Monday, December 13, 2010

New Plan for Jenelle's Increased Seizures

In the last few weeks, Jenelle's seizures have gone from having a "big one" every two weeks, to having a "big one" weekly, to now having lengthy seizures every other day. She continues to have long tonic seizures that go over two minutes and often end transitioning into a grand mal. School has seen this seizure, as well as her daycare provider. Both agree, these tonic seizures are horrific to watch as every muscle in Jenelle's body contract and stiffen during the seizure. Poor thing has also been very lethargic often taking 3 or more naps a day this past weekend. I can't help but wonder if she is napping because of the new medication, or if she is napping because her little body is tired from so many seizures.

Over the weekend, I had a revelation about Jenelle that prompted me to use my secret "back line" to Dr. Shields today. Using the general line to get in touch with him can often take a few days for a return call, if you get a return call at all. I sent an e-mail to his nurses this afternoon and spoke to Dr. Shields this evening on my drive home from work. He agreed her seizures were going in the wrong direction and that we needed to be more aggressive with getting her onto Banzel. Instead of increasing it every two weeks, he wants to increase weekly to see how it goes. We'll start that increase tonight.

As for my revelation over the weekend, Dr. Shields was very intrigued. At a holiday dinner on Saturday, I was talking with a new friend who is a physical therapist and into holistic nutrition. We talked a bit about Jenelle and he asked me lots of questions about Jenelle's vitamin intake. My response was, "Well, she is not taking any supplements right now, however, we usually don't have to worry about that because she is eating so well by mouth. She used to get all of her needed vitamins from her formula." Then it hit me. We took Jenelle off formula in May, coincidentally around the same time Jenelle's seizures started to get worse. Could it possibly be a simple vitamin deficiency has been causing all this havoc with her seizures?

Like I said, Dr. Shields was intrigued with this idea and agreed it was something to consider. He gave me instructions this evening to start giving Jenelle 100mg Vitamin B6 a day; 50 mg in the morning, 50 at night. He said that Vitamin B6 seems to have the most connection in causing seizures, and if we add that and see a significant difference, we may be onto something.

So while the increase of seizures has been disappointing of late, we now have a new plan. Please keep us in your special thoughts and prayers that her seizures do not get worse. The last thing I want this holiday is a hospital stay. I will continue to keep you all posted. Thanks in advance for the thoughts and prayers!

Wednesday, December 01, 2010

First long trip away from home with one hiccup!

When we saw Dr. Shields on the 15th, I told him we were planning an trip to Las Vegas for a baseball tournament for Jack's travel ball team (that Brett coaches) and that we were taking Jenelle. His advice? "Take lots of Diastat, and patience."

We left for Las Vegas after Thanksgiving dinner for 5 days and 4 nights, and the coldest weather imaginable. It was Jenelle's first "multiple night" trip away from her norm, other than visiting Nana and Poppa in Visalia. The drive out was great and we made it to Las Vegas in 3 and 1/2 hours. Jenelle slept the whole way, but upon our 11:30 p.m. arrival, she was awake and not very interested in sleep. The first night was tough, and in all Jenelle had about 5 to 6 hours of sleep total.

The team's first game was at 1:00 p.m. on Friday, and it was about 46 degrees. Jenelle had been a little whiny, but seemed to be adjusting to the cold all bundled up. During the first game, she was very happy and giggly, then she had a 4 minute absence seizure, where she was twitching, and non-responsive. Immediately as she came out of the seizure, she began crying and was very agitated. I had a feeling it wasn't the last one we'd see.

Once I calmed her down and got her to stop crying, I put her in her stroller. Aunti Nicki was sitting with me when Jenelle began to have a tonic seizure (where all of her muscles constrict). Her legs went stiff and her arms were out straight. Usually a tonic seizure like this for Jenelle lasts less than a minute, but as I watched the clock, this seizure went on for over two minutes. As her face became cyanotic and blue, I handed my cell phone to Nicki and pulled out the Diastat. The tonic seizure then turned into a grand mal and Jenelle started convulsing. I told Nicki to call 911, and pulled Jenelle from her chair to take her to an area where I could put her on the ground. I rolled her to her side and was about to administer Diastat when she stopped.

Our baseball friends unfortunately had seen this before, and ran to help me with blankets. When the paramedics arrived, Jenelle was not seizing, but when we told them she had had two seizures within a half an hour, they told me they had to take her to the ER. I was thankful just to get the reassurance.

We were transported by ambulance to St. Rose Hospital in Henderson. If you ever have to go to the ER in Vegas, I would highly recommend this one. As Jenelle's gurney was taken out of the ambulance, we were met by a nurse and a doctor, both asking me lots of questions. Within minutes, they had called UCLA to get a plan, and took blood and urine to rule out infection. I explained to the doctor all of Jenelle's history, and that her seizures had been out of control of late. I told him she was "due" for a big seizure, and that we had just started Banzel (ironically that Monday!) The doctor had never heard of Banzel or Vimpat, but he was familiar with Dr. Shields, though they had never met.

Once the blood work and urine came back normal, the doctor was about to let us leave, confident that I was comfortable using Diastat if needed. As he started to discharge us, Jenelle decided to have another seizure, which changed the doctor's plan a bit. They administered IV Diazapam (Valium) and let Jenelle sleep it off for an hour. Once she woke up and became alert, they let us go home... to our hotel.

The remainder of the weekend was uneventful seizure wise. Jack's team played 6 games and ended up in the top 4 out of 15 teams in the tournament, losing in the semi-final. After the ordeal with the bad seizures and trip to the ER, Jenelle couldn't have been a better Angel. She loved snuggling in bed in the early morning, and loved the free breakfast buffet at our hotel. Jack of course was excited to be with friends, playing baseball in another state!

We got home on Monday evening to avoid traffic out of Vegas. Ironically, a letter from Dr. Shields office scheduling our next appointment for March was waiting in our mailbox. I have a call into him to see if he wants to see her sooner. UCLA told our Henderson doctor that they did not think the Banzel was working yet, and that it sometimes took almost 3 months before you started to notice it working. For now, the plan is to keep things the same (medication wise) and wait to hear from Dr. Shields.

I cannot believe the holidays are here, and with the weekend after Thanksgiving spent in Las Vegas watching baseball, I feel a little behind on things like decorating and Christmas cards. Speaking of Christmas, we were watching Rudolph the Red Nosed Reindeer tonight, and I couldn't help but think of Jenelle as Rudolph. A little different than the rest, but so much to give the world.

Thank you for the continued prayers. I'll keep you posted!

Monday, November 15, 2010

The Verdict on Vimpat

Jenelle had a follow up with Dr. Shields today at UCLA. The last time we saw Dr. Shields in July, he put her on a new medication called Vimpat. We had hoped it would help decrease her absence clusters. Today, I told Dr. Shields about her recent 9 minute grand mal, and the 4 minute tonic seizure she had a week ago (I didn't mention it in an update previously because it stopped without intervention.) We decided that the Vimpat is not working, and that we should move onto a new drug called Banzel.

The drug Banzel is specifically FDA approved for children with Lennox Gastaut Syndrome. Instead of waiting to wean off Vimpat, we are going to add Banzel to the drugs she is already taking (Felbatol and Vimpat.) Remember, one thing at a time, so we know what works and what doesn't. We'll see him again in 3 months, or sooner if we have a bad experience with Banzel.

That is all for now. I will keep you posted.

Monday, November 01, 2010

Novemeber is National Epilepsy Awareness Month!

