Please excuse my absence... life has been BUSY!

Well, I know that I'm long over due for an update, especially when I log into the blog to type this update and can barely remember my password!  Gee, where did we last leave off?  End of April?  Wow, if you blink things change real quick!  I think to make it easy, I'll give you updates for each of us - Sit tight, this could be a long one!

Jenelle:

Well, since the surprise of our new CP diagnosis, Jenelle has been going through multiple evaluation sessions with California Children's Services (CCS).  The CP diagnosis qualifies her for services, which we hope will become helpful in the future as she needs orthopaedic equipment.  While the areas where Jenelle falls behind are more prominent during such evaluations, I find it useful to review what she is doing and see how far she has come.  We are still waiting on the report from CCS, who finalized the evaluation on July 8.  The medication Dr. Rosenfeld prescribed for her movement issues seems to be helping her mobility.  He decided to continue it at twice the dose and she seems to be doing well.

On July 1, we saw Dr. Shields for our 6 month evaluation.  He was very pleased to hear that her seizures have remained under control while we've been decreasing Felbatol.  I mentioned that just before our visit, we were seeing more Absence seizures so he decided to increase her dose of Onfi to 5mg in the AM, and 10mg in the PM.  In the weeks since making that change, we've seen fewer seizures as a whole, which is always a great thing... which leads me to the next topic... MOVING!

The Move:

We had been renting our last home and we were on a month to month lease after our two year lease had expired.  To our surprise, just before Mother's Day the owner decided to sell and the home had 4 offers in three days - two of which were cash!  Welcome to the real estate market in OC!  Once again we had to scramble to find a single level home in Tustin Unified to accommodate Jenelle's needs.  Luckily, we found a wonderful single level home a mile away, but also in the high school boundary where we want Jack to attend High School.  Prayers answered!  The new home is lovely, bigger and allows Brett to have his own private office for work - something he didn't have before.  This is helpful as Brett seems to work more from home these days... I'll get to that in a moment.

So far we are settled in, and with the stable seizure control Jenelle is doing really well with all the changes.  Her room is bigger so I am keeping some of her toys in her bedroom and in her designated play area in the family room.  There are times Jenelle walks on her own to her room to play by herself.  She seems very comfortable, and very happy.

Oh yes... Brett:

For a few months now, Brett had been experiencing a lot of pain in his neck.  Shortly before the move, he started to notice his arm and left hand getting numb, with tingling sensations.  He decided to get it checked, and what do you know - he needed surgery!  Yep, Brett had a bone spur on his neck that was jamming into a nerve into his spinal column; thus causing nerve damage in his left arm!  Looking back, I wish I had gone with him to the appointment with the orthopedic surgeon.  You see, Brett and Jack are traveling to Cooperstown on August 7 for a week long baseball tournament. Brett is the coach, so when discussing surgery, he wanted to make sure he'd be OK to travel to New York.  "Sure" says the surgeon... 6 week recovery period, you'll be fine to travel.

Well, to say the surgery was uneventful would be an understatement.  It took place 4 days after our move, so to say we were a little stressed is also an understatement.  Remember that Brett was borderline Type II Diabetes?  Well, just prior to surgery, they checked his blood sugar and it was 290... fasting!  It also didn't help that he failed the EKG.  The anesthesiologist really wanted to post pone surgery.  His words, "You look like a fit 44 year old man, but on paper you are an 80 year old woman!"  Great.  After much debate, they went ahead with the surgery.  Brett wanted to be recovered by his trip to NY, or so he thought.  As for the Diabetes, he is on medication right now, but because of the pain medication he needs to take with the neck surgery recovery; his numbers are automatically going to be high.  He will take a baseline fasting blood test this Friday and we'll go from there withour regular doctor.  He is also seeing a cardiologist on Monday to get that checked as well.

