The Illness & Thereafter...
It all started with a mild headache in August 2005, when Sandeep started his 7th semester in college. He was, at that time, extremely busy with the College Placement activities and everyone at home thought the headache was due to sleepless nights. He was tested for the eye power at his Uncle's ( Dr. Radhakrishnan, Alwaye) clinic and diagnosed for Astigmatism on 07th Aug 2005. The fundus of the eye was normal. He started wearing glasses from 10th Aug. The pain did not subside and within a week developed slurred speech and unsteady gait. His friends teased him, he was walking and talking drunk. He was attending classes as he was better during day time. By 20th Aug, he had severe headache and also started vomiting. He preferred to sit in dark as he could not bear the light.
We planned to take him to a Neurologist and he was not available being a weekend. Then we met him, Dr. Gigi Kuruttukulam at Lourde Hospital, Kochi on 22nd Aug. He suggested for a CT scan, which showed a growth in the posterior fossa. The scan showed evidence of 4.4 X 3.1cm hyperdense non enhancing midline posterior fossa mass lesion suggestive of Astrocytma/ Ependyoma and advised for an MRI. He was admitted at Lourde and was on steriods to reduce the brain oedema and thus reduce the pain. His travel, in car negotiating the badly laden roads to Lourde was heartbreaking. Even a small movement of the vehicle aggravated the pain. His head was compressed in a towel in hisBindu aunty's lap. With the steroid shots he was smiling in the ICU at Lourde. A neurosurgery had to be done to remove the lesion. We told Sandeep there was small growth at the back of the head and has to be removed. He only wanted to get rid of the pain as it was too much for him. His only anxiety was if the surgery would be painful but wasrelieved when his Dad, an anaesthesiologist told him there would be no pain at all
We decided to get him admitted at Amrita Institute of Medical Sciences, Kochi but the admission was delayed for a day for a vacant bed. Then MRI was taken and the report impressions were Medulloblastoma, Astrocytoma or rare possibility of Tentorial Meningioma. He was operated on 25th Aug., the surgery took around 7 hours. Was shifted to postop ICU and was weaned off the ventilator after the postop CT scan, which was normal. He was up and talking the next day and he was perfectly alright, with no neurological deficit after the surgery. He was discharged on 30 Aug. Thanks to his neurosurgeon Dr. Dilip Panikar and his team for their expertise and excellent care given to him. The Doctors could do a gross total excision. We also remember the help of Dr.Kurien and his team for the anaesthesia and post operative care. He wa advised not to climb stairs and not to ride bike and car for 6 months.
Then came the pathology report and the diagnosis was Medulloblastoma, which is a malignant brain tumour. They develop in the cerebellum, in a part of the brain called the posterior fossa. Medulloblastomas are more common in children, particularly between the ages of three and eight. They make up about one in five (20%) of all childhood brain tumours. The tumour is more common in males than females. They can also occur in adults, but this is extremely rare.
The MRI report and discharge summary and the pathology report were send to Dr. Bhavani Dutt (Sandeep's Aunt), who is a Radiation Oncologist in Ontario, Canada, for further opinion. She took a second opinion on the pathology report and they also confirmed it as Medulloblastoma, with evidence of increased anaplasia, which has a very poor outcome in paediatric cases. The report said it would be difficult to predict the outcome in adult cases.
The same opinion was reported by thecollegues of Dr. Sreelatha Nair (his aunt), an internal medicine practitioner at Pittsburgh.
The treatment protocol was discussed by the hospital Tumor board and was decided to give Radiation and Chemotherapy. A CT simulation was done on 5th Sep, as the first step for the radiation. This helps the Doctors to plan the radiation treatment.
On 9th Sep, the CSF study was done to check if the cells had spread to the spinalcord. On 12th Sep another MRI scan was done and by God's grace, both results were normal.
Radiation & Chemotherapy-I
The radiation and chemotherapy protocol was planned by the veteran Dr.T.K. Padmanabhan, Radiation Oncologist and Dr.K. Pavithran, Medical oncologist. Sandeep was advised to skip studies and exams for the treatment period. But Sandeep was firm and confident to continue the studies along with treatment.
