Strength in Weakness, Part 3

Susan:

I can’t tell you the exact moment, the exact day, but I can tell you that when Shannon told me she and Ben were going to fly to Mexico for her first Christmas with cancer in December of 2009, I was shocked and upset. It was one of those moments, as her mom, that I did not hide how I felt. I told her to please reconsider, to go just one week later, to let us go with them-- I offered many alternative suggestions. But anyone that knows Shannon knows that once that little girl had her mind made up it was as good as done. She did offer to let us go with them but the more I thought about it and got the idea of what she was going for, I backed off. I did wonder how I was going to get through Christmas without her. She was really such a big part of our little family and the only other female beside me.

So Shannon and Ben were booked on a flight to leave BWI on Sunday December 20th. To fly, Shannon had to make several different accommodations for herself. She had to bring medicine that had to be refrigerated. She had to make special arrangements with the airline to transport the medicine. Shannon had to fly with a compression sleep and glove and this would be her first time testing it out. I worried about many things.  If she swelled what would they do for her in Mexico? Also, if she got sick with any side effects what would they be able to do for her in Mexico? How would they be able to fly her back to the states if she had swelling due to the ancillary lymph node dissection?

I don’t know if Shannon gave much thought to any of that. She was not the worrier that I was, thankfully!

The first thing Shannon and Ben had to overcome was a huge snow storm. The storm began on Saturday night and continued on into Sunday the day they left. They got out of BWI right before they shut down the airport. Breathe Susan breathe! OK – on their way. I prayed hard that she had no reactions to the compression in the plane. 

Once Shannon and Ben arrived we could not call due to roaming charges and I wanted to let her find her way and get settled but she did email me to let me know they had arrived and she described the little room off the lobby where she could email and also Skype with me and her dad.

Shannon also let us know that she did not swell badly and by the time we spoke the swelling was going down. So far so good right?

During this week Shannon and Ben did many fun things. They spent time on the beach-- for Shannon this meant totally covered. They took an excursion to see ruins. They swam with dolphins and we have a picture of Shannon kissing one with her compression sleeve on. They had romantic dinners under the moonlight and tried different dishes. 

When Christmas day came I had arranged to do things differently to try to make up for her absence. Sean’s Dad, his brother Mark, Christopher, Sean and me all went to Carroll’s Creek for brunch. It was all very nice. Afterward, Christopher, Sean and me watched Sherlock Holmes with Robert Downey Jr. That night Christopher’s kids were flying in from Florida for their Christmas break weekly stay with their dad. So we had something to be excited about. But for me the highlight of that day was when we got on Skype with Shannon. I craved her female presence in our family gatherings. I did not love one of my children more than the other. But I had one very sick child in Mexico and she was my only daughter and I desperately craved her presence. After we used Skype and I laughed at her antics and funny stories I felt relaxed and ready to enjoy the rest of my family evening. Everything just felt right with the world.

Shannon probably had some type of internal bucket list or something like that. Because she was constantly reaching beyond what was expected of her. Doing for others in extraordinary ways and treating herself and her husband to an unusual but fun way to spend Christmas when you have recently been given a prognosis of 3-5 years to live. Looking back now I see so many things that she did that were daring and areas where she absolutely pushed herself beyond her physical limit.

Shannon was living her life to the fullest and enjoying each moment as if it could be her last. Her motto when she talked to me was always-- she was hoping for healing but if it was not to be so then she accepted that she might die. She was mature beyond her years and made me very proud by the example that she set. 

Strength in Weakness, Part 2

Susan: 


This is the second selfless act that I want to tell you about. It is the story of Shannon taking part in her cousins wedding in South Carolina in September of 2009.

When Shannon was diagnosed and began her treatments she was determined to be in her cousins bridal party. I actually had conversations with Shannon and it went something like this: "Shannon- don't you think this is just too much? The wedding is going to take place during your stomach shots of IL2." Shannon would just say,  "Mom I will be okay." She would say, "Somehow I am going to do this." I really felt she was grasping for something that she was not going to be able to physically do. I had already seen two months of what the IL2 did to her.

Shannon could not administer the four stomach shots of IL2 herself. Ben, Shannon's husband, had to give her the shots. It was hard on him I know but just like everything else, Ben was a tower of strength and calm for Shannon. During these treatments Shannon had all kinds of medications she had to take all night long. She would run fevers, would retain fluids, she would get the rigors, where her body shook uncontrollably. She turned bright red for days with a rash all over her face and upper body. She also would get a hard knot in her stomach that hurt and stayed hard for a very long time. She was nauseous and would vomit and have diarrhea. She would cry during the night and not be able to sleep. During these four days she could not really eat anything. So she felt sick and weak. It was a hard treatment but we had such hope in its outcome.

Shannon had worked it out with her clinical trial nurse that she would start her IL2 shots the month of the wedding on Monday, ending it on Thursday. She and Ben drove to South Carolina on Wednesday with the intention to get her down there relaxed in her hotel and so she could help her cousin with preparations.

After arriving in South Carolina she helped Lauren, her cousin, with many different things in preparation. I arrived on Friday around 2 and met her along with the bridal party at a manicure place. I took one look at Shannon and was shocked at how bad she looked. It turned my stomach. I said to her, "Shannon, are you okay?" This time Shannon actually took me aside and told me how very sick she had been. How she had been up the entire night and was the sickest she had been so far. I wanted to just take her in my arms and hold her and protect her from this vicious cancer and the treatments. But instead, we went into the salon.

That night we had the rehearsal dinner and she still prevailed and acted strong. She was so sick though. The following day she woke up and went back to work getting things ready for the wedding.

Everything turned out lovely and the wedding was so wonderful. But my little girl was so very sick through the whole thing.

Shannon's drive home also was difficult because she had not brought a pillow and had to have a seat belt cut across her stomach where she had four fresh, hurtful, hard knots. She wept going home.

Later, when my son was looking at the wedding pictures he asked me, "Mom, why does everyone look good in these pictures but Shannon?" I then told him the story. Many people might not have had a clue throughout all of this, but she was a very sick girl during this time.

I wanted to tell this because this was just another example of how Shannon was determined to not allow this cancer to keep her down. She wanted to be a part of this special time with her cousin. She managed it. I was very proud of her. I hope you all are too!