Monday, August 02, 2010
Video tribute from a fan!
Today I received a link to a video created by one of our blog followers. A stranger who has been watching Jenelle's progress for many, many years. The video is beautiful, and I can't watch without crying.
Thank you all for the continued support. Sharing Jenelle with everyone is one of the best parts of being Jenelle's Mom. Thank you to reader Vicky for creating this video!
Enjoy!
Monday, July 19, 2010
Girls follow up day at UCLA - Video EEG results
Jenelle and I had follow up appointments today at UCLA. Amazingly, I managed to schedule both appointments for this afternoon - a feat in itself! I had a blood draw first, then we met with Dr. Shields, followed by my appointment with my oncologist Dr. Territo. Good news was the result all around!
First, we met with Dr. Shields to discuss the results from Jenelle's video EEG in June. If you recall, we were concerned that Jenelle was having spasm seizures again, which could have put us back on some nasty meds. Dr. Shields said it was an urgent question that needed to be answered, and the Video EEG ruled out any instance of spasms. Some of the physical things we were seeing in Jenelle during seizures and when waking were definitely not spasms. That was a relief to hear.
The other good news in the EEG results were that we captured a few of Jenelle's "staring" absence seizures (also known as complex partial seizures.) Of course, Jenelle always has to be different from the norm. While her seizures look like classic absence seizures (staring, smacking lips, drooling and picking of clothes or skin with the hands during the seizure) Jenelle's absence seizure look more like a generalized seizure on the EEG. I know that sounds confusing, and it is. To make it easy for everyone, the EEG confirmed seizure activity, but thankfully it was not bad as we feared.
So where do we go from here? With a child like Jenelle, who is obviously always going to have seizures, we need to determine the best course of action to take without hindering her progress. Yes, Jenelle has had too many seizures in the last few months; two trips to the ER by ambulance are two too many. But, we always have to focus on seizure control as opposed to trying to be seizure free. Jenelle is progressing, developing and doing well. And, seizures are a part of her daily life. Do we want to risk her progress by trying to obtain something that isn't realistic? The answer of course is no. We will only be at that point should we find that Jenelle starts losing skills because of her seizures.
As for her medications, Jenelle is already almost to the max of the drug Felbatol. This means, there is no room to increase the dose. Dr. Shields has been studying a new drug that has recently been approved for use in patients with Lennox Gastaut Syndrome. It is called Vimpant, and apparently it works well on complex partial seizures. He wants to give it a try to see if it can make a difference, and help reduce the absence seizures (also called complex partial) we are seeing in Jenelle. Vimpant is only approved by the FDA for children with a diagnosis of LGS. We may have some trouble getting it, so we are not starting right away (thought I have a prescription to get the process started with our pharmacy.)
In the mean time, we mentioned that Jenelle's behavior of late has been a little worse. For those of you who know her in person, Jenelle is very strong and very active. Lately, she has started to kick and pull her hair and bite. Obviously, these are not behaviors we want to leave untreated, so we are going to increase her Risperdol until we can get the behavior under control. Apparently, we have a lot of room for an increase on that medication. Once we reach a good dose to control her behavior better, we will then start our wean onto Vimpant. We see Dr. Shields again in early November, and that should be good timing wise to see what effect, if any, Vimpant has on Jenelle's seizures.
Our focus in the coming months will be to make these changes in medication with as little disruption to Jenelle's daily living as possible. Please keep her in your positive thoughts and prayers that things so smoothly.
As for my follow up appointment today, my numbers (from the blood work) are good and I am still cancer free. I haven't updated in a while because I got sick just before 4th of July. On June 29, I left work with a sore throat. My blood work from the week before showed a drop in my neutrophil and white blood cell count. I spoke to the nurse and she told that I could be getting sick. The next morning I really felt horrible and decided to stay home. I called the nurse again and she asked me to have my blood work done again so she could make sure my numbers hadn't fallen. The numbers were the same and my neutrophils were at 800 (remember anything below 500 and I get a lovely stay at the hospital). They had me stop my daily chemo regime. The next day, I started running a fever of 100.7 (anything over 100 for me is considered a fever, especially when my counts are below 1,000.) The doctor put me on a Z-pack and told me not to return to work. After a few days on the antibiotic, I started to feel better, but still very fatigued.