On 12th Sep 2005 the cranio spinal 3D conformal radiotherapy started. The whole spine received 3600 cGy/20 fractions. Whole brain received 3960 cGy in 22 fractions. The posterior fossa was boosted upto 4860 cGy and the tumor bed was boosted upto 5760 cGy.
He also received weekly shots of Chemotherapy with Vincristine along with the radiation. The radiation and Chemo took 32 days upto 26 Oct 2005.
His weight was 80 kgs before the illness was diagnosed and went down to 70 kgs when the treatment started. Also the Blood counts shot down to 2.5 K/uL from 14.2 K/uL, the HB went down to 10 g/dl from 14 g/dl. He had shaved his head before the radiation started. But started loosing his hair in 2nd week of October.
During this period he was also attending college. Somedays were so horrible with severe vomiting and tiredness. Due to the low Blood counts, he was prone to infections like sore throat, cold etc..
His Principal and teachers Prof. Jyothi John, Prof Mani, Dr.Mini, Ms. Laila and many more at Model Engineering College,Kochi were extremely helpful, by even adjusting the class rooms and exam halls to the ground floor to help him.
He took his 7th semester exams in Nov and took the CAT exam, an entrance exam for the Indian Institute of Management courses, travelling to Kozhikode by car. His friends Sandeep Pillai (known as Pillai in friend's circle and our Sandeep was known as Menon as they were both Sandeep), Rahul Nambiar, Rahul T.P, Elvis, Vikas, Sheryl, Rose, Aravind, Sneha and many others took care of him in college and helped him in his studies. Pillai was always with him setting aside all his own needs.
The theory exams were over on 16 Nov and the Chemotherapy started on 22 Nov. By then his counts had slightly increased with WBC counting 3.6 K/uL and HB 13.3 g/dL. The protocol was 3 drug therapy with six courses of Vincristine + Cisplatin with 4 weeks gap between courses and 4 courses of CCNU (Tab Lomustine) every 8 weeks. Eachcourse of intravenous Vincristine & Cisplatinwas for 2 days and tooknearly 8 hours a day. After the first course he had body ache, headache and high fever.
Amidst all these pain and fever he took the University practical exam on 30th Nov.
The second course was delayed by one week due to the low blood counts. Other doses were given in time. By 5th June 2006 the chemo therapy completed. He had severe neuritis and so had numbness in hands and feet. It was so painful for him to walk without footwear. He had bodyache and even a hand shake was painful. Almost every week the blood test was done. The nurses found it difficult to draw blood as it was difficult to get the veins. Sister Remani was very careful and he always wanted her to draw his blood. Even chemotherapy was difficult because of difficulty in getting bigger veins. Sister Kanakamma was very particular and instructed junior nurses to be very careful and to give the shot with very minimal pain.
In March 2006 he developed a neuritic pain on the face and was adviced to take carbamazepine- 200 mg daily. Then by June 2, 2006, the pain subsided and the medicine was stopped.
In May 2006 he took the final semester exams, again with the help of all friends. During the last semester he had to do a project and his team members were helping him a lot. He was also very much involved in the activities of Placement cell and the Illuminati, the College quiz club. He went to Rajiv Gandhi Institute of Technology ,Kottayam and won the Quiz competition.
As he was adviced to have reviews every six months, MRI was taken on 11 April 2006, to see everything was fine and again things were all fine. His weight had dropped to 65 kgs. He took rest for one month and then went to Bangalore to join Apache on 3rd July 2006. Everything was going perfect except for few attacks of infections. The next MRI was done on 21 Oct 2006 and again things were perfect.
