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Journal entry by Quinton Adkins

Hi Everyone,

The last week as been a little crazy.. I received my chemo pills last week Wednesday and started my first double dose cycle. I finished the cycle last night. So, I have 1 cycle down and 5-11 left to go 😊 The first few days were not so bad, but the last few days have been pretty hard. Symptoms can continue to last for 3-4 days after stopping the chemo. The gift that keeps on giving.   

I am hoping the symptoms go away quickly, so I can have a few “nice” days before I start the next cycle.

This week I also met with my new Neuro Oncologist. Unfortunately, the one Neuro Oncologist in West Michigan is moving out of state (which there are only 8 of them in the state of Michigan). I have now been transferred to Henry Ford hospital systems in Detroit. My care plan is pretty much the same, with a new MRI to be done after my 3rd cycle of chemo. The doctor didn’t really have anything new to add. The only thing he found was a little white dot that showed up during the contrast portion of my scan. It is in a completely different area than my other tumors, centered in my head, around the level of my eyes. It’s not too concerning right now, but its something we will need to keep an eye on during my next scans.

Speaking of scans, they also talked about my MRI schedule. So far, I will have scans every 2-3 months during my course of chemo. Then for the next 2 years, I will have MRI’s every 3 months. After 2 years, I get to graduate to every 6 months. Luckily the tight space doesn’t bother me too much, although I didn’t like having to wear a mask during the MRI.

I also found out I need to have a comprehensive cognitive exam. With the brain surgeries, chemo and radiation, they want to get a baseline on where I stand cognitively. Mentally, I have noticed changes and it will be good to keep an eye on this. As my son likes to joke, I am down to half a brain and we need to protect what I have left 😊.

Lisa has slowly been recovering from her surgery. The first week was rough and she was out of it. Although it was rough, she is a fighter and resilient (she must be since she married me). She is getting better and able to move around more each day.

Thanks,

Quinton & Lisa

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Journal entry by Quinton Adkins

Hi Everyone,

After my last update I had my MRI and an appointment with my Neuro Oncologist. They told me that this scan would serve as a bass-line scan to determine if any new growth of the tumor is occurring. The good news is that the tumor has not grown since my last surgery.

There are some areas around one of the cavities in my brain that showed up with the dye they use. From what they can tell right now, it could be inflammation from radiation or could be small signs for Brain Necrosis. It will be a spot that we will closely watch (hopefully just some inflammation as the necrosis is much more serious).

My Oncologist has put me on a 3-month rotation for MRI’s. So, every 3 months I’ll get to spend some time in my favorite MRI machine. Hopefully Covid will be a little more under control as I had to wear a mask during my MRI. Not the end of the world for me, especially since it led to good news.

Lisa’s surgery went well. I was able to sneak into the recovery area and wait with her (2-3 hour wait to get a room). Luckily, she was cleared and able to go home the same day. Recovery has been harder. She is currently in a lot of pain and can hardly move.  

Overall we are doing pretty well. We joked that we hope we don’t need any more surgeries this year (the hospital staff is getting pretty familiar, might need to invite them to Christmas).

Thanks,

Quinton & Lisa

Journal entry by Quinton Adkins

Hi everyone, 
today you are getting an update from me, Lisa, instead of Quinton. 

Quinton is at the end of his 4 week break, and I am dreading having him start chemo again. I hoped these last 4 weeks would be like everything was before we found out about his cancer, but sadly, that wasn't the case. I had hoped he would be feeling well, and he has been really struggling. He has been feeling very sick, tired, and emotionally drained. Which in turn has me worried and emotionally upset. He hasn't been able to really do much of anything, as he gets tired very quickly and if he doesn't rest, he gets sick. He has also been struggling with eating over the last couple of weeks and has lost a significant amount of weight, so we have to keep an eye on that.
Over Independence Day we spent a couple of days at his sisters house, so we could enjoy family time and the cousins could play, and they have a pool. Just the kids playing in the pool made the water move too much for Quinton and he felt very ill. It's hard for us to accept that this is the new normal. The kids don't understand why dad can't go anywhere, and why they can't have friends over. 