November 1 begins National Epilepsy Awareness Month. The color for Epilepsy Awareness is purple. Each year, I try to post information to help advocate and promote epilepsy awareness and to help educate everyone on what to do during a seizure emergency.

Recently, Jenelle had a 9 minute tonic clonic (grand mal) seizure at school. She was convulsing, foaming at the mouth and non-responsive. A grand mal seizure is not a typical seizure for Jenelle; she has had maybe 7 grand mals in her lifetime. Like an earthquake, there is no way to predict when it can happen, so the best advice is to be prepared. We have a seizure plan in place with Jenelle's school that describes certain procedures to be taken when Jenelle has cluster seizures (small seizures that come on one after another that total 15 minutes or more in a 20 minute time frame) or a prolonged tonic clonic seizure lasting more than 5 minutes.

The written plan in place involves administering Diastat to stop the seizure. Diastat is prepared dose of Valium designed to be given rectally. Jenelle has had a prescription for Diastat since she was 2 years old. Our entire family has been given instructions on how to administer Diastat. Diastat is designed for administration by a non-medical professional, and it has been approved by the FDA for such a purpose. Diastat has kept us out of the emergency room on many occasions.

During her 9 minute seizure, Jenelle did not get Diastat. Her grand mal went 4 minutes longer than it needed to. This because in California, the Board of Registered Nurses ("BNR") issued a directive in September 2009 advising school nurses statewide not to train teachers and other laypeople to administer Diastat. An excellent article from the Orange County Register in January of this year discusses the intricate complications the directive from the BRN has caused for families of children who suffer from seizures.

When the Directive came down last year, the Orange County Department of Education hired a registered nurse to be on site, or within a short distance of campus should Jenelle have a seizure emergency. We were OK with this. As it happened, Jenelle's nurse was not on site the day of her 9 minute seizures, and out for a personal medical issue. The timing just worked that way that day, and I don't hold any anger against the nurse or the school. The problem is bigger than that, and in my opinion is a direct result of the BRN's directive in September 2009. Lives are at stake, and the BRN's stance on this issue is simply a time bomb ticking.

School nurses are in fear of losing their license if a special needs teacher, or other lay person (including a paramedic) administers Diastat without their presence. These are the same individuals that used to be allowed to administer Diastat prior to the BRN's Directive. What ever happened to the law that protects Good Samaritans in an emergency? What does this mean for parents who routinely administer Diastat to children? I know that I could not stand by and watch Jenelle seize; hoping to God it isn't the seizure that takes her from us.

Senate Bill 1051, written by Senator Robert Huff of Orange County, has been introduced to the California State Legislature, and is currently in process. You can find the most recently amended version of the proposed statute here. This bill would allow lay persons to administer Diastat after proper training and instruction. If this bill fails, it would potentially risk the lives of many who suffer from epilepsy from gaining access to necessary emergency treatment.

While our state legislature takes its time in passing this urgent legislation, and the BRN continues to stand on it's directive (that is more about a union trying to saving jobs, than it is about the liability of administering Diastat by a lay person), persons with epilepsy remain vulnerable.

Any seizure that lasts longer than 5 minutes is an emergency. A seizure that lasts longer than 20 minutes can cause permanent brain damage. Seizures left untreated can lead to status epilepticus (permanent seizure state) and in rare instances, death.

What exactly is a seizure? Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs.

According to the Epilepsy Foundation, when the following conditions exist, immediate medical attention is necessary:

Brain infections
Heat exhaustion
High fever
Head injury

An un-complicated generalized tonic clonic (grand mal) seizure in someone who has epilepsy is not a medical emergency, even though it looks like one. It stops naturally after a few minutes without ill effects. The average person is able to continue about his business after a rest period, and may need only limited assistance, or no assistance at all, in getting home. In other circumstances, an ambulance should be called.

When to Call for an Ambulance

No Need to Call an Ambulance if medical I.D. jewelry or card says "epilepsy," and
the seizure ends in under five minutes, and consciousness returns without further incident, and there are no signs of injury, physical distress, or pregnancy.

An Ambulance Should Be Called if:

The seizure has happened in water;
There's no medical I.D., and no way of knowing whether the seizure is caused by epilepsy;
The person is pregnant, injured, or diabetic;
The seizure continues for or a second seizure starts shortly after the first has ended; and
Consciousness does not start to return after the shaking has stopped.

If the ambulance arrives after consciousness has returned, the person should be asked whether the seizure was associated with epilepsy and whether emergency room care is wanted.

So what can you do about Senate Bill 1051 and the Diastat issue? Write your representatives. Urge them to pass this necessary law. Write to the Board of Registered Nurses. Tell them how you feel they are endangering the lives of innocent children who suffer from epilepsy. Here are some links and addresses to help you:

California State Senate

California State Assembly

California Board of Registered Nursing

Board of Registered Nursing
P.O. Box 94421
Sacramento, CA 94244-2100

Please share this information with your friends and family, and remember that epilepsy awareness month is a time to speak up for those who cannot. Every moment lost to seizures, is a moment lost in development. For more information on epilepsy, please check out these sites:

Epilepsy Foundation

Talk About It

Epilepsy Support Network of Orange County

Sunday, October 31, 2010

Saturday, October 30, 2010

Follow Up at UCLA for Kelly

On Thursday, I took Jenelle with me for my follow up at UCLA with Dr. Territo. Everything is good with me; my counts are strong and I'm still cancer free. Dr. Territo wants me to finish the course of ATRA (Vitamin A chemo) that I started in September, but had to suspend when I was having the headaches. I have a planned dental cleaning next Friday, so she wants me to start chemo the following Monday and take the ATRA for the next 10 days.

Prior to my appointment at UCLA, Jenelle and I stopped by my office to drop off donuts for our (new) secretary's birthday. My department has a new secretary, and her first day at the firm was the day Jenelle had a 9 minute seizure. Just as we were leaving to take her to lunch on her first day, I got the call and had to rush out. Since she had already heard so much about Jenelle, it was only fitting to have them meet, so she could see how special Jenelle is.

It was a wonderful visit for Jenelle. I realized the last time she made a visit at the firm was two years ago. At that time, I tried to walk her around the office halls, but she was easily tired. Last Thursday, Jenelle was walking everywhere, and very cute when she peeked her head over cubicle bays to say hello. We had a wonderful day together in our trip to UCLA, and it was helpful to have her for the car pool lane as well.

That is all for now. With the holidays approaching, my next follow up will be in 6 weeks. That is all for now - I'll keep you posted!

Friday, October 22, 2010

Our New 8 Year Old!

Jenelle and her big brother Jack!

Is this really for me?

I'd rather eat the table instead!

Yummy Pizzookie!

Happy Birthday Jenelle!

Happy 8th Birthday Jenelle!

Eight years ago today, we were blessed with the birth of our beautiful Jenelle. While her life has been challenging, we are constantly reminded that every achievement, no matter how small, deserves celebration. Thank you sweet Jenelle for making us better parents, and for showing us the important things in life.

My how you've grown! We love you!

Tuesday, October 12, 2010

Big seizure for Jenelle on 10/10/10

Sunday night, Jenelle was acting very strange. She had a horrible bout of insomnia. She was anxious, frantic and very distracted. She didn't fall asleep until well after midnight, after I held her tightly to get her to relax. If she had been a cat, I could have sworn we were going to have an earthquake.

Well, it wasn't an earthquake, but a bad day none the less for our Jenelle. About a half an hour after speaking to Jenelle's teacher to notify her about Jenelle's bout of insomnia, her teacher called back to tell me that Jenelle was having a grand mal, that it had been over 5 minutes and that she had already called 911.