He was adviced by his Doctors not to ride his bike and hence had to travel by autorickshaw to go to office. Due to the pollution the attack of infectious diseases were too frequent and so decided to buy a car. He bought a Maruti Alto LXIin Dec 2006 and was driving his car till he left Bangalore in May 2007. Used to come home every month by overnight bus from Bangalore. Was enjoying his stay along with his friends- Arun, Cherian, Akhil and Vinayakam. Went to Hyderabad with friends by car, went to Chennai for US visa interview (did not get Visa as the officer felt it was too early for him to travel to US) and used to enjoy his weekends with friends at Bangalore. He had his hair grown back but not to the original growth.
In May 2007, a family get together was planned at Kochi. Sandeep came on 11th and returned to Bangalore on 15th May. His uncle was found infected by Chicken pox and hence he was also advised to take Homeo medicine as remedy for the Chicken pox. On 21st may he was not feeling well and complained on slurring in speech, but thought to wait for few days. On 30 MayChickenpox rashes were seen and hence returned to Kochi. His doctorsat Kochi advised him to take Acyclovir to bring the Chicken pox under control. By 10th June he was over the Chickenpox. He had gained weight to around 73 kgs.
The second attack (or) First recurrence
His neurologist Dr. Gigi suggested for an MRI as he had slurred speech. The scan was done on June 11, 2007. The result was shocking and the Tumor had come back, something which we had all feared.
This time it was seen to be of 2.7 X 2.4 X 2.6cm in size around the same area, but edema was minimal and hence no headache. It affected his speech and that was the only symptom. A Spect Scan of the brain was done on June 13, 2007 and the lesion was confirmed and located more clearly. A spine MRI was done on June 14, 2007 and no drop metastases were found as the doctors feared. Spine MRI was normal.
The tumor board of Amrita decided to operate him again and hence he was admitted on 17 June and surgery done on 18 June 2007. The surgeons were Dr. Dilip Panikar Dr. Rajeev. Again after six hours in operation he was excubated from the ventillator on 19th morning. A post op MRI was done on 19th afternoon, everything was normal, no residual tumor found. He was shifted to the room on the 20th and discharged on the 22nd of June. Again everything seemed favourable, he had no neurological deficit. He was perfect and back in high spirits. He had become an experienced person and was comparing everything with the first treatment.
On 13th July, another CT simulation was done as preparation for radiation. As this was a recurrence, the doctors and we were trying for other opinions regarding the treatment protocol. Studies have been donemostly on peadiatric cases, as Medulloblastoma is usually found in children. Adult cases being very rare.
Sandeep's aunt Dr. Bhavani Dutt ( Rani ammayi) took opinion from several doctors in Canada and USA. His aunt Dr. Sreelatha ( Sree kunjamma) took online second opinion from the Cleveland Clinic. Dr. Padmanabhan Sandeep's Radio Oncologist at Amrita, also discussed the case with his several contacts in US. Everyone was of the opinion that Chemotherapy has to be given, but on Radiotherapy there were difference of opinion. Some suggested as he already had a high dose during the earlier treatment, it was risky for another cranio spinal radiation. The Canadian opinion in general was to go for full dose craniospinal reirradiation.The Cleveland clinic opinion was for no radiotherapy.
On 23 July a CSF study was done and the results were negative, there was no sign of any dropmets. The next day an Ultra sonogram of the abdomen was done and everything was found perfect.
A complete bone scan was done on 24 July and found that there were no deposits on bones.
Radiation & Chemotherapy-II
Finally after all discussions, it was decided to start with chemotherapy first. A peripherally induced central line (PICL)was inserted on his right forearm hand on 28 July by Dr.Jerry Paul. This line would help for the chemotherapy, as Doctors feared it would be difficult otherwise to maintain the vein during the further courses of treatment.
The treatment started on 30 July 2007. The medicines administered were Carboplatin- 500 mg, Eptoposide- 160 mg, Ifosfamide 2.8 mg with Mesna. Each course was for 4 days of 7 hours each. There were six courses every 21 days. After the fifth course he developed abdominal pain due to pancreatitis. The serum amylase was 300 units. He was admitted for 4 days with nil per oral . Ultrasonogram of the abdomen was normal. He was on IV fluids only. Doctors suspected the pancreatitis might be due to the Ifosfomide. During the sixth course of Chemotherapy, they tried the medicine again, pain recurred again when Mesna was administered along with the Ifosfamide. So Ifosfomide was not given during the last course. After each course 5-8 doses of Granulocyte Colony Simulating factor (G-CSF- Grafeel) was given for correcting the decrease in white blood cell counts. During some courses when HB went down Erythropoetin ( Erykine 10000 IU) was given. The injections were very painful.
