Deck's Clan
Donation protected
On May 7th our families world got turned upside down. About three weeks ago we started seeing some weird things going on with Declan. He was becoming more clingy and asking for naps, which our wild child never asks for. He also started having short episodes of discomfort, pain, disorientation and lethargy. It started with one episode, then every other day, till all of a sudden it was happening every few hours. After weeks of calls and visits to the pediatrician our parental instinct said this is not just GI upset. Our poor baby was suffering and no one knew why.
Monday, May 6th: We brought him to Children’s Hospital Boston for a full work up through the ER. He had already had four events that morning. They watched videos that we had of the episodes and decided to place Declan on EEG monitoring. It was determined that Declan was having seizures and has Epilepsy. All routine lab work was normal. They started him on an anti seizure medication and he stopped having seizures right away. They decided to place him in observation for a night to see if the medication would continue to stop the seizures. They also planned to do an MRI the next day so we would stay overnight and go home after the MRI the next day. Sounded like a great plan to us.
Tuesday, May 7th: Waking with optimism, the prevailing thought by all involved was that we had a MRI to get through and we would be on our way home as the seizure medicine was working beautifully. While in the recovery room three doctors approached us. We stood for the information and they asked if they could take us to a separate room. My heart dropped so far into my gut. As we walked out of the recovery room I looked at Jeremy and said “This is not good.” I’ve never in my life wished I had been so wrong about being so right.
The doctors shut the door and the first thing they said was “I’m sorry. We did see a large tumor on his MRI.” I looked at Jeremy and we made eye contact and then everything is a blur. I heard the word tumor multiple times, biopsy a few times, and I honestly can tell you much more that went on in that room. What I do know is that was the moment the universe strapped me into a rollercoaster of negative and optimistic, over and over again.
That night we were informed that they wanted to do a second MRI to make sure that none of the tumor has effected his spine/abdomen.
Wednesday, May 8th: We woke with the thought that we need to be positive today about the spine MRI and we were. We had to have another day of a starving 3 year old to wait for an MRI and more anesthesia (which Declan does not react well to). Eventually we made it back up to our room and the neurology team all came in and let us know that the spine MRI was clean. This was a tiny sign of relief knowing we are dealing with one mass. We met with neurosurgery that afternoon and planned for a biopsy the next day. Declan’s biopsy needs to be done as a craniotomy instead of a hole and needle biopsy due to the intricacies of the mass. He would require an ICU stay and then a few nights on the neurology floor. We mentally prepared and were encouraged to get some more answers. Fast forward to 7pm and Declan had a sudden temp of 103 and vomited. Within minutes Nana called to let us know that Teagan was at home with a fever and vomiting.
Thursday, May 9th: They monitored him overnight and in the morning the neurosurgeon determined that it would be too risky to do the surgery while he has an active virus. We all were on the same page and want Declan in optimal health for brain surgery.
Surgery is now Monday, May 20th.
Declan has appointments all next week. They let us go home until the day of surgery.
Today: We are back home and trying to resume some type of normalcy until the surgery, which is impossible.
What we know:
Declan has a large mass/lesion in his brain that may be a tumor. It is causing neurological changes, starting with the seizures. They believe it has been there his whole life and slow growing but it starting to present symptoms so it’s a good thing we brought him in and figured it out. The lesion could be a tumor, a congenital malformation, maybe something else, we just won’t know until the pathology report comes back. We know that the tumor can not be removed due to its complexity and it would leave him functionless. Benign or not they may have to treat with chemo, radiation, or another neurological treatment, again, we won’t know until we have more information.
This is very very rare for a 3 year old. It has peaked interest in many neurologists and neurosurgeons, and they are teaming up together to figure out what it is and a solid plan of action, but back up plans as well.
Declan is in good spirits today. Running around like the wild child he is. He is playing with Teagan and bossing the whole house around... baseline.
Our family is distraught, in shock, scared, yet remaining optimistic and we ask that you do too. We will continue to update as we get more info. Declan has a pretty big fan base so I know if we all work as a team we will conquer this horrific setback. And it is going to be a major setback emotionally and financially, but all we really care about right now is being able to spend every minute we can with our boys, our family, and our friends. We do not have short term disability, and I will not be able to work because one of us has to be by his side at all times and we have so many upcoming appointments. And honestly, neither us or the doctors foresee this as a short term thing. We are strong and have proven to get through challenges in the past. And Declan is a strong 3 year old rock star who is gonna kick this things ass.
