Quick update

I am going to try to keep this short as I just don’t have the energy or the perspective to really go into too much detail about how our last two and a half weeks have gone. The ACTH keeps her from sleeping much, so everyone in our house (Mom, Lance, and I) is sleep deprived from trying to keep up with her.

We have been injecting ACTH for 19 days now. After the first week, we were seeing some dramatic improvements and I actually allowed myself to think this drug might be Maddie’s miracle. After 6 days with no clusters, they reappeared on their same old schedule (every 3 hours all day). We were devastated. We upped the dose to 150 units. This is a massive dose of steroids.

Around the same time the clusters came back, Maddie seemed to be in pain when urinating. So despite being on an antibiotic to prevent UTIs, she had contracted one again. We began to treat it, but when the more detailed results of the urine culture came back, our oncologist felt we should get a better sample by catheterizing her since there were so many different bacteria in her first sample. So off we went to the urologist’s office Friday afternoon. It was incredibly strange; Maddie barely reacted when she was catheterized. Normally, she screams, flails, and cries and is basically traumatized by it. So her lack of reaction made me think she was feeling worse than I had previously thought.

So when we arrived at the oncologist’s Friday afternoon at 4 to drop off the new urine specimen, I asked her oncologist if we could draw a blood culture just to be sure the bacteria in her urine had not already made it into her blood. He took a quick look at her, listened to my description of her being somewhat listless during the catheterization, and decided Maddie needed to be immediately admitted to the hospital for observation. So completely unprepared, with no bags or any of her meds we headed over to the 11th floor of Levines Childrens Hospital for a minimum two night stay until we were sure her blood cultures were negative.

Her oncologist knows us well, and was worried because of her very precipitous decline last time she was on steroids and became septic. He felt it was unlikely that she had a blood infection, but that it would be unwise to ignore possible warning signs. So it was better safe than sorry.

So we spent our weekend at the hospital. It was the only weekend this month Brandon has been able to visit, so we got to enjoy some quality family time, just not quite as expected.

The good news is her cultures remained negative, so we got to come home yesterday. Unfortunately, the extremely high dose of steroids has not made much of a dent in her seizures. It also made it quite difficult for us to keep her happy overnight in the hospital since she barely sleeps. We also really missed her port in the hospital. She was stuck twice in each hand, once in one arm, twice in one foot, and once in the other foot in order to get a working IV and enough blood for the tests they needed to run. That was not fun at all.

We have a busy week coming up. The house we are moving into on base in Camp Lejeune will be ready for us Wednesday. Movers will deliver all our stuff Thursday. So if Maddie is up to it, we will head down there Wednesday and try to help out a little. We are really excited, as we actually plan to try to move there and live with Brandon soon. We had hoped to get some seizure control first so that our life was a little more “normal”. But that was not to be…..and we want to spend as much time as we can together as a family before Brandon deploys in November. So things may get crazy for awhile, but we hope to try to make the most of the time we have left together. At this time, we are not quite ready to move to the care of another oncologist (we love Dr. McMahon and we know he really cares about Maddie and knows her better than a new doctor ever could), so we will be traveling quite a bit to try to keep watch that her leukemia is not returning. We will be sort of splitting time between Charlotte and Jacksonville for awhile.

Of course, all of our plans depend on how well Maddie tolerates traveling. And while she is still on the very immune compromising ACTH, she can’t be in public much and at any sign of a fever or sickness we will be quickly en route to Levine Children’s Hospital here in Charlotte.

It will take us a long time to wean her off this high of a dose of steroids. We hope to keep her healthy the rest of the way through it. We have not completely given up hope that it could end her seizures, though it seems a longshot at this point. It is possible that the UTI had something to do with the return of the clusters, but as the UTI goes away with the antibiotics, we would expect to see some major improvement. And while we are seeing some improvement, I would not call it major yet. So I am currently waiting on the phone call from her Neurologist to see what med we will introduce next. We are trying to remain hopeful.

