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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I wanted to share a sneak peek of some photos of Maddie that were taken last week. Click here and scroll down a little to see the pictures of Miss Maddie-boo. Angela Shea, an incredibly nice person and fabulous photographer, contacted me a few months ago to say that she would like to give us the “gift of photography.” She takes time out of her busy schedule to donate her time and talent to take photos for people with children who are going through alot. Below the pics of Maddie on her blog are those of others to whom she has given this same gift, a few of them from our oncology clinic. We are so appreciative of her time and cannot wait to see the rest of the pictures.

I had put off scheduling it because there never seemed to be a perfect time. I was hoping to get control of the seizures, let Maddie lose her steroid weight, grow her hair……I finally realized that the perfect time may never come and my beautiful child is 2 and a half years old and I have never had professional pictures taken of her (what kind of mother am I?) So, knowing she would probably feel like poo for the next few months because of the steroids (and that she would balloon up too) we decided we were ready. And Angela was so sweet to work with our schedule.

I had been waiting to share them because I was trying to keep them a surprise for my husband. I was saving it for Father’s Day. But I can’t keep things from him very long, and so when we were both feeling a little down after starting the ACTH and not seeing any results, I went ahead and showed him to try to brighten his day.

One last thing, for those of you that pray, please pray that the ACTH is working for Maddie. She is not seizure free yet, but we have seen some improvement in the last two days. I will be increasing her dose tomorrow and am desperately hoping that it will be just what she needs to knock these horrible seizures out so that she can begin to develop again.

Love to everyone,
Liz, Brandon, and Maddie

Moving on to Plan B

 It has been a little while since I updated and things have improved a teeny bit here. The Keppra that we started on at the beach has reduced the length and intensity of the clusters of spasms. Unfortunately, she still has the clusters 6-8 times a day and the Keppra does not seem to help the single spasms that throw her to the floor at all. At this point, in order to say a medicine is truly working for her, we have to stop the seizures altogether. So we are moving onto our plan B from the last Neurologist visit. The dreaded ACTH.

It arrived yesterday on ice. So now we have close to $100k in the fridge. I liked the invoice which said “patient responsibility $9.00, insurance pays $97,722.30” Holy cow, that is outrageous. At that price (and given that I have to stick a huge needle into her thigh muscle twice a day) it better work!

She just had her first injection here at her oncology clinic in Charlotte, so tonight will be my first time giving it. Like the steroids she has been on before, this should increase her appetite and make her very irritable. It will also likely make it difficult for her to sleep. It also suppresses her immune system so we will be basically housebound like when she was on heavy chemo. Last time she was on steroids for a long time, she ended up in the PICU with septic shock, so we will be incredibly vigilant this time.

Please pray for this to work for her. She has now been having seizure activity for 6 months and we desperately need to put a stop to it so she can begin developing again instead of regressing.

I added a few new pictures from a few days ago too. Click on the Photos tab at the top.

Love to everyone,
Liz, Brandon, and Maddie