Amaey was randomized to Clofarabine and Cytarabine and they started his chemo on Tuesday night. He will get these 2 drugs once a day for 5 days and the chemo will last 2hrs each. They started the 1st chemo at 11:30pm and the 2nd at 1:30am. As soon as the chemo started going in I could see that he was restless. He was sleeping and suddenly woke up feeling sweaty. Tried to fall asleep and then started complaining of neck pain which became a shooting back pain added chest pain to that. We asked for tylenol for the pain. I rubbed his back, did some breathing technique and just sat there with him. He suddenly wanted to walk, and then he would sit on the bed and stare. We played with his plasma ball and listened to his musical snow globe and red Ripley's believe it or not at 2:30am.
They finally brought tylenol in and after trying different angles of the bed he finally fell asleep more because he was exhausted.
Next morning however he woke up with a bright smile and ate up the wonderful pecan pancakes with sausages that Apurva and Swati brought from home. Apurva had also bought a new wireless card so that Amaey can play multiplayer games without the hospital's firewall. This made Amaey so happy and connected.
I left to go home and around 2pm they did a procedure on him to place a pic line in his hand and I heard from Apurva that it was a little painful because something was obstructing the tube. They had to have radiology involved and finally they got the line in. They need two access points in his body because his port is used for round the clock hydration while the other line will be used for transfusions and secondary aid. Apurva said the night was relatively easy and they both slept, which is wonderful.
This morning however when I came to the hospital Amaey was very grumpy. The chemo had knocked down all his counts and his hemoglobin was nil and his arm with the pic line was hurting bad on top of that his lego universe game wasn't working.... he was just having a bad bad morning. He cried a lot because he was feeling frustrated and all he wanted to do was go home. He was entangled in lots of wires and probes, nurses kept going in and out, Swati came in from home and after 2 minutes Raj stopped by and Amaey got really mad that everyone was coming in at the same time. He was feeling very overwhelmed. So everyone left the room and stayed outside in the lounge area.
We let the nurse come in after 10 minutes since she had to start his blood transfusion and we made the room dark and comfortable and he finally fell asleep. It took 3 hrs for him to settle down. But when he woke up he had a smile and he asked for food.
It is amazing how much his mood and well being affects us. When he is feeling so low we feel sad that we can't really do anything to help. He is growing up too. When he was little we could distract him with tv, or singing, or some crazy antics but now it is not so easy. It really has to come from him otherwise the change does not take place. Tonight is day 3 of the 5 days of chemo...
They finally brought tylenol in and after trying different angles of the bed he finally fell asleep more because he was exhausted.
Next morning however he woke up with a bright smile and ate up the wonderful pecan pancakes with sausages that Apurva and Swati brought from home. Apurva had also bought a new wireless card so that Amaey can play multiplayer games without the hospital's firewall. This made Amaey so happy and connected.
I left to go home and around 2pm they did a procedure on him to place a pic line in his hand and I heard from Apurva that it was a little painful because something was obstructing the tube. They had to have radiology involved and finally they got the line in. They need two access points in his body because his port is used for round the clock hydration while the other line will be used for transfusions and secondary aid. Apurva said the night was relatively easy and they both slept, which is wonderful.
This morning however when I came to the hospital Amaey was very grumpy. The chemo had knocked down all his counts and his hemoglobin was nil and his arm with the pic line was hurting bad on top of that his lego universe game wasn't working.... he was just having a bad bad morning. He cried a lot because he was feeling frustrated and all he wanted to do was go home. He was entangled in lots of wires and probes, nurses kept going in and out, Swati came in from home and after 2 minutes Raj stopped by and Amaey got really mad that everyone was coming in at the same time. He was feeling very overwhelmed. So everyone left the room and stayed outside in the lounge area.
We let the nurse come in after 10 minutes since she had to start his blood transfusion and we made the room dark and comfortable and he finally fell asleep. It took 3 hrs for him to settle down. But when he woke up he had a smile and he asked for food.
It is amazing how much his mood and well being affects us. When he is feeling so low we feel sad that we can't really do anything to help. He is growing up too. When he was little we could distract him with tv, or singing, or some crazy antics but now it is not so easy. It really has to come from him otherwise the change does not take place. Tonight is day 3 of the 5 days of chemo...
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