Another discouraging day...

Yet again. It was another discouraging day for us. I had great hopes to drive to the clinic today and be done with this round. Get Ally off of her fluid and get her feeling better. Only to have my hopes taken away again after waiting three hours for her bloodwork to come back. Her level was .48....only down a bit from the day before when it was .64. (needs to be .1)

This is playing out like a broken record. Every day, I drive down there. Say hello to the same security guard. Get up the elevator while everyone stares at my bald child with the mask on with the tubing coming out of her shirt and tethered to me. Check in, get a room in the clinic. The blood draw. Waiting. Waiting. Learning to crochet (we are trying). Waiting. Getting the bad result. Grilling the doctor on what/when/whether I should be worrying or not. Back to the pharmacy...more meds. Get with the home care people and get a new bag of fluid and a new pump. Give Jerad the bad news...Walk out to the car. See the same lady in the parking booth who now lets me go without paying. Not sure if it is out of pity or because she sees me. Every. Single. Day.

And as such, we are scheduled to do it all again at 1:30 tomorrow.

Poor Ally. The fluid makes her feel bad. She hasn't eaten much of anything in a week. Because this chemo is not leaving her body properly, the side effects will be worse. They are currently worried about painful mouth sores. She also has belly pain. It all is hard on her internal organs, particularly the kidneys. I pray that she doesn't have damage. As of today, her kidney blood test looked okay.

So Dr. B upped the rescue drug...which protects her, but does not make it go any quicker. He did speed up her fluids from 145ml/hr to 150ml/hr. Maybe that will make her pee it out quicker. That is the only way to get it out. At least he didn't admit us...I was kind of mentally preparing for that.

The doctor also informed me that he could not get the MRD results for her. He has exhausted it, and he just can't get it. That is the minimal residual disease number that they tested with her bone marrow specimen about 5 or 6 weeks ago. The number I was just dying to know. He said we could try to find someone that will do it for us, but we would have to put Ally through the procedure again. Another letdown. I am trying to take it in stride. Maybe I am just not meant to get that number. It is certainly not for the sake of trying. I have worked every angle and every doctor to get it.

Finally, we talked about the next round of treatment. Ally has one more in-patient methotrexate stay and then we move on to the next round. And it is going to be very hard he tells me. Just like the first month. They repeat all the same meds again. So we have that to look forward to. It will start mid-November and go through the holidays.

All of the suffering, I know, getting old to read about everyday and even worse to live. Jerad tells me I can't tell you all of the clinical stuff anymore...too depressing. I am going to lose my loyal readership.

Soooo the silver lining to this picture is that I have wonderful friends who came to my rescue today. Lisa came and sat with Ally while I took care of Carly (and kept them apart). Lisa, Nicki, and Suzanne collected all of my laundry and did it for me. (It was a lot) Changed the beds. Ran the vacuum. I have several neighbors making me food. Pastor Gil and Keli spent over an hour with me trying to give me encouragement and making me promise to take care of myself and praying with me. And offering me the opportunity to do so.

I am not good about asking for help. Most of the time, I won't. I never want to be a burden to anyone. But today I gave in and I feel so much better tonight that a few things got done around here. So thank you so much for just stepping in and helping, no questions asked. I realize I can't do this all myself.

I am also thinking (and grateful) to one other friend of mine. George Arnold. He ran the Detroit half marathon this weekend in Ally's honor. George is a big tall guy...not really the running sort. Nothing against him, but just what it is. As he practiced for it, he said he would always think about Ally. If she can go through what she does, then I can do this. He said his back started hurting at mile marker 1. Again, thoughts of Ally pushed him through. And he did it! We are proud to have friends like that!

Maybe tomorrow will be our day. But if it isn't, I will just take it as it is. And maybe learn a little more about crocheting in the process.