tag:blogger.com,1999:blog-58451956376035372632024-03-15T20:09:51.661-05:002 Kids, a Mini Van and a MortgageKatehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.comBlogger1132125tag:blogger.com,1999:blog-5845195637603537263.post-24019513669816491072019-05-25T22:19:00.001-05:002019-05-25T22:19:18.354-05:00<br />
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It’s been quite a while since I’ve posted. 2016 to be exact. So much life has been lived since that time. Remission, middle school, high school, building a new house, a new puppy, baby Jack no longer a baby, double Cochlear implants, horse therapy, drivers license, and most recently a major reconstructive foot surgery. It makes me tired just talking about it. </center>
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Right after Lucy was born I started my blog as a family scrapbook. After Lucy was diagnosed, this space became a safe place for me. It was a place where I could go and say all the things I was feeling or thinking. Often the words flowed almost as quickly as the tears. So many people decided to read along each day and I will forever be grateful for that. I truly believe that it was the prayers of so many readers that brought us through some very hard days. </center>
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Coming back to this safe space has been quite a journey. It’s been since that post in 2016 that I’ve even opened this page. I’ve often wanted to write but I just couldn’t. And who knows? Maybe I won’t visit this page for another 3 years, but I’d like to think I will. </center>
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Our family has changed in so many ways. Each child has reached amazing milestones and continue to make my heart swell with pride. For kids who have been through hell and back, they sure are rocking life. Erik and I have faired pretty well, too. Our priorities as parents have changed and that has helped us keep our crazy ship afloat. Home life is challenging when you parent a child with special needs, and I promise its not near as easy as most families make it appear. Our household would not function without us working as a team, as every day presents its own challenges. </center>
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There are so many things that I want to share; so many milestones I want to remember. There are parts of Lucy’s (and our family’s) story that deserve to be told. Beating cancer was a major victory, but life since then has been hard. There are still many tears shed and lots of questions still being asked. We were given a “new” child at the age of 6 that we had to learn to parent. We also had to figure out how to parent the siblings of that very special 6 year old. Some days are better than others, but I think we are doing pretty darn good! </center>
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For anyone out there that still may read this, “Thank You!” Thank you for loving our family through this crazy thing called social media. Thank you for praying for us. I’d love it if you still would. Hopefully over then next weeks/months I’ll be able to go back and recap life over the past 3 years. It’s been a wild ride for sure!</center>
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com81tag:blogger.com,1999:blog-5845195637603537263.post-5465188687491819422016-12-06T21:36:00.001-06:002016-12-06T21:36:39.318-06:00It's Been a WhileWell, hello to anyone who might still be out there. It's been a while. I wanted to share an update with you all of Lucy and our family. I hope this will give you all encouragement and will serve as a huge THANK YOU for the years and years of prayers for our family. <br />
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Lucy is doing well. In about 4 months she will have her last set of scans before she will be in remission. 72 months! Can you believe it? When I stop and think about where we were and where we are now I just stand in amazement. Lucy still has challenges, as she will for the rest of her life. She has lost all hearing in her left ear and she has lost most of her hearing in her right ear. With a hearing aid she can function well. She does have sudden onset hearing loss occurrences and we don't know why. We have to get her to the doctor and start her on a steroid regimin within 24 hours of the onset. Its extremely frustrating and "I don't know why" is an unwelcome response. <br />
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School continues to be a daily challenge but in true Lucy style she rocks it every day. She works harder than any other child I know and I am so very proud of her. It takes all hands on deck with her learning but we are surrounded by an amazing team. God put us in the perfect place for what He knew our life would demand. <br />
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Here is a video we just did for our annual Go Lucy Go Dinner and Auction. I hope you will enjoy it. It's fairly emotional for me but it sure does tell a great story. Maybe I'll be able to write a little more often. It's nice being back :)</div>
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<a href="https://vimeo.com/192568715">GLG Dinner Video</a> from <a href="https://vimeo.com/wanderlustvideoprod">Sarah Villane</a> on <a href="https://vimeo.com/">Vimeo</a>.<br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com79tag:blogger.com,1999:blog-5845195637603537263.post-23113010260859729412016-04-22T22:34:00.004-05:002016-04-22T22:34:58.210-05:00Jail Break<div style="text-align: center;">
In a crazy turn of events, I'm happy to say WE ARE HOME! </div>
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It's amazing what a well timed phone call and some college courses in persuasive arguments can do when you are in the hospital. </div>
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Home. It's such a great place to be. </div>
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In between PICC line placements and Track and Field meets I did my best to be mom to all as Erik was father to all. We don't do many things well, but sometimes-just sometimes-we get this family thing right. </div>
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The PICC line took longer than expected so as Erik and I impatiently waited to see our baby we were getting location updates from Ella. Counting down the minutes until her first event, I was able to kiss Lucy's forehead as she was still recovering from surgery and then drove as fast as the law allowed to Ella's meet. Thankfully, I made it in time for her 3rd long jump turn.</div>
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And Jack, well don't worry about him. He was entertained by my father and his cousin Maddie. </div>
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For tonight, all is well. </div>
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com31tag:blogger.com,1999:blog-5845195637603537263.post-64819950983995125402016-04-21T21:50:00.001-05:002016-04-21T21:50:25.430-05:00Unfortunate Familiar Faces (hospital)<div class="separator" style="clear: both; text-align: center;">
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It's been such a long time since I've been able to pull up this page. Every day I think of things I want to say or things I'd like to share, but the force that keeps me from opening the computer is strong. Maybe its enemy warfare or maybe its just a general anxiety attached to this precious outlet I had for years. Either way, I'm writing today and from a very unfortunate, familiar place. <br />
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Room 710. A room we've seen before, a place we know like a grandmother's home. LeBonheur's Neuro floor. Lucy is fine but gave us quite the scare this week. On Sunday she slept all day and started to run a high fever. The next morning she was admitted for dehydration. Due to her crazy medical history she was to be monitored closely, which turned out to be a blessing. After being at the hospital for several hours Lucy had a large seizure followed by 3 more over the next 30 minutes. <br />
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She stayed in the ICU for a day and a half and now we have made our home back on familiar ground. It doesn't look as if we will be leaving any time soon, much to all of our disappointment. We are praying that if all cultures and tests come back negative she may get to come home next Tuesday. The task for Infectious Disease is to determine what happened, why, what medicine to continue and its dosing and duration. No small feat when you have very little information to work with. <br />
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I have to tell you its a bit surreal to be back up here as a patient. I am here quite often as an ambassador for the Go Lucy Go Foundation. We serve meals, we provide financial assistance to families and I work as a mentor. But being back on this side of the door is different. And its hard. <br />
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I kind of wonder if God wasn't making sure I never forget what its like to walk the halls as a worried mother. I've been reminded that families are hurting, they are scared and they are in need. The feelings of all those first days so many years ago haunted me as I walked the halls last night. <br />
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Lucy even had to take advantage of the clothes closet that Go Lucy Go keeps stocked. Thank goodness we bought all those like girls undies!<br />
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For those of you who still follow Lucy's story and have waited on an update, I apologize. I'd give an excuse but I don't really have one. All I can say is that opening the computer is just hard.<br />
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I would, however, like to invite you to help us continue our work at this amazing hospital. If you are so inclined, it would be amazing if you would sign up as a Spirit Runner for the 6th Annual Go Lucy Go 5k/10k. With your Spirit Runner registration you will get a t-shirt mailed to you! If you are local, there is still time to register to run or walk in the race. Here is our t-shirt this year (we kind of love it!)<br />
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All of this can be done on our NEW website. Go check it out! <a href="http://golucygo.org/">golucygo.org</a><br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com69tag:blogger.com,1999:blog-5845195637603537263.post-53488637972736118082016-02-14T20:44:00.001-06:002016-02-14T20:44:59.762-06:00Love Day<div class="separator" style="clear: both; text-align: center;">
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It's been quite a roller coaster at the Krull house as we have been fighting the battle of the ears. I am very happy to report that Lucy is responding well to steroids and her hearing is almost back to where it was. Where is was wasn't perfect but it sure is better than no hearing at all. Where she was/is now is almost completely correctable with a hearing aid. The left ear, as we now have confirmed, was damaged beyond repair from radiation. That's OK as long as we keep the right ear event free. </div>
