Hi Everyone... I have some great news!!  I had my last checkup since October of this year where I was told I was in partial remission.  All of my counts were slightly below normal, but at an acceptable level with the exception of my platelet count which was in the 80's.  I am very happy to announce that my hemoglobin and neutrophil counts are now above the normal mark with my platelets following not far behind at an acceptable 112 and climbing.  As all my counts are now at an acceptable level I am in full remission!!! But that's not all... If my platelets reach the 150 mark or above I will have made it to FULL RECOVERY...  Meaning all my counts have made it back within a normal range...  Sadly, only 10% of patients suffering from Aplastic Anemia ever reach this state.  To all those out there going through this illness... I know it'a tough.  It sucks.  It limits you from doing so many things and the treatments aren't easy.  But if I can give you some advice it's this... stay positive!  Take it one day at a time and don't get caught up in "what if" scenarios and future predictions... (I did this sometimes and it really gets you nowhere but angry and depressed)... surround yourself with people who love and care about you.  Go out and laugh with friends.  Your body's trying to mend itself back to health, the last thing you want to do it stress it out... Finally... Wishes, dreams, prayer, miracles... whatever you want to call it or whatever you believe in... they definitely do come true.

 

James

Hi everyone... Sorry I've taken so long to update my website... I've been trying to do as much as possible since being trapped in my house for what felt like an eternity these past months... I had another appointment a few weeks ago and everything still seems like it's on track... My counts dipped a bit, but it's nothing to be worried about.  The good news is that my platelets are on the rise, which was concerning me before... so it's good news to hear that they are up.  I am still in partial remission and waiting for my platelets to reach 100... with any luck I hope to be there before the end of this year...  I am also pleased to be going back to work fairly shortly... It's been such a crazy year that I am just glad things are getting back to normal.  My goal is to be ready to play soccer again by next summer.  My doctor recommended I should start some light exercising, so we'll see how that goes.  I am also going to try and update the website with more FAQs and such... If anyone has any questions about the disease that you would like to see in the FAQ section, or if you are going through this illness and need some advice, drop me an email anytime.  Please keep in mind that I am not a doctor and cannot answer many of the questions I've been receiving so far... the best I can do is offer an opinion from my personal experience.  Please speak with your doctor if you are in need of any medical advice.

 

Thanks,

 

James Ilari

Hi everyone... I returned from Princess Margaret this Wednesday June 17, 2009 with some GREAT NEWS!!  My hemoglobin and neutrophils are just below normal, but have risen substantially.  My platelets have begun to rise again but unfortunately are lagging behind a little.  The doctor announced that I am now in PARTIAL REMISSION!  Full remission will be when my platelet counts reach 100... currently they are at 51.  I will be seeing the doctor again in 6 weeks... I'm hoping everything keeps going the same as I am really looking forward to this summer.  With my 25th birthday coming up in 9 days I couldn't ask for a better gift.  I just want to thank everyone again for helping me through this... It has been a challenging year and I couldn't have pulled through without the love and support I received from my family, friends, and so many others.

 

Thank you,

 

James

Hi everyone... I returned from Princess Margaret this past Wednesday with some good news.  My hemoglobin and neutrophils are continuing to rise.  My platelets dipped just a bit, but not enough to cause concern.  I will be seeing the doctor again in a few weeks, but I am happy to announce that they have removed my hiccman line!  It feels great to not have tubes dangling out of my chest... Although I was warned about the relapse percentages (~30%), the doctor feels  that the treatment is working very well and considering the length of time (~10 weeks) without a transfusion, it was time to remove it.  At this point all I can hope for is that my recovery continues down this path and my counts hopefully return to normal.  I will be posting an article about my experience with the removal of the hiccman line in the Treatments & Procedures section for any who are interested... please check back for that soon.

 

James

Hi everyone... just wanted to give a quick update on my status.  I went to Princess Margaret today for my routine blood test and cell count.  Great news!!!  All my counts seem to be improving rather quickly.  My hemoglobin has reached 102 (no transfusions in 3 weeks), my platelets are at 46 (no transfusions in 6 weeks), and my neutrophils are at 1.4.  These numbers are the highest they've ever been since being diagnosed!... Although the doctors will not comment on whether or not the treatment is working, they believe this is very encouraging.  I continue to look forward to what I believe will be a full recovery and want to thank everyone once again for your kindness, love, and support.

 

James

THEY FOUND A MATCH!!!!

 

Hey everyone... Just wanted to let you know they found a perfect match!!  10 out of 10.  The doctor told me yesterday morning at PMH and I was ecstatic.  It is such a relief to know there is someone out there that could potentially save my life.  I want to thank everyone for their continued support throughout this journey...  It is because of all of you that we have received this good news.  Everyone from friends, family, family in Italy, the Church, and even total strangers pulled together and spread my story urging people to become a donor...  Someone out there listened and my family and I couldn't be happier.  From the bottom of my heart, thank you... I will never forget what many of you did for me and for that I am eternally grateful.

 

What does this mean?

 

I've had a lot of people ask me... "what does finding a bone marrow donor mean?", "what are the next steps?"... Finding a donor match is extremely good news... It brings a sense of relief to me to know there is this option available, which is also the only cure for Aplastic Anemia.  However, the course of action taken to treat this disease for my situation is as follows: