Words are hard.

Having a hard time putting into words how I have been feeling lately. Charlie has been doing so well that sometimes I forget that he has cancer. Looking at him you wouldn't realize at all that he has cancer. He looks robust and healthy. I've never wanted him to look sickly but somehow him looking so well makes it harder to swallow. Knowing that his body is working against him from the inside out isn't easy to know. Not looking sick just fools you into forgetting and constantly thinking "hey maybe it's not that bad"! But I guess the reality is it's pretty bad.

When you google various cancers you can find out so much information about the various types of cancers. Foundations, support groups, financial assistance, clinical trials, marathons, wrist bands, t-shirts etc. etc. etc. But when you Google JMML there isn't much out there. It's a form of leukemia and there is plenty out there about leukemia but having a rare form of leukemia that only affects 25-50 children a year leaves you feeling like you are alone on  your own little island. While it's nice to be able to talk to other parents whose kids have survived cancer sometimes you just need the connection of a parent who has dealt with the exact same fear as you. A lot of leukemia have a survival rate of 80% which is a drastic difference from 50%. It's only a 30% difference but when you are talking about whether or not your baby will survive that 30% is the size of Antarctica. I'm tired of whining about how unfair it is...but it is unfair. It's unfair for a baby to have cancer (any child really) but it's even more unfair to have some ridiculously rare cancer. I mean how the fuck does that happen? Where is the fairness in a cancer where half the children die and there is very little out there about it? No one is ever going to sell a kitchen aid mixer in a special color to benefit research for JMML, hell JMML doesn't even have a special color or ribbon. I assume leukemia as a whole does however.

I try not to dwell on all this too much because no matter how awful it is I should enjoy my family while I have them. I should enjoy Charlie while he is here and I should just assume that he will always be here. Right now his bloodwork looks amazing which brings us a lot of hope because JMML is a pretty virulent type of cancer and the fact that he's stable is good. We have it hanging over our heads that if his JMML goes away (yay!) we still have the risk for other cancers and vasculitis hanging over our heads. Plus the hydrocephalus and infection risks hanging over our head. Then there is the fact that we still have no idea what is going on inside of his brain. We have another MRI coming up and this is the big one. This is the one where they will think we will be able to see what kind of delays he may have, whether or not he suffered brain damage from his brain bleed among many other things. We also have a neurodevelopmental exam coming up which will again determine what kind of delays Charlie may have. We are also starting physical therapy to help him with his low tone (at 3 months he still has no head control and is still a very hyptonic floppy baby) and hopefully we will get somewhere with that.

Because I have a tendency to be a negative person sometimes I wonder what the point of things like physical therapy are because we've been warned that a bone marrow transplant & radiation could leave him so weak he could end up in the PICU for months and months while he recovers but I have to remember that no matter what his ailments are he's still an actual baby and we need to treat him as such. He may never be allowed to breastfeed and he may never be allowed to take much from a bottle and we may not be starting solids in the first year of his life and he may never walk but he's still an actual person and we have to fight and work hard and help him in every way that we can.

I spent my entire pregnancy excited for the end because I knew Charlie was going to be our last baby and I was just excited to get the pregnancy over so we could just get on with our new life and live our new version of normal. Of course this isn't really what I was expecting. Now I just need November & December to end because I am ready for 2013 to happen. I don't know if 2013 will bring us good news or happiness but I am ready to find out. I am ready to close the door on 2012 and start fresh and new and see where next year takes us. I may not like what 2013 brings us but I need to see the dust of 2012 in my rearview mirror and move on.