So many people know how ONE word can change your life! That ONE word can be a different ONE for each us. That ONE word can have an impact felt by many. That ONE word brings people together. That ONE word can cause sleepless nights. That ONE word can make you cry, it can also make you stronger. That ONE word can take up so much of your life. For me and my family that ONE word is cancer.
On Thursday, October 12th at 3:47pm I got a phone call. A phone call that contained that ONE word. A phone call that probably only lasted a few minutes, but felt like 20 minutes. A phone call that seemed surreal. The phone call came from the Physician Assistant at our doctor's office. She was calling to tell me the results of the biopsy done on a mole that had been removed on Monday. A mole, that we didn't think twice about.
So here's the story...
Last spring Julianne pointed out a small mole on the back of her leg. I didn't think anything of it, moles are common for many of my family members, including me. I told her let's watch it. We watched it and we didn't see much change. Fast forward to July. The mole started to get bigger, but not a huge concern. I told Julianne we would put it on the "list" of things to talk to the doctor about when we went in for her yearly check-up.
Then came her check-up. The mole had doubled in size in just over a month. Now there is some concern. The doctor looked at it and suggested we remove it. So, remove it we did. That was Monday (10/9) morning. We were told we would have the biopsy results back in 7-10 days, so imagine my surprise when the call came just 3 days later. The words I expected to hear, "The biopsy is done and everything is fine." The words I heard, "We got the biopsy results back and the mole tested positive for Malignant Melanoma." I said some words, had a short conversation and was told I would be receiving more phone calls on Friday. I sat in the chair stunned - holding it together, because the kids were watching me. I did what I felt I had to, I kept it together.
On Friday (10/13) morning the phone calls started. First, the dermatologists office confirming the diagnosis and setting up an conference call with the dermatologist for Monday. Second, the surgeons office setting up a consult for Monday for surgery that was needed. Third, our primary care doctor to get some pictures taken of the area for the dermatologist and surgeon. A good part of Friday was spent on the phone. That ONE word changed our day, changed our lives.
The weekend went on, we didn't tell Julianne anything. How do you tell a 13 year old she has just been diagnosed with cancer?!?! Julianne was her happy self - cheering on Katelyn at her softball tournament.
Sunday night came and we knew that we had to tell Julianne. We knew that ONE word would change her life, but we weren't exactly sure how that ONE word would change her life! So, we sat Julianne down and told her. I still couldn't tell you what her reaction truly was. She was exhausted from a busy weekend, so she laughed. I think she was also in shock from that ONE word! That night, she slept in our room. We probably needed the comfort of her being close to us, as she did.
Monday (10/16) morning came, we went and saw the surgeon. We talked about the diagnosis. We talked about the shock when everyone would see her file and her age. The common response was, "I read her file and it was "normal", then I saw her age and that is not." The surgeon was super-nice, asked Julianne about her interests, school and life. He explained what would be happening. He wanted to get surgery scheduled sooner than later. He wanted a PET scan done ASAP. Surgery would consist of removing an area of skin and tissue on the back of her leg where the mole had been. The goal was to get clean margins. During surgery he would also remove at least one lymph node from her groin (travel patterns of cancer to the closest lymph nodes) that would also be tested. The hope was, a "clean" PET scan, no signs of cancer in the lymph nodes and a good margin on the back of the leg. Easy enough, right?
After getting done at the surgeons office we headed home. On the way home, we got a call to schedule surgery - there was no waiting on this - the surgeon wanted it done. That was that - surgery was scheduled for October 27th. We got home, had a conference call with the dermatologist, scheduled an appointment for Julianne to meet with him and started the process of learning how that ONE word really could change our lives.
The 11 days from scheduling the surgery to the surgery were busy. There was the dermatology appointment. There was the PET scan. She had to have a pre-surgery physical. We needed to talk to the school and see what needed to be done there. Oh, and we still have 3 other kids to take care of.
Friday, October 27th came. We arrived at the hospital and off to radiology we went. Julianne needed to have radioactive liquid injected into the site where the mole had been. They needed to find the lymph node(s) to remove. I can't recall how long we were in radiology, maybe 45 minutes or an hour. It was boring, yet interesting. We got to see how they identify the lymph nodes. Once we were done in radiology, up to the surgery department we went. After just a short wait in the lobby, we were back in pre-surgery and Julianne was being prepped. Here is where that ONE word caused fear for me. What if, it was more than just the mole? What if, we had to tell Julianne it had spread? I had to put that out of my mind and know that we needed to be there, at this moment, for Julianne and not worrying about the "what ifs".
So, as we sat back in pre-op, we chatted with the nurse. Had a consult with the anesthesiologist, talked with the surgeon. Julianne was nervous, she was full of giggles. Her one big request for the surgeon was she wanted a picture of the lymph node. For the anesthesiologist she wanted to know about "falling asleep". The most challenging part for her was getting the IV. She HATES needles! As we went thru this process, I remember feeling numb. I would do anything to be in her place. My 13 year old does NOT need to deal with that ONE word.
