It is hard

Today is day 21 of the Intense Dexamethasone phase. We survived it but it was hard. Really really hard.

Amaey had 3 weeks of Vincristine and methatrexate and Peg and Dexa... you name it and he got it in the past 3 weeks. He started out really well. The first week he was great I also took him to his music class. Second week he was slowing down but he was still in good spirits. His eating habits were crazy as we had expected but he wasn't really eating much. And he did not wake up at night for food. Yes he did ask for milk and He would get wet with perspiration (due to the meds) so he would come and sleep with us.

This time he seemd put off with food. He would ask us to cook up cuisines but he would look at it and smell it and be totally off. He would just stay in his chair and put his head down and rest. When he would eat it would be for the entire day with some sleep breaks in between. But 1 or 2 bites of every food, that's all.

from March 29 to April 4 Arjun was down with fever. 102-104 temp. non-stop. And that was the week my parents left to go back to India. I must admit it has been an emotional roller coaster for me. It took all of Apurva's and my strength to not loose it on the kids. They were so needy, so insecure. We were on 24/7.

Luckily Arjun is much better now and with spring break he has got his needed rest and back to normal. And that is great because he is my best helper. Such a wonderful brother.
This morning he sat down in the TV room to watch a show with Amaey and Amaey made him leave. Arjun went to take a nap in the bed with Amaey and Amaey kicked him out of bed. Arjun was really hurt. He came out crying. I could see that he was genuinely hurt. I sat down with him and had a really long chat. I explained what Amaey was going through. Reminded him how he felt when he was sick and just imagine feeling infinity times more bad... I think that helped him because after that chat Arjun made sure his brother had everything he needed.

To add to his mood bouts, uncontrollable crying moments... Amaey has developed mouth sores. They started out lite and in 3 days took over his entire mouth. It has been particularly hard for him. He cannot eat, does not feel like drinking and sometimes can't gulp. He wakes up crying and he can keep crying for hours because he can't stop himself. He is really slow and cranky. Sometimes I feel like there is another person in his body.

He is a kid that likes routine. He has to take 5 tablets twice a day. Fine now that it is routine he can do that without a fight. Now I add magic mouthwash and warm water gargle and no solid foods... that's it all hell has broken loose. He wants waffles and toast even though he cannot swallow. How do I explain to him that soup and juice and warm drinks are best for him.
However, since this evening I think he gets it. He gets it that I'm working for his good. That yogurt or hot choclate might be better than bread. Oh good.... I'm so glad he gets it because I was about to breakdown.

This thursday we have a break from his treatment. So hopefully his body and mind will get a break before his next 3 week intense phase begins.