Quinton has an MRI scan tomorrow (friday) and we are hoping it will be good. We always get super nervous before a scan, because who knows what they'll end up finding! We are hopeful and I'm trying to attract positive energy by staying positive as much as possible. 

In other news, we found out that I will have to have a hysterectomy, and the surgery is scheduled for july 23. I guess we are really on a roll with medical expenses this year, so whats one more surgery, right? 😀 Maybe we will get a family discount or something :) Please keep us in your thoughts over these next couple of weeks, as I will be layed up and Quinton will be on his new double dose of chemo, so it will be really hard on the kiddos... (and us if I am being honest). 

Also, today is Mason's birthday! Our sweet little boy is 7 already, and we are so happy to be celebrating him with Quinton. At the beginning of the year, we really didn't know if Q would be alive to see this. So we are very very thankful that we have such a great medical team working so hard to give us as many years as possible! 

As always, until later, 
Lisa 

Journal entry by Quinton Adkins

Hi Everyone,

It has been a very busy past couple of weeks. The biggest excitement is that I completed my first round of Radiation and Chemo. Now I am in the middle of my 4-week break! Unfortunately, the Radiation side effects takes about 2 weeks to wear off after the first round.

I did get to keep my Radiation mask. The kids thought it was pretty funny looking and of course everyone had to try it on. I have also been leaving the mask in different places around the house to try and scare Lisa.

One thing that has been hard for me mentally was two big milestones that back in December when I was first diagnosed, I didn’t know if I would make it or not. The first one was Lisa and mines 11 year anniversary. The second was making it to Father’s day. My situation now is not as dire as what I initially thought back in December but mentally it was still something on my mind. As a Project Manager, milestones and setting goals are right up my alley 😊.

Completing this round of Chemo and Radiation also brought on some mixed emotions. I was happy for the break, but mentally its hard not to be doing something to fight the cancer. As it seems with most people’s cancer experience, the common motto is hurry up and wait.

The next rounds of Chemo will probably be harder. My current dose if Chemo is going to be double the strength. Luckily, it will be cycles of 5 days on Chemo, then 25 days off. The current plan is I will be on 6 cycles of this regiment, which should be completed just after Christmas.

Another set of good news is that I have my next MRI and appointment with my Neuro Oncologist in GR scheduled. I will have the MRI on July 17th and then I will have my appointment with the Neuro Oncologist on July 20th to review the results. The big goal here is to hopefully not have any new growth. My type of cancer does not have a cure, is considered life shorting and could come back as a different type of brain cancer (which would be very bad since my type is considered the most treatable compared to other types). However, we have done everything we can to fight this, so I feel like we are on the right track.

Overall, I am doing well. I have been able to spend a lot of time with my family which has been great. I am very thankful for how my body has reacted to the treatment. I have heard stories of people reacting worse than what I have had so far.

I like to end with a joke and my current one is a little dark… I didn’t realize that my “Middle Ages” happened when I was 15. (Totally joking, I am fighting for a lot more time 😊)

Take Care,

Quinton

 

Journal entry by Quinton Adkins

Hi Everyone,

Just wanted to send out a quick update. Things have been going well so far. I have noticed that the fatigue side effect is starting to hit me full force. I am also getting nauseous more often which is a side effect from the Chemo and Radiation.

Along with all of that, I started to notice that my forehead was looking like it was getting sunburned. Not sunburn, but irritation from the external beam Radiation. Plus, the back side of my head (where all my hair fell out) is also starting to get the red irritation.  Overall though, I feel like the symptoms could be much worse, and I hope they don’t get worse as I progress through treatment.

