Today we visited Lucy, a six-story wooden elephant on the New Jersey coast. Beckett seemed to enjoy himself, but he wasn't so interested in the video about the history of the elephant, and we didn't get much of it either since he was running up to everyone and saying "hi." But we climbed up into the belly of the beast, a piece of New Jersey history that has served as a real estate office, a summer home, and a tavern. From the top of the elephant there's a lovely view of the shore.
Beckett does not travel well. He's having a hard time getting to sleep, and we're very tired. But Beckett is enjoying playing with Grandpa Oscar, Grandma Pat, and great-aunt Judy.
I played a game with him today in which I chased him around, and he loved it. He kept crashing into things, but it's hard to know if it's a weakness in his peripheral vision or just him being not so coordinated. The latter seems more likely.
We still haven't heard from Stanford about a date for the surgery and the first chemo. We will call them again soon if we don't hear.
Thursday, July 26, 2007
Sunday, July 22, 2007
Getting Ready to Leave for England
Beckett continues to be just fine. Since he has started to sign, his communication is really improving, too. Not that he couldn't communicate before, but he has had some trouble sometimes making himself understood (for example, he has trouble saying the letter 's').
Now he signs "Baby" and rocks his arms like he's holding one. Or he signs "silly" or "doll" or "home." I'm not even sure he knew these words two weeks ago. And he says his alphabet, sort of.
Beckett has no appetite to speak of, but that just seems to be because he is two. He takes one or two bites of food before saying "back" and pushing it away or even saying "bagosh" (garbage). We are trying to fatten him up a little bit before the chemo, but I think we would just settle for him eating more than a few bites of his food.
We are getting ready for our trip to New Jersey and then England. We are excited about Beckett seeing his grandparents and his cousins in New Jersey, and his British cousins, his aunt, and his uncle. And Cassie says that her sister has arranged for Beckett to go to his cousin's daycare on one or two days so that we can go out and explore London, maybe go to a museum.
We'll write again from the road and let everybody know how things are going.
Now he signs "Baby" and rocks his arms like he's holding one. Or he signs "silly" or "doll" or "home." I'm not even sure he knew these words two weeks ago. And he says his alphabet, sort of.
Beckett has no appetite to speak of, but that just seems to be because he is two. He takes one or two bites of food before saying "back" and pushing it away or even saying "bagosh" (garbage). We are trying to fatten him up a little bit before the chemo, but I think we would just settle for him eating more than a few bites of his food.
We are getting ready for our trip to New Jersey and then England. We are excited about Beckett seeing his grandparents and his cousins in New Jersey, and his British cousins, his aunt, and his uncle. And Cassie says that her sister has arranged for Beckett to go to his cousin's daycare on one or two days so that we can go out and explore London, maybe go to a museum.
We'll write again from the road and let everybody know how things are going.
Thursday, July 19, 2007
Some Background
Because what Beckett has sounds so much worse than it is, we should probably explain why Beckett has this tumor and how it is different from other kinds of tumors.
Beckett has neurofibromatosis type I (NF 1), a genetic mutation that causes nerves to spontaneously produce little bumps (benign tumors).
Many people have wildly wrong ideas about NF.
Medical programs report on the very rare extreme cases of NF, and TV shows get it totally wrong. Some people get bumps over part of their bodies, but the range of the disease is usually from mild to moderate. Most people with NF lead totally normal lives.
These bumps are often on the skin and are usually harmless. If they get annoying, some of them can be cut off. These tumors are usually not treated because they are not like cancer cells that can spread to other parts of the body.
Tumors on the optic nerve are actually fairly common in children with NF, somewhere between 15-50%. They are usually not treated either, because most will never grow. Some will grow and then shrink again.
Beckett's tumor, however, showed a lot of growth since his last MRI, which is the reason for treatment now. As we've said before, this is not a life-threatening tumor. It isn't cancer. If someone who didn't have NF had an optic glioma, it would be a lot more serious. If we could monitor Beckett's vision closely, we might not be treating it either, but it's hard to gauge vision in a two-year-old.
For more information about Type I Neurofibromatosis, visit the Harvard Medical School Center for Neurofibromatosis and Allied Disorders here.
