From her mom..
"I'm going to cut to the chase and just let everyone know that we finally received good news. Good news we have been craving for SO long!
Rhyan's new oncologist at Sloan in NYC finally called us back with the results from her PET scan and bone marrow testing that she did last week.
We did an MIBG scan last week that showed us no change in her cancer. The MIBG scan basically shows everywhere there is uptake in a cell, hence the cancer. Rhyan's scan lit up like a Christmas tree as it had the previous scans showing no decrease. The purpose of the PET scan is to show if and where there is any ACTIVE cancer. So when our oncologist called today, he informed us that there is a dramatic difference in comparing her MIBG scan and her PET scan. That means that a lot of her cancer is NON ACTIVE!!!
Cancer starts from a cell not maturing and doing it's job. These cells then start dividing and dividing and not maturing like they are supposed to, meaning that they are active cancer cells. At some point, a lot of Rhyan's cancer cells started to try and figure out their job. So they stopped dividing and started maturing, which means that they became non active cancer cells. So there are still these cells that are invading Rhyan's body, but at this point in time, they are not doing anything.
While our main goal is to try and rid ALL of those cells in her body, regardless if they are active cancer or non active cancer...this is definitely a great step in the right direction. While we have been told that once an immature cancer cell turns mature (non active), there is only a small chance that it can go back to being immature (active), we don't ever want to take that risk. We want all of it out, but for now we will rejoice in this victory!
So we are moving on to the next step, quickly. Rhyan will start two rounds of chemo. And while I was so hoping for no more chemo...these next two rounds will be low dose chemo, and I have heard GREAT things about it. Great things, as in, it has worked very well for kids in Rhyan's situation. She will do a five day cycle of OUT PATIENT chemo. That is right, we can go home every night!!!! We will take a two week break and then do another 5 day cycle. There will be two drugs in each cycle...one is an hour infusion and the other drug is a pill that will be dissolved in apple juice that she will drink. So we will go to clinic (hopefully things will be ready to roll on Wednesday), get her hour of chemo and then go back to school and go about the rest of our day. Her counts will not bottom out, hopefully they won't move too much, either, and she shouldn't have the horrible nauseas side effects or mouth sores. The main side effect that goes along with this chemo is very bad diarrhea, so she will start on some medication to try and prevent this.
I knew we were going to be getting a sign of progress, I just didn't know when. We have all kept our trust in God, even when we have been hit with blow after blow. We just kept trucking along knowing that he was going to give us something and he did. Thank you to everyone who has continued to keep all of us in your prayers, it's working! You have no idea how excited I was to not only hear the great news of her scans, but to know that we will be home for a little over a month! I was so scared that the next step was going to be treatment in NYC soon. That was a very good possibility but we need to be home with Rhyan and our other kids and their friends and I am so happy that God made that happen for us."
"I'm going to cut to the chase and just let everyone know that we finally received good news. Good news we have been craving for SO long!
Rhyan's new oncologist at Sloan in NYC finally called us back with the results from her PET scan and bone marrow testing that she did last week.
We did an MIBG scan last week that showed us no change in her cancer. The MIBG scan basically shows everywhere there is uptake in a cell, hence the cancer. Rhyan's scan lit up like a Christmas tree as it had the previous scans showing no decrease. The purpose of the PET scan is to show if and where there is any ACTIVE cancer. So when our oncologist called today, he informed us that there is a dramatic difference in comparing her MIBG scan and her PET scan. That means that a lot of her cancer is NON ACTIVE!!!
Cancer starts from a cell not maturing and doing it's job. These cells then start dividing and dividing and not maturing like they are supposed to, meaning that they are active cancer cells. At some point, a lot of Rhyan's cancer cells started to try and figure out their job. So they stopped dividing and started maturing, which means that they became non active cancer cells. So there are still these cells that are invading Rhyan's body, but at this point in time, they are not doing anything.
While our main goal is to try and rid ALL of those cells in her body, regardless if they are active cancer or non active cancer...this is definitely a great step in the right direction. While we have been told that once an immature cancer cell turns mature (non active), there is only a small chance that it can go back to being immature (active), we don't ever want to take that risk. We want all of it out, but for now we will rejoice in this victory!
So we are moving on to the next step, quickly. Rhyan will start two rounds of chemo. And while I was so hoping for no more chemo...these next two rounds will be low dose chemo, and I have heard GREAT things about it. Great things, as in, it has worked very well for kids in Rhyan's situation. She will do a five day cycle of OUT PATIENT chemo. That is right, we can go home every night!!!! We will take a two week break and then do another 5 day cycle. There will be two drugs in each cycle...one is an hour infusion and the other drug is a pill that will be dissolved in apple juice that she will drink. So we will go to clinic (hopefully things will be ready to roll on Wednesday), get her hour of chemo and then go back to school and go about the rest of our day. Her counts will not bottom out, hopefully they won't move too much, either, and she shouldn't have the horrible nauseas side effects or mouth sores. The main side effect that goes along with this chemo is very bad diarrhea, so she will start on some medication to try and prevent this.
I knew we were going to be getting a sign of progress, I just didn't know when. We have all kept our trust in God, even when we have been hit with blow after blow. We just kept trucking along knowing that he was going to give us something and he did. Thank you to everyone who has continued to keep all of us in your prayers, it's working! You have no idea how excited I was to not only hear the great news of her scans, but to know that we will be home for a little over a month! I was so scared that the next step was going to be treatment in NYC soon. That was a very good possibility but we need to be home with Rhyan and our other kids and their friends and I am so happy that God made that happen for us."
