Busy here

It has been awhile since I updated and that has been because there has just not been any time. Maddie continues to have seizures every day.

I did not know much about Infantile Spasms (IS) when she was diagnosed and so I did not share much about it in the last post. We still are not completely sure of the cause, though we suspect chemo. If we knew the cause, it would give us a little bit of guidance as to how to treat it. No matter the cause, Maddie is a very atypical case of IS because it showed up much later than in most kids. That makes it even harder to know the best course of action to treat it. She is such a strange case that our neurologists are publishing her case, because they feel she is the first they have ever seen. Not very encouraging…..

I will try to give a little more info on IS and what it means for us. The reason Maddie’s seizures are characterized as IS is that the spasms themselves look exactly like typical “Salaam spasms” and her EEG shows an abnormal brain wave pattern that is almost hypsarrhythmia. Her development has also stopped since these seizures started, and that is one of the identifying factors for IS. IS is considered one of the “catastrophic” epilepsies because the seizures associated with it sometimes do not respond to treatment. Kids with IS often develop more types of seizures, even if the IS seizures can be stopped, and they are very likely to have developmental delays, and sometimes severe mental retardation.

As I have said before, Maddie is a very unusual case and we hope and pray that we can stop her seizures and that she will begin to develop again. At this time, we would not say she has regressed significantly since the seizures started, but rather that her development has stopped.

After the Infantile Spasms diagnosis, we had one clear first choice for treatment which gets rid of the seizures (at least temporarily) in almost 70% of patients. Unfortunately, Maddie did not get seizure free in response to steroids. And she has been on a very high dose which has made her feel absolutely horrible ever since we started them on Feb 19th. She does not sleep at night, but we sometimes get 4 hours from 5 am til 9 am. Otherwise, she naps from time to time and feels awful when she is awake. This has been pure torture to watch. It would have been worth it if it got rid of the seizures, but it did not. Because of how high the dose is, we have to wean them slowly, and while we have started, we won’t be done for 14 more days. For you other cancer parents out there, her dose was 3 times the induction dose of steroids for the first 2 weeks. It has truly been insane.

In addition to feeling anxious, irritable, and unable to sleep, she also has major muscle weakness from the steroids and it makes walking difficult for her. Steroids incease appetite hugely, and she has already gained four pounds since starting them 3 weeks ago. That is more than she has gained in the last 16 months of chemo, and it definitely is excessive. The skin on her little face and tummy looks stretched taut. I am counting the days until we can stop the terrible steroids.

So the next drug of choice for IS is called Vigabatrin and it is not yet approved by the FDA because of a very bad side effect. There is a risk of permanent vision damage with this drug. We plan to start this drug tonight, as it just arrived by mail this afternoon. The FDA plans to approve it later this year because the possible benefit (stopping seizures which cause brain damage) outweighs the risk of vision loss. Giving Maddie this drug is not a decision we have made lightly. It is clear to us that the toxicity of chemotherapy drugs we gave her to kill leukemia has played a role in causing these seizures. We know all too well the risk of side effects of medicines. But we cannot watch our baby suffer with these seizures if there is a cure out there. The seizures have taken our lively, energetic, curious child away from us and we want her back.

In other news, we have decided not to resume chemo when she is done with the steroids because we feel there is no evidence yet that the extra 8 months of maintenance chemo improves longterm survival of her type of leukemia. We also hope that giving her immune system a chance to heal may improve her chances in beating these seizures. Unfortunately, letting her immune system heal means giving the leukemia a more “fertile” environment to reappear if it is still lingering in her somewhere. So we ask for your prayers again that she remains in remission as we enter the scary and uncertain world without chemotherapy. It will take her immune system a long time to get back to normal, so we are not going to be out and about anytime soon, especially as the seizures have us basically housebound except for doctor visits.

On that note, I want to especially thank my mom and Lance for keeping us fed and picking up all our necessities, like prescriptions and diapers. They also help out a ton with Maddie during our frequent sleepless nights and they never complain that they can hear her screaming like a banshee all night long either. They truly had no idea what they were getting into letting us live here, and they have truly been saints.

I also want to thank my fabulous husband for eight wonderful years of marriage. I could noy imagine my life without you, honey! Things have not always gone as planned but we are truly in this as together as we could possibly be. Despite living 350 miles away, he is here every weekend, and has been for 16 months. He basically lives in his car and gets no sleep when he is here for two nights before turning around to head back for another week of work.

