November 6th

Eylah News,

The stent placement went fine today, and her labs showed that her counts are slowly climbing on their own right now, so we are hoping to be over this hurdle.

Those high-er counts are giving her an abundance of energy. It’s wonderful to see her feeling so great again, but being her only adult, or really any human interaction for that matter, for the past five days, I’m beat .

Only one more appointment this week, and it’s an afternoon one for a change, so I’m greatfull to not have to hit the ground running for once.

November 4th

WE BROKE OUT!!!!!!!

It took some conversations and schedule checking, but we finally convinced them to let us leave for tonight, and just come in for our regular scheduled clinic visit, followed by surgery to replace the stent.

About those scans....

Lungs are clear, and the main tumor spot is nothing more than inactive cells that the body should continue to break down and process into nothingness (essentially). Unfortunately that clump of cells is what’s causing us to need this stent replaced, but from an oncology stand point, everyone was very pleased with the results. As of now the treatment was a success, and in three months we will get new scans and make sure that clump is in fact shrinking.

Pic of Eylah, checking out the trick or treat load her sisters scored and will be forced to share .

Be thinking of our girl tomorrow while she goes through another surgery, and on Friday as we meet with the radiology team to discuss last step radiation.

AUGUST 19th

8:00am In a brief summary;

I picked Eylah up from school for not feeling well yesterday. Most of the day she laid around, even took a short nap and said she felt better. By dinner time she felt bad again, looked pale (not unusual) and even with Zofran, refused to eat. By 9:30pm, she was lethargic, clammy, and refused to stay awake for us. We had to call 911 and let them bring us to Riley by ambulance. The whole ride in she did great, stayed awake, but not willing to have a conversation. We checked in at 10pm. They ordered labs and a CT (standard oncology stuff) and we waited our turn. While waiting our turn, at about 12:30am, Eylah’s blood pressure was noticed dropping on the screen. Two nurses came in to recheck it, and the next thing I know there are 2 doctors and at least 6 nurses and they are telling me, “we have to move her to room 2.”If you have been to Riley ER, you understand, YOU DONT WANT ROOM 2! So we get her in, her BP bottoms out at 48/31. SO. MANY. PEOPLE. WHERE DID THEY COME FROM? They start her on warepinephrin, she still won’t wake up, her breathing is weird, still breathing but weird, breathing. The doctor says, “we have to intubate her, whatever is happening, it’s taking too much for her to focus on it, and also let her breathe. She’s working too hard”. So, there I am, in a room full of people, all alone, as they work on my baby, and poke her some more, and place breathing tubes. They were able to get her a full unit of blood, during all of this, and almost instantly her color started to return. Once she was stable, they got her CT images and brought us up to PICU, where she was placed on a ventilator. (From 12:45-2am there was someone hand pumping for her). The diagnosis is extreme anemia and dehydration. Her counts plummeted, and with her being extra nauseous this round, she wasn’t able to keep down what little she was willing to drink. She has received 2 units of blood and a unit of platelets. They have her three fluid boils’ in the ER and have been running saline all night, and she still hasn’t peed. The goal today is to get her off the vent. She has been breathing over it, they are really keeping it in at this point just to be sure she doesn’t dip again and need to be re-intubated.

6:00PM

Update on Eylah. Around 1pm today they removed the tube and vent as she was breathing on her own well. She is awake and talking currently but still very tired and groggy. She tested negative for Covid but positive Rhinovirus (the common cold). Hope is they will move her out of the PICU and down to the cancer floor soon. There is no date for discharge at this time we will have to wait and see how she does tomorrow. Thank you again for all the positive vibes and prayers.