The morning after

Since we have talked about infusions a lot and I try to let everyone know when infusion Monday is I thought it would be important to mention the day after, more importantly the morning after.

Infusions have become routine.  Emily only says "ow" during the IV stick and she rarely cries.  So I can say without a doubt she is a tough cookie.  It's the morning after that causes us grief.  All these pokes and pricks and medicines can take an emotional toll on everyone, but especially Emily.  She is not herself a lot of the time thanks to Prednisone and infusions can really drain her physically and emotionally.  The morning after an infusion is where we see it.  She doesn't want to get up, she doesn't want to get dressed, eat, take her medicine or go to school.  She just wants to lie in bed.  I can't say I blame her.  We are suppressing her immune system, pulling her out of school early, imprisoning her in a hospital bed for hours and then have the nerve to make her go to bed a couple hours after we get home. 

I will blame this all on adjustment.  It's not an easy thing to adjust to, her body needs the infusions because by Friday night she'll have a rash again and soon after joints will hurt and it will be hard to get up in the morning because she is stiff and feeling yucky.  The problem is we get used to getting better after going to the doctor.  We take some antibiotics or other form of medicine for two weeks, sometimes go in for a follow up and then we recover and get on with our lives.

I think this is when not having a cure really hits home.  Emily wants to know when she will be done with infusions and medicine and I have no answer for her.  I wish I could say there were only two more, but it's a steep climb for her.  Some children respond immediately and are off steroids and doing fewer infusions and some, like Emily, still have elevated white blood cell counts and rashes and joint pain and there doesn't seem to be a light showing an end to the SOJIA tunnel. 

Tomorrow morning things will be back to normal and we'll be assuring Emily she doesn't have another infusion for another week.  Then infusion Monday arrives and we start all over again.

These children deal with a lot.  We are blessed though; Emily is in school (most infusion center children are not able to go to school because they are on lots of chemotherapy and dealing with cancer), Emily is happy and relatively healthy.  It could be better, but it could be a lot worse.  For now I am happy to keep the status quo because I fear if I start longing for better I may actually get the worse and four hours every other Monday is no problem when compared to being a patient in the hospital or having an empty bed with no six year old to wake up grumpy in.