Never Alone

Well I am writing to you tonight a much calmer version of myself vs. the demon I felt (by felt I mean know) I was earlier this week. 

Remember how last week we were informed that the results would be in by Tuesday and we were to call to double check? Well Dad called Jill around noon Tuesday and she let him know she was going to find out and call him back. A few hours later Jennifer, who processes the lab send outs, called Dad to let him know that the results were not going to be in that day. She also informed him that the tests had been sent to a lab in California and would probably not be in until Wednesday afternoon or Thursday morning. This is when demon Layne took over...sorry to everyone that encountered me in any realm this week...

We were honestly all at a loss. After the glimpse of hope that Mike had given us last week about this being taken care of, well it was all out the window. Mom is good friends with the CFO of Banner and he had already been caught up on Dad's situation, but Mom asked him to wait to intervene until we saw how last week's communication with Mike played out. (Terrible run on sentence- forgive me Kristen) Tuesday, she asked him to intervene and boy was he on it. Within an HOUR all of the "key players" of MD Anderson were involved. Mike, the CEO of MD Anderson, Jeff, and every director of every department involved in the situation were working together to figure out what they needed to do to rectify the issue at hand.

This morning I had received a call from Mike. As always, we had a great conversation. He let me know how sorry he was this has happened and he knows that a million sorry's couldn't change what has happened. Unfortunately everything that could have gone wrong in this process did but he put together a timeline of events from the date of the biopsy through today. Here is the timeline that Mike emailed me:

9/5/12  -  O. J. Alexander’s procedure; the fine needle specimen was obtained.
9/10 /12 - Dr. Perry reviewed the case and additional stains were ordered.
9/12/12  - Dr. Pargman reviewed the case with special stains and upon discussion with Dr. Klueppelberg he asked for an EGFR and ALK by FISH  be sent out.
9/13/12  - The order was placed by Dr. Klueppelberg.  We must have an order to process the specimen for send out.   The blocks were requested to be sent to us from SQL for the additional testing.
9/17/12 - The blocks were received. The two tests are sent to Response Genetics laboratory in California and take approximately 10 days to 2 weeks to perform and get results returned to us at Gateway.
9/20/12 – Specimen taken to dock and sent via Fed Ex to Response Genetics
9/24/12 -  Fed Ex specimen pick up did not occur until this date.  Delay in pick up from Gateway dock under investigation.
10/3/12 – Results expected from Response Genetics.

He talked it through with me and we both agreed the communication was the biggest issue at hand. The timeline of events did NOT mirror what Jill had been communicating to us in the least bit. As we finished our conversation he let me know he really wanted to speak with Dad but wanted my input on how he was doing and if he wanted to talk. I literally laughed and told him Dad has been the most positive and non-crazy out of all of us! They spoke soon after our conversation and it went well. 

So back to the timeline. I must have read it 25 times now. Here are my issues:
1. I'm sorry (but really I'm not), but DO NOT tell someone something just to tell them. Which is what Jill has been doing the last month.
2. If you don't have the facts, be honest with your patient and own up to it. People appreciate honesty more than smoke being blown up their rear. 
3. Four days. Dad's specimen sat on the dock for. four. days...four days. Climate and time sensitive goods just sitting for four days. Hopefully those slides are good...

Ok demon Layne could go on for an hour about her frustrations but I will spare you. Bottom line is they truly got their crap together and we are seeing the light at the end of the tunnel. Dr. K called Dad right after he got off the phone with Mike. Dr. K apologized multiple times and Dad could hear the disappointment in his voice of all that had gone wrong through this. Dr. K said that next week the results will be in on the 3rd (as stated on the timeline) and we will meet with him on the morning of the 5th. Immediately following that appointment Dad will go up for treatment.

With all of the anger, frustration, and confusion the last few weeks have brought, I am so grateful to see that there are still people at MD Anderson that will drop what ever they are doing to assist the needs of a patient. The efforts of Mike and his team have really brought demon Layne down 5 notches and I think all of us are feeling a lot better now that we know exactly what is going on (for real this time). This last few weeks have really shown how united team-OJ is and how through the ups and downs Dad is never alone in this fight. We love you Daddy, fighting for you always!

Well, I have to be honest
As much as I want it
I'm not gonna promise the cold winds won't blow
So when hard times have found you
And your fears surround you
Wrap my love around you
You're never alone

-Lady Antebellum "Never Alone"

Alexander-Land

Hi all!

