Monday, December 21, 2009
Saturday, December 19, 2009
When I took Amaey for his CBC on Thursday we found out that he was neutropenic. So we started taking all the precautions. I did let him go to his science and piano class just because they had 3 to 4 kids max in the class. Also, these are 2 things Amaey literally looks forward to. It's almost like taking food away from him if he cannot attend them.
Now I wish I hadn't taken him anywhere because I had to bring him into ER this afternoon because he had a fever.
They moved us from ER back to 1 North and in our old room. Amaey is back on broad spectrum antibiotics. The good thing is that his WBC is up from 100 to 500. If his cultures are negative and if his fever doesn't spike high we will go home before christmas otherwise we will be celebrating the holidays in here. Oh Joy!
Wednesday, December 16, 2009
Sunday, December 13, 2009
Amaey was homesick in the afternoon (2.5 out of 5 days are down). He was glump and did not feel like doing anything. He had to finish up his homework, maybe that made him feel more bored.
So I took his homework away and brought a sand art project for him to do. He was not cooperating at first. He found it boring and it did not really look that cool. When I peeled the first layer of paper off and asked Amaey to pour all the sand and spread it and mess it up he sat upright. Now we were talking.
The first layer was dark blue and it was half of the design so it really looked very impressive. He was so happy to see the design transform in front of his eyes that he wanted more. Little by little we peeled each an every layers off and when he filled in the white clouds last he was beaming (he picked his own colors).
He wanted to go out and show it to the nurses. So we took his pole and I dressed up in my gown and shoe coverings (we are in the stem cell unit so anytime an adult steps out of the room they need to wear the protective garb) and walked to the nurse station. H was so happy showing his design off and then he started floor skating in his socks. He danced up and down the long corridor but the tubing wouldn't let him go to far. So finally he got tired and we went back in the room.
They have free on demand movies for families and we picked Fly me to the moon. We had dinner and watched the movie. (we always do dinner and movie on Saturdays at home so we had to follow the tradition. Around 10:30 the nurse came to unhook him from the ivy just for couple of hours. Oh Boy! you should have seen Amaey, I'm FREE!!! He jumped out of his bed and ran outside the room. Now there was no stopping the dance monster. All the other nurses had heard about his performance earlier so they all gathered up and Amaey gave quite a performance. Then we walked outside the stem cell area and danced all the corridors and finally settled near the family lounge and played with a contraption. I do not know what it is called but it was cool. We played for a long time and finally went back to our room since Amaey was tired.
He was so happy when he was falling asleep. The party animal is still sleeping.
Saturday, December 12, 2009
On Friday night we did our usual parental/child swap.
Apurva brought Arjun over and since Amaey was not in isolation anymore he got to go out to the entrance and see his brother. They were so cute.
Amaey has been asking for Arjun for many days now, however now that Arjun was there all he wanted was to get away from his hugs.
I know when I drove home with Arjun he was truly happy to have seen Amaey. On Saturday morning when I went to do the swap again Arjun was in the car with me and he said, ma when Amaey goes to the hospital I like it for a few days because I get to be by myself but when he has to stay for so many days I start missing him. I loved that honesty. I truly envied his honesty.
Friday, December 11, 2009
Yup the verdict is 5 more days or a rise in his levels.
We are bummed, feeling claustrophobic at the moment in this room. I get to go home and take a break and come back again, Amaey doesn't. I can totally understand how he feels. All he keeps saying is he wants Arjun.
This morning he was picking a fight with me and I said Amaey I think the two of us need a break from each other and he said yes I need Arjun to fight with. I thought that was so cute. He loves his brother but if someone asks him about his brother all he says is, he is always mean to me and fights with me... while Amaey instigates most of that.
Now all we can hope is that his WBC goes up and we can go home.
Yesterday Amaey's CBC came back and he was neutropenic so they started his antibiotics right away. Now I have no idea what the plan is and how long we will be in the hospital.
The good news is, he had no fever since 7:30pm yesterday.
I know Amaey wanted to celebrate Hanukah with his Gabbu. Not sure if we will be home for that. It will be great if we can go home tonight. It is nice to be home with the family on the weekend. It helps to unwind and then get ready for the week.
Thursday, December 10, 2009
Today has been a really busy day for us.
As per protocol he was supposed to be discharged after getting his last chemo at noon so after watching him for couple of hours we would have gone home.