I was at work, so I notified my boss, and left immediately. In the car, her teacher called back to tell me that they were on the way to the hospital and to meet them there. She said the grand mal went 9 minutes. I asked if they had given Jenelle Diastat, her emergency seizure medication, and her teacher said no. I got to the ER just as the ambulance pulled in. When I got back to the exam room, Jenelle was lethargic and curled up in a ball, and seemed tired, as to be expected.

The County program that runs Jenelle's school has a registered nurse on staff that is there to help administer Diastat when needed. As you may have heard in the news, the Board of Registered Nurses in California have succeeded in obtaining a court ruling to back their recommendation that only a registered nurse, or medical doctor can administer Diastat. The BRN also feels that the RNs on campus are not qualified to instruct lay professionals, like school nurses (that are not RNs), health room aides and teachers, on how to administer Diastat (which is a dose of valium given rectally. The BRN recommendation also extends to EMTs and paramedics, prohibiting them from administering Diastat when needed. Sadly, the issue is a time bomb ticking. Individuals who have given Diastat in the past to stop seizures from going too long and inflicting brain damage are now prohibited from giving it. The RN who is normally scheduled to be at Jenelle's school yesterday was out sick, so Jenelle did not get her Diastat.

The County Nurse who was at another location during Jenelle's seizure arrived at the ER to pick up Jenelle's teacher, who rode with Jenelle in the ambulance. Both are wonderful care givers to Jenelle, and we completely understand why their hands were tied in this situation. I will, however, sending a strongly worded letter to the Board of Registered Nurses.

At the ER, they ran blood work and urine tests to make sure Jenelle wasn't ill. She started to have more seizures in the ER, so they started an IV and gave her a loading dose of Dilantin. During the Dilantin push, Jenelle started vomiting. It was a strange reaction as she has never vomited with Dilantin before. With the Dilantin, Jenelle fell asleep and the ER sent us home after her test results were normal. We got home around 4:30 and I gave Jenelle a shower to rinse her off. She went straight to bed and slept until 8:30.

Around 10:00 p.m., Jenelle started vomiting again. Knowing that she hadn't had her medicine or much to eat all day, I sat up with her until after midnight trying to get fluids into her g-tube. Jenelle kept dry heaving, but eventually fell asleep, so we avoided a return trip to the ER. Today, Jenelle has been holding down fluids, meds and food. We were very fortunate that Jenelle's seizure stopped on its own after 9 minutes. She started acting more like herself this evening, and even said "mum mum" and gave me a hug.

We aren't sure if Jenelle had a little stomach bug, or if the vomiting was from the Dilantin. Dr. Shield's office recommended increasing the Vimpat to see if that helped. We are scheduled to see him again in November, but he may try to get us in sooner. Until yesterday, Jenelle's seizures had been under control, and we really didn't have any indication that this would happen. We are grateful that she is acting like herself and hopefully done with seizures for a while.

Thanks for the continued thoughts and prayers. I'll keep you posted.

Monday, September 27, 2010

Crappy day for Mom ends with a spectacular milestone for Jenelle!

I've been sick today with what my oncologist thinks is a nasty flu virus going around. Headache, vomiting and stomach problems kept me from work today. I still have a headaches, but I'm hungry, so that is good.

While getting Jenelle ready for bed this evening, I found an old switch toy that she hadn't played with in a long time. The toy (that is operated by a big red button switch so Jenelle can easily activate it) is a light table with see thru color blocks that are used with the light. Wondering if the battery still worked, I plugged it in to find it still working.

I started to show Jenelle the various colors on the light table and tried to get her to activate the switch. She wasn't very interested. As a last effort to keep her interested in the toy, I asked her to "Show me the green one. Grab the green one." She sat still. Thought for a minute, then used her right hand to reach for and grab the green block. It was so exciting! Her grasp wasn't strong enough to give me the block, but she definitely made an effort and choose the right color (out of four on the screen!)

I called for Jack to come see what Jenelle could do. He tried to help her, but I think having an audience gave her a little stage fright. She did make an attempt when Jack asked for the yellow one, but started to be interested in other toys.

So exciting to see Jenelle doing new things. I just know that she understands what we say, just how to make that communication connection. That is all we need to figure out!

Thanks for continued thoughts and prayers. I'll keep you posted!

Monday, September 20, 2010

Back to School means Runny Noses!

Since starting Vimpat last week, Jenelle has been doing OK. We started seeing some increase in seizures on Thursday and started to wonder if it was the change in medication. However, on Friday morning, Jenelle woke with a clear runny nose, so that could be the reason for the increase in seizures as well.

On Saturday, Jenelle was very cranky and her runny nose was pretty bad. Fearing she might have an ear infection, I took her to urgent care where we had the quickest visit in history! The doctor checked her ears and they were fine. Because she has not had a fever with this runny nose, we're going to chalk the runny nose and increase in seizures up to a viral cold.

Unfortunately, she has now passed it onto Jack and me. I was supposed to re-start ATRA today (my vitamin A chemotherapy) but decided to wait until the I'm feeling a bit better. Ah, the joys of back to school.

Speaking of school, Jenelle's IEP last Thursday went exceptionally well. Our school district finally signed off on her IEP and agreed that the best placement for Jenelle this year is to remain in her current program with the County. Jenelle has met 15 of 25 goals, and her physical therapy is going to be "decreased" because there is not much more they can offer her at this time. I know that sounds strange, but when Jenelle arrived at age 3, she couldn't sit up, she couldn't stand or walk. We often wondered if it would even be a good idea to try to teach her these things, but as she improved and grew, she got brave and eventually overcame the odds. Her physical therapist will continue to help Jenelle with stairs, but for the most part, she has mastered sitting, standing and walking. She's our miracle girl!

That is all for now. I'll keep you posted.

Saturday, September 11, 2010


Since my last update below, I've been through quite an ordeal. The headache pain I experienced on Tuesday and Wednesday was pretty painful. I've never had migraines, and the closest thing to head pain is usually related to sinus issues. With the pain I've endured in the last few days, I've literally wanted to bash my head in to make it stop. Finally, we think we have some answers, and today has been cautiously pain free.

As it turned out, the original headache I suffered from over last weekend until Wednesday was from the Biaxin. A nasty little side effect, and I'll make a note to myself to never take it again. But as my original headache began to subside, I was sidelined with a different headache pain. Intense pressure in my head that was worse when I stood up or was moving. This my doctors have determined was a "spinal headache" as a result of the spinal tap I had on Tuesday. Joy!

As mentioned, I started ATRA (my Vitamin A chemo) on Monday because I am scheduled to take it every three months. A side effect of ATRA is that you can get dehydrated easily. You have to double your water intake with ATRA and even then my skin is flaky dry. Once my oncologist realized I was suffering from a spinal headache, she stopped the ATRA. I need to stay hydrated, and taking a medication that will dehydrate me won't help. Even if it is chemo.

Like I said, today has been cautiously good. I'm still a bit fatigued, but at least I have an appetite, and I'm drinking my fluids. I hope this means I'm out of the woods, and that I can make it to work on Monday (and to Brett's office to get my car!)

Thank you all for the continued thoughts and prayers. I'll keep you posted!

Wednesday, September 08, 2010

Girl's update!

