Friday, December 30, 2011
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!
Wednesday, November 02, 2011
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!
Monday, October 24, 2011
Friday, October 07, 2011
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.
Tuesday, August 23, 2011
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.
Wednesday, August 10, 2011
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! :)
Sunday, July 10, 2011
That said, we're long over due for an update. I'll start with the youngest in our family and bring you up to date on Jenelle.
Jenelle has had a rough couple of months seizure wise. We had weekly grand mals and increased to every other day grand mals as we continued to wean Vimpat. We had a follow up at UCLA with Dr. Shields on June 20. At that point, I was 6 days away from completely getting Jenelle off Vimpat, and her seizures were almost out of control. It was hard to tell if the increase in seizures was due to to the wean itself (sometime kids can have increased seizures when a wean goes too quickly) or from the lack of Vimpat. I had been taking the wean extra slowly often adding weeks to a dose to get Jenelle to stabilize. With this information, Dr. Shields felt the increase in seizures was from the lack of Vimpat, and decided we needed to "wean" her back onto an increased dose. It also didn't hurt that Jenelle had had a 4 minute grand mal as I was driving 70 mph in the car pool lane on our way to UCLA. I was almost to the point of deciding to cross a double yellow when the seizing stopped. She slept in her "post-ictal" state through her entire appointment with Dr. Shields, so he was very concerned that things had not improved.
Since increasing Vimpat, her seizures have stabilized. Knock on wood she has gone a week without a grand mal. Once we have Vimpat to the therapeutic dose (100 mg twice a day), we will start weaning Jenelle off Banzel. Right now, she is on 3 Anti-Seizure Meds, and we'd like to get her back to mono-therapy. Dr. Shields is going to recommend Jenelle to their neuro-surgeon for the VNS implant, and wants to see Jenelle again in two months.
Jenelle started her new school on June 27, and she has been handling the change in routine pretty well. The school bus now picks her up at our door, but after school care has been held up a bit. The YMCA has an after-school program for special needs kids, but it would require that Jenelle have a paid one on one aide to be in the program. The YMCA has done an evaluation of Jenelle, and will try to incorporate her IEP goals into their program as well. This is exciting and wonderful news because the extended school year program with our District is much shorter than the program she had with the county. Everything is in place except for the funding, which will be done through Regional Center. Jenelle has been in school two weeks now without after school care. Silly me, expecting all the agencies to work together on time. We are still waiting on Regional Center, so Jenelle will not have after-school care again this coming week.
Now, onto Jack. Jack has had a fantastic summer so far, and it's not even the middle of July! Baseball is his life and passion right now, and we are enjoying every minute! By the way, Jack now goes by the name "JD" - it is a nick name he has had in sports (because usually there is more than one Jack on a team), but when he changed schools this year, he decided to take on the name for good. It's been hard for me to use it, but slowly I use it more. This is how my parents must have felt when my sister went from Leigh to Norma.
Jack's AAA team, the Cardinals, won an amazing Championship game against a team that beat them twice during the season. They took first place, then went on to win the District 30 Tournament of Champions while defeating other leagues in our District. It was an amazing run, and we really enjoyed the families we got to know on the team. As the regular season ended, Jack was voted onto the 9/10 Pool Play All Star Team - aka the Tustin Eastern 9/10 year old Red team. The All Star run was not as exciting as last year, and his team did as expected winning 2 and losing to our rival Tustin Western. Tustin Eastern had the unique opportunity to field two 9/10 year old Pool Play Teams this year, and the second team, the White team made it to the Championship game - only to lose to Tustin Western in an extra inning heart breaker game 10-9.
