Wednesday, December 31, 2008

Today I found out that Owen's dog Mazy joined him in heaven, so he has a new, familiar playmate!  While I am sad to lose my dog (who was actually in Florida with Frank's parents after Owen passed away) I am glad that Owen is playing with her right now...I miss you, Frogger.  Now and always.

Tuesday, December 30, 2008

It's getting closer to Owen's birthday.  I'm not quite sure how I am feeling about it-very mixed...I want to celebrate him and his life-I don't want it to be a sad thing, because being pregnant with him, giving birth to him and having him with me was one of the best things in my life, other than his two brothers.  He was so much fun, and I want to celebrate that-him, the wonderful person he was, the awesome times we had together.  However....obviously it will be a difficult day.  A day we should be spending with him, so very happy that he is with us, celebrating all of those things I listed above with him, letting him know how important he is to us, how much we love him and are glad he is with us... 
  Seth's stepgrandma passed away on Friday. Poor kid has dealt with more death than someone his age should have to.  Before she died, she said that she saw Owen and that he said he is doing good...I wish I could see Owen....I miss him so much-hugging him--he gave some of the BEST hugs!  His giggle--and the way his fuzzy little head felt against my face.
    Hope everyone has a fun new year's eve, and that 2009 holds more good times than bad.

Thursday, December 25, 2008

I hope that everyone has a happy holiday, wherever and however you are celebrating it this year.

Tuesday, December 23, 2008

  I wish I had something profound to write, but I don't...I hate to keep writing things like "I miss Owen", which I do--incredibly...and "Cancer sucks", which it does...incredibly.  
   Our holiday celebrating is complete-we opened gifts at my parents house on Sunday, then returned home and opened gifts here.  We will visit Matt's family on Christmas Eve, then eat breakfast at my parents house on Christmas morning, my aunts in the afternoon.  I will finally get to see my cousins-one of whom has been in town for over a week and I have yet to see...
  I went Christmas shopping on Saturday and sobbed basically through the entire experience.  It started when I saw a booth fundraising for Essential Care-which is the children's version of Hospice that took care of Owen at the end...then there was a booth for Camp Good Days-at which point I got quite emotional while I was walking away. Then I went into Things Remembered to personalize the Make a Wish ornament they have, at which point I completely lost it....yeah-people thought I was a wacko!  Then I went into Hot Topic and they had adult size Power Rangers shirts...Owen would have loved it if I had had a my own Power Rangers t shirt, so i of course bought it and cried...

  i cry every night before bed...i sometimes feel like i am going insane---so much going on in so many facets of my life. i don't know what i am doing, don't know what is going on.  i wish i had the chance to have Owen all over again-to have him for one more healthy month so i could go and do all of the things with him that i wanted to do
  I will never forgive myself. no matter what anyone says, i could have been such a better mother for him and now i don't have the chance...

Saturday, December 20, 2008

I can't honestly say that I am looking forward to Christmas this year.  There is no excitement for me-I imagine it will be like any other day, except that I will get to see some members of my family that I do not normally get to see, and we will open presents.
  We are having our (5X10 sq ft) bathroom updated, and I was in there the other night looking at the bare walls and started crying, being hit with the fact that nothing that I do will ever fix what is really wrong. No matter how I try to pretty things up, it's just nothing more than a cover.
  I hate what cancer did to my son, what it has done to our family.  I hate that it affects children...that it affects anyone.
  Nobody should have to spend Christmas without their child...

Friday, December 19, 2008

Cancer sucks...

Thursday, December 4, 2008

Yesterday was my one month anniversary for starting back to work.  I thoroughly enjoy my job, and I must say that it has helped me to be back with the students.  
  There have been several invitations for memorial type services, which I have thus far declined to go to.  It's not that I want to pretend that everything is ok, it's just too raw, too difficult for me to consider going to right now.  I may go to one, but I will have to see how I am feeling. Anthony is at one at Children's Hospital tonight with his father (it is his night with him).  I got the invite yesterday, which was too soon for me to mentally prepare myself.
 I am a minimalist this holiday as far as decorations go. Typically, I really love to decorate the house, my classroom, etc.  All I am doing this year is putting up the tree at home.  The kids don't seem to mind. I think we are all kind of just doing what we can.
 There is an ornament that I put on the tree that I bought for our Christmas in July with Owen. It plugs into the light strand. It didn't fit into the lights that were on the tree Frank brought up, so Owen never did get to see it work at home.  It makes me incredibly sad to think that Owen did not have the chance to see it work on our tree.  
 Only 21 more days until Christmas. The magic seems to be gone this year. I am trying, I really am, but it is quite difficult sometimes...
  I do still see beauty in the world, and this whole situation has taught me to give less time and thought to things which now seem so insignificant. Again, not "sweating the small stuff"...

Monday, December 1, 2008

Friday, November 28, 2008

In Lieu of Christmas Cards...

This year, instead of sending Christmas cards at all to anyone, we will be making a donation to Owen's Toy Box at Women and Children's Hospital at Buffalo, our local chapter of Make a Wish Foundation, and Give Kids the World in memory and honor of Owen and all of the children in need.

Thursday, November 27, 2008

Happy Thanksgiving

  I hope that everyone is able to enjoy the day, spend quality time with the people they love, and is able to find something to be thankful for, today and every day.

 And--Happy 16th birthday, Seth!  I can't believe that you are already old enough to drive (which is a warning to everyone else who is on the road--jk!) and that I am old enough to have a 16 year old!!  I love you.

Tuesday, November 18, 2008

Please, don't ask me if I'm over it yet
I'll never get over it 
Please, don't tell me "he's in a better place"
He's not here with me
Please, don't say "at least he isn't suffering"
I haven't come to terms with why he had to suffer at all
Please, don't tell me you know how I feel
Unless you have lost a child
Please, don't ask me if I feel better
Bereavement isn't a condition that clears up
Please, don't tell me "you had him for so many years"
What year would you chose for your child to die?
Please, don't tell me "God never gives more than we can bear"
Please, just say you are sorry
Please, just say you remember my child
Please, just let me talk about my child
Please mention my child's name
Please, just let me cry.

Saturday, November 15, 2008

Here is a link to the fundraiser that the school is doing for Owen's Toy Box!
I hope that everyone has had the chance to watch Owen's story. If nothing else, I am hoping that his story helps to raise awareness for childhood cancer, and that it helps people cherish their children, and to stop "sweating the small stuff". In life, we take far too much for granted, and we focus on things that really are no big deal in the grand scheme of life. We need to focus more on the "Big rocks" in our lives, and less on the gravel, sand, and water...
Stephen Covey's Big Rock story provided the inspiration for this month's issue.

A time management guru was speaking to a group of type "A" personalities. He placed a wide-mouth gallon jar on the table in front of him. Next to the jar was a collection of fist-sized rocks. He carefully filled the jar with the big rocks, until he could fit no more. 

He asked the group, "Is the jar full?"

Everyone responded, "Yes." 

He then pulled a large bowl of gravel from under the table and proceeded to pour the gravel into the jar. The gravel fit into the spaces between the rocks. He again queried, "Is the jar full?"

"Probably not," was the group's reply.

