Merry Christmas

It’s Christmas.

It’s strange, because with everything that has been going on, it hasn’t really felt like Christmas to me.

My parents and I don’t really exchange gifts anymore… it being just the 3 of us and all…

My Dad was in Korea up until Thursday and my Mom’s been sick and I’ve had something to do just about every night. So we didn’t really decorate the house the way we used to and we didn’t get a chance to go on our annual Christmas tradition of the mad dash to the Capitol Christmas Tree, White House Christmas Tree, Local neighborhoods, and Ice Cream at McDonald’s.

Friday night, I walked into a prayer and praise service that I usually go to… After 30 minutes, everyone was just way too happy… and I walked out to my car and just started crying. I cried for about 20 minutes… I was so exhausted when all was said and done… I was worried about not making it home…

So going into Sunday and Christmas Eve… for the first time in years, I wasn’t really feeling the Christmas Spirit…

When I got to my Sunday School Class, we had cookies and cupcakes and we talked and joked and we laughed. And the funny thing was that as I looked around… I realized that my entire class was going to the Winter Retreat this week. And I felt so blessed to know that all of my students… as crazy as they can get… were involved and wanted to be there.

Then during Service, when we had our time to greet one another… I went around and my students bear hugged me and I told them I was proud of them… and I realized that I really was…

Sunday night was the Christmas Program and we had rehearsal at 4:30. So I got to church and was still feeling kind of grinchish. But I had a chance to sit down and talk to one of my friends, who is the College Group Leader… and in talking with her about the nightmare of a week I had been having… I realized that I had a sympathetic ear… and it gave me some comfort…

That’s when it happened. I went back into the main chapel where they were having rehearsal… and our Youth Pastor asked me to look at one of our Student’s hands. I looked at it and it was pretty scary swollen. After talking to him, I realized that he dislocated his thumb while he was breakdancing and had popped it back in place. And I knew that it was important that he get X-rays to make sure there wasn’t ligament damage or any breaks. Problem. His Mom was in charge of the Christmas program. They had just moved up to this area from Lynchburg about a week ago. So I found his Dad, and we drove to INOVA Fairfax. Being New Year’s Eve and all, we were fortunate that the ER was relatively empty. There were also a few nurses there that I still knew from my time in the ER. We were done by 2 ½ hours which felt like a lot to Sam, but I knew that we were incredibly lucky to get out so quickly.

But more importantly for me... I realized how completely at home and comfortable I felt... taking care of people... medically... emotionally... I basically told them what I thought had happened, what was going to happen, and how things were going to unfold... and everything happened exactly as I thought... including the diagnosis... it wasn't even a second thought or moment's hesitation when I saw Sam's thumb. I knew what needed to get done... And that might seem small to some... but for me... it was the recognition of how comfortable I was in my skin... especially as my skin evolves into that of a doctor in training...

Being a Medical Student is rife with uncertainty, insecurity, and doubts... but with the experience that I accumulated prior to starting medical school and with everything I have been learning over the past few years... I find myself feeling more sure of myself... and actually starting to feel... like I am soon going to be a doctor...

So we got back to church after we had missed the first hour or so. But as I stood in the back… I realized that a year ago, I was sitting back there as well… only I didn’t know a soul… but now… a year later… THIS… was my church… it was where I belonged… it was part of my home… the kids that went up to sing and dance… were kids I knew and loved… and by the time the little kids in Pink Gymnastics Outfits got on stage and were dancing and jumping and tumbling… I was in full tearful laugh.

It was Christmas… and as awful as last week has been… God carried me through it… and I know that I did the things he wanted me to do… and I know that I represented him in the comfort that I gave… in the lasting memory that I gave… in the work that I did with Chass. As bad as I felt for Peter… I knew that this was not a job that he wanted met to take on at the moment…

I thought about the gift that God has given me… by allowing me to love so many kids… and to be a friend, role model, brother, confessor, uncle, to so many of God’s children… young and old… I thought about where I was 5 years ago, 10 years ago, 15 years ago… and I saw how much I had changed… How all of the twists and turns that my life had taken… had brought me here… to this… and as awful as things have been… I still have so much… and even the awful… was only awful because of the loss… and there can only be a loss… if there was something there to begin with…

Today is Christmas… and the entire year… has truly been the greatest Christmas gift I could have ever asked for.

Today Sucked...

Today... was a miserable day...

The good... I slept 12 hours... I got to tell Kathy, the nurse, how much Carrie and Chass appreciated having her as their nurse the last few times they were in the hospital... I got to talk to Nicole... and I got to see my beautiful friend, Holly... I got an email from my friend, Darshita...

The bad... the debriefing session for the staff was cancelled... but I didnt' find out until I got there... my little buddy, Peter, is in the hospital... and after we had a good conversation, he had to have some stuff done... and it was very painful for him... and he was crying... and I just wasn't ready for that... I would have left sooner... but when I stepped out, he asked his Dad, "Can Kevin come back afterwards?" And I didn't have the heart to say no...

