tag:blogger.com,1999:blog-16538529234293639602024-03-14T00:23:19.462-07:00Phoebe Rose RocksJennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.comBlogger381125tag:blogger.com,1999:blog-1653852923429363960.post-55938266394405469552020-08-07T21:11:00.006-07:002020-08-07T22:42:55.101-07:00Ten <p></p><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7hHjEAn-mbmF6gXr9ObziSQOKraTGS8xQeMtgVtlv_YLROxG2ZE5SVS5p-ZJykb4FDrBPXmjl_B7KS4HHB0gb49ez_c8r0BNLvxg8Wpc6K_ifLBCvc3i17O5dTLM60d3H3bg4AS8VoVU/s640/blogger-image-705217774.jpg" style="display: block; padding: 1em 0px;"><br /></a></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2boNlLVxrhBPfU227qFphtSTmeKkI4J2UCtlxYOWJCXMXKaPZFsZi3KcKnDDv3KkVB0rNVmBDi1NuZ25leb_BPE17Nxgbw-Exn-U1LaJVamn1n1es_-dnzyE9kaWWFSOKqEymsplkXtc/s480/blogger-image-1242948922.jpg" style="display: block; padding: 1em 0px;"><img border="0" data-original-height="480" data-original-width="328" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2boNlLVxrhBPfU227qFphtSTmeKkI4J2UCtlxYOWJCXMXKaPZFsZi3KcKnDDv3KkVB0rNVmBDi1NuZ25leb_BPE17Nxgbw-Exn-U1LaJVamn1n1es_-dnzyE9kaWWFSOKqEymsplkXtc/s0/blogger-image-1242948922.jpg" /></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSSPHfPa589HOgn4XFAZFuTrEHr5FIuAwQphBzgdsKgCYjo77fXvv6rxy34QZQQreJkwD8a7rSILoJ6s08hHUuMXtbj_2UPkq8P3NNlhV6HsdtwpkyHVoXW1oR4hj9I_ItGF05mvey7jU/s852/20638812_10159185076330416_7392122277978577260_n.jpg" style="display: block; padding: 1em 0px;"><img border="0" data-original-height="852" data-original-width="815" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSSPHfPa589HOgn4XFAZFuTrEHr5FIuAwQphBzgdsKgCYjo77fXvv6rxy34QZQQreJkwD8a7rSILoJ6s08hHUuMXtbj_2UPkq8P3NNlhV6HsdtwpkyHVoXW1oR4hj9I_ItGF05mvey7jU/s640/20638812_10159185076330416_7392122277978577260_n.jpg" /></a></div><div class="separator" style="clear: both;"><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2boNlLVxrhBPfU227qFphtSTmeKkI4J2UCtlxYOWJCXMXKaPZFsZi3KcKnDDv3KkVB0rNVmBDi1NuZ25leb_BPE17Nxgbw-Exn-U1LaJVamn1n1es_-dnzyE9kaWWFSOKqEymsplkXtc/s480/blogger-image-1242948922.jpg" style="display: block; padding: 1em 0px;"><br /></a></div><p></p><p><span style="-webkit-text-size-adjust: auto; font-size: 17px;">It’s Phoebe’s tenth birthday. Happy birthday to our beautiful Phoebs.</span><span style="-webkit-text-size-adjust: auto; font-size: 17px;"> </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Phoebe would have been a spectacular ten year old and she would have absolutely loved being ten. Instead, she celebrated 5 birthdays and we have lived almost five years without her. Very soon, she will be gone longer than she lived. Knowing this is true seems impossible. It is more than heartbreaking or devastating, it just feels impossible. I mean really, how is it possible that we have lived this long without her? How is it possible that we will keep on living without her? </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Writing about Phoebe and about our grief is hard and it gets increasingly more difficult as time passes. Just like my living kids, I want to share milestones and moments. I wish I had photos and stories. Instead I have 5 years, 3 months, and 10 days of some breathtakingly beautiful and some absolutely heartbreaking memories, photos, stories, and moments. I have a lifetime to grieve and to wonder what if. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">I thought instead of sharing my deepest and darkest thoughts about grief and how it will never truly end, I would just write about Phoebe. I think this might be easier. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">I miss everything about her. Every. Little. Thing. But, here are a few highlights.</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Her laugh. Phoebe’s laugh was the best I have ever heard. It came from deep within her tiny self and made everyone around her laugh too. She would often throw her head back and get her whole body into it. Even as a baby, her laugh filled a room. She could be quite serious at times, but when she laughed, it just made the world better.</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Watching her eat. Phoebe was a true foodie and she loved to eat. This is surprising to some given that she was tube fed for much of her life, but when she had the chance, she would try anything. She loved to cook with her Daddy and I miss this so much too. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Singing. Phoebe’s favourite band was Weezer, but she loved all music, and she loved to sing. I still find myself glancing to the backseat when one of her songs comes on the radio. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Watching her grow. This will never get easier. I miss watching her grow and learn and being constantly amazed by her. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">The beautiful love she shared with Mae. I will always be grateful for the closeness that Phoebe and Mae had together. They were inseparable and Mae misses Phoebe everyday.</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Cake. Phoebe loved elaborate birthday cakes and even if what Jon and I created was far from the photo inspiration she found on the internet, she loved it just the same. This year, Mae designed, planned, baked and decorated a “campfire themed cake” for Phoebe’s big day. It is incredible. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Sitting with her. Just sitting and watching a show or reading a book. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Breakfast. When we lived in Memphis, Phoebe started a breakfast tradition where we would alternate making breakfast in bed. She would make breakfast with Jon for Mae and I, and then the next morning we would switch. Phoebe would shout, “good morning!” at the top of her lungs as she woke. It was the best.</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Freeze dance. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Her voice. I miss talking to her and listening to her sweet little voice. She had so many questions and even more incredibly thoughtful observations about the world around her. One of my personal favourites is when she told me “if there’s no bugs, there’s no people” and then went on to discuss in detail the many wonderful things worms, bees, and dragonflies do for the world. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Hugging, holding, rocking, singing, cuddling, smelling, kissing. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Running after her. Running with her. Chasing her bike. Carrying her when she was tired. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Holding her hand. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Putting her to bed. Waking up with her in the middle of the night. Waking up with her in the morning. Watching her sleep. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Colouring, crafting, and watching her draw. Phoebe was an artist, even at 5 years old. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">The little smiles she would give from across the room. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;">How particular and matter of fact she was about so many things. Birthdays could only be celebrated once and on the actual day. She was very clear about this. </p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Her wise eyes and how she would take everything in. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Her sense of humour. After being in patient at St.Jude for weeks, Phoebe decided she wanted to play some tricks on her nurses and doctors. With Mae’s help, she hid plastic bugs under her blankets, so when nurses pulled them back to check vitals ... surprise! She even convinced us to stick bugs to door handles and watched in delight as her doctors and nurses squirmed, wondering if they were real. This escalated to battery powered bugs that scurried frantically all over the floor. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;">Her big heart. Phoebe wanted to (and then did) feed all of the squirrels at the Target House, she brought water to birds when it was hot outside, and if someone said “ouch”, Phoebe was the first to ask if they were okay. </p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Her energy. Phoebe often seemed unstoppable. She had an uncanny ability to look perfectly well even when she was very sick. She played hard. She lived joyfully. She taught me so much. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Caring for her, taking care of her, being her caregiver, advocating for her, teaching her. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Everything. I miss everything.</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Happy birthday, Phoebe. Being your mom is a gift. We love you and miss you and wish so much that you were here. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVfhJMOCoAZxieUR3NoZItkYOXXxj5nw5lnSD9aPpZ2oClC67FjH-O4ayYxmkpozZrbDGO48alpoDp_E2XODIOwGe8URgDh7x4e2mm1T-H90IRDA8RxcwT9dfBRqDBzoft2C5h1Dbaenw/s2048/00A3AEC7-F49B-48C5-A743-C0E212618F75.jpeg" style="display: block; padding: 1em 0px;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVfhJMOCoAZxieUR3NoZItkYOXXxj5nw5lnSD9aPpZ2oClC67FjH-O4ayYxmkpozZrbDGO48alpoDp_E2XODIOwGe8URgDh7x4e2mm1T-H90IRDA8RxcwT9dfBRqDBzoft2C5h1Dbaenw/s640/00A3AEC7-F49B-48C5-A743-C0E212618F75.jpeg" /></a></div><span class="s1"><br /></span><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"></p><div class="separator" style="clear: both;"></div><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><br /></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com3tag:blogger.com,1999:blog-1653852923429363960.post-2144374957406210282019-08-07T19:26:00.002-07:002019-08-07T21:36:17.616-07:00Nine <div class="p1" style="-webkit-text-size-adjust: auto; color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span class="s1" style="font-family: ".sfuitext"; font-size: 17pt;">Tomorrow is Phoebe’s ninth birthday. Nine. I can hardly believe it. She would have loved being nine. I can just imagine her soaking up all of the newfound freedom and independence that comes with being a year older. As a five year old, Phoebe was fiercely independent and wise. I can only imagine her at nine. I can only imagine. </span></div>
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<span class="s1" style="font-family: ".sfuitext"; font-size: 17pt;">I think about Phoebe every single day, as parents do about their kids, only my thoughts are often consumed with questions and sadness. Phoebe isn’t here. As time marches on, I am learning how to manage these thoughts as I try to move forward and keep it together. Literally. I need to do this, so I can keep it together. We go about our days, and from the outside looking in, I think we appear to be a “normal” and happy family. We do often get comments about the large age gap between Mae and Penny - things like, “you waited a long time” or, “that’s smart because now you have a little helper”, or perhaps the most painful, “a lot easier than having two close in age”. The explanation to these comments leaves strangers feeling awkward and sad and probably regretting they asked, but for us the age gap between our living kids is more than a convenient lack of tandem diaper changes. We are forever aware of the person who fills this gap. Our beautiful Phoebe. I often imagine her in between her sisters, laughing, heads tilted toward each other, sharing secrets and snacks. As it should be. </span></div>
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<span class="s1" style="font-family: ".sfuitext"; font-size: 17pt;">That there is a missing piece is perhaps most obvious to Mae who lost her best friend and partner when Phoebe died. She is resilient, but lately, her often joyful and resilient exterior has begun to crumble slightly, revealing immense hurt, regret, and sadness. She is aware of the unfairness of it all and that her would be nine year old sister should have sat beside her on the rollercoaster this summer, or walked with her to the local pool, shared stories, rode the school bus, graduated to the next grade, and that she didn’t, is painful. Mae quietly struggles with this and parenting while also grieving is at times overwhelming. More than that, it is heartbreaking. Mostly because I know that other than be there when she needs me, there really isn’t anything I can do to fix her harsh reality. When Mae asks me hard questions like why couldn’t we help Phoebe, I don’t have any answers. Perhaps the most devastating is when she cries at night because she just can’t remember the sound of Phoebe’s voice, or picture her face when she closes her eyes. She says she’s afraid she will forget her face and it takes everything I have not to completely fall apart with grief. How did this happen? </span></div>
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<span class="s1" style="font-family: ".sfuitext"; font-size: 17pt;">Mae and I went to Roger Neilson House today, to meet with a memory quilt volunteer. Carrying bags of Phoebe’s special clothes, each piece filled with precious memories and moments, we sat with a volunteer and shared stories of Phoebe while holding her little things. The volunteer asked to see a photo of Phoebe and she spoke to Mae with kindness and understanding about how difficult it must be to lose a sister. We both left feeling a bit lighter and I realized when I got home how long it has been since I have spoken about Phoebe to someone who didn’t know her. How long it has been since Phoebe’s name wasn’t followed by awkward silence or sadness. We shared memories and stories and it meant everything to me and to Mae to laugh when remembering how much fun we had with Phoebe. The quilt will be a beautiful gift, but sitting with this woman and being able to share our sweet Phoebe was a gift too. </span></div>
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<span class="s1" style="font-family: ".sfuitext"; font-size: 17pt;">Phoebe’s birthday is a difficult day, but it is also a day that reminds us of the incredible little person that we got to call ours. The day that Phoebe came into this world was one of the happiest of my life. That I got to be her mom, to hold her, and care for her, to love her and be loved by her is worth this sadness and I would do it all over again (and again) if I could. If only I could. For Phoebe, I am forever thankful. Our immense grief and sadness is so because of the great big love we shared. </span></div>
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<span class="s1" style="font-family: ".sfuitext"; font-size: 17pt;">Do something kind today, in honour of our sweet Phoebe. She would love that. </span></div>
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<span class="s1" style="font-family: ".sfuitext"; font-size: 17pt;">Happy birthday, Phoebe Rose. </span></div>
