A new diagnosis

So we know what is going on now, but are not yet sure what it means for the long term. They have diagnosed Maddie with a seizure disorder called Infantile Spasms. It has a wide variety of prognoses and at this time we don’t feel we have enough info to hypothesize about hers. This is very serious and we will be beginning a treatment protocol for it immediately. It means that for now we are stopping her chemotherapy protocol.

The drug that we will be using to try to stop the seizures is Prednisone, a steroid. We have previously used this drug in her chemo protocol and it should provide an anti-leukemia effect at the same time as it hopefully stops the seizures. So she will not be as at risk of relapsing as if we just stopped giving her anything to fight leukemia. In fact, the dose of prednisone we are giving is higher than what we gave in induction (for you other cancer parents) so it should have a good anti-leukemia effect and make our lives really interesting. We will be at the hospital in Chapel Hill for a few more days until we think we are getting some control of the seizures. At this time, we are not sure if this new diagnosis is related to her leukemia or her chemotherapy, but it seems very unlikely that they are unrelated. This is not a common side effect of anything we have given her to treat her leukemia.

This is not the way I intended to share news of the end to Maddie’s chemo, but for right now we are just rolling with the punches. Please continue to pray for our amazing child.

Hug your children and thank God for their health.

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11 thoughts on “A new diagnosis

  1. Praise the Lord that you now have a better idea as to what is going on. Now, I suppose it’s time to start tweeking with her steroids to get the correct dose.

    When we learned that Carly had ALL, we were told about the protocol that she would be on. We were also told, that several years ago, the way they got kids into remission was through high doses of steroids. This was before they had chemo doses that were safe enough to give children.

    We will be praying that all improves very soon for little Maddie.

    Hugs from,
    Joany and Carly

  2. Hey there. Well….crap. The good thing is that Maddie was almost through her protocol for infant ALL. She got more chemo than most kids did in the past on other protocols. Plus, the prednisone will help too. But I’m sorry that the prednisone dose will be so high. I hope that her body gets used to it though. I’m glad the good folks at UNC were able to make a diagnosis and now its time to get Maddie better again.
    Much love…and much much strength to you guys,
    Sarah Bolenbaugh

  3. Liz I hope you remember talking to me about making the decision to go on to maintanance with Shelby insted of repeating delayed intencification after the BIG infection in her leg, you told me that I just couldn’t second guess. You were right and now I will tell you the same. It is in Gods hand and he will take care of Maddie. You are a great Mommy and Maddie is going to be GREAT. Shelby is sending her hugs and kisses. Lots of Love Gina And Shelby Price

  4. Hi–I came to your blog through another “net” friend, but wanted you to know about another blog I follow, about a family with a little girl who is battling leukemia, who was diagnosed with infantile spasms, who has Down syndrome, and who had a stroke in utero. Maybe they will have some encouragement they can offer.
    Here is the address: http://www.littlewonders-heather.blogspot.com/


  5. Liz,
    I am thankful to have heard your voice today. Maddie , you and Brandon are always in you prayers. Pleas ekiss the angel for us and know we are all pulling for you to have strength.
    Love the Beasley’s

  6. Liz, Brandon & Maddie –

    We’re thinking and praying for you every day!

    Carrie, Zack, Elizabeth & Mary Margaret

  7. Hi, I just found your blog from the Riggs’ family blog.
    My dear friend’s daughter Mia (age 2) has infantile spasm seizures. They tried many medications, but none of them worked, until the last one they tried which was a trial drug. Lisa is a wonderful woman who is like a second mother to me, and I’m sure you would find a great friend in her. Mia not only has ISS, but she also fought HSV-1 meningitis encephalitis and has some temporal lobe damage. So needless to say they’re no strangers to medications and hospitals, either. Her web address is http://myspace.com/lisamartin98
    Also, I’ll be sure to give her your link as well
    Hang in there,

  8. I was so glad to see you guys today, and give Maddie a big hug. She is so special. You guys hang in there, we are still praying.
    Gina Price

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