But after the procedure... he was still in pain... and he was having anxiety from all of the people hovering over him... and we tried to get back to talking again... he's such a trooper... but he was scared and he was in pain... and he couldn't stop crying... he said he was scared from the hallucinations... and he was telling me where he was seeing people... and I could feel the tears coming... because this is never a good thing when they start to see people... and I told him he had nothing to be scared of... and that the hallucinations couldn't hurt him... and that God was with him to keep him safe... and afterwards... he asked his Dad to change him... and I had been there for a while... and I needed to leave... and so I told him I had to go... and he started crying... but being the trooper that he is... he said, "Ok... thank you for visiting..." And I walked out of there feeling so awful...

I don't have the words to describe how frustrated I am... how sad I am... how much my heart aches...

I almost wish I lived a different life sometimes...

Please keep Peter in your thoughts and prayers... he's such a special kid... I hope so much for his well-being...

KL

Chassity's Funeral

Today was Chassity's funeral. It was a beautiful service. And her touch was in every aspect of it. There were butterfly decorations on a Christmas Tree. There were dragonflies and butteflies and ladybugs and dolphins on the programs and cards. And her coffin was decorated with some beautiful butterflies and dragonflies as well.

The service was very eloquent. The minister didn't overdo it... but he also picked some really great passages and said some really kind things.

Lori Holt gave her eulogy before I did. I couldn't imagine a better person. Her ability to stand in front of people and speak so beautifully... even though she herself has lost such an amazing little boy... just leaves me speechless.

Afterwards, I delivered my eulogy. It was a little nerve-wracking, because I didn't realize how cotton-mouthed and dry I was going to be. In the end, I think I was able to give Chassity what she wanted. Everyone got a chance to laugh along with my favorite stories of her... but in the end... all of us were brought to tears when we thought about what a kind and special girl she was. I've posted my Eulogy to her on this site as well.

I held it together through most of the service. I started to stumble a bit in the end. But I held it together.

On the way out, we were each able to take a butterfly ornament from her tree. The ornaments were beautiful. And I couldn't imagine a better way to remember her.

After her service, at the burial, we put stickers of butteflies on her funeral as we passed by to say goodbye... and we got to release blue, pink, white, and purple balloons into the sky.

Ironically... one of the pink balloons got away first... and was way ahead of the rest, much like Chass herself.

Her burial site is in the mountains... surrounded by large fields full of horses and barns. It's really beautiful. And it was all the more special, because I knew that Chass had selected this location.

Afterwards, we went back to their house... and we ate... and we talked... and we laughed...

It was great to see some of the kids and the families that had been through treatment with Chassity... I got to see Marshall and his girlfriend, Marie; Ashleigh, Heather, and Penny; Parker, Mark, and Kathy; Loren and Susan; Peter's Mom; the Felds; Beth; and of course, Lori.

There's such a special bond when you go through an experience like Cancer. And I'm always happy to see families and patients that are no longer going in for continuous treatment.

As for me... I am... exhausted... Grief is such a strange emotion... I haven't really had a good cry today... and I know that it's going to hit me at some point. But there's so much numbness. It's like your brain and your heart go into self-protect mode. All I know is that I know the cry is in there somewhere... and I just have to poke at it enough for it to come out... But until then... I just want to sleep for 3 or 4 days straight... It's strange, because my grief for every child I've lost... has been a little bit different... I don't know why that's the case... but it is...

I am very happy for Chass... because I know that she is in complete comfort and totally free of pain. Her last few days were truly miraculous. Neuroblastoma can be very painful towards the end... many patients end up having to take massive amounts of morphine. Chass was morphine free for the last 2 days of her life... and was relatively morphine-less during the last few weeks.

I was on the phone with her Mom just an hour before Chass ended up dying. And so the last thing Chass heard before she passed was that Mom had talked to me... and that I sent her love... even though I had told Chass how much I loved her many many times... it is a great comfort to know that this was among the last words Chass ever heard.

I know that many of my friends... are kind of at a loss for words... I know that different people deal with death and dying in different ways... I know that even though I have told many people about what's been going on... I have only received 5 or 6 emails or calls.... and I know that this isn't because people don't care... I know that for the most part... people don't know what the right words are...

But if I could share one bit of advice... it doesn't matter what you say... just getting some kind of acknowledgement of the fact that you are aware that I am hurting... means the world to me... and to anyone who is grieving... it's a very lonely feeling to put your heart out there and tell people that you are going through this kind of grief... and to not hear back from anyone...

I'm not sure what the next few days are going to be like... I'm sure that for the most part... no one will even know anything is wrong with me... and for the most part... they will be right... but I also know that at random moments... I will probably find myself coming undone... and fighting back tears... I know that if my friend, Darshita were here... I could bury my head in her shoulder and just cry until I can't cry anymore... because she has been there for me in that way... and I know that she wishes she could be here for me in that way, now... and if she's reading this... I hope she knows that just knowing that she wants to be there for me in that way... gives me immense comfort.

But sometimes... you don't always have your safety blanket... and you just have to carry it... and that's where I am now...

I feel like this closes a very big part of what my life was about... there aren't too many other Onc kids that I'm still close to... So I don't anticipate being in this type of position of grief again for a long time... So in a way... I am relieved to have gotten through this stage of my life... and I am grateful that I got through it intact...

I just hope for God's strength... to carry me through until it doesn't hurt so much to breathe...

It makes me happy to think about God's newest angel... and the big party they are having together... Michelle L., Nicklaus, Allie, Geraldine, Branden, Mark, Dianne, Michelle, Ryan, Michelle O., James, Edgar, Matt, Victoria, Alex, Josh, Michael, and Chass...

