tag:blogger.com,1999:blog-22215737011143900472024-03-13T19:07:05.997-07:00Follow Tillery's journey of hope through life with a brain tumor. Unknownnoreply@blogger.comBlogger132125tag:blogger.com,1999:blog-2221573701114390047.post-14879045316704317062020-10-20T16:33:00.000-07:002020-10-20T16:33:55.575-07:00God Has Opened a Door<p>When Tillery was first diagnosed with a brain tumor, the hospital "accidentally" discharged us to go home and by them doing that, it gave us the opportunity to seek a better hospital to care for our child. We have often looked back at that "accident" and have seen it as God's hand guiding us from the very beginning. If you will sit tight with me for a bit, I'd love to share how God has been with us since the beginning of this new growth time. </p><p>On July 27th, an MRI, which was to be Tillery's last biannual scan, showed new tumor growth and Tillery's team recommended sending a sample of her tumor for Foundation One genome testing, which we did. It took 3 weeks to get back and they emailed us the report on a Friday with plans to discuss and call us on Monday with recommendations. Over that weekend, I poured over the report, researching big medical terms and trying to make sense of it on my own. One finding that stood out was a gene mutation called an ALK fusion. In my research, I learned that it's typically seen in lung cancer tumors and most research is with adults. I also discovered one researcher out there that is researching how ALK impacts kids with brain tumors and that researcher is Dr. Giles Robinson at St. Jude. His name was everywhere concerning research and data regarding this mutation in kids and a treatment called an ALK inhibitor, which focused on the mutation. </p><p>That Monday, August 17, when our team from Cincinnati Children's called to talk about a few treatment options, I asked if the ALK inhibitor trial at St. Jude was still open. They had not thought of trying that, although they knew the drug was on trial, so they reached out to St. Jude to see if Tillery qualified. </p><p>The next morning, I read a devotion about praying specific prayers and sent a text to a group of my closest prayer warrior friends that read: "I'm asking you to join me in this prayer that I am convicted of...Pray that Tillery will be accepted into the trial at St. Jude and be cared for by Dr. Giles Robinson." </p><p>A few hours later, I got a call to let us know that the trial at St. Jude was closed. </p><p>We continued down the path of discussing TPCV, a four drug cocktail that was up next for treating Tillery's tumor, but it just didn't feel right. Joe and I decided to reach out to Dana Farber (DF), the top pediatric cancer hospital for low grade glimoa brain tumors in the nation, located in Boston. Our thinking was that it would not hurt to go to the best in the nation for a second opinion. We told Cincinnati we were reaching out to Dana Farber and they recommended also sending Tillery's full case file to St. Jude as well, in case they had a different trial for her. The caveat was that her pathology could only be sent to one place at a time for review. The recommendation was to send to St. Jude since they had just recently seen Tillery's case. </p><p>Dana Farber, with limited information, came back after a week with a recommendation that an ALK inhibitor would be the best option but that they had no option like that for us. They also said that since growth was so slow, we could afford to wait awhile, to see if something else was out there or if the tumor might just not grow anymore. If we decided to start treatment, they agreed with the TPCV option, since there isn't an available targeted therapy. </p><p>After hearing from DF, all eyes were on St. Jude to see if they may have something for us. After waiting some more time, we learned some frustrating news...a mistake had happened and the pathology had never been sent from Cincinnati to St. Jude! We were waiting for an answer and they did not even have the material they needed to review Tillery's case. We were disappointed and angry and scared, not knowing what this lost time might mean for our child. There were many calls and emails that week and finally everything was straightened out and the pathology slides were received in Memphis. Through this, Cincinnati told St. Jude they could communicate directly with us, instead of having Cincinnati as a middle man to communicate the findings. Again, I started to pray that it would be Dr. Robinson who would see Tillery's case. </p><p>Last Wednesday, October 14, the brain tumor board at St. Jude reviewed Tillery's case and afterward, we got an email that they had something to discuss with us and they would call on Thursday. Thursday morning, Joe and I were in separate places when I got the call from Dr. Larkin, an associate who works with Dr. Robinson. As she explained the treatment option, a few things stood out that didn't sound good. She talked about timing being uncertain and there was a possibility of being on the treatment forever. She also said we would need to relocate to Memphis. Paired with the idea of unknown long term side effects, those things didn't sit well with us. We quickly emailed back to St. Jude Thursday afternoon and said we would not be going there for a consultation. We informed them we would instead opt to begin TPCV. We emailed our teams in Cincinnati and here in Knoxville with our decision, and the Knoxville team sprang into action. They quickly scheduled us appointments for the morning of Tuesday, Oct 20, and ordered the oral chemo to be sent to our house for arrival Wednesday. </p><p>We decided to make peace with TPCV. </p><p>Last night, October 19, Dr. Larkin from St. Jude called to follow up. I told her we didn't think it sounded like their option was the right one for our family at this time and that we would proceed with TPCV. Maybe if TPCV didn't work, we could reach back out to them. But for now...thanks, but no thanks. Dr. Larkin asked if Joe and I were available to talk with Dr. Robinson for a few minutes because he really wanted to talk with us about his research. We decided to give him a minute and put the phone on speaker between us.</p><p>There was the familiar, and then, there was the unimaginable. </p><p>Dr. Robinson said a few of the scary things we have heard often...Tillery's pathology looks like no other tumor they have ever seen and it's also rather large. He said by looking at her pathology he would think it would be much more aggressive and faster growing so it was interesting that it had actually stopped growing for such a long time and that the current rate of growth is so slow. He explained that her tumor has a mutation that is 2 genes fused together and one (the ALK) is what activates the tumor growth. On a pathology slide, Tillery's tumor is filled with ALK mutations. Dr. Robinson told us about his research with an ALK inhibitor with high grade gliomas. He said he sees them drastically shrink the tumors, sometimes even to the point that they can be surgically removed. He said he's never tried this treatment in a kid with a low grade glioma because of unknown factors, but he said with Tillery's extremely rare pathology, he thinks she would be a good case to study. He would like us to come to Memphis for the first month so that he can closely monitor her. To see how she responds and how her tumor reacts. He than said that what he learns could then be applied to other low grade glioma kids! This treatment is an oral pill that she would take daily, so no yucky taste and no pokes or port. The only side effect he has seen with kids with brain tumors is some weight gain, which they would monitor. We would do scans every 2 months to see if it's working. If there's no change in 4-6 months, we would come off of it. If there is change, he thinks it could be significant, though he couldn't tell us exactly how long she would need to take it...6 months to possibly up to 2 years. His goal is that this could shrink her tumor to a small enough size that we could talk with her surgeon about removing the mass. Dr. Robinson is the first person to ever say to us that there is a possibility that our daughter might not always be a cancer patient!</p><p>I started praying over Dr. Robinson's research on September 2nd and on October 19th, he called and asked us to let him try a treatment on Tillery that could potentially not only save her, but could also save so many kids after her! It felt like an eternity to get here and there were many bumps along the way. And finally, last night, we saw God open a door for us and we have decided to walk through it. </p><p>This upcoming Monday, Oct 26, Tillery and I will move into housing on the St. Jude campus where we will stay for a month. Next week will be filled with meetings and appointments and will probably feel pretty overwhelming but on Thursday, we will meet Dr. Robinson and begin a journey with him that we are anxious, excited, and hopeful for. </p><p>Thank you for your continued prayers. Keep them coming. Big things are happening over here!</p>Unknownnoreply@blogger.com12tag:blogger.com,1999:blog-2221573701114390047.post-74568385571864776622020-09-14T07:11:00.001-07:002020-09-14T07:11:08.178-07:00Back in Cincinnati - MRI time again<p>It's been awhile since a trip to Cincinnati felt so heavy. </p><p>Last week, we posted our crazy previous 2 weeks and our plan moving forward. Then, over this past week, we continued to search for peace in that decision. Ultimately, we decided we needed to have more review of Tillery's chart. We are having her records sent for review by St. Jude and Dana Farber. Today's MRI will tell us if there has been growth over the past 7 weeks and how much growth. This will let us know if we can wait for those reviews before we start treatment or if we need to start chemo this week. We should receive the radiology report tomorrow. </p><p><br /></p><p>Last night, Tillery and I laid down in bed and she said "Mom, sometimes I say a prayer by myself in my bed." She wanted to say a prayer for us and asked "Do you have any prayer requests, Mom?"</p><p>Mom: Let's pray for your MRI tomorrow. </p><p>Tillery: Yeah, but why do I have to have an MRI?</p><p>Mom: Remember how we saw that your brain tumor has grown a little bit? We are having a new MRI to measure again so we can pick the best medicine for you. </p><p>Tillery: Will it be yucky medicine?</p><p>Mom: I don't really know. It might be a pill that you swallow or medicine that you drink. Or it might be a medicine we have to go to the hospital to take. </p><p>Tillery: I hope it's not yucky. I love you, Mom. </p><p>Mom (through tears): Mommy and Daddy love you so much Tillery and we will do all that we can to always do the very best for you. </p><p>Tillery: I know but why do you say it sad. </p><p>Mom: I'm sad that you have to take any medicine at all. I just want you to always be good. </p><p>Tillery: It's okay, Mom. If you feel sad or scared you can always come to me and I will give you a hug. </p><p>Mom: And if you feel sad or scared you can come to me and I'll give you a hug. </p><p>Tillery: Deal!</p><p><br /></p><p>This kid is amazing!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-755aYV23NtM/X195yEyLeQI/AAAAAAAABvQ/1youcbBk0KE7qQfeJ1vWjiYKGdGMTl1EQCLcBGAsYHQ/s960/119647760_10157918399153178_6200246737124991600_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://1.bp.blogspot.com/-755aYV23NtM/X195yEyLeQI/AAAAAAAABvQ/1youcbBk0KE7qQfeJ1vWjiYKGdGMTl1EQCLcBGAsYHQ/s320/119647760_10157918399153178_6200246737124991600_n.jpg" /></a></div><br /><p><br /></p><p><br /></p><p> </p><p><br /></p>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2221573701114390047.post-65142370368044549342020-09-05T08:30:00.007-07:002020-09-05T08:30:52.943-07:00Treatment Options, Plans, and Prayer RequestIt's been a few years since we've needed to write anything on Tillery's blog about her own medical care. Not gonna lie...I'd be okay to never have to do it again. But here we are...<div><br /></div><div>Here's a timeline of the past 6 weeks: </div><div><i>(This is gonna be long so if you'd like, skip to the end for the plan.)