I've been asked a lot what people can do to help out the family during this awful time. Until yesterday I had very few ideas. Today I have a good one and I hope you will oblige.
Beatrice will not survive until Christmas. It was my one wish left that she would. But, no, that isn't possible.
So, Chris and I have bumped up the date. Bea is in a large hospital room that is set up for hospice care. We have decorated for Christmas and play seasonal music. Even though it's way early, please put one seasonal decoration out on display today and keep it out until the holidays are over. This will pay homage to the life and loves of our Sweet Bea.
Saturday, November 17, 2012
Friday, November 16, 2012
Sleep Revisted
Again, I wish I were asleep. But, I can't sleep. It's just not possible. My mind is racing with a thousand thoughts and nothing from moment to moment.
I wish Bea were at home, sleeping in our bed, nestled between me and Chris like she's been doing for months. She doesn't go to sleep that way. She goes to sleep in Lewis' bunk. Then in the middle of the night she wakes up and wants company. When she could walk she would enter our room on her own and climb into bed. When she could no longer do so she would call my name... mom. I would walk over to her, carry her into the room and tuck her in.
I'll never hear that again. Not from Bea. Not ever. Her weight is something I will not have to carry anymore, not that I ever complained. It was never a burden.
Bea will be moved to hospice today, at Scottish Rite. The doctors have done all they can for her. She will not awake. She will not speak. Her little body will not survive her cancer.
She has maybe a few days or possibly a week left. It is hard to tell. But, she is on her way and there is no stopping it. No amount of tears or blogging or making art or anything can stop it. It is happening.
I don't know if I'll post again or what I will have to say next. Again, I'm entering a world that I don't want to belong to. Gaining experiences that nobody wants. It is a living hell. There's no more apt symbol than that wretched place.
I wish Bea were at home, sleeping in our bed, nestled between me and Chris like she's been doing for months. She doesn't go to sleep that way. She goes to sleep in Lewis' bunk. Then in the middle of the night she wakes up and wants company. When she could walk she would enter our room on her own and climb into bed. When she could no longer do so she would call my name... mom. I would walk over to her, carry her into the room and tuck her in.
I'll never hear that again. Not from Bea. Not ever. Her weight is something I will not have to carry anymore, not that I ever complained. It was never a burden.
Bea will be moved to hospice today, at Scottish Rite. The doctors have done all they can for her. She will not awake. She will not speak. Her little body will not survive her cancer.
She has maybe a few days or possibly a week left. It is hard to tell. But, she is on her way and there is no stopping it. No amount of tears or blogging or making art or anything can stop it. It is happening.
I don't know if I'll post again or what I will have to say next. Again, I'm entering a world that I don't want to belong to. Gaining experiences that nobody wants. It is a living hell. There's no more apt symbol than that wretched place.
Wednesday, November 14, 2012
A Longer Stay Than Expected...
Bea is still at Scottish Rite Hospital and is not doing well. So far she has had 2 surgeries. The first was on Saturday to replace part of a faulty VP shunt. That fix went well. However, the shunt was fixed but was still not draining well. That's making her very sleepy all the time.
Her neurosurgeon relieved pressure in her brain on Sunday by tapping her shunt and taking off some fluid. Later that day she did improve some. She could eat, talk a little, smile and do some foamy sticker crafts. She also watched some cartoons and a movie with me. She was awake on and off for several hours. Everybody thought her issue was the shunt, for sure.
Monday was another story. She was not very responsive and spent most of the day sleeping. This is not a good symptom. A CT scan was done and showed that her ventricals were still not draining well. Her neurosurgeon said that she should have showed more improvement than she did and for the first time indicated that he was concerned that the issue was not just the shunt.
Her neurosurgeon revised her shunt temporarily to be an external shunt yesterday afternoon. The brain fluid has been draining well. She woke up for a couple of hours last night and was able to hold onto toys and watch cartoons but that's it. No food and no talking.
All of her doctors have now said her condition is likey a combination of the shunt not working and the cancer growing. Bea is going to have an MRI tomorrow to see where she's at with that.
It's almost 11am and she still hasn't woken up though. It's making me kind of insane. I mean, she woke up for maybe half a minute earlier and I got all excited. But, it was a tease and she went right back to sleep.
