Maddie went in around 9 this morning for her BMA and LP procedures to determine if she had relapsed. After being added to the OR schedule last night we were fortunate to get into pre-op quickly and into the procedure room by 10. The preliminary results of her bone marrow and spinal fluid showed no explicit signs of relapse under the microscope, but it will be 24-48 hours before the flow cytometry results are back from the laboratory. The initial impressions are positive, but we have to wait for the lab testing to be certain.
Rather than sitting around in Charlotte waiting and stressing, we decided to head down to Wilmington this evening and wait it out at the beach. Her seizures have continued to be strong, continuous, and effect her ability to walk without falling. Although that has been our primary focus the last few months, this recent blood test has reminded us how many serious fights Maddie has going on right now. Please keep her in your prayers.
Liz, Maddie, & Brandon
Sometimes we honestly just feel like all of this is just some unbelievably cruel joke. This afternoon we were due to leave for the beach, to relax for a few days at Figure 8 at my uncle’s house (thanks so much Haywood!), and to try to find a place to live in Jacksonville. It was our first real attempt to get back to a more normal life.
Of course, before leaving we had to check Maddie’s counts. This was our first time getting her blood via a finger stick after removing her port Friday and it was not great. But we left the clinic to pack the car and to wait to get her counts faxed to us. So when we finally heard the counts, the doctor let us know that some of the cells he saw on the slide were “possible blasts”. He said there were definitely some abnormally formed lymphocytes and that it was hard to tell, some of them may be blasts. Blasts are what we would see if she was relapsing. There are times where we have seen blasts because she was experiencing a strong recovery, but being that we have just restarted chemo, she should be doing the opposite of recovering.
So this is potentially very bad news. We will now be doing a bone marrow aspirate tomorrow and hope to have a preliminary result by late in the day.
Please pray that the leukemia is not back in our precious child’s body.
Love to everyone,
Liz, Brandon, and Maddie
It has been awhile since I posted many photos of Maddie, but I finally got around to doing it. You can check them out by clicking on the link in the right hand column under Photos (New Years 08 – April 09) or clicking here.
As much as we love the people on the 11th floor at Levines, we are incredibly glad to share the news that we are at home. It doesn’t mean that Miss Maddie is quite back to normal yet, but we just felt she needed to get out of there. She seems much happier and has been much more herself since we got to walk out of the hospital this morning at 8 am. We have already had a visit from the home health nurse to show me how to administer her IV antibiotics via her port here at home. She does still have her port accessed which means we cannot play quite as freely as we can when she is not having to receive IV meds. But we are thrilled to be home, and she really seems to be too. Two weeks is a long time to be inpatient.
We will restart seizure meds today too. The seizures are back but are milder than they have been in the past. We are not sure, but it seems like she may be having some different seizure activity than in the past. Her MRI was basically unchanged, so it does not appear that there was any new damage done by the septic shock and its treatment. So hopefully we will have some success with the seizure medication, and if we don’t we will just try another one. We will find a way to get some control over the seizures!
Right now we are just ecstatic to be home and that Maddie seems to be improving a little each day. We had an amazing view of the storm that came through Charlotte last night from our wall of windows on the 11th floor of LCH. Today is beautiful and we have already taken Maddie for a jog in her stroller. We are so thankful to have our precious girl back at home and getting better. Our lives have not been “normal” in a long time, and we don’t know how normal we can ever be again after going through all if this. But that lack of normalcy has made it possible (and maybe forced us) to learn to embrace the small wonders in life. The dogwoods look absolutely beautiful right now. And this recent crisis has meant I got to spend the last two weeks with my husband….what a concept! I wish it had been under better circumstances, but you have to look for the positives sometimes.
Happy Easter everyone!
Liz, Brandon, and Maddie, our miracle
I just wanted to quickly post that we are still in the hospital. She has started to talk to us a bit more, though it is clear she goes back into her shell whenever we do anything “medical” to her. She is by no means back to “normal” for her, but we are just ready to get out of here. Her Infantile Spasms have started to come back, and she is not currently on any seizure medication, so we expect to start something for them soon.
We are currently waiting to hear the results of her brain MRI and her LP yesterday. We also hope to get an idea if when we might break out if here as well.
Thanks for continuing to pray for our sweet Maddie. Have a happy Easter, too.
Liz, Brandon, and Maddie
At our last update, we felt things were improving, though slowly. Unfortunately, since Thursday evening Maddie has gotten less responsive to us and is basically sleeping or nursing all day. We have begun to see her seizures coming back (they stopped when she first got the fever that led us into the hospital). They are different than before though, and sometimes it appears that she is “absent” while she is awake, so that may indicate the development of a new seizure type. On Thursday, she was talking, played a little, and even ate a handful of cheerios. Since that evening, she has barely interacted with us at all.
Needless to say we are devastated. She just survived an incredibly life threatening infection, and now the seizures seem to be taking her from us. We have had an EEG, which did not fully explain what we are seeing. We will probably have another MRI of the brain early this week to see if there is any new damage. We are actually taking her off her seizure meds (since it does not seem to be working anyway) in hopes that we can see what is really going on right now.
Please keep her in your prayers that we begin to get some interaction with her and that the seizures do not get too bad.
Liz, Brandon, and Maddie
I am happy to report that we were moved out of the PICU yesterday and back up to our old home on the 11th floor! It is great to see familiar faces who know how amazing our Maddie is. I can’t even describe how great the care was at the Levine Children’s Hospital PICU was for us. We went down there Sunday morning early and had incredibly professional and caring nurses and doctors every minute through when they let us go yesterday. I hope never to go back (except for a visit), but I cannot imagine a more competent staff and excellent facility to save a child’s life. We feel incredibly blessed to still have our princess with us.
In preparation to be released yesterday to the 11th floor, Maddie had three lines removed, a central line, an ART line, and a peripheral IV. She seemed to relax after their removal and has basically just been sleeping ever since. Her breathing is still a little fast and shallow, so we hope that improves soon. She also continues to have low grade fevers, and she still feels pretty awful. We hope to see continued improvement each day, and that this will all seem like just a bad dream soon.
I don’t think I have ever explained how this all occurred, so I will try to give a brief explanation. Maddie has had recurring UTIs for last year. We have not yet found the cause of them, but in her case a UTI became a kidney infection which then became an infection of her blood. She has been on steroids for over 40 days, and they may have masked her symptoms a bit. So we suspected a UTI when she was acting like she was in pain Saturday afternoon. By the evening, she was developing a fever and we rushed straight in to the hospital. Our oncologist started IV antibiotics immediately to treat the UTI. By 6 am Sunday she was in septic shock and they moved us to the PICU. We could not get her blood pressure under control and she was starting to have trouble breathing on her own. They opted to intubate before she crashed feeling that a crash was imminent. We are so thankful that we had a positive outcome as it was incredibly uncertain.
Maddie is definitely improved from then but we still have a long way to go. Yesterday, we received the result that the previous day’s blood culture was still positive for the bacteria that caused the sepsis, so we are praying that the newer cultures remain negative. She has just begun to eat again, but she basically breastfeeds and sleeps around the clock. We are hoping that we begin to see some improvement in her energy level soon. Thanks so much for all of the prayers, but please do not stop just yet.
Love and thanks to everyone,
Liz, Brandon, and the incredibly amazing Maddie