He reached for another bowl, this one filled with sand. He dumped the sand into the jar. The sand filled the spaces not taken by the rocks and the gravel. Once more, he asked, "Is the jar full?"

"No," everyone agreed.

Finally, he reached for a pitcher of water and poured water into the jar until it was filled to the top. The time management guru looked at the group and asked, "What is the point of my illustration?"

One man replied, "That no matter how full your schedule is, you can always fit one more thing into it."

"No!" the guru responded.

The point of this illustration is, "If you don't put the big rocks in first, you'll never get them in at all!"

The moral of Covey's story is: Get the important things figured out first, make time for them above all else, then fit everything else in around them. In other words, know what your priorities are....make sure you are spending more time on the "big rocks" than worrying about the "water". Don't sweat the small stuff. In the end, it isn't what truly matters.

Thursday, November 13, 2008

Here is the link to the WGRZ web site where you can read about Owen, and watch the video...

 I am hoping that bringing Owen's story to the public will help to raise awareness for childhood cancer. Awareness+research=a cure!!

  Missing Owen....

Wednesday, November 12, 2008

Tomorrow Channel 2 (WGRZ) will be airing a two minute segment on Owen's inspirational life on the 11 o'clock (PM) news!!  Set those DVR's and I will be posting a link to their web page when one is available!
  I got a glimpse today of how difficult Christmas will be this year when I went into a local drugstore. The first thing I see in the window is a Chia Pet Scooby Doo-which was the number 1 item on Owen's Christmas list last year.  The, of course, all of the decorations, and music, etc...My little Frogger loved the holidays-who doesn't?  

  Missing Owen......

Saturday, November 8, 2008

One month ago, Owen passed away. Things I have realized since then---1.) Him being gone doesn't get any easier without him, in fact, I think that time has made it more difficult.  Reality has set in.  2.) There is a difference in knowing something, and in believing it.  I knew he was gone a month I am starting to believe it.  3.) Love doesn't die when a person does. Last night when I was feeling particularly sad about something unrelated to him, the Build a Bear that he made me went off, and Owen's recorded voice said "I love you".  It happened again today.  Normally, the only way it goes off is if I specifically press it-I sleep with it nightly, and no matter how much I move, it hasn't gone off accidentally.  He was sending me a hug for sure...
   The first day I went back to work, I kept picturing how excited he would be when I would return home from somewhere, and how happy it made me to see him. I had to face the day knowing that his smiling face, giggle, hugs, kisses, and sweet voice would not be there when I returned. Sometimes, on bad days, that was enough to help me get through.  He was the one and only person who totally and completely loved me without expecting anything in return.  I have pictures of him looking at me, and I can see that love on his face, in his eyes...I hope he knows it was recriprocated.
  Missing Owen...

Friday, November 7, 2008

Tomorrow, it will be one month since Owen passed.  This week, I have been watching some videos of him-he makes me laugh, even now...

Monday, November 3, 2008

It was my first day back to work today.  It was good to be back-I did get to see some friendly faces, which was nice.  I did think about how Owen used to get so excited and greet me when I returned home, and was quite sad with the realization that he would not be doing so.
  It was a beautiful day out, though!  Supposed to be warm for a few more days, which is nice-at least I don't have to worry about snow boots yet!
  Missing Owen...

Saturday, November 1, 2008

I hope that everyone had a fun Halloween.  I liked watching the school parade, wishing Owen had been in it, although he certainly would have been in a wheelchair, as he would not have been able to walk all of that way.  He would have loved it, though. I wonder what he would have chosen to be? He wore costumes frequently, so trying to decide on one might have been a problem!
  Anthony was all in camoflauge.  He did pretty well with receiving candy. So well, in fact, that he didn't mind handing over some of my favorites for my consumption!
   We didn't carve pumpkins this year, and I was a neglectful mother and didn't send anything in for the class Halloween party. Hopefully, I will do much better with that in years to come.
 Missing Owen...

Wednesday, October 29, 2008

It has been three weeks since I last held or saw Owen...
   I will be starting back to work on Monday. I am not sure that I am 100% ready, but I doubt that even if I waited 5 years that I would ever truly feel ready to go back.  However, it will give me purpose during the day, and I will be able to be productive.  I do really enjoy working with the students, so I am sure that once I am back, I will be certain that I made the right choice.
  Today, I had to drop something off at the school, and while I was there, the school bus and some parents were dropping off the children who would have been Owen's classmates for pre-k.  I am not sure why the whole school issue makes me so sad-maybe because I know he would have been so excited to go and learn, and to make friends, and that he will never have the chance to do that now. I had the opportunity to have him spend a few classes at another pre-k in the spring, but never did take him due to therapies, etc. Now I am wondering what would have been more important to Owen. He would have loved going to school. I so wish I would have taken him...

Sunday, October 26, 2008

Please know that I do appreciate your emails and phone calls. I am sorry I haven't returned them as of yet. I am still just trying to adjust to life and find my direction again.  I love you all and so appreciate your thoughts and support, even if I don't respond to it.   

Saturday, October 25, 2008

 I am starting a new blog-it is called "What are we having for dinner tonight?" and will hopefully take off!  I am hoping that it will be a place where everyone can post recipes to help us all come up with new ideas for quick, easy, yummy dinners for our families, and hopefully limit our take-out consumption!! (Although I do plan on take out twice a week or so...)

Here is the link-bookmark it and let me know what you think!

  I will continue to blog here, but thought my dinner conversations should have their own place, so I can continue blogging about my little O-frog and the rest of my family on here.

Thursday, October 23, 2008

Yesterday was two weeks since Owen passed. In so many ways, it seems impossible that two weeks has already passed since I last held my baby, but in others, it seems like a lifetime ago. What is most difficult is knowing that I am not able to hold him again, that I am not able to sit next to him and watch him breath, to sleep next to him and feel the warmth and perfect shape of his body next to me. Sleep is peaceless without him. My dreams have been unpleasant.  And yet, I don't wish to "get over" this. My son is gone. He always will be missing from my life. I am incredibly grateful for the time I had with him, but so wish I could be with him, as my life is incomplete without him with me.  How do I answer the question "How many kids do you have?" in the future? How do I sign cards? I cannot simply pretend he did not exist, that he is not still my child even though he is not physically present.  I cannot deny him, nor would I want to.
  Went to the zoo yesterday. I soo wished Owen had been with us. The Rainforest exhibit had not been open the last time he was able to go, and he would have loved it. Additionally, we were two of about 10 visitors there during the day, so we were able to spend quite a bit of time at the different exhibits, and were able to get right up next to the Apes, and ask questions to the zookeepers about the feeding times and procedures.  (There is one male, 4 females, and he does mate with each of them, but they are on a human form of birth control, so they do not conceive. They are fed 6 times a day, 4 of which are mixed veggies, twice with biscuits which are commercially made. The biscuits are enough to sustain them-they have all of the nutrients, calories, etc that they need, but the gorillas are fed additional items to make meal times more interesting. Who knew??)  
  Owen would have loved all of it.  He enjoyed animals, and learning things about them that he could impress other people with. For instance, Matt's mom and brother went to the Grand Canyon this spring, and his Mom brought back a stuffed condor for Owen and had Matt share the following information with him-#1-the average wingspan of a condor is about 9 feet (which we showed him on the floor) and #2-Condors urinate on their feet to keep cool.  The last bit of info was the one he was most excited to share with people.  He had a subscription to a magazine called "Zootles", which is a Zoobooks for younger kids and loved it!-It is phenomenal-I highly recommend it (and in fact, bought a subscription for my nephews for Christmas...shhhh!) They focused on one animal in each issue, and include letter recognition, numbers, stories, etc.
  Another thing Owen would have loved about the last two days was the snowfall.  Who doesn't love the first snowfall of the year? It is so peaceful and innocent. I am always amazed by it's beautiful silence.  I have a black peacoat on which individual snowflakes can be seen with amazing detail, and we would love to look at the differences in each one as they landed and stuck to my coat. There is such beauty in things we often take for granted. I tried to see that, and to help Owen see that.  Instead of cursing the snow, we would look for the amazing wonder of it-each individual crystal, and how many of those would it take to create that 7 feet of snow?  The splendid colors of the leaves, the first flower bud peeking out in the spring...I believe in miracles, I believe in magic. It happens unnoticed around us each and every day.

