History

Friday, July 4, 2003 5:41 AM CDT

Dear friends,

We are back home. We had a nice trip and we are expecting
Hermes tomorrow morning. The funeral is scheduled for
Saturaday afternoon. We will be in touch. Best wishws to all
of you,

Marianna

Wednesday, July 2, 2003 8:21 AM CDT

We are flying to New Yourk in four hours and from there to Greece. There are no words to express my gratitude to all of you who helped us during our staying in the U.S. Thanks to all of you who signed our guestbook.
Thanks to the Greek Communnities of the U.S. who offered us a huge hug from the first moment of this hard journey. We have made so many friends here!
Hopefully the next journal message will be written in Greece.
Love and kisses to all of you!
Marianna.

Tuesday, July 1, 2003 6:04 AM CDT

So this the end of the long journey.
I want to say thank you to many people... First to Morie, Gale and all the employees of the University Inn Hotel. We spent 40 wonderful days there with our children before they were admitted to the hospital. We will never forget those days!
Thanks to all the nurses and doctors who took care of our children before their admittance (surgeons, aneasthesia doctors, ENT doctors,). I cannot remember the names of all of them but they were so good with the children...
During our staying in the PBMTU many people helped us. Most of the nurses were very sweet. Special thanks to Geneisse (God bless you Geneisse! I will never forget you), Mandy, Jenifer H., Jennifer B., Mary, Emily (thank you for making us smiling), Erika, Bethany, Kelly, Keri, Letane, Bobbie... thanks all of you. Thank you Gwen, Theresa, Sharleine, Chris.
We are grateful to our Best Buddies Rob Womack and Whitney Little. They helped us so much from the very beginning to the very end. We wish them the best of luck in their lives.
Thanks to the Rock-a-baby ladies Connie, Joanna and Rebbecca. They cannot even imagine how much they helped us. The children had some wonderful times with them.
Special thanks to Cathron Donaldson! You are very special Cathron! May all your wishes come true!
We would like to thank greek doctors Theodosia Kalfa and George Manousos for their constant support to us and also Dr Brian Quaranta for being so kind and helpful at a very hard time! The best of wishes to all of them.
We had some very hard times in the PICU but some wonderful people were there too. Julie, Daniel, Debbie, Mary-Jo, Kim...i cannot recall all the names. Thank you so much!!!
And the doctors too! How can they say so bad news in such a sweet way!
Thank you Denise and Steve for being so close to us during the last days in the Unit. Thank you for your help! God bless you and your families!
Alissa, Tracey, Ellen, Jacomien be strong! You are real fighters, all of you and the children will do very well. We will be in touch. We feel as if you are members of our family.
We want to thank all the families with transplanted children who signed our guestbook! They were a great support for us.
Finally we would like to say thank you to all the doctors,the residents (thank you Megan and Ckristie)and the nurse practicioners of the Unit. We know that they took good care of our children but at the same time we cannot avoid thinking that probably they could have done something more to save our children's lives. May God give them strength because their work is very very hard.
Thank you Jane Cash, Marion Kalbacker, Jane Schroeder, Bridget!
I don't know what else to write. I am sure that i forgot some names. In the days to come i will try to answer all your messages.
THANKS again to all of you!!!
Love,
Marianna.

Sunday, June 29, 2003 4:39 PM CDT

We all feel horrible today. My mum left earlier this afternoon. She is going back to Greece. We are leaving on Wednesday and as this date comes closer we feel even worse. We don't want to leave without our children but at the same time we want to leave this horrible place and never ever come back again.
I would like to thank Ellen, Tracey and Grandmam for visiting us yesterday and for their wonderful present.
I want to say 'thank you' to many people but i will do it tomorrow.
Hugs and kisses to all of you,
Marianna.

Saturday, June 28, 2003 2:11 PM CDT

We spent the whole morning packing our things and preparing everything for the journey back home. There were so many children's clothes and so many toys!!! We will give all of them to the Wellfare or to the Hospital.
We will keep this website for some time and we will certainly be in touch with many many people from here.
A very important part of our life, a part of our soul and of our heart will stay in Durham forever.
Thank you very much for signing our guest book. This is a great support for us.
We don't feel any guilt for bringing our children here. We wanted a better life for them. But we are very very sorry, we feel anger and disapointment because their transplants were not succesful. We hoped that they would be, because our children were strong and healthy. We still do not know what went wrong and this did not happen. We are waiting for the autopsy to be completed.
Thanks again!
Marianna.

Friday, June 27, 2003 10:52 AM CDT

Today i will have my central line taken out (i have a central line as the children did. They took white cells from me and gave them to Hermes to help his immune system fight the infections).
We are going home on Wednesday.During our last days in this country we will have the chance to say goodbye and thank you to many many people who helped us and took care of us.
Thanks all of you,
Marianna.

Friday, June 27, 2003 7:51 AM CDT

Friday, June 27, 2003 7:47 AM CDT

Friday, June 27, 2003 7:44 AM CDT

Friday, June 27, 2003 7:38 AM CDT

Today i will have my central line taken out (i have a central line placed as the children did. They took white cells from me twice a week and they gave them to Hermes to help his immune system fight the infections).
We are going home on Wednesday. During our last days in this country we will have the chance to say goodbye and thank you to many many people who helped us and took care of us.
Thanks all of you,
Marianna.

