And the Hits Just Keep on Coming

On Tuesday the docs had told us that even though we had't seen any obvious seizures, they were picking up a lot of seizures on the EEG. They were feeling pretty confident that she would be a surgical candidate and had even told us we could likely go home on Saturday (three days early). As good as that news was, I told Kev that I would feel a lot more confident if she had at least one "good" seizure - one that I saw. Well, I guess that's why they say you should be careful what you wish for because yesterday morning she had three seizures all within a two hour period - and with vomiting in between. The doctor came in and decided they had received enough data before starting her back on meds. Since she had multiple seizures in such a short period of time, they wanted them to stop. He also shared with us that during those big seizures, multiple electrodes were firing at once. So it's hard to tell if those seizures are starting at one point and spreading super fast or very wide-spread seizures that start all at once. He will need time to thoroughly examine the EEG data to determine.

And then last night, the surgeon came in to deliver some scary news.

Now they want to do a biopsy of Cheyenne's brain to rule out a very serious condition called Rasmussen Syndrome. They want to do the biopsy because that is the only way to 100% confirm or eliminate it. They already have the wholes drilled in teh place they will need to do the biopsy, so we would really be remiss not to take advantage of it and do it just in case. However, he can't "squeeze that in" on Friday as he was planning to remove the electrodes on Tuesday, so now we have to wait until our original time slot in the OR on Monday.

They think there's only a low change that she has it - but still A chance...and IF she has it, the only way to "treat" it is to sever both halves of the brain - which you can imagine would present it's own set of challenges to overcome. So then we would be faced with a quality of life vs. quality of life discussion...

And if I'm being honest, I am a complete wreck of emotions. I'm sad and depressed but I'm trying SO HARD not to cry so she doesn't see how scared I am for her. I mean one of us has to be strong! If either of us should be frustrated and crying right now, it should be her. She's the one stuck in a bed for days and days with all kinds of strangers comin gin to talk to her and make her perform silly tasks over and over. She's the one away from her family, her school friends, her toys, her pets - but SHE is handling it very well. She only voices the occasional complaint of "I want to go home." She is a trooper.

And Lord help me, that right now the ONLY thing keeping me from losing my mind is that I know - without any doubt- that she would be dead if she was still in China.

And on top of all of this - we have the scary stuff with Faith going on too. Tomorrow morning we have her first appointment with the neurologist AND with an oncologist. The only bright side is that we were actually able to miraculously get copies of her MRI scan done in China. I received them yesterday and have shared them with Chidren's...so hopefully they will be able to tell us more tomorrow. we could REALLY use some good news.

So please keep praying for BOTH our girls. 

Fear Can’t Reign in a Heart that is Full of Gratitude

Here we sit in the waiting room of Children's Hospital while our daughter is having the first of multiple brain surgeries. I thought I was doing okay with everything until the car ride here...that's when the lump that's been living in the back of my throat grew about four sizes. Everything suddenly seemed so scary.

When the anesthesia nurse came in, she told us they would not be able to have us stay with her while they put her under due to it being a sterile environment. This was the first time since we've had Cheyenne that they weren't able to allow us to stay with her until they put her to sleep. They also said they will need to wake her in the OR to ensure everything is okay. That will be the first time she will awaken after any sedation or procedure without us being with her. That news made the lump grow another size or two.

The doctor (and the assisting physician) came in to talk to us. They said the procedure could take any where between 2.5 hour and 4 hours. Since they are inserting the electrodes into both sides of the brain and they are using a robot to assist, there are many possible delays/technical difficulties they may need to work through. Then once all the electrodes are placed, they have to take her for a CT scan to ensure they didn't accidentally puncture any vessels....yep the lump just grew another two sizes.

Once they took her back, Kevin and I went to the Cafe to eat breakfast but neither one of us really has any appetite. We walked around the gift shop for a few minutes and bought Cheyenne the last remaining Paw Patrol pup she doesn't own. (We buy her a new one with each procedure requiring sedation. So if you know the show, you can do the math.)

So now we are sitting in the waiting room trying to busy our minds with anything other than the unspoken fear we are both feeling.

So instead of letting the fear win, I've decided to list all of the things I'm thankful for regarding this day:

1) I'm thankful we were able to keep Cheyenne healthy enough to proceed. Three out of four of our kids have been sick over the past two weeks, and she was the odd one out...

2) I'm thankful that Kevin and I are both healthy and therefore able to both be here together.

3) I'm thankful the surgeon and staff are healthy and therefore able to perform the procedure.

4) I'm thankful for the upbeat music playing on my drive in this morning. It was the only thing keeping me from crying.

5) I'm thankful for the flexibility of both our employers, especially mine. My boss and coworkers have been great in supporting me through all of this, even when it means they have to carry heavier loads.

6) I'm thankful that we live very close to the #2 Children's hospital in the world (any honestly, they should be #1). It gives us peace of mind that we likely wouldn't have elsewhere.

7)  Oddly, I'm also thankful for the brand new iPhone watch I just bought yesterday. Twice in less than two hours, it has sent me a notification reminding me to breathe and telling me how a good deep breath can help to reduce stress...maybe someone can tell me if this is a "normal" message or if it's really smart enough to know how stressed I am this morning. :)

8) I'm thankful for our other kids being so "self-sufficient" that we are able to spend this time getting Cheyenne the care she needs without having to overly worry about them as well.

