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!