Matthias story

Our son was born on the 11th November 2007 by caesarian section, at Northwick Park Hospital. After a traumatic labour of 18 hours during which my wife suffered a very high temperature, Matthias came into the world, also with temperature of 39.4’C. The next day he stopped breathing, but the hospital notes were inconclusive. Matthias failed his first hearing test, and his blood results revealed an infection/inflammation in his system, for which he was treated with antibiotics. After five days mother and son were discharged home.

After leaving hospital, everything seemed to be progressing normally, and our son received the recommended vaccinations. At five months we noticed that his development seemed somehow different, and much slower than expected. At eight months he appeared to be having strange episodes, or absences. These manifested themselves by Matthias becoming completely immobile, staring into space whilst seemingly focusing on one point. This was accompanied by dribble coming from the right side of his mouth.

Consequently when we went to the GP, he chose to ignore our concerns, with an explanation that we were just over worried first time parents! After numerous and repeated visits, the doctor informed us that the dribbling was perfectly normal and symptomatic of teething and or a temperature in young child.

With time, the frequency of these attacks increased, whilst the symptoms changed and got worse. Our son blocked out, would then fall on his right side, and then went to sleep for 2-3 hours. We attempted to get help from the local paediatrician, who maintained that this kind of behavior in children was normal, and that our son would grow out of it. The fact that Matthias was nearly 2,5 years old at the time, and not talking. He was diagnosed as autism!

After much frustration and effort, we finally got a referral to a neurologist, who said that he would send Matthias for an EEG, but at the same time declared that he had sinister concerns about our son’s health. The test was not performed successfully, as Matthias had received insufficient sedation.

In the meantime we were still in the dark, and no better informed about the condition of our son. We then took matters into our own hands out of sheer desperation, and travelled to Poland, where we paid privately for brain scan (CT). The results showed that there was evidence of calcification within a fluid space of 3x3cm in the deep structures, and the left temporal lobe. This did not change after giving a contrast medium. The image suggested an intra-cerebral haematoma suffered in the past.

The Polish neurologist suggested we go back to our doctor and ask for the so-called angio MRI, which reveal the problem more clearly.

Upon returning to the UK, and showing the scan results to the doctor, we were treated very badly. We thought probably because we had dared to question the previous verdict.

At long last an MRI scan was performed and Matthias was diagnosed with GliomatosisCerebri/Astroglial  tumour. Nobody was interesting or took into account, the opinion or results of the tests done in Poland. These were completely ignored!

In September 2010 we were referred t Great Ormond Street Hospital, where Matthias subsequently underwent surgery. A biopsy confirmed a diagnosis of GliomatosiCerebri grade II/III. In October he began aggressive and gruelling course of chemotherapy (Infant Protocol for High Grade Gliomas) which he completed on May 2011. After a few weeks break he resumed chemotherapy (oral-temozolomide)| which was finished in 2012.

After an MRI Scan in May 2012 GOSH confirmed that the tumor had grown and recommended radiotherapy to start immediately.

At this point we decided to seek a second opinion, someone with fresh unbiased  approach. Professor Richard Grundy (of Paediatric Neuro-Oncology and Cancer Biology in Nottingham) undertook this responsibility. After studying the available evidence from GOSH, he requested them to perform a specialist MR Perfusion Scan. GOSH refused. We don’t know why. Professor Grundy then agreed to have this done in Nottingham. After obtaining the results, it was mutually agreed by ourselves and the Professor on the tactic of wait and observe.

In October 2012 we frequently had to go to the local hospital in Hillingdon (local hospital) as Matthias often suffered with high temperature for no apparent reason. In spite of regular blood, urine, and faeces tests the doctors couldn’t find a cause. He also had many white cysts around his head and neck.

 

So pre planned MRI scan was brought forward. Results showed significant increase in the solid and cystic components of residual tumour in the left ventricle and associated mid line shift.

In the meantime the temperatures abated.