9) I'm thankful this week has fallen in our nanny's winter break from school and how awesome she is with helping our family and entertaining the other kids.

10) Most importantly, I'm thankful for the huge amount of outpouring love and support we're receiving from friends, family and coworkers. Whether it's an encouraging text, offering to bring food to the kids at home, or simply an ear listen, it means so much.

Even though they took her from us about 7:35 this morning, they just now (10:35) gave us an update that she went to sleep fine and they just got the robot in place...which means even though we've been waiting for three hours, they are just starting the actual procedure.

Lord, please be with the surgeon and staff as they proceed. Please guide his hands and help ensure proper placement. Please be with Cheyenne and keep her safe. Amen

I will try to write another update later this afternoon or evening. In the meantime, thank you all so much for keeping our girl in your thoughts and prayers.

Prayer Warriors Needed

Last July when the doctor gave us the official diagnosis of Epilepsy for Cheyenne, it took my breath away. And earlier this year when they determined that her particular type of Epilepsy has less than a 3% chance of ever being controlled with medication, I thought things couldn't get much worse...but last Friday, it did.

The day we met Faith we noticed she has a subtle head tic. It occurs almost all the time but is even more pronounced when she is stressed. This, in addition to her head circumference measuring in the 97+ percentile (compared to height and weight below the 10th percentile), had the International Adoption Clinic doctor (Dr. Staat) concerned enough to refer us to a neurologist who specializes in Movement and Tic disorders. Knowing the neurologist would want an MRI, Dr. Staat proactively ordered one. The MRI was done on 12/26. We didn't expect to get any information about it until our appointment with the neurologist next week. So imagine my surprise when I answered the phone last Friday morning to hear Dr. Staat's voice on the line.

Dr. Staat knows us well. We started working with her and getting to know her very early on in our adoption journey to Cheyenne in 2016, when Dr. Staat reviewed Chey's Chinese file with us. We worked with Dr. Staat after bringing Cheyenne home. Dr. Staat also spent a good deal of time working with us on the file of the little girl we ultimately had to turn down because of new medical results Dr. Staat uncovered. She reviewed Faith's file and when we brought Faith in for our post-adoption appointment, it felt like reuniting with an old friend when we were with Dr. Staat.  I say all this to help you understand that she knows us and we know her well enough to know when something feels "off".

I had that feeling from the moment she started talking and how she seemed so hesitant to say whatever it was she was trying to say. She asked me if I had read the MRI results on MyChart. I explained I had but didn't really understand what it all meant. I knew something was not good because I did read that they wanted to do another scan in 1-3 months, but we went through that with Cheyenne, so it didn't scare me too much. Dr. Staat went on to explain the results to me. She was using big medical terms (like neoplasm) that I didn't understand. Again, I could tell she was choosing her words wisely in an effort not to scare me, which of course was scaring me. When I asked her to just "give it to me straight", she said the words no parent ever wants to hear - CANCER! For a few moments, the whole world came to a screeching halt. Dr. Staat went on to explain that they see something on the scan, at this time they are unsure of what it is. They listed three possibilities, but neoplasm (cancer) was one of the three possibilities. She told me that as soon as she read the results she contacted the on-call neurologist who also read the results and reviewed the scans. Together they determined that while nothing seemed to be emergent, we should change our appointment from the Movement & Tic disorder doc to a different neurologist, specifically the neuro-oncologist. The new doc they want us to see if off until tomorrow. Dr. Staat told me that she would personally call that doc tomorrow to request for her to see us as soon as possible. But for now, all we can do is wait.

I asked Dr. Staat to level with me and give me the best and worst case scenarios, recognizing that she herself is not a neurologist. She told me that best case scenario was that whatever this lesion is they see is nothing. It's a benign infection or something that can clear up on its own and no harm will come. Worst case scenario is that we discover it is cancer and have to treat it in the same way as any other cancer is treated - with chemotherapy. What's worse is, because it is in the brain, the chemo could alter the healthy parts of the brain surrounding it.

Dr. Staat asked me if Faith ever complains of headaches, seems overly tired or vomits. I told her no and in fact, she seems extremely "normal". Dr. Staat agreed those were all good signs and attempted to reassure me that this is just one potential diagnosis and to not panic. And we're trying. Some days we do well, other days (mostly quiet nights), I'm in tears thinking and praying about it.

In the meantime, we are attempting to gain copies of an MRI that she had done in China (2.5 years ago). Our agency says it's a long shot but they're trying.

Not that news like this could ever come at a "good" time, but as timing goes, this is at least a time when we're very distracted with other concerns. Cheyenne goes in at 6:00 Monday morning for her Phase 2 Epilepsy testing. She will be in the hospital until 1/15 and I will be with her pretty much the entire time. This will have me/us worried enough to hopefully not worry too much over something we have little information on.

These days, the thing that gives me the most hope is the reminder, we named her "Faith" for a reason...we need to have Faith Over Fear - now maybe more than ever.

We know God has a plan but many times it's really hard to trust in Him. Please pray for healing for both our girls and pray for strength for us.