Work has been extremely busy of late, and that hasn't really helped me rest much. Just when I think I can start to take on more, my body find a way to remind me that my health is still fragile. Brett has been wonderful and is giving me some much needed rest at home. Baseball has kept us busy with the All Star Game and the festivities surrounding it last week. I have some fun photos to share soon. Jack's travel ball team that Brett coaches has had two tournaments out of town. While it is fun, I am saying no to certain things like Angels games and after game parties with Jack's team so as not to over do. I remind myself that just a year ago, I did not have the strength to do nearly as much as I do today. I try to remember to do one thing at a time, and try not to overdo.
So good news all around for the Curran girls. I do have many fun photos to share, but right now my body is telling me to get some sleep as tomorrow is a busy day at work. Thank you for the continued thoughts and prayers. I'll keep you posted!
First, we met with Dr. Shields to discuss the results from Jenelle's video EEG in June. If you recall, we were concerned that Jenelle was having spasm seizures again, which could have put us back on some nasty meds. Dr. Shields said it was an urgent question that needed to be answered, and the Video EEG ruled out any instance of spasms. Some of the physical things we were seeing in Jenelle during seizures and when waking were definitely not spasms. That was a relief to hear.
The other good news in the EEG results were that we captured a few of Jenelle's "staring" absence seizures (also known as complex partial seizures.) Of course, Jenelle always has to be different from the norm. While her seizures look like classic absence seizures (staring, smacking lips, drooling and picking of clothes or skin with the hands during the seizure) Jenelle's absence seizure look more like a generalized seizure on the EEG. I know that sounds confusing, and it is. To make it easy for everyone, the EEG confirmed seizure activity, but thankfully it was not bad as we feared.
So where do we go from here? With a child like Jenelle, who is obviously always going to have seizures, we need to determine the best course of action to take without hindering her progress. Yes, Jenelle has had too many seizures in the last few months; two trips to the ER by ambulance are two too many. But, we always have to focus on seizure control as opposed to trying to be seizure free. Jenelle is progressing, developing and doing well. And, seizures are a part of her daily life. Do we want to risk her progress by trying to obtain something that isn't realistic? The answer of course is no. We will only be at that point should we find that Jenelle starts losing skills because of her seizures.
As for her medications, Jenelle is already almost to the max of the drug Felbatol. This means, there is no room to increase the dose. Dr. Shields has been studying a new drug that has recently been approved for use in patients with Lennox Gastaut Syndrome. It is called Vimpant, and apparently it works well on complex partial seizures. He wants to give it a try to see if it can make a difference, and help reduce the absence seizures (also called complex partial) we are seeing in Jenelle. Vimpant is only approved by the FDA for children with a diagnosis of LGS. We may have some trouble getting it, so we are not starting right away (thought I have a prescription to get the process started with our pharmacy.)
In the mean time, we mentioned that Jenelle's behavior of late has been a little worse. For those of you who know her in person, Jenelle is very strong and very active. Lately, she has started to kick and pull her hair and bite. Obviously, these are not behaviors we want to leave untreated, so we are going to increase her Risperdol until we can get the behavior under control. Apparently, we have a lot of room for an increase on that medication. Once we reach a good dose to control her behavior better, we will then start our wean onto Vimpant. We see Dr. Shields again in early November, and that should be good timing wise to see what effect, if any, Vimpant has on Jenelle's seizures.
Our focus in the coming months will be to make these changes in medication with as little disruption to Jenelle's daily living as possible. Please keep her in your positive thoughts and prayers that things so smoothly.
As for my follow up appointment today, my numbers (from the blood work) are good and I am still cancer free. I haven't updated in a while because I got sick just before 4th of July. On June 29, I left work with a sore throat. My blood work from the week before showed a drop in my neutrophil and white blood cell count. I spoke to the nurse and she told that I could be getting sick. The next morning I really felt horrible and decided to stay home. I called the nurse again and she asked me to have my blood work done again so she could make sure my numbers hadn't fallen. The numbers were the same and my neutrophils were at 800 (remember anything below 500 and I get a lovely stay at the hospital). They had me stop my daily chemo regime. The next day, I started running a fever of 100.7 (anything over 100 for me is considered a fever, especially when my counts are below 1,000.) The doctor put me on a Z-pack and told me not to return to work. After a few days on the antibiotic, I started to feel better, but still very fatigued.
