fact, she had called a "mini tumor conference" on the phone that morning just to make sure they were doing the right thing starting radiation. And the consensus was that "the risk of regional re-occurrence is high so radiation is necessary."
Morgan began with a CT scan which the doctor would then create a grid on the computer and compare to her PET scan. It was decided to radiate the internal mammary lymph nodes up by her collar bone also. This would consist of 24 total treatments Monday through Friday. She would have a sunburn show up about halfway through the treatment and her skin and pec muscle would get very tight. The worst side effect would be the fatigue.
We then went into the CT scan where they lined up her body to red lasers lined up on a grid system. Once everything lined up just where they wanted it, Morgan received her 3 tattoos! These made it possible to line her up in the exact same position each day. One is on the back and sort of under each arm, and one is on her chest. They are only as large as a pin dot and so it is really not that big of a deal. The tech placed a drop of black ink on her skin and then punctured her with a needle and voila! The one on her chest hurt quite badly and she didn't like that so much.
The doctor then spent the next week building an xyz graph over the CT scan of Morgan's chest to determine the specific areas which would need radiation and we were due to come back to begin the sessions on the 22nd of March.
The Doctor told us that she had been thinking about Morgan a lot over the last few months and had awoken in a panic just that morning over her. In fact, she had called a "mini tumor conference" on the phone that morning just to make sure they were doing the right thing starting radiation. And the consensus was that "the risk of regional re-occurrence is high so radiation is necessary."
Morgan began with a CT scan which the doctor would then create a grid on the computer and compare to her PET scan. It was decided to radiate the internal mammary lymph nodes up by her collar bone also. This would consist of 24 total treatments Monday through Friday. She would have a sunburn show up about halfway through the treatment and her skin and pec muscle would get very tight. The worst side effect would be the fatigue.
We then went into the CT scan where they lined up her body to red lasers lined up on a grid system. Once everything lined up just where they wanted it, Morgan received her 3 tattoos! These made it possible to line her up in the exact same position each day. One is on the back and sort of under each arm, and one is on her chest. They are only as large as a pin dot and so it is really not that big of a deal. The tech placed a drop of black ink on her skin and then punctured her with a needle and voila! The one on her chest hurt quite badly and she didn't like that so much.
The doctor then spent the next week building an xyz graph over the CT scan of Morgan's chest to determine the specific areas which would need radiation and we were due to come back to begin the sessions on the 22nd of March.
Monday, March 14, 2011
Setback...
So once the drains were taken completely out...Morgan began having tissue expansions. The first expansion was only 30 cc's and the second one given a week later was for 60 cc's more. Things went really well and we thought we were on the road to recovery.
At the next expansion appointment, Morgan was putting on the hospital gown and I looked over to help her and saw that her right side was about 1/3 to 1/2 larger than her left. It was also bright pink. Vicky, the nurse, came into the room - took one look and said, "I hate to tell you this darlin', but I am NOT going to stick that with a needle...." :-D She told us that she was going to tattle on us with the surgeon and off she went.
Morgan and I just looked at each other and wondered what else could happen to us along the way! It seems like we take two steps forward and one step back. We have been planning to take a respite vacation so we can truly rest and recuperate from all of the stress and demands of our lives the last six months or so. We thought we had given enough time before our planned date of departure for expansion and radiation, but any more delays and we weren't so sure if we could still make it.
Dr. Agarwol came back and took one look and sat down with his chin in his hand. (he doesn't say much, but this body language means he just doesn't want to say what he is thinking) He asked Morgan how much she minded the size she is right now....because he doesn't really want to expand her any further!!!! He also said that it is getting to be time to begin radiation....we are 8 weeks out from the surgery. I asked him how long we could wait and he said he didn't really know, but we are there.
His final plan was to begin Morgan on heavy antibiotics to kill the infection that is obviously in her right side. He wants to see us at the end of the week for a follow up and will decide then if he will expand her any further....not the best news. Also, if the antibiotic doesn't make a great change in a day or two, she will be getting a port with IV antibiotics.
To give you an idea of what we are talking about in reference to size...the surgery removed 590 from the left and 530 from the right (after the original lump [about 60 cc's] was removed). The surgery replaced 300 on each side and now we have added 90 for a total of 390....not quite what she started with but still more than some girls were blessed with originally!!
Well, that was a week ago....(time flies when you write waay after the fact!) We went to see the doctor on Friday to check the infection. The pink is gone, but the side is still obviously larger than the other and has small pockets of fluid you can feel. Dr. Powers came in and expanded the left side another 30 cc's so they would match due to the inflammation....(I wonder what will happen when the infection is gone and the right side goes back to what it was...). Dr. Agarwol told us to make an appointment to begin the radiation simulation next week (the appt. is on Tuesday the 15th). Dr. Agarwol doesn't want to do any more expansions...period! However, he did say that when he does the reconstruction this summer, that he can stretch it up a little bit from where it is. (That is good news!)
At this point we aren't sure what to expect from the radiation simulation. Apparently it is just that...they pretend to give her the radiation to check on specifics of the location and amount. They told us that this is when she will get the small tattoos (greenish in color) to mark the spot. Radiation is the part of all of this that scares me the most!!! I know it isn't going to hurt, or necessarily cause Morgan to feel sick in any way. That isn't what makes me nervous...
Radiation can cause cancer!!! Ironic isn't it? The very thing that will save her life from this cancer... could very well cause a new cancer to form in her body that cannot fight cancer....EVER!!! It has been a painful decision for me to understand. Most people fear the chemotherapy more than the radiation because it is poison which is injected into your body to practically kill it before they stop. Who wants to inject their child with poison? Well, as far as that goes, radiation is much more harmful to a Li-Fraumeni patient than just about any other thing on this earth. Any amount of radiation that Morgan is exposed to for the rest of her life could very well start a new cancer growing inside of her.
You know when you are pregnant and you aren't supposed to take anything...not even an aspirin in case it does harm to the baby? Then you go into the hospital to have the baby and the doctor prescribes drugs like morpheine to get you through the birth and you wonder how that works...what is happening to the baby? Well, Morgan is not supposed to have ANY radiation for the rest of her life....not even dental x-rays unless absolutely necessary. Now we are going to radiate her body five days a week for five weeks!!!!
Just a little bit that this mom needs to remain calm about.....so, for those of you who tell me that I should be so glad the worst is over.....just wait until after her reconstruction surgery to tell me that. I am so very grateful for the results we have received. Morgan is cancer free! She beat this cancer right into the ground, but we still have a tough road ahead of us...Dr. Agarwol chose Friday to ask us about the reconstruction and give him an idea of where we are headed. Morgan has chosen to go for the lat-muscle option. This will mean that she will have surgery on her back and front! (where is she going to lay down?) They will wrap part of the lat-muscle around under her arm and roll it up to create a breast. It really is amazing...but still very major and very unnerving, for me anyway. I promise to write more about that as it happens.