This is total hell. I'm terrified that she's never going to really wake up.
Her neurosurgeon relieved pressure in her brain on Sunday by tapping her shunt and taking off some fluid. Later that day she did improve some. She could eat, talk a little, smile and do some foamy sticker crafts. She also watched some cartoons and a movie with me. She was awake on and off for several hours. Everybody thought her issue was the shunt, for sure.
Monday was another story. She was not very responsive and spent most of the day sleeping. This is not a good symptom. A CT scan was done and showed that her ventricals were still not draining well. Her neurosurgeon said that she should have showed more improvement than she did and for the first time indicated that he was concerned that the issue was not just the shunt.
Her neurosurgeon revised her shunt temporarily to be an external shunt yesterday afternoon. The brain fluid has been draining well. She woke up for a couple of hours last night and was able to hold onto toys and watch cartoons but that's it. No food and no talking.
All of her doctors have now said her condition is likey a combination of the shunt not working and the cancer growing. Bea is going to have an MRI tomorrow to see where she's at with that.
It's almost 11am and she still hasn't woken up though. It's making me kind of insane. I mean, she woke up for maybe half a minute earlier and I got all excited. But, it was a tease and she went right back to sleep.
This is total hell. I'm terrified that she's never going to really wake up.
Monday, November 12, 2012
Some Days at Scottish Rite
Bea has been at Scottish Rite Hospital since Satuday morning. Her symptoms were worse and worse almost by the hour last week and so Chris and I took her to the ER. She was constantly sleeping and could hardly sit herself up. Her speech was disappearing, too. My suspicion was that her shunt was broken. And, well, it was.
She had a partial replacement of the shunt on Saturday that is not working up to par. Her improvment has been slight so the neurosurgeon will be investigating further today. She is talking a little but is still very weak and lethargic. When a VP shunt is replaced the change you see is almost immediate - if it's successful.
Her hydrosephalus is entirely treatable here and we'll be going home soon but really, really unfortunate. For Bea to survive this horrible disease would in almost every sense be a miracle. And so we want her days to be as healthy as possible so she can enjoy every possible minute.
She had a partial replacement of the shunt on Saturday that is not working up to par. Her improvment has been slight so the neurosurgeon will be investigating further today. She is talking a little but is still very weak and lethargic. When a VP shunt is replaced the change you see is almost immediate - if it's successful.
Her hydrosephalus is entirely treatable here and we'll be going home soon but really, really unfortunate. For Bea to survive this horrible disease would in almost every sense be a miracle. And so we want her days to be as healthy as possible so she can enjoy every possible minute.
Friday, October 26, 2012
Lots of Updates
OK, so a lot has happened in the past month so I'm just going to post a list of it all. It'll be a mix of good, bad and in-between with running commentary per list, depending on how strongly I feel about it today. It won't be in chronological order either.
1. Kiki from the Fresh Beat Band called Bea a couple of days ago and was as sweet as can be. Bea was thrilled to talk to her. And, a package from the band arrived today full of fun things for the kids. Bea gave whatever didn't fit or she didn't want to Lewis. He was happy to get the scraps.
2. As of yesterday Bea is formally out of the Pittsburgh trial. I have no idea when the decision was made. The team that runs this trial never told us specifically. I found out from Bea's neuro-oncologist in Atlanta. I'm disappointed at this treatment of Bea and our family. My guess is that this decision was made a couple of weeks ago and I'd like to have that time back. We need it to figure out what's happening next and time is something we may not have much of.
3. Bea is being home schooled and has an amazing tutor. As long as she's on steroids there will be no school for her but, honestly, with the way she's holding on physically right now, I don't see her going back unless we find another therapy that can either cure or give her another "honeymoon".
4. She has regressed significantly since her birthday and can no longer stand on her own, much less walk. She is on steroids and the dosage is being reduced bit by bit. So far, that's been OK. But, she's visibly very, very sick. She has been stable for the past 2 weeks but that's about as good as I can say. Today she cannot walk or sit for long periods of time. She drools constantly. Her right side is almost completely numb. She has trouble with bowel movements and that upsets her more than anything else.