Since our last follow up appointment at UCLA, in June, there has been a lot of good and not so good things happening for the Curran Girls. Let's bring you all up to speed, and start with Jenelle:

The medication changes for Jenelle have gone smoothly thus far. It took a few weeks, but we finally got her on a proper dose of Risperdol for her behavior. The difference is amazing. The sad part of the medication increase is that Jenelle appears docile, and "drugged" most of the time, which is most certainly the case. But with the overall calmness in her, is seems she has more control of herself. Not as much kicking and biting (which is good) and less pulling her hair out too. Now that we've finally mastered the right dose of Risperdol, we are going to start the Vimpant next week.

The summer passed for Jenelle pretty smoothly as far as seizures are concerned, but we had a few hiccups with her mic-key button/g-tube. One Saturday morning in August, Jenelle and I were home alone, while Jack and Brett were at football practice. We had a lovely morning and I had just fed Jenelle lunch. After lunch, I was planning a trip with Jenelle to the grocery store, and as we walked down the hall to the garage, I saw something on the floor in the hall... her mic-key button! Apparently, it had fallen out!

Immediately, I got our spare and took Jenelle to her room so I could reinsert it. I'd been told that if they are out longer than an hour, the hole to her stomach can seal up. I had no idea how long it had been out, but realized that when I fed her lunch, I didn't notice any "contents" oozing from her stomach, so it could have been a while. I tried to insert the replacement mic-key button, and it wouldn't budge. So, off to the ER we went where they saw us immediately. Since Jenelle has had her mic-key button for 5 years, the ER doctor told me it was unlikely that is sealed up. They applied a little lidocaine, and with a lot of effort they were able to get her mic-key button in! Jenelle giggled throughout the process.

The following Monday, I called our medical supply company to order a new replacement mic-key button, and they said they did not have authorization and that we'd need to see her GI. Luckily, Jenelle got in for a cancellation appointment the next day and we saw Dr. Idriese. Jenelle was due for her annual visit anyway.

All year I had been planning to ask Dr. Idriese if we were ready to completely get rid of the mic-key button. Jenelle has been taking food and medication by mouth for months now, and in light of our recent emergency, I thought it would be a good idea. Dr. Idriese didn't agree and made me realize that Jenelle will always be medically fragile, and if she were to get sick, she would get sick very fast so it was good to have a safe guard in place. Dr. Idriese was very impressed with Jenelle's new eating skills, and said that Jenelle was actually a "little overweight" on the chart for her age! (HUH?) If you've seen Jenelle in person recently, you know that she is far from overweight. If anything, she is so muscular, the muscle mass could be the factor on the scale. Anyway, Dr. Idriese took Jenelle off Pediasure and wants to see her in 3 months to make sure she is getting enough vitamins.

Jenelle has had a wonderful summer and is doing more new things. Recently, she has started reaching out and "retuning" hugs. She will actually put her arm around your neck. It is absolutely adorable. Also, Aunt Nicki was the proud recipient of Jenelle's first kiss (that Jenelle planted on Nicki!) Jenelle is just a love bug, and very happy. We couldn't be more pleased.

As for me, my summer has not gone so smoothly. I caught a cold/sinus infection in June and it just hasn't been easy to get rid of. When I last saw my oncologist, she told me she wanted to start seeing me every two months instead of every month. This had me very excited until the nurse practitioner called me in August to know why I hadn't been in to see her. Apparently, I still have to make the trip to UCLA every month, I just get to see the doctor every other month! So, I went to see the nurse practitioner, Karolina last Friday and all was well except that I had another sinus infection. This is my 4th sinus infection since June, so Karolina wants to get me into an ENT to make sure all is well. She prescribed me a really strong antibiotic on Friday (Biaxin) for 14 days and she wanted me to start again on the ATRA (Vitamin A Chemo) on Monday.

I started Biaxin on Saturday, and noticed that I started to have a dull headache throughout the day. We had a wonderful Labor Day weekend with lots of swimming and parties, but nothing stressful. On Monday, I started my ATRA, and by that evening, I had the worst headache of my life. I started vomiting, and my vision was blurry, so Brett and I paged Dr. Territo. She called back right away and told me to go to the ER.

Because it was close to midnight, I decided to try to make it to the morning. After some sleep, the headache was not as intense, but clearly not gone, so Brett took me to the ER where I got in very quickly. Because of my history with Leukemia, the ER took it very seriously and ordered a CT Scan right away. Prior to the scan I got an IV and a wonderful drug (Dilauted) that made the pain go away. The ER doctor called Dr. Territo and they both agreed, if the CT did not show a tumor or brain bleed, they wanted a spinal tap to rule out meningitis. Lucky me, the CT scan was clear (or "anatomically" correct as Brett argued with the doctor because Brett refused to believe I had a normal brain) so they prepped me for the spinal tap.

Compared to an epidural, and a bone marrow biopsy; the spinal tap was a breeze. I had to lie flat for an hour after and to wait for the results - which were normal. They did send some of the spinal fluid out for a culture test, but I won't have that result for another day or two. Having had cancer, it's one of those things we've learned all too well with Jenelle that you have to rule everything out as they could get out of hand quickly if undiagnosed. I'm relieved it isn't something serious, but am still in pain with the headaches that come and go. I spoke to Karolina today, and they have decided to stop the Biaxin. I hope that is the culprit, and that tomorrow is a new pain free day!

So, that should bring you up to date on the Curran Girls. Jack started school last Thursday at a new school and absolutely loves it. Last May, we decided to move him to our local public school so that he could be with friends from Little League. So far, the change has been great! He and Brett are both busy with football, and slowly we are getting into the coming Fall season.

Jenelle starts school tomorrow in the same program that she was in last year with the County. Her IEP is next Thursday, and Tustin Unified would still like to move Jenelle to a new school. Obviously, with the changes we plan to start with her seizure medications we would like to keep Jenelle in her same school, and in an environment where her teachers and caregivers know how to recognize her seizures. Hopefully the District will agree.

Thank you for continued thoughts and prayers - I'll keep you posted!

Wednesday, September 01, 2010

As promised quite a while ago... photos.

I must apologize... my updates are turning into "monthly" updates. Over the summer, I kept battling illness from sinus infections (and low counts and exhaustion.) Suddenly today I realized I hadn't posted the photos I uploaded two weeks ago... and promised to share a month ago. Things have been good, I'm just taking more time to rest myself. Anyway... as promised, photos!

Jack was voted onto the Tustin Eastern Little League All Star Team and the All Star Manager, Walter McMahon asked Brett to help him coach the team. So summer started off with Little League All Star madness. A special treat for Jack in being an All Star was that the games in his tournament (the 9/10 Pool Play Bracket) were all played on Curran Field at North East Santa Ana Little League. What an honor. Here is a photo of Jack stealing home in his first All Star Game on Curran Field - photo taken by Aunt Nicki Curran.

Here is a photo I managed to snap between the chain link fence. Brett coaching 1st base, Jack on 1st base and Curran Field in the background.

Almost the perfect Christmas Photo - just missing Jenelle who was asleep in the shade. Here we are posing after the game in front of the Curran Field scoreboard. And yes, for those that don't know, the field was named in honor of Brett's family, and all their many years of volunteer work for Little League and North East Santa Ana Little League.

It certainly was an All Star Summer with the 2010 MLB All Star Game in Anaheim this year. We took Jack and two friends to the MLB Fan Fest at Anaheim Stadium during the All Star Break and it was quite a treat for the serious baseball fans at heart. The Topps booth handed out free baseball cards to the boys, and in the midst of all the baseball fun, they took off to a secluded corner to "check out the cards".

Here is Jack enjoying our favorite summer treat, Ice Cream Drumsticks, with his friend Cousin Trevor, Tim and Connor.