Thank you all for checking the blog once again to see the update. I apologize for not writing more, but there isn't that much happening every single day. We appreciate you for staying interested in us and what we do. We love you for caring and praying for us. We feel the prayers and the many blessings you all bring into our lives. We were talking the other day about how difficult it would be to not have all of those blessings. What it would feel like to not have the strength of others with us every single day. Please know that it is not going unnoticed or unappreciated. We have some thank yous to write still, but please don't feel that what you do for us is overlooked or taken for granted. Some have prepared meals, written notes of encouragement, visited, brought treats and meals and gifts, or even generously donated money to our cause. Thank you, thank you and thank you!!!
At the next expansion appointment, Morgan was putting on the hospital gown and I looked over to help her and saw that her right side was about 1/3 to 1/2 larger than her left. It was also bright pink. Vicky, the nurse, came into the room - took one look and said, "I hate to tell you this darlin', but I am NOT going to stick that with a needle...." :-D She told us that she was going to tattle on us with the surgeon and off she went.
Morgan and I just looked at each other and wondered what else could happen to us along the way! It seems like we take two steps forward and one step back. We have been planning to take a respite vacation so we can truly rest and recuperate from all of the stress and demands of our lives the last six months or so. We thought we had given enough time before our planned date of departure for expansion and radiation, but any more delays and we weren't so sure if we could still make it.
Dr. Agarwol came back and took one look and sat down with his chin in his hand. (he doesn't say much, but this body language means he just doesn't want to say what he is thinking) He asked Morgan how much she minded the size she is right now....because he doesn't really want to expand her any further!!!! He also said that it is getting to be time to begin radiation....we are 8 weeks out from the surgery. I asked him how long we could wait and he said he didn't really know, but we are there.
His final plan was to begin Morgan on heavy antibiotics to kill the infection that is obviously in her right side. He wants to see us at the end of the week for a follow up and will decide then if he will expand her any further....not the best news. Also, if the antibiotic doesn't make a great change in a day or two, she will be getting a port with IV antibiotics.
To give you an idea of what we are talking about in reference to size...the surgery removed 590 from the left and 530 from the right (after the original lump [about 60 cc's] was removed). The surgery replaced 300 on each side and now we have added 90 for a total of 390....not quite what she started with but still more than some girls were blessed with originally!!
Well, that was a week ago....(time flies when you write waay after the fact!) We went to see the doctor on Friday to check the infection. The pink is gone, but the side is still obviously larger than the other and has small pockets of fluid you can feel. Dr. Powers came in and expanded the left side another 30 cc's so they would match due to the inflammation....(I wonder what will happen when the infection is gone and the right side goes back to what it was...). Dr. Agarwol told us to make an appointment to begin the radiation simulation next week (the appt. is on Tuesday the 15th). Dr. Agarwol doesn't want to do any more expansions...period! However, he did say that when he does the reconstruction this summer, that he can stretch it up a little bit from where it is. (That is good news!)
At this point we aren't sure what to expect from the radiation simulation. Apparently it is just that...they pretend to give her the radiation to check on specifics of the location and amount. They told us that this is when she will get the small tattoos (greenish in color) to mark the spot. Radiation is the part of all of this that scares me the most!!! I know it isn't going to hurt, or necessarily cause Morgan to feel sick in any way. That isn't what makes me nervous...
Radiation can cause cancer!!! Ironic isn't it? The very thing that will save her life from this cancer... could very well cause a new cancer to form in her body that cannot fight cancer....EVER!!! It has been a painful decision for me to understand. Most people fear the chemotherapy more than the radiation because it is poison which is injected into your body to practically kill it before they stop. Who wants to inject their child with poison? Well, as far as that goes, radiation is much more harmful to a Li-Fraumeni patient than just about any other thing on this earth. Any amount of radiation that Morgan is exposed to for the rest of her life could very well start a new cancer growing inside of her.
You know when you are pregnant and you aren't supposed to take anything...not even an aspirin in case it does harm to the baby? Then you go into the hospital to have the baby and the doctor prescribes drugs like morpheine to get you through the birth and you wonder how that works...what is happening to the baby? Well, Morgan is not supposed to have ANY radiation for the rest of her life....not even dental x-rays unless absolutely necessary. Now we are going to radiate her body five days a week for five weeks!!!!
Just a little bit that this mom needs to remain calm about.....so, for those of you who tell me that I should be so glad the worst is over.....just wait until after her reconstruction surgery to tell me that. I am so very grateful for the results we have received. Morgan is cancer free! She beat this cancer right into the ground, but we still have a tough road ahead of us...Dr. Agarwol chose Friday to ask us about the reconstruction and give him an idea of where we are headed. Morgan has chosen to go for the lat-muscle option. This will mean that she will have surgery on her back and front! (where is she going to lay down?) They will wrap part of the lat-muscle around under her arm and roll it up to create a breast. It really is amazing...but still very major and very unnerving, for me anyway. I promise to write more about that as it happens.
Thank you all for checking the blog once again to see the update. I apologize for not writing more, but there isn't that much happening every single day. We appreciate you for staying interested in us and what we do. We love you for caring and praying for us. We feel the prayers and the many blessings you all bring into our lives. We were talking the other day about how difficult it would be to not have all of those blessings. What it would feel like to not have the strength of others with us every single day. Please know that it is not going unnoticed or unappreciated. We have some thank yous to write still, but please don't feel that what you do for us is overlooked or taken for granted. Some have prepared meals, written notes of encouragement, visited, brought treats and meals and gifts, or even generously donated money to our cause. Thank you, thank you and thank you!!!
Tuesday, March 1, 2011
Drains Finally Gone!
After five trips up to Huntsman in early morning rush hour traffic (bleh!) Morgan was finally able to have her last drain removed!!! She is free! (six weeks is a long time...) When we arrived the nurse took Morgan's pulse. She asked Morgan if she felt okay or if it felt like her heart was going to run out of her chest. I asked what her pulse was and she said 145. I was like...."no, her pulse...not her weight!" She said, "I know!"
The doctor came in all concerned with his head nurse and they retook her pulse by hand and it still was 122. They started murmering about things like EKG and "i-mac." Soon two more people came in and hooked Morgan up to the EKG which was fine, but her pulse was still 100. Been trying to upload a picture for this but for some reason it won't work....
She got a total of 30 cc's with a needle stuck straight into her chest. It found the right spot by using a magnet which lined up with a magnet that is in the port of her expander. It is all quite interesting. On March 1st, one week later, she received another 60 cc's.