As for the surgery - he can feel his hand again, and there is a different kind of pain mostly from surgery, but not like what he had.  Turns out, the surgeon placed 3 screws into the front of his neck to relieve the pressure on the spinal cord, and he is wearing a neck brace and restricted from driving until our next visit in OCTOBER!  Yes, this is why I should have gone initially... to ask these types of questions.  Well, he is doing well, working from home and actually with Jack on summer vacation, it helps that he is home with him.  The only big problem is that he just can't drive.   

Jack:

Jack has had a pretty good year so far, and thankfully even though we moved to a new school boundary, he will get to stay at Utt Middle School for 7th and 8th grade.  He really didn't like the idea of changing to a new school with the move, and for a moment he looked like he was going to have to move to a new school, but thankfully it all worked out.  What middle-schooler would want additional angst in changing schools?

Jack finished his last year of Little League and although he was voted onto the All Star team, Williamsport wouldn't approve his playing with the All Star Team at our new league.  He was asked to practice with the All Star team and we supported them at every game.  I can't believe the Little League days are behind us with Jack, and that he will be starting high school in two years.  He is growing into an amazing young man, and really, really loves his little sister.  I couldn't be more proud of him.

ME:

Well, if you recall, I went off the "happy pills" back in August.  Well, the depression creeped back and hit me pretty hard in April and May.  During this time I was also suffering from a lot of sciatic back pain, and of course the stress of the impending move.  I finally bit the bullet and realized that my life is not normal, and that given all the stressors I have in life, anti-depressants are going to be a necessity.  I had my 6 week follow up with the doctor last week, to see if the dose was appropriate.  As I sat there and told the doctor with a laugh and smile about our recent move, Brett's surgery, my being the family taxi driver, and God knows what else; she smiled and said "If you can sit there and laugh and smile about all this, the pills are working - I've sent in your re-fill!"

People always say that I share so much of our lives here at this blog, when in actuality... it's not even half of what is really going on in our lives.  I do realize the world is reading, and I do hold back lots of personal things.  However, I am willing to share issues like my depression because I know for fact, from comments and e-mails, that many of you are in similar situations.  Just knowing someone else is going through something similar can help.  I hope I am that hope for anyone in the same position.

And finally... while I am still cancer free, I've had some issues of concern that led me back to one more visit with Dr. Territo before her official retirement.  With the back pain came new bruising and fatigue.  I have been bruising in random places like behind my elbow, and on my chest, etc.  Well, having survived blood cancer once, I don't take these symptoms lightly.  UCLA agreed and got me in for a follow up very quickly.  They ran some blood work and found that I am having some clotting issues (Iron Binding Capacity, Ferrtin and possible DIC).  Now, this could be related to lots of things like all the pain killers and Aleve I had been taking for my back pain; or it could simply be how my body is reacting post-chemo/post cancer.  I have a follow up in August and we'll know more then.  For now, don't worry unless you have something to worry about! ;)

PHOTOS:

As a bonus for not updating in a while, here are some photos for you to enjoy! Thank you as always for the positive thoughts and continued prayers. I'll keep you posted - I promise!

Here I am with the doctor that saved my life - Dr. Mary Territo at UCLA. She officially retired as of July 1, 2013~  I will follow up with a new oncologist in August. And yes, I am holding a kleenex because I broke into tears when she told me she was retiring!

Brett and Jack after Jack's last official Little League game.

 

Jenelle on 4th of July.  Sitting so pretty and tall.

 

Jack on 4th of July.
 

Me and Brett (with his neck brace) on 4th of July.

 

Brett's neck after surgery. (He's taller too!)

 

Brett's first trip out to dinner after surgery.

Slider our cat enjoying the new back patio.

Jenelle bowling with cousin Alison.

Jenelle with her YMCA Aide Geri and a snake!

(This blog update took me 4 days to compose!)