When the doctor examined the results of the scan he was amazed, and couldn’t understand how and why our son was in such a good form. Apart from the fact that he dragged his right leg behind him more than usual, and had limited use of his right hand, Matthias appeared to be in very good condition.

It was decided to perform another operation to remove a large cyst (abyss??), to be followed by radiotherapy. We stated categorically that we do not agree to the radiotherapy until we had concrete evidence, and results from the ensuing biopsy, as we wanted to know exactly what we were dealing with.

After receiving the results of the biopsy, we were informed that the second operation had been performed solely on the condition that Matthias would undergo radiotherapy. He was now diagnosed with Glioblastoma Multiform grade IV and his prognosis was extremely poor.

However an identical sample was send to Prof. Grundy where it was tested by 3 different pathologists all of whom agreed that on purely histological grounds we would favour the diagnosis of Pilocytic Astrocytoma (grade I) but understand this is at variance with the recent aggressive clinical behaviour.

These results contradicted the opinions of GOSH.

We were told that without radiotherapy he would only have 6-9 months left to live, but with treatment possibly 12.

We declined, and made the heartbreaking decision that we didn’t want to our son to suffer just for the sake of 3 extra months! We were going to give him the best quality of live possible, for the limited amount of time left to him.

However, there was one alternative option which we seriously considered might be open to us i.e. Proton Beam Therapy. We made a determined and conscious decision to go via this route instead of conventional radiotherapy, as the side effects were less extreme.

The panel doctors at GOSH flatly refused our application-the reason given was that they consider our son had such a poor prognosis. That he didn’t warrant such treatment. The door was firmly slammed shut, and our son is still with us?? Months later!!!

At this point (March 2013) we decided to fight and not give up. We contacted a private clinic in Germany, who could perform the proton procedure and we would pay for it ourselves. They requested all the relevant documents.

Whilst waiting for the German Clinic, Matthias had another scan at GOSH in February 2013, which disclosed minor changes of the tumour and again radiotherapy was endorsed. We decided to wait.

We were and still are searching for the real answer as to what is wrong with our son and even clinic in Germany had their doubts as to diagnosis of GOSH, and requested us to do a PET-FET Scan, which the hospital flatly refused to do even though we offered to pay. It was at this point that we took all of our savings and travelled to Germany to do the scan.

Again the results were inconclusive, and Germans recommended performing lumbar puncture which was done in October 2013.The results were clear. However when we requested the doctor at GOSH to give us detailed breakdown of chemistry and pathology, he refused and said it wasn’t available. Why?

Again this was followed up by a further MRI scan in October which showed some changes in the structure of the tumour.

On January we finally found professor in Germany who kindly agreed to check all the documents (including our story since Matthias was born and documents from Poland) and made the decision about operation which needs to be done as soon as possible.

 

After the surgery in Germany Matthias was fine. We had few happy months and just focus on physiotherapy.

 

Unfortunately, toumorstarted to grow back, and his life is still in danger.

We will not give up in the fight for Matthias’s life!!!
It’s been 6 years from the first operation and Matthias is still fighting!
So far Matthias has had 7 brain surgeries after which the tumour renews and expands!
We see no point in further operations, so we are looking for other treatments. that is why we are trying to raise money for pioneering treatment of immunotherapy in Germany.
Immunotherapy is the new but promising non-surgical method to fight the brain tumour.
These treatments are known in the UK but not available for Matthias because they are still in a trial phase.

The immunotherapy will be a compilation of treatments such:
– antisense GcMaf Therapy,
– dendritic Cell Vaccines,
– oncolytic viruses,
– hyperthermia.

Total cost is aproxemetly €59 000!!!

As the immunotherapy is not sponsored by NHS we need to ask YOU for help.

We know that we asked for your help in the past. Thanks to your help our son is still alive!!!
However, we have to ask you for help again.
Please help us raise money for Matthias.
We can not give up this fight and must do everything that we can to save our son’s life.

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