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<span class="s1" style="font-family: ".sfuitext"; font-size: 17pt;">We work really hard to honour Phoebe’s memory by giving back and funding childhood cancer research. You can help by joining us at our annual golf tournament. It is going to be an awesome day and we need your help to “make it okay” <a href="https://canadiangolfclub.com/collections/phoebe-rose-rocks"><span class="s2" style="color: #e4af0a; font-size: 17pt;">https://canadiangolfclub.com/collections/phoebe-rose-rocks</span></a></span></div>
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Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com2tag:blogger.com,1999:blog-1653852923429363960.post-87650401404107301182018-08-01T08:36:00.002-07:002018-08-04T14:51:47.458-07:008 Should be Great.<div>
Phoebe's 8th birthday is approaching. I don't need to look at a calendar to know this, instead, I can feel it. My heart knows that, once upon a time, I counted the days until Phoebe arrived, two weeks behind schedule, on the 8th of August. My mind knows that once, I spent this time planning parties and searching the internet for elaborate cake ideas. Cake ideas inspired by requests spoken in the sweetest of voices; "Mama, do you and Daddy know how to make a wiggle cake?". Wiggle will forever be code word for minion, and that year, Jon and I pulled off the most impressively ugly, coloured with turmeric instead of chemicals, love filled Minion. We basked in the glow of Phoebe as she blew out her 5 candles in one impressive breath. She was a super hero. </div>
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We hoped for so many more, but that was the very last birthday we would spend with our precious Phoebe. As we approach the third birthday that we will spend without her, it pains me to know that we are over halfway to the day that Phoebe will be gone longer than she was here. How is this even possible? </div>
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My heart literally aches. It hurts. My memories are fading and as hard as I try to keep them sharp and fresh, they still fade because time marches on and Phoebe gets farther and farther away. How can I keep her here? How can I continue to remember her sweet voice, her smile, her laugh? What happens if the videos and pictures we hold so dear and depend on to see, hear, and remember her, disappear? This is one of my many nightmares, despite backing everything up countless times, and I often wonder, what grieving parents did before we were able to capture these precious images? Then I realize that all of the videos and photographs in the world can't comfort a grieving parent who only wants to hold and feel and breath in their precious child. </div>
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In less than a week, Phoebe should be/would be turning 8. She should be taking the swim test at the local pool and walking there with her big sister. She should be going to summer camp, trying out the new neighbourhood ice-cream shop, picking new recipes to make with her Daddy, playing until the sun sets, pushing Penny on the swing and laughing as she screams her name. She should be here, but she's not.<br />
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I don't really think it's possible to ever be completely "okay" after losing a child, but I have found myself in moments of okay and I have even experienced moments of joy. In fact, I often feel joy and sadness all at the same time. I have learned that managing grief is constant. It takes work to control the relentless push and pull, to weather the many storms and emotions that often take hold without notice, and often, to pretend it's okay. It's exhausting. Pain, regret, and sadness are magnified and at times unbearable as occasions like Phoebe's birthday approach. I don't get to watch her grow up. I don't get to watch and smile and take photos of Phoebe as she blows out 8 candles. I have a photo of Phoebe blowing out 5 candles and when all of my other children have grown so big that we make jokes of candles taking over the cake, my Phoebe, she will always be 5.<br />
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I can't really imagine Phoebe at 8 because Phoebe is 5. She is feisty, determined and so smart. Phoebe loves Minions, Sid the Science Kid, Frozen and singing along to her favourite songs. She can build the most complicated Lego, like a boss. Phoebe's voice is sweet and feisty and she has a hard time pronouncing the letter l, saying "whittle", instead of "little" which is so endearing when you are 5. It is painful and heartbreaking for me to try to imagine what my daughter would be like if she were here and 8 years old because as hard as I try, I just don't know. We have already missed and ached for so much lost time.<br />
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And so, we exist in two places. We are in the here and now where we go about our days, raise our kids and watch them grow with a deep and profoundly thankful gratitude, we laugh often, and we struggle daily through the pain and emptiness of losing a child. </div>
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And then we exist in the past, because this is when we were with Phoebe.<br />
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Living in the past doesn't mean we are stuck. It doesn't mean we can't and don't appreciate what we have here today and all that the future holds. We exist in the past because, in many ways, this is where Phoebe lives. We exist in the past because it is the only way we know how to keep our fading memories alive and the only way we can help Phoebe's baby sister know her, even if just a little bit. We exist in the past because we will never again have another photo, or memory, or experience with our sweet girl.<br />
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This August 8th, please take a moment to honour and celebrate Phoebe's birthday and her life by doing something kind in her memory. If you are able to, please consider giving blood. You never really know how precious a gift this is until the life of someone you love literally depends on it.<br />
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We would also love for you to join us in our quest to "make it okay". The Third Annual Phoebe Rose Rocks Foundation Golf tournament is coming up on September 9th at the Gatineau Golf and Country club, and all funds raised will support much needed childhood cancer research. Details can be found at www.phoeberoserocks.com </div>
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Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com0tag:blogger.com,1999:blog-1653852923429363960.post-26158120942450861162017-11-17T19:32:00.001-08:002017-11-18T15:26:03.661-08:00Two years ...<div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Two years ago, we slept upright in a hospital arm chair pulled up as close as possible to Phoebe's bed. This was not our first time sleeping in a hospital chair, Jon and I alternated chair sleeping for months, years actually, but this chair sleep would be our last. We honestly had no idea that Phoebe would leave us so quickly. We had hoped that we would be able to bring her home, to witness another miracle, to heal infections, to surround her with family and friends. As hard as it was for us to accept or even admit, we knew that she was dying and going home meant we would be able to leave the ICU. Home has a pediatric residential hospice which I realize is something that is hard to talk about, but is a service that is needed and something we desperately wanted for Phoebe. </span></div></div><div><br></div><div>On this last night two years ago, I wish I had curled up next to her. I wish I had asked the million questions that were running through my mind. I wish I had asked her if she was scared. I wish we had talked about what was happening. We talked about Christmas, her birthday, and writing letters to Santa, but not a word was said about dying. I just couldn't do it. Instead, our brave, brave Phoebe let us know it was okay. She told us she didn't want to get better. She said she didn't want anymore tubes, and she told us in a way only Phoebe could, not to be upset. I wonder everyday if she knew she was dying. I would do anything to go back and be strong enough to talk to her about it. I would do anything for just one more moment. </div><div><br></div><div>I replay these last moments on last days over and over in my head. I remember two nights before Phoebe passed, I had left the ICU briefly to take Mae and my mum back to the Target House. I had to sneak Mae out of the hospital that night as Phoebe didn't want her to leave. I remember telling her that I was putting Mae to bed, so she wouldn't get upset (they had parent rooms actually connected to the patient room at St.Jude). I came back to Phoebe's room in the ICU to find that she wasn't there. I started to panic until I saw her in a nearby room smiling from ear to ear and waving at me. The room she was in was too cold, so she was moved. She was excited to be in this new room and she insisted that the lights, and all of them, be on with the dimmer on the brightest setting. It was crazy bright and close to, if not after midnight, and there was Phoebe basking in the glow of the lights. She was just beaming and I often wonder if she knew something that we didn't. That she may have is honestly what keeps me going on the very darkest days. </div><div><br></div><div>On November 18th 2015, we woke up from a night of very little sleep expecting to take a medical flight home to Ottawa. I know the staff at CHEO were expecting us and that the preparations made by both hospitals to try to get Phoebe home were nothing short of heroic. That morning we learned that Phoebe would not survive the flight and so we did what Phoebe asked us to do and we removed the bipap mask that had been helping her to breathe and replaced it with high flow nasal oxygen. We naively thought she would be okay and would hold on, if only for a little bit. Having never spent a lot of time in the ICU despite our many struggles, we truly didn't understand or allow ourselves to believe she was really so sick, but as soon as the mask came off and she could speak, she asked where her Mae and her Granny were and then waited for them to arrive before she closed her eyes and never came back. We had three hours with Phoebe that morning, from the moment she woke, to the moment she took her very last breath. I still can't believe she is gone. </div><div><br></div><div>We lost a lifetime of moments when Phoebe died. We lost her presence in every single future moment of our lives and because this is true, it often feels like we lose her over and over again. We are as heartbroken, lost, shattered, and devastated as we were two years ago, but we have somehow learned how to better carry the incredible weight of our pain and sadness, although at times it is honestly just too much to bear. The world keeps turning despite the huge piece that we know is missing and so we do the only thing that we can, we keep turning too.</div><div><br></div><div>Phoebe taught us that even on the very darkest days - there is reason to laugh and hope. She taught us to always look for the joy and when I close my eyes, I can still see her twinkling eyes and hear her great big belly laugh. It truly was the greatest sound. I can still see her; bright and shining.</div><div><br></div><div>We miss you so much, sweet Phoebe. </div><div><br></div><div>"Ring the bells that still can ring</div><div>Forget your perfect offering</div><div>There is a crack, a crack in everything</div><div>That's how the light gets in". Leonard Cohen </div><div><br></div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVoJBvnCjWoEpqBHd3aLP_fsv7Bl-gTpIxYh73skN9WuHi3FBvyeP-86LZca-fVzZj1eyJ6uP8UxUOBR17GQLbu6E7-_cAftLSWMm0eE7rwcHakBwHISl7NSNqgk1SEAQB1eJeU6-y0Y4/s640/blogger-image-313781967.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVoJBvnCjWoEpqBHd3aLP_fsv7Bl-gTpIxYh73skN9WuHi3FBvyeP-86LZca-fVzZj1eyJ6uP8UxUOBR17GQLbu6E7-_cAftLSWMm0eE7rwcHakBwHISl7NSNqgk1SEAQB1eJeU6-y0Y4/s640/blogger-image-313781967.jpg"></a></div><br></div><br></div><br></div><br></div><br></div><br></div><br></div><br></div><br></div><br></div><br></div><div><br></div><div><br></div><div><br></div><div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com3tag:blogger.com,1999:blog-1653852923429363960.post-5432093882999938442017-08-07T19:02:00.001-07:002017-08-07T19:22:48.899-07:00Happy 7th Birthday Phoebe Phoebe's seventh birthday is tomorrow. Instead of blowing up balloons and decorating the house in anticipation of my sweet seven year old Phoebe waking up in the morning, today I planted flowers at her grave and tomorrow we will have her favourite foods, release balloons, and search for a sign that she knows how much she is loved and missed. My heart aches.<br />
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I wish I could watch her grow. I wish I knew what kind of cake she would want me to bake. I wish I could see her blow out the candles. I wish Mae and Penny could have their sister. I wish. I wish. I wish.<br />
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I wonder often what she would be like. How tall would she be? Would she be riding a bike without training wheels? Would she still love the beach? Would she like school and be excited for grade 2? Would she have the same favourite foods? Would she still like us to put her to bed? What kind of books, music and movies would she like? Would she still love to dance? Would she help feed and change Penny? What would her and Mae talk about for hours at bedtime?<br />
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This grief is harder and heavier than I ever could have imagined. There is a constant and dull ache, but some times it hurts so much I can barely stand it. Like a relentless storm, it wakes me up in the middle of the night or stops me in the middle of the day. It leaves me breathless, broken, and longing for just one more moment with Phoebe. Just one conversation - I have so much to tell her. One cuddle. One moment just to hear her laugh. Once moment to hear her voice. One chance to tell her how much we love her and miss her. One chance to tell her that we would have done anything to save her and we tried as hard as we could.<br />
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In the absence of these moments, I plant flowers, search for signs, release balloons, light candles, and celebrate the birth of my sweet Phoebe Rose. She came into this world fierce, strong, and determined and that day is one of the happiest and best days of my life. I can still remember every single moment and in many ways it feels like it was yesterday. I am so grateful that I got to be Phoebe's mom, even if we only had 5 years. I soaked up the beauty and the feistiness of Phoebe and I took none of it for granted. I wish with everything I have that we could have watched her grow up and it still feels impossible that we can't.<br />