Tuesday, October 21, 2008

If anyone is able to make a gift basket to donate by Friday morning for a benefit for a local little girl who has cancer, it would be tremendously appreciated...Please let me know.
Not much new. I miss him...had to write a thank you for the local papers for the amazing support given by friends and family. It's hard to see his obituary in the paper. He looks so happy and healthy...

Friday, October 17, 2008

 Last night when I went to pick Anthony up from Frank's house, I was waiting for him inside and saw the Build a Bear that Frank had that had Owen's voice recorded on it. I was so excited and wanted to hear his voice-it has been awhile since I have heard that sweet voice. So I pressed the paw that said "Talk". Now, you would think that if one of the paws was going to record something, it would be red and say "Record", not something like "Talk", which is what I expected the bear to do. What I instead ended up doing was recording over sweet little voice.  I feel like such a complete jerk. There is no way I can do anything to repair that.  I feel horrible.  Obviously it was not done on purpose, but still-there is no way to re-record that.  Ugh. Another thing added to the list of stupid things Jen has done...

Thursday, October 16, 2008

I miss Owen. So many things about him.  I am also sad thinking about the life he will not be able to have now-things he won't be able to do...
  Thank you to everyone who was able to come see us at the visiting hours and at the memorial service and share your condolences with us.  It was good to see everyone, although obviously I wish we could have all seen each other during happier circumstances. 
  A few stories from those two days: First, it was incredibly awesome that the entire jv and varsity football teams and coaching staff showed up in uniform as a team. Seeing that in itself was emotional, then one of the players gave me a jersey and tiger armband with Owen's initials on it-all of the players were wearing one. The team dedicated this year's season to Owen. For those who do not know, Seth plays jv football-it was really such a nice symbol of support.
   One of Owen's friends came in with his parents and gave me a big hug. While I was holding him, he asked where Owen was, and I told him that Owen was in heaven, but that when he fell asleep that Owen would be able to come and play with him. Jake asked, "Can we race?" I said, "Absolutely you guys can race." and then Jake asked, "How fast can angels run?"  It was the absolute sweetest thing, and of course I completely lost it.  It was truly one of those "out of the mouths of babes" moments.
  Releasing the balloons after the service on Monday was nice-Owen would have loved it.
 So much to's really unbelievable to think that I will not be able to hold Owen again, or see him, touch him...all of those things I was so thankful for when he was still here with us. So many regrets I have about things I should have done with him that I will now never have the chance to do. I do have many happy memories to look back upon, I just wish he was here with me to remember them with.

Saturday, October 11, 2008

"My Wish" by Rascal Flatts lyrics

I hope that the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
If it's cold outside, show the world the warmth of your smile,

But more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.

But more than anything, yeah, and more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

This is my wish
I hope you know somebody loves you
May all your dreams stay big

Thursday, October 9, 2008

Here is a link to Owen's obituary on the funeral home site. I will post when I have a link to the obituary from the Buffalo News.

 Calling hours will be Sunday, October 12 from 1-9 PM at Child's Funeral Home, 10 Eckerson Ave in Akron 14001.
  A memorial service will be held at 10 AM on Monday, October 13 at the Calvary Baptist Church, 12752 Lewis Rd in Akron.
     For those unaware who may have concerns about bringing younger family members to the calling hours, we have had Owen creamated.  His urn, pictures and momentos will be with us at the calling hours and memorial service.

Wednesday, October 8, 2008

Owen passed early this morning. Sleep now. Be at peace. We love you. Arrangements will be posted when we have finalized them.

Tuesday, October 7, 2008

I may not be writing for awhile. I don't even know what to say right now. I am not feeling so positive today. I have no inspirational words. I am sad, I am angry, and none of this makes any sense. I have done everything I felt was best for Owen and everyone.
His body is so thin, his skin integrity is absolutely horrible, there is just so much of him that is deteriorating. I am hoping he feels no pain, but how do we truly know? His morphine was increased today. I hope that he is at peace and comfortable.
How do people get through this? People say how strong I am, but my god, I sure don't feel that I am. I don't even know what else I can do to help him be more comfortable...nothing, I suppose, which in itself makes me feel like a failure as a mother. I am supposed to be able to comfort my children, especially when they are not feeling well.
He is still here. I am still able to touch him. Again, what am I going to do when I can't anymore? How does a mother hand her child over to someone, knowing that she will never, ever see him again?

Sunday, October 5, 2008

Both yesterday and today, Anthony was taken to a skate park in Buffalo.  He is not super good on skates, but is getting better. About an hour and a half after my father left with him, I got a phone call that they were coming home....Hmmm, I asked why............

  Yup-Anthony broke his right arm-the ulna! It is currently splinted, and he will be going to an orthopedic doctor in the morning.  He is being so brave-he is not complaining at all!

  Owen is stable, no real changes in the last few days.  He seems more comfortable today than he did yesterday, which is obviously always a good thing.
  Keeping everyone close in our hearts to help us get through the rough patches...keep sending all of those positive thoughts our way.
"We got another one!"

Friday, October 3, 2008

Happy 5th birthday wishes go out to Christian today, and my thoughts are with his family, who has to find a way to celebrate this day-the first birthday without him there with them to celebrate with them...Happy birthday in heaven, little guy!
  Thank you to everyone who has left messages on the site-I really appreciate them. They are kind of like a big hug for me. Just knowing that so many people are thinking about Owen is very heartwarming.

  Again today, nothing new to report on Owen today.   He is resting comfortably, and I continue to take at least one picture and a minute or two of video of him every day-again, one of those things I wish I had done from day 1 (new mommies, and mommies to be-DO THIS! You will not regret it! Everyone else, it's not too late to start!)

  I am thankful that I am still able to sleep next to Owen every night.  To be able to wake up and reassure myself that he is still right next to me, and breathing, and I am able to touch him, hear him, etc.

