tag:blogger.com,1999:blog-29291565019256385652024-03-13T13:43:14.537-07:00Our Little HazelnutThe Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.comBlogger139125tag:blogger.com,1999:blog-2929156501925638565.post-40730392452259812722020-03-30T23:00:00.000-07:002020-03-30T23:00:02.247-07:00Two Years Later...<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">Two years. </span></div>
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<span style="font-family: Verdana, sans-serif;">It has been two long years since my daughter took her last breath in my arms.</span></div>
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<span style="font-family: Verdana, sans-serif;">Two years since I held those beautiful hands.</span></div>
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<span style="font-family: Verdana, sans-serif;">Two years since I smelled her stinky chemo breath.</span></div>
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<span style="font-family: Verdana, sans-serif;">Two years since her laugh echoed through the house.</span></div>
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<span style="font-family: Verdana, sans-serif;">Two years since I got to hear her say, "I love you, Mommy."</span></div>
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<span style="font-family: Verdana, sans-serif;">It was early in the morning on March 30, 2018––Good Friday––when I knew my daughter, Hazel's, time on this earth was coming to an end. </span></div>
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<span style="font-family: Verdana, sans-serif;">She was fighting neuroblastoma––a tumor based cancer that affects a child's sympathetic nervous system and is found in about 700 children every year in the US––for the third time.</span></div>
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<span style="font-family: Verdana, sans-serif;">There is currently no known cure for relapsed neuroblastoma, but that didn't stop us from fighting. Hazel had already beat relapsed neuroblastoma once, and she was gearing up to start a new and promising clinical trial.</span></div>
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<span style="font-family: Verdana, sans-serif;">Her spirits were up, despite the constant pain from her tumor and she was ready to fight. </span></div>
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<span style="font-family: Verdana, sans-serif;">She was ready to try the next treatment in hopes of a normal childhood.</span></div>
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<span style="font-family: Verdana, sans-serif;">Although, finding Hazel filled with hope wasn't unusual.</span></div>
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<span style="font-family: Verdana, sans-serif;">She had a way about her. She made us all believe in something bigger than ourselves and helped remind us what was important in life––love, laughter and hope.</span></div>
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<span style="font-family: Verdana, sans-serif;">She had scans scheduled for the first week of April. Frequent disease evaluation is critical when treating children with aggressive cancers. </span></div>
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<span style="font-family: Verdana, sans-serif;">She was tired, but not any more tired than usual.</span></div>
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<span style="font-family: Verdana, sans-serif;">And she had a cough. A cough that just wouldn't quit.</span></div>
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<span style="font-family: Verdana, sans-serif;">And one day in late March, just a week before her scans, Hazel spiked a fever––which in the childhood cancer world means automatic hospital admission.</span></div>
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<span style="font-family: Verdana, sans-serif;">We arrived on Monday, with an X-Ray determining Hazel's cough had developed into pneumonia. </span></div>
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<span style="font-family: Verdana, sans-serif;">Pneumonia made me nervous, as it could be lethal for an immunocompromised kid, but Hazel's white blood cell counts were up and I knew that she could likely fight the infection.</span></div>
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<span style="font-family: Verdana, sans-serif;">On Tuesday, her oxygen levels were improving. The doctors believed the antibiotics must have been working and that we should be back home by the end of the week.</span></div>
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<span style="font-family: Verdana, sans-serif;">But even though her stats were improving, her pain was unrelenting and getting worse.</span></div>
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<span style="font-family: Verdana, sans-serif;">Hazel's oncologist wanted to take advantage of the upcoming scans and decided to move them up to get a better look at what was going on. </span></div>
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<span style="font-family: Verdana, sans-serif;">Late Tuesday night, when the hospital was still, Hazel lay in her hospital bed and was rolled down to the CT machine. </span></div>
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<span style="font-family: Verdana, sans-serif;">Lifting her onto the exam table was a struggle. </span></div>
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<span style="font-family: Verdana, sans-serif;">Not only was it painful for her, but she was connected to countless wires and tubes––a common sight for childhood cancer fighters, but still cumbersome.</span></div>
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<span style="font-family: Verdana, sans-serif;">Wednesday morning, Hazel's oncologist called and asked for my husband to come to the hospital to go over the results of the scan.</span></div>
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<span style="font-family: Verdana, sans-serif;">We knew this meant bad news, but we weren't giving up the fight.</span></div>
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<span style="font-family: Verdana, sans-serif;">Not yet.</span></div>
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<span style="font-family: Verdana, sans-serif;"><br />Not now.</span></div>
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<span style="font-family: Verdana, sans-serif;">Not after five years of fighting.</span></div>
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<span style="font-family: Verdana, sans-serif;">And last scan showed we still had time.</span></div>
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<span style="font-family: Verdana, sans-serif;">What her doctor told us in the family meeting room that day was something I wasn't prepared for.</span></div>
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<span style="font-family: Verdana, sans-serif;">No matter how many statistics you know––no matter how many children you watch lose their lives––no matter how much suffering you see your own child go through––nothing prepares you for the words that followed:</span></div>
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<span style="font-family: Verdana, sans-serif;"><br /><i>"Hazel's lungs are not affected with pneumonia. What the X-Ray showed as infection is, in fact, extensive disease. Her tumors have grown and are consuming her lungs. It is beyond what is treatable and there is nothing left for us to do. We are so so sorry."</i></span></div>
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<span style="font-family: Verdana, sans-serif;">The feeling of desperation, overwhelming grief and powerlessness is something I wouldn't wish on even the worst of humanity.</span></div>
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<span style="font-family: Verdana, sans-serif;">I asked how long we would have left with our girl, and the doctor told us we had "about a week, maybe two."</span></div>
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<span style="font-family: Verdana, sans-serif;">But it was Friday, only two days later, that Hazel was gone.</span></div>
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<span style="font-family: Verdana, sans-serif;">Hazel spent her last two days with her pain better managed than ever before, surrounded by family, friends and all of the staff at the hospital who grew to love our daughter during her fiver year battle.</span></div>
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<span style="font-family: Verdana, sans-serif;">She was groggy but awake––talking and laughing.</span></div>
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<span style="font-family: Verdana, sans-serif;">She kept saying, "I don't want to sleep because I don't want to miss the party."</span></div>
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<span style="font-family: Verdana, sans-serif;">We decided only to tell Hazel what she wanted to know. We didn't want her last days spent in fear. If she had questions, we would answer them, but we did not spell out everything for her. We thought we had more time to figure it out.</span></div>
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<span style="font-family: Verdana, sans-serif;">What we did do was make sure to let Hazel know that if she was done fighting, it was okay. Okay, not only to be done fighting, but okay to finally rest.</span></div>
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<span style="font-family: Verdana, sans-serif;">What transpired over those two days taught me more about life and death than anything I had ever experienced before...or since.</span></div>
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<span style="font-family: Verdana, sans-serif;">Hazel drifted in and out of sleep, talking to us every step of the way. </span></div>
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<span style="font-family: Verdana, sans-serif;">She spoke of butterflies, puppies and kittens. She even spoke of a dog lost long ago to cancer.</span></div>
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<span style="font-family: Verdana, sans-serif;">She sang songs of her own creation that seemed to come from the very depths of her soul.</span></div>
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<span style="font-family: Verdana, sans-serif;">She told everyone: "Daddy needs lessons in listening!" "I'm Hazel the hater. I hate all of this going on!" "The butterfly came back to us because it missed us, but now it's home where it belongs."</span></div>
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<span style="font-family: Verdana, sans-serif;">Throughout the night on Thursday, Hazel's lungs were working harder and harder. She held her oxygen tube close to her face for comfort. Each cough made her more and more tired.</span></div>
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<span style="font-family: Verdana, sans-serif;">At 5:00 in the morning, her oxygen levels had dropped and were showing no signs of recovering. We called our immediate family, and they were at our sides with our other children within an hour.</span></div>
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<span style="font-family: Verdana, sans-serif;">Our home hospital, Children's Hospital Los Angeles, was understanding, supportive and loving during this time. The staff had brought in an extra bed so Hazel could be cuddled by her siblings and parents, all at once. </span></div>
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<span style="font-family: Verdana, sans-serif;">By six in the morning, it was quiet and still. Hazel finally found some peaceful sleep and we all slept beside her for the next hour. </span></div>
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<span style="font-family: Verdana, sans-serif;">It was beautiful.</span></div>
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<span style="font-family: Verdana, sans-serif;">Around 7:40 Friday morning, Hazel's siblings were all down in the cafeteria eating breakfast, and it was becoming clearer that she had mere moments left.</span></div>
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<span style="font-family: Verdana, sans-serif;">We called for them, asking if they wanted to be in the room to say goodbye. As hard as that decision was, each and every one of them said yes. </span></div>
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<span style="font-family: Verdana, sans-serif;">Hazel rested in my arms as her brothers and sister told her how much they loved her and that they would never forget her.</span></div>
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<span style="font-family: Verdana, sans-serif;">She heaved a heavy breath and with her eyes closed, her body relaxed and her hands holding her Daddy's, she said, "Wait, am I dying?"</span></div>
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<span style="font-family: Verdana, sans-serif;">I said, "Yes, sweetie. You are."</span></div>
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<span style="font-family: Verdana, sans-serif;">She replied, "I'm a little scared."</span></div>
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<span style="font-family: Verdana, sans-serif;">Aaron said, "It's okay, Hazelnut. Just know that God is right there waiting for you."</span></div>
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<span style="font-family: Verdana, sans-serif;">And I said, "Yes, and we are all right here with you. We love you and you will be okay and cancer-free."</span></div>
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<span style="font-family: Verdana, sans-serif;">She slowly smiled, took her last breath and said, "Byyyyyeeee."</span></div>
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<span style="font-family: Verdana, sans-serif;">With that goodbye, her heart stopped, her lungs stopped taking in air, and our Hazel slipped to the other side of eternity.</span></div>
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<span style="font-family: Verdana, sans-serif;">Even writing this words today, I am trembling with tears filling my eyes.</span></div>
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<span style="font-family: Verdana, sans-serif;">No seven-year-old should have to face this moment.</span></div>
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<span style="font-family: Verdana, sans-serif;">She deserved to live.</span></div>
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<span style="font-family: Verdana, sans-serif;">But she also deserved a life without fear, without chemo and pokes, without cancer.</span></div>
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<span style="font-family: Verdana, sans-serif;">And she has that now. She will never be touched by the monster we call neuroblastoma again.</span></div>
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<span style="font-family: Verdana, sans-serif;">Although two years have passed, Hazel's last days are as clear to me today as the day they happened. </span></div>
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<span style="font-family: Verdana, sans-serif;">The pain of losing her is just as great.</span></div>
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<span style="font-family: Verdana, sans-serif;">The amount I miss her has only grown.</span></div>
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<span style="font-family: Verdana, sans-serif;">I struggle with bitterness and confusion every single day.</span></div>
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<span style="font-family: Verdana, sans-serif;">Half the time, it is hard for me to even believe she existed in the first place.</span></div>
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<span style="font-family: Verdana, sans-serif;">Her absence is just so great.</span></div>
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<span style="font-family: Verdana, sans-serif;">But somehow, with each passing day, I am coping. I am growing. I am living.</span></div>
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<span style="font-family: Verdana, sans-serif;">I am trying to hold fast to the signs that abound and to the beauty that life still has to offer.</span></div>
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<span style="font-family: Verdana, sans-serif;">Just as I did during Hazel's treatment, I am learning so much from her––in ways I never even knew possible.</span></div>
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<span style="font-family: Verdana, sans-serif;">My hope and my prayer is that these lessons will take root in my soul and keep me close to her––reminding me that she is not gone, but waiting for me. </span></div>
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<br />The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com0tag:blogger.com,1999:blog-2929156501925638565.post-58108211917492164732018-04-02T16:56:00.000-07:002018-04-02T16:56:03.262-07:00Our Little Hazelnut<div class="" style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 19px;">
<span class="" style="font-family: -apple-system-font; line-height: 16px;">It has been an incredibly difficult past few days for the Hammersley’s. Lauren is taking some much needed rest so this post is written by Lauren’s friend, Megan. For those of you not on social media Lauren wanted to make sure you were all updated on what has happened these past couple days. You have all been faithfully praying and supporting the Hammersley’s over the past 5 years and we are all so thankful for you.</span><br class="" style="font-family: -apple-system-font; line-height: 16px;" /><br class="" style="font-family: -apple-system-font; line-height: 16px;" /><span class="" style="font-family: -apple-system-font; line-height: 16px;"><a dir="ltr" href="x-apple-data-detectors://0" style="-webkit-text-decoration-color: rgba(0, 0, 0, 0.258824); color: black;" x-apple-data-detectors-result="0" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">Friday morning</a>, our sweet Hazel went to be with Jesus. What we thought was pneumonia, was just extensive disease progression, consuming Hazel’s entire left lung and other parts of her body. She was surrounded by her family and siblings and passed peacefully holding her daddy’s hand and resting in her mama’s loving arms. Hazel was either resting quietly, answering questions appropriately or talking of kitties and butterflies right up until the end. When she was ready, she spoke her last word of “good-bye” then she was gone. Her body was tired from 5 years of fighting, but her spirit stayed strong till the end. Hazel has been so abundantly loved and has been such a source of inspiration to all of us. Aren’t we all better because of her?? We are all trying to fumble our way through the days without her. It will take time. Hazel had a tribe of warriors surrounding her and we all feel a deep sense of loss. We selfishly wish she could still be here with us, but know without a doubt she is pain free and full of joy in Jesus’ loving arms. She fought her battle well. No more chemo, no more surgery, no more fevers, no more hospital stays. Enjoy the well deserved rest, sweet Hazel❤️</span><br class="" style="font-family: -apple-system-font; line-height: 16px;" /><br class="" style="font-family: -apple-system-font; line-height: 16px;" /><span class="" style="font-family: -apple-system-font; line-height: 16px;">Even though it has been a long battle the end came so suddenly that we all feel unsure of what to do or how to help. I love that compassion is so natural for all of us, isn’t it? We all see when there is a need, a deep void, and we all have a desire to help fill it and attempt to make it better. If you didn’t you wouldn’t have been following Hazel’s journey this long. The Bible says that our God is a God of compassion and the God of all comfort. We are all made in His image so it’s fitting that we all want to help❤️ For now, please consider donating to Hazel’s fund at: </span><a class="" href="http://www.bumblebeefoundation.org/neuroblastoma-relapse-bees.html" style="font-family: -apple-system-font; line-height: 16px;">http://www.bumblebeefoundation.org/neuroblastoma-relapse-bees.html</a><br class="" style="font-family: -apple-system-font; line-height: 16px;" /><span class="" style="font-family: -apple-system-font; line-height: 16px;">I’m sure more needs will arise, but right now is a time to be still. To grieve. To remember the good times. To begin to heal. Please continue to pray for Aaron and Lauren as they process the loss of their daughter. They have difficult decisions to make and a life to face without Hazel. They will be experiencing a very new and foreign sense of normalcy in their lives in the days to come and it will take time to adjust. I can only imagine how difficult it will all be. Please pray for Micah, Elizabeth, Jonah and Zoey as they process the loss of their sister. They have been incredibly resilient and God has definitely been comforting them in His sweet ways, but I know the road to healing won’t be easy. Thank you again for your love, your support, and your prayers. I know they could not have gone through the last 5 years without every single one of you. Let’s continue to love on the Hammersley’s and lift them up in this difficult time. ❤️</span></div>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com10tag:blogger.com,1999:blog-2929156501925638565.post-23896899120991262222018-03-26T17:07:00.002-07:002018-03-26T21:42:34.225-07:00Reality and Hope<div style="text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><b>IF YOU WANT TO HELP OUR FAMILY, GO TO WWW.HERETOSERVE.ORG, CLICK "JOIN", AND FILL OUT THE REGISTRATION FORM TO JOIN HAZEL'S CARE COMMUNITY. WE HAVE AN AMAZON WISHLIST, A CALENDAR FOR HELP AT HOME, AND A LIST OF WAYS TO HELP</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"> I know I have been a bit MIA from the blog, in favor of posting updates on Instagram and Facebook, because it was easier. But I knew that many of the army of people praying for and supporting our daughter only get their updates through this blog, I knew I would need to consolidate everything that has happened recently.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> If you haven't seen my Live Video on Facebook, I would encourage you to check it out if you can. I recorded it during a time where I couldn't really wrap my mind around what was going on, and I think it turned out to be a really effective way for you to see my heart. Writing, while effective in communicating information, doesn't always convey how emotional this childhood cancer journey can be for a parent.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> For those of you who can't watch the video, here is a brief update:</span><br />
