Support the Lawsons as They Fight Dakota's Brain Tumor

I’m Emily, a friend of Zeke and Elyse Lawson. Baby Dakota was born March 16th, 2024. From birth to about 5 months old, his health and development were normal. At 5 months old, Elyse and Zeke noticed that Dakota's eyes were darting back and forth. They thought maybe it was part of his visual development, but they brought it up to the pediatrician at Dakota's next check-up. Long story short, Dakota was scheduled for an MRI on December 20th, just to be safe.

After the MRI, Zeke and Elyse were informed that Dakota has a brain tumor. This is where Elyse's "Dakota Updates" on Facebook began. I will add those below and I will continue to add those as she posts. To summarize, there has since been a biopsy done on the tumor and it appears to be non-cancerous (full report to come) and likely non-fatal. The main concerns are for Dakota's vision and pituitary gland due to the placement of the tumor and its continuous growth. He is having a port installed into his chest through which two types chemotherapy will start. This will cause Dakota to become immunocompromised, which is another major concern. Chemo starts on January 3rd.

As you can imagine, this has been extremely scary and stressful for Zeke, Elyse, and Demarion. Elyse will be taking unpaid time off from her job to be with Dakota and stay-at-home dad, Zeke. Zeke and Elyse are both focused on caring well for big brother, Demarion, too. Their second vehicle has called it quits recently. The insurance company is declining to cover Dakota's MRI. Add in gas, parking, meals, and other wants and needs, and they have a lot of stress on their plate.

I’m here to ask you to help financially support the Lawson family at this time. These funds will cover lost wages, medical bills, meals, travel expenses, and hopefully the full cost of a new (used) car. Please consider donating any amount, even $1, to show them your support and alleviate their stress in this challenging season. Thank you in advance.

Elyse's Dakota Updates, starting with the very first one:

12/21/24:

Hello friends. I have some difficult news to share. Yesterday, we discovered that Dakota has a large brain tumor. We will meet with a pediatric neurologist on Monday or Tuesday to determine next steps. We are still trying to process this news, and feeling devastated and scared. Please keep our family in your thoughts and prayers this holiday season, especially for our sweet boys. ❤️

12/24/24:

Today we will meet with the pediatric neurologist and Dakota will have another MRI of his entire spine to determine if there are any other tumors present. We are hoping for a clean scan with no other tumors. Last time Dakota got an MRI, he had a hard time breathing when coming off of the anesthesia, so we are also hoping for that to not happen again. He is currently pretty grumpy due to having to fast but we are hopeful for good news and thankful for capable doctors today. Merry Christmas yall. ❤️

12/25/24:

we got to spend Dakota’s first Christmas at home together as a family today and that meant the world to us. ❤️ Tomorrow, Dakota has a CT scan and a biopsy. He will then be admitted to the hospital at least overnight (potentially longer) to recover from the biopsy. For the biopsy, they will drill a small hole in his skull and use a tiny needle to extract a very small piece of the tumor. The purpose of the biopsy is to determine exactly what type of tumor we are dealing with. The three major risks of the biopsy include not getting enough tissue to properly determine the type of tumor resulting in the need for another biopsy, bleeding, and infection. We are hoping none of these complications occur and that Dakota has a relatively pain-free and quick recovery from the procedure. Merry Christmas everyone!

12/26/24:

CT scan and biopsy went well today! They were able to get nine pieces of the tumor for pathology to review which is great! It should take about a week to get those results. He will be in the ICU overnight for observation and we anticipate being able to discharge to home tomorrow, barring any complications. He is still sleeping now but should be awake soon. We have been so grateful to every member of his care team taking such great care of us all. Doctors, nurses, and social workers are angels on earth. ❤️

12/27/24:

we are home! He had to be woken up every hour last night for neuro checks so he and I both knocked out for about 3 hours as soon as we got home. We are still waiting for the full pathology report (anticipated to come in about a week), but the initial review looks like this is not cancer! They currently believe it is a low-grade glioma, which is great because it is very treatable.

The treatment plan could change based on what we find with the radiology results but as it stands, Dakota will start chemotherapy next week. He will be getting a port installed to be used for chemotherapy, pulling labs, and sedation medication. They will be giving him two different types of chemo meds. One he will get once per month for 6-12 months which will target the tumor itself and the second he will get twice per month for 3 months that targets the blood vessels feeding the tumor. The main concerns with chemotherapy are that he will become immune compromised and there is a potential for hearing loss.