On a positive note, I only have 8 more Radiation treatments to go and my current Chemo cycle will end once I complete Radiation. Then, I will get a 4 week break from Chemo so I can regain some strength. After the break, I will have 5 days on double the dose of my current Chemo. Then I will get 25 days off before starting another cycle. In total, I should have about 8 cycles of the double dose of Chemo. Which if my math is correct, I should be finishing up with Chemo within the first couple of months of 2021.

That is the current plan, but it may change depending on how my next scans go. Fingers crossed that I get clear scans or no growth 😊 Also, I am getting more used to the new hairdo. Its actually been kind of nice since its been so hot recently.

Thanks,

Quinton

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Journal entry by Quinton Adkins

Hi Everyone,

Last week was another roller coaster of a week. The started off well. The fatigue from the Chemo and Radiation has started to set in. Luckily, that has so far been the worst of my symptoms which could be far worse. I also had an appointment with my Oncologist for a checkup. My blood levels all looked good and they are going to schedule my first MRI scan in a couple of weeks. Now my Scanxiety can start setting in 😊

I did have a pretty low point on Friday evening. As Lisa and I were relaxing after the kids were in bed, Lisa reached over because she thought I had some fuzz or something in my hair. Nope! It was a big clump of my hair. My hair started falling out on Friday evening and by Saturday morning, I had a big bald spot. Of course I have been warned this could happen but it was still shocking nonetheless. By Sunday, the spot had grown a little larger, enough that it looked pretty bad. So, last night Lisa shaved the rest of my hair off (I did not want my new nickname to be patches).

The hardest part of the whole thing was with Nora. When she saw me after my head was shaved, so got really scared and started crying. She didn’t even want to come up to me. I’ll admit, that was pretty hard for me to handle. Eventually tough, she seemed to get used to it and I was able to sneak in a bedtime hug and kiss.

May has been a pretty interesting month. I am glad we made it through and looking forward to see what June brings us.

May was also important because it is the month of “Brain Cancer Awareness”. I must admit though that I did not know that until I was diagnosed with cancer. So, to end May, I wanted to share some Brain Cancer facts for 2020:

An estimated 700,000 Americans are living with a brain tumor

An estimated 87,240 people will receive a primary brain tumor diagnosis in 2020

The average survival rate for all malignant brain tumor patients is only 36%

An estimated 18,020 people will die from malignant brain tumors (brain cancer) in 2020

Brain tumors are the eight-most common cancer overall among persons age 40+ years, eighth-most among males and fifth-most among females in this age group

Brain tumors are the fifth-leading cause of cancer-related death in males age 40-59 years

The most prevalent brain tumor types in adults:

Meningiomas

Gliomas (such as glioblastoma, ependymomas, astrocytomas, and oligodendrogliomas), which make up 81% of malignant brain tumors in adults

The five-year relative overall survival rate for adults over the age of 40 diagnosed with a brain tumor is only 21.3%

Malignant brain tumors cause an average of 20 Years of Potential Life Lost (YPLL) for individuals diagnosed as adults, which exceeds most common cancers

Despite the number of brain tumors, and their devastating prognosis, there are only five FDA approved drugs – and one device – to treat brain tumors. For many tumor types, surgery and radiation remain the standard of care

To end this entry, I wanted to share a few jokes I heard:

There's eight of us here

We'll need ten to start the cancer experimental treatment. Let's get tumor people.

 

My friend said cancer was nothing to joke about

I found that statement rather tumorous

Thanks,

Quinton

 

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Journal entry by Quinton Adkins

Hi Everyone,

So, I am heading to the end of week two of Chemo and Radiation. So far, things have gone surprisingly well (hopefully I just did not mess this up for myself). I have had 10 Chemo treatments and 8 Radiation Treatments. My doctors did warn me that most symptoms do not start to appear until weeks 2 and 3. Hopefully the next few weeks go by smoothly.