I just pray for those of who are still here... and are sad because we can't physically see them anymore...

Cancer is awful. And losing these kids is one of the worst experiences I have ever dealt with. But I know that it's nothing compared to how awful it would have been... never to have met them... and had the chance to walk with them... even if it was far too short a time.

My Eulogy for Chassity

Whenever I used to come visit, Chass in the hospital, she would lean over and say… “Okay… entertain me…” and then wait for me to tell her stories…

So I couldn’t think of a more appropriate way to talk about her… then to tell everyone stories...

I remember… when Chass and I first met…

I was walking down the hallway when the emergency light went off by her room.

I ran in and Chass was on the bathroom floor. Carrie was kneeling next to her with her eyes wide open and all she could say was, “Help.” The chemo that Chass was on kind of messed with her head a little bit. So she had stretches where she could walk and do stuff, but she was off in another world. So apparently, Chass had gotten to the bathroom with Mom’s help and then on the way back… decided to rest on the floor… as soon as possible.

So I picked Chass up and had her arm around my shoulder and started walking her back to her bed… but that chemo… it really really messes with the head… because as we were walking, Chass’ legs would kind of buckle every few steps and she would let out this, “Yip, yip.” And I remember just thinking, “What in the world is this child on?” But we got to the bed… yips and knee bucklings and all. And once we got her situated, I introduced myself to Carrie so that she knew that this total stranger that had walked in and picked her daughter up off the floor was actually someone who worked there and was going to be there for physical assistance throughout the day.

Later that day… when Chass woke up… her Mom told her what happened… and I guess Carrie got Chass’ attention real quick when she said some guy picked her up off the floor. I suppose that when you’re a 16 year old girl and you hear that some guy picked you up off the bathroom floor while you were in a hospital gown that didn’t cover your back very well… you tend to get… concerned…

So when I came in afterwards… and introduced myself to her… she had this nervous smile on her face… and she kind of just chuckled and said… “I don’t remember anything.” When I told her about the “yips,” … for the first and only time I can ever remember… Chass was actually at a loss for words. Seeing as how I could tell she was embarrassed, I told her, “Don’t worry. I won’t tell anyone.” And she laughed and said, “you have to promise that you won’t.” And it was our ongoing joke that I would always threaten to tell people the story, and she would scream, “NOOoooo!!”

In fact, during her last few weeks, when she was kind of out of it and not really responding to anything… I jokingly asked her, “Is it okay if I tell everyone the story of how we first met?” And in her out of it state, she started to frown and shook her head and let out a grunt.

But that was the beginning of my walk with Chass`.
From that point on, she and I shared a lot of conversations… and started a lot of trouble…

I remember Chassity as my partner in crime…

We used to talk about what it’s like having cancer… and we started talking about all of the perks…

Perk #1 – You can get out of doing a lot of junk that you don’t want to do…
We even worked out a whole routine… “Oh… I really wanted to do my homework, but I couldn’t… because I have cancer… cough cough… achoo!”

Perk#2 – You can guilt a lot of people into doing stuff for you…
“Not even for a poor little girl with cancer? Cough… cough… cough…”

Perk #3 – When you start to get bored with someone… you can just go to sleep and blame it on the chemo.

Perk #4 – You can say whatever you want and blame it on being emotional because of your medications. We worked out a routine for that, too. “Screw you! I’m sorry… I just get emotional because of my medication… sniff sniff…”

Perk #5 – You get full access to TONS of narcotics. In fact, one day she was prescribed morphine drops for her throat. She was looking at the bottle and wondering if people would buy morphine drops like they buy oxycodon or heroine. I told her, “Are you kidding? We could make a fortune! Fast, easy to swallow.” We worked out a distribution plan… what corners we would sell it on. We just couldn’t agree on what the split would be. I wanted it 50-50, she wanted it 100-0. It was a fun joke up until the day she asked Dr. Kitchens if she could go on morphine drops. Dr. Kitchens looked at her and said, “What for?” And Chass just said, “Oh… I might be feeling some pain… or something…” Smooth, Chass. Real Smooth. Dr. Kitchens looked at her and then over at me and I made out of there like a bat out of hell.

I remember Chassity… the mischievous…

During one of the first weeks I took care of her… someone handed out some goodies to the Hem Onc kids. Among the goodies they handed out were these tubes of green and blue hair coloring… I’m not sure what kind of sick mind gives hair coloring to a bunch of kids with cancer… but we definitely made the most of it. Me, Chass, and these 2 other Onc kids, Loren & David decided that since no one really had hair… except me… we would use the hair coloring to paint each other’s faces. After we had all gotten each other… we gathered in Chass’ room and took pictures. We joked around that we all looked like the cover of some bad National Geographic Magazine… The lost children of the Chemo tribe…

When Chass got bored, she thought of ways to vandalize me. One day, Chass decided to make little pigtails with my hair. It took 10 rubber bands… and about 3 hours… and in the end, my head looked like the sides of a pineapple.



One day, she decided she was going to tattoo me… with a black sharpie… I was walking around the hospital the rest of the day with “Chassity was here” written on my arms.

