Weekly Musings : Week 34 What Back to routine means

Weekly Musings : Week 34 What Back to routine means

This week his last hospital chemo of LP was given and now rest of the chemo is through injections given at home. He will need to visit every week for blood tests and later every 2 weeks. So now 2 more weeks to go. Things are now back to routine and the day has to be planned. With the covid situation and the long gap, Manas needs to pick up from where he left which starts with the studies, the increase in exercises and dreaming about his practice in nets. After 8 months where you day is decided by the events that unfold it is time to plan for the days. Time for routine to set in.

Weekly Musings : Week 33 Finally the Results are Out

Weekly Musings : Week 33 Finally the Results are Out

This week there were 2 types of results, the first was the 10^th Board results and most of Manas’s friends have scored very good results. Manas was saying if he had given the exams he also would have scored 90%+ but given his easy going nature he was happy for his friends. This week was also when his PET scan was done to double check his results are all clear and it also turned out quite well. It was a emotional moment to be in the same room where it first started and seeing ‘Baba’ being there to bless us, looks like the schools results these results also turned out well and lay’s a foundation for a great future.  

Weekly Musings : Week 32 Of Tests & Results

Weekly Musings : Week 32 Of Tests & Results

This week was one of the routine weeks with daily medicines, exercises and monitoring standard parameters. This week we had to get our selves tested for Covid as well along with Manas as his PET scan was scheduled the next week. We had gone early morning and there was a lady who had come to collect her results and was tested positive. She was trying to figure out what should be the next steps, while she was doing that there was sense of fear in our minds as we don’t know who is carrying the virus around us.  With caution we gave our tests but then this fear of an unknown enemy always existed. As we near the end of the chemo cycle, the Covid crisis is showing no signs of subsiding and seeing the daily rising cases and queues in hospitals can only pray that there is a quick solution on its way. There are various trials and tests happening and like us the world awaits the results.

Weekly Musings : Week 31 A Roller Coaster of Emotions

Weekly Musings : Week 31 A Roller Coaster of Emotions

This week was a roller coaster week, first his multiple test from Echo to Covid and then CBC and Pro BNP test all meant Manas got very frustrated and couldn’t take it but then when all reports came normal it was a very happy moment. Hospitals is a great leveler where irrespective of who you are, each one is coming with hope and wanting to be cured. The radiant smile on face one getting a positive news just changes the whole approach and we could see in ourselves how encouraging this was. This week has start of the 8^th Month and looks like a month of turn around and positivity. Amen

Daily Diary for month of July

213) Wednesday 1^st July : Start of a new month and a fresh start. Manas has slowly come back to his normal routine, woke up early and got ready as the Physio sessions will re-start. He did some good sessions and later slept at noon. Evening he got back to watch his football game and had dosa for dinner. Forcan medicine is not stopped instead there is the heart medicine. Nice day

214) Thursday 2^nd July: Back to normal routine, did his physio stretches. Today some new exercises were added to strengthen his muscles. Later he did 2000 rounds of cycling as well. He was craving for chat but as he cannot eat raw foods cooked corn and roasted onion and made him one. His fissures seems to have healed completely though we are continuing with the medicines and sitz bath as advised. Another nice day.

215) Friday 3^rd July:   Today sessions are planned for evening but it was raining heavily so skipped. Manas did some cycling. After a long time we played uno. Played chess with him and lost which was after 2 months which means he is getting sharper. One more day passed by.

216) Saturday 4^th July: Another routine day, Manas wanted to eat fish so ordered one and made his fish curry for dinner. Manas did his stretches as usual.

217) Sunday 5^th July : Manas woke early as had his physio sessions. Today he did some more exercises including a small jog inside the house. Today banana flower dish was made which was nice. Watched Chak De India and Penalty movie. Made cheese potato wedges as snacks in evening. Another routine day.

218) Monday 6^th July : Manas routine is now coming back to normal, with physio sessions, on time lunch and dinner and undisturbed sleep. He has now started some strengthening exercise and apetite has also increased.

219) Tuesday 7^th July : After a long time the days are normal , touch wood and we have a predictable day. Made Noodles for him after a long time. Played chess and lost a game.

220) Wednesday 8^th July : Today he was craving for dahi kadi and pakoda which Shalini made for him for lunch. He has now started doing small jogs inside the house. We now have to get a cross trainer, checked with Decathlon and they said to check after 10^th. Night made red sauce pasta for him. Nice day

221) Thursday 9^th July: Today the sessions are in evenings so he woke up late and had a relaxed day. Today was south india menu for lunch and dinner his grandpa made Chole curry. After long time he spoke to his friend and was visibly very happy and excited, was so good to see his old self.

