Final Expenses for Sammy
Donation protected
Hello,
I wanted to create this new page to help with some of the confusion. Apparently my last page had to many updates and a few were emailing me that they were confused as to where we were in this journey. So I am going to try to keep it short and summarize Sammy’s story from December 2007 up until today. We are extremely thankful to everyone that has supported us during this very difficult time. Our goal is to focus on Samantha's quality of life at this point.
Samantha is my 13 year old daughter that has been battling with Wilms tumor since she was 4 years old. After many rounds of chemo Sammy had a major surgery at the age of 5. She was in surgery over 8 hours with two surgeons. One removed her right kidney while the other did open heart surgery to remove the tumor that had grown up into her atrium and vena cava. She was then given more chemotherapy and radiation and was in remission in 2009. Praise God!
May 2013
Just 10 days shy of being in remission for 5 years Samantha’s cancer has returned. This time the tumor was on her kidney bed, wrapped itself around her liver and attached itself to her aorta. August of 2013 the tumor on her kidney bed was removed as well as 40% of her liver. When the surgeon attempted to remove what was on her aorta she began to bleed to death. He had to stop immediately and sew her up in order to save her life. Samantha had more chemo, radiation and even a stem cell transplant. They continued to monitor her via scans and there was no growth so we were all assuming it was dead tissue at this point. They felt comfortable to say she was in remission at this point.
May 2015
Routine scans show the mass has increased in size and now we have a new spot on her liver. They sent a piece of her tumor off for genetic testing and sent her file over to St. Jude for a second opinion. After several opinions from all around the country they started her on a combination of 4 drugs vincristine, temodar, irinotecan, and avastin.
September-December 2015
Samanthas older brother Ricardo was taken from us in a tragic motorcycle accident on September 4th and this changes everything. September 8th scans show Sammy is stable she feels he went to Heaven to ask for a miracle on her behalf. Sammy became very ill with c diff and was struggling with her weight so she had a gtube placed in her tummy for nightly feedings. Samantha has also developed neuropathy which is causing drop foot and pain in her calves. She can not walk or stand for long periods of time and loses her balance easily. She now has some really cool braces that help a lot. As we came up on her 8th round of chemo Sammy began saying she is tired of fighting and was refusing to take any more chemo. The doctors decreased her chemo and we began doing outpatient to make it easier on her. She was tolerating this new regimen very well.
March-April 2016
Scans show the mass has increased since September and Samantha is refusing any more rounds of chemo. Her doctors agree that we haven’t been very successful with this regimen. We knew with each recurrence this gets harder to fight as her body begins to become resistant to the chemo. We were told focus on quality of life. Samantha is demanding a second opinion from a surgeon she just wants it all surgurically removed. We went and saw a new surgeon even though all along we were told further surgery was not an option. After testing and review we were told that she would never make it through the surgery and that he would not risk killing her. He said there are way too many major blood vessels involved and that she would without a doubt bleed to death. So I asked what he thinks we should do and he agrees quality of life should be our number one priority.
May-June 2016
Sammy told the doctor that since surgery wasn't an option that she may consider taking the strong chemo again. My heart broke into a million pieces when he told her we were out of options. She has already had every chemo she could take for her type of cancer and they just weren't working anymore. He suggested she start taking the Nexavar inhibitor right away to help slow things down. She asked about St. Jude and if they had any experimental drugs.
He referred us to Children's Medical Center in Dallas for a second opinion and to discuss a new clinical trial. We went and they agree with everything our current oncologist has said and done. They then invited Samantha to take part in a new research study. It is ADVL1522, A phase 2 study of IMGN901 in children with relapsed or refractory Wilms tumor.
July- 2016
After six weeks of the experimental dugs and scans, unfortunatley we did not get the news we were hoping for today. The experimental drug did not even phase Sammy's cancer. Scans actually show a significant growth in the tumor in her kidney bed that is resting between her liver and her spine. The two small spots on her lungs 6 weeks ago have increased in size as well, along with multiple new spots.
Sammy took the news very well and asked a ton of questions. She said she knew it wasn't working but was hoping she was wrong.