4. Bea has a swallow study on Monday to determine if any food or drink is going down her airway. If that's the case we will have to change her diet immediately. Her doctor here thinks it's possible because her voice often sounds watery.
5. We took Bea to Disney for her birthday. It was a pretty good trip but not as magical as in May, when Bea was almost totally healthy. Also, Chris got food poisoning and, well, a couple of days weren't pretty. But, Bea did get to meet Minnie Mouse and Pluto. She got to go on safari and bought another half dozen stuffed animals. So, she and Lewis came home happy.
6. We have found 1 open study at the NIH and are in discussions to participate. There are 2 other studies open, one of which she is not eligible for yet. I'm waiting to hear back from the other. Both could be good. Last year I would have said there's no way we're going to take her from trial to trial. However, Bea has been asking some more specific questions lately about her physical state. She has not asked about death but seems more interested in finding a way to get healthy again. She is very keen to do so and I feel that if this is her wish then we have to do it and take another shot with a new trial.
7. Bea had her first "art show" at our yardsale 2 weeks ago. Our next door neighbor organizes a neighborhood wide yardsale every couple of years and we always participate. Bea asked to sell her art at the sale and I told her that I'd do better and put up an art show for her. She sold several pieces to friends of ours and even one lovely lady who was just looking for a bargain! Bea was thrilled and used some of her earnings to buy a toy the next day. Lewis also sold some of his old toys and was given that money to buy a new toy as well (with a few bucks thrown in from mom).
8. Bea is back to making art but not freehand drawing. We have found that stencils and stamps and colorful tape are great ways for her to make art with her limited physical abilities. She can't make art all day like over the summer but she still enjoys it and I'm glad she and I found something creative that she can do.
So, it's a lot to put in writing but it's been awhile and, honestly, I'm pretty burned out. For some weeks it seemed that Bea had a new issue every day and I spent a lot of time catching up with them. And, now I'm waiting for the other shoe to drop.
1. Kiki from the Fresh Beat Band called Bea a couple of days ago and was as sweet as can be. Bea was thrilled to talk to her. And, a package from the band arrived today full of fun things for the kids. Bea gave whatever didn't fit or she didn't want to Lewis. He was happy to get the scraps.
2. As of yesterday Bea is formally out of the Pittsburgh trial. I have no idea when the decision was made. The team that runs this trial never told us specifically. I found out from Bea's neuro-oncologist in Atlanta. I'm disappointed at this treatment of Bea and our family. My guess is that this decision was made a couple of weeks ago and I'd like to have that time back. We need it to figure out what's happening next and time is something we may not have much of.
3. Bea is being home schooled and has an amazing tutor. As long as she's on steroids there will be no school for her but, honestly, with the way she's holding on physically right now, I don't see her going back unless we find another therapy that can either cure or give her another "honeymoon".
4. She has regressed significantly since her birthday and can no longer stand on her own, much less walk. She is on steroids and the dosage is being reduced bit by bit. So far, that's been OK. But, she's visibly very, very sick. She has been stable for the past 2 weeks but that's about as good as I can say. Today she cannot walk or sit for long periods of time. She drools constantly. Her right side is almost completely numb. She has trouble with bowel movements and that upsets her more than anything else.
4. Bea has a swallow study on Monday to determine if any food or drink is going down her airway. If that's the case we will have to change her diet immediately. Her doctor here thinks it's possible because her voice often sounds watery.
5. We took Bea to Disney for her birthday. It was a pretty good trip but not as magical as in May, when Bea was almost totally healthy. Also, Chris got food poisoning and, well, a couple of days weren't pretty. But, Bea did get to meet Minnie Mouse and Pluto. She got to go on safari and bought another half dozen stuffed animals. So, she and Lewis came home happy.
6. We have found 1 open study at the NIH and are in discussions to participate. There are 2 other studies open, one of which she is not eligible for yet. I'm waiting to hear back from the other. Both could be good. Last year I would have said there's no way we're going to take her from trial to trial. However, Bea has been asking some more specific questions lately about her physical state. She has not asked about death but seems more interested in finding a way to get healthy again. She is very keen to do so and I feel that if this is her wish then we have to do it and take another shot with a new trial.
