Go

Discharged to CRI at 3:00! Hallelujah!! Praise the Lord.

X-ray

I'm not going up with my year of you you are my friend you know you love it and you you yyyyy[[{}#%^*_\|~<>>€

(me pressing the middle button)

Guess who's getting an x-ray? Yes. Me. I guess cussing in the church she hospital isn't the best idea but it had to be done! Huge snap crackle pop rice crispy's!

Now I kind of want to see how far I can get because I'm competitive like that. God warns people not to be competitive but I just have this thing about competition striving high and not fearing the worst. About being all in when no one thinks you'll succeed-not even yourself. This is been the worst year and we're not even halfway through it but I'm almost at 24 months two years and I wasn't supposed to make it three so that's worth something. God has a plan, just may not be what I intended, or hoped it would be. 

Don

Everybody wants an update I am Donald Trump and I say the wall is going to be huge...

OK this isn't actually Donald Trump but I had to entertain myself. Seven days in this joint will make anybody go crazy. I said joint Ha ha ha I'm in California ha ha Ha with a 24 Hour Donut Place which has the best donuts in the world. 

Have I mentioned how bad insurance sucks? And that I've been here for a week and I only needed to be here for at least two days: Hory shet! That's like five days longer than I was supposed to be here! shut up, that was for Skip who just keep singing "I'll be coming around the mountain when she comes".

It's two days so all of the baby or whatever when something's born they play this obnoxious lullaby and it's not even a lullaby it's like there's one lullaby out of all of them. 

Oh then guess what at like 2 AM we're having low blood pressure! No reason just low blood pressure. So they placed me on my back for like three hours at 2 AM and I woke up aching from head to toe. Two hours and the Tylenol already wore off yay. So it looks like healthiest sick person there is just randomly goes into low blood pressure. I got to get out of here or maybe I'm low on potassium!!!??? Blagh I should've taken Arion with me!! We even talked about it.

So now we continue to wait on insurance and whatever else we need to do I don't want to be transported because I want to stop by the store and I'm not going to get to do that. I'm gonna die in this Horrible place because I'm going to stab my heart!!!

Anyway let me focus on my kids. We are going to have family breakfast at the hospital should be delightful actually it will be because it's chicken and waffles and if you've ever had chicken and waffles I have not. But I will update you and let you know how chicken and waffles are. 

And then we will go to 12 o'clock mass at the chapel on the hill in the hospital whatever. I'm totally live like a firecracker ready to explode and Skip thought if he can leave the door open he's get the point across that I want to leave. not working.

I could use some mail. Obviously something positive and lighthearted and I don't need any gift cards. This is Rock bottom. Somethings going to have to grab my hand out of this one.

Garden

This is what "garden privileges" looks like!  After a few rounds of doctors approvals, Nadine Lewin Wall was FINALLY able to enjoy the sun outside today with husband, Skip Wall and daughters, Madison and Alana.  

Five days ago, surgeons took over seven hours to remove necrosis that was developed from the radiation, as opposed to tumor growth! (GREAT NEWS) They was able to remove all, or at least most of the tissue with seemingly-clear margins. However, she cannot walk and her right side is still extremely impaired. 

This will take time. And no doubt it's frustrating and confusing. But I continued to be amazed by her unwavering faith in God and positive belief all will continue to progress.  

Skip said tonight she is also encouraged by all the prayers and the entertaining Unicorn posts on her Team Nadine support page!!  Thank you! 

(BTW-  for those who have never seen a scar from brain surgery - photo in comments - 6"x1" incision). 

#berealistic #expectmiracles #redcup #miracles

Quick surgery recap

Nadine is out of surgery! We just met with her neuro-surgeon and he conveyed that it went as well as it could have possibly gone, which is great news. The tissue removed will be sent for biopsy to confirm, but the surgeon is confident that it was necrosis from the radiation, as opposed to tumor growth. He was able to remove all, or at least most of the tissue with seemingly-clear margins. The shadow area that had been seen in the MRI had been feared to be a tumor infiltrating into healthy brain. He is confident that this was not the case. The basic situation was that the impacted tissue and inflammation was pressing and stretching the motor cortex. Certain tissues were pushed to the left and others were pushed to the right. They monitored electrical signals throughout the procedure to ensure that impulses continued to travel as required, while removing the tissue that was causing this. As a result, she is expected to recover with no additional loss of motor function, and with hope of regaining some of what has been recently lost. Additionally, the removal of the tissue will reduce the pressure which is hoped to alleviate her seizures.

I'm sure that there will be more to learn, but the initial result is very promising. Thanks for the continued thoughts, prayers, and support.