</i></div><div><br /></div><div><u>Monday, July 27</u> - Tillery had an MRI at Cincinnati Children's that showed new growth. For Tillery growth happened in 2 ways. She has actual growth of the tumor size around the perimeter but also, in 2017 her tumor was hollowed out in the OR and that space has also filled in. This means that Tillery no longer has safe space for growth and additional growth would put pressure on areas in her brain that would cause damage that could potentially be irreversible. </div><div><br /></div><div><u>Wednesday, July 29</u> - The brain tumor board at Cincinnati Children's Hospital met and Tillery's case was presented. Her neurosurgeon and neuro-oncologist, along with their peers, determined the best next step would be to send a sample of Tillery's tumor that was removed in 2017 to have Foundation One genome testing to determine if there are any mutations that could be specifically targeted with treatment. </div><div><br /></div><div><u>Friday, August 21</u> - The Foundation One testing came back with results. The team was specifically interested to see if there was a BRAF mutation, which would open Tillery up to a new, targeted chemo option that is well tolerated and has good success rates. Tillery did not have that mutation. Instead, Tillery's tumor has a less common mutation called an ALK fusion. We have since learned that they cannot determine at this time how rare this is because they have not included it as a part of the testing for long enough to have a large sample. </div><div><br /></div><div>Over that weekend, I reached out in some brain tumor parent groups to learn more about the mutation. I was able to connect with 2 other moms and we messaged throughout the weekend sharing research on the mutation and common chemo options. Both of their children are on treatment for the first time and are on standard protocol treatment like Tillery did the first time. They knew of one other child with the mutation who has passed away and shared her page so I could read through posts about her treatment journey. The cancer parent community is the greatest resource to give real faces and stories to the hypotheticals we hear from the medical team. </div><div><br /></div><div><u>Monday, August 24</u> - We had a call with Dr. Pillay-Smiley, our new oncologist at Cincinnati Children's. She had shared the report with Dr. Fouladi, our original oncologist who is now at Nationwide Children's and also Dr. Spiller here at East Tennessee Children's. The 3 of them were discussing options and she could not yet give a recommendation but talked through a variety of things they were discussing that included the same treatment we have done in the past, other standard of care drugs, inhibitors for the mutation, and trial medications. We took notes, asked questions, and ended the call with a plan for the oncology team to continue revisiting Tillery's medical history and all options and to come back with a recommendation soon. </div><div><br /></div><div>Here I must say is when things became real and really hard for me. We still had no news to share with people: no direction, no plan, no answers. But what we had was a whole lot of possibilities and the fact that we were at a place of such confusion that there wasn't a direct treatment plan was unsettling. Sadly, this is often the reality for kids with cancer. There isn't enough strong research to point down a definite path so it becomes a bit of a guessing game. How often do you go to a doctor when you don't feel well and they say "well there are a lot of medications we can try and none of them is especially great and we don't have enough information to even make a good recommendation, give us some time to read all the research and your detailed symptoms and see if there is something that might be a fit"? It's uncomfortable to have no clear plan. </div><div><br /></div><div>We waited an entire week and the following Monday, left messages and emails and still never heard anything. </div><div><br /></div><div><u>Tuesday, September 1</u> - How appropriate that on the first day of Childhood Cancer Awareness Month, we spent the afternoon on the phone discussing treatment plans? Elizabeth, our nurse practitioner who is the only member of our original oncology team that remains in Cincinnati, called to discuss the options. At this point, they had been narrowed to 2. One drug is newer and targets the ALK fusion, the other is older with harder side effects but known results. After a long discussion and Q&A, we decided that next steps were to try for the targeted inhibitor and see if Tillery could be accepted into a drug trial at St. Jude. </div><div><br /></div><div>I should also mention here that while we ended the call with a plan, the plan was shaky at best and relied on a lot of things to fall into place. We spent the evening discussing backup plans based on our call with Elizabeth and this included the possibility of moving our care to Nationwide Children's to follow Dr. Fouladi and searching for other hospitals that might be trying this same inhibitor drug. See, the problem with the targeted therapy is that it's been used in adults and is just now being tried in kids which means they don't know the dosage so it's a guess. You could under medicate and end up not seeing results or over medicate and cause more harm than good. None of the medical team members have ever used this drug and none is overly comfortable. </div><div><br /></div><div><u>Wednesday, September 2</u> - Elizabeth called that afternoon to let us know that Tillery had not been accepted into the trial at St. Jude. Trials look for specific types of patients and Tillery's case does not qualify her. The team was now recommending the other drug that isn't targeted to her mutation but instead has a long track record in the low grade glioma world. We discussed specifics of that medication, which included that Tillery would need to be more isolated from germs as her ability to fight sickness will be affected. We ended that call with a plan for Cincinnati to reach out to our hospital in Knoxville to see if they are comfortable to manage the treatment so that we can stay close to home. </div><div><br /></div><div>This evening was especially hard. The conversations we had about side effects were hard to process. This chemo includes a 5% chance of causing leukemia, which is a low percentage until it's your child who already has cancer and you are thinking of another cancer being added into the mix. We were also processing what it would look like to have lowered immunity in the days of COVID19. Even with a vaccine to help others gain herd immunity, it's doubtful that Tillery will be able to receive the vaccine while on chemotherapy. Our light at the end of the quarantine tunnel was going dim. We were also thinking about the physical impact on Tillery to have to deal with vomiting, fatigue, lowered immunity, and blood transfusions. We were thinking about the mental impact on Tillery to again have to be held down for port access. How will our joy-filled Tillery handle feeling crummy for the next year? Please don't let it steal her joy!</div><div><br /></div><div><u>Thursday, September 3</u> - We took a day off of medical decisions and discussions with the team. They worked behind the scenes and we worked on processing and finding peace. </div><div><br /></div><div><u>Friday, September 4</u> - We spoke with Dr. Spiller, our local oncologist. We decided to throw some loaded questions at her since quite frankly, she's not calling the shots so we felt she would shoot us straight without an agenda. She said she hasn't had a ton of kids on this treatment but the ones she has had have tolerated it well. She's not had as much experience with them being hospitalized or isolated as what Cincinnati described to us. She is completely comfortable with this for Tillery's next step. We ended that call by deciding to stay the course. The treatment plan has been sent to insurance for approval and we have scheduled for Tillery to have a baseline MRI on 9/14 in Cincinnati. Once both of those are done, Tillery can begin treatment. </div><div><br /></div><div><br /></div><div><b>THE PLAN</b></div><div>This is a 4 drug chemo plan. 3 are oral medications that in most cases can be given at home. The 4th is an IV chemo that she has actually received before. The plan is 8 cycles and each cycle is 42 days. The first 4 days are specifically timed oral chemo doses and then on days 14 and 28 she will go to clinic for her IV chemo. We will have her port place on the first cycle's day 14 and then receive chemo that day. </div><div><br /></div><div>If you've made it this far, pat yourself on the back. It's been a long and emotional 6 weeks, specifically the past 2 weeks. </div><div><br /></div><div><br /></div><div><u><b>Our current prayer requests are: </b></u><br /><ul style="text-align: left;"><li>That we will be at peace as we begin this round of chemotherapy. </li><li>That God will give us the words to speak when we tell the children the next steps. We have waited until we have a plan so now we will be working on how and what to say to them.</li><li>That God will put a hedge of protection around our girl. We pray that she would have minimal side effects from this treatment now and in the future and that she will not be exposed to anything else that would make this a harder road that it already will be. </li><li>That God uses this new phase of our journey to continue to minister to others. We already have ideas of ways that He can use this and we cannot wait to see what He has planned!!</li></ul></div><div><br /></div><div><br /></div><div><br /></div>Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-2221573701114390047.post-20560243296460158132019-08-24T07:59:00.002-07:002019-08-24T07:59:31.521-07:00Why We Go the Extra Mile
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Mom Confession: I don’t like looking at baby pictures of my
daughter.<br />
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Let me explain.<br />
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See, when you look back at your cute, chubby cheeked kiddos,
you remember the slobbery kisses and all the sweet firsts (first laugh, first food,
first steps). When I look at baby pictures of my daughter, my eyes zero in on
the protruding, tumor filled forehead that I did not see coming. I notice that
she’s often propped up when she’s sitting or using her arm to counterbalance the
lack of strength on her right side. I see with hindsight what I cannot unsee,
my child was not well and I did not know.<br />
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Five years ago at this time, we had a 14 month old who cried
a lot and seemed to need a lot of extra cuddles to calm herself. She wasn’t reaching
her physical milestones of pulling up, standing or walking and she was
beginning to regress. Sitting and crawling became difficult and seemed to
really upset her. What was causing her to seem to be in so much pain?<br />
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On the last day of September, 5 years ago, our daughter was
diagnosed with a very large and invasive brain tumor. Immediately, all of the
struggles, delays, and tears started to make sense and the parent guilt hit
hard as we realized our child had been hurting as we were waiting on her to
catch up with her peers. The next few weeks were a blurry whirlwind that
included relocating half of our family 6 hours from home, 2 brain surgeries, a
blood clot in her brain, placement of a PICC line, a fistful of daily meds
including twice daily injections, and all of it leaving our family mentally and
physically broken. And that was just the beginning.<br />
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It seemed like the punches kept coming as Tillery stopped
eating by mouth, began chemotherapy, and had a fall that caused a near fatal
brain bleed. We lived away from home for 7 months and returned as different
people who had to rebuild ourselves as individuals and as a family.<br />