One day she decided she was going to get me with some water-filled syringes. And she got me… what she didn’t count on was that I had access to BIGGER syringes than she did and… I didn’t really care whether she had cancer or not.

I remember Chassity… and food…

We used to LOVE to talk about food.

Our favorite food to talk about was canned peaches… wonderful, glorious, chilled, canned peaches… We once had a 30 minute conversation about canned peaches. Then we spent an hour talking about the fact that we couldn’t believe we talked about canned peaches for 30 minutes.

She also loved to talk about Red Lobster, Olive Garden, Campbell’s Vegetarian Vegetable Soup, cabbage, and brussel sprouts…

She used to LOVE to order food… She never really ate any of it… but whenever she came in the hospital, she LOVED looking at the menus and ordering.

I remember Chassity… the National Enquirer…

Chass LOVED gossip. She liked hearing it. She liked spreading it.

If I ever wanted to know about any of my co-worker’s dating situations… all I had to do was ask her.

Through Chass, I always knew who was pregnant, thinking of buying a house, going on vacation, or had diarrhea.

When a bunch of the families that knew each other would be admitted at the same time, everyone would pull their chairs out into the hallway and talk… we called it “the porch.” And there were a couple of times when Chass was feeling crummy and had to stay in bed. When I would go into see her, the first thing she wanted to know was what was happening on the porch… who was there… and what was being said.

I remember Chassity… the smart ass…

One of my all time favorite nicknames for Chassity… I believe created by Penny Cummiskey… was Sarcasity…

And she lived up that name. Boy did she know how to dish it out…

I remember when she was in the PICU, they were giving her pre-meds for Platelets by giving her benadryl and Tylenol, so that she wouldn’t develop a reaction. The nurse asked her if she was allergic to anything… and Chass said, “Ummm… Platelets…” The nurse looked up at her and didn’t know what to say… I was about to crap my pants I was trying so hard not laugh.

While she was in the PICU, she was also told that she wasn’t supposed to get out of bed. So when it came time to go to the bathroom, she called the nurse. The nurse told her to use the bedside toilet, and Chass replied, “Umm, hello, you said that I wasn’t allowed to get out of bed.”

Whenever someone new walked into the room, it was like… “fresh meat.”

I remember sitting with her one day, when the dietician came in. Chass had been having problems with her gall bladder and the dietician was going to come in and talk to her about her nutrition. The lady that came in didn’t speak English very well and was kind of awkward and as they started talking, I knew Chass was going to eat her alive. The lady looked at Chass’ tray and was telling her that she shouldn’t be eating greasy foods. And Chass told her, “Ummm… talk to YOUR people in the cafeteria… they’re the ones that made it. I just eat what they send up. What do I know, I’m just a little girl with cancer.” The dietician looked at me with these eyes that said, “Help.” I quickly left the room. And when the dietician came out later… she looked like she had just finished wrestling with a giant alligator… and lost.

When you have trouble with your gallbladder you go on a special diet where you’re supposed to primarily eat, Bananas, Rice, Applesauce, and Toast. It’s called the BRAT diet. I think that when the dietician put Chass on the BRAT diet, she might have done it with a little extra feeling.

When Carrie told me that they had asked a Psychiatrist go into talk with Chass, my reaction was, “huhuhuhuhuhuh hah hah! Just imagining what that first time must have been like. And when she told me that Chass threw him out, I laughed even harder.

I remember feeling sorry for any of the residents that came in to see her for the first time, because they had been warned that Chass could dish it out… so they would come in walking on eggshells… and then Chass would say something smart alecky… and they would start sweating and saying, “umm and uhh, a lot.”

I remember Chassity… utterly and completely in charge…

Whenever a new nurse came in… Chass was ready to tell her how and when things were going to get done… And most of the time… all the nurse could say was, ok.

Even during her last few incoherent days in the hospital, Chassity was completely in charge. There was one night when she was surrounded by Carrie, me, and 2 of her favorite nurses, Kimber and Cameron. Chass started having some hallucinations, where she was seeing a very large bug. And it freaked her out a bit. And it was a bit unsettling. But the funny part was how she had everyone on edge doing exactly what she wanted. Cameron was going to get up and swat the bug for her… Chass screamed at her and Cameron sat very still. All of us were yelling at Cameron to stop moving and stay very still. Then Dr. Weil came in… and Chass started screaming. So Dr. Weil stopped in her tracks. And Chass was screaming at her about the bug. Dr. Weil started to walk out of the room and Chass screamed at her No. So Dr. Weil just stopped and had this look on her face of… waaaaaaahhhhhhh….. I don’t know what to do…..

So we finally started to get her calmed down… and we started telling her that we had gotten the bug. Chass asked us if we flushed it. And we all said, yes… That’s right… we flushed it… About 10 seconds later… Chass asked why she hadn’t heard the flush… We all just looked each other… Oh, we took it outside, yeah, yeah, we took it outside. None of us thought to just flush the toilet. Doctors, nurses, med students… stumped by a kid with cancer on morphine and atavan.

It was a really stressful hour and all of us were frazzled by it… But afterwards we laughed until we had tears in our eyes… thinking about how even in her incoherent state… Chass still had the entire room completely controlled… right down to every move we made…

Chassity was really something. Working on a Pediatric Floor, you get to meet some really amazing kids. But even out of that group of kids, Chassity stood out.

