Supporting Gavin Nielsen and Family
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Gavin Nielsen is a two year old little boy, loved by many family and friends near and far. Read below about what Gavin is and will be going through after his diagnosis of a brain stem tumor-DIPG. Please support Gavin and his parents Nathaniel and Ashlee as there are many unforeseen and upcoming expenses that we don't want Ashlee and Nate to have to worry about including loss of work, vehicle needs, potential clinical trials and so much more. Let's support them so their focus can be on Gavin 100%. Along with any donation, send all your thoughts, prayers and love to this amazing family.
From Ashlee and Nate:
"It is with a broken heart and through bouts of tears that we must let everyone know that our 2 year old son Gavin has been given a terminal cancer diagnosis. A brain stem tumor classified as DIPG (DMG of the Pons) with a 0% survival rate and median life expectancy of 9 - 11 months. We need you all to understand at least that, before we explain further.
We will start from the beginning...Starting earlier this year, close to the new year, we noticed that Gavin appeared to go cross eyed at times. This ended up being 6th Nerve Palsy. We got in to see an ophthalmologist pretty quickly for fear of long term affects on his sight. The ophthalmologist had seen this many times before and it had always corrected itself, but advised on an MRI to be safe.
Fast forward to February 18th. Gavin's MRI date. We were scheduled for a 10am MRI (under anesthesia) at Seattle Children's Bellevue location but we mistakenly gave him jello that morning so it had to be rescheduled. Thankfully they were able to squeeze us in, same day, at Seattle Children's main campus. This is where we got the worst news of our lives.
Ashlee was inside the waiting room for Gavin to come out of the MRI and Nate was in the car. Ashlee called Nate in from the car, as the Dr. wanted to talk to us about the results. Nate knew immediately it was bad news. They even had one of the nurses waiting for Nate at the security desk as he walked in, and his heart shattered inside. Nate felt like he wanted to collapse right there and cry himself to sleep and wake up from the nightmare he knew was coming. Ashlee felt the same way as soon as they asked her to call Nate.
Once we both got in the waiting room they brought in Gavin who was not yet awake. This is where they revealed to us that Gavin has a brain stem tumor (DIPG - DMG). They immediately got Gavin in for a brain biopsy that night (amazing) so they could confirm and narrow down the type and better plan a treatment approach. Gavin did well and we were back home by Friday evening.
After many appointments and phone calls coordinating specialists and care, we are where we are at today (2/26). Day #2 of Radiation treatment at the UW Medical Center is done and about 5.5 weeks left of this. Gavin had a port surgically implanted on Tuesday (2/23) (like father like son) so that we don't have to worry about his little veins. He most likely will also undergo a form of chemotherapy as well.
At this time we are planning on a long road ahead. There are clinical trials on the horizon and some that give us hope for Gavin's future. Time is our ally and the longer Gavin lives, the greater the chance a cure is discovered via a clinical trial. We are extremely hopeful Gavin is one of the first to beat this.
We ask for your understanding and grace. We need to be picky with immediate and future needs and asks of support as we need to return to work and continue to care for Gavin. We will need your support more than ever before if Gavin is unable to pull through.
We have to take this one day and one week at a time and concentrate on the here and now. Everyday with Gavin is an absolute blessing that we can never get back and we are going to be trying to treat it as such, but we also have to approach it as if he will grow older which is doubly difficult for us. We need to teach him, guide him, and educate him. We are overwhelmed with fear, love, anxiousness, and sadness. Gavin is our everything right now and we are crushed to know we may never see him marry, have kids, play his first t-ball game, go to school, and all the other many memories that parents can't wait to make. We are heartbroken for him as he is the sweetest, most caring, thoughtful little 2 year old and is literally the best kid we could have ever asked for.
We will provide more updates as we move forward but again ask for your grace and patience as we navigate our way through this unbearably difficult journey. Please do not be offended if we refuse assistance, don't respond right away, or ask for it later. We love you all. Hug, kiss, snuggle, and give your kids / family extra undivided attention for us and Gavin. You never know how long you truly have with them, but we hope it is long and joyous.
All that said we are extremely thankful and blessed to have the following;
Dr. Nick Vitanza (Gavin's Brain Tumor Dr. who is coordinating treatment) - https://www.seattlechildrens.org/.../nicholas-alexander.../
Seattle Children's and staff - Absolutely amazing staff and has been a great resources for us.
