This is what we know:
London is not a "textbook" case. Is this to her benefit or not, I am not sure.
Original tumor in adrenal gland favorable histology
T11 bone biopsy shows "active" neuroblastoma
T11 bone biopsy not enough to do pathology-not enough bone to "revisit" this site for a new sample. From what is known, usually what you have is what you have. So assuming favorable histology.
May have new site( or is it an old site-going away-trying to be optimistic and hopeful here) on C4-although within last month and 1/2 London has occasionally complained of pain here.
Abdominal mass is gone. Will one on spine just disappear also?
London is staged at a 4
London is healthy, has more than met milestones, and has been walking around with cancer in her body for a year(if not more) as of right now.
And we still would not know this if we hadn'd biopsied the site
Chemo: Would be treated at intermediate risk group.Would consist from 4-8 cycles. Each cycle consists of 21 days.
15-20% reoccurance of neuroblastoma in the future.
If reoccurance, comes back harder to treat, same histology, but chemo used prior would not work, would need intense treatment(High Risk-chemo, stem cell, immunotherapy)-London not eligible for MIBG therapy(where they attach radiation to isotope so neuroblastomas absorb this and it kills off neuroblastoma cells) because London's neuroblastomas did not absorb isotope MIBG scan for London was negative.
Side effects, although rare, are very scary Leukemia, other cancers, heart decay, and liver problems.
Could require blood transfusions, platelets, etc
If WBC (white blood cells low) increased risk for infection, any fevers need to be hospitalized.
Ok, so now it is school vacation, we are trying to have a fun, happy, "normal" week. -during the day. I am up with my husband at night reading, researching, praying for guidance which route to go. My husband is for the chemo. I am still going back and forth. I follow another little girls story on the computer who is currently" waiting and watching" . Then I come across 2 things that make up my mind. First, I read that " Sometimes neuroblasts remaining in very young infants continue to grow and then form tumors. Some even spread to other parts of the body. But many of these tumors will still eventually mature into nerve tissue or go away on their own." I stop reading here and I write next to this paragraph this is why I would "wait and watch". It is the next sentence that changes my mind. "However, as children get older, it becomes less likely that these cells will mature and more likely that they will continue to grow into a cancer. By the time neuroblastomas are large enough to be felt or cause symptoms(London's has not yet-unless we are counting recent occ. neck pain),most can no longer mature on their own and will grow and spread unless treated. The next thing I read is about recent research. "Researchers recently found that neuroblstoma cells in older children are more likely to have changes in the ATRX tumor suppressor gene. Tumors withthis gene tend to grow more slowly, but they are harder to cure. This may help explain why younger children with neuroblastoma tend to do better long term than children who are older when diagnosed. I feel lucky. I feel like we are ahead of the "game". We are catching this before symptoms, before it is felt. I tell my husband what I think. We both agree to try the chemo. That night we talk to our kids and explain what is going on and about the changes that are coming. We will try to keep a "normal" routine. We need every one's help. We talk about how little things like getting homework done, keeping your room clean, less arguing with each other will all be very helpful and decrease stress. My husband will take a FMLA intermittent from work in case London spikes a fever in the middle of the night and I have to go to the hospital, so he can be here to take care of the kids, or if I get sick and he needs to care for London or take her for her chemo treatment. His work is very supportive. We are very thankful for his job, and the people he works with. They sent London a teddy bear and flowers designed like a pink poodle in a basket for positive thoughts while she begins her treatment the card read. We will continue with cub scouts, baseball will be starting next month, cheerleading and girl scouts. This is the life GOD gave us, we just need to make adjustments. We will trust in the Lord. We will have faith. Faith is more powerful than any sickness or disease that would attempt to place itself on our child. We will Hope and Pray.
Give all your worries to him, because he cares for you.
1 Peter 5:7
February 25, 2013
Jimmy Fund: meet with oncologist and RNP, answer questions, sign consent for chemo, schedule a hearing test and an echo(heart test ultrasound) tp get a baseline prior to starting chemo,since there is a chance chemo can affect both. Schedule to have outpt day surgery for port placement(access under skin in chest-to draw labs off of, administer chemo, etc-so it won't hurt London because we numb it with medication prior to accessing it)
February 28, 2013
9am hearing test- normal
11am echo- also normal
March 1, 2013(an exact year since her first surgery when they removed her adrenal gland(neuroblastoma)
Day Surgery for port-a-cath placement. Surgery went well. No problems. Plan is to go home, enjoy the weekend with our family, and start the 1st cycle of chemo on Monday. It would be Monday, Tuesday and Wednesday.
