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Help Ryker kick Brain Cancer’s Butt

$13,474 of $20,000 goal

Raised by 288 people in 10 months

Sara and Drayton welcomed their first healthy, sweetest, angelic baby boy June of this year. 

On Tuesday, August 14th, almost 3 month old Ryker Jay was hospitalized due to some unforeseen medical issues. At this time there are still a great deal of unknowns ahead, but their family do know that the medical bills from this will be high. There will be a lot of uncovered medical expenses that need to be paid out of pocket, including extensive medical needs and nursing care. To help ease the burden of this, we have set a goal of $20,000 to help them.

If you know either Sara or Drayton, you know how phenomenal, loving, compassionate, selflessness, amazing people they are. Our hearts are very heavy during these moments for them as first time parents and hope that we can help them every step of the way. 

At this time, The Doyle/Lutz family have all of the medical expertise they need. Please respect their privacy at this time until they are ready to speak out.






Ryker Jay was diagnosed with a cancerous brain tumor a couple days before he was 3 months old. It was absolutely heart breaking for us as parents. They can not remove the mass and he is too young for radiation. He is undergoing Chemotherapy once a week.. the plan he is on will be for 52 weeks. He had a feeding tube placed to eat and is battling to gain weight. The tumor has caused Diencephalic Syndrome. This is going to be a battle of a lifetime for our little man. Please pray for him. ❤️
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Ryker Jay is finally home. His sodium levels kept dropping but we are supplementing 3 times a day. He has many new medications.. two of which are seizure medication. He is so much happier now that he is home but he is still very sore. I’ve been letting him sleep as much as he wants.. it’s his time to heal. I haven’t gotten many smiles but I’m keeping faith my sweet little man will return to his goofy happy self. Tomorrow we go for an Oncology check up but he won’t receive Chemo until next week.
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Sorry its been so long since my last update on here. I started working again just 3 days a week because one income was slowly killing us. Ryker has an at home nurse that is with him 3 days a week for 12 hours shift.
Rykers health has been stable. He has been gaining weight and doing well with the Chemo. He has had 10 treatments of the Vinblastine. His blood counts have looked amazing also. Ryker had his first Thanksgiving with all of his family. I don’t know who was more exhausted that day.
But as a parent when your child is going through this disease.. it never stays calm for very long.
Tuesday the 18th, Ryker had an MRI done to check how the tumor is reacting to the Chemotherapy. Wednesday the 19th, we drove back up here for his usual Chemotherapy appointment. Ryker’s Neurosurgeon came in to his Oncology appointment and told me that Ryker needed a shunt placed in his brain. There is a lot more fluid around his brain than his last MRI in October. Hydrocephalus. We did not do Chemotherapy and Ryker went under at 215. I got a phone call around. 4 stating Ryker was recovering BUT they were unable to place the shunt so they placed a drain for time being. When they went in to place the shunt, bleeding occurred and through a clot in the ventricle.. that the shunt was most likely going to suck up and get clogged. The plan was to let him heal and go back in Friday and place the shunt.
I walked back to the recovery area and what I saw was horrific, Ryker was violently shaking, all limbs flailing, eyes jittery.. extremely uncomfortable. I told the nurse, there is something wrong with him and she stated everyone wakes up differently and I let her know.. that isn’t the case. Something is wrong. He had a fever of 104. He was placed on cooling mats and air blankets for 3 days. The bleeding of the brain caused everything to turn well angry including the tumor. The tumor swelled up. His body was unable to regulate his temperature because his tumor is on his Hypothalamus and that is how we regulate our temperature. The 3-4 days after his drain was terrifying. His temp was scary high, he started having seizures. I was heartbroken. His brain was so angry from the trauma. While he was “Neuro-storming”, I was given 3 options.. open brain surgery, IF he gets better try for a shunt again or hospice. I elected the shunt again. He is now able to regulate his temperature and hasn’t had a seizure in over 48 hours. The fluid from his brain has released so much pressure, he hasn’t vomited once. The Hydrocephalus was causing him to vomit. We spent our first Christmas in the hospital. It was very hard for me that day. Not how I wanted to spend it with him. Looks like we will be spending our first New Years here too. January 2nd, we are going to get another MRI and then hopefully place the shunt that day. Please keep him in your thoughts.