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In between multiple doctor appointments this week we were able to serve Valentine's dinner to the Neuro floors at LeBonheur Children's Hospital. Our Go Lucy Go money was hard at work. We fed more than 90 meals and awarded $3500 in financial aid. I can't tell you how rewarding it is to meet with families whose children are fighting for their lives. The determination, the sense of urgency, the raw emotions and limitless faith of moms and dads in fight mode is more than inspiring. </div>
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Go Lucy Go has a big announcement to make. The lady below is Stacey and she is our new Executive Director. I am elated to have her help and I believe that God answered our prayers when we asked for assistance. We believe that God ordained the work of Go Lucy Go from the beginning of our journey. From the very first days after Lucy's diagnosis it was evident that a true need existed in the hospital. We immediately jumped into action by sharing the gifts we were so abundantly given. It was a natural reaction to our horrible situation. <br />
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For 4 years Erik and I have done the best we could with Go Lucy Go while being parents, spouses, church members, school leaders and community members. Unless you've walked in the shoes, life after cancer is one you just can't imagine. The daily stress level that we live with is, honestly, quite unhealthy. To be perfectly clear, we would live with 5x the amount of stress as long as our family is all together. Reaching out and asking for help was the result of a spiritual battle between me, God and the enemy. I didn't want to let go but I knew there was so much more purpose and potential for Go Lucy Go than I could manage. Living in "that" moment everyday-the moment that led us to founding Go Lucy Go-was tearing me down. <br />
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Stacey has come along side of us, handling the day to day duties and the organizational component of the job. She has a ton of great ideas and you'll be hearing and seeing a lot of exciting things from Go Lucy Go in the months to come. We, in turn, are relieved of the daily stress which allows us to mentor families and be the servants that God called us to be. I am grateful and continue to stand in awe of God's provisions for our family. Thank you all for your continued support. <br />
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Happy Valentine's Day from us to you!</div>
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com34tag:blogger.com,1999:blog-5845195637603537263.post-29423478904705159072016-02-04T14:48:00.001-06:002016-02-04T14:48:31.345-06:00Surgery Update<div>Hi friends. Thank you all for storming the gates for us today. God must have heard all the prayers for protection and discernment because Lucy's surgery was postponed. When the doctor heard about the rapid onset hearing loss in her "good" ear he ordered an audio gram. What showed was nerve damage and that's not good. Lucy will be on a week of high dose steroids followed by an MRI next Friday. We will assess the situation at that point and figure out how to proceed. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIitQcIhwxvAiIXIimEqUT46QNjLx2f5mtPaEc0MaBsGLYrSpI961hORtyeNi_N6mswQnU8ryBU8j20VZSXfEtxdaZiUazOHFwd3b9FstF0Te64V_k2IYX-70PKGR2Zy2NOFh0gPqreTs/s640/blogger-image-1313123094.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIitQcIhwxvAiIXIimEqUT46QNjLx2f5mtPaEc0MaBsGLYrSpI961hORtyeNi_N6mswQnU8ryBU8j20VZSXfEtxdaZiUazOHFwd3b9FstF0Te64V_k2IYX-70PKGR2Zy2NOFh0gPqreTs/s640/blogger-image-1313123094.jpg"></a></div> This is Lucy being "totally over it."</div><div><br></div><div>I appreciate the doctor being cautious as Lucy's hearing is in the balance. Please pray that the issue is vascular and will respond to steroid treatment. The second prayer would be that if the damage/loss is permanent God would make provisions for hearing in other forms. </div><div><br></div><div>Third, please pray for Lucy. She is frightened, frustrated and confused. She went to bed Tuesday night being able to hear (with a hearing aid) almost perfectly in one ear. She woke up almost completely deaf. This has been very hard on her and she's just been through so much in her short 9 years. </div><div><br></div><div>Thank you all for your love and support.</div>Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com56tag:blogger.com,1999:blog-5845195637603537263.post-23545419362169185702016-02-03T22:17:00.002-06:002016-02-03T22:17:20.763-06:00Ears and Determination<div class="separator" style="clear: both; text-align: center;">
"Father fill my EARS with your beautiful love song and </div>
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soothe my heart with your comforting words." Tracie Miles</div>
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When Lucy was really sick I was able to write often. It was such a sweet respite from the numbness of the hospital room. Now, when I have time to sit and write (which is virtually never,) it seems again like a respite from life. It's a small distraction and one that I so appreciate. <br />
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Tomorrow Lucy goes in for her first ear surgery. I want to be optimistic but I think It is more practical to be realistic. Lucy hasn't had any functional hearing in her left ear for months. I kept holding out hope that it would return but I don't think that's in the cards. Especially now after the ridiculous ear infection that set in. This morning we had another scare. I went to wake her up for school and she didn't respond. I could see her breathing so I knew that she was alive (not to be dramatic, but seriously.) When I went over and woke her she couldn't hear me. She couldn't hear anything. Her right ear, her "good" ear, had no hearing. I was scared and Lucy was very confused. I can't imagine what was going through her mind. <br />
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But my goodness! Have I mentioned how determined she is? She insisted on going to school today, although we were about 2 hours late. It was very challenging and huge kudos to her teacher for being willing to try to manage today. Funny story: Lucy's teacher sent me a text around 1:00 to give me an update. It said <i>Bad News: Lucy's can't hear anything. Good News: Doesn't seem to bother her a bit. </i> At one point the teacher was trying to teach and Lucy was sitting at her desk just a hummin' away. She couldn't hear herself but the whole class sure could! <br />
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Listen, if I can't laugh at the situation I would cry myself silly. Our life is quite comical at times. <br />
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Last week we went on a short little trip out West and had a quick family vacation before surgery. We were very thankful the Dr. allowed us to travel so we made the most of our time away. Lucy was registered to ski with the NSCD, the National Sports Center for the Disabled. Last year she did the same but sat in a sit-ski which is an adaptive ski seat. This year, however, Lucy was determined to ski. We had not discussed this previously so I was more than shocked when this all came about. <br />
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I'll tell that story tomorrow (or the next day) because it's quite a doozy. For now, I'll leave you with this precious bundle of POTENTIALITY. 100 bonus points to any Southern Baptist who knows what song I stole that word from. The child that was determined to ski is my daily source of inspiration. She reminds that me no mountain is too big and that I don't ever have to take "no" for an answer. Lucy provides my daily lesson of courage and humility. <br />
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Tomorrow morning I will walk into the hospital worried, scared, anxious, doubtful and embarrassed at my lack of faith. Lucy, on the other hand, will walk in ready to tackle the challenge ahead of her. She won't look back but rather will run ahead to the finish line. She will be brave and courageous and will leave everyone she greets in awe. I love this kid. She is the very best. <br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com25tag:blogger.com,1999:blog-5845195637603537263.post-11952601257160787972016-01-18T22:53:00.001-06:002016-01-18T22:53:20.892-06:00Hello From the Other Side<br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Jack after a fun birthday party</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Tacky day at school</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Decade day at school</td></tr>
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Ok, so that was pretty lame but that's how life feels right now. We are working hard to keep things going at the Krull house although some days I have my doubt we are succeeding. I have several things to share, as we have been quite busy since I last wrote. The Go Lucy Go Foundation was a huge success and I'm so excited to report that we raised more than $45,000 for our work at LeBonheur and with families at St. Jude. </div>
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Soon after the dinner we headed to East Tennessee for Thanksgiving fun with Erik's family. As always, it was a great, but too short, weekend.</div>
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When we got home from Thanksgiving travel Lucy took a quick trip to Nashville to the new American Girl Store with my parents and Ella competed in her 3rd swim meet for her school's new swim team. </div>
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And then, as it often does, the pendellum shifted and things went downhill fast for our family. <br />
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<i>(To backtrack a tiny bit, Christmas 2014 Lucy woke up one morning and had dramatic hearing loss in both ears but especially the left ear. Tubes were put in Feb of 2015 and worked for about 3 days. She battled chronic ear infections all year and we were in and out of the ENT for 8 months straight.)</i><br />
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After a particularly rough week at school and one really, really bad day I just lost it. I seriously lost it. I called doctors and hospitals and made a real fool of myself to be honest. I knew Lucy was sick but I didn't seem to be getting through to anyone. Its a maddening thing to be a momma arguing with doctors. A new ENT at St. Jude agreed to see Lucy and a CT revealed a real mess. <br />