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<span style="font-family: "verdana" , sans-serif;"> My last posts before the video had detailed how Hazel was recovering from some difficult treatment for her relapse. Despite the harsh side effects, Hazel recovered well, and she had a set of scans that showed incredible improvement. The tumors shrank by 30-40%. We were finally feeling hopeful! She was feeling so good and was enjoying being home and being our little Hazelnut!</span><br />
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<span style="font-family: "verdana" , sans-serif;"> Just a couple of days before Hazel was set to start the next round, I noticed that she was not acting quite like herself. She was run down, couldn't get comfortable in bed, and just all around feeling "icky". However, she wasn't in the extreme amounts of pain she had been in the past, so I tried to silence my anxieties and chalk them up to cancer parent paranoia (it's a very real thing).</span><br />
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<span style="font-family: "verdana" , sans-serif;"> But come Monday morning, before I headed to the hospital, my gut kept telling me I needed to call the doctor. And it was God who spurred on my "mother's intuition" back in 2013 that led to Hazel's initial diagnosis. So I called her oncologist, and said, "Hazel is just not herself, and I'm not entirely confident that she should start the next round of chemo. I think we should move her scan from next week to this week instead."</span><br />
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<span style="font-family: "verdana" , sans-serif;"> After a few questions, Dr. Marachelian agreed with my assessment, and they scheduled an emergency CT for that afternoon. Hazel was asleep in the stroller when I got the text from her doctor:</span><br />
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<span style="font-family: "verdana" , sans-serif;"> My heart was in my throat, and I called Aaron to rush over to meet me at the hospital. I pushed Hazel's stroller and got to clinic in record time. Thankfully Aaron had made it to the room before Dr. Marachelian arrived, because the news we had coming needed to be heard together.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> The scan, which was on March 5th, showed that although the two major tumors we have been watching were still stable, there was an abundance of new disease. The doctor noted at least 5 lymph nodes that were now affected with cancer, and possibly more that we just couldn't see. It was clear that Hazel's cancer had, once again, figured out away to resist the current treatment we were on and we were to stop immediately. Dr. Marachelian was visibly worried, and Aaron and I were just broken. She wanted to get a a PET Scan, because it would give us a clearer picture of what was going on. Her concern was that it was going to be more involved than what the CT was showing, and if it was, we may not have a lot at our disposal to try and treat it.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Aaron and I spent those next few days in a state of shock. I cried myself to sleep every night. My brain was making plans. Plans that I did not want to make, but were happening anyway....</span></div>
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<span style="font-family: "verdana" , sans-serif;"> We were home only for a half a day though, when Hazel spiked a fever and we ended up inpatient at the hospital. By the end of the week, Hazel's pain was increasing and her well-being was decreasing. So we ran the scans and a few other tests while we were there. We got the news that the PET/CT was actually NOT worse than the CT. It looked exactly the same! Of course, this wasn't news that an average person would categorize as "good", but when all you have been given is bad news after bad news, a scan like this does become good news.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> I was thinking that it was a real possibility that Hazel wasn't going to make it out of the hospital that week. I was almost certain we were going to have to say goodbye soon. And let me tell you, I do not wish that thought process on anyone. It is debilitating. And 7 families are going through that goodbye every single day! SEVEN FAMILIES!</span></div>
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<span style="font-family: "verdana" , sans-serif;"> Thankfully, we were able to manage all of Hazel's symptoms with oral medications and our supplemental/natural care, that we were able to go home by that weekend. Dr. Marachelian wanted us to come see her on Monday, so we could discuss a plan for Hazel. She wanted us to have very real conversations over the weekend though, to make sure we were on the same page, regarding Hazel's future care.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> When we met together on the 12th, we had all come to the same decision that we were not ready to stop trying to fight this thing. We all believed that there could still be something out there that could work for Hazel. However, we also got news that the cancer has begun to spread to Hazel's bone marrow. It is only affected at 5%, so it is not much, but since she has not had bone marrow involvement at all, for the past five years, this was very disappointing news. This cancer is moving fast, getting stronger and getting smarter. And research is just not happening fast enough! It has become very clear, that a cure may not happen for Hazel. Researchers and doctors are working so hard to find the most targeted, individualized therapies, but the money, the awareness and the governmental support is just not there! I am so glad we are fighting to keep our kids safe at school, but I wish people would fight just as hard to keep our kids safe from cancer. IT IS KILLING OUR CHILDREN AT A MUCH HIGHER RATE!</span></div>
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<span style="font-family: "verdana" , sans-serif;"> But even with this disappointing news, and knowing the reality of this beast, we still agreed we were not throwing in the towel and were going to hang onto hope. So we began to go through all of the possible treatments we could try. We decided that right now, Hazel's body is just not well enough to do high dose chemo treatments, however, we also felt like her body was strong enough to handle some chemo. So the ICE protocol that we were thinking of doing before was out. There were clinical trials that consisted of high dose chemo, paired with a study drug, so those were out. There were clinical trial that consisted of only a study drug. But we didn't feel like that would be enough at this point. If there was nothing else to help Hazel, we could try those in a last-ditch effort, but we weren't there yet. So that left us with clinical trials that had a lower dose chemo, paired with a study drug.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> So we all came down to one decision. A trial that included and oral chemo called Ironetecan, paired with a new drug that targets something called the N-MYC amplification. The N-MYC gene is responsible for replicating cells, and when a child with Neuroblastoma has an amplification of that gene, their cells get replicated faster than the average person. As you can imagine, that is not good when those cells are cancer cells. We have known that Hazel has had this amplification since diagnosis, but it wasn't until recently that there have been targeted therapies for this.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> We had to run a few more tests, and sign a bunch of papers, before starting the trial, but Hazel was able to begin on March 16th. The good thing, is that she was able to do all of the treatment from home. The tough thing, was that it was all oral. The chemo was a concoction of liquid, in a syringe, and the study drug was 5 different pills! But she did it all like a champ, and finished this past Tuesday. We aren't confident that this is the key, but we are hopeful that it could work for Hazel. But what we really need is a miracle! I know that God is capable, so I am asking, in faith, for you all to pray for nothing less! The plan is to re-scan on Monday, April 2nd. The day after Easter. Wouldn't it be amazing to witness a miracle after celebrating the miracle of Jesus' resurrection?!</span></div>
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<span style="font-family: "verdana" , sans-serif;"> This treatment is not expected to drop Hazel's counts as much, and the side effects should be minimal. However, over the course of the past couple of weeks, Hazel still has not been feeling well. Her pain keeps coming and going, she is very run down, she has not been up to eating much, and has had a cough that hasn't quit. As you may remember, Hazel's left lung has been struggling with fluid build up because of the placement of her tumors, and now, some of the lymph nodes that have appeared are also around this lung, so we have been very careful about keeping a watch on this.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> Over this past weekend, Hazel's cough seemed to get a little worse, and she spiked a fever. I was not in town, so my mother (an angel on earth), took Hazel to the emergency room. She was admitted to CHLA at 4:30AM Sunday morning, and it has been discovered that her cough has now turned to pneumonia. Pneumonia in cancer kids can be very dangerous, especially when immunocompromised. However, Hazel's immune system is actually in high gear! Her white blood cell count has not really been affected by the chemo, and they are actually in overdrive, which means her body is trying to naturally fight this thing. So still a precarious situation, it is comforting to know that her body is fighting with us.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> We have no idea how long we will be inpatient, or how long it will take to treat this pneumonia, or what it will entail, so please pray for an easy recovery. She is exhausted and doesn't feel very well at all, so I am hoping that what we are doing will work fast. We may end up moving the scans up to this week, but I won't know that until I speak to Hazel's oncologist. If the scans reveal that the tumors are not responding, we have a few other things we can try. But if her cancer begins growing out of control, our options will begin to dwindle. Please keep praying! Pray that despite our realities, we can see and find the hope.</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">Hazel Today (she currently<br />needs oxygen support for<br />the pneumonia)</span></td></tr>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com18tag:blogger.com,1999:blog-2929156501925638565.post-39552854803253238482018-01-10T00:11:00.004-08:002018-01-10T00:11:38.796-08:00Progress <span style="font-family: Verdana, sans-serif;">The word <b>progress</b> has come to mean so many things to me over the past several months. Before cancer, <b>progress</b> always pointed to something positive; something good. But now, <b>progress </b>can sometimes be the last thing I want to hear.</span><br />
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<span style="font-family: Verdana, sans-serif;"> Since my last post here, a lot has happened. In November, Hazel was hospitalized with extreme amounts of pain, and several difficult side effects to what we determined to be a tumor flare. We were all just trying to hold on to get Hazel on a new clinical trial that we all believed had a very good chance at curing our little girl. </span><br />
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<span style="font-family: Verdana, sans-serif;"> Between our discharge, and the day before Christmas Eve, we thought we had it. Hazel was making such good <b>progress</b>, that I was even beginning to be filled with a hope once lost. I mean, she was in school everyday, eating like a champ, bursting with energy and gaining strength like you wouldn't believe (she crossed the monkey bars on her own for the first time!). It was a glorious month!</span><br />
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<span style="font-family: Verdana, sans-serif;"> Then on Christmas Eve, Hazel's back pain had returned as if someone just flipped a switch from "OFF" to "ON". And it <b>progressed</b> so quickly. I was terrified. But in true Hazelnut fashion, she was determined to be home for Christmas. Like any 6 year old, she had been counting down the days, not just for opening presents on Christmas morning, but to a day filled with spending time with family, since she missed out on so much the month before while being in the hospital. I spoke to her doctor, who realized how important this holiday could be for our family, and she said that we could give her some pain medication to hold her over until morning, but to come in as soon as we were done. She also said that if the pain got worse, or she had any other symptoms, to come in immediately. </span></div>
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<span style="font-family: Verdana, sans-serif;"> So I said to Hazel, "Honey, I will do whatever you want. If you want to stay here, and fight through the pain, I will go wherever I need to, to get you the pain medication you need. But the second you want to go to the hospital, you tell me." So she fought through the pain, barely being able to open her presents, but happy to visit with everyone. But by 3:00pm Christmas Day, we both agreed that it was time to go to the hospital.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Considering her experience in November, her doctors opted for a direct admission this time, rather than our usual ER visit, then admission. Continuous IV pain medication was started immediately, because at that point, my poor sweet girl could scarcely even move. Scans that were meant to be done after New Years, were pushed up, and even more intricate ones were ordered.</span></div>
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<span style="font-family: Verdana, sans-serif;"> As each day in that first week here passed, I felt like I was living my very own version of the movie "Groundhog Day". It was like we were re-living the same hospital stay we had in November. Hazel experienced the same symptoms, and the same protocol was initiated. Then, other complications began to come up, just as they had in November, and I was scared senseless that we were going to experience the same hell that we did then. Thankfully, everyone was aware of what happened last time, and we all worked very hard to try and keep ahead of everything.</span></div>
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<span style="font-family: Verdana, sans-serif;"> It took quite a few days to get a handle on managing Hazel's pain, but we certainly got to it more quickly than last time, so I was thankful. But the same fears I had two months ago, were eating away at me once again. I thought for sure, this time, the pain meant Hazel's cancer had <b>progressed. </b></span></div>
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<span style="font-family: Verdana, sans-serif;"> First, her CT results came in, and my fears were realized when the doctors told us that there has been <b>progression</b> in her tumors. But he tried to assure us, that so far, it had appeared to be small, and slow growing progression. But it looked as though this new <b>progression</b> was now threatening Hazel's spinal canal at an alarming rate, and they were concerned that if we did not stop it immediately, that the tumor growth could cause permanent neurological damage. So an MRI was ordered for that very night.</span></div>
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<span style="font-family: Verdana, sans-serif;"> The MRI came back with a very clear picture of <b>progress </b>of her tumors, and the one near her spine was now wrapping itself around the spine, trying desperately to break in, and even compressing several nerves between her T-11 and T-12 vertebrates. Thankfully, however, it has not yet invaded the canal (funny how bad news can become good news in this messed up world of childhood cancer), and she is currently not in danger of permanent damage. This gave us a chance to make a treatment plan, as it wasn't as emergent as we thought it would be.</span></div>
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<span style="font-family: Verdana, sans-serif;"> She also had the painful bone marrow biopsies performed as well, which thankfully came back clear. But this left her hips sore for many days.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Hazel's PET/CT came back, affirming the <b>progression</b>, and also lighting up very bright in her tumors, indicating that it is still very active disease. It also showed that because of their placement near her diaphragm and lungs, she was developing a pleural effusion (fluid build up around the lungs), just as she did in November. </span></div>
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<span style="font-family: Verdana, sans-serif;"> <i>Gosh, these tumors are greedy little suckers, aren't they?!</i></span></div>
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<span style="font-family: Verdana, sans-serif;"><i> </i>We tried to stay ahead of it, but it <b>progressed</b> rapidly, and before we knew it, her entire left lung was affected, and she needed to have around the clock oxygen for the better part of a day. So, instead of just watching it, and draining it if need be, our little Hazelnut had to have a chest tube placed, in addition to everything else she was going through.<i> </i>To date, it has drained nearly 700ml of fluid!</span></div>
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<span style="font-family: Verdana, sans-serif;"> After much discussion and deliberation, Hazel's oncologist and we decided on a treatment plan. Radiation was to be started as soon as possible, to try and stop the tumor around her spine in its tracks, and chemo was to be started immediately. Which chemo, though was the question. We had two choices, one was to go back to what worked for her last year (two types of chemo + the ALK inhibitor) and would be tough but tolerable on her body, or a protocol called ICE. ICE consists of three different chemotherapies (Ifosfamide, Carboplatin and Etoposide), which are all very strong and very brutal drugs. They are given inpatient, and you usually stay until you recover, because they need to watch your side effects very closely. I have known a few children who have done the protocol, and it was no picnic, so the thought of doing this scared me. But I also want this cancer gone, once and for all, and maybe that's what it would take.</span></div>
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<span style="font-family: Verdana, sans-serif;"> I wish the answer was easy. I wish, like many well-meaning people have messaged me, that cannabis, ketogenic diets, carrot juice, vitamin therapy, essential oils, etc. would be the cure to my daughter's cancer. Believe me, we have tried these things, with the hope for a cure! But her cancer keeps coming back. It keeps getting smarter, and stronger, and it has figured out ways to get around every single thing we have thrown at it. The possibility that this beast can take our daughter is becoming more real with every second that passes, and it rips my heart out that we haven't found the thing to save her yet.</span></div>