I remember Chassity… the kindest child I have ever met.

One of the first stories I had ever head about Chass, before I had even met her… was from one of the other kids who was going through treatment. This little 9 year old boy David was telling me about his girlfriends. And among that group of girlfriends… was Chass. So when I finally did meet her, I went back to David and said, “Hey, I met your girlfriend, Chass. She seems really really nice.” And David looks at me and says… “Yeah… plus she’s really hot.”

But Chass more than any other patient I ever saw… was so full of empathy for other kids with cancer. She never really wanted to talk about how tough it was for her. Instead, she always talked about how tough it was for some of these littler kids… or as she called them… her little buddies. When they were trying to get David to walk more, Chass volunteered to sit on a bench at the end of the hall and call out to David to come to her for a hug.

Whenever any of her little buddies came into the hospital for treatment, she wanted to make sure that she could leave her room so that she could go visit them. And when she couldn’t go visit them… the little ones would come to her room and visit her.

When she got the opportunity to meet Beyonce through a program they were having at the Ronald McDonald House, Chassity asked if her favorite little buddy, Ryan, could go in her place, because she knew how much Ryan loved Beyonce. Luckily, they were both able to go. But Chass was willing to let him go instead.
No matter how bad things were, Chass always focused on others and focused on the good. One thing Chass used to say all the time was that, in a way she was glad that she got cancer, just because it allowed her to meet the people that she did.

If you ever read Chassity’s website… and if you go through her entire journal history… you’ll never find a single time when she asked anyone to pray for her. She filled her journal with prayer requests for other kids.

Last year, when so many kids that were close to her were dying… she didn’t worry about herself even though it was tough on her… seeing as how she couldn’t help but wonder if she was next… instead, she worried about those of who were close to these kids… she worried about all of us and how we were getting through this…

She was a complete paradox. She was the ultimate diva, yet the epitome of selfless.

One of the last full conversations I got to have with Chass was over Thanksgiving weekend. We talked about her Celebration of Life party and all of the funny stories and the food and the people. We talked about her scrapbook where people left her notes… and I told her that I was sorry that my page was so lame. I couldn’t think of the right words… because there was so much that we had already said… and what was left to be said… was really just between me and her. And Chass looked at me and said, “But you have to understand that you may have thought it was lame, because you wanted to say more… but what you said meant something to me… even if it was just a few words… because I know you… and just seeing anything meant something to me… so quit saying you’re sorry… because I promise you… no matter what you think… it wasn’t lame.”

My little, perfectly selfless diva.

But we also talked about something else. We talked about today. We talked about what she wanted to be said at her funeral.

First and foremost… she wanted to thank her Mom.
Chass wanted everyone to know… how much her Mother did for her…
Chass wanted everyone to know… how sorry she was that her Mom had to go through all of this…
Chass wanted everyone to know… that her Mom was like her best friend….
Chass wanted her Mom to know… that she wished she could have bought you the world…
Chass wanted her Mom to know… that she loved her… and that she was so grateful that she had the Mom that she did…

But Chass also wanted everyone to remember the fun times that we all shared together.
She wanted everyone to remember funny stories… and remember all of the things that made our relationship with her special.

Chass didn’t want us to sit around here and mope and be sad and depressed.
Chass wanted us to celebrate her life… and remember her.
During one of her last nights, Chass and I were alone, we got a chance to say a lot of the things we wanted to say… and I sat there with her and held her hand and stared into her face. After a while, she looked at me and started to struggle to talk… and I leaned in and I said, “What is it, Chass. I’m here. What do you need to say?” And she blurted out, “Do you have a problem?” This totally threw me off and I didn’t know what to say or what she was talking about. And then I understood. I asked her, “Chass am I annoying you because I’m just sitting here staring at you?” And she nodded her head emphatically, yes. And I laughed and kissed her head and said, “Ok. No more moping.” She said, “Turn on” for me to turn on the TV. I asked her if she wanted to watch Grey’s Anatomy and she nodded yes. I told her that it was a re-run and she said, “don’t care.” Chass had had enough of us sitting around feeling sad together.

This is Chass. She didn’t live her life feeling sorry for herself. She doesn’t want us to sit here and feel sorry for her either. She wants us to “turn on.” Go out and live.
She wants us to live life.
She wants us to cherish each other.
She wants us to be thankful for every moment that we get.
She doesn’t want us to remember her death.
She wants us to remember her life… and how she lived it.

To my dear sweet Chassity,
In 2 ½ years, I will graduate Medical School and start my path as a Pediatrician. I will probably see over a million more kids in my lifetime. But during that time… I will never meet another Chassity Simone Flint.

Every time I see a ladybug, a sarcastic comment, a can of peaches, an x o, campbell’s vegetarian vegetable soup, a wild cherry slurpee, red lobster, … a dragonfly…
I will remember your beautiful smile and your kind, gentle heart.

Thank you, Chass, for your friendship.
Thank you for sharing your time in this world with us.
Thank you for your love.
Know that I will always remember you,
And that I will never forget that God gave me the privilege of walking side by side with one of his angels.
Thank you, Chass. I’ll love you forever.

Chassity has conquered

My friend Chassity passed away today at 4:30 p.m.

She died peacefully and without pain...

I hate cancer.

An Update on Chass...

