Some may be wondering why we have travelled here to Philadelphia with Catherine. Here is the reason...retinoblastoma is a relatively rare cancer with about 300 cases occurring in the US every year. There are plenty of ophthalmologists, oncologists, and pathologists who have seen very few or no kids with this type of cancer. That's why we have travelled here, where children come from all over the country and from other parts of the world to see the doctors at the Will's Eye Hospital. They have the most experience with RB. We still love our doctors in Columbus, but feel that this is the best place to treat Catherine for RB. We would have never even known about the doctors here if it hadn't been for some dear friends of ours who have walked this road three times with three different children. We are so grateful to them and to God for giving us this opportunity.
Today we met with a pediatric oncologist at CHOP (Children's Hospital of Philadelphia). She was great, she took her time with us, explained everything in a way we could understand and answered all our questions. Retinoblastoma is what this doctor specializes in. She even gave me a hug when we left!
This doctor will be very important if Catherine needs chemotherapy, but she will also be important in the next few years for Catherine even if she doesn't need chemo to help determine if other cancers develop in other areas in her body.
We won't know if Catherine needs chemo for a few weeks, at least, after her enucleation (eye removal). I much rather the term enucleation. It has already been determined through MRI and blood tests that Catherine had done today that the cancer has most likely not spread to her brain nor her bones and bone marrow. This is good news. The reason it will take a few weeks to determine if she needs chemo is because after her enucleation, the eye will be sent to a pathologist, again, this doctor is someone who has a lot of experience looking at this type of cancer. He will look at the tissue under a microscope to determine if the cancer has spread to the outer layers of the eye or to the optic nerve. If it has, Catherine will need chemo. We also learned today how important the surgeon is during the enucleation. She will need to remove the optic nerve as far back and as close to the brain as possible in order to make sure all of the tumor is removed.
The oncologist is very hopeful that Catherine will be cured once the enucleation is complete. She told us that 15% of kids who have an enucleation need chemo. We are very hopeful that she is in that other 85% percent. If she does need chemo though, we are confident that it will get rid of any metastasis (spreading) of the cancer because RB is very treatable and curable. In the US, the cure rate is over 90%.
RB is linked genetically. Normally people have a RB suppressor gene on each of their two 13 chromosomes. If this gene is missing or malfunctioning, there is a greater risk of developing RB. What exactly is causing Catherine's RB is a big question for us. We know that Catherine is missing some genetic information on one of her 13 chromosomes, but how this relates to RB we are not sure yet. Because of this missing information, Catherine may be at risk for other types of cancers, that is why it is an important question. We will speak to the geneticist here in Philadelphia (that specializes in RB) about what exactly is going on with her chromosomes. I will post about that when we know more.
As for Catherine's surgery, it will most likely take place Thursday or Friday. We will find out tomorrow. Thank you all for your prayers for us and for Catherine. We are so grateful to all of you. We will pray for you!
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