What a crazy week this was ! On Monday, March 11th, when I went for my blood counts, I knew they were going to be low and there it was only 210 ANC but my hemoglobin was still good 12.1. Thank God, I was not supposed to get any chemo this week. I told the nurse about my pain and she said that it may even get worse for few days before getting better but she was okay with one dose of Mortrin because my platelet counts were fine. I came home very tired and restless. Later in the afternoon, the pain in my back and the hips suddenly got so bad that I could not walk, sit or stand. I was screaming and crying, making everyone worried. My grandpa tried to help me by massaging but nothing was making it better. At last, my mom took my temperature first and then gave me the Mortrin which slowly started to work. By the end of the day, I was a different person and this continued for the days to come. I did not know that one dose of Motrin has such an amazing effect.
So the other interesting thing that happened this week was related to my hair. I was sitting at my desk attending the school and I just felt an itch in the back of my head so I scratched. You would not believe what happened after that. I got a big bunch of my hair in my hand. I could not believe it and touched the back of my head again…there it was a big bunch of hair again. So I knew it is really happening what the doctor had said that I am going to lose all my hair this month. In the evening I showed my mom the garbage bin in my room with the hair. My mom was shocked and started to get emotional. I said to my mom, “it’s okay mummy. The stuff happens and at least I will get good hair after all this is over.” My mom said that she was amazed to see that nothing bothers me and how strong I am. From that day onwards, I have been losing my hair crazily and they are everywhere, in my bed, on the blankets, in my hat, on the back of my shirts. So crazy! My dad and I have been joking around that I am going to go bald before him so I am going to look older than him soon…he should be listening to me now…LOL!!!
Even though I was not enjoying my look now but I was certainly having good time with the food. Since I did not have the chemo this week, I was able to eat very well and enjoyed every bite. I got to go out to eat once with my family and spend time in my backyard with the nice weather in the late afternoon when direct sunlight was not there as I need to stay away from that. This is what I really miss….going
After having such a good week, I was all ready for this week because I knew that I was going to get the steroids again. On Monday, March 4th, my blood counts went down and my ANC was 1130, Hemoglobin 11.8 which was not that bad. I actually handled everything on my own that day as daddy got an important call so he was sitting outside. I knew all my meds that I took in the morning and reported them to the nurse; got my port accessed and later my nurse took me for the chemo.
I would say that it was a rough week for me. The best part of the week was that I started with my home instructions for Spanish. My home instructor was super nice! Thanks to her, I think I did well in my Spanish Quiz. Can’t wait to get the results. After first few days, I started with my back and belly pain. It was so hard to eat anything even though I had the urge to eat because my belly was so bloated that it felt like it was going to burst open. I know I made my dad go crazy as I would I ask him bring something from outside and then by the time he came I just could not eat anything. I would just lay down all the time especially in the evening time because my body felt so heavy and sore.
On Sunday March 10th, I was feeling really down with lot of pain in my lower back and the hip region. I was also sad that my grandma was going back to India. She took such good care of me and helped me a lot with feeding me with lot of patience. I will miss her a lot! But at least my other grandparents are here now with me to help me for next few months. Later that day, my pain got so bad in the back and the hips that I could not even sit or lay down. It was the first time, I just could not distract myself and stop my restlessness and complaining about my pain. My mom had to call the hospital to speak with the doctor to find out if I could take pain medication. Thank god I was able to walk and move around otherwise I would have to go the emergency room. The doctor was okay for me to take the pain meds as long I did not have the fever. Oh! What a relief! It felt so much better after taking Tylenol and finally I was able to sleep through the night.
Wow! What a wonderful week I had! It started when I went to the hospital on Monday Feb 25th for the blood counts; I was surprised by my results. My ANC was 4480 and Hemoglobin 12.7 which for the first time came in normal range. Then the nurse told us that other than getting the chemotherapy medication in the hospital, I did not have to take any steroids at home. Also since my counts were good, I did not need to come back to the hospital until next week. I was happy with the idea of being able to stay home and if the weather is good then I could go out.
