I meant to get on here sooner for this update, but had some things on my schedule this weekend and then I ended up getting a nasty head cold and spent 1/2 of Sunday in bed!
On Thursday, Aly happened to have one of her facial episodes at home! Finally! She was playing her flute and yelled for me, as best she could with a jaw lock. I grabbed my phone ( everyone needs an iphone!) and recorded the episode. Yeah, it was one of the craziest things I've seen. It looked like the whole left side of Aly's face was pulled towards her ear. Her lips were pulled crooked, and her eyelid was stuck shut. It took a couple of minutes for everything to start relaxing and at that point I could see several areas twitching. Poor girl! I can see why it is so frightening! As soon as I got the video, I sent it to the neurologist, whom we saw earlier in the week. She called Friday evening and added a new term to this muscle spasm. Hemimasticatory Spasm. Yeah, nothing ever has an easy name in the medical world. She thanked me for sending the video as it was the first time any of the doctors had seen a complete episode. The good thing is that she is still adamant that it is related to the radiation and should go away without further treatment. If it doesn't, there are still options but we'll let it go for a little while. Hopefully, they will continue to get fewer and farther in between.
Monday, February 20, 2012
Wednesday, February 15, 2012
Valentine's Day was interesting to say the least...
Did any of you ever watch Arsenio Hall when he did the "Things that make you go hmmm" segments? I did a lot of thinking yesterday and a lot of things made me say, "hmmm."
It started off with my sweet girl giving me a homemade valentine. The front said, "I Love You." Inside it said, "you make me laugh even when I didn't think I could." That was my first "hmmm" of the day. I thought about that a lot and became rather perplexed about it. I didn't have time to talk with Aly and ask her what it meant, because I was working early so I could leave early for her appointment and Tom took her to school. I thought about it the whole time I was at work. It was one of those things where if you had the time you'd want to take the day off and have a discussion with your kids and figure out where their head is at. I was glad I had to leave early to pick Aly up for an appointment. When I got to the school to pick her up, she had just had one of her facial tightening episodes so that distracted me and I didn't want to get into a discussion on our way to the Dr., so I waited until after her appointment.
The facial episode was the 2nd, "hmmm". I was glad we were going to see a neurologist. She was the one that went over Aly's EEG results and we were hoping we'd get more insight as to what was going on. We got to the clinic and of course, as usual ended up waiting about 1/2 an hour for the dr. to show up. At least the clinic had some valentine activities to do. They had cookies to decorate and the odd thing was that they had syringes full of frosting for each cookie, so Aly shot the frosting onto the cookie. Fun, but odd at the same time. Our child life friend Jody told us they try to do things like that so the kids can get more comfortable around needles. Yep, insert the next "hmmm" here.
Anyways, the neurologist was an odd duck. You know how when someone walks in the room you just get that feeling? She was nice, but oh was she a talker! I could go on for days with what she talked about. We didn't leave the clinic until a little after one, so she went on for a good hour. I left there feeling confused and it did not give us ANY answers. Long story short is that Aly's symptoms do not fit one certain neurological condition. Some of the symptoms lend themselves to Dystonia, but the other symptoms don't fit. Some of the symptoms lend themselves to I think what she called slepharospasm, but others don't fit that either. She then gave us options. We could do nothing and see if this works itself out. We could increase the dosage of muscle relaxant which obviously didn't help because Aly still had the muscle spasms. The problem with increasing that dosage is it could hinder Aly's memory and balance and just make her feel funky. We could try a different medication which targets the nerves but it has to be taken several times a day and again, no guarantee it would work. Botox was thrown in the mix, but with Aly's random symptoms and each episode being different, they really don't know what muscles are involved. So, nothing was decided. Here comes another "hmmm." I really just wonder if Aly is such a medical mystery or what the deal is. The neurologist would like us to try to catch an episode on tape, but they have yet to happen at home, and they don't last long so it is difficult. We've decided to let things go for a while longer and see what happens. I don't like mixing more drugs into Aly's little body when we aren't even sure they'll help.
Anyways, back to the valentine card. I asked Aly on our car trip home what she meant. She told me that I would make her laugh when she was stuck in the hospital, upset about being there. I asked why she was thinking about being in the hospital. She said she'd been thinking about cancer a lot lately. That she's scared it will come back. Luke's passing and what he went through has been weighing on her this week. To know that you can be young and die of cancer...UGH! She has also been struggling with why?
