Wednesday, August 22, 2012

Hope for a Brighter Future

Will hanging out in D-town

Will's big day is quickly approaching.  In a week and half, we will be traveling to Detroit to begin the two stage brain surgery that we hope will eliminate the remaining abnormal electrical activity in his brain and help our son to develop. 

Earlier this week we were back in Detroit for pre-surgical testing.  While we were sitting in the waiting room during Will’s MRI, we realized that this was the 10th time that he has been sedated in the past 18 months.  We also marveled at how tough we have become since his first sedation when we cried like babies, although it never gets easy to watch your little boy get sedated and wheeled away.

While in Detroit we met with Will’s neurosurgeon to review the plan for the upcoming surgery, as it is a complicated one.  Our neurologist was emphatic that it is bad enough we are having to do a second brain surgery, we want to make sure that we don’t have to do a third.  To accomplish this, Will is actually going to have two separate brain surgeries, the first to place a grid on his brain, and the second to remove additional brain matter. 

We will be driving out to Detroit on Monday, September 3rd, and we will take Will off of all medication.  The first surgery will take place on Tuesday, September 4, and will take approximately 5 hours. The neurosurgeon will make a fairly large opening in his skull and place a grid of EEG leads directly on his brain.  Normally, when Will has an EEG they simply glue the leads to the outside of his head. By placing the grid directly on his brain, the doctors will hopefully be able to get very accurate data on exactly what is going on in his brain.

Once that surgery is over, they will close up his skull and we will wait for 3 days with wires coming out of Will’s head that will be directly connected to his brain.  He will not be sedated, and he will not be restrained. He will be in his crib or we will be permitted to hold him but that is as far as he will be allowed to go.  It will be our job to have one of us awake 24 hours a day to watch him and make sure that he doesn't hurt himself, or (God forbid) pull out the grid. 

During this 3 day time period, the doctors will be able to create a map of Will’s brain function.  When he moves his left arm, they will know where in his brain that movement originated, and so on.  They will also be able to determine with much greater accuracy exactly where in his brain the abnormal discharges are coming from, and exactly what brain matter needs to be removed.

Finally, on Friday, September 7, the surgical team will take what they have learned from the brain mapping and they will operate to remove all of the remaining bad brain tissue. This surgery will take approximately 6 hours.  We will not know for sure what portion of the brain they will be removing until the day before this surgery, after the doctors have compiled the data obtained from the grid placement.

Enjoying time at the beach
As scary as it sounds, we know that the grid placement is a very important part of this surgery.  We have been told that we will most likely be removing the left parietal and occipital lobes, which are located directly adjacent to the temporal lobe that was removed in November.  We considered removing the left parietal and occipital lobes during his first surgery, but none of the many doctors we saw could say whether there was actually something wrong with those lobes or not.  The grid placement will answer that question for us.

We are very nervous about this surgery because it will be far more extensive than the last surgery in November, when doctors removed Will’s left temporal lobe, or approximately 11% of his brain.  We anticipate that they will be removing Will’s left parietal and occipital lobes, which comprise approximately 20% of his brain.  When all is said and done, he will be missing roughly 1/3 of his brain, a very scary thought. As part of this, they will have to sever Will’s optic nerve, meaning that he will lose 50% of his field of vision in both eyes, and as a result he will have absolutely no peripheral vision on his right side. There are also a LOT of other risks, that we hope we never have to describe in this blog.

However, we are very hopeful that at the end of this surgery, Will is going to have a complete absence of irregular electrical activity in his brain.  Despite the horrid risk of side effects in doing this, we are very optimistic that the overall net effect will be tremendously positive.  Because of his young age, his brain still has considerable plasticity, or ability to adapt to changes, which means that aside from the vision deficits, the remaining areas of his brain will likely be able to relocate all function lost from the tissue removed.

People are asking us what they can do to help.  The truth is that now more than ever, we need prayers for Will.  We are down to our last option for hope for a brighter future for our son.  If this works, we will have our miracle.  If it does not, we will not really have any other options left.

Despite all of the risks, we need to remind ourselves that we are actually in a very enviable position.  We know a lot of parents of children with Infantile Spasms that would give anything to eliminate their child’s seizures or to be a candidate for surgery. The fact that we have been given another chance, and a reason to imagine good things for our child’s future is not something that everyone gets.  So even though we are face to face with the horror of a second brain surgery, we are trying to keep a proper perspective and remember that this is actually a very good thing.  

Please keep the prayers coming!!!


  1. Hi Kelly and all...Thank you for your update it is so nice to see Will and his smile. My prayers are with you and your family. I pray that God protects little Will and that He guides the hands of the surgeons with care and with precise direction. When I met Will I saw his brave strong soul. He is an amazing little boy. Please give Jack a big hello and high five from me!! Stay strong and may God bless.

    Much love,

  2. Stay strong! Will is in my prayers! - colleen slattery

  3. My heart aches for you when I read this post. I can't imagine going through what you will go through in the next month. But Will is soo lucky to have so amazing parents who are doing the best for him. We will definitely keep you guys in our prayers and especially little Will. Tell him Jackson "says" Hi! We think about you guys often!
    Love from VA!

  4. Dan and Kelly, our prayers are for everyone in your family and a speedy successful recovery. This ordeal and the way you have handled are inspiring to both of us and I am sure many others.

    May the healing power of the Sacred Heart of Jesus be with you all.

    Tom and Marianne

  5. I truly believe in the power of prayer. You can count on mine. God Bless

  6. John and I and numerous friends both in Philly and Florida will be praying for Will. You, Dan , Jack and Will are constantly in our thoughts and prayers. God bless you and give you all the faith and strength you need!



  7. Dan and Kelly,
    A quote I thought might help..."Come to Me when you are weak and weary. Rest snugly in My everlasting arms. I do not despise your weakness, My child. Actually, it draws Me closer to you, because weakness stirs up My compassion-My yearning to help. Accept yourself in your weariness, knowing that I understand how difficult your journey has been."
    Love, Kerry