At this point, we will not be moving to Quantico because Brandon now has orders to move back to Camp Lejeune in Jacksonville, NC this May. We hope to visit him up in Quantico soon as we are no longer as tied to the Oncology clinic for blood draws all the time. We also plan to try to move to Jacksonville with him in May or June. We hope to move our Oncology follow-up care to Chapel Hill now that Maddie’s neurologist is at UNC. That is only a little more than two hours from Jacksonville. We would do just about anything to get to live together again as long as it does not compromise Maddie’s care. It looks like Brandon will most likely deploy again outside the US for awhile starting in October 2009. He will also have quite a bit of away-from-home training to prepare for the deployment, so we need to take advantage of the little quality family time left before he has to leave.

Thanks also to those of you who remembered our anniversary and sent us cards and gifts. We have truly been blessed with such a thoughtful family and feel so lucky for it.

From here, we hope to see positive results (no more seizures) when we start the new medicine today. We will travel to Chapel Hill next Tuesday for a visit with her Neurologist and to have a lumbar puncture procedure under anesthesia to see if we can shed more light on what might have caused Maddie’s Infantile Spasms.

If you made it this far, thanks so much for your concern. We cannot tell you how much we appreciate everyone’s support on this long journey. Those of you who know me know how controlling I am. I am a planner, and things must go according to my plan. When cancer found us, I was able to adjust my plans and make beating cancer my goal for the next two years. IS is a whole new animal for me: no clear prognosis, no endpoint to treatment. It has taken me a little bit to wrap my head around it. It is much harder for me to face the challenge head on when we don’t quite know what we are facing or if it will ever end. What I have come to terms with is that I have never had more determination to do the very best I can to advocate for and take care of my extremely precious daughter.

Love to everyone,
Liz, Brandon, and Maddie

Advertisements
This entry was posted in 1. Bookmark the permalink.

28 thoughts on “Busy here

  1. Liz,
    I pray for Maddie, You and Brandon often. Maddie is so blessed to have such wonderful parents. Keep the faith and know we haven’t forgotten about you.
    Luv U,
    Cherri

  2. Maddie continues to stay in my prayers. She is such a fighter. Liz, I am so sorry that you have been faced with the decisions that sit in front of you. You are a WONDERFUL mama to your dear girl. The love, advocacy, and care is evident to all and beautiful.

    Praying that the seizures stop in their tracks AND the leukemia NEVER returns…and her eyesight is protected too.

  3. Liz & Barndon,

    First, happy anniversary! I am so sorry to hear of Maddies new challenge. It seems so unfair having already been through so much. Maddie has been very blessed with amazing parents and I know that you will come through this! As always you are in our prayers!
    God Bless, Marcy

  4. Hi Liz and Brandon,

    I just wanted to leave you a note to let you know that we will continue to keep you and your family in our thoughts.
    -Sherri

  5. Not a day goes by without us thinking of lil’ Maddie and your family. She is so blessed to have such a wonderful, strong, loving family and the most amazing Mom and Dad! You are in our prayers always!

  6. Liz, Brandon and Maddie,

    We are so sorry to hear about the IS. Maddie is in all of our prayers every day. Even Lucy says “God bless Maddie Gorman” every night. We are sending our love and hugs and prayers and faith in God your way.

    Love, The Bowles

  7. I truly don’t know how you stay as strong as you do and am in complete disbelief of the incredible hurdles you have been up against. I continue to pray for precious Maddie and for all of you taking care of her. She is truly a blessed little girl. I can’t wait for the day that this is all behind you and she is happy and healthy. Please let us know if you need anything at all. Cindy, Jesse, and the boys

  8. Maddie is always in our prayers. We are all fighting for her.

    Thank you for posting information. We check daily.
    Brandon and you are amazing parents.

  9. Oh Liz,
    Your strength and patience continues to amaze me. You really are an inspiration. Find your strength in Maddie. She’s gone through so much but just keeps on going. God bless you, Brandon, and your parents. Hang in there. I know you don’t see an end in sight, but at least you can look forward to the steroids being over…and that’s going to be a nice ending!

    We just got over steroids week. I can’t imagine going through it at 3 times the dose for over a month. Hugs to you.
    Praying and hoping that this new drug does the trick!

  10. Liz,

    Brandon keeps me updated on Maddie’s condition daily. I hope and pray that the new drug will work it’s magic. I want you to know that Stephanie and I pray for her daily, and our kids can’t wait to meet her. Hope to see the two of you soon.

  11. Liz,
    Wow, I just read your recent update and I am so sorry about IS and the steroids on top of everything else you all have already faced. Your strength is amazing and Maddie is a lucky little girl to have such a great, strong Mommy. I will pray for Maddie that the new drug stops the IS and does not affect her vision, as well as pray that the Leukemia stays gone! Happy anniversary too 🙂

  12. Dear Liz, Brandon and precious Maddie,
    We send tons of prayers your way!! Prayers that this new drug works with no side effects, prayers that these next 14 days go quickly for all of you (Sarah has told me how awful the induction steroids are let alone 3 times that), prayers that God continues to give you the strength and courage that you shown thus far, and mostly prayers that one day precious Maddie will get to live the normal life of a typical little girl! Oh, I can’t forget the prayers for your mother and Lance…how blessed y’all are to have one another!!
    Warmly, The Cookes from Charlotte

  13. So many things in this world seem important, but really aren’t. It’s the people in our lives that are most precious. Our prayers are with Maddie and all of you!