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Once we
returned home, we were only through the first phase of the treatment plan and
we continued on with chemotherapy as other complications arose. We had a chemo
that stopped working and she developed a fungal infection in her brain that
sent us back to Cincinnati by medical flight.<br />
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It was 2 years before we were able to start to create a “new
normal” routine for our family. Even then, we began to face the side effects
that followed treatment and really started to see the differences in our child
vs. her peers.<br />
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September is Childhood Cancer Awareness Month.<br />
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Every year in September, we relive it all. We remember all
that our daughter went through and all our family suffered as a result of the
childhood cancer diagnosis. We wonder what the future will be. In September, we
are reminded that even when we feel “normal”, we never fully are.<br />
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We will never apologize for the onslaught of statistics, sad
stories, and pleas for donations that blow up our social media accounts. We
will not slow down or ease in our efforts to make the future better for our child
and others. Our fight never ends because her fight never ends.<br />
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Will you join our fight?<br />
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Ways you can get involved:<br />
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1. SHARE – We will be sharing our story and stories of
others. We will be sharing statistics and information about childhood cancer. Simply
passing that information along to your friends and family helps our efforts to
reach more people and grow a community of compassionate individuals who are
aware of the impact of childhood cancer.<br />
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2. DONATE – We have multiple fundraisers going on through
the end of September and you can participate or donate to any of them. You can
also simply make a donation on our Alex’s Lemonade Stand fundraising page - <a href="https://www.alexslemonade.org/mypage/1683934?fbclid=IwAR0s4Iw-SnSk_W9Ah3Z8btCKP80ru_YG5lSSB4tHwasOj8LwmvzD2Extt1c"><span style="color: #b00000;">https://alsf.me/1683934</span></a><br />
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3. DEDICATE YOUR MILES – Alex’s Lemonade Stand started the
Million Miles Challenge a few years ago with a goal to collectively travel a
million miles to raise awareness for childhood cancer. You register by
following the link below and then set your mileage and fundraising goals for
September. Throughout the month, push yourself to go the extra mile, literally,
for kids with cancer. As you run, walk, or cycle, take some time to think about
the kids who are fighting cancer. Then share with your friends and family about
dedicating your miles to those kids and invite them to donate towards your fundraising
goal. <a href="https://www.alexslemonade.org/mypage/1683934?fbclid=IwAR0s4Iw-SnSk_W9Ah3Z8btCKP80ru_YG5lSSB4tHwasOj8LwmvzD2Extt1c"><span style="color: #b00000;">https://alsf.me/1683934</span></a><br />
<u></u><br />
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4. HOLD A LEMONADE STAND – We love lemonade stands because it’s
so simple, even the kids can participate. Our kids love serving up icy cold
lemonade and helping to share about childhood cancer.<br />
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5. CREATE YOUR OWN – The above ideas are easy for everyone
but you may have your own. Feel free to use your talents to participate in Childhood
Cancer Awareness month with your own unique touch. We would love to hear about
it.<br />
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The ultimate goal is to end childhood cancer. We won’t stop
until we reach that goal. <br />
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-84007903117965996172019-05-20T20:37:00.000-07:002019-05-20T20:37:13.859-07:00Tillery's Hustle for Hope 5k 2019 RecapIt's been hard to gather thoughts on this past weekend's Tillery's Hustle for Hope 5k. I have so much swirling around and need to sit still for a bit and get it down. Join me on my brain dump from the 3rd Annual 5k...it was a good one!<br />
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First, let me say it is an honor and a privilege to be able to share the stories of so many amazing kids. Every year, there is a flood of emotions as we look over all of the Hero Signs and think about the awesome kids and families we have met on our childhood cancer journey. It's sad to see how many signs say "in memory of" but it's nice to know that we are able to remember these kids every year at this time and share them with others.<br />
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On that subject, this year, we did something new. Every year, we take the Hero Signs from the previous year and stick a new sponsor name on the sign. This year, we realized that 4 children who had "in honor of" on their sign were no longer with us and we needed to change their sign to "in memory of". Normally, the night before, we stick new sponsor names on Hero Signs but it didn't feel right to just slap an "in memory of" on the signs. Those kids deserved a little more. <span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">During the pre race announcements, we honored the memory of the 4 kids we have lost since we started doing the Hustle for Hope.<span style="background-color: transparent;"> On Friday night, I had talked with my mom (Nana) and my Aunt Pam about helping with the sign stickers since they knew some of the kids and Joe said he would do some as well. As we were getting ready to start the announcements and I was thinking through how to lead into the signs, I saw Denise Rowe, a dear friend and the mother of Ethan, one of our "in memory of" heroes. I asked her to help me with how to talk about these signs and told her what we were doing and how it didn't seem right to just change the signs and not say anything. She had tears in her eyes and she said, "You have to do it like this. They have to know the reality.". She asked to change one of the signs and the sign my eyes saw first was for Owen Steinmann, a sweet boy who only lived 6 months but who's legacy is changing the world. Last year, Ethan's family and Owen's family came together when at the last minute, Ethan's family could not go to Childhood Cancer Action Days in Washington D.C. and they gave their spot to Owen's family to go and advocate for Tennessee kids. On Saturday morning, Ethan's mom, changed Owen's sign to "in memory of", from a cancer mama who knows exactly what that transition feels like. </span></span><br />
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<span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="background-color: transparent;"><br /></span></span>
<span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="background-color: transparent;"><br /></span></span>
<span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="background-color: transparent;">Maybe it isn't right to start the event or this post on a downer, talking about kids dying. But guess what? Childhood cancer is the number 1 disease killer of children. It is a downer. And for the 4 other oncology families who were in attendance at the race with their children, I guarantee they have felt all the fears that that statistic holds. They all had tears in their eyes as we honored the memory of the kids who did not survive. It was nice to lock eyes with others who get it as we stood before the crowd. There may have been 200 people standing there for those pre race announcements, but all I saw were my fellow oncology mamas and daddies. Our community can feel so small and lonely sometimes but when we are in a group surrounded by people who want to show love and support, it doesn't feel nearly as small or lonely. As I thought of that fact on Saturday morning, I realized our 5k is a little bit like Lighthouse in that way. </span></span><br />
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<a href="https://2.bp.blogspot.com/-j8EQL1xuzsU/XONsKis7DrI/AAAAAAAABeg/n59LGUUOgIMcCnORHLfVvJMyYp4CWpk5wCLcBGAs/s1600/60464681_10107128021888885_540154586296483840_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1281" height="320" src="https://2.bp.blogspot.com/-j8EQL1xuzsU/XONsKis7DrI/AAAAAAAABeg/n59LGUUOgIMcCnORHLfVvJMyYp4CWpk5wCLcBGAs/s320/60464681_10107128021888885_540154586296483840_o.jpg" width="256" /></a></div>
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<span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="background-color: transparent;"><br /></span></span>
<span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="background-color: transparent;">Lighthouse Family Retreat serves families living through childhood cancer by sending them on beach retreats. On retreat, families are loved and supported by a host of volunteers who give of their time, money, and talents to show these families God's love and introduce a hope in Him. We were blown away by LFR when we went on our first retreat and knew we wanted to be a part of this life changing ministry. Last year we were able to donate $7500 from Tillery's Hustle for Hope 5k to Lighthouse and this year, Tillery's Hustle for Hope 5k has raised $10,000! Amazing things will happen on the coast and we are so excited to be able to support it financially as well as through serving on Retreat 18. </span></span><br />
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<span style="background-color: white;">Two local families that we know will be going on retreats this summer. The Silenos were in attendance at our event this weekend and will be going on retreat a few weeks before us. Their supporters from #NoahNation came out on Saturday and it was great to see them rally around Noah and his family. The other local family going on retreat this summer is the Crippen family. Wyatt was diagnosed with a brain tumor a few years before Tillery and we reached out to them on the day after Tillery was diagnosed. They have been a support system for us from the start and this year, they will be on the retreat we are serving on and we will be able to give back to them. </span><br />
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<a href="https://4.bp.blogspot.com/-Y3FjA4T1z5M/XONsi4bmMoI/AAAAAAAABes/z3-xohBQuBof0EZkPvWSWAXQ4PGN9q0uACLcBGAs/s1600/IMG_2227.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="528" height="320" src="https://4.bp.blogspot.com/-Y3FjA4T1z5M/XONsi4bmMoI/AAAAAAAABes/z3-xohBQuBof0EZkPvWSWAXQ4PGN9q0uACLcBGAs/s320/IMG_2227.jpg" width="264" /></a></div>
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<span style="background-color: white;">As I'm talking about local Lighthouse families, we had another in attendance. Hattie's family came to our 5k last year while Hattie was still in the hospital. This year, they are just coming off of a Spring Break Lighthouse Retreat and Hattie's dad, John won our 5k while pushing Hattie in a stroller. So many people were amazed by his speed, especially while pushing a stroller but we knew that he wasn't pushing just any baby in a stroller. He had a stroller full of inspiration that fueled his run! It was great to talk with Hattie's family about their Lighthouse experience and we can't wait to get together with them soon to swap more Lighthouse stories. </span><br />
<span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="background-color: transparent;"><br /></span></span>
<span style="-webkit-text-stroke-width: 0px; background-color: white; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="background-color: transparent;">There is so much to say about the community that Tillery's Hustle for Hope has become. There are the usual suspects: our friends and family who have been with us since diagnosis day. They come to everything and always open their hearts and their wallets because they felt it all alongside us. They were at the hospital with us while we waited for surgeries and played with Tillery while we got a shower. They have made us meals, donated their blood, bought our lemonade, and run 5ks all in support of our girl and their support means everything. </span></span><br />
