How is Gage Doing?

How is Gage doing? That is a question we seem to be getting all the time. People care. We have been so astonished at the love and care of the people around us- many people we don't know. There haven't been many days where we haven't received a card in the mail from people who care about Gage and our family. Again, we can't say thank you enough for your love and support for our family. The encouragement from cards, gifts, and money has been more of a blessing than words can communicate.

How is Gage doing? That is a difficult question to answer - at least, it is for me. I usually answer something like, "Gage is doing well; he doesn't even know that he is sick." Honestly, I don't know what else to say. One of the great blessings in all this is that Gage doesn't know what is going on in his body and is too young to understand the seriousness of it all. So yes, in that sense, Gage is doing well, and I am grateful for that. I want to communicate that to people.

How is Gage doing? We left last Sunday for Rochester, and Gage got to take CJ with him. Having his brother come along was very helpful and added some entertainment to the trip. At this point, Gage knows what going on a trip to Rochester means, and when we talk about leaving, he immediately puts up his own version of the brick wall and is dead-set against going. We also stayed at my sister's house, and Gage saw his cousins. He really enjoyed playing with them.

How is Gage doing? We got back from our trip to Rochester last night. This was a fairly quick trip because Gage had to have an MRI on his heart. ECD can affect multiple organs of the body, and it is common for it to affect the heart. When it comes to Gage's case, they have seen lesions on his bones from his head to his feet, but his other organs have not shown signs of being affected by the lesions. The last time we were at Mayo, they did a series of scans and tests that examined his body and one of them showed that his aorta was slightly enlarged. Our doctor thinks that this could be because of the ECD and wants to make sure that they have some really good images of his heart to be able to compare it with pictures that they will take later, so we had to have a special MRI done of his heart. The MRI showed that his aorta was slightly enlarged, which we already knew, but it also showed that some of the tissues of his heart didn't look exactly right. Our oncologist wants us to go to a cardiologist and have them look at things to ensure something else isn't happening. We do know that there are no lesions on his heart like there are on his bones and that the way the tissues looked could be caused by something other than ECD. For instance, we have been giving Gage iron supplements for the last while because his body was low, and apparently, being low on iron could be the cause, but we just don't know.

How is Gage doing? Well, we learned today that our doctor will present Gage's case to a group of doctors specializing in ECD. I would assume that there are several reasons for this, the first being to make sure that the course of treatment they are planning for Gage is the best course of action. Our doctor also wants to make sure that she isn't missing something. We have been impressed with our doctor in that she seems eager to consult with others and strongly desires to do what is in Gage's best interest. We have actually been comforted by the fact that she will tell us when she doesn't know something and not just try to comfort us by speaking out of turn. The truth is, very few adults have been diagnosed with this type of cancer, and far fewer children. Gage is the first child to be diagnosed with this cancer at Mayo. Before you tell us that we should look into going elsewhere, you must keep a few things in mind. When I say that a few children have ever been diagnosed with ECD, we are saying that just a handful worldwide since 1937. We don't know the exact number, but Gage may be only the 12th little boy with ECD (this is why my hat says "12 Gage"). You should also remember that when diagnosing and treating adults with ECD, the Mayo Clinic has some of the best doctors in the world who have obviously consulted on Gage's case. Do you know how many adults have been diagnosed with ECD since 1937? Around 800, and most of these are middle-aged males.

One of the first doctors we met at Mayo in the Emergency Department said that they would move mountains to help our child; we have seen the doctors do above and beyond and have no reason to not continue to entrust Gage to their care. Of course, this is a lot easier when you know that the Great Physician has Gage in the palm of His hand, and we have entrusted Gage's care to the One we know has the power to heal. The fact is, even though a lot of attention has been given to supernatural healing (and certainly, we pray for that every day), we know that the Lord often works through modern medicine. For this reason, we continue to pray for our doctor and the team that makes decisions concerning his case.

Another question that we often get has to do with how people can pray for Gage. We are so flattered that there are so many people around the world praying for Gage. Thank you from the bottom of our hearts. Here are the top three ways you can join with us in prayer. First, We continue to pray for healing. We know that the doctors tell us that the medication they are planning for Gage will, at best, manage what is going on in his body. There is no cure for ECD, but we know that it is possible for the Lord to completely heal Gage. Second, we are praying for our doctor today as she presents Gage's case with experts on ECD. We are praying that something really good comes out of this. Desirae told our doctor that we would be praying for her; in fact, we have told her this several times. I don't know where our doctor is with Jesus, but we are praying that the Lord uses Gage in some way to bring her to faith in Jesus. Third, we continue to pray for some insurance/medication things to be resolved. Without going into too much detail, we continue to pray that the Lord will work all of this out.

Again, we are so thankful for all of you. Words can't express how much of an encouragement you have been to us. Thank you. This post has gotten a little longer than I planned. Sorry about that. Also, we are going to post our updates and things on a website because there are many that are not on social media, and this will give us a way to share with them as well. I was planning on having the website in better shape before it was used. Oh well.