The best way to increase awareness for Epilepsy is by sharing our personal experiences with seizures. This blog has been my ongoing therapy now for over 9 years. I am reminded each and every day that by sharing this experience, I am helping others. Thank you to readers Renee and Ashlyn for saying "Hello" to Jenelle and I at CHOC yesterday. You made my day!
Two weeks ago, I walked in the Children's Hospital of Orange County "Walk in the Park" at Disneyland (CHOC Walk) with many beautiful collegiates from Tri Delta sorority at Chapman University. I had planned to take Jenelle with me, but alas, the seizure monster woke her in the middle of the night with a nasty long seizure, and I didn't have the heart to put her through a 5 AM wake up call.
During the walk, I met the mother of one of the girls from Chapman. She knew about Jenelle, and as we were walking and talking, she asked me if the CHOC walk was emotional for me. Honestly, it was very emotional the first time we walked, but I've long passed the stage of grief for Jenelle's condition. In fact, that crisis seems like forever ago and I barely remember the stinging anniversaries anymore. Instead, I celebrate the joy I see when Jenelle achieves new ground and reaches new milestones. Just as I celebrate the accomplishments of Jack, our "normal" child. Our life doesn't even feel like a "new normal" anymore because it is simply normal.
A family member mentioned on Jenelle's birthday recently that she was one year away from doubling her life expectancy. And that is an amazing accomplishment in itself. Yet still, we are fighting seizures, and looking for that next new medication, and hoping that we can keep her seizures under control so she can continue to thrive and learn new things.
You should expect this by now; each and every November I will remind you that it is National Epilepsy Awareness month. I will ask you to wear purple, the color for epilepsy, and for you to educate yourself about seizure types, seizure first aid, and ways that you can help out our epilepsy community. But the most important request I will make is that you talk about epilepsy! Help us spread the word so we can extinguish stigma and better educate our communities on how to help those affected by epilepsy.
Greg Grunberg is an actor with a child who suffers from epilepsy. He has graciously taken his family story to the next level, and created a website charity called Talk About It to help educate the public about Epilepsy. It also helps that he has pulled in his celebrity friends to deliver the message on the Talk About It website. Check it out - it has some fantastic videos. Thank you Greg for all you've done to advocate for our kids!
Below is a video of an interview he gave a few years ago in Washington, before the Epilepsy Foundation National Epilepsy Walk. Besides giving you a glimpse of how epilepsy has affected his son, he really points out the important things like getting to the right doctors, finding the right treatment and being open about the condition. Enjoy!
Wednesday, November 02, 2011
Wednesday, October 26, 2011
Monday, October 24, 2011
Happy Birthday Jenelle!
Our new 9 year old! My has she grown! Here is Jenelle after her Challenger Cheer Competition on Sunday.
Friday, October 07, 2011
Entering New Territory
For most of the last 9 years, our lives have been lived in "crisis" mode. And any therapist will agree, after the crisis is over, that is when the real fear and potential depression can set in. Our family is now entering new territory; one filled with some stability for Jenelle, and no more chemo for me.
Let's begin with Jenelle. We are almost completely off Banzel, and with that we are seeing some stability again with her seizures. The definition of that stability being a grand mal once every week or more, instead of almost every 3 days. She has done really well with the transition to her new school. In the beginning, she was very lethargic because of the new routine. Typical Jenelle always found ways to test her new teachers. For all that she does not say in words, I can read her like a book, and I know when she lets her care givers do the work for her.
We are in the process of working on her IEP which started a few weeks ago. Her IEP this year is a tri-annual IEP, meaning she goes through thorough evaluations again. This is perfect timing in that her new program will get to fully evaluate her abilities, and adjust her goals accordingly. Her class is wonderful and really strives on being an inclusive, typical class with the rest of the school as opposed to a separate program altogether. This means she wears uniforms to school, and participates in all school functions, like fundraising, PTO programs and Assemblies. She's growing up, and adjusting well to the difference from her old school.
I couldn't be more pleased with the YMCA Inclusion program that has taken over for her after school care. Jenelle has a one on one aide, funded by Regional Center, and seems to fit in well with the rest of the group of kids her age. We've been very fortunate in that her aide is the same person each day - not something I expected. Jennifer, her Y Aide has a college degree, and interest in learning more about special needs kids and the psychology of their behavior. She is always asking the right questions, and has even picked up on things I miss with Jenelle. The little girls in after school care just love Jenelle, and love to help her any way they can. When I pick her up at the end of the day, we leave sometimes with a chorus of "Goodbye Jenelle" from her new friends. We miss Valerie, but it was a perfect transition for Jenelle, and she seems to enjoy being with kids her age.
