Serenity now please….

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

 

So…..things here have not changed much. Maddie continues to have the seizure-like episodes around the clock every day. It is particularly difficult to have a “normal” life because she has to sleep off each episode. So she naps after each one, with most of her daily sleep coming during the day. Nights have very little sleep, but usually have less episodes, so I enjoy hanging out with her even in the wee hours of the morning. It is very hard to imagine that we will have to live like this indefinitely.

For that reason, I continue to hope that what is going on is actually some type of seizure activity. Most seizures can be treated with medication, and that is a fate that is much easier to accept than that my beautiful baby will have abnormal brain activity that we can do nothing about forever.

All of the tests we ran to look for other causes for her abnormal brain activity came back negative. So we got our “diagnosis of exclusion”, that her brain is simply damaged from all of the chemo. No one has been able to tell us how exactly it is damaged and if it will resolve itself. So we are seeking a second opinion and will have an appointment with a pediatric neurologist at UNC next Wednesday. We are hoping that they can review the tests we have already run on her (rather than having to torture her with EEG leads being put all over her head again) and that they come up with a different answer than the doctor here.

There are alot of characteristics of her episodes that are very seizure-like, so we are truly hoping that it turns out to be that. We are still giving her seizure medicine, and though it has seemed to change some aspects of her episodes, it has not stopped them at all. But there are many many other seizure medicines we can try and we can continue to up the dose as well. We need a doctor to believe that she is having seizures before trying other drugs, especially since many of them have interactions with the chemo drugs that are of utmost importance to her.

The good news is that she is still in remission and she has periods of time during the day (or night) that she feels good. We are holding out hope that we will find some way to treat this “abnormal brain activity.” Please continue to pray for our sweet and amazing little girl. I will try to add pictures later today because she actually has some hair now and looks absolutely adorable.

Love to everyone,

Liz, Brandon, and Maddie

The saga continues…

I wish I could say we now know exactly what is going on and have a plan for how to treat it, but that is not the case.

After meeting with the neurologist Thursday, given that Maddie had been on seizure meds for almost a week and seemed to be having more episodes than before taking the medication, it was suggested that if they continued to last over 20 minutes per episode that we go inpatient and do a 24 hour videotaped EEG to see what is really going on. So after her first “seizure” following our appointment Thursday, we had to head into the hospital as it lasted 30 minutes. After truly torturing my baby to attach electrodes all over her head with airplane glue, we began the long period of observation. She had many episodes while hooked up so we felt sure they would be able to clearly see the seizures this time and identify their type.

At 9 am yesterday morning, they completely shocked us by informing us that her brain activity, while highly abnormal and disorganized, did not show evidence of seizure activity. At that point, they asked us to make her begin fasting so that she could have lumbar puncture procedure later in the day to check for viral or bacterial infections on the brain or in her spinal fluid, and to rule out Central Nervous System leukemia relapse. Of course we were scared considerably by the possibility of relapse, but what turns out to be more frightening is that our doctors wanted to rule those things out but did not in fact suspect those things as much as they suspect some type of brain damage from the chemotherapy that is causing her brain to function improperly. While having seizures was not something that thrilled us, at least seizures were treatable, and it is unclear if another type of damage done to the brain can be reversed or treated in any way. 

So at 7 pm last night Maddie had a lumbar puncture with a bone marrow aspirate (just to make sure she is not relapsing there either). We do not know the results of all of the tests they are running, but we have found out that her cerebral spinal fluid was clear, which would indicate that she is not relapsing there and that there is not a raging infection there either. While that is comforting, it gets us one step closer to where they may tell us that they have no idea why Maddie’s brain isn’t functioning correctly and that she may have some type of severe brain damage. If that is the case, there is  nothing we can do except wait and watch and hope that it repairs itself and stops deteriorating.

While relapse has always been our greatest fear because very few kids with Maddie’s type of leukemia survive relapse, we now have a very real new fear that she may have a very rare, but possibly irreversible side effect of her chemotherapy. When her oncologist said that he would rather see a relapse than a certain type of brain damage, we knew it must be very serious. And to clarify, the damage that they would be most afraid of is not necessarily something we can test for. By excluding all of the other possible reasons for her brain malfunctiong, they will conclude that it must be that, and then wait to see if she is able to heal herself or not.

Please pray for our Maddie. 

Love to everyone,

Liz, Brandon, and Maddie

End of a long week…

We received the call from Maddie’s doctor tonight that the EEG she had yesterday was abnormal and showed seizure activity. So she has already had her first dose of seizure medication and we will hopefully get to see a neurologist next week to find out what all this means. We knew some of the chemo we have been giving her (to try to save her life) causes brain damage in somewhere between 5-20% of kids.  We don’t know yet whether the damage we have done is permanent or if it will heal itself in time once we stop giving her the poisonous chemicals that caused it.

