Wednesday, February 24, 2010

Need blood

Amaey's numbers look great .011 but his hemoglobin is low so they will transfuse him tonight. Once that is done and everything is OK we will leave in the morning. He was slow and complaining of headaches so it all makes sense.

This is better than taking him tomorrow or Friday for an emergency transfusion. He has outpatient chemo on Monday so we need him to be strong and ready for it.

Doing fine

Amaey is doing fine. He is a little slow today which is natural but his levels are coming down. He is at 2.4 and as usual once we are at .02 or less they will let us go home.

Today Aditi spent the afternoon with him and that was wonderful. He was really sad when she left. He is really close to her and I can understand that it will be a big loss for him now that she is moving to NYC.

However, he is equally excited because he will get to go to NYC and spend time with her. We have told him that when he is OK to fly we will take him there.

Tuesday, February 23, 2010

One of the Kids&Art artists

Sanjay Patel, one of our Kids&Art artists who worked with Amaey and other kids, has come up with his second book. This is quiet an amazing looking book. I absolutely want my hands on it. His website Ghee Happy also talks about his first book.

Monday, February 22, 2010

At El Camino

We had a really wonderful and much needed week off.
Arjun had the Presidents week off from school and Amaey was home feeling himself. It was really restful and peaceful.
Over the weekend we went to Napa to celebrate Pratish's b'day and to toast to Aditi's move to NYC. I did not realize that we took a day off like this after almost 4 months. It was so refreshing.

Sunday was another wonderful day. We went to Draeger's in San Mateo to meet the author of 'The Cancer Fighting Kitchen', Rebecca Katz . I had to meet the person that created such a tremendous book that can make Amaey eat Kale and Swiss chard. Amaey and Arjun helped her cook Quinoa at the event. We got to try lots of gluten free foods and I got to meet some more alternative healers. All in all it was a fun outing for the 3 of us.

Today we drove to El Camino after getting Amaey's labs drawn at LPCH. He was good to go so they have started his second-last Methotrexate. Usually this is an uneventful stay and we hope it stays that way.

Friday, February 12, 2010

We are FREE

We just got the OK to go home.
Amaey's ANC is up and they are happy with the way he looks.

He is craving food from a persian restaurant in Campbell so our plan is to pick-up food from there and take it home for dinner.

Tuesday, February 09, 2010


It's Tuesday, same status quo. He seems to get a fever infrequently so we do not know if something is going to grow in his cultures. But until he has a fever and he is neutropenic we are here. He does have a little energy so he went to the playroom for an hour. I will see how he does after all that excitement.

He took a long nap after coming back from the playroom. We decided that I will stay tonight so that Apurva can work with Arjun on his finals revision. Apurva has taken the day off tomorrow so I will go home and work and pick-up Arjun from school.

Today was one of those days you know will happen but are glad it hasn't. The cleaning lady locked the house real well before she left and Arjun and Vicky could not get in the house after school(Vicky only had the one lock key and not the deadbolt etc etc). I asked them to go to the library so that Arjun could finish his homework. Apurva went home early and picked-up Arjun from the library and went home. Oh Well...

Just checked Amaey's temperature and unfortunately he has spiked one again Arg!! which means 48 more hours over hear.

We are zen.... we will get through this.

Monday, February 08, 2010

Checked into our hotel

Amaey spiked a fever yesterday so Apurva took him to ER around 3:30pm.

His fever came down with tylenol. The CBC came back with low WBC. Neutropenic and fever so they started the ivy antibiotics right away. They did not have a room available until midnight so the two hungry and tired boys had a tough night.

Apparently they transfused him for hemoglobin overnight since it was low. He spiked another fever at 4am and since then he has been sleeping. Apurva is at work, Arjun at school and I'm at the hospital working on my class and waiting for him to wake up.

Thursday, February 04, 2010


In the hospital for platelets transfusion. Amaey's counts are low so the choice was to wait until Monday or transfuse today. We really don't need an ER trip this weekend so we went ahead with the transfusion.

They also did an xray on his right foot. Yesterday Amaey slipped while playing and he woke up in the middle of the night with pain and he was limping today. Since chemo can affect the bones they just wanted to be on the safe side rule out a fracture. Luckily it's not. He just needs to put his feet up rest for a few days.