  14. Liz,
    Just keep your faith. I know this must be so overwhelming and in so many ways I can relate, but on differant things. We are praying everyday, and we love Maddie very much. If you need anything please email me at shelbyraeprice@hotmail.com
    All my Love and Prayers,
    Gina Price

  15. Liz, Brandon & Maddie,
    Please know we are thinking of you and praying that Maddie will be well again soon.
    Hugs, Lea

  16. Oh my gosh Liz – You guys have so much going on with Maddie it makes my head spin.

    I will pray for her continued remission and for the IS to stop and for you to have some lovely quality time together before your husband is posted somewhere away from you both.

    Sue (ALL list mom)

  17. We constantly talk about the amazing strength of you, Maddie and Brandon. You are never far from our thoughts and prayers. Know that your advocacy and determination can and will make all the difference for Maddie. You are an amazing woman! Please let us know if we can help with anything at all.

    love, The Butlers

  18. I am grasping for words of comfort, love and hope …. I wish I was profound enough a writer to let you know how my heart is breaking for you and your absolutely precious daughter. Please feel the love being sent your way…. How blessed Maddie is to have you as her mother, caretaker and advocate. You, I know, are finding strength you never knew you had. I wish you never had to. From one USMC family to another, from one Cancer family to another, from one loving family to another, we are here for you whenever you need!
    Love,
    Kathy, Tom, Thomas, Greg and Julia

  19. Liz,
    I am so sorry to hear Maddie is presented with yet another challenge. I was completely overwhelmed with emotion after reading your update. Your words are a message of courage, strength and faith. Hold on to that and continue to believe all things are possible. My prayers are with you all and especially that the new medication will be the answer to her seizures. If there is anything I can do to help please don’t hesitate to call me.
    Love, Mary Anne and Walter

  20. Hey Liz and Brandon,
    I really have been at a loss for words since reading your latest update earlier this morning. I haven’t seen your Mom or Dad in quite a while to be able see how Maddie was doing. I am just so sorry that she continues to suffer from more problems. My heart goes out to you….I will pray for all of you. I hate that such a precious little one has to endure all of this. You are amazing in the way you have dealt with all of these trials, Liz. Much love, Susan

  21. sam & i think of you all often and pray for your strength, health, and well-being. our hearts go out to you all. we will pray that this new medicine works as it should, and for her continued remission.

    if there is anything that we can do, please let us know (especially after you get back down here to jacksonville-moving, unpacking, or running errands-you just name it, and we will do it to the best of our ability).

    hugs, postive energy, and good faith,
    danielle & sam

  22. sam & i think of you often, and pray for the health, strength, and well being of you all. our hearts go out to you. we will continue to pray for beautiful maddie’s continued remission, and that the medications do what they should.

    if there is anything that we can do, please let us know. (especially after you get back down to jacksonville-if you need help unpacking, running errands, anything-just name it, and we will do it to the best of our ability).

    hugs, postive energy, and continued good faith,
    danielle & sam

  23. Liz,
    You are incredibly strong and clearly Maddie inherited that trait from you! I am sorry to hear Maddie has developed a seizure condition, but I pray she will overcome it very fast.

    I pray for you all and may you soon be blessed with a happy and healthy little girl!

    My prayers are with you all,
    Margaret

  24. Dear Liz & Brandon-

    You and Maddie are in my thoughts. She is so very lucky to have such strong, determined, well informed, and inspiring parents. You all are an example to us all.

    Prayers for a recovery soon,
    Giordana

  25. Liz,
    I’ve been thinking about you a lot lately…as we walk the neighborhood and see your old house… Now I know why. I am so sorry to hear of yet another hurdle in your lives for sweet Maddie. We will keep praying for her .(Tori remembers to add “Baby Maddie” to her prayers each night.) May God bring you strength & peace during this journey.

    Hugs to you guys,
    jana & gang

  26. Praying for Maddie so very hard.
    I know the heartbreak in those terribly tough decisions. God can protect her immune system through steroids – and help build it back up to keep away the leukemia afterwards.

    As far as side-effects – God can turn poison into food. “Father – please keep Maddies eyes safe through this treatment.”

  27. Brandon, Liz,and Maddie:

    Erin and I think of you and Maddie often, especially with Brandon temporarily being gone–good thing is he’ll be home soon.

    We all have things to be grateful for in this life…Maddie is certainly one of them.

    You are in our Prayers,

    Chris & Erin Garnett

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s