It has been quite the few weeks here in Alexander-land. Dad was scheduled for his biopsy on this adrenal tumor on the 5th. Dad had to be there at 630 am to check in...but we got there and realized we never asked where "there" was. It was clearly not MD Anderson because the security guard was not about to let us in anytime soon so we made our way to Banner Gateway where we were thankfully supposed to be. Cindy and I got to go back with him until they wheeled him back...and let me tell you, he was lookin GOOD!

The biopsy was a CT guided needle biopsy where they basically use the CT scan to make sure the needle has obtained the tumor cells needed. The procedure took a little over an hour, but then he had to sit in recovery for two hours. Don't worry, he tried to sweet talk to nurses into letting him out early about 5 minutes into recovery.

Dad munchin on graham crackers and coke in recovery

5 minutes later we were out!

Dad was nice enough to share

 

Once released, Dad could hardly feel the spot where they did the biopsy unless he sat down forcefully. Woot!

Uncle John flew in last Monday night which is always exciting for us! Dad and Uncle John played golf on Tuesday for Cunningham's birthday and they had a great time especially since the weather has cooled off!

Well, Wednesday rolled around and we got a call in the morning from Jill, our nurse navigator. She was calling to let us know that the biopsy results were not ready and we were going to have to reschedule for next week. WHAT! We were all really confused so we got a hold of Jill again to ask why (in worries they had found something they weren't telling us and needed to do more tests). She let us know that they are specialized tests that take longer and they shouldn't have scheduled the appointment for that day in the first place. Although frustrated for the lack of notice, communication and answers we realized we couldn't do much other than feast and wait until this week. 

Dinner after the appointment cancellation

Uncle John flew back into town this week (we seriously could get used to him being here!) for yesterday's appointment. Dad got a call from Jill the nurse navigator letting him know that the test results were still not back and that we should call back Tuesday to see if they are done. Excuse me? They aren't done? WE have to call? Oh boy were my insides burning. I was actually already at MD Anderson yesterday getting some school work done so I packed up my things and went to get some answers...shout out to all who were the innocent bystanders during this process...

To make a long story short I had gotten a hold of the biopsy results and tracked down Jill to ask why I was holding results in my hand yet they were saying the results weren't done. She informed me that I was holding the preliminary biopsy results and they need to do tests on the tumor cells to determine the best "chemo cocktail" to target the tumors. She proceeded to tell me that they actually haven't even started the tests because the lab is so backed up with other labs.

I completely lost it and was so angry and frustrated that a lack of man power was what was keeping my Dad from getting treatment. I can completely understand that things happen and if they needed a few extra days, fine...but TWO WEEKS!? Absolutely inexcusable not just for my Dad but for any patient. These patients are here fighting for their life so to have just wasted two weeks of time over an issue such as this completely infuriated me.

I left MD Anderson with a lot less hope in the staff than I had going in so I contacted Mike, the Administrator of Banner MD Anderson/Gateway that we had breakfast with a few months ago, to make him aware of the situation in hopes he could fix this problem for future patients. Today, I received both a phone call and an email from Mike. He was completely appalled and said lack of employees should not be and is not an issue because he has the funding to hire many more if needed. Without going into full details of the conversation I will say we had a great chat and he is going to be following up with me tomorrow after he gets to the bottom of the situation. Next week we WILL have results and we WILL have a new treatment plan for Dad...stay tuned folks.

Other fun stuff that has been going on in Alexander-land? Dad is the mass intention for the 8pm mass at the ASU Newman Center for the month of September! I can't even put into words how incredible it is to hear Dad's name be called as the mass intention knowing that everyone in the church at that moment is praying for him. Dad and Cindy attended with me this past Sunday and it was one of my most special memories! If anyone wants to join me 9/23 or 9/30, let me know :)

Also, Dad is going to start volunteering as a golf coach for the Mountain Pointe Girl's Golf Team!!!! I AM SO EXCITED THIS IS FINALLY HAPPENING! I had been trying since July to get in contact with the DV Athletics Director, with no response, but I finally heard from the MP coaches last week. Dad met with Pete Monday and he is going to start the paperwork tomorrow so he can help out the tail end of the season and the off season!! Dad is so great with kids, loves golf, and just so happens to be not working so it was just a no brainier on how perfect this would be!

