My hero

Since her diagnosis over a year ago, I think my sister had one whole day where she was angry. That’s it. There has been no “why me?”.  No pity party, no moping. The girl can’t stop moving. Her husband has to yell at her to stop vacuuming so she doesn’t hurt herself.

We were talking last night when she mentioned that she looked back on her life a while back and realized what an amazing life she has had. She had very little go wrong. She worked very hard, and she was financially secure. Her marriage is great. This just hit out of the blue. Instead of crying and sleeping all day like some, she chooses life. No matter how crazy this journey is, she is choosing to enjoy it by spending time with family and loved ones. She is happy, positive, energetic, and stage IV.  She amazes me.

This just goes to show you that no matter the odds, we have choices to make in how we deal with things. While I suspect I would be the one sleeping all day, she goes. She has great hope and faith in God.  I think that’s a really important key.

She also chose to try to help others on the same path. Talking to other patients, but also starting a support group and working on a 501C3 status has been important for her to feel vital and give back.  Know what?  It helps the rest of us, too. I can talk to her like nothing is wrong on the good days. We can talk about stupid, trivial things and it’s no big deal. We can also talk more on the serious subjects that really matter.

It sounds so cliche but truly love your people. You never know what tomorrow may bring.

Colon cancer- the bad gift that keeps on giving.

Oh, you have no idea how much I have wanted to write about this!  My amazing sister- my hero- doesn’t talk about it unless she wants to, and I have not wanted to go against her wishes.  Lately I really feel like I NEED to talk about it, which is convenient since I remembered that this lovely blog is anonymous!  (Ok, apparently it isn’t.  But since there have been zero views in years, I think it’s safe to publish.)

Little background- she was adopted by my parents before I was born.  She has always been the brilliant one.  She always had extremely good grades in school, and it seemed effortless to her.  She could play pretty much any instrument that she picked up.  Everyone loved her, she has always been very down to earth.  I was always pretty much her opposite.  Of course, as her sibling, she was horrible to me until after she left for college.  She moved out of state, and soon enough our family all moved to be closer to her.  That is where we started to really become friends.  Eventually I had my own family, including two babies born a year apart.  It was very difficult to leave the house, and she didn’t really get it.  We started to grow apart after she moved out of state for work.  She was always so busy with work that it was a struggle getting a text or call returned.

Last July she came to visit with her husband and son.  They figured a fast weekend visit for the 4th, and then back home to work.  She had the job that was extremely important; she was being primed to retire as a vice president.  We were all extremely excited to have her come visit, especially because we hadn’t seen her son since he was an infant; he was 15 months old at this point.

She called me to say that she was feeling so bad that she needed to head to the emergency room.  That was unsettling because we knew that was very unlike her to stop or slow down for anything.  It didn’t take long before the ER doc came in to say that she had colon cancer that had likely spread to her liver.  She had surgery the next day.  The surgeon told my brother-in-law that chemo likely wouldn’t do anything except prolong her life by a month or two.  He had to tie off her colon because it had ruptured.  So, at 42 she had a really cool colostomy bag and a death sentence.

It didn’t take long before she found out about a fantastic oncologist in our area that had saved a family member of her husbands.  She couldn’t do anything for a month after surgery but wait. She stayed with her husband’s family for a while because they had the perfect situation. (Eventually they just moved here.)  It was really hard on them all around. Finally they started her on the FOLFOX regimen with Avastin as a helper, and she settled into her new life.

It has gone up and down.  Of course, she felt sick with the chemo, but honestly she seemed more well than so many people I know.  She hasn’t lost her hair, and the fatigue that you hear so much about took her energy level from high energy to normal energy.  She juiced, cut out processed sugar, and ate right.  You would never know she was sick.  However, things happen that people wouldn’t know.  Like, the colostomy site used to get irritated and bleed a little bit.  I’m sure that’s annoying, but not a huge deal… until you have no platelets clotting for you.  Then it suddenly becomes rapid blood loss.  She has almost died a few times because of that.  The last time in particular; she hemorrhaged on the surgical table.  Passing out due to blood loss kind of became her thing.

Finally, the surgeon was able to fix the colostomy site so it stopped bleeding.  She had a glorious two months or so without bleeding.  Everything seemed to be going well, except that her body became used to chemo.  WHAT???  How is that possible, right?  They switched her chemo a few weeks ago.  We are really, really hoping that it starts working quickly because now the tumors are blocking the blood flow to the liver.  The blood is backing up into her esophagus, which caused her esophagus to hemorrhage.  It feels like some sick TV show where you have to out-think its next move.  What will go wrong next?  Will the cancer spread and shut down her liver or can they reverse it before it’s too late?  These are the questions that keep us up at night now.

I am at a loss.  I am very thankful she was able to move here and be closer to us, but I really wish everything could go back to normal.  I am thankful every day that she is such a fighter.  She isn’t letting any of this slow her down.  Mentally she is in a much better place than most people would be.  She has her toddler to stick around for, so she will fight until she can’t anymore.  Hopefully this new chemo will put her into remission and she will get a break.  As tough and strong as she is, and as much as we pray and love God, I would count on remission soon.  However, we can always use prayers. Please pray for her, and her family.

Changing blog homes

Because of the added utility, and since I have decided that I no longer need to be anonymous, I am changing blog homes.  My new blog will be at:

http://deetiptonjra.blogspot.com/

When I first started this it was meant to be an outlet.  I don’t really need to stay anon because I have decided that I want to share Emily’s story with the world.  I guess I didn’t think at first that so much would revolve around her and her disease, but I guess that’s something I’m meant to do.  Somebody has to get the word out!  Thank you 🙂

A great day at the arthritis walk!

Well, we all stayed up too late Friday night, but despite that we had a great day today.  I wish that I were a more organized person, & not a procrastinator.  That would help.  Had I done things when I had thought about them, I would have had t-shirts made professionally for our walk, and I would have organized a fund-raiser.  This year has been such a flurry of activity!  We’ve finally gotten Emily’s arthritis to where we’ve mostly adjusted, though the Raynaud”s still throws me for a loop.  We went from almost never going anywhere outside of work for me and school for the little people to never being home.  We went from no activities to club days for Ashley and scouting for both little guys.  It’s been huge for me to adjust to, but I’m really enjoying all of the chaos.  We’ve FINALLY been able to take them camping!  I was terrified to do that with Emily before.  Things are coming along, and this walk was a marker.  At last year’s walk I was still kind of reeling from everything.  She had more bad days back then than good.  I think in the back of my mind I had thought that getting her stable would mean no symptoms,  despite knowing better.  I’ll never accept it, but we are more comfortable dealing with it.

