So, I need to go to Pennsylvania

That was in essence my phrase for Thursday. There are very few options for summing up life post getting a call at 2:30pm on a Thursday saying you need to come home because your mom is doing bad enough that your aunt wants you and your sister to drive home. Here are a few other phrases of the week so far that help to sum up what is going on...

"I like free cell because it makes me feel like I have control. And when I feel like I'm getting out of control I just click 'new game'." -Brandy

"The sad thing is, the fact she hasn't eaten or drank anything in 2 days is the least of her problems, and the doctors aren't really all that concerned about it." - me

"That nurse....probably won't be calling us back." - Aunt Dona

So...let me start from the beginning. I don't think I've actually put much on here about mom since the transplant, but about a month ago her bloodwork started coming back weird again and they started finding blast cells (the cancer indicators), so they did a bone marrow biopsy and found that her bone marrow had been starting to grow again. New plan on treatment - they threw her back into a chemo regime, and off the rejection meds to try to get her body to start the graft (i.e. Brandy's cells) vs. host (i.e. my mom's cells) disease (i.e. symptoms showing there is a fight going on)...otherwise known as GVH. They succeeded pretty well, and for at least a week or so my poor mom has been covered from the soles of her feet to her neck with this GVH, which looks red and swollen and peeling, similar to a mix between a really bad sunburn and then after the sun burn is over when your skin is peeling, and when you sat on a plane too long and your ankles are all swollen...but all over your body. For whatever reason GVH generally does not attack the face so her face was spared the disaster the rest of her body was going through. She had said she was feeling bad, and she was getting less and less able to walk around as she got more and more swollen and red and blistery and peely. But because I wasn't up here and I really had no frame of reference for GVH I didn't really get what all was going on.

So, fast forward a few days...Wednesday night I was walking Kaylinn and felt like I should call home. My mom had just a bit short of an emotional breakdown on the phone with me about how she feels like this graft vs. host disease is killing her and she was tired of the fight. Indicator #1 we've got a problem. But after I was talking to her for a while my dad came home,I could hear her voice sound better that he was there, so I got off the phone, had my own personal crying party and then read the Bible until I calmed down and went to bed. Thursday afternoon, I was sitting on a conference call at work and saw my parent's house was calling on my cell phone. About 5 minutes later I saw a call come through from Brandy's phone, and about 30 seconds after that saw a text from her 'call me asap'. Indicator #2 that we've got problems. The call was supposed to end in 10 minutes so I texted her to ask if I should get off the phone then or call her in 10 and she said to call in 10...so at approximately 2:30 on Thursday I was informed that my aunt was trying to get in touch with us to move our trip up north to right now because Thursday was not going well. At which point entered my phrase for the day to explain my immediate departure from life - cancelling the rest of the day's calls, dinner plans, weekend picnics, and Sunday teaching. And leaving my poor intern and previous intern to deal with the three full day meetings that will be going on next week.

24 hours after talking to Brandy, I walked into my mom's hospital room. There are really not words to describe it. My aunt tried to prep me on the way to the hospital, I tried to prep Brandy the next day on the way to the hospital - in reality there is no way to prep someone. My aunt delivered the full story on the way down. Apparently on Thursday morning my mom noticed her tongue and lips felt a bit swollen. My dad had decided the night before to stay home from work based on the night before, and she didn't fight him, which is a good indicator she is feeling bad when my mom doesn't fight you on it. She called the hospital and they called in a prescription that my dad went and picked up, but from about 10am until about 2pm when my aunt called Brandy and I things became much much worse. My uncle is an ENT (ear, nose and throat doctor), and when my aunt saw how quickly my mom's face was swelling she called him to get him over there because she thought he was going to need to open her airway. Then she called the hospital again and literally had to threaten a nurse to even get a doctor on the phone (that is the nurse that she said will probably not be calling back). When we got my mom's doctor on the phone she was saying there weren't enough beds, my aunt's response was 'there is no one in that hospital that needs a bed more than my sister right now'. She finally forced the doctor to agree to let her come to outpatient to be looked at but said she can't guarantee a bed, to which my aunt said 'you may as well get a bed ready because when you see her, you'll admit her'. And she was right. My dad had to carry her out to the car because she couldn't even walk her feet were so swollen and blistered from the swelling. At the hospital my dad dropped them off at the front door, my aunt took her in a wheelchair to outpatient and by the time my dad parked the car and walked up to outpatient they had moved her and admitted her. My aunt said they literally took her vitals and admitted her. She had a fever of 105, her heart rate was through the roof, and in her words she 'looked like she had walked out of a horror movie'.

