I cannot believe we are in September already and my school is going to open soon. I went for the blood work today to the Lab corp and it was very quick. Doctor wants to see if my blood counts are dangerously low or are they okay. In the evening, my mom got the call from the nurse. She said all my blood work looks good and my hemoglobin is up again. I can’t believe I know all these big medical words now. I think I am going to be Doctor one day and can use all these words that I learnt. That will be so cool!

I want to thank everyone who is supporting me in many ways throughout my journey. I have received so many inspiring messages from lot of nice people, some of which I do not even know, that I feel so special. This is helping me fight all the boring moments and the disappointment of not being able to go out and play or to go to hockey.

I have been busy with the Percy Jackson book series that my aunt have been sending me one after another… Thank you!

Also I got another huge Lego set with more than 2000 pieces to see how long it takes me to finish this. Thanks to my aunt who surprised me with it! Man! Box is heavy..my arms got really tired just holding it to take the picture.

I even got a hockey puck from Canada from my friend. That was so nice of him.

I forgot to mention last time that I received a nice email from my 4^th Grade teacher. I was so amazed to see that she would do that for me. Thank you everyone from my heart!

I am still going crazy with my food demands from my parents. I think I am gaining weight on my face too much and my mom is enjoying pulling my cheeks which I literally never had before. I have the next chemotherapy treatment tomorrow so I will miss the first day of the school. Sad ! I hope the doctor will allow me to go to school on Friday!

Last few days including today have been spent dealing with the side effects of the medications. Either it is my jaw pain or sore throat or it is the belly ache or back ache that grabs the attention of my parents promptly. My mom has set the routine for me to walk every couple of hours, do some exercises throughout the day so that I do not become stiff. My dad makes sure that I do them and my little brother does it with me all the time. I have become an expert in taking my temperature with the digital thermometer now.

It does get boring sometimes now staying home all the time. I just hope I will be able to attend the school more.  I have had many cravings for the different foods since morning time but my parents make sure I eat the healthy food as well along with all day long junk foods. What made me sad was that I wanted to go to IHOP or to the sushi place but my mom said that first of all I cannot go to the public places because of infection and secondly sushi is not safe for me. It is frustrating that I cannot play with my little cousins or go out to eat but I have to listen to my parents because they know the best.

Some body sent me a mystery snack box – thank you !

I guess some body heard about my cravings and sent me a mystery snack box which my mom found at the garage door. It does not have the name of the sender but whoever has sent it, I want to thank them. I enjoyed lot of things from it but my dad was watching me to make sure that I do not eat all snacks/candy at once. I have started to get round face right now and gained 1 pound each day for last 2 days. My mom told me it is because of the prednisone medicine. I am curious to see how I will look after gaining all this weight.

Life is simple. Sleep, Eat, Watch and Study…

1st Clinic visit

Today, August 30^th I was scheduled for my clinic visit for my next round of chemo and the lumbar puncture.

We all left the house at 7 AM to reach the CHOP clinic by 9 AM as it gets very busy in the morning. I reached there and they again inserted the needle in my PORT for bloodwork and to give the chemo later. I was not allowed to eat anything after 11 PM last night and I was really getting sooo hungry while waiting for my turn for GA (general anesthesia). I waited and waited and finally I was able to get in at 11 AM so 12 hours without the food and drink.

I was constantly thinking of the food the whole time and finally settled on spicy Dumplings with peanut sauce.  My parents were having a good laugh as they never hear me craving for food. The whole procedure took 20 minutes and I woke up after 30 minutes in the recovery room, asking for food. My dad was standing right there with my Dumplings. He walked 2 miles each way, in this hot weather, just to get me those dumpling. Thanks Dad….you are the best!  I gobbled them within few minutes and my mom was looking at me with an astonishing look.  MMmm.. they were delicious!

Then I had to wait for my IV chemo medicine. Doctor said that my electrolytes look good. I heard her say that my platelets were low and also my hemoglobin. I got the platelet transfusion and will wait for the blood until next time. My mom was pleased to hear that the liver enzymes were way down now. I have no idea what that means but I guess it is something good to be happy about.

Finally we had to drive one and half hour just to get home. It was a tiring day but at least we get to come back home. I felt great after I came back. I guess I am doing well with my medications. My mom always worries every time I feel a little warm, there she is with the thermometer checking my temperature. She looks so relieved that it is normal temperature.  I had fun with my little brother while playing with the lego car and then making videos of them which are you tube ready.

In the evening, I helped my mom put together the school supplies to get ready for the first day of school. I can’t wait to go to school next week, meet my old friends and make some new ones!

 

New school orientation

Finally the day had arrived where I was scheduled to go for new school orientation with my parents. I had been waiting for this day forever and was so excited. We went to the school and there he was, my new principal and vice principal waiting for me as my mom had already spoken to them regarding me. They took us straight to the school nurse to discuss my year in this school. My nurse was initially hesitant to talk in front of me but when my mom said that I am very well aware of what is going on with me, the nurse felt comfortable discussing the details.

Everyone was so nice and accommodating in the school and my nurse told me that I am a very special child and she will take good care of me. I could see the relief in my mom’s eyes. They talked about getting me a turtle pass so that I do not bump into kids in the hallway, assigning me a buddy who would help me throughout the year as needed like carrying my things if I am not able to do so. Kinda scary to think about that. I think I will be fine but it’s nice to have a buddy. My nurse also told me that I was the only child in the school at this time with this problem but she has taken care of 5 students in the past and they all are doing well. PHeew!! That was a relief to hear that she knows what she is doing!

It was fun to take a tour, practice opening the locker which took me sometime to figure out. I did go to the store to buy some supplies but it got very tiring after 3 hours of moving around so I asked my dad to take me home so that I can rest. Man! It is going to be little rough sitting on those tiny chairs for full day of school. But I think I can handle it because I LOVE SCHOOL!

