There is a good chance for a cure with a transplant.

We believed that, after a year of chemotherapy at the clinic in Vienna, followed by one year of treatment in Romania, completed with very good test results, everything would end well. Tessa had been diagnosed in 2012 with acute lymphoblastic leukemia. In July 2014, doctors have agreed that Tessa should enjoy again all her age appropriate activities. And things seemed to get back to normal. Tessa enrolled in school and began preparatory class in September, full of enthusiasm.

Less than three months after the end of the maintenance therapy (involving daily chemotherapy in small doses), Tessa had a little cold and was absent from school, then she started complaining of severe and atypical headaches. We immediately had her done a full set of blood and exudate, without finding any worrying sign. We then performed an emergency MRI in Romania, which showed a sinusitis that seemed to explain the headaches. Because the first post-treatment clinical investigation was near, we went to Vienna for a routine check. Here again, the blood tests were good, EEG, EKG and ultrasound did not report any problems and Tessa was preparing for departure. Then, suddenly, three hours before the flight departure, we were called back at the emergency clinic for further investigation. At a molecular biopsy, they had found atypical blood cells. Immediately, they performed the lumbar and bone marrow punctures and in two hours the verdict that we were so afraid of was given: the illness had returned. And, again, in one second, we were locked in a hospital room, tied to a wire with poisons.

Currently, Tessa has finished the first intensive treatment unit, which lasted seven days, meaning that she has received many drugs every single day, including two spine punctures injecting the chemotherapy directly into the cerebrospinal fluid (intrathecal). In addition to the physical side effects, the psychological ones have been ravishing. Tessa hardly recovered from the initial shock. It helped us a lot to sleep one night outside the hospital, it gave her confidence again in us and the doctors.

We were praying and hoping not to get here, the risks of the treatment are much higher, but the chances of cure would also increase to 80% after transplant, according to the doctors’ prognosis. The transplant is considered mandatory according to the latest treatment protocols for the rare cases of isolated early recovery in the Central Nervous System. If the relapse had been diagnosed in the bone marrow, the chances of recovery would have been much lower. Without the transplant, the chances for Tessa’s healing would be significantly smaller and the danger of a new relapse would increase.

After the first donations received and the money we got by selling some properties and things, currently we still have in our accounts about 40,000 euros. We took great care of the money, which helped us cover all the expenses required for the two years of treatment until now (drugs, tests, secondary treatments done other clinics, plane tickets).
… We were going to donate to others the remaining amount … ..

We were very lucky to urgently get the E112 / S2 form for the first part of the treatment. The form obtained now covers only the costs for the preparatory chemotherapy treatment for transplant, not also the secondary treatment or medicines, which will have to be acquired by us. Also, and most important, the form does not cover the costs related to the transplant procedure.

The transplant procedure itself costs about 50,000 euros, to which we’ll also have to add the hospitalization costs for every day required after doing the procedure, amounting to 1,079 euro / day. We will also have to pay the costs for the sessions of radiotherapy and the subsequent care expenses related to testing and finding a suitable donor for transplant.

Based on all the estimations received so far, we will need 120,000 euros to carry out the treatment. From this total amount, currently we only have, as mentioned before, 40,000 euros. Please help us by sending this message to as many people as possible, in order to try to get the needed money for the terminating the treatment.

“God rarely shows future, and usually for one reason only: if it is a future that was written to be changed.”
Paulo Coelho, “The Alchemist”

Thank you very much everyone!

All accounts, including PayPal, are still valid:

Accounts BCR Ag. Unirea:

DONATIONS RON
RO37RNCB0082044237090006

DONATIONS EUR
RO10RNCB0082044237090007

DONATIONS USD
RO64RNCB0082044237090005

Holder: Andrei Serban CNP 1780920450027

BIC / SWIFT: RNCBROBU

Paypal Account: un_lupushor@yahoo.com

Tessa’s leukemia relapsed.

No more than 2 years and 3 months have passed since the first leukemia diagnosis… in fact the first year was a terrible one, then we had another year in fear and worry and then we experienced 3 wonderful months – which may have been “normal” for others. In September, Tessa came to us and said that Santa will come soon and she has nothing to ask for, as she already has everything she ever dreamed of: friends, school, ballet classes, toys and a puppy that she loves so much. But unfortunately this did not last… Tessa’s leukemia relapsed unexpectedly … In one day, our entire life that took so much to rebuild simply vanished again.