Just prior to the last week of school, Jack had the biggest thrill of his life as he was selected by his Grandfather (District Administrator for our District) to throw out the first pitch at the Angels Game on Little League Day! Our nephew, and Jack's cousin Trevor was also selected by Grandpa to be the honorary Bat Boy. It was a perk Grandpa Denny had been waiting for the last 6 years, and it was such an amazing experience for the family. Both boys were announced on the big screen, and JD's pitch was a perfect strike from the mound! Three days later, JD received an award at school for being "Fantastically Physically Fit", and two days after that, JD's team won the Tournament of Champions. It was a pretty amazing week for all of us.
Jack and I recently took a road trip just the two of us through Santa Barbara, San Luis Obispo and Visalia. Jack "video logged" most of the trip and we really enjoyed some special bonding time, even though he missed his Daddy, and I missed Daddy and Jenelle. When we got home, Jenelle gave me a huge smile and hug, and jumped up and down for what seemed an eternity. It was a good trip for all of us as it always feels like Brett and JD are doing things together, which leaves me and Jenelle. It's nice to be home and having some time off to relax was good.
Speaking of which, here is my latest update. On July 5, I finished my last ever dose of ATRA, the chemo pill form of a massive dose of Vitamin A for 15 days. This was my last ATRA round ever! This part of my chemo happened every three months for a duration of 15 days. The side effects included horrible head aches, dehydration, itchy skin, and of course, fatigue. I make an effort not to drink alcohol when on Vitamin A, and to increase my water intake. The side effects this last round were not as bad as it has been in the past, so that is good.
I had a follow up appointment on June 16 at UCLA, and my doctor informed me that my maintenance chemotherapy would be finished the next time I see her in August. My blood work was OK, but showed that my red count was low. This could mean many things, and she said they would not know more until getting my chromosome results. Of course, this had me a little nervous as sometime your counts are low because your cancer has returned (thus taking up room for healthy cells). At the very least, it would explain my increased fatigue over the summer. I did not get a follow up call, so I assume all is well with the low red count.
Brett is great and work has been busy for him. Now that Little League is over, he has been focused mostly on the Travel Ball Team he manages for JD and other 10 year olds. We had a quick tournament just before the 4th of July, and we are preparing for another one next season. The team's just became a 501c Non Profit organization and we are gearing up our fundraising to help raise funds for a trip to Cooperstown for the Travel Ball World Series in Summer 2013. Like I said, it's always about baseball in our family, and we wouldn't have it any other way! The team is the Tustin Rampage, and you can check us out at http://www.tustinrampage.com/.
That is all for now. I have some wonderful photos of late to share with you all, but wanted to get the "update" out. Hopefully in the coming weeks, I'll have more time to enjoy my new lawn chairs, and in meeting our wonderful new neighbors. Thanks again for the thoughts and prayers - as always, I'll keep you posted!
Tuesday, June 07, 2011
This reminded me of my Dad, and how each day for my lunch at school, Dad would draw a cartoon on my lunch bag, or some special message. At first it was embarrassing, but then other kids at school were curious each day and wanted to see what message I had on my bag. Sometimes before Christmas Vacation, Dad would be so creative, he would write the music notes to "Hark the Herald Angels" and the words "Hark the Herald Angels Shout, ___ (insert number of days) till school is out!"
As kids get older, and as I am learning with Jack as he is now a tween, it is harder to find something to connect you. But doing little reminders like this, help keep kids grounded in family. Kids begin to realize that its OK to laugh at yourself, or your family, because laughter is healthy.
I found it very interesting that the Father in this story has a prosthetic leg. I think that those of us with special circumstances (i.e. be it a disabled child or disability of our own) often have to have a sense of humor when dealing with everyday life.
What a wonderful memory for this son, and what a wonderful relationship this family has with one another. Thank you to my Dad, for all the time and effort that went into decorating my sack lunches. I only wish I had saved them all.
Tuesday, May 17, 2011
That said, our lives have been pretty hectic of late. So much so that we had a small scare a few weeks ago that shocked us into being reminded how fragile Jenelle can be. While busy one afternoon, Jenelle snuck out of her play area, walked through our garage filled with boxes, across our front lawn, to the open front door of our next door neighbor's home, through their living room (avoiding many glass vases and figurines), through their open sliding glass door and into the deep end of their pool. And yes, Jenelle does not know how to swim.
