Thursday, June 10, 2010

Maintenance Delay....

And thus it wasn't meant to be. Yet. We got word today that Ally's ANC was not high enough to enter into Maintenance yet. It is very frustrating to me, because her ANC had been high about two weeks ago. And the doctor told me the last two chemos that he gave her should not lower her counts anymore. I thought we were home free. But apparently, the chemo they gave her at the beginning of the cycle is still doing what it is supposed to. Her bone marrow is suppressed and she is taking a little while to bounce back. I was told that this is very common, and I have seen others who have gone before us have this exact problem. Especially, in her case, with getting the double dose of chemo and radiation. So, sigh. I don't know what to say. I wanted to move on...I wanted to plan a vacation and get the ball rolling on a few things, but we will wait. It is going to take them a little while to regulate her "at home" chemo anyway, and I am planning on that.

Instead of a spinal tap tomorrow, she will be going to the pool. The only thing that Ally had asked to do for pretty much the whole summer was this cooking camp at Miami Valley School. And it is next week. When her spinal tap should be rescheduled for. Ugh. She had told Dr B about it. Thankfully, he is working around this wish of hers. Her spinal tap has been moved to June 22 now. She will have next week free to do the camp.

Really, Ally is feeling great and that is what matters. Even with the lower ANC (410). She is swimming all day long....the last kid to leave the pool. She is playing baseball with the neighbors at night. Helping me in my garden. Fighting with her brother. It is all good. We even went to the zoo the other day (Thank you to A Kid Again for sponsoring this event for the kids) The closed the zoo down just so the "sick" kids could have it to themselves. I never thought I would be that family, but I am and we enjoyed the crowd free treat.

I wanted to share yet another video on here. This video was played at the fundraiser party that we had for LLS. It is a day in the life of Ally Barnett. It is Ally starting out at home...taking her meds....heading down to Children's...and getting her port accessed and chemo. She walks over to visit her friend Amanda in the Almost Home Unit. This video was created by Joel Menken, a very creative friend of mine from church. I do have to mention that this is a very good day for Ally. No pain, no complaints, just a very typical chemo infusion. This does not show the months of apprehension that goes along with getting stuck with the needle. This does not show the nasty side effects that the chemo can bring on. There are no leg shots. This does not show the fear in my eyes or hers. It was made just a few weeks ago. We were seasoned veterans at this point. But it does give people a bit of a realization of what she does now and will continue to do for 16 more months.

Click here to watch Ally at the hospital....

Please say an extra prayer for a fellow leukemia fighter, Kourageous Kate, who is currently in ICU and in very critical condition. My thoughts all day for the last few days have centered around her and her family. Keep fighting Katie....


  1. What a strong, strong, amazing girl Ally is. I knew it in my heart from the first time I saw her face - but to see her with a smile on her face as they are poking and prodding her and she has such a calmness about her - truly a once in a lifetime girl. Her spirit and smile light up a room - even a hospital room - she is going to get to the other side of this and will live her life as we all should - she is a beacon of light for all that know her. Hoping that her ANC rises soon so you all can move into the next phase - steps closer to cancer free. Take care. Thinking of you all - always. Sheri Cobler

  2. Janel-
    Thanks for posting the video. I actually tried to find it last week on you tube, but couldn't. You all are so very strong, and you are winning. I'm sure it was disappointing not to make counts. But that does mean that the chemo is doing it's job. And you know her counts will come up. It's great that she gets to go to cooking school and enjoy the pool a bit. I hope you are able to take a breath too.