Jenelle is cheering for the Pop Warner Challenger Cheer team. The team is absolutely adorable, and Jenelle really seems to get exctied to put on her uniform and jump with her new friends. I promise, photos to come! We are still waiting to hear about approval for the VNS, and we should be getting a call for her new wheelchair/stroller any day. Our next trip to UCLA is in November.
I had a follow up at UCLA at the end of August and because I had been on my maintenance chemo medication for two full years, with a recent ATRA round, I was officially "DONE" with chemo. My labs that day indicated that my white count was a little low, but no reason to postpone. As for returning to full time work, that is going to take a bit more time. My doctor suggested giving myself at least until the end of the year to determine if I'm back to normal and would not think of releasing me yet. I'm thankful for the rest, and have needed it at times. Some of the side effects from Methotrexate and Mercaptapurine lingered for a bit, but seem to now have subsided. I do notice that it's is easier to wake up in the mornings without that drugged feeling, especially on Fridays which was always my day after Methotrexate. I'm still tired, but that could be just being a Mom.
With the start of school came a bout with the stomach flu and a sinus infection for both me and Brett. Of course, once I supposedly have a non-suppressed immune system, I get sick! The doctor put me on an antibiotic, and said my immune system will still take time to rebound. I had a bit of a scare the other day when I got the letter granting an authorization for my next oncology follow up. The letter said it approved a bone marrow biopsy. A little un-nerved at seeing those words again, I quickly called UCLA. The blood test for my cancer usually takes two weeks or more for results, and this was perfect timing for those results to indicate anything. Thankfully to my relief, UCLA will routinely request a bone marrow biopsy from now on for approval should they feel the need to do one if I present with cancer symptoms - not because of a recent test. They prefer having it approved if needed, rather than deciding I need one and making me wait for authorization. My next follow up with UCLA is in November, same day as Jenelle's visit to Dr. Shields.
In December I will be three years cancer free, and in two more years, I'll be cured. We begin new territory in this family where there is nothing much to worry about. Of course, it will always be in the back of my mind - the "what if" it returns; but that is to be expected.
There is a unique bond with cancer survivors; we all have been given the opportunity to respect and be grateful for each day we are given. I really felt connected to Steve Jobs passing this week, especially in his words at that Stanford commencement. Live each day as if it were your last, and don't live someone else's life. It really is just as simple as that, and I am so thankful to have to opportunity to live those words with true meaning.
Let's begin with Jenelle. We are almost completely off Banzel, and with that we are seeing some stability again with her seizures. The definition of that stability being a grand mal once every week or more, instead of almost every 3 days. She has done really well with the transition to her new school. In the beginning, she was very lethargic because of the new routine. Typical Jenelle always found ways to test her new teachers. For all that she does not say in words, I can read her like a book, and I know when she lets her care givers do the work for her.
We are in the process of working on her IEP which started a few weeks ago. Her IEP this year is a tri-annual IEP, meaning she goes through thorough evaluations again. This is perfect timing in that her new program will get to fully evaluate her abilities, and adjust her goals accordingly. Her class is wonderful and really strives on being an inclusive, typical class with the rest of the school as opposed to a separate program altogether. This means she wears uniforms to school, and participates in all school functions, like fundraising, PTO programs and Assemblies. She's growing up, and adjusting well to the difference from her old school.
I couldn't be more pleased with the YMCA Inclusion program that has taken over for her after school care. Jenelle has a one on one aide, funded by Regional Center, and seems to fit in well with the rest of the group of kids her age. We've been very fortunate in that her aide is the same person each day - not something I expected. Jennifer, her Y Aide has a college degree, and interest in learning more about special needs kids and the psychology of their behavior. She is always asking the right questions, and has even picked up on things I miss with Jenelle. The little girls in after school care just love Jenelle, and love to help her any way they can. When I pick her up at the end of the day, we leave sometimes with a chorus of "Goodbye Jenelle" from her new friends. We miss Valerie, but it was a perfect transition for Jenelle, and she seems to enjoy being with kids her age.