It is hard to know what to say to that. I hope I chose the right words to calm her mind. Sometimes it is really tough being a parent! I told her there are so many things that can happen, but you have to remain positive and not think about them. I reminded her that when she was first diagnosed we were told her type of cancer had an 85% cure rate and I told her to think of what a big number that is out of 100. That her odds are good that it will never come back. I also tried to tackle the "why". I told her I believe that cancer is not something that God created or gives people. I do believe that everything you go through shapes your path in life. She has been talking a lot about wanting to be a child life specialist when she gets older. I reminded her of that and the fact that if she hadn't been through this ordeal, she probably wouldn't think about doing that and helping other kids. It's tough that some kids have to deal with such an illness. It has made Aly mature quickly and learn things many people will never learn in their lifetime. Sometimes I think it makes it harder for her to relate to other kids because she has dealt with so much.
I keep praying that things will get easier for her and hope that there will be medical advances that will help with her vision and pituitary issues. It still boggles my mind that she will need to take the medications she does for the rest of her life. She deals with most things so incredibly well...I sometimes forget that she is only 10!
It started off with my sweet girl giving me a homemade valentine. The front said, "I Love You." Inside it said, "you make me laugh even when I didn't think I could." That was my first "hmmm" of the day. I thought about that a lot and became rather perplexed about it. I didn't have time to talk with Aly and ask her what it meant, because I was working early so I could leave early for her appointment and Tom took her to school. I thought about it the whole time I was at work. It was one of those things where if you had the time you'd want to take the day off and have a discussion with your kids and figure out where their head is at. I was glad I had to leave early to pick Aly up for an appointment. When I got to the school to pick her up, she had just had one of her facial tightening episodes so that distracted me and I didn't want to get into a discussion on our way to the Dr., so I waited until after her appointment.
The facial episode was the 2nd, "hmmm". I was glad we were going to see a neurologist. She was the one that went over Aly's EEG results and we were hoping we'd get more insight as to what was going on. We got to the clinic and of course, as usual ended up waiting about 1/2 an hour for the dr. to show up. At least the clinic had some valentine activities to do. They had cookies to decorate and the odd thing was that they had syringes full of frosting for each cookie, so Aly shot the frosting onto the cookie. Fun, but odd at the same time. Our child life friend Jody told us they try to do things like that so the kids can get more comfortable around needles. Yep, insert the next "hmmm" here.
Anyways, the neurologist was an odd duck. You know how when someone walks in the room you just get that feeling? She was nice, but oh was she a talker! I could go on for days with what she talked about. We didn't leave the clinic until a little after one, so she went on for a good hour. I left there feeling confused and it did not give us ANY answers. Long story short is that Aly's symptoms do not fit one certain neurological condition. Some of the symptoms lend themselves to Dystonia, but the other symptoms don't fit. Some of the symptoms lend themselves to I think what she called slepharospasm, but others don't fit that either. She then gave us options. We could do nothing and see if this works itself out. We could increase the dosage of muscle relaxant which obviously didn't help because Aly still had the muscle spasms. The problem with increasing that dosage is it could hinder Aly's memory and balance and just make her feel funky. We could try a different medication which targets the nerves but it has to be taken several times a day and again, no guarantee it would work. Botox was thrown in the mix, but with Aly's random symptoms and each episode being different, they really don't know what muscles are involved. So, nothing was decided. Here comes another "hmmm." I really just wonder if Aly is such a medical mystery or what the deal is. The neurologist would like us to try to catch an episode on tape, but they have yet to happen at home, and they don't last long so it is difficult. We've decided to let things go for a while longer and see what happens. I don't like mixing more drugs into Aly's little body when we aren't even sure they'll help.
Anyways, back to the valentine card. I asked Aly on our car trip home what she meant. She told me that I would make her laugh when she was stuck in the hospital, upset about being there. I asked why she was thinking about being in the hospital. She said she'd been thinking about cancer a lot lately. That she's scared it will come back. Luke's passing and what he went through has been weighing on her this week. To know that you can be young and die of cancer...UGH! She has also been struggling with why?
It is hard to know what to say to that. I hope I chose the right words to calm her mind. Sometimes it is really tough being a parent! I told her there are so many things that can happen, but you have to remain positive and not think about them. I reminded her that when she was first diagnosed we were told her type of cancer had an 85% cure rate and I told her to think of what a big number that is out of 100. That her odds are good that it will never come back. I also tried to tackle the "why". I told her I believe that cancer is not something that God created or gives people. I do believe that everything you go through shapes your path in life. She has been talking a lot about wanting to be a child life specialist when she gets older. I reminded her of that and the fact that if she hadn't been through this ordeal, she probably wouldn't think about doing that and helping other kids. It's tough that some kids have to deal with such an illness. It has made Aly mature quickly and learn things many people will never learn in their lifetime. Sometimes I think it makes it harder for her to relate to other kids because she has dealt with so much.
