Thursday, April 29, 2010
Last few weeks have been quiet, busy, hectic, and restful at the same time.
Amaey has started his intense maintenance phase. We have to take him in every Monday. he gets a lab draw and based on his counts things proceed. Last week was round 1 and he got Vincristine, Peg and 7 days of oral pills of Dexamethasone. Sometimes I feel like we trade one monster for the other. This whole week if you see Amaey it is like you are watching a ghost. He is so tired, moody, and sad.
Luckily next week he only has Vincristine. It is the Dexa that drives him crazy. It is a steroid and chemo.
I finally got to catch-up on work. So much had piled up that I did not know where to begin. So many fires to fend with the students. I'm also re-writing a class and those deadlines had piled up too. 2 weeks of just sitting and working has helped. I'm finally caught up.
Arjun has had some really busy weeks too. He had state testing, Science Fair due, Social Studies paper, swim meet, and tabla concerts. I suddenly went full throttle on his life and I feel a bit caught up with him too.
We had a scare with Arjun, his urologist saw his routine ultrasound and wanted some more tests. He had to undergo a procedure on the 15th. We were really scared of the outcome. On the 27th he had another test and then we got to meet with his Urologist. Long story short, all is fine. He was born with one weak kidney and the doctor thought that the kidney was failing and we might have to remove it. We know that at some point in his life we might have to do this but as a team we were hoping that wasn't going to happen at this stage of his life. Luckily she saw no extra damage.
All I can say is- No one knows what the future can bring. Put your energy into now.
Tuesday, April 20, 2010
Well, this marks the official end of intensification.
Today we went in for Amaey's Etoposide. We also had a doctor meeting to go over the plan for the next 6 months. They had to hydrate him and give him pre-meds because he had a reaction to this drug. They also decided to administer this medicine at a much slower pace then usual. So our day started at 8:30 in the hospital and we did not get done until 5pm. At some point I had to leave Amaey alone and go pick up Arjun from school and bring him to the hospital.
Arjun was feeling sick, his head was hurting and he threw up as soon as I picked him up. Luckily I knew that he wasn't sick. This is his body's mechanism. If he has a cough or has eaten food that does not agree with him, he can throw up and in few hours he is as good as new. I was sincerely hoping that he was cleansing and not really sick, because he was in the hospital, in Amaey's room while Amaey was getting his chemo.
We finally drive home at 5pm, Arjun fell asleep in the car and when he woke up he was a new person. I was so relieved. I was also happy that Amaey did not get any reactions from the meds and we came home.
Wednesday, April 07, 2010
Last hospital stay in the protocol is done!!
We are home and so happy that the stay did not drag more then planned.
I dreamt that Amaey had to stay for 4 more days and I jumped out of bed and touched his forehead to make sure he did not have fever. He was nice and cold and I went back to bed, fell sound asleep. This morning they came in with his levels and said he was good to go, of course it takes hours before they can finally set us free, but we were not complaining... we knew we were homeward bound.
Last night I did go to PF Changs while Amaey was in the playroom. Amaey wanted me to pick-up food for dinner. We watched the Food Network and ate our yummy dinner.
Monday, April 05, 2010
We are in the hospital for Amaey's last hospital stay. He will get Methotrexate this time.
They are watching him very carefully and checking his sodium levels often.
So far they have started his hydration and around 11pm they will start his chemo which will go on for 24hrs.
Then we just wait for the chemo to clear out of his system before we can go home. Hopefully it is a simple in and out.
Arjun, Hetal, Amaey, and I are in the room watching Cody Banks 2. We are waiting for 6:30pm so that we can go upstairs to the playroom.
Arjun is on Spring break so it should be nice for Amaey.
Friday, April 02, 2010
Amaey went to his schools open house on April Fools day. He was so excited to be there. He had a big plan and this is what it looked like-
- Ma, drop us at school and look for parking
- Didi and I will first go meet My 3 K/1 teachers
- Then we will walk up to my class
- Go down to Gabriel's class
- Then walk over to Christopher and Elias's class
- Go to the art show
So I asked, how will I find you... no answer.
Finally, we did decide to meet at his class before he went galavanting around the school. It was really nice to see some of his assignments on display. What was most touching was to learn that every morning they still include Amaey in the roll call protocol. How amazing is that?
Also, they had a project called the missing person and the class got together and created a profile to fit Amaey. He is really lucky to have such amazing teachers.
Thursday, April 01, 2010
We went in for Amaey's CBC today and everything looks good. Now we just wait for them to call us on Monday to admit him for his Methotrexate.
This time his doctor does not want us to go to El Camino instead we will be at LPCH. They still haven't figured out why he got so sick last time so they want him under close surveillance and monitoring.
My niece is visiting from Florida so at the moment we are all looking forward to a good weekend.