This morning at 5:30 am Gregorio took Isabella to the hospital for surgery. It was pretty cold and icy out there. Gregorio and I were comatose at that hour, Isabella was alert and excited, she was getting her port out. A quick bit of shoveling to clear the tracks from our driveway and they were off. All went smoothly and they were back home having breakfast by 11.
Isabella has been relaxing at home, watching the TV with Mati - no school for both of them again today. No school tomorrow either, they haven't been at school since last Thursday and the way things are going it is unlikely they will be going back this week and then it is half term!
In case you missed the news, Washington DC received an historic amount of the white stuff, as predicted last Friday and Saturday. Somewhere in the region of 25-30 inches. We have dug ourselves out but the roads are still a mess. And now as I write this, the next snow storm has begun, a few hours later than they advised but it is set to snow till tomorrow evening and bring a mere 10-20 inches this time.
Sunday and Monday were beautiful sunny days. We had lots of fun playing in the snow. Needless to say lots of cooking and eating has been going on the past 5 days, think we deserved it after shoveling 2 feet of snow and walking up our street (hard enough without snow!)
Lots of love,
Emma & Gregorio. xxx
Tuesday, February 9, 2010
Thursday, February 4, 2010
All stable, life without chemo is good.
We met with the neuro-oncology team at Children's this morning and were told that last week's MRI showed that all is STABLE, the port is coming out, we are free of chemotherapy for the time being. A huge sigh of relief. 2010 continues to be a good year.
After a neurological exam, the doctor showed us the scans of the brain and spine. Isabella said she wanted to stay and look. She pointed out to her neurologist "that's my brain stem, that's the cerebellum, my eyes and the optic nerves, now where's the tumor?" We laughed, she's going to be a doctor. Then he pulled up some scans from the July MRI to compare how things had changed in six months, at which point Isabella announces "oh this is SO boring, I'm off to the art room!" She had the information she needed, the port is coming out.
Gregorio and I discussed the future. They repeated what we have been told before. It is a slow growing tumor so we hope to buy as much time as possible before we reach the last resort: radiation. In the meantime there would be more chemotheraphy as an option, depending on when regrowth happens or hopefully new drugs that are in trial, would be available. We were assured that he would get us to or bring the latest treatment to Isabella, whenever it is needed. He is a world renown neurologist but also incredibly down to earth and a support to Isabella and the family this past year and a half. He did point out that they've been hoping for a breakthrough with new treatment for about 10 years and they are still waiting for it to happen. However, it is true medicine is making tremendous advances.
To this end, we have chosen to support Brain cancer research whenever possible. We have decided to run again in the Race for Hope in Washington DC on May 2. If you go to www.CureBrainTumors.org you should be able to find our team. Let us know if you want to join the team - in reality or as a virtual runner or donate what you can. We know there are many valuable causes out there, not least the poor survivors of the recent Haiti earthquake, we are grateful for any contributions you can give. I have also written a children's story about Isabella's journey which a lovely friend, who's family know all about brain tumors, is kindly illustrating. The aim is to help other children going through similar experiences and ultimately give money to brain cancer research. If nothing else it will be a beautiful book for Isabella to remember what she has been through.
Since Isabella finished treatment she has gained strength, her hair is growing thicker and a sense of total serenity has descended on the household. It has been a happy month, none of that sinking feeling when we wake up on Thursday morning. It was very sweet at supper this evening when Gregorio says "a toast to life without chemotherapy" and Mati says "don't mention that chemo stuff, it makes Bella feel sick!" She was happy to understand that we were done with chemo.
Tuesday they will take out the port and then no further worries about fevers and having to run to the ER and perhaps more importantly we avoid a monthly flush of the line and all the anxiety that would cause Isabella. Thankfully we managed to have the port accessed and flushed while Isabella was sedated for the MRI last week so avoided all the drama.
