Almost a year...

It's been almost a year since I posted, but I decided this year that I need to write more about work.  It turns out that my profession is really emotionally involved and takes a lot out of me.  Except that I can't show that at work. I have to maintain my professional relationships and demeanor and so...there are tons of things that happen and that I get involved in that I just kind of stuff away and never get to process.  I decided that I think writing will help me.  Today is probably just a sad story sort of blog because there have been a lot of things on my mind that are super sad. But not all my posts will be so sad.

Ok- birthday wishes-
I met a girl who was 10 years old.  I met her the day before her 11th birthday.  She has osteosarcoma.  She was in the hospital for surgery on her leg- they removed all of her tibia except the last two inches or so. They replaced it with a metal substitute and then added a metal joint to the end of her femur to essentially make a knee joint. She has lost all her hair from chemo. The day I met her, she was very sad.  She had an epidural in her back, a couple of IVs, and a foley.  She was so afraid her foley would fall out. Her birthday wish- to be able to sit in a wheelchair and go downstairs (off the unit) for her birthday party.  The visitation policies right now are extremely strict because of the flu and RSV and so her little sister and her friends couldn't come see her.  The first day I saw her, we tried sitting on the edge of the bed.  It was the first time she had been up since her surgery and it took 3 or 4 of us to actually make it happen.  The next day was the wheelchair. I won't lie- I was really nervous.  I didn't know if she could tolerate it for a minute let alone a couple hours for her party.  But she was a trooper! We walked in and it was a different girl.  A birthday girl. She had cute new earrings and was all smiles.  Even though she was so scared, she let us put her in the chair and even helped move and position herself.  She was amazing.  And two hours later she was still up and at her birthday party. Opening presents, smiling and enjoying her family and friends.  It was a beautiful scene. I look at her and think how---sometimes you have to grow up so fast.

Firetrucks and Ladders-
I have been treating a 3-year old boy with cancer- I think it is histiocytoma. He is so precious.  The first time that I met him we put together a puzzle of a firetruck.  Then he showed me his toy firetrucks and his toy ambulance. I mentioned to his mom and grandma that I saw a firetruck on the Saturday before putting the ladder up.  His mom quickly explained to me that they came for him.  His daddy had called a couple of fire stations to see if one of them would bring their truck with a ladder and climb up to his window.  Apparently both fire stations got back to them and they just had one come for now.  They drove the fire truck up to the building and put the ladder up to his 5th story window. Apparently they came up and waved to him and he showed them his firetruck through the window.  While they were there, they went down the row of kids windows to say hi. He loved it. When I saw him he was pointing out the window and saying "ladder", "ladder".

Since then I had seen him a couple of times and every time he just charms me.  He likes to stand on the "bench" that is by his window and see the cars pull into and out of the parking garage, and down the busy street.  He watches for ambulances and when they come by he says "ambulance", holds up his toy ambulance to show through the window and says "sick, sick".  His mommy says- yes, they are going to help someone who is sick! On Thursday he showed me his new car track.  It hangs on the door- which his mama loves cause it doesn't take up floor space. He has two buckets of cars- one to catch the cars when they get to the end and one to put the cars onto the car track. He would squat down and pick up the bucket and hand it to me, then choose a car and put it on the track.  Later he was playing with his airplanes and helicopters. He would "fly" them and "crash" them (so then he would have to squat to pick them up).  It was so sweet.

As I talked to his mom my heart sort of broke. For one, they live about 45 miles or so west and her husband is in the marines so he works quite a ways south of the hospital.  With his commute into work and the amount of time they spend in the hospital, they are going to have to find somewhere to move because they can't do all the driving they are doing now.  I asked if she knew when he was going to get to go home this time.  She said she had no idea, but from the reading she has done, the kids who actually make it through this kind of cancer are usually hospitalized for at least 6 months in order to get the treatment they need.  Apparently last time he tried going home after a course of chemo, he didn't do well at all and so now...he's just in the hospital. 7 weeks down...who knows how many to go.

How very mortal we are and how fragile is life.  I can't imagine watching my child play everyday and not knowing if he will be here next year. I can't imagine watching him have to go through treatment so intense that it just makes him ill- nearly kills him- in order to try and save his life.

Friday nights- just over a month ago I started treating a two year old (whose birthday to turn 3 is tomorrow!).  He is SO cute.  He has a heart disease and another genetic disease that are both very rare and basically unheard of in combination.  He has about as many doctors as I have family (which is truly saying something). His mom is so kind and so loving and so amazing. Unfortunately, very soon after his birth, his father left them. So now she's a single mom doing this alone.  She can't work because she has to take care of him.  I don't know how she makes it. I don't know if she does either. The week that I saw this cute little boy the first time he made me happy.  He smiles and plays and can't but definitely lets his personality shine through. And it's a very happy one.  Mom and I were talking about his medical diagnoses and basically his last ECG showed that his is nearly always having seizures.

The next week, mom came in and told me that the Friday before he had this massive seizure.  His O2 sats drop when he has seizures, and so she and the nurse ended up having to do CPR. Trip to the ED- she said to me...I thought it might be my last day with him.  But no- the next week he was back to normal.  Now this has happened 3 of the last 4 weeks. Three of the last four Fridays she was in the ambulance with him riding to hospital, sobbing because she thought he was going to die, right there in her arms. I just...I don't know how she even does it. I don't know how she finds the strength to stay put together. I guess she does it for him.

Today she was telling me about her boyfriend's daughter and how sweet she was.  She was at the house last Friday when the seizure happened and after they loaded mom and boy into the ambulance she said to her daddy- can we kneel down and pray for him? So she prays for him every time he gets sent into the ER- and even comforts the mom- patting her on the back and saying "it's ok. He'll be ok".  Mom says that her boyfriend is very open- they are all very open. Any day could be her sweet sons last day on this earth, but that's ok. Everyday he is here is a blessing to us. She also told me that this man's daughter decided on her own that when she participated in jump rope for heart she would raise money in this little boys name. She raised $450. I almost started bawling when she told me that. Life is so hard. So hard. And yet people come through and are so strong and amazing! It breaks my heart and gives me strength all at the same time.

Breaking the bad news-

I have another patient- a young girl, who has a very rare disease called Pompe's disease. Her parent's wrote on her intake for that "she is one of the first survivor's of Pompe's disease and maybe the only girl". Over a year ago she had some kind of fall and she's lost her ability to walk. Today dad asked me if this was her disease getting worse (because it is degenerative) or not. I had to tell him that yes, I think that she has dengenerated since the fall. I don't think she will ever be as functional as she was before that- but I think she can make progress.  I do believe that. I think she can progress. But my heart is kind of breaking because the more I work with her, the more I wonder how much progress she will make.  I don't think she will ever walk on her own again.  I hope she will stand. I hope she will do a lot of things, but...things don't look terribly hopeful.  How do you tell that to someone, but also maintain enough realistic hope? It's so...bizarre. It still makes me feel so weird that I am involved in people's lives like this. I help make or break their dreams.


Whew- that's enough for one night. I have some really interesting cases right now that are worth writing about. I need to start writing more. Get out the experiences that I have. They aren't even my experiences. They don't belong to me. They belong to these families and I just observe them. I just experience a fleeting moment but somehow, they burn themselves into my heart.