Fighting For Preston Scott

Jesse is an amazing single father and sole provider for Preston. Holding the full weight and obligation of Preston’s medical bills and responsibilities. Including his funeral cost Jesse was just let go from his job recently and has medical bills to still pay that keep rolling in. Along with his existing financial obligations. Your help at this very difficult time of need is greatly appreciated in helping make sure Preston gets all he deserves.

Below is their backstory. 

Been trying to find time to write this update so everyone following Preston knows what’s going on and WHAT OUR PLANS AND GOALS ARE MOVING FORWARD FOR PRESTON! 

If you are new to Preston’s story, Preston has been fighting Medulloblastoma now for 4 years. This journey started before his diagnosis in October of 2014/He relapsed in January 2016 right after finishing what was supposed to be his last round of chemo.  They gave Preston a 6-12 month life expectancy after relapse. We did almost another year of aggressive chemotherapy to combat this horrible cancer until Preston could no longer tolerate chemotherapy. 

We then started doing alternative treatments with different types of infusions and other natural treatments to help Preston combat things with supplements and nutrition to the best of our abilities. We even went through a government trial using the modified measles virus in July 2017 which was very hard on Preston. After this trial, Preston’s tumor started to grow slowly which is rare for medulloblastoma. We watched it closely over the ensuing months and in January 2018, we could no longer ignore the tumor. It had to be removed and was successfully done so at Seattle Childrens. We have wanted the best quality of life for Preston through all of this as it is extremely difficult watching your child endure so much over the past several years. Preston’s cancer started to progress again shortly after his surgery in January 2018. We have searched and researched everything over and over and unfortunately our window of options have been extremely limited. There just isn’t a lot of options available for his cancer or genetic match that they look for. And if there is, it’s not very promising and doesn’t seem to be a good fit or just isn’t something we want to put Preston through or have to make him endure. 

We started Preston on a ketogenic diet with some new alternative infusions July 2018 along with an oral chemotherapy May 2018 that is fairly well tolerated and continued with these until recently. Preston started having more seizures the past few weeks and we made adjustments with meds and a couple of trips to the ER for these. 

September 2018 has been one rollercoaster ride. After Preston’s last infusion therapy his seizures were still continuing and we went into the ER, were admitted and stayed a couple of long nights at Marybridge. Preston’s MRI showed us progression and Preston was in pretty bad shape. His team told us they thought he had maybe a couple of weeks left and on September 12th they sent us home on Hospice. This has been the toughest couple of weeks on all of us as we have been preparing for Preston’s passing, a funeral, a place to bury our precious boy, preparing for the unimaginable-every parents worst nightmare.

Early on the morning of September 17th we all were saying our goodbyes to Preston... again.... as it seemed to be that this was the moment he really was going to leave us all.  We held him for hours shedding endless tears telling him it was ok to go home now. We made him as comfortable as we could. As the day went on, Preston seemed to get a little better. So we kept caring for him as anyone would for their child with hope still remaining that just maybe-he will pull through this. We said goodbyes again Tuesday evening as it again looked like Preston was going to go home. It has not been easy at all to watch this. 

Hospice was out on two occasions last week and they were surprised that he was still here and even said this is not what they would be expecting. Before we left the hospital his team said that Preston has done nothing but surprise them these last few years and that who knows maybe Preston has one more surprise for us.

Well, it’s now September 24, 2018 and I am here to tell you, Preston is still with us and once again proving to us that he is against all odds with him and surprising everyone again. The comeback kid has something to prove and we are thrilled to help him do so! It seems that Preston is improving little by little each day and showing us just how much of a fighter he really is! We have never given up on Preston and we are taking this one day at a time. 

So, with all of this being what it is and Preston is still in this fight, we are working on getting Preston stronger each day. We want to get him discharged from Hospice or we will take him off if it if we need to. But we have found a facility that we really feel is the best option for Preston that is doing some pretty amazing things.  This is of course going to cost us money to get him there and afford the treatments. We are asking for all of you to please help us get this little fighter there and get these last potential life saving treatments! This really is a chance to help save Preston who has been fighting for so long and clearly wants to keep fighting the good fight!  We need your help! We have set the GoFundMe me goal at $30,000.00 which should cover his treatments. But the reality is that this is going to be a long road ahead of us and will take time. Hoping we can exceed our goal so that we can keep fighting beyond these initial treatments as I am being told that this journey could be a couple of years long. I will take that and run with it! 

