Thursday, September 27, 2012

Some recent photos

Wednesday, September 26, 2012

Super Vinci

Let today be marked as the day I could shoot a shotgun again. Wore a shooting pad on my shoulder. Did well.

Tuesday, September 25, 2012

Hope for Hristijan

Hristijan is making small progress. He;s growing and gaining weight, but still needing transfusions and although doctors have discovered he does not have Wiskott Aldrich Syndrome, he does have some type of immunodeficiency and doctors believe he is still in need of a bone marrow transplant. hristijan will turn 1 next week.

Hristijan made it to Germany! It is believed he has Wiskott Aldrich syndrome.
It's very rare and the treatment is same as HLH. Also most of the symptoms are same.
Hristijan's family thanks you for all of your continued support.
"A Bone Marrow Transplant is planned for the middle of January. Please pray that they will find 100% compatible match donor. Hristijan still has chance's", says his father.
Hristijan is also fighting Klebsiella, a very tough bacteria.

BREAKING NEWS: The health department in Macedonia has just granted Hristijan coverage and he will be transported to Grmany for treatment next week! Please continue to pray for safe travels and comfort during the treatments he's about to endure. This will be the first time Hristijan has left the hospital since he was born on January 4, 2012. He is still waiting to transfer as of 11/6/12. If all goes well Hristijan should be transferring to a hospital in Germany for treatment next week.
Hi everyone.
We wanted to take a moment to share a story of a little boy fighting for his life. His father is doing a great job, but has hit some hard obstacles trying to get him treated for HLH. Hristijan will be 9 months old soon and he needs all your prayers to help guide people to him or help him get from Macedonia to Germany where a doctor has agreed to treat him. Please read his story by his dad and share for him. You could save his life. Currently PayPal does not work in Macedonia, but if you know of an organization that can help send funding or send it to the hospital in Germany, please let us know.
--Eric & Amanda
Hristijan's Story 
Told by his dad

On 4th of January i thought i'm luckiest man on earth.I got a son..But then the doctor come and told me my son is ILL he has some infection. I thought ok he is strong like his father.And they took him to intensive care and my world just crash down.Since that day My son and my wife are in the hospital and i never have any day outside of hospital with him.The doctors in our country couldn't find what is wrong with him.

First he was born with sepsis then burkholderia pesudomallaeu bacteria from hospital.After that there was fever, stomach with fluids and alot of diagnosis that were not correct. Pompey disease,CVID,SVID,LCH,FHLH, And now they are telling that he has HLH but unknown triggered. And there is possibility he has NOMAD syndrome.He has vomiting blood and blood was coming out of his rectum.


He needs 350000 euros(431000USD) WHICH my health insurance will cover only 80% so i need to pay 70000 euro(86200USD).The money that I dont have and we are from a country where most of the people are poor.He needs BONE MARROW transplant to live.Your donation will be for saving another human being.

UPDATE: Hristijan's insurance company has decided to deny his coverage for his to go to Germany to recieve treatment. If you know of an organization that can help him please contact at

UPDATE 10/30: You can find out how to help below or check it out on Hristijan's Facebook group his afther set up. Currently they are working to set up a paypal account, but you can donate directly to his benefit account that has been set up. Treatment has been denied and they cannot travel to another country without assistance or full payment up front. This is their only chance unless an organization can come forward to help them. 

Article featured in his country, Macedonia. Google Translate allowed me to read these in English pretty well. for ease I used google chrome which translated the whole page.

Thursday, September 20, 2012

Blood Dr and Allergy Test

Doctor appointments from 8 am to 4 pm. Dr Essex said I looked good. Went to allergy test and found out I am allergic to all kinds of stuff. Dogs cats trees goose feathers etc. good thing I don't have symptoms. Second day in a row with the pain at a decent level. With the pain low I can even walk without the brace a little. If this pain keeps getting better old Eric here I come. No more wussy Eric

Wednesday, September 19, 2012


Humera came last night after midnight. Also trying the tramidol again. I am sick of taking to many oxycodone and tylenol3. I still cannot work my fingers but they don't hurt horribly. The pain is bad but a lot better. I have a lot of joy and excitement that the new treatments might work. I think my cold is going away. Pretty scary. Still having a tough time breathing.

Monday, September 17, 2012


Had my allergy test today. Have to go back thurs for the next part.

Called Aetna and begged them to main me my new injection that was prescribed last Tuesday. They said they would try and call me back. I'm sick of the unorganized insurance companies. I think they do it on purpose. I have to scour over every bill because they try to charge me for "ops someone put in the wrong code"

I guess I'll start the humera Thursday. This pain is ridiculous. I couldn't even put on my backpack today my shoulders and elbows hurt. Still cant bend most my fingers and my pointers are starting to bend to add to the huge bumps on my thumb.

Also have a freeking cold. I am blowin my nose every minute.

Tomorrow will be a better day

Saturday, September 15, 2012

Please vote! Chase Community Giving Grant 2012

Voting is now closed!
Thank you to everyone who participated.

Please help us win a grant for the
Histiocytosis Association.
All you have to do is follow the link and vote!
Please take a moment to share the link with your friends and ask them to do the same.


Well the pain in becoming unbearable. It's had to even sit up in the morning. The birds flying out back in our feeders are beautiful. The leaves starting to change are cool. Fingers don't bend. Starting to get more calcium deposits I think, little nubs sticking out the side of my fingers like an old person. Life sucks and is great at the same time. God is cruel and great. And we all have a little nice and mean in us so try to be a little extra nice.

Thursday, September 13, 2012

Lung dr appt

Went well. I have to come back to get some tests done to make sure the amount of air/gases going in are going out correctly. They also want me to have a sleep test. He said overall my Lungs sounded fine, but they're ordering a ct scan on my chest to make sure everything looks clear and they have something to compare to when my lungs were really bad. Got to see a bunch of my doctors nurses and therapy people. Most I remembered some were blurry. It was great to see how happy they were to see me and thank them for their hard work.

No change in pain and I started noticing deformities in my fingers from the arthritis. Hopefully I can start the new injection tomorrow.

Tuesday, September 11, 2012

Married 1 year

Celebrated our 1 year anniversary this weekend. It was nice. Couldn't do too much. A lot of the pain was around.

Went to rheumatology today. Got 2 cortazone shots in the hands. They switched me from anakinra to humira and gave me tramadol. They also upped my dose prednisone. Hopefully something works.

Wednesday, September 5, 2012

Hello from Wednesday

Just getting home from work. It's been a tough few days with pain in my shoulders elbows wrists and hands. Good day at work and got set up with some work for the rest of the week.

Trying to get a cut on my leg to heal. It's not going well gonna try some different gauze tonight.

Fingers are pretty swollen and won't close.

Saturday, September 1, 2012

September is Histiocytosis Awareness Month!

It has been 7 months since I was diagnosed with HLH - Hemophagocytic Lymphohistiocytosis. I have been through harsh treatments of chemotherapy, steroids, vitamins, shots, and more medications than you can count on your hands and feet! I'm still haunted by grueling pains and discomfort from this horrible disease. 

I hope to increase awareness throughout the month and announce upcoming events and goals. I'm working on my bucket list too.Please share the Histiocytosis Assocation's website also to help raise awareness. Together we can save lives!

Share the Histiocysosis Association Page 
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