Support Cristina's brain surgeries
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It's hard to imagine what the Dycus Family has been going through these past few weeks but even harder to think about what lies ahead. The last thing they should be worried about is how they will pay for all the medical procedures. Medical bills have already started stacking up and there is still another surgery ahead. My goal is to raise money to support the Dycus Family in their time of need. This fund will enable them to focus on Cristina and the difficult decisions ahead. As many of you know the Dycus Family is extremely giving and is a huge part of their community, schools, non-profit agency, and many fundraisers. They are very deserving and not alone in this fight. Any donation is appreciated no amount is too small. If you are unable to donate, the family would appreciate your prayers. Please share Cristina's story so that anyone with the means can be apart of her recovery. If you would like to learn more about Cristina's journey, her mom's post is below. 
"It’s been almost two weeks since Cristina had brain surgery. Two weeks ago tomorrow. Our baby had brain surgery. Take that in for a second. It’s something that’s hard for me to even say out loud. The front portion of her hair is shaved, there is a “wound” and stitches that are almost 5 inches across the top of her head.
A few weeks prior to all of this she started having what we were calling foggy brain. Not knowing what it actually was. She would be confused looking around or be blinking a lot and then be fine. We thought she was training too hard and her body was just exhausted. As most of you know she was running cross country and playing competitive soccer. Her two favorite things in life. We would later find out that the episodes she was having were “seizure activity”.
On the Monday after her Thanksgiving break she was at band rehearsal after school when I received a phone call from her school’s principal letting me know “She had a seizure and I should head down.” Like one minute later the school calls again. They say “The ambulance is on its way how long is it going to take you to get here?!” What changed?
I rush down there. Cristina was laying on the floor kinda groggy not knowing what was happening. Her teacher described it to me as a “grand mal” seizure. It lasted about 5 minutes. She stiffened, fell out of her chair, had trouble breathing and was completely out of it. The paramedics arrived and suggested I let them take her a bit farther to Loma Linda Children’s Hospital because being a children’s hospital she would get better care than the local hospital. I agreed to this.
Upon arrival at Loma Linda they took us to a room in the ER, hooked her up the monitors and left us to sit to make sure she didn’t have another seizure. They did no testing. No CT scan, no EEG, no MRI. They did draw her blood to test per Joe’s request but that’s it. The doctor told us that most likely she just developed a “seizure condition” and would need to be medicated to control it. Not forever though, after about two years she would probably grow out if it and we could ween her off. How amazing this doctor could diagnose this just by looking at her. ♀️ They set up an appointment with a primary care doctor, told me to call first thing in the morning to get an appointment with the neurologist, and sent us home with a prescription for an anti seizure medication.
In the morning I called the number she had given me to make our appointment with neurology. The lady that answered the phone said that things don’t work that way. You can’t just call here and get an appointment with neurology. If you want an appointment go see a primary care doctor, wait a few weeks for a referral, then try again to get an appointment. Seriously! WTF lady!
I explained I have “referral” from the ER doctor. She says that doesn’t change anything. I asked her if I could call the ER and have them set up the appointment? She chuckled and said call whoever you want, that will not change anything. Again WTF?! They don’t care what caused a sudden seizure? Do they really believe the best thing to do is medicate a child and let her sit for weeks not knowing what the cause is.
This was unacceptable to us. We were lost. Whatever was happening to our baby seemed to be progressing quickly. How do we know if the medication will stop the seizures? What if it doesn’t? What caused this suddenly start occurring?
Knowing that we couldn’t sit around waiting for something else to happen Joe used good ‘ol google to find a neurologist out in Orange County that had an EEG machine and would let us pay for a test. We did. The test was mostly “normal” and he said based on that he would rule out epilepsy. His suggestion was for us to do an MRI next. He was extremely helpful and got us into an imaging center to get the MRI same day. The technician that did the MRI printed her notes and faxed them straight to him. He called us and let us know they saw lesions on her brain and that we would need to do some more testing to find out how “bad” it was. This was on a Tuesday. The day after her seizure. We made so much progress in one day. Since we paid cash for everything we had the results from both tests in hand.
Next the doctor wanted us to go visit a pediatric neurologist. We asked for his recommendation. He gave us a name/number. We set up an appointment, they set our appointment for the following Monday.
Come Saturday the actual images of Cristina’s brain had been sent to the doctor that did the EEG. He had a chance to review them. He called and said “It’s worse than I thought. Don’t worry too much but if you see any change in her rush her to emergency and demand a CT scan. If they won’t do it have them call me directly.” How in the hell are we not supposed to worry.