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<span style="background-color: white;">Our community also includes the people who have had the honor of meeting Tillery along the way. Many of our close friends here in Knoxville have only known a happy and healthy Tillery. They have heard the stories but can't quite wrap their head around the stories we tell actually being about the little girl they see dancing at the front of the church and learning new things in school. They love Tillery and the joy she brings and have joined our efforts to support childhood cancer organizations as they see what those organizations have done for our family. </span><span style="background-color: white;"><br /></span><br />
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<span style="background-color: white;">Our community includes the virtual runners who are scattered across the country (I sent shirts all the way to Washington this year!). Some of the virtual runners have met Tillery but many have only met her through social media and still are amazed by her and want to be a part of her event. </span><br />
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<span style="background-color: white;">All of the above people are amazing. We love you all and we appreciate you all. You have poured into our family so much and our hearts are full knowing you are always here for us. </span><br />
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<span style="background-color: white;">Now let me tell you the cool thing about the 5k...sometimes it's the random people that bring about the coolest stories. See, after the 5k is over, we spend the rest of the weekend swapping stories about people we met and stories we heard. Our family and friends walk around and talk to people at the event and ask about how they heard about us and share a little of our journey. </span><br />
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<span style="background-color: white;">This year, we met CourtSouth Ron, who randomly sent me an email the night before to ask if we needed volunteers. I didn't respond because I was a bit overloaded on Sat morning so Ron just showed up and asked what he could help with. By the end of the event, Ron was family. He put out Hero Signs, talked to Tillery's family about her story, cheered for runners, and took selfies with Til. When he left us on Saturday morning, Ron went to CourtSouth, the gym where he works and changed the sign to honor our girl and many other kids we talked about that day.</span><br />
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<span style="background-color: white;">We were pumped to see the Morristown crew. They are a group that our dear friends Daisy and Cameron round up every year and their support is pretty cool. The first year of our 5k, Daisy and Cameron were engaged, last year they were newlyweds, and this year Daisy was running for two. We can't wait for next year when they show up with a stroller!</span><br />
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<span style="background-color: white;">Tillery had 3 people she really wanted to come to her 5k. While many people get directly invited by Tillery, these 3 people Tillery asked about daily. </span><br />
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<span style="background-color: white;">"Is Miss Stovall coming to my 5k?" Tillery loves her Kindergarten teacher and was so excited that she came and she even brought her family, too. </span><br />
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<span style="background-color: white;">"Is Baby Mae coming to my 5k?" Mae is the little sister to Tillery's friend Jax, who we met in Cincinnati. When Jax passed away over 3 years ago Tillery lost a playmate so she is thrilled to be able to play with his new sister Mae. Currently, Mae is really mostly interested in eating her own hand but Tillery said "she eats her fingers so cute!"</span><br />
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<span style="background-color: white;">"Is Connor coming to my 5k?" Connor is the kicker for the Bearden Bulldogs football team and Tillery was able to be an honorary team captain with him back in the Fall to go out on the field for the coin toss. Connor raises money for Alex's Lemonade Stand by having people pledge donations per point he scores and Tillery and Connor have struck up a great friendship since then. Not only did Connor come to her 5k, but he brought others from the Bearden Bulldogs to support. </span><br />
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<a href="https://2.bp.blogspot.com/-PAxYMpAR7vw/XONuBte6xhI/AAAAAAAABgM/Hy7S1FsMa8ga3TfJO62wpIgT1vzdE6leQCLcBGAs/s1600/60350343_10219304655716685_4469475772901359616_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://2.bp.blogspot.com/-PAxYMpAR7vw/XONuBte6xhI/AAAAAAAABgM/Hy7S1FsMa8ga3TfJO62wpIgT1vzdE6leQCLcBGAs/s320/60350343_10219304655716685_4469475772901359616_o.jpg" width="320" /></a><a href="https://2.bp.blogspot.com/-YulNKmw91Q0/XONuCkqMszI/AAAAAAAABgQ/Qq58Wmzw_KEzMIB_2Wlbf1b3t69bWJJlgCLcBGAs/s1600/60497627_10219304594555156_7712057703492747264_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://2.bp.blogspot.com/-YulNKmw91Q0/XONuCkqMszI/AAAAAAAABgQ/Qq58Wmzw_KEzMIB_2Wlbf1b3t69bWJJlgCLcBGAs/s320/60497627_10219304594555156_7712057703492747264_o.jpg" width="320" /></a></div>
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<span style="background-color: white;">We also had some special guests with us from our Ronald McDonald House days. </span><br />
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<span style="background-color: white;">The Yelverton family did a family donation in memory of their mother/grandmother Mary Yelverton and a big group came out to run in her memory. Her granddaughter Dominick was at Cincinnati Children's and the Ronald McDonald House with us back in 2014. We were all in the PICU together during some pretty scary days for both our families and formed bonds during that time. </span><br />
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<span style="background-color: white;">Lisa, Whitney and Finnley came all the way from Iowa to participate with us this year. We met in the playroom of the Ron when baby Finn was very curious about Tillery's helmet. Friday night, the girls played together and then started the race on Saturday morning together. Finnley's grandmother, Lisa has participated in all of our past 5ks virtually so it was cool to have her here in person. </span><br />
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<span style="background-color: white;">The Wolfe's are special RMH friends. We met Haven and Mallory on Tillery's first day at the Ronald McDonald House after she was just discharged from the hospital. Haven was the reigning Miss Pre Teen USA and her platform has always been the RMH so she was there in crown and sash meeting the kids. Haven's shiny crown drew our attention and her kindness won our hearts. She and her mom volunteered often at the RMH while we were there and they would always visit us or leave notes if they missed us. It was so great to have them visiting us in our real home. </span><br />
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<span style="background-color: white;">There are so many others I should probably mention. Shout out to all the new people who came and joined our community. It's great to see this event growing bigger each year. </span><br />
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I've included photos that I've collected (*stolen) from others. I took exactly 1 photo the entire day. We had a photographer, Christine from Signature Moments who volunteered her time and talent on Saturday and we will share her photos when we have them.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-7355684504562143502018-07-31T19:04:00.001-07:002018-07-31T19:04:56.308-07:00Making Lemons Into LemonadeEver heard the saying, "God doesn't give you more than you can handle."?<br />
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Ever thought that statement isn't very comforting?<br />
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Two years ago, I wrote <a href="http://hopetiltheresacure.blogspot.com/2016/07/god-helps-us-handle-what-we-are-given.html">this blog</a> with my thoughts on this saying because it's been said to me so many times and rather than being a comfort, it's just frustrated me.<br />
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The reality is, LIFE has given us more that we can handle! It was God who helped us navigate through the things that were too big for us.<br />
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In fact, life has given us a lot of lemons:<br />
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Tillery was diagnosed with a brain tumor. 🍋Lemon<br />
Tillery had to undergo 16 surgeries and 2 years of chemotherapy. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">🍋Lemon</span><br />
Tillery was delayed in standing, walking, eating, and learning. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">🍋Lemon</span><br />
We have had to travel for treatment. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">🍋Lemon</span><br />
We know that her tumor can grow again. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">🍋Lemon</span><br />
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Those lemons are heavy. Sometimes they have buried us and sometimes we thought we couldn't handle any more...right before another was thrown our way.<br />
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BUT, we did the best thing we could with life's lemons...We made lemonade!<br />
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<span style="color: #666666;">Tillery was diagnosed with a brain tumor. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">🍋Lemon</span></span></span></div>
<span style="background-color: white; color: black;">We now are part of a pediatric brain tumor parent support network and we help guide other parents through the beginning stages of diagnosis and we have formed a community of other families who can understand us. </span><br />
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<img border="0" data-original-height="368" data-original-width="301" height="200" src="https://2.bp.blogspot.com/-50jhXINWHEI/W2EPOlbcWOI/AAAAAAAABWY/-srM5qhJeYQBV7d5uF7dlgR5NsnkcG3_QCEwYBhgL/s200/glass-clipart-drawn-18.jpg" width="163" />Lemonade!</h2>
<span style="color: red;"><span style="color: magenta;"></span><span style="color: black;"></span><span style="background-color: yellow;"></span><span style="background-color: white;"></span><span style="color: #6aa84f;"></span><span style="color: #38761d;"></span><u></u><span style="color: #0b0129;"></span><u></u><u></u><u></u><u></u><br /></span>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: #666666;">Tillery had to undergo 16 surgeries and 2 years of chemotherapy. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">🍋Lemon</span></span></span></span><br />
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We hate all that Tillery has had to endure but through her treatment, we have learned to focus on the things that are really important in life. We have found laughter in the surgical waiting room and PICU and during chemo infusions and it's taught us to laugh through other stressors of life. </div>
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<a href="https://2.bp.blogspot.com/-50jhXINWHEI/W2EPOlbcWOI/AAAAAAAABWY/-srM5qhJeYQBV7d5uF7dlgR5NsnkcG3_QCEwYBhgL/s1600/glass-clipart-drawn-18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="368" data-original-width="301" height="200" src="https://2.bp.blogspot.com/-50jhXINWHEI/W2EPOlbcWOI/AAAAAAAABWY/-srM5qhJeYQBV7d5uF7dlgR5NsnkcG3_QCEwYBhgL/s200/glass-clipart-drawn-18.jpg" width="163" /></a>Lemonade!</h2>