Nana and Poppa George (my Mom and Dad) stopped by for breakfast on July 5 on their way to my cousin's daughter's wedding in San Diego. Although Mom wanted IHOP, I made some great pancakes at home.

Here is our sweetheart on 4th of July - loved her pony tails this year with the red, white and blue "firework" hair bows.

And during 4th of July weekend, we took the kids to "Big Bang Friday" at the Angels game. Here I am with Jack.

Daddy & Jenelle

Daddy gets the best laughs from Jenelle. She really enjoyed the game and the fireworks.

That is all for now, but that is not the end of our summer. I'll update more when I can.

Monday, August 02, 2010

Video tribute from a fan!

Today I received a link to a video created by one of our blog followers. A stranger who has been watching Jenelle's progress for many, many years. The video is beautiful, and I can't watch without crying.

Thank you all for the continued support. Sharing Jenelle with everyone is one of the best parts of being Jenelle's Mom. Thank you to reader Vicky for creating this video!


Monday, July 19, 2010

Girls follow up day at UCLA - Video EEG results

Jenelle and I had follow up appointments today at UCLA. Amazingly, I managed to schedule both appointments for this afternoon - a feat in itself! I had a blood draw first, then we met with Dr. Shields, followed by my appointment with my oncologist Dr. Territo. Good news was the result all around!

First, we met with Dr. Shields to discuss the results from Jenelle's video EEG in June. If you recall, we were concerned that Jenelle was having spasm seizures again, which could have put us back on some nasty meds. Dr. Shields said it was an urgent question that needed to be answered, and the Video EEG ruled out any instance of spasms. Some of the physical things we were seeing in Jenelle during seizures and when waking were definitely not spasms. That was a relief to hear.

The other good news in the EEG results were that we captured a few of Jenelle's "staring" absence seizures (also known as complex partial seizures.) Of course, Jenelle always has to be different from the norm. While her seizures look like classic absence seizures (staring, smacking lips, drooling and picking of clothes or skin with the hands during the seizure) Jenelle's absence seizure look more like a generalized seizure on the EEG. I know that sounds confusing, and it is. To make it easy for everyone, the EEG confirmed seizure activity, but thankfully it was not bad as we feared.

So where do we go from here? With a child like Jenelle, who is obviously always going to have seizures, we need to determine the best course of action to take without hindering her progress. Yes, Jenelle has had too many seizures in the last few months; two trips to the ER by ambulance are two too many. But, we always have to focus on seizure control as opposed to trying to be seizure free. Jenelle is progressing, developing and doing well. And, seizures are a part of her daily life. Do we want to risk her progress by trying to obtain something that isn't realistic? The answer of course is no. We will only be at that point should we find that Jenelle starts losing skills because of her seizures.

As for her medications, Jenelle is already almost to the max of the drug Felbatol. This means, there is no room to increase the dose. Dr. Shields has been studying a new drug that has recently been approved for use in patients with Lennox Gastaut Syndrome. It is called Vimpant, and apparently it works well on complex partial seizures. He wants to give it a try to see if it can make a difference, and help reduce the absence seizures (also called complex partial) we are seeing in Jenelle. Vimpant is only approved by the FDA for children with a diagnosis of LGS. We may have some trouble getting it, so we are not starting right away (thought I have a prescription to get the process started with our pharmacy.)

In the mean time, we mentioned that Jenelle's behavior of late has been a little worse. For those of you who know her in person, Jenelle is very strong and very active. Lately, she has started to kick and pull her hair and bite. Obviously, these are not behaviors we want to leave untreated, so we are going to increase her Risperdol until we can get the behavior under control. Apparently, we have a lot of room for an increase on that medication. Once we reach a good dose to control her behavior better, we will then start our wean onto Vimpant. We see Dr. Shields again in early November, and that should be good timing wise to see what effect, if any, Vimpant has on Jenelle's seizures.

Our focus in the coming months will be to make these changes in medication with as little disruption to Jenelle's daily living as possible. Please keep her in your positive thoughts and prayers that things so smoothly.

As for my follow up appointment today, my numbers (from the blood work) are good and I am still cancer free. I haven't updated in a while because I got sick just before 4th of July. On June 29, I left work with a sore throat. My blood work from the week before showed a drop in my neutrophil and white blood cell count. I spoke to the nurse and she told that I could be getting sick. The next morning I really felt horrible and decided to stay home. I called the nurse again and she asked me to have my blood work done again so she could make sure my numbers hadn't fallen. The numbers were the same and my neutrophils were at 800 (remember anything below 500 and I get a lovely stay at the hospital). They had me stop my daily chemo regime. The next day, I started running a fever of 100.7 (anything over 100 for me is considered a fever, especially when my counts are below 1,000.) The doctor put me on a Z-pack and told me not to return to work. After a few days on the antibiotic, I started to feel better, but still very fatigued.

Work has been extremely busy of late, and that hasn't really helped me rest much. Just when I think I can start to take on more, my body find a way to remind me that my health is still fragile. Brett has been wonderful and is giving me some much needed rest at home. Baseball has kept us busy with the All Star Game and the festivities surrounding it last week. I have some fun photos to share soon. Jack's travel ball team that Brett coaches has had two tournaments out of town. While it is fun, I am saying no to certain things like Angels games and after game parties with Jack's team so as not to over do. I remind myself that just a year ago, I did not have the strength to do nearly as much as I do today. I try to remember to do one thing at a time, and try not to overdo.

So good news all around for the Curran girls. I do have many fun photos to share, but right now my body is telling me to get some sleep as tomorrow is a busy day at work. Thank you for the continued thoughts and prayers. I'll keep you posted!

Sunday, June 27, 2010

Jenelle eating a cup cake

One of Jenelle's new goals in school is to start using her hands to feed herself. At school, they are using Cheese-it Crackers and having some success. On Father's Day, I made some lemon cup cakes and decided to let Jenelle try to eat one on her own while I frosted them. Jack tried to get involved as well. Enjoy!

Friday, June 18, 2010

Summer Begins...

Jack finished the last day of 3rd grade on Wednesday, so Summer has official begun at the Curran house. To celebrate, I thought I'd share some photos. First, here are some photos from the girl's slumber party at UCLA:

First we have Jenelle with her "Princess Hat" that helped to keep her from pulling out the EEG connectors that were glued to her head. That hat lasted all of an hour before she pulled it off (at least the probes stayed put!)

Here is a photo of our room - can you see Pauley Pavillion out the window in the background? In the foreground, you can see the EEG monitor. The waves are chaotic because Jenelle was wiggly, not because she was seizing.

Here is Jenelle the next morning - just starting to get irritated with the whole thing.

And you may think this is an odd photo, but I just had to share. This is the gurney in the ER. Now, if there are any "Grey's Anatomy" fans out there, you may notice that in the show, patients often have pink or navy or peach colored sheets. For those of us who are "frequent fliers" in hospitals, we know this is a bunch of hog wash. Hospitals use white sheets so they can bleach the heck out of them!
This photo below is of the gurney in the ER at UCLA. I immediately noticed that is was a soft cotton jersey like material, and definitely not white. I made a comment to our nurse, and he told me it was something "new" they were trying. They had hoped that the softness of the sheets, and the color would be soothing to patients. I must say, it looked comfy, and definitely "soothing!"

Jack's last assignment for 3rd grade was an oral report on a sports figure that is no longer playing their sport. No, Jack has not converted to being a Red Sox fan, but he did do an oral report on Ted Williams, the Greatest Hitter ever. Here is Jack working on his poster of Ted Williams.

