What I want for Christmas

The other day I was asked the question 'what do you want for Christmas?'
and I said hmm I don't know I'll have to think about it.  Today sitting in the hematologist office the answer came...  I want this illness and all it entails to take a vacation.

The reality is no illness takes a holiday. In 2003 the holiday season started 
with Cody spending 10 days in the hospital at Thanksgiving. Last Christmas Hannah could barely walk without feeling faint. This week we are battling with the insurance company once again over medicines.

Illness doesn't stop because you have special plans or a lot to do. We have
sat out of many holiday activities just because of no energy for said celebrations or just too many germs floating around to be exposed to right before an infusion. Everyday seem to be a new fight, with some good days and some bad.

Today was a day mixed with good and bad. The good news is Hannah's iron
levels are holding steady. Which means the Actemra is helping to keep the disease in check and resulting in less anemia. After a crazy busy exhausting yet thrilling show week this is a victory and praise report. But.. In my last post I said Lucas was switching to the new infusion medicine Actemra, well insurance is refusing this until he has tried Remicade. Remicade is a med we have tried to steer clear of it has more side effects and risks but does work wonders for some people and with the psoriasis patches Lucas has been 
experiencing may be a winner.

We have to have another Orencia infusion at home, and we had already 
been discharged from home health because of the medicine switch. Then
the first 2 Remicade infusions must be done at Hershey.. chance of a 
reaction are very high with the 2nd infusion. So after those two then we can switch to our local hospital and not have to play "Rock,Paper, Scissors" on
who gets to try and take off work to hang out with our sweet guy at the 
hospital. Oh and its January these two infusions are scheduled for so we 
work around bad weather and again have to be hyper vigilant to avoid infections.

I am not likely to receive my Christmas wish of a holiday from this illness,
however a line from Sundays teaching has been a lifeline on days like today "God won't always keep you from trials -but He'll always keep you through
trials".

We are learning to not grieve the things missed but to take joy in the
opportunities we are able to partake in.