Aten Family Cancer Fund
UPDATE: Dan's most recent PET scan and now biopsy results have confirmed that his cancer is back - he has a very painful lymphnode area on his back that is growing by the minute. He cannot get treatment locally for this next step (more intense chemo and possibly a stem cell transplant) so they need to move to the Philly area for inpatient and outpatient treatment - even when he's out of the hospital, he has to be within 30-45 minutes of the hospital incase anything happens. They will be there for at least 6 months are moving a lot of their things out of our house this weekend so he can start treatment next week.
I’m starting this Go Fund Me account for a work friend and fellow speech therapist that I actually met by covering her maternity leave last school year. In May 2015, Emily was blessed with her first child, a baby boy, Tyler. She and her husband, Dan, were busy taking care of their new baby when unfortunately on Christmas Eve, when Tyler was just 7 months old, Dan was diagnosed with Stage 4 non germinal center diffuse large B-cell lymphoma/cancer. The timing wasn’t ideal, although, it never is when it comes to cancer. While away from work, Emily took care of Tyler but also cared for her sick husband. He got 6 outpatient chemo treatments locally between February and May 2016 and they got good news via a PET scan and blood tests that the cancer had seemed to be resolved! Time to get back to enjoying life. Emily started back to work at the start of the new school year this fall, taking Tyler to daycare for the first time. They had just started to get into a new routine when Dan recently went back to the doctor for some follow up tests and they detected a ‘spot.’ It could’ve been nothing, possibly just a cyst, but they needed to do further testing as it’s better safe than sorry in these types of situations. Unfortunately, the PET scan and biopsy results came back that Dan again has Lymphoma. This time though Dan will have to go through more intense inpatient chemo and stem cell transplants at Penn in Philadelphia. This requires he and Emily, with a toddler in tow, to stay within 30 minutes from the facility and both to take even more time away from work. This family has a lot on their plate with financial burden of medical bills, stay (paying for their current home and their “Philadelphia home” where they will have to pay to stay while Dan goes through treatments), food, travelling, taking care of a little one, and losing income while taking more time off of work. They would be appreciative of any help you can offer whether it be money (any little bit can help) and of course prayers and positive thoughts. If you’re unable to contribute to this fund, please share this Go Fund Me link and pray and/or send positive energy to this family in their very difficult time. Thank you!!!
First, I want to say that we are very sorry for not updating GFM. You all have supported us so much on our journey and we are very grateful for all of the help that you have given us through positive thoughts, prayers, and donations. We appreciate it so much. Our last hotel stay alone was more money than we make in a month now that Dan is making only 60% of his pay and I’m not getting paid through work (I had unused personal days and sick time which was allowing me to get paid more). That plus gas, food, etc. when we were gone really adds up. And we’ve had to stay in Philly a lot for his numerous treatments (see below). Plus his medical bills for the year have started coming in as well and we will reach our deductible and out of pocket max easily. If you are reading this for the first time or have been following our journey and would like to continue to help our family, if you personally know us, I ask that you mail us a check versus donating on here. GFM actually takes about 10% of whatever you donate to us and keeps it for…whatever they require. So if you donate $100, we get $90. I do know that it is an extra step, but we’d appreciate it. Now for the medical update ---
So in October we posted that we either do nothing and Dan dies in a few months or we fight and we see what happens. Well, through that fight, we have gotten this far! More time. More days. More memories. :-) We got more birthdays and another Halloween, Christmas, Valentine’s Day, St. Patrick’s Day, and our 7th anniversary! Plus all of the other wonderful “regular” days of playing in our backyard and going on little trips as Dan feels well enough to do. The regular days that we wish for all the time.
