RockingJuJu

Here we are 21 months into remission. I have gotten better about not jumping every time she gets sick. Yet today I find myself back in that panic mode. Yesterday I was fine with her not feeling well. It was fine that her ear and throat hurt. It was fine that she slept until noon. It stopped being fine when she got up in the middle of the night running a fever.

Anytime that she gets progressively worse it sends me into that panic mode. I know that sound crazy but until you have watched your child have what you think is a "normal" illness and they get progressively worse over the next few days and end up where we did it will probably always seem crazy. I have a great feeling of guilt over not knowing she was dying. She told me there was something really wrong and I ignored her, just thinking she was wanting attention. That is a HUGE weight on my heart.  That 1st few days in the hospital I watched the doctors swarm around her. She was hooked up to every machine you could imagine and some none of us have ever since. How could my child be this sick, how did I not know?  I can not tell you how overjoyed I was to get her out of that ICU. To see her eat and laugh. I swore to myself that day that I would never again ignore her telling me something wasn't right.

It is hard not getting her counts as often as we used to. It is just a comfort having them drawn and hearing everything is fine. In the beginning I got that comfort every 3 days. Now it is every 3 months. If she would just not get sick I would be fine with that. I know she doesn't miss it at all. What I do know is if the leukemia ever does decide to come back it will come back stronger. I honestly don't think we will have much of a window if that happens. It is just a very scary thought and what gets me into these panics. Do I have time to wait for the rash to show up or will it be to late? It is just such a large load to carry.

What I would like for Christmas this year is:

• A cure for leukemia
• More awareness (since I know I can't have the cure)
• For people to understand