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<div style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: #666666;">Tillery was delayed in standing, walking, eating, and learning.<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: #666666; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: #666666; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">🍋Lemon</span></span></span></span></div>
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<span style="color: black;">Often, Tillery can't do things her peers can do. But when I watch her stumble or fall behind, I see her brush it off. She doesn't focus on what she can't do or what other people do better, she just does what she can and is proud of what she is able to do. </span></div>
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<a href="https://2.bp.blogspot.com/-50jhXINWHEI/W2EPOlbcWOI/AAAAAAAABWY/-srM5qhJeYQBV7d5uF7dlgR5NsnkcG3_QCEwYBhgL/s1600/glass-clipart-drawn-18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="368" data-original-width="301" height="200" src="https://2.bp.blogspot.com/-50jhXINWHEI/W2EPOlbcWOI/AAAAAAAABWY/-srM5qhJeYQBV7d5uF7dlgR5NsnkcG3_QCEwYBhgL/s200/glass-clipart-drawn-18.jpg" width="163" /></a>Lemonade!</h2>
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<span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: #666666;">We have had to travel for treatment.<span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">🍋Lemon</span></span></span></span><br />
<span style="color: black;">Because we had to travel for treatment, we had the opportunity to stay at the Ronald McDonald House. We built a community there with other families facing their own trials and we leaned on each other for support. We learned to be real with people around us, to accept help when we needed it, and to be a help to others when we could. </span><br />
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<a href="https://2.bp.blogspot.com/-50jhXINWHEI/W2EPOlbcWOI/AAAAAAAABWY/-srM5qhJeYQBV7d5uF7dlgR5NsnkcG3_QCEwYBhgL/s1600/glass-clipart-drawn-18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="368" data-original-width="301" height="200" src="https://2.bp.blogspot.com/-50jhXINWHEI/W2EPOlbcWOI/AAAAAAAABWY/-srM5qhJeYQBV7d5uF7dlgR5NsnkcG3_QCEwYBhgL/s200/glass-clipart-drawn-18.jpg" width="163" /></a>Lemonade!</h2>
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<span style="color: #666666;">We know that her tumor can grow again. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="-webkit-text-stroke-width: 0px; background-color: transparent; display: inline; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">🍋Lemon</span></span></span></div>
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<span style="color: black;">We have already survived treatment once. It's not new territory and we are more knowledgeable and confident now than we were in the beginning. While it would be really hard to go back, we know we fought through it once and we can do it again. </span></div>
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We've been thrown a lot of lemons over these past almost 4 years. We've also made a lot of lemonade from what we've been given. Many of you who have followed Tillery's story have watched Tillery make lemonade from lemons. Many people have reached out and thanked us for sharing and told us how Tillery's story has helped them through difficult times in their lives.<br />
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So now, we want to invite you to join us in turning lemons into lemonade!!<br />
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This September, as we support Alex's Lemonade Stand Foundation, we want to share stories of people turning lemons into lemonade. But not just any people...YOU!! We are inviting you to send us a private message or email (hope@tilleryisloved.com) with your inspiring story of a time when you turned lemons into lemonade. We will be picking stories to share on Tillery is Loved each day in September and hope to compile all the stories into a booklet that we can make available later as an end of year fundraiser/holiday gift idea.<br />
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We can't wait to read everyone's stories and be inspired! Get writing and let's turn a lot of lemons into some sweet lemonade!<br />
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*If you aren't a confident writer, don't let that stop you! We are more interested in your content than your writing and can help you craft your story, just reach out to us!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-21241463517387108042018-07-22T13:40:00.000-07:002018-07-22T13:40:26.277-07:00We've Got To Do It All<div style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
We are a week out from our amazing trip to the North Carolina coast to serve at the Lighthouse Family Retreat. We were able to physically and emotionally serve families living through a childhood cancer diagnosis. It was humbling and fulfilling and so, so good for our hearts and souls. </div>
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This past week we also topped $50,000 raised for Alex's Lemonade Stand Foundation through our TIL Fund in honor of Tillery. All money raised through this fund is used for pediatric brain tumor research grants to find better and safer treatment options and hopefully, ultimately treatment options for all pediatric brain tumors. </div>
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This week I also started doing some research on candidates running in the upcoming elections. Our representative to the House and one of our Senators are retiring so we have some newbies heading to Washington D.C. and we need them to be on board with the STAR Act momentum and to be on our side of healthcare issues. </div>
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As I was reflecting today over these things, I realize it takes all these things. We need to help fund and volunteer with Lighthouse to show families God's love and to help lead them to healing and hope they can find through Christ. We need research for much, much better because our family being a best case scenario in the pediatric brain tumor world after 16 surgeries, 2 years of chemo, and still a remaining tumor the size of a fist in our daughter's brain, seems lacking. And we need politicians to help on a large scale with regulations across this land to help kids get better access to better treatments and to follow up on them into survivorship.</div>
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We've got to do it all!</div>
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So, we are in the early stages of plans for next year's Tillery's Hustle for Hope 5k to benefit Lighthouse Family Retreat. We are looking at dates and a few possible "upgrades" for next year. We are inviting our friends, family, and any Tillery fans who are interested in serving with us next summer to reach out and let us know. We are building a team to come to the coast and love on some families and be what Jesus calls us to be, His hands and feet. </div>
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And we have to keep fundraising for research and shouting awareness facts. Right now, private donations are the #1 funder of childhood cancer research, not federal funding or pharmaceutical companies, just people with big hearts who open their wallets to the cause. While we hope that the STAR Act will help get more funding directed to childhood cancer and specifically to pediatric brain tumor research, we also witnessed first hand back in April how slowly these things move. There is a lot of work to be done and we will keep rallying our friends and family to fund research because these kids need better now! All that said, we have set up our Alex's Million Mile Team to again dedicate our miles in September to childhood cancer. <a href="https://www.alexslemonade.org/mypage/1453020">Here's the link to join our team or make a donation. </a>We are also looking to do a kickoff event on September 1st to do the first mile together. Details to come on that. </div>
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Finally, regardless of your politics, we can probably all agree that childhood cancer is bad and there is more that can be done to help these kids. The STAR Act passed the House and Senate and was signed by the president this year (YAY!). While that's awesome, we still have the hurdle of funding for the STAR Act. In the grand scheme of federal funding and our national budget, our funding request is very insignificant. The STAR Act is not asking for more research funding but just to add a pediatric voice to the decision making table. It also has plans to give better access to treatment for kids across the country and tracking of survivors to get a better snapshot of survivorship and it's challenges. The funding amount is small but still requires votes in the House and Senate at times when there will be seats changing over and new politicians ready to shake up Washington. Our issue is bipartisan but it still takes work to get it to a vote. So we will be reaching out to candidates and asking them to support this vote if/when they make it to Washington. And once the election is over and these newbies are getting settled into their new plush offices, we will be calling and writing them and reminding them of this issue that is so close to our hearts. And come April, the Phillips family will again hit up Capitol Hill to make sure the STAR Act gets the funding it needs. </div>
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We've got to do it all!</div>
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BUT, we've got you to help!</div>
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Thanks for your continued support. Sorry we are always asking for stuff. But as you are seeing, curing childhood cancer seems to be a big undertaking. Glad you guys are joining us on this mission!</div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-56566799445152848722018-06-01T17:29:00.001-07:002018-06-01T17:29:37.313-07:00Birthday Lemonade Stands<div style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
June 6, Tillery will turn 5 years old! In the Fall, she will start Kindergarten! When she was diagnosed, we didn't know if those things would ever happen. So we are asking you to celebrate with us by holding a Birthday Lemonade Stand! </div>
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What I mean by a Birthday Lemonade Stand is a blend of lemonade stand and birthday party décor! You can have a party and invite friends to come and donate to ALSF or hold a lemonade stand while wearing birthday party hats. You can hold your stand in your front yard or in front of a business or anywhere you choose. Get creative!! We would love to see pictures and see how you hold your Birthday Lemonade Stand!</div>
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Remember, we are celebrating Tillery's birthday and all the birthdays of kids with cancer. And even celebrating the birthdays of the kids we have lost along the way. Through our fundraising, we can find better treatments for kids!</div>
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Here's the fundraising link for our Summer Lemonade Stands. https://www.alexslemonade.org/mypage/1458627</div>
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Hold your stand anytime between Tillery's big 5th birthday and the start of Kindergarten!!</div>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-21799774722936690562018-05-28T11:43:00.001-07:002018-05-28T11:43:21.510-07:00Childhood Cancer STAR Act Passed!!Last week, something HUGE happened for Tillery. It wasn't our awesome fundraiser or her successful surgery, I'm talking about something much, much bigger.<br />
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THE CHILDHOOD CANCER S.T.A.R. ACT PASSED THE HOUSE OF REPRESENTATIVES!!!<br />
