Friday, November 28, 2008

Humor in the sorrow

Understandably, I have had lots of emotions in the last two days. Moments of tears, moments of fear, moments of anxiety (which Ativan is the perfect cure) and laughter. Each time we meet a new nurse, I introduce myself and Brett, and tell her we are all about being positive, with some smart ass sass. Everyone has been wonderful here.

I have this large IV poll next to my bed, and sometimes have three lines going into my central line. Earlier tonight I told Brett, "I was thinking about getting a pole (i.e. stripper pole) in our bedroom, but this is not what I had in mind!" Brett has been wonderful, and he has not left my side. He told me it is worse for him when he's alone because he can't handle his emotions. My parents arrived this afternoon, and Brett will stay here through Sunday, and Mom will start staying with me on Sunday night. That is the plan for now.

I had the absolute best ambulance ride up the 405 to UCLA around 3pm on Thanksgiving. My transport guys were wonderful; a really tall black guy who played basketball at Kansas was my driver, and a really large guy sat next to me in the back cracking jokes as we people watched in traffic. The two had never transported anyone to UCLA, and with the hospital being new, we got lost on the way. My doctor at Hoag said I had to be in my bed at UCLA by 5pm, or I would not get to start my chemo. We left at 3:30 and hit traffic, but these two knights were determined to get me in bed by 5:00.

We hit bumper to bumper traffic at LAX, and they were told not to use the sirens. As we inched close to the Wilshire exit, my driver said, "We have 15 minutes, I'm going Code 3" - next thing I knew, sirens were blaring and we were running lights and driving down the wrong side of Wilshire. Because these guys didn't know where the "new" hospital ER was, they turned on Le Conte to drive past the old one. At this point we realized we were lost. We drove up Hilgard, past the Tri Delta house and sorority row, then took a small road down the center of campus. Still not sign of the ER. And of course, it being Thanksgiving, the campus was deserted. When we did find a lone man walking down the road, the drive tooted the sirens and yelled, "Where's the ER?" Startled and possibly in need of new underwear, the guy pointed up the street and off we went.

When they got me to my floor, they took me to my new room. Wouldn't you know it, the floor had just been waxed, so they had to find a new room. These guys were adamant about getting me in bed by 5pm. I overheard the nurse say, "Room 11 is open", so I looked at my guys and said, "11 is my lucky number!" My driver shouted, "This woman needs room 11 right now!" and they swiftly carried me to my new home. When I transferred myself onto the bed, the three of us looked at the clock - 4:59 p.m.

High fives and fist bumps went around the room, and my paramedic knights bid me good luck and farewell. So, my entrance to UCLA had flare no doubt. And we were laughing all the way.

I miss the kids, especially Jenelle. They have been staying with Brett's parents. Tonight, I spoke to Jenelle, and Grandma said she gave me the biggest smile. Brett's parents are bringing them tomorrow for a brief visit. I am looking forward to it. Jack misses me, but knows I am sick. He will be OK.

Update on Mommy

The night before Thanksgiving, 2008 I was diagnosed with Leukemia and admitted to our local hospital.  What you read below is the first email/post that I sent out to all of our friends and family.  During 2008 and after, this blog changed and evolved.  I kept both my cancer updates and Jenelle's seizure updates going consistently, and I hope that I've become more open with not just Jenelle's journey, but my own.  Here is that first post: 
I was diagnosed with Acute Myeloid Leukemia/Acute Promyelocytic Leukemia (AML/APL) on Wednesday. On Thanksgiving, I was transferred from Hoag Hospital to UCLA because UCLA has a more advanced form of chemotherapy in which to treat my specific type of leukemia.

I'm told that if you have to have Leukemia, the type I have is the one you want because it's the most treatable. There is a 70 to 90% success rate with UCLA's treatment. Hoag was absolutely wonderful, but I have a greater feeling of comfort being here at UCLA with the best doctors in the world. I am in the brand spanking new Ronald Reagan UCLA Medical Center hospital, and it is like being in a top notch hotel (with internet access - YAY!) I am told for this first round of chemo, I will be here for about a month. We're hoping I can get home in time for Christmas.