The week leading up to LA

So it's about Tuesday, May 9th, about 7:45 pm (pst). I'm sitting in the office of Tower Imaging on Wilshire in Santa Monica, CA. Nadine is having an MRI of her brain, to compare with the one done a month ago in GA. So, I'm now sitting and attempting to sort out my many thoughts from one of the most hectic weeks of our lives. Let's start with the weekend before last.

We have this place in Ellijay that we bought several years ago, pouring more time than we ever imagined into it, but doing so on a shoestring budget. It had been Christmas since we had been there. Nadine was feeling like a change of scenery, so we made a last-minute trip out of it. The girls complained, but we didn't care - we knew it would be peaceful. When we arrived, we were thrilled to find that our pond was about half-full of water. That's not sarcasm - we were really thrilled as it had been bone dry the last time we'd seen it. So we enjoyed the weekend. We enjoyed seeing turtles, playing a Monopoly rip-off called Atlanta in a Box, and even saw Nadine's brother try to zip line across the pond. Using a rope. And some sort of copper wire. There were too many moments to describe while sitting here, but it was great. On our second evening there, we sat down for dinner as a big group. Just before finishing, Nadine started having a seizure at the dinner table. Her seizures are partial, always focused on the right side, her weak side. This one was really mild. So mild, in fact, that no one else at the dinner table even noticed. She was sitting at the head of the table and I was to her right. I grabbed her meds quickly, but could tell that she was trying to hide it. It stopped after about 30 seconds, and we continued with dinner. Even now I don't think that everyone knows that this happened. After dinner, we packed, cleaned, and made our way home.

After being home only a short while, I received a call from Nadine's neuro oncologist. He had reviewed her brain MRI from the week prior and was calling to discuss his concerns. We knew that it wasn't good from the initial report, but it was compared with a much earlier scan so it was difficult for us to gauge. He, though, had taken the time to compare it with the MRI from only a month prior, and had a much better perspective than the preliminary report. In general, some was better, some was worse, and some had stayed the same. Specifically, some areas had resolved completely (YAY!) while one area continued to become more concerning. So that was the focus of the call. He basically explained that the area in question…

[Break: Nadine is out of her MRI and we made it back to the condo. So many issues with this place. Hopefully they'll take care of them tomorrow.  Anyways, now it's 9:45. Let's continue…]

He quickly explained that the left frontal lesion appears larger on the MRI. This may be the disease itself, or it could be radiation necrosis. Either way, this lesion is causing increased pressure and likely the primary culprit behind her impaired motion and seizures. That being the case, his recommendation was to move forward with a surgical option - likely quickly. I mentioned that we already have appointments for the end of the month but he reacted: "yeah, probably sooner than that." He then went on to tell me that he would be discussing with the tumor board as well as a surgeon. One part of the conversation that really stood out was on the notion of giving up. He said something to the effect of: I'm not promising that we can cure her, but you can make damn sure that we're gonna try." We then hung up and I went back to tell Nadine. Now, why did we never think that a surgical option would be available? Seems odd, but we always dismissed it as not a viable option. At the same time, that reminds us of just how serious it is. So talking to Nadine, she quickly decides that she's up for it. That leaves… logistics. Well, at that point we could do nothing but prepare, mentally. We didn't know intended dates. It would…

[Break: too tired, dozing. More tomorrow.]

So we didn't know much of anything at that point - only that the doctor thought that surgery would be her best bet. He was going to discuss with the tumor board and his preferred neuro surgeon and get back to us.

The next two days, for me, were filled with thoughts of how we'll make everything work, logistically. We were already planning a trip back to Santa Monica at the end of the month but the doctor felt we would likely need to come sooner. I started letting people at work know of the potential difficulties, but the lack of a detailed plan made it more of an FYI than anything.

Then comes Wednesday. The day was mostly uneventful, until evening. I was preparing dinner with the kids, getting the table set and all, and then heard Nadine say "seizure" from the family room. I grabbed her meds and ran to her side. We never give her the Ativan immediately, because so many times the seizure doesn't last and the Ativan knocks her on her butt. So we waited but only briefly. This one was going to be rough, so I gave her the first Ativan as soon as we realized it. The spasms got worse and I quickly gave her another. The seizure didn't stop and kept getting worse. I called 911 and worked to calm her as much as possible. The girls scrambled to wait for paramedics and put Jax in his crate. We were all terrified. I stayed on with 911 and her arm kept jerking to the point of exhaustion. Nadine started crying, screaming. And then, it suddenly stopped. The paramedics arrived moments later, quickly evaluating her and offering to take her to the hospital. We declined, knowing this was a reoccurring condition, and quickly contacted her docs in CA to let them know. She was hurting badly from the spasms, but was ok. We heard back very quickly and made some adjustments to her meds accordingly. It was a terrifying experience.