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Now that our crazy 4 different appointment week is over, I can give an update. He will have two days of rest Monday our usual physical therapy appointment with our therapist Juliette noticed he is improving in his motor skills. ❤️ Wednesday at his Chemo appointment the blood work showed his ANC (absolute neutrophil count) count was extremely low so they only gave him a partial dose of his Chemo. His count was 530. If they count goes below 500 he doesn’t receive a dose at all. If his count is between 500-750 they give a partial dose. It just goes to show how hard Chemo is on the body.. last week his count was 2200. They told me not to be surprised when it’s as low as his was, it has a harder time bouncing back and next week he may not get a dose at all. ❤️Thursday we saw the Neurosurgeon, he answered all of my questions about the atrophy that is happening to his brain and we reviewed all of his MRIs together.. he definitely put my mind at ease and he is by far my favorite Doctor there. They measured his head and it’s the same size since last hospitalization which tells them no pressure is occurring. Next MRI they will look at the ventricles again and if they feel they are scary close to closing, they will place a shunt in his brain. Friday we saw our Gastroenterologist, they decided his weight gain is good but still not ideal.. they’d like him to gain 20 grams a day and he is only gaining 11.. so we upped his feeds again. We can’t get higher than a 26 calorie intake for a baby his age because it will start affecting his kidneys. The tumor has caused Diencephalic Syndrome which is failure to thrive/severe emaciation, no matter the caloric intake. The only way to treat this is Chemotherapy. As you can see from the video he is still is happy as ever. Last night he got his FIRST real in a tub bath since August.. a company gave me something called Hydroseal so I could seal off his port. We have been newborn bathing carefully with soapy wet rags. He used to LOVE warm baths but last night was like bathing a cat Please keep him in your prayers. All of the support and love we have received is amazing. I am all about making childhood cancer aware
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Sorry it’s been so long for an update! Our life lately has been nothing be hectic... it’s hard to say where to start! Rykers Chemotherapy plan was Vincristine and Carboplatin but it was changed earlier this month due to a hospitalization. In the beginning of October we noticed his soft spot on his head felt swollen, we packed him in the car and headed up to the All Children’s Emergency room. They did a quick CT scan and noticed he had more fluid around his brain than normal .. they also noticed his ventricles were narrowed. Ventricles are the pathways where fluid can flow in and out freely and when they close off and the fluid can’t move that’s when brain damage occurs. The told us that night we were going to be admitted and they would like to do an MRI of his brain and spine under anesthesia the next morning. I was handed information about placing a shunt in his brain because it was looking like he has Hydrocephalus. Instantly feeling upset just like I did when I found out about the tumor. It’s just so much for this little guy to endure. I was kind of happy to see the MRI after being on Chemo for over a month, I was hoping for some good results.. well the MRI showed he wouldn’t need a shunt but the ventricles have narrowed compared to his initial MRI and unfortunately they noticed the tumor grew .. they said apart of it became necrotic (dead) but it did grow in size. So we were moved back to the oncology floor and waited to hear a new plan. They switched his Chemo to another drug much stronger called Vinblastine. He just received his 4th round of it today and within the next two weeks he’s will be admitted for another MRI. I met with a Neurologist last week and he said he noticed a lot of atrophy happening around his brain and they can’t figure out why.
Somewhat of good news though... his final pathology of the tumor came back from the Genetics team.. after 8 weeks. So he was at first diagnosed with an Anaplastic Astrocytoma grade 3 but come to find out he has a Juvenile Pilocytic Astrocytoma grade 1. But there are still a lot of unknowns with him... why didn’t the Carboplatin/Vincristine work.. the neurologist is confused by it and why is there so much atrophy? They said this Pilocytic seems more aggressive than what they usually deal with. I meet with my Neurosurgeon in St Pete tomorrow to discuss possibilities of a shunt in the future incase this MRI shows the ventricles are closing more.
He has been gaining weight.. little by little. He isn’t 2ft in length and very close to 10 lbs now. He will be 5 months old tomorrow ❤️ His personality through all of this has been amazing. I couldn’t ask for a stronger little man. He is still eating from his Gastro tube, we found out he has hypersensitivity to the back of his tongue and will instantly gag/puke.
The hospital bills, gas, life bills and formula hasn’t been easy on us.. especially living on one income and living so far from the hospital.
Please continue to pray for our sweet baby boy Ryker ❤️
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