Neuro Visit and WHAT A TEAM!

Today was a half day of doctor time for us. I woke up exhausted and the most precious babysitter in the world arrived from the service we use two days a week to help with Aiden. She is awesome, and is CPR and First Aid trained which helps. She didn't even hesitate to say, "No problem" when I explained to her about Aiden's episode on Sunday night and how he might be on the upswing of more seizures as we get his medicine regulated again as he continues to grow and fight the Epilepsy. He's such a happy boy, but she did say he slept more today. The neurologist warned us that it might be a side effect of the increased dose of the seizure medication.

After working a half day, I ended up at Sophie's school in time to eat lunch with her. It was so much fun! She's been begging me to eat lunch with her for MONTHS, so I was more than happy to oblige because I had gotten to her school a little earlier than I had thought I would.

Sophie was totally happy. She even got to introduce me to her friends!

After lunch at the school, they said I had to go back up to the front office to check her out since I had just been "lunching" and since I was checking her out, I had to follow the proper protocol and sign her out. I understood, so I went to the front office and signed her out. I stood there for a few minutes after they called her, and as I waited, I heard this loud alarm go off. It was a fire alarm! The way the office scrambled I could tell that it wasn't a drill, and they said, "you all have to go out to the front of the parking lot. NOW". So, I complied, but thought, "Oh great, my kiddo is on her way to the front office and an alarm is going off"... I took a deep breath and walked to the front of the lot and stood there for a few minutes with the front office staff. I didn't say much, just prayed that all of the kids would get out safely and that no one was hurt. Especially my sweet girl. It was about this time that a teacher in her grade was walking with her to the front of the lot where we stood. I tried to act all nonchalant, but I wanted to hug her and say, "Thank God you're ok!", but I didn't... I just calmly walked her to the car and put my arm around her. We both looked for smoke as we drove away. Someone said that they thought someone had set off the smoke alarms while making their lunch. Funny how we never got an email from the school about what happened or anything.

We drove up to the neurologists office and Sophie was red-cheeked and scared to death, I think. She hates doctors (understandably so by now) and she didn't want to get poked and prodded again. She's already been through so much. This neurologist has changed our life. He's incredible and takes the time to really listen to the patients and the moms. I have seen first hand through my son, that miracles can happen with the help of good doctors and he's right at the top of my list. Today's another reason why. He got the breakdown of what's been going on with her headaches and we explained how we have walked the road of LCH for only a few months, but that we'd be going back to the cancer center on Monday for our follow up and to review results. He was very interested and he just looked at me in shock as I told him that this is Aiden's big sister, you know Aiden's the one we spoke of on Sunday night that had the weird Epileptic episode and you increased his medicine. He said, "okay, that's how I know you... Aiden... you're a single mom, too, right?" I nodded. Sophie said, "and she's MY mommy."  She was so proud and he said, "You know, you're lucky to have a mom who's so organized, as he thumbed through all of her test results that I had compiled into a tabbed book with a worksheet of her office visits attached. Call me anal... I don't care. It's something I can DO for my kid... When I feel like I can't do much.

On a clinical note, here's the breakdown of what happened. He reviewed the MRI, CT, PET Scan, three biopsy reports, blood work, etc.... He assured us that nothing major is wrong with her brain. Good news! He said that he understood our frustration because we keep calling the doctors with the cancer center, and they say to send her to the pediatrician for her headaches and the pediatrician tells us to go to them. I told him that when I think headaches, I thought of him for what he has done for Aiden. He thanked us and said that he could help. He has recommended two medicines to help with her headaches and wants us to keep a headache log. He also said that he wants to do a sleep study on her. He said that some of her symptoms lead him to believe that she's not getting very good sleep at night. Doesn't surprise me one bit. And, since her immune system HAS to be strong right now, he recommends that we do a sleep study. She didn't like the idea, but since it's just some leads on her, and nothing invasive, she thought it would probably be alright...

He then asked Sophie to leave the room and go talk to her MA and once the door closed, he looked at me and said, "How are you even here right now? How are you smiling and having such a positive attitude given everything you're going through?" I said, "I don't know" and started to cry. For a person who has gone through the journey with Aiden and now with Sophie too, he really gets this mom. He explained to me that we needed to probably get another biopsy of the skin, because he too thought that maybe since they didn't do the immunostains that it might hinder an accurate diagnosis. He recommended that we receive a recommendation from the cancer center about what dermatologist they recommend in the medical center. He then said that he would be an advocate of sorts and try to help us as well as he could. He said he was so sorry that this LCH diagnosis had been handed down. I said, "I know we'll get through, through the grace of God we will" and dried my tears. I told him that I was going to fight tooth and nail to make sure she is comfortable and as normal as she is able to be. Her condition may deteriorate and he did warn me of that, but he also said that she looked really good given her diagnosis and he was hopeful for a positive outcome given how strong she is. I told him that I was worried that something is still going on in her body. With headaches and fever every day and not even wanting to play outside when the weather has been gorgeous, well that's just out of character for her. As I walked out to find Sophie, the doctor turned to me with tears in his eyes and said, "There just aren't words... You guys hang in there, and I want to see you in a month." I got a little choked up again, said "Thank you" and we went to the front desk to check out.

There was more said that I can't remember right now, I am sure in time I will. What mattered was giving him the result and his promise to email the cancer center tonight so that he and the other doctors were communicating and hopefully reaching some understanding about what the potential next steps will be for her. Something is still wrong and I pray that the headaches will be somewhat pacified by the medication he is recommending, but I realize that they may persist. We just have to take it one day at a time and know that God is here. With us...

As we drove home, I called a few family members to give them the "cliff" notes version of what had happened. I didn't want Sophie to have to hear me repeat myself over and over. I found out that my mom and my niece and nephew were painting pottery, so we went and joined them. The girls had a great time.

My sweet niece and Sophie (R) painting their pottery.

Sophie's finished puppy. She's so creative.

I am praying for health and healing every day. I am tired, but pressing on. I am grateful to all of you for reading this and for the kind comments and cards and things you have all sent to encourage us. This is likely to be a very long road, but we're all in it together. My family, friends, God... What a team we are!!! We can do this!!!



Goodnight Friends,
J