7. Bea had her first "art show" at our yardsale 2 weeks ago. Our next door neighbor organizes a neighborhood wide yardsale every couple of years and we always participate. Bea asked to sell her art at the sale and I told her that I'd do better and put up an art show for her. She sold several pieces to friends of ours and even one lovely lady who was just looking for a bargain! Bea was thrilled and used some of her earnings to buy a toy the next day. Lewis also sold some of his old toys and was given that money to buy a new toy as well (with a few bucks thrown in from mom).
8. Bea is back to making art but not freehand drawing. We have found that stencils and stamps and colorful tape are great ways for her to make art with her limited physical abilities. She can't make art all day like over the summer but she still enjoys it and I'm glad she and I found something creative that she can do.
So, it's a lot to put in writing but it's been awhile and, honestly, I'm pretty burned out. For some weeks it seemed that Bea had a new issue every day and I spent a lot of time catching up with them. And, now I'm waiting for the other shoe to drop.
Tuesday, October 9, 2012
Another Update / A Bea Event, Kind of
Bea is home. And, that's the good news. She's happy to be home and that's the great news.
Other than that, well, there is not a lot of really good news to share. Dr. Jackaki, Bea's trial doctor, told Chris that the mass (tumor) has increased in size. It is smaller than when she started the trial but larger than her last scan. The MRI gives some detail but not enough to determine if the mass is too many good Tcells, bad cancer cells or both. Her gut says it's the cancer.
Bea had a sodium scan to see if that could provide more detail. The results should be in within a few days. They could be inconclusive, too.
What will be conclusive is the effect the steroids she will start taking today. If the steroids cause a significant improvement that means it's the Tcells. Tcells are the body's immune cells and steroids make them go away. Supposedly fairlly quickly. If Bea's improvement is modest then it will indicate that the growth is cancer.
Either way, I've taken Bea out of school indefinitely. The steroids pretty much destroy one's immune system so sending her to gradeschool would be irresponsible. I mean, she'd get every bug on every kid there and not have the ability to get rid of it on her own. So, that was an easy decision.
So, we're in a wait and see mode... again. Dr. Jackaki suggested we consider a second clinical trial at MD Anderson for Bea, if this one doesn't work out.
Now a change of editorial direction... our neighborhood is having a yard sale Friday and Saturday from 8-2 with supposedly 20+ houses participating. I'm doing it because it's always fun and I can sell off all of those things we don't use or fit into anymore that clutter our house.
Bea asked if she could sell her art and I said I'd make a little art show for her. Not everything will be for sale. I'm going to display a few of my favorites that are on display in the house but that I'd like to show for her. But, most will be available for purchase. If any of you have a hankering for some art or want to come see it or just want to see what me and my neighbors are selling off, please come by.
The neighborhood is Woodstream at Blackjack Hills in Marietta. The main corridor through the neighbhorhood is Rockcrest Drive, right off of Allgood Road.
Other than that, well, there is not a lot of really good news to share. Dr. Jackaki, Bea's trial doctor, told Chris that the mass (tumor) has increased in size. It is smaller than when she started the trial but larger than her last scan. The MRI gives some detail but not enough to determine if the mass is too many good Tcells, bad cancer cells or both. Her gut says it's the cancer.
Bea had a sodium scan to see if that could provide more detail. The results should be in within a few days. They could be inconclusive, too.
What will be conclusive is the effect the steroids she will start taking today. If the steroids cause a significant improvement that means it's the Tcells. Tcells are the body's immune cells and steroids make them go away. Supposedly fairlly quickly. If Bea's improvement is modest then it will indicate that the growth is cancer.
Either way, I've taken Bea out of school indefinitely. The steroids pretty much destroy one's immune system so sending her to gradeschool would be irresponsible. I mean, she'd get every bug on every kid there and not have the ability to get rid of it on her own. So, that was an easy decision.
So, we're in a wait and see mode... again. Dr. Jackaki suggested we consider a second clinical trial at MD Anderson for Bea, if this one doesn't work out.
Now a change of editorial direction... our neighborhood is having a yard sale Friday and Saturday from 8-2 with supposedly 20+ houses participating. I'm doing it because it's always fun and I can sell off all of those things we don't use or fit into anymore that clutter our house.
