All test results in!

Brooke does not have cancer. All of the test results are in and are negative. Praise God! It has been one of the longest, most exhausting days of my life! I feel like I've been run over by a truck! This tough momma has done nothing but cry all day. My stomach is torn up, I feel like I'm aging by the minute, and I had to get my hair colored last night to cover the gray. At noon, I did what any depressed woman would do...I went shopping. (Don't tell Mike!)

Seriously, I think the past 3 months of stress came to a head today. It turns out UNM had the rest of the test results at some point between last week and today and never bothered to call. This was the icing on the cake for me. I lost it this morning with Dr. Libby's PA. I know none of this is her doing, but she happened to be on the other end of the line when I called. First of all, if I hadn't been so diligent in ensuring things got done - would they have gotten done? If I hadn't called to check on the results repeatedly - would they have ever called me? It’s taken three months to figure out that Brooke does not have cancer, and I've had to initiate 75% of the process. What is wrong with the system? What if it had been cancer? 3 months is a long time! We've been told since day 1 how dangerous neutropenia is, yet the process to run 4 tests takes them 3 months. It makes no sense to me. And not so much as a phone call to let us know that cancer had been ruled out. Inexcusable. I told the PA all of this. I think she was crying with me at one point during our conversation. I asked her to put herself in my shoes and asked her, as a mother, how she would feel not getting a call with the results after worrying the past two weeks? How would she feel having to seclude her child who wants nothing more than to be around people and be able to offer no explanation to the child as why? And how would she feel worrying and waiting for 3 months for a test date, or test results, or some explanation as to what the future might hold? I even asked her about compassion and about doing the right thing. I was never ugly to her, nor did I say anything that wasn't brought about by their actions. I simply stated the facts. And I felt better in doing so.

About 4 hours after my complete melt-down with the PA, Dr. Libby called. Thankfully, my blood pressure had come down by that time and the tears had temporarily dried up. He was very nice and apologized for not calling me. To make a long story short - he has no answers, which is no shocker. Anyone who knows Brooke knows this is how it would turn out. She's a rare and beautiful medical mystery. The doctor said the neutropenia could be caused by a virus in her body, such as Epstein Barre, or it could leave as quickly as it came. He doesn't know. He doesn't want to treat it right now, he just wants to watch it and monitor it and see what happens. We will see him and the Immunologist in late June/early July for blood work and another CT scan.

In the meantime...if Brooke gets an infection, she has to take a GCSF (Neupogen) shot to boost her bone marrow. (A trip to the ER.) This would be the treatment she would be taking if the doctor chose to go that route. From what I understand, Neupogen is a hormone that stimulates bone marrow. The shots are done SUBQ, have nasty side effects in some people, can be very painful, and are super-expensive. We also talked about the pending dental surgery; he told me to go ahead and work on getting it scheduled but that we would have to work with him prior to the surgery to get Brooke's neutrophil levels up. It's never easy with Brooke, nor does she ever get anything that can "be fixed." And yes, it does get harder as time goes by. The medical problems she has developed over the past 5 years are BIGGIES! Now you know why I'm a basket case. Or is that a nut case?? As you can see, we are still in a super dangerous position, but it looks like its one we will have to live with. One day at a time and with God's help.

The good news: Brooke is going back to school part time next week. YEA. She's going to be so excited! Dr. Libby wants us to slowly start re-introducing her into society and see what happens. She also is going to the area Special Olympic track meet Saturday in Carlsbad. We leave at 6:00 AM if any one wants to go.

Thanks for the prayers – please keep them coming. Brooke does not have cancer, but she still has plenty to contend with. What a tough little girl!!