Slowly I regained my appetite; my taste buds were working again! I actually had pain in my back one day only. I was able to move around more easily but I still lacked energy. I know I upset my little brother because he wants to play with me all the time like we used to but it is hard for me to move around so much and so quickly. I tried to explain it to him but he is too little to understand everything. I do feel bad for him though.
My parents had the meeting with my teachers, counselor and the social worker this week to discuss my progress and if I need the evaluation for the special education. It was so awesome to hear from my parents that my teachers are happy with my performance in academics, with my use of robot and think that I am very responsible kid. Hurray!! I got to say to my parents “I told you that I know what I am doing. I am keeping up with my class and I am doing all the assignments that they are doing.” My parents looked impressed and said to me “You are one tough kid Arjun.”
It was overall a good week!
On Monday, Feb 18th, I started with my 4th phase of chemotherapy. It started off with the blood work and the spinal tap. My ANC was surprisingly down to 710 and I was scared that they will not start since it has to be at 750 but my doctor said, it’s okay to do it and I was so happy! After the spinal tap, I got the 2 medicines Vincristine and Doxorubicin through my port. I did not feel too good that day after I came home. It was very tiring and my body was aching so much. I actually threw up later in the day after which I just felt like sleeping with my dad. I got the good news and the bad news that day. The good news was that I did not have to stay there and will only go back on Friday. But the bad news was that there might be another phase added to my treatment because I was MRD positive after day 29. Even though it is not confirmed but I was disappointed because I was hoping to get it over soon so that I can get my port out. But then when I was talking to my mom, she explained that how important it is that we follow the protocol to get cured. I am okay with it now.
Next few days did not go as I thought they will. I had started taking steroids again and this time it was Dexamethasone. I was excited to see how crazy I am going to get about eating food like the first phase instead I lost interest in food because of the pain in my back and the belly. It was so hard to take so many medications morning and evening when you do not feel like eating anything. I became very quiet and sleepy all the time. I would fall asleep while attending the class. My dad was away for few days and I missed him so much. I was getting irritated with every little thing. When my dad came back on Thursday night, which was the first time I smiled. My mom was sad to see me like this but I started to feel better when daddy came.
On Friday, I went back to the hospital for my chemo. Everyone felt that I was not myself and was very quiet. The doctor said that the belly and back pain are the side effects of the Monday chemo medication. The mood swings are the result of the steroids but they will get better. I do not like Peg Asparaginase because it takes 2 hours to get it through the port and then I have to wait 2 hours more to see if I would get the allergic reaction to it. I could not attend the school on Friday because I was not feeling well when they were giving me the medicine in the morning. The good thing about Friday evening was that I was able to enjoy my brother’s dance in the talent show in my old elementary school. I actually stayed for the whole show because it was so interesting.
Although last few days were not a blast but I did feel better over the weekend. I had some good time with my grandparents who came from India for me and my little cousin. By Sunday, I started to eat better and felt more energy but this pain in my back was still there. I ended my Sunday with the happy mood because my weight had increased to 61pounds even though I was not eating that much.
I am writing after a long time since it has been going good after I came back from the hospital. I have been feeling good with no mouth sores but just decreased appetite. I was feeling tired few days after coming back from the hospital but it got better each day I was home and eating my yummy home cooked Indian food. I had my dad’s uncle and aunt visit me from out of state which was a nice surprise and the best part was that I was able to play with my dad’s uncle for hours in the basement, running around in the house and have lot of fun. It felt so good after a long time of just staying home with no visitors and not being able to go out.
I even got my grading for my second marking period and I was happy to see it as I got As and A+s which was so exciting! My parents said that they were proud of me and I felt confident that I can do it!
On Feb 14th Thursday, I had to go to the hospital for the echocardiogram and for the blood test. It took almost an hour for the tech to do the echocardiogram but my blood test results were good. my Hemoglobin went up to 11.1, no wonder I had so much energy to play around. My skin has started to look more normal too. Since my ANC was at 1170, my doctor said that I will start my 4th phase on Monday Feb 18th. My doctor also told me that I am going to have more thinning of my hair in this phase because it will be 5 chemo medications given within a month so I should be prepared for that. I think I am ready for my last intense phase to start no matter what the side effects are because they are just temporary.