On Monday we meet with the new doctor. He explained that she has Cavernous Malformations. [Vascular malformations are localized collections of blood vessels that are abnormal in structure or number, lead to altered blood flow, and are not cancerous.] This is something she was born with and is most likely hereditary.
She has three of them in her brain. One is small and there is no need to worry about it right now. The other two however have grown and that’s what is causing problems. One of them has recently bleed and is what caused the seizure. He explained a lot about them but he doesn’t want to speak for what we can do about them. He wants us to go see a Neurosurgeon for that. He has his assistant call and request a same day appointment. She says they can’t get us in. The doctor leaves the room, comes back 2 minutes later and says we have an appointment in 1 hour with a neurosurgeon and we better start heading to his office.
Now remember we have the images from her MRI on a disk in hand. This doctor takes us in, pulls up the images on his computer, looks for 2 minutes, turns around and says “We are gonna fix this tomorrow morning.” He planned on removing the malformation from the left side and then in about 6 weeks remove the one on the right because it is a little more difficult.
We didn’t ask a lot of questions. I was in shock. Not that long ago Cristina was playing soccer, running cross country. Now she was about to have surgery on her brain. I didn’t know what to think. What I did know was I had faith in this doctor. He was confident, I was confident (or hopeful at minimum ).
We went across the street from his office to CHOC Children’s Hospital in Orange. They admitted her and we stayed overnight for them to monitor her and do some testing. Tuesday morning the day of the surgery we had a whole gang of family there to support us. We didn’t let a lot of people know what was going on but we were so grateful for those who were able to be there.
The surgery was shorter than they originally told me. It was successful. They removed one of her malformations. We were shown a picture of it, it looked scary. She recovered surprisingly quickly. Her biggest fear going into it was the pain after but this kid told the nurses to stop giving her pain meds within 24 hours.
After just a few days of rest it’s hard to keep her down. She is such an active kid. We have been overwhelmed with messages and prayers and presents. It looks like Christmas already came at our house. We appreciate everyone’s love and support thru this.
Now on to what’s next. The one he removed was the “easier” of the two. It was closer to the surface. Now when I say it’s easier that is not to lessen the miracle he has already performed.
The one that is still in there is deeper into her brain. This makes the surgery a lot more difficult and therefore higher risk. The surgeon wants to wait till we meet in January to discuss our options, weigh the risks. The unknown is difficult for me. I don’t know that knowing more would be any better though. Either way she needs to spend the next 4 weeks recovering. That’s what’s important now.
We appreciate each and every person that has sent prayers, love, support and thoughts."
"It’s been almost two weeks since Cristina had brain surgery. Two weeks ago tomorrow. Our baby had brain surgery. Take that in for a second. It’s something that’s hard for me to even say out loud. The front portion of her hair is shaved, there is a “wound” and stitches that are almost 5 inches across the top of her head.
A few weeks prior to all of this she started having what we were calling foggy brain. Not knowing what it actually was. She would be confused looking around or be blinking a lot and then be fine. We thought she was training too hard and her body was just exhausted. As most of you know she was running cross country and playing competitive soccer. Her two favorite things in life. We would later find out that the episodes she was having were “seizure activity”.
On the Monday after her Thanksgiving break she was at band rehearsal after school when I received a phone call from her school’s principal letting me know “She had a seizure and I should head down.” Like one minute later the school calls again. They say “The ambulance is on its way how long is it going to take you to get here?!” What changed?
I rush down there. Cristina was laying on the floor kinda groggy not knowing what was happening. Her teacher described it to me as a “grand mal” seizure. It lasted about 5 minutes. She stiffened, fell out of her chair, had trouble breathing and was completely out of it. The paramedics arrived and suggested I let them take her a bit farther to Loma Linda Children’s Hospital because being a children’s hospital she would get better care than the local hospital. I agreed to this.
Upon arrival at Loma Linda they took us to a room in the ER, hooked her up the monitors and left us to sit to make sure she didn’t have another seizure. They did no testing. No CT scan, no EEG, no MRI. They did draw her blood to test per Joe’s request but that’s it. The doctor told us that most likely she just developed a “seizure condition” and would need to be medicated to control it. Not forever though, after about two years she would probably grow out if it and we could ween her off. How amazing this doctor could diagnose this just by looking at her. ♀️ They set up an appointment with a primary care doctor, told me to call first thing in the morning to get an appointment with the neurologist, and sent us home with a prescription for an anti seizure medication.
