I was so happy when I woke up Sunday, January 6th, morning after coming from the hospital. I had very good night sleep in my cozy bed. But as the day progressed, my throat started to get worse and by Tuesday, it was so bad that I could not even swallow the water. I was taking the medicine with so much difficulty. I was getting irritated with every little thing and everyone asking me what I want to eat. I knew this was going to happen and I had told my mom on Sunday itself that it gets worse on the 3rd day. I tried the warm water gargles which helped a little bit. My mom wanted me to go see the doctor on Wednesday morning because she did not want to see me suffer. But when I woke up Wednesday morning, I was a little better so I did not go to the doctor. I managed to eat some liquid soft foods that day. I even attended my home instructions that day. My teacher said that I am catching up fast with my all my classmates.
On January 10th Thursday morning, I had to go to the clinic to get my counts checked. The doctor said that it is because of Methotrexate , I get the Mucositis, which means I get sores in my throat. I have to take this medicine 2 more times this month. I met the dietician there who said that I have lost around 5-6 lbs since the beginning and I need to eat a lot of fat to gain weight. If I do not eat and keep on losing weight then she will have to put the nasal tube or feed me through the port. I do not want that. It made me very worried and sad. I told my dad and mom that I will try my best to eat. I think eating has been the hardest part of the whole treatment journey for me. To cheer me up, I got the good news that my ANC was 2700 which is in the normal range which means I could go out for sometime if the weather is good. I felt much better on Friday and was so excited for the home instructions for Math and Science. Now I do not have to do much in home instructions because I am catching up in class with the Vgo robot. I got my Math test paper where I scored 100% and my dad was so proud of me! My teacher gave me assignments for next week too as I will be going back to hospital again.
On Saturday, I went out to see some family and friends and my throat was doing much better. I ate well and I was so proud of myself..haha! My goal is to gain 2-3 pounds before i go back to the hospital to show to the dietitian that i am strong and handle this problem too. I had my friend come over for sometime which make me feel so good to hang out with someone. I received the card from school nurse who is always thinking about me. I want to thank her and my school counselor who is always trying to help me with my Vgo robot and any other school concerns. My school has been so good to me and I want to thank everyone for being so accommodating!
After all the fun I had yesterday, it was time for me to pack to go the hospital for my 2nd round of high dose Methotrexate. On January 2nd, I had to wake up so early to get ready to go to the hospital, even though I just wanted to sleep more so badly. I finally got dressed and all my snacks and bags were ready by the time I came down. I knew I was going for at least 4 days to I gave a tight hug to my mom and my brother because I was going to miss them. We reached the hospital and started with my blood work . Thank God I did not have to stay empty stomach so atleast I could eat while I was waiting for my results. After the results came, my ANC was still in normal range but much lower than before, it was only 2180. I was started on the IV fluids right away because that will help me to stay hydrated so that Methotrexate can be excreted fast from my body. I got one of my other chemo medicines, Vincristine and then I had to wait to get the Methotrexate. They were checking my urine to make sure that I was well hydrated before they can give me the medicine. I do not like to wait in the clinic for the bed upstairs. It is hard to attend the school via Vgo robot from the clinic.
I finally got my room upstairs at 12 pm and I could spread out and relax on my bed. I attended my classes the best I could through the robot. At 4:30, Methotrexate was started and my job was to make sure I drink a lot of water. I was feeling okay until the night time when I started to throw up which always happens with this medication. Not a good feeling. I just wanted to sleep but it is so hard to sleep on the hospital bed with so many IVs attached to my chest port. In the middle of the night, I woke up because i had so much pain in my arms and legs and my daddy had to massage them for so long.
Next day started off better with me feeling fresh and ready to start the school. The main problem I have with this medication is sore throat and not wanting to eat. But I tried hard and my dad was also trying to feed me when I was distracted with the Ipad. I met some new resident doctors who try to ask me some trick questions about the location of heart. She said that she was impressed with my knowledge about the human body. She asked me if I want to become a doctor and I said “Definitely because I can share my own experience with them which will make them feel better”.