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<span style="font-family: Verdana, sans-serif;"> However, even with the knowledge that these protocols may not be the answer for Hazel, we do have hope that they can give us more time to try and find it. Her doctor and I both believe that the right protocol for now, is what got Hazel to remission last year. We both felt that if we tried the ICE protocol, and it hit Hazel to hard and caused irreversible side effects, it would not be fair to Hazel and we would never forgive ourselves for not trying the "easier" protocol first. So she started that regimen last week, and completed the 5 day course already. She seems to be tolerating pretty well for now, but her counts have dropped to nothing, and she has already needed blood and platelet transfusions. Her platelet level got so low, that she started getting a bloody nose yesterday, and we could not stop it for well over an hour. So much blood ended up in her stomach, that she coughed up clots three separate times.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Hazel also completes her 5 day course of radiation tomorrow. The radiologist has said that he has already seen a decrease in the swelling of her tumors, which has been reaffirmed to us these past couple of days, as Hazel's pain seems to be getting better. So much better, in fact, that she is off the continuous pain medications and on an oral nerve pain medication only. She felt good enough to even have an impromptu dance party with her nurses, complete with a disco ball. </span></div>
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<span style="font-family: Verdana, sans-serif;"> Despite the struggles with my faith lately, I can only believe that it has been God and your prayers that has sustained our family. My husband Aaron has had to act like a single Dad since Christmas, taking care of four children, a home and a job. He even has made time to come and visit us when he can. My other children are worried for their sister, and miss us terribly. They now have to go back to school this week, as if life were normal. Yet, somehow, they keep going. We have had to ask so much of Hazel these past weeks, and it has been hard on her. But God continues to lift her up and helping her push through. On the days where she has cried out, "I can't do this! I wish I never had cancer! This is the worst thing to ever happen to me!", she somehow still manages to gather enough courage to do what needs to be done. Logically, a six year old girl would not usually be able to face these kinds of things. Most of the time, they cannot even face the monsters that they believe are hiding under their beds. Yet Hazel fights this very real, and very scary monster every single day, and it is all she has ever known. So, for me, that only points to a divine strength that must have been gifted to her. </span></div>
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<span style="font-family: Verdana, sans-serif;"> Yes, I still struggle with the thoughts of "How could God allow something like this?" or "Why would God let these children suffer?". But I also know, that cancer is not FROM HIM. It is a product of living in a broken world. But it is hard still to understand. Bitterness and anger are comfortable when walking this path, and I am trying so desperately to see the light. So when I see Hazel, and my four other children, being so brave and strong through all of this, it helps me to see that light, even if only for a moment.</span></div>
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<span style="font-family: Verdana, sans-serif;"> If you are still with me here, at the end of this lengthy post, thank you. I ask you now to keep praying. Pray for the good kind of <b>progress</b>. We want to see something finally nail this thing, and we want to go home. </span></div>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com39tag:blogger.com,1999:blog-2929156501925638565.post-61022999402480585152017-11-13T19:32:00.000-08:002017-11-13T19:58:33.239-08:00What is "normal"?<div style="text-align: center;">
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<span style="font-family: "verdana" , sans-serif;">"Normal" for a cancer family becomes a very relative term. "Normal" can mean vomiting every day or not pooping for many of them. "Normal" can mean rushing out for random food requests at 1:00 in the morning, and wiping sweat from a sleeping brow. And in"normal" even bad news can seem like good news.</span><br />
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<span style="font-family: "verdana" , sans-serif;">This week in the hospital has been filled with many things that all the doctors and nurses are calling "normal", but it has been no where close to the normal that we want. In fact, some of this week has been utterly traumatizing, if I'm being completely honest.</span><br />
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<span style="font-family: "verdana" , sans-serif;">If you have not seen on our Instagram or Facebook pages, Hazel began to experience some pain in her back, near her tumor site, after only a day discovering her relapse. By last Saturday, her pain was unbearable and unmanageable. We were prescribed an oral pain medication, in hopes of handling it at home, but it came nowhere near touching it. Sunday morning, after a completely sleepless night, Hazel vomited and was barely able to move. The doctor requested that we bring her in for assessment in the ER.</span><br />
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<span style="font-family: "verdana" , sans-serif;">While in the ER, Hazel has two doses of IV morphine, and still was in so much pain. It was terrible to watch. All I could do that would bring her any comfort, was hold her in my arms, trying to take the pressure off her back, and rock her side to side. Since her pain was clearly not able to be managed, we were admitted by that afternoon.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Hazel was put on a continuous drip of morphine, and it took us several days to find a dose high enough to make her comfortable, but even then, she was having breakthrough pain, and itchiness as a side-effect from the medication which just added to her discomfort.</span><br />
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<span style="font-family: "verdana" , sans-serif;">One of the biggest concerns was that the pain was caused by the tumor growing, and possibly compressing her spinal column. Monday, she was scheduled for an MRI, with sedation, to get a closer look at her spine, however, just as we were, most uncomfortably, getting in the wheel chair, I felt Hazel was burning up. We took her temperature, and her fever was above 103℉. For fear that this was caused by an infection in her port, the doctors did not feel safe pushing a bunch of sedation medication through her line, possibly spreading that infection to the rest of her body. She had already not been eating all day in preparation for this scan, and being told that at 3:00pm it was all for nothing, was pretty devastating for a six year old girl.</span><br />
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<span style="font-family: "verdana" , sans-serif;">But since her pain was still so great, they did not want to push the scan back, and asked if she would be willing to try it awake. She has done many of her scans awake, so after some anxiety reducing conversation, she finally agreed to do it. However, it wasn't until after 9:00pm that they finally could take us down, and the waiting wasn't good for her already high anxiety.</span><br />
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<span style="font-family: "verdana" , sans-serif;">We got down to the machine, and the sounds and enclosed space made Hazel absolutely terrified. They had noise cancelling headphones, and VR goggles to watch a movie, but nothing helped. They put her in for only a minute, and she screamed in panic. I asked if there was any way that I could sit on the bed with her, holding her hand, and the technician said the only way I could do it, was if I laid at her feet. So, up I went, stomach down on the bed, arms above my head, holding her hands, and we went in that MRI machine together. 90 minutes together was better than 90 minutes alone. I told her that I have always been by her side, and that we have been through so much together, that this would be no different. We would get through it together like we've always done. She cried a few more times, but held still enough that they only had to repeat one image capture!</span><br />
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<span style="font-family: "verdana" , sans-serif;">Tuesday, we seemed to have a better handle on her pain, but she was already scheduled for her tumor and bone marrow biopsies, so it was going to be another day with a procedure. Another day of anxiety. Another day of Hazel's "normal". Since she was now on antibiotics for the possible infection, they felt safe to sedate her for this procedure. It went smoothly, but she woke up in even more pain than before, I suspect because we aggravated the tumor and the needle pokes cause a lot of soreness, and became angry with what seemed to be the whole world.<br /><br />She would say, "This is the worst thing to ever happen to me! I hate this, I hate this! I wish this never happened! I just want to be a normal girl, and never have cancer. I can't keep doing this! Nothing is helping, and nothing is ever going to help!"</span><br />
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<span style="font-family: "verdana" , sans-serif;">I can't even begin to describe to you the helplessness I felt in these moments. All of the fears and frustrations I have had for her these last four years, and thankfully have been able to keep away from her, were all coming down on her at once. The possibility of her cancer growing was becoming very real to her this last week, and there was nothing I could do or say to take that fear away, because I was fearing the same things. All I could do was tell her that it was okay to get angry, to kick and scream, to cry and to be afraid, but that she should know we have the BEST Neuroblastoma doctor by our side, fighting with us, and we have a lot of different medicines that we could keep trying. I promised her that I would never leave her side and that we would at least figure out how to manage this pain, it just was taking longer than we wanted it to. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Most nights this week, Hazel has not even wanted me to sleep outside her own bed, and has been nervous when I step out, even just for a moment. So even though I couldn't take her pain or fears away, I was glad that she felt comforted in my love and in my arms.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Wednesday, she had to have one more scan, to determine if her tumor is MIBG avid. To Hazel, it didn't matter that it was important for us to do this so we could find the right treatment for her, it just mattered that she had to go through something else. She was afraid of laying flat on her back, due to her pain, and didn't think she could hold still. And if you know Hazel, once she gets stuck in a thought, it is not easy to get her out of it. She spent almost the entirety of the two hour scan, crying, but to my amazement, still holding still enough to get all the images we needed. We were both exhausted, frustrated and broken, but her resiliency and bravery kept me going. I stroked her new hair growing in, and told her stories, sang her songs, and help distract and comfort her the best way that I could.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I was so nervous waiting for these results, but thankfully we got them sooner than later. The MRI showed no growth in the spine (thank GOD!), but the tumor seemed to be grabbing on the bone. However, this was not enough to be causing the kind of pain she was experiencing. The MIBG/CT scan showed that, like her last relapse, her tumor is not MIBG avid, thus closing off one potential treatment, but that's okay, because it's not the only option. The CT portion of the scan showed two things. First, it showed that her tumor had not really grown that much in size since her scan on the 30th. </span><br />
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<span style="font-family: "verdana" , sans-serif;">This whole past week, I thought I was literally watching cancer eat my daughter alive as it was causing her so much agony. So the fact that it hadn't grown, and hadn't spread felt like a ridiculously giant, cartoon, ACME anvil was lifted off my chest. The pain, while awful, was not caused because the cancer was too quick for us, and it allowed me to feel safer taking some time to make decisions about her treatment moving forward.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Second, the CT showed something new. Hazel's lungs seemed to have a build up of fluid that was not present on any of the previous scans. So, yet another CT, this time with contrast, was scheduled so we could get a better look. It was supposed to be scheduled for Thursday, but in the middle of the night Wednesday, Hazel's oxygen levels began to drop, and we were sent down to an emergency CT at 2:00 in the morning. The CT room that we were in was the same room that she had her very first scan at Children's Hospital back in 2013. And just like that first diagnosis time, Hazel has been in pain, having fevers, has been exhausted, been sweating like crazy (as you can see in the picture below) and was falling asleep during the scan. Maybe it was the fact that I was sleep deprived, coupled with the fact that so many of her symptoms and our experiences were mirroring what we have already been through, but I felt like I was transported back in time and was living in the twilight zone. My brain just did not know how to cope. My dreams, at this point, were feeling more real than the nightmare of a week we were living.</span><br />
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<span style="font-family: "verdana" , sans-serif;">The CT showed that Hazel had a pleural effusion (fluid in the space around her lungs) in both lungs, but it wasn't clear what was causing it. It could have been an infection, but the scan showed no signs of pneumonia. It also could have been the tumor pushing into that space, making fluid leak easily. OR it could have been that the tumor itself was growing into the lung space. Something I don't think I shared, was that this tumor is located up between her diaphragm and lungs, wrapping itself around the aorta and growing roots that are attaching itself to everything it can. It's grabbed onto one of her ribs and her spine, although not infiltrating them or any organs yet. But it is in a precarious position and can cause a lot of issues if we aren't careful. At this point, I'm calling her tumor a greedy little bugger.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Because the CT scan did not give us clear enough answers, and she spent much of Thursday needing an oxygen mask on her pillow, next to her face, she had to be sedated, once again, on Friday for another needle poke, in order to pull out the fluid to test it for infection and/or tumor cells. While in there, the doctor decided to just remove the fluid from that lung he was testing, and ended up pulling about 200cc of fluid! Thankfully, this seemed to help Hazel a lot because she no longer needed oxygen for the rest of Friday and all of the day Saturday.</span><br />
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<span style="font-family: "verdana" , sans-serif;">During all of this time, Hazel's pain was still not managed, so the palliative care team was called in. I know that "palliative care" is a scary term, but they are not only called in for patients needing end of life care but are called in for any and all patients in need of extra pain support. My friend Melissa, another cancer mom on the floor, and who has been such an unbelievable support this last week, suggested that maybe they need a new name for when they are dealing with patients like Hazel, so as not to scare off the parents. When I met with them, I felt for the first time that there was someone who was understanding Hazel's pain and knew exactly what needed to be done to help her.</span><br />
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<span style="font-family: "verdana" , sans-serif;">The plan was set that Hazel was to go onto oral Methadone, instead of the continuous drip of pain medication she was receiving. Methadone is longer lasting, and does not usually have major breakthrough pain episodes, like she had been having this week. Plus, since it was oral, if we could find the right dosing, we could eventually go home and continue treating her pain, instead of being stuck inpatient. We slowly transitioned her over, and weaned her off the continuous IV med, leaving the pump on, if she needed to push the button for pain control. </span><br />
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<span style="font-family: "verdana" , sans-serif;">The first two days on Methadone were great! I felt like we finally were ahead of her pain, and she was sleeping soundly at night, and feeling more like herself during the day, even getting up to play and be silly. Plus, the soreness from the biopsy sites were finally fading, so I am sure that helped as well. This is when Hazel's oncologist and I began to discuss treatment options for her tumor. </span><br />
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<span style="font-family: "verdana" , sans-serif;">When Hazel first relapsed, our goal was to get her on a new clinical trial, with a newly developed ALK inhibitor called Lorlatinib. As you may remember, Hazel's cancer has a mutation of the ALK gene, which is thought to drive cancer growth. These inhibitors target that mutation, and treat the tumor with much less toxicity than chemo and radiation. It was the ALK inhibitor, Crizotininb, paired with two different types of chemo that finally got Hazel into remission during her last relapse. We discontinued the chemo in July, and kept her on the inhibitor (which is a daily pill), in hopes that we could keep the cancer at bay, and give Hazel's body a chance to strengthen and be off of chemo. However, it was on this medication that he tumor grew. </span><br />
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<span style="font-family: "verdana" , sans-serif;">This new ALK inhibitor, Lorlatinib, is much more promising thatn the Crizotinib, and was performing better on its own than the Crizotinib did when paired with chemo. One article I read said that the lab results were showing "unparalleled responses" and causing mice to go into "rapid and sustained regression." So we have a lot of hope for this trial. However, since her rapid deterioration in just five days post her initial scan on the 30th, we were not sure that we were going to be able to make it to the start date for the trail, which is Tuesday Novemeber 14th, because it was just giving her tumor more time to wreak havoc. If we found that we did not feel it was safe to wait, we were going to push the trial back, and start high dose chemo immediately.</span><br />
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<span style="font-family: "verdana" , sans-serif;">However, by Saturday, Hazel seemed much improved, and we both felt comfortable holding the chemo off, unless anything changed. Dr. Marachelian also discovered what she thought was finally the answer to what was causing Hazel's pain. She read about a phenomenon that happens with patients who's tumors only partially respond to the ALK inhibitor, Crizotinib. It was like her tumor was a car that was driving down hill, and the inhibitor was the brakes, keeping it from growing/driving out of control. Once the Crizotinib was discontinued on Halloween, something called a "tumor flare" occured, and it was like the brakes were lifted and the car shot down the hill at break-neck speed.</span><br />
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<span style="font-family: "verdana" , sans-serif;">These "tumor flares" cause a lot of problems, but problems that are usually temporary. So the hope is that the fluid in her lungs will begin to disappear as the flare settles down, and that her pain will subside and she can be taken off the pain meds. So please pray that this is the case!</span><br />
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<span style="font-family: "verdana" , sans-serif;">(I hope you are still hanging in there, I know this update is long! It speaks to the eternity that this week has felt like for me!)</span><br />
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<span style="font-family: "verdana" , sans-serif;">Saturday evening, I was feeling pretty good. Hazel's pain was controlled, I was coming off a good night's sleep from Friday night, and it looked like we could start the trial on Tuesday, and begin talking about going home! At 9:00pm, Hazel's nurse came into the room to give her the next dose of Methadone, and I came over to her bed to wake her up, only to find that it was extremely difficult to do so. She could open her eyes for a moment, maybe answer a question or two, and then her eyes would cross or roll back into her head, and she would be out again. At first, I found it funny, but after a few minutes, my heart began pounding, as she was getting harder and harder to wake up. I was shaking her, patting her face, tickling her, putting ice packs on her, and nothing was working. I felt like I was facing the moment that we have spent the last four years fighting to avoid.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Then, the worst thing happened. Her heart rate plummeted, and her respirations slowed so much so, that many times she even stopped breathing. We had to rush everyone in the room, put her on oxygen and administer an emergency dose of Narcan (what they give to patients when they overdose on drugs). Narcan blocks the pain receptors in your brain, thus reversing the affect of Methadone in her system. The team believed that the Methadone, since it is long lasting and can build up, was over sedating Hazel to the point of respiratory distress. The Narcan did its job and woke Hazel, but she woke in a very traumatizing way. She was screaming in pain, mostly in her head, and her heart rate skyrocketed. She immediately needed to use the bathroom, and then began to uncontrollably shiver. Eventually she drifted back to sleep in my arms, and continued to breathe safely the rest of the night. Needless to say, I did not sleep very much.</span><br />