Beckett has neurofibromatosis type I (NF 1), a genetic mutation that causes nerves to spontaneously produce little bumps (benign tumors).
Many people have wildly wrong ideas about NF.
Medical programs report on the very rare extreme cases of NF, and TV shows get it totally wrong. Some people get bumps over part of their bodies, but the range of the disease is usually from mild to moderate. Most people with NF lead totally normal lives.
These bumps are often on the skin and are usually harmless. If they get annoying, some of them can be cut off. These tumors are usually not treated because they are not like cancer cells that can spread to other parts of the body.
Tumors on the optic nerve are actually fairly common in children with NF, somewhere between 15-50%. They are usually not treated either, because most will never grow. Some will grow and then shrink again.
Beckett's tumor, however, showed a lot of growth since his last MRI, which is the reason for treatment now. As we've said before, this is not a life-threatening tumor. It isn't cancer. If someone who didn't have NF had an optic glioma, it would be a lot more serious. If we could monitor Beckett's vision closely, we might not be treating it either, but it's hard to gauge vision in a two-year-old.
For more information about Type I Neurofibromatosis, visit the Harvard Medical School Center for Neurofibromatosis and Allied Disorders here.
Wednesday, July 18, 2007
Signing Time
We will keep updating the blog between now and when we start chemo so that everyone will know we are doing fine and so that we will stay in the habit of updating it.
Beckett has a new favorite TV show. We recently bought the DVDs for the show "Signing Time," and it's one of the best kids' shows we've seen.
Don't worry, there' s nothing wrong with Beckett's ears. The series, designed for hearing kids and parents, teaches simple American Sign Language through singing and animation. Beckett loves it, and he's also learned some new vocabulary and a few new signs. He said "I love you" (sort of, it sounds more like "lalu") for the first time after watching the Signing Time video about family.
We can't say enough about this series, and we've been inspired by the story behind it. Rachel de Azevedo Coleman, who created this program, learned to sign after one of her daughters was born deaf and another daughter was born with spina bifida and cerebral palsy. You can read her story here.
Beckett has a new favorite TV show. We recently bought the DVDs for the show "Signing Time," and it's one of the best kids' shows we've seen.
Don't worry, there' s nothing wrong with Beckett's ears. The series, designed for hearing kids and parents, teaches simple American Sign Language through singing and animation. Beckett loves it, and he's also learned some new vocabulary and a few new signs. He said "I love you" (sort of, it sounds more like "lalu") for the first time after watching the Signing Time video about family.
We can't say enough about this series, and we've been inspired by the story behind it. Rachel de Azevedo Coleman, who created this program, learned to sign after one of her daughters was born deaf and another daughter was born with spina bifida and cerebral palsy. You can read her story here.
Monday, July 16, 2007
Consultation with Dr. Fisher
We had been dreading today for a week, but of course it was a relief to finally talk to the doctor and have our questions answered. We both feel reassured.
Doctor Fisher told us what we already guessed. Beckett is going to have weekly chemotherapy for 60 weeks or so, with some weeks off. The drugs used in the chemotherapy are carboplatin and vincristine, some of the milder drugs as far as chemotherapy goes. We will bring him to Lucile Packard Hospital at Stanford, which is just over an hour away from us, every week for his treatments.
Even though Beckett's vision doesn't seem to be affected yet (although it's hard to tell, with a two year old), we saw the tumor and it had grown significantly compared to the last MRI. If we had been undecided about whether or not to give him chemo, this would certainly have convinced us, but we were already thinking that treatment was the right choice.
This a totally different kind of tumor from the type that can spread to other parts of your body. So, it's worth repeating that Beckett is not in any mortal danger, even though "brain tumor" sounds really, really bad. If it wasn't for the fact that it is in a very inconvenient location (the optic nerve) and that it had shown this quick growth, we wouldn't be treating it at all.
Apparently, Beckett will be able to do most, if not all, of the things that he normally does. He will be tired on the days when he gets chemo and maybe on the next day, but he should still be his normal self. The side effects should be fairly minimal, but they will be watching his blood counts closely. On days when his white cell counts are low, we might have to be a bit more careful.
A piece of good news is that we will still get to go on our trip to New Jersey and to England as planned. We will return on August 10th and Beckett will get his first treatment on the week of the 13th.
