In life, we often find ourselves caught in the ebb and flow of countdowns, each one carrying its unique emotional weight. For some, they herald joyous celebrations and anticipated milestones, while for others, they mark challenging hurdles and moments of reflection. In our family, the current countdown falls somewhere in between – a blend of hope, resilience, and a touch of uncertainty. As we navigate the days leading up to Jameson’s surgery, we embark on a journey of both anticipation and trepidation. In this update, we aim to share the intricacies of what this countdown means for us, shedding light on the experiences, emotions, and the unwavering strength that binds our family together.
The 1st update is about Josh. We did get a diagnosis that he has what is considered pseudo narcolepsy. It’s called idiopathic hypersomnia. He has been put on medication and I feel like we’re getting our kid back because he’s definitely had a lot more energy and seemingly been able to kind of wake the part of the brain that tells him that he always wants to be in sleep mode and stay in REM. You can read more about idiopathic hypersomnia here. So the frustrating part about this disorder is that he’s tired all the time. Even falling asleep with us, even in mid conversation. This has been a huge struggle that we had been dealing with for the last year now. Which is hard since he went from one extreme to another one where he wasn’t sleeping and he was getting maybe two to four hours of sleep a night to, to know where he just can’t wake up.
He’s sleeping all the time. So, after three sleep studies, one was more specific to a narcolepsy type of panel. We finally got a result and so we’re super excited about that because the treatment has been bringing our Josh back. He is more awake, alert and coherent. And so things are going really well in that aspect. He’s still struggling but not as badly as even as even three weeks ago, when the medication was started, so we’re doing good on that.
Now On to Jameson
Another big update, Jameson. So February 5th, Jameson will be going for his first of two brain surgeries. Yes, I said two. The first is more of a diagnostic surgery. They are going to be doing what’s called an internal EEG. The full name is Stereoelectroencephalography, you can read more about that here. Basically, how it’ll work is we go in the morning of February 5th, early. I don’t know exactly what time yet.
And then we do not see him until probably late afternoon, early evening. Where at that point he will stay in ICU for one night and then be moved to the neurology floor at Children’s Hospital in Wisconsin for up to 14 days.
This test involves the neurosurgeon to drill anywhere between 7 to 20 holes in his head and place a probe directly up against his brain. This picture is from back in March 2023 when we had first talked about even going down the road of doing this testing. As you can see from the picture, they’ll be placing where you see all these little, black, and red circles in the picture with the different letters. Which at this point is 13 probes to be placed.
Jameson’s brain tumor is on this left side, in this amygdala front left temporal lobe area. It is not a large brain tumor at this point. By means of where you would see somebody having a tumor, growing out the side of their head. But in the area that it is, the front temporal lobe, it is actually big for that area. The frontal temporal lobe and amygdala controls our executive functioning, our memory, and our emotions. The area where the tumor is can also control some of his optical function. Knowing this provides an explanation as to what some of his seizures look like. If the tumor itself at this point were to get any bigger than what it is now, irreversible damages would happen, which means they can’t even remove the tumor and it can grow to the point where it’s like we lose Jameson at a young age.
Provided with all that information we were basically presented with three options, which was 1 do nothing at all and just keep praying and hoping he would heal. The second is to go straight to a resection of the tumor. A surgery where they would remove the tumor. For this they would take an area out of the side of his skull and they go in and they take out the actual tumor.
And then the third option given is doing that surgery plus this diagnostic, Stereoelectroencephalography. The reason we chose to do the diagnostic is because we are seeing more and more seizures, each are getting worse and harder to control with medication. This test would provide the doctors with a more definitive answer as to how much damaged brain tissue has happened. December 23rd was the most recent time that Jameson had back to back grand mal seizures.
We did a medication adjustment again at this point. And when we did talk to the doctor on December 27th he decided he wanted to order a bunch of blood work. And this blood work It’s not coming back with pleasant results.
Could Fall Back to Square Oneish
On February 5th will be the first surgery where they put all the probes into. They will try to figure out how far out from the tumor they are going to need to resect damaged tissue. And if they can’t remove that damaged tissue, because there comes a point where if this has crossed a certain area of where abnormal cells are happening, they have to put in a bridge device to try and provide normal connections in his brain that don’t cause seizures.