Jenelle is cheering for the Pop Warner Challenger Cheer team. The team is absolutely adorable, and Jenelle really seems to get exctied to put on her uniform and jump with her new friends. I promise, photos to come! We are still waiting to hear about approval for the VNS, and we should be getting a call for her new wheelchair/stroller any day. Our next trip to UCLA is in November.
I had a follow up at UCLA at the end of August and because I had been on my maintenance chemo medication for two full years, with a recent ATRA round, I was officially "DONE" with chemo. My labs that day indicated that my white count was a little low, but no reason to postpone. As for returning to full time work, that is going to take a bit more time. My doctor suggested giving myself at least until the end of the year to determine if I'm back to normal and would not think of releasing me yet. I'm thankful for the rest, and have needed it at times. Some of the side effects from Methotrexate and Mercaptapurine lingered for a bit, but seem to now have subsided. I do notice that it's is easier to wake up in the mornings without that drugged feeling, especially on Fridays which was always my day after Methotrexate. I'm still tired, but that could be just being a Mom.
With the start of school came a bout with the stomach flu and a sinus infection for both me and Brett. Of course, once I supposedly have a non-suppressed immune system, I get sick! The doctor put me on an antibiotic, and said my immune system will still take time to rebound. I had a bit of a scare the other day when I got the letter granting an authorization for my next oncology follow up. The letter said it approved a bone marrow biopsy. A little un-nerved at seeing those words again, I quickly called UCLA. The blood test for my cancer usually takes two weeks or more for results, and this was perfect timing for those results to indicate anything. Thankfully to my relief, UCLA will routinely request a bone marrow biopsy from now on for approval should they feel the need to do one if I present with cancer symptoms - not because of a recent test. They prefer having it approved if needed, rather than deciding I need one and making me wait for authorization. My next follow up with UCLA is in November, same day as Jenelle's visit to Dr. Shields.
In December I will be three years cancer free, and in two more years, I'll be cured. We begin new territory in this family where there is nothing much to worry about. Of course, it will always be in the back of my mind - the "what if" it returns; but that is to be expected.
There is a unique bond with cancer survivors; we all have been given the opportunity to respect and be grateful for each day we are given. I really felt connected to Steve Jobs passing this week, especially in his words at that Stanford commencement. Live each day as if it were your last, and don't live someone else's life. It really is just as simple as that, and I am so thankful to have to opportunity to live those words with true meaning.
Wednesday, August 31, 2011
Tuesday, August 23, 2011
Some photos of summer
Summer began with Jack's Little League Team, the AAA Cardinals, winning District 30 Tournament of champions! We shared a special moment with Grandpa as he got to hand out the banner to Brett, JD and their team.
A few days later, Jack had the best moment of his life: He threw out the first pitch at the Angels game. We gave him the brick below as a special gift to remember the day. The brick will be laid in front of Angels Stadium as a part of their Brick Project for charity. It was an extra special day as cousin Trevor was honorary bat boy as well.
Shortly after 4th of July, Jack and I took a solo road trip to see Nana and Poppa George, as well as Aunt Onie, Aunt Norma and cousins Matt and Eric. JD enjoyed swimming with his older cousins, and going to Poppa George's concert in the park in Kingsburg.
A few days later, Jack went to his first ever sleep away camp. Here he is at Forest Home with his friends Garret and Grant. They had a blast.
Jenelle is enjoying her new summer camp as well, including their field trip to Knotts Berry Farm.
In late July, District 30 was host to a Little League Travel Ball team from Victoria, Australia. Our travel team from Tustin Eastern got to play the Kangaroos in a friendship game.
Here is a recent photo of Jenelle, taken by Aunt Debbie. She is such a young lady now, as opposed to a baby girl. Her beauty amazes me.
And Brett and I finally got to see U2 in concert at Anaheim Stadium. Brett got me the tickets two years ago, but the concert had been postponed due to Bono's (the lead singer) back injury. The concert was amazing.
One last Baseball photo... JD pitching in a travel ball tournament.
Summer has flown by, and I have more photos to share when I get a chance.
A few days later, Jack had the best moment of his life: He threw out the first pitch at the Angels game. We gave him the brick below as a special gift to remember the day. The brick will be laid in front of Angels Stadium as a part of their Brick Project for charity. It was an extra special day as cousin Trevor was honorary bat boy as well.
