Update 11/21/15: We are 10 days away from closing our 3rd Christmas Drive. Thank you to everyone who has helped to make Christmas special for the kids in the hospital.
Daniel is doing great! Over 6 months in remission! Finished a whole marking period in school. Hasn't done that in 4 years!
I want to include my email because everyone is asking for my address to send Daniel a Christmas card, but I rather not post it on here. You can email Daniel at email@example.com or you can message me through facebook.
Wishing everyone a Happy Thanksgiving! Enjoy this time with your family. And God Bless you all!
Update 10/21/15: Daniel is missing his 7th grade trip to Stokes for 3 days. His doctors don't think it is a good idea that he is that far away from us and the hospital. Also because it is in the woods and he could get bit by something that would drop his counts. He is upset he wanted to go. He is finishing up Fall baseball next week. He was so good. We were all glad to see him back at the sport he loves.
I want to say thank you to all Daniel's Fight supporters if it wasn't for all of you I don't know where we would be. I have listened to many families this past week of losing their home and jobs because of rare blood diseases affecting their family. It's so heart breaking. Because of you all we had the help we needed and still do. Thank you! God Bless all Daniel's Fight with Evans Syndrome supporters!!!!
Update 10/2/15. Not a good week for Daniel. He missed the last 3 days of school. Started out as a cold. Cold symptoms are gone. Now he has been running a fever. If his fever doesn't break soon will will be heading to the ER.
Daniel has a compromised immune system and one little cold could take months of fighting off. Please pray that this fever breaks soon. Thank you and God Bless.
Update 9/23/15. Daniel is still in remission and doing great! He has been in school for 3 week almost. He has not caught any sickness since starting. Thank you Jesus. He has been practicing with his baseball team and is really doing good. He has not played in a game yet. This Sunday will be his first. We are so excited to see him play.
As you all know his medical expenses we pay directly through his bank with this gofundme. We finally paid off his first 11 day hospital stay from three years ago when he was first diagnosed. Thank you to everyone who has helped us. We still have many more bills to pay off. Over 31,000. Thanks to his doctors and the great care he gets he will never be refused treatment. We are so blessed to have people who are always willing to help. God bless you all.
9/16/15 Daniel's Fight is holding our 3rd Annual Christmas Drive for the kids in Bristol Myers Squibb Children's Hospital at RWJ New Brunswick and CINJ Embrace Kids. We are collecting gift bags (medium size), books, coloring books, crayons, games, toys and gift cards. Everything has to be in by November 30th. If you would like to donate please message me. Last year we made I believe 58 bags. We are looking to make 75. The kids really enjoy getting a bag of cheer. Just to see their smiling faces is all the thanks we need.
Update 9/10/15 We have decided against my last post of getting Daniel the MMR vaccine. With the high percentage of his counts crashing Chris and I decided not to risk it. Daniel is finally enjoying his childhood. He started playing ball a few days ago something he couldn't do for a year and a half. He was awesome.. Daniel is in school. Last year he was homebound all but two months. We want him to enjoy life and not risk it with this vaccine right now. He has been through to much the past year and half. It time for him to be a boy and go out and have fun.
Reminder blood drive tomorrow 2 to 8 pm Bordentown Sr. Center.
Update 9/2/15: exhausting day! Daniel went in for counts this morning and they were great. 1 year post Retuximab treatments. We had a long discussion with Daniel starting back on vaccines. We have a plan in action and he will be getting the MMR vaccine next week and weekly blood test to watch for counts dropping to get him treatment before they crash. It's scary knowing this but getting the measles is a lot worse and with the recent outbreaks getting this vaccine can save his life because measles is deadly. With his low immune system he needs protection. Prayers for no reaction with this vaccine. He will then receive every 30 days two more DTAP and HEPA. We are not doing them at the same time because we want to know which vaccine is the trigger. Daniel starts school tomorrow as a 7 th grader. He is excited to go back. He also joined the fall baseball team. Really excited about that. Remember the blood drive September 11th next week!!! Please keep Daniel in your prayers as we go through the next 3 months with vaccinations! Thank you and God Bless.
Update 7/22/2015 Daniel is doing well this summer besides fevers on and off. But that is normal for him. Counts are low side of normal. This post is for the blood drive September 11th. I hope you all can make it.
Here is the link for our next Daniel's Fight a blood Drive. Start making your appointments. September 11th same place. https://drm.nybloodcenter.org/PublicScheduler/GroupLanding.aspx?GroupCode=68102
6/18/15 update. Daniel finished 6 th grade and is moving on to 7th in the Fall. So proud of him that he kept up with his grades this whole year while bring sick most of the time. Since last Thursday he has been running a fever but his counts are all in normal range. Daniel goes back to the hematologist, endocrinologist and nephrologist next week. The following week to the immunlogist to see if he has any more underlying issues. Usually with Evans Syndrome you have two or more other issues. Daniel has Evans Syndrome, ALPS, and FUO. Checking now for rheumatoid issues since he is constantly achy and sore at night. Please keep him in your prayers. We have the Evans In remission and plan on keeping it there for a long long time. Thank you and God Bless
This fund has been set up to help with medical and everyday expenses for our family. Daniel's dad was on unpaid family leave to be with him during this time. Daniel was in ICU at Robert Wood Johnson Childrens Hospital in critical care May 16 to May 22nd fighting this rare disease Evans Syndrome. This is the 4th time Daniel has been hospitalized for 8 or more days at a time. We have incurred alot of medical expenses for these stays. We never know when his counts will drop and will need to be admitted. This rare disease is so unpredictable. This last stay we almost lost Daniel to this disease and each relapse has just been getting more severe. The meds that used to work did not work this time and he had to have 9 blood tranfusions and chemotherapy to stabilize him. He is home but his RBC still continue to break down, we go weekly for treatments and counts. If his Retic goes up anymore he will have another 4 rounds of chemo. Please keep Daniel in your prayers and thank you all for your generous donations and support.
I just read your story in the paper Daniel. Your such a brave boy. I'm so glad you have a large family that help you each day with your illness. I hope you know there are a lot of people like me who are keeping you & your family in our prayers.