I keep praying that things will get easier for her and hope that there will be medical advances that will help with her vision and pituitary issues. It still boggles my mind that she will need to take the medications she does for the rest of her life. She deals with most things so incredibly well...I sometimes forget that she is only 10!
Saturday, February 11, 2012
quick results
Well, Aly's very dedicated cancer doctor called us last night, after hours, to report the findings of the EEG test. It was nice that we didn't have to wait the 3 days we were expecting. After reviewing the test, seizure activity was definitely ruled out. They still are sticking with the assumption that these are muscle/nerve spasms related to radiation. They should decrease with time and hopefully go away all together. The neurologist said it is not uncommon to see such symptoms. She said it is a little uncommon for the eyes to be affected, but uncommon has been the par for the course with Miss Aly.
I'd have to say since her tumor was sitting on the optic nerves and that was the target for the radiation, it seems rather logical that her eyes would be involved. That's just my opinion...
Anyways, they feel a muscle relaxant may help a bit, so we are adding another pill to her regimen for a little while.
Please also join us in praying for Luke Letellier's family today and in the days to come. Luke passed away early this morning. He has joined the strong team of cancer angels.
I'd have to say since her tumor was sitting on the optic nerves and that was the target for the radiation, it seems rather logical that her eyes would be involved. That's just my opinion...
Anyways, they feel a muscle relaxant may help a bit, so we are adding another pill to her regimen for a little while.
Please also join us in praying for Luke Letellier's family today and in the days to come. Luke passed away early this morning. He has joined the strong team of cancer angels.
Friday, February 10, 2012
Friday
Well, it was easy to remain awake until midnight, not so easy getting back up at 4 am. Tom had senior night at hockey so that took us to 9:30. We came home and chatted with Tom until about 10:30. Then Aly and I pulled out the Monopoly board until 12:00. I recently taught her how to play, so she wants to play all the time now! The night goes quickly when that alarm goes off at 4! We sat in bed this morning and watched tv for a while then departed at 6:30 am.
We made it safely to St. Paul. No traffic congestion so we got there at 7:30am. Thankfully the clinic lobby is right in front of you as you walk off the elevator because the lobby was still dark when we got there. We beat the employees to work! We sat in partial darkness by a big row of windows and waited patiently.
They checked us in about 7:50 and the test got started about 8:30. The tech had minor trouble getting the little electrodes to read, so she had to play with them and reposition before getting started. It was actually a 2 hour long test. I thought it was going to be about an hour. We were there until 11am.
Thankfully, they were able to produce some of the similar symptoms, Aly has experienced, during this test. Aly had her eyes closed through most of the test, so I'm not sure if that made a difference and maybe that's why they didn't get the eyes closing symptom. At a couple of points they had Aly take deep, quick breaths like she would after exercising. She was told to blow at a pinwheel to keep it moving, and at that point Aly's jaw locked up on both sides and her face felt tight on the right side. I am hoping that maybe they will be able to figure out what is going on now. It does prove that it has something to do when she exerts herself. Most of the episodes have happened in gym class or band, after playing her flute, so it has to be somehow related to the deep, quick breathing.
The tech has to send the test on to the doctor for translation. We were told it would take 3-5 business days to get results. So, patiently we wait.
We both took naps this afternoon and now feel a little disoriented as to what time of day it is. Even with that, Aly is looking forward to sleeping over at a friend's house tonight!
We made it safely to St. Paul. No traffic congestion so we got there at 7:30am. Thankfully the clinic lobby is right in front of you as you walk off the elevator because the lobby was still dark when we got there. We beat the employees to work! We sat in partial darkness by a big row of windows and waited patiently.
They checked us in about 7:50 and the test got started about 8:30. The tech had minor trouble getting the little electrodes to read, so she had to play with them and reposition before getting started. It was actually a 2 hour long test. I thought it was going to be about an hour. We were there until 11am.
Thankfully, they were able to produce some of the similar symptoms, Aly has experienced, during this test. Aly had her eyes closed through most of the test, so I'm not sure if that made a difference and maybe that's why they didn't get the eyes closing symptom. At a couple of points they had Aly take deep, quick breaths like she would after exercising. She was told to blow at a pinwheel to keep it moving, and at that point Aly's jaw locked up on both sides and her face felt tight on the right side. I am hoping that maybe they will be able to figure out what is going on now. It does prove that it has something to do when she exerts herself. Most of the episodes have happened in gym class or band, after playing her flute, so it has to be somehow related to the deep, quick breathing.
The tech has to send the test on to the doctor for translation. We were told it would take 3-5 business days to get results. So, patiently we wait.
We both took naps this afternoon and now feel a little disoriented as to what time of day it is. Even with that, Aly is looking forward to sleeping over at a friend's house tonight!