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Fast forward through a hospital stay and 2 PICC lines, both requiring Lucy to be put to sleep, we have an uphill battle ahead of us. <br />
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I tell this story so that I can remember just exactly how I felt during this last hospital stay. When the nurse came in to do our home training for administering the IV antibiotics, I had a true flashback moment. She set the supplies on the hospital table and my knees buckled. I was weak and sick to my stomach. I actually had to sit down before I could even continue with the training. Every memory of the first few months after Lucy's initial diagnosis flooded my heart and soul. I was scared and I was immediately tired.<br />
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The same day that Lucy's was admitted for her treatment, my mom took Ella to the allergist for some testing. This is why...<br />
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This is called Dermographia and her whole body looked this way. She was extremely tired, she vomited a lot and she stayed green. We were very worried about her as I knew something just wasn't "right." Can you believe it, the poor child tested off-the-charts for Celiac disease. It's been a huge adjustment for Ella but I am happy to report that she is feeling wonderful and adjusting to her new diet very well. There are now 5 immediate family members between Erik's family and mine who have Celiac disease. I guess those genes run strong. <br />
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The past few weeks have been tough as Lucy is adjusting to the total loss of hearing in her left ear and hearing that ebbs and wains in her right ear. It was determined that she has a very large Cholesteatoma in her left ear which will have to surgically removed. This Cholesteatoma is due to damage from radiation and a nasty infection that improperly treated for months on end. Surgery is scheduled for February 4th and I am already nervous as a cat about it. It is rather intrusive, as bone will have to be cut away behind her ear. The infection has deteriorated the inside of her ear, leaving her with no ear drum or other ear bones. The Otologist has prepared us for a total ear ablation in which he will clean everything out and sew her ear shut. <br />
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I know that is graphic and a lot to take in but its the reality for Lucy. Cancer treatment, we knew, would be worse than the cancer itself. Again, Lucy is paying the price for the necessary treatment that saved her life. <br />
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The right ear will be next. The damage to the bone/skull is much worse in the right ear and will actually be a harder surgery. The recovery from the 2nd surgery will be brutal, or so we have been warned. Although the damage is worse, the hearing seems to be "intact." That is, what is left of her hearing after radiation. The doctor feels confident that he can salvage what is there and that with her hearing aid she will have a functioning ear. <br />
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We have given this to God and we know that He is holding Lucy and our entire family through this next journey. We are grateful for a school that is willing to work with Lucy, our family who always seems to be right here when we need them and our friends who always have our backs. I am especially thankful to all of you who still pray for our family. The emails and messages I have received asking about Lucy are such a wonderful reminder that so many people love a little girl they have never met. <br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com23tag:blogger.com,1999:blog-5845195637603537263.post-1544327626511228082015-11-08T21:11:00.003-06:002015-11-08T21:11:26.234-06:00It's Going to Be a Blast!<div class="Default">
<span style="font-family: Cambria;">Hello to all from the Go Lucy Go
Foundation.</span><span style="font-family: Cambria;"> </span><span style="font-family: Cambria;">Thank you for being such
great supporters of the work that we do for LeBonheur Children’s Hospital and
families in medical crisis.</span><span style="font-family: Cambria;"> </span><span style="font-family: Cambria;">We wanted to
share with you some of the exciting auction items up for grabs at this year’s
event.</span><span style="font-family: Cambria;"> </span></div>
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For those of you who have bought your tickets, we can’t wait
to see you there.<span style="mso-spacerun: yes;"> </span>If you haven’t yet,
it’s not too late.<span style="mso-spacerun: yes;"> </span>Go to <a href="https://www.eventbrite.com/e/go-lucy-go-dinner-and-auction-2015-tickets-18597425400">https://www.eventbrite.com/e/go-lucy-go-dinner-and-auction-2015-tickets-18597425400</a>
today to reserve your seat.<o:p></o:p></div>
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<span style="font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Live Auction items include:<o:p></o:p></span></div>
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<span style="color: red; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Myriad Pro Light"; mso-hansi-theme-font: major-latin;">6-Night Stay in Winter Park, Colorado<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpFirst" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l2 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="color: black; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: #262626; mso-bidi-font-family: Verdana;">This home located in the beautiful Fraser Valley in Fraser,
Colorado. It is located only 2 miles from Winter Park Ski Resort, 10 miles to
Granby, and 18 miles from the Rocky Mountain National Park. The Denver
International Airport is approximately a one and a half hour drive along
Highway I-70. </span><span style="color: black; mso-bidi-font-family: "Myriad Pro Light";"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l2 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="color: black; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: black; mso-bidi-font-family: "Myriad Pro Light";">4 bedrooms—sleeps 13<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: black; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: black; mso-bidi-font-family: "Myriad Pro Light";">check out its webpage at <b style="mso-bidi-font-weight: normal;">VRBO.com
listing #298647</b><o:p></o:p></span></div>
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<span style="color: red; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">Large Big Green Egg with Nesting
Table<o:p></o:p></span></div>
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<span style="color: red; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">Memphis Night Out on the Town</span><span style="color: windowtext; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: windowtext; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: windowtext; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">2 lower-level
tickets to a Memphis Grizzlies Game<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: windowtext; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: windowtext; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">Dinner at The
Majestic Grille<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: windowtext; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: windowtext; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">Accomodations at
The Peabody Hotel<o:p></o:p></span></div>
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<span style="color: windowtext; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="mso-spacerun: yes;"> </span>-------------------------------------------------------------------------------------------------------------------------<o:p></o:p></span></div>
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<span style="color: windowtext; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">Silent Auction items
include:<o:p></o:p></span></div>
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<span style="mso-spacerun: yes;"> </span><span style="color: red; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">4 Night Cancun Coastal Adventure </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">(includes:)<span style="color: red;"><o:p></o:p></span></span></div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->Round trip airfare for 2<o:p></o:p></div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->4 nights at the Westin Resort and Spa Cancun
(deluxe ocean view room)<o:p></o:p></div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->Sightseeing and snorkeling Catamaron Cruise with
open bar<o:p></o:p></div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->Parasailing for 2<o:p></o:p></div>
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<span style="color: red; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Myriad Pro Light"; mso-hansi-theme-font: major-latin;">4 or 5 Night Royal Caribbean Cruise </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Myriad Pro Light"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Myriad Pro Light"; mso-hansi-theme-font: major-latin;">Bermuda,
Bahamas or Caribbean<o:p></o:p></span></div>
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</span></span></span><!--[endif]--><span style="mso-bidi-font-family: "Myriad Pro Light";">Balcony
Stateroom for 2<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
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</span></span></span><!--[endif]--><span style="color: black; mso-bidi-font-family: "Myriad Pro Light";">Choose from up to 5,000 games in 50 markets nationwide. </span><span style="mso-bidi-font-family: "Myriad Pro Light";"><o:p></o:p></span></div>
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<li class="MsoNormal" style="color: black; margin-bottom: 3.2pt; mso-layout-grid-align: none; mso-list: l7 level1 lfo7; mso-pagination: none; text-autospace: none;"><span style="mso-bidi-font-family: "Myriad Pro Light"; mso-bidi-font-weight: bold;">2 lower level seats to your chosen regular season MLB, NBA, NFL, or
NHL game, or 2 grounds passes to a non-major PGA golf tournament1 </span><span style="mso-bidi-font-family: "Myriad Pro Light";"><o:p></o:p></span></li>
<li class="MsoNormal" style="color: black; margin-bottom: 3.2pt; mso-layout-grid-align: none; mso-list: l7 level1 lfo7; mso-pagination: none; text-autospace: none;"><span style="mso-bidi-font-family: "Myriad Pro Light"; mso-bidi-font-weight: bold;">2-night weekend stay in a standard room in deluxe accommodations
such as Hyatt, Marriott, Sheraton, Wyndham or comparable </span><span style="mso-bidi-font-family: "Myriad Pro Light";"><o:p></o:p></span></li>
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within the 48 contiguous U.S.</span></li>
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Private Jockey Club Suite for 2 at Churchill Downs during the Spring,