Chassity is still resting…

I was very fortunate to have the opportunity spend a lot of time with her this weekend.

Friday morning was really special for me. I sat with her so her Mother could go run some errands. She was asleep for most of it. But as I sat there reading Respiratory Physiology Notes, she kept opening her eyes to check if I was still there. Every 15 minutes or so I got up to stroke her head and touch her face…

As much as I enjoy talking… as much as I enjoy conversation… the thing that I cherish the most in this world… are the Quiet moments we share with people that we care about… when the way that people feel for one another… is just palpable… and unspoken…

Later on, when a bunch of her family started to arrive, I stepped out and got a chance to spend some time with another incredible kid with Neuroblastoma named Peter. Peter is really something else. He’s been fighting NB for what seems like 7 or 8 years now. He is extremely small, but has the intelligence, wit, and guile of a savvy 40 year old. He has often said that he wants to be a chef when he grows up, so we usually talk about cooking. Hearing this guy talk about recipes, you would think you were talking to an executive chef from the Culinary Institute of America. I discovered that he has a new passion… Saltwater Aquariums. He has a 90 gallon tank with a ton of beautiful saltwater fish. He’s basically got the entire cast of Finding Nemo in his tank. He showed me Video footage of his fish in action. Listening to that boy talk about fish… I was in complete awe… but still it breaks my heart to see such an incredible Young man with so much passion for living… have to fight this awful disease… Luckily… he was going home the day I saw him…

Saturday night with Chass was rough… I don’t want to go into a lot of detail… because it was pretty intense… but if this paints a picture, I was with her until about 1 a.m. and I was grateful to have been there, because I seemed to be able to calm her down…

As of now… she was given the option of going Home for the remainder of her time on this world of ours… And she has chosen to take that option. So tomorrow, she will be given the sirened limo service back home where a new hospital bed and freshly delivered oxygen tanks await her. Since she was unable to get her Make-A-Wish to DisneyWorld, Make-A-Wish instead is delivering a 50 inch TV, DVD Player, and Xbox with some games and DVD’s. I think her brother will be enjoying these things more than her… but you have to know Chass to understand how much happiness this will bring her…

I wish I could be with her... but I have things that need to get done. I have my Respiratory Exam on Friday... And I was excited to see that I got the latest possible time slot... so that I would have more time to study... God has truly blessed me with His grace through this... because he has lifted the heaviness of my heart and given me some clarity of thought... and I am able to sit in front of my books and actually read without my mind being a thousand miles away...

I want to thank all of you for your support… I would especially like to thank, Darshita… She has been there for me in a way that I can’t begin to find words for… I wish I could bring you into my heart for a split second so that you could truly see the gratitude I feel and the comfort you have given me. But please know that… Sara, Dapo, D.Bux, Tina, Char, Becky, HyeMi… I have appreciated your kindness and support through all of this as well… and I thank you…
Please keep Chassity and her Mom, Carrie in your prayers. They’ve been fighting a very long 3 year battle… I am hoping so much for this situation to find resolution for them…

Thank you,

KL

A Reply to a Kind Comment. . .

Hey everyone,

I received a very kind comment to my last Post and as I was replying
to it, I decided that I wanted to share my reply with others.


Hi Michelle,

Thank you so much for your kind words and your prayers.

I am a 2nd year Medical Student at the Medical College of Virginia. But before I got into Medical School, I spent about 3 years working as a Clinical Tech on the Pediatric Oncology Floor of INOVA Fairfax Hospital in Fairfax, VA.

I understand what you are saying about survivor's guilt... Neuroblastoma in particular is tough, because there's a dramatic difference in the outcomes for kids who get diagnosed younger vs. those who are diagnosed as teenagers. Part of the reason why I hate Neuroblastoma so much is that it's so hard to know it's there during the early stages.

But the thing is... we don't get to choose our outcomes... there's no rhyme or reason... why does any kid have to get cancer? If I've learned nothing else from Chassity and the thousands of kids that I worked with... it's that ultimately... the WHY doesn't really much matter... the big question is... what are you going to do with what you know...

People have often said to me that they can't believe I worked in Peds Oncology… and how sad it must be. There is no denying that when we lose a child to cancer… there are no words to describe the pain. However, working in Peds Oncology (and I'm sure you experienced this during treatment), introduces you to families that truly know how we should be living our lives.

Chassity has said to me on many occasions… "You know, people think I'm weird when I say this, but in a way, I'm kind of glad I got cancer, because if I didn't, I wouldn't have had a chance to meet the people that I did or spend all this time with my Mom the way I did."

Like I said… I do understand what you are saying about survivor's guilt… because I see it an awful lot… and it's so difficult to understand how one child survives and another doesn't... but the ultimate gift… the ultimate affirmation of Chassity's life… would be to live the rest of your life loving your children with all of your heart… and supporting other families and kids with cancer.

Chassity has taught me so much about living a thankful life. I am thankful to hear that your daughter is healthy and well and cancer-free. If you read Chassity's website, you will see a young woman who sees that life is too precious to worry about... it is something to be treasured and lived to the fullest.

One story that I left out from last night...