Work has been extremely busy of late, and that hasn't really helped me rest much. Just when I think I can start to take on more, my body find a way to remind me that my health is still fragile. Brett has been wonderful and is giving me some much needed rest at home. Baseball has kept us busy with the All Star Game and the festivities surrounding it last week. I have some fun photos to share soon. Jack's travel ball team that Brett coaches has had two tournaments out of town. While it is fun, I am saying no to certain things like Angels games and after game parties with Jack's team so as not to over do. I remind myself that just a year ago, I did not have the strength to do nearly as much as I do today. I try to remember to do one thing at a time, and try not to overdo.
So good news all around for the Curran girls. I do have many fun photos to share, but right now my body is telling me to get some sleep as tomorrow is a busy day at work. Thank you for the continued thoughts and prayers. I'll keep you posted!
Sunday, June 27, 2010
Jenelle eating a cup cake
One of Jenelle's new goals in school is to start using her hands to feed herself. At school, they are using Cheese-it Crackers and having some success. On Father's Day, I made some lemon cup cakes and decided to let Jenelle try to eat one on her own while I frosted them. Jack tried to get involved as well. Enjoy!
Friday, June 18, 2010
Summer Begins...
Jack finished the last day of 3rd grade on Wednesday, so Summer has official begun at the Curran house. To celebrate, I thought I'd share some photos. First, here are some photos from the girl's slumber party at UCLA:
First we have Jenelle with her "Princess Hat" that helped to keep her from pulling out the EEG connectors that were glued to her head. That hat lasted all of an hour before she pulled it off (at least the probes stayed put!)
Here is a photo of our room - can you see Pauley Pavillion out the window in the background? In the foreground, you can see the EEG monitor. The waves are chaotic because Jenelle was wiggly, not because she was seizing.
Here is Jenelle the next morning - just starting to get irritated with the whole thing.
And you may think this is an odd photo, but I just had to share. This is the gurney in the ER. Now, if there are any "Grey's Anatomy" fans out there, you may notice that in the show, patients often have pink or navy or peach colored sheets. For those of us who are "frequent fliers" in hospitals, we know this is a bunch of hog wash. Hospitals use white sheets so they can bleach the heck out of them! This photo below is of the gurney in the ER at UCLA. I immediately noticed that is was a soft cotton jersey like material, and definitely not white. I made a comment to our nurse, and he told me it was something "new" they were trying. They had hoped that the softness of the sheets, and the color would be soothing to patients. I must say, it looked comfy, and definitely "soothing!"
Jack's last assignment for 3rd grade was an oral report on a sports figure that is no longer playing their sport. No, Jack has not converted to being a Red Sox fan, but he did do an oral report on Ted Williams, the Greatest Hitter ever. Here is Jack working on his poster of Ted Williams.
The night before Jack's last day of school, he and Daddy got into a "tickle fight" which lead into a dog pile. Jenelle enjoyed their laughter so much, she decided to get in on the fun. So Jack and Daddy in turn dog piled on Jenelle. As you can see, she loved every minute of it!
Finally, tomorrow is the first game for the Little League 9 and 10 year old All Star Tournament. Jack (who goes by the nick name "JD" in baseball) was voted onto the All Star team by the coaches. We are very proud of him. I had to decorate the car to show off our pride! 
Go Tustin Eastern Little League!
That is all for now. Happy Father's Day - enjoy the beautiful weekend ahead!Sunday, June 13, 2010
Home without answers
Jenelle and I left UCLA on Wednesday afternoon with few answers from her EEG. Dr. Shields wants to review all 24 hours and see us in 4 weeks. In the meantime, no change in medications. From the preliminary report, Dr. Shields feels that Jenelle is not having spasms, so that is good news. Why she has had an increase in seizures, we still don't know.
I started ATRA (Vitamin A, my third chemo med) on Thursday and I've been really tired. Watching Jenelle in the hospital for two days didn't help. Thankfully, Brett has let me sleep in all weekend. It was very challenging trying to keep Jenelle in a hospital bed for two days. She fell out three times; once I caught her, and the other two times she fell to the floor. She wasn't hurt, but a little startled. I'm glad to be home.
That is all for now. I will keep you posted. Thank you for sending those seizure vibes. Whether or not it worked, we have yet to know.
I started ATRA (Vitamin A, my third chemo med) on Thursday and I've been really tired. Watching Jenelle in the hospital for two days didn't help. Thankfully, Brett has let me sleep in all weekend. It was very challenging trying to keep Jenelle in a hospital bed for two days. She fell out three times; once I caught her, and the other two times she fell to the floor. She wasn't hurt, but a little startled. I'm glad to be home.
That is all for now. I will keep you posted. Thank you for sending those seizure vibes. Whether or not it worked, we have yet to know.