This has been the worst week since her diagnosis for me(Liz). She has had an average of 3-4 episodes per day and then has slept for hours after each one this week. She has had very little time where she has felt good each day and it is very hard to watch. With the fasting for anesthesia for the MRI, the night of sleep deprivation for the EEG, and the other sleep disturbances she has had this week because of sleeping off the seizures all day long, we are just plain exhausted here. So I wish my child was not having seizures, but I am relieved to know that medication may help and that we may be able to see a normal happy Maddie again sometime soon.

Brandon just arrived home for the weekend and they are playing happily at almost midnight right now. To see her play and be happy is well worth missing bedtime….

Please keep her in your prayers.

Love to everyone,

Liz, Brandon, and Maddie

Update

We went in for Maddie’s MRI today…it turned out to be a very long and restless night, and longer morning with the trip to the clinic and being put under for her MRI procedure.   We thought her episodes had subsided, but over the last two days they have continued to show up, especially when she is really tired.  We still do not know what is causing them to occur… as mentioned in the last post, one of her chemo drugs she has injected into her spinal fluid is known to cause brain damage and seizures, but we are hoping this is not a precursor or symptom of that.   She has her EEG test on Thursday and we will be doing forced sleep deprivation tomorrow night.  This is going to be extrememly strenuous on her, so please keep her in your thoughts and prayers. Thank you!

Love,

Liz, Brandon, and Maddie

It’s a New Year

Merry Christmas and Happy New Year!

I know it has been awhile since my last update. We have just been really busy here, enjoying holidays together as a family and dealing with some of the side effects of Maddie’s 14+ months of chemo.

Maddie seems to be feeling well. Various members of our family seem to be getting colds and Maddie may or may not be developing one too. On Friday, we spent most of the day (11 am- 8pm) at the clinic and the hospital. Maddie’s hemoglobin was low again (sigh…) and she needed a blood transfusion. That takes four hours, but while we were waiting for the transfusion to start she developed a little fever so we had to run blood cultures and a urine culture. Her ANC was high enough that she was not immunocompromised, so they let us out of there despite the temperature, which had disappeared by the time we were done receiving blood. The temp could have been caused by a cold virus, and we are still waiting to hear if anything grows on either her blood or urine cultures.

Last week was also Maddie’s week on steroids, and because we need some more excitement in our lives, she began to have some episodes which were “possible seizure activity” starting Monday evening. She never actually had a seizure, but at times she would become really fatigued quickly, become agitated, and then her eyes would roll back into her head repeatedly as she nursed to sleep. So that was really scary to see. We discussed by phone with the doctors, and then went in Wednesday to have her checked out. Since episodes started on steroids (which are known to cause all kinds of weird behavior and psychosis) and because the frequency of the episodes increased the longer she had been on steroids, we stopped the steroids early to see if the episodes would stop. They have stopped for the most part though she did have a brief one again last night. So we are hopeful they are caused by the steroids, but to be certain, Maddie will have another MRI of her brain (which requires anesthesia) on Tuesday and a sleep deprived EEG (this is going to be miserable for both of us) on Thursday. One of the chemotherapy drugs that we inject into her spinal fluid is known to cause brain damage and seizures, so we really hope that this is not what we are seeing.

Since our last update, we did get the news that Maddie does not have Parvovirus in her marrow, so that means that the dropping hemoglobin is not due to Parvo. That probably means that she is sensitive to one of the medicines that she takes. It could be an antibiotic, but that is unlikely since we have only recently started a new one. So more likely, it is caused by one of her chemotherapy drugs. The drugs that she is on now are the same ones she will be on for the rest of her treatment, so it is problematic if one of them is keeping her from making hemoglobin. But as our oncologist has pointed out, it is far easier to deal with the hemoglobin dropping than it is to deal with a recurrence in her leukemia. So for now, we push on with chemo and we will try to figure out what is causing the drops in hemoglobin only if it does not increase her likelihood of relapse.

Despite all that is still up in the air for miss Maddie, we are still so pleased to start the New Year. We look forward to having a great year in 2009. While looking back at last year is scary sometimes, the most important thing is that she was in remission all year long. We hope and pray that we can say the same thing at the beginning of 2010.

We still look forward with excitement to a time when we can move up to live with Brandon in Quantico. With all that is going on right now, we are not there yet.  Right now it looks like Brandon will be moving back to Camp Lejeune in eastern NC from Quantico in June 2009, so our window to live with him where there is a local COG Children’s Hospital is growing shorter all the time. At that time we will still have 4 more months of weekly chemo and then at least another year of monthly visits. We are trying to make the best decision we can to ensure that Maddie gets the best care possible, both from her doctors and her parents.

Love to everyone,

Liz, Brandon, and Maddie