September or Fall Meets </span><span style="mso-bidi-font-family: "Myriad Pro Light";"><o:p></o:p></span></li>
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airfare for 2 to Louisville, KY1 </span><span style="mso-bidi-font-family: "Myriad Pro Light";"><o:p></o:p></span></li>
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<span style="color: red; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Myriad Pro Light"; mso-hansi-theme-font: major-latin;">Other items of interest:</span></div>
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<!--[endif]--> American Girl Doll- Maryellen doll and book<o:p></o:p></div>
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Week's vacation at Water's Edge Condominium (May 7-14) Ft. Walton Beach</div>
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</span></span></span><!--[endif]-->Yeti Cooler 65 oz<o:p></o:p></div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
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And many more items that you will just have to see!<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<br /></div>
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Remember, it’s not too late to purchase your ticket.<span style="mso-spacerun: yes;"> </span>Go to <a href="https://www.eventbrite.com/e/go-lucy-go-dinner-and-auction-2015-tickets-18597425400">https://www.eventbrite.com/e/go-lucy-go-dinner-and-auction-2015-tickets-18597425400</a> today to reserve your seat.<o:p></o:p></div>
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<span style="font-family: "Janda Stylish Script"; font-size: 36.0pt;">We can’t wait to
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com4tag:blogger.com,1999:blog-5845195637603537263.post-74816057320207996352015-10-31T09:42:00.001-05:002015-10-31T09:42:41.799-05:00Weaknesses and Upcoming Scans<div class="separator" style="clear: both; text-align: center;">
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This past week Jack has been sick. He fought a nasty virus which caused him to spike high fevers that brought along vomiting. <br />
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D<span style="font-family: Times, Times New Roman, serif;">id I mention that I have to host a Dinner and Auction on November 12th? You know, that Go Lucy Go Dinner that I spend months preparing?</span><br />
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<span style="font-family: Times, 'Times New Roman', serif;">I think I spent as many hours praying for protection for my family as I did cleaning up puke messes. Admittedly, this prayer was completely selfish because I don't have "time" for anyone else to get sick. Not now. </span><br />
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<span style="font-family: Times, Times New Roman, serif;">In between the vomiting, the cleaning and the precious time holding my sweet boy I battled the defeated feeling that was slowly encroaching its way over my soul. "How in the world would I ever be ready for the event?" "I lost a whole week--I'm doomed." "Maybe its just not supposed to happen." My poor husband-</span>--there were lots of tears shed this week and I'm sure I was more than pleasant to be around. <br />
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I tried to get work done when I wasn't caring for Jack. I tried to make phone calls, plan menus and secure auction items. It seemed that the harder I fought to make the Dinner a priority over Jack the more the pieces would unravel. <br />
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And then I stopped. I just quit. And this is why:<br />
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<span style="background-color: #fdfeff; font-family: Trebuchet, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 20px; text-align: justify;"><i>But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Cor 12:9</i></span><br />
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<span style="background-color: #fdfeff; font-family: inherit;"><span style="line-height: 20px;">At the moment I admitted my defeat and stopped trying to rescue myself God sent some amazing friends to start picking up the broken pieces and began restoring my heart and faith. Friends that jumped to the </span></span><span style="font-family: inherit;"><span style="line-height: 20px;">rescue getting auction items, a team of friends that will be handling huge assignments at the Dinner, sweet friends who began sending encouragement over the phone. And there were even larger possible answered prayers that seemed to come from </span></span><span style="line-height: 20px;">absolutely</span><span style="font-family: inherit;"><span style="line-height: 20px;"> nowhere that ignited a spark in me like I </span></span><span style="line-height: 20px;">haven't felt in a long time. God is so very good. </span></div>
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<span style="line-height: 20px;">I am so thankful for God's promises to hear and answer our prayers. I am also thankful for the burden that He placed on our heart for the Go Lucy Go Foundation. In my devotional this morning I read the following </span></div>
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<span style="line-height: 20px;"><i>"Oh the burdens we lovingly bear but cannot understand! Oh, the inexpressible longings of our hearts for things we cannot comprehend! Yes we know they are an echo from the throne of God, and a whisper from His heart. " Cowman</i></span></div>
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<span style="font-family: inherit;"><span style="line-height: 20px;">We didn't go </span></span><span style="line-height: 20px;">searching</span><span style="font-family: inherit;"><span style="line-height: 20px;"> for an </span></span><span style="line-height: 20px;">opportunity</span><span style="font-family: inherit;"><span style="line-height: 20px;"> to create a non-profit </span></span><span style="line-height: 20px;">organization</span><span style="font-family: inherit;"><span style="line-height: 20px;">. Before Lucy got sick I </span></span><span style="line-height: 20px;">didn't</span><span style="font-family: inherit;"><span style="line-height: 20px;"> even know that there were families suffering that needed the help we could provide. But God, through Lucy's cancer, placed on our hearts a groaning, an echo, greater than anything we could have ever dreamed or imagined. Its the greatest blessing we could have </span></span><span style="line-height: 20px;">received</span><span style="font-family: inherit;"><span style="line-height: 20px;"> through her sickness. </span></span></div>
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<span style="line-height: 20px;">Last week we received a "random" call (God doesn't do random) from a hospice organization in Memphis. There was a family in need of a lot of assistance. The child needs to come home on hospice; the hospital has done all it can. Because of her cancer she is very immune compromised and the single mom's house is not in any kind of condition to bring her home. The carpets are molded and mildewed and the utilities had been turned off for several months. </span></div>
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<span style="line-height: 20px;">Because of the work of the Foundation and the generous donations from you we were able to have their utilities turned back on and we are having all the flooring replaced in this child's home. There is nothing we can do to save this child's life. Other than a miracle from our creator, this child will die soon. But we are able to give the gift of "normal" and "family" to this mom so that the child can come home and die surrounded by her brothers and sisters. </span></div>
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<span style="line-height: 20px;">THAT--that is a burden, an echo, that I am willing to not comprehend but bear for the rest of my life if God wills. </span></div>
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<span style="line-height: 20px;">Blessings upon blessings have come my way since Lucy was diagnosed. The honor of using your donations to help this family is one of the greatest yet. </span></div>
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<span style="line-height: 20px;">So, there is a Dinner and Auction on November 12th that we would be honored for your attend. You donations help make sure that this kind of work is able to continue. Can't come to the dinner but want to make a donation? We would be grateful for that too. Or maybe you have an item that you would like to donate to the auction? Just let me know and we would be honored to have it. You can go to <a href="http://www.golucygo.org/">www.golucygo.org</a> to find out more. </span></div>
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<span style="line-height: 20px;">Also, as you are saying your prayers the next few days we sure would appreciate one for Lucy. She has scans on Monday morning. We are asking for clean scans and we continue to pray for complete healing for her brain and body. </span></div>
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com6tag:blogger.com,1999:blog-5845195637603537263.post-87009698307071049812015-10-04T20:56:00.002-05:002015-10-04T20:57:28.928-05:00A State of WorshipFor all accounts, today was a <i>crappy</i> day. I woke up before the kids, a prerequisite for a good day, and drank coffee while chatting with the hubby. Lucy was sleeping well so I hated to wake her for Sunday School. Why? Two reasons: 1. She is still a recovering cancer patient and when I tell you "she's going great, thanks for asking" I'm usually lying. She gets tired, her brain shuts down and she needs sleep. Lots and lots of sleep. 2. My kids get 5 days of Sunday School every week. I am so grateful for the amount of Biblical emphasis our school places in curriculum. <br />
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So, there's that. I totally justified letting Lucy and Ella sleep through the Sunday School hour. <br />
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Ella wakes up, we take showers and get fully dressed--makeup included for me. Erik and Jack are at church, because a good Lutheran never misses a Southern Baptist Sunday School lesson. No really, they went on fully expecting us to follow right behind. When Ella and I are completely ready to walk out of the door, I realize that Lucy has no intention of waking up anytime soon. After a disappointing text message conversation with the hubs I realize it's just not going to happen for me today. <br />
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I wanted to go to church, I needed to go to church. I give, give and give all week. Sunday morning is my time to recharge. I love the music most of all. When our choir sings, the special music, the worship through instruments. Music is my spiritual animal.<br />