Thankfully, God made sure there were some guardian angels watching Jenelle that day. Our neighbor's relative from Holland was lounging by the pool with his eyes closed. He had just asked the 14 year old if he wanted to swim, and the 14 year old declined because he had homework. As he laid in the sun, he heard the splash and thought to himself that the 14 year old had changed his mind. A few seconds later, he realized that he didn't hear anyone resurface after the splash. He opened his eyes, looked into the deep end, and realized a child he didn't know was sinking to the bottom. Jenelle had instinctively held out her arms, and he was able to grab her arm and pull her out of the pool without jumping in.
After coughing up water, Jenelle did not answer when he asked if she was OK. Because he didn't know her and didn't know that she couldn't talk, he called for the 14 year old, who ran down stairs, recognized Jenelle and scooped her up and took her to Brett. Brett was very calm as he took Jenelle into his arms. He simply looked at her shivering, cold body and said, "sweetie, you know you can't swim silly!" and took her inside to change her.
Not many people can truly say that they have saved a life, but the relative from Holland saved Jenelle that day. If he hadn't been by the pool, or if he had drifted to sleep, she would be dead. And my stomach lurches when I think of what could have happened. We are very lucky, and Jenelle will be taking swim lessons this summer!
Another change that will be happening this summer is that Jenelle will be going to a new school (the special needs program within our school district, not with the County) and to a new daycare. We toured the district's severe to moderate program at Benson Elementary in late May with the District representative, our advocate Janna from Epilepsy Support Net of Orange County, Jenelle's current teacher Joy and her current principal Renee. Two years ago when the District wanted to place Jenelle in this program, Brett and I did not approve. The program was just not right for Jenelle's abilities, and the District didn't even have a teacher! Wow, we were very impressed with how much the program had improved. This school is the perfect fit for Jenelle, and we are very anxious for her to start on June 27.
Another positive for the school is that they have a YMCA after school program on site that will accept Jenelle with a one on one aide. While we love our day care provider, who has taken care of Jenelle since she was 18 months old, this will be a good move for Jenelle as she will be with children her age. Her current daycare has kids ages 5 and under, and Jenelle just towers over the rest. The school bus will now pick up Jenelle from our new home, take her to school, where she will then be transported to the Y after school where we can pick her up. I'm always a bit hesitant about how Jenelle will handle changes, but I think in time this will be a great situation for her. Thankfully we will always be in touch with her current daycare provider through the Internet and Facebook! ;0)
Jenelle is scheduled to see Dr. Shields again at UCLA in the middle of June. I assume we will re-address the issue of the VNS. Speaking of which, her seizures have been about the same. When we started weaning Vimpat, I saw a drastic increase in seizures. Remembering what we had done in the past, I increased her dose a bit to give her more time. Since taking the wean slower, she is doing well seizure wise, but still have more seizures than we'd like.
The official baseball season has come to a close, and the playoffs and Championship games are upon us. Jack's team is playing for first place on Thursday, and Jenelle's Challenger team is playing another Challenger team in the area on Saturday at Curran Field. I can't believe how quickly this year has gone.
Also this Saturday the Epilepsy Support Network of Orange County is having it's annual Epilepsy Walk (formerly the Epilepsy Freedom Walk). Although Jenelle is playing baseball at the same time as the walk, we have started a virtual team (Jenelle's Avocados) in an effort to raise money. Please make a donation if you can by following this link: http://epilepsywalkoc.kintera.org/boocurran
That is all for now. I will update again after our visit to UCLA. Thank you for continued thoughts and prayers, and remember to hug your kids a little tighter.
