Well what a huge week it has been for us here. From having the news crew from KPTM Fox 42 here to interview Justin, the Springville Elementary benefit, the success with Justin's feeding tube, to running around finalizing the last details for the benefit and silent auction at Westside Church tonight.
Justin came across so well on the news report - what a little rock star! Hopefully his appearance really helped to get the word out and we will have a full house at the benefit.
The Springville Benefit was an amazing success. The support and kindness from all that attended was overwhelming and it was so nice to see a smile on Justin's face when he got to see his friends again after so long. We have been told that the total raised from this benefit is in the region of an amazing $2,000! We will update the website when we have the final total. Thank you to everyone who contributed to make this such a wonderful night.
Justin was given a feeding tube 2 weeks ago as his weight had dropped to dangerously low levels. This has been a great move as his weight is starting to return to where it was prior to treatment.
And finally, we have been running around finalizing everything for tonight's benefit dinner. We are so excited about this. A lot of work has gone into this to make it a great night - food from Grisanti's with some amazing silent auction items and raffle prizes. We hope to see you all there!! Tickets will be available at the door if you haven't gotten the chance to purchase them already. The event is at Westside Church on 150th & Dodge from 5:30-8:00pm TONIGHT.
Once again - we can not thank you all enough for the care, love, prayers and support you have all shown Justin and our family. We are truly blessed to know such wonderful people.
When we first set up this fundraising page, we had so many unanswered questions. Justin had just been diagnosed and we were only just starting to get glimpses of the future. A future that no parent should ever have to try and imagine for their child. What we did not realize at the time was just how intensive Justin's journey was going to be. That Justin's treatments would be 5 days a week and just how much they would affect him and how much extra care he would need. In light of this, we have amended the target on this page.
What we also could never have predicted is the amazing outpouring of love and support from our friends, family, colleagues and community. We have been so amazingly touched and blessed by you all and words just don't seem sufficient to express our gratitude. From the very bottom of our hearts we thank you for making a difference to Justin and the rest of our family's life.
It was a bit of a heartbreaking day yesterday on our journey. The treatments are really starting to affect Justin. He woke up from a nap to find big clumps of his hair falling out. Due to the intense radiation, his scalp is so sensitive and sore that he doesn't want us to shave off his hair. It's so hard to watch our brave little man being so lethargic and weak all the time. He barely eats anything due to always feeling nauseous. Please keep him in your prayers for strength, comfort and health. It means so much to us all. He absolutely loves to hear about all the wonderful people out there that are praying for him.
We sincerely hope you join us for food and fun as we continue on Justin's Journey. Everyone's love, support and prayers have been incredibly uplifting and we thank you all from the bottom of our hearts.
Update: Justin had his first radiation treatment today and did an awesome job! They didn't even have to put him to sleep for it. We're so proud of our little man and the way he is handling it all. Please keep Justin in your prayers as it is a long road ahead for him. This starts his 5 day per week radiation schedule and next week he will be adding chemo to it. There are obviously many risks because of the location. Thank you again for all of your prayers and support. They mean the world to us.
Update: Yesterday, Justin got his port put in. The surgery was a success and he seems unbothered by it. Today, we received the results from his spinal tap. His spinal fluid is free of cancerous cells which means it hasn't spread! We are praising God for this miraculous news! God is answering your prayers! Treatments will start in about a week and we will continue to keep you posted. Thank you all for your continued prayers and support.
Update: We took Justin to see the radiation Doctor today before his surgery tomorrow to put the port in his chest for the next phase of his journey. He will be starting an intensive radiation and chemotherapy treatment 5 days a week for 6 weeks, followed by 6 months of intense chemotherapy. It's hard not to be nervous for our little guy but we hold faith in God continuing to work miracles in Justin's life. The support all of you, our friends and family, have shown has been invaluable. Please keep Justin in your prayers as he has his surgery tomorrow and as he continues with his treatment.
We received great news from the Opthamologist yesterday! It appears there's no damage to his eye's nerve, but it is still swelled. He believes that as long as the swelling goes down, Justin may regain his peripheral vision! Our surgeon believed he had likely lost it permanently, so we are praising God for this news!
Thank you all for you continued prayers and support.
Update: We are trying to give Justin as much normality as possible before his treatments start. Yesterday he managed an hour and a half at school and giving it another shot today. So proud of our brave little man.
A week before Justin's 8th birthday, he was bouncing around like his usual energetic self. A couple of days later he was on his way to the doctors with a mild fever and what was thought to be just a childhood virus. On the way there, one side of Justin's face became paralyzed with what the doctors thought was Bell's Palsy. This meant that Justin was unable to close his eye etc. The next day Justin's doctor ordered an MRI to check the virus wasn't attacking his eye and causing lasting damage. This MRI actually revealed Justin had a tennis ball sized tumor on his brain.
Justin was rushed into Omaha Childrens Hospital. On his 8th birthday after a small birthday party with his family in his hospital room, Justin underwent major brain surgery to remove the tumor. Throughout it all, Justin had an amazing attitude and remained so brave - laughing and joking with the nurses and doctors and amazing everyone with his strength of character.
While the tumor turned out to be even bigger than the doctors expected, the surgery was a success and they managed to remove the entire mass.
The biopsy results from the tumor have now been returned and have shown it to be a pretty aggressive form of cancer called PNET. Justin's journey will now continue with a treatment regime of radiation and chemotherapy for six weeks followed by chemotherapy for about 6 months.
We have set up this fundraising page to help with Justin's journey through this stage in his life. It is anticipated at this stage that the co-pay element for Justin's treatment will be in the region of $5,000 for this year alone combined with the additional financial pressures of lost wages with time off work for doctors appointments and caring etc while he fights this.
Throughout this experience, Justin has remained so strong and brave and is an inspiration how he is taking it in his stride. The love, support, prayers and encouragement from friends and family has been invaluable and absolutely overwhelming. The way you have all rallied around us has been so touching. If you could continue to keep Justin in your prayers, we would really appreciate it. It really means the world to us and we thank you from the bottom of our hearts.