We have about 4 more of these procedures planned, then we can begin her five weeks of radiation by the first of April. Some day, some way, I will get better at keeping everything up to date.
The doctor came in all concerned with his head nurse and they retook her pulse by hand and it still was 122. They started murmering about things like EKG and "i-mac." Soon two more people came in and hooked Morgan up to the EKG which was fine, but her pulse was still 100. Been trying to upload a picture for this but for some reason it won't work....
She got a total of 30 cc's with a needle stuck straight into her chest. It found the right spot by using a magnet which lined up with a magnet that is in the port of her expander. It is all quite interesting. On March 1st, one week later, she received another 60 cc's.
We have about 4 more of these procedures planned, then we can begin her five weeks of radiation by the first of April. Some day, some way, I will get better at keeping everything up to date.
Sunday, January 30, 2011
First Week at Home
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| Queen of the Remote! |
She is getting stronger every day and sometimes forgets her own limitations...but then she pays for it for the next few days. She is healing well and the doctors are impressed with her progress. We got a phone call about the pathologists report. They said that all of the tissue was benign! There were small spots of scar tissue found which the pathologist said was cancerous cells which were killed by the chemotherapy. The most interesting part is that they found the same type of results in the other breast as well. This could very well mean that if we hadn't done a "double/bi-lateral" mastectomy, then there could have been cancerous cells left in her other breast. It looks like after all of the crazy back-and-forth decisions...we were led to make the right decision!!! We are so grateful for the results!
Ten days after surgery two of Morgan's drains were removed. We need to get the other two out so she can begin the tissue expansion once a week for about six weeks. When that is over, she will have five weeks of radiation, two or three months to heal and then her reconstruction. Trust me: next time I won't leave the recovery room until I see the pump connected to her IV!!!!
Morgan still has her up days as well as her down days...but no one could be more proud of their little girl! Love you sweetie!!!
Our Hospital Stay
Morgan was in a lot of pain when she was rolled into her room. It was pretty bad and we all wondered where her pain pump was. Johnny and I had talked to her surgeon that morning before surgery to make sure that her pain would be kept under control. I knew how much it was going to hurt and I was really scared for her. Her doctor had explained in detail about her pump so it was a mystery why she didn't have one connected already. The nurse said that she couldn't find a written order for it and that she didn't think they normally put a pump on pediatric patients.
They tried some IV meds and also some oral meds but nothing seemed to work. She was in so much pain and it was awful to watch. Finally, after making some phone calls and doing what we call, "pulling a Shirley MacLaine," her other surgeon happened to walk down the hall and I grabbed him to help. He couldn't believe that she didn't have a pain pump. When he looked it up on the computer, they had just put in the order. After much too long, they finally hooked her up and she was able to control the medication.
It wasn't strong enough....I had left for the night to get some sleep and Johnny was there with Morgan alone. (We all had rooms at the Marriott by the hospital so we had a 5 minute commute) The original nurse decided to take off the pump and try oral and IV meds. Luckily she had a good nurse who kept up with her pain and gave her shots as needed. When I arrived in the morning and found out what had happened, (as Morgan says) "I flipped a biz!"...probably to the wrong person, but the mama bear in me came out. The pump came back...with a stronger medication. YAY!!!
Other than that first 24 hours....we feel really good about the hospital stay. We, the family, were treated very well at Huntsman. The rooms are larger and have a double size couch pull-out. There isn't a standard meal delivery, but it is more like room service. You call in and order whatever you want from the menu. If it is for the patient, it is included in the hospital bill...if it is for family and/or friends you pay with a credit card. But, trust me, it is the best hospital food you'll ever eat!
There were several of us who stayed with Morgan. Johnny and I took shifts so that one of us was with her at all times. She was up to the bathroom on her own within the first hour and had to take seven different walks around the loop each day. Morgan's friends came up to watch a movie and take a walk down to the second floor to see the amazing 24,000-piece puzzle on the wall. (If you are ever up there, go see it and read the wall plaque!)
Morgan's surgery was on Friday and we brought her home on Monday with four drains attached. She begged me all the way home not to brake fast or turn too sharp. We made it in one piece and boy, are we glad to be home!!!
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| BEFORE PUMP |
They tried some IV meds and also some oral meds but nothing seemed to work. She was in so much pain and it was awful to watch. Finally, after making some phone calls and doing what we call, "pulling a Shirley MacLaine," her other surgeon happened to walk down the hall and I grabbed him to help. He couldn't believe that she didn't have a pain pump. When he looked it up on the computer, they had just put in the order. After much too long, they finally hooked her up and she was able to control the medication.
 |
| AFTER PUMP |
Other than that first 24 hours....we feel really good about the hospital stay. We, the family, were treated very well at Huntsman. The rooms are larger and have a double size couch pull-out. There isn't a standard meal delivery, but it is more like room service. You call in and order whatever you want from the menu. If it is for the patient, it is included in the hospital bill...if it is for family and/or friends you pay with a credit card. But, trust me, it is the best hospital food you'll ever eat!
There were several of us who stayed with Morgan. Johnny and I took shifts so that one of us was with her at all times. She was up to the bathroom on her own within the first hour and had to take seven different walks around the loop each day. Morgan's friends came up to watch a movie and take a walk down to the second floor to see the amazing 24,000-piece puzzle on the wall. (If you are ever up there, go see it and read the wall plaque!)
Morgan's surgery was on Friday and we brought her home on Monday with four drains attached. She begged me all the way home not to brake fast or turn too sharp. We made it in one piece and boy, are we glad to be home!!!
Sunday, January 16, 2011
Surgery 1/14/11
We arrived at Huntsman at 7 am...Morgan, myself, and Morgan's dad Johnny. We went into a small pre-op room and Morgan changed into a gown & socks. After the usual urine sample, vitals, and consent forms; Morgan was taken down to another, separate area for an injection. The shot was given directly into her right breast and made of nuclear material so the Dr. could locate the cancerous margin left from her original tumor. I wasn't able to go with her, but Morgan said that the first shot was a small needle used to deaden the area and then the nuclear shot had quite a long needle to reach clear inside. It must have been okay because she didn't act like it was any big deal when she returned to the room.
When the nurse came into the room and listened to her heartrate, it was going quite fast....and she said, "Might we be making you nervous?" But the rules of the room were very specific...."Whatever makes Morgan happy!" The head OR Nurse, Kitty, told Morgan that she would be there to watch over everything....to just think of her as Morgan's Guardian Angel.