  Go out and enjoy the crisp, autumn air! Fall is my absolute favorite time of year. I love the colors, the bite in the air, the way the grass looks covered in frost and crunches under my shoes. I love fresh apples and tart apple cider that makes my cheeks hurt, pumpkins, scarecrows, and hayrides, decorating and dressing up for Halloween, Charlie Brown and The Great Pumpkin, and the Great Pumpkin farm in Clarence. I love fall clothing, and secretly having my toenails painted funky colors, hidden underneath socks and boots...Last year, I was introduced to the tastebud pleasure of fresh pressed concord and especially white grape juice from somewhere out in or near Rochester that Matt's brother, Mike, brought out- I'm hoping to get some of that this year! YUM!

  We bought Owen a white and an orange pumpkin from a neighbor around our circle. I brought them in for him to touch and see the night we watched the new movie Scooby Doo and the Goblin King. Owen loved watching Scooby Doo, and even though he wasn't able to actually watch it, I'd like to think that he could hear it, and enjoyed it with us.
"We got another one!"

Thursday, October 2, 2008

 Hi, all.
   Again, nothing new to report. Owen seems comfortable, and there have been no changes that we have noticed since I last wrote.
  I received the digital scrapbook of Owen's Make a Wish trip from Creative Memories today! I like it, although, of course, looking through it there are things I would like to change about it. It is really nice, though.  I also got a book from Snapfish that I made of a variety of pictures from the past year, which is also nice-but is only pictures and captions-there is MUCH less that you are able to do with that.  Anthony will be taking it to school with him tomorrow.  
  I have to imagine that it is so hard for the teachers to know what to say to the kids in his class. It's hard for us to explain things and to know what to say. The school has been really remarkable in dealing with the boys and the extraordinary situation they are in. I can honestly say that I view them as an extension of our family.  While many people have fallen away because of not knowing what to say or how to deal with this, so many others have really come forth and shown how incredible people can be, and for all of them, I am so grateful.
  As I look out the window while I type, I see the sun shining on the trees, and the sky dark behind them.  I am constantly reminded that no matter how gloomy things are, that the sun will still shine. No matter how bad things may seem, you will get through them, and you will laugh again, and be happy, even though it seems impossible sometimes.  I hope to carry that lesson with me for the rest of my life, and that I can encourage others to see life from that point of view.

Wednesday, October 1, 2008

  There are signs that Owen is taking other steps toward the final stages. However, he opened his eyes for about two minutes last night, after being completely unresponsive for the past two days, again showing that he will refuse to follow protocol!  Things have not changed in that they may occur immently, or may not occur for a few days or a week or more.  Again, we are just reminded to take every second we have left with him and cherish it.
  We kept the boys home yesterday to give them the day with their brother. I don't want them to miss a ton of school now, but I do understand that it is important for them to spend time with him now. It's a hard balance-trying to allow them to keep their lives as normal as possible, and not focusing on what is going on here all of the time, and giving them the time that they need/want here with Owen while he is still here.  It is difficult for all of us to know exactly what the right choices are right now, but we are making the choices that we feel are the right ones for all of us.
 Owen is sleeping peacefully. He is not in any pain at all. He looks very comfortable, and we are making sure that he stays that way.
  Also-if you have not read Owen's diagnosis story and would like to, it was posted on Friday.  It gives the story of what led us to where we are today...
  Sending hugs and love to everyone--keep us all in your positive thoughts please, as I imagine the difficult will get much worse as things progress and during the aftermath...

Sunday, September 28, 2008

From PBTAngels:
September 28, 2008

Have you seen a gold ribbon? Do you know what it stands for? Have you heard that September is Childhood Cancer Awareness Month? 

I am the mother of a child living with brain cancer, a diffuse intrinsic pontine glioma. I finished breast cancer treatment on July 10th and flew from Michigan to West Virginia that day for the funeral of another child...a beautiful fourteen year old girl who lost her battle with the same rare brain cancer. 

Everywhere I look I see pink ribbons, I feel gratefulness...and I feel anguish. According to an article published in the New York Times on September 22, 2008, as a result of advances in treatment "...98 percent of women with early-stage [breast] cancers survive at least five years.." Why is this true? Because we have banded together to raise awareness and funding for our mothers, our sisters, our aunts, and our daughters. Our children who are living with-and dying from-cancer desperately need that same attention...and funding.

Helen Jonsen, senior editor and mother of a child who recently underwent treatment for osteosarcoma, stated in a September 12th article, "Cancer is the No. 1 disease killer of children in the U.S. ...We tend to talk about it in hushed tones instead of screaming for help. But scream we should." The article goes on to say, "The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year." 

September 13th was our nation's first Childhood Cancer Awareness Day. When I didn't see anything about it in the news-but I did hear about National Talk Like a Pirate Day a couple days later, I made some calls to our local news stations. For some reason I can't get the words of one of the story editors out of my mind. "So...what's your event?" Later."Pitch me a story." 

Let's see...ummmm...would the deaths of 2,300 children each year be newsworthy? What about the diagnosis of 46 children each and every school day? What about the fact that only 2/3 of children diagnosed with cancer will survive? We could move on to funding. Is it newsworthy that for every dollar spent on a patient with prostate cancer, less than 20 cents is spent on a child with cancer...or that a patient with breast cancer has triple the research resource allocated to her when compared to a child?

When I mentioned that Child Cancer Awareness Day--and month--are a national thing, I was told, 'We put local news first.' Okay...I can handle that. A local event...I have a list of them. 

The shock of a family receiving a breast cancer diagnosis on an October Monday afternoon, and taking their six-year-old to the Emergency Room on Thursday only to be told, "There is a large area of swelling in the brainstem; we suspect a mass." We could always throw in the comic relief of the words, "My mom has a mass!" coming out of the mouth on that happy little face. 

How about a mother leaving the Pediatric Intensive Care Unit late that night to go home because she knows she needs to get a good night's sleep before attending an Interdisciplinary Clinic early the next morning...where her own treatment plan will be recommended? 

How about a local pastor, husband, and father being given the specifics of his son's grim diagnosis and prognosis in one hospital while waiting for news of the specifics of his wife's diagnosis and prognosis from the Cancer Center at another hospital? 

How about an 11-year-old boy and an 8-year-old girl being abruptly pulled out of the routine world of reading, writing, arithmetic, language, history and science as taught to them by Mom at home...and being thrown into a class on brain anatomy and abnormalities (specifically their little brother's) taught appropriately and compassionately by an MSU med school professor...who also happens to be their brother's new oncologist? 

How about a six-year-old who finds himself no longer able to play the piano, the violin, or the cello because he has lost the strength on the left side of his body? 

How about a mother waking up in her child's hospital room one morning, showering, and walking downstairs for her lumpectomy...while her husband takes over the duties of hospital parent and waits anxiously in his son's room for news of his wife's surgery? 

Looking for a human interest story? Try the same mother moving back into the hospital early on a Sunday morning four days later so that her husband, a pastor, can be in church...only to watch in disbelief as her fun-loving, active six-year-old--determined not to have an accident--becomes too weak to sit up to go to the bathroom on a bedside commode. What about the willingness of that little boy to allow the nurses to help him even with the most private of things...because he knows his mother is recovering from surgery and he is concerned for her well-being? 