I started chemotherapy last night and so far so good. As you now I have a positive attitude about most things in life. I realize it's going to get tough, but it will be just a short interruption in life on the road to getting well.

I cannot have flowers or plants, but visitors are OK. Please stay away if you think you are the slightest bit ill. The hardest part will be being away from the kids, but I realize it is only temporary. We're not really sure what we need right now, and I'm sure Brett will need some help with the kids. We know from past experience that our friends and family are a wonderful support so thank you in advance. I'm only sorry that we have to lean on you all again.

I will try to post updates about me here, rather than send out e-mails. It's just easier putting it all in one place, and I'm familiar with using this format, so I'll stick with what I know to keep it simple.

Thank you for the continued thoughts and prayers. Please keep them coming.

Wednesday, November 26, 2008

Mommy needs prayers

Dear Friends and Family,

This has always been a place for Jenelle, but we just got news today that I have been diagnosed with Leukemia. I am leaving this evening for the hospital to start chemotherapy and will be there for a month.

This is going to be hard, but I will stay positive. I have a wonderful family that needs me. Please keep me in your thougths and prayers.


Thursday, November 20, 2008

Update on Jenelle's illness

Just wanted to give you a little update on our Jenelle. Since coming home Tuesday, she has still been running a low grade fever, and this morning she started vomiting. She has moments where she seems very normal for Jenelle and is bouncing around playing with toys, and moments where she is very cranky and obviously not feeling well. The good news is that her seizures are back under control, and I haven't noticed any since Tuesday morning. I've been in touch with her teacher and was told that two more classmates have gone home this week with fever of 104. That definitely makes me feel better knowing that it is a viral bug, and not some undiagnosed problem Jenelle can't tell us about. We all know how miserable it can be to be sick.

One thing I have been enjoying is the cuddling time I've had with Jenelle this week. Anyone in the family will tell you that we can always tell when Jenelle is not well because she likes to cuddle when she is sick. Along the same lines, I also have a very sweet story to share; during her illness Jenelle has really shown a preference for wanting her Mommy. The first time I noticed it was in the ER, when I got up to use the bathroom. As I sat up from the edge of her bed to leave the room, Jenelle sat up and appeared to almost reach for me. When I got back, Brett told me her eyes followed me out of the room. On Tuesday afternoon, Brett's Aunt Nicki noticed the same thing that Jenelle's eyes seemed to follow me around the room, as if she didn't want me far from her side. Jenelle has never been one to show preference for anyone, or any type of "stranger danger" when approached by new visitors. So to see her act this way is quite a special treat. And not to say she doesn't love her Daddy just as much, when Brett got home today to allow me to come to work, Jenelle stood up and walked over to him right away to give him a hug.

Hopefully we'll be rid of this bug soon, and Jenelle will be well enough for Thanksgiving. Thanks for the continued thoughts and prayers. I'll keep you posted!

Wednesday, November 19, 2008

Overnight stay at CHOC

Well, in the spirit of Epilepsy Awareness Month, Jenelle decided to give us her own personal demonstration on the dangers that viral illness can threaten the seizure threshold. Long story short, she had an over night stay on Monday at Children's Hospital Orange County for observation of uncontrolled seizures.

Last Friday, Jenelle was sent home from school with a low grade fever of 101. As a precaution we took her to the doctor so they could check the usual culprits; ears, throat, etc. She was fine and in fact giggled her way through the exam. Over the weekend her temperature was normal, and she was acting fine except on Sunday, when she started to get unusually cranky. She had no fever so we sent her to school on Monday.

In the early afternoon on Monday, Jenelle's teacher called to tell me Jenelle was having some increased seizures. We talked about timing them, and she wanted to watch her a little longer before using her Diastat. About a half an hour later, she called back to tell me her seizures were clustering too long, so they were going to give her Diastat. I told her I was on the way, and made it to her school pretty quickly. When I got there, Jenelle was sleeping (post ictal) on her side, and her skin was very mottled and blue looking. Shortly before I arrived, they took her temperature and it was 104. The teacher had Tylenol ready for me to give her (it's rather funny now to think the school could giver her Diastat, but not Tylenol) so I did. While looking at Jenelle, we noticed she had some shallow breathing, so I made the decision to call an ambulance. I had been planning to take her straight to the ER, but was not comfortable transporting her like that in my car, especially with it being the same time that school was letting out.