But they really want to watch him overnight. Give him his last pre-meds cocktail at 6pm, see how his body would react once he has no medicines inside him and if a fever does not spike, get a chest x-ray, start his blood transfusion and then discharge us.
Once Amaey heard the doctor say that he will have to stay tonight he completely broke down. He cried so much that I suddenly realized that we have had it really easy up until now. If it weren't for his attitude, his smile, his will to keep going we would have gone insane by now. If Amaey had taken his treatment the way he has over the past three days we would have been completely unbearable people to be around. If we are calm and composed it is all because of Amaey. If we can breath and not be at each others throats it is because of Amaey.
This hospital stay has driven him off the wall. It was too soon. He was in the hospital just last week and now he was supposed to be here for 3 days but it might be longer. He just spiked a fever again and we were hoping he wouldn't. If his ANC is 500 or below then he is officially neutropenic which means they will start him on antibiotics which means we are here for 3 more days ugghhh.
I don't know how I will handle him. Usually I can but this time around with the steroids and benadryl creating havoc in his brain I can't reason with him, I can't entertain him, I can't even entice him to watch Bobby Flay on Food Network. I wish they allowed kids to visit him. Seeing Arjun would really help him at this point.
One thing at a time. I'm going to pray hard that he does not spike another fever tonight and he is not neutropenic... then we will get to go home. IF not at least the meds will have worn out of his system and he will smile and see the brighter side of life.
Amaey's turtle collection is growing steadily.
He bought this green tortoise in Las Vegas and named it Tortellini how cool a name is that for a green tortoise.
One of the play room people had stopped by the room and saw his Tortellini and rewarded Amaey for the ingenious name with yet another tortoise... He named it Ferrari yesterday because he was watching F1 racing with Apurva but today he renamed it Spotty.
Apurva is not too happy about that. I have a feeling the two will go head-to-head about this re-naming once Amaey goes home.
Amaey managed to pull it through last night. He had fever and tylenol helped but the fever came right back and kept increasing. However he managed to get the chemo done Yeah!
He is still slow and his ANC is 560 and Hemoglobin is going down so they definitely want to keep him tonight and watch him. Both Apurva and I are more comfortable with that plan.
At noon he will get his Peg, which are two simultaneous shots on the thigh, and after 2pm he will get a transfusion.
After that it is wait and watch.
Amaey really wants to go home so we are not telling him that he has to stay one more night.
Tuesday, December 08, 2009
On Friday we went in for blood test. Amaey's platelets were low but were on the rise from earlier in the week so they asked us to come in on Monday for another set of CBC and chemistry and possible pre-medication for admission on Tuesday. So on Monday we went to the clinic for Amaey's bloodwork. Everything looked good. His ANC was up at 1400. Based on that they decided to move forward with his chemo on Tuesday. This time around the plan is to pre-medicate him with a cocktail of drugs. We started the pre-medication on Monday at noon.
On Tuesday they called us at 11 to inform us that they have a bed and we should check-in (sounds like a hotel huh). We got there around 12:45pm. Amaey wanted me to make his lunch and dinner so it took me a little while to get packed and ready to go.
Once we got to the hospital and checked us in they told us that they will not start his chemo until 6pm i.e. after 1 more dose of pre-medication. So Amaey and I went to the playroom and had some fun until 4pm. We came down to the room and around 4:30 Mrs G came over. Amaey was really happy to see her. He was a little looney at this point because of all the benadryl he had taken.
He wanted me to pick-up dinner from CPK so I left the tutor and pupil and went to the Stanford mall to pick-up his mac and cheese.
After his tutoring we had dinner and watched several episodes of chopped and you think you can dance and called it a night.
Around 8am on Wednesday he spiked a fever of 102. This time around they were more prepared. The nurse took his blood culture right away and gave him tylenol. When I left the hospital at 11am his fever was subsiding and he was happily playing on Apurva's computer.
Throughout the day I have been checking in and his fever seems to subside with tylenol and comes right back in 4 hours. So far it is all under control. Our hope is that it stays this way. From his last blood test this morning it was determined that his ANC is low but not neutropenic and his hemoglobin is coming down so I have a feeling that they will transfuse him tonight or first thing tomorrow morning.
I sincerely hope the night goes well and without any major changes.