Not sensational enough? Let's fastforward to Saturday, November 24th, 2007...two days after Thanksgiving. A mother sits in a hospital room with her sleeping son. She ends a phone call because she hears an alarm she has never heard before, an alarm letting the nurses know that her son's oxygen level is dropping. Soon the room is full, and it is determined that the child is disoriented, then staring ahead...completely unresponsive. Somehow everyone moves with the child on that bed through the hallways to the Pediatric Intensive Care Unit where the intensivist begins the work of saving a precious life. Aside, the question parents never want to hear, though one that must be asked, "Given his prognosis-do you want us to resuscitate him, if necessary?" The father, who has just arrived, breaks down in the unbelievable stress of the moment. The mother realizes the urgency of the situation, pushes emotions aside, and asks, 'Do we know what is happening?' The answer is no. 'Then, yes, we want you to do everything you can for him.' She stands at the foot of the bed with one of her son's oncologists. Together, they watch the PICU team work...with a machine. The mother steps outside the room only when the child is intubated. The drama continues, as the entire department revolves around that one room...that one little boy.... The eyes of those outside the room...every nurse, every resident, every doctor...are looking in the same direction. The parents sign permissions as they are handed to them, and the work goes on. Everything seems to be happening in slow motion. Finally, the intensivist approaches. The child is critical, but stable...on life support.... 

I have just highlighted the first month of our new life in the pediatric cancer world. I am aware of five precious children who died this week--within five days--as a result of just one type of rare cancerous brain tumor, the same as my son's. Skyler...Adam...Mara... Brynne... and Lauren. They belonged to all of us. What will it take for people outside of the childhood cancer community to notice what is happening to our children? What will it take for everyone to understand the urgency of the situation? What will it take for the federal, state and local governments to finally engage in the fight? Will it be the cancer diagnosis of a celebrity's child or the child of a political leader? Will it be the death of a child belonging to someone in the media? Will it be your child? 

Please, join the effort to raise childhood cancer awareness. Show your support by wearing a gold ribbon, and by making the issue an important topic of conversation. Distribute copies of this letter in your place of employment, in your place of worship, and in your community. Contact government officials, and express your concern. 

A decade ago, we noticed a person wearing a pink ribbon on a t-shirt or lapel. It didn't take long for pink ribbons to raise breast cancer awareness in the public eye, and to mobilize our society to action. I hope that in 10 years gold ribbons will be as common as pink ribbons...and that the survival rates for pediatric cancers will be comparable to those for breast cancer. With your help, it will gold ribbon at a time. 

With Hope for Our Children, 

Sandy Smith 

Breast Cancer Survivor & Mother of a Child who is Battling Brain

Friday, September 26, 2008

Owen's diagnosis story...

Owen was diagnosed with medulloblastoma, a rare cancer of the brain and spine, when he just three years old. He had been vomiting for three days, and complaining of neck pain. Fearing meningitis, but hoping for something benign like a stomach virus, his father and I took him to the ER at Women and Children's Hospital on Saturday, April 14, 2007. We spent about 12 hours there, Owen going through a battery of tests, including bloodwork, a spinal tap, and finally a CT scan. Finding nothing on the initial viewing of the scan, we were sent home. We stopped at Walmart to buy him popsicles. When we got home, there were 4 messages on our answering machine, and the phone was was the doctor from the hospital, telling us to come back in, and to bring in a change of clothes.  

When we got the the hospital, there were two doctors waiting for us, a neurosurgeon and a neurologist. They asked us if we had noticed Owen appearing weaker, uncoordinated, slurring his words. They checked the way he was walking, his grip on both hands, his pupils. They told us that the reason that they were asking us those questions was because Owen had a tumor in his brain. It was in the back of his head, near the brain stem. We were told that the tumor was about the size of a grape. They actually considered taking him into surgery that night. Instead, Owen was operated on on Thursday, April 19. On Monday, they did a MRI of Owen's head and spine. They discovered that the tumor in his head was larger than they had initially thought-it was about the size of a walnut. They also discovered that Owen had tumors in his spine, placing him in a much higher risk category. They would not be able to operate to remove the tumors in his spine because it was inside of his spinal column, and to do so would sever nerves.

The night before Owen's surgery was the absolute worst night of my life. Obviously, brain surgery is extremely risky, very intense, they were working very close to his brain stem. I also knew that, regardless of the success of the surgery, the child who was walking in to that surgery would not be the child who walked out. We were warned that it was possible that he may talk after surgery, then lose the ability a few days later. We were told that because they were working so close to the brain stem, that it was possible that Owen may never wake up at all.  We were told that they may not be able to remove all of the tumor if it had infiltrated the brain stem.

Luckily, during surgery, they were able to completely remove the tumor in his brain. However, in doing so, they had to cut through his cerebellum, leaving his right side very weak, so he was unable to walk, crawl, sit up, or even have control over his right arm and hand. For about the first month after surgery, Owen would cry, ask for something, and when you brought it to him, he would cry and tell you he did not want it.

He endured 37 radiation treatments to his head and spine (which, I believe, is a record at Roswell for his age), leaving his tender skin burned and raw. He was sedated, intubated and his face was put in a cage formed to his head and face so that he could not move during radiation each and every time. He began chemotherapy after his surgery in April. The horror stories you hear about adults going through chemo pale in comparison to how you feel watching your young child react to it. When you hold his tiny little body as they are vomiting nothing but green bile because there is nothing left in his tummy reacting to the very poison that is supposed to help cure him. When his white blood cell is so low that even the tiniest infection could become dangerous. He spent over 140 days in the hospital since his diagnosis. Owen had several infections, one in which his fever was over 104 degrees, and his body was shaking, his face twitching because his electrolytes were so off. Owen stopped eating for months, and was put on a bag of fluid (total parental nutrition) which was a highly caloric "food" that went into his bloodstream through the broviac central line in his chest (which is sort of like a permanent IV line). Every single night he was on that, he vomited. This was in addition to the vomiting he did with the chemo ...This was all before his 4th birthday.

Owen eventually regained his strength in his right side. He was able to crawl, then stand, and eventually walk without support. And, eventually, he did laugh again. He became the Owen we all know and love again, even stronger. His sense of humor returned. Owen's personality came back. Unfortunately, even though he had a completely clear MRI in January, so did his cancer. We had been told that if it returned, there was no chance for a cure, especially at his age, and with the extensiveness of his disease. In April, after we received the news, we thought we had about 6 weeks left with him, tops. Luckily, here we are, almost 7 months later, and Owen is still with us. Currently, Owen is in Hospice Care and at the end stage of his illness. He is awake for a few seconds at a time. He has not eaten anything in almost a month, does not speak, most likley cannot see. I do not know how many days or hours I have left with him. Our lives have changed so much because of this diagnosis and everything that comes with that. Soon, I will not have my youngest son. So many wonderful, amazing children have already been lost to cancer. I know that there is research being done to help to find a better way to treat cancer, and to hopefully have a higher cure rate so that no other families have to know what it feels like to have to wake up each day knowing that you will not be able to watch your child grow up. I am thankful that many children and families endure this and survive, but I will spend the rest of my life wishing with all of my heart that Owen was a survivor of cancer, not on the list of angels it has claimed...