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And so, on this second birthday without our precious Phoebe we will hold Mae and Phoebe's baby sister Penny close and do what we can to honour Phoebe's life. What Phoebe went through is not okay, it never will be, but we are working hard to make things better for other kids and families who are affected by childhood cancer. I think Phoebe would be proud.<br />
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Spread some love and kindness in honour of our sweet Phoebe tomorrow and share your random acts of kindness with us on social media. We would love to know that people smiled and were happy on Phoebe's birthday.<br />
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Let's start a movement of kindness, love and HOPE in memory of Phoebe.<br />
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And, if you would like to join us to golf on August 12th - it's not too late to sign up and we still have room for golfers. It's going to be an amazing day and all funds raised will fund childhood cancer research and help us fulfill our promise to Phoebe - to make it okay. For more information please visit <a href="http://www.phoeberoserocks.com/">www.phoeberoserocks.com</a><br />
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"Even if I knew that tomorrow the world would go to pieces I would still plant my apple tree". Martin Luther. <br />
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We love you so much, Phoebe. <br />
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<br />Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com3tag:blogger.com,1999:blog-1653852923429363960.post-79133064688999778922017-06-20T18:23:00.001-07:002017-06-21T13:57:46.642-07:00<div>While buying groceries yesterday, the cashier and I started talking about how close it is to school getting out for the summer. </div><div><br></div><div>It was hot yesterday and I probably looked tired. She looked at me and said, I bet mom isn't looking forward to school ending. Then; well you just have the one and a baby, so you won't have kids fighting. I have three all grown up, she said, and they always fought. </div><div><br></div><div>Oh, how I miss my feisty Phoebe. </div><div><br></div><div>I smiled and said that I can't wait for school to get out for the summer. That I love having my kids at home. She said - well I bet you won't be saying that in August. I smiled again, but this time said nothing. She looked at me, again noticing the baby I was carrying, and said that waiting to have kids so far apart was smart. No fighting, she said again. </div><div><br></div><div>I smiled again, but on the inside, I was screaming. I wanted to tell her that I have three kids too. That I didn't wait. That I had it perfect once. I wanted to tell her all about Phoebe. How she should be 6, but instead I just smiled and pretended everything is okay. </div><div><br></div><div>I miss Phoebe so much. I miss her feisty personality. I miss her laugh. I miss her little voice. I miss how she felt in my arms. I miss every single thing about her. I wanted this woman to know that I would do anything to have it perfect again. That even fighting, tired out from summer, frustrated kids, are perfect if they are here and healthy. That we shouldn't take anything for granted. </div><div><br></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">It has been a long time since I have posted a blog. </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">We are still here and "we" are now 5. Mae and Phoebe have a baby sister named Penelope. </span></div><div><br></div><div>Little Penny (that's what we call her) is a bundle of happiness and laughter and she brightens our days. She is like a ray of sunshine and she reminds us to look for the joy, just as her big sister Phoebe would have wanted. It is so nice to see Mae's face light up with pure happiness and love again. Penny looks just like Phoebe, but also like Mae. She has Phoebe's wise eyes and Mae's big smile. </div><div><br></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Learning that I was pregnant brought a huge range of emotions - mostly joy, but also sadness. Perhaps the hardest part was knowing that Penny will never get to meet her big sister Phoebe. She will know her, we will make sure of that, but it will be through photographs, stories and videos. I know that Phoebe would have been a wonderful and attentive big sister - I imagine her laughing like crazy at some of the things Penny does and it breaks my heart again and again that she was never given a chance. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">As we waited for Penny's arrival, Jon and I completed the impossibly hard task of emptying Phoebe's drawers and closet. Phoebe shared a room with Mae, but her clothes and things were always in the playroom. Packing her little things into boxes and bins was heart crushing and so much harder than I imagined. It took months. We came across clothes and toys that brought back beautiful and happy memories, but many of the clothes in her drawers were never worn; they were size 5 dresses, shirts and pants tucked away in anticipation of the return of a little girl that never came. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">We miss her so very much. </span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">The thought that Phoebe should/would be turning 7 in August takes my breath away. How can that be when I still can't believe she's gone? I wonder what she would be like. What music would she sing along to? How tall would she be? She seems so far away, yet I think of her multiple times a day. I worry that my memories of her are getting blurry - that one day I will no longer be able to close my eyes and see her perfect face or hear her laughter. I worry that as time marches on, she will slip farther away, and because of this I feel like I lose her over and over again, every single day. </span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">I now understand why people say that the second year is harder than the first. The numbness has faded and has left behind a desperate need to keep Phoebe close; to keep her from slipping away even more. We live in the past because this is when Phoebe was here, but as more time passes, it becomes harder. Life just doesn't allow this and so we straddle the here and now with the time when we had Phoebe. As the world and everyone around us keeps moving forward, Phoebe remains forever five years old. The things she will never see or do just keep adding up and each one breaks my heart. They each represent something else we have lost and at times the loss and ache is constant. </span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">And so, we do something everyday to honour and remember Phoebe. We talk about her. We laugh. We hold Mae and Penny close and love to watch them thrive and grow. We work to fulfill our promise to Phoebe; to make it okay.</span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">In April, the Phoebe Rose Rocks Foundation became recognized by Revenue Canada as an official registered charity. Our mission and goal is to fund promising childhood cancer research, specifically research of cancers that have a low prognosis, while supporting families who need to travel for treatment. We have big plans and have been working hard. We are partnering with Childhood Cancer Canada to fund a national research grant competition that will focus on hard to treat cancers. The cureless. We want to drive research into areas that have seen little progress. We are volunteer driven, which makes it possible for us to give all that we raise, and we are still fueled by hope, only now our hope is for other families. We wish nothing more than for no other family to feel the pain we feel everyday. </span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">Our second annual golf tournament is coming up on August 12th at Mont Cascades golf course in Cantley, Quebec. We are busy planning a great tournament, we have amazing prizes (like 2 return tickets to any WestJet destination), and all funds raised will be matched by Childhood Cancer Canada. An incredible oppurtunity for us to double our impact.</span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">Please join us. Tell a friend. Help us make a difference. There is strength in numbers. </span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">To register to golf or sponsor a hole please visit: </span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">https://golfmontcascades.golfems2.com/event/phoebe-rose-rocks-foundation-second-annual-tournament</span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYTfcLTJHXL2ML3h4etN7fvM_-VxO1P_7-HH18GCrBFT7HY7lirferoMG2iRssru4Bx6r2nyFPCcPwH3apsbAtLPg-056h52CIKZZqlQMBtLpQ4TCzIPgz996i69BuhAlSLf2W4O7TDf4/s640/blogger-image-874661623.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYTfcLTJHXL2ML3h4etN7fvM_-VxO1P_7-HH18GCrBFT7HY7lirferoMG2iRssru4Bx6r2nyFPCcPwH3apsbAtLPg-056h52CIKZZqlQMBtLpQ4TCzIPgz996i69BuhAlSLf2W4O7TDf4/s640/blogger-image-874661623.jpg"></a></div><br></div><div><div class="separator" style="-webkit-text-size-adjust: auto; clear: both;"><br></div><div class="separator" style="-webkit-text-size-adjust: auto; clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZy5TIOAk12k1sg1GjL05Uc3TaNC4eaV01ee5C1vhosqH-JkD0V9nqmSeUAIZYgu-I6DgLRvRldh4ajk4nYx-feu_OWGqT70g4etZAGHQ_U8S1mhxTheedyf_JhF4y_4U0YGie5Yzx-EM/s640/blogger-image-452012019.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZy5TIOAk12k1sg1GjL05Uc3TaNC4eaV01ee5C1vhosqH-JkD0V9nqmSeUAIZYgu-I6DgLRvRldh4ajk4nYx-feu_OWGqT70g4etZAGHQ_U8S1mhxTheedyf_JhF4y_4U0YGie5Yzx-EM/s640/blogger-image-452012019.jpg"></a></div><br></div><div class="separator" style="-webkit-text-size-adjust: auto; clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI7qcGVmBKlP4W3drLGRMnDafXVBKETMU00O3gFmBwXYLfl1DtYqS0imxMD1ZF-TKV95Z3vV5t7lSUfIgwZnIqc0Nu68GpKt0dvzbOx1ItPYtg6LLq2PUqqumHIGpIaYhOOqNS9I4vDSM/s640/blogger-image-958455861.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI7qcGVmBKlP4W3drLGRMnDafXVBKETMU00O3gFmBwXYLfl1DtYqS0imxMD1ZF-TKV95Z3vV5t7lSUfIgwZnIqc0Nu68GpKt0dvzbOx1ItPYtg6LLq2PUqqumHIGpIaYhOOqNS9I4vDSM/s640/blogger-image-958455861.jpg"></a></div><br></div><br></div><br></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><br></div><div><br></div><div><br></div><div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com1tag:blogger.com,1999:blog-1653852923429363960.post-50134269203888363282016-11-07T05:42:00.001-08:002016-11-16T10:06:29.558-08:00One year<div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">On Friday, we will have spent an entire year without our precious Phoebe. A year. I'm still not sure how this is possible. I still think I must be having a nightmare. I still expect to see her, hug her, hear her voice - I still look for her everywhere.</span></div></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div>Yet, we <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">get up everyday and greet the day. We take good care of Mae and love her with everything we have. We honour Phoebe's life and legacy with everything we do. We put one foot in front of the other despite how painful and exhausting this can be. We look for the joy, as Phoebe taught us. We have come to understand that our hearts will never fully heal, but in those places where we are broken, I imagine that the great big love we have for Phoebe is building pathways around this pain, helping us to breathe in and out, and find our way. I know that Phoebe would want exactly this. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">As time passes, the reality that Phoebe is not here has become painfully clear and because of this, at times, the grieving process is so much harder. The reality that, in this lifetime, we will never see Phoebe again, never hear her sweet voice in the present, hold her, kiss her, hug her, listen to her wise stories, watch her grow, and hear her beautiful laugh - is unbelievably hard to accept. How is this possible? I can't accept it. I will live with this reality, but I will never accept that I don't get to watch Phoebe grow up with all of the beauty, chaos, and worry that would surely come with this. I would do anything to be given the gift of seeing the beautiful person Phoebe would become, year after year. I would do anything to argue with my teenage Phoebe. I would do anything for just one more day. </span></div><div><br></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">This year has allowed us a lot of time to think. I have learned that grief is not a neat little package of stages that we work through to a conclusion of acceptance and then move on. I have learned that losing a child is not something that can be overcome, rather it is a weight that can only be carried. It is a lifetime of missed moments and within those moments; heartache. I imagine and I hope that I will get better at carrying this weight, but I know that, for as long as I live, every occasion or moment that Phoebe is missing from, everything, be it Christmas, birthdays, first days of school, walks to the park, bike rides, bed time, Halloween, days at the beach, or just simple mealtimes - her absence, and this weight, are simply unbearable. </font></div><div><br></div><div>As the date of Phoebe's death approaches, I am overwhelmed with flashbacks to those finals days, moments and hours. The last night we spent together. The last week. Phoebe's last breath. Moments of heart shattering desperation and helplessness. Moments of clarity and peace. Moments that no parent or child should have to endure. I wonder if we could have done more. I worry that we didn't do enough. I wish we had more time. We had been hearing terrible news regarding Phoebe's health for years. We had many talks with doctors about end of life before it was our time, that when it was Phoebe's time, we were very much in the dark. Everyone in the ICU knew that Phoebe was dying, except us. We still believed and hoped and prayed for one more day. We even tried to get Phoebe home, but in the end - just like everything else - Phoebe left us on her terms. </div><div><br></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We miss her every single day. Every moment. She is present in everything we do, yet her absence is profound and painful. She is everywhere and nowhere all at the same time and it often takes my breath away.