The R-EPOCH chemo that Dan got 6 rounds of shrunk his tumors but did not completely eliminate them so we had to find another treatment. Our oncologist recommended a treatment that insurance absolutely refused to pay for even after a number of appeals and going to an outside agency. They never told us what to try, just that it wasn’t FDA approved which we KNEW because we already tried everything that was!! Anyway, we looked into a self-pay option which was going to cost us $30,000. Our oncologist kept looking and decided that Dan should undergo another carT cell immunotherapy treatment, which had just been FDA approved that week and is top-of-the-line, and insurance would pay for this. The first carT cell treatment he got a year ago was on a clinical trial so we didn’t go through insurance then. Only a handful of people in the world have ever gotten two of these treatments. He got the carT cells on April 30 and got discharged from the hospital the Thursday before Memorial Day, so he was admitted for a month, which is a long time for him and a long time for us. He had high fevers and scary cognitive issues during the time that he was there, which had to resolve before he could leave. So, another treatment has worked to shrink the tumors, but it’s still not a cure. Again. His largest tumor is now 5cm according to his PET scan on June 4.
So it’s mid-June and here we are searching for yet another treatment. And we are literally running out of treatment ideas. We’ve done all the Western medicine options. Chemo. Radiation. Drugs. CarT cells. There are no clinical trials that he would qualify for or that are even promising. I don’t know how many times his oncologist has said that people do not make it through this many treatments – NINE different treatments. They are either cured or pass away. Dan has to still be here for a reason. Yes he gets tired and needs more sleep and can’t do everything he could before. He can get dizzy easily. And his kidneys aren’t doing the best. But he’s finally not neutropenic and has a bit of an immune system - *as of right now* he’s doing somewhat OK. He looks like himself. And I am so thankful for that because we have no idea what the future will hold for us. We have had more days of playing and being together and that’s what matters most to us now.
The current plan is this: Dan’s oncologist now wants to do an allogenic stem cell transplant from a non-relative donor. We have a 10/10 match and now we need to contact them to see if they are still willing to do this. (If you want to see if you could be a donor for someone else, go to bethematch.org. It’s a simple process and you can save someone’s life.) This could start early August and he would be admitted at Penn hospital for 4-6 weeks. We haven’t been asking the odds because the more treatment he gets, the less our odds are. We are now at about 20-25% chance that he will be cured from a stem cell transplant. 1 in 5 that this will work. 20% is death from the chemo/radiation/stem cell process itself. 60% is going into organ failure, it not working and the cancer is still growing, and eventual death. So we hope and pray he’s in the 20% curable side of these percents. BUT the tumors have to stay under 5cm for stem cell to even be considered. So now we need to find….something….that keeps his tumors down. Chemo could make him too weak for stem cell so that’s out. Radiation to the areas isn’t possible because they are in his lungs and kidneys, and we can’t harm the outlying areas and we have to keep inflammation down. Surgery isn’t possible because it’s too risky where they are located. He may need a stint in his one kidney to keep it flowing properly. We have to get a scan done this week to see what’s going on there. We’ve gone to a nutritionist who has made recommendations on what supplements to take to help his leaky gut and immune system, specifically taking apple cider vinegar instead of his PPI and taking a probiotic as well as Vitamin D. We’re starting there. He is also taking Juice Plus and is limiting his refined sugar intake. We usually always eat well as it is – we are a meat and vegetable kind of family. He is also taking a drug called Venetoclax and is simultaneously taking it with a high cholesterol drug which has shown promise with decreasing/eliminating cancer cells in those with lymphoma – a preliminary study literally just came out on this. And he has to get an infusion locally called IVIG (intravenous immunoglobulin infusion therapy) because the chemo and treatments have decreased or abolished his antibody production capabilities and we need to get his body back in shape. But I’ve been on the phone fighting with insurance over this as well, so that’s been frustrating.
Our plan literally changes daily. The meds he’s on. Our appointments. When we have to drive back to Philly for appointments there versus at home. It’s a full time job but when we are done making phone calls or doing research, we focus on us. Our family. Because we have to focus on the happy to get through the hell.
Thanks again for all of your support.
My thoughts and prayers are with you and your family.
I am still praying for all of you every day.
Dan, our family will be praying for you and yours. All the Best, - John Sharrar
Keep strong I am praying for your family you can fight this.
Lenny and I are praying for all of you .
God created a cure lemon grass tea cure without the poison of chemo Aunt told a stage four breast cancer the younglady is now cancer free the family now grows their own lemon grass .