Dr. Ermoian (Gavin's Radiation Oncologist) and staff - https://radiationoncology.uw.edu/faculty/ralph-ermoian/
Friends and family who we immediately leaned on for support. Your love and understanding mean more than you will ever know."
From Ashlee and Nate:
"It is with a broken heart and through bouts of tears that we must let everyone know that our 2 year old son Gavin has been given a terminal cancer diagnosis. A brain stem tumor classified as DIPG (DMG of the Pons) with a 0% survival rate and median life expectancy of 9 - 11 months. We need you all to understand at least that, before we explain further.
We will start from the beginning...Starting earlier this year, close to the new year, we noticed that Gavin appeared to go cross eyed at times. This ended up being 6th Nerve Palsy. We got in to see an ophthalmologist pretty quickly for fear of long term affects on his sight. The ophthalmologist had seen this many times before and it had always corrected itself, but advised on an MRI to be safe.
Fast forward to February 18th. Gavin's MRI date. We were scheduled for a 10am MRI (under anesthesia) at Seattle Children's Bellevue location but we mistakenly gave him jello that morning so it had to be rescheduled. Thankfully they were able to squeeze us in, same day, at Seattle Children's main campus. This is where we got the worst news of our lives.
Ashlee was inside the waiting room for Gavin to come out of the MRI and Nate was in the car. Ashlee called Nate in from the car, as the Dr. wanted to talk to us about the results. Nate knew immediately it was bad news. They even had one of the nurses waiting for Nate at the security desk as he walked in, and his heart shattered inside. Nate felt like he wanted to collapse right there and cry himself to sleep and wake up from the nightmare he knew was coming. Ashlee felt the same way as soon as they asked her to call Nate.
Once we both got in the waiting room they brought in Gavin who was not yet awake. This is where they revealed to us that Gavin has a brain stem tumor (DIPG - DMG). They immediately got Gavin in for a brain biopsy that night (amazing) so they could confirm and narrow down the type and better plan a treatment approach. Gavin did well and we were back home by Friday evening.
After many appointments and phone calls coordinating specialists and care, we are where we are at today (2/26). Day #2 of Radiation treatment at the UW Medical Center is done and about 5.5 weeks left of this. Gavin had a port surgically implanted on Tuesday (2/23) (like father like son) so that we don't have to worry about his little veins. He most likely will also undergo a form of chemotherapy as well.
At this time we are planning on a long road ahead. There are clinical trials on the horizon and some that give us hope for Gavin's future. Time is our ally and the longer Gavin lives, the greater the chance a cure is discovered via a clinical trial. We are extremely hopeful Gavin is one of the first to beat this.
We ask for your understanding and grace. We need to be picky with immediate and future needs and asks of support as we need to return to work and continue to care for Gavin. We will need your support more than ever before if Gavin is unable to pull through.
We have to take this one day and one week at a time and concentrate on the here and now. Everyday with Gavin is an absolute blessing that we can never get back and we are going to be trying to treat it as such, but we also have to approach it as if he will grow older which is doubly difficult for us. We need to teach him, guide him, and educate him. We are overwhelmed with fear, love, anxiousness, and sadness. Gavin is our everything right now and we are crushed to know we may never see him marry, have kids, play his first t-ball game, go to school, and all the other many memories that parents can't wait to make. We are heartbroken for him as he is the sweetest, most caring, thoughtful little 2 year old and is literally the best kid we could have ever asked for.
We will provide more updates as we move forward but again ask for your grace and patience as we navigate our way through this unbearably difficult journey. Please do not be offended if we refuse assistance, don't respond right away, or ask for it later. We love you all. Hug, kiss, snuggle, and give your kids / family extra undivided attention for us and Gavin. You never know how long you truly have with them, but we hope it is long and joyous.
All that said we are extremely thankful and blessed to have the following;
Dr. Nick Vitanza (Gavin's Brain Tumor Dr. who is coordinating treatment) - https://www.seattlechildrens.org/.../nicholas-alexander.../
Seattle Children's and staff - Absolutely amazing staff and has been a great resources for us.
Dr. Ermoian (Gavin's Radiation Oncologist) and staff - https://radiationoncology.uw.edu/faculty/ralph-ermoian/
Friends and family who we immediately leaned on for support. Your love and understanding mean more than you will ever know."
Organizer and beneficiary
Molly Allen
Organizer
Roy, WA
Nathaniel Nielsen
Beneficiary