The Websters

When Grace was initial diagnosed, the information on HH was limited and when you did an internet search on hypothalamic hamartomas it returned less than 10 results.  We had been told the condition was rare, but it wasn’t until we began our search for answers did reality hit us.

I’m happy to announce that we’ve officially launched a nonprofit specifically for HH.  Below are the details from our release announcement.

We are pleased to announce the launch of  Hope for Hypothalamic Hamartomas (Hope for HH), a 501©3 non-profit organization and website  (www.hopeforhh.org) dedicated to providing information, support, and research data to individuals with hypothalamic hamartomas (HH).

Hope for HH was founded by Lisa Soeby, Ilene Miller, Dawn Cerven, and Erica Webster - 4 dedicated parents of children with HH.  Collectively, we bring professional expertise in business, non-profit management, website design, and social services.  We also have the support and blessing of an international community of HH doctors and researchers and will be adding a Medical Advisory Board to our organization later this year.  Hope for HH will provide:

*Information about HH symptoms, diagnosis, treatments, and specialized centers;
*Tips for living with HH, and education resources;
*HH research updates and articles, books, news stories, helpful links; and
*Interactive forum for HH patients, caregivers, and healthcare providers to dialogue
As HH parents and caregivers, we hope you will VISIT THE WEBSITE, PARTICIPATE ON THE FORUMS, JOIN US AS AN ACTIVE MEMBER OF THIS COMMUNITY, SPREAD THE WORD ABOUT THIS RESOURCE, and MAKE A DONATION. Mostly, we hope you will help us DRIVE and DIRECT this organization to be the best possible resource for our community.

We are forever grateful to the many families that have given so much to see that the concerns of this community have been heard in the past.  Through their tireless efforts, and the incredible dedication of many doctors that have heard our pleas - there have been many amazing advancements in treatment options and the understanding of the complex nature of our kids.  It is our hope that TOGETHER we can continue to make a difference for our family members living with HH and those yet to be diagnosed.

Perry and I are so appreciative for all the support over the past 5 years.  Your support truly helped give us the strength to get Grace through all the ups and downs associated with HH.

As many of you know, Grace had been seizure and rage free for nearly 2 years after her brain surgery, but unfortunately in August 2009 she began to experience episodes which appears to be morphed forms of the pre-surgery gelastic seizures and rage issues.  No one really knows what the future holds for Grace or any of the other HH kids, but our hope is with this new nonprofit we can make a difference in the life of all HH children, including our Grace.

Thanks so much and we hope you visit the website (www.hopeforhh.org).
With Love,

Erica and Perry

We just wanted to send you a personal note to thank you very much for your donation to Wings of Angels.  This year’s annual bowl-a-thon raised approx. $22,000 to help the families of children w/ life threatening illnesses that require travel for their treatment. With your donation, and others like yours, Team Webster collected over $4,400 and helped surpass last year’s total.

Thank you very much.  It means even more this year during these tough economic times.

It is that time of year again for the Alyssa Araiza Wings of Angels Bowl-A-Thon.

This year they will be helping the parents of eight year old Logan Thompson who has been diagnosed with Burkitt’s Lymphoma.   Logan has been hospitalized at Sutter Memorial in Sacramento since his diagnosis in November of last year. His parents are currently living in a motor home in the hospital parking lot so they can be near their son.   For those of you on Facebook, there is a page dedicate to support Logan and his family through his treatment.  Facebook Page

Please help us help them by donating. Last year the Webster Team collected over $2,300. Please help us meet or surpass that amount.  All donations are tax deductible.

You can send a check to us made out to “Alyssa Araiza Wings of Angels Organization” at:

18962 River Ranch Road

Anderson, Ca 96007

Or donate online for Team Webster. They take PayPal or credit cards.

http://www.alyssaswingsofangels.org/donations.html

It is that time of year again for the Alyssa Araiza Wings of Angels Bowl-A-Thon. This yearly event is their primary fundraiser so they can continue to assist, currently 24, families with children with cancer or serious illness who are required to travel from the Redding area for treatment. They have assisted by paying utility bills, paying rent, buying new tires, bus tickets, vehicle repairs, memorial donations, scholarships, the purchase of two vehicles, an annual Christmas party, and more. Every year they give additional assistance to one or two families.