Enjoying the fact that he is still here, fearing the life I will have when he is not.

Thursday, September 25, 2008


I hope you never have to hear the words, "Your child has cancer."

I hope you never have to hear, "The prognosis is not good."

I hope you never have to prepare your child to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.

Look at you with fear in their eyes and say, "Don't worry Mommy, everything will be okay.'

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the "cure" you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

"It's going to be okay, Mommy."

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, "There is nothing more we can do."

I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see your child's head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, "It's going to be okay Mommy."

I hope you never have to face the few friends that have stuck beside you and hear them say, "Thank God that is over with,"...because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to "normal".

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words...

"The cancer has returned" or "The tumor is growing."

And your friends become even fewer.

I hope you never have to experience any of these things...Because...only then...

Will you understand...

(author unknown)

Tuesday, September 23, 2008

  I finally finished the digital scrapbook I was working on of Owen's Make a Wish trip in April.  It took me literally over 24 working hours to complete-I kept finding errors when I went to preview it, some pretty big ones, like wrong dates, etc! It's my first one, so I am hoping that once I have the finished product in hand I will be happy with all of my work!  The program I used is from Creative Memories, and is really amazing. I will need to play around a bit more and read the info online to learn more about the program. There is so much you can do with it. (Thanks, Deby!)
  We did get to see Owen's eyes a few short times during the day, and I held him tonight for awhile. He looks so incredibly peaceful once he is settled in my arms. I read two "Owen and Mzee" books to him. It is the true story of a baby hippo named Owen who was displaced by a tsunami, who became friends with a 130 year old tortise named Mzee at a wildlife sanctuary in Kenya. Very cool! Again, I think Owen enjoys listening to us, so although I do give him alot of downtime, I think it's soothing and important for me to continue to read and talk to him while I can when he seems semi-awake. Usually, he will fall back to sleep as I am reading or talking, but that is more than ok. It seems that it takes an incredible amount of strength for him to open his eyes for any length of time. I believe that he is listening, even when his eyes are closed.
  I am so, so, so thankful for every day we have with him. I would have never guessed that I would still be able to have him here with me now when we saw the scans in April, and certainly in July.  I realize how incredibly lucky we are. Again, he is the strongest person I know, and until the tumors tell him otherwise, he is staying right where he is-at home, with his family, where he is comfortable. He is right where he belongs-(especially when he is in my arms), and he does not want to go anywhere.
  I am so afraid of losing him. My heart stops sometimes when he is taking awhile in between breaths--I don't know what I will do when he doesn't ever take another one.
 But, for now, "We got another one!"

Sunday, September 21, 2008

  Not much new to report. He has not been vocal the past two days at all, not even to say "Ow".  He holds onto the Build a Bear that he made for me, and is covered by mommy kiss blanket. I want to still be able to smell him when he is gone, so I am hoping that I will be able to snuggle with them and bury my nose in them and smell Owen.  
  I am just so tired today. It's amazing how emotional stress can carry over into how your body feels. I shouldn't complain. I can't even imagine how Owen feels, and has felt with everything he has been through. Ugh. Its so hard not being able to do anything about it when your child is hurting.
  "We got another one"

Thursday, September 18, 2008

Owen opened his eyes tonight for a few seconds while his brother Anthony was standing over him, and I said "Owen, say hi to Anthony" not actually expecting a vocal response, but much to my complete shock, Owen said "Hi"! I was completely certain that I would never hear his voice again other than to say "Ow". It was really unbelievable. He was only awake for about a minute, and we could tell he was trying to say more, but encouraged him to rest. Of course, the video camera missed the word, but it will be forever in my head. It really made me so, so happy!!!
Sending the entire world a great big hug tonight! I feel completely renewed. I hope, so much, that I get to hear his voice saying happy things again-even if it is just one word! (and I hope that next time, the video camera captures it, so I can listen to it over and over...)
Oh-and thank you to everyone who has signed the petition!! Remember-we are still in Childhood Cancer Awareness Month!! Wear gold (or yellow--close enough unless it's a ring) to show support. Thank you all!

'We got another one!!"
If interested, please sign the petition to show interest to merchandisers in products that would display the Gold Ribbon on them. The Gold Ribbon stands for Childhood Cancer Awareness, as pink does for breast cancer. September is Childhood Cancer Awareness Month, yet I have not heard that mentioned anywhere. I am glad that Breast Cancer receives the attention it does, as it is such a horrible disease. I would like for Childhood Cancer to receive similar recognition.

According to,
  • Approximately 12,400 are diagnosed with cancer each year.
  • In 1998, about 2500 died of cancer.
  • About one in 300 boys and one in 333 girls will develop cancer before the age of 20.
Even for those 250,000 children who do survive their journey with cancer, there are risks from the very treatments that helped save them.

Some examples of late effects after cure from childhood cancer are:

  • Breast cancer at an early age in female Hodgkin's survivors who received radiation to their chest when children or adolescents. Their risk is about 15 to 20 times that of their peers who have not had Hodgkin's disease.
  • Heart disease after treatment with chemotherapy (anthracyclines) or high-dose chest radiation.
  • Learning disabilities in survivors treated with radiation and/or chemotherapy to the brain.
  • Second cancers related to chemotherapy drugs or radiation used to cure the first cancer. Survivor’s risk is over 6 times that of their peers who have not had childhood cancer.
  • Symptoms of posttraumatic stress syndrome in survivors and their parents.
Please, if you can, if you are interested, sign the petition. Children's Cancer does deserve awareness and support. Thanks.
Nothing really new to report today. Things have been pretty much the same for a bit now. He did spit up a little bit last night, but it was a tiny amount and a one time occurrence, so we don't feel it's anything to be overly concerned about it, and the nurse agrees.

Last night, I had a dream that Owen woke up and was talking and sitting up, and he said, "I love you, mommy"! I quick grabbed the video camera and asked him to repeat it, and he did. He was sitting on my lap and hugged me and kissed me...What an awesome dream!

I have been singing some of Owen's favorite songs to him-like the Clifford Puppy Days theme song, the Sesame Street theme, and of course, when I tell him what day today is, etc, I sing the "There are 7 Days in a Week" song. I also have a few Owen songs I made up when he was a baby, so I sing those, too. He definitely appears to be listening. Also, last night, I was sitting next to Owen on the couch, reading Maniac Magee to Anthony, and Owen was listening-eyes open. He also always opens his eyes when both of his brothers come home, Anthony after school, Seth after football practice later. He misses them when they are gone, for sure.

I want to thank everyone for the support they given me, Owen, and the family. I want to thank those of you in advance who will be my safety net through whatever the next few days, weeks, months, years will bring. Please remember that I will not only need you during the immediate aftermath, but for years to come. There will be holidays, birthdays, anniversaries, and all sorts of just "bad days" in between. I know that not every day will seem impossible, that I will laugh and smile (those of you who know me understand that laughter and humor is such a part of who I am!), but there will be those times that will seem like a heavy boulder of grief, from under which I cannot escape...

Enjoying the sun shining through my windows today.