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<span style="font-family: "verdana" , sans-serif;">My body was a mess that night, and I felt so broken. I hadn't really had a break down all week, being in fight mode, but there was no avoiding this one. I just fell apart. I begged God to never let Hazel, or myself experience that again. </span><br />
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<span style="font-family: "verdana" , sans-serif;">They had decided to hold the Methadone dose overnight, and then restart it at a lower dose Sunday morning. She had a wonderful Sunday. The best I had seen her all week. She was finally eating, albeit still very little, was laughing, dancing and playing, and said that she had zero pain. I thought we were finally coming to the other side of the very dark tunnel we had been in. </span><br />
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<span style="font-family: "verdana" , sans-serif;">But then, around 5:00pm, I couldn't wake her again, and she spiraled down into the same symptoms she had the night before, not breathing, and needing a dose of the terror inducing Narcan. And it didn't only happen once, but it happened twice. The thing I had prayed to never experience again had now happened three times. We both felt so overwhelmed and afraid. Hazel didn't want me to leave her side, and asked me to sleep in her bed and hold her hand. I stayed up, constantly watching the monitor, hoping I would not see the trend begin again. In the middle of the night, the decision was made that all Methadone would be discontinued, and she would use the pain medicine pump connected to her line until we figured out what to do for her pain.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Today however, her pain has not returned, and she has not needed to push the button once! So our hope is that the "tumor flare" is no longer flaring, and has made the pain subside. Either that, or there is still Methadone in her system. We are going to watch her closely over the next few days, and if her pain returns, we will try something else. Never again will I give her Methadone, that's for sure.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Despite having a very good, cheerful and pain free day, she spent most of it asking all of us if she would ever need "that medicine that made her head hurt" again, watched her own monitor closely and worry if she saw any sign of a dip (she is sometimes too smart for her own good), and afraid to go to sleep because "she felt like she would die if she stopped breathing again." How do you comfort a six year old child, afraid she is going to die in her sleep, when you are fearing the same thing? How do you help them find the rest they so desperately need? I feel like her: It's not fair! I wish this never happened! She doesn't deserve this!</span><br />
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<span style="font-family: "verdana" , sans-serif;">This should not be her "normal". Celebrating little tumor growth should not be "normal". Being glad that she is breathing after respiratory distress from a medication meant to help her should not be "normal". Being happy to see our hospital family because we are inpatient should not be "normal". The fact that we survived enough days to make it to a clinical trial tomorrow, that we are hopeful about but do not know if it will work, is good news, is not "normal". Having childhood cancer should not be "normal".</span><br />
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<span style="font-family: "verdana" , sans-serif;">As I am sure you can tell, I have really struggled through this week. I have felt angry, terrified, bitter, exhausted, worn down, defeated and so so sad. But I have tried to, everyday, hang onto any glimmer of hope I have for Hazel. Hope in this new clinical trial. Hope that her biopsy results will come back with information that will be helpful to us in her treatment. Hopeful that God has her in the palm of His hands, and loves me despite my bitterness. When my children are angry at me, do I turn away and abandon them? No! I do everything I can to reconcile and to show them how much I love them. My FATHER is no different. Please pray that I can remember that, that I can feel that, and that I can hold onto that.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /></span>The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com37tag:blogger.com,1999:blog-2929156501925638565.post-88674470295161414482017-10-31T11:33:00.001-07:002017-10-31T11:33:02.818-07:00Scan Results 10/31/2017<span style="font-family: Verdana, sans-serif;">You guys, I don't even know what to say right now, so I just am going to get right to it....</span><br />
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<span style="font-family: Verdana, sans-serif;">Our little Hazelnut has relapsed again.</span></div>
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<span style="font-family: Verdana, sans-serif;">To say we are devastated that she relapsed so quickly out of treatment, would be a gross understatement. But this is the reality of childhood cancer.</span></div>
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<span style="font-family: Verdana, sans-serif;">Childhood cancer does not discriminate.</span></div>
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<span style="font-family: Verdana, sans-serif;">Childhood cancer is relentless.</span></div>
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<span style="font-family: Verdana, sans-serif;">Childhood cancer takes childhoods.</span></div>
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<span style="font-family: Verdana, sans-serif;">Childhood cancer is murderous.</span></div>
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<span style="font-family: Verdana, sans-serif;">We knew that this would be a possibility, because once a child relapses with Neuroblastoma, the likelihood of it recurring becomes very high, upwards of 80%. So it isn't that surprising, but it is still a punch to the gut.</span></div>
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<span style="font-family: Verdana, sans-serif;">You always hope that it will be your child that will be the odds. Your child that will not be one of the statistics. Your child that will beat this thing. </span></div>
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<span style="font-family: Verdana, sans-serif;">But the reality is, cancer doesn't care who your child is, how strong they are, or how many people they have surrounding them in prayer and support.</span></div>
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<span style="font-family: Verdana, sans-serif;">As of right now, we are still waiting for test results to determine the extent of her relapse, and we are going to perform some more tests next week to get a bigger picture of what is going on, so I will keep you updated.</span></div>
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<span style="font-family: Verdana, sans-serif;">The good news, is that this recurrence, as it is right now, is not urgent. We were not asked to drop everything and begin treating it immediately. We have time to study it, and make the best plan we can. And we have one of the best Neuroblastoma doctors on our side. Hazel's oncologist, Dr. Marachelian, is not only an incredible physician, but she is also a leading researcher in the Neuroblastoma world, being crucial in some of the most recent advancements.</span></div>
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<span style="font-family: Verdana, sans-serif;">We will continue to do everything we can to save our daughter, and before anyone comes to me with messages of "miracle cures", please know that we have not left any stone unturned. She is already using Cannabis Oil and essential oils, we follow an anti-cancer diet, and she takes all kinds of supplements and probiotics. We still believe these can help her, but if they were going to save her, they would have done so already.</span></div>
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<span style="font-family: Verdana, sans-serif;">We just humbly ask that you stand by our family, holding us in your thoughts, hearts and prayers, as we try to make the best and some of the most difficult decisions we can for our little girl.</span></div>
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<span style="font-family: Verdana, sans-serif;">We still have Hope for Hazel, as she has beat this thing twice, and we can believe that she can do it again. But please pray for our spirits, as it is so easy to lose hope, and to be overcome with fear and bitterness. I have held onto some of that bitterness, and have even directed it toward God, so I beg you to please hold us up in prayer so that we may see His goodness, His peace, His love.</span></div>
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<span style="font-family: Verdana, sans-serif;">Until we have more answers next week, we get this week to spend time together as a family, building as many happy memories as we can. We have not told the children yet, (please, if you see them, do not say anything) as we would like them to have a carefree Halloween. Although, Hazel, who is too smart for her own good, does already know. </span></div>
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<span style="font-family: Verdana, sans-serif;">In true Hazel fashion, she took the news unbelivably well. She stood up determined, wiped her hands and said, "Okay." Then on the way home she started jokingly yelling in anger, "Cancer, you get out! I'm going to punch you and kick you out of there. No! I'm going to push so hard, that I'm going to poop you out. No chemo, just poop you out!" </span></div>
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<span style="font-family: Verdana, sans-serif;">She laughed and then said, "Okay, I'm making this too funny now".</span></div>
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<span style="font-family: Verdana, sans-serif;">I said, "No honey, absolutely not. You make it as funny as you can. The best thing we can do right now is stay positive and have hope. So you make all the jokes you want to, my love."</span></div>
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<span style="font-family: Verdana, sans-serif;">Last night, I was reminded of something she said on Sunday while we were at the park celebrating my youngest son's 5th birthday. She breathed in the crisp fall air, looked up to the sky and said, "The world is beautiful today". And despite this news, my daughter is right, the world is beautiful today and we will hold onto that.</span></div>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com42tag:blogger.com,1999:blog-2929156501925638565.post-33460347080192646722017-10-10T20:48:00.002-07:002017-10-10T20:48:48.267-07:00A Slice of Life<span style="font-family: Verdana, sans-serif;"> Oh my goodness, how has it been 2 1/2 months since I last updated?! For those of you who may have been worried, my apologies! But for those of you who know me personally, know that I have not updated because we, as a family, have been absolutely reveling in the unexpected gift of "normal" life.</span><br />
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<span style="font-family: Verdana, sans-serif;">Most importantly, our little Hazelnut is doing great! She has been off of chemo since our last update in July, and on her daily ALK Inhibitor medication, which has meant that her body has been recovering. Her color is back, her hair is growing, she is gaining weight, and has been eating everything in sight. After barely eating anything for a year, I'm so thankful for that last one! Also, her anxiety levels have lowered, and more and more each day, I have seen her joyful disposition return. It has been so nice to see my girl again!</span><br />
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<span style="font-family: Verdana, sans-serif;">In the middle of August, Hazel began 1st grade. All summer, she was very nervous, believing she would not be able to keep up with her friends, or that people would laugh at her because of her bald head. But school has been nothing short of incredible! She ha caught up faster than I though she would, and absolutely loves learning. Her friends all love and adore her, many of them wearing their "Hope for Hazel" bracelets, and never once making her feel like an outsider. </span><br />
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<span style="font-family: Verdana, sans-serif;">At the end of August, we hosted our annual Ever After Ball, benefiting the St. Baldrick's Foundation. Last year, we raised a little over $50,000, and this year was even better! WE RAISED $83,000 (and still counting)!!! And because both Hazel and Zein Youssef (the young boy who we honored at our event, and is a fellow Neuroblastoma fighter) have battled Neuroblastoma, and the doctor we honored is the Medical Director for the New Approaches to Neuroblastoma Therapy (NANT) consortium, St. Baldrick's decided to gift all of our proceeds to NANT to ensure that all of that $83,000 goes to Neuroblastoma research! What an amazing night it was!</span><br />
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<span style="font-family: Verdana, sans-serif;">In September, we had another incredible thing happen to our family, in the form of a much needed vacation, but I want to save that for another post. It really came at such a good time though, because September, being Childhood Cancer Awareness Month, was much harder for me, emotionally, than I anticipated. As many of you know, this last year I went into a very deep depression. There were days where I spent much of it on the floor in a puddle of tears, and my brain was so overloaded, that there were many times where I couldn't even figure out how to do laundry, or even take a shower. After many months of therapy, and medicinal and natural assistance, I am finally beginning to feel more like myself each day. I can see the joy where I didn't see it before. I can be positive in moments, when before, all I could see and feel was hopelessness. But in my recovery, I have had many ups and downs, and September was filled with many down days. I had to take it upon myself to remove social media from my life as much as I could. The stories, the images, the friends who were suffering were just too much for me to take. Of course, I felt guilty leaving those I love without my support. But what I realized, is that if anyone understands why I had to do what I had to do, it was these very families. They understand better than anyone, the intricacies and the depths of despair a parent of a child with cancer can feel. So although I wish I could have stood by them in support and in raising awareness for childhood cancer this year, I also know that they get it...</span><br />
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<span style="font-family: Verdana, sans-serif;">With that, I would like to thank all of you who, in our absence, stood by us and continued to show your support. It really has meant the world. I hope I can continue to recover, along with Hazel, and we can keep all of our friends, families and supporters up to date. </span><br />
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<span style="font-family: Verdana, sans-serif;">That being said, our most recent update includes what is upcoming for Hazel. Her doctor wants to keep Hazel on her ALK inhibitor for as long as she can tolerate it, and as long as she stays NED. We will continue to check in with the doctor every month, to make sure she is still doing well on it. Then every three months, she will have scans. Her next set of scans are actually already around the corner! <b>Her scans are scheduled for October 30th.</b></span><br />
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<span style="font-family: Verdana, sans-serif;">Since these are the first scans off chemo, I am very anxious. Please keep her, and our family in your thoughts and prayers. For now, I will leave you with a few photos of our beautiful, healthy looking girl:</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com4tag:blogger.com,1999:blog-2929156501925638565.post-36826003882098211542017-07-25T11:20:00.003-07:002017-07-25T11:20:39.873-07:00Crucial Scans<span style="font-family: Verdana, sans-serif;"> These past several weeks have been very busy, and sometimes very difficult for our family, so please forgive the lack of updates. As you may have seen on our Facebook page, Hazel's second of three rounds that we hope to be the last, was pushed back due to her platelet count not recovering enough. So her doctors and we decided that with her body being as tired as it is, she would not need to complete a third round, and instead pushed up her scans to TODAY! </span><br />
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<span style="font-family: Verdana, sans-serif;"> If her scan results today come back clear (like we hope the last ones were), she can be finished with chemotherapy! She will remain on her ALK Inhibitor medication at home for an indefinite amount of time, but the harsh, hospital visit requiring, adult strength chemotherapy no longer will have to be pumped through our daughter's veins! So these scans are absolutely crucial and we beg you for your thoughts and prayers.</span><br />
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<span style="font-family: Verdana, sans-serif;"> For me, it is difficult to remain hopeful for these results, because the last time I felt hope, our world was shattered with the news of her relapse. My depression and anxiety have also made it near impossible to see the light at the end of the tunnel, so I am personally, really relying on YOUR hopefulness and prayers, and that of my amazing family and friends to get me through. The road of a cancer parent in arduous, long, and can make even the strongest of spirit fall to their knees in desperation. So if you know of anyone walking this road, don't be afraid to reach out out of fear of being an imposition, or not knowing what to say. Let them know that, although you may not know what to do or what to say, you are here for them and you love them. And that despite their circumstances, you know that they are also a human being with emotions and needs that can be cared for. Show up for them. Love them. Pray for them. Don't forget them in their long journey. I can tell you for sure, they will be overwhelmingly grateful.</span><br />
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<span style="font-family: Verdana, sans-serif;"> As soon as I get results, I will post here to share them with you, so be on the look out. Thank you all so much for your continued support for our daughter and for our family. We love you all!</span>The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com23tag:blogger.com,1999:blog-2929156501925638565.post-22469369497916794262017-05-30T11:50:00.004-07:002017-05-30T11:50:41.946-07:00A Ray of Hope<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Verdana, sans-serif;"> In case you missed the video posted on our Facebook page, here is an update on Hazel's scan results:</span></div>
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<span style="font-family: Verdana, sans-serif;"><b>NO EVIDENCE OF DISEASE!!!!!</b></span></div>
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<span style="font-family: Verdana, sans-serif;"> Hazel's doctors could not detect a single bit of cancer inside her little body, neither in her scans or her bone marrow biopsies, and boy are we thankful! 9 months ago, when our little Hazelnut relapsed, things looked very bleak and grim. Statistics for relapsed Neuroblastoma are so bad, that we didn't even discuss them with her doctors. And to be honest, there were many a night where Aaron and I collapsed in heaps of tears, thinking about the strong possibility that we may have to let our daughter go.</span></div>
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<span style="font-family: Verdana, sans-serif;"> When treatment began to work, I scarcely allowed myself to hope, knowing full well that Neuroblastoma is smart and tricky, and can mutate in a way to resist treatment that was once effective. My deep depression and anxiety has made it very difficult for me to take a deep breath, to see any light, or feel any hope. And when you feel hopeless, you feel helpless. These last 9 months have truly been a hell that I would never wish upon anyone.</span></div>
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<span style="font-family: Verdana, sans-serif;"> But today is different.</span></div>