</span></div><div><br></div><div>Mae talks about her love for Phoebe and her sadness every single day. At bedtime, she wishes out loud for Phoebe to come back - even if just in her dreams. She worries and wonders if Phoebe is okay. She talks to Phoebe and hears her voice and despite her sadness, despite all of our sadness - we continue to look for and choose joy and hope. Phoebe would want exactly this. </div><div><br></div><div>On November 18th (and every day because the world needs it) please spread some extra love and kindness in honour and memory of our sweet Phoebe. Surprise strangers with a random act of kindness, tell them Phoebe sent you and ask them to pay it forward. We would love for you to share your kind acts with us on facebook or twitter @phoeberoserocks. Say Phoebe's name, share her story. Give the best gift and sign up to donate blood. Make a donation to childhood cancer research - you can give to our run for St.Jude at http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2109846&pg=personal&fr_id=59186</div><div><br></div><div>Hug your kids and your loved ones - hug them tight and then hug them again. Never miss an opportunity to tell those you love just that. Be thankful. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_eWGxLUst683Y7BLWoyCCa3woyh0JlA-ukL1C4WOVYF08A_ee9wWlKS_AtJNng7tK_Mb67LFBTV-VxUisKLpBjJlD_nYEQLKEG5e7wED4CAs3_dfvIF2y9A-irLa1h2quQ4CBeyiQPZA/s640/blogger-image--333495686.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_eWGxLUst683Y7BLWoyCCa3woyh0JlA-ukL1C4WOVYF08A_ee9wWlKS_AtJNng7tK_Mb67LFBTV-VxUisKLpBjJlD_nYEQLKEG5e7wED4CAs3_dfvIF2y9A-irLa1h2quQ4CBeyiQPZA/s640/blogger-image--333495686.jpg"></a></div><br></div><div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com1tag:blogger.com,1999:blog-1653852923429363960.post-6782984242544057922016-09-21T06:48:00.001-07:002017-05-13T18:30:23.944-07:00Gold on the Hill<div>I was asked to share Phoebe's story at the 4th annual Gold on the Hill event for Childhood Cancer Awareness. Here is what I said ... </div><div><br></div><div>I have thought a lot about what to tell you today. In October 2010, my daughter, Phoebe, was diagnosed with infant leukemia. I wondered - should I tell you all of the shocking statistics surrounding childhood cancer? That it is the leading cause of disease related death of our kids, yet receives only 3% of federal funding? Should I explain that there are children in Canada who are sent home on hospice because they are unable to access clinical trials out of province? Should I describe how financially, emotionally and physically devastating a childhood cancer diagnosis is on a family? I thought that instead, I would tell you about Phoebe - her story and her life, because they speak volumes to how we need to do better for children with cancer in Canada. </div><div><br></div><div>Phoebe was 9 weeks old when she was diagnosed and we were told that she had a 15% chance of surviving her disease and harsh treatment. Imagine knowing that your baby's chances of dying far, far outweigh those that she will survive. It was, and will always be, completely devastating. </div><div> </div><div>But, we believed that Phoebe would be okay and we promised to do everything possible to save her. Phoebe's treatment was 6 months of mostly high dose chemotherapy - spent entirely in the in patient unit at CHEO, and a bone marrow transplant at SickKids. We spent a total of 9 months in-patient at the hospital and by the time we were finished with transplant, Phoebe was completely tube fed, she had lost the ability to sit up by herself or bear weight on her legs. She completely lost her voice – but through it all she smiled, and we believed that this was her cure. That it would all be worth it in the end. </div><div> </div><div>10 days after we returned home from SickKids, we learned that Phoebe had relapsed. The cancer was back and she was given weeks to months to live. We were told at this time that there was nothing else we could do and we were advised to bring Phoebe home and keep her comfortable.</div><div> </div><div>This was in 2011 and Phoebe was about to celebrate her first birthday. For the first time, I think we realized just what we were up against. High risk infant leukemia has very few, if any, long term post transplant relapse survivors. There was simply no data, no research, nothing to suggest that she could be cured, but we were desperate to try. We still believed that she would be okay. </div><div> </div><div>We found one clinical trial in Toronto and traveled back to SickKids. We were so weary and the idea of putting Phoebe through more treatment after what the chemotherapy had done to her tiny body was daunting, but our doctor described this new trial as exciting – he said the drug was targeted, gentle, and promising and that was all we needed to move forward. Phoebe would be the first Canadian child to receive this investigational drug - a first in its class immunotherapy, and unlike chemotherapy, she experienced no side effects. It rid her body of 60% of disease - not enough enough as 30% remained, but to us it was a success. It gave us hope and it opened our eyes to how important and game changing targeted and immunotherapy therapy is.</div><div> </div><div>This drug and this point in Phoebe’s journey is also pivotal because it marks the very last time we were able to access or receive any innovative treatment in Canada. This was in 2011.</div><div> </div><div>We moved on from SickKids and traveled to St.Jude Children’s Research Hospital in Memphis - a unique hospital in the US where treatment is provided without question to families who don't have insurance coverage. Phoebe received another clinical trial, not offered in Canada, using Natural Killer cells and an innovative transplant with cells harvested from me. Both were successful and she remained in complete remission for over a year.</div><div><br></div><div>When Phoebe relapsed a second time, we were at home in Ottawa. We had started to put our lives back together and Phoebe had learned to walk, run, jump, ride a tricycle, sing and talk non stop. CAR-T cell therapy was being developed in the US and we applied to OHIP for funding and were promptly denied. At the time this treatment was being heralded as the breakthrough cure for leukemia, but we weren’t able to access it. Instead, we returned to St.Jude where Phoebe received another clinical trial and she remained in remission for 18 months.</div><div> </div><div>Phoebe learned to ride a bike with training wheels, we enrolled her in kindergarten, and for the first time in 4 years, I retuned to work as a teacher.</div><div> </div><div>When Phoebe relapsed for a third time, our heart ache and devastation turned to pure fear. We had tried so many things. We were terrified we would lose her, but when we looked at her she was a picture of health. She had no symptoms of disease, her blood work was perfect. For once we had caught it early. Hope prevailed when we realized that for the first time there was a treatment being developed that was targeted to Phoebe’s very specific type of leukemia. This was a first of its kind therapy for a disease that has seen no advances in treatment or surivial rates in over 15 years. It was only available in the US, but SickKids was trying to open it. We applied for funding from OHIP – explaining that this was Phoebe’s only option, that it was targeted to her disease, that Phoebe simply couldn’t wait for it to open in Canada, that research into this disease is crucial – and we were denied.</div><div> </div><div>I remember feeling completely helpless, deflated, desperate. How could this be happening? We were told that OHIP, and this is true for every provincial health insurance policy, will not cover any treatment that is considered experimental despite how promising this treatment may be. This also means that Canadian kids cannot access treatment on early phase clinical trials within Canada if the trial is outside of their home province. We asked every single person we know to write a letter to their MPP, and Ontario’s Minister of Health. Many people who are here today wrote letters. It took almost 3 months, countless letters, interviews on CBC with Phoebe’s doctor from CHEO, more media coverage, and some behind the scenes work and finally we heard that the treatment would be approved and we were covered to travel to Denver.</div><div> </div><div>For us, however, that 3 months wait changed everything. It impacted our lives and created waves of complications that we would never overcome. Phoebe was no longer a picture of health with perfect blood work. She relied on blood and platelets to survive and she developed pneumonia due to a weak immune system overrun with leukemia. She began the clinical trial fragile and weak and it didn’t work.</div><div> </div><div>When we left Denver and headed back to Memphis and St.Jude to begin another clinical trial, the pneumonia that Phoebe had developed followed us and she suffered more lung infections. The clinical trial was successful and Phoebe was in remission, but we had no choice but to stop treatment and the leuekemia returned.</div><div> </div><div>We tried many other clinical trials and chemotherapy at St. Jude to keep the leukemia at bay. We were desperate for more time, but we were never able to make it home again. Phoebe died in the ICU at St.Jude on November 18th 2015. The ripple effects caused by a broken health care system followed us and we were always months behind. We missed a spot in the only curative transplant therapy by two months. It is an incredibly heavy and hard burden to bear and we will never truly know how things could have been, but I do know that if Canada had a system in place to allow children like Phoebe timely access to out of country and out of province treatment on clinical trials – it would have made a difference. No child should be left to wait for treatment as their disease rages out of control. No child should be denied access to treatment when this treatment may extend their life or possibly cure, and geography should never play a role in cancer therapy. It is simply unethical. Parents should not have to enlist the help of every single person they know to gain access to therapy. It should not be a fight, because we all know that when your child or loved one has cancer – there is too much fight already.</div><div> </div><div>Phoebe was a joy to be around, smart as anything and so wise, she found light where many only saw darkness – but having cancer as a child, she made clear to us – this was not okay. I can still hear her little feisty voice telling us “this is not okay” and I can hear her asking us to “make it okay”.</div><div> </div><div>Ours is an incredibly sad story and I thank you for listening. But it is also a story of hope. It is a story of a little girl who believed that anything is possible and her family that believed right a long with her. It is a story of research, progress, and innovation – a story of what can happen when we all work together. Phoebe was given a terminal diagnosis in Canada in 2011 because there simply was nothing available here to help her. She lived four and a half years past this diagnosis thanks to research, clinical trials in the US, and a lot of advocacy. This meant that Phoebe was able to celebrate 5 birthdays, not just 1. she learned to read, swim, ride a bike, she went camping and to her favorite beach. Her big sister will remember her. We had 5 years and although this will never be enough, it is something.</div><div> </div><div>The Canadian government directs just 3% of funding to childhood cancer research and Phoebe’s story – this is what 3 % looks like.,</div><div> </div><div>When Phoebe was here, we used to say that we would “shout it from the rooftops” – we shouted from the rooftops that she was cured when we were so very happy to have good news. And then, as it became clear to us that there was no cure, we shouted from the rooftops the sheer injustice of it all. Then Phoebe died and our shouts became whispers, pleading with the world to just make it okay. And now that Phoebe is not here, we try as best as we can to continue to shout it from the rooftops that we must do better for our kids, but we need your help. As we learned from Phoebe’s journey and our massive letter writing campaign – we are so much stronger together.</div><div> </div><div>Please remember what you have heard here today. Remember our kids and their stories. Take them with you and tell your friends, your family, your elected officials, your neighbours. Shout it from the rooftops that we need to do all we can to as Phoebe would say "make it okay". </div><div><br></div><div>Thank-you. </div><div> </div><div> </div><div> </div><div> </div><div> </div><div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com4tag:blogger.com,1999:blog-1653852923429363960.post-33873321577743612372016-09-06T19:45:00.001-07:002016-09-10T21:08:46.564-07:00Mae's letter to the Prime MinisterMonths ago, Mae decided she wanted to write to Prime Minister Justin Trudeau to invite him to Gold on the Hill, the childhood cancer awareness event held annually on Parliament Hill. This year's Gold on the Hill will be on Saturday September 17th at 6pm.<br />
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Mae sat down and wrote. She poured her heart out and we talked a lot about Phoebe. The letter she crafted is beautiful and completely heartbreaking and we are so proud of her for sharing her pain and her love so openly.</div>
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The letter has been shared almost 1000 times on Facebook. It reached the Prime Minister's director of communications and many people wrote to their MPs to ask their help in making sure it reached the Prime Minister. </div>
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We have since received a call from the Prime Minister's office and although the PM is unable to attend the event, he has offered to speak with Mae on the phone and his office has offered their help with the event. Mae is anticipating this call and has many things she would like to say. She is proud of what she has accomplished in memory of Phoebe and if you ask her she will tell you, that "it's not okay that Phoebe only got five years with us". </div>
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Progress, thanks<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"> to little Mae and her big, beautiful heart that is so full of love and longing for her sister, Phoebe.</span></div>
