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Deakyn’s Fundraiser

$75,400 of $83,000 goal

Raised by 783 people in 2 months
Created April 22, 2019
Fundraising Team
on behalf of Jamie Lewis
38543632_1555954218185255_r.jpeg"CJ" Chelsea and her four year old son Deakyn have been at Oakland Children’s Hospital since Monday the 15th of April.
Deakyn has a rare, large tumor on his brain.
There was an overwhelming amount of fluid in his skull which they had to drill and drain out first to take the pressure away. He has had the first surgery which lasted 14 hours to remove the bottom half of the tumor which is the size of an Orange. This first surgery went well, and did not affect his eyesight, speech, or swallowing which was a huge concern. Fortunately the surgeons were able to avoid any complications. There have only been 300 cases of this in the country in the last year. Three of these were performed just a week ago by Deakyn’s surgeon.
While he is in the best hands, this is a very delicate surgery. As of now, another surgery is scheduled for Wednesday, the 24th of April to get as much of what remains of the tumor, as possible. There may be an additional 3rd surgery needed.
We ask that you all send positive thoughts and prayers to Chelsea and Deakyn and if you could please find it in your heart to make a donation of any size that you can towards the building financial stress, any and all amounts would be incredibly generous and very much appreciated. Whether monetarily or through prayers, we thank you so much for your support.
Please continue to keep Chelsea, Deakyn and their family in your thoughts and prayers. It’s going to be a long road.
Here is the link if you would like to donate.
 
 
 

 
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Firstly, I want to thank each and every one of you for the continued love and support for my sweet warrior, Deakyn.

I apologize for not updating those who have followed our journey, sooner. I appreciate your understanding as this process this overwhelming, stressful, and heartbreaking situation, while remaining strong for my son. As you can imagine, our worlds have been turned upside down, and this has been the hardest thing I have ever endured in my life. Again, I thank you all for being patient, supporting, and loving during this unimaginable time.

The side effects from the surgeries have left Deakyn with a form of Bell’s Palsy on the right side of his face, and his left eye is now “lazy.” He is also experiencing double vision and some aggression which has never happened before, apparently a side effect from the surgeries. My brave son and I are facing unsettling uncertainty. The most recent MRI was done early because Deakyn had spiked a fever. Normally, the rule of thumb is no MRI until 2 months post op. This is because the images can be misleading. Deakyn’s MRI showed “enhancements, inflammation, and growth of the tumor into the spinal cord” however, these can be signs of the brain healing from surgery... or possible growth. It is so very disconcerting , as nothing is clear at this point. The waiting game is taxing, and difficult to say the least.
We now have an MRI scheduled for the end of July which will hopefully show a much clearer indication to determine the next steps, whether that be a 3rd surgery, Chemo, or the best case scenario, nothing except another MRI scan at a later date to monitor the tumor.
I know my sweet boy will beat this, and I will be right by his side, as I have been through this entire journey. My family and friends are our biggest cheerleaders, and have been all along. And to all of you following our journey- THANK YOU for your continued support, love, prayers, and donations.
We will have a long road ahead with lots of Doctor’s appointments, physical therapy, MRI’s, and recovery. There are still so many unknowns.

Please keep praying for strength for my Warrior as he fights this fight like the Champion he is.
#DeakynStrong
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Update from Deakyn’s Family:

We wanted to thank everyone for the warm thoughts and prayers. All the support has been a godsend!

Deakyn has made it through two big surgeries and has come out on top! Both were over 20+ hours and very technical. The large tumor they found was pressed up against and slightly into the neocortex. The motherboard for our bodies and control everything from the ability to swallow/breadth, move the body, face, speech, balance etc.

There are only roughly 300 cases a year (in the US). Again the location is right above his spine and in the back of his skull and was the size of a large orange. We got the results of the biopsy: Juvenile pilocytic astrocytoma, (JPA) is a rare childhood brain tumor. In most cases, the tumor is a benign, slow growing tumor that usually does not spread to surrounding brain tissue. Symptoms of a JPA will vary depending upon the size and location of the tumor. WE have the official sit down with the neurological team next Friday (the above is the unofficial word)

So... it is the one you want to have if you have to have one. It can however act aggressive and can be extremely tough to treat. The Dr’s tells us every case is unique and from what we have seen in the PICU, we would have to say everything is constantly changing. Deakyn still has a small part of the tumor that is logged up close to the part of the brain that controls balance etc... the Dr’s want to leave it (monitor it) as it would be to dangerous to operate in that location.

They have a DNA test being done on Deakyn’s tumor and if it fits a certain DNA mold and growing at a certain rate they might have a targeted approach to treatment (pill form - newest treatment). At this time, Chemo and Radiation is not on the table however not off either. Deakyn’s Tumor is not cancerous from what has been found so far!! - the head neurologist said he has never seen such a large tumor in a small child that has not been cancerous - Fingers crossed), however at times JPA can be extremely aggressive and be troublesome.

They are taking more MRI’s today (and will do many over the next several weeks as Deakyn will remain at Children’s Hospital for monitoring). Yesterday the Dr’s did what they call a spinal tap to attempt to get the brain fluid to circulate and alleviate the pressure build up in his skull. The hole/drain that has been in his skull was plugged/removed. If this spinal tap works then Deakyn will avoid another invasive brain surgery to install what they call a shunt... this facilitates a function a normal brain preforms to circulate a saline solution that surrounds the brain. Seeing the little man’s hair again and the removal of the “spaghetti noodles”... for all the machines that he was hooked up to makes me feel so happy and makes the little man happy too! Deakyn has been showing off his big ouchie and telling all the nurses (when he is not flirting) that it was due to him eating too much sugar!

Not out of the woods, however the support and love/prayers have gotten us to this point with minimal damage to Deakyn (thank you). It has been a miracle, and the surgeons have been true artists in navigating and extracting this tumor. Our combined families have grown closer and their have been transformations and bridges built over the last three weeks that are just as impactful as the above successes.

For all he parents reading this please hug your little ones/loved ones just a little longer tonight and be thankful for the gift of good health. All those big plans and some days are not a guaranteed, take the time now. Love you all and thank you ALL for your continued outreach and support”
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Deakyn says "Thanks everybody"!!!
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Update as of April 30, 2018:

The ICP (drain) that Deakyn has in his skull is not draining properly. Tomorrow (May 1st) they will have to do a procedure where they clamp the drain from his skull and make an incision in his spinal cord. This is called a Lumbar puncture or spinal tap. This is to see if he is able to properly drain fluid going that route instead.

The next step after that is another MRI and yet another procedure to have a shunt put in his skull so the fluid can drain properly as his body is unable to do it on its own.

We are STILL waiting on the pathology report regarding the tumor. It’s a long waiting game and a long road but he continues to fight harder each day. We are so so proud of our little big warrior.
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$75,400 of $83,000 goal

Raised by 783 people in 2 months
Created April 22, 2019
Fundraising Team
on behalf of Jamie Lewis
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