Monday, March 14, 2011
A few days later, I had a follow up appointment with my Opthamololgist at Hoag. I was diagnosed with Glaucoma many years ago, and before my cancer the doctor checked my pressures every six months. Since the cancer, and the chemo, she sees me ever 4 months as chemo can sometimes affect the eyes in unwanted ways. What was supposed to be a quick check of my pressures, turned into a much longer visit when I told the doctor that I was seeing small "spinners" in the visual field of my left eye. Upon further examination, I confirmed that there is a small area in the visual field of my left eye that "spins" or doesn't actually focus. When I cover the left eye to check the right vision, the same area is black. Apparently, this was concerning to the doctor. Disturbance in the visual field of this kind can often indicate problems in the brain behind the optic nerve. The doctor believes this is simply some damage from my chemotherapy, but wants an MRI, and an exam with a "retina specialist" for further tests. Not sure there is anything to worry about, but I will keep you posted. Right now, I'm just considering it as a "better safe than sorry" thing that usually happens to me in my post cancer life.
The other trip to UCLA was for Jenelle. We traveled today to UCLA for her 6 month follow up with Dr. Shields. We told Dr. Shields that Jenelle's seizures were still the same, but had decreased in duration somewhat (i.e. instead of a 4 minute grand mal, they last for 2 minutes.) Dr. Shields agrees that Banzel could be helping, but wants to get her off the Vimpat before we fully asses its value. I started the Vimpat wean tonight, and it should take 8 weeks to finish.
I asked Dr. Shields if he felt Jenelle would be a good candidate for the Vagus Nerve Stimulator (VNS). He said it was something to consider, and he will present her case to the neurosurgeon at UCLA for his opinion. We'll hear from them later if they think Jenelle would be a good candidate. As for now, we will stick with the medications and their doses, except for the Vimpat wean.
And, we received a bit of sad news today. The wonderful class with the County of Orange where Jenelle has been a student for 2 years is going to be closed June 30. This is the 4th year that the County has had to cut classes. This means Jenelle will need to be transitioned into a new severe to moderate class for special needs students; and most likely at a new school. I spoke with the County Principal today, and indicated that I wanted to tour all of our options, including the County Program in Anaheim, the County Program in Irvine, and the Severe to Moderate Classes in Tustin. Two years ago, it was my belief that the Tustin program was not a good fit for Jenelle, however, their program has been in place now for 2 years, and of course, Jenelle has changed as well. I am keeping an open mind about all of the programs in our area, and hope the transition will be a smooth one.
That is all for now! Thanks for the continued prayers and positive thoughts. I'll keep you posted!
Tuesday, February 22, 2011
Silly me. And here, I thought that maybe, just maybe when your child's mic-key button has been out for an unknown length of time, and you had trouble inserting it yourself, so instead of puncturing your child's stomach you thought it might be best to take her to the ER, just in case she needed surgery.
And silly me. It wasn't my fault that Jenelle had a grand mal at school that lasted over 9 minutes, and they couldn't give her Diastat, so rather than risk a permanent seizure state or further brain damage, they called 911 and had her transported to the ER so she could get IV seizure medication.
And silly, silly me. When I was uncertain as to whether or not my child had swallowed a pony tail holder, and she didn't poop for 4 days and was crying inconsolably I decided she needed an x-ray and went to the ER; in case she needed surgery. Only to learn later the poor child was constipated.
Maybe if my child could talk, I wouldn't abuse the ER so much. Maybe I like the special treatment and attention I get when I taker her to the ER. Maybe I enjoy subjecting my immune compromised child as well as my post-cancer/chemotherapy immune compromised self to the endless patients lining the halls with fevers, coughs and vomit at the ER in hope of getting sicker.
Hmmmm. Wait just a minute. Let's hear that again. Oh yeah. I'm the one forcing my child to make needless trips to the ER for "non-urgent" things like seizures and a missing mic-key button. I'm the reason it takes at least 4 hours to get in and out of the ER, even when you arrive via ambulance. Certainly not the endless individuals lining the chairs and hallways with their cold germs and flu. Certainly, their medical needs are much more "urgent" than mine because we all know, only the ER has the cure for the common cold and the flu, but they just won't let those darn general practitioners in on it.
