We have really been enjoying our time at home. Especially Ezra and Rowan. Its interesting to watch how the relationship between the two of them has changed. Children are so much wiser than we give them credit for.
Rowan has taken up caring for Ezra, he will bring him snacks, and juice, and help hold his medicine ball when Ezra walks around. They really love each other.
Ezra has been so busy playing. The stiffness in his legs has gone away and he is getting around great, there is still a little limp, but it is drastically better. Him and his brother spend hours playing , its so great to see. They both needed a detox from all the TV they watched over the last month.
As for the medical aspect to it all, he is still taking a ton of drugs. We are now in the phase of his treatment that they call “Consolidation”. We have to give him antibiotics 4 times a day, 3 of which are on 8 hour intervals. These are the little medicine balls we hook Ezra’s PICC line up to. We will be giving him those until they think his wound has healed up enough.
On top of the antibiotics he receives oral medication as well. He gets oral chemo (6MP) every day, different dose depending on the day, he gets Septra (another antibiotic) on Friday, Saturday, and Sunday. He also takes an antifungal daily to prevent yeast from growing, from the antibiotics , I think. He really hates taking all of these oral meds, but we get them in there.
My husband is also changing the dressing on Ezra’s wound (from his incision) every day, from where they removed the port. That is probably the worst part of Ezra’s day. It is really gross looking, since the infection was inside of him, they want the wound to heal from the inside, out. So they basically left it open. Its about the size of a quarter, which Anthony has to put packing tape in to every day. As soon as it heals shut I think he will get another port put back in.
He is losing more of his hair and his chubbiness daily, he doesn’t seem to care though.
I can’t even put into words how great it is to be out of the hospital, and back to a semi-normal routine and life. Its almost easy to forget about the cancerous elephant standing in the room.
You can read about our 4th of July here.