The night before Jack's last day of school, he and Daddy got into a "tickle fight" which lead into a dog pile. Jenelle enjoyed their laughter so much, she decided to get in on the fun. So Jack and Daddy in turn dog piled on Jenelle. As you can see, she loved every minute of it!

Finally, tomorrow is the first game for the Little League 9 and 10 year old All Star Tournament. Jack (who goes by the nick name "JD" in baseball) was voted onto the All Star team by the coaches. We are very proud of him. I had to decorate the car to show off our pride!

Go Tustin Eastern Little League!
That is all for now. Happy Father's Day - enjoy the beautiful weekend ahead!

Sunday, June 13, 2010

Home without answers

Jenelle and I left UCLA on Wednesday afternoon with few answers from her EEG. Dr. Shields wants to review all 24 hours and see us in 4 weeks. In the meantime, no change in medications. From the preliminary report, Dr. Shields feels that Jenelle is not having spasms, so that is good news. Why she has had an increase in seizures, we still don't know.

I started ATRA (Vitamin A, my third chemo med) on Thursday and I've been really tired. Watching Jenelle in the hospital for two days didn't help. Thankfully, Brett has let me sleep in all weekend. It was very challenging trying to keep Jenelle in a hospital bed for two days. She fell out three times; once I caught her, and the other two times she fell to the floor. She wasn't hurt, but a little startled. I'm glad to be home.

That is all for now. I will keep you posted. Thank you for sending those seizure vibes. Whether or not it worked, we have yet to know.

Tuesday, June 08, 2010

The other side

In 7 years, I've really learned a lot about reading an EEG. The waves on the screen look like seismic quakes. I can tell when she seizes, and when the waves are normal. Some of the large waves look like seizures, but they are normal - usually because she is moving. But right now, she is in a deep sleep, and the waves are everywhere on the screen. It makes me wonder, has she been having seizures in her sleep without us knowing? Another question for Dr. Shields in the morning.

This is a strange experience for me, being on the other side of the hospital bed. The care giver and not the patient. I know this hospital so well. I lived here for a month of my life. I'm not used to this side of the bed. I went down a bit ago after Jenelle fell into a deep sleep to get something at the dinning commons. When I came back in, I had to show ID. I didn't realize you had to do that, I guess because I was always a patient. My food came from room service, and I didn't parade in the lobby after 9:00 p.m.

A year ago, I was dying at the hospital in Santa Monica. I've amused myself looking at the calendar of late, because I barely remember anything this time last year. Looking back at the blog entries helps. Jenelle's room is set up exactly the same as the one where I spent one of the worst month of my life. Not remembering that time is unavoidable. Yet, I remind myself that I am fine now. I survived, so I could continue to be a caregiver to Jenelle. So I could sit on the other side of the bed with her.

Brett had to stay home with Jack today. Jack was voted onto the 9 & 10 Year old All Star Team, and Brett is helping to coach. Jack has school and they have practice. Brett would love Jenelle's room - it overlooks Pauley Pavilion, and the football practice field. My room was on the other side. Brett always wanted me to ask to be moved.

Thank you for the continued thoughts, seizure vibes and prayers. I'm exhausted, but I'll keep you posted.

Finally in a room

Start sending those seizure vibes!

We finally got a room around 5:00. Dr. Shields came to see us in the ER, and had the EEG technician put the electrodes on Jenelle while in the ER so we didn't waste any time once we got a room. Unfortunately, just as the tech finished putting on the EEG electrodes, Jenelle had a huge tonic seizure requiring oxygen (I think from the stress of being forced to stay still - I was lying on top of her while they put in the electrodes.) It was unfortunate, because she wasn't hooked up to the EEG yet.

We are now in our room waiting for dinner to arrive (Mac N Cheese for Jenelle - I'll fend for myself later tonight when she's asleep.) Jenelle has had a seizure since we got up to her room (and while hooked onto the EEG), so that's a good thing. Hopefully we'll get some answers.

I'll keep you posted.

And, we wait...

When we arrived at UCLA Mattel Children's around 11:00 this morning, admissions wanted to turn us away because they didn't have beds. While in the admissions waiting room, Jenelle's neurologist called me on my cell phone and told me to go to the ER to get admitted from there. Dr. Shields wants to get her EEG ASAP, and wanted them to know this wasn't an elective admission.

So, right now we are sitting in the ER waiting for a bed. I feel horrible, like we're using valuable resources just to get admitted, but at least the ER is not busy right now.

Justify Full
The only good thing (if you can call it that) is that since we arrived in the ER, Jenelle has had 8 seizures, the longest going 4 minutes (in the last hour). I just hope she keeps having them for the EEG, if we get admitted.

So, for right now, send seizure vibes, but send "get a bed" vibes first! ;) I'll keep you posted.

Off to UCLA for a girls slumber party!

Jenelle and I are on our way to UCLA for her 24 hour video EEG. Please send lots of seizure vibes for Jenelle (yes, we want her to have seizures during the EEG) so she can give the doctors lots of information. I'll post more when we get there!

Sunday, June 06, 2010

Cancer Survivor's Day @ Team in Training/San Diego

The first Sunday of June is National Cancer Survivor's Day. I consider today my first (and not last) celebration of this day, because a year ago to this day, even though I was cancer free, I almost died from neutropenic fever. In honor of this special day, I made the trip to San Diego with Jenelle and Brett's Aunt Nicki to cheer on Brett's cousin Bridget as she ran the San Diego Rock N Roll Marathon with Team in Training. Even as a spectator, it was such an inspirational event!

I made a sign with "Go Bridget" on one side and "KCA" on the other. We arrived around 9:00 a.m. at the 16 mile mark and started cheering on the runners. It was so amazing. Many loved our "KCA" sign, and sometimes I would yell "Thank you from a Survivor" and I would get applause. It was awesome. Bridget had no idea that we were going to cheer her on, and was surprised and excited to see us with our huge sign! We thought if she saw us at the 16 mile mark, she'd be willing to go the last 10!

After seeing Bridget pass the 16 mile mark, we took our time to get some lunch, and then park at Qualcomm Stadium to take the Trolley to Sea World for the finish line. Our timing was perfect, and we arrived about 20 minutes before Bridget came across the finish line. After we went to the Team in Training tent and again I was really inspired to see all the participants. I've always thought a marathon was out of my reach, but if Bridget can do it, if I can beat cancer.... well, maybe someday, and definitely with Team in Training!

Jenelle enjoyed the day as well, but had a few seizures today. Speaking of which, we are scheduled for her 24 hour video EEG for this Tuesday at UCLA. I'm waiting for confirmation, but am pretty sure things are still a go. I'm glad we got in soon, because I'd like to get an answer one way or another about her seizures.

I will update later on Jenelle when I have more information. Here are some photos for you to enjoy!

Jenelle and Nicki at the 16 mile mark waiting for Bridget.

"Kick Cancer's Ass"

"Bridget surprised to see us!"

"Bridget crossing the finish line!"

Go Team! KCA!

Tuesday, May 18, 2010

Girls day at UCLA

Jenelle and I spent the day together yesterday seeing our specialists at UCLA. It was literally a miracle to get both appointments scheduled for the same day. Thankfully, we were able to get up there and back without any major delays.