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You may remember that our family went to Washington D.C. a little over a month ago to meet with Congress members to talk about the importance of passing the Childhood Cancer S.T.A.R. Act. It had already passed the Senate unanimously and had about 80% of the House of Representatives signed on as co-sponsors of the bill. Voting was really just a formality but it needed to happen! So our job was to talk it up and ask everyone to push the appropriate members to bring the bill to a vote.<br />
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Last Tuesday, the House of Representatives finally brought the S.T.A.R. Act to a vote and it again passed unanimously!! Now, we just need President Trump to actually sign it this week and then we move on to the next stage...funding it!<br />
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This was a HUGE thing for our child and for so many others. This bill looks after these kids in the present and in the future and with Tillery still having her mass, there is always the chance that her tumor could grow again. If it grows, the STAR Act is going to help get better treatment options out there. And even if it doesn't grow, the STAR Act is going to be looking at the long term health of kids who have been on chemo and will help her as she ages.<br />
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We fundraise for childhood cancer research and we will continue our efforts but the S.T.A.R. Act may be able to open up funds that are much larger than anything we can imagine.<br />
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As I said above, we do have a few more hurdles:<br />
1. President Trump has 10 days to sign the S.T.A.R. Act to keep things rolling.<br />
2. We need Congress to again get together and agree to fund the S.T.A.R. Act, which is a pretty small cost compared to most other things that are brought before them for funding.<br />
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As always, we have a way that YOU can help! Use this link to send a message to President Trump to ask him to sign the S.T.A.R. Act. <a data-lynx-mode="origin" data-lynx-uri="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.whitehouse.gov%2Fcontact%2F&h=ATPU-7Xg-LzYOW3z3ERWBqTCX45tO697GzO6PzcqXj4O6O8EvXDNAdv5YBEth4LQ_104Em2sBZ6pzU8eYlaKi-mSzRGkdvyla94hZBRX4bl3iGxtnwvaoh8VuPkmZpepV9iE" href="https://www.whitehouse.gov/contact/" rel="nofollow" style="-webkit-text-stroke-width: 0px; background-color: transparent; color: #365899; cursor: pointer; font-family: Helvetica,Arial,sans-serif; font-size: 14px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;" target="_blank"><span style="font-family: Helvetica,Arial,sans-serif;">https://</span><wbr style="color: #365899; cursor: pointer; font-family: Helvetica,Arial,sans-serif; text-decoration: none;"></wbr><span class="word_break" style="display: inline-block; font-family: Helvetica,Arial,sans-serif;"></span>www.whitehouse.gov/contact/</a><br />
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Once President Trump signs and we move onto the next hurdle of how to fund the S.T.A.R. Act, we will let you know ways you can support that, as well.<br />
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Remember, this isn't a Republican or Democrat issue...this is a children's health and safety issue!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-6159586679413212112018-05-26T16:36:00.000-07:002018-05-26T16:36:00.392-07:00So Big and So SmallWe've had an intense week and I have a lot I want to share but I'm gonna have to do that over a series of posts so stand by for a few blog posts with updates over the next few days/weeks. Today, I want to talk about something that struck me throughout this hospital stay.<br />
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We arrived at Cincinnati Children's Hospital Monday morning at 5:30 a.m. for Tillery's 16th surgery. She walked across the street and up the sidewalk and all the way to the desk by herself. When we got onto the 3rd floor, Tillery went straight to find the TV that shows cartoons and when they called her name, she navigated the back halls to do her height and weight check without instruction. As I watched her, I kept thinking how big she has gotten. I reflected on all the times we have brought her over in a stroller and the days when she needed instruction on where to go and what to do. But she's grown up in this hospital and she isn't the same fragile baby we first came here with. Now, she's a fierce warrior child who has fought her way to survival for 3 and a half years. Now, she's so big!<br />
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Then they put her in the hospital gown and put her on the bed. She laid back and they gave her a blanket to cover up with as she watched a movie. The same day surgery room became a revolving door of nurses and doctors coming through with many of the same questions and asking for repeated signatures. They went through lists of risks and emergency plans. We signed consent to treat, consent to give blood, and consent to save her life. As we went further down the rabbit hole of surgery prep, I would look over at Tillery laying on that bed and think, but she's so small!<br />
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When we started to roll her down the hall to the operating room, I remembered the 15 previous times we had walked this walk. This isn't our first rodeo and this surgery didn't come with the fears that many of those other surgeries came with. This time was different because we have watched her be a survivor of surgery for 15 previous surgeries. So I start to think, she's so big!<br />
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But rolling her down the hall, we passed many doctors, nurses, and other hospital staff and they all make the same face. It's a face that says both "she's so cute" and "bless her heart" and really communicates the thought...She's so small!<br />
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After surgery, we were called back to the all too familiar post op recovery area, where Tillery lay on a bed, sleeping. She is much bigger than previous times and fills more of the bed. It's not a baby laying there, but she really looks like a kid. Her bandaged head isn't as scary as it has been other times because it doesn't look as massive as it has in the past. She's bigger and it's all a little more comfortable. But then, I sat back and looked at Joe looking down on his little girl and I see the relief in his eyes. Even though anesthesia and surgery are nothing new, as parents, we hold our breath until we see them again on the other side, no matter how many times we've done it previously because they are still our children and to us, they are still so small.<br />
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This paradox of her being both big and small continued to play out throughout our stay. She was so big when the nurse asked if she needed anything and she responded with a detailed answer of her needs. She was so small when she felt strange and cried without knowing the words to communicate what she was feeling. She was so big when she wanted to go for a walk down the hall but so small when she got out there to walk and you saw her tiny self in her tiny pajamas walking down that big hallway. She was so big when she was asking for toys or wanting to watch a favorite movie but so small when she was tired and needed breaks to rest.<br />
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Tillery is only 4 years old but can navigate the hospital better than most adults. After a major surgery that caused swelling, fevers, and even seizures, Tillery took nothing stronger than Tylenol for post op pain. When they came in to remove the bandage and they asked if they should do it fast or slow, Tillery requested fast. She's strong and she's brave and she's tougher than most of us would be in her shoes. But she didn't have a choice in the situation she has faced. She probably wouldn't have chosen to face the pain and hardships that she does but rather, has had to adapt to them. She had to learn to be so big, even though she is so small.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-2221573701114390047.post-74752932849597426432018-04-26T18:55:00.000-07:002018-04-26T18:55:05.862-07:00Adventures on Capitol HillSettle in friends, this is gonna be a long one...<br />
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We spent the past few days in Washington D.C. and posted a few photos and updates on Facebook but wanted to give a more detailed account of our adventures here on the blog (for you and also for us to remember the whirlwind trip we just had!).<br />
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To briefly back up, a few weeks ago, a friend we met through the Ronald McDonald House and Cincinnati Children's reached out to us through Facebook. She works for the American Childhood Cancer Organization and does a lot of very cool things to further research and awareness. She is also active with the Alliance for Childhood Cancer and invited us to join them in D.C. for Childhood Cancer Action Days to help lobby for the S.T.A.R. Act. It sounded like a great opportunity for our family to be a part of so we scrambled to make it happen.<br />
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After a very long road trip, we arrived in Washington D.C. at about 11:00 p.m. Sunday night. We were staying at a hotel about 2 miles from the hotel that was hosting training and have never used public transportation with kids before. (Mama was a bit nervous about how the morning was going to go!) Luckily, our excitement got us all up and out quickly in the morning and there was a row of taxis in front of the hotel and we were easily able to hop in one and get across town.<br />
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Another family we know from Tennessee was also joining us for Action Days, Amanda Dean and Justin Steinmann. We have shared the story of their sweet son Owen with you in the past. He was diagnosed with an A.T.R.T. brain tumor at 3 months old and passed away at only 6 months old. There story is heartbreaking but not uncommon in the childhood cancer world and families like theirs drive us to want to fight even harder. It was such a blessing to have them on this journey with us and it was fun to get to spend the day in training with friends.<br />
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We dropped the kids off in a room next to the room for our training. The kids room was staffed with oncology nurses and child life specialists. There were crafts, toys, and all the medical supplies an oncology kid would want to play with! I found Tillery pretending to access ports once and later found her using syringes as water shooters. These people know what the kids like!<br />
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I'll give you the Cliffs Notes version of what we learned in our training...<br />
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- The S.T.A.R. Act (Survivorship. Treatment. Access. Research.) is the most comprehensive childhood cancer bill ever. You can learn more about it <a href="http://stepupforchildhoodcancer.com/">here</a> or read the bill <a href="https://www.congress.gov/bill/115th-congress/house-bill/820">here</a> .<br />
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- Big things this bill will do: Give a voice to childhood cancer patients by mandating a pediatric oncologist sit on the board that decides how government funded research dollars are allocated and create a database for childhood cancer so that across the country, doctors can compare cases they are seeing and work together on treatment plans.<br />
