Cousin Stella Update

Sometimes, my heart is filled with such heaviness that I can hardly be distracted by anything else. I want life to be fair and sane and predictable, and for as often as it has proven not to be, I still hold out hope for the next time. I want there to be a limit to the suffering any one person must endure, yet I have yet to be witness to it. I think that's what makes Jesus so appealing to me. He never promised this life would be easy; in fact he said quite the opposite: "In this world, you will have trouble." I would have a hard time putting my faith in a god who says otherwise because, often, everything is NOT okay, and refusing to acknowledge how difficult this life can be is intellectually dishonest and leaves people feeling tricked.

That being said, Stella, our 2 year old cousin, is no doubt in a life or death battle against this apparently very aggressive, malignant brain tumor she has. The family received bad news yesterday that the tumor is spreading faster than anyone expected and that the chemotherapy will have to be started sooner than later to give her the best chance for survival. It is risky because she is still recovering from shunt surgery, but they are running out of time.

Stella, whose parents have already endured so much heartache in the loss of their infant daughter Charlotte 4 years ago; Stella, whose 7-year-old brother Davis has had more than his fair share of exposure to death and dying. Why, why this family? Why can't this cup pass from them? No one should have to be strong even once in the face of the uncertainty of whether their child will make it, and now here they are a second time. There are no easy answers. There are no magical words. There are no guaranteed happy endings. But there is still hope. And as Amanda (Stella's mom) says, there is still today. There is still prayer. God is still who he was yesterday, and while I will never understand these things in this life, I will trust & I will pray.

If you'd like to follow her story, Stella's caringbridge page is here: www.caringbridge.org/visit/stellamulhearn

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The beginnings of confirmation and a plan going forward

I think this is our 5th day in the hospital. Time is passing sowly and the days are running together a bit, but Ella has handled being cooped up really well, which is a blessing.

Dr. Luat came to see us this morning with printouts of the EEG from before, during, and after Ella's seizure yesterday. She said that everything she sees indicates that the seizure started on the left side and generalized to both sides shortly after. Then when the seizure was over, there continued to be abnormal spikes on the left side for a while. This correlates with what the PET scan showed--a likely left-sided brain abnormality--which is what we were hoping for because it means that surgery could help her.
The doctor would like to capture at least one more seizure if not two because then we can see a pattern and know for sure that this is typically what her brain does, rather than being an exception to the rule.

It seems we will be here at least one more day to give Ella time to have more seizures. My mom continues to be here with us, which is a huge help since one of us has to stay in the room with her at all times. It is an active job to make sure she doesn't get tangled in her wires or accidentally pull her leads off, let me tell you.

That's what we know so far. Thank you for keeping up with us and for your thoughts and prayers. We miss our boys at home, but I'm glad we're getting some useful information and making the trip worthwhile.

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Making progress

Right after waking up from a long nap this evening, Ella finally had a seizure while hooked up to the video EEG. It was exactly like the ones she's been having since March, which is what needed to happen--a typical seizure while hooked up. I've never been happy to see a seizure before now.

I hope they got lots good information from it. And a bonus was that the nurse was here at the onset & observed the whole thing too.

Our doctor would really like to see at least two typical seizures, so we have at least another to wait for. But her pattern has been to have a second seizure in fairly close succession.

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Ella Update

It was brought to my attention that some might want to follow Ella's progress while in the hospital here (instead of just on Facebook). I have copied my last several status updates so those who want to can be brought up to speed. And going forward, I will do better about posting in both places.


Friday Evening

We made it to Childrens. Ella's all hooked up to the EEG; the actual hook-up was not her favorite thing. The doctor asked us to keep her up until now because sleep deprivation may help trigger seizures. No news yet.

Also, in this huge hospital the chances are crazy slim but we are actually 2 doors down from Stella! We got to see her smiling during a blessed visit from her brother Davis. She is precious.


Saturday morning

Good morning! We're up bright and early today--again because of the doctor's orders. No seizures upon waking. Next opportunity will be nap time probably. Ella is missing her second straight dose of medicines this morning. Perhaps we'll start to see something soon.


Saturday evening

No seizures today. Still just waiting. Ella had a pretty good day. She's handled being tethered to the wires with considerable charm and has been mostly pleasant all day. She got to see her daddy, papa, and brothers on skype, which she loved. We have to keep her up late again tonight. I hope we capture some useful information tomorrow.


Sunday Morning

No seizure again this morning. The attending was just here. She wants the EEG tech to try some flashing lights and have Ella blow on a pinwheel, hoping to trigger some activity. Today begins the third day without medication.


Sunday Evening

Not trying to be a broken record, but still no seizures for Ella. She continues to be a pleasant little girl though and has been running circles around the room.

I went out today for wifi access (children's has the app store blocked) and got some new free apps for mom's iPad so that Ella has a variety of games. Ella is blowing me away with how quickly she is picking up how to use it and what the different games require of her.

Pray we get seizures recorded soon. We are looking forward to being back home.

Speaking of which, Stella got to go home today. Pray for her increasing strength and all her upcoming treatments.


Monday Midday

We are set to stay until at least tomorrow at this point, since there's been no seizures. Dr. L wants to take advantage of this test since we've come all this way and gone to all this trouble, so she thinks we should keep trying. I'm glad that we aren't settling for nothing, but my heart has turned toward home, which makes staying here difficult at the same time.

Ella maintains her pleasant & playful disposition, and I'm very grateful for that.

Odds are in our favor that a seizure should happen soon. Her last one was last Wednesday, and they average around twice a week in frequency.

If you see them, hug my boys for me. I'm missing them like crazy.

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