Jenelle had her appointment first with Dr. Shields. Of course, we had lots to discuss with her two recent trips to the ER for seizures. Last week, another Mom from my epilepsy support group e-mailed everyone to report that her daughter (who has LGS and is similar in age to Jenelle) had a follow up at UCLA and they thought she might be having infantile spasms again. I thought this update was interesting, because Jenelle's seizures last Saturday reminded me of the seizures she had when she was having infantile spasms more than 6 years ago.

Infantile spasms is a very severe form of epilepsy that needs to be treated quickly. It usually occurs in infants, ages 6 months to 2 years. If you recall, Jenelle was first diagnosed with infantile spasms at age 10 months. She was having over 300+ seizures a day. We first tried a steroid treatment ACTH, but ultimately used the drug Vigabatrin (obtained from Canada because it was not FDA approved) to help her spasms go away. If untreated, infantile spasms can cause brain damage, and further regression in development.

I was so thankful this Mom had sent the timely update, because I thought it was impossible to have infantile spasms again, until I asked Dr. Shields if it was possible. He said it is possible to have "epileptic spasms" and he wants a 24 hour video EEG to see if Jenelle's brain waves demonstrate the typical hypsarythmia pattern associated with infantile spasms/epileptic spasms has returned. If it has, Jenelle will have to go back on Vigabatrin. The good news in that is that Vigabatrin is now FDA approved, and we can get it here without the trouble of ordering it from Canada and paying for it out of pocket.

If the EEG does not confirm epileptic spasms, Dr. Shields wants to add a new drug to Jenelle's anti-seizure medications called Vimpat. Jenelle is already at the maximum dose of Felbatol, so he thinks its a good idea to add on another drug that we may be able to switch to completely. Either way, Jenelle is having more seizures so we need to figure out what is going on and made a decision on the best course of action. This will be a slow process as we need to do one thing at a time. First we need to determine if Jenelle is having spasms again. The Video EEG will hopefully give us some answers.

As always, Dr. Shields was very happy to see Jenelle's progress. She was in an excellent mood and was very happy. He was so pleased to see her act so different.

After seeing Dr. Shields, I had a follow up with Dr. Territo. All of my blood levels and counts are good and things remain good for me. This month will be one year since my awful reaction to my last dose of IV Chemo - or as I told Dr. Territo, one year since I almost died! She was also excited that in August, it will be one year on maintenance chemo, with one year down and one to go!

This weekend, Brett and I hosted the semi-annual Texas Hold'em Poker Tournament at our home and raised $515 for the Leukemia Lymphoma Society to help support Brett's cousin Bridget participate in the Team In Training Rock N Roll Marathon in San Diego! Good luck Bridget! If you would like to make a donation for Bridget, please check out her donation page by clicking here.

That is all for now. Thanks for the continued thoughts and prayers. I'll keep you posted!

Quality Time with JD & The Batting Stance Guy

Last Thursday after baseball practice, I took Jack (JD) and two friends Isaiah and Grant to a book signing at Barnes N Nobel in Huntington Beach. The You Tube celebrity Gar Ryness aka "The Batting Stance Guy" has just published a book about the talent he describes as "the least marketable skill in America." He imitates MLB ball player batting stances. And he's pretty hysterical. The book is called "The Batting Stance Guy: A Love Letter to Baseball" and can be purchased everywhere.

I feel like I've known BSG for a long time now. I've been following him for over a year when he first started posting videos on You Tube. After his videos first came out, I started e-mailing him to harass him into imitating the Angels; specifically players like Jim Edmonds, Chili Davis, JT Snow and Vlad Guerrero. I was always impressed because he always replied to my e-mail. The day before the book signing event in Huntington Beach, BSG posted on my Facebook page that he hoped to see me there. To my surprise, when we walked up to get our books autographed, he recognized me. The boys were totally impressed and had a blast. I think the Batting Stance Guy enjoyed having them ask him all sorts of questions as well. It was a total "win win."
Here are some photos from our fun evening.

Jack, Me, The Batting Stance Guy, Isaiah and Grant

Jack learning to imitate Gary Sheffield.

The Batting Stance Guy autographing JD's wiffle ball bat. Notice the news crew from Japan in the background? The boys thought it was fantastic that they were going to be on TV, until they learned it was going to air in Japan!

Here is a video of their Q & A:

Friday, May 14, 2010

All clear!

Quickly - I just got back from the pulmonologist and I have the "all clear" on my CT Scan and PFT test. He believes what they are seeing is just chemo scar tissue. Thank you for the thoughts and prayers. I have some updating to do, but I'm off to watch Jack's last Little League game of the season! Go Cardinals!

Sunday, May 09, 2010

Another Ambulance Ride!

Our weekend was not short of drama unfortunately. Miss Jenelle had some pretty bad seizures at the baseball field on Saturday and had to be transported by ambulance to the ER, where she was released two hours later. We don't know what brought them on, but the ER took a urine sample to make sure her UTI from two weeks ago was gone.

She had been acting fine in the morning on Saturday, and even participated in her Challenger game. She was happy during the game, but had been pretty cranky Friday evening, and shortly after the game. We couldn't quite figure out the crankiness, other than thinking she was hungry. Jack had a baseball game about an hour and a half after Jenelle's so she and I had waited for it to start hanging around the snack bar. Saturday was pretty warm.

Jack's game started around 11:30. I was supposed to keep score, but another parent who thought she had a commitment was able to take over for me. This turned out to be a good thing since I was able to be with Grandma and Grandpa when Jenelle started having seizures during the game. Coincidentally, Brett (who manages Jack's team) was watching the game from his car on a side street due to his being "suspended" from managing this game. That's another story in itself, but turned out to be a fortunate twist as he was able to go to the ER with Jenelle and me.

During the 3rd inning, I was helping the coaches with pitch count, and was near the score keeping booth. When the inning ended, I went back to sit with Grandma, Grandpa and Jenelle. Grandma motioned for me to be quiet because Jenelle had "fallen asleep." Jenelle was lying on the ground behind our chairs. Five or ten minute later, I noticed Jenelle moving as if she was trying to wake. I looked behind my chair to check on her and realized she was seizing. Grandma and I quickly got her comfortable and started to time the seizure. When she approached the 5 minute mark, Grandma told me to give her Diastat.

In my mind, I was hoping she would just come around again because I didn't want the distraction of calling 911 for Jack's team and because Brett wasn't allowed on the field. But when I realized that her seizure wasn't stopping, and that she could have been seizing when Grandma thought she was asleep, I figured it was better to be safe than sorry. When Jenelle had Diastat two weeks ago, her heart rate dropped as did her oxygen intake. Being in the middle of school grounds so far away from my car and home, it was a good decision. We gave Jenelle Diastat, and called 911.

Brett was able to open the gate and flag the ambulance onto the field so they could get to Jenelle. She was still non-responsive so they put her on oxygen. We decided that Brett should go in the ambulance with Jenelle to the ER, and I followed in my car. As it turned out, I beat the ambulance to the ER. Brett said her heart rate was very low and the ambulance actually used lights and sirens to get there (to my credit, I left before they were off the field.) I felt horrible for Jack as he was still playing his game, and could only watch. He's been so used to this in his lifetime that he handled it well. Grandma and Grandpa stayed behind to be with him.

At the ER they took blood and inserted an IV. Before they could get her on fluids, Jenelle started to wake and was pretty cranky. Because of her UTI two weeks ago, they took urine to get a culture and we should know the results tomorrow. Because she had no other signs of illness (fever, etc.) they didn't feel a need to run blood work. After an hour and a half, we were released. Jenelle has been sleepy and cranky ever since, but is doing fine.