This year they will be helping the parents of eight year old Logan Thompson who has been diagnosed with Burkitt’s Lymphoma.   Logan has been hospitalized at Sutter Memorial in Sacramento since his diagnosis in November of last year. His parents are currently living in a motor home in the hospital parking lot so they can be near their son.   For those of you on Facebook, there is a page dedicate to support Logan and his family through his treatment.  Facebook Page

Please help us help them by donating. Last year the Webster Team collected over $2,300. Please help us meet or surpass that amount.  All donations are tax deductible.

You can send a check to us made out to “Alyssa Araiza Wings of Angels Organization” at:

18962 River Ranch Road

Anderson, Ca 96007

Or donate online for Team Webster. They take PayPal or credit cards.

http://www.alyssaswingsofangels.org/donations.html

It took a bit longer than we had hoped, but we’ve received Grace’s VEEG results. After 50+ hrs of being hooked up and us witnessing over 12 *episodes*, the EEG is inconclusive.

The good news is no seizures showed up on the EEG, the bad news is no seizures showed up on the EEG.

No seizures showing up means Grace is not having the complex partial seizures that she had pre-op. This is truly fantastic news, but unfortunately both our local doctor and the neurologist in Phoenix did see the *episodes* while watching the video images. The problem is there was no corresponding seizure activity captured, so as a result the VEEG as a whole is inconclusive. These episodes could be caused by many things, including seizure activity (too deep in the brain to register on the EEG), hypothalamic rages, or a result of the traumatic brain injury as a result of the invasive surgery.

It’s almost as we are back to those initial days after Grace was diagnosed when we were trying to make sense of it all. Once again we don’t have a clear understanding of what is causing these *episodes*. I truly believe Grace has started to have gelastic seizures, but they’ve changed from what we typically saw pre-op. She now simply has moments she ‘checks out’ for a minute or 2 and then is very disoriented afterwards. She’s also having the more aggressive outbursts which bring back memories of the rage attacks.

Grace is now back on Keppra. She’s actually taking more than she did pre-op and it seems to be controlling almost all of the rage episodes, however, she continues to have the other type of episodes when she ‘checks out’. We are hoping right now that the Keppra continues to work, but realize based on our previous experience that we’ll probably have to modify meds at some point.

Tomorrow, we leave for Sacramento so Grace can have the Supprelin Implant put in on Thursday morning. This will eliminate the monthly Lupron injections, which causes Grace so much anxiety and days of leg pain. We have also noticed that Grace has more *episodes” right before and after her injection.  We think this is due to shifts in her hormonal balance. The implant should reduce hormonal mood swings associated with the Lupron injection and subsequently we are hoping that Grace will no longer have the increase in episodes she’d experience every 28 days. The procedure is fairly quick but Grace will be sedated. Please keep her in your prayers.

Grace has been doing much better since she’s been back on her anti-seizure medication.  The episodes/explosions of anger are very seldom and it’s making school and home much more enjoyable for her.   We do continue to see what seems to be involuntary actions/movements and are not sure what is causing them, but feel they could be related to the potential seizure activity.

We were lucky to get video EEG scheduled fairly quickly with Grace’s neurologist and will be heading to Sacramento tomorrow afternoon.

Our appointment is on Wednesday morning and will take 1-2hrs to get Grace all hooked up with the EEG.  The good news is she won’t be admitted to the hospital.  The neurologist has order an ambulatory video EEG which is completely portable.  Grace will be hooked up to the EEG and have a little backpack to carry around and Perry and I will have a separate bag which holds the video camera.  Needless to say we’re happy to know we won’t be spending the 3 days in a hospital room and instead get to spend it with Grace’s Aunt Renee.

Although the doctor has order 3 days, we’re not sure Grace will tolerate being hooked up that long and we are simply hoping she’ll keep it on long enough for good data to be gathered.