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Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com1tag:blogger.com,1999:blog-1653852923429363960.post-63055518261615806502016-08-03T12:09:00.001-07:002016-08-04T19:34:24.561-07:00Phoebe should be turning 6 this Monday. She should be blowing out candles, opening presents, and inviting her friends over to run through the sprinkler and play with her new toys. She should be racing her bike up and down the street, running to keep up with Mae, and laughing until her belly hurts. She should be helping her Daddy make her favorite foods and picking out the most complicated birthday cake. She should be getting ready for grade 1. She should be here, but she's not.<div><br></div><div>Instead of planning a party and loving every minute of it, we struggle with how to mark this very special day. How do you celebrate a birthday for a child that is so loved but not here? How do we honour and celebrate Phoebe's life? How do we let her know that she is loved beyond measure and missed every single moment? How do we include Mae in all of this and hold back tears? How do we make it joyful when all I want to do is pull the covers up and cry.</div><div><br></div><div>We miss her so much. </div><div><br></div><div>How do you parent a child who has died? I struggle with this every day. I struggle with the need to be Phoebe's mom, to care for her, to mother her even though she is not physically here. And while this is true, to me she is here in every other sense. She is here in my thoughts, my heart, my life. She is mine and I am hers and that will never change. And so, I mother her. I keep her things safe. I carefully frame and display her artwork. <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Photographs of her fill every room of our home. We plan to create a garden for her, complete with a carved stone by her Daddy. We plant trees. </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Her drawings still hang on the fridge, like she just created them. I imagine her lying on her tummy with her legs in the air - coloring and drawing. I picture her standing tall against the door frame to see how much she's grown. I imagine her telling stories and singing songs with Mae. She is present in our lives, in our house - but then she's not. </span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">She is everywhere and nowhere all at the same time. </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I tend to the plants at her graveside - I water them and after I do, I sit down and talk to Phoebe. Sometimes I sing to her. Sometimes I read. To some this may seem crazy, some people tell us we should move on, but there is no moving on from this and to me, all of this is all I can do to keep from going crazy. We spent every single moment with Phoebe while she was here. We did not leave her side. We relished every second we were able to be with her. Now that she is gone, we still need to be with her, but we struggle with how. </span></div><div><br></div><div>We started the Phoebe Rose Rocks Foundation (we are almost all set up with approval from Revenue Canada) so that we can help other families, because no one should ever suffer like Phoebe did, because we need a cure, because Phoebe asked us to "make it okay", but truly I also started it because I need Phoebe's legacy - her life and her memory, to continue. It is another way that I can parent my child who should be here, but is not. </div><div><br></div><div>This new life we have is so hard. It's painful. Each day we wake up with the realization that Phoebe is really gone. Sometimes at night, when Phoebe visits me in my dreams, I can imagine for a brief moment that she's here. I soak in this moment, but then, the sun comes up and I am hit hard with the painful reality that she's not. She should be, but she's not. </div><div><br></div><div>Grief is heavy and hard and it fills every space. Every single crack. It is all encompassing and keeping it in check is exhausting. I spend most of my days pretending that everything is okay. It's not. How could it possibly be okay? No one wants to hear stories of children with cancer and when people ask that innocent question of how many children we have - no one is expecting - two, one should be here, but she died. And so, on the outside we are "fine". We ride bikes with Mae, we play at the park and shop for groceries - we need to do this because the world just keeps turning, but on the inside we ache. I ache physically and emotionally from the sheer effort of pretending. My body literally hurts. My heart hurts. I can't catch my breath. I fight back tears.</div><div><br></div><div>And so, this Monday August 8th there will be no excited little girl anxious to start her day as a 6 year old. Phoebe will not instruct us on what she would like for her birthday breakfast and dinner. Instead we will prepare her favourite foods knowing so well that sushi, bean salad and pulled pork will never be the same. We will honour our sweet girl however, like we do every day. We will honour her memory and her life and we will continue to do all we can to make it better.</div><div><br></div><div>We will do as Phoebe taught us and look for the joy. We will surround ourselves with the quiet and peace of nature with the hopes of finding our girl. And of course there will still be joy because Mae wouldn't have it any other way and because joy is always found in the memories we cherish of our sweet Pheebs. </div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div>But we <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">will never be the same.</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Thank-you to everyone who has sponsored a hole, donated, provided items for the silent auction, and signed up to golf at the first annual Phoebe Rose Rocks Golf Tournament. We are looking forward to a great day and excited to give back and raise money for childhood cancer research. All money raised will be donated to Dr.Jason Berman's lab in Halifax, Nova Scotia and we hope to raise enough to direct to MLL+ leukemia research. For more information on Dr.Berman's groundbreaking lab and research, please visit </span><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">http://bermanzebrafishlaboratory.pediatrics.dal.ca</font></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">To register to golf, donate, or sponsor a hole please visit </span><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">https://golfmontcascades.golfems2.com/event/phoebe-rose-rocks-foundation-first-annual-tournament</font></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK7g05IaKToNi7s50ySQDiaNoxSnenO2YEixHTpQAyAcjopRfy6GF6WvSZPxBOSuvuiauQfJQYFISE8DF70nP5jBRveQi3Y2PsMG23g6oz9oQiE8jhAhAyxRCtW_3q96xnnG5SXaJLfWA/s640/blogger-image--1355573673.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK7g05IaKToNi7s50ySQDiaNoxSnenO2YEixHTpQAyAcjopRfy6GF6WvSZPxBOSuvuiauQfJQYFISE8DF70nP5jBRveQi3Y2PsMG23g6oz9oQiE8jhAhAyxRCtW_3q96xnnG5SXaJLfWA/s640/blogger-image--1355573673.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><br></div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com4tag:blogger.com,1999:blog-1653852923429363960.post-14190523622426141722016-07-28T19:16:00.001-07:002016-07-29T09:27:37.547-07:00<div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">"It was a fine cry - loud and long - but it had no bottom and it had no top, just circles and circles of sorrow". Toni Morrison </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It has been more than 8 months without our sweet Phoebe Rose. How is it possible that so much time has passed? Time does not heal all wounds, or at least not wounds like ours that can't possibly heal, and in many ways - with each passing day, it is more difficult to live without Phoebe. It is painful. We cling to the beautiful memories we have and do all we can to keep these memories alive and to honour Phoebe's life and continue her legacy of hope. One way we are doing this is the Phoebe Rose Rocks Foundation and we hope to have official charitable status from Revenue Canada in 2-3 months. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Phoebe's 6th birthday is coming up - she loved her birthday, but was very particular about how it was celebrated. It could only be celebrated once and always on her day. She also planned very far ahead and while she was here, she requested a mermaid cake and I know she would have loved to blow out the candles. This year, instead of planning a party, we are organizing a golf tournament in her memory. Please help us honour our sweet girl and help other children with cancer by registering for the tournament. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Please follow this link to register: https://golfmontcascades.golfems2.com/event/phoebe-rose-rocks-foundation-first-annual-tournament</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Cancer is the leading cause of disease related death for Canadian kids. Many cancers affecting children still have little hope of a cure. Phoebe tried every single treatment available, many of which were 50 year old chemotherapies, and she only ever had, at best, a 20% chance of beating her disease. This is not okay. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">All proceeds from the tournament will go to childhood cancer research, like the research that gave us 5 years with our precious Pheebs.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We love you and miss you so much, sweet Phoebe Rose.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq2tCgH4re1c3oFSwN0lRz5n0lzWozDYXF4AThDuARZfKZS1_uTFHM4aC1Z9bmpYKiwPd3atLf2MFUePwH7yEcNIa2yFee8BqkOWUlHaw_WZgNmkmPPaHXH3MvQx6hRnbG4H0B6bKGDTo/s640/blogger-image--542011804.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq2tCgH4re1c3oFSwN0lRz5n0lzWozDYXF4AThDuARZfKZS1_uTFHM4aC1Z9bmpYKiwPd3atLf2MFUePwH7yEcNIa2yFee8BqkOWUlHaw_WZgNmkmPPaHXH3MvQx6hRnbG4H0B6bKGDTo/s640/blogger-image--542011804.jpg"></a></div><br></span></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com1tag:blogger.com,1999:blog-1653852923429363960.post-40171280188005108932016-05-06T11:26:00.001-07:002017-05-13T13:50:31.541-07:00Mother's Day ...<div><br></div><div><br></div>My first Mother's Day without Phoebe and it still doesn't seem real that she's not here. <div><br><div>I miss everything about Phoebe. I miss her voice, her smile, her touch. Her laugh. How she felt in my arms. The tight hugs she would give - her little arms wrapped around my neck. I miss making her favorite foods and watching her cook with Jon. I miss watching her eat and how she loved her food. I miss helping her. I miss talking with her, drawing with her, and her wise ways. I miss taking care of her. Being with her. I miss hearing her sing from the backseat and shouting "turn it up!". I miss dancing. I miss watching her play and laugh with Mae. I miss putting her to bed at night and waking up with her in the morning. I miss running after her bike, holding her hand, carrying her when she was tired, rocking her to sleep, pushing her stroller. I miss every. Single. Thing. <div><br></div><div>This place we are in is very lonely. It is a long and hard road and we are just at the beginning. We are only just learning to live without Phoebe, but as I write that I want to scream - No!! This is not how it is supposed to be. </div><div><br></div><div>Imagine waking up every single day without your child. Imagine going to sleep wishing and praying you will see her in your dreams. Imagine wanting to stay asleep because this is when you see her. Imagine searching for her, for signs of her, but knowing that these signs will never satisfy your longing. Imagine never being able to hold your child's hand again. Imagine never receiving another handmade card and treating the ones you have like the most precious glass. Imagine the only connection you have with your child is through her things. Imagine inhaling deeply the scent of her clothes and toys, just to feel close to her. Imagine needing someone you will never have again, with every breath you take. Imagine the pain and heartache. It is impossible. </div><div><br></div><div>The empty seat at our table will always be empty. Mae will always miss and need her sister. Jon and I will always long for Phoebe. We will always feel guilt and regret and sadness. This does not mean that we won't or don't feel joy, of course we do, we have Mae to remind us of this, but the emptiness that remains is not easily or even possibly filled. How do you fill a space that once held a precious child? You don't. I have heard that we will learn to carry our grief, but I also know that this is the hardest thing we will ever do. And its hardness will last a lifetime. </div><div><br></div><div>Today I finalized the details for Phoebe's headstone. The most unnatural thing in the world is done. Phoebe's name, date of birth and date of death will be carved into stone. Her favorite things - a monkey swinging from a tree, butterflies, a squirrel and three little birds will also be carved. This was no easy feat and I would like to thank the staff at the Beechwood Cemetery and Rock of Ages for their compassion and kindness. We heard many times that extra care and attention was taken to make sure this stone is perfect for our special Phoebe. We were told that every one working on it knew about Phoebe and was touched by her life and her death. I know that as wrong as it feels to create a grave stone for my five year old, Phoebe would love that it incorporates her favorite things. </div></div></div><div><br></div><div>Carved at the bottom of the stone are words with a meaning we learned from Phoebe and Mae. Words they help us to live by. Words that remind me that this incredible ache and the pain I feel are because we have a love so great. </div><div><br></div><div>All you need is love.</div><div><br></div><div>We miss you and love you so much, sweet Phoebs. </div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0Q4gHpoN0wExMaByYkVqREDSEBjcOPVoa3ouLtFHhvu9h8ldte5mfG5GBaeqpJheDmnnMbc1Ol_uA9lqEpJANYOPPd2R5jd_zr0_7yAsI9kq2uaJOFBGd7DjTfdZZteUncN33E7pDeTg/s640/blogger-image-1584508775.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0Q4gHpoN0wExMaByYkVqREDSEBjcOPVoa3ouLtFHhvu9h8ldte5mfG5GBaeqpJheDmnnMbc1Ol_uA9lqEpJANYOPPd2R5jd_zr0_7yAsI9kq2uaJOFBGd7DjTfdZZteUncN33E7pDeTg/s640/blogger-image-1584508775.jpg"></a></div><br></span></div><div><div class="separator" style="clear: both;"><br></div><br></div><div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com9tag:blogger.com,1999:blog-1653852923429363960.post-7057822921601385802016-03-07T09:25:00.001-08:002016-05-02T10:06:12.766-07:00112 days ...I have been sick with the flu for the past week which has allowed me a lot of time to think and reflect. And cry. I have done a lot of crying. I learned that it's true - getting out of bed and breathing in fresh air really does help with feelings of overwhelming sadness, but when you can't get out of bed due to a debilitating flu - it's hard to escape.<br>
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Today marks sixteen weeks without our precious girl. 112 days without her touch, her smell, her voice. 112 days of living without. At times, it seems impossible. Impossible that it has been this long yet it already feels like a lifetime. </div>