The next day, I get a call from her neuro oncologist in CA. We quickly talked about the situation and he decided that, in part due to the seizure, he wanted us to come out as quickly as possible, potentially for surgery the following week. I told Nadine about all of the details and we started making plans. I'm sure most of you saw various posts on FB and elsewhere. Team Nadine ramped up in full force and was able to help out substantially. The plan was to come out the following week: scans Tuesday, consultation Wednesday, and surgery on Friday. We worked into the night with many of you and were able to sort through airfare and lodging, for ourselves, the girls, and my parents. Nadine's parents were making plans in parallel. So, just after 1am Thursday night, we were set. Nadine had started conversations with the schools already, so things were coming together smoothly. I then switched to work mode for a couple hours, and then dozed off.

I started out Friday with a focus on work. I was focused. We sat in the family room. Lance and Max had come to visit Nadine, and I was about to migrate upstairs. Before I was able to do so, I received another call from her doc in CA. He had an idea. There is a promising trial that he wants her to participate in. So we talked through the details and I began to try to figure out the impacts to all of the plans finalized the night before. In short, if accepted into the trial, the surgery would be delayed 5-14 days so that she could begin taking the new medication first. If not accepted, the surgery might happen more quickly. So I was admittedly frazzled while trying to sort everything out. We decided to keep all of the plans as-is, and later found out that it was necessary regardless. We got a new list of appointment times and locations, and resumed our efforts to prepare for the trip. We would be leaving for CA in 3 days, for maybe a month.

[Break: to be continued as I'm finding myself writing way more than anticipated. Continued on Sunday, May 14th - Mother's Day, while Nadine naps.]

The weekend following continued with the same momentum. Madison had her 8th grade formal, and we had to continue prepping for the trip. Nadine had made a lot of arrangements with several friends to help Madison get ready; from hair, to nails, and pictures. She also made arrangements with friends for shopping for/with Madison and Alana. Saturday night went off without a hitch, and Madison really had a great time with her friends. It was a perfect way to say goodbye for a while. Sunday was primarily spent packing, and running a couple errands for last-minute travel needs. We all knew that Monday was going to be busy, so we tried to do everything that we could beforehand.

Monday started in a fairly typical way. I got the girls ready for school, then began getting Nadine ready for morning appointments. She had to be in ATL for labs, doctor visit with her Oncologist, and a quick IV of a bone-building drug. The doctor was pleased at how well she was communicating and how positively she was acting. It was a dramatic shift since the previous visit. We updated her on the pending trip to CA and went on our way. From the hospital, we went straight to Lana's school to visit with her class. Since we were not going to be in town for Awards Day, her amazing teacher put together a mini performance and ceremony, just for Lana. Afterwards we checked her out of school a few minutes early and she was then done for the year. The rest of the day was even more hectic, with the packing needs and Madison wanting to have dinner with some of her new friends, but we worked it all out. We even had a great dinner with friends. Afterwards, I packed into the night, eventually turning in after midnight.

Five AM came early on Tuesday morning. It was our travel day. While everything was mostly packed, it was still an effort to get everyone ready and out the door when our shuttle arrived. We left for the airport at 6:30, for a 9:13 flight. Because it was such an eventful day, I'm simply going to bullet some of the highlights:

• Lana puked in the car on the way to the airport. Glad Nadine had bags.

• We arrived and checked in all of our luggage. Running a little late, we didn't wait for our handicap assistance and took ourselves through security.

• Security was a pain, as it always is. The "special" sunscreen in her purse caused a little hiccup, but no biggie.

• The ATL airport has ONE elevator from security to the trains. ONE. We were already running late and were about 6 wheelchairs back from the front.

• We arrived at our gate and were the last to board. Madison handed over the guitar, which was put into a closet. We gate-checked Nadine's chair and made our way to our seats.

• Flight went well, just long.

• Arrived and had lunch while waiting for my parents to arrive at the next terminal.

• Met them and grabbed out baggage. Our hard-shell suitcase had broken. Big shout out to Delta - they replaced it with a brand new one. Super-fast and friendly.

• The six of us went to grab an Uber XL to our condo. It arrived and could fit us or our luggage, but not both. So, we split into two cars and headed out.

• When checking into condo, we didn't have any instructions, so we waited about an hour while trying to get all sorted.

• Made it into condo and found a few issues: broken sink, broken disposal, broken toilet, minimal towels. Fun.

• We later took off for Nadine's scans, scheduled from 5 to 8 PM PST. Keep in mind that we got up at 5 AM EST. Long day.

• While we were at her scans, some amazingly thoughtful friends loaded our kitchen with great stuff from Whole Foods and Costco. Such a blessing to be cared for in such a big way.

So that brings us to the point in time where I started writing. We finished up with everything, took an Uber back to the condo, and turned in for the night. The next appointment would be 8:45 the following day. As of writing to this point, I am now another week behind. I'll try to catch up with a subsequent post, but you can see that I'm slow, so it may be a little while.

