Friday, January 7, 2011

A time to feast

My hiatus from writing has not definitely not been for lack of material. The last few months have been filled with several joyful holidays, lots of chemotherapy, a wedding, and two trips to Wild West. I would suggest before reading any further to get up, go to the kitchen and get a snack and a drink because this will be a long one.


Now that you are back, here is the update.

After our last trip to MD Anderson, Patrick was placed on a chemotherapy schedule of two drugs - Taxatere and Cisplatin. He had treatment every three weeks. Treatment day started first thing in the morning on Wednesdays. The infusion of the drugs took between 6 to 8 hours. The following day we would return to SC Oncology for around 4 hours of IV fluids and a shot that stimulates the bone marrow to produce white blood cells to help stave off infection. On Wednesdays and Thursdays Patrick did very well, but with Friday came the horrible side effect that people imagine when they think of chemo. For the next few days Patrick was plagued by nausea, vomiting, pain, exhaustion and much more. He would get up 5 or 6 times a night either in pain or to throw up. I haven't slept as lightly since Cameron was an infant. If Patrick gets up or takes an off breath I am wide awake, which has caught up on me. People ask me often "How are you?" The polite and Southern lady answer is "Hanging in there" but the honest answer is "Absolutely exhausted." Most days I would give a kidney for a nap. Not a cat nap, but a really good nap. The kinds of nap that you had when you were a kid who would fight a nap like a pole cat. The kind of nap that you wake up refreshed and a little sweaty from sleeping so hard. That is the kind of nap I want. It is on my long lists of things I will get to - eventually. It would be very easy for me to fill an entire page with the horrors of chemo. All of the things that you have thought, heard, or imagined are more than likely accurate. Chemo is a poison that makes you better by nearly killing you. Our hope was that the chemo would begin to shrink the tumors, but it would be several months of treatment before we would know.

October brought one of my favorite holidays - Halloween. Most years I have my costume planned out months in advance, and my sisters and I spend weeks picking fabrics, sewing and detailing. Last year Cameron and I were a lion and a lion tamer. I spent nearly 9 hours hand beading my lion tamer jacket. That is how much our family loves Halloween. With taking care of Patrick and Cameron and working, I wasn't able to get into Halloween mode this year. Patrick's mom came into town to help out the week of Halloween. Patrick asked Cameron what she wanted to dress up as, and of course she said "Dora the Explorer." While I was at work Patrick and his mom went to the store and looked for a Dora costume, only to find nothing that met his standards. When I came home from work my kitchen table looked like the art table at Vacation Bible School. There was glitter, hot glue, and little pieces of art foam everywhere. Out of the sea of art supplies Patrick pulled out a perfectly made rendition of "Backpack." Cameron was beside herself! Patrick had also made "Adventure stars," "Map," and bought her Boots the monkey, and a little black wig. Her costume was for lack of a better word, perfection. She strutted around the neighborhood, and I was just as proud as a peacock. I mean that literally, I dressed up as a peacock. Cameron insisted on calling me a turkey for the first half of the trip through the neighborhood, but I was finally able to convince her that I was indeed a graceful bird rather than a delicious one.

