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Hayden Jilka - Journal

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Posted 2014-11-27T16:02:54Z

Thanksgiving morning

Hayden woke me up early today like he's done in the past to ask if I'd like to spend some time with him before the "terror toddler" gets up, as he calls his brother. We built and finished a couple of lego projects he had and really enjoyed our time together. I'm reminded everyday and every moment spent with him how special he is and what a truly loving, caring and smart my little guy is!!! Such a BLESSING!!! Thank you lord for all you're doing in our lives right now!! I did notice a few stray hairs falling down Hayden's face, which I removed and then realized after grabbing a small chunk and it falling out that he has reached the point of losing his hair following his latest chemo round yesterday. He's ok with it, but wanted reassurance it would grow back and that I would keep my head shaved as long as he was in treatment and without hair...which I quickly agreed to! We will be having a head shaving party sometime this weekend after thanksgiving for all of Hayden's hardcore supporters to really show their support and shave their hair off. Thanks be to God for he is good!! Happy thanksgiving to you all!! ~ Nate

Posted 2014-11-25T04:28:00Z

Week 3

Hayden is doing well, living life and enjoying every day. He's continued to attend school while not in treatment and has enjoyed staying plugged in to class and interacting with all of his friends. We go back Wednesday for round 3 of treatment. So far he hasn't dealt with anything major that we haven't been able to help him with, and he's been eating and drinking for the most part very well. We continue to pray for Gods hand of amazing healing to be laid on him daily, and thank all of Hayden's friends, family and supporters for continual prayers!! Nate~

Posted 2014-11-20T20:21:33Z

Post chemo apt #2

Hayden did exceptionally well with his second treatment yesterday. He was also very brave while the radiation department formed the mask over his face for his radiation treatments in the future. As parents couldn't be more proud of him for his courage through his treatment this far. We understand Hayden won't always feel the greatest from his treatments, but our positivity, love, support and unending faith will bring us all through this bump in the road. Again prayer for minimal side effects from his treatment, and healing of his body are our main requests. Thanks for your continued support!! Praise The Lord for the smooth day we had at Stanford yesterday! ~Nate

Posted 2014-11-19T08:01:00Z

Future fundraiser needs

I'm sure many of you have read my latest FB posting about our family fundraiser party/horseshoe tourney. For those who haven't, we're looking for donations for an auction and/or raffle to raise some funds. Many of you may not have any extra money around to donate.... If you live in the Bay Area that's no surprise. But I want to let you all know there are other ways to help. If you have any connections for donation items or know anyone that may be able to help our cause please pass the word on. Our home address is on this site if you would like to mail or drop off any items for the event. The date is TBD at this point, but looking like possibly march sometime. Let's pull together and enjoy a great event for a good cause and have some fun!!! Picture is Hayden writing thank you cards to his supporters!!! God bless you all! Nate~

Posted 2014-11-18T03:43:47Z

Post chemo #1

Hayden has been amazing thus far, a real trooper especially with the rapid pace everything has happened. During treatment he was oblivious to the fact he was actually getting it because he couldn't feel it. The next 24 hours he was fine , and all the way home. And slept a full night his first night home. The morning following he was noticeably still tired and not super motivated to do much, so we continued movie watching for the day. He had a decent appetite that evening as well. Late that second evening Hayden began to experience some pain in his joints and teeth/face which lasted 2-3 days total, and increased in severity for some reason in the evening when he was trying to sleep. His throat had also become quite sore which is where the liquid diet came into play. He had lost his appetite for sure but would eat a few bites for me while I praised him for doing so well through all this so far. Such a good kid... Like I said before, he's been a blessing to our lives since day 1...same with his brother Garrett. I pray these side effects don't happen every cycle we take him through, as you all can imagine seeing your child broken or in pain and not being able to mend their wound or help them with their pain. As a mechanic, father and husband it's my job to be able to fix things, and though I can't fix everything about this situation Jesus Christ can! I truly believe that. We go back to Stanford on Wednesday for round 2 of chemo. I want to say a personal thank you to all who have donated and posted words of encouragement to Hayden and the family. I read your messages aloud in the house for all to hear, and Hayden enjoys reading them as well. Thanks from the bottom of my heart for your continued support, prayer and words of encouragement to my little soldier Hayden. Nate~

Posted 2014-11-13T10:57:00Z

How we arrived here ...

Our lives changed the day our son Hayden was born. Samantha and I never knew what the love of a child would be like and how much love we would feel while caring for him and watching him grow up. He is an absolute joy to be around and has become quite the polite, loving young man we always knew he would become. His younger brother Garrett (2years old) has also sprouted into an exceptionally bright, loving and full of energy bundle of joy. We couldn't feel more blessed by The Lord with our family. Hayden is an energetic 7 year old, bright, full of love to give, always ready to have fun or make a new friend. He loves to skateboard, surf, play soccer and other ball sports with his friends and family. Hayden's smile can light up a room, his comedic attitude and warm heart can bring a smile and laugh out of the most dismal situation. He is a true blessing! Thank you Lord! One evening while rough housing in the living room I had Hayden wrapped up in a hold and brushed up against his cheek. Hayden mentioned that his cheek hurt, so as any caring parent would do,I asked him a few questions and checked out what he had going on. I quickly realized there was something going on and Samantha and I took the necessary steps to have him checked by a doctor for the small growth I had found inside his cheek. The growth was removed without any issues and sent to be tested at UCSF. **(Keep in mind we were told this was an infected salivary gland and the antibiotics to follow were to help any other infection from starting while his mouth healed up)** Roughly a week after the removal my wife received a phone call out of the blue from the doctor who had removed the growth... And the news wasn't good. The growth had tested malignant as cancer. I was contacted at work and immediately left for home. Shortly after arriving home there was another phone call... Lucille Packard children's hospital for blood disease and cancer at Stanford. We were instructed to be there as quickly as possible to begin running tests and scans on our oldest son Hayden. Our lives changed in an instant...the struggles of daily life, the financial struggles...all the insignificant BS I complained about was gone! The only thing I could think of was my best buddy, my surf partner, my little skater dude and how to protect him and get him healthy. Throughout the next couple weeks the once blurred picture of our future as a family became clearer than ever. My son Hayden would need a pretty extensive treatment plan over the next year and we were along for the ride weather we liked it or not. His diagnoses is rhabdomyosarcoma, which is a cancer of the soft tissue. The tumor found is located in between his inner and outer cheek on the left side of his face which leaves very little tissue to deal with during a surgical removal. The prognosis is good, 90% chance of getting rid of the cells through treatment and dealing with the side effects. Chemotherapy and radiation are our only options for treatment at this point. We trust The Lord will guide the hands, hearts and minds throughout his treatment at Stanford over the next year. As you know this type of continued care will be very expensive, and we are also trusting our Lord Jesus Christ to provide for us during this trial in our lives. The Lord works in mysterious ways, and if you feel compelled to donate to our family in any way please feel free to do so whether it be a meal to eat, support through prayer or a financial donation everything is helpful. I hope to have a better idea of our immediate needs later this week following his first treatment today and once we get him home...I will update as soon as possible. Romans 8:28 And we know that in all things God works for the good of those that love him, who have been called according to his purpose. Thanks, Nate jilka and the Jilka Family

Posted 2014-11-11T19:17:45Z

Day one

Hayden had his port installed late yesterday evening and everything went great. We are awaiting his first chemo treatment today...and a return home Wednesday. Our prayer today I there are no adverse effects from the chemo and we have safe travels back to santa cruz. Nate