Orthopedic Evaulation

Jenelle had an appointment this afternoon with a new orthopedic doctor.  We were referred to Dr. Rosenfeld at CHOC because Jenelle's last Scoliosis x-ray showed a slight curve, and of course, we've been dealing with her para paresis (left leg shorter than the right).  If you recall, Jenelle was diagnosed with this last July when we realized her leg was an inch shorter, and foot a shoe size smaller.  At the time, she was fitted with an ankle brace to keep her longer leg from pulling inward, and a lift in the other shoe to help her balance out.  Unfortunately, we lost the lift a few months ago, but Jenelle has been managing well without it.  Also, Jenelle has had quite a growth spurt since the new year, and I was thinking her legs have finally caught up - it appears I was right!

Jenelle has never been followed by an orthopedic doctor and I was pleased to finally get some answers today.  The new doctor said that Jenelle's legs are now even, but her left foot is still a bit smaller.  That can happen to anyone really.  We had a new x-ray today to compare to the last one took in August, and as it turns out her back is straight and fine.  Of course, because of her issues, we will want to keep an eye out for future scoliosis, but for now she is fine.

And now, for the unexpected ... Jenelle has a new diagnosis!  Or really, not new, as she has probably had it since birth.  Dr. Rosenfeld says that Jenelle has Cerebral Palsy.  Now, I know lots of special needs kids that have CP, and Jenelle does not seem to have the spastic problems I see in these other kids.  Well apparently, there is not just one type of CP.

"Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three^.  Resulting limits in movement and posture cause activity limitation and are often accompanied by disturbances of sensation, depth perception, and other sight-based perceptual problems, communication ability; impairments can also be found in cognition, and epilepsy is found in about one-third of cases."        

Now, Jenelle has never had an official diagnosis - i.e. we do not know what causes her seizures.  We've determined her seizure type (Lennox Gastaut Syndrome), and that her brain in normal on MRIs - but no "official" underlying cause.  CP is not the cause of her epilepsy, but the way CP affects her movements and muscle coordination, could be caused by whatever happened during pregnancy, birth or after.  The good news - her CP will never get worse than it already it.  The better news, a CP diagnosis will finally get Jenelle services from California Children's Services (CCS) which will help us with equipment expenses in the future, if needed.  Dr. Rosenfeld had me complete the CCS application and said he would submit it on her behalf.  All good news.  Dr. Rosenfeld wants to start Jenelle on a very small does of Trihexyphenidyl.  This drug is used to help muscle coordination and might be helpful to Jenelle in allowing her to have better control of her muscles.  We will see him again next month to follow up.

In other news, the wean off Felbatol is going really, really well (knock on wood) and Jenelle has had very few seizures if any in recent days.  We're just about to end our baseball season with her Challenger Team, and making decisions about her school placement next fall.

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

Life is moving right along...

I'm sorry to leave you all hanging.  2013 seems to be keeping pace with 2012, and moving all too quickly.  Here we are in the beginning of March.  Jenelle is doing very well health wise, and very, very well with the Felbatol wean (knock on wood!)  We honestly haven't seen any seizures since Winter break when she was fighting the flu.  It's so wonderful to have some seizures control again.

We have encountered some compliance issues with our School District regarding Jenelle's IEP and program placement.  We have an IEP meeting on March 21.  I truly will never understand why a school district would drop the ball and drag their feet in providing appropriate services for a special needs child as complex as Jenelle.  You can be certain that I've channeled my inner "momma bear" so that I can fight the good fight for Jenelle.  Until the matter is resolved, I will not mention specifics here.  Your prayers of support would be most appreciated. 

In other news, because Jack has moved to a new league to finish his last season at Tustin Western Little League; Brett and I have started a new Challenger Division baseball team there as well.  Opening Day was last Saturday, and we had our second game yesterday.  We have mostly new players to the program registered with this team, and lots of enthusiasm from a very supportive league who is hosting the team at no cost to the special needs families.  Being a part of the Challenger League has always taught me that kids struggle in different ways.  It's wonderful to see them so excited to be a part of a team, and to get to play baseball.  Here are some photos from yesterday's game.

Jenelle enjoying lunch after her game.

JD being Buddy to his friend Lincoln.