31.08.2014

Now we are admitted in the Vienna clinic and we all struggle not to be overrun by emotions, fears and stress, and this especially affects Tessa. A routine check-up suddenly became a tough year of medical treatments. Following the blood tests and two punctures, the doctors diagnosed the relapse of the ALL (Acute Lymphoblastic Leukemia) in the CNS (Central Nervous System) on the 9th of October, 2014. Doctors say that there are good recovery chances, but they insist in performing a Stem Cell Transplantation. We will try to keep you updated with everything that will happen, although right now it is almost impossible to describe our current state of mind. The shock that Tessa had to face when her worst nightmares came true is indescribable.

17.10.2014

Andrei Serban
Vienna, 19.10.2014

Tough times once again

We haven’t written anything for a long time because we were a little surprised by the effects of the treatment.

After we completed block M with minor problems and without any delays, we enjoyed a weeklong break during which Tessa felt very well. She played, she went on walks, drew a large pile of creations and was very happy.

On the 17th of December, we started block IIA, very similar to block IA, done at the beginning of the treatment, but only going to the hospital when the treatment was being undertaken. Again, cortisone, for a period of 4 weeks and cytostatic drugs with similar side effects.

We don’t know whether it is because our lack of objectivity when it comes to these things, but Tessa seems to feel worse in this phase than in any of the previous ones. The fact that all these problems returned has affected her morale and she almost never smiles now. When she fell for the first time during play, she got so upset that she now refuses to play anymore; she lies in bed without moving for hours, without answering our attempts to get her involved. She has difficulties in walking and can barely undertake a short walk on the street, something we have insisted on to help her muscles.

The problem is that the drugs cause her very vivid dreams and an anxiety that affects her sleep. She hasn’t slept properly in over three weeks, so she is exhausted and has been so since the beginning of this phase. She wakes up several times throughout the night and cannot fall asleep afterwards. One night, we were appalled to notice that, an hour after we had put her to bed, she got out. We realized that she was not conscious and that she was sleepwalking around the room. From that moment, we were careful to have all doors locked and to have everything tidied up, so that she would not hit anything if this happened again.

Moreover, she is always hungry. There is a continuous struggle to postpone meals on relatively fixed schedule and to not fall into the trap of letting her eat too much, because her face and belly are significantly bigger, more so than in the first block of treatment. However, by trying to keep a balance and being very careful about the digestion, we were able to avoid some of the more disturbing problems we had when we were in the hospital.

The only positive difference as compared to the first phase is that Tessa suffered fewer injuries on her lips. They were still affected, but the wounds were much easier to withstand than in the beginning. Even though, up to this point, her hair did not fall off, there were signs that this will happen soon.

We had cytostatic drugs administered on December 24, December 31, and January 7, so we spent 8 hours at the day clinic for tests and perfusions with 3 different drugs.

These weren’t the happiest holidays, but at least Santa rewarded Tessa for being so good for the entire duration of the treatment and brought her exactly what she wanted most: a castle and a toy horse. Tessa was so eager on Christmas night that she woke up at 2 am and we had to open all the presents from under the tree before going back to sleep. Moreover, we were also helped in bringing all the grandparents to be with Tessa for the holidays, so she felt as good as possible under these conditions. We hope that once the cortisone treatment stops, her physical and psychological state will improve. The doctors told us that pauses are sometimes taken during this phase of the treatment, because of very low results at tests, and Tessa could really use a break to recover.

We have several more phases in the treatment and we are likely to be here until April or May.

 

Andrei and Karin Serban
Vienna 14.01.2013

Wonderful news!

We are now halfway into the 3rd phase, block M. A very toxic drug is administered every 24 hours and then, for 3-4 days, the doctors monitor the way it is eliminated from the body. Recovery and progressive decrease of side effects is then allowed for the next 11 days. The cycle is repeated three more times, for an overall period of two months. Generally, the time one needs to spend in the hospital for each of these phases is 5 days, but we are able to complete it in 4 days. This is because Tessa is intensely hydrated and her kidneys are functioning very well. We were told that Tessa is a champion at “lulu” (pee pee). The days are very tiring, both for her and for us. We have to wake up every 2 hours throughout the time we are in the hospital and, unfortunately, the side effects are quite strong after each treatment.