Through all the frustrations we are still so incredibly blessed and I know God has a great, great plan ahead for Dad. Thank you all for your continued prayers and support, it always means so much! Will keep you posted on how next week goes!

On to Plan B

Hi all! Well it has been a pretty uneventful few weeks! Dad has been feeling really great and been getting out on the golf course alot. It has been so hot in Arizona though I don't know how he doesn't melt to death.

Him and I also went shooting (or as Dad likes to say.."pop some caps") last week which was so much fun! He hadn't shot a gun since he was in the Navy but let me tell ya, Dad still has it!

Yesterday was CT Scan day. We were all wondering if the dye he has to drink before would taste as bad since he isn't getting as nauseous...well it still tastes terrible haha dangit.

Today we met with Dr. K to review the results of the Scan...here are the deets:

• The main lung tumor shrunk 2mm...not as significant as last time, but progress is progress.
• There are what the call "satellite nodules" or lesions appearing in the upper left lung near the main tumor. They are about the size of a piece of rice and they aren't sure if they are related to the cancer or if they are signs of an infection. Dr. K said Valley Fever was a possibility so he got tested for that today. We cant biopsy them because they are so small so it is more of a waiting game to see if they change.
• The tumor (actually we aren't completely sure its a tumor, the report says metastasis so we will go with that) on the adrenal gland grew from 1.3x1.1 cm to 3.0x2.3 cm. This was a big concern for Dr. K obviously so he said no chemo for Dad today. Dad will get a biopsy done over labor day weekend and since Avastin (chemo drug) promotes bleeding Dr. K wants it out of Dads system for a month. 
• His labs look really good with the exception of an elevated white blood cell count which means his body is fighting something!

So what now? Well when they do the biopsy they will test for the lung cancer gene to see if it is related to the lung cancer. If it isn't, they will start a new chemo plan that will hopefully work better.  He also let us know of a few other options including two oral drugs and an experimental study that has proved great success at TGen (Translational Genomics Research Institute). Radiation isn't an option because Dad needs whats called systemic treatment which means treatment that targets the whole body, not just one location which radiation does. We are also going to start scanning every 2 months instead of 3 so we can see change without it being too early or too long.

As of right now Dad is scheduled for the biopsy on the 3rd (yes that is labor day, yes they are closed, yes that date might just have to change) and meeting with Dr. K on the 14th to figure out what plan B is! 

Everyone, especially Dad, is doing well. We have a TON of hope and faith in Dad's team and know they are providing the absolute best care they can! All we can do is take it one day at a time and keep doing all that we have been doing! Please keep Dad and his medical team in your prayers, and if you have time leave him some sugar below :) We will keep you updated, have a great week!

Live For The Moment

Hello! I am writing to you from my new cable-less, ethernet cable savy apartment...It's very "starving college student" if I do say so myself. I am sure many of you can't even imagine what this world feels like anymore, but my roommate and I think it is pretty awesome. It has been a busy, but wonderful, three weeks! Dad's melanoma surgery went great! We were and continue to be impressed with Dr. Griego's work. He got all of the melanoma the first time and Dad's scar is healing really well. He was pretty sore for about a week but is back to a painless world now. I wanted to post the pictures, so if you have a queezy stomach...scroll down quickly :)

This is Dad's face after the melanoma was cut out. They left it open for a day (covered by a bandage of course) before they stitched it.

This is the stiching! Right off the bat you could barely see it! There are three layers of stitches that will dissolve in the next 3 months. 

Here is Dad just two weeks later! Can you tell?!

Dad and Cindy went up to Portland last week to visit Cindy's daughter and family. They had such a great time going to the beach, the fair, and everything in between!

Regan, Dad, and little Maddie...she is so cute!

My sister Kristen has also returned home from her two month adventure in Scotland, Ireland, and London. We were so ready to have her home & it is so great to have the whole family back together!

Chemo yesterday went well...for the most part. They changed their procedures so now when we get to MD Anderson for blood work, the nurse will place the IV in the port and draw the blood from there. Previously they drew blood from his arm and Cristine, our chemo nurse, administered the IV in his port. Well poor Dad came out with watery eyes and said that it really hurt. He asked the nurse if she had done a port before and she said "Well, I did one this morning". Hopefully she can get her act together in the next three weeks!

