Sunday, August 31, 2008

Owen was awake for about 20 minutes this morning, and said "hi" and "I wud you"! It was so awesome to hear his voice, and I always love seeing his blue eyes-which is why I included that picture of his beautiful baby blues in my previous post.
I am so thankful for that little gift I received today. It renewed me for sure!

Friday, August 29, 2008

Owen has been sleeping for all but a few minutes the past few days. His heart rate and respirations were pretty low when the nurse was here today-which is another sign that he is taking some steps toward the standard neurological, brain tumor signs. Again, this doesn't mean that anything is imminent, just that there are some more signs. Also, it is still possible that, even though he is showing the neurological signs, that he could still be taken by the tumors in his cervical spine, which would be sudden.
We gave him a sponge bath today, and changed his clothes for him. He stirred a little bit. He did eat about a half of a yogurt (his favorite cotton candy flavored!!).
Even though he is not awake, we are telling him how much we all love him. He does stir when we talk to him sometimes, so I know he hears us, even if he is not always able to respond.
Will keep you all posted...

Thursday, August 28, 2008

I wish I would have started this blog when Owen was diagnosed, or even from his birth. My mind is like a sieve, I can't believe the amount of things I have forgotten already about Owen's chemo and radiation, etc. Anthony asked me the other day if I remember the Owen before he was diagnosed, and I have to say that, while I remember snippets, the majority of the Owen I remember is the Owen from the last year and a half. I asked him the same, and he agreed. I suppose that is true with all 3 of my boys-I should have journaled, scrapbooked with journaling as well, for all three of them.
I read the following by Erma Bombeck. I think it captures how we tend to take our time with our children, significant others, friends and family for granted. The difference between Erma and us is that we still have the option to change the way we live our lives so that there is less regret when we look back upon it.


By: Erma Bombeck

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained and the sofa faded.

I would have eaten the popcorn in the "good" living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed. I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have sat on the lawn with my children and not worried about grass stains.

I would have cried and laughed less while watching TV - and more while watching life.

I would have shared more of the responsibility carried by my husband.

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

I would never have bought anything just because it was practical, wouldn't show soil or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."

There would have been more "I love yous"...more "I'm sorrys"...

But mostly, given another shot at life, I would seize every minute...look at it and really see it...and never give it back.

In memory of Erma Bombeck who lost her fight with cancer

I want to stop sweating the small stuff. Stop worrying about who doesn't like me, who has more, or who's doing what I am not able to do. Instead, I want to cherish the relationships we do have with those who do love us. To think about what we HAVE been blessed with, and what I am doing each day to improve myself mentally, physically, emotionally.