Or maybe... just maybe... Its because I actually have insurance... therefore the ER has a way in which to contact me to request I not come in so frequently for "non-urgent" matters; as opposed to all those other patients without insurance who are there because they really don't want to fork out money to a doctor when they can get health care at the ER for free.
Yeah, that's it. That's the ticket.
In all seriousness; there was an actual message on our answering machine last Friday from Jenelle's pediatrician, Dr. Patel - whom I love and adore with all my heart. She actually said on the machine that my insurance asked her to call, to make sure I knew not to use the ER for "non-urgent" issues that could best be handled by her, Jenelle's GI or Jenelle's Neurologist. I called her back and we both had a good laugh, but she said that Jenelle's medical group (St. Joseph's Heritage Medical Group) was really "cracking down" on people who frequent the ER. I told her, "You know me. You know I'm not going to the ER unless it wasn't absolutely necessary." She agreed, but said she was just doing her job. She had received a letter from Jenelle's medical group instructing her to call me to discuss the issue. I can totally respect that. I just hope St. Joseph/CHOC ER is reaching out to the real offenders; the patients that go to the ER because they don't have insurance or a real doctor.
Thank you for listening to my rant. Now, for your viewing pleasure, I want to share a video clip I took on Monday of Jack and Jenelle "jumping" together at the Little League field. Jenelle can jump a whole lot better than she does in this video, but it was just too cute not to share. Jack has turned into a wonderful, caring big brother and loves to give Jenelle hugs, hold her hand when we walk her places and take care of his special little sis. It just makes me happy to see the two actually starting to have a sibling relationship.
Tuesday, February 08, 2011
Since getting to the full dose on Banzel, we've started to see some decrease in seizures for Jenelle. And by that I mean... instead of big seizures every other day/week, we're seeing more time pass between episodes of seizure clusters. Improvement? Yes, you could say that. I've been biting my tongue, and knocking on wood, and just when I want to say things are better, Jenelle has another bad seizure day. Yesterday was one of them.
Thankfully, we now have a very good action plan in place for days when Jenelle has bad seizures. A few weeks ago, the family had been planning to attend a baseball tournament for Brett and Jack's travel ball team. It was rainy and cold, but Jenelle and I never miss an opportunity to watch her brother play baseball... unless of course she has a 4 minute grand mal. After her lengthy seizures, Jenelle usually falls asleep (in a "post-ictal" seizure state) for anywhere from a half an hour to two hours. So I stayed home with Jenelle while the boys played baseball (and won the tournament) in the rain.
Yesterday, Jenelle woke us with a grand mal lasting a little more than a minute (we think) at 6:00 AM. We never really can tell how long she has been seizing when she is sleeping, but I hear the familiar vocal noises and both Brett and I sat in bed silently for a minute, before I got up to check on her. It was one of those parenting moments when you lie in bed, double check that you heard what you heard, and wait to see if your spouse will get up instead. Of course, Jenelle was post-ictal for a while after, and I went back to bed turning off my alarm instead of hitting snooze. We woke frantically with 10 minutes to get Jack out the door for school. Nice way to start a Monday! On my way to work, I called Jenelle's teacher to give her a head's up. A few hours later, she called concerned as Jenelle had a drop seizure, and was again sleeping. After a few more seizures, I decided to get Jenelle from school, because my time was better spent watching her sleep at home, instead of ending up in the ER should the seizures get worse. Jenelle had a few more at home, but by dinner time was her old self again.