In 5 to 6 weeks I should have my next MRI. I am keeping my fingers crossed that the tumors at least have not grown and ideally, they have shrunk. We do have a plan “B” if we do not see any good benefits from the current course of Chemo. There is another Chemo treatment plan that my doctors could switch me to. Although the other treatment option is more toxic to the body, which is why we are trying the current Chemo.

The biggest symptoms I have been dealing with are tiredness and dry scalp. The Chemo and Radiation both have side effects of causing drowsiness. We also went out and bought some special shampoo to help my scalp. Hopefully, the systems do not get much worse.

Today is Nora’s birthday and I am very grateful that we can celebrate with her. She has been talking about her birthday since Christmas time. It is sad that she is not able to have a birthday party with her friends, but we will make it up once it is safe to do so. We are trying to get outside to enjoy the nice weather as much as possible. Although it takes me awhile to prepare to go outside since I have to stay on top of putting sunscreen on (I would not want to get a sun burn while going through Radiation treatments, ouch!😊 )

I hope everyone is doing well and as always, thank you for the support.

Quinton

Journal entry by Quinton Adkins

Hi Everyone,

Sorry for the bombardment of updates this week. Like my surgeries, things seem to change very quickly. Earlier this week I was fitted for my radiation mask and had my chemotherapy “Training”. Originally, I thought I would have another 2-3 weeks before actually starting the chemo and radiation. I got a call on Thursday afternoon from the radiation office, and they wanted to move me up and start my treatment tomorrow. The big issue with this though, was trying to move up the delivery of my chemo pills because they must be shipped from a specialty pharmacy. About 2 hours on the phone later, I believe I got it all figured out. The Chemo drugs were delivered Friday afternoon, so I am all ready to start Chemo and Radiation tomorrow.

So, I thought I would have a few more weeks to prepare myself before starting chemo and radiation. Although, I am happy to get the process started because that means I’ll get through this earlier so I can move on to something else in my life. To start, I’ll have 6 weeks of chemo where I will need to take the pill 7 days a week. During that time, I will have radiation for 6 weeks, but only Monday through Friday. From there, I get a 4 week break to recover and build up a little strength. Then, they are going to double my dose of chemo and I’ll have 6 cycles of chemo to go through. From there, depending on my scans, I may start a “maintenance” chemo but that will ultimately be determined down the road.

I must admit, this next part of the course is the most nerve wracking for me. With the surgeries, they were always removing the cancer and it always felt more proactive. Now, I have to basically poison my body, hope I survive, and hopefully the treatment gives the cancer hell for me… I know nothing is ever promised in regard to time, but it’s a very strange feeling starting this portion of treatment. It seems very barbaric, although so does having someone cut open your skull and remove some of your brain.

Anyways, the weather has been great and the kids, Lisa and I have been able to spend some nice time outside. I feel very fortunate to have this time with my family and overall to be feeling pretty good right now. A special happy Mother’s Day to all the Mom’s out there! 😊

Until next time,

Quinton

Journal entry by Quinton Adkins

Hello everyone, 

I know a lot of you have been asking for an update, but we really didn't have much to update you on until now. I have met with a variety of doctors over the last 10 days, both in person and virtually, and I am starting Radiation treatment and Chemotherapy on Monday May 18. While I can't say that I am excited about the prospect have having a burned scalp and being poisoned from the inside out for the upcoming months, I am glad that treatment is moving forward and we are actively doing something. I didn't come this far to let cancer win. 

As far as everything else, physically, I am fine. I am playing with the kids and doing light yard work. Cognitively I am getting there. I still have a field vision cut and have no right peripheral vision, much to the amusement of Lisa when I bump into things because I couldn't see them. My processing and sequencing is getting better, its slow but accurate which is a good sign according to my therapist. We are also working on my short term memory and concentration and I think I am improving but if I am not I guess i wouldn't remember 😉 

Thank you for everyone who has reached out and offered to help us. We have received meals, gift cards, and even lots of offers to help with yard work. It's truly amazing to see how many people care about us and are willing to offer up their spare time to help us as we fight our way through this. I don't think I will ever find the right words toe express my appreciation and gratitude. 

