RockingJuJu

Today was the big day for the yearly trip with Gramma to begin. Both of the kids have  really been counting the days. This year they are taking cousin Angela for her 1st Trip to the beach. She was so cute running around telling me all day that she was going.

Our day started out with getting Jacey into the doctor because her illness had finally seemed to be catching up with her. She looked awful all weekend and around her eyes had become puffy and red. I was waiting for Monday to get here all weekend and of course come Monday morning her eyes cleared up. Tuesday she woke up with a sore throat and congestion. This morning she had the wonderful and very familiar ticking in her ears. The doctor was not at all shocked when she took a look in her ears and declared the looked like a nightmare and followed that up with the announcement that her throat didn't look that hot either. Jacey says it was all her fault because she had so proudly declared that her ears had been a problem since we went to the ear specialist and then 2 days later they were hurting. Putting of surgery is no longer an option because this is clearly not going to stop. Another thing today was that her blood pressure was high. Yet another thing I have been wanting to avoid but looks like I need to call the kidney doctor. The blood pressure could be the cause of the dizzy spells...On a good note she had not gained any weight!

Today we got news that Jerry Rabb pasted away. He has worked with Phil for the last 9 years and this hit very close to home. Jerry was diagnosed with AML (same cancer as Jacey had) last August. Jerry had been doing well with his treatment and was near the end of his treatment when he relapsed about 2 months ago. From what I know they were not able to get him back in remission and he lost his fight today. My heart goes out to his family.

Last year Jerry was one of the people that we walked in Honor of during Light the Night. This year we will walk in memory of him. From the time of Jerry's diagnosis he began to raise funds for the leukemia society. This is such a horrible cancer for adults. We have know 3 adults that were diagnosed with AML over the last 2 years and sadly each of them have lost their battles. To many of the children I follow that AML have relapsed this year, so many that I have lost count. It really bring about that hopeless feeling.

Jacey has not been feeling well for the last few weeks. I have tried and tried to not let it get my mind back it the panic mode but I am quickly heading there. I don't know what is wrong with her and keep telling myself that it is just her weak immune system, which it probably is. I have honestly gotten much better about not freaking out over every little thing. Even though there is always that little voice in the back of my head. The little voice that tells me it might be more than I think it is. The little voice that says don't just assume it is a cold. The little voice that reminds me how I almost lost her....because I though it was nothing. I think that is one of the hardest things for me. She keep telling me she was really sick and that something was really wrong and I just wrote it off as her being a drama queen. So now I have a child that is going through cycles of being dizzy several times a day, stomach pain of few days a week,  is fatigued more than not, looks pale, looks swollen and has a lot of numbness in her arms and legs. Granted this doesn't happen all at once (THANK GOD or I would go crazy). These are just not problems that an 11yr old should be dealing with. We don't go back to the clinic until August or September. I miss the weekly blood draws a lot. They always created a great deal of panic yet relief at the same time. It is really hard now that they are only testing her every six months and soon only once a year. I guess when we hit the 2 year mark her chance of relapse went down from 80-90% back to the super comforting 50%. I don't know they are just numbers and they really don't mean anything because each child has different reactions to different things. They told me that over and over again during her treatment but now want me to find relief in the numbers that they told me mean nothing. Jacey doesn't really fall in the numbers because her treatment was never completed. They have never had that happen before so where does that leave us? I know I know and I am VERY GRATEFUL! It is just so hard to have it hanging over your head everyday!