The Paramedics and Ambulance arrived very quickly and put Jenelle on blow by oxygen. After a couple of minutes on oxygen, she started to open her eyes and come around. At this point, her temperature was 103. In all, we believe that Jenelle was having cluster seizures and probably seized a total of 45 minutes out of an hour (in clusters, not one long seizure but rather a lot of little ones.) As some of you know, Jenelle's cousin is at CHOC in the PICU recovering from a stroke due to complications with her shunt. Ironically, one of the paramedics recognized our last name and asked if we were related. Not a good month for the Curran family to say the least.

As it turns out, the ambulance was a good idea because Monday night was the busiest night of the year at CHOC/St. Joseph ER. Even with arriving by Ambulance, it took over 6 hours to assess Jenelle's condition. They took blood and urine samples to rule out infection, and both came back normal. The doctor believes she has some sort of viral illness. We arrived at 3:30, and around 7:30 Jenelle started seizing again, this time she seized for 13 out of 15 minutes. The ER quickly gave her some Ativan and it seemed to do the trick. Around 10:00 p.m., we made the decision to admit Jenelle for observation. Immediately when we arrived, the ER asked for the number to Dr. Shields at UCLA and put in a call to him for instructions on the seizures. UCLA was in charge of everything involving neurology via phone and gave CHOC a good plan on how to treat her seizures.

We finally got to a room around midnight, and Jenelle was still awake but out of it until 2:00 a.m. Jenelle woke with a fever of 102 on Tuesday morning, and stayed asleep most of the day. I went home to shower and get Jack from school around 3:30, and by the time we got back to the hospital, Jenelle was awake, cranky and crying. Even though the crying wasn't fun, it was nice to see her be somewhat herself. While she was sleeping all the time, we still weren't comfortable that she wasn't having seizures. Once she was awake and cranky and more of herself, we felt it best to take her home.

This morning Jenelle has been awake and bouncing around as normal. She still has a low grade fever of 99, but is more hungry and much more alert. Unfortunately now our "three years since her last hospitalization" streak is over, but at least it was something very minor. As always, when kids who have seizures get sick, their seizure threshold is lowered and seizures can get out of hand very quickly. We were so impressed with the communications between CHOC and UCLA and we're glad she is home and back to some seizure stability.

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

Saturday, November 08, 2008

Please say some prayers for Jenelle's cousin

Jenelle's cousin Kiersten suffers from Hydrocephalus. She is in the PICU at CHOC and has suffered some complications with a shunt revision.

Please keep her, and Brett's Brother's family in your positive thoughts and prayers.

Tuesday, November 04, 2008

For my Mom...

Mom always tells me the only way she gets to see photos of the kids is from this website. Well Mom, here you go! ;)


Monday, November 03, 2008

Infantile Spasms: A Devastating Diagnosis

This is an excellent video that shows the many differnt ways infantile spasms can appear. It also features Jenelle's neurologist, Dr. W. Donald Shields. Please take the time to watch this video, and see how suble these seizures can be.

Saturday, November 01, 2008

November is National Epilepsy Awareness Month!

November is National Epilepsy Awareness Month. People with epilepsy suffer from seizures, stigma and side effects. Parents of children with epilepsy have to endure frightening seizures, and watch as these thieves steal moments of development from their child. It is a hell no one should have to live through.

This year, I want to talk about the parents role in fighting epilepsy. Please take some time to read my previous posts about epilepsy in honor of National Epilepsy Awareness Month, particularly last year's videos.


“As parents it was very difficult emotionally to see Jake struggle with epileptic seizures. On top of that, we struggled to find the right treatment for Jake because of concerns about side effects. We knew we needed to do everything we could to find the right medical advice and a treatment that would work for Jake,” said Grunberg. “My wife and I created Hollywood’s Helping Hands because we felt compelled to raise awareness of epilepsy and help other families going through the same thing.”