We see Dr. Shields a week from Monday, so we have a lot of questions for him. We've had a wonderful and restful Sunday. The kids gave me some wonderful handmade gifts and we had a wonderful brunch with our family this morning.

Sadly, on Saturday evening we learned the news that our little league friend who had leukemia (I mentioned him earlier in the season) passed away around the same time Jenelle was transported to the ER. We are keeping the Abbey family in our thoughts and prayers. It has been a tough weekend for our Little League family, but we are so appreciative of all the love and support from everyone. Thanks again for the thoughts and prayers. I'll keep you posted.

Friday, May 07, 2010

The Special Mom, by Erma Bombeck

Well, this weekend is Mother's Day and I haven't shared this one in a few years, so I thought I'd post it again. I want to share with you my favorite Erma Bombeck writing about "special" Moms in honor of Mother's Day.

I must note that I disagree with Erma on one part of this piece - we (special needs moms) are not saints, we are just doing what any parent would do. For the most part, Erma has perfectly described all that God has shown me in my very special daughter. Enjoy and Happy Mother's Day!

The Special Mom by Erma Bombeck, 1980

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia. Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma'* for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised midair. God smiles. "A mirror will suffice."

*Re-reading this again brought tears to my eyes. It took 6 years for Jenelle to finally say "Momma" for the first time, and I had to hear it on the telephone while in a hospital bed when I was hitting the worst of induction chemo. And even in the most difficult of times for me, I understood the silver lining God had planned. My absence from home gave Jenelle the strength to find her voice and speak my name. That tiny miracle helped me get through my cancer. God truly does work in mysterious ways.

Wednesday, May 05, 2010

Another test this Friday

Just wanted to check in briefly since so many of you have been asking about the results of my CT scan last Friday. The answer is I don't know yet. I called my pulmonologist this morning and his nurse would not give me anything over the phone (which is pretty standard HIPPA practice these days). She told me that Dr. Ross wanted me to have a Pulmonary Function Test in addition to the CT scan, and that after I've done that, he will go over the results of both with me. She also reassured me that if the CT had showed something urgent, he would have had her call me in sooner, so that is a relief.

My PFT test is scheduled for Friday at 7:15 am. I'm sleepy just thinking about it.

Jenelle is doing great. We had to take her wheelchair in this morning for some much needed repair. I spoke to her teacher and the bus company, and they think we might be able to try out a "harness" system for Jenelle to use to ride on the bus. Jenelle's walking has really improved, and she is managing stairs very well with little assistance. The "harness" is like a 5 point strap vest that can be used to secure Jenelle into a regular bus seat without the need for her wheelchair! Of course, we'd keep her chair close at hand, but it would be nice not to have to set it up every morning to get her loaded on the bus. We'll discuss the "harness" at her next IEP in September.

Jack has been doing great. I can't believe the end of school and the end of the regular Little League season are coming in the next few weeks. Jack's team is doing well, and he has become a very good pitcher. A chip off the old block. Brett is as busy as ever and currently at a Little League Board Meeting as I type. I always wonder, which last longer, the meeting, or the "after meetings?" ;)

Finally, I am sorry I didn't share the story of the photo below. Every year, our league has a professional photographer come to the games to take professional sports photos of the kids. Over the years, I've gotten to know him and he really does enjoy his work. Each year that he has photographed the Challengers, he gives all of the photos to the parents for free.

The photo below was an absolute candid moment. The photographer, Lou Sautrich, was taking photos from the out field with his telephoto lens. I was sitting on that bucket writing names of the kids on the raffle tickets in my hand - the team was raffling off tickets to that night's Angels game, and I wanted to make sure I counted each kid as they came to bat. Jenelle had just crossed home plate with her buddy, saw me sitting on the bucket and walked over to me to lean in for a hug. It was amazing. She saw me, recognized me, and came over to me as if to say, "This is my Mommy!" Although it appears that I'm looking straight at the camera, I didn't know he captured this moment until I saw it in the photo binder. It is my absolute new favorite photo. The love and joy captured in that photo just says it all. Thank you Lou!

That is all for now - I'll keep you posted.

Thursday, April 29, 2010

Thursday, April 22, 2010

A New Look Here and A Different Follow Up...

I decided to make some changes to the look of this place. I hope you like it. :)

Today I had a follow up at UCLA. It turned out to be a "not so usual" follow up. If you recall, two weeks ago I had to go to the ER for an asthma attack. As I am a firm believer in not worrying about something until there is something to worry about, I didn't mention to everyone this small little thing they found on my chest x-ray at the ER. A spot or some sort of lesion. I was instructed to follow up with my Pulmonologist, so I called his office to have them check my x-ray online. My Pulmonologist called back and said the spot was not on any of his previous scans. The last time he saw me was a few months prior to my cancer diagnosis. He instructed me to get my records from UCLA, and he wanted a second x-ray. I left a message with UCLA, and didn't think about it again until today.

When I met with the nurse practitioner today at UCLA, she asked me about my ER visit. When I explained to the nurse that my Pulmonologist wanted a second x-ray, she was concerned. She pulled my old records herself, and found that back in June (when I was in the hospital for neutropenic fever) a spot had shown up on my x-ray and CT scan. She dug into my records a little further, and noticed that the spot was also vaguely visible on a CT scan I had done in December 2008. The report said it was scar tissue from a possible pulmonary infection during induction chemo. She told me not to worry that it was most likely scar tissue, and got records and a CD of my scans ready for my Pulmonologist. She did however think his request for another x-ray wasn't enough, and tried to get authorization for an emergency CT scan at UCLA today. Insurance wouldn't approve it, so the best she could do was tomorrow at Hoag. Other than that, everything is good and I am to come back next month.

I decided to swing by my Pulmonologist's office in Huntington Beach on my way back from UCLA. Oddly enough, he had surgery earlier this week, so I knew I wasn't going to have an appointment any time soon. When I walked in, to my surprise my Pulmonologist was in the office wearing a c-spine neck brace. His nurse said she was just as surprised as I was but he apparently wanted to get started seeing patients he had to reschedule. When I gave her the records from UCLA, she asked if I had time as they had a cancellation. I decided it would help me sleep better to get it over, and agreed to read a book for an hour and wait.

Because a lot has changed with my medical history, my Pulmonologist had a lot of catching up to do. I have had two asthma attacks this week, so he decided to put me back on asthma maintenance meds. After the exam, we went into his office to talk. He pulled up my scans from UCLA, and unfortunately did not agree with my oncologist. The scar tissue UCLA had been seeing in their reports was in a different area of my lung. He did not see the new lesion that they found two weeks ago on my old scans. He agreed that I need a CT scan in the next week or so.

When a cancer patient in remission hears things like "spots" and "lesions", it tends to make one worry a little. Even if we have a firm stance on not worrying about things until there is something to worry about. When I told my Pulmonologist that I was concerned, he was a bit more reassuring. He was honest and said he didn't know if it was cancer or not, but even if it was, it isn't something that needs to be immediately treated. He said that one of my chemo drugs, Methotrexate, can offend have the side effect of scar tissue and benign lesions growing on the lungs. That last part is much more reassuring. He also said with my history of cancer, he as well as other doctors are always going to be more cautious. And for some reason, that is a comfort to hear.

Tomorrow I am going to make the appointment for the CT scan, and we should know more in two or three weeks. See, nothing to worry about! ;)

As for Jenelle, she is doing well after her bad seizures last week. The ER called on Sunday and she did have a bladder infection. She has been happy as a clam and is now on antibiotics.

That is all for now. I will keep you posted. Thank you for the continued thoughts and prayers.