We have been overwhelmed with all your kind words and thoughts in the past couple of days - in person, by phone, email and the comments you have left here. THANK YOU. You are all giving us strength to fight the days, weeks and months ahead. Not only have you sent words of support and love but you have reached out to pediatric neurosurgeons and oncologists around the world. You know who you are, we are truly touched.
Today we met with another pediatric neurosurgeon at Johns Hopkins in Baltimore. The bad news is that all doctors agree that it is not a "simple" pituitary gland adenoma, as we had hoped for, but a real glioma which tends to spread in the brain and recur over time. The good news is that among the four grades around, all doctors agree that this is a low grade glioma: i.e., extremely treatable with chemo. He also confirmed what we were told last week at Children's hospital but added that what appeared to others as a tumor split off from the main one, in another area of the brain, could well be a simple vein. Furthermore, we were reassured that we are in extremely good hands at Children's Hospital, here in DC. We are lucky enough to be able to receive another opinion from Rome in the coming days but as of now, consistency in opinions is a good thing.
We breathed a sigh of relief and found renewed strength as we move towards the biopsy this Friday. We then took Isabella for a really nice Greek lunch in Fells Point, even Gregorio and I were hungry today. This afternoon we also talked to her about a small weed in her head that needs to be removed, like a weed in the garden. We explained she will get her mask, fall asleep and then they will make a little cut and remove it. Like the small cyst she had removed from her neck a couple years ago. The conversation was very matter of fact, no questions asked and we carried on playing. She is still bouncing around and an extremely happy girl. In fact she is keeping us in line. On Saturday we produced a bowl of pasta for supper. Isabella said "no broccoli?" I apologised for not cooking any. "But we do need vegetables mummy!" Thanks Miss M, a lesson well learnt.
The upside of all this is the wonderful time we have had together as a family in the past couple of days. We painted pottery on Saturday, we went to the cinema and then on Sunday we went on the carousel at Glen Echo. $1 can buy a lot of happiness for all ages! Gregorio and I had talked about going away for a couple of days but Isabella is desperate to get back to school and see her friends and teacher. The highlight of her week-end was seeing 'my best friend'. So it will be business as usual until Friday. School for the girls, swimming lessons etc and Gregorio and I will distract ourselves by working.
We are grateful for all the offers of help, we will let you know when we need to take you up on them. As I am sure we will. In the meantime, family will start to arrive on Wednesday to assume Personal Assistant to Matilde. She is very happy, she seems to be getting a lot of playdates with her friends at the moment.
We will meet with the surgeon on Thursday afternoon and the operation will take place on Friday. We will be in the hospital for at least a week. We will keep you updated.
Thank you all for your continued support, it really does help.
Love,
Emma & Gregorio.
Monday, September 29, 2008
Friday, September 26, 2008
Principessa Impavido
On Tuesday an MRI revealed that Isabella has a brain tumor. Tests over the summer had confirmed that she had the condition precocious puberty and the MRI was merely a formality to rule out any tumors on the pituitary gland. Statistically the chances of finding any tumors were extremely low.
As the week progressed the news did seem to be going from bad to worse, but as we write this on Friday evening we have just learnt that there are no other cells in the spine. The blood work. done yesterday would strongly indicate that we are dealing with a low grade glioma, with possibly another small tumor in another part of the brain. The experts say it is treatable. We will be doing a biopsy next Friday - this is still major brain surgery - and will then know for certainty what type of tumor we are up against and what treatment we should then be following.
We are in extremely good hands at Children's hospital here in DC. We cannot describe the care and attention we have had in the past 3 days. And her pediatrician has also been extremely supportive. We shall seek a second opinion at John Hopkins in Baltimore on Monday but will almost certainly go with the surgeon at Children's hospital. She inspires great confidence and has done this type of surgery many times.
How is Isabella doing? She is amazing. She hasn't quite realised what is going on yet, despite the two MRIs this week - with sedation and the numerous doctor visits. She laughs in the waiting room, she is happy to be going for another MRI (as she might get another soft toy) and she barely kicked up a fuss at being woken at 6 am this morning to be given breakfast and then not allowed to eat until 7 this evening. Not to mention all the blood tests. This afternoon, she was telling the doctors what to do, "yeah, yeah give me the mask, I've done this before. I'll wake up later!" She is truly amazing and gives us strength to fight on.
This is only the beginning but we'll take it a step at a time and we will fight on. Isabella is a strong girl. We are truly grateful for all the support from the doctors, family, friends, work colleagues and the girls school. We will update you on her progress.
Love
Emma and Gregorio xxx
As the week progressed the news did seem to be going from bad to worse, but as we write this on Friday evening we have just learnt that there are no other cells in the spine. The blood work. done yesterday would strongly indicate that we are dealing with a low grade glioma, with possibly another small tumor in another part of the brain. The experts say it is treatable. We will be doing a biopsy next Friday - this is still major brain surgery - and will then know for certainty what type of tumor we are up against and what treatment we should then be following.
We are in extremely good hands at Children's hospital here in DC. We cannot describe the care and attention we have had in the past 3 days. And her pediatrician has also been extremely supportive. We shall seek a second opinion at John Hopkins in Baltimore on Monday but will almost certainly go with the surgeon at Children's hospital. She inspires great confidence and has done this type of surgery many times.
How is Isabella doing? She is amazing. She hasn't quite realised what is going on yet, despite the two MRIs this week - with sedation and the numerous doctor visits. She laughs in the waiting room, she is happy to be going for another MRI (as she might get another soft toy) and she barely kicked up a fuss at being woken at 6 am this morning to be given breakfast and then not allowed to eat until 7 this evening. Not to mention all the blood tests. This afternoon, she was telling the doctors what to do, "yeah, yeah give me the mask, I've done this before. I'll wake up later!" She is truly amazing and gives us strength to fight on.
This is only the beginning but we'll take it a step at a time and we will fight on. Isabella is a strong girl. We are truly grateful for all the support from the doctors, family, friends, work colleagues and the girls school. We will update you on her progress.
Love
Emma and Gregorio xxx
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