Beckett will get the drugs through a port that will be implanted in his chest. The port doesn't sound as bad as we had thought, either. There won't be anything visible on his skin except for maybe a slight bump; I had been afraid that there would be leads dangling out of him. The port just makes it a lot easier to hook up blood draws and administer the chemo since you don't have to look around for a vein each time. Getting the port is outpatient surgery, and he'll get it on the same day as his first chemo treatment.
Overall, we think we are in very good hands at Lucile Packard and with Dr. Fisher. We aren't looking forward to this, but we know it's the right decision. How hard it will be, we will discover.
Doctor Fisher told us what we already guessed. Beckett is going to have weekly chemotherapy for 60 weeks or so, with some weeks off. The drugs used in the chemotherapy are carboplatin and vincristine, some of the milder drugs as far as chemotherapy goes. We will bring him to Lucile Packard Hospital at Stanford, which is just over an hour away from us, every week for his treatments.
Even though Beckett's vision doesn't seem to be affected yet (although it's hard to tell, with a two year old), we saw the tumor and it had grown significantly compared to the last MRI. If we had been undecided about whether or not to give him chemo, this would certainly have convinced us, but we were already thinking that treatment was the right choice.
This a totally different kind of tumor from the type that can spread to other parts of your body. So, it's worth repeating that Beckett is not in any mortal danger, even though "brain tumor" sounds really, really bad. If it wasn't for the fact that it is in a very inconvenient location (the optic nerve) and that it had shown this quick growth, we wouldn't be treating it at all.
Apparently, Beckett will be able to do most, if not all, of the things that he normally does. He will be tired on the days when he gets chemo and maybe on the next day, but he should still be his normal self. The side effects should be fairly minimal, but they will be watching his blood counts closely. On days when his white cell counts are low, we might have to be a bit more careful.
A piece of good news is that we will still get to go on our trip to New Jersey and to England as planned. We will return on August 10th and Beckett will get his first treatment on the week of the 13th.
Beckett will get the drugs through a port that will be implanted in his chest. The port doesn't sound as bad as we had thought, either. There won't be anything visible on his skin except for maybe a slight bump; I had been afraid that there would be leads dangling out of him. The port just makes it a lot easier to hook up blood draws and administer the chemo since you don't have to look around for a vein each time. Getting the port is outpatient surgery, and he'll get it on the same day as his first chemo treatment.
Overall, we think we are in very good hands at Lucile Packard and with Dr. Fisher. We aren't looking forward to this, but we know it's the right decision. How hard it will be, we will discover.
Wednesday, July 11, 2007
Beckett's MRI
On Monday we had a call from Beckett's neuro-oncologist. Since he had just had an MRI, this couldn't be good. Dr. Paul Fisher told us that the tumor on Beckett's optic nerve had grown surprisingly since the last MRI. Of the 25 doctors on the tumor board which reviews patient MRIs, everyone agreed that it should be treated, and the likely treatment is chemotherapy.
The good news is that Beckett's life is not in any danger. The chemotherapy will be very hard for him and for us, but it is necessary to protect his vision and to prevent further problems. We have 100% confidence in Dr. Fisher, and he seemed to think that this was a problem that could be solved.
About 55% of the time, chemo stops the growth of this type of tumor. 30% of the time, the tumor actually shrinks, and 15% of the time the tumor keeps growing. But even in that case, I'm sure there are other treatments available.
This is all very new to us and we are just trying to figure out the logistics of how chemo will work. We'll know more after Monday when we will talk to Dr. Fisher in depth, and I'll post what I find out on this page.
The good news is that Beckett's life is not in any danger. The chemotherapy will be very hard for him and for us, but it is necessary to protect his vision and to prevent further problems. We have 100% confidence in Dr. Fisher, and he seemed to think that this was a problem that could be solved.
About 55% of the time, chemo stops the growth of this type of tumor. 30% of the time, the tumor actually shrinks, and 15% of the time the tumor keeps growing. But even in that case, I'm sure there are other treatments available.
This is all very new to us and we are just trying to figure out the logistics of how chemo will work. We'll know more after Monday when we will talk to Dr. Fisher in depth, and I'll post what I find out on this page.
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