Thursday, February 9, 2012
EEG testing
Well, Aly is feeling fine but continues to have the jaw locks and has had a few more episodes where muscles in her face tighten up and her eyes close. She is unable to control it. She had an episode today, while in gym class at school. She felt her eyes starting to twitch so she stopped what she was doing and headed to the nurse. Her eyes closed and her face tightened and she said her chin felt numb. These episodes are sporadic. It is frightening to Aly, because it is something her body is doing that she cannot control. She was upset today and talked with the nurse and the school counselor after it happened. She wanted to come home early so I went and picked her up. I can only imagine what it would be like to be aware that something is happening and not being able to do anything about it.
She'll go days without them happening, but she's now had 2 this week. The doctors are stumped. They still feel it may be a side affect from the radiation, but it is unclear. Aly's cancer doctor talked with a neurologist and they want to do an EEG test just to see if that may help give some answers. It was just scheduled today, for tomorrow morning at Children's in St. Paul. With this test, Aly has to be sleep deprived. For some reason, with this test, they feel there is a better chance to catch one of these episodes if there is a lack of sleep. So, we have to keep Aly awake until midnight tonight and then let her sleep for about 4 hours and wake her up. I'm really looking forward to rush hour on 4 hours of sleep! Look out St. Paul, here I come!
I tried to help calm Aly's nerves. Oh, that is a bad play on words... She's got to remember all she's been through and the fact that she had surgery on her brain and the chemo and radiation (POISON) that have also been aimed at her brain, I'm sure has something to do with this. The nerves in her brain had to have been affected in one way or another. I just hope they find some answers. It is really frustrating to tell Aly there is nothing that can be done at this point. Please continue to keep Aly in your prayers.
On a side note...Aly's hair is growing back in! She looks like she's got old man's syndrome with a large round patch on the top of her head that is still bald. It is slowly filling in, but that is where the radiation dose entered her head, so that will be the last to grow. The hair that is growing is REALLY dark! Like almost black, dark. It is much darker than when it started to grow back after chemo and before radiation. It will be interesting to see if it stays that way or gets lighter as it grows. Aly said she wants her blonde back!
She'll go days without them happening, but she's now had 2 this week. The doctors are stumped. They still feel it may be a side affect from the radiation, but it is unclear. Aly's cancer doctor talked with a neurologist and they want to do an EEG test just to see if that may help give some answers. It was just scheduled today, for tomorrow morning at Children's in St. Paul. With this test, Aly has to be sleep deprived. For some reason, with this test, they feel there is a better chance to catch one of these episodes if there is a lack of sleep. So, we have to keep Aly awake until midnight tonight and then let her sleep for about 4 hours and wake her up. I'm really looking forward to rush hour on 4 hours of sleep! Look out St. Paul, here I come!
I tried to help calm Aly's nerves. Oh, that is a bad play on words... She's got to remember all she's been through and the fact that she had surgery on her brain and the chemo and radiation (POISON) that have also been aimed at her brain, I'm sure has something to do with this. The nerves in her brain had to have been affected in one way or another. I just hope they find some answers. It is really frustrating to tell Aly there is nothing that can be done at this point. Please continue to keep Aly in your prayers.
On a side note...Aly's hair is growing back in! She looks like she's got old man's syndrome with a large round patch on the top of her head that is still bald. It is slowly filling in, but that is where the radiation dose entered her head, so that will be the last to grow. The hair that is growing is REALLY dark! Like almost black, dark. It is much darker than when it started to grow back after chemo and before radiation. It will be interesting to see if it stays that way or gets lighter as it grows. Aly said she wants her blonde back!
Thursday, February 2, 2012
#44
Hi Everyone!
Aly is doing good...still having some jaw locks, but not as frequent and she had one episode where her face tightened up and eyes closed on her, this week. She went swimming last night and also had swimming for gym class yesterday, so she enjoyed that as well!
The Blue Line Club is hosting a fundraiser for the Luke Letellier Family on February 6th!
During next Monday’s Varsity Hockey Game vs. St. Cloud Apollo we will be sponsoring a Chuck A Puck event for Luke.
People can purchase a puck for just $1.00. We will also accept freewill donations on site.
100% of the proceeds will be donated to the Letellier family!!
People can purchase a puck for just $1.00. We will also accept freewill donations on site.
100% of the proceeds will be donated to the Letellier family!!
In addition, there will be prizes for a few lucky Chuck-A-Puck participants!
The JV game starts at 5:00 PM and the Varsity Game starts at 7:00 PM @ the STMA Arena.
We will have lots and lots of pucks to purchase. We would love to sell 444 pucks for our #44 Luke Letellier!
Be sure to stop by and cheer on our Knights!
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