November brought many things to be thankful for. My twin sister Rebecca and her now husband Ellis had been engaged for awhile when they heard about "The USC Love Story." The hotel and hospitality program at the University of South Carolina gives a family a wedding every year. Interested couples write an essay on why they should win, and the lucky couple wins a dream wedding. Rebecca wrote a beautiful essay about Patrick and Cameron. She said that she didn't want Patrick to miss the opportunity to walk Cameron down the isle. It was so moving and sweet that it brought me to tears. Apparently I was not the only one because the students in the wedding planning class said that they all cried and didn't even read any of the other entries. They were married on Sunday, November 14th (which was also my mother's birthday!). Unfortunately Patrick had chemo the week of the wedding, so the weekend was a struggle for him. The rehearsal dinner was on Friday, and before the meal, Rebecca asked Cameron to ask the blessing. Normally her grace is "Thank the Lord for dinner. Amen." (Daddy taught her that one.), but at school they sing a little song before they eat. I held her and took her to the front of a room filled with family, students, and friends. She began to sing very softly and so I whispered in her ear "You have to sing louder so everyone can hear you." Then she began to sing at the top of her lungs. "Thank you Father. Thank you Father. For my food. For my food. All the Father's blessings. All the Father's blessings. Come from you. Come from you. Amen." From the mouths of babes. There was a unison sigh of "Awwww." and people began to clap. Cameron, the modest one that she is said, "No clapping. No clapping." I laughed until I nearly busted a stitch. Even before the rehearsal, Patrick was feeling the effects of his treatment. He was very weak and nauseated. During the meal Patrick said the most powerful, poignant, powerful thing I have heard him (or anyone else for that matter) say. One of the guests (who I will allow to remain nameless) was talking to Patrick about his illness and how he was doing. Then this guest asked what I felt like was a totally inappropriate question for such a venue. "Aren't you mad at God all the time?" There were several people at the tab, and I was talking with my best friend Amie (I have known her since kindergarten and she is STILL one of my dearest friends. How many people can say that?), and we both overheard the question. Now we have know each other so long that we were able to "talk to each other" while in truth we were listening to the conversation between Patrick and this guest. Patrick's reply was the most amazing statement of strength of faith that I have EVER heard. "How could I be mad at God. I have so many blessings in my life. I have an awesome family, supportive friends, and a beautiful little girl. I am not afraid to die. I am afraid of what I am going to miss, but I know that one day I'll see her again. I am not afraid." Amie and I looked at each other and I could see in her eyes that she felt the exact same way I did - the simultaneous feeling of shear amazement and urge to vomit. "I'm not afraid." It rung in my ears like a gunshot "I am not afraid." That makes one of us, because I am scared to death. (A poor euphemism I know, but true) I sat there speechless (and for those of you that know me, know that it takes an act of Congress to do that) in total awe of him. I don't think I was the only one. After we ate we ran through the ceremony. Just seeing Patrick practice walking his little girl down the isle choked up everyone in the room. He walked her in, then she came and stood by me while Patrick sat down by my mother. As we stood up holding our beer flowers (one of the students said that we needed something to hold in lue of flowers, so she got all of us a glass of beer. Very good idea.) and getting directions from the wedding director, Patrick got up and stepped to the bathroom. As he was standing up I caught his eye, and I knew he was getting up with intent. I gave him a few moments, and then quietly handed my beer to the stand in bride and went into the men's room. Walking in I heard Patrick heaving violently. I saw the soles of his shoes underneath a stall door. I pulled the door open and rubbed his back while he heaved. He was huddled over the commode and beads of sweat broke out on his brow. As I rubbed his back I could hear his voice ringing in my ears, "I am not afraid."

Sunday brought the wedding, which was stunning to say the least. The wedding was on a yacht and catered by one of the most delicious places in town. Rebecca was radiant and her hair, dress and makeup sung of old Hollywood glamor. Getting ready was a production. There were make up people, hair people, dress steaming people, driving us around people, …. there were people everywhere. After getting all dolled up, the girls headed to a houseboat that was moored beside the yacht. We got our dresses on, and waited on the men to arrive. When Patrick got there, he looked weak, but extremely handsome in his tux. Seeing him walk her down the isle helping her sprinkle her flowers was a moment that I will never forget. I was overwhelmed with so many emotions, primarily love and joy. He was walking our little girl down the isle. He wasn't giving her away, but really, what father ever truly gives his little girl away. Patrick wasn't able to stay for the reception, so his father took him home. The boat toured the lake during the reception. I can't remember the last time that I went out with the girls, much less went out dancing. I danced from the time the DJ started the music until the boat docked. it was such a release. I am sure that some there may have thought that I had had a drink to many, but they would be wrong. I didn't stop long enough to drink. I didn't eat. I didn't really talk with anyone. I just danced. It was an amazing day. When I got home Patrick was in bed. I slipped Cameron out of her flower girl dress without waking her and put her in the bed. I put on some pajamas, and slipped in the bed beside them both. I rubbed his back, kissed Cameron on the head, and again his words rang in my ears. "I am not afraid." I went sleep with those words.

