Friday, September 18, 2009

Good News, Not so good news

I have some good news and some not so good news. Not necessarily bad news, but sort of. So I will start with the good news. Dr Broxson came into Allison's room this morning on rounds. He told us that her spinal fluid from the spinal tap tested cancer. Good. He also spoke to the team at Miami Valley Hospital that analyzed her bone marrow for leukemia cells. This is called her flow cytometry. It came back at a 0%. Again no cancer. He told us the doctor over there blew it out to the 100,000's of cells looking for leukemia and found nothing. He also told us that the doctor said he would have been able to see a .45% MRD like she got on the Day 28 test. And he did not. It was confusing to us, because back in June the Miami Valley test showed 0%, but the Johns Hopkins test showed .45%. We were wondering if the Valley now has some new technology or if they did some further testing. We are waiting on the answer to that question. We still wanted to see what Johns Hopkins researchers had to say.
And therein is our bad news................Dr Broxson says that he talked to his contact over there and they are refusing to give us the MRD results for our daughter. Dr B thinks someone must have gotten in trouble at some point for letting that information out. I know. What in the world? They say they do the test strictly for research purposes and not to inform the patients. Again, her protocol would not change as a result of it so they probably think we don't need it. But we would just like to know. Put yourself in the shoes of the parent and tell me how you could not want to know that information? They probably don't like to share the info, because then we might pull of out of the study or something. That is the only reason that I can think of. So of course I think this is horrible. It is our daughter. Her bone marrow. She suffered as they pulled it out of her. I am just really irrate about the whole situation. Not mad at Dr. B. But mad at Johns Hopkins or whatever kind of medical society that would not allow patients the rights to their own information. Sickening. We have been waiting this WHOLE time in hopes that we would get a test back that showed her MRD as undetectable. And now we have no resolution.
So now Dr B is going on vacation. But he says when he gets back he is going to talk to the doctor over at Miami Valley and see if some of their technology has changed. See if their technology is comparable to that which J.H. used. I guess that would give us a little bit more peace of mind. He said we could look for someone that would be willing to do it (not sure how I would go about that), but then poor Ally would have to go through the whole procedure again. Something I would not really want her to do (but would consider it).

I am tired of the unfairness of this whole situation. Kids don't deserve to have to battle cancer. They are supposed to be outside playing on beautiful weekends like this, not laying in the hospital getting pumped full of chemo. I am tired of it. I am tired in general after being up most of the night with Ally last night. I was frustrated and annoyed even before I heard we weren't going to get Ally's information. That just capped it off for me. I feel pretty deflated at this point.

Ally is handling the chemo pretty well so far. Her main complaint today was boredom, but she did have a quite a few visitors and even played games with another leukemia boy named Davey who is 10 and "lives" across the hall. She is down to 61 pounds and they are getting concerned about her weight. They are giving us all kinds of supplements but I know I won't be able to get them in her. She is supposed to take in 3000 calories a day, but likely gets 500. She can't keep going at this pace, so they are putting her on a medication to stimulate her appetite. Her protein stores in her blood are running out and she is getting very low on the BMI scale. I hope this works. We did manage to get her to eat about half of a fairly large steak that my friend Laurie brought for her lunch.

So the boredom led her to the idea that she would like to decorate her Dad and her Grandpa's bald heads with stickers and jewels. They were just lovely. Don't you think?

Also, for all of the people who are coming in from out-of-town for the walk, we have a suggestion for a hotel for you. It is a nice and new hotel and is located in Beavercreek (about 20 minutes from the walk) but it is right next to Jerad's office building. Here is the address:

Hilton Garden Inn
3520 Pentagon Park Blvd
Beavercreek, Ohio, 45431

There are lots of other hotels too, this is just our recommendation.

So far we have people coming from Wisconsin, Illinois, Michigan, West Virginia, California (wow!) and tons of people rolling in from Southeast Ohio. We currently have 300 walkers. And I know there are still people who are not signed up that might even show up that night. The largest group to ever walk in Dayton. Thanks so much!

I will post more information and details on the walk here soon.


  1. Sounds like Miami Valley took the test a bit farther this time for results. That really stinks that John Hopkins will not release the results. But the good news is that there is no cancer in the results that we do have and they seem to be even more detailed than the first time. Hang in there kiddo, you are doing a great job and it looks like Ally is holding up as well. Love the stickers!!! This may start a new fashion trend for dads and grandpas, look out. No one deserves to have to battle cancer, especially kids. You are very strong and doing a wonderful job. One day at a time, and be sure to remember the good days and all the great things you and your family have done. Extra thoughts, hugs and prayers coming your way.

  2. Rejoice in 0%, that is a fabulous result!
    Try not to exhaust yourself in negative what ifs, it won't change the treatment regime. Hang in there,

  3. Hang in there, Janel. Not much else to say. You and your entire family are stronger than this disease. It stinks that they won't give you the JH results. So you are left with the information you do have, which is all POSITIVE! Please don't forget that. My thoughts today are for sleep for you, home soon for Ally, and more calories in her. So excited for the HUGE group of walkers. Congratulations.