April 2011: 31 Years Old- After 3rd Chemotherapy Treatment
2 Years: Submission To Remission, Cancer Taps Out
Telling my transplant team, cancer team , the CF Team, and my lung transplant support group at the University Of Michigan Medical Center (UofM) the following after 6 months of intense RCHOP (Rituxan, Cyclophosphamide, Hydroxydaunorubicin, Oncovin, and Prednisone) Chemotherapy treatment. "Cystic Fibrosis (CF) is 100 times worse than having stage 4 cancer large B-Cell Non Hodgkin's Lymphoma, at least for me and my personal experience. I'd take having cancer any day over having CF in my lungs again. With cancer, there are medications to help, people can beat cancer. With CF, it's a progressive disease from the day you're born. There are no IV drugs to 'cure' CF or stop it. With cancer, you feel like crap one day, and are leaping out of bed feeling awesome the next, or the next few after your chemotherapy (chemo) course is done and over with. With CF, you feel like crap one day, feel like you're dieing the next, and are actually dead the next. If you can't breathe, you can't stand. If you can't breathe, you can't fight. Bring on round 2 if it ever occurs."
The looks on the doctors and support group people's faces were priceless when I told them this. A lot of it has to do with our media, putting fear into everyone. I'd like our news media to spend 1 year with people with CF and people with end stage CF as well.
Lets just say when I was diagnosed with cancer, I was relieved. Finally, an answer to my chronic stomach pain that I dealt with for a month. Usually I don't make a big deal out of stuff like this, I figured what's the harm in posting my 2 year remission from having stage 4 non-Hodgkin's Lymphoma? Also, I don't want to sound like chemotherapy and having cancer was a breeze, because it wasn't. But. . age plays a huge factor as well. Luck, determination, and will power always helps.
Award Of All Awards The award below is the most important award that I've ever received, and I've received a lot through my school years, especially in high school. I didn't know I was receiving this until after my chemo was complete and I was about to leave. This was a 6 month battle that included no grades, no attendance records, or nothing else. Just pure 120% determination and fight.
July 5th 2011 was my last chemo treatment. I had my last Positron emission tomography (PET) scan after my 5th chemo treatment and everything was in the clear, but they wanted to do a 6th chemo course treatment to be on the safe side, which usually (not everyone) receives 6 courses of chemo. I was on RCHOP (IV chemo treatment meds above), which is a very intense chemo treatment, usually they use RCHOP for Non-Hodgkin's Lymphoma (other types of Lymphoma) and Breast Cancer patients. It's pretty intense.
Living on Bread, Crackers, and Water So how was I diagnosed with Non-Hodgkin's Lymphoma? 4 months after my double lung transplant (due to CF) I started getting extreme cramping to where I was sweating, and having to rock myself back and forth in a chair or in my bed for 3-4 hours to get the pain to go away. I had the symptoms in December 2010 and after three days of stomach pain (most notable after eating/drinking juice) I called my CF doctor and told her what was going on, then I called my transplant nurse and told her what was going on. Both decided to put me on a stool softener (MiraLAX), thinking this was a CF problem, not related to transplant. I too thought the same thing. A lot of CFers have bowel obstructions/blockages, which I've never had in my 34 years of having CF. I had a small obstruction in 1997 that GoLYTELY took care of. Luckily, I've never had bowel problems since, besides this time. So after 5 days of doing the stool softener, I got a little bit of relief, but I still was having stomach pain, especially after I ate. My pain was still a 9/10, 10 being having to go to the ER, but I'm a CFer, a fighter, and not one that goes to the ER unless it's an 'emergency', which I've only had to go to the ER once prior to transplant. I think coughing up four 8 oz cup fulls of blood is an emergency. :) At this point I was only able to eat, bread, water, and crackers. It had been a week and I dreaded having to eat. So my transplant nurse set up an appointment for me to see a Gastrologist (GI) doctor at UofM Medical Center to see what was going on. So I described to the doctor what was going on, so he took me off one of my transplant meds (with my transplant doctors approval), because the medication that I was on can cause constipation, which was what I was having. He told me if nothing changes in 3 days to give them a call back. Well, three days came and gone and my pain was still a 9/10. Like I mentioned above, the pain mostly occurred after I ate. If I rocked myself back and forth for 3-4 hours, it went away.