The second chemotherapy went on smoothly except for the pancreatitis. There was no vomiting, not much tiredness, was able to eat well. He was cheerful and was working from home. The sixth course of the Chemo was over on 29 Dec 2007. Brain and spine MRI on 15 Jan 2008 and was normal with out any recurrence or relapse. During the treatment period, he prepared for the GRE to further his career aspirations. He took the test on 7th February 2008 at Trivandrum. As the lift operator was not available in the morning, he had to climb three storeys to take the four hours long test. After the test he was saying that he didn't get the speed to write and hence it was time out before he could do the last question.
However, considering the different opinions, his Radiation oncologist Dr. Padmanabhan suggested to give radiation to the tumor bed to be more safe. It was decided to give IMRT which is a technique used to radiate the specific point and thus the surounding normal brain tissue will not be affected. Sandeep was also ready for the radiation but he had to improve his counts and hence the radiation was to start in Feb 2008. The planning and simulation for IMRT was done on 8th February 2008. The IMRT was planned from 21st February.
Things were under control and we were planning his return to Bangalore. The plan was to take one month rest after the Radio therapy and rejoin office in April 2008. He was calling up his friends to find a new flat as he would be going with his mom.
The 3rd attack (or) second recurrence
During the second week of February, he complained of pain in the right knee. We went to Amrita on 13th Feb, was prescribed analgesics. On 15th the pain was worse and he could not walk as his right leg could not bear weight. Also had slurring of speech and weakness to his right hand. Was admitted at Amrita for further investigations on 16 Feb 2008. He was shifted on wheel chair.
An MRI scan of the brain on 16 Feb showed patchy enhancement along different locations- mid brain, pons hypothalamus, tentorium, right cerebellum and periphery of the operated site in vermis. SPECT scan showed raised choline levels with reduced Naa levels in the mid brain. Cerebral Oncoscintigraphy was done on 18 Feb and the report gave diffuse increased tracer uptake in right cerebellar cortex and moderate tracer retention above the lesion. All the reports suggested the worst one- another recurrence.
Due to the recurrence as patches, it was decided to change the treatment technique to 3D conformal Radiation Therapy instead of IMRT since the target volume area was bigger. It was planned to undergo the radiotherapy of 3600 cGy on 20 days as inpatient. To improve the ataxia, physiotherapy was started on 18 February. Radiation started on 21 February and ended on 18 Feb. During the stay in the hospital, Mr.Binoy and Mr.Mahesh, the physiotherapists helped him to improve his ataxia. During the first week of hopitalisation, Sandeep was very reluctant to meet visitors as the speech was not clear. He was adviced to talk loudly to improve the speech. He used to sing loudly the then popular malayalam movie song taught by his cousin Srinath- “Viswasthanamoru barbaram balane Sathyathil Aarum thiricharinjila........”
To improve the weakness of the hand he was adviced to use the cursive writing book of primary classes. All the problems improved by the time he was discharged. The speech was very clear. Handwriting needed some more improvement. He could walk with just a very minimal support. He put on weight and had a fluffy face, due to the steriod tablets taken during the radiation. He had very good appetite and wanted to eat everything he liked. His uncle and aunt- Jayan maman and Bindu ammayi used to somehow bring items like jack fruit, small mangoes, sharjah shake, chicken roll etc. He was also working with his Laptop with a USB modem.