I'll spare the details of their first discussion with the doctors, except to say they finally agreed to stop the GVH, which involved "massive amounts of steroids". She has so many things dripping into her the IV stand is literally filled.

We are not taking any pictures of my mom because that is just wrong, so we tried to find a picture on the internet to explain what is happening to her (because I promise you, you have no idea, not in your wildest imagination). We could not find any. There was one of a person's hand that was kind of close to what her whole body looks like, which we actually found under the search topic 'severe burn victim skin falling off' because my aunt said the only thing she has seen like her skin is severe burn victims. But, I decided I'm just not even going to post it. Her poor little eyes are barely slits - you can't even see her eyelashes they are so swollen. And her lips are all broken open and bleeding. She can't feed herself because she can barely use her hands at all. Even if she could use her hands she can barely open her mouth because of the sides of her mouth, and the inside of her mouth is like all the rest of her skin so it hurts and is peeling, and it's just awful. Today she actually drank an entire 16 ounce high protein shake we got from Gold's Gym (we think outside the box, people), which was good.

But each day she is getting better. The swelling is going down. Her skin has turned from one shade short of purple, to really dark red, to dark red, to most of it just being red now. She asked me when I'm going home because 'I'm HAVING that picnic on the 14th and you need to come back again', although then when we were discussing how to rearrange plans so Brandy or I could be here over the next 2 weeks she didn't really fight us - so her feistiness still has a bit of a way to go. She is talking more, which is a decent health indicator for my mom, but it still hurts to move her mouth, so not too much, and she still gets pretty sleepy from just about anything because it's such a process for her body just to keep itself going. But she is laughing at our jokes, and telling us what we need to get done, and slowly but surely becoming and looking more and more like my mom.

So two things for the world at large to ponder before I go...
1. One of the hardest things about major illness is understanding when to trust the doctors and when you need to be your own advocate. My mom very literally could (and possibly would) have died on Thursday if my aunt hadn't made the decision at that moment that what the doctors 'knew' was no longer the answer. When to draw that line is very hard because you can't go through major illnesses questioning the doctors every step - it's not healthy for you or helpful for them - but you also can't go through the process taking everything they say as gospel. God gave my family a lot of nurses, which is very helpful in a time like this, and I can only pray that other families are as blessed.

2. Inevitably I always get the question 'so, how are you doing?' What really is one to say? I'm not sure how to answer it, I don't know what people are looking for in asking it. I'm doing pretty crappy, but that doesn't mean that I need to act or let myself feel that way. Life goes on. You can't sit and cry all day, and you can't whine about the boulders in your way at the moment. You have your moments (I personally choose to have those moments between me and God and really prefer others not to be involved in them), you pick yourself up, dust yourself off and you move on. I don't really know what else to say. I don't feel the need to dwell on how I feel, because I've chosen to not be led by how I feel. But I also don't feel the need to say all is well and pretend I'm fine, when I'm not. So, all of that is to say. I'm crappy, but I'll be fine. God and I will work my personal emotional issues through, I appreciate every prayer that goes up for me, it's really and honestly the best thing you can do for me at this moment. Sometimes I just want to go on a bike ride to the snowball stand and eat a peppermint patty snowball with marshmallow and then a mounds snowball with marshmallow...because, well, why not? Snowballs are delicious. Bike rides with your sister and brother-in-law are beautiful. And life isn't going to stop just because your own tiny slice of the world hit a bump. Pastor Harris preached out of Isaiah 51 today, but as I sat reading the rest of the chapter and into Isaiah 52 these were the verses that stuck out to me - "Awake, awake, O Zion, clothe yourself with strength, put on your garments of splendor...shake off your dust...for this is what the Lord says 'You were sold for nothing and without money you will be redeemed'...Your God reigns!...burst into songs of joy together...for the Lord has comforted his people."

Amen. and Good night.