So I headed back to the GI doctor and they performed a Endoscopy, where they stuck a tube down my throat and looked inside my stomach, and sure enough, 10 ulcers were found and one was cancer. My transplant doctor (Dr. Kevin Chan) actually called my house at 6:00 PM (from his house) to tell me personally the news of my endoscopy, which we knew something was up, because the doctor who performed the endoscopy said the way it looked, one ulcer was cancer., but the final report hadn't come back yet.
So my transplant doctor talked to my Mom, than myself. He told me I had Post Transplant Lymphoproliferative Disease. Where was the cancer at besides my stomach? They had no clue, that's why they set up an appointment for me to see an Oncologist (Cancer specialist) at the University Of Michigan Comprehensive Cancer Center (next to UofM Medical Center).
The Plan Isaw the Oncologist and she wanted to do a PET scan to see where the cancer was at and how it should be treated, and she wanted me to do a Bone Marrow Test (BOTH SIDES) of my spine. THAT HURT LIKE A SON OF A GUN. Who knew a needle going into your bone not once, but twice, could hurt so much. I had never been in that much pain before (they only knock out kids, not adults, at least that's what I was told, because I asked) They double numbed me. I don't think I could ever do that again unless I was heavily medicated. It hurt worse than my transplant. 50x worse. I said a few choice words out loud (not at the nurses) but because it hurt so much. The nurse was so kind she gave me a back massage. HA HA!
Gosh did that hurt. Getting hit in the face with a hockey puck would have felt like a warm kiss from Jennifer Lawrence compared to a double bone marrow test. Seriously. But it had to be done, and I knew that. So my tests came back as stage 4 Large B-Cell Non-Hodgkin's Lymphoma, and the PET scan lit up like a Christmas tree, which wasn't good. I had the cancer in all my lymph nodes (including forearms), both lower and upper diaphragm, stomach, colon, and bowel. As I looked at my PET scan on my oncologists computer, my jaw dropped. I basically had it everywhere, besides one place. Mytransplanted lungs, which is actually where most doctors find it, which is kind of strange. I had one thing going for me, it wasn't in our lungs (mine and Gretchen's), who was my donor. If I could breathe, I knew I could beat this.
My parents were worried, but me? Not at all. As I said, I was relieved. I remember telling them that this was just cancer, not CF. NOTHING that I've been through can be worse than having Cystic Fibrosis. Just wait, you guys will see. Trust me on this one. To say I had my game face on, was an understatement. This wasn't just another hockey game I was playing in, but the game of life. There is no win or lose, win you must.
So the next week I started my first chemotherapy course. Yeah, I was a bit nervous about how I would react to the chemotherapy, which I did have a bronchospasm (hard to breathe) from the Rituxan so they quickly injected me with a high dose of steroids, which didn't work. I quickly asked.
"Do you guys have an albuterol inhaler on hand, that should do the trick and open up my bronchial tubes." Dr. Richardson was correct-o and within 30 seconds I could breathe easier. Within 1-2 minutes I was back to normal. They continued my first dose of chemo and I was ready to go after 4 hours. See, those o'l CF tricks do work with new lungs. After my first session, I had no other problems.
After my first course of chemo, my stomach pain went away within a day. I was told that RCHOP works very well for PTLD patients and the doctors were right. I would like to add that Chemo (RCHOP) is tougher on older patients, thus a reason for concern. We've lost 3 post transplant patients in our support group from the same thing I had. Being blessed is an understatement.
So for the next 6 months I knew I had entered uncharted territory. I continued to go to my pulmonary rehab maintenance class (I can go anytime, even at 6 AM- HA!) and continued to exercise, which helped. I did miss some days because I was too tired to go or in the hospital.Out of the 6 months of chemo, I can count on both hands how many days I missed. Before my chemo, I did lose 10 lbs, which wasn't bad, because for nearly a month I was just eating bread, crackers, and drinking water. It was all I could have without getting chronic stomach pain.
Also, this had nothing to do with my CF. This was transplant related, since it was caused from my anti-rejection meds, which they quickly (I mean very quickly) changed me to another medication.
I really had no major issues during my chemotherapy, but my white blood cell count went very low. The lowest was 0.1 and a normal white blood cell count is roughly between 4.0-10, and now mine ranges from 4.0-6.0 due to my anti-rejection meds. During chemo, I basically had no immune system, and never got a cold or anything like that. I was very lucky. So through my chemo treatments I was put on Neupogen shots (inject them into your stomach yourself at home), which in return caused me to have Neupogen fevers, thus I had to be admitted to get my fevers back down. The shots do burn, but if you do it super slow, it's not that bad.