Tuesday, June 08, 2010
The other side
In 7 years, I've really learned a lot about reading an EEG. The waves on the screen look like seismic quakes. I can tell when she seizes, and when the waves are normal. Some of the large waves look like seizures, but they are normal - usually because she is moving. But right now, she is in a deep sleep, and the waves are everywhere on the screen. It makes me wonder, has she been having seizures in her sleep without us knowing? Another question for Dr. Shields in the morning.
This is a strange experience for me, being on the other side of the hospital bed. The care giver and not the patient. I know this hospital so well. I lived here for a month of my life. I'm not used to this side of the bed. I went down a bit ago after Jenelle fell into a deep sleep to get something at the dinning commons. When I came back in, I had to show ID. I didn't realize you had to do that, I guess because I was always a patient. My food came from room service, and I didn't parade in the lobby after 9:00 p.m.
A year ago, I was dying at the hospital in Santa Monica. I've amused myself looking at the calendar of late, because I barely remember anything this time last year. Looking back at the blog entries helps. Jenelle's room is set up exactly the same as the one where I spent one of the worst month of my life. Not remembering that time is unavoidable. Yet, I remind myself that I am fine now. I survived, so I could continue to be a caregiver to Jenelle. So I could sit on the other side of the bed with her.
Brett had to stay home with Jack today. Jack was voted onto the 9 & 10 Year old All Star Team, and Brett is helping to coach. Jack has school and they have practice. Brett would love Jenelle's room - it overlooks Pauley Pavilion, and the football practice field. My room was on the other side. Brett always wanted me to ask to be moved.
Thank you for the continued thoughts, seizure vibes and prayers. I'm exhausted, but I'll keep you posted.
This is a strange experience for me, being on the other side of the hospital bed. The care giver and not the patient. I know this hospital so well. I lived here for a month of my life. I'm not used to this side of the bed. I went down a bit ago after Jenelle fell into a deep sleep to get something at the dinning commons. When I came back in, I had to show ID. I didn't realize you had to do that, I guess because I was always a patient. My food came from room service, and I didn't parade in the lobby after 9:00 p.m.
A year ago, I was dying at the hospital in Santa Monica. I've amused myself looking at the calendar of late, because I barely remember anything this time last year. Looking back at the blog entries helps. Jenelle's room is set up exactly the same as the one where I spent one of the worst month of my life. Not remembering that time is unavoidable. Yet, I remind myself that I am fine now. I survived, so I could continue to be a caregiver to Jenelle. So I could sit on the other side of the bed with her.
Brett had to stay home with Jack today. Jack was voted onto the 9 & 10 Year old All Star Team, and Brett is helping to coach. Jack has school and they have practice. Brett would love Jenelle's room - it overlooks Pauley Pavilion, and the football practice field. My room was on the other side. Brett always wanted me to ask to be moved.
Thank you for the continued thoughts, seizure vibes and prayers. I'm exhausted, but I'll keep you posted.
Finally in a room
Start sending those seizure vibes!
We finally got a room around 5:00. Dr. Shields came to see us in the ER, and had the EEG technician put the electrodes on Jenelle while in the ER so we didn't waste any time once we got a room. Unfortunately, just as the tech finished putting on the EEG electrodes, Jenelle had a huge tonic seizure requiring oxygen (I think from the stress of being forced to stay still - I was lying on top of her while they put in the electrodes.) It was unfortunate, because she wasn't hooked up to the EEG yet.
We are now in our room waiting for dinner to arrive (Mac N Cheese for Jenelle - I'll fend for myself later tonight when she's asleep.) Jenelle has had a seizure since we got up to her room (and while hooked onto the EEG), so that's a good thing. Hopefully we'll get some answers.
I'll keep you posted.
We finally got a room around 5:00. Dr. Shields came to see us in the ER, and had the EEG technician put the electrodes on Jenelle while in the ER so we didn't waste any time once we got a room. Unfortunately, just as the tech finished putting on the EEG electrodes, Jenelle had a huge tonic seizure requiring oxygen (I think from the stress of being forced to stay still - I was lying on top of her while they put in the electrodes.) It was unfortunate, because she wasn't hooked up to the EEG yet.
We are now in our room waiting for dinner to arrive (Mac N Cheese for Jenelle - I'll fend for myself later tonight when she's asleep.) Jenelle has had a seizure since we got up to her room (and while hooked onto the EEG), so that's a good thing. Hopefully we'll get some answers.
I'll keep you posted.
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