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- Big things this bill won't do: Directly give more money to childhood cancer research. I say this because a sort of rally cry in the childhood cancer world is "more than 4" referencing the NCI's allocation of around 4% of their research dollars to childhood cancers. While we would love more money allocated, that is what placing a pediatric oncologist at the table will hopefully accomplish. We learned that there is a group of individuals who represent the different types of cancer that comes together annually and asks Congress for one collective amount of money for research. Congress doesn't break out the allocations but leaves that to the medical professionals to sort out which research is deemed to be the most important. (Let's be honest, politicians should not be making the decisions on which cancers are priority or which research projects have merit.)<br />
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- In 2018, there is an increase of federal research funding to the NIH and NCI. We also learned that current plans for 2019 will decrease this amount but nothing is set on that yet so it can still change.<br />
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- We learned a little about some of the research that is being done with NCI funds through the Children's Oncology Group.<br />
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- We learned about another piece of legislation, the RACE Act, that recently passed and is focused on research to accelerate cures and equity for children.<br />
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Together, we were a group of 233 individuals directly impacted by childhood cancer. We came from 35 states and were set to attend 181 meetings on Capitol Hill in a single day. We all had the same message: Pass the S.T.A.R. Act.<br />
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The S.T.A.R. Act UNANIMOUSLY passed the Senate about 3 weeks ago and as of Monday, had the support of 85% of the House of Representatives. To the Senators we were meeting with, our message was "Thank you" and "Please fund the S.T.A.R. Act once it passes the House." To our Representatives, our message was, "Please help push the S.T.A.R. Act to a vote."<br />
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That was our Monday. It was long and exhausting but we were ready for action!<br />
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Along with our friends Amanda and Justin, we also had a few others from Tennessee to make up our Tennessee contingent. We had a researcher from Memphis who is focused on pediatric optic tumors, an area that is greatly underresearched and underfunded. We also had a mother and daughter from Chattanooga. Savannah is a strong, brave 11 year old osteosarcoma survivor who said in meetings, "I'm here so other kids don't have to go through what I went through." Just remembering her little voice saying it brings tears to my eyes!<br />
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As a group, our children have been treated at St. Jude, Vanderbilt, Erlanger Children's, and East Tennessee Children's. We represented 4 of 9 voting districts in the state and both Senator's hometowns.<br />
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Our first meeting was with Rep. John Duncan's office and it was just our family for this meeting. The Congressman wasn't available for the meeting but is already a co-sponsor of the S.T.A.R. Act and the staff member we met with let us know we have his full support. We spoke with her about the importance of pushing the bill to a vote and gave her a folder with information about the S.T.A.R. Act but more importantly, pages of stories of kids from the 2nd District who are cancer patients, survivors, and those who have passed away.<br />
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After our meeting with our district's office, we headed to meet with Senator Bob Corker's office. This meeting included our whole Tennessee group. This time we met with a staff member who handles healthcare related issues for the Senator. We went around the table and each told where we live and then our reason for being there. Savannah's mom told her story, we shared Tillery's story, our researcher shared the struggles of herself and her peers who want to find better treatments for our children but don't have the means to do it, and then Owen's parents wrapped up our meeting by telling the story of their perfect and healthy baby boy who was taken from them. Owen's mom walked around the table to sit beside the staff member and share pictures and stories of Owen. Again, a folder was left with information about the S.T.A.R. Act and with pages of stories of children from across the state. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">(For those who wonder what the Phillips children did during the meeting, they were given snacks by a nice staffer at the front desk and noisily ate potato chips and gulped water during the meeting until I finally had to take it away to keep them quiet.)</span><br />
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The other members of our Tennessee group met with a few other representatives and then we all met back up for a meeting with Senator Lamar Alexander's office. We were in a small conference room with 2 of the Senator's staff members and so Joe and the children sat off to the side since the table was small and the kids were tired. At one point in the meeting, I heard loud breathing and looked over to see that Tillery had fallen asleep on Joe! (Surely she's not the first person to fall asleep during a long day of meetings on Capitol Hill!)<br />
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Again, a long and exhausting but very productive day! <br />
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We are now pulling all of our notes and business cards together to send follow up correspondence. We will be following up directly with the people we met with but also encourage you to reach out to your representative's office to ask them to help us get the S.T.A.R. Act to a vote. <a href="http://stepupforchildhoodcancer.com/sponsor-map/">Here is a map</a> to help you identify your representative and get contact information for them. Let them know you are in their district and that the S.T.A.R. Act is important to you and you would like them to help push it to the floor for a vote. You can call or email them (or both).<br />
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Thanks for hanging with me for my super long post. Here are some photos from the trip.<br />
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Ready to learn!</div>
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Training with the Alliance for Childhood Cancer</div>
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There were a few walls plastered with stories of children with cancer. </div>
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The Tennessee group getting to know each other.</div>
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Luke said just a few weeks ago that if he ever went to Washington D.C., he would want to see the White House. It's nice to go ahead and check things off the list! </div>
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These helicopters flew right over our heads and then one landed on the lawn of the White House (see the above photo). We think this might have been the French President who was arriving that day. </div>
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The Washington Monument is 555 ft. tall. These kids do not care. </div>
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They really enjoyed sitting on this grassy hill.</div>
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Who's excited to go to the Capitol tomorrow? Apparently just Joe. </div>
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Tennessee Takes on D.C.</div>
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Meeting #1 at John Duncan's office. (Note: As soon as the meeting started, Tillery pulled her hairbow out.)</div>
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Meeting #2 Bob Corker's office. About 50 photos were taken here and this is the best we have to work with!</div>
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During a break between meetings, the kids found a sign promising "small kids" in the area and we went on a search. None were found so we decided they were the kids the sign referenced.</div>
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Meeting #3 Lamar Alexander's office. </div>
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Lamar Alexander wins for coolest office décor!</div>
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This is what being tired of meetings looks like. </div>
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This ridiculous selfie was taken while riding on a crazy tram thing that runs between buildings under the Capitol Building. We needed an escort to get on and had to go through extra security clearance.</div>
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This is the goal - Get the S.T.A.R. Act to The House of Representatives!</div>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-75808501468847268332018-04-10T19:22:00.000-07:002018-04-10T19:22:08.080-07:00Exciting Things in Our Future<div>
Today had a few big milestones as we head into a season of milestones. </div>
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First, we registered Tillery for Kindergarten! I really did mean to follow up and write an update after her neuro-psych testing but it seemed like testing results and decisions kept dragging out. Upon discussions with the psychologist from Cincinnati and a crew here in Knox County, we are moving forward with Kindergarten with the thought that if the first year is tough or she lags behind, we will have her repeat it, if needed. According to the testing, Tillery has the cognitive ability to learn but she does have some obstacles that many of her peers won't have so we are working on a 504/IEP plan to have in place when she starts Kindergarten to make sure she has all she needs to be successful.</div>
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The second milestone of the day was a bittersweet (temporary) end to gymnastics. Tillery has made huge strides with physical skills and confidence over the past year in gymnastics and we are so proud of her! This wasn't goodbye forever to gymnastics, we are just taking a break because we have a busy season coming up in our lives and we will rarely be able to make it to the gym. </div>
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All that said, let me fill you in on what the Phillips family has coming up over the next few months! We will be continuing to celebrate how far Tillery (and our family) has come and will continue our fighting back against the cancer that tried to knock us down!</div>
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Next week, we go back to Cincinnati for our quarterly appointments and scans. If the tumor is stable, we hit a big milestone as we will step back to doing these appointments only 3 times a year. It's scary to add more time between these appointments because the reassurance that all is still well is really good for us mentally. But the extra time between appointments means the team is confident in her healing and in our ability to spot trouble if it were to arise. </div>
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After our trip to Cincinnati, we head to Washington DC, where we will be joining the Alliance for Childhood Cancer for Action Days at the Capitol. We have been talking for years about the STAR Act and asking you to call your local Congress representatives and ask for their support. Now, we are actually going directly to them, face-to-face! We will be sharing our family's story of living through childhood cancer and all 4 of us will have the opportunity to share...even Luke and Tillery! Not only will we be advocating for many of our friends here at home, we will also be taking their stories with us in the form of fliers of children we know across Tennessee (and a few special buddies from other states). We will be their voice as well and will be able to, for the first time, make some strides in the political side of childhood cancer research. We are beyond thrilled to have been invited to do this and cannot wait to share all about it with you when we return!</div>
