My 5yr old Dariel's Cancer Fight
Donation protected
This is a short story and update about our 5 year old son Dariel. He was diagnosed with pinealoblastoma; a cancerous tumor in the pineal region of the brain. After 9 surgeries, 1 month PICU, 5 months in Pediatric Oncology and roughly 5 sessions of continuing chemotherapy, here is an update:
Our son, Dariel Jiano Ramirez (Deej) turned five on April 19, 2015. Deej had been expressing headaches and falling asleep in school at times. Upon several pediatric visits, it was decided to go to the ER and advise of his situation. On May 31, 2015, we took our son to the emergency room at at Hackensack University Medical Center (HUMC) and a CT scan was performed. The scan uncovered a brain tumor causing hydrocephalous; a buildup of fluid in the skull creating pressure to his brain. The 1st surgery was immediately scheduled for Thursday, June 4th to pierce a hole in the ventricle, drain the cerebral spinal fluid (CSF) and relieve pressure. Being they will be in his head, an attempt was made to retrieve some tumor for biopsy.
The surgery was a success and 8 days later the biopsy report came back indicating there was not enough tumor retrieved for a definitive finding. A 2nd surgery was scheduled for Monday, June 15th to retrieve more tumor and facilitate a temporary external *cerebral shunt. (Cerebral shunts are commonly used to treat hydrocephalus, the swelling of the brain due to excess buildup of cerebrospinal fluid (CSF)) They removed 40% of the tumor and he was placed in the Pediatric Intensive Care Unit (PICU). PICU worked vigorously, through to the next day, attempting to stabilize him. Deej’s vitals were unstable indicating pressure was in the skull again, another hydrocephalous situation. An emergency surgery operation was performed Tuesday, June 16th. Another temporary external shunt was placed on the other side of his head, thus relieving the pressure and vitals were finally stable. Deej has 2 small containers on each side of the bed at ear level to acquire any excess CSF. A few days have passed with Deej still being unable to interact or speak and is unable to move the right side of his body. The Dr’s advise us it may take 4-6 weeks before we see changes in his condition. That week pathology confirms the tumor is *pinealoblastoma.
*Pineoblastoma (also pinealoblastoma) is a malignant tumor of the pineal gland. A pineoblastoma is a supratentorial midline **primitive neuroectodermal tumor.
**Primitive neuroectodermal tumor (PNET) is a malignant (cancerous) neural crest tumor.[1] It is a rare tumor, usually occurring in children and young adults under 25 years of age. The overall 5 year survival rate is about 53%.[2]
It gets its name because the majority of the cells in the tumor are derived from neuroectoderm, but have not developed and differentiated in the way a normal neuron would, and so the cells appear "primitive".
A 4th surgery is scheduled for Tuesday, June 23rd to install a *BROVIAC. Deej had been getting blood drawn daily for blood counts. The broviac catheter will administer the chemo and allow blood to be drawn comfortably.
* BROVIAC catheters are tunneled central venous catheters. The catheter is tunneled under the skin and placed in one of the veins just under the collarbone. The catheter is long enough to reach the large vein that enters the heart.
A 5th surgery is scheduled for Thursday, June 25th to remove the temporary shunts, install a permanent shunt and allow him to be moved from PICU to Oncology. At this time, Deej is still unable to speak, vaguely communicates, has extreme limited movement on his left side and is being fed through a feeding tube. Chemo is to be administered in 7 days, however upon drawing blood through the Broviac we notice the nurses having difficulty drawing blood. Deej’s body posture needs to be manipulated to draw blood fluidly. It is brought to the lead Dr’s attention and a 6th surgery is scheduled for Wednesday, July 1st to fix the kink in the line. The Chemo Therapy protocol called HeadStart II was then to be administered. A 7th surgery is scheduled for Tuesday, July 14th after the 1st round of chemo. This was for a seperate BROVIAC around his groin to remove stem cells on Monday, July 20th (a 5hr process) with a surgery scheduled for removal shortly after.
After 2 rounds of chemo, the tumor did not respond to the HeadStart II chemotherapy. We looked for other alternatives and found Columbia to have a protocol that was almost identical, except for one drug called bevacizumab (Avastin). We moved forward with Columbia’s protocol at HUMC. Although it’s not killing the tumor, we are hoping to limit the growth and give us time to find other alternatives.
Deej is now at home and we take him to physical therapy every Tuesday and he gets administered chemo every other Tuesday. He is still unable to walk independently, but his singing, love and happiness is really cherish-able. Our focus is assuring he is comfortable and happy until we find something to kill this tumor. Everyone he meets is so enthralled with his love and positive attitude.
