This morning we met with the brain tumor specialist at Children's to discuss the next stage. They have diagnosed a Juvenile Pilocytic Astrocytoma (JPA). It is low grade; i.e., not aggressive. This is good news. They are seeking a second opinion from a pediatric pathologist in Philadelphia.
Isabella will be starting chemotherapy in about two weeks time. She will have weekly doses every Thursday for 10 weeks at Children's. There will then be a break and then start again for four weeks and off for three. As many of you know, these things do change and evolve depending on how the person and the tumor reacts to the treatment. There are other drugs that they will try if the first one doesn't work.
It is not an aggressive form of chemo and most of his patients respond well. However, this is not your average tumor because on reviewing the MRI of the spine they did find a small tumor there and there is the smaller tumor in another area of the brain. This type of tumor does not tend to spread like this, so there could be other tumors that they have not yet located (but only in the spine or brain). Chemotherapy is the best option at this stage.
The aim is to control or hopefully reduce the size of the tumors for the next 3-5 years. In which time there may be new treatments that are currently in trials. As a last resort, there is radiotherapy. This would kill the tumors but there is the risk of brain damage.
Isabella is doing extremely well, given that she underwent brain surgery last Friday. She is bouncing around and bored of being at home. So it is back to school on Monday and business as usual. She does not yet understand everything that is going on but she is being very cooperative and taking it all in her stride. Should you meet/talk to her, please let her bring the subject up and talk about it very matter of factly.
Love,
Emma & Gregorio
10 comments:
Carissimi, un passo alla volta e piano piano la montagna si risale. Gia' il fatto che recuperi cosi' in fretta mi sembra un ottimo segnale, e poi la sua allegria e serenita' credo che rendera' la terapia piu' efficace. Ringraziamo Dio per le buone notizie e continuiamo a contare sul Suo sostegno e conforto. Grazie sempre a voi per gli aggiornamenti consolanti e completi.
Il Signore vi benedica,
lele e marina
Emma and Gregorio,
Not that we understand too much about the diagnosis, despite some research on the web, but the news seems fairly encouraging. Our love to you all and especially to Isabella who is obviously dealing with it all better than we adults!
Peter and Lynn
Big hugs to all of you! It probably doesn't feel like it but to the rest of us looking on helplessly your being such an amazing family and so strong. You are in our thoughts. Jamie talks about Bella everyday and is making her a very sparkly necklace this time! love to you all, Hugs to Bella and Matty,
Juliet, Ben and Jamie.xxx
Carissimi vi siamo vicini in questo durissimo percorso che seguiamo con apprensione. La forza di Isabello speriamo lo renda meno faticoso. Ci sono segnali positivi e in questa fase mi sembre già molto. Continuo a chiedere al Signore che vi aiuti e vi tenda la sua mano. Vi abbracciamo forte forte
Paola e Aldo
My Dear Emma and Gregorio
The news seems fairly positive and I am amazed at Isabella's resilience. Children are so amazing. I hope she responds well to the chemo. Will keep looking on the blog and will be thinking of you.
My love to you all
Sally
Still thinking of you. My fingers are crossed.
Carissimi Emma e Ghio, grazie per le ultime notizie, che riteniamo comunque rassicuranti. E' bello sapere che Isabella reagisce bene e con forza, da vera Impavido! Vi siamo sempre vicini. Un bacione alla piccola e un abbraccio forte a voi due, di tutto cuore!
Giorgio, Deborah, Filippo e Matteo
Cari Emma e Gregorio,nonostante la nostra scarsa conoscenza della lingua e dei termini medici, le notizie che ci inviate rivelano un certo ottimismo e sopratutto la principessa è una bimba molto forte. Speriamo di ricevere sempre migliori notizie.Vi siamo vicini Mara e Fausto.
I've just heard your news from Janie. I just want to let you know that our thoughts and good wishes are with you all and especially to Isabella, love Katy & Allen x
Hey ho everyone, seems things are on the up with Bella...just hope the chef will reach her exacting cullinary standards!
Charlotte and Sophie want to know when we will see you all again so they can play in the paddling pool at Grandmas? Some time i suspect.
All our love, huggs and kisses
Charlotte, Sophie, Susie and James
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