Shortly after 4th of July, Jack and I took a solo road trip to see Nana and Poppa George, as well as Aunt Onie, Aunt Norma and cousins Matt and Eric. JD enjoyed swimming with his older cousins, and going to Poppa George's concert in the park in Kingsburg.
A few days later, Jack went to his first ever sleep away camp. Here he is at Forest Home with his friends Garret and Grant. They had a blast.
Jenelle is enjoying her new summer camp as well, including their field trip to Knotts Berry Farm.
In late July, District 30 was host to a Little League Travel Ball team from Victoria, Australia. Our travel team from Tustin Eastern got to play the Kangaroos in a friendship game.
Here is a recent photo of Jenelle, taken by Aunt Debbie. She is such a young lady now, as opposed to a baby girl. Her beauty amazes me.
And Brett and I finally got to see U2 in concert at Anaheim Stadium. Brett got me the tickets two years ago, but the concert had been postponed due to Bono's (the lead singer) back injury. The concert was amazing.
One last Baseball photo... JD pitching in a travel ball tournament.
Summer has flown by, and I have more photos to share when I get a chance.
Wednesday, August 10, 2011
Summer is Flying By!
Well geez, it's been exactly one month since my last update. My apologies! We've had a pretty fantastic summer so far, and we've been very busy as well. Jack's travel ball team, the Tustin Rampage, played in a couple of tournaments in the month of July, including the USSSA World Series in West Covina - they came in 6th in the first round (out of 23 teams), but did not advance in the second. The Rampage also played in a Friendship game for District 30 Little League, and had the unique opportunity to play a travel ball team from Victoria Australia! It was a blast, and I had fun keeping score with two Aussies doing the announcing! We were laughing more off the microphone than we did when we were on it! Meanwhile, while the Rampage played travel ball tournaments, 4 of our players were on the Tustin Eastern Little League 9/10 Year Old All Star Team that recently won the Division 5 Championship (the Southern California State Title!) Needless to say, there is a lot of talent at his age. I'll update more on JD's summer a little later with some great photos.
While driving back and forth to games, Jenelle started her new summer school program in which she had class from 8:00 to 11:50 each day. I was a little concerned at first because she came home with a "homework" packet the second day. Yes, actual homework with math, spelling, cut and paste and reading! I wasn't sure how to approach with her new teacher because I learned that it was the teacher's first teaching job. The idea of sending home a uniform homework packet with tasks that Jenelle clearly had no ability to accomplish was offensive at first. As Jack said, "Mom, that is college work to Jenelle!" I didn't turn in her homework, and heard nothing from her teacher in return.
Jenelle did really well at school after the first week or so. The YMCA program finally went into effect during her fourth week of summer school. Jenelle has two wonderful aides through the YMCA, and she has kept them on their toes. The second day, as I was getting in my car in Newport Beach I got a call from her aide, "Mrs. Curran? The little plastic thing in her tummy? Well, it fell out! What do we do?" Oops, Jenelle lost her mic-key button, and this was something we didn't cover! In fact, the YMCA didn't even have a spare. When I asked the aide if she knew how to replace it, she said no, so I told her to put a band aide over the stoma, and that I'd take care of it when I picked her up (and that I was on the way!) "A band aid? Is she in pain? Does it hurt her to have it out?" she asked. "No", I replied, "but if you don't put a band aid over the hole, stomach contents will start to leak out!" Ewe! I got to Jenelle's school, and 10 minutes later replaced the mic-key button at home. No problem!
Later that first week, Jenelle had a different aide who unfortunately got to experience her grand mal seizure. Like I said, Jenelle really kept them on their toes, and the YMCA has handled everything beautifully. Once school ended at the end of July, Jenelle started full day with the YMCA summer camp, and has accompanied them on two field trips! One to the Discovery Science Center in Santa Ana, and one to Knott's Berry Farm. They plan to travel to the YMCA pool next week, but I think Jenelle will sit on the deck for that trip! Her aide told me today that once they started full days, Jenelle seemed agitated and tired easily, but now is used to the routine and fits in well. She also has an entourage of 8, 9 and 10 year old girls who look forward to playing with her each day. It's wonderful to see her finally have friends her age.