After an hour of sitting there and holding her hand and touching her face... Chassity started really putting a lot of effort into talking... and when I leaned in... she said, "do you have a problem?" It totally caught me off guard... and I said, "what?? no!! why?" And then I saw the look of an evil smile on her face... And I asked her, "Why? Is it bothering you that I'm just sitting here staring at you?" And she nodded very emphatically and worked real hard to speak again... and said, "Turn on." Which meant turn on the TV. So I asked her if she wanted to watch Grey's Anatomy... and she said, "Yes." And I told her it was a rerun... and she said, "Don't care." And then she smiled and drifted off...

Apparently, there was only so much mopiness Chass could handle from me.

Just a gentle reminder to me... don't sit around and be sad... keep living... that's what it's there for.

Thank you again for your comments!

Here is a link to Chassity's website.

www3.caringbridge.org/va/chassity/


KL

My Visit with Chassity

To clear up the confusion...

Chassity is a young lady with Neuroblastoma. I have known her since she first started getting chemo 3 years ago. She and I have grown very close over the years. We have been email buddies, we've been entertainment buddies in the hospital, and at times I've been her therapist, her caregiver, and her surrogate best friend. I've spent more time keeping her company than I have any other kid I've worked with.

She relapsed last Spring and has been on hospice since August.

She has been getting progressively worse over the last few months. At one point in June, she was in a coma and the doctors thought she wasn't going to make it much longer. She got out of the coma... and had a pretty good summer... but since October she has had more and more difficulty with walking with movement with talking. As the cancer has been spreading, she is in more pain. When I saw her over Thanksgiving, she was limited to pain free movement in her left arm only. And she was having greater and greater difficulty talking.

When I posted on Wednesday, her Mom had called to tell me they were in the Hospital... and it was looking like this was going to be the last visit. Her kidneys are failing on her, she is getting platelets almost everyday, she is almost constantly out of it, she is unable to move herself, she is unable to really talk, and she doesn't seem to respond to people that well.

So....

I had a chance to visit with Chassity tonight.

I had decided that I was going to come up early so that I could spend some time with her. The doctors are thinking that she is going to pass this weekend. And I wanted to get some time with her while she might still be kind of together.

So, I drove up… I’ve been kind of a zombie since I got the news that she was in the hospital for what was likely to be her last stay… I think my brain went into emotional shock.

But as I started driving… I think the full weight of why I was on the road started to hit me… and I began to cry… and I couldn’t stop… It was probably a good hour as I pulled into Fredericksburg for gas before I finally stopped.

And my heart kept getting heavier and heavier as I got closer.

But when I walked into the room… She woke up for me.

And I got a big smile… followed by a bunch of small ones.

And all of the weight began to lift… and all that was left… was a clarity of purpose… and I knew I needed to be here...

She’s not really completely with it at the moment. Between the medicine and the cancer, she’s unable to really talk. And for the most part, when she opens her eyes, she doesn’t really seem to be focusing in on anything.

But I got a lot out of her. From what I'm told, it was the most activity that she had shown all day.

Her Mother said she was jealous… but she also said that she thought Chass was kind of waiting for me.

At one point, her Mom pretended to be jealous and jokingly asked if she wanted her to leave, and Chass nodded yes. So Mom laughed and she left.

It’s amazing, because the one thing that I really prayed for on my way up was that I get to spend some time with her on my own… because it’s so awkward to say what’s at the bottom of your heart with a bunch of people watching you….

When I got there, she had a few relatives there… but they all kind of slowly left… and here I was… with the opportunity that I had been praying for…

And while we were alone… I got to tell her that I loved her. I got to tell her how proud of her I was. And I told her about how many families and different people she had had an impact on. I told her that there was hardly a single person who had met her, that did not walk away a better person. I told her that I would never forget her. I told her that there was always a special place for her in my heart. I told her that she was one of the most beautiful people I had ever met on this earth.

And she nodded for me, and then she started to try to say something… but it was tough for her to get the words out…

I tried to help her along, but she was having too much trouble and she was getting frustrated… and I think that breaks my heart the most with kids that are dying… is when they get to the end… and they want so much to be able to say and do things, but their bodies just won’t let them anymore… and so I told her that if she is trying to tell me that she cares for me or that she loves me or that she wants to thank me… that it was okay… I already knew… and that seemed to give her some comfort...

But there’s more…

You see over Thanksgiving weekend, this amazing young woman had asked me what I was going to say at her funeral… because she knew that I would be doing the eulogy… and she asked me if I was going to say anything about her Mom… and she wanted to make sure that her Mom got the acknowledgement that she deserved… for all of the sacrifices her Mom had made… for all of the work her Mom had put into taking care of her…

So, during my time alone with her, I told her that I would remember to tell everyone how thankful she was to her Mom… and tell everyone about all of the things that her Mom had done for her and how much she wished she could give her Mom everything in the world… and she nodded…

I asked her to look out for me… I asked her to say Hi to James, Dianne, Ryan, Edgar, Mark, Geraldine, Branden, and Michelle. I asked her to be my Guardian Angel.

And she looked at me with very big eyes and she nodded and reached for my hand…

And I thanked her... I thanked her for her friendship... I thanked her for teaching me so much about strength and what is truly important in life... I thanked her for allowing me to walk with her during this part of her journey...

I am so grateful that I got a chance to say these things…
I am so grateful that I got a chance to tell her how much I cared.
I am so grateful that I got to touch her face, that I got to hold her hand, that I got to kiss her forehead... because I know that a time is coming soon... when I won't get to do any of that...