Bea asked if she could sell her art and I said I'd make a little art show for her. Not everything will be for sale. I'm going to display a few of my favorites that are on display in the house but that I'd like to show for her. But, most will be available for purchase. If any of you have a hankering for some art or want to come see it or just want to see what me and my neighbors are selling off, please come by.
The neighborhood is Woodstream at Blackjack Hills in Marietta. The main corridor through the neighbhorhood is Rockcrest Drive, right off of Allgood Road.
Monday, October 8, 2012
Bea Update
Bea is in Pittsburgh today with her dad, getting an MRI and hopefully receiving her 8th vaccine. However, I have my doubts that this will happen today.
Bea has severely regressed in the last 2-3 weeks. At her birthday party she was able to walk around, a lot on her own, and only needed a wheelchair for long distances and to stay safe at school.
Today is a different story. She can't walk on her own. She can stand on her own but only if she's holding onto something with her left hand. And even that isn't for a very long spell. If she tried to walk on her own she would collapse in one step. Her right hand and foot are completely numb. Her left foot and hand are starting to become numb now as well. She can't dress herself or go to the toilet without help. She can't draw and has trouble feeding herself.
She drools constantly out of the right side of her mouth and her speech has slowed. She's more easily fatigued and her eyesight goes blurry now and again. I'm pretty sure her right eye is blurry all the time but she just can't tell.
And she has become fearful to tell me when something about her body changes because she doesn't want to go the hospital for a stay.
So, she's in a pretty bad state. There could be 3 causes - in combination or solo. The cancer may be having a growth. DIPG cancer grows in fits and spurts, which is frustrating. It either grows really fast or not at all and it starts and stops for no apparent reason. It could be her Tcells massing and causing significant swelling. That would mean the vaccine is causing the harm. It also could be that the shunt put in at the end of August is faulty and the hydrosephalus is not being treated. The purpose of the shunt is to treat this condition, also called "water on the brain." It could be all but if it's not it's definitely one of them.
My guess about what will happen today is that she will be sent home on steroids to treat her symptoms and provide her with some temporary relief. That means no school because they squash her immune system. They also make the vaccine not work at all.
If the shunt is faulty she'll probably stay in Pittsburgh for a few days to have that replaced.
So, today Bea is not doing well. Not at all. So, although I'm not a big prayer person I do believe in something so if you're a believer in something send those thoughts, prayers, whatever her way. She really needs them.
Bea has severely regressed in the last 2-3 weeks. At her birthday party she was able to walk around, a lot on her own, and only needed a wheelchair for long distances and to stay safe at school.
Today is a different story. She can't walk on her own. She can stand on her own but only if she's holding onto something with her left hand. And even that isn't for a very long spell. If she tried to walk on her own she would collapse in one step. Her right hand and foot are completely numb. Her left foot and hand are starting to become numb now as well. She can't dress herself or go to the toilet without help. She can't draw and has trouble feeding herself.
She drools constantly out of the right side of her mouth and her speech has slowed. She's more easily fatigued and her eyesight goes blurry now and again. I'm pretty sure her right eye is blurry all the time but she just can't tell.
And she has become fearful to tell me when something about her body changes because she doesn't want to go the hospital for a stay.
So, she's in a pretty bad state. There could be 3 causes - in combination or solo. The cancer may be having a growth. DIPG cancer grows in fits and spurts, which is frustrating. It either grows really fast or not at all and it starts and stops for no apparent reason. It could be her Tcells massing and causing significant swelling. That would mean the vaccine is causing the harm. It also could be that the shunt put in at the end of August is faulty and the hydrosephalus is not being treated. The purpose of the shunt is to treat this condition, also called "water on the brain." It could be all but if it's not it's definitely one of them.
My guess about what will happen today is that she will be sent home on steroids to treat her symptoms and provide her with some temporary relief. That means no school because they squash her immune system. They also make the vaccine not work at all.
If the shunt is faulty she'll probably stay in Pittsburgh for a few days to have that replaced.
So, today Bea is not doing well. Not at all. So, although I'm not a big prayer person I do believe in something so if you're a believer in something send those thoughts, prayers, whatever her way. She really needs them.
Subscribe to:
Posts (Atom)