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<span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">Today, there is light.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Today, there is joy.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Today, there is hope.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Today, my daughter's body is rid of this disease, and we can take that deep breath, and keep on fighting. While I still struggle with bitterness, exhaustion, fear, and anger; today it is a little bit easier to see through those feelings, and grab onto that hope that I have so longed for.</span></div>
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<span style="font-family: Verdana, sans-serif;"> After going over these results with her team, and knowing how Neuroblastoma cells like to hide out, dormant, ready to grown at any minute, we have all decided that it would be best to continue chemotherapy for another three cycles (5 day courses every 4 weeks), and scan again. If these next scans are again clear, she can be finished with this harsh regimen and begin a maintenance therapy for an indefinite amount of time.</span></div>
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<span style="font-family: Verdana, sans-serif;"> We sit here now, in the infusion center, beginning what will hopefully be the first of the LAST three rounds of chemo, and I can't even begin to describe to you what it feels like to see a possible end to this part of our journey. The fact that it is even remotely possible that Hazel could be in school in the fall, and that we would not be spending our days within these hospital walls, is an absolute miracle! However, it is still difficult for me to grapple with the fact that this cancer life will be with us forever, whether it is with Hazel beating this beast once and for all and I live with the fear of it coming back, or that it indeed comes back for her to battle once again. I long for the mundane, for the boring, for the normal. I'm terrified to keep living this life, for fear what it might do to my daughter, my family, and myself. But alas, this is our life, and I have to teach myself to choose to find the positives, to find the joy and to find the hope. Please pray that we can keep learning how to do that, and that God may fill us with His peace that surpasses all understanding, as I know that we cannot fight this battle alone.</span></div>
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<br />The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com11tag:blogger.com,1999:blog-2929156501925638565.post-37197746200297977252017-04-21T10:47:00.002-07:002017-04-21T10:47:31.968-07:00It Never Gets Easier...<span style="font-family: "verdana" , sans-serif;"> In this life of childhood cancer, it is very simple to make plans in our minds. Plans to do the dishes or the laundry. Plans to visit with friends. Plans to get our kids in after school activities. Plans to sit down an write an update.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> But following through on those plans....not so easy. Forgetting to even attempt to follow through on those plans....super easy. Feeling guilty for not being able to do them....even easier.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> A cancer parent's brain is filled with appointments, both planned and unplanned; (Hazel has had daily appointments for radiation for 12 weekdays straight, on top of follow-ups with doctors, unplanned blood draws and transfusions and unexpected ER visits); lab result numbers (a printed out page full of them); the most recent temperatures taken on a given day; schedules of the handfuls of daily medications that must be administered; thoughts on when the last time your child washed their hands or used hand sanitizer, or if you have enough of the numbing cream left in your medical supplies for the next time your child has to endure a port access, or if your child lost and gained any weight this week and ate enough healthy food to keep them strong; and fears about whether all of the hell you are going through is even going to be enough.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> Place all of this in the middle of a family of seven, each person with their own needs, desires, worries, and even health issues, and put it on the shoulders of parents just struggling to keep the tears from falling, their marriage together and their sanity intact, and it is no wonder that plans get changed, cancelled or forgotten.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> It has taken every single part of me just to get by these past weeks since my last update, that I can only focus on the victories that I got Hazel to her treatment, and my family fed and dressed for the day. And two days ago, it marked 4 years since Hazel's initial diagnosis, and it made me realize how long we have been at this.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> We are tired. We are weary. Our faith is shaken. Our brains are depleted. And cancer just doesn't let up. IT JUST NEVER GETS EASIER.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> But despite how weary we are, despite how sad we are, despite how scared we are, our little Hazelnut breaks through all of that with such strength, joy, courage and determination. Since I last updated you, she took on two more rounds of chemo (at the reduced strength) and took it on remarkably well. The side effects were far less overwhelming (she only vomited a few times and only spiked a fever once, sending us to hospital for a short two-day stay), so most of these last weeks she spent feeling well and in very high spirits. She then had twelve doses of radiation, administered by some of her favorite nurses in the entire hospital. The team makes this experience as enjoyable as possible (as much as you can for a child who has to lay perfectly still in a machine all alone), by playing music or movies, having "party lights" lighting up the whole room, </span><span style="font-family: verdana, sans-serif;">a sticker chart to fill out, </span><span style="font-family: verdana, sans-serif;">a treasure chest to pick out a prize each day, and just by having the most loving and joyful hearts. Hazel actually would jump in excitement each day she knew she had radiation! But although the treatment went really well, by the end of it, she was ready to be done. It made her very tired, and by the end of each day, pretty nauseous. The wear and tear of all of this treatment was showing on her little face. I think, that despite being strong, and brave, and joyful, she is just as ready as we are for this all to be over. </span><br />
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<span style="font-family: verdana, sans-serif;"> Since August, it has been difficult to hold onto hope, knowing that we did not have any concrete treatment plans and had no end in sight. And when you feel hopeless, you feel helpless. Going through treatment like that is a very difficult way to live. So when her last scans came back to positive, it felt like a breath of fresh air that we could finally take deep into our lungs. However, as cancer treatment goes on, that breath escapes our lungs as quickly as it goes in, so it isn't always very easy to keep holding onto that hope.</span><br />
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<span style="font-family: verdana, sans-serif;"> But we met with her doctor a few days ago, and will meet with her again next Monday, and she is still feeling very hopeful. She believes that this treatment has been working, and will continue to work. Her plan is to have Hazel get one more dose of this reduced strength chemo next week, and then do her scans sometime after that. Her hope is that we will see clear scans and then we can start to move Hazel onto some form of maintenance treatment, which will be far less toxic on her little body. She even hopes to have Hazel well enough to be back in school in the fall! But even though he hope gives us hope, we all know that Neuroblastoma is a sneaky little devil, and finds ways to mutate and become resistant to treatment. So these scans are still just as scary as any other.</span><br />
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<span style="font-family: verdana, sans-serif;"> Please keep praying for our family. We have been through seasons where God's presence was so evident in the journey we were walking, but right now it has become more and more difficult for us to remember His promises and to see His hand. We want to be honest with that. We don't want to hide. We want it so that people going through the same thing will also not feel alone, or isolated or guilty. We know we are not perfect, and we don't want to pretend to be. But we will continue to ask for your prayers, in faith, so that we may be lifted up and begin to see the light and the hope once again. Pray for our faith, pray for our children, pray for our marriage, and pray for our little Hazelnut.</span><br />
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<span style="font-family: verdana, sans-serif;"><br /></span>The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com11tag:blogger.com,1999:blog-2929156501925638565.post-78125353272452675962017-03-01T10:30:00.001-08:002017-03-01T10:30:50.094-08:00Postponement<div style="text-align: left;">
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<b style="font-family: verdana, sans-serif; text-align: center;"> TO HELP OUR FAMILY, JOIN HAZEL'S CARE COMMUNITY BY GOING TO <a href="http://www.heretoserve.org/" target="_blank">Here to Serve</a> AND FILL OUT THE REGISTRATION FORM</b></div>
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<span style="text-align: center;"><span style="font-family: Verdana, sans-serif;"><b> </b>Our meeting with Hazel's medical team on Monday was great! Her oncologist is thrilled to see the response her disease has had to this treatment, and is very optimistic for Hazel. The remaining tumor is so small, and hardly lighting up, that she believes it is almost dead itself. She does want to continue with chemo, until it is completely eradicated, but the good news is that she wants to reduce the strength and dosage of the chemo! She is confident that a lesser dose will still take care of the remaining disease, and wants to give Hazel's body a break from all of this toxicity. The hope is that this lower dose will reduce her side effects, and not make her counts drop for so long. So hopefully our little Hazelnut will be feeling better! She also discussed the possibility of doing radiation, to blast that spot and to make sure we have killed every last cell. This would happen sometime after this cycle, or the next one. </span></span></div>
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<span style="text-align: center;"><span style="font-family: Verdana, sans-serif;"> Hazel was supposed to start this next cycle of chemo just after our appointment, but her platelets were still not high enough to begin. So the doctors decided to postpone chemo for another week, giving Hazel more time to recover. At first, this made me nervous, because I did not want to give her cancer any wiggle room to grow, but now I am just so thankful. We now have another whole week together as a family, with Hazel feeling well, and we really really needed this. So we are going to take this time, savor it and enjoy it and start everything again next week! Thank you for your continued prayers! </span></span></div>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com10tag:blogger.com,1999:blog-2929156501925638565.post-66224213153344301062017-02-22T11:35:00.002-08:002017-02-22T11:35:27.310-08:00Scan Results<div style="text-align: left;">
<b style="font-family: verdana, sans-serif; text-align: center;"> TO HELP OUR FAMILY, JOIN HAZEL'S CARE COMMUNITY BY GOING TO <a href="http://www.heretoserve.org/" target="_blank">Here to Serve</a> AND FILL OUT THE REGISTRATION FORM</b></div>
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<b style="font-family: verdana, sans-serif; text-align: center;"> </b><span style="font-family: verdana, sans-serif; text-align: center;">We got the email just this morning, from the doctor, with our little Hazelnut's scan results! Here is what it said:</span></div>
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<span style="font-family: Verdana, sans-serif;">"The mass appears smaller! Now measures 1.5 x 0.6 cm </span></div>
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<span style="font-family: Verdana, sans-serif;">as compared to 2.1 x 1.0 cm. We will review it in our NBL</span></div>
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<span style="font-family: Verdana, sans-serif;">meeting [a weekly meeting with CHLA's Neuroblastoma</span></div>
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<span style="font-family: Verdana, sans-serif;">medical professionals] tomorrow morning"</span></div>
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<span style="font-family: Verdana, sans-serif;"> As you may remember though, Hazel does not only have one mass, but three different masses. So while I was elated at this news, I was curious as to why she did not have information on the other two. I wrote back to her with my inquiry and she responded swiftly with:</span></div>
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<span style="font-family: Verdana, sans-serif;">"Nada. No uptake to the other two areas!"</span></div>
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<span style="font-family: Verdana, sans-serif;"> You guys...Do you know what this means?!! This means that the scan could not even detect the other two masses, likely meaning they have been obliterated!! And the other one is not far behind! What sweet music this was to my ears and my soul this morning! God has blessed our doctors and our family with the hope of a recovery, and you have no idea how unbelievably good it feels!!!</span></div>
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<span style="font-family: Verdana, sans-serif;"> We meet with Hazel's team on Monday to discuss plans moving forward. From what we have continued to discuss, we will likely keep on this regimen until we get completely clear scans, possibly more than once, and then move on to something less harsh. But we won't know until Monday, what the exact plan will be. For now, she is scheduled to begin her next round after her appointment on Monday, so please pray we get the rest of the week together and that she gets to have these days feeling well and feeling strong!! Thank you all for your prayers!!</span></div>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com15tag:blogger.com,1999:blog-2929156501925638565.post-73631041901897635622017-02-18T21:22:00.001-08:002017-02-19T00:55:14.615-08:00A Quick Update<div style="text-align: center;">
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<span style="font-family: "verdana" , sans-serif;"><b>TO HELP OUR FAMILY, JOIN HAZEL'S CARE COMMUNITY BY GOING TO <a href="http://www.heretoserve.org/" target="_blank">Here to Serve</a> AND FILL OUT THE REGISTRATION FORM</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b style="font-weight: normal;"> </b>From the bottom of my heart, thank you for your prayers and good thoughts these past couple of days. Seeing you all rally around us was incredible and such a blessing of comfort and encouragement. Something I forgot to share in my last post, which made leaving on Thursday evening even more difficult, that Friday the 17th was Hazel's big sister, Elizabeth's 8th birthday. It tore my heart apart having to be separated and knowing that cancer was, once again, taking something away. Well through the incredible devotion of my husband, who stayed home from work to make sure she had a great birthday, and through the grace and love of our community of family, friends and even strangers, Elizabeth had such a wonderful day! Aaron and I were able to plan a scavenger hunt for her to find her present. He took pictures of some clues in our home and emailed them to me, so I could text them to Elizabeth on Aaron's phone when she got home from school. She just loved this! And all throughout the day, people came by and brought her cupcakes, flowers, balloons and cards, many of which she knew came per Mommy's request, so she didn't feel like I forgot her. When I spoke to her last night, I asked her how her day was, and she replied with and enthusiastic, "GREAT!". My Mommy heart felt such a swell of relief!</span></div>
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<span style="font-family: "verdana" , sans-serif;"> As for our little Hazelnut, she woke up today, a brand new girl! Her counts jumped up, her energy and appetite increased tremendously, and her spirits seemed to be headed back to her usual joy filled place. On top of that, for the first time in four inpatient stays, we were finally taken off isolation! Boy, what an amazing change it was to be able to go out of our room, and just take a walk! We hardly spent any time back in our room today! She was in the playroom, set up a tea party in the family lounge for us and her nurses, had a dance party and walked and walked and walked, of course with her and I donned with princess tiaras and fairy wands and blasting music from her iPad, just spreading joy wherever she went. It was so good for my soul to finally see her this way. It helps remind me that it is true that <b>"weeping may stay through the night; but rejoicing come with the morning" (Psalm 30:5).</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"> She's actually felt so well, that they discharged us at midnight, tonight ! So we got to go home! </span></div>
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<span style="font-family: "verdana" , sans-serif;"> While she was feeling well, this stay has still been difficult. Not because of how she was feeling, but because what cancer does to every family. We saw and heard many things this stay, that reminded me of why I fight so hard for more awareness and for a cure! As we walked the halls, we saw families breaking down in tears, just outside their child's room, likely from a new diagnosis, or facing the end. We met another family, who's child just received a diagnosis that is considered terminal, a word not uncommon out of the mouths of many childhood cancer families (this should just not be so!). And right next door, is this beautiful 1 year old baby, who unfortunately has been entirely alone our whole stay thus far. As an added difficulty, she has been on isolation, so she cannot be held by the nurses as they do their charting, and has been stuck sitting in her crib, day in and day out, all alone. As I hear her cry, and no nurse is around to comfort her, my heart shatters in a million pieces, thinking about how she just wants to be held and loved, and does not know why no one is there. Hazel and I have spent much of our time in her doorway, singing her songs, playing peek-a-boo, waving hi, and doing whatever we can to show her some love and bring her joy. It is moments like this that make me so incredibly grateful for the support system we have. I see, so often, how much Hazel needs me for her care and even just for her comfort, but thankfully, there has never been a time where she has been left alone for extended periods of time. But some families do not have the kind of support we have. Some come from other states, or even other countries, for treatment, and have no one to help. Some are single parents, or have to work several jobs to make ends meet, or have other children at home who have no one to take care of them, and since the child in the hospital has a wonderful medical team to take care of them, those families have to make the impossible decision to leave that child alone while fulfilling the other responsibilities that need to be met. </span></div>