Thanksgiving was filled with lots of food, fun, and family. Fortunately Patrick wasn't scheduled for chemo until the week after Thanksgiving, so he was able to really enjoy the pleasure of Thanksgiving. Thanksgiving is my favorite holiday of all. It is time to gather with family, enjoy each other's company, and eat. Then nap and eat some more. There is no pressure, no stress, and no last minute running to grab that gift you forgot to buy. It is just about being together and loving the ones you are with. I love love LOVE Thanksgiving. We celebrated with Patrick's family on Thanksgiving Day. Patrick and his dad fried a turkey and grilled ribs in the yard, while his mom and I worked in the kitchen. My parents came over and then Patrick's brother Shep, his wife, and their three boys. Cameron, Hunter, Avery and Jentzen played in the living room while the adults drank coffee in the kitchen. When dinner was ready the kids circled up at the small table in the kitchen. We all ate and laughed and reveled in the joy of togetherness. Friday we celebrated at my mom's house. We had 14 at the house (I think. I was in a Turkey daze), and the small kids table from the day before transformed into an enormous kids table that filled the entire porch. The family that we were born with and the family that we were lucky to add along the way ate until our eyes bulged. One of the biggest lessons of our journey through cancer is to live in the now. In the back of my mind I knew that Patrick would probably have a very hard night because of all of the activity of the day, and that the following week would bring treatment, but that was for another time. The now was filled with smiles, laughs, and cranberry sauce.

The Monday after Thanksgiving, Patrick and I flew out to Tulsa, Oklahoma to get an opinion from The Cancer Treatment Centers of America. He had a good family friend who went out there with very positive results. His team in Columbia told Patrick that they would support Patrick in whatever decision that me made, but they thought that it may not be worth the while. As with most things in our life, my plan is to support Patrick in whatever he feels is the right thing, so he got things lined up and CTCA flew us out there. I know that all health care providers have their strengths and weakness. People should see themselves as healthcare consumers - you seek out the care that works for you. When we got to the airport they had a car waiting on us at the airport, and everyone was extremely nice. It looked more like a hotel than a hospital. Everyone was so nice. They remembered your name after only talking with you once. They helped you carry you paperwork from exam room to exam room. Did I mention that they were very nice. Maybe I have become cynical in my old age, but they seemed too nice. Stepford wife nice. There was virtually no waiting on your appointments which was refreshing, but after getting their suggested treatment plan, we both knew that they did not have the background or expertise to work on Patrick's treatment. If the suggested plan wasn't enough, then they administered his scheduled chemo, and all hell broke loose. They didn't want to give him his normal chemo to start with. They wanted us to jump on board with the plan that they had come up with, and throw what we had been doing to the wayside. We told them that he WOULD be getting his chemo, and that before we made any decisions to change his treatment plan, we would run it by his doctors in Houston and in Columbia. The doctors seemed irritated by this, which really put a nasty taste in my mouth. As mentioned before, Patrick's chemo takes 8 hours on one day and around 4 hours the following day. In spite of us telling them multiple times, they pushed his chemo in less than 4 hours. They gave him one liter of fluids the following day which is less than half of what he normally gets on day two. After his fluids we flew home. Right before we landed in Columbia, Patrick started feeling VERY bad. That night he threw up so violently that it was frightening. By the first of the week Patrick was so bad off that I called his parents to come up and help me. He was in constant pain, throwing up for nearly two weeks, and other side effects that could have easily been avoided if the people at CTCA had just listened to us. Their unwillingness to listen to the patient, led to nearly a month of suffering for our family. I won't make a glaring generalization about their facility. I am sure that they do a lot of good for a lot of people, but for us, they did much more harm than good. I wouldn't recommend them to someone in our situation.