Until next time, 

Quinton

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Journal entry by Quinton Adkins

Quinton, has been dealing with extreme dizziness and mood swings over the last year. We have visited multiple doctors to try and figure out what is going on. Towards the middle of December 2019 Quinton had an MRI of his brain done. It was discovered that he has two large tumors, in opposite hemispheres of the brain. They are fairly large (5cm and 4cm). Since then he has had more MRIs, CT scans, blood draws (19 vials so far) and a Spinal Tap. Quinton had his biopsy surgery on 1/29. Today, he had a meeting with the neurosurgeon to go over the results. It looks like Quinton has Cancer, more specifically invasive Glioblastoma. It’s rare, however, what makes this even rarer is that he has two of them in different locations. One of the things they check with this type of tumor is if this tumor is ‘streaking’. When it is streaking it means that it is spreading and invading other parts of the brain. Luckily, these tumors have not started streaking.

We have two options now. Option one is to surgically remove these tumors while they are still contained and follow it up with a year of chemotherapy and possibly radiation. Option two is to start with a year of chemotherapy and then surgically remove the tumors. Each tumor will have to be removed during a separate surgery, with a 3-4 day hospital stay and a 4-6 week recovery after each surgery. These surgeries will be very painful, as they will have to remove a large portion of skull to access the tumors. The tumor in the frontal region is in a location that is easy to get to, and our neurosurgeon feels comfortable removing it. This will be the first tumor to go and will be done at Holland Hospital. Quinton will be under general anesthesia for this procedure, and they will cut along his hairline and peel back his skin. The scar should blend into his hairline and be hardly noticeable after a while.

The second tumor is a different story. Its located towards the back of his brain. This is also where the motor region is. The motor region is located in a slightly different spot for every person; however, they are located in the same general region. They will have to do a specialty MRI to see exactly where Quinton’s motor region is and where the tumor Is in relation to that. If the tumor is far enough away from the motor region our surgeon feels comfortable performing this surgery. We are looking at two options for that then. One is that quinton would have to be awake during the surgery so they can check his motor function (speech, movement etc) during the procedure. This procedure would have to take place at UofM because Holland Hospital isn’t set up for this. Option two would be to videoconference a UofM specialist in, that strictly specializes in this area of the brain. One of the students would be in the OR and collect data and relay it to the specialist so they know if the motor region is safe. During this option Quinton could be asleep and this would take place at Holland Hospital.

However, if the MRI shows that the tumor is encroaching into the motor area or is very close to it, our surgeon may not want to touch it. If this turns out to be the case, we will have to see a specialized neurosurgeon (a specialty within a specialty) that only deals with performing surgery in this part of the brain. However, the recommended surgeon is located in California.

This is a lot of information and if you have made it this far, thank you. So, what are our next steps? Quinton and our surgeon both agreed that they would prefer to remove the tumors first, and then start chemotherapy. However, first Quinton will have to see a specialized Oncologist at UofM. She will meet with us, go ever everything and then present Quinton’s case to a team of research students. They will then collaborate with her, and together they will make a treatment recommendation. This may take a few weeks, so in the meantime its more waiting again. If they strongly recommend a year of chemotherapy first, we will have to rethink what we want to do.

There is no cure for this type of cancer, however it is treatable, and we caught it relatively early. If the tumor had started streaking Quinton would have less than 2 years left. I am kind of shell shocked by this news. We will need a lot of support in the upcoming months. Quinton will have to take FMLA leave after each surgery, and probably also during parts of the year for chemotherapy, so we will potentially be going for periods of time without income. Please keep an eye out for potential fundraisers and a GoFundMe donations page. We will also set up a meal train when the time comes and will need help with childcare. Thank you to everyone who has donated, prayed or helped in other ways so far. We truly appreciate it and a very thankful for the support.

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Quinton’s Story

Site created on February 17, 2020

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