I was doing very well with my blood toxicity levels at 24hr, 42hr and 48hr. I reached 0.42 toxicity level by 24 hrs which was expected at 48hrs which meant that I was okay to go home on Saturday. But I was not doing well with my throat and the eating. I knew what was going to happen with my throat because I had experienced it last time on Christmas. It is so hard to pass the time in the hospital. I miss my home, my mom, playing with my brother and my bed. I attended the school via robot, finished my home work and the science project. I even got my dad to play Monopoly with me. The best news I got was that I scored 100% on my math test which I had finished before the allowed time. I was up to date with my assignments but I am lacking behind in my classes. I have to cover everything when I go home with the home instructions so that I can catch up with the class.
Finally I came home on Saturday, January 5th evening and stood at the door with screaming “ Home Sweet Home”. I missed my family and my bed so much. I did a long face time with my cousin and my friend/neighbor which was awesome. I just did not want my throat to bother me when I was home because it is really painful. At least I will be staying home with my family for 10 days before getting admitted again for 4 days.
January 1st, 2019, a new beginning. What a better way to start New Year than going to my hockey rink and meeting my friends. So there was a charity event at my old hockey rink and all the proceed would go to the charity of our choice. Of course we chose the proceeds to go to Leukemia research and Valerie Fund to help the kids in need.
When I entered the rink, it felt like I was home. All I wanted to do was go on the ice and run as fast as I could. It was so awesome to see my old friends and spend time with them in the café eating the good old pan pizza. It just felt like old times. I actually carried my stick and wore my gloves … I just had to have them. I met some of the coaches and the other people that I know. It was good to hear their inspiring comments and encouragement that whenever I am ready, I can come back to practice and to play the game. I seriously cannot wait to go back on the ice again!
I want to wish everyone a very Happy New Year with good health and lot of happiness!
My wish for having good days ahead came true so fast. I have been feeling good with no sores in the mouth and good appetite. Medicine worked like magic and I think that is why I had so much energy. Monday, December 31st, morning I woke up at 7:30 and went to wake my dad because I wanted to go out to Denny’s or IHop to eat the chocolate pancakes. I could not wait till everyone got ready and started to rush everyone because I was sooo hungry. Thank God, IHop was not busy that early and we could get the seat fast.
I could not wait to get my big order of food to come after I ordered it and my dad was looking at me like I was crazy. I finished almost all my food and everyone was shocked to see. I was very happy because I was able to eat good, was able to go out and enjoy. I played a lot with my brother in the house and even went to the basement to shoot some pucks. I was less irritable so I was able to finish all my assignments both math and English. I even finished my math test in under an hour. I can’t wait for my teacher to check it and get good scores. I was so relieved and excited to start the New Year with fresh school work.
Friday, December 28th morning, I went to the hospital to get my blood counts checked. I spoke with the doctor about the mouth sores, my runny nose and not being able to eat. Oh no! I lost some weight too. My mom was very concerned about my not eating so the doctor said that he will give me appetite stimulant. This will help me both with my runny nose and improving my desire to eat. I was happy to hear that.
While we were talking, my blood report came back. Nurse looked surprised. When my dad looked at the numbers, he could not believe his eyes. My ANC was 7660 which is normal. I was looking for my name on the report to make sure it was mine. First I thought there was something wrong with my eyes and I saw by mistake 7660 but then as I looked more clearly I could see it was 7660 actually. Nurse said that she checked 2 times already for the name, date and the numbers. I was just SURPRISED.. no other word for it. You know what it means? … it means that I am like a normal kid who can go outside to enjoy some fresh air and don’t have to worry about infection. I think my bone marrow is doing a good job now. I hope it stays like that. I know I still have to go through 2.5 years of treatment but atleast I don’t have to stay home all the time. I hope rest of the treatment my numbers remain normal!
I started my medicine in the evening. At first I thought that it is not going to work but I believe that it is actually working because I ate my dinner really well after many days….Yay!!
Saturday was my finishing my math assignment day. I am trying to catch up with my assignments as I am feeling better now. I do not want to be too behind when my school opens again. I was feeling great because my throat was better and I actually started eating. I even went to the temple in the evening and then went out to eat in a restaurant to celebrate my normal ANC and health. I ordered 2 entrees today and tried eating more than I could to make my parents happy. This felt like old times when I would go out with my family and have fun chatting. On our way back, I explained to my grandma the difference between the steroid medication and the appetite stimulant. My dad was impressed by my understanding of the concepts of different medication. It really is interesting to learn about the assortment of medicines out there to treat almost every problem. I wish tomorrow is better than today!
