Thursday, July 2, 2009

MRD is .45%

I am very sad today as I write this entry. We did not get the news that we were all praying for on the minimal residual disease. We were hoping that the MRD would be less than .1% and she would follow the "regular" course of treatment. This did not happen. Her MRD was actually at .45%. I knew when Dr. Broxson walked into the room that he was going to tell us this. I could tell because he was carrying his giant post it note sheets of paper to post on the wall and several books and binders. I knew we were in for a new medical lecture.

So what does this mean? First of all, it is confusing. I read and research about leukemia all the time, and it is even confusing for Jerad and I. Basically, how quickly the leukemia cells disappear after treatment starts is a factor in her prognosis. If there is zero blasts in the bone marrow after 14 days, the child is considered a early rapid responder. Remember Day 14? The euphoria we felt because she did in fact meet that criteria. She was clinically in remission at that point. But now scientists are using special biochemical techniques to measure the residual leukemia....this test is 1,000 times more sensitive than the one that measured her at zero blasts. And she does have that .45% of residual disease.

For Ally, this means a change in her treatment plan. Instead of having 7 months of very intense weekly chemo, she will now have 11 months. Towards the end of the 11 months she will also have to undergo 6-8 doses of cranial (head) radiation. This will be done in Cincinnati. All of this is done in an effort to keep her survivability rate at 80%. Children with the MRD do have a lower chance of survival because of the increased chance of relapse. We are hoping that the research studies and the more intense treatment brings her percentage up. Even in the 90's, children with this MRD did not fare as well. Dr Broxson showed us a chart on this and I really wish I never saw it. But he also reminded us that they have made progress, even since the 90's, with every new clinical trial that occurs. We won't know how her clinical trial fares until years from now, but he said they always improve upon the one before it. And she's a girl, and she's less than 10, all good things.

Here is the real kicker. The statement that pretty much knocked me (and my husband) out of the chair. They have never had a case where a child was 0% on the Flow Cytometery test (the one they did locally) but showed a positive MRD when sent out. Never. Maybe somewhere in the US, but not in their experience. So here it goes...my bad luck...whenever there seems to be a very small chance of something happening, well it happens to us. Ask my sister or my Dad about that. We dealt with that all the time with Mom.

Ally really doesn't understand much. She was there as the doctor told us everything, but I can't imagine that she grasped too much of it. She knows she is going to have to have more medicine and it is going to take longer. I did break my "no sorrow" rule and cried in front of her today. In my opinion, today was even worse than when she was originally diagnosed. Jerad and I are pretty much devastated. We will eventually build up the resolve and the strength to guide her through this, but today we are down. We are sad. Who wouldn't be? I feel bad even posting this and bringing down the army.

On a brighter note...is this brighter? i don't know...her ANC was over 2000 today. Which means that she can begin the consolidation phase of her treatment in the morning. She will have another spinal and a 30 minute dose of cyclophosphamide followed by four hours of fluids. She will also start two doses of daily chemo. One is Cytarabine, given through her port, and we will have home health nurses come to our house to administer this. She will also take Mercaptopurine chemotherapy by mouth for the next 14 days. We will spend the fourth of july day off of work down at Children's. He told us plan for eight hours. I am anxious about starting a new phase and will have to learn how all of these new drugs affect her. I hate the side effects.

But since her ANC was over 2000, she was allowed to go anywhere today. That isn't going to happen all that much so we felt we had to take advantage. So Jerad took Ally, Madison, and Evan to the Hannah Montana movie this afternoon. A little diversion before we start back up.


Sorry to disappoint so many followers on this day......

17 comments:

  1. Very bummed to hear of the bad news...was hoping and praying that the MRD was lower. Sending many many prayers your way hoping for a good day tomorrow even though it is treatment day. I saw the look in her eyes yesterday, and I know she is a fighter, along with her 144 followers (and counting) fighting and praying along with her. Hope she liked the Hannah Montana movie...she said she wanted to see it :)
    Thoughts and prayers that tomorrow goes well...

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  2. You are not bringing down the army...this only makes us want to fight harder!!!
    This is not the news we wanted, but we will carry on and be there for Ally and all of you. Together.

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  3. So sad for the news today. I so wish you guys would catch a break. we will be thinking about you all tomorrow. My heart breaks for you.