However, the best news comes from the results of tests on the bone marrow, in days 33 and 78, and these is really wonderful news: in day 78, there were no cancer cells in the bone marrow, which significantly improves the chances for the cure. Practically, we were assured that we would not need to have a transplant. Moreover, the actual chances of relapse have dropped to 15 %. The doctors have informed us that, because of this excellent evolution, they have taken Tessa out of the High-Risk category, which means that treatment will no longer be the most aggressive available. The period we will have to spend away from home is around 8 months. We have faith in the treatment protocol and gratitude that the drugs have had such great results, but we also believe that a good morale is essential in the healing process. This is why we are so proud of Tessa, who is an extraordinary child and who has behaved like a small adult. She went through all the problems and pains of the treatment with great courage. We were constantly impressed by her power and will to be happy, to always have a smile on her face, no matter what difficulties she was passing through. We tried to help her keep this excellent morale with whatever means we had. We always tried to minimize the tragic or desperate moments and to focus her on the beauty and joy that she can find around and within herself. The treatment is too long for our little one to spend with worries and waiting for results. We concentrated towards channeling her energy in the direction of the joyful part of life. Happiness IS a state of mind.

Soon we will have a meeting with the doctors who will explain what the next block of treatment is all about. Anyhow, we will undergo intensive treatment until February. Our hope is to arrive home before Tessa’s birthday, on the 10th of April. After the treatment in the hospital is completed, chemo treatment will continue for a period of 2 years, during which we will have to make regular trips to Vienna for tests and monitoring. 4 months have passed and many more will before we can actually say the worst is over, but, since we were pushed down this path, we might as well walk the road with optimism.

 

Andrei and Karin Serban
Vienna 07.11.2012

It’s tough, but we are moving forward

Honestly, it becomes more and more delicate to describe what is happening to Tessa, considering that from a medical standpoint, everything evolves on the same positive trend and there are no reasons to worry. Nevertheless, Tessa has changed a lot over the past week, both physically and emotionally.

The treatment’s side effects – which in the beginning manifest themselves only on paper, through the daily blood tests – are now more visible than ever. The doctors have warned us and, furthermore, we have talked to other parents who have been through similar experiences. Therefore, we were prepared; we knew what to expect. However, this does not mean that it is easier on Tessa and it will be worse than this before it will be better.

I will not detail all the side effects; they are too delicate and personal to publish. However, her now reduced immunity caused, among others, wounds on her lips and gums, making each bite to be a torment, even with painkillers. On the other hand, the cortisone induces her a state of hunger. Tessa finds herself in a continuous struggle between passing hunger or suffering due to the wounds around her mouth.

There have been a few physical changes as well: her cheeks and belly are bigger, her arms and legs thinner, the hair started to fall off, but all these will come back to normal once the treatment is over. Tessa accepted to cut her princess-like hair (of which she was very proud) only when mummy did the same. Now she understands and agreed to cut it even shorter when it will start falling even more; she knows it will grow back and that now is a sign the treatment is working and she will be all right.

Another side effect is the continuous state of anxiety and the impossibility of taking control over her emotions. It is tough on us to see her always upset, unhappy and not to be able to cheer her up. Karin thought that at the end of the day, the number of smiles we managed to steal from Tessa measures success for us, parents. Monday she smiled 3 times, Tuesday only once.

After so many general anaesthetics, central lines, medicines and side effects, the sparkle in her eyes appears seldom, but she still finds the strength to draw, paint or learn a new game every now and then. For each of the treatment steps she receives a colourful bead that we place on a string, a special string showing the way to cure.

Monday, 13.08, will be a very important day, the 33rd day of the treatment. We won’t receive any assurance, but it is the end of the first cycle. The result of the spinal exam will be frozen and later on compared to the results of the 72nd treatment day. Only then we will be able to receive a forecast.

 

Andrei and Karin Serban
Vienna 08.08.2012

Good News!

Thursday, 26.07.2012 was the 15th treatment day. It meant performing the second chemotherapy, as well as a new set of tests. We found out the results only on Friday, but the news is excellent all the way: the level of “bad cells” in the spine fluid has lowered significantly.