That is all for now.  Thank you for the continued positive thought and prayers - please keep them coming for our IEP on March.  I'll keep you posted!

Happy New Year! Latest follow up at UCLA

Happy New Year!

We had a lovely Christmas and New Year's Holiday.  Jenelle really enjoyed playing with new toys and just cuddling with family.  I share photos from the holidays at a later time.

Jenelle had a follow up appointment at UCLA today with Dr. Shields.  He was pleased with our report that her seizures have been under control with Onfi.  I told Dr. Shields about Jenelle small regression on goals from her chaotic seizures earlier this year and that I wanted to give her some more time to catch up.  He agreed that it is good to have the seizures under control, and thinks it's time to see if we can wean her off one of her medications.  I felt that when we tried to wean from Vimpat earlier this year, it made her seizures worse, so we both agreed that Felbatol is the medication we should try to wean.  Felbatol has the worst side effects with potential damage to her liver and other organs, and she's been on it the longest.  Dr. Shields also feels it is important to get off Felbatol before she officially starts puberty.  So, we are going to slowly, very slowly start to decrease her Felbatol to see if we can lower the dose and maintain seizure consistency.

Everything else was good for Jenelle - she weighs 68 pounds and is 53 inches tall.  When Dr. Shields walked into the room, Jenelle reached her hand out for his.  It was very sweet.

9 minute Absence Seizure

You know me and my superstitions.  I hadn't mentioned it, but was about to say something.  That Jenelle was having a really good no-seizure streak.  Oh well, it was a good run.  Until Saturday, Jenelle had been doing relatively well with Onfi.  The absence seizures we were seeing had settled down a bit, and no more grand mals!  None since starting Onfi!  All of this great seizure control since early August - it was quite a streak if I say so myself.  But all the knocking on wood is really just superstition, and if she's going to have a seizure, she's going to have a seizure.

This weekend, Jack's travel ball team had it's first tournament of the new season in Fountain Valley.  Grandma was watching Jenelle as I was keeping score - they were walking around behind the back stops.  We were at one of those multi-field places where three back stops back up to each other, and there was a game going on at the field behind ours.  All of a sudden, I saw Grandma violently fall to the ground.  Instinctively thought she was hit by a foul ball, and dropped everything to get to her.  It was then I realized that it wasn't a baseball at all, but Jenelle had fallen to the ground due to a "drop seizure" and took Grandma to the ground as well. 

Two gentlemen friends of ours ran to help me with both Grandma and Jenelle.  Grandma was OK, but with her history of back and knee pain I knew she was going to hurt later because the fall was pretty hard.  We helped Jenelle stand up, and she remained quiet for quite a while.  It was then that I realized she was in an absence seizure.  With Jenelle, there is always a delayed reaction, and Grandma said Jenelle hit her head pretty hard when she fell.  As we waited for some sort of reaction for Jenelle, I realized we needed to start timing the seizure.  Two minutes had already passed.  Absence seizures are very tricky to spot, this because often times the patient seems to be somewhat alert.  Jenelle was smacking her lips, chewing, and blinking here eyes while looking around.  Definite obvious signs of an absence seizure.  I confirmed it was a seizure by holding her hand and arm; you could almost feel the electricity pulsating in her.  When the timer on my phone reached 4 minutes, we moved her to the grass.  After 5 minutes, Jenelle was still not seizing so I gave her Diastat.

Unlike her usually response, Jenelle did not immediately come out of her seizure after the Diastat.  One of the parents on our travel ball team is a doctor, so I asked for him to help me track her heart rate and breathing.  Luckily, she did real well with the Diastat, and her heart rate did not drop.  Having a doctor nearby was easier than having to call 911.  Just as we approached the 9 minute mark, and me thinking she needed a second dose of Diastat, Jenelle finally came out of it, and acted as if all was normal. 