London is not a "textbook" case. Is this to her benefit or not, I am not sure.
Original tumor in adrenal gland favorable histology
T11 bone biopsy shows "active" neuroblastoma
T11 bone biopsy not enough to do pathology-not enough bone to "revisit" this site for a new sample. From what is known, usually what you have is what you have. So assuming favorable histology.
May have new site( or is it an old site-going away-trying to be optimistic and hopeful here) on C4-although within last month and 1/2 London has occasionally complained of pain here.
Abdominal mass is gone. Will one on spine just disappear also?
London is staged at a 4
London is healthy, has more than met milestones, and has been walking around with cancer in her body for a year(if not more) as of right now.
And we still would not know this if we hadn'd biopsied the site
Chemo: Would be treated at intermediate risk group.Would consist from 4-8 cycles. Each cycle consists of 21 days.
15-20% reoccurance of neuroblastoma in the future.
If reoccurance, comes back harder to treat, same histology, but chemo used prior would not work, would need intense treatment(High Risk-chemo, stem cell, immunotherapy)-London not eligible for MIBG therapy(where they attach radiation to isotope so neuroblastomas absorb this and it kills off neuroblastoma cells) because London's neuroblastomas did not absorb isotope MIBG scan for London was negative.
Side effects, although rare, are very scary Leukemia, other cancers, heart decay, and liver problems.
Could require blood transfusions, platelets, etc
If WBC (white blood cells low) increased risk for infection, any fevers need to be hospitalized.
Ok, so now it is school vacation, we are trying to have a fun, happy, "normal" week. -during the day. I am up with my husband at night reading, researching, praying for guidance which route to go. My husband is for the chemo. I am still going back and forth. I follow another little girls story on the computer who is currently" waiting and watching" . Then I come across 2 things that make up my mind. First, I read that " Sometimes neuroblasts remaining in very young infants continue to grow and then form tumors. Some even spread to other parts of the body. But many of these tumors will still eventually mature into nerve tissue or go away on their own." I stop reading here and I write next to this paragraph this is why I would "wait and watch". It is the next sentence that changes my mind. "However, as children get older, it becomes less likely that these cells will mature and more likely that they will continue to grow into a cancer. By the time neuroblastomas are large enough to be felt or cause symptoms(London's has not yet-unless we are counting recent occ. neck pain),most can no longer mature on their own and will grow and spread unless treated. The next thing I read is about recent research. "Researchers recently found that neuroblstoma cells in older children are more likely to have changes in the ATRX tumor suppressor gene. Tumors withthis gene tend to grow more slowly, but they are harder to cure. This may help explain why younger children with neuroblastoma tend to do better long term than children who are older when diagnosed. I feel lucky. I feel like we are ahead of the "game". We are catching this before symptoms, before it is felt. I tell my husband what I think. We both agree to try the chemo. That night we talk to our kids and explain what is going on and about the changes that are coming. We will try to keep a "normal" routine. We need every one's help. We talk about how little things like getting homework done, keeping your room clean, less arguing with each other will all be very helpful and decrease stress. My husband will take a FMLA intermittent from work in case London spikes a fever in the middle of the night and I have to go to the hospital, so he can be here to take care of the kids, or if I get sick and he needs to care for London or take her for her chemo treatment. His work is very supportive. We are very thankful for his job, and the people he works with. They sent London a teddy bear and flowers designed like a pink poodle in a basket for positive thoughts while she begins her treatment the card read. We will continue with cub scouts, baseball will be starting next month, cheerleading and girl scouts. This is the life GOD gave us, we just need to make adjustments. We will trust in the Lord. We will have faith. Faith is more powerful than any sickness or disease that would attempt to place itself on our child. We will Hope and Pray.
Give all your worries to him, because he cares for you.
1 Peter 5:7
February 25, 2013
Jimmy Fund: meet with oncologist and RNP, answer questions, sign consent for chemo, schedule a hearing test and an echo(heart test ultrasound) tp get a baseline prior to starting chemo,since there is a chance chemo can affect both. Schedule to have outpt day surgery for port placement(access under skin in chest-to draw labs off of, administer chemo, etc-so it won't hurt London because we numb it with medication prior to accessing it)
February 28, 2013
9am hearing test- normal
11am echo- also normal
March 1, 2013(an exact year since her first surgery when they removed her adrenal gland(neuroblastoma)
Day Surgery for port-a-cath placement. Surgery went well. No problems. Plan is to go home, enjoy the weekend with our family, and start the 1st cycle of chemo on Monday. It would be Monday, Tuesday and Wednesday.