A lot of kids actually have successfully had these implanted, and then they are completely taken off of all their medications and they don’t have seizures the rest of their life, some good success stories that we’ve heard on that option.
However, at this point, they don’t know how far out they need to go from the tumor, hence the diagnostic surgery route. The bad news is if they even miss just a little bit of the abnormal cells, he can still have the seizures. And then he would still have to have two more brain surgeries at that point.
If they just went straight to resection surgery without the diagnostic he would still have to have two more brain surgeries if they missed damaged cells as it would not have fixed the underlying seizure issue.
So Jon and I decided to go more aggressive with all that knowledge. This would allow us to not have to keep seeing Jameson having seizures. These seizures are very scary. If you’ve ever seen one, you know exactly what I mean. It is important to point out that Jameson doesn’t just have grand mal seizures. He also has what are called partial seizures. For these, there’ll be times where he just spaces out. There’ll be times when his left eye will droop, or where the left eye will stay completely dilated and unreactive. Where the right eye is normal and reactive to any light you put in it. And that’s actually him having a seizure. It’s very minimal. He’s usually still coherent enough to have a conversation with us. Although that can be full of confusion.
He also has where he’ll just get tremors that’ll go through his right side. If you don’t understand how the brain works, everything on the left side of the brain controls the right side of the body and everything on the right side of the brain controls the left side of the body.
So with him having a left temporal tumor, everything that is being affected is mainly the right side, but what has been happening with his left eye issue is that the doctors feel that the tumor is pushing up against the optical controls in that same area of the temporal.
In Case You Didn't Know
His most recent MRI has shown that the tumor has gotten bigger. Jameson has had too many MRI’s, basically his whole life. For those that have not heard this part of our story. Jameson was born November, 21st of 2015 and at 12 hours old was when we initially had our 1st scare. Jameson stopped breathing. He continued to have apnea episodes for the next 24ish hours. Midway through, the nurses had really pushed for him to be taken to NICU because of the issues that we were having with that scenario. Fast forward to day 3 of being in NICU is when they said, things just still kind of seem off the norm and asked if we would give permission to do an MRI.
So he had his first MRI at 3 days old. We were let out of NICU the 5th day, right on Thanksgiving, actually, of that year anyway. So, we always think of Jameson as our turkey baby. Going home with the knowledge that he had what was at that point called a blood lesion and to follow up with a neurosurgeon. Six weeks later, we finally got in to see the neurosurgeon, this same neurosurgeon has been following him ever since that point.
Learning things as you go is par for the course, obviously. We have learned that the neurosurgeon is actually the top neurosurgeon at Children’s Hospital. That knowledge does make us feel a little bit better that he’s being cared for by somebody who has done a lot of cutting edge type of things and is actually teaching a lot of the other doctors there.
Playing It Safe
With all of this being said we are currently in what we’re considering a semi-quarantine. It has saddened and frustrated us, as it takes away from so many things. However, we know that with Jameson’s low immune system (one of the many issues he has) he can easily pick something up from somebody coughing around him and make Jameson sick. The way that the viruses seem to attack his body is a more aggressive way, and he gets really sick for longer periods of time.
The second surgery will be scheduled about six to eight weeks after we leave the hospital from the first surgery. Because his body has to heal all of the little incisions, the little burr holes that they’re going to place the probes with. And once it’s healed, which usually takes about six to eight weeks, at that point in time, will be the second surgery.
So If we’re looking at a calendar, counting time out and everything like that, that leaves us to about mid April when the second surgery will take place.
Another medical issue Jameson lives with is underlining asthma which developed because of another disease called EOE, which is Eosinophilic Esophagitis. For reasons doctors are still trying to understand, the body attacks the esophagus. One reason is the body’s reaction to an allergen. For Jameson dairy, wheat and soy, and also environmental allergies are a contributing factor to his EOE.
This has induced asthma, and the combination of him having seizures and EOE has lowered his immune system to a point that if he gets sick, he gets sick. Generally speaking he’s the one that’s usually the longest sick in our family. And to be able to still keep that surgery date of February 5th, which is just a few short weeks away, we have decided to kind of go into a semi quarantine mode.