The next MRI is scheduled for April 21st. Before that, we are off to Utah for a week's skiing. We are really looking forward to it, not that we haven't done a lot of skiing locally for the day in the past couple of months and have been getting a fair amount of the white stuff in DC. Two snow storms in the past week and a major snow storm forecast to start Friday at noon - so much so Gregorio's office will be closed and so is school tomorrow. Guess my free day to run around and do errands is out the window! I managed to grab the few remaining things on the supermarket shelves this evening. It is always so amusing to watch the panic buying up at the stores prior to a snow storm. So we are all set for a week-end of cooking and eating in the Impavido household between sledding and snowman making. Then the week before Easter, Isabella's wish thanks to Make a Wish is being granted, we will travel to Disney world in Florida for a week of pure fun.
Fun times lie ahead, not to mention the planning of a European trip this summer. More news at the end of April.
Lots of love,
Emma & Gregorio. xxx
After a neurological exam, the doctor showed us the scans of the brain and spine. Isabella said she wanted to stay and look. She pointed out to her neurologist "that's my brain stem, that's the cerebellum, my eyes and the optic nerves, now where's the tumor?" We laughed, she's going to be a doctor. Then he pulled up some scans from the July MRI to compare how things had changed in six months, at which point Isabella announces "oh this is SO boring, I'm off to the art room!" She had the information she needed, the port is coming out.
Gregorio and I discussed the future. They repeated what we have been told before. It is a slow growing tumor so we hope to buy as much time as possible before we reach the last resort: radiation. In the meantime there would be more chemotheraphy as an option, depending on when regrowth happens or hopefully new drugs that are in trial, would be available. We were assured that he would get us to or bring the latest treatment to Isabella, whenever it is needed. He is a world renown neurologist but also incredibly down to earth and a support to Isabella and the family this past year and a half. He did point out that they've been hoping for a breakthrough with new treatment for about 10 years and they are still waiting for it to happen. However, it is true medicine is making tremendous advances.
To this end, we have chosen to support Brain cancer research whenever possible. We have decided to run again in the Race for Hope in Washington DC on May 2. If you go to www.CureBrainTumors.org you should be able to find our team. Let us know if you want to join the team - in reality or as a virtual runner or donate what you can. We know there are many valuable causes out there, not least the poor survivors of the recent Haiti earthquake, we are grateful for any contributions you can give. I have also written a children's story about Isabella's journey which a lovely friend, who's family know all about brain tumors, is kindly illustrating. The aim is to help other children going through similar experiences and ultimately give money to brain cancer research. If nothing else it will be a beautiful book for Isabella to remember what she has been through.
Since Isabella finished treatment she has gained strength, her hair is growing thicker and a sense of total serenity has descended on the household. It has been a happy month, none of that sinking feeling when we wake up on Thursday morning. It was very sweet at supper this evening when Gregorio says "a toast to life without chemotherapy" and Mati says "don't mention that chemo stuff, it makes Bella feel sick!" She was happy to understand that we were done with chemo.
Tuesday they will take out the port and then no further worries about fevers and having to run to the ER and perhaps more importantly we avoid a monthly flush of the line and all the anxiety that would cause Isabella. Thankfully we managed to have the port accessed and flushed while Isabella was sedated for the MRI last week so avoided all the drama.
The next MRI is scheduled for April 21st. Before that, we are off to Utah for a week's skiing. We are really looking forward to it, not that we haven't done a lot of skiing locally for the day in the past couple of months and have been getting a fair amount of the white stuff in DC. Two snow storms in the past week and a major snow storm forecast to start Friday at noon - so much so Gregorio's office will be closed and so is school tomorrow. Guess my free day to run around and do errands is out the window! I managed to grab the few remaining things on the supermarket shelves this evening. It is always so amusing to watch the panic buying up at the stores prior to a snow storm. So we are all set for a week-end of cooking and eating in the Impavido household between sledding and snowman making. Then the week before Easter, Isabella's wish thanks to Make a Wish is being granted, we will travel to Disney world in Florida for a week of pure fun.
Fun times lie ahead, not to mention the planning of a European trip this summer. More news at the end of April.
Lots of love,
Emma & Gregorio. xxx
Monday, February 1, 2010
Waiting for news
Just in case you are waiting on news from last week's MRI - and a number of you have kindly asked - we probably won't know anything till this Thursday (February 4th). Our meeting with the doctors to review the scans and talk about the next steps was moved (several weeks ago) to Thursday. Don't read anything into the change of date. Isabella is doing well, we are all very distracted with lots of work, school and skiing. More news when we have it.
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