With December brought even more celebrations. In spite of how sick Patrick was, he decided that he wanted to take Cameron to The Lights at the Zoo at Riverbanks. We bundled up, and Patrick, Ms. Noonie, Mr. Bill, Cameron, and I packed the car. When we got there, Patrick got a wheelchair, and I put Cameron in the stroller. Mr. Bill pushed Patrick, and I pushed Cameron and off we went to see the great light display. Low and behold who do we see? Santa Clause was at the zoo! Cameron was VERY excited. I stood in line, and talked with Cameron about what she was going to ask Santa for Christmas. She very eagerly climbed into Santa's lap and proudly said, "I want a cat, and I am going to name her Abigail." Santa looked at me with a shocked look on his face and replied, "She is awful little, but she has it all figured out." Santa told Cameron that he would see what he could do, but cats are sometimes hard to come by. Thanks Santa! We got some hot chocolate, looked at the animals that were still awake, and sang Christmas songs as we walked around. Patrick said that he didn't really feel like going, but he wanted to build memories with me and Cameron. It was a wonderful gift.

On the weekend before Christmas we went down to celebrate Christmas with Patrick's family. On Friday night, Patrick's home church had it's Christmas program. There was a nativity filled with children in homemade costumes. There was a black and white cow who had blonde pig tails, a wise man with a tin foil crown, and baby Jesus was given a bottle halfway through Silent Night. It was precious. After the program, the church had a big dinner and they gave gifts to the children. Cameron played with some of the other children in the church, running around, and laughing without a care in the world. She and the little turtle dove from the manger scene sang songs and danced for the longest time. The following day was the Stone Family Christmas get together. Patrick's dad is one of ten, and all of his siblings, their children, grandchildren, and a few great-grands go to Patrick's grandmother's house for a big dinner. The last two years it has rained the day of the dinner, and this year was no exception. Last year the men of the family spent more time trying to get the cars that had bogged down in Grandma Gracie's yard out of the mud than they did eating. Patrick and his brother ended up covered in mud. To limit the manual labor and to trim down the dry-cleaning bills, the family moved the celebration to the church. Once again Cameron found a little gaggle of girls and they ran around laughing and playing for several hours. Seeing Patrick with his cousins (and there are A LOT of them), aunts, uncles and other family did my heart good. He laughed and cut up with everyone. Of course everyone wanted to know how he was doing, and in spite of feeling weak and under the weather, he pressed through. I think that it did him good to see everyone, and I think it did them just as good. To make the holiday trifecta, Sunday brought Patrick's immediate family's celebration. Mr. Bill made a pilau and deer wrapped in bacon and Ms. Noonie had some wonderful sweets. The children opened their gifts, and after some batteries were installed, Cameron had a little computer, Avery got a Nuff gun (and with that I am sure Shep and Stacy got some super glue.), Hunter got a DVD, and Jentzen got a sword. As the kids ran around pillaging the living room, I opened my gift from Mr. Bill and Ms. Noonie - a ceiling fan for my kitchen!!! I am so excited about it. Mr. Bill came up Christmas weekend and even installed it for me!

My goal this year was to make Christmas just as picture post card as I could. Patrick's mom and dad came up to our house for Christmas Eve so they could see Cameron open up her gifts from Santa. It was a very exciting morning. Santa brought Cameron a pink and purple tricycle with a big red bow, a big orange ball, a Dora doll and blanket, and a the biggest bubble wand he could find. We spent most of Christmas day playing with our gifts from Santa. He brought me an iPad, and Patrick got a REALLY lush robe. The gift that Patrick gave to me was one of the most special gifts I could have ever asked for. He drew a picture of Cameron. It is stunning. I don't cry to often, but I welled up with tears. Patrick's parents went home about mid morning, and then my parents came down to get ready for the Poston Boxing Day Christmas Celebration.