Dr. K said all was well and he was really happy with Dad's scar on his face! He also let us know that he planned his next vacation around Dad's schedule. I think he learned his lesson from his last vacation...We aren't difficult I swear! We will get to do another CT scan on 8/20 to see the current progress. Chemo went great as usual. Dad got a little stomach queezy but only for a little bit. Then, of course, we feasted after!

I feel very blessed on multiple levels, including that Cristine our chemo nurse has inspired me to go back to school and become and oncology nurse! God has been putting this on my heart the last few months so I finally buckled down and I start school August 20th! I'm sharing this with you all as a reminder to LIVE FOR THE MOMENT! Do what you love, life is so short to let worry get in the way of what you truly love and want to do. Even in the face of a negative experience, there is something greater that will come out of it. Thanks for your continued prayers, we appreciate you all from the bottom of our heart!

As if Lung Cancer Wasn't Enough

Happy Thursday! Well Dad and I had the most incredible time in Colorado! I feel so blessed to have such a close family, it makes family visits that much more fun, but leaving that much harder :) We were so glad to get together with the whole family for dinner one night, but of course there was no group picture! Sorry Nan!

Dad and I!

Dad & Blake!

My cousin Aaron's son Andre...he is so big now!

 I wanted to post real quick a heartfelt thank you to Denise and her New Life church group, Small Acts of Kindness. They handmade the most BEAUTIFUL quilt for Dad! The stitching has hearts around the whole quilt and well it is just the most gorgeous quilt I have ever seen. They make quilts for people and children that are sick, in the hospital, or going through a tough time. When they hear of a person in need they make a quilt, pray over it, and send it to that person. They truly are using their God given gifts to add brightness to peoples' day who may need a little lift. Thank you SO much Denise, Dad loves it!

I made it big so you could see the heart stitching! SO amazing!

Well, last week Dad went to the dermatologist to get a spot on his arm checked out. The dermatologist looked at it, and said "Oh you're just getting old." (haha) but she did want to check out the birthmark on his face. They did a biopsy and it came back positive for melanoma (skin cancer). Thankfully its only stage one so all he needs is surgery and it will be taken care of. Clearly Dad is just getting all of this cancer stuff out of the way at once! We looked at the plastic surgeons website and it is absolutely incredible the work he does! If you are curious like we all were check it out here. Next Monday he will go in for a 6 hour surgery to remove the melanoma. We think the doctor should just do a face lift while he's in there...just kidding!

Regardless of the news yesterday, chemo was filled with SO many laughs yesterday! Jess was able to join us for chemo even though she just got back from Spain the night before! We got to talk to the nurse a lot about the melanoma and then his nausea (which he had about every 10 days..more of a allergic reaction to certain foods vs. constant chemo nausea) and what other medicines he can take for it. The nurse also mentioned about having to wear a lot of sunscreen and a hat while playing golf...and that maybe he should look into a safari looking brimmed hat... Dad immediately got a sad look and said "that's gay" and the laughter would not stop! The final decision was for him to get a personal assistant to hold an umbrella over his head while walking through the course... I guess safari hats aren't cool!

When we met with Dr. K the first thing he said was "As if lung cancer wasn't enough". He wanted to skip the chemo drug avastin today as it isnt the best for healing (it promotes blood flow so the cut [...totally blanking on the scientific term, its early...] on his face wouldnt be able to clot and heal normally). Other than that he said Dad is doing great and has gained a whole 5 pounds since we started the maintenance chemo. 

Chemo was really short, i mean I think we were in there for maybe 40 minutes...we almost beat the lunch cart out! Dad also got a B12 shot yesterday alongside his chemo.

The Post-Chemo Picture

Even through lung cancer and now melanoma, Dad is still so positive and living life like nothing has changed! He is such an inspiration and I am so very proud of him. Thank you all for your continued support and prayers they mean so much to us!

“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
― Emily Dickinson

King of the Hospital

Hi all! Hope all is well with you and summer has been full of fun and adventure! I did want to start by wishing all the fathers out there a happy belated fathers day! Dad and I had a great day celebrating (we missed my sister though-she is in Europe!)...we saw Rock of Ages and ate a wonderful dinner at Outback! I am so blessed to have such an incredible Dad to share not only fathers day with, but every day life! I thought I'd share a little blast from the past in honor of the best Dad in the world!