222) Friday 10^th July : Another routine day and little more run within the house. Dr Shobha called and said to get covid tests done before the PET Scan, hence decided to do on Sunday instead of Saturday.

223) Saturday 11^th July: Manas woke up late, made for his dry fish which he was asking for some time, turned out well. He had this week all 6 days of physio. Dr Shobha asked us to go early by 7 am to get the tests done as it gets crowded. Later in evening had light dinner and slept early.

224) Sunday 12^th July: Today is Kitna’s and Mami’s birthday. Morning wished Mami. The Alto car again did not start hence went in Innova. Reached hospital by 7.20 am, not much rush, got all our details enrolled. A lady ahead of us had a positive report and she had to go to MSMC to get admitted. Our tests got over by 9 am and then came home. Shalini made banana flower curry and small onion sambar. Evening made home made sauce and pizza. Manas did for the first time, full 7 days of physio stretches

225) Monday 13^th July : Got Manas covid reports and as expected it was negative. Ours we will get later in day. Dr Shobha asked us to reach early and take the front entrance as the emergency entrance is now for treating covid patients. Today no physio as it was raining at his part of town. Manas ate early and slept early tomorrow is a long day. Manas was cool and asking that his reports would all come clear.

226) Tuesday 14^th July : Morning we left by 6.45 am and reached by 7.15 am. Our covid reports were not ready but they allowed us. Manas was given an injection through a canola and after an hour taken for the scan. This was the same room where his PET scan was done on 5^th December 2019, there is a large photo of Satya Sai Baba and it was a emotional moment for me and Shalini as we waited for his scan. His scan was done around 8.45 am and it turned out fine. Dr Shobha had said it would be fine as the earlier scan had also ruled out any thing else but we wanted to be doubly sure. Later we went up to ground floor to get his blood test done. Poor guy had to be pricked thrice again as his vein was not found. We went to meet Dr Shobha who was very happy to see the report. She decided to do the LP and also the chemo of Mesna and cyclophosphomate. She said few more weeks and he has to bear it, there will be some headache and vomiting and in case of any temperature to bring him. Manas chemo go done and was asked to drink lot of water. He had chicken for lunch after a long time. We came home by 7 pm. We got our covid reports as well and was negative as expected.

227) Wednesday 15^th July : Manas woke up late, was bit tired. He did have nauseauting feeling in evening and at night threw up twice but was later fine. He had slight headache and applied amrutanjan cream and he felt better. Played chess with him after long time. No physio today. Today was the 10^th grade results and most of his friends have scored quite well, if he had given he would have also scored quite well but then there is always next time. Gave him GCSF injection.

228) Thursday 16^th July: He woke up early and had his physio exercises. A Covid case detected in our complex. He played chess with his grandpa and could finally defeat after 2 weeks of loosing. Evening I played a round with him. He slept in afternoon. Gave him GCSF injection. From tomorrow his Cytrabin injection starts. Night again he vomited and then felt better. Dr Shobha had told us that this will happen and he has to drink lot of water. Went to sleep a bit late.

229) Friday 17^th July : Manas woke up a bit late, his physio will come in evening. Gave him the Cytrabin injection. Afternoon he was bit tired and vomited a bit. Evening did his exercises. Had only curd rice as having other food makes him nauseating. He went to sleep in evening, hence slept late.

230) Saturday 18^th July : Another day of physio and cytrabin. Asked him to eat light so that the nauseating feeling wears down. Morning was rawa idly and lunch light pulav with curd. Manas was slightly better than yesterday. Night we all had curd rice and that seemed to help as he did not throw up.

231) Sunday 19^th July : Manas was feeling better and now back to routine. We ordered a cross trainer so that his knee and leg strengthening exercise can be started.

232 ) Monday 20^th July: Manas was back to routine and woke up early, got ready and his physio exercises started. Played a round of chess. Gave him GCSF injection

233) Tuesday 21^st July : It was raining and hence the physio did not come. The cross trainer arrived and was assembled. Manas had light lunch and dinner as next day is lumbar. Gave him GCSF

234) Wednesday 22^nd July: Morning we left around 10 am to hospital. Did his blood test and BP which came a bit on lower side. Went and met Dr Shobha she wanted an echo to be done again as BP showed low, got the echo done and it was at same level as 3 weeks back. She spoke to Dr Shashidhar the cardialogist and he said not to worry and continue with the medicines and drink lot of water. Manas last LP was done. We could get all done as day care and came home by 5 pm. Gave 6 MP and also GCSF. Next 4 days again Cyrabin injection. We met another kid who was 13 years old and spoke to their parents, he was to undergo BMT under Dr Sunil. Now next visit after 1 week on 29^th and also to show to cardialogist. Evening ate curd rice only. He threw up couple of times but later was fine.