Dr. Neumayer returned and drew surgical reference marks on Morgan's chest with a purple marker. Great set of tattoos! :) The IV was put in at 9:50 which Morgan said, "tastes weird." At the last second, she injected something to relax her and her head fell back and hit the pillow almost immediately. We kissed her goodbye and they rolled her down the hallway at 10:00.
Johnny and I went upstairs to have some breakfast. My phone rang at 11:00 and it was a nurse in the OR. She just wanted to tell me that they had started sugery, Morgan was doing great, and not to worry. We received another call at 12:00...axillary (under-arm) lymph nodes were negative!!!! Dr. Neumayer would be finished with her part of the surgery in about 45 minutes. They called again just before 1:00 to tell us that three nodes were actually removed and Morgan was doing great. Dr. Neumayer came out around 12:30 to see us. She said that Morgan did great and that she has "amazing tissue!" She mentioned that Dr. Agarwol had about 1 1/2 hours per side so we were planning to wait another 2 hours at least. At 2:00 (an hour earlier than expected) Dr Agarwol came out and said that everything went as expected and she would be in recovery for about an hour.
I had asked about every person we saw if they would allow me to see Morgan in the recovery room. It is pretty much standard practice that no one is allowed back there to preserve the other patients' privacy. But, since Morgan is young, and she had woken up from the lumpectomy very upsent looking for me, they decided to make it happen. When I arrived back there, she began to cry and told me that she always needed her momma and that I couldn't leave her. She wanted to know if the other girl, who was supposed to be after her, was in surgery yet. I said that she was in there right now....she said, "Too bad, I need to warn her. It hurts so bad. She needs to know it feels like an elephant is sitting on my chest." I stayed back there with her for a while, but once she was ready to go to her room, I left to get the family up to her room for when she got there. We made it!!! She is cancer-free and the worst is over!!!! Love that girl!!!
When the nurse came into the room and listened to her heartrate, it was going quite fast....and she said, "Might we be making you nervous?" But the rules of the room were very specific...."Whatever makes Morgan happy!" The head OR Nurse, Kitty, told Morgan that she would be there to watch over everything....to just think of her as Morgan's Guardian Angel.
Dr. Neumayer returned and drew surgical reference marks on Morgan's chest with a purple marker. Great set of tattoos! :) The IV was put in at 9:50 which Morgan said, "tastes weird." At the last second, she injected something to relax her and her head fell back and hit the pillow almost immediately. We kissed her goodbye and they rolled her down the hallway at 10:00.
Johnny and I went upstairs to have some breakfast. My phone rang at 11:00 and it was a nurse in the OR. She just wanted to tell me that they had started sugery, Morgan was doing great, and not to worry. We received another call at 12:00...axillary (under-arm) lymph nodes were negative!!!! Dr. Neumayer would be finished with her part of the surgery in about 45 minutes. They called again just before 1:00 to tell us that three nodes were actually removed and Morgan was doing great. Dr. Neumayer came out around 12:30 to see us. She said that Morgan did great and that she has "amazing tissue!" She mentioned that Dr. Agarwol had about 1 1/2 hours per side so we were planning to wait another 2 hours at least. At 2:00 (an hour earlier than expected) Dr Agarwol came out and said that everything went as expected and she would be in recovery for about an hour.
I had asked about every person we saw if they would allow me to see Morgan in the recovery room. It is pretty much standard practice that no one is allowed back there to preserve the other patients' privacy. But, since Morgan is young, and she had woken up from the lumpectomy very upsent looking for me, they decided to make it happen. When I arrived back there, she began to cry and told me that she always needed her momma and that I couldn't leave her. She wanted to know if the other girl, who was supposed to be after her, was in surgery yet. I said that she was in there right now....she said, "Too bad, I need to warn her. It hurts so bad. She needs to know it feels like an elephant is sitting on my chest." I stayed back there with her for a while, but once she was ready to go to her room, I left to get the family up to her room for when she got there. We made it!!! She is cancer-free and the worst is over!!!! Love that girl!!!
Thursday, January 13, 2011
PET Scan Results!! Good News!!!
Hey everybody....it is a GREAT day!!!! Morgan is now cancer-free!!!
Yesterday, Morgan had to go without any sugar or caffeine for about 18 hours before her scan. We arrived at 9:30 am and once they checked her blood sugar levels, Morgan had to drink a large glass of lemon Crystal Light with iodine...yummy!!! I even got a sip to see how great it tastes...NOT! While she was drinking away, they inserted an IV into her arm.
Then, as the technician calls it, Morgan got to go into "Time Out." This is a small room with a comfy laid-back chair, in which she gets to just lay there and rest for about an hour after getting an injection of a Radioactive Isotope. I wanted to get a picture of her in the room, so I had to hurry before the shot because they didn't want me to come in contact with the radioactive waves she would be emitting..j/k.
When I saw the picture...I just knew I had to share, because this is just typical Morgan style. But I made her smile and give me a nice shot to share too! (We really weren't trying to kill her in the back room, however this treatment would make her light up and not get through any airport security scanner!)
Once I left the "time out" room, she got the injection and turned on her ipod to relax for a little bit over an hour. Then they took her into another room with the CT Scanner, turned the music up really loud (she burned her own cd with a "PET Scan Mix"), and got strapped in for the ride. The scan lasted about 30 minutes and then they gave her the IV solution and she had a chest CT in the same machine.
By the time she came wandering out into the waiting room...she was a little dazed and confused. Last time they had let me go into the scanning room with her. I remember she was very wobbly trying to get re-dressed so I really wonder how she made it this time. She was starving since she hadn't really eaten for 24 hours so we grabbed a taco at Taco Time with Kaylee and she went home to sleep it off!! Now the waiting began....
We went into Dr. Beck's office on Wednesday at 3:30 to get the results. Some of you may now recognize our doctor as she was on KSL Channel 5 News the other night in the story about Utah Attorney General, Mark Shurtleff and his fight with colon cancer.
At first, we weren't sure what to expect because Dr. Beck's demeanor was a bit deceiving. Finally, she started talking about the CT scan and said that it was.....fine. (just like that with the big pause and no emotional whoopee!) Of course we all gave a little scream. Then she went to the PET scan and said that it all looked....normal. (again like it was exactly what we were expecting...) Johnny was on the speaker phone and Dr. Beck told him we were dancing around like Mexican Jumping Beans!!! p.s. there was a little bit of "uptake" in her nasal region, but that was due to her stuffy nose...;D
This is the GREATEST news!!! Some of you don't know many of the details, but we were told that if the cancer had spread to anywhere away from the breast and internal mammary node areas, then it would be basically incurable. We would do everything we could to prolong and sustain her life, but that it would eventually take her.