Well Dad handled the first maintenance chemo pretty well, his energy was definitely better than when he had the cisplatin! The only bad part was the night he got food poisoning...poor guy!

Dad, Cindy, and I went in for bloodwork, a visit with Dr. K, and chemo last Wednesday. After bloodwork we had about an hour to kill so we decided to grab coffee and breakfast at the cute little bistro in the hospital. When we sat down the Administrator of the hospital asked if he could join us and ask Dad about his experience! He was so nice and it was great being able to talk to him and share with him our complete honest feelings on our experience. Of course we LOVE MD Anderson but we were very vocal in our feelings on their Nurse Navigator program. If any of you Arizonians have seen the commercials for MD, they say something along the lines of "and a nurse navigator will be with you every step of the way". Well that is not the case, as we have seen ours once...in February...And when we did try to call her for a question on his meds she was NOT happy we were calling. Anyway, it was a great conversation and he appreciated our feedback as he is revamping a few things including the nurse navigator program.

Meeting with Dr. K went really well! He was in a really good mood haha I think we were a little caught of guard with the amount of his talkativeness. None the less, great appointment and he was very pleased with Dads energy AND the fact he gained four pounds! You can call him fatty now.

Chemo went great as well! Christine was our nurse again thank the lord since 1. we love her and 2. I heard a nurse come ask her for IV help...as if we will ever let Dad go through that again! Chemo flies by now, we were in and out in two hours! When we were leaving I actually felt like we were at home considering Dad gave Christine a big hug, I blew her a kiss, and Dad said I love you to the blood work receptionist, Juanita. Pretty soon, Dad will be King of MD Anderson! Who am I kidding...he already is!

Talking to Michael, notice the rainbow :)

We all decided to wear our salmon colors Wednesday..Great minds think alike! I also love this picture of Dad!

MMM Lunch :)

Well we are jet setting to Colorado this week to see our wonderful family and I could not be more excited! Have a great week, we love you all!

The Port Life

TGIF! What an eventful two days it has been for Team OJ! Yesterday Dad went in for a quick surgery to get his port placed (and don't worry, today's updated comes with many show and tell pictures). After we checked in they took Dad back right away to get blood and let him get changed into his sweet outfit:

The procedure itself was less than an hour, and he was awake the whole time! He did have a drug that made him a little less coherent, but we will just say that he was awake...it adds to his toughness :)

This is what Dad's chest looks like with the port! We were all wondering where the stitches were but the incision is held together with glue not stitches (medicine is so amazing!). He had to wait in the recovery room for an hour and kept trying to charm the nurses to lessen the amount of time he had to sit there...didn't work this time! But it gave us time to look at the reading material they gave us:

This is what the port looks like under the skin

This is the device they use to access the port, the needle goes through the skin and into the port

Here is a combined view. The catheter actually goes from the port, up by his neck and then ends right above the right atrium of the heart.

 

Yesterday was also a first! Go in for surgery, come out and get a parking ticket. When we had arrived in the morning Dad accidentally used the "ambulance only" entrance, and got a ticket for it! At least it was only a warning :)

It was just Dad and I today for chemo...I think some of the nurses didn't realize it was Dad because there wasn't a whole posse accompanying him. Just kidding, they could never forget him! Our favorite nurse Kristine was our nurse again, and let me tell you...she is bomb.com! It is so comforting to have a nurse that has been in oncology for so long, she knows so much and knows exactly how to utilize the port (you would think every nurse would be able to, but after Dad's experience with nurses not being good at finding his veins, we knew that probably isn't the case). Also, the needle that is inserted into the port...that thing doesn't mess around, it's huge!!

Kristine and Dad...She has to freeze the skin over the port so it doesn't hurt when the needle goes in

Sorry this one is so hard to see, but right above the teal circle is where the needle is hooked into the port just like the diagram above.

We were there for about two hours, which was a cake walk compared to the last four chemo's! Dad was such a trooper and was in great spirits and energy the rest of the day so we had a mini father daughter date where we stuffed our face with Chipotle, went shopping, and I graced him with my angelic singing voice in the car. Dad gets a three week break, but I think he is going to need to find a new hobby because he can't golf for a at least a week! Thank you all for your continued love, support, and prayers! Have a wonderful weekend!