And for those of you that miss our daily updates on sodium, you’ll be happy to know were including a special section of this post just for old times sake.  This past Wednesday Grace came down with the first of the school flus that was going around and as always we’re always worried when this happens because keeping an accurate record of her fluid ins and outs is critical for ensuring her sodium levels stay in range.  Unfortunately, this past week something went out of whack.  She never had dumping sessions on Wednesday, Thursday or Friday and when we weighed her Friday night we found that she had gained 4lbs even though her in/out ratio seemed to be okay.  We called the endocrinologist and he wanted us to get her levels check as soon as possible.  We called the on-call pediatrician and he said we’d need to be admitted to the hospital as it had the only lab that could process the blood work STAT.  So Friday night we headed to the hospital and Grace had blood drawn.  I guess the good news is her number was 145 and for those of you that remember our weeks and months of sodium level posts you might remember the normal range is 135 - 145.  That means Grace was actually perfectly in range and once AGAIN the sodium levels baffle us and her doctors.  When we talked to the endocrinologist later that night he said, what so many have told us before, this number doesn’t make sense considering all the other information (fluids in, out, weight gain).  He stressed that unless she started to dump fluids by Sunday he wanted us to drive to Sacramento and have her admitted to the hospital so he could monitor her.  I’m happy to say by Saturday night she started to dump and has been back to normal dosages of DDAVP over the past couple of days.  As always, once we think we’ve figured out this DI issue it smacks us in the face just to let us know who is in control.

Thanks everyone for all the supportive comments and emails you’ve been sending!

It has been awhile since our last update and with the recent events we wanted to make sure all of you knew what was going on with our little Grace.

We had weaned her off 1 of her 2 anti-seizure meds last November and it went extremely well. We decided to wait a couple of months and then began to wean her slowly off the last anti-seizure medication in late December of last year. By June she was down from 3.5ml 2x per day to 1.5ml 2x per day when we began to an increase in Grace acting out and subsequent “timeouts”. At the time we accounted this behavior to the fact that less meds in her system were allowing her to feel the full extent of emotions which she’s really never had the opportunity to feel before or after surgery. Prior to surgery these extreme emotions (happiness, stress, startling, anger) would typically result in a seizure and since the HH was removed and not acting as a catalyst for the gelastic seizures and subsequent partial complex seizures the anti-seizure meds have been helping Grace control her emotions and keep them within ‘normal’ range.

We chalked these new episodes to normal behavioral issues children go through growing up but that Grace never experienced because of all the past seizure activity.

In mid-July we completely eliminated the anti-seizure medication and things got completely out of control. Grace was having aggressive and violent outburst. She was constantly trying to strike anyone near her or throw items. Meal time was especially difficult. Once she finished her meal she would try to knock everything off the table to floor. These episodes would escalate to the point timeouts were no longer working and when Grace was sent to her room she’d do her best to completely destroy it by pulling out the drawers in the dresser, knocking things off the shelves, etc. About 1.5 weeks into this we called the neurologist and asked if this change in her personality could be the result of having withdrawals from the anti-seizure med. He said it wasn’t a withdrawal issue, but more likely sub-clinical seizures or behavioral issues. He agreed we should put her back on the med and see if things improved. Within 2 days things were dramatically better. Grace was still having these episodes, but they were much more controllable and no longer escalated beyond the point of return.

Grace started kindergarten on August 17^th. The week leading up to the first day we had a meeting with her IEP team at the school and let them know about the aggression we were seeing in Grace. We wanted to make sure everyone was on the same page and we had a plan for addressing any issues that might happen while she was at school. Of course, everyone was hoping Grace wouldn’t show any of these behaviors at school, but the first day of school proved us all wrong. She had several of these episodes which involved hitting, aides and classmates. That night I talked with a past teacher of Grace’s who had observed her during the school day and had been on the receiving end of her attacks. The teacher told me what she witnessed was not behavioral issues and that Grace was not in control. She said it looked very familiar to epileptic episodes of rage she’s seen before. After talking with the teacher I immediately called the neurologist and told him what had happened. He said it definitely sounds like there could be seizure activity going on and told us to put her back to the full dosage of the anti-seizure medication and plan on coming down to Sacramento for a 3 day 24hr video EEG in attempt to verify what Grace is experiencing and to ensure the medications she’s taking are correct. The good news is the increase of meds has definitely helped. It hasn’t completely eliminated the episodes, but as Grace’s teachers have said it’s like night and day from the first day of school.