On Sunday morning, we woke up to snow. Patrick woke me up and said, "Look outside! Get up, and get the baby dressed. Lets go outside." I pulled on a sweatshirt and pulled out the mittens. I got Cameron all bundled up, and Patrick, Cameron, my parents and I went outside and built a snowman, made snow angles, and thew some snowballs. Patrick gave our snowman green grape eyes, and I gave him holly berry lips. Once we put a Converse College hat, our snow man looked more like a snow woman, so Cameron and I named her Betty White. After playing in the snow until our noses were red and runny from the cold air, we went inside. Momma and I started a pot of coffee, put on my apron and thew the ham in the oven. Then I went into the living room, and started a fire. I lined up all of our wet shoes and boots by the door, and hung our wet gloves by what had grown into a roaring fire. I cooked the rest of the morning, and around mid-day family and friends started to arrive. Every one came with a lovingly prepared dish or dessert and an arm load of gifts. The house was filled with warmth from the food, to the fire, and the fellowship. I stoked the fire between stirs, and then we popped a few bottles of bubbly. We had pilau, duck, ham, oyster dressing, two sweet potato dishes, a green bean casserole, and desserts galore. The house was full of laughs and smiles. We moved the party from the kitchen to the living room, and we opened gifts. There I was still in my apron sitting on the floor in front of the fire, completely surrounded by wrapping paper and people that I love. My house, my tummy, and my heart were completely full, and it was glorious.

The love and excitement of the day was so wonderful that the most amazing thing happened. For one day it was like Patrick wasn't sick. Patrick's illness is always there even if it isn't on the front burner. The days that he is doing better, the mountain of meds and the calendar of appointments is always in the back of my mind. Then the days he is sick, my life is nothing but his illness. It has been all consuming for the last nearly two years - until Boxing day. It felt like I did before the insanity of cancer. It was like stepping into cool grass with bare feet - refreshing, relaxing, and liberating. It was what Christmas should be.