Thank You UofM & UofM Comprehensive cancer center nurses: 6C Pulmonary/General Medicine Wing (including Amanda Gramling) Amanda Gramling
Anytime I had to go into the hospital due to high fevers from my Neupogen shots to get my white blood cell count back up, I was always admitted to 6C wing at UofM Medical Center, because I was a post transplant patient. If I just had cancer (and no transplant) I would have been admitted into the comprehensive cancer center, but all the nurses were so wonderful there.
During my hospital visits, I got to meet the entire UofM transplant team (all the doctors) and also all the CF doctors as well, besides two. So I pretty much got to know everyone on a daily basis, as they always would stop in and say hi, which was nice of them to do. I remember a nurse by the name of Amanda Gramling (pictured left), who I had as my nurse on 6C so many times, including right after my transplant. She was so nice and wonderful and actually gave me my first blood transfusion that I remember. I had one when I was a baby and of course during my transplant, which I don't recall since I was on the operating table. I really can't say enough about the nurses on 6C and over at the cancer center. What wonderful, awesome, and nice people. These nurses work so hard at what they do and thanks to Amanda and everyone else for making my stay(s) a breeze. =======================================================
So this award does mean a lot to me. To many it's not a big deal, but to me it is. And you want to know the strange thing about all this? I remember about after a week of having this chronic stomach pain, I said to myself.
"I wonder if this could be cancer related to the transplant anti-rejection meds? Nawww. Not this soon."
Thankfully both my transplant doctor and surgeon told me (before my transplant) that there was a chance I could develop cancer down the line, we just didn't know it would be 4 months. After doing research, it (PTLD) can develop 30 days post transplant.
Here's to 2 years of being in remission. One of my all time favorite movies, Iron Eagle (1986) 'Road Of The Gypsy' 1986 Iron Eagle Motion Picture Soundtrack
July 7th 2000 I saw myself kneeling before my friend's grave, placing flowers at her grave site, wishing I could place them in the palm of her hand. It had been 3 years and 1 month since her passing. I spoke to her like she was by my side. I remember hearing birds chirping and decorations on another tombstone rattle. I reminded her about how we met, but I remember one thing that I never told her, and it was that she was so damn cute. We were just friends, but boy, she was pretty in every way possible.
As I stood up, I looked over to the corn field, which was behind her tombstone, and the wind started to glide faster through my hair, and I felt a comfort. Then I looked up at the sun and that spark of light beamed down on me. It was like she was placing her precious hand on my shoulder and whispering into my ear.
"Jesse, everything is going to be ok."
By this point I was crying, because I knew I had to do something I never wanted to do. Something I never wanted to tell Dana, something that was going to break my heart. I said these exact words.
"Dana, you know I care about you so much, but I will never be coming back to visit you again. I live far away, and I'm on my way to a CF family retreat camp in Hillsdale, but you'll always know that I care about you. You're loved by so many, including myself."
With tears flowing down my face, I kissed the palm of my hand and placed it on her tombstone. As I walked away, I turned around expecting her to charge after me and give me a goodbye hug, but that didn't happen. I knew that wouldn't happen until we met again. On the other side.
Portrait photo of Dana: February 1996 (16 yrs old)
Photo courtesy of Leslie Nessel
This is the story of my Cystic Fibrosis (CF) friend Dana Maynard, who passed away at the age of 17 on June 11th 1997, after receiving a liver transplant due to CF in 1994. Like myself (double lung transplant on September 26th 2010), Dana received the gift of life and was able to live her life an extra 3 years. Without that gift, without that selfish act of kindness, Dana's family wouldn't have been able to enjoy her presence, and her CF camp friends would've lost a very dear friend much sooner.
To tell this story, I must go back to CF camp 1992, where we met, and how we met. My memory might be a bit foggy, but I'll try and do my best.
Her death hit me pretty hard, and it affected us all. Out of all the CF campers who knew Dana, I don't think it hit anyone harder than Jason Sevrey, who at one time was Dana's love interest. Sadly, Jason passed away on December 3rd 2000 from CF.
And to tell this story, I must go back to that day when Andy Johnston (fellow CF camper) called me up on the phone, just two days before we were going to visit Dana in the hospital. He said the words I never wanted to hear. "Dana passed away."
Question:How do you talk to an angel? You'll learn how through this journey down memory lane.