We have come to believe that these episodes are 20% behavioral and 80% some form of seizure or rage attack like she had prior to surgery. They come on, usually, w/o warning. This seems to leave her very confused, sad and crying. The house has been walking on eggshells not knowing when she will go off. This is definitely not our sweet little Grace and we’re very anxious to find out what is going on and how we can help her.

This has been a very hard update to write since our news is not good news. We knew there were no guarantees for a completely seizure free life after surgery, so we’re doing our best to take each day as it comes.

Please keep our Grace in your prayers and we will post another update when we have some more news.

It’s so hard to believe, but it’s true!  Grace is officially 2 years post op and continues to be seizure free.  This is a huge milestone for her and moves us much closer to our hopes that she’ll be seizure free for the rest of her life.  We wanted to share this celebration with all of you that have been there supporting Perry and I and praying for Grace throughout her journey.

We weren’t sure what to post but I thought it might be interesting to look back at the day of her surgery  by reviewing some of the first Care Page post and see how far she’s come just 2 years afterward.

April 20th, 2007 - The day of surgery

1st post from April 20th:

We had an early start this morning. Check-in was at 5am and amazingly we
were early (combination of 2 alarms, 1 wake-up call). We met at 7am with
the anesthesiologist and at 8am Grace was taken back to the Interoperative
operating room to be prepped for the MRI and then for surgery.

Actual surgery got started at 11:00am and at 1:30pm we got an update that
tumor removal had started. We’ll be getting another updated in 2hrs. At
that time we are expecting them to do another MRI and then we’ll have to
wait until the doctor can review and determine if he goes back for more or
has gotten at much as he safely can.

Internet access isn’t as readily available as we had hoped, but will
continue to post updates as we can.

Perry and I want to thank everyone for all the support provided in the
months leading up to this day and for the prayers you’re continuing to do
for Grace today.

2nd post from April 20th:

We got another update at 2:30pm. Dr.Rekate came out to let us know he was
finished with the initial phase. He said everything so far was going great
and Grace would be going in for another MRI. He’ll then review the results
to determine if he will go in and try to get more of the tumor or close
up. We should know in another 1.5hrs or so.

3rd post from April 20th:

We just saw Dr. Rekate and the secondary MRI is indicating 90-95%
resection of the tumor. He mentioned multiple times the surgery had gone
better than expected, but also stated the next several days would be
critical.

Grace’s surgery also involved Dr.Spetzler the Head of Neurosurgery which,
according to Dr. Rekate, assisted with several difficult areas near blood
vessels. We were also able to speak with Dr.Spetzler separately. His
assessment of the procedure was as optimistic as Dr. Rekate’s but also
restated the next few days will be critical.

We are so happy surgery went so well, but now we move on to the initial
recovery. Grace was under for more than 8hrs, so they are expecting her to
be asleep for majority of the next several days and we won’t know the
success of the surgery until she wakes. At that point we’ll need to watch
for seizures and if she suffered any complications from surgery.

She’s currently in recovery and hopefully we will be able to see her soon.
She will hopefully be moved to PICU in the next two hours. We’ll post more
once she’s settled in.

Please continue to keep Grace in your prayers as the next several days
will be very critical for her recovery.

(Sarah is doing great on this trip but is missing here sister very much
and a little out of sorts being away from home. Hopefully we will be able
to see her tomorrow)

April 20th, 2009 - 2 yrs post-op!!!

April 20th, 2007 was the longest and most stressful days Perry and I have undergone.  As you all know the stress and worry didn’t end that day.  Grace spent more than 60 days in the hospitals and neuro-rehab.  The magnitude of the difficulties she faced during recovery was nothing we had prepared for and truly stumped the medical teams.  But she made it through and continues to amaze us with her ability to meet the daily challenges with a smile for her family, therapist, teachers and school mates.

Several of the medical staff still read our updates and to them we’d like to say thank you again for everything you did for Grace.  I won’t identify you by name, but you know who you are! 

Here are two photos 1 day after surgery.   Looking back at these brings back so many memories and reminds us at how little and young she was at the time of the surgery.

I recently took this photo of Grace and think it really is a great example of how far she’s come since being released from the hospital.  When she came home in June 2007 after those 60 plus days in the hospital, she could stand or walk for more than 10 minutes at a time, now she’s standing on one foot and kicking the other one out to the side.  Simply amazing!!