We’re still here……

I didn’t mean to let this much time pass between entries. But we have just been busy. So in order to try to catch y’all up, I’m going to try to be more concise. Sure.

First, Brandon and his unit are safely home. Our thoughts and prayers are with the Marines who were wounded and killed in action. Brandon got back to us on my birthday, May 17. We are doing well, enjoying our time together. We have traveled to the beach twice and to Charlotte. His post deployment leave is just about up and we are getting back to “normal life” for us. The really cool part is that the three of us actually live together in our own home. We essentially lived apart for 2 and a half years treating Maddie’s cancer in Charlotte followed by his deployment. So while much of our life is not normal, at least we get to live it together again.

Maddie is doing about the same. She is still on Lamictal, though we are currently reducing it a bit. We have seen some cognitive improvements since starting it and some seizure improvement. As we got to a higher dose, the cognitive improvements seemed to go away so we are trying to get back to a dose where she felt better and had more energy and attention.

We are not sure what the next step is as far as meds go yet. We are close to the point where her Neurologist will want to introduce a third anti-epileptic drug. I am not sure I’m comfortable with a cocktail like that and may want to get her off Keppra before starting anything else.

Right now she is not really walking or talking and she has seizures around the clock. So we are certainly not happy with the status quo.

On June 24, we will head to Wake Forest for her to get a MEG. This is a new type of scan that she has never had. We are hoping to find something that could be a cause for all these seizures. We certainly don’t like the idea of brain surgery, but at this point we are hoping for anything that will give us some hope that we can stop the seizures. She will have an MRI along with the MEG that day so it will be a long day with her under anesthesia for many hours. Please pray that this all goes well.

On a more positive note, we had Maddie’s oncology check up last Friday and her counts showed her to still be in remission from her leukemia. We only have these appointments every two months now, which is a welcome change.

Maddie started preschool at the Elementary school 1/2 mile from our house on base in April. She is in a self-contained class with just one other student right now. The school year has just ended and we have a short break before we start 3 weeks of summer school in July. For now, I go with her to school and act as her aide. It is the best way to ensure her safety with such frequent seizures. The amazing thing is that she is making progress. It is definitely slow, but it is going far better than I expected. We only had school for 90 minutes per day this last year, we will do two hours daily over the summer, and will do 2 hours 45 minutes daily starting in the fall. It sounds like very little but it is very hard work for our little girl. We are so proud of what she has been able to do so far.

Here are some pics from the last few weeks.

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15 thoughts on “We’re still here……

  1. Liz
    I keep up with the 3 of you some through your mom, but it was great to see your post – get an update and see some new photos. Maddie is still as adorable as she was the first time I saw her at Longview. The 3 of you look so happy in the photos — it is wonderful that you are all back together. It’s good to hear that Maddie is making some progress in school and that her leukemia is still in remission. I pray that June 24 will bring some answers to help Maddie with the seizures. As always, each of you are in my prayers.
    With Love, Loretta

  2. Hello – Liz, Maddie and Brandon

    I was thinking about all of you the other day and so happy to see a message. Great news that you are all safely back together again and have had a little time to adjust – I am sure it is a big adjustment to all be living together again given all that you have been through the last couple of years.

    So wonderful to hear that the leukemia is still in remission – but certainly the toal of the seizures remains – and I just hope and pray for Maddie and all of you that more relief and change in the seizures can be found. I admire how you continue to manage and deal with such a heavy load.

    Maddie is so beautiful – love the pictures.

    Bye for now, Connie – mom to: Sophie 5yrs old and nearly 2 yrs OT for ALL, and Jenny – 10 months old.

  3. I’m so glad your hubby is home and you’re all together! Maddie is such a gorgeous little girl! I can’t believe she still has to deal with seizures taking so much away. I hope and pray that something will work soon for her.

  4. Liz and Brandon and of course Maddie,
    Maddie you get prettier every time I see you. Brandon, Thank God you are home safe and sound. Liz my prayers for all of you always,

  5. Liz,
    Blessings to you and your sweet family! I am so happy you are together again! Maddie looks absolutely adorable–she continues to join me (in spirit) as I run with my team! Her latest trip was to Nashville in April. Next she’ll travel to San Francisco in October 🙂 I wish you all the best and hope your time together is wonderful!
    Lori
    Atlanta, GA

  6. How happy you all look. I am so delighted to hear that Brandon is back safely and that Maddie is still in remission. I pray for you all regularly and will continue to do so. I am especially happy that Maddie is in school. Blessings to you all.

  7. You are in my thoughts often and I was glad to see the update. It was wonderful to read that Brandon is back home safely. The pictures are absolutely gorgeous…you have such a beautiful family.

  8. I loooooved the picture of you and Maddie – wet and smiley.

    I think you should definitely enlarge and print that one! Or take them all and make a collage. Pictures don’t always capture everything…but you all looked very peaceful and content. It made my heart happy.

    I’ll be thinking of you through the MEG scan.

    Love to you…and your sweetie petitie!

    …danielle

  9. I’m glad he’s back. I’m glad you are all a family living together again. Makes me happy.

    I’m going to be hopeful about the MEG. I hear great things about it.

  10. To start – the pictures are so great. Looking in Maddie’s eyes you can see the bright wonder of life – they are so pretty and her hair just blowing in the wind. She is one beautiful child. I am so happy that the three of you are together and can share the joy she brings into the world. The pisture are so great – thank you for sharing them. Maddie in school – wow I cannot believe how time has gone by. Keep us posted and remember anything you need we are just around the bend. MK and Jeff

  11. Wonderful news that you are all together again. It looks like you made some great family memories on your beach trip. I will say a prayer for Maddie concerning the upcoming tests and I’ll be praying that you find the wonder drug to stop her seizures. I’m glad school has been a positive experience. I am facing the decision of school soon with my IS son and the thought always gets me worked up even though I have heard a lot of positive reports. Keeping Maddie in my prayers.

    Be well,
    Kay Gleason
    http://www.caringbridge.org/visit/matthewgleason

  12. Hey Liz!
    Sorry this is late. I just realized you updated.
    I’m glad you are all at home.
    Maddie looks as cute as ever.
    Let us know how the new scans went, and I hope that they were able to give some insight into little Maddie!

    Love to you,
    Sarah

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