Tessa has good days and not so good days. She is pain-free and her general state shows a positive trend. But sometimes, the medicine’s side effects manifest through fatigue, appetite loss or, on the contrary, exaggerated appetite, depression.   The treatment has not caused, up to now, significant side effects and we try to keep Tessa’s spirit up through games and sport, as much as possible within the limits of our surroundings. There is no worrying aspect in Tessa’s evolution up to the moment and we believe that, given the positive evolution trend up to the 33rd treatment day, we might escape the “high-risk” diagnosis.

To make sure she understands what is going on, we told her why she is sick and why we need to be in a hospital so far away from family and friends. It was very helpful to receive a little book from the clinic explaining, with cartoons, the stages of the treatment and the side effects. The story begins with a little girl and a little boy, each having different body parts: tummy, heart, hands, eyes, hair. Each of these parts is made of by cells, many, many cells, invisible to the naked eye. There are some big, beautiful, strong cells that protect our body from diseases. All cells get along very well, they dance together and they are happy. Then we are very happy, we are feeling well. All of the sudden, there are also some new cells, bad, small, yellow, spiky cells, which are not friendly, they don’t play nicely and disturb the other cells. And then we are not happy anymore.

The big, red cells are trying to protect us, fighting off the bad ones. They hit them hard, make them dizzy and kick them out. But the yellow cells are too many, they multiply and cannot be all kicked out by the red cells. The yellow cells also know how to hide away, they stay there and make us feel sick. This is the moment when we need to go to the hospital. Here they have a special treatment, full of strong cells, wearing glasses and a hat. They enter our body and start helping the red cells. They search for the yellow ones, find them and eat them. The friends from the medicine don’t see very well all the time (as they wear glasses) and sometimes they hit some good cells: like the ones for the tummy, and that’s when we have a tummy ache, or the ones for the hair, and then we lose a bit of hair. But it is important that all the yellow cells will be destroyed and then we will feel very good again.

Tessa listened to the story a few times, now she knows it by heart. She understood the importance of medicine and now she takes them according to the schedule, even if it doesn’t taste good. Also, when she received chemo-therapy, she keeps her arm steady to receive the good cells. And when she goes to the bathroom, she says happily: “Mommy, come and see, I got two more of those yellow, bad ones out”. I know, in a perfect world, kids should not learn such stories.  Our daughter should not look at us among tears and ask, as the nurse tries to install a central line: “Mommy, did they catch the vein, did they?”

Leukemia is not 100% known to the doctors. They do not know what causes it, what makes it appear in our body. 40 years ago, it had 0 survival rate. There has been huge progress in its treatment, but only through experimental studies, through theory and statistics. It means that even if right now the survival rate is high, the doctors do not know why some kids do not respond to the treatment at all. They monitor the patients closely, immediately identify reactions and side effects, without understanding what truly happens in the body, at an informational level. That is why no one can guarantee you are risk-free or not. If within 5 years from the first treatment the disease has not come back, you are cured. That is why there is a control program for the disease comprised of periodical tests for about 5-7 years after the treatment.

As it was explained to us at the Fundeni Institute as well, each child has a different reaction to both the disease and the treatment. We saw this around us, at the St Anna clinic: an Austrian little boy, 4 years old, even after the 6th month of treatment, shows no side effects. A Turkish little buy diagnosed at 3.5 years old and treated at the same clinic, came back after 1 year, as the disease relapsed. A 4 year old girl amazed the doctors with her fast response after only 6 months of treatment.

We are aware of the long journey ahead of us, with sufferings and incertitude, but we need to follow the doctors’ advice and enjoy every good day, be happy about each piece of good news. With patience, we hope to win this battle!

Andrei Serban
Vienna, 29.07.2012

Tessa began her treatment

First, I apologize to all of you who waited for a sign, for news on Tessa’s development. Since the first text I wrote, in the weekend, four days have passed, the longest and most intense of our lives. Nonetheless, internet access was scarce, allowing us to answer with great difficulty even the vital e-mails related to the treatment.

Immediately after diagnose, we dedicated ourselves fully to obtaining the most suitable treatment for Tessa, in the shortest possible time, so that she would have the best conditions to fight. We are fortunate to have around amazing friends whom immediately took over any extra tasks. Furthermore, in this battle against bureaucracy and cellular enemies I encountered, frankly speaking, an army of angels who fought right next to us. I will not mention them, fearing I might involuntarily forget any of their names.

