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, Forbes.com 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 purpose...like 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 happen...one gold ribbon at a time. 

With Hope for Our Children, 

Sandy Smith 

Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancerwww.caringbridge.org/visit/aws

www.JustOneMoreDay.org

JustOneMoreDay@cfl.rr.com

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 ringing...it 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.

I HOPE...

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)

  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!"

  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"

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 http://www.candlelighters.org/factsheets.stm,

• 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.


http://www.thepetitionsite.com/1/gold-ribbon-support-for-childrens-cancer-on-consumer-products

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.

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...

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!"

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.

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...

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.

The doctor increased the amount of times Owen can receive the bolus of morphine. It's not that 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.

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.

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.

I was talking on the phone while sitting next to Owen this morning, asleep. I told the person I was on the phone with "I love you" to which Owen answered me "I love you"! God, I wish I had the video recorder going all of the time, and I could have captured that moment, that voice...It was such a gift for me to have him tell me that!

I recorded the Stand up 2 Cancer event that was on Friday and watched it two nights ago. The 11 year old child on the show who was shown and is the spokesperson for Brain Cancer has medulloblastoma-the same cancer that Owen has. There was also a child depicted, as well, when different celebrities were talking about real-life stories from people who have lost their lives from cancer. The celebrity discussing that child ended with "My son was 4 1/2. All he wanted to be was 5." That was the only point during the show that I cried, because holy cow, it completely captured exactly what is happening right now, and how Owen, and all 4 1/2 year olds, feel about life. I will from here on out stop complaining about birthdays and getting older. So many never even have the chance...

For the past few days, Owen has been more tired, not speaking much at all. Yesterday, he ate only two tiny spoonfuls of yogurt, and didn't have anything to drink. We continue to offer him things to eat and drink, even if he is unable to answer us. He does open his eyes here and there, although we are not entirely sure how much he is able to see clearly. I am no longer able to hold him on my lap-it is just far too painful for him to be moved that much. Obviously, keeping him comfortable and pain free is most important, so I make that sacrifice, knowing that likely, I will not be able to hold him that way again.
There is no standard measurement for the amount of pain one feels with the knowledge that she will lose her child. No Richter scale to give a comparative number to people who have never watched their child slowly decline. This particular time is most difficult to date. It is wonderful in numerous ways because Owen is still here. Although I am not able to hold him in my lap, I am still able to touch him, kiss him, listen to him breathe. Yet, I know that time is so limited now. I see him getting more and more tired, less able to fight. Of course I would continue to care for Owen for the rest of my life, even with the circumstances being what they are. What is most troubling for me is the knowledge that I will not be able to do that soon. Someday, far too soon, I will not be able to do those things with him that I cherish so much.

Owen used to love singing along with the song by Kenny Loggins "Return to Pooh Corner". He loved watching the following video on you tube, calling it the "original Winne the Pooh". I still play it for him now, and his eyes open when he hears the familiar song. Although he is not able to focus on the screen, at least he is able to listen.
http://www.youtube.com/watch?v=O5qMGXq_nhU

Owen opened his eyes today, ate a tiny bit of yogurt and had some sips of water. I brought out the video camera today and yesterday to capture his awake time, something I should have been doing all along. He is still comfortable. The medication he is on has been working wonderfully for that. He knows that we are with him, he will reach to hold my hand at night and when sitting next to him during the day. He also asks to be held some, which is my favorite time of the day!
I have been reading him his two favorite books every day-White Rabbit's Color Book and Goodnight Moon. If he is asleep when I begin, he always opens his eyes, or I notice that his breathing changes so I know that he is listening, and glad to hear the familiar words. I also play songs from "Little Shop of Horrors" that he used to sing, and the song "Back to Pooh Corner" by Kenny Loggins. He loves Christopher Robin and Pooh. When in Disney, Winnie the Pooh gave Owen some honey to eat. He was pretty excited, and the character assistant told Owen that Pooh doesn't share his honey with anyone, so he is pretty lucky!
I am so thankful that he is still with us. Everyday, I am grateful that we have been lucky enough to have him for another day. I don't know how many we have left, but we so value the ones that we are fortunate enough to receive.
I love you all and am sending you a big cyber-hug. This journey is difficult on all of us. I am so appreciative of the support we have received, but I realize that I am not the only one hurting. May you all find some comfort in happy memories and find beauty in every day.

Seth is sad that he has to go back to school, because he will be missing out on moments like these...

I got to hold Owen for awhile today. He felt like heaven in my arms. Got to see his blue eyes and kiss his soft lips. He was not awake for long today, but he did eat about 1/2 of a yogurt. We are giving him extra saline flushes when we give him his meds to help a little bit to keep him hydrated. Once the body begins to slow down, it requires far less calories and fluid, so putting Owen on an IV for hydration would actually create more problems-his heart would have to work harder, and his lungs, and he would retain fluid, etc. But giving him a few extra flushes a day only amounts to an extra ounce or two of fluid, so that little bit helps to keep him hydrated a bit more since he is not drinking much during the day.
The kids start school on Wednesday. It would have been when Owen had his first day of Preschool. He would have ridden a school bus for the first time, had his little backpack all ready, waiting with his brand new sneakers...I think about the little boy or girl who got to have his spot in the class he would have been in. Think about those kids who will be starting pre-k that day, who would have been in his class, would have been his friends.
All 4 of the major networks are airing a special this Friday called "Stand Up To Cancer". On the following website www.standup2cancer.org for a $1 donation you can launch a star for someone that you love, or add to a star that has already been created. I created one for Owen, my sweet little angel. You can view it by going to the site. Amazing that cancer research has come so far, yet so many are still dying from it, and it's treatments leave the body in a weakened condition for those who do survive. I hope that someday there is a scan that will catch cancer at its very earliest stages, promoting the chance for a cure. I hope that the treatments will be much less caustic and damaging to the body. I hope that the survival rate increases, so that parents do not have to watch their child go through treatments, do not lose their children. I hope that children will not have to suffer through surgeries, chemotherapies, radiation, infections, blood transfusions, bone marrow extraction (where they put a huge needle into each hip bone and draw out fresh bone marrow to possibly use in the future if a bone marrow transplant is needed. Oh, and before they do that, they need to do the same thing to check to see if the bone marrow is even ok to use, so the child needs to go through it twice).
Here's hoping that I get to see Owen open his beautiful eyes and hear him tell me that he loves me again. Every second I have with him is a gift. Every single second...