It has been a long and arduous journey. We don't take any moments we have for granted. Morgan and I have a relationship that has grown leaps and bounds. I wouldn't recommend anyone have to go through this, but there have definitely been some wonderful blessings poured out among us. We have just the best time together and we ARE together....all the time it seems! I wouldn't trade that part for anything!
So tomorrow we have a couple of doctor's appointments to go to, and then a family dinner with her dad. Hopefully we can all get a good night's rest before our new leg of the journey begins. We won't know the exact time of her surgery until Thursday afternoon, but we will be at Huntsman Medical Center for at least two to three nights. Morgan is so cute. When she had her surgery at Primary Children's Medical Center for her Adrenal Tumor, I had them trade out the crib for a twin-size bed because it was easier for me to keep her in the bed and not all twisted up in all of the tubing if I just laid in the bed and slept with her each night. So, she told me that is what she wants me to do this weekend.....we'll see. She may want the whole bed to herself with no one even touching her after this surgery is over! I'll keep you posted! I'll probably get kicked to the couch!
Yesterday, Morgan had to go without any sugar or caffeine for about 18 hours before her scan. We arrived at 9:30 am and once they checked her blood sugar levels, Morgan had to drink a large glass of lemon Crystal Light with iodine...yummy!!! I even got a sip to see how great it tastes...NOT! While she was drinking away, they inserted an IV into her arm.
Then, as the technician calls it, Morgan got to go into "Time Out." This is a small room with a comfy laid-back chair, in which she gets to just lay there and rest for about an hour after getting an injection of a Radioactive Isotope. I wanted to get a picture of her in the room, so I had to hurry before the shot because they didn't want me to come in contact with the radioactive waves she would be emitting..j/k.
When I saw the picture...I just knew I had to share, because this is just typical Morgan style. But I made her smile and give me a nice shot to share too! (We really weren't trying to kill her in the back room, however this treatment would make her light up and not get through any airport security scanner!)
Once I left the "time out" room, she got the injection and turned on her ipod to relax for a little bit over an hour. Then they took her into another room with the CT Scanner, turned the music up really loud (she burned her own cd with a "PET Scan Mix"), and got strapped in for the ride. The scan lasted about 30 minutes and then they gave her the IV solution and she had a chest CT in the same machine.
By the time she came wandering out into the waiting room...she was a little dazed and confused. Last time they had let me go into the scanning room with her. I remember she was very wobbly trying to get re-dressed so I really wonder how she made it this time. She was starving since she hadn't really eaten for 24 hours so we grabbed a taco at Taco Time with Kaylee and she went home to sleep it off!! Now the waiting began....
We went into Dr. Beck's office on Wednesday at 3:30 to get the results. Some of you may now recognize our doctor as she was on KSL Channel 5 News the other night in the story about Utah Attorney General, Mark Shurtleff and his fight with colon cancer.
At first, we weren't sure what to expect because Dr. Beck's demeanor was a bit deceiving. Finally, she started talking about the CT scan and said that it was.....fine. (just like that with the big pause and no emotional whoopee!) Of course we all gave a little scream. Then she went to the PET scan and said that it all looked....normal. (again like it was exactly what we were expecting...) Johnny was on the speaker phone and Dr. Beck told him we were dancing around like Mexican Jumping Beans!!! p.s. there was a little bit of "uptake" in her nasal region, but that was due to her stuffy nose...;D
This is the GREATEST news!!! Some of you don't know many of the details, but we were told that if the cancer had spread to anywhere away from the breast and internal mammary node areas, then it would be basically incurable. We would do everything we could to prolong and sustain her life, but that it would eventually take her.
It has been a long and arduous journey. We don't take any moments we have for granted. Morgan and I have a relationship that has grown leaps and bounds. I wouldn't recommend anyone have to go through this, but there have definitely been some wonderful blessings poured out among us. We have just the best time together and we ARE together....all the time it seems! I wouldn't trade that part for anything!
So tomorrow we have a couple of doctor's appointments to go to, and then a family dinner with her dad. Hopefully we can all get a good night's rest before our new leg of the journey begins. We won't know the exact time of her surgery until Thursday afternoon, but we will be at Huntsman Medical Center for at least two to three nights. Morgan is so cute. When she had her surgery at Primary Children's Medical Center for her Adrenal Tumor, I had them trade out the crib for a twin-size bed because it was easier for me to keep her in the bed and not all twisted up in all of the tubing if I just laid in the bed and slept with her each night. So, she told me that is what she wants me to do this weekend.....we'll see. She may want the whole bed to herself with no one even touching her after this surgery is over! I'll keep you posted! I'll probably get kicked to the couch!
Monday, January 10, 2011
PET Scan Tomorrow
Tomorrow, Tuesday the 11th, Morgan will have another PET Scan to see how well the Chemotherapy treatments worked on her cancer cells. Our appointment is at 9:30 in the morning. It is supposed to take about 2 - 2 1/2 hours. We won't get the results until our Wednesday afternoon appointment with the oncologist, Dr. Beck.
Thursday we have a couple more appointments and then Friday morning we will check in to Huntsman Medical Center for her surgery. There is one other young lady having the same surgery as Morgan on the same day. We were told that she will most likely be spending 2-3 nights in the hospital.
I'll let you know more as things progress. For right now just keep Morgan in your thoughts and prayers....and wear your PINK!!!
Thursday we have a couple more appointments and then Friday morning we will check in to Huntsman Medical Center for her surgery. There is one other young lady having the same surgery as Morgan on the same day. We were told that she will most likely be spending 2-3 nights in the hospital.
I'll let you know more as things progress. For right now just keep Morgan in your thoughts and prayers....and wear your PINK!!!
Wednesday, December 29, 2010
Snowboarding at Snowbird
So yesterday Morgan went with her friend snowboarding at Snowbird. She was really excited to go as it has been a really long time since she has been boarding and it was to be a great day out of the house. Of course, I was worried that she would overdo it and not feel well. I made sure she took along her little box of medication just in case she got nauseous or began to really hurt.
She left at 7 am and I didn't hear much all day. The house phone rang around noon and I could hear her boarding and talking....she bum-called me! I started yelling her name into the phone until she yelled back, "what?" It was so funny cuz apparently she looked up the mountain to see who was yelling at her. We talked while she was standing on top of the mountain and she was doing great and having fun.
I spoke to her again around 6:30 to see when she would be home. She was back at her friend's house eating dinner and sounded great...but said there was a story she needed to tell me about what happened right after I had talked to her on the mountain....well, apparently her bindings broke. She struggled for a while, walked some, and finally sat down as she could do no more. There is much more to the story, but you'll have to talk to her for the details!