I truly believe that every day is a gift, and there are so many gifts to receive each day that people don’t notice!  I cannot say that I don’t get exasperated sometimes with my family ‘cuz I sure do!  However, I accept that we are all broken and beautiful; I’m sure not perfect so how can I expect them to be?  I still yell at my kids sometimes, but I try to treat them like people instead of clones.  That said, I think that I enjoy my children more than most.  I can laugh with them, I can be silly with them, talk to them, listen to them (generally with a lot of chuckles) and just love them.  I try to have few expectations.  They need to pick up after themselves and stay on track in school, not get into trouble and be nice.  There are more rules, but for the most part they follow them all.  My point?  So many people in this world are miserable and yell at their kids when there’s no reason.  I see them when they go to pick their kids up from school.  They walk in looking angry and when their child/children run up to them they immediately start griping at their child.  Seriously?  Kids are such a gift!  Don’t take this one for granted.  One thing that I learned through Emily’s diagnosis is you never know what’s next.  I have a list of children that I’ve been praying for since about ten months ago.  It started with Carli Slack in Tampa.  Carli had leukemia,and while her treatments successfully knocked out the leukemia she ended up with mucor, a fungus that invaded her insides.  Carli has been battling since November 2008 and she’s still in the hospital.  Then came Kate Mcrae.  Kate is now 6 and in her tenth month of battling brain cancer.  I have cried more for these and the other amazing kids on my list, but I have also learned so much from their amazing parents.  Just last week I heard about a little boy named Daxton Blanford.  Dax was only 15 months old yesterday when he passed away.  He had a large tumor in his tummy.  Isn’t that just so wrong???  I look at all of these children, those battling bravely and those who lost their fight.  I look at their parents and I think about our problems.  Seems trivial, doesn’t it?  Arthritis sure isn’t trivial, but I thank God every day for not making her arthritis brain cancer or something terminal.  Thank God that she doesn’t have the systemic form of arthritis that can and will attack organs when it feels like flaring.  I try to see the little things that God would want us to appreciate.  I turn my face up into the sun (with my SPF 70 protecting myself from any further damage) and I enjoy the feel of it.  I don’t pass by wild flowers or a rose bush without stopping to appreciate the miracle of it.  I try to get into the woods whenever I can because that makes me feel closer to God.  I could lay down in a patch of grass in the woods and listen to all the noises, appreciate the trees and the sun coming through them, all of the time. These are all gifts that we have been given.  Do you see them?  They’re right in front of you every day.  How great, how awesome is He?

I’m sorry if I haven’t made much sense tonight.  I’m actually very tired, but I felt compelled to write.  Maybe someone that needed to hear that will actually read this.  God works in mysterious ways 😉

Just blessed

More days than not I get up just feeling glad to be alive.  On these beautiful days the little people are so good, sweet & cute in the morning that I don’t want to leave them at school.  It makes me sad to leave them, but after a long day at work picking them up almost feels like we’ve been away forever and can’t wait to see each other.  When I get home, Ashley wants to talk all about her day… the good and the bad.  After dinner and a fast nap it’s time to go to scouts.  The worst part about that is that my little girl won’t stop hugging and kissing on me, hanging on me almost the whole night.  We get back home and the little people actually get ready for bed fairly quickly, no shots or any other meds tonight.  Ashley is once again telling us more about her day.  Seriously… why would I be unhappy?  Better yet, how could I be?  Yeah, our health issues suck.  Our financial situation isn’t the best.  I put those in God’s hands, and I focus on the important things in life, like love, children, roses and the moon.  Nope, live isn’t all peaches and roses, and it’s only about 1/2 what you make it, but you can only control what you can control and leave the rest to God.  I have the best kids ever.  They melt my heart!  They also respect me, and I respect them back.  I treat them like people, how I want to be treated.  I try to prepare them for life.  We’ve already learned that arthritis sucks, and to never expect anything “normal” with Emily.  I  wish to God, and pray daily that I could ease that pain, take it away from her completely.  Sadly, it’s out of my hands, but she won’t let that stop her from dancing around and smelling the roses herself.  I think that children are brilliant.  I think they are how we’re all supposed to be to an extent.  I delight in watching them see things for the first time.  Isn’t that what this life is about?  Love and happiness…….  Live, Laugh, Love  ❤

Camping!

Camping is one of those things that I really look forward to and appreciate.  Though as a kid growing up I spent all of my spare time outside and in the woods, as an adult I don’t really have the time, and the woods are kind of out of the way for me.  Going camping really makes me deeply happy.  I don’t care if I have company or not, because I really just enjoy the feel of the breeze, the smell of the air, the wildlife and vegetation.  Really, the whole experience.  This time we again went with our scout pack.  Ya know, I went through such a long time of not really having a lot of people that I hung out with, and right now everything is changing.  I guess I’m ready to open up my heart again.  I really like and appreciate these people.  They are such a good bunch, and so funny!  Very down to earth.  Even better, I feel comfortable around them.  That’s really cool.

