Update on Haden
First of all I want to thank those who have been faithfully praying for our Son Haden. This is an update on what is going on with him. Many of you know that he has Epilepsy and Autism and has been hospitalized for a kind of seizure activity that can at times not be controlled by medication, they call this Status Epilepticus. They also know that there is a lesion on his brain that is rather deep in the left side which in January of this year they noticed on the MRI, there could be a possible nodule/tumor in the lesion. Through the test that he has had over the past months it has been determined that whatever may or may not be growing in that area is slow growing and not fast growing.
First of all I want to thank those who have been faithfully praying for our Son Haden. This is an update on what is going on with him. Many of you know that he has Epilepsy and Autism and has been hospitalized for a kind of seizure activity that can at times not be controlled by medication, they call this Status Epilepticus. They also know that there is a lesion on his brain that is rather deep in the left side which in January of this year they noticed on the MRI, there could be a possible nodule/tumor in the lesion. Through the test that he has had over the past months it has been determined that whatever may or may not be growing in that area is slow growing and not fast growing.
He is receiving care from CHOC (Children’s Hospital of
Orange County) which happens to be a level 4 comprehensive care unit for
pediatric epilepsy. Bottom line, it is supposed to be one of the best in the
country. After the team of doctors reviewed all his records and test, they
determined last week that the best course of action for Haden is surgery. From an oncologist point of view and from
epileptic point of view. The surgery will be two separate surgeries which I
will explain but for those that do not like to hear about this type of thing,
you may want to stop reading.
The first surgery will be to open his brain and place a grid
of electrodes directly to the brain. They will then close the brain with wires protruding
from the skull and begin to monitor him and his seizure activity. Hoping to
pinpoint exactly where the seizures are generating from and how far they spread
in the brain.
We do not know how long it could take for them to get enough
data, please pray it is only a couple days. During this time they will also be
testing how much of the brain needs to be removed. Once they determine
everything, they will go back into the second surgery and remove the brain
tissue. The tissue will then be sent to a pathologist to determine what the
growths are and if there is any treatment needed. In other words, radiation or
chemotherapy.
Haden’s seizures seem to be increasing to once a week,
however they seem to think that this is not an emergency surgery. We have a
vacation coming up on the 19th (just staying in SO CAL) that they said
we could go ahead and take. The most recent news for a date is on October 23rd
(because of getting the team of doctors there on the same day). We will keep
you up to date as they determine whether it should be sooner.
Haden knows that he is going to have surgery, he is handling
it like a champ! As you might imagine the stress on our family during this time
has been tremendous. Dealing with his special needs and maintaining a balance
can be hard. Work related stress has also added an element of stress that is
hard to even explain. Grandma and Grandpa are a tremendous help as well as our
children. There is strength in numbers and with 10 children, I believe we are
finding the strength to get through this together.
Far more than all of that,
The Lord has been faithful to give the strength needed for each day and the
peace of knowing that whatever darkness we are walking towards, He will get us
through. We know that many, many faithful Christians are praying for Haden,
and we are so thankful for those prayers!
With Love,
Jon, Pam and Family
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