A first-aid guy skied by and asked if they needed help. She explained that she had just had chemo during the last week and was exhausted. He called another guy to come help, they strapped her in the toboggan, and pulled her down the hill....they called it a "courtesy ride." She said it was awesome! The ride was smooth and they were skiing so fast that at one turn she thought she was going to flip out of the sled. She tried to sit up as a reflex but couldn't move since she was all strapped in tight. The took her all the way down into the "plaza" where the shops are and everyone was staring at her. She climbed out of the sled and then had to wait for her friends to make it down the mountain to her. Now, that would have been a strange sight!
WOW!!! I guess what I don't know really doesn't hurt me! Good thing I didn't find out what was going on until after it was all over and she was home safe and sound.
Morgan had an amazing day and said the weather was perfect. However, she was so sore when she got home that she couldn't move. When I came home from the store, I found her in her bedroom flat on the floor. I was climbing over her trying to make her bed while she told me about her day. I wanted her to move over so I wouldn't accidentally stand on her head, but she couldn't even do that. She said it was worth it. I know that today she will be paying for it....but she hasn't got out of bed yet! I'll keep ya posted! Love that girl!!! NEVER a dull moment!
She left at 7 am and I didn't hear much all day. The house phone rang around noon and I could hear her boarding and talking....she bum-called me! I started yelling her name into the phone until she yelled back, "what?" It was so funny cuz apparently she looked up the mountain to see who was yelling at her. We talked while she was standing on top of the mountain and she was doing great and having fun.
I spoke to her again around 6:30 to see when she would be home. She was back at her friend's house eating dinner and sounded great...but said there was a story she needed to tell me about what happened right after I had talked to her on the mountain....well, apparently her bindings broke. She struggled for a while, walked some, and finally sat down as she could do no more. There is much more to the story, but you'll have to talk to her for the details!
A first-aid guy skied by and asked if they needed help. She explained that she had just had chemo during the last week and was exhausted. He called another guy to come help, they strapped her in the toboggan, and pulled her down the hill....they called it a "courtesy ride." She said it was awesome! The ride was smooth and they were skiing so fast that at one turn she thought she was going to flip out of the sled. She tried to sit up as a reflex but couldn't move since she was all strapped in tight. The took her all the way down into the "plaza" where the shops are and everyone was staring at her. She climbed out of the sled and then had to wait for her friends to make it down the mountain to her. Now, that would have been a strange sight!
WOW!!! I guess what I don't know really doesn't hurt me! Good thing I didn't find out what was going on until after it was all over and she was home safe and sound.
Morgan had an amazing day and said the weather was perfect. However, she was so sore when she got home that she couldn't move. When I came home from the store, I found her in her bedroom flat on the floor. I was climbing over her trying to make her bed while she told me about her day. I wanted her to move over so I wouldn't accidentally stand on her head, but she couldn't even do that. She said it was worth it. I know that today she will be paying for it....but she hasn't got out of bed yet! I'll keep ya posted! Love that girl!!! NEVER a dull moment!
Walt Disney World!!!
Morgan was able to go to Florida with her dad & Crystal and Crystal's family during December. She left on the 9th to go to Idaho and they flew out on the 10th to Denver and then Orlando. She had a blast going to DisneyWorld, Universal Studios, Animal Kingdom, and Sea World. I was worried about her being able to get around and not wear herself out...not to worry! They rented a wheelchair so she could be pushed around the parks.
I figured that the wheelchair would give her the opportunity to go to the front of the lines. When we had gone to Six Flags with Riley as a baby, they had let us in a different line which was used for those who needed a wheelchair. We would go to the very front and do a "baby swap." So, I texted Morgan and asked her if she was able to skip the lines and she said...."a girl's gotta do..." :)
Later I found out that on the first day she was wearing her wig and looked like a young healthy girl so people didn't really let them go ahead as much. Morgan said that anyone could rent a wheelchair and so the next day she wore just her hat. Also, she said that she was tired of holding her wig on during the rides. :) People treated her a little differently...which is interesting just on its own. Then the next day she went with nothing on her head - completely bald - and all of a sudden people were getting out of her way, being super kind, and little kids were staring at her. :) She said that all of the Disney Characters were coming up and giving her hugs and high fives. (she ended up giving the little kids funny faces!)
She had an awesome trip and came home to me on the 19th exhausted and sore. Just in time to sleep for a day before getting her last chemo treatment! She and I have been practically hooked at the hip since the end of August. I cried as she drove away to go on her trip. I can't believe how much I missed her during her time away. I am so excited to have her home again and get rested up for her major surgery next month. She is so funny and full of so much crazy information that comes out at the most random moments! Morgan is certainly one of the supreme joys in my life!!
I figured that the wheelchair would give her the opportunity to go to the front of the lines. When we had gone to Six Flags with Riley as a baby, they had let us in a different line which was used for those who needed a wheelchair. We would go to the very front and do a "baby swap." So, I texted Morgan and asked her if she was able to skip the lines and she said...."a girl's gotta do..." :)
Later I found out that on the first day she was wearing her wig and looked like a young healthy girl so people didn't really let them go ahead as much. Morgan said that anyone could rent a wheelchair and so the next day she wore just her hat. Also, she said that she was tired of holding her wig on during the rides. :) People treated her a little differently...which is interesting just on its own. Then the next day she went with nothing on her head - completely bald - and all of a sudden people were getting out of her way, being super kind, and little kids were staring at her. :) She said that all of the Disney Characters were coming up and giving her hugs and high fives. (she ended up giving the little kids funny faces!)
She had an awesome trip and came home to me on the 19th exhausted and sore. Just in time to sleep for a day before getting her last chemo treatment! She and I have been practically hooked at the hip since the end of August. I cried as she drove away to go on her trip. I can't believe how much I missed her during her time away. I am so excited to have her home again and get rested up for her major surgery next month. She is so funny and full of so much crazy information that comes out at the most random moments! Morgan is certainly one of the supreme joys in my life!!
Sunday, December 26, 2010
No More Chemo!!!
Tuesday, December 21st, was Morgan's LAST chemo treatment!!! She did really well without any reactions. When it was over, we were walking out of the treatment room and her nurse met her with a bottle of sparkling apple cider....just like champagne to celebrate. Then as we walked down the hall she was hugged by another nurse and the doctor each giving her congratulatory hugs! It was kinda fun!!
Morgan was hungry so we stopped at In 'n Out and then came home. She seemed to feel pretty well and had a good night. Wednesday she wanted to go to school for the SilverRush Assembly, then to get her last shot of Neulasta after that. By bedtime she was starting to feel achy and tired. Thursday morning Morgan woke up... and said that it was the first day she wished that she hadn't woken up! She was so sore and could barely move. She laid around all day and felt worse than she had probably the whole time! I think she just hadn't had the time to rest up for this last treatment, plus she had kind of pushed it the day before.