I watched over her closely the rest of the evening, and later Jenelle was giggly and acting very normal.  We were worried with her hitting her head, but other than the seizure she showed no signs of any concussion.  The other good news is that after the Diastat, we didn't seem to have any follow up/cluster seizures.  Once again, Diastat saved the day, and a trip to the ER.  Thankfully the doctor parent on our team saved us a 911 call as well!  I'm still not sure if it was a drop seizure, that went into an absence seizure because of the hit to the head, or if it was one long seizure.  Regardless, it wasn't as bad as it could have been.  OH, and Grandma is very, very sore - poor Grandma!

Thank you for continued prayers - as always, I'll keep you posted!

November is 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 about seizures, and what to do during a seizure emergency.  Usually, I get this post up on November 1, however this year with Halloween, the election and so many other things going on in our lives, I decided to post-pone my usual Epilepsy Awareness post to the middle of the month, because after all, November is 30 days long! ;)

This year, I want to talk about Sudden Unexplained Death in Epilepsy, also known by the acronym SUDEP.  SUDEP is “the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with epilepsy with or without evidence of a seizure, excluding documented status epilepticus, and in whom post-mortem examination does not reveal a structural or toxicological cause for death.”  In other words, an "unexplained death in someone who has Epilepsy."

I mention a lot on this blog about how we've been told that Jenelle has a short life expectancy, but I don't think I talk much about why that is... for obvious reasons I hope.  Death is not a topic that we like to discuss, let alone the possible death of one's own child.  This week, I have been struggling a lot with the recent death of a friend, with Jenelle's mortality and my own.  I felt this topic was very fitting this year. 

My friend Enid was diagnosed with breast cancer six months after my initial diagnosis with AML four years ago.  She fought hard and we mutually inspired each other in our fight.  She went into remission, but a year later her cancer returned.  She died last Saturday leaving a husband, and three young children; and here I am poised to celebrate my 4th year in remission in December.   All the questions I have, and all the "what ifs" and that could be me - Survivor's guilt is a bitch.

The night I learned of Enid's passing, I had a rough time sleeping.  All I could think about was losing Jenelle.  I mention it many times, Jenelle has doubled her life expectancy.  She is, however, very medically fragile - and though I understand all of the consequences, and "what ifs", I can't imagine how I'm going to function when she's gone.  I talked to Brett about it, and he made me laugh of course,

"Well, you are finally catching up!  I embraced that thought a long time ago and realized there is nothing I can do about it.  She's going to go when it's her time, it's going to be quick, and all I can do is hug her each day, tell her I love her, and enjoy her while she's here." 

I see it that way too; I know every day with Jenelle is a gift.  However, as she gets older, we are entering unknown territory with Jenelle, and when friends you hope will survive against all odds die, you just feel a little less secure in your optimism.

This is what is feels like to know you have a medically fragile child.  To realize that she will have a "sudden, unexplained death because of her epilepsy."  Patients like Jenelle with Lennox Gastaut have a high rate of morbidity due to "accidents"; in that I'm reminded of her accident falling into our neighbor's pool more than a year ago.  Accidental death can occur during a seizure if the patient has a fall when seizing, or an accident driving a car when a seizure occurs (assuming the patient is driving), or drowning due to swimming when a seizure occurs, etc.  One of the biggest concerns for Jenelle is Status Epilepticus - or constant seizure state, which can in rare cases can end in death.  It seems like a lot of this can be prevented with common sense really, but like we realized after Jenelle's fall into our neighbors pool, anything can happen.

The strongest weapon we have against death in epilepsy, is advocacy and education.  Educate yourself on what to do during a seizure, and educate yourself on what to look for.  Know the recommended first aid response.  Advocacy is key in helping others know what to do and what to expect. When you know what to expect and what to do, it isn't as scary as it sounds.

Since Jenelle's initial LGS diagnosis in 2005, the Internet seems to have blossomed with new information.  Here are some wonderful and informative new links that I found in researching this post, and that I will add to our side bar of links.

LGS Foundation
About LGS (this site sponsored by the drug Onfi, which Jenelle started taking in July)
Epilepsy dot com


 Remember to wear your Purple this month and remember to talk about Epilepsy Awareness!

