Saturday, April 30, 2011

A strange week

Amaey has been a little slow for the past 3 weeks. He has had a cough and cold and he has been a bit tired. None of this stopped him from going to school karate, sleepovers. However, he would need a nap everyday and that was odd. Usually he naps only if he is really wiped out.

They stopped his oral chemo and meds because his platelets were on the low side. We did a chest x-ray to make sure he did not have any lung infection, luckily it was all clear. He had his 5 day challenge and it knocked him down completely. We had not seen him so out of it in a long time. He was miserable, restless, and blah all over. He could not go to school during those days either.

5 day challenge was done with and on Monday we went in for his regular cbc. Usually a nurse calls and gives us his lab results but today I get a call from his doctor and that does not feel good. Amaey's platelets were still low and all the other numbers were petering down too. His doctor told me that he would like to check his bone marrow to rule out a relapse. Since there was no space in the unit the procedure was scheduled for Friday but I insisted and trying to do it sooner if possible. Usually the platelets and the marrow are connected. Apurva and I were very anxious by the news. My parents are with me but I could not tell them anything, did not want them to worry and we did not want the boys to overhear. We definitely did not want Arjun to know. We know he would be worried.

Tuesday night Amaey had a nose bleed and when he went to school the next day his teacher called me and to say that he had another nose bleed, I knew something was wrong. I called the clinic right away and they called me back in a few minutes and asked us to come in for a platelet transfusion.

I was cringing at the thought of being in that hospital room for 3hrs. They did another cbc and this time all his counts were really low.Not feeling good at all at the sight of those numbers. They decide to draw more blood from him to do a chemistry. We were at the hospital from 1:30 and at 6pm his doctor stopped by to talk with me. They had managed to do his procedure on Thursday at 1:45pm. His doctor looked worried but when he looked at the chemistry and the cbc results again he told me that there was a soft hope that all was fine. His Red blood was high and his uric acid had come back normal. He said those were good signs but he really wanted to see his marrow. He also wanted to do a lumbar puncture and look at his spinal fluid incase there was something in there.

Amaey has to fast for these procedures and it is amazing how he does not complain at all. Apurva and I both went for the procedure. We waited in the waiting room while they did his procedure and later took him to the recovery room. It felt like a long wait because we were talking about all the possibilities that lay ahead of us. When they finally called us in the recovery room, Amaey was still sleeping from the anesthesia. His doctor had told us that he will give us preliminary results in an hour after the procedure so when they called us at 5pm we were really panicking. As soon as the doctor walked in the room he has it's all good... it's all good... we were in a shock... we hugged him, which we never do. we were all so relived. When we talked more the doctor told us that he was really worried and had already started looking at relapse protocols. However, he has sent the marrow for few more tests to get a definitive study back but when he looked at the marrow it looked good and he saw some new cells which was positive.

So Friday, we are all happy and getting packed for a very special weekend away. We were invited to go to Skywalker Ranch as a thank you for few families of the Cars 2 team. Until yesterday we had not even thought about this weekend because we had no idea what life had in store for us. We were so glad to be able to go away and celebrate. We had an amazing dinner there and were put up in a wonderfully appointed 2 bedroom villa at the inn. Amaey seemed slow, and had started coughing a lot. After dinner he was very tired so he went back to the room and we stayed behind and mingled with everyone while Arjun was busy with some kids too. Next morning we all enjoyed a lazy start and a wonderful breakfast with all the families. Everyone was meeting back at 11am to go on a hike around the property so we went back to the room to get ready. Amaey looked really slow now so Apurva took his temperature and it was 101.5.  Not good. Usually anything above 101 means emergency. We decided to wait an hour so that things could settle. I took his temp again and it was 102.5. I called the hospital and they asked us to come as soon as we could.

We are in the hospital now and will be here for a few days. Amaey is neutropenic and still coughing a lot. His fever is under control but they need to wait for the cultures to come back and for his numbers to go back up. They have started him on ivy antibiotics too. I'm staying tonight and then Apurva will come tomorrow.

The day away to Skywalker Ranch was magical. We felt like we were gone away for a long time, in a different world where time stops and the world moves slowly. We are so glad that we all got a day of pure relaxation, now at the hospital I'm not as stressed as I would have usually been. Hopefully all will be fine and we will be home in a few days.

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