August 5th 2016
We followed up with the oncologist and it seems it just keeps getting worse. At this time they do not have any open studies and we were told without any kind of treatment Sammy only has a few months left.
In about three weeks they will be opening a couple of new studies, but we are not sure if Sammy will qualify at this time or if she will agree. Both have never been given to someone with Wilms tumor so we have no idea if they will work. We were told chances are slim but its worth a try. As a parent I am so torn.. Do we keep fighting until the very end even though she could become very sick and get no relief, or so we leave it alone focus on quality of life and let God decide.
Upcoming studies:
The first one is Olaratumab-PDGFR. This is an antibody that they will combine with either Irinotecan or Isfosfamide chemotherapy. Sammy's body has actually become resistant to these two drugs but they are hoping the PDGFR will boost the one they choose . Sammy also had very bad side effects from both of these drugs so she is not very thrilled about trying this one.
The other is Pembrolizumab and we can only try this one if the tissue of her tumor has the PD-L1 protein. They will have to wait until the study opens to test the tissue. Cons of this one is 5 days inpatient to receive the drug and she can develop auto immune disease among many other permanent side effects.
Sammy handled the news very well on Friday even came home and told her dad and I that she didn't want to die, but she isn't scared of death. Later she even wrote out some specific wishes as far as her funeral goes. Definitely not something a mother wants to discuss with her child, but I have to keep an open mind here and respect her wishes.
Last night and today are a different story. She is very angry at God, me and the world right now . I don't blame her one bit because im just as angry, but we cant stay angry. I just don't know what to say or do to make her feel any better. Please keep us lifted in prayer. We really need a miracle here.
Our next appt is on the 26th we were told enjoy life during this small break.
I grieve for the childhood that was taken from her. I know God has a purpose in everything but some days more often than not im having a very hard time accepting this. I may never understand why but I am thankful for every precious moment God has and continues to give us with her.
Thank you for your continued Prayers, Love & Support!
Love,
Misty, Sammy & Family
I wanted to create this new page to help with some of the confusion. Apparently my last page had to many updates and a few were emailing me that they were confused as to where we were in this journey. So I am going to try to keep it short and summarize Sammy’s story from December 2007 up until today. We are extremely thankful to everyone that has supported us during this very difficult time. Our goal is to focus on Samantha's quality of life at this point.
Samantha is my 13 year old daughter that has been battling with Wilms tumor since she was 4 years old. After many rounds of chemo Sammy had a major surgery at the age of 5. She was in surgery over 8 hours with two surgeons. One removed her right kidney while the other did open heart surgery to remove the tumor that had grown up into her atrium and vena cava. She was then given more chemotherapy and radiation and was in remission in 2009. Praise God!
May 2013
Just 10 days shy of being in remission for 5 years Samantha’s cancer has returned. This time the tumor was on her kidney bed, wrapped itself around her liver and attached itself to her aorta. August of 2013 the tumor on her kidney bed was removed as well as 40% of her liver. When the surgeon attempted to remove what was on her aorta she began to bleed to death. He had to stop immediately and sew her up in order to save her life. Samantha had more chemo, radiation and even a stem cell transplant. They continued to monitor her via scans and there was no growth so we were all assuming it was dead tissue at this point. They felt comfortable to say she was in remission at this point.
May 2015
Routine scans show the mass has increased in size and now we have a new spot on her liver. They sent a piece of her tumor off for genetic testing and sent her file over to St. Jude for a second opinion. After several opinions from all around the country they started her on a combination of 4 drugs vincristine, temodar, irinotecan, and avastin.
September-December 2015
Samanthas older brother Ricardo was taken from us in a tragic motorcycle accident on September 4th and this changes everything. September 8th scans show Sammy is stable she feels he went to Heaven to ask for a miracle on her behalf. Sammy became very ill with c diff and was struggling with her weight so she had a gtube placed in her tummy for nightly feedings. Samantha has also developed neuropathy which is causing drop foot and pain in her calves. She can not walk or stand for long periods of time and loses her balance easily. She now has some really cool braces that help a lot. As we came up on her 8th round of chemo Sammy began saying she is tired of fighting and was refusing to take any more chemo. The doctors decreased her chemo and we began doing outpatient to make it easier on her. She was tolerating this new regimen very well.