Monday, May 6th: We brought him to Children’s Hospital Boston for a full work up through the ER. He had already had four events that morning. They watched videos that we had of the episodes and decided to place Declan on EEG monitoring. It was determined that Declan was having seizures and has Epilepsy. All routine lab work was normal. They started him on an anti seizure medication and he stopped having seizures right away. They decided to place him in observation for a night to see if the medication would continue to stop the seizures. They also planned to do an MRI the next day so we would stay overnight and go home after the MRI the next day. Sounded like a great plan to us.
Tuesday, May 7th: Waking with optimism, the prevailing thought by all involved was that we had a MRI to get through and we would be on our way home as the seizure medicine was working beautifully. While in the recovery room three doctors approached us. We stood for the information and they asked if they could take us to a separate room. My heart dropped so far into my gut. As we walked out of the recovery room I looked at Jeremy and said “This is not good.” I’ve never in my life wished I had been so wrong about being so right.
The doctors shut the door and the first thing they said was “I’m sorry. We did see a large tumor on his MRI.” I looked at Jeremy and we made eye contact and then everything is a blur. I heard the word tumor multiple times, biopsy a few times, and I honestly can tell you much more that went on in that room. What I do know is that was the moment the universe strapped me into a rollercoaster of negative and optimistic, over and over again.
That night we were informed that they wanted to do a second MRI to make sure that none of the tumor has effected his spine/abdomen.
Wednesday, May 8th: We woke with the thought that we need to be positive today about the spine MRI and we were. We had to have another day of a starving 3 year old to wait for an MRI and more anesthesia (which Declan does not react well to). Eventually we made it back up to our room and the neurology team all came in and let us know that the spine MRI was clean. This was a tiny sign of relief knowing we are dealing with one mass. We met with neurosurgery that afternoon and planned for a biopsy the next day. Declan’s biopsy needs to be done as a craniotomy instead of a hole and needle biopsy due to the intricacies of the mass. He would require an ICU stay and then a few nights on the neurology floor. We mentally prepared and were encouraged to get some more answers. Fast forward to 7pm and Declan had a sudden temp of 103 and vomited. Within minutes Nana called to let us know that Teagan was at home with a fever and vomiting.
Thursday, May 9th: They monitored him overnight and in the morning the neurosurgeon determined that it would be too risky to do the surgery while he has an active virus. We all were on the same page and want Declan in optimal health for brain surgery.
Surgery is now Monday, May 20th.
Declan has appointments all next week. They let us go home until the day of surgery.
Today: We are back home and trying to resume some type of normalcy until the surgery, which is impossible.
What we know:
Declan has a large mass/lesion in his brain that may be a tumor. It is causing neurological changes, starting with the seizures. They believe it has been there his whole life and slow growing but it starting to present symptoms so it’s a good thing we brought him in and figured it out. The lesion could be a tumor, a congenital malformation, maybe something else, we just won’t know until the pathology report comes back. We know that the tumor can not be removed due to its complexity and it would leave him functionless. Benign or not they may have to treat with chemo, radiation, or another neurological treatment, again, we won’t know until we have more information.
This is very very rare for a 3 year old. It has peaked interest in many neurologists and neurosurgeons, and they are teaming up together to figure out what it is and a solid plan of action, but back up plans as well.
Declan is in good spirits today. Running around like the wild child he is. He is playing with Teagan and bossing the whole house around... baseline.
Our family is distraught, in shock, scared, yet remaining optimistic and we ask that you do too. We will continue to update as we get more info. Declan has a pretty big fan base so I know if we all work as a team we will conquer this horrific setback. And it is going to be a major setback emotionally and financially, but all we really care about right now is being able to spend every minute we can with our boys, our family, and our friends. We do not have short term disability, and I will not be able to work because one of us has to be by his side at all times and we have so many upcoming appointments. And honestly, neither us or the doctors foresee this as a short term thing. We are strong and have proven to get through challenges in the past. And Declan is a strong 3 year old rock star who is gonna kick this things ass.
Organizer and beneficiary
Kate Gray
Organizer
Holliston, MA
Jeremy Vail
Beneficiary
