The "Mother" of all updates

For Mothers' Day, I bought myself three new lawn chairs for our new home. Two chairs for me and Brett, and a smaller one for Jenelle. They are an Adirondack knock off, and were on sale at Target. I love them because they fit beautifully in our yard, and having a place to sit and relax in the front is something I wish we had had at our old home. I always told Brett the only thing missing in that home was a porch, with chairs to sit in to sip some wine, read a book or watch the kids play. So when we moved, I bought the damn chairs, and our good friend put them together for me on our first day! I've used them quite a bit, and have met many new neighbors in the process (the chairs are on every lawn on our street), but lately we've been so busy, the chairs have been neglected.

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!

Memories of School Days

I wanted to briefly share a news article and blog I found on Yahoo this morning, about a Dad who surprised his son's school bus each morning by waving good bye in a different costume each day. The article can be found here, and here is "Peg Leg Dave's" Blog.

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.

Changes & Close Calls

I've been remiss in updating a while, but I have a darn good reason ... we moved! I've been telling everyone that I'm too old for moving, and that moving is for young college age kids. Then I realize I sound like my Mother! ;) For the sake of our privacy, and because Jenelle's website is internationally famous, I'll simply say that we are in our new home, we love it and the kids are adjusting very well.


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.

Two trips to UCLA and Two Updates

Two weeks ago, I made the trip up to UCLA for my follow up with Dr. Territo. All is well with my numbers, and she wanted me to start another course of ATRA (Vitamin A Chemo.) The last 14 days have been exhausting as I've been taking 3 different chemo meds. Not to mention theo painful dry skin and cracked lips that go with the high dose of Vitamin A. Thankfully, tomorrow is the last day!

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!

You know you've been to the ER too many times when ...

... you get a message on your answering machine from your child's doctor, stating that your insurance has requested the doctor contact you to "remind" you to try to "seek help from your general practitioner, GI Specialist, and/or Neurologist during weekdays and work hours as opposed to going to the ER for non-emergencies." OH REALLY!?! I had no idea that is how it is supposed to work!

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.

Enjoy!

Less seizures, but still fighting the seizure monster!

When I haven't updated in a while, it can mean many things; Jenelle is sick, I'm sick, We're just really busy, and/or I'm just don't want to jinx anything. This time, it's the later of those choices!

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!

Remembering Dr. King and taking his dream to new heights

Today is Dr. Martin Luther King, Jr. day in the United States. It is exciting to know that Jack cannot fathom the idea of racism and prejudice. However, sadly, members of our community continue to fight stigma and prejudice. I believe there is a "group" of individuals in the world that are just beginning their fight for equal rights in our society. These individuals are not separated by color, sex, age or economic status. I'd like to see Dr. King's "Dream" fulfilled in this way...

"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
dream today."

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?