Tuesday, September 16, 2008

Ah, sweetness! I held Owen for awhile tonight, and was able to peek right into his open eyes. He seemed to be much more awake today than he was yesterday. His eyes were open for a much longer period of time, and he was really paying attention to what I was telling him (and singing to him!) Being more awake, however, also means that he felt more pain today. He did say "ow" when we moved him, even the slightest bit, even after getting the bolus does of morphine. Wakefulness has it's bonuses and its downfalls for him.

I can't believe how incredibly thin he has gotten. I like to take pictures of everything. Tonight, I took a picture of his hips and tummy, which shows how thin he has become. I think that to accurately document the journey, I need to include the bad along with the good, or else I am not being honest. To be truthful, blogging about Owen's journey-as much as it is to keep people informed about Owen-is for me as well. It is a way for me to remember the things I would not otherwise. I have already stated that I wish I had begun this at the beginning of his journey (well, from his pregnancy, actually-which is true for all of the kids-oh the things you forget!!). I am glad that I will at least have what I have written to look back upon, and recall everything he and I have gone through. I wish I could leap inside of his body and feel what he is feeling so that I would best know what I could do to help him.
Sending hugs to everyone. Look for good today-you will find some wherever you look.

"We got another one!"
Owen was awake for a little bit again today. He said something that sounded like "whatever!" when he was awake, which is quite possible, as that used to be a common phrase of his.

He didn't eat or drink anything, but as he reaches the end, his body requires much less. In fact, having more hydration than his body requires would actually make his heart have to work harder, and would increase the intercranial pressure in his brain...He is on the maximum dose of steroids to reduce the swelling in his brain, but as the tumors continue to grow, there is only so much that can be done. I have to wonder if he has a constant bad headache, and yesterday while I was rubbing his head and neck, I noticed that he flinched every time I touched the back of his neck. I wonder if even the slight touch that I was using on him caused him acute pain. From the start of radiation, he has complained that his back hurts, and has continued to do so. I wonder if that still hurts him, or even more so now that he has more tumors in his spine and as they grow, they put more and more pressure on different nerves. I know his feet hurt, because when I try to do any range of motion on him, he flinches and says "ow". Even though he is on continuous morphine and we give him a bolus push before we move him, I wonder how much pain he is truly feeling all of the time. I know firsthand that you can become accustomed to and adjust to amazingly difficult circumstances, and can live with extraordinary amounts of pain (mine emotional-Owen's physical, and probably emotional, as well.) So it makes me wonder if he is feeling pain, but not expressing it because he has become accustomed to it, and, at this point, is having difficulty expressing what he is feeling at all. There is no way to know for sure what he is feeling. I'd like to think that when he is asleep he is resting comfortably and is not in any pain, and that all of his dreams are beautiful and amazing, but how do we know? How much of what we believe is to comfort ourselves, because knowing the truth is far too painful...

Monday, September 15, 2008

We saw Owen's eyes for a bit yesterday-he had a sip of water and about 3 small spoonfuls of yogurt. That is about what he did today, as well, although while asleep today, we could have picked up his arm and dropped it to the couch and not gotten a reaction from him. I am so pleased that he is still opening his eyes for a few seconds each day. I love lying next to him at night. I usually have my face close to his so I can feel his breath on my face, and have him as much in my arms as is possible. He used to sleep lying across me, but that is not comfortable for him anymore...

Somehow yesterday my "Owen" ring came off of my thumb and is nowhere to be found. I purchased it on Owen's Make a Wish trip when we were at Universal Studios-it was a silver band with Owen carved into it. I'd like to imagine that it will turn up somewhere, although I have searched all of the probable places and have not found it.

Hoping to see Owen's eyes tomorrow...

"We got another one!"

Sunday, September 14, 2008

I have said for the past week or so that Owen has only opened his eyes for a few seconds here and there. It doesn't seem possible, but he is awake even less now. Yesterday and today, I have only seen glimpses of his eyes peeking, today even less than yesterday thus far. He did say "ow" when I moved him to change his diaper, clean him up and change the pad under him this morning, even with the bolus push. I have to imagine that his body is pretty stiff even though we do move his limbs now and then throughout the day.
Sometimes, I just keep thinking that he will just wake up, get up and want to play and ask to hold his dvd's, ask for all sorts of food and go to grandpa's and the park, and do all of the things he used to love to do. I know what the reality is, but that doesn't stop hope. I have to imagine that heaven for him would be all of those things, as well as all of the music he loved, and being able to play with (and tickle) all of the characters he loved. He loved ALL of them! That was the absolute best part of any of the trips we took for him was seeing all of the characters. He loved to tickle people-anything to make people smile and laugh. He is such a sweet, funny kid. I miss all of that. Even though he is still physically here with us, we will never see that part of Owen again, which is incredibly sad. I wonder what he dreams about all day? I hope it is all of the things I mentioned. I have to believe that his dreams are happy and fun for him.

Saturday, September 13, 2008

When I moved Owen this morning and gave him his morning meds, etc, he opened his eyes and said "hi" then closed his eyes again. I was able to hold him for a few hours today, so there were two incredible gifts I received.
Owen was in a deeper sleep today. He rarely opened his eyes, and had nothing at all to drink or eat. I can't imagine the body being able to maintain for long without nourishment. I keep hoping he will wake up and at least take a spoonful...

Friday, September 12, 2008

I started to cry today while stroking Owen's face, realizing that I have likely heard him tell me he loves me for the last time earlier this week. He continues to get weaker, and awake even less. Today, I noticed that he didn't complain as much when I moved him which indicates to me not that he is more comfortable, but that he is getting closer and closer to the stage where he does not wake up at all. I suppose he is more comfortable as well-which is obviously a very good thing.
Yesterday, Owen opened his eyes while I was talking to him and said "orange juice"! I obviously ran to get him some, and he did have the cup in his mouth for quite awhile, and swallowed a bit. I thought while he was awake that I would offer him some yogurt, as well. He did take two very small spoonfuls before he shut his eyes and went back to sleep. Ah, the small little triumphs that mean so much!
He has not been awake more than a few seconds today. I guess I should say he has not opened his eyes for more than a few seconds. I believe that he may be awake and listening more than he appears, but does not have the strength to open his eyes for long.

My dad is taking Anthony and Seth to see Cirque du Soleil tonight. Anthony has no idea that they are going-he is going to be so excited!! The tickets are 4th row in section 12, so it sounds like they will have awesome seats! I wish that I could go with them. It has been so difficult to give the two of them the amount of attention that they should be getting. They both do understand the situation, but it is so important to remember my other two children, both of Owen's brothers, as well. Even though they are not ill, they are obviously just as important to me as Owen is. I do try to spend time with each of them everyday, and let them know often that they are not forgotten. I will never be able to make up for the year and a half that I have lost with both of them. I really hope to be able to spend much more quality time with both of them in the future, and that people remember them and what they are feeling now, and the loss that they will experience.

