Its the beginning of March now. We try and keep daily notes for our own personal records but blogs are few and far between. We have been busy keeping life in order since Christmas. With me back to work and at 6 days a week it's busy around here for sure. Anita is and will be off work for quite some time but it feels like we need me home more to help out. We are planning of taking advantage of the new EI for parents with critically ill children benefit but are waiting for the bill to be passed. Politics... This will give us the summer off together as a family. I think thats fair considering we lost last summer to 3 months in the hospital. Many fun day trips will be in order I think.
Nevan continues to respond well to his treatments. He rotates a revolving 3 week schedule. Week one is always difficult. The steroid he takes alters his mood and makes him very sore. Think of being high and having a bad flu at the same time, oh and your 5 and don't know why you feel like this. That's nevan for 6 days. If we take him to school the day after the drugs stop he still feels sick. He tries to go to school for the day but only wants to stay for and hour. He loves school and would never ask to come home otherwise. We are used to it but it's still hard to watch. His eyes are glassy and foggy at the same time. He gets depressed and just want to sit in the corner of the couch or sleep all day. He walks himself to his bedroom 3 times a day without even telling you sometimes.
The following two weeks are filled with our normal happy silly boy. Nothing gets him down. He has even stopped crying and getting worked up about needles. Every visit to clinic is all about being brave. And he is. In 4 more weeks there will be one less thing to be brave for though. His last leg needle approachs. 30 in all. Once finished he is supposed to regain his strength and appetite.
His hair is starting to grow back. It's too early to tell but it may not come back to it's original dark brown. Maybe lighter they say. He lost a lot of his eyebrows and eyelashes too. It makes me furious to think it won't return to its original colour. I want so much for there not to be a trace of this once the treatment is finished. Unfortunatley he already has many scars. Hopefully creams and time will help with them. His perfectly little body is damaged with scars, puncture holes and bruising that are still trying to heal from 6 months ago. I hope he remembers nothing from this and at 5 years old he probably wont't.
Nylah is doing well. Brother and Sister get along and have lots of fun together. We feel like Nylah doesn't get to do a lot of the things Nevan did at her age because we get stuck in the house a lot. We really need for this summer to be as hospital free as possible.
We should have some good stories to share in the coming weeks as a small celebration will be in order for his last leg needle. We will keep you posted. It's 3:00 am off to bed..........