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For about 3 hours I sulked and pouted. I was literally mad that I didn't get to go to church. I begrudgingly fed my family lunch, lounged around in my sweats and read books to Lucy. We played golf outside in the backyard and then worked with Jack hitting a baseball. Ella played with neighborhood friends and we had family pizza night--everyone made their favorite. After that we colored in Jack's coloring book while the other two snuggled on the couch watching TV. <br />
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For all accounts, it was the <i>perfec</i>t day. It only took me until 3pm to figure it out, what with the whole missing church and me being a big baby about it. <br />
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<span style="background-color: white;">Somewhere along the way, though, I </span>allowed the legalism of being at church get in the way of my real opportunity to worship. I have been devouring books lately. Jen Hatmaker is shaking my world upside down. She is piling onto the work God started in me 4 years ago. I am simultaneously uncomfortable and totally hungry for more. <br />
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Everyday I am recognizing the gift of religious freedom that came with cancer. 38 years of religiosity has taken on a new life---and I love it. God is surely stiring a spirit within me yearning for more, for so much more. The greatest gift I have been given is the desire to read His word. All my life I knew about the Bible but its only been recently that I've known the Word. And let me tell you, It. Is. AMAZING. <br />
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Trying to reclaim my wasted opportunity, I sat outside for a long time this afternoon reading some challenging perspectives on life, I spent some time in prayer and then allowed myself forgiveness for the way I behaved this morning. I think I'll always fight the urge to follow the "rules" of church. It's who I am (type A super-pleaser). My prayer is that I will continue to find God each day of my life; in the small moments, in the rush of motherhood and in the trials of marriage. And when I find Him there, and He will <i>always </i>be there, I want to worship Him then. Right there where He is. <br />
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I am learning that I don't have to wait until Sunday. <br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com11tag:blogger.com,1999:blog-5845195637603537263.post-74837812826003899622015-09-11T22:13:00.003-05:002015-09-11T22:13:55.755-05:00Moments that Sustain<span style="background-color: white;"><span style="font-family: Calibri, Arial, Helvetica, sans-serif;">Yesterday I cried (a lot). 3 kids and 3 sets of activities. Homework, dinner, laundry, more homework. I'm too busy, but not any busier than you dear reader. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Calibri, Arial, Helvetica, sans-serif;">Some days it's just hard to move forward. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Calibri, Arial, Helvetica, sans-serif;">Today as I drove to Memphis for a special meeting at St. Jude I scolded myself for agreeing to be on a council that I honestly didn't have time for. It was a huge honor to be asked and not just anyone gets this distinction. Erik and I discussed it and we agreed it was the right thing to do. Still, this morning I was all but mad I had to go. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Calibri, Arial, Helvetica, sans-serif;">I want to shared with you the letter I wrote to the director when I got home:</span></span><br />
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<span style="background-color: white;"><span style="font-family: Calibri, Arial, Helvetica, sans-serif;"> " </span></span><span style="background-color: white;"><i><span style="font-family: Calibri, Arial, Helvetica, sans-serif;">My daughter, Lucy, is the reason we came to St. Jude. She is 9 now and its been 4 years since her diagnosis. She has recently been having severe digestive issues and we have been struggling to get the answers we need. After seeing several doctors she has finally been diagnosed with GI migraines. The solution is a low dose of Amitriptyline. </span></i></span><br />
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<i><span style="font-family: Calibri, Arial, Helvetica, sans-serif;">Today during the pharmacy talk on the genetics program this very drug was </span></i><i><span style="font-family: Calibri, Arial, Helvetica, sans-serif;">discussed</span></i><i><span style="font-family: Calibri, Arial, Helvetica, sans-serif;">. As they were talking, my memory was searching through the past letters I had received from the study. When I got home I realized my hunches were correct. Lucy was one of the 16% percent who is considered an ultra-rapid metabolizer for the drug. </span></i></div>
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<i>If I had not been there today I would have never remembered to check the letters that had been sent to me. She would have been taking medicine that was ineffective and still suffering through the migraines....." </i></div>
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I know it might not seem like much but this <b>God whisper</b>, this God affirming interaction, reassured me that God will continue to sustain me on even the hardest of days. I needed to be reminded that my life will never fit the normal ideal of a stay-at-home mom. My job description is different than I ever imagined it would be. Whether its splitting my time between XC matches, soccer games and swim meets or going to meetings at the hospital where I hear about future protocols that may one day save Lucy's life. </div>
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That incredibly busy day yesterday saw two amazing moments that I have to share. First, Lucy participated in her first golf match. She had so much fun and even asked to go back today. It's such a wonderful gift watching her play. She's not the strongest on the course but she is steady and consistent. Besides, she's super cute in her little skirt. </div>
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At the same time (thank goodness for grandparents), an hour away, Ella was setting personal bests at her XC meet. She placed 14th (adjusted time accounted last night) out of 160. I was so nervous before she ran I almost got sick. When she runs I thank God for the health legs and lungs she was given. </div>
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Although I am going to bed tonight with a tired body I am sure to wake up with a renewed spirit. I was brought out of a dark place today I am very thankful. Had I not listened and been willing to step out in faith I would have missed a very important revelation. Sometimes our moments and days may not make sense but I choose to believe they are all necessary pieces of an amazing puzzle God is creating with our lives. </div>
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<a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D5845195637603537263%23editor%2Fsrc%3Ddashboard&media=https%3A%2F%2F2.bp.blogspot.com%2F-gRGml8exwNc%2FVfOUIXdruuI%2FAAAAAAAAMpE%2F471EwLRB5D8%2Fs400%2FIMG_1697.jpeg&xm=h&xv=sa1.37.01&xuid=94ozZkAGd7DX&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 153px; opacity: 0.85; position: absolute; top: 1843px; width: 40px; z-index: 8675309;"></a><a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D5845195637603537263%23editor%2Fsrc%3Ddashboard&media=https%3A%2F%2F2.bp.blogspot.com%2F-gRGml8exwNc%2FVfOUIXdruuI%2FAAAAAAAAMpE%2F471EwLRB5D8%2Fs400%2FIMG_1697.jpeg&xm=h&xv=sa1.37.01&xuid=94ozZkAGd7DX&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 153px; opacity: 0.85; position: absolute; top: 1843px; width: 40px; z-index: 8675309;"></a>Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com9tag:blogger.com,1999:blog-5845195637603537263.post-64997204618953731092015-08-20T22:13:00.001-05:002015-08-20T22:13:46.878-05:00Grace-It's That Simple<br />
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The last 4 years have been nothing it not a long season of self reflection. There is still so much I don't understand and there are so many questions to which I don't have answers. I've spent lots of time talking to God, yelling at God, doubting God and then falling flat on my face totally in awe of grace. </div>
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One thing I can say for sure is I never once asked "Why me." Now, lots of times I asked "why Lucy," but never "why me." I guess a part of me always struggled with my relationship with God enough that I just assumed I deserved something like this to happen. I never was able to live up to the self-imposed ideal of what a God-fearing, Bible-believing Christian should look like. Isn't it funny how we create these images of what God wants when really all we have to do is ask Him?<br />
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I have yet to find the Bible verse that mandates we be in church every single time the door is open. I can't seem to find the verse that says you are forbidden from drinking alcohol. I'm still looking for that verse that says my sins are greater than yours. Funny how there seems to be no "formula" for salvation. Seriously, people. It's not that hard. Why do we make God's love and mercy so darn unattainable?<br />
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Here is what I've figured out. I am a sinner. Yep (jaw drop) every. single. day. <br />
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You know what else? Every day I find a bit of God's mercy just dripping down on me like a summer shower. It is glorious. And it's enough to get me through the next day, when I am more than confident I will fall in utter disgrace once again. This grace thing. You should find it. And then when you do, why don't you try to live it. I promise you won't be disappointed. <br />
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So, how does this relate to Lucy and cancer and my life now? I won't pretend to understand why Lucy got cancer. Honestly, it still hurts my heart to think about it. I'm sure, though, that if she hadn't I would have continued on with life so unaware of real people and real problems and would have been continually frustrated trying to live out my very disjointed relationship with Christ. Through cancer I was able to come face to face with the fact that there was nothing I could do or not do to deserve God's grace. The relationship I was striving so hard to create was always there for me since the beginning of my life. Faith is all it took. The same faith that allowed me to place my child in God's hands is the same faith that grants us eternal life through Christ.<br />