Soon she was off to surgery. Brian and I headed down to the cafe to meet up with my mom, dad and Caroline. We sat there. Talked a bit about the morning. Talked about what we knew about the Melanoma, there it is again, that ONE word. We waited. We were told surgery would take about an hour to an hour and a half. After time passed, who knows how much, I got a call. The surgery was done and the surgeon was going to be ready to talk to us about how it went. We headed back upstairs and were taken into a consult room. I joked with Brian about what it meant to be taken into a consult room - I probably watch too many doctor shows. After about a 5 minute wait the surgeon came in. Surgery went well. He had to take a little bigger area of skin and tissue from the back of her leg than we had talked about, but he wanted to ensure clean margins. He only removed one lymph node, the sentinel node. He said Julianne would be heading to recovery and we would be able to see here in a little while. And, yes he was able to get a picture of the lymph node for her!
Back down stairs we went. Our intention was to grab some lunch before Julianne got into the recovery area where we would be able to see her. Just as I was going to get lunch, I got a call. Julianne wanted to see me. So, back upstairs I went. Julianne was awake and eating some animal crackers. She wasn't feeling too good. I encouraged her to keep eating the crackers and have a few small sips of liquid. After I got her relaxed, I left. She was still in the recovery area where it is usually just nurses and staff, but because of her age they let me come back for a few minutes. Again, back downstairs I went.
After about 15 minutes I received another call. She was in recovery where we could now stay with her. Brian went up. Soon he called and Grammy & Papa went up. Back down Grammy & Papa came. I helped load everything up and off they went with Caroline. I went back upstairs to see Julianne. When I got upstairs she was in much better spirits. Brian left to go buy crutches for Julianne. He got back to recovery and we were on our way home.
We knew that it would be 4-5 days before we go the results of any testing done from the skin/tissue and lymph node removed at surgery. While it was hard waiting, I felt as I could enjoy the weekend a little bit more not waiting for the call. You see prior to this, I would cringe when my phone rang. Was it another doctor? What appointment needed to be scheduled? Were results in?
On Tuesday morning (10/30) we got the call from the surgeon. When I heard his voice, I knew that the ONE word would continue to impact our lives. The news came that was not what we hoped for. "Brian and Becca, I'm sorry to tell you that we found Melanoma in the lymph node." My gut reaction - this can't be! The phone lines were quiet for the split second we processed it. Then the questions came. Where do we go from here? What does treatment look like? And more. The surgeon went thru what would happen if she were an adult, but she's not and so he's not sure. His honesty was welcome and appreciated when he told us, "I'm not comfortable with what the next steps usually are. You need to be at Children's." That day, I think I sat there in shock, disbelief and fear. That ONE word is changing our lives.
After news from the surgeon, I spent part of the day on the phone. I left messages for the contacts we had already made at Children's. These contacts were supposed to be for, "You had Melanoma, we removed it, here is what your future will look like." Instead those contacts became, "You have Melanoma, here is what we need to do."
On Thursday, November 2 we met with an Oncologist at Children's Hospital. Now I've been to Children's before (that's where Caroline had her surgery & observation done at), but walking into the oncology area is NOT the same. You see others that are affected by that ONE word. You see kids, little kids, who are going thru so much. It made me sad, it made me want to hug the parents/care givers, it made me angry. Why - why does this ONE word have to affect these little ones?!?!
During the appointment with the oncologist, we talked - a lot! We talked about how this came about. We talked about Julianne's surgery. We talked about family history. We talked about who would be involved in Julianne's care. At the same time we were getting lots of information and answers, we were getting lots of "I don't knows". We were in a waiting period. Waiting for new tests to be done. Waiting for the pathologists at Children's to do their own thing. Waiting, to find out what the next steps would be.
So, we waited. We waited until Julianne had a CT scan done of her chest. We waited, only an hour, and found out her chest is clear. Then we waited some more. On Friday (11/10) we headed to the surgeon's office for Julianne to get her stitches removed. While there, we got the call from the Oncologist. Results were in and the pathologist confirmed the original diagnosis. That ONE word came up again. It is Melanoma and it is in her lymph node that was removed.
So, now we move forward. Friday (11/17) we meet with the oncologist who is developing Julianne's treatment plan. We start to formulate a plan and implement the plan. On Tuesday, we meet with the oncologist who is overseeing Julianne's care. We find out how that ONE word is going to continue to impact our lives. We found out how Julianne is going to beat that ONE word.
That ONE word has forever changed our lives. That ONE word will impact many. That ONE word may cause us to shed many tears. However, that ONE word will not beat us. We will love more. We will move forward. We will support each other. That ONE word will become love. That ONE word will become victory. That ONE word will become free.
Please say prayers for Julianne, for our family. Please don't feel that you are inconveniencing us if you call or text. We appreciate every gesture, every thought, every prayer. That ONE word is going to bring us together!
