Thursday, October 21, 2021

Choices and Changes and Birthdays!

 A lot has been going on with our girl, so I thought it was time for an update... and just in time for her 19th Birthday tomorow!

In my last update, Jenelle had a UTI.  That resolved quickly, thankfully, and the rest of the summer went by without issues.  Big Brother Jack moved back to campus and football camp at the University of LaVerne and Jenelle started back to school in person at Tustin High School in the Adult Transition Program.  I am now working back in my office in Newport Beach and Brett is thrilled to have his "home office" to himself again. 

I didn't mention it in my last two updates, because it was not my news to share, but our beloved neurologist at CHOC, Dr. Lily Tran, made a huge life changing decision to move her family back to the East Coast where they had family and friends.  Those of you in Delaware who have the ability to go to Nemours Children's Hospital, and who are looking for an Epileptologist ... run see Dr. Tran.  She is amazing and is an absolute Rock Star!  She is making positive changes in the world of Neurology and we miss her dearly.  When Dr. Tran left, we transferred Jenelle's care to Dr. Maija Steenari at CHOC (same group, same hospital).  Dr. Steenari was a member of Jenelle's neurology team at CHOC and has seen her in hospital many times so we expect the transition to be seemless.

Prior to Dr. Tran leaving, we learned that Jenelle needed a replacement VNS as the battery was dying.  Something we didn't share was that for many months, Brett and I have been trying to make a decision about Corpus Callostomy surgery to help stop Jenelle's "drop" seizures.  Dr. Tran suggested it and we met a couple of times (on Zoom) with Dr. Tran and Jenelle's neurosurgeon Dr. Goffry Olaya.  The procedure that was being recommended was different than your typical "Brain Surgery" - Dr. Olaya has been performing a Corpus Callostomy (CC for short) on patients now using a laser and burr holes, rather than opening up the skull.  Think of it as a "laporoscopy" procedure - like taking out the appendix with a laser instead of opening you up.  Less side effects, less time in the hospital for recovery.  The only down side was Covid... and only one parent could stay in the hospital with the patient at that time.  AND, at the time we started discussing it, Dr. Olaya had only performed one other surgery like this at CHOC.  Brett and I have always felt that Brain Surgery for seizures was our "last option."  When all other drugs have failed.  And Jenelle has failed many, many different drugs - including Epidiolex (medical marijuana.)

It is a huge decision.  Brett and I change our minds daily - wanting to schedule it and then wanting to wait.  There are and were lots of things to consider in deciding on elective surgery ... in a pandemic ... and we still have not agreed to it.  Then we had our first meeting with Dr. Steenari.  We discussed all of Jenelle's medications and explained our apprehension to surgery.  Dr. Steenari agreed that it was a lot to consider... and the good news (maybe) is there are two more drugs we've yet to try.  So right now, the decision for CC Brain Surgery has been "tabled" and we have started Jenelle on Fintelpa.

So, remember a couple of years prior to the Pandemic?  We were trying to get Jenelle OFF Risperdol and into a drug trial for a drug that was similar to the diet drug Fen Fen?  This Drug had promising research results in Europe where 95% of teenage females with intractable epilepsy (Lennox Gastaut Syndrome) went seizure free on the drug.  Unfortunately, we had difficulty getting her off Risperdol and were unable to be in the trial.  Remember that?  Well now, that drug is out of trial phase and has been approved by the FDA - Fintepla.  The plan now is to give Fintepla a few months to work, and discuss CC Brain Surgery next summer.  

Jenelle had her VNS Outpatient Surgery on September 9 and did great.  We started Fintepla last Friday and will have an overnight EEG next week to see how things are going.  If Fintepla helps, we will try to decrease either Felbamate or Depakote.  

Jenelle has really be a joy lately.  She is so relaxed, and seems to really love having us all to herself.  Last month, we took a small vacation with Jenelle, Grandma and Grandpa to Seattle, Washington to go to Big Brother's football game against Pacific Luthern University.   Jenelle did really well.  She was perfect on the plane - wearing her mask the entire time - and was quite a trooper at the football game.  She even climbed 25 stairs to the top of the stadium so we could sit undercover from the rain.  It was a great trip and gives me hope for other trips like this in the future.

So tomorrow, Jenelle will be 19.  14 years past her "life expectancy."  Every day with her is a blessing and we are so grateful.  However, now that Jenelle is in her late teens, the chances of SUDEP (Sudden Unexplained Death in Epilepsy) increase.  October is SUDEP awareness month.  Every night I make sure to give her a kiss and say a small prayer because tomorrow is not guaranteed.  All we can do is keep her healthy, keep her happy and hope for many more days with this amazing young lady.  

Here are some photos our summer trip to Tahoe to visit Nana, and from Seattle of our Birthday Girl.

Only girl cousin on Jones side.

Sitting pretty on the plane to Seattle.

Enjoying Pike Place Market.

Sharing secrets with Nana.