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I am completely convinced that if we all walked through life with a little more propensity for love we would be much happier people. Why don't we try it? Let's be a little less critical, a little less judgmental and let's be a little slower to anger. Today I allowed myself to be disappointed and hurt by my frustration with some issues in my town. Why do we work so hard to keep each other down? I can sincerely be happy for you--your successes makes me proud for you. And your failures, well they make me sad. I promise I won't kick you when you are down. <br />
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I found myself saying "I just don't understand" one too many times today. It's got to stop. I know this is crazy talk, but what if we tried? Even for a week! Let's give it a shot. I can promise you this, being a person of forgiveness, grace and happiness is NOT going to hurt you. You have nothing to lose. <br />
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For it is by GRACE that you have been saved..nothing you did got you God's favor. You can't earn it, you can't demand it and you can't guilt Him into it. If that doesn't for God then why do we expect it from our friends, our family or our children? <br />
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God's grace is sufficient for me. Is it for you?<br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com14tag:blogger.com,1999:blog-5845195637603537263.post-79414499721511954082015-07-22T21:23:00.000-05:002015-07-22T21:23:04.342-05:00St. Jude Tests and a HikeYou see, this is what happens. When I finally get ready to start blogging again--life. It always seems to sneak up on me-BAM! School starts in 2 weeks (crazy, I know) so we are cramming in two last minute trips out of town and several trips to St. Jude. <br />
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Lucy update: Lucy is having some testing done over the next few weeks to determine why she isn't responding to her growth hormone injections. When they test her IGF1 levels she appears to be responding well, but there is no direct correlation to actual growth. As usual, Lucy remains an anomaly in certain health issues. While I am trusting fully that God's hand is on this situation I would be lying if I said I wasn't worried. As my friend said today "sitting in God's waiting room is a lonely place to be." He is right.<br />
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I also want to ask that you pray for our friend Mason. Doctors have told his parents that he is in his last days. He's 10 and fighting for every single day. My heart is broken for his parents, especially his mother. She has become a dear friend. As I write about my summer adventures she is preparing the eulogy for her son's funeral. There is nothing right about anything in that sentence. It's hard to know what to say to her. She knows that I have been there with Lucy--but Lucy got better. Lucy was healed. How can I even begin to relate to what she is feeling? The survivor's guilt is almost more than I can bare when I speak with her. If you read this Monica--I love you. I'm praying for you. I wish I could do more. <br />
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This past Spring we took Ella to East Tennessee for a soccer tournament and while we were there we visited a lovely state park called Cumming Falls. It was a nice 1.5 mile hike that dumped us out at the base of a beautiful waterfall. <br />
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It was fairly chilly outside but I couldn't keep Jack out of the water. Thankfully we had dry clothes along!</div>
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I am thankful for every day that I have with these beautiful children. Every day I am reminded that each day is a gift. For that I am thankful.<br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com13tag:blogger.com,1999:blog-5845195637603537263.post-66679229555624201502015-06-10T21:26:00.001-05:002015-06-10T21:26:22.909-05:00All is Well, Sort OfIsn't it interesting that the very thing that brought me peace for so long now brings upon intense anxiety? This computer screen was an escape and therapy on so many sleepless nights and burdensome days while Lucy was sick. The things I couldn't say, I could write. I found so much comfort at the keyboard.<br /><br />
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Even before Lucy was sick I couldn't wait to get on this page and write about our daily adventures. Even when those "adventures" never saw us leave our yard, there was always a reason to write. This was my scrapbook, my journal.<br /><br />
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I haven't blogged in a while and I'm honestly doing so tonight through clenched fists. The pages of the last few months remain blank. I have so many pictures, so many memories to share, so many words to write--yet I can't. The passion isn't gone. It's a physical sickness that is stopping me.<br /><br />
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To those of you who have sent me emails, I want you to know that all is well in the Krull house. The kids are enjoying summer and both girls are on swim team. VBS is this week and we are going to the beach next week. It will be a well deserved vacation.<br /><br />
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I want to write again. I want to find the freedom that my fingers knew once more. Even opening the Blogger page was an anxiety-riddeled exercise. I don't quite understand why I can't do it. Why has the peace associated with writing escaped me? Even if no one ever read this page again, I want to write. I want to be here. I want this to be my heart once more.<br /><br />
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I'm praying and asking God to help me work through this. I know it's all part of the grieving process but I'm ready to move on. Working all those details out still has me on bended knee.<br /><br />
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I wanted to share this testimonial with you guys. We've told our story a million times. I've listened to Lucy's hell retold by countless scribes. But this one. As I watched this video I couldn't breathe. Maybe it was Dr. Boop speaking. I'm not sure. I can tell you that every bit of it was from the heart. <br /><br />
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<center><img border="0" class="nopin" src="http://i575.photobucket.com/albums/ss195/k8krull/Signature-31.png" height="40" width="85" /></center>Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com23tag:blogger.com,1999:blog-5845195637603537263.post-3154928828685809782015-04-13T19:14:00.001-05:002015-08-30T15:31:01.203-05:00Go Lucy Go RaceIf you've wondered where the Krull family has been for the past few weeks, we've been up to our eyeballs in race planning. It's been a lot of work, but oh! This year's race is going to be amazing---the best one yet! Not only is this our 5th anniversary, but we have also added a 10k. To date there are 695 participants registered. Will you please help us reach our goal of 800?<br />
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This year everyone who participates in the race will get a FREE hamburger or hotdog, chips and a drink. Not to mention a grab bag of race goodies and a commemorative race cup!<br />
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Most importantly, we are raising money for a great cause. The Go Lucy Go Foundation supports the efforts of LeBonheur Children's Hospital through various avenues. Hot meals, food pantry, clothes closet, the Ladybug Library and nurse education. I want to share a few pictures with you of some recent additions to the Child Life department on the 7th floor. The 7th floor of LeBonheur houses the Neuroscience Institute, where Lucy spent all of her time when she was there. <br />
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This is the new teaching doll that the Go Lucy Go Foundation purchased. This $3500 doll is interactive, allowing doctors, nurses and child life specialists to show children about their illness and upcoming surgery. I can't tell you how helpful this doll was for Lucy before her craniotomy.<br />
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Also this year, the Go Lucy Go Foundation purchased an iPad cart filled with 25 iPads. Kids are able to check these out and use them in their rooms. They can be used for keeping up with homework, medical education or just plain <b>FUN</b>! Every kids needs a distraction when they are in the hospital. <br />
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And here is the project near and dear to my heart. As I have said so many times before that we read books on a daily basis when Lucy was in the hospital. Providing these books for the children of the 7th floor brings such joy to our hearts. The books are donated with the assumption that children are going to want to take them home. Nothing makes us happier than knowing a book that brought joy to a child while he or she was sick will also bring happiness at home. <br />
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Because of you, families of brain tumor patients and children with Epilepsy are being cared for every single day. If you haven't registered, don't wait. The deadline to register for this year's race is drawing near. <b>This Wednesday, April 15th at MIDNIGHT the online registration will close</b>. For those of you who want to support the Foundation as a Spirit Runner, this will be your last day to sign up. Shirts will be mailed to you the week after the race. <br />
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Race registration will be available the day of the race for an additional charge. Go online now and help support the work of the Go Lucy Go Foundation. Register at <b><a href="http://www.golucygo.org/">www.golucygo.org</a></b><br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com9tag:blogger.com,1999:blog-5845195637603537263.post-65749918652860876762015-03-23T22:03:00.003-05:002015-03-23T22:03:31.805-05:00It's Been a While--Lucy Update<div class="separator" style="clear: both; text-align: center;">
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<i>This is Dr. Boop. The man God chose to save my daughter's life. </i></div>
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Wow. Where do I start? It's been such a long time since I've written or updated on Lucy. I am not even sure where to begin. First, let me update on Lucy. At the beginning of February I wrote about Lucy having tubes put into her ears. She was having a lot of hearing problems and we thought that this was going to be the answer. Immediately when she woke up from surgery she could hear-almost perfectly. We were amazed and ecstatic. However, within three days she was back in her hearing aids. <br />
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Fast forward a month and a few doctor visits later and we are fairly sure that the hearing loss she is experiencing is going to be permanent. High dose radiation left irreversible damage that she will just have to live with forever. I am extremely thankful for hearing aids and with them she can hear almost perfectly. While I am thankful for the aids I am still having a hard time with this one. Honestly, its just one more reminder that she is different. One more reminder that cancer tried to kill her. <br />