Kevin & the kids headed over to the site on Friday, but since I had to work on Saturday I didn’t join them until after work.  Emily did really well.  In fact, she was tired and a bit whiny from that, but she help up like a little trooper.  Kevin worried me a bit when he told me that her feet hurt, but he finally got out of her that her shoes were too tight.  On my way over I stopped and bought her new shoes.  Around 10 P.M. Saturday I checked the news on my phone to find that Mississippi had deadly tornado activity near Jackson.  I was worried for a bit because my sister is there.  Thank God, she didn’t even see any activity where she lives.

The only other thing that may have been a tad bit sad was watching my little man.  That kid is so sweet, so smart, so funny & sensitive.  But he seems to like hanging out all by himself.  I kept finding him just sitting alone.  I so want him to hang out with friends, play tag, play army, run around.  He’d rather hang with the girls.  He’s so much like his father.  He’s just never really 100% happy.  That makes me sad.  But otherwise he’s so awesome.   I truly am blessed.  I look at my kids and I think really… how can I deserve so much?  They are so amazing, and such blessings.  Life will never be perfect, but right now it is good.    Well, it’s magic pumpkin time 🙂  Good night.

Ok, I’m serious this time

When I started this blog it was because I wanted to be able to speak my mind without necessarily sharing it with everyone.  Now that I look around and find others writing blogs like the ones I’ve been wanting to write I have to wonder- what the heck is stopping me?  The truth is, where else can I talk about how my child gets frostbite inside of her school, or how when she woke up this morning it was a bad leg day?  Or how my oldest is sad because she had 2 major disappointments in the same day?  Yeah, I went about this the wrong way.  So, let’s start over.  Hi!  My name is Danielle.  Most people call me Dee.  I have an awesome family that are all very supportive.  There’s my husband, Kevin.  We’ve been together since 1993.  Then there’s Ashley.  She’ll be 16 in September.  Next came Emily (the Princess) and then Zachary.  Emmy’s 8 and Z is 7.  They are truly an amazing group.  I am really so blessed to have them.  Yeah, we have our days, but for the most part I wonder what it was that I did to find this much joy.  Kevin is my equal.  I don’t mean to say that I’m just as strong as him or whatever.  That would be stupid.  But we respect each other.  I believe that marriage is about working together as a team.  Thank God he feels the same way.  We’ve sure had our issues, we’ve been through stuff, but at the end of the day when I’m tired or sad he’s who I turn to.  Next would probably be my parents.  I also thank God for them every day.  Even at almost 35 I still need them.  I really enjoy them, too.  They have also been very supportive.  I don’t want to paint us as the “perfect family”.  We have our share of  issues, but we all get along, we all love each other and like each other.

If it wasn’t for medical stuff we’d have it made.  In my last post when I said I didn’t love my life… that would be why.  Especially, at the time when I wrote that I was still adjusting to Emily’s issues and Kevin’s, too.  Kevin had his thyroid yanked in February of 2009.  He had a multi-nodular toxic goiter.  Pretty much, he had several cysts that were pressing up against his eusophagus and making it hard to breathe.  They even found a tiny cancerous spot.  Emily, however, takes the cake with the medical stuff.  With her arthritis she’s on 2 immune suppressors so she gets sick a lot.  She has arthritis in almost every joint, so she suffers from chronic pain and stiffness.  She’s been on Enbrel for about a year & a half now, and it’s helped a LOT, but she still has some issues and she’ll still flare.  She’s only flared twice, but it lasted a week, stopped a week then started right back up.  When she flares she gets what look like big hives on her joints.  She won’t always have swelling where she’s flaring, though.  She’s so brave it amazes me.  I have a high pain tolerance, but I can also be a wimp.  When I get sick (sinus infection, cold, etc.) I know I’m a whiner.  When that girl gets sick you couldn’t tell.  I can’t believe that one child can be so strong and brave, but she is.  She is my role model.  Is that weird?  I have learned so much from her;  things like how to be a better person, how one should behave… she has taught me.  I am amazed by all of my kids, and again I’m so thrilled with all of them, but she is special in a way that so few are.  And the things that she deals with every day… with grace!!!  I tend to feel not good enough sometimes.   However, I know that I pour my soul into helping her, so I guess that counts for something.