March-April 2016
Scans show the mass has increased since September and Samantha is refusing any more rounds of chemo. Her doctors agree that we haven’t been very successful with this regimen. We knew with each recurrence this gets harder to fight as her body begins to become resistant to the chemo. We were told focus on quality of life. Samantha is demanding a second opinion from a surgeon she just wants it all surgurically removed. We went and saw a new surgeon even though all along we were told further surgery was not an option. After testing and review we were told that she would never make it through the surgery and that he would not risk killing her. He said there are way too many major blood vessels involved and that she would without a doubt bleed to death. So I asked what he thinks we should do and he agrees quality of life should be our number one priority.
May-June 2016
Sammy told the doctor that since surgery wasn't an option that she may consider taking the strong chemo again. My heart broke into a million pieces when he told her we were out of options. She has already had every chemo she could take for her type of cancer and they just weren't working anymore. He suggested she start taking the Nexavar inhibitor right away to help slow things down. She asked about St. Jude and if they had any experimental drugs.
He referred us to Children's Medical Center in Dallas for a second opinion and to discuss a new clinical trial. We went and they agree with everything our current oncologist has said and done. They then invited Samantha to take part in a new research study. It is ADVL1522, A phase 2 study of IMGN901 in children with relapsed or refractory Wilms tumor.
July- 2016
After six weeks of the experimental dugs and scans, unfortunatley we did not get the news we were hoping for today. The experimental drug did not even phase Sammy's cancer. Scans actually show a significant growth in the tumor in her kidney bed that is resting between her liver and her spine. The two small spots on her lungs 6 weeks ago have increased in size as well, along with multiple new spots.
Sammy took the news very well and asked a ton of questions. She said she knew it wasn't working but was hoping she was wrong.
August 5th 2016
We followed up with the oncologist and it seems it just keeps getting worse. At this time they do not have any open studies and we were told without any kind of treatment Sammy only has a few months left.
In about three weeks they will be opening a couple of new studies, but we are not sure if Sammy will qualify at this time or if she will agree. Both have never been given to someone with Wilms tumor so we have no idea if they will work. We were told chances are slim but its worth a try. As a parent I am so torn.. Do we keep fighting until the very end even though she could become very sick and get no relief, or so we leave it alone focus on quality of life and let God decide.
Upcoming studies:
The first one is Olaratumab-PDGFR. This is an antibody that they will combine with either Irinotecan or Isfosfamide chemotherapy. Sammy's body has actually become resistant to these two drugs but they are hoping the PDGFR will boost the one they choose . Sammy also had very bad side effects from both of these drugs so she is not very thrilled about trying this one.
The other is Pembrolizumab and we can only try this one if the tissue of her tumor has the PD-L1 protein. They will have to wait until the study opens to test the tissue. Cons of this one is 5 days inpatient to receive the drug and she can develop auto immune disease among many other permanent side effects.
Sammy handled the news very well on Friday even came home and told her dad and I that she didn't want to die, but she isn't scared of death. Later she even wrote out some specific wishes as far as her funeral goes. Definitely not something a mother wants to discuss with her child, but I have to keep an open mind here and respect her wishes.
Last night and today are a different story. She is very angry at God, me and the world right now . I don't blame her one bit because im just as angry, but we cant stay angry. I just don't know what to say or do to make her feel any better. Please keep us lifted in prayer. We really need a miracle here.
Our next appt is on the 26th we were told enjoy life during this small break.
I grieve for the childhood that was taken from her. I know God has a purpose in everything but some days more often than not im having a very hard time accepting this. I may never understand why but I am thankful for every precious moment God has and continues to give us with her.
Thank you for your continued Prayers, Love & Support!
Love,
Misty, Sammy & Family
Organizer
Misty Fantini Rangel
Organizer
Carrollton, TX
