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
Thursday, December 25, 2008
Tuesday, December 23, 2008
Saturday, December 20, 2008
Thursday, December 4, 2008
Friday, November 28, 2008
Thursday, November 27, 2008
Saturday, November 15, 2008
Thursday, November 13, 2008
Wednesday, November 12, 2008
Saturday, November 8, 2008
Friday, November 7, 2008
Monday, November 3, 2008
Saturday, November 1, 2008
Wednesday, October 29, 2008
Sunday, October 26, 2008
Saturday, October 25, 2008
Thursday, October 23, 2008
Tuesday, October 21, 2008
Friday, October 17, 2008
Thursday, October 16, 2008
Saturday, October 11, 2008
Thursday, October 9, 2008
Wednesday, October 8, 2008
Tuesday, October 7, 2008
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
Friday, October 3, 2008
Thursday, October 2, 2008
Wednesday, October 1, 2008
Sunday, September 28, 2008
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.
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."
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...
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..
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-
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.
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,
Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancerwww.caringbridge.
Friday, September 26, 2008
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,
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...
Tuesday, September 23, 2008
Sunday, September 21, 2008
Thursday, September 18, 2008
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!
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.
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.
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
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!"
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
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
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
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
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
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
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
Monday, September 8, 2008
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.