Wednesday, August 27, 2008

Yesterday at football practice, Seth's bike got stolen. He has been riding to and from practice for almost two weeks now so that we didn't have to leave Owen to drive him to or from practice. We did report it stolen to the local police, but without the serial number, they cannot do anything for him, because even if they find a bike that matches the description, there is no way to prove that that particular bike is his.
Two days ago, we took Owen to the drive thru at McDonalds. He asked to go, and having a change of scenery is a good thing. I sat next to him in the back seat. He did get uncomfortable-he feels quite a bit of pain when he is moved. He has been eating pretty well the past few days though. Today he ate almost a whole piece of Oscar Mayer bologna, a few bites of a slice of cheese, a bite of a cheese doodle, some double stuff filling from the middle of an oreo, an entire cotton candy yogurt, and drank almost a whole thing of Capri Sun!! Plus, he has had some milk, water, and orange juice. I am so, so glad that he is keeping himself hydrated and getting at least some calories in him.
I keep hearing people say that they've gotten news that Owen "is in his last few days" and that "things have taken a turn for the worse". Let's be real here-of course Owen is terminal. He is considered end stage. He is in Hospice Care at home with us. He has probably over 30 tumors in his brain, several in his spine, and has tumors growing in the cervical area of his spine which is near the brain stem. Again, things could happen immediately if the growth in the tumors in the cervical spine area press against the brain stem-that would cause him to stop breathing, and we would have no notice. If it is the tumors in his brain that take him, it will be the pressure from the tumors causing swelling in the brain that presses against the brain stem, which will cause him to stop breathing. If things happen that way, we will see him sleep more, then fall asleep and not wake up, watch his breathing slow, then stop. This could occur quickly (we have already seen some of these steps), or may not occur for a month or longer. Owen is not "hanging on" for any reason-he is a strong little boy who wants to live. Also, no matter who tells him that it's ok to go, his body will not let him go until it cannot function any longer. If I were to tell myself that it was ok for me to go, my body would not let me go because my body is not ready to go yet. Besides-what is wrong with Owen holding on? He wakes up and tells us he loves us. He holds our hands, kisses us, talks about going to preschool, about his brothers and grandparents, and all of the things he has done in his life-the characters he has met, the animals he has seen, the trips he has gotten to go on...His pain is pretty much under control-I would not say that his life is not worth living for him at all right now. I hope that people will check with us before telling people that Owen is in "his final days". That may be true, but it may not, and it is not honest to tell anyone that right now as if it is fact. Owen has surprised us all with his strength and his love for life. Again, until his body makes him leave, I don't think he has any desire to leave us whatsoever...
I love you all. Please keep Owen in your thoughts and think positive, happy thoughts about him. Please spread positive things about him. He deserves that.

Monday, August 25, 2008

As I have written, Owen is on a continuous med pump know which is so wonderful-his pain is finally controlled and he is comfortable. He has been hallucinating a bit, which most of the time is kind of cute and funny--like for instance, he looked up toward the ceiling one night and said "Hi, Big Bird! Mommy! Do you see Big Bird? Did he come to visit me?" To which , i answered, "Of course!" He sees Care Bears, etc...One afternoon, though, he said "I want my mommy" and I was sitting right next to him, holding his hand, so I said, "I'm right here, Owen. Mommy's right here with you" and he started to cry and said "No! Not you! I want my mommy!" Broke my heart that he could believe, even in a confused state, that I was not with him. I was thinking-my god, what if this is how he is at the end, and he dies thinking I was not with him? Horrendous! This morning, he was interacting with Spiderman, and the evil Venom (but in Owen's hallucination, Venom was a good guy and his friend.) I actually took on a male voice to help him with his fantasy-I was Venom as I helped to feed him a little bit of a freezie pop!
He has been sleeping quite a bit, which is good for him. He has gotten soo thin, and we have to make sure we keep changing his position so that his skin does not break down-it already did in one spot on his butt from where the pull up was rubbing when he was in one position. :( This is the hardest thing I have even done, but let me tell you-I would do it forever if it meant still having him here with me...What I am doing now is heaven because I can still hold and kiss and smell my little man. I don't know how my life could go on without him. It will be incomplete for the rest of my life...

Friday, August 22, 2008

Owen is much more comfortable (i.e. asleep) today now that he is on the medication pump. It gives him morphine continuously over the 24 hour period. He was quite uncomfortable yesterday, so it is so much better to see him like this.
While he has been semi-awake the past few days he will call out "Boo!" to scare us, and making animal sounds. He has also been counting and saying the alphabet! It's been quite cute.
Another thing he does while sleeping is snore like an old man!
Trying our best to keep him as comfortable as possible. That's the most important thing to me right now-that he is comfortable and not in any pain at all...
He got a postcard from the teacher who would have been his preschool teacher this fall. It's heartbreaking to me that he won't be able to go. He would have had so much fun and made so many friends...

Wednesday, August 20, 2008

We did let the butterflies go today. Once again, it took longer than we expected for them to find the exit and fly away, but how cool once they did! I was in the yard later in the day, and one had come back and landed in the grass!
The med pump should be coming out tomorrow, so hopefully that will make Owen more comfortable. It will continuously give him pain medication around the clock. We will also be able to give him a boost of medication if he needs it.
It's so nice to still be able to hold him. He is perfect in my arms. It's right where he belongs...