    Prayers...
    Jenn

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  4. I don't even have words to express how I want to send you the courage and strength to help get you all through this next phase. I was about to head up to bed and I had to log on to see how her test came out. I couldn't believe what I was reading - I think about you guys every day and wish that there was something more that I could do. I will be thinking about you all tomorrow and I hope that the day goes as well and as fast as it can. Sheri Cobler

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  5. I was sorry to read your post tonight. Don't apologize for sharing, we want to hear all that you are going through so we can be informed and ready to support you. We will continue to pray for Ally and your family as you try to adjust to the new plan. Things will get better!

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  6. Jerad and Janel.....Ally's Army is behind you and your family. Even though this is not the news we wanted, it just means we have to fight harder. More prayers and more help are on the way. Todd and Suzanne D.

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  7. Janel...

    I know it wasn't the news you expected or wanted...and I know it feels like one more hurdle...but it doesn't take away our resolve or our hope. We are all praying for the same thing...and there is power in prayer and strength in numbers...don't you think that with an army 140+ and growing every day all focused on the same good outcome...all focused on getting our girl well...don't you think for a second...that after this fierce fight we won't have a pool party to beat all pool party's up at that barn when they say the word "remission"...don't you doubt that friend..not for a minute.

    Jill

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  8. There is no bringing down Ally's Army, only a resolve to fight harder for her and you. We are all behind her. It's a setback, but not for long. I believe it will all work out...it will just take more time.
    We love you guys.

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  9. I hate that you would feel like you've brought us down. In times of battle, that's what an army does...fight. Ally will fight. You and Jerad will fight. We will fight. The prayer behind you is overwhelming and don't think for a moment that God doesn't hear it. Let Him carry you...Love & prayers today.

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  10. I agree with everyone - - the ARMY is getting bigger and stronger and we're not stopping until we beat this!!! I know you feel it's one step forward and 2 steps back right now, but there ARE steps forward and pretty soon it will be 2 steps forward and one back, and then 2 steps forward and none back - - That's what we're praying for and we send you strength, courage and fight so you feel the Army behind you!! All FIVE of you are an inspiration!!

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  11. Nothing will slow this Army down. We all are praying for Ally. Faith,Hope & Love will guide you guys through this. Q

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  12. Like everyone else, I'm sending positive thoughts today. I am sorry that the number wasn't what we all were hoping for, but I know all of you will find the strength. Please don't lose sight of the great news of her ANC number. That means she's strong. Her body is fighting. And yes, it stinks that they've never had a case where one number was 0 and the MRD was positive, but to be honest, Ally's uniquie. Her body is unique. I'm thankful for how far they've come since the 1980's. You have so much more information and so many more wickets. This is either a curse or a blessing- I think if you dwell on ANY of the numbers, it isn't good and doesn't help the process. We did that- we dwelled for a few years, and it almost blew our family up. Then we realized, that all we could do was stay strong, like you guys, and take one day at a time. Sometimes even an hour at a time. Ally's strong- and she has fighters surrounding her that won't let her fall. Please take care.

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  13. Oh, Jammer, I'm so sorry we didn't get the result we were all praying for. I just feel like I need to tell someone that all of this is not okay with me, but I don't know who to tell, the doctors? God? I'm grateful for all of your loving family and friends who live closer by taking such good care of you and supporting you day by day. Sending you all of my strength and love and prayers, Alli H.

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  14. Since Hannah Montana was the highlight yesterday, I thought it would make sense to point out a song in there my girls sing all the time. It's called "The Climb," which basically is about facing challenges in life, staying positive, and over-coming them. If there was a way to make a kid understand what it means to fight, that song is it. While it feals like a defeat, I know with my heart there will be more wins along the way (with the ultimate win being remission!). The Army is now and will always be behind you and especially Ally. Keep fighting!!!

    Note: I will be awaiting the call from Jerad and/or Bunk to make fun of me for knowing Hannah songs. :)

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  15. We all know this will not be an easy fight. This will be a roller coaster ride until we get the final news that Ally is in total remission. You'll fight, she'll fight, and this whole giant army will fight. There is no bringing us down!!!

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  16. J & J, we've been out of town, and still are in Philly, and so just catching up today. I'm so shaken by your news. We have been praying so much, and will continue to do so. Just keep fighting, and know that we are all with you always. So much love to you all

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  17. **** I hate numbers, like Jodi said, you cannot dwell on them because they will pull you down. Yes they are important in the whole picture but one day at a time. The army is stronger than ever and we will win, we will win!!!! The next few days will be tough but we can do this. Take care of yourself and stay strong. Love you all lots

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