Has it really been almost 2 months since my last update? Wow, time flies. Quite a lot has happened for Jenelle since our last update, all of it being very good.
Jenelle finally finished the wean off of Banzel just days before our follow up visit to Dr. Shields. Amazingly, Banzel must have been the culprit that increased Jenelle's seizures because as we weaned, her seizures were better. Jenelle went from having a tonic clonic (grand mal) every 3 days or sooner, to one seizure every two weeks. It was an amazing improvement, and I'm grateful to have her off that medication.
Jenelle and I did a marathon visit to UCLA on November 21st, where she had a follow up with Dr. Shields, and I had a follow up with Dr. Territo. We saw Dr. Shields first without any wait - in fact, we got into our exam room 10 minute early! He was very pleased to see her more alert (remember last time she had a seizure on the way to UCLA and pretty much slept the entire appointment.) He wants to keep her medications the same for the next few months since the Banzel wean took so long. The new drug he wanted us to try is to finally be approved by the FDA in the first part of the new year, so we'll discuss it again at her follow up in February or March. He did increase her existing meds to adjust to her weight increase - Jenelle is now a solid 56 pounds!
From our appointment in pediatric neurology, Jenelle and I went to oncology to check in for my blood draw and appointment with Dr. Territo. While they took me right away for my blood draw, we were not so lucky waiting for Dr. Territo for two and a half hours. Jenelle was a trooper, and Dr. Territo appreciated our patience. All of the nurses love Jenelle and she and I strolled the halls to visit everyone.
As for my update, I'm feeling good since finishing chemo in August. I definitely feel less tired, and am ready to take on more. Unfortunately, I've been battling the sore throat, sinus infection that has made its rounds and it feels like one step forward, two steps back. My blood work showed that my immune system was rebounding, but of course with the sinus illness, my white count was elevated. Everything else was pretty close to normal. Dr. Territo wants me to stay on limited work until at least the end of the year. It's difficult to tell if I'm getting sick because of my weakened immune system from the chemo, or if I'm just getting sick. She agreed it would be good to start pushing myself more and possibly adding hours to my work day, but to listen to my body and be extra cautious. I've started to try to go back to work on Friday mornings, and of course we've been pretty busy having two bench trials in December. I see improvement, and appreciate the advice to take it easy.
Back to Jenelle, after our follow up with Dr. Shields, Jenelle went almost one month without a grand mal! That is part of the reason I hadn't updated - I knew the second I bragged about the improvement, she would have a seizure. All went well until one evening in early December when Jenelle had 3 grand mals over 4 minutes within less than 3 hours. After the third seizure, I simply gave her Diastat even though she wasn't seizing. I didn't want to fight a cluster of grand mals, and the Diastat seemed to do the trick. She perked up just after the dose to let me know she was OK, and then slept the rest of the evening. Since completing the Banzel wean, the seizures have been notably less, but we've had days where she has had quite a few one on top of the other. In all honesty, I think she's having them every two weeks or so, the last being at 6AM on Christmas Morning! Poor Jenelle slept all morning through the excitement of toys and opening presents. Santa was very good to her, and she loves all her new toys.
And as if that wasn't enough keeping on top of my cold and Jenelle's seizures - Jack added himself to the injured list. The Saturday after Thanksgiving, Jack was playing football in the front yard with some friends. During one tackle play, a friend's knee went into Jack's mouth and broke his two front adult teeth at the root, as well as a hair line fracture to the maxilla palliate. With all the times I've watched Jenelle be poked and prodded in the ER, it was not so easy watching two dental students shove Jack's teeth back into his swollen gums, and apply a brace to keep them steady. It was a very severe trauma, but the oral surgeon thinks we might be lucky to simply walk away with root canal for both teeth. Right now, Jack is on a liquid, soft food diet and under strict orders to not chew or move those front teeth. He goes back to the oral surgeon on the 3rd to see if the teeth have died. If so, then all four front teeth will be removed and he will have a bridge. Amazing to think root canal is the best possible outcome in this scenario!
Finally, I want to share that on Halloween my Dad called to tell me he had been diagnosed with Multiple Myleoma. Mom and Dad are still in Visalia, and his oncologist along with 5 other doctors are there as well. Dad wasn't sure the information was accurate, and was concerned because there were no treatment options. Dad just turned 83, and from my own cancer experience, I can understand why there are no options at his age. Immediately, I got his recent labs and called Dr. Territo for a second opinion. Her nurse Karolina reviewed his labs and set up an appointment with Dr. Territo as quickly as possible. Dad has been having a lot of pain with neuropothy in his feet (which is a symptom of myeloma), and has been unable to make long drives. He has also lost 30 pounds, and is quite fatigued. My sister Norma drove down from San Francisco to drive Mom and Dad down to UCLA where I was able to meet them for Dad's appointment with Dr. Territo. As expected, Dr. Territo was wonderful and we got some encouraging news; Dr. Territo thinks that Dad has something called MGUS, which is "pre-myeloma", and not myeloma just yet. She agreed there was not much to be concerned with right now, but his other symptoms were a concern. She wants her own tests and lab work, and will be following Dad very closely. Once again, I feel so blessed to have UCLA so close to home.
We had a wonderful Christmas and we've been spending lots of time together playing games, reading and watching football. Jack is going to have a New Year's eve party for his 11th birthday, and we are slowly ending the year on a rested note. I will post photos separately so as to give you time to catch up on this long update. Perhaps my New Year's resolution should be a goal to update more - the good or the bad, just to let you know we are OK. As always, we are thankful for your prayers and support. Blessings to you all in the coming new year!
Friday, December 30, 2011
Wednesday, November 02, 2011
November is National Epilepsy Awareness Month!
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!
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, 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.
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