Currently, the biggest concern with the tumor is for his vision as the tumor is on his optic nerve. He has an eye exam scheduled for Monday and the neurologist today told us we need to emotionally prepare ourselves for the results. It is likely that he is close to blind and will stay this way or become fully blind before they are able to get rid of the tumor. The tumor is also sitting on his pituitary gland which could cause hormone issues that can mess with his thyroid, growth, etc. His hormone levels and eyes will be checked regularly throughout this process. There will also be routine MRIs and hearing checks to monitor the tumor as well as the potential hearing loss side effect.

Today, the neurologist told us that the treatment plan goal is to avoid any further neurological damage and learn how to live with the neuological damage he currently has.

We are feeling good and so, so thankful for the care team Dakota has as well as the community of support we have received. I’m sure I missed a few things in this update so if you have any questions feel free to ask. We have some friends who have offered to set up a caring bridge / go fund me (yay for insurance denying an MRI because it “isn’t medically necessary” for my child with a f’ing brain tumor ) so more to come on that!

Thank you all for the love and support. If you have read this blog-sized Facebook status, way to go!

12/30/24:

Dakota had his eye appointment today and we got FANTASTIC news. It looks like he currently has pretty minor vision loss. This is a HUGE win and we are so excited! They will continue to check his vision every month throughout the chemotherapy process and it could worsen but we are hoping it does not. We are still waiting on pathology results from the biopsy, so no updates on that front yet.

Also, reflecting today on how proud I am of my strong baby boy. He has had enough poking and proding at appointments with strangers to last a lifetime in the past week and he continues to be a happy little boy. I am astonished at how well he is doing.

12/31/24:

Unfortunately, Dakota has started vomiting and is being extremely fussy. This means that the pressure in his skull has increased due to the tumor and fluid buildups from the tumor. We took him to the hospital today and they have given us some medications that will hopefully decrease the swelling. We will be checking in with the doctors regularly via phone between now and Friday when Dakota has his port installed and starts chemo.

1/2/25:

it’s been a rough day. He has been really fussy most of the day and I’m not 100% sure why. I think it’s because he has increased appetite from the tumor and the steroids he is on so he’s constantly hungry. He also slept a lot more than usual today, which worries me. We were up together most of the night last night (one of the few cons of breastfeeding is that if he’s up, I’m up feeding him). He has to fast tonight due to going under anesthesia in the morning, so I’m anxious about how the night ahead will go. Tomorrow, he will get his port installed and start his first round of chemo. He will then be admitted to the hospital overnight for observation.

I’ll be honest, yall. I’m exhausted and anxious today. Please send extra love & prayers our way.

1/3/25:

Dakota had his port placed and the procedure went well with no complications. He also had his first round of chemo. We are at the hospital for the night and are hoping to go home tomorrow. He is in a lot of pain.

1/4/25:

Unfortuantely, Dakota’s sodium levels have been low since yesterday morning. This is likely due to the tumor pressing on his patuitary gland causing hormone issues. An endocrinologist has been added to his care team. They have decided to keep him in the hospital for additional observation until the sodium levels go back to normal (at least overnight). Zeke will be spending the night in the hospital with Dakota tonight so I can go home to be with Demarion and get some sleep. Please be thinking of Zeke as it is his birthday tomorrow! Spending the day in the hospital is not how we pictured his birthday going.

Dakota seems to still be in a significant amount of pain and is not feeling well today. We and his care team are doing our best to keep him as comfortable as possible.

Huge shout out to my parents (Isabel George & Marty Moreno) and brother (who hates social media ) for helping keep Demarion occupied during the day yesterday and today while Zeke and I are taking care of Dakota. And thank you to Aliza for bringing us food yesterday. So many more people to thank as well - we have been so blessed by our community. I promise I’ll get some thank you cards in the mail soon.

1/7/25:

We were able to return home from the hospital on Sunday afternoon (just in time to watch the lions beat the vikes ). He is feeling much better but is still being fussy overall (especially overnight when there aren’t a lot of things to distract him). We had an appointment with his whole care team today. His sodium levels are still low, even with medication. His hemoglobin is also low and if it drops much more, he will need a blood transfusion. For now, the plan is to keep an eye on his levels and do more intervention if needed. Fortunately, this means there are no big concerns at this time. Unfortunately, it means we will be in the hospital clinic a lot more to get labs drawn until his levels get back to normal, and poor Kota has to be poked more.