With New Year's Eve brought Cameron's 3rd birthday. Oh yes, I said it - third birthday. On Thursday I took Cameron to the store and let her pick out the kind of cake she wanted. "I want chocolate cup cakes with sparkles!" she squealed as we walked past the boxes of Betty Crocker. As anyone who has prepared for a school bake sale knows, cupcakes take forever. Of course when you are a kid you have no concept of all the hard work that goes into those jewels of frosted goodness. Speaking from experience because Rebecca and I volunteered Momma to make 13 dozen when I was in the second grade. THIRTEEN DOZEN! After Momma's head stopped spinning like Reagan from the Exorcist, she and my Aunt Fay spent countless hours baking and frosting a sea of cupcakes. (It is important to note, that after that incident, Becca and I were only allowed to volunteer to bring plates, napkins or sodas to any school function until I graduated from college.) Now that I am an adult and understand the true undertaking of cupcakes, I said "Wouldn't you love a BIG cake covered in sprinkles?" "Oh yes I would," Cameron excitedly replied. (Whew!) I started putting the cake together after dinner, and Cameron must have said a thousand times, "Momma, can I eat my birthday cake now?" "It isn't ready, and it isn't your birthday yet. You can eat it tomorrow." Well Cameron must have been an elephant in her last life, because she doesn't forget things. I woke up to her three inches from my face, "Momma, are you awake? It's my birthday! Let's go eat my birthday cake!" I told her that she would have to wait until after lunch before she could eat it. We had planned to take her to EdVenture Children's Museum after we ate lunch as her birthday celebration. I asked her what she wanted for her birthday lunch, and she voted for spaghetti. I whipped up some, and Patrick called his parents and asked me to call mine to invite them to go with us to the museum. It was super short notice for them to make a 2 hour drive, but Patrick wanted them to know that they were invited. Both sets of grandparents took a pass on the trip to the Museum, but I called Rebecca and Leigh Ann to invite them. They were both thrilled to have an excuse to go there. They both said that they have always wanted to check it out, but didn't want to be the creepy old ladies there with no kids. Our friend Joel also has a birthday on New Year's Eve, so he joined the party as did our friend Alexis. We met at the museum at 2:00, and I don't know who was more excited, Cameron or the 6 adults that came with her. We all played like we were little kids. After we played until the museum was closing, the party moved back to our house. Rebecca and Leigh Ann came with us, and we had birthday cake and shot some fireworks. Cameron really liked the sparklers and the fountain style firework that I got. I purchased one of what the lady at the firework stand called the "JV" version and then two of the "Varsity" version of this fountain. The shots only went up about 5 or 6 feet and did this cool volcano thing, and then out. Nothing crazy …. Well anyone reading this should know by now that I am not confined to suggested terms and usages of products. I set up the "JV" edition and lit it, and it was very pretty. It popped about 5 or 6 yellow and pink shots before it FELL OVER and the shots started flying toward us! The first one it the fence across from us, so it was shocking, but not scary. Then one flew towards the house where Becca, Leigh Ann, and Cameron were sitting. I can laugh now because nothing bad happened short of being a little startled, but for a moment it wasn't funny AT ALL. Cameron was done by that point, and cried to go inside. Becca took her in and opened the window so she could see the "Varsity" game. Those two went off without a hitch, and they were very pretty. Rebecca and Leigh Ann left to go to Joel's birthday party. I stepped in the kitchen long enough to start washing up the birthday cake plates, and I hear Patrick call from the living room, "Erin, where is Cameron? I don't see her anywhere." I stick my head into the room, and there she is curled up under the far side of the coffee table knocked out. I just let her sleep. Around 10:00 I picked her up, pulled her shoes off, and put her in the bed. I was ready to go to bed myself, but Patrick stopped me and said, "Don't you want to stay up and watch the ball drop with me?" I quickly recovered with, "Oh, I am just putting the baby down." I came back in and we watched the New Year's events around the world. About 20 seconds before the New Year, Patrick said "Come over here and sit with me." We sat on the couch, and watched the Ball drop over Times Square. He leaned over and kissed me, and said "Happy New Year honey." In my heart all I could think was, "I really hope so."

We flew out to Houston on January 2nd to meet with Patrick's team out here, and get a status report on how things were going. I was very concerned about how well he was going to negotiate the airports as weak as he is, and due to the fact that he is more and more unsteady on his feet. When we got to the airport, Patrick found a wheelchair, and I got our tickets printed. I rolled him up to security, helped him get his shoes off and carry on loaded onto the conveyer belt. When we got up to the gate, the really nice guy that was running the show there saw Patrick in the chair, and came and picked up Patrick's stuff, and said that he would move us to the front and make sure that there would be a wheelchair waiting for him when we got to Atlanta. When we got to that gate, our tickets said that we needed to check in to get our seat assignments. The gate was packed, so I rolled Patrick to a comfy spot, and I went to stand in line. The woman behind the desk seemed far from excited to be at work that day. It appeared to me that she was trying to call someone who's line must have been busy, because she would pick up the phone, press a three digit extension, and then just hang up. It was very bizarre. When it was finally my chance to sit before Her Highness of Hangup, she smacked her gum and talked with the other agent that I think was on break. I handed her our tickets, and she said "Uh, where is Mr. Stone?" "He is over there in the wheelchair." "Uh, Mmm K. Go sit right there, and I'll be with you in a second." Long story short (and I am sure you were wondering why I didn't have that idea about 1,000 words ago), we were upgraded to first class which was super fun. The seats were comfy, and the people sitting around us apparently had never flown first class before. They had been bumped from a pervious flight, and so they got the royal treatment. They were very good old Virginia country boys that were very funny, and once they realized that the booze was free in first class, the drinks started flowing. They ordered a round for the entire first class and said, "Yea, a round for everyone in First Class, and put it on my tab." I got a Bloody Mary, and the lady beside me and I chatted and laughed with and at the fellas from Virginia. She was on the way to MD Anderson with her mother who had stage 4 lung cancer, and she was asking me about it. I told her how much I thought of the people and the facility. I told her to be sure to carry a jacket because it is always cold, and that be ready to wait, but she couldn't have picked a better place to take her mom.