In the morning I called the number she had given me to make our appointment with neurology. The lady that answered the phone said that things don’t work that way. You can’t just call here and get an appointment with neurology. If you want an appointment go see a primary care doctor, wait a few weeks for a referral, then try again to get an appointment. Seriously! WTF lady!
I explained I have “referral” from the ER doctor. She says that doesn’t change anything. I asked her if I could call the ER and have them set up the appointment? She chuckled and said call whoever you want, that will not change anything. Again WTF?! They don’t care what caused a sudden seizure? Do they really believe the best thing to do is medicate a child and let her sit for weeks not knowing what the cause is.
This was unacceptable to us. We were lost. Whatever was happening to our baby seemed to be progressing quickly. How do we know if the medication will stop the seizures? What if it doesn’t? What caused this suddenly start occurring?
Knowing that we couldn’t sit around waiting for something else to happen Joe used good ‘ol google to find a neurologist out in Orange County that had an EEG machine and would let us pay for a test. We did. The test was mostly “normal” and he said based on that he would rule out epilepsy. His suggestion was for us to do an MRI next. He was extremely helpful and got us into an imaging center to get the MRI same day. The technician that did the MRI printed her notes and faxed them straight to him. He called us and let us know they saw lesions on her brain and that we would need to do some more testing to find out how “bad” it was. This was on a Tuesday. The day after her seizure. We made so much progress in one day. Since we paid cash for everything we had the results from both tests in hand.
Next the doctor wanted us to go visit a pediatric neurologist. We asked for his recommendation. He gave us a name/number. We set up an appointment, they set our appointment for the following Monday.
Come Saturday the actual images of Cristina’s brain had been sent to the doctor that did the EEG. He had a chance to review them. He called and said “It’s worse than I thought. Don’t worry too much but if you see any change in her rush her to emergency and demand a CT scan. If they won’t do it have them call me directly.” How in the hell are we not supposed to worry.
On Monday we meet with the new doctor. He explained that she has Cavernous Malformations. [Vascular malformations are localized collections of blood vessels that are abnormal in structure or number, lead to altered blood flow, and are not cancerous.] This is something she was born with and is most likely hereditary.
She has three of them in her brain. One is small and there is no need to worry about it right now. The other two however have grown and that’s what is causing problems. One of them has recently bleed and is what caused the seizure. He explained a lot about them but he doesn’t want to speak for what we can do about them. He wants us to go see a Neurosurgeon for that. He has his assistant call and request a same day appointment. She says they can’t get us in. The doctor leaves the room, comes back 2 minutes later and says we have an appointment in 1 hour with a neurosurgeon and we better start heading to his office.
Now remember we have the images from her MRI on a disk in hand. This doctor takes us in, pulls up the images on his computer, looks for 2 minutes, turns around and says “We are gonna fix this tomorrow morning.” He planned on removing the malformation from the left side and then in about 6 weeks remove the one on the right because it is a little more difficult.
We didn’t ask a lot of questions. I was in shock. Not that long ago Cristina was playing soccer, running cross country. Now she was about to have surgery on her brain. I didn’t know what to think. What I did know was I had faith in this doctor. He was confident, I was confident (or hopeful at minimum ).
We went across the street from his office to CHOC Children’s Hospital in Orange. They admitted her and we stayed overnight for them to monitor her and do some testing. Tuesday morning the day of the surgery we had a whole gang of family there to support us. We didn’t let a lot of people know what was going on but we were so grateful for those who were able to be there.
The surgery was shorter than they originally told me. It was successful. They removed one of her malformations. We were shown a picture of it, it looked scary. She recovered surprisingly quickly. Her biggest fear going into it was the pain after but this kid told the nurses to stop giving her pain meds within 24 hours.
After just a few days of rest it’s hard to keep her down. She is such an active kid. We have been overwhelmed with messages and prayers and presents. It looks like Christmas already came at our house. We appreciate everyone’s love and support thru this.
Now on to what’s next. The one he removed was the “easier” of the two. It was closer to the surface. Now when I say it’s easier that is not to lessen the miracle he has already performed.
The one that is still in there is deeper into her brain. This makes the surgery a lot more difficult and therefore higher risk. The surgeon wants to wait till we meet in January to discuss our options, weigh the risks. The unknown is difficult for me. I don’t know that knowing more would be any better though. Either way she needs to spend the next 4 weeks recovering. That’s what’s important now.
We appreciate each and every person that has sent prayers, love, support and thoughts."
Organizer and beneficiary
Stephanie Poch
Organizer
Beaumont, CA
Tonya Dycus
Beneficiary