Columbia may have a trial therapy, but we need to have a consultation. Our insurance only covers medical assistance in NJ and will not cover the consultation or any treatment, if available. We are also currently administering iHemp CBD 35.51% oil that have cancer killing agents.
https://livetobewell.com/shop/ihempcbd-gold-organic-cbd-hemp-oil-35-50-cbd/
His 7 year old sister, our daughter, Tianna is so helpful assisting us in keeping him entertained. She knows he has a cancerous tumor and that her grandmother, on the mother’s side, died of cancer not too long ago. She has great faith in him beating this. This has been and will be an extremely turbulent time for all of us. We thank everyone for their support.
The Lodi Fire Dept came by with Santa on a float to the house and sat with Deej. That is a memorable time and we look to attain many more positive and memorable moments. Anybody and everybody is more than welcome to come by for dinner, lunch or brunch and experience their happiness and love. They are really such special and loving children that’ll give you a lasting heartfelt experience.
The following descriptive letter is from the administering doctor to another practitioner at Columbia.
Thanks for your time in reading this. We thought we’d share for those who are curious and have shown concern. Thank you all so much.
Sincerely,
Deej’s Family.
----
December 18, 2015
Dr. James Garvin, M.D. Herbert Irving Pavilion
161 Fort Washington Avenue Floor: 7
New York, NY 10032
Re: Dariel Ramirez DOB: 4/19/2010
Dear Dr. Garvin,
Dariel Ramirez is a 5 year-old male with metastatic pinealoblastoma. He initially presented on May 31, 2015 with headaches and falling asleep in school. He was brought to the Hackensack University Medical Center Emergency room where at CT scan of the head revealed a large bithalamic lesion with obstructive hydrocephalus. An MRI confirmed this finding and also revealed metastatic spread of the tumor with a 7mm nodule located at the ventral medulla. Dariel underwent a craniotomy and small resection of the tumor. Pathology returned consistent with pinealoblastoma. Dariel had significant post-operative morbidity with an inability to speak and significant motor weakness that lasted for quite some time. He did eventually return to his normal mental status with the ability to speak and improvement in his motor strength after several weeks.
Due to Dariel's young age, treatment following the Headstart II protocol was recommended as there was significant concerns regarding the long-term side effects of radiation to his developing brain. Dariel received the first two cycles of Headstart II and tolerated the chemotherapy relatively well. An MRI scan done on 8/21/15 following the second cycle of therapy revealed that his primary tumor had increased in size and that he had new and worsening sites of metastatic disease. At this time, the parents were informed that the chemotherapy regimen had failed and that alternative treatments needed to be explored. The option of no additional therapy was also given to the family, who expressed a desire to continue treatment.
Dariel was then started on chemotherapy following COG protocol ACNS0821 with bevacizumab, temozolomide, and irinotecan. Dariel received the first cycle of treatment and tolerated the chemotherapy well. However, he did have prolonged pancytopenia following the initial cycle of treatment and his second cycle was delayed for one month. A bone marrow evaluation was done during this period and did not show any tumor infiltration of the marrow. An MRI done on 9/10/2015 following the first cycle of chemotherapy demonstrated a slight decrease of his primary tumor and resolution of his leptomeningeal enhancement. Dariel went on to receive two additional cycles of chemotherapy. His next MRI performed on 12/3/15 revealed further enlargement of his primary tumor along with significant growth of a nonenhancing nodule along the left posterior aspect of the cerebral aqueduct and fourth ventricle.
After discussing the MRI finding with the parents, they expressed a desire to continue chemotherapy with the hope that it would at least slow the rate of tumor growth. I explained that Dariel's tumor had now failed cytotoxic chemotherapy on two different occasions and that further treatment with temozolomide and irinotecan was unlikely to have much benefit and would expose Dariel to continued side effects from those medications.
The parents were given the option to continue Avastin alone as Dariel appeared to tolerate that medication well and it would not cause significant cytopenias, nausea, vomiting, diarrhea, and fatigue. The family agreed to this option. Dariel received his first dose of singleagent Avastin on 12/8/2015.
Overall, Dariel remains in good spirits and is talkative and lively. He has good use of his hands but is unable to walk, likely due to a combination of motor weakness from the tumor and deconditioning. He is receiving physical therapy. The parents are interested in exploring experimental therapies for Dariel at this time.
Thank you for your willingness to see Dariel and his family in consultation. Please do not hesitate to contact me with any questions.