Later that day I asked my mom to get me a very short haircut so that if and when I lose my hair, it will grow back nice and thick. And then I did get an awesome haircut! It was quite a busy day which I could feel at night time when all the muscles above the pelvis started to hurt. I took my Tylenol and went to sleep and forgot about my blog. This is why I am a day late.

So you guys must be wondering how I am doing at home for last two days. Well I will start by saying that it is so awesome to be home and sleep in a comfortable bed with my daddy.

I have been feeling little better actually with some pains here and there after the chemo medications but I have not been taking any pain medication as my mom says that I should learn to tolerate some discomfort. Mornings are tough as I start off with sore throat which gets better as the day goes. I start by taking the bitter pink suspension and then 3 pills which are really really bad in taste. I have to take them twice daily and I have not given my parents a hard time yet.

I am proud to say that I actually completed the 1000 piece Lego Car in 2 days

I have been busy with completing the lego set to fulfil my challenge. I am proud to say that I actually completed the 1000 piece Lego Car in 2 days with lot of hard work, frustration and screaming few times. It was really tiring but kept me busy and helped me distract from my pains. My parents are treating me very normal with making me do the simple chores around the house and letting me follow the routine which I like. I am so happy that I am getting to play with my brother all day long. I can’t wait to go for the school orientation on Wednesday !

 

Today was the duplicate day of yesterday with the blood work monitoring and medications. I even got a unit of blood today which made me more energetic right away. My nurse and my parents started to make fun of me as I was acting very silly. My doctor came and said that I am doing very well with my treatment and she is confident that I can go home on Sunday.

I had lot of family visitors today from far and very faraway place which was a big surprise in the evening which made me feel sooo special.

My nurse told me that she thought I would be a good participant for the Parkway Run and Walk T shirt design competition. My friends who came to visit me and hang out with me helped me design one on the computer and it came out awesome. Thank you guys for coming and spending time with me and keeping my spirits high. It was very exciting.

My IV fluids are being taken off in the night and for the first time in many days, I will sleep without being attached to the device. Nothing more exciting to share other than I am going to sleep freely now ! Talk to you guys tomorrow!

This morning August 24th, there was nothing exciting except more blood work, more discussion about my health with the doctor who is always laughing and joking around. My mom and dad seemed to be overwhelmed with all the information they were getting from the nurses, pharmacy, nutritionist and the list goes on.

Talking of the nutritionist, I overheard her telling my mom about high calorie intake and then she said something that scared me. She was talking about the tube feeding through the nose if I am not able to gain weight due to low appetite after the treatments. I discussed briefly with my mom and agreed to try few new high calorie drinks in coming days. I am not into food so much so it will be the toughest thing for me to do.

I had some fun at the art class where I am the only one all the time so it is kind of boring but still something to do.

My evening was not so fun one due to pain in the back. I tried sitting on couch, another chair, taking a long walk to the atrium of the hospital with my parents as the nurse suggested which helped little bit. Later around night time, I again got the pain in the back and this time it was really sharp that I started to cry and scream few times. I got the pain medication, hot packs, tossing and turning in the bed but nothing would work. My mom got worried and dad sat next to me. Nurse got the stronger medication through IV which seemed to help finally after 1 hour of suffering. Doctor told me that it may happen after the surgery and it may happen again. Finally I can go to sleep now and hope this will not come back again.

 

Morning of August 23^rd, I woke up and was surprised by the number of comments I received on my blog in one night. I did not know I was that famous and so many people are praying for me. I am really thankful to all of you for all the love and wishes for my recovery. My journey is going to be so easy with all of you by my side.

I started on my chemotherapy.

So it was a nothing to do day today. I started on my chemotherapy. Nurse gave it to me through my port at 2 AM while I was asleep and my mom told me. I woke up little tired but felt much better with my pain. Most interesting thing was that I swallowed 5 small pills at the same time with one cup of water and my nurse was amazed with my ability to do so.

After that I hung out in the room, made some more legos, watched some TV and responded to some of the comments on my blog. I had a physical therapy session today with some exercises, walking by myself, doing the stairs. I did pretty well actually and my therapist was impressed.

The best thing I heard today was that I might be able to go home by Sunday.

I also made some mess in the play room with the shaving cream and colors, played some instruments in music therapy. Got some goodies from the fun cart and met some new people who are trying to help me. Worst part was taking the shower with the port in chest and pain in the back where I had the surgery. But I did it with help from my mom. Did a lot of face time with my brother and my little cousins who I miss so much. The best thing I heard today was that I might be able to go home by Sunday if I do well on the medications. Cannot wait to be home!!

Today it is supposed to be the big day as I would get the results of all the tests and get the confirmed diagnosis. I have learnt a lot of big medical words in few days I have been in the hospital, Thanks to my Mom and Dad.

I woke up not so happy today because of the lot of pain in the body every time I moved. My Mom and Dad took turns waking up all night long and then all morning to turn in bed, get out of the bed and to even go to the bathroom. My Mom told me that God only tests kids who are strong and this is my test because I am a very strong boy who is fearless. I believe her because I know I can handle anything with my Dad by my side. I miss my little brother though so I had to talk to him on face time.

We waited for the results until the late evening. Doctor came and took my parents with her for loooong time. When they came back they seemed to be little relaxed. When I asked they said that I still have the Cancer but it is the one that has good treatment available. They seemed to be very hopeful that I will get better soon which made me feel better too.

The best thing my mom told me was that I will be able to go to school too as I start to recover. Hurray! 5^th grade here I come !!. Another exciting thing was that I can go back to skating and playing Hockey again but in some time. It made me very happy as I love school and I am soooo excited to go to new school this year!