I entered my 4th year at Cystic Fibrosis (CF) Camp Onkoi Benek (Indian phrase = "To Conquer Tomorrow") at the age of 13, which is on the outskirts of Battle Creek, MI in Dowling, MI. Actually, it's called Outdoor Education Center and the camp is called Camp Clear Lake and has been operated by Battle Creek Public Schools since 1947. As of this typing, there's word that it might close for good. I guess Battle Creek Public Schools are doing some cut backs and the 1933 camp looks to be on the chopping block. The camp is the oldest public school camp in the nation. <----- Yeah, I think the government should get involved in this one. Sorry, just my opinion. When World War II broke, the U.S. Coast Guard used the camp as a training facility from 1942-1945. A final decision has not been made as of this typing.
Anyway, that year at CF camp I met a whole new group of friends, one of those was a cute 12 year old girl, who as I recall, had short curly hair. Dana was her name. Sadly, I have no pictures of Dana from CF camp 1992. To my knowledge, Shawnna Gould (RIP: 9-12-12) was the only person who had a picture of myself and Dana slow dancing together. Yes, you read that correctly, slow dancing. I remember several years ago I wanted a copy of that photo, but I felt bad about asking her for it so I could make a copy.
So, there I was at our camp's dance, just looking around. I saw this girl, who I wanted to ask to dance, but I was shy about the whole thing. I remember a few people (campers) around me egging me on to go and ask her to dance. Willy Halpin who was my camp counselor in 1989, walked up to me. I remember the conversation going something like this.
"Go ask her to dance. Go on. . come on, just go and ask her."
So I slowly walked up to the girl, who was the same height as me. I remember asking her to slow dance, and she said sure.
There we were, slow dancing. I held Dana in my arms. It was almost like a scene from the hit TV show The Wonder Years. Just like Kevin Arnold and Winnie Cooper, but I have to admit, we were dancing much closer than o'l Kev and the Coopster were.
Everyone was looking at us. I remember Dana saying into my ear.
"Oh my gosh, everyone is starring at us."
I remember telling Dana something like. "It's ok, just look at me, and sway to the music. Just imagine no one else in the room, besides us."
I'm not sure what slow song was playing, but at that moment our friendship started. Dana was the cutest thing.
The next day or two I remember being in the room where our camp talent show was going to be held. I wasn't doing anything for the talent show that year. I'm not sure who suggested it to me, but it was a female camp counselor. I was talking to her, but she must have known Dana or maybe she was Dana's camp counselor for that year in 1992. She was going through some records and tapes and came across the 1966 song (You're My) Soul And Inspiration (Click to play) by the Righteous Brothers. I remember her saying something like. "Jesse, you should sing this song to Dana at the talent show. She would love it."
I never said it, but I thought it.
"Me sing? Are you crazy?"
Listen, I can't sing a tune at all. If The Righteous Brothers heard me sing their hit song, they would throw tomatoes at me. I would have just embarrassed myself, and Dana included. I didn't even try to sing, I just knew it was in my best interest (and Dana's) for me to pass on this. Looking back 21 years ago, I still don't regret that decision. A few days had passed and it was time for our talent show. As I was waiting for the talent show to begin, I saved Dana a spot next to me, as everyone was sitting on the wooden floor getting ready for the talent show to begin. Dana didn't know that I was saving her a spot, but my world was about to change.
A pretty blonde girl came up to me and asked nicely.
"Is anyone sitting here?"
I said. "No, the spot is all yours."
I'm not sure where Dana was, but she did find a spot somewhere else. Dana and I were just friends at this point, but who was the blonde? The babe (my nickname for her) was Amanda Bain, who would become one of the most important people in my life. As we both were sitting next to each other, her hand hovered over mine and within seconds she placed her hand on top of mine. I couldn't believe this girl was flirting with me. I remember turning my head and we both smiled at each other. Amanda and I became an item at CF camp that year. The whole world knew it, and any chance we got we were together. From that night forward, Amanda and I were boyfriend and girlfriend for the next several days at CF camp, and leaving her was very hard. It was raining during our last day at CF camp, and saying goodbye to Amanda was very difficult and emotional.
So whatever happened between Dana and I? For the record (again), Dana and I were just friends this whole time. Yes, I thought she was cute and attractive, but it's very odd, I think we both knew we were just going to be friends. We never said anything to each other about it, but. . . after the talent show, we became even closer friends because we got to know each other, and our group at Camp became close.