I want the world to be aware of the things that she goes through.  Mostly, when she’s older I don’t want her to have people accuse her of not being in pain when she is.  I want people to continue to help her the way that she’s been helped.  She has had the kindest, sweetest people in her life thus far.  It’s like she’s a little ball of sunshine and all of the good people are drawn to her.  She tends to bring out the best in people.  Maybe this will change when she’s older, but I hope not.  Quite simply she makes people better.  For a while, I had the “oh, woe is me/us” attitude.  Try this the next time that you feel that you have problems.  Go to http://www.caringbridge.org .  Check out a profile.  Many of these profiles are for children.  Some are older, 16 or 17 and going through things like cancer.  Then there are 6 yr olds Kate McRae & Allyson Perry who both have brain cancer.  Kate has been fighting for 9 months so far, whereas Ally fought, won, was in remission and now has a fresh, new tumor.  They are currently in different cities receiving radiation.  Or the DIPG kids.  (That’s diffuse intrinsic pontine glioma, if I remember correctly.)   DIPG has affected several kids that I have had the privledge of following.  It is an inoperable brain tumor on the stem.  It is non-responsive to chemo, and radiation is only buying time unless God has a divine intervention planned.  These kids and families go through true hell.  Arthritis sucks, it is a lifetime of pain.  But at least it isn’t being trapped inside of your own broken body.  See how I feel blessed?  I have learned so much, & I have been changed so much by our battles.  Emily’s disease has actually been a blessing in some ways.  I would never have wished that upon anyone, but it did bring our family closer.  It has made me so much better.  I went from the deep depression to truly joy-filled!  Without counseling or meds!  I want to share things that I have learned.  From accept what you cannot change, but fight for everything that you can to laugh at the things that frustrate you.  It may not change the situation but it can sure make you feel better!

The last thing to touch on tonight, the other reason that I started this blog.  Ok, we as people are ALL messed up and broken.  I know I am, and it makes me happy.  By knowing that I am free!  I wanted to more deeply explore my relationship with Christ.  I don’t know that I will be able to effectively do that or not.  If it happens it happens.  I try hard not to judge, to let people be people.  If you don’t like that, it’s cool.  Ya’ll know where that red X is.  The thing is that I love Jesus, and I want to be a better person for Him, I want to do His work, and I want to become closer still to Him in a deeper personal relationship.      Nope, I’m not a fanatic, or a cultist.  You don’t have to share my beliefs, and I won’t judge you if you’re Wiccan or Pagan, or Buddhist.  I’m free to be me, you’re free to be you.  Ok, /rant off.  I will try to post at least weekly, and definitely whenever something is newsworthy.  I can’t change the world, but it can’t hurt to try!  😉

More background story

For the most part, my life started with my children. Isn’t it funny how that works? If you don’t have children, I guess it’s very hard to understand that, but my life revolves around them. No, I don’t mean that I don’t have time to have a life, or they hog all my free time. That’s a typical response that I’ve gotten. I mean, I wasn’t complete until I had them. They can drive me crazy, they can even make me happy that I’m not capable of murder. They may talk too much. But my heart aches for them when I’m not with them, and when they’re so sweet, and cuddly or lovey I feel like my heart is melting from happiness. In truth, I don’t really feel like I NEED anything else but God and my children. Not to say that there haven’t been dark times…

My oldest child is 15, my middle is 7 and my youngest is 6. When my middle child was born all hell broke loose for us. Eventually I ended up in a deep depression. The funny thing about depression is that you may not even realize you’re depressed until you come out of it. That’s me. I don’t know how long it lasted, I don’t remember a few years at all. It’s sad that I can’t really recall my baby as a baby. The few things that I remember are that I couldn’t take the 2 babies anywhere without the Princess screaming, which would start the Prince crying. The Princess cried a LOT. She also didn’t sleep. She slept through the night way after he did, and she was the older one. I don’t think she slept through until after age 3.