Free from the Happy Pills!

In early August, I decided to wean myself off my anti-depressants.  Today, I am happy to report that I have been completely off the Happy Pills for a whole month - and finally I feel normal again.  Later this month will be 4 years from my cancer diagnosis.  In December, I will be 4 years in remission - one year away from the title of being "cured."  It's been a wild ride and a long road.

Obviously, I'm not anti-drugs by any means.  I used them briefly when Jenelle was going through the worst of her seizures, and it helped keep me focused.  I remember clearly the day my doctors put me on the anti-depressants with my cancer diagnosis.  It was three and a half years ago, February 2009, and I was quickly spinning into a deep depression.  I was in the hospital in Santa Monica because I had no immune system (0 neutrophils) after my second round of chemo.  I felt completely fine and wanted desperately out of the place.  I was so desperate, there was a morning where I sat on my hospital bed, bags packed, in street clothes ready for the onslaught of doctors with their entourage of medical student that would eventually arrive at my door to tell me my numbers.  I was determined to discharge myself against doctors orders if the numbers hadn't improved, and take a bus home if I had to. 

Upon entering the room, the doctor told me that his students had to literally push him through my my door.  The entire team knew that they were about to deliver news I did want to hear.  That I still had 0 neutrophils, and that I wasn't going anywhere.  I remember that feeling of disappointment; I cried hysterically and wanted desperately for there to be some way that I could go home to Brett and the kids.  So I could sleep in my own bed, and feel normal and comfortable once more.  After the bad news was delivered, they left me alone with a blond nurse (whose name I cannot remember) who stayed by my side all day, stoked my hair, helped me unpack and just let me sob.  I was literally on suicide watch, with doctors, nurses and staff checking in on me every hour.  I didn't realize it at the time, but the cancer and the chemo had sent me spiraling very quickly into depression.  The next day, an anti-depressant was added to my daily drug regime and when I was finally released 4 days later (14 days total), I realized that the pills were just as important as the chemo in helping me survive the cancer. 

This summer, I knew I was ready to wean off the drugs.  I'm always happy and optimistic, so I knew that wasn't drug induced; however this summer I realized I hadn't been showing or really feeling any emotions.  And I'm talking the good emotions like laughing so hard that you cry, or getting a lump in your throat with pride for something your child has done.  Having had experience with weaning Jenelle on and off medications, I had a good idea what to expect when I started the wean.  For my close family, friends and co-workers; you know the last few weeks have been quite an emotional journey!  I knew it was my brain, and hormones sometimes over-reacting to tiny situations that on the happy pills wouldn't normally bother me.  I was fully aware that my brain chemistry levels were slowly getting back to normal. 

About three weeks ago, I would categorize my emotions as "bat shit crazy!"  I had road rage, and snapped at every little scenario that sounded the slightest bit confrontational, and I was just a raging hormonal mess.  It was quite a journey.   But I survived, and today marks one month that I am completely anti-depressant free - it feels fantastic!  I have real emotions again, even moments when I have a good cry!  I'm still happy, optimistic, sarcastic and finding humor in everyday life.  Only one more year until I'm officially cured... and I'm really starting to believe that will soon be a reality!

~~~~~~~

A few weeks before Jenelle's 10th birthday, Jack asked me if I ever imagined that she would be 10 years old.  In all honesty... yes.  I imagined a 10 year old Jenelle.  And I can imagine a 16 year old Jenelle, and a 20 year old Jenelle.  Doctors tend to tell you the worst to prepare you for the fight ahead when really no one knows the end result for sure.

Jenelle's life with us has been an amazing gift that has changed our lives in so many ways.  We see the positive in every situation, we are compassionate, and we realize the miracle we have been so blessed to share with the world.

15 years ago today, Brett asked me to marry him.  On that day, neither of us imagined the challenges that would be thrown our way - but we have survived together.  What a wild ride it's been!