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To be perfectly frank, I'm struggling with a lot right now. Erik says its because I have been studying the Bible and the devil is working on me. I think he's right, but I also think it's a little more than that. I don't say this lightly, but I feel as if I have PTSD. I'd love to know how many other cancer moms feel this way.<br />
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I miss the perfectly healthy child that I took for granted for 5 years. I leave sporting events angry that thousands of children can run and play. A part of me dies every time I watch Lucy struggle through a social encounter. My heart literally aches as I see her fighting through the challenges that learning poses every single day. Yesterday as we left the soccer field I cried off and on for the rest of the day. <br />
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Most day I walk around in a fog, hardly remembering a moment of the day before. For example, I had to call the school the other day to find out why I was charged an amount on my account. Apparently it was for Jack's preschool registration for next year. I was mortified when she told me that I had turned in his application the week before. I don't even have a single memory of filling out the 6 page application. <br />
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So...yeah. I'm pretty much a hot mess right now. I think part of my PTSD involves this blog. For more than two years I poured my heart and soul onto these pages. This was my safe place--the place where my fears found words. Now, I can't even find the words to write. My brain stays so tired that I can hardly put a sentence together, much less write a fluent post. I can't even keep extended eye contact with people when we talk. Seriously, it's a real issue. I have a college degree in communications and have lost all ability to carry on conversations. <br />
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I know that God chose my family for this battle and He equipped us with all the tools for fighting that we needed during the battlet. I just wonder when the war ceases. Because right now it seems like every day is still a struggle. I didn't mean for this to end up as a pity-party but I needed to be honest. <br />
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Ella and Jack continue to thrive and I couldn't love them more. I am trying to respect Ella's privacy a little more as she is starting to become such a lovely young lady. We haven't really talked about it but I'm sure she's becoming a little more sensitive to my telling her business all over the internet. I will just say that she's just a ray of sunshine everyday and so full of life. She is making all A's and excelling in so many extra curricular things. She's got one of the lead roles in the church spring musical and she's playing club soccer. <br />
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Jack--woah. What can I say? This precious boy---he is everything I ever dreamed a little boy would be. He is wild, adventurous, passionate and super loving. I get a least 5 million kisses a day. I absolutely love this child. <br />
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Thanks for hanging with our family (and me). As I am finding out, Lucy's cancer diagnosis is something we all deal with every day. Some days are good. Some days are bad. Some days just suck. But we keep on moving and fighting. One day at a time. <br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com25tag:blogger.com,1999:blog-5845195637603537263.post-9403584571214065622015-02-23T22:14:00.001-06:002015-02-23T22:14:14.055-06:004 years today <br />
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4 years ago today. The diagnosis that rocked her world. Everything changed in the blink of an eye. </div>
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She's still here. She's still fighting and kicking cancer's butt. I am so proud of her and love her with every fiber of my being. </div>
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Will you come celebrated with us? The 5th Annual Go Lucy Go 5k/10k is April 18th. Come run, walk, bring a stroller. Come for the Kids Fun Run, come for the food, come for the party! Whatever you are looking for this race has got it! Maybe you just want to the t-shirt and that's cool, too!</div>
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Register now (or order a shirt) at www.racesonline.com</div>
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This is the race you DO NOT want to miss. </div>
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com9tag:blogger.com,1999:blog-5845195637603537263.post-23047304204179472712015-02-20T14:00:00.000-06:002015-02-20T14:00:03.978-06:00Ice Storm 2015<div class="separator" style="clear: both; text-align: center;">
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Today is day 9 of Spring Break Part 1. 9 days we've been confined to this house. Add to that the 1.5 weeks we were here before that with everyone being sick and that makes us being on lockdown for almost 3 weeks. While I have thoroughly enjoyed being home I would be lying if I said I wasn't ready for everyone, including myself, to get back on a schedule. Because to be honest, if I don't get out of these stretchy pants, get back to the gym and start another Whole 30 it's not going to be pretty!</div>
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Several areas around us have had the luxury of snow. We, on the other hand, have had nasty, dirty ice. At least we had one day to play on the ice before it started melting. </div>
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Icy, cold and undesirable weather is supposed to be with us the rest of the weekend but hopefully Monday will bring a new week!</div>
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com5tag:blogger.com,1999:blog-5845195637603537263.post-34375433894532791802015-02-19T21:33:00.000-06:002015-02-19T21:33:47.897-06:00Great News from Surgery(sorry for grainy iPhone pics)<br />
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Today Lucy had a very minor surgery procedure. It wasn't a major surgery but it sure was important. There was so much riding on its success. <br />
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Ive mentioned that Lucy has had a lot of hearing loss since Christmas. She basically was working on about 20% of her capacity. Even with hearing aids in she was struggling. Every day we could watch her withdraw more and more from life. She as distant from us as a family and she didn't interact much with her friends. She dreaded going to church and she had really begun to cling to me when we were in public. She was nodding yes to everything you said or answering with random comments when you asked her questions. This past week she even woke up crying one morning saying "I just can't hear anything." After all she's been through this one just broke my heart. <br />
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There were two issues that needed to be resolved today. First there was chronic fluid build up behind her ears. We knew this had been there for a while but she had not been healthy enough in the past to put in the PE tubes that she needed. It was such a simple procedure that we felt 99% sure would help her regain most of her hearing. The second issue was a little less glamorous. Thanks to high dose radiation that destroyed most of the secretion glands in her ears and damaged the lining of her ear canal, Lucy is not able to expel ear wax like most people. I know, gross right? What happens is that the ear wax becomes like cement and clogs the ear canal. So, you combine the fluid with the cement and you have a nasty little situation. <br />
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The thumbs up tells you all you need to know. The surgery was a huge success and she woke up (after the anesthesia grumpies wore off) and said "I can hear!" Talk about smiles. Erik and I were all grins! Only time will tell if one set of tubes will do the trick or if Lucy will have to have permanent tubes. Permanent tubes are definitely not desirable but given the radiation damage the doctor couldn't take them off the table. <br />
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Only time will tell and God has a perfect plan for her little ears. Thank you again for all your prayers and love. It still amazes me that so many of you still care for my girl. <br />
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Oh, and Ella is still just rocking life and winning every day. <br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com15tag:blogger.com,1999:blog-5845195637603537263.post-20612822472189463982015-02-12T10:34:00.001-06:002015-02-12T10:34:21.148-06:00Shhh...Sneak Peek!<div class="separator" style="clear: both; text-align: center;">
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I thought I would give you a sneak peek at the new race logo we are working on. The shirt is going to be similar to this in font and color. Shirts this year are a heathered (faded) royal Soft Style--which means they are super soft. They are the ones we have used in the past (the red and grey ones.)<div>
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We are putting a team in place whose responsibility is to send out shirts after the race to Spirit Runners. Our goal is to have every shirt mailed within 2 weeks of the race--if not sooner! </div>
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Sign up today for the 5th Anniversary Go Lucy Go 5k/10k. If you aren't local, support the Foundation by purchasing a t-shirt. Shirts can be purchased for $18 if you are going to pick them up at the race or $25 to have your shirt shipped to you. </div>
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See you April 18th.<br /><br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com3tag:blogger.com,1999:blog-5845195637603537263.post-25384749692912755552015-02-07T10:44:00.003-06:002015-02-07T10:44:58.001-06:00A Vacation<div class="separator" style="clear: both; text-align: center;">
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Erik and I are on vacation with our best friends, Amanda and Nelson. We've done this trip together for almost 9 years. It's a trip that we never get tired to taking. Being in Colorado, as I've said so many times before, is such a respite for my soul. Surrounded by God's amazing creation, I leave this trip rejuvenated and ready to tackle my life when I get home. <br />
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We even got to spend some time with my Uncle and his wife who are here at the same time. </div>