His first appointment was Monday with the Center for Targeted Therapy. Targeted therapy is the department of the hospital that conducts clinical trials and experimental treatments. The doctors have had been working on his case, analyzing his test results, and trying to fit him into a trial. They told us that they did have a trial, and that it had shown positive results in giving people more time. Because Patrick's cancer is so incredibly rare that there isn't a trial for him specifically, but this trial was the closest that they could find that they could work him in. Of course we were both very excited to hear about it, until the doctor told us that his treatment cycle would be every three weeks, and he would only be able to have treatment in Houston. The drugs that he would be taken were extremely regulated by the FDA, and in order fro him to get the treatment we would either have to fly back and forth or move out here for up to a year. I got a huge knot in my stomach as Patrick talked with the doctors. He seemed very receptive of enrolling in the trial. All I could think was "We can't move out here again. What about Cameron? We will have no support. All of our family will be 1,000 miles away. Oh my God, what am I going to do." After we got all the paperwork we left and Patrick and I started talking about the logistics of him participating in the program. I told him that I wouldn't want him to come out here without me and the baby. He said, "We can't afford for both of us to be out here. I am sure I could get Momma or Daddy to come out here with me." I didn't even know what to say. I mean I couldn't say, "Patrick, I don't want you to take this possible treatment that could shrink your tumors because I want you home." But all I wanted to say was, "If the treatment gives you a few more months, and you spend those few months in Texas rather than home with me and Cameron then will it be worth it?" He called his doctors back home, left them a message and said that before he made any decisions he wanted to get some feedback from them as well as Dr. Kupferman. He had an MRI that day, but we wouldn't get those results until Thursday.

We spent the next few days waiting for Thursday. Nichole from SCOA called and talked to Patrick about the chemo that they suggested. She said that it was incredibly similar to the drugs that he was scheduled to start when he got back to South Carolina, and she would support Patrick in whatever decision he made, but that if it were her, she would want to be home with her family. Amen to that! We met with Dr. Kupferman on Thursday, and the good news that we were looking for didn't come. He said that the tumors are continuing to progress fairly aggressively, and that his time was getting shorter. He gave Patrick 4 to 6 months. In very Patrick form he asked about other options, and even said that he was sure that he could design a dural replacement at Zeus. Dr. Kupferman said that if he could he absolutely would, and then he and Patrick cut a few jokes at each other. I asked if we still needed to come back and forth for check ups. It is very hard on Patrick spending hours in airports and sitting for long stretches in very uncomfortable seats. Dr. Kupferman said that he agreed that if Patrick decided not to participate in the trial, that he would be comfortable with us doing the rest of his care at home. He said that we could send him copies of the MRIs and keep him up to date over the phone. He said that if it were him, he would spend as much time with his children too. As he left the room he gave me a hug, and I couldn't let go. He rubbed my back as I softly cried. He said he wished that there was more he could do. I will never be able to thank him for all of the hard work that he has done for us. He is an amazing doctor, and an even more amazing man. As much time as we have spent out here, he feels like family. He gave he a harder squeeze and I managed to break free. Now wasn't the time for crying, now is the time for living.