Friday was a bad day as well....everything hurt. Everytime I even touched her she screamed, "Ouch!" She laid on the couch and observed while we built gingerbread houses and played games. I felt so bad, I had nothing that I could do for her. We went to a family Christmas party and she did a pretty good job of participating, but was still very sore...it hurt each time someone hugged her or bumped into her.
Saturday morning came early....6 a m! We had to be finished with presents by 9 am to get Kylee and Kevin to the airport. It was a much better day as far as pain and nausea go. We went to the movie as a family and she watched some movies at home. I can tell she is feeling better just by listening to her talk and even joke around. We are so excited to think that her last "bad chemo day" is over!!!
Right now the next appointment on our list is Jan 11th when she will have a PET Scan to see how well the chemo worked on killing the cancer and keeping it from spreading. We will meet the next day with her oncologist to get the results and then two days later on the 14th she will have her surgery up at Huntsman!!
Happy Holidays and best wishes to all of you!!! Thanks for the meals, the prayers, support and love!! We can feel your support and couldn't do it without you!!!
Morgan was hungry so we stopped at In 'n Out and then came home. She seemed to feel pretty well and had a good night. Wednesday she wanted to go to school for the SilverRush Assembly, then to get her last shot of Neulasta after that. By bedtime she was starting to feel achy and tired. Thursday morning Morgan woke up... and said that it was the first day she wished that she hadn't woken up! She was so sore and could barely move. She laid around all day and felt worse than she had probably the whole time! I think she just hadn't had the time to rest up for this last treatment, plus she had kind of pushed it the day before.
Friday was a bad day as well....everything hurt. Everytime I even touched her she screamed, "Ouch!" She laid on the couch and observed while we built gingerbread houses and played games. I felt so bad, I had nothing that I could do for her. We went to a family Christmas party and she did a pretty good job of participating, but was still very sore...it hurt each time someone hugged her or bumped into her.
Saturday morning came early....6 a m! We had to be finished with presents by 9 am to get Kylee and Kevin to the airport. It was a much better day as far as pain and nausea go. We went to the movie as a family and she watched some movies at home. I can tell she is feeling better just by listening to her talk and even joke around. We are so excited to think that her last "bad chemo day" is over!!!
Right now the next appointment on our list is Jan 11th when she will have a PET Scan to see how well the chemo worked on killing the cancer and keeping it from spreading. We will meet the next day with her oncologist to get the results and then two days later on the 14th she will have her surgery up at Huntsman!!
Happy Holidays and best wishes to all of you!!! Thanks for the meals, the prayers, support and love!! We can feel your support and couldn't do it without you!!!
Thursday, December 9, 2010
Update
OK so I know I need to be better at keeping Morgan's progress up-to-date...sorry for the delay. This will be a long and detailed entry since so much has been going on....sorry again!
Morgan underwent her 5th round of chemo on November 30th. She did really well with no obvious reaction during the treatment. I never thought it would ever feel "routine" but it is just something we do. We sit and talk or she reads or watches a movie. We have made some good friends at the center and almost look forward to seeing them each time.
The day after, Morgan had her Neulasta shot and then we headed up to Huntsman for a family meeting with her treatment team to make some final decisions on her upcoming surgery, radiation, and reconstruction. It has seemed like we were riding a rollercoaster just to get to this point. The doctors know there are different options, but they haven't been sure about how to apply them to such a young patient. They have told us that Morgan is the ONLY 16 year old patient with triple negative breast cancer who also has been diagnosed with Li Fraumeni Syndrome so there aren't any previous cases to refer to. We are basically breaking new ground with her treatment and we want to do what is best.
One large issue is radiation. In order to kill the current cancer (which is the most life-threatening for Morgan) it is mandatory for her to undergo radiation due to the internal mammary lymph nodes under her breast bone which tested positive on her PET scan. The hope is that the chemo has completely killed the cancer, but there is no way to know that until the 2nd PET scan scheduled for January 12th or 13th. The nodes cannot be removed, so the only way to truly "kill" them is to use radiation. The problem is that radiation is extremely dangerous for her Li-Fraumeni (p53 gene mutation) as radiation causes cancer. Also, the radiation will actually burn her skin and make the reconstruction problematic. Of course, we want to do everything we can to save her life and keep her healthy...so radiation will happen about six to eight weeks after her surgery on January 14th.
Another large issue is which type of surgery Morgan will have in January. Our choices were between a lumpectomy or mastectomy. Again, the one that is best for her current cancer, isn't necessarily what is best for her p53 condition. This is getting confusing about now....trust me, I know! We have all agreed that going through with the double mastectomy is the best option for saving her life....so that is what is planned....final answer! They will insert tissue expanders behind the pec muscle and expand them over a period of 6-8 weeks followed by radiation.
If we had gone with the lumpectomy, she would have six full weeks of radiation M-F = 30 treatments. But since she is having the other surgery, she should only need five weeks M-F = 25 treatments....LESS radiation (which is a good thing). When it is over, she will need to heal for about two to three months...then she will have reconstructive surgery. We decided to try implants prior to going with the Latissimus Dorsi reconstruction. We can always use that as a second option if the implants don't work right. Much of this will depend on how well her skin and tissue heals from the radiation. If she doesn't heal as well, the plan may change.
Morgan's dad was tested for her p53 and his blood test just came back negative. Since mine was also negative, it is looking more and more like her mutation was just a natural fluke...one that can now be passed on. Just so that we can know for sure, her genetic counselor would like both of her siblings to be tested as well. There is a VERY small chance that the mutation came from my eggs, and it would be very neglectful to not find out and get them screened in order to prevent any of this from happening to one of them. If, heaven forbid, it does show up, then the next step would be to test my siblings and go from there. So many things that we have never even heard of are included in our genetic makeup. It would be so fascinating to study it if it weren't a part of my own family.
I know this is a lot of information with too many details for some, but Morgan and I both feel that it is important for others to learn from her experience. I had no idea this was all so complicated and if we can help even just one other person who may go through this or loves someone going through it, then we will feel like something worthwhile came from this crazy nightmare.
Morgan wanted to go to St. George after chemo so we went to visit G'ma Meikle for a few days. Morgan brought along her friend Gabby and we had a great time. Morgan slept a lot and rested up for the next week of school. I feel like so much of the sickness and bad days are spent within the walls of our home, that it is a wonderful break just to get some different scenery even if we just sit around and do nothing.
