WesleysWin

You guys are going to have to forgive me.  I forget who I have updated and who I haven't.  The days are all running together.  Below is my Facebook post from a couple days ago. It's surreal, it could end up going any number of different ways due to the proximity of the one aneurysm to his brain stem.

I have news.  Wesley will have a craniotomy on Thursday, December 7. While this is scary news, and not what we had hoped for, he will be in the most skilled hands possible. Two weeks after the original craniotomy they will need to go back for the second aneurysm. Surgery will be in Utah, and we will be there through the holidays. Yes, December 7 is a long way away, they have assured me that he is stable enough at this time to wait that long.  The reason they were not able to operate on Wes while we were there the last time is because of the complexity and rarity of what has happened. He has a large surgical team who have been meticulously planning, and they needed an OR for the whole day. Obviously, I'm terrified. I don't want to get into risks and possibilities and outcomes because the significant and likely outcome is that they will be able to repair the issue and after a year or so, Wes will be able to move on with his life. I do know this, he is ready to fight like hell. And while he is incredibly scared, he knows that this is the only option to save his life. Thank you for the unending prayers for my beautiful boy.  We feel that and are so grateful for the outpouring of love and support.  Please pray for Clayton as well.  He's struggling in his own way, albeit with a very brave face.  What they have found so far is that Wesley has been an absolute miracle since before his birth, and if he can defy the odds placed against him for the last 13 years, and thrive in spite of it I might add, he has this without a doubt. God is not done with Wesley's story yet.

If you would like to send cards for me to put up in his hospital room, I would love to do that. I don't know how this platform works, but shoot me a message on Facebook at Darsie Barker Chase or text me, and I'll give you our address. We are going to celebrate Christmas the first week of December at our house before we go.

For those of you that don't know Wes personally, he loves lacrosse and hockey, he loves legos, he loves the Denver Broncos, The Tampa Bay Lightning (its a phase, go Knights go) and the Las Vegas Desert Dogs, and he loves playing the trumpet.  His 2 focuses right now are to not fall behind in math class, to get back to band and be first chair, and to go to Catalina with his class in May.

I also want to say this.  What you have done for me has insured that I have not had to leave his side.  While I get our finances squared away, this has been just an unbelievable blessing to carry me through.  Like most people, I carry short and long term disability on myself, never in my worst nightmare did I think I needed to carry it on my boys.  I will never forget that you did this for us.

I just wanted to post an update.  We were told today that Wesley will need a full craniotomy on one aneurysm and a stent placed in the other.  They cannot be done together, so he'll have the craniotomy first and the stent placed second after a couple of weeks of recovering.  They are sure that this was caused from something he was born with.  We will be in Utah close to a month.  This is obviously hard news, and scary, but Thank God it was found before we lost him.  This is the only option we have to save Wesley's life.  We will likely be leaving at the end of next week.  I just want to say again how grateful we are for the love, prayers and support.  This has been the most surreal and terrifying experience of my life.  He will have the same quality of life again at some point.  The road he is going to fight to get there will be long. He finally got emotional about it today, and he knows that it's ok to be sad, but he has unbelievable courage and knows that there is a greater plan for his life.

Hi all!

I realized I had not posted an update in a bit, and I wanted to keep everyone up to speed.  First off, we are so overwhelmed by the outpouring of love and support.  I will be off work for quite some time, and I am not good at asking for help at all.  This means more to me than you could ever know.  First off, we are home for a couple weeks.  At first, I was adamantly against this, and I literally sit up all night watching him breathe, but the neurosurgery team assured me in the short term they have him in a safe situation that can allow this.  He feels better than he has felt in years, so keeping him safe on my end has been a bit of an interesting journey. (He's driving me crazy). We will only be home for 2-3 weeks while they continually evaluate their plans and prepare for our next steps.  There are two radically different ways this could go, and we have got a lot of feelings about that, but we ultimately need to trust that the right decision will be made.  One of those options is extremely aggressive, but it's also his best chance to have a fully normal life. He has an incredible attitude about the whole thing, and I'm trying to give him space to be scared or angry or ask questions.  It's hard. Anybody that knows him knows he has the biggest heart in the world, and is a major people pleaser. I am continually amazed by his strength and kindness in the face of some very hard things.  All of his nurses kept talking about what a sweet and hilarious kid he is.  No 13 year old should ever have to go through what he is facing. In short, there is not a lot to report at this point.  We just continue to wait and pray for the team that has his life in their hands.  If you are a part of our school community, he will be in first period for as long as he is up for that while we wait.  Wesley's 2 greatest fears are being knocked down from 9th grade math and losing his hair, so he's going to go to class for an hour a day and waiting until the last possible second to shave his head. Please pray for his strength, continued positive outlook, and our path forward. I have walked through a lot of hard stuff with my sons, this is going to test even me.