On the weekend, i was able to spend time helping my dad, painting his home office and setting up the furniture which was awesome. I played with my little cousins, running after them, entertaining them. I even got to go to my neighbors /friend’s house and spent time with them. It was good to just get out of the house to do something fun except for going to hospital all the time. I am enjoying my FITBIT as it gives me an idea that every day I am doing more and more. I went up as high as 15000 steps. If I keep up with this and continue to eat well then I will be able to build my strength back in no time!
On Monday morning Feb 4th, I was all packed up to go to the hospital for my last round of Methotrexate and long hospital stay. I was thinking in the car the whole time about how my blood counts are going to be. I did not want to come back and then go again if they are still low. But when I heard in the hospital that my ANC was 1050, I was so happy that I am going to stay and get it over with. My treatment did not start it until late in the afternoon because my urine was not clear enough but finally I was in my hospital room waiting for the medicine to start. I know the whole routine now so it’s easy to deal with it. I knew I was going to throw up at least once in the night because it happened every time.
Next morning, I attended my school through the Vgo robot in the morning the best I could since I was not feeling that well after waking up. I later had a great time with the dietitian and her cooking class. We made very healthy and nutritious breakfast of oatmeal waffles and Egg Frittata. Man it was so much fun and I actually felt like a cook. I loved eating self made waffles with the whipped cream, syrup and the fruits. My dad even got the recipe from her. That was the highlight of the day!
After my Methotrexate finished on Tuesday night, It was time for the blood test results for checking the toxicity level so that I can go home on time on Thursday. Actually my body did well with getting rid of the medicine. My toxicity level numbers were great each time. In 24hrs, it was 39.7 (supposed to be <150), 42 hrs, it was .24(supposed to be <1) and in 48hrs, it was only .27 (supposed to be <0.40). we were surprised that my results at 48hrs were a little higher than the 42 hrs which got my mom worried and so my dad asked the doctor who said that the lab must have made the mistake because it is not possible for the numbers to go up. That was a relief because I really wanted to go home and get over with this phase.
On Thursday Feb 7th, I was able to go home and that marked the END of 3rd phase of Chemotherapy. It also means that I have only one more phase left of intense therapy and then I will be able to go on Maintenance therapy. Then I will be able to go to school, get my port out and play hockey again!
On Saturday, Feb 2nd morning, I woke up so happy with my dad by my side. I am finally 11yr old. Everyone wished me Happy Birthday and I went on to playing on my I pad. Suddenly, I heard my brother and my mom singing Happy B’day with a huge bag of gifts. I was so surprised because I told them that I do not need anything. One by one I took my gifts out and I was so happy to get each one of them..Perfect choice of gifts ! As I was playing on my Roblox, I saw there is lot of money available to buy stuff. I looked at my dad, he smiled and said “Happy Birthday Arjun.” It was awesome. I got gifts from my brother and my grandma too. The best thing I got was Fitbit because now I can track my steps and it will motivate me to keep moving throughout the day. It can also check my blood pressure, my heart rate and calories burnt. I actually gained 3 pounds in last 10 days…sooooooo happpppy!!
I had the chance to enjoy with my little cousins on Sunday. I got Play station 4 for my birthday from my aunt and uncle which was a huge surprise. I actually had 3 cakes for my birthday, one on Saturday and 2 on Sunday. It was so awesome to be feeling good and being able to play with my littlest cousin, running after him all around the house. On Saturday, my friend/neighbor came over with a bag full of cards and a generous gift. When I looked through the bag, I found the hand made / written cards from my all my classmates. I am so Thankful to everyone who spent the time to make the cards for me and making my day so special! It was an overall a great Birthday weekend and hopefully I will be able to celebrate my next birthday on the ice with my team and with my classmates in school!