So whatever happened between Amanda and I? We continued being boyfriend and girlfriend for 1 year and 3 months. September 1993 we broke up. I broke up with her. The long distance relationship was very hard (it was my first), plus I didn't want to hold her back from dating other people. We continued to be friends, saw each other at camp 1994, 1995, and 1996, which was our camps final year. There was no camp for our session in 1993. We continued to communicate through the years. Sadly, Amanda passed away on January 20th 2006 from CF. She received the gift of life on October 15th 1998, 7 years prior to her passing and was granted a new set of lungs. At the time of her passing she was engaged to a guy named Lance. He proposed to her while she was in the hospital.
So where did Jason Sevrey fit into all this? As many of you know, Dana and Jason became an item at CF camp, but not that year. Jason teased me a few times about Dana's hair, but little did Jason know, 3 years later, him and Dana would become an item. How funny is that? Life has a very strange way of connecting people. Jason had the hots for a girl named Beth that year, but to my knowledge, she never attended CF camp again, so Jason and Dana basically weren't an item. That would all change. . . . oh boy, would that change.
Since there was no CF camp in 1993 for our session, it would be two years before I'd see Dana again. We kept in contact via postal mail and phone.
Little did we all know (her camp friends) but in 1994 Dana had a liver transplant.
I thought.
"Wait, what?
She had wrote and told me that she received a liver transplant.I couldn't believe it.I (or anyone else) didn't even know she needed one.At least I didn't know, some of our other CF camp friends might have, but I never did.
To my knowledge (what I can recall) Dana needed a liver transplant due to all the antibiotics (including IV antibiotics) she had been on through her life, which it's common for people with CF to have lower kidney and liver function, because of all the medications and antibiotics we're on.In some cases (as in Dana's) the liver or kidney starts to fail.
CF camp '94 rolled around and Dana looked awesome. Awesome meaning so healthy (and cute as always) <----- I just had to type it once more.She looked very healthy and she now had long hair.
Dana was 14 years old and by this time she was into golfing, which was something she enjoyed doing, and could do.I remember in her letters she'd tell me about being on her high school's golf team.Dana attended Concord High School in Concord, MI.3 years later it would be a place a few of us would know a bit about. So Camp '94 was in the books.Of course Jason and Dana weren't an item that year.Jason had the hots for Stephanie Shields (RIP: 10-7-08) that year and they were an item, but of course Jason and Dana were friends, and had been since Camp '92, If I recall correctly.They could have been friends before that, but I don't remember.
Another year had passed and it was time for CF camp '95.This is where it all began folks.Jason and Dana finally hooked up and were an item.My memory is very foggy, but I know Dana and Jason weren't together in 1994, because Stefanie and Dan "The Man" Sharrow (my nickname for him) were together. Sadly, Dan passed away in 2004 from CF.
Jason loved Dana so much.That's all that boy talked about.Dana, Dana, Dana, Dana.He truly cared for her.So the love story of Dana and Jason began at CF Camp 1995, then at Camp 1996 Dana and Rob Fowler were an item. Though, Jason still always liked Dana, even though he was with Colleen James (RIP: 7-13-09) at Camp '96.He never told me this, but deep down I know he did.
Is this stating to sound like the Young And The Restless?HA!
I should say that after Camp 1995, Jason and Dana were an item off and on through the years.I honestly don't know the last time Jason saw Dana.But he'd always talk about her through the years.
When was the last time I saw Dana? That would be in the Fall of 1996, about 9 months before her death. Our CF friend Andy Johnston put on the first of 2 Bash's (I believe). He invited a few of us over to his house for the weekend.I hope I get this correct. He invited the following.Myself, Dana, Alisha Stokes, Ryan Upson, Jennifer Hall, Jennifer Brooks, Jamie Kloote (RIP: 11-12-01) and Jason Sevrey.I think that was the first Bash gang. I remember one time I was in the car with Dana and Andy was driving.I'm not sure where we were going or what we were doing, but it was night time.As Dana and I were riding in the back seat, "Comfortably Numb" by Pink Floyd came on the radio.With all that Dana had been through in life, in terms of CF and being poked all the time, and her liver transplant, this song reminded me of her.I think she was us to all the pricks (needles that is) and the pain she went through.Every time I hear this song, I think of Dana.She's no longer feeling any pain.
We all had a great time together, and yet again, we were leaving one another.Dana was heading back to Concord, Jason was heading back to East Lansing, Jamie was heading back to Grand Rapids, Jennifer Hall was heading back to Waterford, Jennifer Brooks was heading back to Dryden, Ryan was heading back to Grand Ledge, Alisha was heading back to Milford, which was the town next to mine, and I was heading back to Highland.