We have changed Jameson’s OT and PT to be virtual so he won’t be around sick kids at the facility as well. We will be stepping back from invites such as birthday parties or family outings and things like that. We will be watching church from home and missing out on the fellowship. It’s a struggle that quite a while has almost become a norm in our family.
A second update on Jameson is the blood work that he had done was through GI. We have noticed in the last six months, especially, that Jameson has put on a lot of weight. He’s actually at a size that, for an eight year old, is much larger. Personally, I don’t ever remember any of my other two older boys, Joey and Josh ever being this size. We did go to GI because we are concerned and we’re not sure what is going on, the additional problem is that Jameson is eating less and less, but still putting on weight. Those test results are showing abnormalities as well.
Heavy is the Weight
All of this just adds more weight upon Jon and my shoulders. Because we’re not just dealing with seizures and brain tumors. We are dealing with low immune system and GI issues and asthma and allergies. And the gamut together just makes it very hard for us to be able to go in person to things. It’s a painful struggle, but we are dealing with it.
So, for the rest of the family we have to be very careful as well, because if we pick something up and they give it to him, that means we have to postpone the surgeries. Which, with things being the way they are, is not the greatest option.
Jameson just wants to be a normal kid, just wants to be able to have friends and do normal eight year old things, and it’s hard to not be able to give him that. Having to hold him back as he can’t do those things. And to be careful we have to also take that away from our older two which is frustrating in itself. Like with Joe, I mean, for everyone who knows Joe, he’s a social butterfly. He thrives on having conversations with people and learning their story and learning about them and seeing how many things they have as a common denominators and how things are different and how to help people. And he’s just a social kid, very social kid. And so this is a struggle for him because he thrives when he is at church. He thrives when he is out doing other activities with friends and things like that. But because of our situation with Jameson, he has to be excluded from that.
Taking a Toll
It is also taking a toll on our family’s finances in a way that I’ve never experienced before and I’m so appreciative to all the family and friends that have helped us through this journey. But the struggle is not over because February 5th is, like I said, only a couple weeks away. And the current state right now is that Jon and I are not able to work outside of our home. And the work that I do, does not cover our finances nor our living expenses.
While I do see God in so many ways, in his grace and how he is providing for us. It’s just a huge weight and a huge worry that we have sitting over our heads because things are really bad and you don’t like to say that out loud because it hurts and it’s painful. I know God will provide. I know He’s good. I know He is a wonderful, wonderful God. It’s just the human side of me that has a lot of emotions behind it. We are so appreciative of the prayers, and we would ask that you continue to pray for Jameson and our family.
As we approach this significant chapter in Jameson’s journey, we want to express our heartfelt gratitude for the outpouring of prayers, encouragement, and unwavering support from our community. In times like these, every act of kindness becomes a beacon of hope, and we are immensely grateful for the love surrounding us. If you feel called to further assist our family during this challenging period, your generosity, whether through donations or purchasing from our Christian product store, is genuinely appreciated.
Every contribution, no matter how small, makes a meaningful impact on our ability to navigate the financial strains that accompany medical journeys. The gift of time may elude us, but your support ensures that essential needs such as rent, utilities, food, and transportation are met, creating a foundation of stability for our family. We thank you from the depths of our hearts for standing with us, embodying the true spirit of community and compassion.
Please pray for our whole family, because this doesn’t just affect Jameson, this affects us all for the strength to get through all of this. We love you, we appreciate you, and your prayers and thinking about us. Please let me know if you have any questions on this update.
Garrison Family Fundraiser
Medical complexities lead to problems that you never thought you would go through. At least for me being a planner, I thought I had it all worked out. But Jameson’s brain tumor, grand mal, hospital stays, doctor appointments, therapy, and upcoming surgeries all come with expenses that have become more that we are able to keep up with. There is so much loss in time to work, and not enough assistance to help keep us afloat. And we are not even paying for anything but necessity. Rent, electric, insurance, food, and medications. All the rest we have just let go and fallen behind on. With all that said we do have a fundraiser going to help us to just pay for those necessities. If you feel called we would truly appreciate the support. You can find the link here. Or if you would like to check out our store there are many products already there and many more being added everyday. There are two listed below.
Making and treasuring family memories is a divine blessing. The Family Memory Making Planner is here to guide you on this beautiful journey. We pray God helps you to use this tool to create and make memories that last a lifetime.
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