~Greg Grunberg, actor

These words from actor Greg Grunberg, who is also a parent familiar with epilepsy, ring true to me. Epilepsy is a frightening, emotional, never ending struggle. Parents go through a range of emotions starting with doubt. "Did my child just have a seizure?", "What if the doctor thinks I'm over-reacting?", "What do we do next if this drug fails?", "What have these seizures taken from my child developmentally?", "Will there ever be a day that I don't think of seizures?"

For young infants and children with epilepsy, the parents are their only warriors. Sometimes the parents need to face their own fears in order to help their child. If you lose the parent, you lose the child. Epilepsy plays hard, and often learning about it is a trial by fire. Every moment lost to seizures, is a moment lost in development. There is no time for fear.

When most people think of epilepsy or seizures, they think of "tonic/clonic seizures" aka "generalized seizures" aka "grand mal seizures." These are the scary ones. Where the child is convulsing, shaking and often screaming or making strange sounds uncontrollably. Witnessing this type of seizure is truly frightening. Unfortunately, most of the general public feel that this is the only type of seizure. I myself thought that long ago when our good friend first suggested Jenelle was having seizures. I would know when I see it, right? Not necessarily.

It usually takes a long time for most individuals and even some doctors to learn to recognize the other seizure types. I am always more than happy to let a nurse or doctor know when Jenelle is having a seizure. And many times, that doctor or nurse will admit they had never seen that type of seizure in person. These difficult to recognize seizures are the most damaging. Especially if a parent is frightened by the stigma of epilepsy, and in deep denial.

There are many seizure types. Some that are subtle and some that are quite obvious. Our Jenelle has had each and every type of seizure there is. From the stares to the convulsions. It took me a long time to recognize the subtle ones. And looking back at her older EEG videos that I am preparing to upload, I see now how they were so obvious. Sadly, some parents are so fearful of the scary seizures, they don't want to acknowledge the possibility of other seizure types. These subtle seizures are silent thieves, stealing precious moments of development. We can't let our fear, and the stigma of epilepsy keep us from fighting for our children, like Greg Grunberg, and us.

Briefly, let's look at the Statistics:

300,000 people have a first convulsion each year.

120,000 of them are under the age of 18.

Between 75,000 and 100,000 of them are children under the age of 5 who have experienced a febrile (fever-caused) seizure.

200,000 new cases of epilepsy are diagnosed each year.

Incidence is highest under the age of 2 and over 65.

45,000 children under the age of 15 develop epilepsy each year.

50 percent of people with new cases of epilepsy will have generalized onset seizures.

Generalized seizures are more common in children under the age of 10; afterwards more than half of all new cases of epilepsy will have partial seizures.

326,000 school children through age 14 have epilepsy.

570,000 persons over the age of 65 have epilepsy.

By 20 years of age, one percent of the population can be expected to have developed epilepsy.

By 75 years of age, three percent of the population can be expected to have been diagnosed with epilepsy, and ten percent will have experienced some type of seizure.

Who is most likely to develop epilepsy?

10 percent of children with mental retardation

10 percent of children with cerebral palsy

50 percent of children with both disabilities

10 percent of Alzheimer patients

22 percent of stroke patients

8.7 percent of children of mothers with epilepsy

2.4 percent of children of fathers with epilepsy

33 percent of people who have had a single, unprovoked seizure

These statistics are very real. As parents we need to educate ourselves about seizures, and we need to advocate and fight for our children passionately. And if these words aren't enough, listen to one of the world's top experts in Pediatric Neurology;

"... early recognition, a careful diagnostic evaluation, and proper treatment may allow some children to attain seizure control and to achieve a normal, or at least much improved, level of development. Thus, there is the opportunity to have an important impact in the lives of these unfortunate children and their families."

~ W. Donald Shields, David Geffen School of Medicine, UCLA, Head of Pediatric Epilepsy Department at UCLA

Taken from Dr. Shields fascinating article on Infantile Spasms entitled, "Infantile Spasms: Little Seizures, Big Consequences" that
can be found in full here.

If you suspect that your child, or a child you know is having seizures, I urge you to seek out the best doctors in your area. For a child, especially a child with development delays or other issues, moments in development are far too precious to waste. Spread the word.