Update 3/27/2015 Here we go again. Good news is Daniel's retic count is down by .45 still high but at least it came down a bit. Bad news the blood test that were done a few weeks ago show his thyroid is not working and he his schedule for the endocrinologist next week. We are now concerned with his ANC which he has never had a problem with it is very high which could be from his thyroid. So we now know why he is gaining weight so rapidly and exhausted. We will see the endocrinologist and then they will get together to discuss options. We have all the paperwork we need and script for labs in Florida.
2/18/15 Not the news we wanted to hear a month before Daniels Make a wish trip. Daniel's Rbc's are breaking down faster then two weeks ago. The good news is his bone marrow is keeping up with the breakdown.His hemoglobin is holding stable. So we are to watch for first signs of jaundice, dark urine, tired and stomach pain, headache. Any of those symptoms straight to ER. Doctor did say it could be from him being constantly sick is why retic is high but not sure. So please pray for Daniel, thank you.
Update 2/14/15 Daniel has been sick on and off since December when he returned back to school. He is now on home bound instruction again. He cannot fight off a simple cold like everyone else and he is out of school more then he is in. Doctor agreed it is best to keep him home until Spring comes. This year has been rough for him. Praying his wish trip to Disney cheers him up, he is really looking forward to it. Praying his counts stay stable enough to go. Still a month in half away, something for him to look forward too. I also want to mention that February is Evans Syndrome Awareness month so wear you colors, red white and purple. Here is Daniels facebook page link. Please like his page and you can see all the give back events we are doing. We are now doing Give back event for Clara Barton School where Daniel attended when he was first diagnosed. Our next scheduled blood drive is July 17th. February is Evans Syndrome Awareness Month. lease join and share my sons page to help spread awareness of this rare disease that less then 1000 children worldwide have. thank you
Update January 23rd we held our 3rd Blood Drive in honor of Daniel to spread awareness of Evans Syndrome. We succeeded our goal and had a very successful drive. Thank you to all who cane out and donated. Daniel is feeling better. Has been fever free since Weds. We are going to try one more time with school. He will need to wear his mask again at school. He is not happy about it. I am going to talk to the school and see what we have to do for him to be homebound for the rest of the year. He has decided he don't want to play baseball this year. And you all know how much he loves ball. I hate this disease and all that come with it. Daniel used to be so athletic and energetic but this Evans Syndrome has really knocked him out. Thank you all for keeping our family in your prayers.
1/7/15 not the news we expected. Daniel's retic count has gone up again. Keeping a very close eye him for first signs of jaundiced. Was hoping for remission but didnt happen. We are now back to six weeks visits instead of 3 months like we were hoping for. We go back the week before the NJDevils game. Pray his retic count comes down. Thank you.
Update 1/3/15. Daniel is doing well. Weds 1/7/15 we go to CINJ for his checkup and counts. We are hoping to hear the word "remission"! The next few months will be exciting for Daniel and the family. January 23rd is our 3 rd blood drive. February 25th we were invited to the NJ Devils game and dinner from the blood drive team. Also Daniel's wish will be granted by Make a Wish to Disneyworld. Praying his counts remain stable for the next couple of months to fulfill his wish. Thank you all for keeping our family and Daniel in your prayers. Wishing you all a Happy New Year and God Bless you all!
Daniel has returned to school as of December 1st. He is doing good. Retic count is still high but counts are remaining stable for him. He had a good first day of school and was excited to see all his friends. Thank you all for keeping him your prayers. I hope you all had a great Thanksgiving.
Update 10/11/14 Daniel has been put on home bound instructions through December1st due to these viruses going around. His Retic count has come up a bit meaning his RBC's are being attack again but not high enough where he would need to be treated as this time.
Update 9/2/14 Daniel is doing good. His Retic count is coming down. RBC's are not breaking down as fast. Daniel will be starting the 6th grade on Thursday. He is excited to go to middle school. His next appt is the end of the month. Praying for a good 6th grade year with no more drop in counts. Please keep Daniel in your prayers!! God Bless.