Rest will be good for him because he is really wiped out at the moment.

Wednesday, February 03, 2010

A scare

We did get to go home from the hospital on Monday evening. Amaey looked ready to go. He was slow but he was fever and pain free for 24hrs so that was good.

Tuesday morning Amaey was slow. He woke up had some milk and went back to sleep and finally at 11am he rolled out of bed. He looked happy and hungry. He was craving pancakes. So the two of us ate a pancakes and eggs lunch and at around 12:30 the two of us started looking for recipes on food network.
Suddenly Amaey complains of a stomach pain and feels like throwing up. We rush to the bathroom and right in front of my eyes, he just sways and loosens up and faints. I tried to hold him but he was so limp that he slipped from my hand and fell on the floor. I picked him up and moved him to the sofa, he was sweating. He gained consciousness and asked for a blanket. He was really low. So I called the hospital and they called us in right away.
I drove like a maniac. Funny thing was, when I put him in the car and started driving, he was fine like nothing really happened. He was reading and alert. It was so freaky.

I put him in a wheelchair and rushed him to the clinic. They were so prompt. They wheeled us in a room and accessed him and took his blood and hooked him to the monitor all within 15 minutes.

Long story short, after an EKG and lots of other doctor tests around 6pm they told us that everything looked good. They said he had something called the vasovagal response. He had a stomach cramp, his blood pressure went down and that caused the dizziness and fainting spell.

We were so glad that was all it was. He is slow and resting today. He is borderline neutropenic, which is expected after his chemo. But he is his witty, comic self.

Monday, February 01, 2010

Wishful thinking

Nope we did not go home on Saturday. We are still in the hospital hopefully we will go home today.

On Saturday after Amaey got his Peg at noon, he was fine. He was in pain because Peg are 2 injections given at the same time on each thigh. Amaey says it hurts a lot. Apurva and I exchanged our shifts and around 6pm Amaey started complaining of eye pain. Severe headache and eye pain. When I touched his forehead to press it I realized he had temperature as well. Amaey's tolerance for pain is pretty high, when you see him crying out of pain you know it is severe. They gave him tylenol and his last dose of Benadryl. I was hoping that would help him. But he was really restless. Finally after an hour of cold water compress and sheer tiredness he fell asleep. The nurse checked his temp and it as still high 39.5. After 4 hours on the mark his temp that had gone down to 38.6 was back up to 39.5. This carried on throughout the evening and night. At midnight his eye pain was severe again and they suggested morphine. I could not consider morphine... it felt too much. I asked for a resident consul and she assured me that morphine dose for kids was not severe. It would help with the pain though.

At 4am he was tossing and turning and exhausted with pain and a sleepless body. I made him sleep with me hoping that would help but finally at 5am I asked for morphine. His pain was unbearable. Finally, the two of us slept soundly until 8:30am when the nurse had to take his vitals. He looked much better I could see that he wasn't clenching as much. However, he needed tylenol again at 9am and then when the doctors came in for their rounds at noon, Amaey had a major meltdown. His intense pain was back. The doctors needed eye drops in his eyes and they were stinging him. He started getting upset with me. I finally had to call the doctor back in the room and have her give Amaey a talk. She was really nice. She stayed until I administered the drops and finally prescribed morphine one more time. She could see that the pain was very high and she really needed him to relax and rest.

The reason I was giving him the eye drops was a decision Apurva and I had made. Apparently Cyterabine can give a form of conjunctivitis thus they put eye-drops for the 2 days of administering the chemo. So either, Amaey wipes his eyes before the drops really go in his eye or the drops do not always go in his eye, whatever the reason, Amaey ended up with the eye pain. So we came up with a plan to administer the drops ourselves just to have more control over the situation.

When I left the hospital at 1pm he was fever free and the morphine had kicked in so I could see that he was more relaxed. Apurva said that the last time they had to give him tylenol was Sunday around 5pm and he was fever free the entire night. He slept well and when I cam in this morning he had a big smile on his face. He is himself today so i dropped him off to school upstairs. If his counts are stable they will definitely let us go home today.