235) Thursday 23^rd July: Manas woke up late, was little  better. Had light lunch of bisse belle bath. Evening he started with his cross trainer exercise was bit difficult but he could stand and start. Evening had chappati and his favourise baigan bartha. Morning gave him 1^st of Cytrabine injection and evening at 5 pm gave 6 MP.

236) Friday 24^th July : Manas had a routine day, his Cytrabine 2^nd injection was given. Evening his exercises was given and now cross training is also used. Full sit ups were also introduced which he finds a bit difficult to do as the muscles needs to be built. His nauseating senstation has also gone and he is settling down.

237) Saturday 25^th July: Manas woke at his usual time. Today the plan was to make Schezwan rice and decided to make egg fried schezwan rice. Manas spoke with his friends and many got their admissions and classes have also started. Manas decided that he will start his studies from 1^st of August. Evening decided to make aloo chat. Manas now could get on the cross trainer easily.

238) Sunday 26^th July :  Manas woke up late and Nagamani daughter Dr Swati came and checked his BP. It was normal. Dr Shobha said to continue to give his normal cytrabine dose and his last dose was give for this week. His favorite aloo paratha was made. Gave him an oil massage as his legs were paining. Evening was light dinner. Today 2 tablets of 6 MP was given.

239) Monday 27^th July :  Manas woke up early and got ready. Today he was given the next level exercises where he has to sit and get up. Was difficult but he could do with assistance. From today GCSF injections. Did not give him Emset or Pan as he is now not having any nauseating feeling. He has started preparing for his studies now and preparing a time table starting from Aug 1^st.

240) Tuesday 28^th July: Today the weather was gloomy with overcast skies, he woke up early and did his now new drill of exercises. Gave him GCSF, he felt sleepy and went to sleep, blame it on weather for a change. He wanted to learn baking hence we both made choclate cake from biscuits. Slowly learning new skills as well. Asked Dr Shoba do we get his pro BNP NT blood tests done, she asked to do that next week as Dr Shashiraj is there only on Thursday, so tomorrow is only CBC stat and meet her.

241) Wednesday 29^th July : Morning Manas woke up a bit early and we got ready. Had a heavy breakfast as his BP tends to show low. We did not the usual kit and only took his medicine and latest file. Dr Shobha had asked to get the cross match also done as she felt that usually his hameglobin drops and he may need a transfusion. This time Manas walked all the way which was a good sign of gaining confidence. Dr Shobha was very happy to see him walk and said it is inspiring. We did his blood test and as suspected his hameglobin was low and so was platlets. Dr Shobha asked for 2 blood transfusion and 6 counts of platets to be given. Due to covid there is shortages of blood at blood bank hence I went and gave blood. They wanted 3 more donors had spoken to Shalini, Sunita and Fabian but later as they could arrange did not want that. The transfusion was done and only 3 count of platlets could be arranged, which Dr Shobha said is fine. His 6 MP is now stopped and she asked for GCSF to be given for 4 days and then give Cytrabin and again GCSF so that his counts come to normal. She asked not to give strenuous exercises for few days. Gave GCSF at hospital itself. Manas wanted to eat fish hence ordered one so that tomorrow we plan to make that

242) Thursday 30^th July : Manas was his usual self, even earlier physically we couldn’t make out that his counts are low or not. The Physio came and gave milder exercises. Manas started reading and is getting ready to restart his studies. He spoke to his friends for a long time and did video call and was very happy. It was nice to see him the old way. The poor child had endured a lot and so many pricks, 2 more rounds of Cytrabin to go.Gave him GCSF injection. Evening made fish curry for him and he enjoyed it, given the foodie that he is.

243) Friday 31^st July: Another routine day, did his exercises and gave him GCSF. Today is Varmahalakshmi festival, this is usually celebrated with lot of devotion and fanfare and we invite many for the Haldi Kumkum. Manni also would celebrate this with lot of excitement. This year all festival seems to be celebrated in hearts only. Morning nice spread was prepared and evening after a long time Poori was made. The last day of the 8^th month is over today.