He celebrated his 24th birthday on 13 March 2008 at the hospital. Dr. Padmanabhan was the first person to wish him. His friends Vikas, Raman, Tintu, Appunni and many others came to hopital with cake for the celebration. He got a gift Watch with a big dial and boquete fromhis friends Amrita and Sandeep Pillai. Distributed sweets to doctors and nurses and other staff in the oncology ward. On 20th March 2008 he was discharged and continued the physiotherapy at home.
He fought, but the illness conquered him...
After one week, he complained of pain on the right leg. Also had muscle cramps in the leg at night. Had an attack of common cold from 26 March 2008. At Amrita hospital, Dr. Mohammed Riyas attended to him and gave medication for pain. He developedsevere constipation and didn't have bowel movements for 4 days. After taking laxative, he had severe diarrhoea on the 31st of March. We thought it was due to the medicines. Had muscle pain and was difficult to walk. Again went to Amrita on the 4th of April and had all blood tests done. The counts were fine except for slightly low platelet count.
His pain on right knee persisted and he could not move his right leg andwasreadmitted at AIMS on April 7th. He had difficulty in passing urine and severe abdominal pain due to that. When the catheter was inserted, he was so relieved. Bone scan done on the 8th of April was normal.
Dr Pavithran advised MRI of the Brain & spine to rule out a root lesion. The scan was planned for the 9th and we were waiting for the call from MRI department. Then by 4.00 pmhe had a seizure attack. Sandeep's Dad, Dr. Boban and the staff at the ward tried hard to help and he was alright, even though he had two attacks. Then the Doctors decided to shift him to ICU for a day to monitor him. He was given Phenytoin infusion to control further seizures.
Then on 10th , the MRI was done and the results were the worst ever!, he had dropmets throughout the spine with relapse in the brain. Though all of us including hewere fighting so hard to beat it, the tumour was on its way to conquer him from all sides. This was the reason for the difficulty in moving his leg and also the reason for the altered/ absent bowel and bladder control. He was shifted to room and was on Dexona, Phenytoin and Freezium. He was taking only light semi solid food.
Till the last MRI result, each and every scan or test results and treatments were discussed with him openly. He used to discuss each and every action with his doctors and also with his Dad and hence had a very thorough understanding on what was going on. He used to ask if we discussed the details with Dr. Bhavani Dutt, Canada (Rani ammai) and Dr. Suresh Dutt of the Regional Cancer Center, Trivandrum (his uncle Mohanmaman) and what their opinion was. Both being Radiation Oncologists were very closely monitoring his health.
And he used to explain everything to his close friend Dr. Sarath and others. But this latest report - we did not have the courage to discuss with him. We did not know how to reveal to him that things were out of control. We did not want others to know about the situation except the close family members.We did not even tell his close friends, as we thought that their immediate visits would give him a chance to suspect if anything went wrong. We just casually told him there may be some lesion on the spinal chord too and we could overcome that by starting Ayurvedic treatments. He was asking Dr. Pavithran on the day of discharge- “What is the next plan of treatment?” He was convinced by Dr. Pavithran's answer that he had to improve his general health and blood counts for further treatment with Temezolomide. Sandeep always believed in his doctors advice and always hoped to be completely cured. He was happy the way Dr. Padmanabhan and Dr.Pavithran discussed the treatment with him. We celebrated Vishu on 14th April in the hospital room by arranging “Vishukkani”. He talked with his neice & nephew- Gowri & Vaibhav, in Australia and to his cousin Anju ( valli) and aunt Chandrika ( Chechiamma). He told valli to send him dry fruits from Australia.
On 16th April, he was discharged with complete paralysis of right leg and partial paralysis of the left leg. He was shifted home in an Ambulance. The next day he had full paralysis of the left leg too. Before the paralysis, he had severe pain, starting with pins needles sensation progressing upwards.The pain was the cry of the dying nerves. He was given Tab Morphine to relieve him from the pain. He used to sit up and had light food and Ayurvedic medicines. We had bought an air bed, back rest and bed side table thinking that he should be able to sit up and spend time watching TV or use Laptop. He used to watch the IPL cricket matches after dinner for about one hour. He had severe body ache and occasional headache. The paralysis was ascending incredibly fast. On 29th April 2008, he wanted to sit up with his legs touching the floor and we helped him to sit, though he had severe pain and did not have any sensation of touching the floor with his foot. He wanted his two grandmas to sit near him and do the evening prayer. He liked to listen to them chanting the Lakshmisahasranama and reading Narayaneeyam. But he didn't want anyone to talk sympathetically or cry in front of him. He never showed any worries because of his disease or never cried of pain or never talked to anyone about his deteriorating health.