Thank you for all of you who have joined in the fight for Preston’s life! 

#FightingForPrestonScott
Follow Prestons story on Facebook by clicking here. 



Jesse Scott

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Preston was diagnosed (October 2014) shortly after he turned 4yrs old with Medulloblastoma, an aggressive type of brain cancer usually associated with children. His tumor was successfully removed and nothing of it could be seen after surgery. His tumor was tested for type of cancer and to make sure it wasn't an elevated form of Medulloblastoma which would have called for a different protocol. Lucky for us Preston fell into standard risk with normal protocol treatment and we went through a month of Radiation and then almost a full year of Chemotherapy. All of his scans throughout treatment showed no sign of bad news and things looked great! We finished with Preston's last round of chemo a couple days before Christmas of 2015. Follow up MRI was January 21st of 2016.

This MRI brought us total devastation with the results that two new spots had showed up in his scan. His Treatments had only been keeping the cancer at bay and hadn't really done much of getting rid of it. We started doing everything we could in the way of natural treatments and supplements. We headed up to Seattle Children's Hospital for an MRI on March 10th and to talk to the Seattle team about options for Preston.

This March 10th, 2016 MRI was another punch to the GUT, with 2 fists. In about 6 weeks since his last MRI, Preston had a new tumor on the left frontal lobe. We couldn't believe it! His first Seizure came the next day because of the tumor. It was that bad we rushed Preston to the ER and a breathing tube was placed. Then the EEG and wires on his head and the doctors messing with meds to control the seizures. We now live life with seizures as a real part of our life now because of this new tumor. His images also showed progression of the disease in other areas of the brain where it starts to look like frosting on the brain in layers and starts to become nodules or built up layers of cancer cells. This was the first time through all of this that I honestly felt like I was going to lose my son. There is no way to describe this, the feeling you have knowing that there is not much you can do and that you may have to say good bye to your child in the coming days, weeks, months if you're that lucky to have him around that long.

We got to go home after our trip to the ER due to the seizure, but we're back in the hospital a couple days later where he just wasn't doing good and we were obviously feeling desperate and panicked beyond anything we could have imagined. We had found a trial method in Houston that was working for kids with relapsed Medulloblastoma and the doctors here went forward to put an Omaya Reservoir (March 18) in his head and we were able to have methotrexate given directly into the ventricle. We did this for 3 rounds.

Preston picked up C-Difficile (Gut Infection) and we were able to stay out of the hospital but in this process we ended up getting his next MRI moved up a week to April 22 to make sure some of the problems Preston was experiencing were not related to the disease. We got a call from the doctors that this scan didn't look good either that it shows progression again.

We were hoping so much for just a little bit of good news that maybe it was stable and that things hadn't progressed at all. So another punch to the gut for us. Preston's mother and I have researched so much and so many things only to be shut down and told that we don't qualify for the available trials because the disease is too far spread, meaning they don't want to take on the risk is what it comes down to.

At this point, the doctors don't feel that the methotrexate directly into the ventricles has helped or slow things down at this point. Which leaves us with what? Not much else, other than they can offer more chemotherapy of different kinds that can maybe help extend Preston's life for another 12-18 months.... And that's not even a guarantee, that's a 50/50 chance at best. This isn't good enough for us or for our Preston.

We have NOT GIVEN UP HOPE. And we ask for your hopes and prayers and positive thoughts and energy sent his way! We will be posting updates often!
We are lucky enough to have Preston home with us right now and doing fairly well and in great spirits. Preston is such a great joy to us and brings us sooooo many smiles every day! We want to keep those smiles and laughter around! Thank you in advance for your help, hope and prayers!
We are looking forward to a successful outcome, and a fight not just for Preston, but all kids fighting cancer wherever they might be.