Without CF camp, I would have never met these people, including Dana.No one knew at the time, but there would be no CF camp '97, as the camp was discontinued.More importantly, little did we know we'd lose our friend 9 months later.
I was in my junior year of high school in 1996-97 and had just turned 18 years old.Dana was in her sophomore year (I believe) and 16 years old.These should have been the greatest 4 years for Dana.Sadly, they'd be her final 2.
Backstory: Cleo (sp) Back in 1996, Cleo was working as a pulmonary tech/therapist at Harper University Hospital, which is my CF center in Detroit, MI next to Children's Hospital Of Michigan. It was my first year at Harper and I had spoken to him about CF camp, and I told him that he'd love it . The other person that got Cleo to go to camp was Jim Meyer (I believe). So 1996 Cleo attended camp as part of the staff. He had the time of his life that week and enjoyed it. He talked about Dana and so many other people and always asked me how she and everyone else was doing. Sadly, I informed Cleo in the fall of 1997 that Dana had passed away. He was bummed to hear about her passing. I see Cleo every so often at Harper. Even though he only went one year, he still has fond memories of his experience there. He's no longer a pulmonary tech/therapist, but still works at Harper at a higher position. I'm not sure of his job title, but I believe he does something with medical insurance now, in terms of medical equipment with the hospital. I last saw him in June 2012 and he's doing good.
It's very hard to lose a friend, especially someone that has the same disease as yourself, but it's even harder for a parent/sister/brother/relative to lose their own family member.This is something I'm not familiar with, since I'm an only child, but to go through that hell. . . I can't imagine it.
9 months had passed since Andy's Bash.Andy had called me to tell me Dana was sick.I think we all knew she had been sick off and on, but this time it was different.Andy said these exact words to me and it was all he needed to say.
"Dana is sick and it doesn't look good."
We all knew what that meant, but for it to become reality, we just couldn't imagine it.Andy called me up on Monday (I believe), which would have been June 9th 1997.Him and I (and a few others I believe) had planned on heading up to the hospital to visit Dana on Friday, June 13th or Saturday, June 14th.We couldn't go during the week, due to school, but had planned on seeing her on one of those days.I can't recall which day.
Wednesday, June 11th 1997 Andy called me to say the words I never wanted to hear.
"Dana passed away."
One moment the reel of life has you seeing yourself slow dancing with someone you had just met, the next, it brings you the news of a friend passing away 5 years later. Sometimes life can really suck.
It really didn't hit me until that night.I cried and remembered how sweet Dana's voice was, and all the times she us to call me 'shorty', which it brought a smile to my face.She was the only girl who I liked being called shorty by, because we both were the same height.
Funeral arrangements were made by her parents.Her funeral was set to be on Saturday, June 14th 1997 at 1:00 PM.I remember waking up that morning and getting ready for Dana's funeral.I felt as though I wasn't getting ready for Dana's funeral.I felt like I was getting dressed up to say my final goodbye to her.I wore the same suit and tie that I had worn to my Junior homecoming dance.
I remember driving over to Andy's house.Since Alisha and I lived close to Andy, all three of us decided to ride together.Andy and his Mom were so generous and kind, that they bought red roses for us campers who would be attending, so we could place them on Dana's casket.If I recall correctly, it was myself, Alisha, Andy, Jennifer Brooks, Jennifer Hall, Jamie Kloote, Jason Sevrey, Ryan Upson, and Scott Lipinski.Scott was an adult staff member (non CF) from camp.
I remember Dana's funeral like it was yesterday.I remember getting out of the car and we all headed inside Concord High School.Dana's funeral was held inside the gym, due to so many people attending.There was no way that a funeral home could hold all those people.I remember having butterflies in my stomach, because I knew this was it.Dana's funeral was a closed casket, due to her being very jaundice from her liver failing.Dana's skin was very dark in color, thus the reason for the closed casket. She had a liver transplant in 1994, thus her transplanted organ had failed.
I remember vividly walking into the gymnasium and there was Dana, toward the left side.We each had a rose in our hand.With a picture beside her casket, we knew this goodbye would be without a hug, but with many tears.
As we quietly walked up to her casket, we placed our roses with sadness, pride, and honor.Sad to see our friend leave, pride of the fight she gave, and the honorof knowing her.We all headed up to the bleachers for the service.During the service I thought about the dance I had with Dana, the many conversations we had at CF camp, the time Dana called me to ask for guy adviceas I believe she was dating a football player at the time, and the many letters and phone calls we exchanged.