On 30th April, while we tried to lift him and arrange the back rest, he fainted, but was alright after a few seconds. When his two grandmas were praying loudly, he told them there was nothing to worry. He had high grade fever and hence we decided to take him to the nearest hospital. . On Thursday, 1st May 2008 by 9.00 am, he was admitted to the Welcare hospital. The shifting to hospital was difficult and we arranged an Ambulance. His dad's cousin Sindhu & Suresh came in time to help us. His maman and ammayi also reached soon after. His brother Dulu's exams were over and so he was around. His aunt Parvathichitta reached by noon. His uncle Omanakuttan kochachan & Mini chitta reached by midnight.
Sandeep was always hoping for the best and he had faith in God and believed he would be made alright. Even after the paralysis started we hoped and wished he could be moved around in wheel chair and he was discussing about buying the wheel chair. We told him it has been booked and we would buy as soon as the pain subsides. Sandeep wanted to meet Mata Amritanandamayi but wanted to do that only when he was ready to move around in wheel chair. Our neighbour Murali & Sudha had plans to arrange a special darshan with Amma if we could shift him in stretcher, but he did not want any special preference to be given to him. Everyone in the family and the friends were all hoping for the miracle to happen.
At Welcare hospital he was attended by Dr.Kesavar V Nampoothiri, Anaesthesiologist andhis dad's college mate. Dr. Kesavar could insert the canula and so there was no need to put nasal tube, which Sandeep did not want. We were giving him some fluids orally.He had headache and a very high fever. His breathing pattern was a little altered but was never in any difficulty . He was fully conscious and memory was intact.
We informed his close friends - Vikas, Johny, Appunni, Anoop and many other friends in Kochi came in the morning itself and before evening Sandeep Pillai and Elvis arrived from Bangalore. He was happy to see them all but was wondering why they were all around. We told him that being a holiday on 1st May and next day being a strike day and then it was weekend and hence they were homeand so they came to visit him. All the friends were with him full time and whenever awake he wanted to talk to them. He was asking Elvis about his new job after completing the Masters at IIM, Indore, was asking Sandeep pillai why he looked tensed.
Thursday day and night and Friday day time went without any additional problems. His pain was almost controlled with Tramadol injection 50 mg 12 th hourly and was half asleep most of the time. On Friday, Jai, his immediate bose at Apache, came and talked to him and told that Prashanth, the Managing Director would be coming to visit him the next day. Other friends from Bangalore, Hyderabad, Chennai came. Many relatives and family friends also visited him. His grandmoms' (ammoommas) came in the evening. They were so worried that they could not even speak to him. They both gave him milk orally. When asked if they could go home, he did not answer. Seemed like he wanted them to sit with him. Then by 7.30 pm, his aunt Chechiamma came with dry fruits from Australia. By then he was tired and was sleepy and could not talk to her effectively.
On Friday night by 9.00 pm he was asleep. We, his father , mother and uncle were with him and we took turns to stretch ourselves. By 2.00 am he woke up and was talking but it was not clear.We did not know if he was trying to tell us something. When his Dad was talking to him, he once said “stop” He said he had pain and hence was given Tramadol 50 mg slow IV at 4.00 am on 3rd May, Saturday. After that he slept till 5.00 am and thenwe found himunconscious and was not responding to pain. By 6.00 am he was gone leaving all the sufferings and miseries behind. No miracle happened!! God wanted our son to be with him more than us. The Almighty had other plans fixed for him leaving all of us to pull on only with the memories of Sandeep...