We went to her 6-month check-up with her pediatrician. She hasn't seen him since all of this started and he was impressed with how well she looks. Like every other doctor we've seen or talked to, he was amazed that she actually has breast cancer at 16. She is his first (and probably last) patient with it. She is definitely one for the record books. A few people have written in to Ellen DeGeneres to get on her show. That was Morgan's first request...so if any of you want to add to the mail....it may help!
Many have asked how she is doing in school. The days she is there, she gets her work done and turned in. Problem is, her attendance isn't so great. The school has been great to work with us and Morgan actually made the 1st quarter honor roll! She has some incompletes to make up from that quarter, but so far she is still on line for graduation with only one make-up packet! That is amazing considering she is in physics and pre-calculus. What a smart girl!
Morgan made it to school a few days this week but left today to go with her dad and family on a Christmas vacation to DisneyWorld. I think she needs the break to get her mind somewhere else, but it is really weird to be apart. We have practically been attached at the hip since August so I am sure it will be a challenge to get through the week....I miss her so much already! Of course I worry because I won't be reminding her to take her meds or watching the cues she gives about how she is feeling, but she will be with family who can take care of her...I am just being a mom. I just hope she doesn't overdo it and pay for it the next day.
Morgan doesn't want anyone to worry about her, especially family and close friends, and she always puts on a good face. I am so proud of how strong and brave she is. I have learned so much from watching her and listening to her. She has a great attitude and I am so blessed to be her mom.
The Fun Run has been postponed until January due to logistical issues....we will let you know when and where as soon as we know!
Her next (and last!) chemo is scheduled for December 21st! Don't forget to wear your pink!!!!
Morgan underwent her 5th round of chemo on November 30th. She did really well with no obvious reaction during the treatment. I never thought it would ever feel "routine" but it is just something we do. We sit and talk or she reads or watches a movie. We have made some good friends at the center and almost look forward to seeing them each time.
The day after, Morgan had her Neulasta shot and then we headed up to Huntsman for a family meeting with her treatment team to make some final decisions on her upcoming surgery, radiation, and reconstruction. It has seemed like we were riding a rollercoaster just to get to this point. The doctors know there are different options, but they haven't been sure about how to apply them to such a young patient. They have told us that Morgan is the ONLY 16 year old patient with triple negative breast cancer who also has been diagnosed with Li Fraumeni Syndrome so there aren't any previous cases to refer to. We are basically breaking new ground with her treatment and we want to do what is best.
One large issue is radiation. In order to kill the current cancer (which is the most life-threatening for Morgan) it is mandatory for her to undergo radiation due to the internal mammary lymph nodes under her breast bone which tested positive on her PET scan. The hope is that the chemo has completely killed the cancer, but there is no way to know that until the 2nd PET scan scheduled for January 12th or 13th. The nodes cannot be removed, so the only way to truly "kill" them is to use radiation. The problem is that radiation is extremely dangerous for her Li-Fraumeni (p53 gene mutation) as radiation causes cancer. Also, the radiation will actually burn her skin and make the reconstruction problematic. Of course, we want to do everything we can to save her life and keep her healthy...so radiation will happen about six to eight weeks after her surgery on January 14th.
Another large issue is which type of surgery Morgan will have in January. Our choices were between a lumpectomy or mastectomy. Again, the one that is best for her current cancer, isn't necessarily what is best for her p53 condition. This is getting confusing about now....trust me, I know! We have all agreed that going through with the double mastectomy is the best option for saving her life....so that is what is planned....final answer! They will insert tissue expanders behind the pec muscle and expand them over a period of 6-8 weeks followed by radiation.
If we had gone with the lumpectomy, she would have six full weeks of radiation M-F = 30 treatments. But since she is having the other surgery, she should only need five weeks M-F = 25 treatments....LESS radiation (which is a good thing). When it is over, she will need to heal for about two to three months...then she will have reconstructive surgery. We decided to try implants prior to going with the Latissimus Dorsi reconstruction. We can always use that as a second option if the implants don't work right. Much of this will depend on how well her skin and tissue heals from the radiation. If she doesn't heal as well, the plan may change.
Morgan's dad was tested for her p53 and his blood test just came back negative. Since mine was also negative, it is looking more and more like her mutation was just a natural fluke...one that can now be passed on. Just so that we can know for sure, her genetic counselor would like both of her siblings to be tested as well. There is a VERY small chance that the mutation came from my eggs, and it would be very neglectful to not find out and get them screened in order to prevent any of this from happening to one of them. If, heaven forbid, it does show up, then the next step would be to test my siblings and go from there. So many things that we have never even heard of are included in our genetic makeup. It would be so fascinating to study it if it weren't a part of my own family.
I know this is a lot of information with too many details for some, but Morgan and I both feel that it is important for others to learn from her experience. I had no idea this was all so complicated and if we can help even just one other person who may go through this or loves someone going through it, then we will feel like something worthwhile came from this crazy nightmare.
Morgan wanted to go to St. George after chemo so we went to visit G'ma Meikle for a few days. Morgan brought along her friend Gabby and we had a great time. Morgan slept a lot and rested up for the next week of school. I feel like so much of the sickness and bad days are spent within the walls of our home, that it is a wonderful break just to get some different scenery even if we just sit around and do nothing.
We went to her 6-month check-up with her pediatrician. She hasn't seen him since all of this started and he was impressed with how well she looks. Like every other doctor we've seen or talked to, he was amazed that she actually has breast cancer at 16. She is his first (and probably last) patient with it. She is definitely one for the record books. A few people have written in to Ellen DeGeneres to get on her show. That was Morgan's first request...so if any of you want to add to the mail....it may help!
Many have asked how she is doing in school. The days she is there, she gets her work done and turned in. Problem is, her attendance isn't so great. The school has been great to work with us and Morgan actually made the 1st quarter honor roll! She has some incompletes to make up from that quarter, but so far she is still on line for graduation with only one make-up packet! That is amazing considering she is in physics and pre-calculus. What a smart girl!
Morgan made it to school a few days this week but left today to go with her dad and family on a Christmas vacation to DisneyWorld. I think she needs the break to get her mind somewhere else, but it is really weird to be apart. We have practically been attached at the hip since August so I am sure it will be a challenge to get through the week....I miss her so much already! Of course I worry because I won't be reminding her to take her meds or watching the cues she gives about how she is feeling, but she will be with family who can take care of her...I am just being a mom. I just hope she doesn't overdo it and pay for it the next day.
Morgan doesn't want anyone to worry about her, especially family and close friends, and she always puts on a good face. I am so proud of how strong and brave she is. I have learned so much from watching her and listening to her. She has a great attitude and I am so blessed to be her mom.
The Fun Run has been postponed until January due to logistical issues....we will let you know when and where as soon as we know!
Her next (and last!) chemo is scheduled for December 21st! Don't forget to wear your pink!!!!
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