On Dec 23th, Sunday morning, I was eagerly waiting for the doctor to come and tell me the good news about going home. My mom and I passed the time walking with my IV pole in the hallway, playing some board games in the play room. Finally the doctor came and told me that my toxicity level was very low but I had to stay until 5 pm to finish my IV fluids. I was thrilled that I was going home in the evening. After I came back home, I took a long hot shower and went to sleep into my most comfortable bed in the world. Hospital bed is not very good to sleep.
Next morning, I woke up with sore throat and did not feel like eating anything because everything was hurting my throat. I tried all the soft foods but it did not make it better. I remember the doctor saying that it is the side effect of the medicine. On Dec 25th, I was so excited that my cousins were coming to spend time with me but my mouth sores and the sore throat was bothering me. I wanted to play with them so much but I could not get myself to get and play. I was not eating anything that day and I know my mom was so worried. I took some Tylenol to get rid of my pain in my throat. But it did not help me much. I was so disappointed that I barely have any visitors and now when someone came, I could not even enjoy with them. I want to thank my aunt’s friend who sent me this table hockey game which kept me distracted with my pain.
Next 2 days, I was just having liquid diet. My mom and I were so worried about my weight. My mom kept asking me all the time to try different things and at times I was getting irritated too. But I understand she was also trying. Even though I felt like eating something, I just could not eat it because it felt like something is stuck my throat. It was very frustrating. The only day I was able to eat my Indian Parantha was when my dad put on an Indian movie about the field hockey based on true story. I got so excited and inspired to see how the main character who was paralyzed in his legs worked so hard to walk and play hockey again. His main goal was to play for India at the International level and he achieved it with hard work and positive attitude. I know I will work hard and have a positive attitude like him too.
Thursday December 20th, morning was little rough as I was scared and nervous about my MRD results and blood counts. My dad and I reached the hospital early morning as usual. The nurse took the blood through my port and then we waited and waited. No one knew about the MRD test results yet. I got the first good news after an hour that my ANC went up to 1390. Hurray! That means I will start my treatment today. I was attending my school via the robot when I heard my dad asking from the doctor “What is the result of the MRD test?” I quickly turned to hear what he had to say. The doctor happily said “It came out negative”. It means that my bone marrow is good and there are no more cancer cells. I got really excited and dabbed. I muted myself on the Vgo and started to dance in my seat. I could see my dad super happy and I could hear my mom over the phone cheering up. My dad said “Congratulations Arjun! This is the best news ever”. My mom was right. Everything is going to be good from now on.
They took me for the anesthesia for the spinal tap. Now I know how it goes so I told my dad that he could wait for me outside and I will be fine. Later, in the recovery room, the doctor was explaining about the chemotherapy medication I was going to get this time but I already knew all about it. My mom had told me that this medicine is very toxic so I will get another medicine to decrease the toxicity. I asked the doctor about what does the toxicity do to me. Doctor was very impressed that I knew all about my medicines. He said “You are on top of your things. I think you will become a good doctor because you have good curiosity to learn about things.”
I was finally admitted to the pediatric floor in the late evening after a loooong wait in the recovery room. They had started my medicine in the clinic and it looked like lemonade. My dad and I were laughing saying that I am drinking a lot of lemonade. Everything was fine until the night when I started to throw up. It did not feel good. Anything I tried to eat would make me vomit. One time it went into my nose too and I sneezed and sneezed..maybe 100 times. Next morning was the same. I could not even attend my class. Later in the day, I met some therapy dogs. They were cute, nice and soft. I love animals so it was a cool experience. I started to feel little better in the evening of Friday after they started the IV fluids.
So now they were checking my blood for the toxicity after the medicine. They checked at 24hrs, 42 hrs and 48hrs. I did very well on all of them I was less than 0.4 by 48 hr mark which means I could be allowed to go home on Sunday. I was happy but I do not like them taking the blood out again and again from my port because then they do the saline every time. It does not feel good going through my port. It is the hardest part sometimes. I also have to do these 2 mouth washes many times in the day so that i do not get sores in my mouth because of the medicine. it is tough in the middle of the night to do them.
My mom stayed over on Saturday with me. I told her that daddy did the hard part with my throwing up and now it is the easy part left for her. My mom and I spent time playing board games, walking in the hallway and watching the TV series together. But I still miss my own bed at home and playing with my brother. I cannot wait to go home. I hope my numbers are good enough for the doctor to send me home tomorrow!