I am looking forward to getting home. Going home to live in the right now. Right now Patrick is in pain, but he is himself. He is even more like the man I married every day. He laughs and jokes, and he makes extra effort to share himself with the people that he loves. He is drawing more, and I hope that he keeps that up as long as he can. He is building a legacy. He is strong and filled with faith, and he is the kind of man that I want to remember. Facing death and knowing that today is truly all you has a habit of putting things in perspective. That pile of laundry can wait. That grudge should be put down. That time you wait to tell someone how you really feel should be taken advantage of.

As most people, I love to eat. Most people have never really been hungry. More people than not rarely miss a meal, and when they do they are famished by the time the next meal rolls around. A few weeks ago things were so insane and Patrick was so sick that at 11:00pm I realized that I hadn't eaten anything all day. I had one cup of coffee about 7:30, and that was it. I am not much of a breakfast person, so by lunch time the next day I was inches from passing out. I ordered my favorite meal from this great little Chinese place called Egg Roll Chen - steamed dumplings and kimchee. As soon as I put the food in my car my mouth began to water, and my stomach started talking. I couldn't get back to the office fast enough. I sat down at the table and wolfed down those steamed dumplings like a wolf. I ate until I thought I might pop. They seemed extra delicious because it had been so long since I had had anything to eat. I put down my chop sticks and felt totally comfortable. I had finally filled that space in my stomach that had longed to be satisfied. My goal is to make whatever time my little family has together full. Not the "I just ate a few hours ago, so I am eating this candy bar because I am bored" kind of full. My goal is the fullness after eating my mom's cornbread dressing on Thanksgiving. The fullness of that long awaited bowl of hot homemade soup on a cold day. The kind of fullness that makes you feel totally satiated. Every day I strive to give my family that type of fullness of heart. You can never truly appreciate that full felling unless you have been truly hungry. I have spent a great deal of the last year and a half not only hungry, but absolutely famished. The hunger pains for happiness and peace of mind are sometimes nearly more than I can take, but now is not the time for hunger. Now is the time for feasting. Feasting on the love of my family and loved ones. Feasting on the little things. Feasting on whatever time we have together. Not only feasting for me, but making sure that everyone has a good meal at our table. I'll do everything I can to be like my grandmother. She always made sure that if you were at her house that you had a little something to drink and at least a bite to eat.

Let the feast begin.


  1. Erin, you are not only an eloquent writer, but your heart is so full. I envy your strength and pray for you all!

  2. Thank you for taking the time to let us know how things are going. Continuing to pray!

  3. You don't know me, but I just wanted you to know that I will be praying for you as you and your family feast together.

  4. You don't know me either, and I can't remember which friend of a friend led me here. But I am here, and I am praying so hard for you and your family.

  5. Erin,

    I want you to know that each morning at 5:30am I am sending prayers for you, Patrick and Cameron to have strength for the day. You are a special wife, mother and young lady.

    Love, Mrs. Beckett (Mallory's mother)

  6. Thank you for sharing you life, journey and struggles through this blog. You don't know me either, but your family is inspiring. My heart breaks for you, Patrick and Cameron and I can't imagine what you are going through. Your strength and faith are amazing. Our God is never too big for anything and I believe that with all my heart. I will be praying for your family and that God gives you amazing time together. I will also be praying for a miracle because I know there is nothing God can't do, sometimes we just can't understand his reasons behind what he does allow, we just know he loves us more than we are able to understand.

  7. Hello,
    I have a question about your blog. Please email me!

  8. Thank you for sharing, Erin. Sending prayers and love and beautiful thoughts your way.

  9. Erin, I hope it is ok that I am reading your blog. Your writing takes my breath away.... I read and I feel Iike I am reading a novel. Your description of your time at Edisto is perfect. I spent my summers there, & your words take me back to my happy place. After getting lost in your words I have to stop & remind myself that this is not fiction. It is your life. I admire your strength & willingness to share your journey with others. I pray that God watches over you and your precious family. Thank you for living your life to the fullest & for letting me & others have a small glimpse into it! Praying.....