We’re still trying to figure out when it started, but somewhere along the line she ended up with arthritis. She has Juvenile Rheumatoid Arthritis. Her disease is crazy. She has crazy symptoms, she has crazy side effects, and crazy associated diseases. Her hands and feet turn purple when she gets cold. She gets cold a lot. She gets crazy rashes. Parts of her body may swell at any time. Once, her feet swelled up so badly that she couldn’t walk. There was a spot on her heel, and one on each foot on the ball of the foot. It didn’t look like they were on the jointed areas. We were told it was from her Raynaud’s, which is what makes her turn purple.  As a parent, when your children get the flu or an ear infection you want only to take it away from them.  Try this:  your child can’t move her fingers and her elbow, she can’t get out of bed, she can’t walk without limping, and she can’t hold a pencil.  Think about her crying because she so wants to play… but she can’t.  She’s in too much pain.  Imagine your child in so much pain that it changes her whole personality.  Imagine your child being diagnosed as mildly autistic only to find that her whole being is a result of pain.  She was scared of everything, didn’t want to be touched, and she would flip out over the smallest things.  Since she’s been on Enbrel she’s gotten much, much better.  When she started on medicine after her official diagnosis we had to get to know her all over again.  We had a really hard first few months trying to figure her out when she was a different child every week.  I think that God made Enbrel.  Enbrel is a miracle.  And God gave us magnet therapy.  I don’t care how many people claim it doesn’t work.  I have a 7 yr old that swears by them.

We have so many medical events that just happen that I have stopped making plans. Whenever I make a plan something goes terribly wrong. The Boy breaks an arm, the girl’s feet swell up, the kids get swine flu, etc… People often don’t understand. I praise God, and feel so blessed that arthritis isn’t leukemia, that my kids aren’t fighting for their lives or terminal. Yeah, we have a LOT go wrong. But we have a lot of blessings! We are together! Our home boasts a Mommy and a Daddy! And we get along! We even like each other! No, we don’t have it easy. Does anyone? I doubt it. I can’t say that I love my life. I get up, get the kids up, go to work, come home to make dinner and clean up, and get ready for bed. We don’t go anywhere, we can’t afford anything anymore with all of the medical bills. Hell, we can’t afford our bills! But it’s ok. I have God to guide me, and I have a lot of love. Which is where this blog comes in. There are days where I am discouraged. It’s hard not to be when things keep going wrong, but I don’t like to complain. Now I don’t have to! I can just write it, and I’ll feel better. There are days when I’m on top of the world, where maybe I come to a conclusion or two that I don’t think other people will understand. Now I have an outlet. See the trend? It’s a beautiful thing 🙂

Hello world!

Hello, and welcome to my blog!  🙂   I decided to blog because we have a lot of things happening, and I have realized how much I have changed and grown since the beginning of it all.  My spiritual path has changed, grown, reformed.  And sometimes I really just don’t know how to express myself, and I don’t think people would understand.  Despite being female, I admit that I have a lot of male characteristics.  Not all of them are great.    At least here if you don’t get me you can just click that little red square up in that corner…

I was born in Connecticut, and raised in a little town that not many knew of.  I had a “charmed” childhood.  I had my problems at home, but I did so much outside of home.  I was always busy, and I really enjoyed my life outside of home.  I took dance classes, I sang, I was an actress.  The last part came in very handy.  My mother was an alcoholic, and my father was blind to the person that she really was.   The funny thing is that now you’d never know.  She still has issues, but she’s about 300,000% better.  I was a little jealous for a few years at how wonderful she was with my children, and how loving.  I never had that.  My children do 🙂

Where I had it all up north, since I was moved to the south at 16 I don’t think I’ll ever be complete here, or truly happy.   Now I have joy, however, and for that I am grateful.  Right now I’m just a lot confused.   I have a lot happening.  Well, I will be back soon with more.  I’m just about out of time now.  God bless!