An extended illness of a loved one is very trying. You begin to grieve all of the changes you see, then come to accept them. You grieve the child he once was, and what you know the future will bring, but you are also so thankful that you have been granted the time with the knowledge that the future with that person is limited, allowing you to do things you may not have done (for example Sesame Place, Strong Museum, Disney) and say things you may not have said. The knowledge that you will lose the person you love causes you to throw away those little things that used to bother you and cherish them along with every other moment you have left. I know people have said that they do not know how I do this. I am not any stronger than anyone else, I was simply handed this "card", if you will, so I am forced to adapt, as anyone else would given the same situation. I can't imagine losing a loved one suddenly, without being given the opportunity to create memories we would not have had, take a million pictures I may not have, without being given the opportunity to say goodbye. I can't imagine getting through that. Can't imagine being able to get through a miscarriage, or SIDS, or an accident...I can't imagine life without Owen, but I am thankful that I have had the chance to spend this time with him. To be able to care for him as I have. I can't imagine not having had that opportunity.

Thursday, September 11, 2008

The doctor increased the amount of times Owen can receive the bolus of morphine. It's not thatPennies he needs it often throughout the day, but the way it was prior to the change, he could only get the bolus push twice an hour. Now, he is able to receive it every 15 minutes. Again, he does not need it that frequently, but he is in pain when we move him to change his clothes or diaper or position. We do give him the push before we move him, but now being able to give him another one afterwards is much more comforting for me because I know that that will make him more comfortable!

He did not eat at all today, and only one small spoonful of yogurt yesterday. He did take a few small sips of water. He is markedly weaker, and is opening his eyes less frequently, and for shorter periods of time. His extremities have been cold, so he is under 3 blankets-his "mommy kiss blanket", which is the blanket exactly like the one I had when I was a child and bought one for each of the three boys. When I left the hospital to go to work in the morning, I would cover the blanket in "mommy kisses" so that when he missed me during the day, he would always have a kiss from me, and he could be wrapped in my kisses, as well. His brother, Anthony, gave him one of his blankets (Blue Silky-it was a blanket Seth had laid on when he was a baby, and Anthony took it over when he was born). Since he has been so cold, I also added a fleece blanket that was made for Owen by Matt's niece, Heather, last summer, thus earning the name "Heather blanket". So many people have given him a blanket for a gift, so I imagine he will be using all of them from here on out since his circulation is starting to decrease. One of Frank's friends just made him a Power Rangers blanket, which will keep him very warm.

Tonight, while watching television for a short bit, I saw a commercial for tires that had the song on that Owen and I used to sing to each other..."Never gonna let you go, I'm gonna hold you in my arms forever..." I imagine there will be things quite literally every day that will remind me of him when he is no longer able physically here.

The day of Owen's surgery, I went upstairs to his room on the 9th floor to move all of our things to the PICU where we would be staying after the surgery. While I was up there, one of the nurses came up to me and handed me a penny. She said, "When we moved Owen's bed to clean in the room, we found this under his bed, heads up. We thought you should have it." I thought that was awesome of her to do. I took the penny, put it in my pocket, and didn't give it any thought until a few days later. There is an organization at Women and Children's Hospital called Stone's Buddies. They ensure that children and parents have people to talk with, and plan events where families are able to meet and form friendships. The group was named after a little boy named Stone, who was 4 when he passed away from a brain tumor. I received information about Stone's Buddies, and while reading it, my jaw dropped. One of the things Stone always had in his hand was pennies-he collected them. This is the story from the Stone's Buddies site:

According to Stone’s mom, Stone is forever sending tiny reminders that he is watching over her by dropping pennies from Heaven where she can find them.

From the earliest days of his diagnosis with a brain tumor, Stone’s tiny hand was often seen wrapped tightly around a fistful of pennies. He loved coins and collected them faithfully every day, depositing each coin in his piggy bank for the rainy day he somehow knew would come in the future.

When Stone left this Earth at the age of four, Stone’s mom
believes that – somehow – he took his special treasure with him. Every time she finds a precious penny, she knows it’s a priceless reminder of the love she shared with

Stone and his assurance that she will never be alone.

I got chills after reading that, and that one small penny the nurse gave me took on a whole new meaning. I spoke with Stone's mom, because I wanted to share that story with her. She told me that when she finds a penny heads up, she feels it is Stone saying "I love you." When she finds one tails up, it means "I am thinking about you." I never leave a penny on the ground now. Even the littlest things can have their meanings changed so significantly during a journey like this. Everything becomes so beautiful. Even a cold, rainy day (even the 11th one in a row!) can be captivating. There is purpose, there is beauty in every single day, even the dark and dreary ones that we think will never end. Think of all of the horrible things that would happen if there was no rain...there would be no puddles to splash in, the flowers and trees and plants would not grow, oceans would evaporate, there would be no rainbows...A life without rain would mean we would lose our appreciation for the days filled with sun.

Tuesday, September 9, 2008

Because moving Owen has been causing him so much pain, the doctor increased the amount of medication he receives in the bolus push of morphine. Prior to moving him to change his pull up and fluff up his pillow, etc this morning, I gave him the push of medication, and when I picked him up to move him he didn't flinch. I took that opportunity to keep him in my arms and hold him for over an hour today. He feels so wonderful-just perfect in my arms. I can't even describe how amazing that was. I have the knowledge in the back of my mind each and every time that I hold him that it could be the last time I do so, so every time is so, so special.

Monday, September 8, 2008

Since I have sent the link to my blog out to some new people, I thought I would recap some things so that they do not need to read all of my previous posts.
Owen's scans in April showed that his cancer had returned, and that there were over 20 tumors scattered throughout his brain, and two small ones in his spine. At that time, we were told that any treatments would be palliative-that there was nothing that could be done to cure him at that point. The doctors also called Make a Wish to move the trip we had planned to take in July to the week after we got the results. He was put on a mild chemo that was hoped to slow the growth of his tumors and give us some more time with him, but there was nothing promised. We were told that, with his degree of relapse, that things could progress pretty quickly.
Surprising us all, Owen was still doing very well when he had a follow-up scan in July. He was still walking (almost, I dare say, better than he had since losing his ability to walk post-surgery). We didn't notice any difference in his memory or higher level processing, or his ability to laugh. The night of the scan in July, Owen was at his father's house. Frank went out to light the grill, and when he came back in, Owen was unresponsive on the couch. He called Matthew, me, and the nurse to come to his house. Owen was indeed unresponsive, and he was having some seizures. At that time, it appeared to all of us, including the professionals, that our time with Owen was very limited.
The oncologist increased Owen's steroid to reduce the swelling in his brain. His father and I decided to stop the chemo, and it was at that time Owen was placed in Hospice Care. It is such a blessing to have him at home with me-I cannot imagine how incredibly difficult life would be for all of us if we had had to have Owen cared for at the hospital from that point on!
With the increase in the steroids, Owen bounced back to his usual old self-a little more tired than he had been, but still able to walk and laugh and play. We are at the point now, though, where Owen sleeps most of the day. If he is awake, it is for a few seconds at a time. He does not talk much, and has not been eating or drinking much at all now. He is on a morphine pump continuously, which keeps him comfortable, so he is not in any pain, except when we move him.
People talk of miracles, and I firmly believe that we have had, and continue to have our miracle with Owen right now. He has far surpassed any predictions or expectations that we have heard, and continues to amaze me with his strength and spirit.