Sincerely,
Derek Hanson, MD
Program Head, Pediatric Neuro-oncology
Institute for Pediatric Cancer and Blood Disorders
Joseph M. Sanzari Children's Hospital
Hackensack University Medical Center
30 Prospect Avenue
Hackensack, NJ 07601
Phone: [phone redacted]
Fax: [phone redacted]
Our son, Dariel Jiano Ramirez (Deej) turned five on April 19, 2015. Deej had been expressing headaches and falling asleep in school at times. Upon several pediatric visits, it was decided to go to the ER and advise of his situation. On May 31, 2015, we took our son to the emergency room at at Hackensack University Medical Center (HUMC) and a CT scan was performed. The scan uncovered a brain tumor causing hydrocephalous; a buildup of fluid in the skull creating pressure to his brain. The 1st surgery was immediately scheduled for Thursday, June 4th to pierce a hole in the ventricle, drain the cerebral spinal fluid (CSF) and relieve pressure. Being they will be in his head, an attempt was made to retrieve some tumor for biopsy.
The surgery was a success and 8 days later the biopsy report came back indicating there was not enough tumor retrieved for a definitive finding. A 2nd surgery was scheduled for Monday, June 15th to retrieve more tumor and facilitate a temporary external *cerebral shunt. (Cerebral shunts are commonly used to treat hydrocephalus, the swelling of the brain due to excess buildup of cerebrospinal fluid (CSF)) They removed 40% of the tumor and he was placed in the Pediatric Intensive Care Unit (PICU). PICU worked vigorously, through to the next day, attempting to stabilize him. Deej’s vitals were unstable indicating pressure was in the skull again, another hydrocephalous situation. An emergency surgery operation was performed Tuesday, June 16th. Another temporary external shunt was placed on the other side of his head, thus relieving the pressure and vitals were finally stable. Deej has 2 small containers on each side of the bed at ear level to acquire any excess CSF. A few days have passed with Deej still being unable to interact or speak and is unable to move the right side of his body. The Dr’s advise us it may take 4-6 weeks before we see changes in his condition. That week pathology confirms the tumor is *pinealoblastoma.
*Pineoblastoma (also pinealoblastoma) is a malignant tumor of the pineal gland. A pineoblastoma is a supratentorial midline **primitive neuroectodermal tumor.
**Primitive neuroectodermal tumor (PNET) is a malignant (cancerous) neural crest tumor.[1] It is a rare tumor, usually occurring in children and young adults under 25 years of age. The overall 5 year survival rate is about 53%.[2]
It gets its name because the majority of the cells in the tumor are derived from neuroectoderm, but have not developed and differentiated in the way a normal neuron would, and so the cells appear "primitive".
A 4th surgery is scheduled for Tuesday, June 23rd to install a *BROVIAC. Deej had been getting blood drawn daily for blood counts. The broviac catheter will administer the chemo and allow blood to be drawn comfortably.
* BROVIAC catheters are tunneled central venous catheters. The catheter is tunneled under the skin and placed in one of the veins just under the collarbone. The catheter is long enough to reach the large vein that enters the heart.
A 5th surgery is scheduled for Thursday, June 25th to remove the temporary shunts, install a permanent shunt and allow him to be moved from PICU to Oncology. At this time, Deej is still unable to speak, vaguely communicates, has extreme limited movement on his left side and is being fed through a feeding tube. Chemo is to be administered in 7 days, however upon drawing blood through the Broviac we notice the nurses having difficulty drawing blood. Deej’s body posture needs to be manipulated to draw blood fluidly. It is brought to the lead Dr’s attention and a 6th surgery is scheduled for Wednesday, July 1st to fix the kink in the line. The Chemo Therapy protocol called HeadStart II was then to be administered. A 7th surgery is scheduled for Tuesday, July 14th after the 1st round of chemo. This was for a seperate BROVIAC around his groin to remove stem cells on Monday, July 20th (a 5hr process) with a surgery scheduled for removal shortly after.
After 2 rounds of chemo, the tumor did not respond to the HeadStart II chemotherapy. We looked for other alternatives and found Columbia to have a protocol that was almost identical, except for one drug called bevacizumab (Avastin). We moved forward with Columbia’s protocol at HUMC. Although it’s not killing the tumor, we are hoping to limit the growth and give us time to find other alternatives.
Deej is now at home and we take him to physical therapy every Tuesday and he gets administered chemo every other Tuesday. He is still unable to walk independently, but his singing, love and happiness is really cherish-able. Our focus is assuring he is comfortable and happy until we find something to kill this tumor. Everyone he meets is so enthralled with his love and positive attitude.