We had a lengthy discussion with his neurologist today regarding the results of the biopsy, which determined the specific type of glioma we are dealing with. This type of glioma is in the “increased risk” category (kind of like middle-range risk). It is very untilikely to be fatal but does have a high chance of returning. Dakota will have to get routine MRIs for the rest of his life to monitor. Hopefully his insurance determines this is “medically necessary” ‍♀️

We are feeling very tired, but very hopeful.

1/11/25:

things have been tough lately. He has had some sort of upper respiratory infection, which is to be expected with his weakened immune system. He has been very fussy and not sleeping well the past few days. We are tired. He has an appointment on Wednesday to check his hemoglobin and sodium levels again. If his hemoglobin levels are too low, they will do a blood transfusion. He also has an intake for Physical Therapy on Wednesday to help him meet age-appropriate milestones like crawling. Please be thinking of him / us, and praying we all get some more sleep tonight.

1/16:

Dakota had an appointment yesterday to check his labs and also a PT intake. All of his levels are looking good (hemoglobin, sodium, and blood cell count) which is great and meant he didn’t need a transfusion! His PT intake didn’t go so well because he was raging the whole time so they didn’t get to really assess him properly. They shared some concerns that there is a buildup of fluid in his tummy due to medications he is taking which makes it uncomfortable for him to move so he is doing it less (we have observed this as well). I made a referral to an in-home PT program through our school district and he will continue to do PT at the hospital weekly.

Overall, Dakota is really struggling. We are guessing this is due to the steroid he is on which makes him angry, uncomfortable, and very hungry. We are up at least once an hour throughout the night. During the days, if he isn’t sleeping or eating, he is usually crying.

Mentally and emotionally, we are drained. It is hard to listen to a baby crying 24/7 and it is hard to not be able to help him. I miss my smiley happy boy. We barely see him smile anymore, and I miss the sound of his laugh. Port access days (like yesterday) are especially hard because we have to hold our screaming baby down while the doctor puts a needle in his chest. This journey is something I wouldn’t wish on anyone.

We are hoping things get better when he starts his second chemo med next week and we can stop the steroid.

1/19:

To-Do List for when you find out your nine-month-old has a brain tumor

cry / call your parents / hyperventilate / call your best friend / hear the doctor say “are you sitting down?” / disassociate / grieve / think this only happens to other people / google “glioma” / tell your oldest son / cry / scream in the car / scream in the shower / clean your house / start FMLA paperwork / swear / schedule appointments /  pack a hospital bag / cry / plan Christmas at the hospital / take the tree down / feel guilty for going to the gym / wash your hair / feel guilty for going to work /  sign your oldest’s permission slip / swear / scream / make a PT referral / appeal the insurance denial / spend every second afraid it will be your baby’s last / watch your baby cry / watch your baby breathe / scream / cry / swear /

hope / hope / hope

1/21:

Some good news! Dakota started Avastin today. This is the second type of chemo med he is taking which targets the blood vessels feeding the brain tumor. It is given to him through the port in his chest and he will get it every other week. It takes about 90 minutes to administer and today he slept almost the entire time he was hooked up to the IV which was such a blessing for us as he continues to be awake almost all night every night. The biggest win of the day is that the Avastin will take over the job of the steroid which means we can start weaning him off of the steroid! We and his care team are hopeful that the steroid is the cause of most of his fussiness. I am really hoping to hear him laugh again soon. I miss my smiley boy.

1/28:

Dakota is almost completely weaned off the steroid and he is doing SO much better. His energy levels and mood have improved tremendously. He has started smiling and cooing again and we got to hear his laugh again today. It is so nice to have my happy baby back. Now time to try to get him to sleep for more than an hour at a time overnight.

Zeke has been getting some good videos of his progress these past few days - I’ll try to post some later! [on facebook]

2/4:

Haven’t posted one of these in a minute. Things have settled down and we have gotten into a routine. We feel like the hospital is our second house at this point . Dakota had his second round of chemotherapy today. He received both types of chemo meds and it took about 7 hours. We are home now and he is having a rough time - seems to be feeling pretty nauseous. Hoping he feels better in the coming days. He had an intake with Help Me Grow (an in-home early intervention program) last week and they said he has some cognitive delays on top of the motor delays we were already aware of. We will have a care team meeting with them soon to determine the course of treatment moving forward. He continues to have physical therapy weekly and still isn’t sleeping much. He has an eye appointment coming up on Valentine’s Day and a hearing check and MRI at the end of the month. Hoping for good results and that the tumor is starting to shrink.