December 2nd, 2017 update - The loss of a hero
On December the 2nd, 2017 our hero’s battle ended peacefully, surrounded by those he loved. There are simply no words capable of conveying the heartbreak that we will forever hold with us, or the hole left in our lives without him.
We will forever cherish our memories with him, and we will always remember what an absolutely incredible young man he was in so many ways. His intelligence, compassion, and love were beyond that of any person we will ever know, and had no bounds. The light that he brought to this world lives on in our hearts and minds, and is absolutely irreplaceable.
Riley, we could not be more proud of you for the bravery that you fought every day of this battle with. Now you can finally rest and know that you gave it your all. We would trade the world for one more day with you.
About Riley and our mission-
Riley has been a beam of sunshine in every life that he has stepped into - and now it's our turn to try and brighten his and his family's life in their greatest time of need. On November 1st, 2016 Riley was diagnosed with an extremely aggressive, rare form of pediatric brain cancer known as Diffuse Intrinsic Pontine Glioma (DIPG), which typically affects children between the ages of 5 and 9, and has an extremely low survival rate. This soon after a diagnosis, many factors are still up in the air, but one constant is that medical care, transportation, and extended job leave are all extremely costly. It is our goal through this website and our IndieGoGo Generosity crowdfunding campaign to raise as much money as possible in order to support Riley and the rest of the Voss family in this heartbreaking time of need.
On the 'About' page of this website we have some basic information about what DIPG is.
No words can describe the devastation this diagnosis has left with Riley's Mother, Father, Sister, and family as a whole. Please help us in our time of need by donating here.
I know many of you are wondering where he is with treatment. So, the update on his status is as follows:
Of course many things were up in the air when we first found out Riley's diagnoses on November 1st. After conferring with many specialists across the nation, we have found ourselves at DC Childrens' Hospital, starting with a clinical trial study that will assess the genetics of the tumor; they assign chemotherapy drugs they think will work best based upon what they find within the genetics of his tumor. They are doing a MRI and CT scan today and will do a biopsy of the tumor tomorrow. Then, he will receive radiation for 6 weeks at Duke Medical, before participating in this clinical trial, which will mean frequent trips to DC (initially once per week). They have assured us that if he is not responsive to this treatment, we can switch to a different clinical trial or treatment. We drove to DC Childrens' Hospital yesterday for a consultation, not anticipating we would be here for the rest of the week. However, we have noticed that he has started having some paralysis on the right side of his face, so the need to act quickly and move to radiation treatment has become essential.
Riley is handling everything really well and we couldn't be more proud of him.
Please continue sending prayers his way.
It has been awhile since we have posted any updates, as in June Riley was released from the clinical trial he was under when an MRI showed that his tumor had doubled in size from his initial radiation. We were absolutely devestated; especially since his doctor estimated that he would only have 3 weeks to 2 months to live. In spite of the risks, we opted to pursue re-irradiation in July with the hope that we would be able to improve his quality of life and give him a few more months. Fortunately, re-irradiation has helped him accomplish this. In the meantime, we've been doing research and have reached out to pharmaceutical companies to see if there was anything out there that hasn't been tried for DIPG that might be promising. Today, Riley will be having his first MRI since June. It is looking like we will have a single-person FDA (compassionate use) approval for a chemo possibly by next week! It hasn't been used on children or DIPG up to this point, but when nothing else works....the best option may be to try something completely different. Please continue to pray for Riley. He is not functioning as well as he once was. Though, he continues to be in good spirits overall, he has said he is afraid he might die. No child's greatest wish should be to grow as big as their older sibling. Continuing to pray for a miracle and never, ever giving up.