I didn't know how Jason was going to handle it, and I sat next to him while he was day dreaming.What was he exactly thinking about? I'm not certain.I can tell you it was about Dana and the love he had for her.I remember I placed my hand on his shoulder and said.
"It's ok." I wanted him to let it out, because I knew everything was building up inside of him.We all were the only ones in that room who knew what it felt like to have CF, and to know one day that that would be us in that casket.
I remember as the service ended, Jason and I hugged. He said to me.
"I loved her so much."
I said to him.
"I know you did Jason, and she knew that."
The service was going to conclude at Pulaski Cemetery in Pulaski, MI (next to Concord) where Dana would be laid to rest.Afterward there was going to be a luncheon.The ride over to the cemetery was very quiet.I don't think anyone said a word, or at least not much of anything.
We all headed to where Dana was going to be buried.I remember looking around, seeing a cornfield behind where Dana was going to be buried.I wanted to remember this day for as long as I lived, because I knew I wouldn't be back.We watched our friend being buried beneath the ground. I just remember talking to Dana in my conscious.As the service concluded, Jason told me he'd catch up with us in a bit.Jason needed this time alone. I'm not sure what he said, but he knew this would be it.I didn't want to leave him alone, but I knew he needed this.
So there was a luncheon and we got to see Dana's parents again.I remember seeing Dana's sister Leslie and her two brothers.Then I remember kids running around, and little did I know, one of those kids was Alyssa Maynard, who at that time I believe was 4 years old and just days away from being 5 when Dana passed away.Alyssa would get into contact with me 11 years later via Facebook after I wrote a memorial on Dana, which I've converted over into this final memorial.
Its been so wonderful seeing the progression in life that Alyssa has made.In a few days Alyssa will be 21 years old and is currently studying Occupational Therapy at the University Of Toledo in Toledo, OH.Alyssa's brothers (Austin and Andru) were 3 and 1 years old, I believe.Austin graduated from high school last year (June 2012) and Andru (I believe) will be a senior in high school when school starts back up in the fall (2013-14 school year).
Austin and Andru never knew their aunt Dana. Alyssa has told me she has some memories of Dana, but the one thing I'd like for them to know about her was that she was veryCARING.She battled CF with heart and never gave up. She never was about herself, and put others before herself.She would be very proud of all three of them.Leslie I believe was 23 years old at the time.I've had the honor of talking to Dana's Mom as well via Facebook, and the whole family has helped me out with this memorial.I can't thank them enough.
So whatever happened to Jason? I don't know this from fact, but two others from CF camp have told me that Jason was never the same after Dana's death.I think he struggled with it.Jason would die from CF 3 and a half years later.Folks, he's in a better place. Now holding Dana in his arms, looking down and watching over all of us.The last time I had seen Jason or talked to him was in the fall of 1997.He was a good friend to me, and I will always remember him.
So what about me? Well, my journey with Dana wasn't over yet. I had one last thing to take care of.
(left to right) Andru Maynard (Dana's nephew), Terry Maynard (Dana's brother), Alyssa Maynard (Dana's niece), Austin Maynard (Dana's nephew)
Photo of Dana's tombstone courtesy of Alyssa Maynard
By this time in July 2000, I really hadn't been in contact with the gang from Andy's Bash. The Fall of 1997 was the last time I had seen or talked to anyone, until 2006 when I saw Scott, Andy, and Ryan at a gathering for Father Jim Meyer's (counselor from CF camp) birthday in Elk Rapids, MI.
I had been invited to a CF family retreat camp that was taking place in Hillsdale, MI on July 7th - July 13th 2000. Little did I know at the time, it would be the final CF family retreat. In 1998, 1999, and 2000 the retreat was held at the Michindoh Conference Center (Michigan, Indiana, Ohio).
Back in 2000 Mapquest was still a young tool for people to get directions for certain locations. The website was launched in 1996. So as I was mapping out how to get to Hillsdale, I saw that Concord (Dana's hometown) and Pulaski, MI (where Dana is buried) were actually near Hillsdale, or at least not too far way. A thought popped into my head.
"What if I visited Dana?"
The quest was on! It had been 3 years since her funeral. There I was, excited, and doing some research on how to get to her cemetery, which I could not find on Mapquest (cemetery is off Pulaski Road), but by gosh I was going to find out how to get there once I got into town.