Tuesday, August 19, 2008

4 of the 5 caterpillars have turned into butterflies! One of them got into the hanging upside down stage, but never made a chrysalis. We will probably let them go tomorrow.
Owen has been sleeping quite a bit. Tomorrow the nurse is coming out to talk with us about having him on a med pump which will continuously give him morphine 24 hours a day, which will hopefully keep him more comfortable. If needed, we will also be able to give him a boost of medication. I believe he will continue to remain on the medicated patch, as well.
Recently, he has taken to holding onto boxes of Scooby Doo macaroni and cheese like he used to do with his DVD's. It's cute. He also often asks for his stuffed Rosita, a Sesame Street character which we were luckily able to order him online from Sesame Place. (BTW, if I haven't said this previously, if you have children who are of the baby to preschool age, I HIGHLY recommend Sesame Place! It was incredibly fun!)
Enjoy the last few weeks of summer!

Sunday, August 10, 2008

We are waiting for one final caterpillar to make his chrysalis before we move them to their pop-up Bugville home, where they will make their magical transformation into painted lady butterflies. I wish we could make one last trip out to Strong Museum to see the butterflies there-they have over 800 different types of butterflies and moths in a butterfly garden there. It's soo cool. It is an additional $3 per person, but soo worth it. We have a membership there because of the handprint that is on the wall there (Owen's). We did go out to see that-it's pretty cool that his hand will be on the wall there forever.
Owen's grandmother is up from Florida to spend some time with him, as well as offer support. It is nice that she is able to come and spend time here for awhile.
Anthony went to the fair yesterday with my parents and brother and his family. They had fun. In true Anthony form, he came home with a bunch of magic tricks. We are looking at the next Chris Angel with that kid! And Seth! He sent me a picture text of a HUGE blister on his finger that he got "at paintball". Of course, I found out the real story later--they were using a lighter to set the spray from a Lysol bottle on fire. Yeah-real smart! And this is the kid who will be able to start driving at the end of November...
Man, have we gotten alot of rain lately! I'm beginning to feel like we have been transported to Seattle, without the view!
Hoping for some sunshine soon!

Thursday, August 7, 2008

I wish you enough.....

Tonight, during the thunderstorm with the sky still flashing and thunder still rumbling, two brilliant rainbows decorated the sky...a reminder that no matter how turbulant it may seem, there is still beauty around you if you know where to look.
I don't know who to give credit for this story I am sharing to. I received it as a forwarded email from my friend Pam, but I do not know who originally wrote it. I found it worth sharing. I hope you all think so, too...
Recently I overheard a mother and daughter in their last moments together at the airport. They had announced the departure.

Standing near the security gate, they hugged and the mother said, 'I love you and I wish you enough'.

The daughter replied, 'Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom'.

They kissed and the daughter left. The mother walked over to the window where I was seated. Standing there I could see she wanted and needed to cry. I tried not to intrude on her privacy but she welcomed me in by asking , 'Did you ever say good-bye to someone knowing it would be forever?'.

Yes, I have,' I replied. 'Forgive me for asking,
but why is this a forever good-bye?'.

'I am old and she lives so far away. I have challenges ahead and the reality is - the next trip back will be for my funeral,' she said.

'When you were saying good-bye, I heard you say , 'I wish you enough'. May I ask what that means?'.

She began to smile. 'That's a wish that has been handed down from other generations. My parents used to say it to everyone'. She paused a moment and looked up as if trying to remember it in detail and she smiled even more. 'When we said , 'I wish you enough', we were wanting the other person to have a life filled with just enough good things to sustain them'. Then turning toward me, she shared the following as if she were reciting it from memory.

I wish you enough
sun to keep your attitude bright no matter how gray the day may appear.