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<span style="font-family: "verdana" , sans-serif;"> So as you pray for for us, please pray for the families who are struggling through this journey, some on much more difficult paths as we. They need a community like ours to help carry them through. So if you know of another family in your community, please reach out to them. Or find local childhood cancer charities in your area, and they can direct you to how you can help! Help these families know they are not alone!!</span></div>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com192tag:blogger.com,1999:blog-2929156501925638565.post-39448107851292919262017-02-17T17:37:00.002-08:002017-02-17T18:39:45.548-08:00Unpredictable<div style="text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><b>TO HELP OUR FAMILY, JOIN HAZEL'S CARE COMMUNITY BY GOING TO <a href="http://www.heretoserve.org/" target="_blank">Here to Serve</a> AND FILL OUT THE REGISTRATION FORM</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"> Unpredictability is the name of the game when you have a child with cancer, and yesterday was no exception.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> Only a day after updating you all that we were home and Hazel improving, things swiftly changed. For most of the day yesterday, our little Hazelnut just did not seem much like herself. She did not eat very much, and complained of being unusually tired, especially when she had to get up and move. While not uncommon, I definitely felt that something may be up. She also was bruising all over, which indicated to me that she was in need of platelets. Nurse Cyndi, our home nurse, came to draw labs in the morning, and I was expecting a phone call telling us to come Friday for platelets, but was surprised when the hospital called and said her white count and hemoglobin had also dropped again. They said that I could just keep a watch on her though, and we would assess her when we came in for the transfusion the next day.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Not even an hour later, I went to hug her, and felt her burning up! So I took her temperature and she was at 101.4. When I called the nurse, they told me that we would need to come into the ER immediately, and plan to stay. Needless to say, she and I were very frustrated with these turn of events. But, truthfully, I was more panicked then frustrated. Hazel has never spiked a second fever after her counts dropping and rising after chemo. So to me, this fever signaled that something could be seriously wrong. Coupled with the fact that Hazel crashed pretty hard after this phone call, falling asleep on the stairs while I was packing, I was terrified.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> Our other children, upon hearing that we would have to leave again after only being home for a couple of days, were utterly heartbroken. Sobbing and clinging to my dress and extremities, they begged us not to leave. It was so difficult to try and explain how potentially dangerous this fever could be, without frightening them, and about why it was so important for us to get to the hospital to treat it. All they knew, was we were leaving again, and they would have to just keep dealing with these changes and adjustments. Cancer is so hard on the whole family....</span></div>
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<span style="font-family: "verdana" , sans-serif;"> Once arriving in the ER, around 7:30 last night, we were quickly admitted and, of course her fever had dropped. But because she spiked at all, it is required to be admitted until her blood cultures show that she is clear of infection (results take 48 hours). It was also time to access her port. Hazel was so angry, scared, and tired at this point, that she was clawing her way out of my arms, screaming at the top of her lungs. After about 15 minutes of holding her tight and helping her through her emotions, she amazed us all by getting herself ready, taking some deep breaths and counting to 3 for her pokes. She simply astounds me.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> They were able to start antibiotics and fluids right away, and sent off for her platelets. In the time we were waiting for the nurse to return, she began vomiting uncontrollably and did not stop for about 30 minutes. Halfway through this time, she also needed to use the restroom, having diarrhea as well. As she was in the restroom, vomiting and on the toilet at the same time, she was so tired and was falling asleep between retching as I held her up in a sitting position. After a dose of Benadryl to help control her nausea, she fell asleep and did not vomit again. We were admitted to the floor and settled in our room at 2:30 this morning, and were absolutely bone-tired. </span></div>
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<span style="font-family: "verdana" , sans-serif;"> Thankfully, she was able to sleep right on through the night, and woke up feeling much better. She is still very nauseous, and not really eating, but the vomiting has been controlled, so I am grateful for that. Her hemoglobin was low again, so they gave her blood this afternoon, which definitely seemed to perk her up. But her white blood cell counts dropped again this morning, so there is no sign of us being able to go home anytime soon.</span></div>
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<span style="font-family: "verdana" , sans-serif;"> <b>Her bone marrow biopsies and scans are scheduled for Monday and Tuesday,</b> so we may still be here for those, but if we miraculously get discharged before then, we will head back down both days. Please be praying for these results. I truly believe all of this is because the level of toxicity in her body is reaching a point that she is having a much harder time recovering and is simply not tolerating it anymore, so good scan results could mean seeing an end to all of this. And please, let me kindly ask, for no comments telling us that we are poisoning our daughter with chemo, and that some miracle plant of food will cure her cancer. Please believe me when I say, we do not make these decisions for her treatment lightly. It isn't easy seeing our daughter this way, but we are doing everything we can. We follow as close to a ketogenic diet as we can, keeping out sugar and processed foods; we use several detox techniques, have her on a full and strict regimen of Cannabis Oil, probitoics and supplements; use essential oils daily, and so much more. Even knowing how wonderful, and successful all of these things are, Neuroblastoma is a vicious, and smart beast. We truly believe that her life not only depends on these natural therapies, but also on working in conjunction with the best that western medicine has to offer. So please know, we are doing everything we can, and these decisions are not easy, and unless you are in our shoes, you cannot make them for us. That being said, I so appreciate and am humbled by your hearts of concern and all the support and prayers you have all given our family. It lifts us up in these difficult, and sometimes dark times, and I truly could not get through these days without it.</span><br />
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com41tag:blogger.com,1999:blog-2929156501925638565.post-54023936997345077472017-02-15T16:32:00.001-08:002017-02-15T16:32:15.028-08:00Another Round Complete<div style="text-align: center;">
<span style="font-family: Verdana, sans-serif;"><b>**TO HELP OUR FAMILY, GO TO <a href="http://www.heretoserve.org/" target="_blank">Here To Serve</a>, AND CLICK JOIN**</b></span></div>
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<span style="font-family: Verdana, sans-serif;"> Let me begin by saying how humbled I am by the outpouring of support, love and encouragement I received after my last post on hope. It felt so heartening to know that my honesty and transparency about my own struggles was something that not only spoke to you and brought about awareness for the lives that families with a child with cancer live, but also brought encouragement to those of you who may struggle with the same things. So thank you, from the bottom of my heart.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Second, I apologize for not posting here sooner, but since our last post, our lives got very overwhelming, with some positive and some more challenging things. We spent time celebrating and savoring Hazel's birthday! We went to Disneyland with our family, hosted a birthday party (combined with her big sister Elizabeth, whose birthday is very close) and were the grateful recipients of a special Unicorn Party put on by the amazing foundation <a href="http://createsmiles.org/" target="_blank">Create A Smile</a> (a product of the love and devotion of a fellow cancer fighting family, The Youssef Family, to other children fighting this disease). </span></div>
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<span style="font-family: Verdana, sans-serif;"> Unfortunately, in the midst of all the blessings and fun, our whole family developed very bad colds, including Hazel. And, for me, it turned into one of the worst flus of my life. We were dealing with illnesses for the better part of two weeks, and boy I was exhausted!</span></div>
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<span style="font-family: Verdana, sans-serif;"> Not long after recovering, and with Hazel and I still affected by a lingering cough, we began her fourth round of chemo. We had to be down at the hospital (45-90 minutes away, depending on traffic), every morning by 8:00am, and stay for several hours while the infusion was completed. We were able to have the weekend at home, but come Monday morning, Hazel was extremely run down and spiked a really high fever. We rushed back to the hospital and were admitted. Her white blood cell counts were absolutely zero, so she was extremely neutropenic and fighting a fever. So antibiotics were begun to protect her from anything life threatening. The challenge with these antibiotics, is they cause her severe diarrhea and cramping, and quite a bit more nausea. The last two inpatient stays, her gut was so upturned, that she developed C-DIFF, which had to be treated with more antibiotics that made her equally nauseous. Thankfully, this stay, she DID NOT DEVELOP C-DIFF!!! We were able to break the vicious cycle, if only for one cycle! So thank you for all of your prayers, because they are clearly working! Thank you God, for giving our daughter a reprieve! </span></div>
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<span style="font-family: Verdana, sans-serif;"> Although she did not develop C-DIFF, she did still have some pretty significant diarrhea. I spent most of those first days helping her through her discomfort and encouraging her as she would tell me, through tears, "I just want to be done feeling like this!" When the urgent diarrhea stopped, she then developed a profuse bloody nose, that lasted throughout much of an afternoon. Not only was this terribly frightening for her, but the clots that developed after, slipped down her throat, making her gag a vomit them back up. She found it increasingly more difficult to cope, and it just broke my heart. Thankfully, over the next several days she felt better and better, and we were able to return home very late Sunday night. To say we are exhausted would be an understatement!</span></div>
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<span style="font-family: Verdana, sans-serif;"> Clearly, these treatments, and subsequent inpatient stays have really begun to take their toll on our little Hazelnut. Because she has been so nauseated and vomiting almost daily (sometimes, several times a day), it has made it difficult for her to keep weight on. As her counts keep getting knocked down to nothing, she barely has time to recover in time for the next round. She is so tired and unsettled from the constant traveling and changing in schedules, and is becoming more and more frustrated with not feeling well. Despite her challenges though, God has blessed her with a spirit of bravery and perseverance that has carried her through each day and each challenge. She faces each treatment and hospital stay without complaint, she breathes deeply through every single poke, and she even spends time reassuring me (for example: "Mom, it's ok if I throw up, because I always feel so much better afterwards"). </span></div>
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<span style="font-family: Verdana, sans-serif;"> Her perseverance inspires me every day, and brings me so much hope. I am reminded of the bible verse</span><span class="text Rom-5-3" id="en-NIV-28051" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;"> </span><span class="versenum" style="box-sizing: border-box; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;"><span style="font-family: Verdana, sans-serif;">Romans 5:3-5 "</span></span><span style="font-family: Verdana, sans-serif;"><b>Not only so, but we also glory in our sufferings,<span class="crossreference" data-cr="#cen-NIV-28051A" data-link="(<a href="#cen-NIV-28051A" title="See cross-reference A">A</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> because we know that suffering produces perseverance;<span style="background-color: white;"> </span></b></span></span><span style="font-family: Verdana, sans-serif;"><b><span class="text Rom-5-4" id="en-NIV-28052" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;">perseverance, character; and character, hope.<span style="background-color: white;"> </span></span><span class="text Rom-5-5" id="en-NIV-28053" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;">And hope<span class="crossreference" data-cr="#cen-NIV-28053C" data-link="(<a href="#cen-NIV-28053C" title="See cross-reference C">C</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> does not put us to shame, because God’s love<span class="crossreference" data-cr="#cen-NIV-28053D" data-link="(<a href="#cen-NIV-28053D" title="See cross-reference D">D</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> has been poured out into our hearts through the Holy Spirit,<span class="crossreference" data-cr="#cen-NIV-28053E" data-link="(<a href="#cen-NIV-28053E" title="See cross-reference E">E</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> who has been given to us.</span></b></span></div>
The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com24tag:blogger.com,1999:blog-2929156501925638565.post-75652376856631057772017-01-17T16:24:00.003-08:002017-01-17T16:24:55.896-08:00Hope<div style="text-align: center;">
<b style="font-family: Verdana, sans-serif;">**TO HELP OUR FAMILY, GO TO WWW.HERETOSERVE.ORG AND CLICK JOIN TO FILL OUT THE REGISTRATION FORM**</b></div>
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<span style="font-family: Verdana, sans-serif;"> As many of you likely saw on Facebook, our little Hazelnut spiked a fever and we were admitted to the hospital last Wednesday evening. This has become a usual pattern with this new treatment, making it very difficult for our family to feel any sense of routine. Thankfully, and I believe because of all of your prayers and support, Hazel felt better than any other visit! Although she did end up contracting C-DIFF once again, she has been powering through and her spirits remain high. She has done so well, in fact, that her counts began to recover faster than ever and we were actually discharged yesterday evening!!! Now we are home, helping her continue to recover, and we start her next round of chemo on January 30th. After this upcoming roound, she will repeat her scans to see if this treatment, and all of the integrative therapies we do at home, continue to shrink these tumors! Tentatively, these scans are slated to happen around February 21st or 22nd.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Now, I do not think it is an accident that our dear girl did better than any other round after receiving our recent hopeful news with the last scans. I have come to realize that HOPE has played, and continues to play an extremely important and pivotal role in Hazel's journey on this arduous road. And to be honest, HOPE is something I have had a difficult time holding onto since her relapse.</span></div>
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<span style="font-family: Verdana, sans-serif;"> I want to take this opportunity to be totally transparent with you. If I choose not to be, I do Hazel, and every other family like ours, an extreme disservice. These children, who are fighting for their lives every day, receiving treatment that is far too toxic for their little bodies, and only get a measly 4% of our national cancer budget, have earned the right for me, and everyone else for that matter, to be completely and wholly honest with the world.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Throughout our fight with childhood cancer, I have had to figure out how to manage a lifelong involvment with depression. Through faith, and HOPE, I was able to manage it fairly well throughout Hazel's first fight with cancer, only having some small dips in the road, but it still being ever-present. Toward the end of treatment and continuing through her 2 1/2 years of clear scans, PTSD reared its ugly head and exacerbated the already underlying depression.</span></div>
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<span style="font-family: Verdana, sans-serif;"> While I should have been at my most joyful, my most thankful, my most hopeful; I had times where I struggled to get out of bed in the morning. And the fear of cancer coming back and tearing my daughter, my family and myself apart once more, was something so palpable, I could hold it in my hands and feel it's effect wash over me like a tidal wave.</span></div>
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<span style="font-family: Verdana, sans-serif;"> I found that giving back to the world of childhood cancer became my purpose, my passion, my therapy. It helped to be able to pull up my boot straps and give cancer a tangible kick in the face by making the world aware of it's hideousness and by raising money to help annihilate it, once and for all.</span></div>
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<span style="font-family: Verdana, sans-serif;"> When Hazel's cancer returned, I was not prepared (but really, who is?)</span></div>
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<span style="font-family: Verdana, sans-serif;"> I walked into those routine scans, with a smidge of confidence for the very first time.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Hazel was stronger and healthier than ever!</span></div>
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<span style="font-family: Verdana, sans-serif;"> Those scans must have been someone else's.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Hazel was 2 1/2 years in the clear, she had to still be clear!</span></div>
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<span style="font-family: Verdana, sans-serif;"> We had invited employees of St. Baldrick's to join us at our appointment to get the good news, and just filmed a video for them celebrating her milestone.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Unfortunately, it was real. It was not a dream, but it was one of my very worst nightmares. </span></div>
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<span style="font-family: Verdana, sans-serif;"> Hazel's cancer was, indeed, back again.</span></div>
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<span style="font-family: Verdana, sans-serif;"> I have been intimately aware of the realities of relapsed Neuroblastoma, losing many friends to it, and fighting it with all I had. So when the news of her relapse became more real with each day, my hope and faith drifted farther and farther away, bottoming out to an all time low.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Facing each treatment felt like I was being pulled deeper and deeper underwater, away from any sign of a rescue boat. The only thing that kept me from drowning was watching how unbelievably brave my daughter, the real champion in this fight, was being while fighting this beast a second time. If she can do this, so can I. But the reality of potentially losing my beautiful, precious baby girl to this monster has been inescapable.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Hazel's follow up scans came during the first treatment we tried. A treatment that was described to me as "the closest thing to a home run in the relapsed Neuroblastoma world". This treatment was the very first semblance of hope that I had since her relapse, so when the scans showed her tumors still progressing while on it, my very little hope was completely shattered.</span></div>
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<span style="font-family: Verdana, sans-serif;"> Switching gears to a therapy that was more targeted for Hazel seemed like the right, and even more hopeful thing to do, but instead of being filled with HOPE, I remained filled with trepidation. I walked into those next set of scans, right before Christmas, hopeless, and begging God to just "show up". </span></div>
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<span style="font-family: Verdana, sans-serif;"> Boy did He! Not only was this treatment working, but our little Hazelnut's tumors showed a significant response! Some are dying, some shrank more than 50%, and I finally felt like we had a fighting chance in this battle. For the first time in months and months, I FELT MY HOPE RESTORED!</span></div>
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<span style="font-family: Verdana, sans-serif;"> This hope ripped a hole in the heavy, dark cloud above my head, and I finally felt the warmth of the sunshine fall upon my face. </span></div>
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<span style="font-family: Verdana, sans-serif;"> I could take a deep breath without heaving. </span></div>
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<span style="font-family: Verdana, sans-serif;"> I could hug my daughter without sobbing.</span></div>
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<span style="font-family: Verdana, sans-serif;"> I could answer the question "How are you?" with an honest "Pretty good!"</span></div>
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<span style="font-family: Verdana, sans-serif;"> So when I say I do not think it was an accident that Hazel recovered this round better than ever, I think it is because it is in direct correlation to me being filled with HOPE once again. I think she could sense a renewed spirit within me, and she herself could be renewed. And I wholeheartedly believe that God knew we all needed a little bit of HOPE, and time home together, and helped her body heal in this miraculous way.</span></div>