Love to everyone,
Liz, Brandon, and Maddie

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16 thoughts on “Quick update

  1. Maddie and all of you are never far from our thoughts and prayers. Sending love, hugs, and prayers for Maddie and we all continue to hold out hope for something to help your beautiful daughter get seizure free.
    Love,
    Zanna and family

  2. Liz, we only live about 45min. from the front gate in Jacksonville. We will do any thing we can to help the three of you. Please call us if we can do anything. I mean anything. You are one tough young lady. Please let us help you. Tom & Susan Bailey 252-838-1179 or 252-269-2745

  3. we are here, too, and will do whatever it is you need….you can email me at dkfox76@aol.com or call 910-457- 5518…..

    thinking of you. always.

    p.s. it was great seeing brandon a few weeks ago..

  4. Bless you, Liz. I’ll pray for a safe trip to Jacksonville and hopefully some good quality family time. You all deserve it.
    Love, Susan

  5. Liz,

    We’ve got you all in our prayers and want you to remain as faithful as you can. It seems like there is always some fight, some storm that gets in the way, but know there is a sun shining, and a rainbow behind it all. It can seem so difficult to see yourself past this, but you will get there, and be amazed by how well you did.

    We look back and are in awe when we think of what we have endured, and it lets us know that we can do just about anything.

    Enjoy your family time and make the most of it, and as hard as it can be, try to “be where you are”..live in the moments, treasure the good ones, and you will get through this.

    God Bless,
    Jody

  6. You know where I stand on all of this stuff…and how sucky it all is. I just wish there was a way to really know what to use to attack the problem. That’s part of the ultimate frustration of it all…there is no ONE thing to do, it’s all these different things for different people.

    Limbo…it’s just the worst place to be.

    But on the plus side, THRILLED that you guys are out of the hospital and this particular missile was dodged.

    -Ken

  7. Hey Liz and Maddie, Just checking in to see how you are. I have been thinking about you and praying for you all. I hope things get better soon. Please know that my heart breaks that I can’t do more for you. I wish so badly that I could be near where you are to help you out (because I know how this is so stressful and how it hurts so badly sometimes to just “keep on going.”) Please remember that when you are on the bottom, the only way to go is up! Just do your best everyday!

    Love ya!
    Bec

  8. Oh, I wish there was something I could do to make it all easier for you all! I seriously don’t know how you keep it together with all that Maddie goes through, AND the prospect of your hubby being deployed. I’m in awe!

    Will be saying lots of prayers for Maddie tonight!

  9. http://www.jaymun.com/medical/aml-treatment-congenital-relapse.shtml

    OK Don’t think I am some www freak commenter quack LOL-

    This Christian family has had a lot of good success for their 2 year old son Jaymun, with prayer and herbs. ( also chemo) Check out his blog if you have time. At the very least you will see how some of his herbs help with side effects of chemo.

    Praying for you from Lynchburg VA
    Came here by way of Safe Haven blog

    God bless
    Karen

  10. ACTH is definitely a miracle drug. My daughter has IS. She was put on Cosyntropin, which is the synthetic and cheaper form of ACTH. It reduced her spasms but did not stop them. She was on it for 2 months. She was then finally put on ACTH. She stopped the spasms the first day she got the medicine. She has been seizure free ever since. She is 2 now. Good luck with your journey. I wish you the best.

  11. Oh, I’m just so sorry!! I really wish there was one magic *fix* for all of these kids. the limbo really does stink. Trust me, we’ve been in limbo for 2.5 years now. Give your precious little girl a hug from us. I haven’t forgotten about getting you the OT info for Jacksonville. I’ve got to get her number from a friend. Try to rest when you can. Who is your neuro in Charlotte? Take care.

  12. I’ve been to your blog more than once over the last week or so from the IS forum, and tonight I saw a prayer request for Maddie on the safe haven blog (one of the gals who posts there is in my extended family), so I knew I needed to reach out.

    My daughter was diagnosed with IS last month, and she is on ACTH too. I’m sorry that it has not been your miracle drug. I’m not sure if it has been for us, but Ella’s spasms have stopped for the time being.

    I know it’s hard to be hopeful when so much remains unknown. I am praying for your girl and your whole family.

  13. oh, and I just looked back on Ella’s “My IS Child” thread and realized you reached out to me first. Thanks for that :).

  14. Liz… just wanted to let you know.. we still thinking of you… we haven’t seen you about much on the infant leukemia board.. Hoping this is because maddie is well enough and that you are moving home…

    Sending many good thoughts and prayers your way..
    God bless you all
    love and hugs
    Jane and Freja

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