Update: August 3rd. Daniel is holding his own the doctor says. Counts this week haven't changed still stable. His rbc's still are breaking down as fast but his bone marrow is keeping up with the break down. We can tell his spirits are low because of some boy where we live. He doesnt go out much. He is on his 4th week of tutoring and doing well at getting caught up. He went to the Blake concert on the beach and he had a good time. Fell asleep right in the middle of the concert but he had fun in the ocean and was tired out. We want to thank xtu for the free tickets for him. He was so happy to be able to go. We are hosting another Blood drive in September. I will update as soon as I confirm the date. Thank you all for your support and prayers.
update: Daniel retic count is still high meaning is RBCs are breaking just has fast. Discussing options on what to do next.
On another note: Why I started this page is because our insurance company pays 80 percent and we pay 20 percent. His last hospital stay was over 200,000. They paid their share and now we have one hefty bill for him. That is just the hospital stay. We appreciate all the help and support for Daniel. Still waiting on the insurance company to agree to pay for the chemo treatments, they denied it and the doctor and I sent an appeal in. We applied for State funding and the castrophobic fund for children and were also denied. Sent in appeals for those also. Thank you for supporting Daniel this rare disease called Evans Syndrome/ALPS.
Update: This past week Daniel has been having alittle more energy. He pitched for the first time since may 12th, only about 10 pitches but it is a start. His rbc's still breaking down but not as fast. Giving time for the Rituzimab to work since it could take a few weeks even after the treatment to start working. He has been going out with me to the store here and there, he is addicted to crabs. He tried one and now that is all he want to eat. Going to see how he is on Saturday and get him some crabs from Bum Rogers down seaside. If he is up to the long drive. Next appointment is Weds. Remember blood drive July 25th.
Update: Daniel had his last chemo treatment on friday. His counts are higher, but his Retic is very high meaning his Rbc's are still breaking down fast. Praying the chemo starts kicking in and stops the breaking down soon. Daniel goes for his stent on Monday he has a 3mm and 8mm stones in his left ureter from all the steriods he has been on. Thank you all for you support and prayers for Daniel.
Daniel is now having kidney and liver problems. He had his 3rd Chemo today. Praying this starts to work soon Thank you for all your support and prayers while his dad is home with us. He has been working a fwe hours to keep our health benefits going.
This past relapse with Daniel really scared us. I didnt know how really bad this rare disease is. I thought he would go and get his IVIG treatment and high doses of steroids and it would make him all better like the past few times. This time was a whole different story. On Friday he woke up with a belly ache asking to stay home from school so I sent him back to bed. He didnt look jaundiced at all at 7am by the time he woke up at 3pm he was completely jaundiced fever and chills. I called the doctor right away and he got a room for us at the hospital friday night. They ordered blood for him and they could not get a match to his antibodies for over 12 hours. In that 12 hours he went critical and in ICU for five days. 7 blood units and 3 IVIGs and his counts rose to 7.9. He was then back on the hemat floor. Giving 2 more units of blood. Started Chemotherapy to help keep his counts normal range. I was nervous about getting him this treatment because I know the horror stories I have heard about Chemo. He had his 2nd this past friday in which his veins kept collapsing and they are talking about putting a port in. He is at home now, no visitors, no school and his concern is only that he cant play baseball. If only to be a kid again and upset about not playing ball. Please hug your children every night and tell them you love them because you never know what will happen. We never expected Daniel to almost lose this battle, like I said never expected the original treatment not to work. This has hit us hard knowing that we almost loss our Daniel to this rare disease called Evans Syndrome/ALPS.
Daniel is going tomorrow for his 2nd round if Chemotherapy. Please keep him in your prayers that this treatment will work. Thank you all for your support.
This fund has been set up to help with medical, travel and every day bills for the family. Daniel's dad is on unpaid family leave to be with Daniel as he fights this battle.
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.