Reinoldas

In search of the diagnosis

 

In my opinion, as well as in the opinion of the doctors, our baby Reinoldas has already been born with the brain tumor and this could have been confirmed by the abnormal blood test results, however no one paid attention to this or emphasized it at the time.

 

Our son Reinoldas was born on September 04, 2005. He was a very strong boy and weighed 4 kg and his height was 53 cm. According to the APGAR scale he was rated 9, because the baby was born 1 week earlier than the term forecasted by the doctors.

 

We came back home after 3 days however not even 2 weeks passed and we had to return to the hospital, because his mother (namely me) drank some orange juice and the baby broke out in a rash

 

While we stayed at the hospital the rash healed in no time, however Reinoldas’ blood became the greatest concern. His blood, according to the doctor, was very thick. She (the doctor) concluded that the child was starving. Only now I understand that at the time the blood was already indicating the problem, which later on, approximately after 2.5 months, showed itself by the first external symptoms. Reinoldas had nystagmus (involuntary movements of his eyes). Two more weeks passed. We were getting ready to leave for our journey to the mountains and therefore went to see our pediatrician in order to get vaccination. Then I asked the doctor about our child’s eyes. She became very concerned and told us to promptly go for a consultation with the neurologist. The very same evening we persisted to be examined by the neurologist at the consultation clinic. After examining Reinoldas and performing the ultrasound of his little head, she prescribed Diacarb to be taken for 10 days and told us to observe the condition of our child.

 

Reinoldas’ condition didn’t improve and it was suggested that he was to be hospitalized at Klaipėda Children Hospital. We refused and asked for the referral to the Clinic of Eye Diseases of Kaunas University of Medicine. During the visit and examination there the oculist found no changes in eye fundus. The very same day we were sent to see neuro-oculists. Neuro-oculists immediately directed us for the consultation of neurosurgeons. The only thing the doctors agreed upon was that magnetic resonance imaging (MRI) test of the head must be performed to Reinoldas. However this test could only be performed at Santariškių Clinics of Vilnius University Hospital, because anesthesia was required. Only this hospital in Vilnius had remote monitoring equipment to be used during the magnetic resonance imaging test.

 

We returned to Klaipėda in order to obtain the referral to Vilnius University Children Hospital. We arrived at the Pediatric Center of Vilnius University Children Hospital in Santariškės on February 13, 2006. All tests were performed one more time. I think that at that time we were very lucky because a very good neurologist consulted us. She not only good as a specialist, but also as a person. While performing the ultrasound test she was the first to detect the tumor. This doctor provided me with extraordinary psychological support.

 

On February 14, 2006 the computed tomography scanning (CAT scan) was performed. Once again there were a lot of speculations about what kind of the tumor it was. We were immediately referred to the neurosurgeons of Kaunas University of Medicine for consultation. And again we were lucky to be consulted by the wonderful doctor, devoted to his work. He explained to us that it was craniopharyngioma, which must be resected. However before that we returned to Vilnius, because MRI scan was required.  

 

Confrontation with the diagnosis

 

On February 13, 2006 MRI scan was performed. The tumor with the dimensions of 3.3 cm x 3.0 cm x 2.5 cm was detected. The date for the surgery was set for March 23, 2006. The morning of March 23 came. With heavy hearts but great hope we accompanied our little one to the door of the surgery theatre. Thus 4 long hours of waiting began. We hoped that the surgery on our baby would be performed and that would be the send to our suffering. Unfortunately, this wasn’t to happen. The news brought by the neurosurgeon left us devastated. The total resection of the tumor in little Reinoldas’ head could only be possible if his vision was to be sacrificed. The biopsy was performed. Diagnosis: Astrocytoma Iº. Chiasmatis nervi optici. Subatrophia nervi optici.

 

Desperate fight

 

After the surgery we had to decide whether to be treated by chemotherapy or not. It took us 1.5 months to make this step. We once again came to Kaunas on May 24, 2006. We started the long and difficult road with the hope to get well. The duration of the initial and main treatment block was 10 weeks. Once a week Reinoldas was administered 70 mg carboplatin, 0,6 mg vincristine. The doses were subsequently increased because the child was growing.

 

On September 04, 2006 MRI scan was performed. The dimensions of the tumor were 4.7 cm x 6.6 cm x 4.4 cm. We were not cheered by the results of the test – the tumor was growing, furthermore, the test revealed the new cystic component, which accumulated liquid inside. We hoped that the liquid will resolve itself and this could be considered as the disintegration of the tumor. Unfortunately, since Reinoldas became very restless, the presumption was made that the growth of the tumor caused of the headache. Our son could not tell this himself because he was only one year old and was not speaking yet. It was proposed to perform the second surgery.

 

The purpose of the surgery was to drain the liquid from the cyst, remove the cyst and perform the biopsy once again. The surgery was set for October 12, 2006.

 

We hoped that after the surgery was performed we would hear the goods news that the formation of the cyst was caused by the disintegration of the tumor. No such luck... The treatment with adjuvant chemotherapy was started after the surgery. There was the total of 12 blocks awaiting us. On December 27, 2006 we went for the consultation with doctor J. Grill at Gustave Roussy Institute situated in Paris. I shall always remain very grateful to little Goda’s parents for their offer to go together, for their care and interpreting during the whole journey.

 

The consultation brought no consolation. These tumors tend to grow and are very resistant to chemotherapy. The radiotherapy would suit best, however little Reinoldas was far too small for that kind of treatment.

 

The doctor, after consulting his other colleagues, suggested the radical resection of the tumor thus sacrificing the vision of our son. He told us that Reinoldas’ vision was bad anyway, and possibly he could be completely blind, however we thought differently.

 

On March 19, 2007 MRI scan was performed. The dimensions of the tumor were 4.8 cm x 6.8 cm x 4.56 cm. The growth of the tumor was minimal, however the cyst recurred. Little Reinoldas was feeling well. The adjuvant chemotherapy was resumed. There was some hope that the tumor will start diminishing in size or at least will stop growing.

 

On November 08, 2007 MRI scan was performed. The dimensions of the tumor were 5.6 cm x 7.5 cm x 5.1 cm. These numbers ruined all the faith that we would be able to defeat the tumor.

 

 

 

 

 

Starting all over again

 

I think we were lucky all the time to meet good experts in their field, which were devoted to their work and well-disposed. And this fact was confirmed one more time – we are treated, supervised and protected by a wonderful onco-haematologist. Not without her help we rolled our sleeves up and got busy fighting the unknown. Thanks to the Childhood Cancer Fund Rugutė Reinoldas had Port-a-Cath catheter implanted and wouldn’t have to endure those terrible needle stabs. And the nursing staff of Kaunas University of Medicine Hospital (KUMH) Children Onco-Haemotology Department will learn how to use Port-a-Cath catheters. We thank you, Edita, for this. We admire your big heart.

 

Now we started 10 block chemotherapy treatment, during which little Reinoldas will be administered cisplatin, vincristine and cyclophosphamide.

 

For more information about Reinoldas see - Forum.