Where we stand after the MRI scan
Good evening to you all.
Today was a very hard and long day for us.
I feel it is important to make everyone aware of a few facts so that you can understand better, the reasons why Chiane had an MRI.
It’s important for people to understand, sPNET brain cancer (what Chiane has) is well known to the medical field as the cancer “that withdraws during treatment to take a breather and hits back, harder after treatment”. Some of you might recall, this already happened to Chiane last year. We introduced 6 different chemo’s from July 11 to Sept 11…Chiane had an MRI and the results were that it was clean cancer free. Only 5 weeks after that clear MRI scan, Chiane had seizures. Another MRI was done ebd of Sept 11 and the cancer was back and spreading. This type of cancer is known to take a breather and then hit back, twice as hard.
We then introduced the radiotherapy to her cancer and 1 session of Thiotepa (chemo).
It was a mutual feeling between us as parents and the consultants that if her MRI results today were showing that the cancer was spreading again (after receiving radio and Thiotepa); we decided that we will stop all treatment as it will be pointless to continue with more Chemo.
To our reliefe, the MRI results today revealed that there was no changes to her brain compared to her last MRI take in December. So, the only conclusion we drawn today from her MRI results were that we can continue with more Chemo. Today’s MRI results does not mean that Chiane is cancer free…
Her MRI is unchanged compared to her scan in December, which means there is still something there, a “fuzziness”. We do not know if this cancer is still “alive and active” or whether this fuzziness is scar tissue (meaning dead cancer just sitting there). What we do know, is that the cancer hasn’t spread.
Of course we are extremely relieved! But, we are not relieved because Chiane is “cancer free”, it is far from it. We are relieved that we can continue treatment. This is why we want to go to the states and continue treatment because we do not want to wait for her cancer to return after the next and last chemo.
Where we stand right now, we do not know if her cancer is just taking “a breather” or if it is gone.
We will only know if Chiane is cancer free:
1) once she had her last chemo and treatment is over AND
2) she had a clean MRI scan at 3 months, 6 months and 9 months after treatment…. Then we as parents will get excited that We might have won this battle.
Most children pass away between 6 months and 2 years after treatment because in most cases the cancer withdrawn to take a breather and then comes back very very aggressively.
Therefore, we kindly ask not to run away with the idea that Chiane is cancer free. Her battle is still far from over. Be excited with us that we can continue treatment.
We discussed today when Chiane will start her last chemo and we agreed to give Chiane a break until the 10th of March 2012. Chiane will be back at great Ormond street on the 11th of March and start with chemo on the 12th of March.
From now to then, we will work our nuts off to boost her body and immune system, work on her weight and get her mentally ready for the last Thiotepa as it will hit her harder as the last one.
From now till then, Chiane will also receive lots platelet transfusions at our local hospital.
Her white blood cells count, her red blood cells count and her neutrophil counts are now all normal. It’s just the platelets and she will receive many many transfusions because her body is using it up as soon as she receive a transfusion to repair her body and specifically her gut and organs.
Thank you for your continues support and please keep praying with us. We also would like to thank everyone still involved with fund raising for her treatment in America and everyone that has done fund raising!