Thursday, June 26, 2003 7:15 AM CDT

it is with a very sad heart that i write these lines.We are so shocked that it is a miracle we can still walk, eat, sleep,...live.We lost both our children in less than a month! I just wonder if there can be more pain in one's soul.
In Ancient Greek tragedies the heroes were punished when they tried to fight against the Gods' wiil. It seems that we tried to fight against our destiny and the Gods got mad with us.
But we had no other choice. Only desperate parents bring their children in this Unit and make them suffer, with the only hope that they will be cured from their terrible diseases.
We came here with so many hopes!!! The diagnosis of both our children in Greece was a shock, even for the doctors.Everybody (doctors, insurance,friends and family)helped us to come to the U.S. as soon as possible to start the treatment for our children.
We arrived at Duke on January 24 ready to fight. We were happy because we could hope. Our children were even happier. The forty days we spent out of hospital before their admittance at the Unit were wonderful days. The children were so playful and happy. As if they knew...
They were happy and playful even during their treatment in the Unit. They played with their toys, they had great times with our Greek friends who visited us, they went through the painful procedures with so much patience! They kept smiling and so we could smile too.
And then the bad days came. Hermes cells did not grow and it was so painful to look at the low WBCs every day. No cells grew. Neither his nor donor cells. It was a nightmare! I cried every single day!
Aristofanis was discharged and this made us happy. At least one of them seemed to do well. But not for long. Two weeks later he became sick. We complained to the doctors but they did not seem to understand. When finally Aristofanis was readmitted he had become very sick. He only stayed at the Unit for five days and then he was transferred to the PICU. Eight horrible days in this horrible place were enough for our little baby. He passed away on May 30!!!
But we had to fight for Hermes. He had a second transplant but with so few hopes. His WBC has been zero for months! How could he fight! I prayed every day for him because i knew that he was in tremendous risk. He lost his bright mood only the last twenty days, when the mucositis appeared. When he was transferred to the PICU i knew that there was no hope for him (i don't believe in miracles) and i only prayed that this did not take long. It was good that it lasted only ten days (because i have seen kids going back and forth to the PICU for months before they finally leave).
And now we have no kids!!! We came with two WONDERFUL children in our arms and we have to go back home with no kids! It is just insane!It is unfair!
Thanks again for your support,
Marianna.

Wednesday, June 25, 2003 4:03 PM CDT

HERMES PASSED AWAY AT 14.30.!!!!!!!
Thank you very much for your support.
God bless all the children!
Mariannna.

Wednesday, June 25, 2003 10:49 AM CDT

Hermes is worse. Unfortunately he has signs of infection in his blood (sepsis). His whole body is puffy and the blood pressure is going down. We will know until the end of the day.
Thanks all of you for your support. I wish that no family ever experiences what we have lived we our children. What we live is a tragedy!!!
Marianna.

Wednesday, June 25, 2003 7:47 AM CDT

Hermes got worse yesterday evening. His whole body has become puffy, his belly is very firm and the numbers for his kidneys are going up.
Late in the evening his hematocrit went down and they gave him blood. An x-ray of his chest did not show any infection there. The liver is still OK.
We havent seen him yet today but the fact that they did not call us during the night is a good sign.
Thanks for signing our guest-book. I am not at all fluent with computers and i cannot answer the messages but i read all of them and i want to thank you for your support.
These are very hard moments for our family. Please visit our website and sign our guestbook,
thank you,
Marianna.

Tuesday, June 24, 2003 10:45 AM CDT

Day 20 (second transplant)
Hermes is about the same today. Doctors are concerned because his belly is a little bigger but the ultra-sound did not show much fluid and the liver is not much bigger.
They will watch it.
The big belly made his breath difficult yesterday but today it is better. They were able to wean the oxygen twice yesterday evening and he did well with that.
He also pooped yesterday !!! He had not pooped for nine days!!! This helped his belly to become a little smaller today.
His mouth is about the same (bad mucositis).
Thanks all of you who signed our guestbook! It is a great support for us to know that so many people pray for our little boy. We only wish we had made this webside earlier but... better late than never!
Hope tomorrow we have better news,
Marianna.

Monday, June 23, 2003 2:30 PM CDT

Day 19 (2nd transplant).
Hermes is still in the PICU. He is intubated (which means they inserted a tube in his trachea, so that he can breath) and sedated.
His mucositis is still bad but doctors say that it will take long for his mouth to be healed. The other organs (liver, kidneys, lungs, heart) are O.K. but if he gets an infection it will be very hard for him to fight it. His WBC has been very low for months now . We are expecting the new cells to grow . This will help him a lot to fight the mucositis and infections too.
I have pheresis twice a week (which means that they take white cells from me and they give them to Hermes in order to help him fight infections).
That's all for now. We hope tomorrow will be better,
Marianna.

Monday, June 23, 2003 1:33 PM CDT

Monday, June 23, 2003 1:19 PM CDT

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