Getting to the conference center in Hillsdale was a breeze. Finding Pulaskicemetery was a bit harder, since I had nothing to go by (images), plus there's no address to the cemetery. Where was Google Maps when you needed them? On my way I stopped off and bought some flowers for Dana to place on her grave.
I remember stopping and asking for directions to the cemetery, not once, but twice. Once I got home (after the retreat), I figured out what the problem was. M-60 (at least back in 2000 on MapQuest) had two different names. M-60 and Homer Road (if I recall correctly). In 2000 Mapquest only had one name for the road, but that has changed. Thank goodness.
I actually had no problems getting there once I asked the second person. The first person had just moved into town not too long ago, so they weren't familiar with the area. They told me to ask a lady down the street, who had lived in the area for 40 years. So that's what I did.
I remember driving down Pulaski Road and the trees just hovered over the road and it was a bright, sunny, and tad windy day. I remember it getting dark as the trees felt like they were hovering over me, but then all of a sudden there were no trees on the sides of the road, but farmland. I knew I was on the right path, because Pulaski cemetery is surrounded (at least the back) by farmland. A few minutes later, I knew I had reached the cemetery. In the photo below you see a sign that reads Pulaski cemetery, but back in 2000 there was no sign, nor back in 1997. From my research, this sign was placed here in or around 2005. I'm not sure.
So I remember getting out of the car and just looking around for a split second. I stopped in my tracks to hear the birds chirping, and they were coming from a certain area of the cemetery. So I started walking toward the sound, and 2 minutes later, I turned my head and saw Dana's tombstone. I remember saying to Dana.
"See, I remembered exactly where you were from when we were out here back in '97."
I softly laid down the flowers that I had gotten for Dana. I noticed quite a few more graves had popped up since 1997. I visited with Dana for 45 minutes. I told her how I was doing, and how everyone from Camp was doing. I told her (the story) of how we met and I still remembered our dance together. I told her it was a part of my life that I'd never forget. I continued to tell her that she needed to watch over Jason, and the fact it had been 3 years since I had seen anyone.
Honestly, I thought I was doing pretty good (not crying), but then I looked away from her tombstone, almost like I didn't want to look at it. I remember shaking my head and telling her I was so sorry to have to do this, and told her (as I mentioned at the beginning of this memorial) that I would never be visiting her again, because it was a long distance. I told her I would never, and I mean ever, forget about her. I don't think I had cried that hard in a very long time. Saying goodbye to her was hard, yet again, just like it was in June 1997. By the time I got to my car, I felt so tired. Emotionally drained after those 45 minutes. Before I left, I kissed my palm and placed it on Dana's tombstone.
I continued on down the road and headed to Hillsdale. I don't think I told anyone I visited Dana's grave. I would have stayed longer, but my time to be at the retreat was at 4:00 PM. I actually remember getting there about 15 minutes early, which I thought was good timing.
Here we are 13 years later, and by the pictures, it looks like Dana has some more company. I'm sure 'Dear Abby' will be there for her surrounding friends. Dana's Mom informed me that her friends would call her 'Dear Abby' because she was always there to give them advice and to help them out. Dana HATED to be called that. I'm really in trouble now :)
Family Matters Back Story- Wish You Were Here So after I spent nearly 5 hours searching for songs that I wanted to use for Dana's memorial a few weeks ago, there was one song that I wanted to use, but I couldn't think of the name of it. Each song has been picked with a special meaning. It was bugging me that I couldn't remember (mind went blank) the last song that I wanted to use. So the next day I was out and about, and actually heard it on the radio. I couldn't believe it. After 30 seconds of turning on the car radio, it popped up. I'm not sure if it was a sign from above, but I knew that I had to include it. So here's 'Wish You Were Here' by Pink Floyd, a band that Dana liked, along with The Beatles.
For this final chapter, I wanted to talk about Dana's family/relatives. Dana wanted her family to not grieve for her, but to live for her. That's Dana for you, always thinking of others and not wanting people to worry about her. I can't thank the family enough (including Katha, Dana's Mom) for helping me out, even if it was just answering a question I was afraid to ask. Thank you. I had only wrote 5 chapters for Dana's memorial, but while talking to Dana's Mom, she told me the following.
Dana wasn't afraid to die, but she was afraid that people would forget about her.
So, once her Mom told me this, I asked a few of Dana's friends from CF camp to write a few words about her, or a memory or two they'd like to share, that is if they wanted to.
None of us will never forget about you Dana. Never.
Answer:To talk to an angel, just open your heart. ==============================