I wish you enough
rain to appreciate the sun even more.

I wish you enough
happiness to

keep your spirit alive and everlasting.

I wish you enough
pain so that even the smallest of joys in life may appear bigger.

I wish you enough
gain to satisfy your wanting.

I wish you enough
loss to appreciate all that you possess.

I wish you enough
hellos to get you through the final good-bye.

She then began to cry and walked away.

They say it takes a minute to find a special person, an hour to appreciate them, a day to love them but then an entire life to forget them.
The scan in July showed growth of the tumors in the brain that were there in April, as well as new tumors, growth of the tumors in the spine as well as new tumors. The main new growth in the spine was in the cervical area of the spine. All of this is information we had and discussed with doctors, nurses, etc. If the end of Owen's life is caused by the tumors in his brain, there is a typical pattern we would see-a decline in his physical abilities (which we have already seen) and then he would get sleepy, falling into a coma-type state, and then eventually stop breathing once the growth or pressure from the tumors in the brain pressed enough on the brain stem. What is new information to us is that if the end is caused by the tumors in his cervical spine, he would simply stop breathing with no warning signs whatsoever. This news does not change the time frame of things at all, but it is a different and new possibility for how things may occur at the end. Things could occur within the next 5 minutes or not for a couple of months-the professionals don't know for sure and we can't predict it, and we don't know which way things will happen. Again, this makes us realize that we truly have to live each second like it may be the last with him, and get in all of the hugs, kisses, giggles, and "I love you"'s that we can in whatever time we do have left with him. This is true of everyone, though. We never do know how much time any of us have left with the ones we love. It is so important to remember that every day. Time with all of our loved ones are precious and should never be taken for granted.
I am sorry to everyone I have not been able to keep in contact with-you are no less important to me than you once were. Please know that you are always in my heart, even though I am not always able to find a way to let you know that.

Tuesday, August 5, 2008

Yesterday morning, Owen started complaining of pain again. The homecare nurse came out for a visit and couldn't figure out why he would be asking for meds so much since the patch was supposed to help take care of that and decrease his need for morphine. While she was here and I was sitting on the couch with Owen on my lap, I noticed a small sticker which looked mysteriously exactly like the med patch I had put on his arm....Yup-sure enough, while on the floor the previous day, that little stinker had taken the patch off and stuck it on the coffee table!! We put a new patch on him (on his far less reachable back!) and will be playing catch up with the meds until this new one kicks in!
He is sleeping now. Hopefully the meds will start to regulate, keeping his pain at bay, but still allowing him to stay awake!
Have a great day!

Sunday, August 3, 2008

Owen started a new medication patch which gives him pain medication around the clock. Since the med has caught up with him, he has been a bit sleepy today, but that should all even out once his system gets used to it.
He has eaten about a pound of strawberries in the past day!! It is good that he has found something good to eat, and isn't focused on eating something such as chocolate bars!!
The good thing about him being sleepy is that he is extra cuddly! I love holding him, so that is awesome.
Hope everyone enjoys this last month of summer!

Friday, August 1, 2008

Happy 10th Birthday, Anthony!!

Hard to believe, but Anthony turns 10 today! I was actually in labor at this time 10 years ago...What a little cutie pie he was/is! Gosh, he enters 5th grade this year. Crazy how fast time goes!
Owen has been medicated a little more often the past few days, which has made him a bit more sleepy. Again, though, he still tells people he loves them and tries to tickle them in between come grumpy moments and telling everyone to get him food! Gotta love those steroids!
I ordered replacement caterpillars for Bugville. When I called them, they said that they would not be receiving a shipment for at least a week, then wouldn't ship them for another week or so after that. I explained the situation, and asked if there was a way I could get them earlier, and was given the direct number for their supplier who said they would ship them out today!! So we should have them early next week!! :)
I will try to post little updates when I can. Big hugs and strawberry with sugar kisses to everyone!