The MIBG Scan, the bone marrow, and the pathology report from the tumor resection would give us all the information that we need to see what the next step for Mallory was.
The sad thing is we've become pro's at scans, blood draws, and sedation's. The first time is always the hardest after that you have to learn to stay strong so that your child can stay strong.
The things they were looking for and we had our fingers crossed that would come back in our favor were:
We knew already that she would be not a stage 1 because she had 2 tumors. We had assumed that she would be placed in the Stage 4 Category because of the fact that her cancer moved past the mid line of her body. They had already told us that Stage 4S would most likely not be an option for Mal since she had 2 major organs effected by Neuroblastoma. We knew whatever this came back as wasn't the end of the world, since there were so many factors that go into prognosis and diagnosis.
- Stage 1: Localized tumor confined to the area of origin.
- Stage 2A: Unilateral tumor with incomplete gross resection; identifiable ipsilateral and contralateral lymph node negative for tumor.
- Stage 2B: Unilateral tumor with complete or incomplete gross resection; with ipsilateral lymph node positive for tumor; identifiable contralateral lymph node negative for tumor.
- Stage 3: Tumor infiltrating across midline with or without regional lymph node involvement; or unilateral tumor with contralateral lymph node involvement; or midline tumor with bilateral lymph node involvement.
- Stage 4: Dissemination of tumor to distant lymph nodes, bone marrow, bone, liver, or other organs except as defined by Stage 4S.
- Stage 4S: Age <1 year old with localized primary tumor as defined in Stage 1 or 2, with dissemination limited to liver, skin, or bone marrow (less than 10 percent of nucleated bone marrow cells are tumors).
Tumor histology is based on how the neuroblastoma cells look under the microscope. Tumors that contain more normal-looking cells and tissues tend to have a better prognosis and are said to have a favorable histology. Tumors whose cells and tissues look more abnormal under a microscope tend to have a poorer prognosis and are labeled as having an unfavorable histology.
We wanted this to come back as FAVORABLE
DNA ploidyThe amount of DNA in each cell, known as ploidy, can be measured by special lab techniques, such as flow cytometry or imaging cytometry. Neuroblastoma cells with about the same amount of DNA as normal cells are classified as diploid. Cells with increased amounts of DNA are termed hyperdiploid.
In infants, hyperdiploid cells tend to be associated with earlier stages of disease, respond better to chemotherapy, and usually predict a more favorable prognosis (outcome) than diploid cells.
We wanted this to come back as hyperdiploid cells.
MYCN gene amplifications
this one SCARED the shit out of us, we prayed and prayed and prayed this would come back NOT amplified. When a child has cancer cells it means that cells are dividing, this can mean only 3 cells or thousands of cells. Which is where the M-YCN amplification lies when the cells are dividing in mass amounts. To have a better diagnosis your chances of survival are higher obviously with low - no amplification of the cells.
After reading many many stories of other children, a lot of the stories we were seeing involved children passing due to that amplification of cells.
So we prayer and prayed and prayed that she would not have MYCN.
This is the "Risk" Categories
- All children who are Stage 1
- Any child who is Stage 2A or 2B and younger than age 1
- Any child who is Stage 2A or 2B, older than age 1, whose cancer has no extra copies of the MYCN gene
- Any child who is Stage 2A or 2B, older than age 1, whose cancer has extra copies of the MYCN gene but has a favorable histology (appearance under the microscope)
- Any child who is Stage 4S (younger than age 1), whose cancer has favorable histology, is hyperdiploid (excess DNA) and has no extra copies of the MYCN gene
- Any child who is Stage 3, younger than age 1, whose cancer has no extra copies of the MYCN gene
- Any child who is Stage 3, older than age 1, whose cancer has no extra copies of the MYCN gene and has favorable histology (appearance under the microscope)
- Any child who is Stage 4, younger than age 1, whose cancer has no extra copies of the MYCN gene
- Any child who is Stage 4S (younger than age 1), whose cancer has no extra copies of the MYCN gene and has normal DNA ploidy (number of chromosomes) and/or has unfavorable histology
- Any child who is Stage 2A or 2B, older than age 1, whose cancer has extra copies of the MYCN gene and unfavorable histology (appearance under the microscope)
- Any child who is Stage 3, younger than age 1, whose cancer has extra copies of the MYCN gene
- Any child who is Stage 3, older than age 1, whose cancer has no extra copies of the MYCN gene but has unfavorable histology
- Any child who is Stage 3, older than age 1, whose cancer has extra copies of the MYCN gene
- Any child who is Stage 4, younger than age 1, whose cancer has extra copies of the MYCN gene
- Any child who is Stage 4 and older than age 1
- Any child who is Stage 4S (younger than age 1), whose cancer has extra copies of the MYCN gene
We had NO idea what Mallory would be in the "risk" categories, this determine her treatment more than anything. She would most likely not be Low Risk because her 2nd tumor would not be able to be removed. She would have to have chemotherapy, there was no way around this. We were looking at Intermediate Risk or High. We had hope that she would be in the Intermediate Category for many different factors but the biggest is the cure rate is MUCH MUCH higher.
Children in the low risk category have a five-year survival rate between 90 to 95 percent.
Children in the intermediate risk category have a survival rate of 80 to 90 percent.
Children in the high risk group has a survival rate of 20 to 40 percent.
In 1960 the prognosis for children with neuroblastoma was ZERO!
Hopefully the world of medicine will eventually make this a 100%!
We received a piece of the puzzle on December 12th that the MIBG showed that Mallory's Neuroblastoma had NOT spread to any other organs, the only spot that was showing up was the tumor that we knew she already had. The MIBG scan lights up any active Neuroblastoma cells.
on the 13th we got the news that Mallory did NOT have any neuroblastoma in her bone marrow! Another great piece of the puzzle!
Friday December 16th Ryan Wrote this:
Oh, we can see the light at the end of the tunnel, and it is a warm and glorious light. It is God's light. God showed us that he will see us through this difficult time, and we will endure.
Chemo starts next Wednesday. They are going to keep her at the hospital for a few days, but she should be home by Christmas.
We're not exactly thrilled that we have to isolate our daughter during the holidays, but make no mistake about this:
This is by far one of the best Christmas presents we have ever received!
Mallory had NO MYNC AMPLIFICATION AND FAVORABLE HISTOLOGY! PRAISE THE LORD!
Her official Diagnosis was Stage 2B Neuroblastoma, Intermediate Risk.The stage 2b was very hard for them to place, the chances of having a child so young with a tumor that was on opposite sides of the body is very RARE, let alone having double adrenal tumors. They have only ever had a few cases of this.
We checked everything off
No Cancer in the bones
No Cancer in the bone marrow
No MYNC amplification
I remember crying and crying and crying. And holding my sweet dear love. We would start chemo the week before Christmas. We didn't know what to expect, it wasn't going to be great, but to get her to the point where she needed to be we would have to do this. We would have to pump posion into our little girls body so that she could LIVE. So that she had a chance at life.
Her prognosis was 90% cure rate. What a glorious glorious number to hear. No one should ever be given a number to determine what chance your child has at life.
(Mal's 1st hair cut. People looked at us like we were NUTS when we were getting her hair cut off, but she would lose it regardless so we thought we'd at least have a keepsake!)