The good news is that we won the first battle, the only one that was within our reach. Tessa receives now treatment at Saint Anna clinic in Vienna, Austria, probably the best place for treating children with cancer. It was anything but easy. We needed to fight hard at each stage, but we managed in record time to put together the medical file, to be accepted by the clinic and to obtain the S2 (W112) form, which covers the expenses for the first month of chemotherapy.

Yesterday, Thursday 19.07, took place the official presentation of the disease and treatment. A hospital committee, made up by the chief of the clinic, 2 doctors, 1 psychologist and an official translator provided by them, explained to us thoroughly Tessa’s diagnose, the disease’s seriousness and development stage, the treatment protocol and the effects of each medicine, both positive and negative.

Despite our high hopes, Tessa’s disease was categorized as High-Risk Leukemia, confirming the diagnose given by the Fundeni Institute in Bucharest, on which the medical file for admittance in Vienna was based.  The consequences of such diagnose are a longer and more intense treatment, stronger drugs, for a period no shorter than 9 – 12 months. This will continue for another year with periodic treatment, outside the hospital, followed by regular come backs to the clinic for the following 5-7 years.

Of course, a more intense treatment brings along the corresponding secondary effects. While the doctor was detailing all the possible consequences, I was trying to fix my eyes on cracks in the walls. I couldn’t bear listening in how many ways her little body could be affected. I cannot tell you all the details of that meeting. I simply refuse to recall them.

Tessa began the chemotherapy shortly after. About all the medical aspects I came across in Romania and Austria I shall try to write shortly in another section of the website.

In order to avoid any missunderstandings, the financial situation looks like this:

  • When we found out about the disease, our savings were no more than a few thousand euros.
  • We borrowed from friends as much as we could in order to leave quickly to Vienna.
  • We paid for transport and the downpayment at the clinic.
  • We obtained the form that covers the first month of treatment
  • We hope the form will cover up to 3 months of the treatment, based on the medical file.
  • The state does not cover extra expenses – lab tests, further medication.
  • There are other costs – rent paid for the accommodation next to the hospital, day to day expenses in a foreign city, traveling. We are minimizing these expenses as much as possible, in order to save everything for the treatment.

Thank you all of you who donated and will donate for Tessa, as each small amount makes a difference.

We shall keep you updated with the development of the financial situation and we assure you that all money received will be carefully used in order to reach the total amount needed for this long-term treatment.

Tessa, Mom and Dad thank sincerely to all of Tessa’s friends who are thinking about her and helping her in any way. We are convinced that all this positive energy can only lead to a happy ending.

Andrei Serban

20.07.2012

Tessa, a little girl suffering from leukemia, needs our help!

Tessa is 3 years and 3 months old, a pretty little girl, joyful, beautiful and very smart: she attracts attention and admiration everywhere she goes. She already knows many numbers and letters, songs and poems. Going to the park is what she loves most and wishes she‘d have a dog to walk outside.

Recently, Tessa was diagnosed with a disease too serious and too tough for her fragile body: High-Risk Leukemia. The bad news brought along tears, worries and triggered the toughest battle, each minute being priceless.

As she adores Mickey Mouse and Minny, her parents hoped one day to offer her a nice trip to meet her cartoon friends. But now they have another challenge: going to an unexpected trip, not the easiest, but surely the most important for the life, a trip that can bring her better chances to fight the disease than any other treatment she could obtain in Romania.

The girl does not understand what is happening, why the people around are so sad, why her never-ending energy is all of a sudden gone, she gets easily tired and her hearing is dropping. She now spends more time in a hospital bed connected to an IV-line than playing in the park with the other healthy children.

Tessa needs your help, each one of you, so she can come back next year, or maybe the one after, to her room and her bed at home, to her colorful world.

Any donation to one of the below accounts is more than welcomed and increases her chances of recovery, of becoming the sweet, healthy and smiling little girl as soon as possible.

Accounts BCR

DONATIONS  LEI
RO37RNCB0082044237090006

DONATIONS EUR
RO10RNCB0082044237090007

DONATIONS USD
RO64RNCB0082044237090005

Account holder: Andrei Serban    CNP   1780920450027

Cod BIC/SWIFT :   RNCBROBU

New information will be uploaded to the website as often as possible. Please return for details.

Posted in Uncategorized | 1 Reply