And finally, in addition to Pop Warner Football season starting on August 1 for Jack, Jenelle started cheer leading for the Tustin Cobras as well, on their new Challenger Cheer Team! The team consists of 6 girls of varying ages and abilities. They really love doing cheers and Jenelle loves to do it as well. In fact, this evening I was trying to remember the moves without Jenelle (I stand behind Jenelle and move her arms for her) and as I started the cheer, Jenelle smiled and walked in front of me as if she knew it was time to practice! I was never a cheerleader, but it seems to come natural to Jenelle. She loves to jump and smiles when we rattle the spirit stick. The practices have been more of a work out for me, but that is not necessarily a bad thing as I could use some exercise.
Seizure wise, Jenelle is still having days with prolonged seizures. The Vimpat is finally up to the therapeutic dose, and we'll start the Banzel wean next week. Unfortunately, our next appointment with Dr. Shields is in November. Unless we hear about the VNS sooner. And three more weeks until school starts for both Jack and Jenelle. We'll have a big 5th grader, and a 3rd grader. Come September, we'll be back into our fall routine and looking forward to the holidays. Like I said, summer has gone by fast, but it has been filled with fun and we've enjoyed every minute. Thanks for the thoughts and prayers - pictures to come SOON - I promise! :)
While driving back and forth to games, Jenelle started her new summer school program in which she had class from 8:00 to 11:50 each day. I was a little concerned at first because she came home with a "homework" packet the second day. Yes, actual homework with math, spelling, cut and paste and reading! I wasn't sure how to approach with her new teacher because I learned that it was the teacher's first teaching job. The idea of sending home a uniform homework packet with tasks that Jenelle clearly had no ability to accomplish was offensive at first. As Jack said, "Mom, that is college work to Jenelle!" I didn't turn in her homework, and heard nothing from her teacher in return.
Jenelle did really well at school after the first week or so. The YMCA program finally went into effect during her fourth week of summer school. Jenelle has two wonderful aides through the YMCA, and she has kept them on their toes. The second day, as I was getting in my car in Newport Beach I got a call from her aide, "Mrs. Curran? The little plastic thing in her tummy? Well, it fell out! What do we do?" Oops, Jenelle lost her mic-key button, and this was something we didn't cover! In fact, the YMCA didn't even have a spare. When I asked the aide if she knew how to replace it, she said no, so I told her to put a band aide over the stoma, and that I'd take care of it when I picked her up (and that I was on the way!) "A band aid? Is she in pain? Does it hurt her to have it out?" she asked. "No", I replied, "but if you don't put a band aid over the hole, stomach contents will start to leak out!" Ewe! I got to Jenelle's school, and 10 minutes later replaced the mic-key button at home. No problem!
Later that first week, Jenelle had a different aide who unfortunately got to experience her grand mal seizure. Like I said, Jenelle really kept them on their toes, and the YMCA has handled everything beautifully. Once school ended at the end of July, Jenelle started full day with the YMCA summer camp, and has accompanied them on two field trips! One to the Discovery Science Center in Santa Ana, and one to Knott's Berry Farm. They plan to travel to the YMCA pool next week, but I think Jenelle will sit on the deck for that trip! Her aide told me today that once they started full days, Jenelle seemed agitated and tired easily, but now is used to the routine and fits in well. She also has an entourage of 8, 9 and 10 year old girls who look forward to playing with her each day. It's wonderful to see her finally have friends her age.
And finally, in addition to Pop Warner Football season starting on August 1 for Jack, Jenelle started cheer leading for the Tustin Cobras as well, on their new Challenger Cheer Team! The team consists of 6 girls of varying ages and abilities. They really love doing cheers and Jenelle loves to do it as well. In fact, this evening I was trying to remember the moves without Jenelle (I stand behind Jenelle and move her arms for her) and as I started the cheer, Jenelle smiled and walked in front of me as if she knew it was time to practice! I was never a cheerleader, but it seems to come natural to Jenelle. She loves to jump and smiles when we rattle the spirit stick. The practices have been more of a work out for me, but that is not necessarily a bad thing as I could use some exercise.
Seizure wise, Jenelle is still having days with prolonged seizures. The Vimpat is finally up to the therapeutic dose, and we'll start the Banzel wean next week. Unfortunately, our next appointment with Dr. Shields is in November. Unless we hear about the VNS sooner. And three more weeks until school starts for both Jack and Jenelle. We'll have a big 5th grader, and a 3rd grader. Come September, we'll be back into our fall routine and looking forward to the holidays. Like I said, summer has gone by fast, but it has been filled with fun and we've enjoyed every minute. Thanks for the thoughts and prayers - pictures to come SOON - I promise! :)
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