To all of my friends who are reading this…
Please do me a favor…
Call someone you care about… and tell them that you love them…
Find someone you care about… and give them a hug…
I am so blessed to have had the chance to say what I wanted to say at a time when she could still hear me… we don’t always get that chance…

Please continue to pray for her comfort...
Please continue to pray for my ability to carry this...

Chassity

My friend, Chassity, is in the hospital... and it looks like this is going to be her last stay...

... I hate cancer...

Today Was A Good Day

So I’m back from another weekend in Fairfax. The past few days have been incredibly interesting… and I’m finding it difficult to really process it all… I think that I most likely am going to have to write about this in different chunks… so for now…

Church was… a truly blessed experience today…

I don’t know how many of you know this… but I teach Sunday School for High School boys. I also write Bible Study Lessons for Junior & Senior High School, and I teach the Bible Study Lessons to the other teachers. And every now and then… I also get to deliver a sermon…

This weekend was my turn to deliver a sermon…

From the moment I woke up… I knew today was going to be special…

When I got to church, I was early… and as I sat around with a few of the students and one of the Sunday School Teachers… we started talking about Medical stuff. It’s funny, because as much as I gripe about school… the bottom line is that I think the stuff I’m learning is so cool. And when I think about all of the things I’ve had a chance to see and all of the things I know I’m going to get to do… I start beaming from ear to ear. And as I talked, more and more people came in… and more and more people had questions they wanted to ask me… and I felt the accumulation of all of my years of work and schooling, just flowing from my mouth… and it was exciting. And I knew that I was ready to do God’s work today.

After the adult service, I walked through the Children’s Hall for my obligatory round of hugs from the elementary school kids. There are no words to describe the feeling of walking into a room and having a bunch of kids 4 to 12 come running up to you in excitement and wanting a hug. There weren’t many kids today… but one of them… Henry… came running up into my arms… and just rested his head on my shoulder… when another kid came up and tried to take his place… they kind of sniped at each other and Henry got kind of kicked… Henry is a pretty rough and tumble sort of kid, so I was surprised when he started crying. So I picked him up and he nestled into my neck and just held on. And as I stroked his head… I felt his love… and I felt my love pouring out to him… And I kissed him on his head… It was the best 5 minutes I could have spent that morning… And when it was time to go… I whispered to him, I had to go, and I whispered that he was going to be okay. And then I set him down, gave him a big hug… and kissed him on the head again… And he nodded and went to play.

My Sunday School boys… they blew me away. My boys aren’t always easy to handle. They all have some form of ADHD. They are kind of rough and crass at times. But I always know that they have a good heart. I have been trying to get them to do their Quiet Time... and it has been a struggle at times. But when I came in… I found out that 3 of them had done their Quiet Time… 1 of them… actually did it 4 different days. I was stunned. My most difficult kid, Michael… is also I think the smartest… but the hyperactivity component of his ADHD is off the charts sometimes… In the past, when we had talked about Quiet Time, he told me that all he had was a King James Version and he found it hard to read. He recently had a birthday… and I decided that for his birthday… I would give him the Student Bible I had bought for myself this summer. It cost a bit of money when I bought it… but the thought of giving him a chance to really embrace his growing sense of being a Christian, outweighed any need that I had for it. I still have another Bible to use… I can always use the internet as well… So I pulled him aside and I opened up the dedication page of the Bible and I signed it over to him. He hugged me and said he would keep it forever. It doesn’t much matter to me if he is able to keep it forever or not. It was his reaction that meant so much to me. Then during Bible Study, they all were as focused on the lesson as I have ever seen them… and we had a kid who had come once before, come again… and afterwards he told me he was planning on coming back every Sunday now and wanted a form for the Winter Retreat. And I couldn’t believe what a great day I was having.

Then… it was the Youth Group WorshipService... time for me to speak… And from the minute I got up… I knew that the whole day… was building me up for this. I talked about some of my Peds Onc kids today. It’s a topic that’s so near and dear to my heart. I had written a full sermon. But the truth is… I didn’t need it. My message came pouring out from my heart. Because I wanted to talk about their lives… and how much these kids taught me about truly living a thankful life.



And as I looked out at our Youth Group… I saw faces that were laughing along with the funny moments I shared with them. I found them falling in love with these kids in the same way that I did…

And when I talked about their passing… When I talked about their last moments… and the love that these beautiful kids shared with everyone around them… even as they were dying… I saw our Youth Group… crying with me… And I realized further… that their tears weren’t just about the sadness surrounding the kids I talked about… their tears were also about the pain and sadness in their lives… their tears were about wanting to be thankful in all circumstances… but knowing that it was hard because their lives are painful right now…

Afterwards, I found one of the kids in particular… and I shared a special hug with her… and I felt her pouring her tears into me… and I was so thankful… that God chose to use me in this way… today… and I recognized the parallel… with what happened with Henry in the morning… with what happened with Michael during Bible Study… with the experiences I had with my Peds Onc kids… and I saw clearer than ever… the path God has chosen for me… and my reason for being on this earth…

We all have a calling. We all have a purpose. I am so grateful… to have the privilege and blessing… to be called to care for the kids I meet… in whatever manner they may need it.

Today… was a good day.