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<span style="font-family: Verdana, sans-serif;"> While I found some HOPE to finally hold onto, I still ask for you to pray for me. Pray that I may be helped in my unbelief and doubt. Pray that I can be open and willing to talk about my depression, so I can be led on a path to overcome it. And pray, that despite all of these things, I can remain steadfast and strong for the one who needs me the most; my little Hazelnut. </span></div>
The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com26tag:blogger.com,1999:blog-2929156501925638565.post-35564287767027297322016-12-19T11:06:00.000-08:002017-02-16T15:29:41.502-08:00Unplanned Stays<div style="text-align: center;">
<span style="font-family: "verdana" , sans-serif;"> <b>**TO HELP OUR FAMILY, GO TO WWW.HERETOSERVE.ORG AND CLICK JOIN. FILL OUT THE REGISTRATION FORM AND JOIN HAZEL'S CARE COMMUNITY**</b></span></div>
<span style="font-family: "verdana" , sans-serif;"> Our little Hazelnut is still in the hospital or this unplanned visit. Much like her frontline treatment, Hazel has spiked neutropenic fevers after each round of chemotherapy, sending us to the hospital. This is done to protect her and to keep a watchful eye on her, for when her blood counts are this low, she is in danger of contracting very dangerous illnesses/diseases and even going into sepsis. The doctors put her on doses on antibiotics to protect against these potential risks. However, the antibiotics (even when we have her on a daily probiotic) can wreak havoc on her gut, and can kill all the good bacteria that is used to fight some of these infections, thus allowing some bad bacteria to potentially grow. It is difficult to weigh the risks and benefits to these antibiotics, and to be honest, I am still unsure of the right decision for her. Last time, she ran the course and came out of her neutropenia unscathed. This time, however, she has developed a GI issue called C-DIFF, which causes some pretty extreme diarrhea, and she also has caught a cold. This has made our stay not as easy and has also put us in strict isolation. But true to form, Hazel continues to remain positive and finds the joy in each day (much better than I do, I'll admit). While uncomfortable, these two complications will NOT keep us in the hospital longer, unless more complications arise. However, her counts still remain at zero, so we currently do not have any plans to go home. So please be praying for a miracle to get us home by Christmas!</span><br />
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<span style="font-family: "verdana" , sans-serif;"> Hazel was also to have her scans this Wednesday, to asses this treatment's efficacy. Thankfully, the scans will still be performed, as planned, but we will just be inpatient as we do them. This actually makes things less complicated for me, so I suppose there is a silver lining to be had! Please pray for these results, as we will get them the same or the next day!</span><br />
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<span style="font-family: "verdana" , sans-serif;"> Despite not quite feeling herself, Hazel continues to radiate her God given JOY. She has spent much of our time here thinking about all of the other patients on the floor. She made presents for, gave some of her unopened toys to and wanted to visit and cheer up our roommate (who we shared a room with before we were put in isolation). And she wanted to make every child a handmade star with a heart in the middle and written on it, in her word and handwriting " FOR KIDS AND HOPE". She said, and I quote, "Every kid has to go through treatment, and surgery and stuff. And they don't feel good, so I want to bring them joy." Boy this girl just fills up my heart to the brim! I have really been struggling to find the joy lately, but God is certainly using my own daughter to teach me immeasurable lessons.</span><br />
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<br />The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com8tag:blogger.com,1999:blog-2929156501925638565.post-33659633503842949902016-11-29T10:21:00.000-08:002016-11-29T10:30:20.598-08:00Hair Shaving Party!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;"> Since coming home for Thanksgiving, our little Hazelnut has been doing well. She was very tired for the first few days, but has only been getting better! We had a wonderful time with family this past weekend and were so incredibly thankful to be home. Per her treatment plan, we were supposed to begin her next round of chemotherapy yesterday (11/28), but her counts have still not recovered completely. Her Absolute Neutrophil Count (ANC) should be above 500 to not be considered neutropenic, and a normal range is actually closer to 1500. When her blood was measured yesterday, her ANC was 320. Considering they had been at zero for about two weeks, we are so glad to finally see them climbing upward! However, because they are still under 500, she is still very vulnerable to infections and certainly not strong enough to be knocked down again by chemo. So the doctors and we decided to wait another week to give her time to recover. She will have her next round of chemo beginning on December 5th. This also means, her scans to determine her progress will also be pushed another week, placing them just days before Christmas. My whole heart wishes we will get a Christmas miracle and have good scan results, so please please please be praying!</span></div>
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<span style="font-family: Verdana, sans-serif;"> While this weekend was filled with a lot of family time, we also found that it was time to shave Hazel's head. The chemotherapy has been making her hair come out in droves, and it was beginning to bother Hazel. She actually has been asking to shave it for weeks! She used to love having a bald head and putting fake tattoos all over it, so she has been looking forward to being bald again. Leave it to a beautiful child to have this perspective, right?! We could all learn so much from her! Now, all of our children (except the baby) have been wanting to support their sister in any way that they can. This head shave was no different. They all wanted to stand in solidarity with her and decided to shave (Aaron and I did as well)!!! It was a very powerful, emotionally moving and empowering experience. Here are a few photos from the evening:</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;"><u>Hazel's 7 1/2 year old sister, Elizabeth</u></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Hazel's 10 year old brother, Micah</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;"><u>Our family photo (minus the baby)</u></span></td></tr>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com11tag:blogger.com,1999:blog-2929156501925638565.post-36565061187398984252016-11-22T20:57:00.001-08:002016-11-22T20:57:47.379-08:00New Treatment<span style="font-family: "verdana" , sans-serif;"> On November 8th, Hazel began her new treatment. She now takes a daily pill called Xalkori. This ALK Inhibitor is the targeted therapy that I have discussed before, and targets her ALK tumor mutation. <span style="background-color: white; line-height: 19px;">Common side effects with Xalkori use include </span>upper respiratory infection<span style="background-color: white; line-height: 19px;">, nausea, </span>vomiting<span style="background-color: white; line-height: 19px;">, stomach pain, </span>decreased appetite<span style="background-color: white; line-height: 19px;">, insomnia, dizziness, blurred vision and/or floaters, tired feeling, diarrhea, constipation, rash or itching, cold symptoms (</span>stuffy nose<span style="background-color: white; line-height: 19px;">, sneezing, </span>sore throat<span style="background-color: white; line-height: 19px;">), numbness or tingling, or swelling in your hands or feet. </span></span><span style="font-family: "verdana" , sans-serif;">We have noticed some of these side effects already, and it was difficult for Hazel to adjust at first, but she seems to be adjusting more now and taking it in stride (which breaks my heart to even have to say that!). </span><br />
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<span style="font-family: "verdana" , sans-serif;"> In addition to this daily medication, she began her first cycle of chemotherapy. She receives to different chemotherapies for 5 days in a row (thankfully outpatient), every three weeks. These particular chemos have made her feel pretty nauseous, and she spent quite a few mornings vomiting. We now have her on round the clock nausea meds, and in combination with the cannabis oil and essential oil regimen she is already on, we seem to have it under control. Her hair is also falling out in fairly large clumps, so a head shaving party is in the works!</span><br />
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<span style="font-family: "verdana" , sans-serif;">As expected this treatment has caused our little Hazelnut's blood counts to drop dramatically. As some of you may have seen on Facebook, she spiked a fever after her counts dropped, earning us a spot on the Oncology floor at the hospital last Tuesday. Typically, a fever spikes and it is just indicating that these counts are dropping. However, a fever could also be a sign of an infection and when her counts are zero, she has no immune system to speak of, so an infection can be extremely dangerous. While in the hospital, Hazel receives prophylactic antibiotics to protect her from any potential infection, and her blood is sent for testing to see if anything is indeed growing. So far, she has had no signs of infection, so for that we are thankful!</span><br />
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<span style="font-family: "verdana" , sans-serif;"> Currently, we are STILL inpatient, not because of any infection, but because her counts have remained at ZERO! We cannot be discharged until her counts begin an upward trend and get closer to a safe range (her Absolute Neutrophil Count or ANC needs to be close to 500 or above). Last week she spent much of her days in bed, feeling tired and unwell. However, since this weekend, she has felt much better, and has spent absolutely NO time in bed! She has been playing, having dance parties, doing crafts and school work, and eating up a storm! So for being stuck as long as we have, we can still rejoice in her feeling well! A verse that someone shared with me recently has spoken volumes these past weeks. </span><b><span style="font-family: "verdana" , sans-serif;">Lamentations 3:22-23 "</span></b><span style="font-family: "verdana" , sans-serif;"><b style="color: #333333; line-height: 28px;"> <span class="verse-22" style="box-sizing: border-box;">Because of the LORD’s great love we are not consumed, for his compassions never fail. </span></b><b style="color: #333333; line-height: 28px;"> <span class="verse-23" style="box-sizing: border-box;">They are new every morning; great is your faithfulness."</span></b></span><br />
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<span style="color: #333333; font-family: "verdana" , sans-serif;"><span style="line-height: 28px;"> Please be praying for our Hazel's counts to recover in these next days so that we may be home for Thanksgiving. We have been in the hospital for many special occasions and holidays before, and it is not easy to be separated. Not only on Hazel, but on our other children and on both Aaron and I. Pray that this verse can ring truth into our lives, that we may not be consumed by the stress and the difficulty of what we are going through, but instead rely on His compassion and faithfulness. </span></span><br />
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com8tag:blogger.com,1999:blog-2929156501925638565.post-41481419500753202292016-10-28T10:46:00.000-07:002016-10-28T13:05:10.509-07:00Update and Scan Results<div class="" data-block="true" data-editor="dqdma" data-offset-key="18ttv-0-0" style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">
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<span data-offset-key="18ttv-0-0">Hazel finished her third round of treatment, and it went very well! She felt felt pretty good the whole time, and even spent quite a bit of time up and out of bed. After coming home, she felt pretty tired and nauseous for a few days, but bounced back very quickly. She has been going to school, the pumpkin patch, sleep overs and play dates, celebrated both of her brothers' birthdays, lost another tooth, and has just spent time enjoying being a kid! Im so thankful for such gloriously normal time, especially leading up to her scans.</span></div>
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<span data-offset-key="18ttv-0-0">Now the scan results:</span><br />
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<span data-offset-key="18ttv-0-0">The scans have shown that the treatment is not working and the tumors have grown....Good news is that they have only grown a very little bit and the doctor believes the tumors are not very aggressive. The treatment probably worked in the beginning, but the cancer has already figured out a way to overcome it. It is probably helping to slow the growth, but this is just not enough. We want the cancer to be disappearing, not inching forward!! </span><br />
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<span data-offset-key="3b74k-0-0">So we are switching gears. Hazel will begin a new therapy that involves a targeted inhibitor for her ALK mutation, paired with two types of chemotherapy. The nice thing is that the ALK inhibitor is a pill to be taken twice a day, at home; and the chemo is every three weeks, for four days, and administered outpatient! The tough thing is that this chemo has a higher toxicity level. So she will indeed lose her hair, feel more unwell, and will become immune suppressed (causing more unplanned hospital stays and being less likely to go to school). They want to give her the next week off, feeling she is stable and strong, and then begin treatment the following week. We also will still continue with all of the complimentary and natural therapies we implement at home. We are literally trying everything we can!</span></div>
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<span data-offset-key="18ttv-0-0">The doctor is still remaining hopeful, because even though the treatment we all thought would work best, has not worked, we are not yet out of options. Not only are we not out of options, but the options we have left are still promising. </span>Hazel's genetic testing of her tumor came back, and it actually has a couple of different mutations that have targeted therapy. The ALK mutation, has the targeted therapy that is currently in use; and another drug, that is even more promising, that should be approved in the beginning of the year. If the one we try next doe not work, our hope is that she can remain stable enough to try the next one in the new year. The doctor said we have a bag full of keys, and one lock. We just need to find the right key. My worry is that because relapsed Neuroblastoma is so unbelievably tricky and clever, we may not have the right key at all. So please be praying that we find the right key!!!! Thankfully, because her tumors are not aggressive right now, we still have time to try and figure it all out.<br />
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To be honest, we were very disappointed to hear this news, but the more we spoke to the doctor and with each other, the more hope we are beginning to feel. We are still scared, unsure and overwhelmed, but we still have hope! And the bible says in <b>HEBREWS 6:19 (the bible verse on our Hope for Hazel shirts) "We have this hope as an anchor of the soul. Firm and secure". </b>So please be praying for our family that we can continue to cling to this hope and begin to feel the peace only God can give. </div>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com26tag:blogger.com,1999:blog-2929156501925638565.post-23930522869064026032016-10-10T21:40:00.000-07:002016-10-10T21:40:47.680-07:00Scan Results<span style="font-family: Verdana, sans-serif;"> Today was a very long day for Hazel and I. We checked in early this morning for scans, which is a very long process. She did not finish waking up from sedation until about 2:30pm. Then we met with the doctor around 3:30pm to go over results, and then we were sent to get her first dose of her next round of treatment in the infusion center. We finished this process at around 8:00pm so they decided to just admit us onto the oncology floor instead of having us check back in tomorrow morning. We finally just got settled, so I can now fill you all in on the results.</span><br />
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<span style="font-family: Verdana, sans-serif;"> First of all, Hazel's bone marrow biopsies came back clear! So this means that the cancer has still not spread to her bone marrow! Her scans, however were not as obvious.</span><br />
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<span style="font-family: Verdana, sans-serif;"> The results of her scans are actually a bit complicated and convoluted. But after much discussion and deliberation with her doctor it boils down to this: Her scans have changed since the last set of scans, but it is too difficult to tell if these changes are positive or negative. The spot in her neck grew larger, but looks like it is not lighting up as much, and even appears that it may be dying from the inside out (but this may not be the case). The other spot(s) in her abdomen are slightly smaller, but are lighting up brighter. </span><br />
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<span style="font-family: Verdana, sans-serif;"> Unfortunately, the way that PET scans determine uptake, does not actually reflect Neuroblastoma very accurately. So, these brighter spots could just be brighter because of inflammation, or indicating the immunotherapy is doing it's job. But it could also indicate that her cancer is becoming more active. It is not usual for a Neuroblastoma patient to receive regular PET scans for this reason. Usually, children receive MIBG scans. These scans are Neuroblastoma specific, and only light up if there are Neuroblastoma cells, and not for any other reason (with the exception being scar tissue related to previous Neuroblastoma spots). Hazel did not receive the MIBG scan this time because the one she received in August did not light up, when the PET scan did. The doctor does not really like doing PET scans because it does not give her the information she is really looking for, however, we needed to do these as a comparison. Unfortunately, the results were so mixed that it did not give us an accurate comparison.</span><br />
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<span style="font-family: Verdana, sans-serif;"> So we had to spend much time discussing whether or not to proceed with the current treatment Hazel is on, or to try something different. Most kids who respond to this treatment, do so fairly quickly, so the doctor is concerned that she did not show a very overwhelmingly positive response. So her first thought was that this may not be working, so we should move on. But again, with the PET scan not giving us the most accurate data, we may not really know if she has responded or not. So we have decided to do one more round of this chemo/immunotherapy combo this week, and in two weeks have her do an MIBG scan. The hope is that the original MIBG scan did not light up because we were so early in Hazel's relapse, and that it has been long enough for it to show up. So maybe we can get a better idea of what is going on in there.</span><br />
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<span style="font-family: Verdana, sans-serif;"> This does, however present us with a couple of dilemmas. The first is that we are continuing a treatment that may not be effective for her, which, in turn would only be allowing this cancer to grow these next two weeks. I pray that this is not the case, but if it is, we will move onto something new immediately. More than likely, it will be the directed therapy for her ALK mutation. The second, is that this is working, but her new tumors are no longer MIBG avid and will not light up on the MIBG scan either way. If this is the case, we will do another PET scan to see if we can see any changes from these last two scans. Both the PET and the MIBG scans are also done with CT scans, which is the scan that gives us our measurements, but does not measure cancer activity. So we will still get measurement comparisons with both scans, which is good. </span><br />
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<span style="font-family: Verdana, sans-serif;"> As you can see, we got a lot of complicated information today, and I didn't even share all of it. My brain is on overload now, and I am in a bit of a fog, so I hope that this is clear enough for you. But really, all I need to make clear is that our little Hazelnut still desperately needs your support and your prayers as we continue treatment, trying to make the best decisions, and follow this disease closely. </span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com13tag:blogger.com,1999:blog-2929156501925638565.post-44051607584168350212016-10-04T00:00:00.000-07:002016-10-04T00:00:49.029-07:00CYCLE #2 DONE<span style="font-family: Verdana, sans-serif;"> I have been meaning to post this update on how our little Hazelnut coped with her second round of treatment, but to be honest, I have just not had the strength. Not because Hazel struggled through treatment. In fact, she did remarkably well! Her pain and itchiness was so well managed, that she did not complain one bit. Besides being run down, she felt fairly well! She even got out of bed every day! </span><br />
