Back from Boston…

Guys! It is so crazy to sit here and think, that just two weeks ago plans for Ollie’s health were kind of up in the air, almost at a stand still waiting for this appointment for direction. Now to think that we have a solid plan and are making moves to get everything arranged is just simply mind-blowing!

Through out our travels last week, we had wonderful weather, clear roads and met some incredibly nice people. We arrived in Boston last Thursday afternoon with enough time to see some of the sights. Our hotel was a block from Fenway park so I finally got to see the Green Monster!!! Ethan and Ollie were definitely not as excited as I was but oh well. We were able to investigate the world of Target in the city where carts get their own escalators and you have to ride to the third floor for all your grocery needs. The Time Out Market was within walking distance as well. It is a marvelous place with about twenty different restaurants and forty foot tables. Ollie loved it as he could talk to as many people that would listen to him! The boys finished their day with a dip in the pool as I spent some time enjoying the peace and quiet.

Can you tell we are near Fenway park? Go Red Socks!

Friday we arrived at our appointment pretty early but they were able to get us in right away. We were able to meet everyone from PA’s to research people, social workers, residents and nurses. Our first doctor that we met with was his Hematologist/ Oncologist. She is more involved with medications and research on gene mutations as well as knowing what medications are coming up that would be helpful for Ollie. This was really interesting for us to know where Ollie’s genes mutated as well as how that created the domino effect for all the other genes underneath, creating the overgrowth that is Ollie’s left cheek. As she concluded our appointment with her, she mentioned that the surgeon that we were scheduled to see, was called into an emergency surgery and wouldn’t be available to see us. Ethan and I were crushed. Surgical options were the main reason that we drove all that way. She mentioned that Ollie would probably do just fine staying on Sirolims and that we should just keep doing what we have been for the foreseeable future. She left the room and all that could be heard was Ollie’s tap, tap, tap as he composed music on his tablet. Ethan and I just looked at one another and said, “we need to pray”. So we did.

When Ollie’s cheek wasn’t being poked, this was where he was! Tablet time is saved for appointments so that Ethan and I can really focus on what is being said by the doctors.

Not five minutes later, in walks the surgeon and all of his assistants. Ethan and I were speechless. Once we got over our comatose state, we had over an hour long conversation about Ollie’s options for surgery. He did an exam on Ollie and decided that he would be able to help him and that the sooner the better. The way the surgeon explained it was that anything that is applying pressure on something, is resulting in some kind of wear. With the extra fluid in Ollie’s cheek, it is pushing on his nose, teeth, and jaw bones. The longer we wait to release some of that pressure, the more damage is being done to the structures underneath. Damage that cannot be reversed in most cases. I will save you the gory details of surgical approach but one thing I will say is that he will be going in through Ollie’s upper gums on the inside of his mouth. This will leave no scar on the outside and hospital recovery time is very small. We should only have to stay in Boston for less than a week before we can come home!

This kid takes on the world with so much joy and gusto.

Next steps? Well Ollie has been scheduled for an MRI here in Michigan at Helen Devos on the 25th of February. We would appreciate all of the prayers, because this is a scan that he will need to be sedated for. Once the surgeon in Boston sees the images and gets a surgical plan in tact, we can schedule surgery for Ollie. Wow, that seems crazy to write! So in other words, surgery will be this Spring for Ollie if all goes well.

We got this! (This was taken at the Time Out Market, which is a must see for anyone going to Boston)

Now this surgery will in no way cure Ollie because there isn’t a cure. This is a preventative measure to release the pressure in his cheek. After surgery, it might seem like his cheek is even bigger, that is to be expected. With Ollie’s lymph system it takes much longer than the average person to filter out all of the extra fluid that naturally occurs when surgery is done. So it might take up to six months for us to be able to tell if surgery was successful or not.

Working hard on his driving skills in his fort he made in the back seat!

Ethan and I just wanted to put a huge thank you out to all of you who have been prayer warriors for us through out this entire process. We could not have done it without you. Thank you to all of you who provided food and road entertainment for Ollie. He absolutely loved all of his gifts and they kept him entertained for the entire ride. God could not have given us a better support system! So Thank you again and keep looking for those updates!

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