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<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I often visit Phoebe's room and sit among the clutter. The years of boxes from Memphis. Dresser drawers filled with clothes that have long been too small and a closet full of big girl clothes waiting for a return that never happened. Her toys and books. Her artwork and creations. The stickers she "accidentally" stuck to the floor. The pencil scratches on the door frame that followed her and Mae's growth. </span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When Phoebe was healthy and well, her big sister convinced her to share a room and so we squeezed her bed into Mae's room. I remember asking them if they had enough space, and each of them assuring me that it was a perfect fit. It is truly the only time that Mae has ever slept through the night. Now, with Phoebe gone from this treasured space, she needs Jon or I to stay with her, as Phoebe once did. And so we do. </span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We are taking things one day at a time. We have more time than we have ever had before, but are often at a loss with what to do. Our roles as caregivers, our identity for so long, is gone. </span><span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Phoebe needed us to care for her, especially in the final months of her life, and I would return in a heartbeat to that world if I could. Despite all that happened in Phoebe's life, I truly never thought she would die, or at least not as soon, not as quickly, not in Memphis, and so I still feel like I should be caring for her. I am still catching my breath. </span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Today though, today Mae needs us, and I am grateful for this. Mae helps us through and in many ways, she always has. </span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">We are picking up the pieces and I imagine we will be gathering up and rearranging the fragments of our broken lives for a very long time. For the rest of our time. I know that these pieces will never fit together as they once did again, but I hope that one day, we will find a way to help them fit in a new way.</span></div>
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<span style="font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif;"><span style="-webkit-text-size-adjust: auto;">Something that helps me to cope, at least right now, is honoring Phoebe. Each day I try to honor her - sometimes it is in small ways. I feel the sun on my face and remember how Phoebe loved to play outside. I try to share our story, raise awareness, and do what I can to honour Phoebe's and our desire and need for it to be okay. I am not yet shouting it from the rooftops, as we once did, but I'm trying.</span></span></div>
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<span style="font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif;"><span style="-webkit-text-size-adjust: auto;">To honor and remember Phoebe in bigger ways, we are embarking on the long process of applying for charitable status, and in the meantime, Phoebe Rose Rocks has a Facebook page at www.facebook.com/phoeberoserocks</span></span></div>
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<span style="font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif;"><span style="-webkit-text-size-adjust: auto;">This page will update Phoebe's friends on events, fundraising, and other activities done in Phoebe's honor and memory. </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">There are no words for how painful this is. There is nothing I could write that would accurately describe the incredible ache and the longing I feel each day. My heart is simultaneously broken and full of so much love, and this love reminds me that there is always light and reason to hope. </span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">We love you and miss you so much, sweet Pheebs. </span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">"There is a crack in everything. That's how the light gets in". Leonard Cohen </span></div>
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Out first event is Childhood Cancer Canada's head shaving event, and guess what? We are looking for team members to join Phoebe's daddy, grandpa and friends. If you are interested in a brave new cut just in time for summer, or even a new look (we have a team member shaving his lifelong mustache!) please join us and help raise money for much, much needed childhood cancer research. For more information or if you would like to make a donation, please visit https://m.akaraisin.com/11683/team/102348#.Vt2_ZUW8SUM.facebook</div>
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<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Team Phoebe Rose Rocks going bald over the years... </span></div>
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Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com1tag:blogger.com,1999:blog-1653852923429363960.post-72520568098430799162016-01-01T08:15:00.001-08:002016-01-06T13:04:48.184-08:00A new year and it's our first year without Phoebe. It's impossibly hard. It doesn't seem real and it is harder than I could have imagined. How can we be starting a whole year without Phoebe? It doesn't feel like a happy new year as so many people say and if not for Mae, I would have pulled up the covers and woken up on January 2nd. <div><div><br></div><div>For many years, I looked forward to the new year. For some people it is a chance for a fresh start, but for us, since Phoebe's diagnosis in 2010, we hoped it could be a chance for a life without cancer. Phoebe was diagnosed with cancer late in 2010 and so naturally, we anxiously awaited the new year, desperate to say good bye to the year that brought us leukemia. We believed that 2011, and all the years that would come after it, would be lived without cancer. 2011 came and it brought remission, but it also brought relapse, and so once again, we found ourselves anxiously awaiting a new year. 2012 came and brought more remission and we spent all but 3 weeks of this year without cancer, so once again we looked forward to the new year. 2013 was our year without cancer. We had a full year and it was so good, but Phoebe was still receiving low dose chemo, so we looked forward to 2014. 2014 would be our year without chemo or cancer, but then it came and brought with it Phoebe's third and final relapse. We still held on to hope for a future without cancer and believed that 2015 would be our year. The year we would finally be rid of cancer. </div><div><br></div><div>2015 was the hardest year. As hard and unpredictable as the years before it, but without promise of remission or a cure for Phoebe's leukemia. We spent the entire year trying clinical trials and combinations of drugs in an effort to finally be rid of cancer. We were thankful for the time we had; the time given to us by these trials, research and new therapies. 2015 was wrought with complications, infections, and heart ache, but it was also full of so much joy. We laughed and played and enjoyed the life we had. Mae learned to ride a bike without training wheels and Phoebe learned to ride one with. They both squeezed out all they could from each day - whether it was a day at St.Jude or a day at the park. It was a good and beautiful life and as hard as it appeared from the outside, I would live 2015 over and over again if I had the chance. Over and over and over again. I would hug Phoebe tight and watch her play with Mae. Even the darkest days were bright days compared to these days without Phoebe. </div><div><br></div><div>We had no idea that 2015 would be the last year we would have with Phoebe, or that we would never get another chance to start off a new year with hope for Phoebe's cure and her future. We had no idea that 2015 would be a year of last moments and memories. Of last hugs and snuggles, last words spoken, and last kisses. We had no idea that we would never get another chance to start off a new year as a family of four. That Mae would be left to grow up without her precious sister and friend. We had no idea that Phoebe would leave us. </div><div><br></div><div>And so 2016 - you are bittersweet. Much more bitter than sweet as we look ahead to a year without our precious Phoebe. As we look ahead to all of the firsts without our girl and try to hold on to and remember the lasts. New Year, like every thing else, will be hard and different and we will do our best to make the most of this new life for Mae. I can't imagine there will ever be a time when I look at the new year with hope - eyes bright and open to possibility. </div><div><br></div><div>Or maybe the hope has shifted. And so,<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> as we embark on this new year without our precious Pheebs, as the busyness of the holidays fades away and our house is quiet and empty, I find myself asking for peace and healing. Please, be gentle with us 2016. Help us remember and honour our sweet Phoebe. Help us make it okay. Help us find the joy and hope in each day. Help us live life as Phoebe did - with joy, eyes wide open to possibility, heart full of love. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">We miss you sweet Pheebs.</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Thank-you to everyone who has made a donation in memory of our beautiful Phoebe. One reason we had so many beautiful moments in 2015 was because of research and it is so important to us to give back where we can, so thank-you for allowing us to do this. The research was never moving fast enough for Phoebe, but we have hope that in time, there will be answers. Please follow the link below to make a donation of hope. </span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">http://fundraising.stjude.org/site/TR/GiftFunds/GiftFunds?px=2109846&pg=personal&fr_id=39300</font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Some beautiful moments</font><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> from 2015 ... </span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh30lLJTM_X8B35F-sycIkzNc1VEzqN7iZkT3SczSwrsYlnfGPmi_OOn26toTbiLDDs9Qxqzez6ty-eg__nH0esk3meDMJmHP9VNOcwfAx_vjrVCDpnBhQ_oWCQmtc9u5IPGqpUnvnq_Nc/s640/blogger-image-348476601.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh30lLJTM_X8B35F-sycIkzNc1VEzqN7iZkT3SczSwrsYlnfGPmi_OOn26toTbiLDDs9Qxqzez6ty-eg__nH0esk3meDMJmHP9VNOcwfAx_vjrVCDpnBhQ_oWCQmtc9u5IPGqpUnvnq_Nc/s640/blogger-image-348476601.jpg"></a></div><br></font></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><br></div><div class="separator" style="clear: both;"><br></div><br></span></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCz1smtcw9_wgs9itqmMLAp3Dk5uY-mQgsQWSMswAV7huX7Pw1uc63vsIuOX0Ix47zYd4oWhKlPpLR1t-2tngd7nVLtpfxTu2Fx3T9jJGfzYm7LQP4fqOBuSJYA6ikYUc7YgJBfTVt3ds/s640/blogger-image-1264105840.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCz1smtcw9_wgs9itqmMLAp3Dk5uY-mQgsQWSMswAV7huX7Pw1uc63vsIuOX0Ix47zYd4oWhKlPpLR1t-2tngd7nVLtpfxTu2Fx3T9jJGfzYm7LQP4fqOBuSJYA6ikYUc7YgJBfTVt3ds/s640/blogger-image-1264105840.jpg"></a></div></div></div><div><br></div><div><div class="separator" style="clear: both;"><br></div></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRAnERHLVnBdPBPkpAwjaBKKl-wEFvXc9Zgt30vedUAKfXMuILwkjBUexAHMjJ9jJgFYrl-T0NOfJNuScIu2ljW4k6QlsmhiE5tZGM3uUXKKD5unYx4CblYgzG_kG-ZPDwNjyURy1Gs50/s640/blogger-image--1316327484.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRAnERHLVnBdPBPkpAwjaBKKl-wEFvXc9Zgt30vedUAKfXMuILwkjBUexAHMjJ9jJgFYrl-T0NOfJNuScIu2ljW4k6QlsmhiE5tZGM3uUXKKD5unYx4CblYgzG_kG-ZPDwNjyURy1Gs50/s640/blogger-image--1316327484.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><br></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS1Ipte-oGm01WYnXcCxndbQKUu-Mfhg77sgBzFZH0_vkejzy4-yCb4zbWf6iZomLB-5yGP83Dsrte0EirKjC35dCFJ9C01HFKiDQy2AqbBTP6wsMnfcHL-tNmknDM69Ca93m4QlnFUos/s640/blogger-image--1210958296.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS1Ipte-oGm01WYnXcCxndbQKUu-Mfhg77sgBzFZH0_vkejzy4-yCb4zbWf6iZomLB-5yGP83Dsrte0EirKjC35dCFJ9C01HFKiDQy2AqbBTP6wsMnfcHL-tNmknDM69Ca93m4QlnFUos/s640/blogger-image--1210958296.jpg"></a></div></div><div><div class="separator" style="clear: both;"><br></div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com7tag:blogger.com,1999:blog-1653852923429363960.post-22703828666622768132015-12-15T18:19:00.001-08:002015-12-18T09:01:22.994-08:00One month ...A few people have suggested that I keep writing, so here goes ... I'm going to try. <div><br></div><div>Writing about Phoebe started as a way to keep family and friends informed on all that was happening, but then it quickly became something more. For me, it was therapy. Writing helped me to feel like I was doing something, and even if it was just getting words out, I felt useful. I was the story teller and it was a joy to write about Phoebe. I wish I wrote more. I wish I shared more of her wit and personality. I honestly don't know if I can write about grief and what is left now without Phoebe. I think, like before, that it could be therapeutic, but it's sad and personal and unlike before where I shared Phoebe's story - this time it's mostly me. And it's hard. <div><br></div><div>It has been one month of missing Phoebe. One month of longing for her with every breath I take. One month of holding on. </div><div><br></div><div>It still feels like a nightmare - it most definitely is a nightmare, but it still feels like one I might wake up from. Despite all that Phoebe had been through and all of her many obstacles, I honestly never thought she would leave us. </div><div><br></div><div>Phoebe's death has opened my eyes to the world around me and I notice things I never did before; probably because I look for Phoebe everywhere. Not the Phoebe I need and want, but a sign, anything that will let me know she is here. The sound of the wind in the trees, sunshine through dark clouds, the hint of a rainbow without a drop of rain, three birds - always three, darting across the sky, the cardinal that visits us often, the sky lit up and painted, the brightest stars - to me they are all Phoebe. Noticing these things reminds me of the light that is still here, and so I hold tight to the belief that she is with me. </div><div><br></div><div>But, just like I feel Phoebe everywhere, everything reminds me of Phoebe. When I venture out of my house I am flooded with memories - places we have been, times we shared, food Phoebe loved, toys she would have wanted this Christmas, songs on the radio she would have loved and danced to, songs she did love and dance to, songs she would have told me to turn up, and others that would have her say, "no Mama, not this one". The empty space in the backseat, the empty seat at the table, our quiet house that was once full of the best kind of noise and chaos. The treasured Christmas ornaments Phoebe made that will forever be handled like they are the most breakable. The Christmas lights. Phoebe loved Christmas lights. Sometimes it feels like torture and it often appears so as it can leave me a mess of tears, but it's a welcome torture because it's all about Phoebe and so, I let the waves wash over me. </div><div><br></div><div>Just as there is comfort in the idea that Phoebe is with us, there is the constant reminder that she's not. She is not here, or not in the way that we need and want her to be, and to <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">long for something, to need something that I will never have again - is impossibly hard. And in many ways, it gets harder with each passing day. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I used to wonder why people say a child is lost when one dies. I have said this myself many times, but Phoebe is not missing. She is not lost. We don't need to simply look for her in the right place and there she will be. Found. Safe and sound. But then, when I find myself looking for her everywhere, when I search for and long for signs of Phoebe - when I wish to find her in a dream, it seems that in some ways, she is lost. She is lost in a way that I will never find. Or more likely, I am terribly lost, and Phoebe is gone. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I miss her so much. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">We are taking things as they come and doing what we can to honour Phoebe each day. Sometimes honouring Phoebe means getting up, making coffee, and facing the world. Sometimes it is putting up as many Christmas lights as we have because I know it would make her smile. It always means loving and caring for Mae and as Phoebe would insist, making sure she does her school work. Sometimes it is thinking about what's next. Phoebe would not want us to lay down and give up. She would want us to try. She would want us to live. She would want us to find the joy and happiness instead of the anger and hate, and as hard as this is right now - I will try. Everyday, I will try. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">We are thinking about forming a charitable foundation in memory of Phoebe with the goal being to raise money for childhood cancer research while helping to support families like ours, who need to travel far from home to receive treatment. What happened to Phoebe and how hard she fought, is not okay. It never will be, but maybe we can make it better for someone else. All of this is a dream right now, but one that we hope we can make happen. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Phoebe fought cancer for five years with outdated medicines. There truly was never an answer although we searched and searched and searched for one. There continues to be very few, if any, real answers that solve relapsed MLL + leukemia - in addition to the too many other childhood cancers for which there is no cure and this needs to change. We truly need to do better and I believe we can. </span></div></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">If you would like to give a gift of hope this Christmas, in memory of Phoebe, please follow the link below to donate to St.Jude. If you are donating from Canada, you need to reset the country of residence from the US. All funds raised will be directed to Dr.Gruber's lab and infantile leukemia research. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">http://fundraising.stjude.org/site/TR/GiftFunds/GiftFunds?px=2109846&pg=personal&fr_id=39300</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Thank-you for keeping our family in your thoughts. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWoEy7FGDqwsxLasFcj0UQNY4FPmxPijMvgLw81Tw55P9bNPkCog5ZH93RExplxbQbNG94d3bN1Xl-Vl4beQQabKKwDJLM_oBGcdIFmGDahgmeFAQtstF61cYSxoawO3kFe79hZ_F3OX8/s640/blogger-image-1710108319.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWoEy7FGDqwsxLasFcj0UQNY4FPmxPijMvgLw81Tw55P9bNPkCog5ZH93RExplxbQbNG94d3bN1Xl-Vl4beQQabKKwDJLM_oBGcdIFmGDahgmeFAQtstF61cYSxoawO3kFe79hZ_F3OX8/s640/blogger-image-1710108319.jpg"></a></div><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpu1ZUkofp7iLVCguiYXuYnz73Yz4o7L05UcrslzInbXtZXUpTEF6QydeS9wXFESp8xuceftPZ68v-hhM41vGX6lXPntDiW4z_3WEU1czur4MGniBZgxnmiMacu0KYFWYUTwH7JxJZb1M/s640/blogger-image-1332193860.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpu1ZUkofp7iLVCguiYXuYnz73Yz4o7L05UcrslzInbXtZXUpTEF6QydeS9wXFESp8xuceftPZ68v-hhM41vGX6lXPntDiW4z_3WEU1czur4MGniBZgxnmiMacu0KYFWYUTwH7JxJZb1M/s640/blogger-image-1332193860.jpg"></a></div><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com3tag:blogger.com,1999:blog-1653852923429363960.post-79965247432708758712015-12-15T06:59:00.001-08:002015-12-16T17:33:00.216-08:00<div>Phoebe's eulogy - November 29th 2015 </div><div><br></div><div>It is impossible to put into words how we feel or how much we will miss Phoebe, what she meant to us, and the intense void that she has left in our lives - so instead I thought I would share a few words about the small but mighty person that Phoebe was and the big legacy she leaves behind. </div><div><br></div><div>Phoebe was born on August 8th 2010 and from the very moment she entered this world, she was a force. We chose the name Phoebe because we loved it and it just seemed right. We learned after Phoebe was diagnosed with cancer that her name means "the bright and shining one" and warrior princess and she certainly lived up to her name. Phoebe was our bright and shining star - she was given a very difficult life, but to Phoebe it was beautiful. To Phoebe everything was worthy of joy and she made the most of every second she had. </div><div><br></div><div>Phoebe was wise beyond her years and often seemed to know more than we did. Looking back now, I think she probably did. Even as an infant, I remember thinking that her eyes were trying to tell me something. Like my Granny May would say - she's been here before. She was a beautiful old soul. </div><div><br></div><div>Phoebe never thought of herself as sick - as her parents, we worried and would always ask her how she was feeling and if she was okay - she would always say in her sassy way that seemed more like a teenager than a five year old - "I'm fine now please stop asking". She would not want to be remembered as the girl who fought cancer - she would want to be remembered as the girl who lived. Because she did. She lived her life joyfully and she opened our eyes to what life is truly about. Every chance she had Phoebe was trying something new. She laughed and played and jumped and danced and sang her heart out despite all that she was going through. Her energy was contagious and her laugh was the most beautiful sound. She was just incredible - the coolest kid. She had the best taste in music for a five year old, often requesting we freeze dance to pumped up kicks and weezer. Even at 3 years old, Weezer was her favourite band. She loved good food and much to her daddy's delight, would request he make her "restaurant food" and offer to help. She was fiercely proud - of herself and her big sister and all they would do together. She was feisty - so feisty and not at all afraid to speak her mind. Even at 5 years old, she made her wishes very clear. She bossed us all around, always reminding us to do what was right whether it be to put a seatbelt on, for Mae to do her homework, or to eat healthy food - just this past Halloween she reminded all of us that candy is bad and made sure Mae brushed her teeth after every sweet. we loved it. We loved her little voice. For five years, She defied all logic and science and thrived in the face of a very aggressive cancer. When babies relapse like Phoebe did, there are no treatment options, no cure, and often no hope. This hasn't changed, but Phoebe lived and loved and played for 4 and a half years after her first relapse. </div><div><br></div><div>Phoebe taught herself to read. One day, she asked if she could read a simple book to us and promptly picked it up and started reading. Jon and I looked at each other and mouthed the words - did you teach her this? She drew and painted with so much talent and creativity, that our hearts bursted with pride, Phoebe could put together lego well beyond her age with one hand; she was always the builder - Jon, Mae and I, the "piece finders". She believed she could and so she did. After spending 2 months in the hospital recovering from a stroke that affected her speech and large and fine motor skills, the very first thing Phoebe did when she got home was ride her tricycle. And she was fast. After a fungal infection that is normally insurmountable - Phoebe learned to ride a bike and a scooter. Ten days before she died she asked to try roller skating - and she did. Phoebe was a miracle - all that she accomplished, the time she had, each milestone - they were all miracles. At times it seemed that Phoebe was unstoppable, but then it was clear that our fearless leader needed a rest. </div><div><br></div><div>We learned so much from Phoebe and in many ways she was our teacher. We learned about love - what it is like to really and truly love because watching the love that was shared between Phoebe and her big sister Mae was the most beautiful thing I have ever seen. Phoebe loved with her whole self and we loved her right back. Phoebe taught us to speak up for what we believe in and to never give up. We learned to seize the day - that all of the little things that we complain about or think we need in life really don't matter. Phoebe taught us to always choose hope - that anything is possible. </div><div><br></div><div>Phoebe inspired us to be better. She inspired her community. Her journey taught us that we need to do better and Phoebe taught us that we can do better. She would often tell us that what she was going through was not okay - she was very clear about this - as much as she loved life and found joy - fighting cancer as a child and all that comes with this -- it was not okay. I have often avoided using the word fight to describe anything about Phoebe - it didn't seem right because it is not right for any child to have to fight for a chance at life, but These past five years, Phoebe really showed us how to fight - and now that Phoebe is not here we will continue her fight. Telling Phoebe's story does not end here, in fact, in some ways it begins. What we do now. How we honour Phoebe. How we make sure her story continues is so important. We have ideas and plans and we hope that each of you who was inspired by Phoebe, each of you who also grieves for our sweet Phoebe will help us turn our grief into something good. I know Phoebe would have wanted us to make it okay. </div><div><br></div><div>I wish so much that we were able to hold Phoebe longer, to hear her voice, to see her grow up. I know she would have been amazing and I will always wonder what she could have done. The time she had with us although too short was and will always be the most beautiful gift, it may have only been 5 years, but for five years, we watched Phoebe grow. For five years, we laughed and loved. For five years, I got to be Phoebe's mom. </div><div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com2tag:blogger.com,1999:blog-1653852923429363960.post-66263542518163287582015-12-14T08:06:00.001-08:002015-12-14T08:06:56.141-08:00In memory of Phoebe Rose<p style="margin: 0px 0px 6px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Thank-you to everyone who has made a donation in memory of our sweet Phoebe Rose. Giving back to St.Jude and supporting research that will make a difference and give hope to the too many babies diagnosed with this terrible disease and their families means so much to us. We know Phoebe would want us to try to make it okay - thank-you for helping us do this.</span></p><p style="margin: 0px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Please consider giving a gift of hope this Christmas by making a donation. We need a cure. </span></p><p style="margin: 0px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px; padding: 0px;"><span style="background-color: rgba(255, 255, 255, 0); -webkit-text-size-adjust: auto;">http://fundraising.stjude.org/site/TR/GiftFunds/GiftFunds?px=2109846&pg=personal&fr_id=39300</span></p>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com0tag:blogger.com,1999:blog-1653852923429363960.post-55755173567241349452015-12-03T17:42:00.001-08:002015-12-05T13:22:58.368-08:00We are still here. Making our way through each day without Phoebe is hard, painful, sometimes it feels impossible and still none of these words even begin to describe it, but that is all I have right now. We get caught up in the busyness of the day, and there are moments in which we feel okay, but then the waves come crashing in. How can it be that Phoebe is gone? How can it be over 2 weeks since we last heard her little voice? We long to hold her. To see her smile and hear her laugh. To just have more of her. We watch a lot of Phoebe videos and look at pictures. Mae asks to do this before bed and I am grateful to watch and remember all those times we laughed. Mae will often say - "we had a lot of fun together, me and my Phoebe".<div><br></div><div>Mae started school on Wednesday and although some tears were shed on the first day (by all of us), she is happy to be back. Seeing her smile and hearing about her day warms my heart. Listening to Mae talk about how they spoke about Phoebe on the first day and the beautiful and warm welcome she received was just what we needed. We are so grateful for the love, open arms and support that Mae and our family continues to receive from Manor Park. </div><div><br></div><div>We are often reminded of how loved Phoebe is or how she is remembered and honoured. We appreciate each comment, message, card, and act of kindness. It means so much to us to hear Phoebe's name and to know how she reached you, inspired you, or simply made you smile. Thank-you for sharing this with us. She does this for us and so much more. </div><div><br></div><div>We would also like to thank the many people who have been making sure we are well fed. We are overwhelmed in the best way by your kindness. We wish we could thank you all in person and hopefully one day we can. Please know that we are so grateful for this support. </div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Thank-you to Dave and the staff at the Empire Grill for generously hosting Phoebe's reception. </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Thank-you to Kinki for making Phoebe's favourite sushi, to Uncle Scot for making all of Phoebe's other favourites, to the Frasers of Fraser's Cafe for the beautiful and delicious food, and to Jacobsens and Wolf and Ada's for contributing delicious deserts. Thank-you to Sue Krueger for the beautiful and perfect flowers and arrangement for Phoebe. We know our foodie Phoebe would have loved all of this. Thank-you to family and friends for helping to organize everything and basically holding us together. </span></div><div><br></div><div>We are taking things one day at a time - missing our sweet Phoebe so much. In the spirit of Phoebe and following her lead we laugh as often as we can and we do our best. We take nothing for granted. In memory of Phoebe we will continue to shout it from the rooftops for children with cancer - our shout may be more of a whimper at first, but we hope our voices will be heard. We know Phoebe would want us to make this okay. </div><div><br></div><div>We love you Phoebe Rose. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCaZU4OVOSCtNISZnXvplXVMVZPTsw2J_wXLa7EAM97ACjsEq_tUZYygyltxre2tvw1tmRaS_Ovz0eDX95PvYftxZ1nOT9eKLttvZo96wZiBlPfhnm7Uvfgbvl8XNYqXhmw0w720l3N9o/s640/blogger-image-738128330.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCaZU4OVOSCtNISZnXvplXVMVZPTsw2J_wXLa7EAM97ACjsEq_tUZYygyltxre2tvw1tmRaS_Ovz0eDX95PvYftxZ1nOT9eKLttvZo96wZiBlPfhnm7Uvfgbvl8XNYqXhmw0w720l3N9o/s640/blogger-image-738128330.jpg"></a></div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com5tag:blogger.com,1999:blog-1653852923429363960.post-41271365875330999362015-11-24T19:31:00.001-08:002015-11-24T20:06:27.514-08:00Phoebe's obituary - something I never imagined I would ever write. In fact, most of the things we have been doing lately are things no parent should ever have to do. Each day we wake up without our sweet Phoebe is harder than the last. We miss her so much.<div><br></div><div>Please see the link below for Phoebe's obituary and details on how to make a donation to infant leukemia research at St.Jude in her memory. </div><div><br></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">http://beechwood.permavita.com/m/PhoebeRoseDoull-Hoffman</span></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com5tag:blogger.com,1999:blog-1653852923429363960.post-72102848172343532982015-11-20T16:53:00.001-08:002015-11-20T18:10:59.362-08:00Celebration of Life<div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We are very touched by the many messages and comments we have received - it is wonderful to know how loved our sweet Phoebe is. And how she touched your lives. We wish we could respond to each of you and thank you personally. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It's so hard to believe that Phoebe is gone and we just miss her so much. I miss her little voice telling us all what to do. I miss holding her. I miss her joy. I miss everything about her. I keep thinking I am going to wake up from this nightmare, but instead I just feel lost. We all do. Mae cries for her sister and best friend and it breaks my heart. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We are leaving Memphis tomorrow after 16 months away from home. We wish so much that things were different and our Phoebe was coming with us - healthy and with the cure she so deserved. Instead she is coming home with us so we can put her to rest. We miss her so much. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">The celebration of Phoebe's life will be held on Sunday November 29th at the Beechwood Funeral Home, located at 280 Beechwood Avenue in Ottawa. We will update soon with more details. </span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;">A special thank-you to Ella Berman for writing and singing this beautiful song for Phoebe. I know that Phoebe would have loved this and when I close my eyes I imagine her singing along. https://m.youtube.com/watch?feature=youtu.be&v=1OAhx2alPXc</span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1K2U2FbrJGmlCC86PVcw_QjPLRwPgHCUsGQrqw8SCZmyQwzjO_QTz0c-RddgSR_BcgMWqD4lIbidqIA2AGaH_PJyj5lyVOl8aKRjNdzYyU_44fsLaVGmVZChHpek9zRfctTZ92P5CWcc/s640/blogger-image--1294725752.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1K2U2FbrJGmlCC86PVcw_QjPLRwPgHCUsGQrqw8SCZmyQwzjO_QTz0c-RddgSR_BcgMWqD4lIbidqIA2AGaH_PJyj5lyVOl8aKRjNdzYyU_44fsLaVGmVZChHpek9zRfctTZ92P5CWcc/s640/blogger-image--1294725752.jpg"></a></div><br></span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><span style="-webkit-text-size-adjust: auto;"><br></span></div><div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com8tag:blogger.com,1999:blog-1653852923429363960.post-43900429716361123832015-11-18T13:06:00.001-08:002015-11-18T13:06:05.876-08:00<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Our sweet Phoebe Rose took her last breath this morning in the ICU at St.Jude. We never made it home with her, but in many ways her beautiful spirit will always be home with us. We are broken, so broken, and just miss her so much. We Love you Phoebe Rose.</span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZXgC5mjrSZ3hYCBHRawtmSXz4G1-PK_kgn-bkQFmys-fPpvPkWadRkI5tNhXQiV-77j2qRK0r0Bav7oI5ewB40IFof5kfnRN53UNfABoS8iu588ZvHtJcqS3MgN6x6zmuZsjWzamtWuQ/s640/blogger-image-387928755.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZXgC5mjrSZ3hYCBHRawtmSXz4G1-PK_kgn-bkQFmys-fPpvPkWadRkI5tNhXQiV-77j2qRK0r0Bav7oI5ewB40IFof5kfnRN53UNfABoS8iu588ZvHtJcqS3MgN6x6zmuZsjWzamtWuQ/s640/blogger-image-387928755.jpg"></a></div><br></span></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com25tag:blogger.com,1999:blog-1653852923429363960.post-79641005165791100362015-11-16T15:31:00.001-08:002015-11-16T17:11:31.317-08:00HomeWe are making plans to come home and are transferring care to CHEO's ICU. Phoebe is very sick with infections, but we hope and plan, as long as it will help Phoebe, to continue treatment for these at home. There is no cure for refractory infantile leukemia and we have tried every single thing we can. <div><br></div><div>St.Jude, being the incredible and wonderful place that it is, is going to great lengths to get Phoebe home to Ottawa. I don't know if this would be possible anywhere else. They are arranging a medical transport flight, and because of the extenuating circumstances, they may allow both Jon and I to travel with Phoebe. We could be leaving as early as tomorrow. </div><div><br></div><div>The people who have cared for Phoebe throughout this journey are some of the most beautiful people I have ever met. They have done so much to help Phoebe, but also to help our family, and even though we are going home without the cure we so hoped for, we will always be grateful for this beautiful place and their mission. St.Jude has given us time and will always hold a special place in our hearts. </div><div><br></div><div>We are still hopeful, but our hope has changed. With everything we have, we hoped for a forever cure and to bring home a healthy child, but now we hope for time. We hope for healing. We hope for smiles, good days, and strength - for Phoebe and all of us. We hope Mae and Phoebe understand. </div><div><br></div><div>Phoebe is still sick with many infections, she is requiring high flow oxygen to help her breathe, but each day she spends some time playing, watching movies, and telling us all what to do. At Phoebe's request, we have started playing freeze dance at least once a day. Phoebe plays and pauses the music, we dance, and she smiles. I would do anything for that smile.</div><div><br></div><div>We are devastated. There are no words that even come close to expressing how painful and heart shattering this is. How hard it is to watch Phoebe suffer and fight to breathe as we have been doing. We wish things were different. We wish there was something, anything, we could do that would guarantee healing and we will continue to do all that we can. All that we can right now means bringing Phoebe home where she can be surrounded by love. It means holding her, loving her and supporting her through whatever may come. We just love her so much. </div><div><br></div><div>Thank-you all for loving and praying for Phoebe. Please pray for a safe journey home and keep our sweet girl in your thoughts. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyw986dd2UyZYZEFZ88hU-k45EtmpXuIB8H-pRdIDeMHvqdLW7vf0ay4vtaftZGyzmxYYZhQkwZ-QzE3hpPxxcMZzmJqScujDuguWFcaPfWU1-oqXsIE2ehf3VNeDv5RbWKq4PFbfEGUc/s640/blogger-image--4484013.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyw986dd2UyZYZEFZ88hU-k45EtmpXuIB8H-pRdIDeMHvqdLW7vf0ay4vtaftZGyzmxYYZhQkwZ-QzE3hpPxxcMZzmJqScujDuguWFcaPfWU1-oqXsIE2ehf3VNeDv5RbWKq4PFbfEGUc/s640/blogger-image--4484013.jpg"></a></div><br></div><div><br></div><div><br></div><div><div><br></div><div><br></div></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com15tag:blogger.com,1999:blog-1653852923429363960.post-13326400417602594252015-11-15T05:18:00.001-08:002015-11-15T21:43:26.658-08:00<p style="margin: 0px 0px 6px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Saturday, November 14th </span></p><p style="margin: 0px 0px 6px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></p><p style="margin: 0px 0px 6px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Thank-you all for the love and prayers and messages of support - I believe Phoebe can feel the love and that means the world to me. I was going to wait to update because things are so unpredictable, but I know that you love and worry about Phoebe too.</span></p><p style="margin: 0px 0px 6px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Last night was so hard and very little sleep was had. We spent the night trying to help Phoebe breathe better. Listening to her grunt and struggle and try to get comfortable. She was placed on high flow oxygen via a nasal cannula - this took some convincing and negotiating as she didn't want something in her nose, but she finally agreed. It took some time for her to settle and today has been very up and down, but overall her breathing has improved although it is still fast. Her heart rate and blood pressure have come down (both were high), and she has managed to maintain her oxygen saturation - although it's at a high setting.</span></p><p style="margin: 0px 0px 6px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The colitis appears to be a bit better and Phoebe's belly is less distended, but her pancreatic enzymes are more elevated today. We hope they show some improvement tomorrow.</span></p><p style="margin: 0px 0px 6px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">There are blasts in Phoebe's blood, but the doctors are not convinced it is disease progression. They think that her body could be in shock and her bone marrow could be producing everything and anything it can. Right now leukemia is probably the farthest thing on our mind - there are just too many life threatening issues at play.</span></p><p style="margin: 0px; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We are clinging to hope. Phoebe is more comfortable. She slept most of the day, but when she was up she played on the iPad with Mae. She hasn't played with Mae in weeks and her big sister really needed this. We are grateful for each day, each smile, each tiny victory, every moment.</span></p>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com1tag:blogger.com,1999:blog-1653852923429363960.post-3257557518938490862015-11-13T22:17:00.001-08:002015-11-14T01:59:15.126-08:00<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Phoebe had a very hard day today. We all did. On top of everything, she also has pancreatitis and colitis. Her belly is very swollen and it's affecting her breathing - making her work very hard, too hard, to breathe. It is all just too much. We had some very difficult talks in the ICU tonight and there really aren't any words to describe this. Our hearts are breaking and we are clinging with all that we have to hope. Even if it is just hope for relief for our sweet girl. We need prayers, all of your positive energy, and love.</span>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com10tag:blogger.com,1999:blog-1653852923429363960.post-38672223306188379672015-11-12T15:18:00.001-08:002015-11-12T22:42:29.010-08:00ICUPhoebe is in the ICU. We have been here since Tuesday afternoon when she started having difficulty breathing. The rapid response team was called and within minutes, Phoebe's room on the leukemia ward was full of people trying to help. I can't say enough about the amazing people who work here.<div><br></div><div>The ICU doctors told us Phoebe was in respiratory failure and once we arrived in the ICU they quickly put her on a biPAP machine to help her breathing. The mask covered her entire face and she screamed at us to help her. We stood by completely helpless, only able to offer our voices to comfort her. When we tried to explain that the mask will help and it will be okay, she screamed "it's not okay". That is Phoebe's standard reply to "it will be okay", and she's right. None of this is okay. </div><div><br></div><div>Thankfully her breathing improved with the help of steroids and the biPAP machine - she tolerated it for about ten hours before she pulled it off her face and demanded she get a break. She is still requiring oxygen all the time via a regular mask and she recently tested positive for adenovirus in her blood, stool, and sinuses - it is also probably in her lungs.<div><br></div><div>The best and really the only way to completely get rid of any virus is with an immune system, something Phoebe doesn't have. There is a drug available to treat adenovirus, but it is very toxic and hard on the kidneys. We were hoping to use an investigational drug, but it is only available on a compassionate care basis to kids who are unable to receive the first - for example if their kidneys are failing. We are trying all we can to get the less toxic investigational drug, but because it would take at least a week even if it were available and Phoebe is very sick with adenovirus now, we are giving one dose of the available drug, holding our breath, and hoping it helps. </div><div><br></div><div>There are so many obstacles and challenges for Phoebe to overcome that it is overwhelming and really just devastating. Each time we move forward, we take a step back. Phoebe is strong and brave and she fights so hard, but she is also five years old and deserves so much more than this. Despite all that is going on, when Phoebe isn't telling her nurses and doctors exactly what she thinks - she smiles. She laughs at her Daddy's jokes, she paints and does crafts. She listens to her favourite music and reminds Mae to do her homework. She keeps all of us on our toes and reminds us what is important. </div><div><br></div><div>We are holding on and hopeful for brighter days. We hope to get out of the ICU. We hope to get out of the hospital. We hope for a better quality of life for Phoebe, and we pray for healing and relief from all of this. One day at a time. </div><div><br></div><div>One thing is for certain, Phoebe can feel the love and prayers and this brings us so much comfort. Thank-you all for keeping Phoebe in your thoughts and prayers and for the beautiful messages of love and support. </div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div></div><div><br></div>Jennyhttp://www.blogger.com/profile/07250735803201148799noreply@blogger.com3