Speaking of dinner and food, Jenelle had a follow up last week with Dr. Idries, her GI doctor. Since stopping formula last May, Jenelle has lost 3 pounds, and went from being in the 75th percentile to the 25th percentile for weight. Dr. Idries wants to give her 3 more months without formula, but her her weight doesn't come back, we may be back on formula. I'm not too concerned as Jenelle is very healthy. In fact, at our last visit the doctor thought Jenelle was over weight, so I'm not really sure how 3 pounds made such a difference. So, instead of water and juice, Jenelle is getting more whole milk with her meals, and hopefully gaining some of that weight back!
As for the seizure improvement, I e-mailed Dr. Shields a few weeks ago to see if we could start weaning the Vimpat, but he would rather give it more time. We see him again in March. That is all for now. The kids are getting ready for baseball as opening day is two weeks away.
Thanks for the continued prayers. I'll keep you posted!
Monday, January 17, 2011
"I say to you today, my friends, so even though we face the difficulties of
today and tomorrow, I still have a dream. It is a dream deeply rooted in the
American dream. I have a dream that one day this nation will rise up and
live out the true meaning of its creed:
We hold these truths to be self-evident: that all men are created equal.
I have a dream that one day on the red hills of Georgia [people living with
physical and mental disabilities and people without disabilities] will be able
to sit down together at the table of brotherhood...I have a dream that [children
with special needs] will one day live in a nation where they will not be judged
by [their disability] but by the content of their character. I have a
I share that dream with you Dr. King. We've come so far, but we still have more to do. Will you help me make this dream a reality?
Sunday, January 02, 2011
And, Jenelle had a trip to the ER this week, but for once it was not seizure related. As Elmo on Sesame Street says, "Everybody poops!" to which I say "except Jenelle!" Poor Miss Jenelle has been dealing with a horrible bout of constipation since before Christmas. Last Tuesday, Nicki and I took the kids to Irvine Park with a picnic lunch from Burger King. As I was feeding Jenelle a cheeseburger, she began to scream and cry. Jenelle loves her food, so this was definitely not normal. I started to think back in my mind, and realized her last significant BM was on Christmas Eve. Ironically, the day before Jenelle had swallowed what I think may have been a pony tail holder. I then started to do the math, and worried that she had an obstruction or blocked intestine. I left the boys with Nicki at Irvine Park and Grandma met us at the gate and took us to the ER.
The ER was jammed packed, and it took us 2 1/2 hours just to get to triage. When taking her vitals, I joked with the nurse and suggested we just get an x-ray while we were still waiting in the lobby. She actually agreed that it would be a good idea to speed things along. Half an hour later, we were called back for an x-ray; an hour after that we finally saw a doctor. The good news is that they could not see an obstruction, and the bad that Jenelle was full of stool. Two adult sized enemas later and she passed some stool, but not what we were hoping for. The doctor sent us home with advice to give her Miralax daily for the next 6 months. We think her medication could be making her constipation worse.
Since coming home, Jenelle has had a hard time (no pun intended) with her bowel movements. The only way she has passed stool is from the help of a glycerin suppository or an enema. I called our pediatrician two days later for advice, and he said not to worry as long as we were getting something out. He warned not to use the laxatives and enemas too frequently because she could become at risk of becoming dependant on them. Every other day was acceptable.
Other than the BM issue and today's seizures, it has been a wonderful holiday. I've been meaning to post photos, but find that when I have a few spare moments, a nap is more attractive than playing on the laptop. I'm doing well and (knock on wood) have managed to avoid illness this holiday. Even with the 6 hours in the ER for Jenelle.
Jack celebrated his 10th birthday on Saturday. We had 7 boys spend the night on New Year's Eve and celebrated his birthday for once with friends on the actual day. Last night before going to bed, Jack announced that he was now a "tween". Oh boy, here we go!
I really think 2011 is going to be a fantastic year, and I'm not just saying that because 11 is my lucky number. I think we'll finally gain back the seizure control we lost for Jenelle and my health should continue to improve as well. My only New Year's Resolution is to finish chemotherapy this year; and if all goes well, that will happen in August!
Thank you for continued thoughts and prayers. I'll post some photos soon!