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The past few days we have had the best weather and best skiing that I think we've ever had. Today, unfortunately I am home with these friends..</div>
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I don't think its the flu but I'm pretty sure I coughed up a lung this morning. At least I've got a full day to myself to rest and recover. As you all know, mom's don't have the luxury of getting sick. Being out here I can lay on the couch and do nothing all day long! We fly home tomorrow, so I'm praying all this OTC medicine will do its job soon. For today, Joanna and Chip Gaines and HGTV are going to keep me company!</div>
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com3tag:blogger.com,1999:blog-5845195637603537263.post-72424446898618650592015-02-01T21:20:00.000-06:002015-02-01T21:20:03.738-06:00Some Awesome News<div style="text-align: center;">
Well, it's awesome news for me at least. (this is where I obnoxiously brag on myself)</div>
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Yep! I did it and I'm not stopping. The first time I did a Whole 30 I didn't have my "head straight" as I like to say. All I did was count down the days until I was done. Now really, that's not how you change your lifestyle is it? This time around it was so different. I never counted days, didn't have cravings and actually have enjoyed trying all the new recipes that I have found. I haven't weighed lately but I am loving my non-scale victories:</div>
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-So much energy I have to force myself to go to bed at night</div>
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-My skin looks great-Erik says my "color" looks good </div>
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-No headaches, tummy aches or muscle cramps</div>
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-My mid-afternoon cravings are gone </div>
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-I feel AWESOME!</div>
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<i>(Well I did until I unwittingly ingested Gluten and I've been sick for the past 24 hours. That's not been cool at all.) </i></div>
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Besides the Whole 30 I've been exercising at least an hour every day. It's not easy to find the time but I'm committed to making this change for me. So...here's to a new lifestyle, not another Whole 30!</div>
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In other news, Ella played in her first indoor soccer tournament this past weekend. She had a blast and I loved watching her play. The games were 15 minutes of crazy chaos. </div>
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<tr><td class="tr-caption" style="text-align: center;">This is my favorite picture. Coach L giving Ella a pep talk and Coach Erik trying to stay out of it! It's hard being your daughter's coach. </td></tr>
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Lucy hung out with me all day while we watched soccer and then we did a little shopping afterwards. My sweet girl is actually trying to grow a little so it was time for some new blue jeans. Jack spent the day playing on the farm with my Dad, having the time of his life. My Dad taught him how to drive a Trackhoe, which makes me smile when I think about how many happy hours my grandfather spent on one "rearranging dirt." That's what we used to say he did when he was bored. The memories they made will last forever. </div>
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com2tag:blogger.com,1999:blog-5845195637603537263.post-28806594603340961352015-01-24T09:15:00.002-06:002015-01-24T09:15:33.289-06:00The Burden of Compassion<div class="separator" style="clear: both; text-align: center;">
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<i>Hang with me. This is long, but there is a great lesson at the end of this post that can help you talk to someone who is suffering.</i><br />
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There seems to be so much suffering around me right now. Since January 1st of this year it seems as if someone I've known has passed away each week. Sometimes 2-3 people in a week. I've heard of cancer diagnoses as if its epidemic in our county. I often wonder if its really more rampant or am I just getting older and am more aware of death and know more people in the older generation? Part of me hopes that this increase of tragedy around me is God's way of ushering in the Tribulation. Lord Jesus I am ready to go home!<br />
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Right now I am reading through Job in the Bible. For those of you who many not be familiar with the story I will give you a very abbreviated, laymen's version: Job was a righteous man; God even called him "blameless." God allowed Satan to "test" Job through a series of horrendous, mind-altering calamities. Job lost his sons, his fortune and his health. The book of Job is a series of conversations between Job and the 3 friends who come to him to provide comfort and advice. The comfort that they try to offer becomes ridicule and condemnation. <br />
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The three friends, with their self-righteous attitudes, tear Job down as they berate him with their false philosophy that God punishes the wicked man and rewards the righteous man. Surely Job is lying about his sins since God's wrath is upon him. Their words of "encouragement" are bitter, mocking and only add insult to injury. <br />
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Job questions God many times. He is angry with God but Job never curses God. He remains faithful in his trust that God's hand is still upon him, even though it is unseen. Oh, how many times have I felt that way! I couldn't begin to count the times that I cried out to God asking why he had forsaken our family. <br />
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(everyone really needs to read the book of Job. Seriously. Go and do it now!)<br />
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How many times have you been to a hospital room to visit a dying relative? Do you have a friend that has cancer? What about your best friend's husband who has been laid off of work and they are barely making ends meet? I'd like to offer you a suggestion as you try to being a friend to them during this time. <br />
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Iva May says "People who have not suffered struggle to enter into the sufferings of others." Do you get that? It's the very definition of empathy. Sympathy is a totally different thing. Empathy means that you have been there. Empathy means that you are actually able to share in a persons suffering through mutual experiences. <br />
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To be clear, just because you haven't experienced the pain doesn't mean that you can't be a comforter during your friends time of mourning. Please don't get me wrong. I'm not saying that at all. But what I am suggesting is that you guard your words carefully. Beware placated comments such as "They are in a better place," "At least they aren't suffering any more," or "God just had a different plan for her." While all of these things are true, they can come across as condemnation or trite to the one suffering. <br />
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Unless you speak from your shared experience, you need to remember that only God can comfort the soul of the hurting. Go. Sit with your friend. Hold the hand of your best friend. But guard your words. I can tell you from experience that your silent presence will make the most profound impact. Because to the suffering, there are really no words that can make anything better for them. Only Christ can provide the peace for which their soul so desperately yearns. <br />
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As Erik and I continue to pray about the Go Lucy Go Foundation I have been brought to my knees every morning as I read through Job. Here are two points from my <a href="http://www.chronologicalbibleteaching.com/">Chronological Bible Study </a>(Iva May):<br />
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<li>"Identification with, acts of service, and kindness bring greater consolation than words spoken." </li>
<li>"Those who've suffered either become bitter toward others and God, or they become softer, kinder people who enter into the sufferings of others. " </li>
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Through this reading I feel as if my spirit has been renewed and my energy for the Foundation has been revived. I would like to ask for your prayers this week as we are exploring some exciting opportunities related to the Foundation. I want to be completely in God's will and not in my own. The great deceiver is working on my heart but I know that God will reveal His plan in His time. </div>
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<i>"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which ourselves are comforted by God. For as the sufferings of Christ abound in us, so <b>our consolation also abounds through Christ</b>. " 2 Corinthians 1:3-5</i><br />
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com6tag:blogger.com,1999:blog-5845195637603537263.post-63862282737838458792015-01-18T19:14:00.001-06:002015-01-18T19:14:38.882-06:00Oh, We Missed You!Well hello Mr. Sunshine! We sure have missed you. It's been a balmy 55 degrees here and you would think it was Spring. We've been outside as much as possible, soaking up this amazing weather. I sure don't want to wish the days away but I am ready for some longer-lasting warm weather. I've decided that I'm a much better visitor to cold weather than resident. <br />
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We've been riding bikes, going for walks, playing soccer and today we went to the park to play on the big playground while Ella was at soccer practice. Erik and I even managed to get in a little run after church. Banner day in my books!<br />
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Ella had her second basketball game of the season this Saturday. She is playing Upwards again, but she's moved to full court this year. It's been a huge adjustment for a lot of the kids, but thanks to soccer and cross country Ella's in pretty good shape (at least for the running part). Lucy loves to go watch her play, as she is always Ella's biggest cheerleader. Jack could care less but is happy that he gets DS time during the game. <br />
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I think the best part of my weekend has been watching the sunset at night. Each night seems to outdo the one before. Such a wonderful reminder on this Sunday night that God's hand has touched every single part of this Earth. </div>
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Katehttp://www.blogger.com/profile/05304478032446507014noreply@blogger.com3