Bibi and his first spring

Spring has finally come to Mangalia and it is delightful to see Bibi discover all the things around him. He is already a 9 months old boy who has begun to grow again - he is now able to stand up without help and take solid steps, when being supported. During the steroid therapy his growth had halted and he presented the specific physical characteristics of someone taking steroids.

I can`t believe time has gone by so fast. It feels like yesterday - this time last year - when I was waiting impatiently for his arrival. Now, there is something new every day: he knows to get his cheek close to my lips when I ask for a kiss, he is arguing with us in baby talk and even takes over the conversation when he feels like it.

This Tuesday he had his 10th blood transfusion and next week will do extensive analysis that will show the iron concentration in his blood, accumulated in the last months. It will be a hard day for us. The good news is that he did not get any disease inherent to blood transfusion ( eg. hepatitis), but as long as he is transfusion dependent, he will be in danger.

While I was writing this post I got a message that Bibi`s story was published on http://cabral.ro/.

There is an error, the human body can stand 300 transfusion, not 30 - but they are both friends and enemies: friends because they save our child each month and enemies because they are the reason for iron overcharge, iron that will eventually interfere with the body`s major organs - especially in a highly developing organism such as is that of a 9 month old

Thak you Lala and thank you from the bottom of our hearts, Cabral!

Have a great spring and may you find joy in all the small gestures of your dear ones around you, as we cherish each second that we spend with Bibi`s smile.

Bibi`s story in "Jurnalul National" newspaper

Lately, we have little time for writing - we juggle between blood counts, hospitals and authorities trying at the same time to keep a routine for Bibi`s comfort. I just wanted to let you know you can read about Bibi in a leading national newspaper in Romania, Jurnalul National.
http://www.jurnalul.ro/via-s-n-toas/starea-de-sanatate/tinut-in-viata-cu-transfuzii-569638.html

We would like to give thanks to everybody who contributed to have our story published.

Thanks to all our friends

You know the saying: help comes when you least expect it? well, last weekend we had the privilege to learn we have many friends and to acknowledge the fact that Bibi has won the heart of the town that adopted me, Mnagalia. Rotary Club Mangalia and Agon Theatre from ConstantaTeatrul Agon Constanta have organizes a benefit show and the funds entered the club accounts to be used by Bibi when he will most need them:for the bill for the bone marrow transplant.

Many thanks to all the exceptional actors, to all the members that were involved in the promotion of the benefit show, to the media, the local companies that contributed and not in the least The Town Hall and the Local Council.

Also, I would like to acknowledge everybody who came to see the show and enjoyed it to its last line. It was a surprise to see so many young people in the audience.

We can only be optimistic that will gather all the funds needed in time for Bibi to have the BMT and become a healthy young man who will be able to appreciate and give thanks to everybody!

Thank you, dear friends!

We have been to the Holy Land!

As I told you before, we have had the highest hopes in the doctors from Hadassah Hospital in Jerusalem. We have just returned after ten days of investigations and meetings with a team of real professionals and extraordinary people.

Bibi was taken a new bone marrow sample and while he was under anesthesia they took all the blood necessary for the rest of hematological and genetic tests. It was a great relief for me, as a mother, not to see him in tears and trying to escape the needles.

Their recommendation was, unfortunately, the one we were afraid of: bone marrow transplant. And because Bibi is still very little, we will try another medicated alternative and pray to God that it works and as Bibi`s grandma says:"" the hemoglobin factory will start running”.

At the hospital, in Jerusalem, we were surprised to find a Romanian nun, fluent in several languages - Hebrew, Arabic, Russian, Greek, and Romanian - who would help anyone who needed a comforting word or a translator with the doctors. She insisted that Bibi receives the blessing from the priests at the Holy Sepulcher and the Romanian Church and for that, we thank God we met her. I did not think there were still people with warm souls, who in kindness and humility live only for the good of others.

I know she is not familiar with the technology and will not see this post but "Thank you Sister Mary!"

Season`s Greetings!

It has been a quiet Christmas. We are preparing the last details for our trip to Hadassah Hospital. All our hopes are with them right now.

Happy Holidays to you all!

We have teeth, hurray!

Tuesday was transfusion day. It is getting harder and harder to keep Bibi still during the transfusion.The veins on his hands and feet are no good and we had to place the transfusion line on his head. It was heartbreaking to see him screaming with pain and looking at me with his big eyes that said:"mommy, why do you let them do this to me?". He calmed down when I held him and we stood like this for an hour and a half.

We came home in the afternoon and to my surprise, while cleaning his mouth, I found a bit of tooth coming out of a sore red gum. It is white and very, very sharp! Hurray for Bibi!

Bibi`s story

Bibi`s name is actually Tudor-Daniel, but this is the name we call him by. He`s just turned six months and is a happy baby. Because he has parents and grandparents who looove him.

For more than four months now, we - as parents -, are fighting the uncertainty of medical science, as our son was diagnosed with a terrifying disease: Aplastic anemia, in evaluation for Diamond-Blackfan syndrome, shortly DBA.

What is DBA?

The Diamond-Blackfan syndrome is a type of anemia of which they do not know the cause. It is a very rare disease ( at the moment, there are approx.600 recorded cases worldwide). It manifests as the inability of the bone marrow to produce hemoglobine (the red cells of the blood).

How does Bibi react to the prescribed treatment?

In most DBA cases they apply corticosteroid therapy, which, in theory, keeps it under control. The only known curable alternative is bone marrow transplant from a compatible donor . Bibi has been on Prednisone- the most common corticosteroid- for more than three months now and unfortunately there are no results. The only thing keeping him alive are the monthly blood transfusions that, on the other hand, overload his body with iron.

Our plans for the future

At the moment we are planning a trip to Haddasah hospital in Jerusalem, Israel for a second medical opinion and more investigations ( a new bone marrow biopsy, extensive hematological tests, genetic tests and HLA matching).We are really hoping for improvement of his condition.

The aim of this blog is to keep a public record of his evolution and make his life known to all who want to read about our experience through life. I know that my son wants a happy healthy life and we will do everything in our power to achieve this.

I am posting links to his clinical history so far and the results of his first bone marrow biopsy.

De la living with DBA

De la living with DBA