Columbia may have a trial therapy, but we need to have a consultation. Our insurance only covers medical assistance in NJ and will not cover the consultation or any treatment, if available. We are also currently administering iHemp CBD 35.51% oil that have cancer killing agents.
https://livetobewell.com/shop/ihempcbd-gold-organic-cbd-hemp-oil-35-50-cbd/
His 7 year old sister, our daughter, Tianna is so helpful assisting us in keeping him entertained. She knows he has a cancerous tumor and that her grandmother, on the mother’s side, died of cancer not too long ago. She has great faith in him beating this. This has been and will be an extremely turbulent time for all of us. We thank everyone for their support.
The Lodi Fire Dept came by with Santa on a float to the house and sat with Deej. That is a memorable time and we look to attain many more positive and memorable moments. Anybody and everybody is more than welcome to come by for dinner, lunch or brunch and experience their happiness and love. They are really such special and loving children that’ll give you a lasting heartfelt experience.
The following descriptive letter is from the administering doctor to another practitioner at Columbia.
Thanks for your time in reading this. We thought we’d share for those who are curious and have shown concern. Thank you all so much.
Sincerely,
Deej’s Family.
----
December 18, 2015
Dr. James Garvin, M.D. Herbert Irving Pavilion
161 Fort Washington Avenue Floor: 7
New York, NY 10032
Re: Dariel Ramirez DOB: 4/19/2010
Dear Dr. Garvin,
Dariel Ramirez is a 5 year-old male with metastatic pinealoblastoma. He initially presented on May 31, 2015 with headaches and falling asleep in school. He was brought to the Hackensack University Medical Center Emergency room where at CT scan of the head revealed a large bithalamic lesion with obstructive hydrocephalus. An MRI confirmed this finding and also revealed metastatic spread of the tumor with a 7mm nodule located at the ventral medulla. Dariel underwent a craniotomy and small resection of the tumor. Pathology returned consistent with pinealoblastoma. Dariel had significant post-operative morbidity with an inability to speak and significant motor weakness that lasted for quite some time. He did eventually return to his normal mental status with the ability to speak and improvement in his motor strength after several weeks.
Due to Dariel's young age, treatment following the Headstart II protocol was recommended as there was significant concerns regarding the long-term side effects of radiation to his developing brain. Dariel received the first two cycles of Headstart II and tolerated the chemotherapy relatively well. An MRI scan done on 8/21/15 following the second cycle of therapy revealed that his primary tumor had increased in size and that he had new and worsening sites of metastatic disease. At this time, the parents were informed that the chemotherapy regimen had failed and that alternative treatments needed to be explored. The option of no additional therapy was also given to the family, who expressed a desire to continue treatment.
Dariel was then started on chemotherapy following COG protocol ACNS0821 with bevacizumab, temozolomide, and irinotecan. Dariel received the first cycle of treatment and tolerated the chemotherapy well. However, he did have prolonged pancytopenia following the initial cycle of treatment and his second cycle was delayed for one month. A bone marrow evaluation was done during this period and did not show any tumor infiltration of the marrow. An MRI done on 9/10/2015 following the first cycle of chemotherapy demonstrated a slight decrease of his primary tumor and resolution of his leptomeningeal enhancement. Dariel went on to receive two additional cycles of chemotherapy. His next MRI performed on 12/3/15 revealed further enlargement of his primary tumor along with significant growth of a nonenhancing nodule along the left posterior aspect of the cerebral aqueduct and fourth ventricle.
After discussing the MRI finding with the parents, they expressed a desire to continue chemotherapy with the hope that it would at least slow the rate of tumor growth. I explained that Dariel's tumor had now failed cytotoxic chemotherapy on two different occasions and that further treatment with temozolomide and irinotecan was unlikely to have much benefit and would expose Dariel to continued side effects from those medications.
The parents were given the option to continue Avastin alone as Dariel appeared to tolerate that medication well and it would not cause significant cytopenias, nausea, vomiting, diarrhea, and fatigue. The family agreed to this option. Dariel received his first dose of singleagent Avastin on 12/8/2015.
Overall, Dariel remains in good spirits and is talkative and lively. He has good use of his hands but is unable to walk, likely due to a combination of motor weakness from the tumor and deconditioning. He is receiving physical therapy. The parents are interested in exploring experimental therapies for Dariel at this time.
Thank you for your willingness to see Dariel and his family in consultation. Please do not hesitate to contact me with any questions.
Sincerely,
Derek Hanson, MD
Program Head, Pediatric Neuro-oncology
Institute for Pediatric Cancer and Blood Disorders
Joseph M. Sanzari Children's Hospital
Hackensack University Medical Center
30 Prospect Avenue
Hackensack, NJ 07601
Phone: [phone redacted]
Fax: [phone redacted]
Organizer
Allen Ramirez
Organizer
Lodi, NJ