Before closing for the day, I just wanted to thank each and every one of you for all of the support, whether spiritually, financially, emotionally, or otherwise. It has been a blessing to be able to bring the family with us during this critical time. I love and appreciate you all.

Skip

moms day

We Happy Mother’s Day everybody. This morning is very different. We are spending it in Santa Monica and our family, well most of us, are here. I wish you all a happy day and may really celebrate moms the special way. And it those who have lost their moms along the way just remember you’ll one day be reunited and celebrate that. I can’t imagine my girls growing up without a mom but I trust God enough to let him handle that.

Surgery it Is still scheduled for Wednesday and then out of nowhere this weekend I get this wicked cough. I don’t Think I have a fever since I was running around like  a little kid yesterday,  but it’s too close for comfort.  I know Dr. Williams would Put a shot in my butt but I’m not sure they’re willing here. Not sure if I am allergic to some Random flower because every thing is in bloom. It’s worse in the morning and then night. And then of course I can’t get water out of my ear so I have to make a concoction.

 We learned how to navigate universal yesterday and I had a great time. I even walked some! We navigated the bathroom, the way to get around the lower level,  how to meet every character, and get on a few rides! My favorite part was meeting Beetlejuice  on the way out. I kept  shouting Beetlejuice Beetlejuice Beetlejuice,  and we selfied  away!! Of course none of this could have been possible  without my amazing Family and my amazing team of cheerleaders.

(Of course Little Lana  wandered off but she did the right thing and found someone that worked there. She snuggled in my wheelchair and I never wanted to let go.)

 Oh my goodness. How in the world did I forget the stranger danger van? Skip  rented this is Van it’s a white van and kids Love it. They call it S D V. And talk about the suspension on this thing it’s like riding the bull ride. I actually have to hold the seat belt off my port. Well it’s time for meds so I will signing off for now. Love you also much to have made this trip with us. It’s been so much easier been no stress.  Even the kids are  getting along. I’m on day 12 Beth Moore’s Jesus 90 days of the  one and only. I don’t really remember day by day what  it is saying but I know I get what I need for that day.

boommmm

Boom that’s what my head felt like when the surgeon came in. Reviewing the scans, the mostly good news Plus the little bit of bad news which is only one % knowing I’m like .0001% at this time. They’re putting me into this trial hopefully have surgery next Thursday but that means we are on the weekend so I’ll have to say the entire weekend before they can transfer me to PT and OT. I’m not sure how that works and how long I’ll be there. My parents hung out with us as much as they could and got us lunch and and there from 8;45 until 3. long day. skip’s parents Watched the girls and them out. I think they walked a total of 6 miles which is pretty good for my kids. So we are hoping to get on the trial or we would be having surgery today and that doesn’t look likely. So another week out and I think this will be the time we go to San Francisco. Dr. K seems optimistic that we will get into this trial and come out the other side Beautifully. There are three trials going on and this is one of his. It is a phase 3 trial which means you only get four and then it can be considered for a new drug. On my blood work looks perfectly normal which we didn’t have Second Thoughts about that.  I think that is it right now sorry for the dump  comment it’s a very lovely and mom cleaned it up. You’ve been very spoiled in the past so I was cranky and passionate that I was going to call somebody. Thank you for everybody’s generosity and this fight and team Nadine rocks. We’re praying alongside you and every day is the battle but just so you know I climbed into the pier  Park Ferris wheel and it was awesome so a little hope goes a long way.

Four hours asleep and don't look like a rabbit but I'm i'm sure I if I could run around like one ☝️ would be like One that chews Gigi's plants! 

Distraction time',"hey look a bunny!" In all seriousness this place is a dump and I'm contemplating calling AEMX I'm putting a hold on the charge. I Could go on n on but need to verify one little nugget. ADA compliance. But overall disgusting. We know who won't be using AIRBNB anymore. VRBO doesn't screw you!

Rant over. 

So. In three hours time we will be making difficult decisions. Please cover us up with your holy unicorn prayers-I'm trusting You Jesus and all saints and all team Nadine warriors!

california next week

 I’d like to know that we are leaving in a week for a brain surgery procedure I don’t know all the details.

 I do know that we will pulling the children out of school and the teachers are so far all right at that.

Driving you having versus flying is up in the air right now. I’m trying to get the best possible prices my mom and dad will be there hopefully and Maggie and warren

We  could use a an apartment to get through this I have a belt who weeks recovery and another two weeks to play and visit a  friend. And this is all assuming I make it!  But they do know that Skip can’t be there by himself if something happens.

A anyways I need things for the girls to do. Disney. Universal. Legoland. just fun places that will keep their mind off of it. It  seen so much to wrap your head around one week but it’s coming together.

Pray pray pray pray I couldn’t say it more. This is my last ditch effort. My last hope. If you have any suggestions please let me know…