Yeah, it’s been a while. We’ve been sitting on possible next steps for a few months now, as we didn’t want to get our hopes up in case things fell through. Back in November, Dr. Laheru surprised us with the news that our case was being reviewed by the "tumor board" for possible tumor removal surgery! This was out of nowhere and we couldn’t believe it. Of course we had a dozen questions and wanted to know what this meant. He said it looked like the tumors are no longer active based on CT scans but.....

In order to be sure, we had to complete another 9-week cycle to see if there were any changes in the scans. This took us to early January and, as we prayed, the results were the same and surgery planning would commence. We still didn’t want to get our hopes up. Dr. Laheru wanted us to continue into the next 9-week cycle while plans were being drawn up. This would take us to the one year mark of the clinical, February 23rd. Still, until we had more details, we didn’t feel comfortable about letting folks know until we were sure it was going to happen.

Well, last week we met with the surgeon, Dr. Weiss, and he gave us a surgery date: April 3rd! Our surgeon is one of the best in the world and we will post more about him and the surgery in a future blog. We are only the fourth patient in the clinical to be moving onto surgery so we are truly blessed to be in this position.

Thirteen months ago, we never dreamed we would be scheduled for surgery. It’s been a long and exhausting year. So many ups and downs. With the help of family, friends, and God, we fought through adversity, tried to stay as positive as possible, and we took it one day at a time. As we have chronicled most of this in our blog, we felt it was equally important to reflect on all of the people at Johns Hopkins that have helped us along the way. Once we are off the clinical, we lose access to some of them which will be difficult since they’ve been an important part of our JH family for the past year. You don’t see many people at JH taking pictures with staff but we needed to capture them for our memories and to never forget what they have done for us.

The following photos are a step-by-step pictorial walkthrough of a typical infusion day. We are blessed to have all of them in our JH family. This year would not have been the same without each and every one of them.

Kevin, our concierge. He’s the first person we see and he really sets the tone for the day. No matter how we feel, he always manages to put a smile on our faces as we check-in. He knows you don’t want to be there but he somehow makes you feel glad you are.

Brandon, our phlebotomist. He sets up my port and draws blood. We talk about weighlifting and our families. I actually look forward to our chats while he is poking me. He’s such a great guy! Before he worked at JH, he would sit outside his house down the street and watch doctors walking to work. He said that’s what he wanted to do so he took the initiative to come into the personnel department to see what he had to do to work there. After lots of training, there he is, among only a few people that can do port access. Such an inspiration!

Dr. Laheru, the man, the myth, the legend, our doctor. We don’t meet with him that often, usually at the end of each 9-week cycle, and it’s to talk about scan results and to answer questions. We are always amazed at how he multitasks (reviewing scans, sending emails on our behalf, and looking at lab results) while we are talking with him. We would send him an email late at night or on the weekend and he usually answered within an hour! Our last meeting wasn’t about results but more about surgery so we knew it wasn’t going to be stressful. We finally got to talk about more personal things and we never realized, after a year of seeing each other, that we share an extreme love of baseball. He’ll still be our doctor now that the clinical is (almost) over and we are extremely blessed that he will be overseeing our future care.

Brad, our clinical nurse. Brad has been our main point of contact for the past year. He does it all and has been an intrinsic part of our JH family. We have to go over meds, chemo logs, schedules, test results, you name it. Sometimes we would meet him in the atrium "under the palm trees". It’s an inside joke since they aren’t there anymore but we shared many light-hearted discussions that meant a lot, especially during stressful days. Being an Eagles fan, he really didn’t want to have to put his arm around someone wearing a Redskins hoodie. The pen in his pocket has "Eagles" on it.

Katrina, our head clinical nurse. If Brad was AWOL, Katrina was our contact and she also manages the clinical nurse team. She has a wealth of knowledge and was always happy to meet with us. She was one of the reasons why we signed up for this clinical trial. JH seems to just hire the best people!

Roz and Jaz, our infusion technicians. Once we get upstairs, we wait for our infusion appointment. Either Roz or Jaz would call us back for vitals and the port hookup to the IV machine. As you might guess, we pick on each other, laugh and hug. They always are genuinely happy to see us and they take care of us for the 5 hours we are there.

We have had many infusion nurses over the past year. We still need to get a couple more pictures but they are all a huge asset to JH. No matter who administers the infusion, each of them are knowledgeable and personable. No detail is unchecked and it’s amazing that they can do this at such a high level for the patients they have, each and everyday they are there.

Mary Ellen, our first nurse. She administered the first infusion a year ago and a few more afterwards. We hold her dear to our hearts as she guided us through a very scary first day and set a positive tone for the many infusions ahead. Mary Ellen took a special interest in us from the very beginning and would make sure were were taken care of, even when she wasn’t our infusion nurse. She also took the first picture of us in our day bed. Mary Ellen, like some other nurses, was moved to other PODs early in the year so we didn’t get to see her as often, but we were always happy when she got a chance to pop in and visit.

Kim, our head nurse. She, along with Allison, administered the most infusions and we were so fortunate to have her. Kim just takes charge of everything and if there is ever a glitch, she is on it. During our pre-infusion meetings, she seems to know more about what’s going on with me than we do based on the prep work she does. We can’t say enough about her. Her nickname though is "Kim the Ripper", as she shows no mercy when removing the tape around the port access bandage. One of my todo items before leaving in the morning to go to infusion is "shave chest hairs in case Kim is my nurse". 😉

Allison, our top infusion nurse. Allison administered more of my infusions than any other nurse!! She is amazing and is one of our JH favorites. She’s always upbeat, happy, and knowledgeable about any questions we may have. We share a lot of laughs, especially when she has to treat me and our other infusion friend, Barry. I sometimes felt sorry she had to deal with both of us at the same time.

Medora, our non-Thursday nurse. Medora is Dr. Laheru’s clinical nurse but she doesn’t work on Thursdays (our regular infusion day) except when filling in for Kim or Allison. It was always a nice surprise when her name showed up on the schedule for us as we don’t get to see her much. As you might expect, she is top notch, like Dr. Laheru.

McKayla, our never nurse. The one time she treated us was when we she was working the late shift and we were the last patients left, late on a Friday night. But McKayla is part of our nurse family also as she is always there to greet us with a smile on her face. She also treats and takes great care of my good friend, Paul Baba. Paul and I are friends from a number of years ago when our kids were in a running club together.