Friends of Super Nico

I can't believe I am writing this. I can't believe WE need this. THIS is something I swore I would never do for ourselves. I guess I have learned never say never. But it really isn't a choice now, and something we don't take lightly. Its pride, embarassment & not knowing how to ask for help. We like to do for others. 
A year & 4 months ago our healthy little boy was playing on the trampoline & I saw a black dot I KNEW was bad. Just knew. Pit in the stomach. I was told I was crazy..lt was a bruise that didn't spread from others.  No, a mom knows. The next day dots appeared on his beautiful body, but I assumed they were heat rash. It was May & I could justify. That night nose bleeds that wouldn't stop. So I decided take him to the dr & he would tell me I was crazy....he had a sinus infection. 
Long story short when we got there I told our dr tell me I am crazy. He said, "mom, you are not crazy...he needs stat blood work. In 30 minutes we will know if he needs a room at childrens." Of course I asked for what & was told 1. itp, 2. bone marrow failure or 3. lukemia. We pulled his sister out of school, and dad out of work b/c this was a family matter. We  werent'even feeding Nico his snackin the cafeteria when we got the call his platelets were dangerously low & there was a room ready for him at Childrens New Brunswick & the chief of NJ Cancer Institute was meeting us.   (Writing this is making me cry...this is so hard reliving) 
We were there for about a week running tests to be told he had itp. He would outgrow it. Condensed version we were then told he had nutrapenia - low nutraphils...he would outgrow it. 
Fast forward...he didnt. We needed bone marrow biopsies. We both truthfully fell apart. We couldnt be near each other without getting emotional  & Mikayla was our rock. She has been through things a sibling shouldnt but she kept us strong. She is amazing! Somehow she said & did the right things.
After the test we were told it was not lukemia but more results would come. We were relieved we thought...not lukemia, not cancer.....nothing could be as bad. Its terrible when you have a sick child you compare conditions. I guess we would soon find out there were other things as bad. Platelet transfusions, Steroids didnt work. The tests showed he had Evans Disease. Something less than 1000 kids world wide have. Something considered an orphan disease b/c its rare & really there isn't funding or research on it. Its best comparable to lukemia. Its a rare autoimmune disorder where his red and white cells destruct & destroy his own body.  He also has nutrapenia - where he doesnt produce enough nutraphils which are the primary defense against infection. And itp which is a bleeding disorder where your blood doesnt clot. Treatments range from oral medicine, to chemotherapy, to stem cell and bone marrow transplant. Our most current tests we are waiting for are to see where his t cells break down to see if he is a candidate for bone marrow or stem cell transplant. 
When Nico has good numbers he can live life almost like any other child. Though we are in a constant fear. Many things like a cut, bug bite, cold are life threatening to him. We constantly hear "but he doesnt look sick". That kept us in denial a LONG time, looking sick & being sick are two different things. The tests don't lie.  However a cold to someone is life threatening to him. So his life is sort of a bubble. He does things based on his numbers. He isn't allowed school - activites. He cant have vaccines and we don't know yet if any of his vaccines held. He will never have a life vaccine or can be near someone who has had one...life threatening for him.  We tried soccer one week, and then he got sick and was pulled. A 100.4 fever is an automatic hospital trip with iv antibiotics. It often leads to a stay with ivig platelets, steroids etc to get him to a temporary  "safe" level.  Which hasn't held very long...ever. 
In Winter Nico was put on almost full  isolalation & his daddy had to close his gym to stay home with him. Mommy carries the insurance so this wasnt an option. Tho we both went to every big appointment & the family stays when he is in the hospital. We have both worked as much as we can through out this entire time and do still. We have poured ourselves into helping others. Once we got past the initial shock we stay pretty strong & positive. We have collected toys, we have helped with blood drives, promoted his illness, done walk a thons & organized dances. Ultimatley we don't want help....we need it. What we have realized is that having such a rare condition also means there are no organizations besides Embrace to help you.  If there are we havent found them. If so we would be seeking help from them instead.
We still smile everyday because we are blessed to still have Nico & each other. We don't know our tomorrows...in fact we don't know our todays & it is scary. But if our story can inspire others to still smile, and see the good it is worth it. We've met some amazing people. Weve learned whats really important in life. So much that maybe weve avoided some reality too. There is no braver boy than Nico in our minds.  He can explain blood clots, medicine, take a blood draw or iv like a champ (well..not an iv...hates them!) But he gets germs...he gets compassion in a way i have NEVER seen a 3 year old get it. He is still the happiest little boy around and can have fun anywhere. I often wondered why this happened to him & we can honestly say he has purpose & learned it young. We go to clinice and he lights up the place. He can make friends with anyone. He is meant to change people & inspire them. Dont know what we would do without him. He inspires us all to be a little kinder, complain a lot less & always fight on with a smile. 
Even with insurance bills pile up, there are co pays, hospital stays, daily medicine, parking (why do you have to pay as a guest to park /valet etc??) food there....Add in shutting a business. Add in trying to keep life normal (family has helped a lot) & the day to day expenses of electric, mortage etc. We were told parts of this could go away - he could go into remission. He hasn't. 
We were sure we would be further along then we are now. We are not. Infact, we had set backs and medically aren't much further than we were on May 22 - 14 months ago when he was diagnosed. We go to NJ Cancer Institute & they are amazing. We consult with CHOP & drs in Cincinatti & we hope....we hold on & we fight....EVERY SINGLE DAY. People often ask where do you get your strength & I can only answer "I don't know when you believe things will be okay  you just do" 
Im surprised by the love we have felt...the support groups we have found...Embrace Kids has been our lifeline...friends sending coloring books, stickers, ideas, shirts with great sayings....but sadly it's not enough....We appreciate you all....but truth be told we don't know whats next & thats terryfying. We  know if there were less things to worry about that our next steps would  be easier to push forward. Finanacial worry on top of this is stressful. We will not give up....we will not stop helping others....and we will continue to share our story in hopes it inspires others. Every day together really is a gift! 
Tomorrow, September 13th  Nico will be 4. We didn't plan anything b/c last year he was in the hospital & this currently hes having some bleeding issues. We had a new med & made 4 days blood free...but hes had them the past 2 days...and bad ones.  We are waiting for other tests to see whats next...We appreciate you helping us in this journey in any way you can....this is hard for us to ask for....
Please feel free to share our story....we are....#evansstrong