<span style="font-family: Verdana, sans-serif;"> I have just not had the strength because our week being home has been exceedingly overwhelming. Our first few days are generally difficult, because Hazel doesn't quite feel herself yet, and I have to transition to being a mom of one, focused on just one thing, the care of my daughter; to full time homemaker, mother of five, wife, chauffeur, housekeeper, meal arranger and preparer, etc, etc... I have found that, so far, these transitions have not been easy ones for me. However, I also find myself being immensely thankful for just being home. It can sometimes be a battle in my mind over which emotions win. Then, Hazel developed a cold (not really a big deal), but also mentioned to me that a molar was loose. Not just any molar, but one of the molars that was crowned due to deterioration from prior treatment. So after meeting with the dentist, we discovered that her tooth was infected, and we needed to have X-Rays done to see how to proceed. The X-Rays confirmed that her tooth is beyond repair and will need to be extracted. Just one more thing to schedule and to worry about, and for my little Hazelnut to cope with. On this very same day, Hazel spiked a fever of over 101.3 degrees fahrenheit, which in the cancer world, earns you a coveted spot in the Emergency Room and CHLA. We spent the whole night there. Thankfully, her labs came back and all her numbers were within normal and safe range. They gave her a dose of antibiotics and sent us home at 4:00 in the morning. So, needless to say, our week at home was not uneventful! Despite the fevers, infection, long appointments and fatigue, Hazel still bounced back very quickly and showed us all that she's got this! She even got to go to school on Friday!</span><br />
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<span style="font-family: Verdana, sans-serif;"> In addition to all the happenings going on with Hazel, our Neuroblastoma community lost two children this past week, both of whom I either knew personally, or followed very closely and became friendly online. On Friday, I attended the funeral for one of these children, Eli Gradon. Eli was a remarkable young man, with an equally remarkable family and community. His father Mark, always by his side, never failed to be there for every other Neuroblastoma family he knew and saw at the hospital. Just such a gracious and kind human being. While difficult, there was something that happened at the funeral that just struck me. During his speech, Mark spent almost the entire time giving his heartfelt thanks and gratitude to those who helped his family. Then, at the end, he mentioned several cancer fighters by name who are still in the fight, including our Hazel. He said that they will continue to fight in honor of their son, and in honor of our children, so that that can be healed once and for all. This right here. This is our community. A father, bereaved by the loss of his son just the morning before, standing in solidarity with other families so we don't lose hope. Mark, if you are reading this; thank you. Thank you for being you, and for sharing your son and your family with all of us. Thank you for speaking healing for my daughter. Thank you for not giving up the fight. We love you.</span><br />
<span style="font-family: Verdana, sans-serif;"> I also have been struggling with anxiety because Hazel's doctors have scheduled her first scans to see if the treatment is working, and they are scheduled for <b>TOMORROW. </b>I would have liked to have included you all in on this detail sooner, but as I said before, I just could not sit down to write. My brain was not connected to my hands this week. Hazel will also meet with the dentist at CHLA and receive a bone marrow biopsy(on Wednesday). Hopefully we will have results to share on late Tuesday or Wednesday. If not, we meet with her doctor on Monday afternoon, right before beginning her next cycle of treatment that evening.</span><br />
<span style="font-family: Verdana, sans-serif;"> So please be thinking about and praying for Hazel and our family throughout the rest of this week. Pray for good results from these scans. We want to see this cancer already melting away! </span>The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com8tag:blogger.com,1999:blog-2929156501925638565.post-14956892141256755362016-09-10T09:28:00.001-07:002016-09-10T09:28:49.658-07:00CYCLE #1 DONE!<span style="font-family: "verdana" , sans-serif;"> I truly cannot believe that our little Hazelnut has already completed her first round of treatment for relapsed Neuroblastoma. Mostly, it all just feels so surreal, but in other ways it feels all too familiar. Checking back into the hospital, I found my brain jumped right into the fight as if we never even took a break. I remember telling my husband that it seemed like we were just in treatment and we were back for another round. But then there were other moments when I was sitting alone and memories of the past, cancer free, two year flooded my mind, and being there became so overwhelming. It was comforting though, for both Hazel and I, to see so many comforting and familiar faces in our friends, nurses and doctors. We all kept saying, "It is so good to see you, but just not under these circumstances". </span><br />
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<span style="font-family: "verdana" , sans-serif;"> While it was difficult being back there, Hazel did everything like a champion! In fact, she was counting down the days until her return. Since we spent so much time at the hospital when she was younger, I believe it felt like returning to her second home. She kept talking about her "own room with her own TV", going on her "pole rides", and the amazing "play room". And what child in a family of 7 wouldn't like to have Mommy'a undivided attention and days where people bring gifts and surprises all the time?! I am so thankful that Hazel does not associate feeling poorly, and her difficult experiences with being at the hospital. Even this time, when treatment made her feel so bad, she still did not want to leave come Saturday. Leave it to a child to face these circumstances in this way. Just like the St. Baldrick's Foundation's new Childhood Cancer Campaign says, KIDS ARE GOLD!</span><br />
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<span style="font-family: "verdana" , sans-serif;"> As I said, treatment this first week was very difficult for Hazel. The chemo causes nausea and diarrhea, and the immunotherapy causes, in her, extreme pain and itching, and gives her a fever (she was fighting a 103 degree fever most of the week. So not only do they have chemo and immunotherapy running, but they also have her on a continuous drip of pain medication, anti itch medication, around the clock anti nausea medication, Benadryl and Tylenol. One of the chemotherapies she has to take by mouth, as well as the Tylenol (every 4 hours), and an antibiotic to help with the diarrhea. It was very difficult for her because it took us three days to find all the right combinations and timings of the medication to make her comfortable, so she spent those first days in such misery, telling us that what we were doing was not working. Even thought she was miserable and frustrated, she still remained so unbelievably brave and agreed to everything. She slept for a lot of the hours, so that also helped. Your prayers and good thoughts were definitely felt and clearly abounded in that room. </span><br />
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<span style="font-family: "verdana" , sans-serif;">After coming home from a week of difficult treatment, and not eating, Hazel was very tired and not very hungry. It took her a few days to recover and begin eating again, but thankfully, side effects have remained very minimal! Las time she was in treatment, Hazel felt very unwell from the chemo, and we were back in the hospital for days and weeks at a time dealing with low blood counts and troubling side effects. Hazel has felt so well this week, that she even returned to school a few days! Her labs were drawn on Thursday, where she had her very first port access while awake. Although very nervous about it, she did it so bravely, and it went extremely well! I was concerned to get the results because low blood counts would mean no school and back to the hospital for us, but they came back and were great! Since her counts have not dropped yet, it is highly unlikely that they well, since her body should just continue to recover. So that means we get a full two weeks at home between treatments with our little Hazelnut feeling well! THANK YOU GOD FOR HOLDING OUR DAUGHTER IN YOUR HANDS!!!</span></div>
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<span style="font-family: "verdana" , sans-serif;"> I know I have stated before that a post is coming about how you can specifically be praying for us, and I promise it still is. However, our big fundraiser, The Ever After Ball is tonight, so with coming home and figuring out our new normal, and getting ready for this event, I have just been so busy! It will come though :) Also, many of you have been asking about sending cards and gifts to Hazel. We have opened a PO BOX just for this very reason, and we would be happy to hear from you all. I just ask that you do not send too many toys, because with five children we not only have enough already, it would also not be fair to her siblings. Hazel, however, loves receiving cards, stickers, headbands/hats, nail polish, and things of that nature. Please send mail to:</span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Hazel Hammersley</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>PO BOX 2001</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Simi Valley, CA 93062</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b> </b>Here are other ways to help our family as well:</span></div>
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<li><span style="font-family: "verdana" , sans-serif;">Sign up on our care community! Here you find a list of our needs and a calendar with specific tasks you can sign up for. Just go to <a href="http://www.heretoserve.org/">www.heretoserve.org</a> and click JOIN. When filling out the registration form, be sure to indicate you want to help Hazel. An email will be sent to you for you to join us!</span></li>
<li><span style="font-family: "verdana" , sans-serif;">Donate to our family! Go to <a href="http://www.talbertfamilyfoundation.org/pages/Hazel.html">www.talbertfamilyfoundation.org/pages/Hazel.html</a></span></li>
<li><span style="font-family: "verdana" , sans-serif;">Buy a HOPE FOR HAZEL bracelet and stand in solidarity with our family. They are $5 a bracelet, and we have sizes Regular and Small (I wear the small). To do so, either send a self addressed, stamped envelope to our PO BOX along with a note indicating how many bracelets you would like and in what size; or go to our donation page link above, select your donation amount, and in the "GIFT INFORMATION" section, indicate how many bracelets and what sizes.</span></li>
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<span style="font-family: Verdana, sans-serif;"><b><span style="background-color: white; font-size: 16px; line-height: 24px;">Hebrews 6:19 "This hope we have as an anchor of the soul, </span><i class="trans-change" style="background-color: white; box-sizing: border-box; font-size: 16px; line-height: 24px;">a hope</i><span style="background-color: white; font-size: 16px; line-height: 24px;"> both sure and stedfast and entering into that which is within the veil"</span></b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com7tag:blogger.com,1999:blog-2929156501925638565.post-72184633035891295112016-08-29T16:03:00.000-07:002016-08-29T16:03:27.961-07:00Treatment<span style="font-family: "verdana" , sans-serif;">Today is the day that our new normal begins.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Today, we made our final decision and had a double port (which solved our dilemma!) placed inside our daughter.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Today is the first day of a new treatment protocol that has no protocol.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Today is the day that our brave little Hazelnut begins her fight against cancer for the second time.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Today, chemo has already begun.</span></div>
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<span style="font-family: "verdana" , sans-serif;">At this very moment, I am sitting next to my beautiful daughter as her first dose of chemo flows through her veins. To be honest, I am heartbroken, terrified, anxious and in utter disbelief. This all still feels so absolutely unreal. </span><br />
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<span style="font-family: "verdana" , sans-serif;">While I cope with this surreal moment, I figured I would take another one to update all of you. We spoke with the doctor last week to discuss Hazel's "treatment plan". As some of you may know, when a child is first diagnosed with cancer, the doctor gives the family a treatment protocol, or what we like to call a "roadmap". When a child relapses, this is not the case, so I use the term "treatment plan" fairly loosely. Many times, children who relapse do not respond to the first form of treatment, so many different options are tried. I like to describe it like this: The cancer comes back, so you throw everything you know of at it and hope something sticks. </span></div>
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<span style="font-family: "verdana" , sans-serif;">So right now, we are throwing our first punch with the new treatment of Immunotherapy and Chemotherapy together that I have detailed before. The doctor actually seemed slightly optimistic, which is not generally the attitude towards relapsed Neuroblastoma. She has seen very promising results recently, and has hope that Hazel will respond favorably. We will do this treatment inpatient this week, then again three weeks from now. Once that second round is finished, Hazel will have another round of scans to see how she is responding (which will fall sometime at the end of September). If she is responding, then it will be very good news, and we will continue on the same protocol with the hope that it will just melt this cancer away. If she remains stable, we will, more than likely, continue with the protocol and reassess at the next round of scans. If she has progressed, then we move onto our next line of defense, which in our case will be the targeted therapy for her ALK mutation. We will continue with this wait and see approach, and change our course if necessary until we bury this thing in the ground!</span></div>
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<span style="font-family: "verdana" , sans-serif;">Many families have contacted me saying that their children have done very well on this treatment, and even get to stay home the whole two weeks between cycles with very little side effects. So it is my hope that we can have some sense of normalcy in between. However, it is still very possible that the treatment takes a toll on her and we end up back here more often than we would like. So please be praying that this does not happen. </span><span style="font-family: "verdana" , sans-serif;">As we get more settled in our room this week, I will write the post I have been planning that details how you can specifically be praying for us and helping our family during this time. For now, just pray that this treatment, and the supplemental things we are doing at home will all work together over the course of the next few weeks and do what Hazel wants it to do and "kick this cancer in the butt!".</span></div>
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com11tag:blogger.com,1999:blog-2929156501925638565.post-49234009331220822922016-08-24T16:22:00.001-07:002016-08-24T16:29:23.651-07:00Biopsy Results<span style="font-family: "verdana" , sans-serif;"></span><br />
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<span style="font-family: "verdana" , sans-serif;"> We just heard from the doctor, and the pathology has confirmed what we expected, but still our worst fear, that these spots are indeed relapsed Neuroblastoma. Although very difficult news to swallow, it feel relieving to finally just have the answer so we may move forward, prepared to fight for our little Hazelnut's life. Her bone marrow biopsy procedure was two fold: a bone marrow aspirate and a bone marrow biopsy. The pathology is still pending on the biopsy, but the aspirate is totally clear of cancer cells! So we are hopeful the biopsy will also come back negative. Bone marrow is the most difficult place to treat with Neuroblastoma, so we are glad at this news because it means that she just has one more thing working in her favor.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> Now that we have this information, we meet with the oncologist tomorrow afternoon to go over treatment protocol and sign consent forms. We will then have a better idea of what the next few months will look like for our family. What we do know now, is that her inpatient treatments will come every three weeks, and then we are hopefully home for the two weeks in between. </span><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;">But that will all be dependent on how Hazel's body tolerates the treatment. Last time, we were in the hospital with low counts and fevers in between every single treatment, and it was very difficult on all of us. </span><span style="font-family: "verdana" , sans-serif;"> These treatments will begin next Monday, August 29th. She will have her port/line placed that very morning, and will receive chemo just hours later. We are still trying to make our decision on what line to choose, but our hearts, and Hazel's are leaning more towards the port. She said, "I think I made my decision. I will deal with the pokey's because I really want to go swimming.". And since we will never have an idea how long her treatment may take, we think this is the best decision for her. If she were to have a line, that would be an indefinite amount of time that we would be taking away one of her most favorite things, and we do not think it would be fair to do that. We will continue to pray about it, and we will assess once she begins treatment, if it was, in fact, the right decision.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> Many of you have asked how you can help our family, and we have several ways for you to do that. </span><br />
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<li><span style="font-family: "verdana" , sans-serif;">First, is to be praying! I will write a post later this week or next on how you can specifically be praying, but I am just too emotionally and physically drained to do that now. </span></li>
<li><span style="font-family: "verdana" , sans-serif;">Second, is to make a donation to our family. You can do that through the wonderful Talbert Family Foundation at <a href="http://www.talbertfamilyfoundation.org/pages/Hazel.html">www.talbertfamilyfoundation.org/pages/Hazel.html</a></span></li>
<li><span style="font-family: "verdana" , sans-serif;">Third is to sign up on our Care Community so you can check our calendar and list of needs so you can see exactly how to help us in the best way. To do so, please go to <a href="http://www.heretoserve.org/">www.heretoserve.org</a><span style="background-color: white; color: #1d2129; line-height: 19.32px;"> and click on the JOIN button and fill out the registration form. Be sure to say it is Hazel Hammersley when they ask who you would like to help. You will receive a confirmation email immediately that confirms your registration was received. Within 24 hours you will receive another email with link to Hazel's Care Community! Use the link to set up your own personal login in and password to Hazel's Care Community.</span></span></li>
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<span style="color: #1d2129; font-family: "verdana" , sans-serif;"><span style="line-height: 19.32px;"> Thank you all so much for your support these past days. Knowing we have an army behind us and around us has given us all the strength to keep pressing forward. As before, continue to check back here for updates, and follow along in the Care Community to see if our needs change. As for now, let me leave you with this: Hazel is feeling very well, and even with the knowledge that her cancer has returned, she continues her life as a spunky, lively and loving 5 year old little girl. She has LOVED every single day of Kindergarten, she has spent many hours playing with her siblings and friends, and is showing so much determination to kick this cancer like she did the first time!</span></span><br />
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The Hammersley Familyhttp://www.blogger.com/profile/08621892862075899274noreply@blogger.com18