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We will return from our travels and Tillery will finish out Pre-K at a school that has been so great to her. Fort Sanders is a special little school full of love and support and we will miss being a part of that community. It's been the perfect place for Tillery these past 2 years!</div>
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As Tillery wraps up school, we also have 2 big fundraisers happening in May. Go Gray Sunday will be May 6. This is the second year we are doing this event and last year we had 17 churches participate by wearing gray, sharing awareness facts of pediatric brain tumors, praying for families and children affected, and even fundraising. We look forward to continuing to grow this event annually. It's been great to share with our pediatric brain tumor community about the love of churches who are supporting them. (For more info, visit GoGraySunday.com.)</div>
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Then, May 19th will be the second annual Tillery's Hustle for Hope 5k. Last year, our inaugural event raised $10,000 for Alex's Lemonade Stand Foundation to fund pediatric brain tumor research. This year, Lighthouse Family Retreat will be the recipient of funds raised, as we give back to the organization that planned and funded our beach retreats for the past 2 years. We love what we have witnessed Lighthouse do for our family and other families we were on retreats with. We are excited to support their ministry this year financially and also with our time later this summer. (For more info or to register for the 5k, visit HustleforHope5k.com.)</div>
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The week after the 5k, Tillery will have her next surgery. Her left bone flap has been sunken since her tumor debulking surgery last March. The plan for this surgery is to push the piece of bone forward and attach it to the front of her skull to hopefully have it fuse and grow with her. This is a fairly minor surgery in Tillery's world but still involves safely covering her brain and there are always many risks involved with those surgeries. </div>
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As Tillery is healing from surgery, we will make our annual trip to Lake Junaluska for Joe's UMC conference. In year's past, we have collected pop tabs and sold lemonade during conference but I think this year, we will take a year off from that side and just allow it to be a restful week for the kids and me. (Holston Friends, we will still gladly accept bags/boxes of tabs if you have them and if anyone wants to give us donations for our fundraising efforts, we will take those too!)</div>
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In July, we are excited to be returning to the sand with Lighthouse Family Retreat. The past 2 years, we were a "Retreat Family", paired with a "Family Partner" who takes all the stress/work out of vacationing. This year, we will be serving as a Family Partner to a Retreat Family, meaning we will be paired with a family who has a child currently in treatment. We will serve their meals, clean their condo, play with their children, and Joe and I will have an extra role as shadows to the parent group meeting time. We will be in training this year to return in the future to lead this special group time when 10-12 sets of parents come together to share their journey and help each other find rest and healing through Christ. The families share their highs and lows and it only takes a few hours into the retreat before the whole group becomes one big family. We can't wait to meet our 2018 Lighthouse family and build bonds like we have the previous years. </div>
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Once we return from the beach, it's back to reality in a really fun, new way...Kindergarten! Tillery will be at Luke's school and he's ready to show her the ropes and help her navigate this next phase. </div>
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As all of these things happen over the next few months, we will be sharing with you all. It's cool to have this Tillery is Loved community that has followed us through our journey. We are excited to share these highs with you, as you have carried us through many of the lows. </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-46865827704534308862018-01-19T19:19:00.003-08:002018-01-19T19:19:52.991-08:00January 2018 RecapEvery 3 months, we head to Cincinnati for Tillery's follow up appointments and every January, we end up travelling in snow. This week was no different!<br />
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Tuesday, Knoxville schools were closed for weather and everywhere between here and Cincinnati looked snowy. The trip took longer than usual and was more intense than normal because of weather but we arrived safely Tuesday afternoon to our "home away from home".<br />
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Wednesday morning, we headed to the hospital for imaging. In addition to the normal brain MRI to measure and evaluate the tumor, she also had a 3D head CT to get a good look at the bone flap on the left side. Tillery has had many CT scans taken over the past 3 years and never needed to be under anesthesia. This time, however, when we tried to lay her on the table she had a total meltdown. The longer we are away from the hospital setting, the more things affect her and it makes me wonder what flashbacks she might be experiencing and what fears she has in her little mind. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Add CT tables to the list of things that now give Tillery anxiety. </span><br />
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The team quickly decided that we had time and an anesthesia team already on hand so we took a breather and came back to the room and with me sitting on the table with her and a friendly Child Life Specialist holding an iPad for distraction, the anesthesiologist covered her mouth and nose with a mask and she calmly drifted to sleep. She's been put under anesthesia so many times and while it's still hard to leave her like that for a surgery, I'm pretty comfortable with the routine in radiology. I kiss her head, have nurses help me slide off the table and ease her down, and I head of to the cafeteria and gift shop for an hour while she's having her pictures taken.<br />
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After imaging, Tillery either takes her time waking up and drifts in and out for a bit while I sit in a rocking chair beside her waiting for her to finally be ready to wake. OR, she wakes up abruptly and fighting mad! This time, it was the latter and when I walked into the room, she was sitting up with the aide of 2 nurses and she was shouting sounds that didn't make any sense. They were removing the IV and she seemed to want to get out of the bed. Once they were done, I picked up my floppy ragdoll 4 year old and sat with her in my lap trying to calm her while she moaned. They never let us leave until they see her take a sip of juice and a bite of cracker but Tillery and I have a different tradition. I buy a bag of Cheetos in the cafeteria and smuggle them in to her for when she wakes up. She finally stopped making sounds when she saw the Cheetos and she ate a little snack while they ordered someone from transport to bring a wheelchair for us. We were wheeled up to the 8th floor to the neurosurgery department to have her shunt checked (magnets can alter the settings of a shunt and an MRI is like a giant magnet bed).<br />
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One of our regular nurse practitioners brought us back to check shunt settings and while we were in there she said, "Well, the tumor looks good." (This is always a statement that needs a little clarification.) Good like stable? YES! While I was thrilled to hear this, I decided to not fully believe it until I had the radiology report in my hands, which would happen the next morning.<br />
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Michelle also pulled up the 3d head CT. Now, we have seen Tillery's skull and brain from every possible angle. We have seen side by side images of pre and post surgery and compared past imaging to current imaging. We have seen CTs, MRIs, and x-rays, but we have never seen a 3D image. This scan blew my mind! We can look from any angle at exactly what her skull looks like. (I'm sharing imaging at the bottom of this post so if you aren't into looking a medical imaging, you can ignore but it really is cool to see what medical advancements have given us and how this image is helping us to make an educated decision about Tillery's care.)<br />
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Thursday was our long day of appointments with the full team. In addition to talking tumor and bone flap, we had a lot of other things to talk about. Being a cancer survivor comes with a long list of concerns, questions, and odd happenings. So here's a list of the things discussed and where we stand on things:<br />
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- The Tumor is Stable! While shrinking or gone seem like better options, in the cancer world, stable is still reason to celebrate.<br />
- Tillery's g-tube site is doing something weird. Her tube was removed 1.5 years ago and last week, it started shooting out a clear liquid. After discussions and consulting with other departments, we are having a follow up appointment scheduled with general surgery to determine if there is any further action (like stitches, etc) that needs to happen.<br />
- Tillery has a neuro-psychological evaluation scheduled in 2 weeks. This is standard for kids with brain tumors and timing is good as we talk about school options for next year. This testing will give us insight into learning delays/struggles and any other cognitive/developmental issues that we might run into in the future.<br />
- In addition to the neuro-psych testing, we discussed Tillery's emotions. We are fully aware that 4 year old little girls are known for being overly dramatic but when your child also has a brain tumor in the cortex of the brain that controls emotion and has experienced trauma to the brain, everyone is a little more cautious about calling emotional outbursts "normal". It's difficult for Joe and I to parent because we don't know what Tillery is able to control vs. what is out of her control. Sometimes it seems like she can't "pull herself together" and we aren't sure if she is fully able to. So, when we are back in town in 2 weeks, we will also see a child psychologist to discuss what's going on and get a game plan to help her with coping and us with parenting/disciplining.<br />
- Tillery loves school and is in a great program but we don't feel like she's where she needs to be with her learning. We don't know if the reason she doesn't write letters, name shapes, or count to 10 is simply because she chooses not to or because she doesn't understand. The above testing and evaluations will help with that but we are also going to talk with the school liaison from the oncology department and have her help advise us on possibly looking into special services for Tillery in school. She will also be able to communicate directly with the school to help coordinate any testing or services that might be needed.<br />
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The last appointment of the day was with neurosurgery. After looking at the CT from the day before, I felt sure Dr. V was going to tell us surgery was necessary. Instead, he came to us with 2 options: Do a surgery or Don't do a surgery. (Love when options are made to sound so easy.)<br />
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Tillery's left bone flap is basically an island. The bone is not connected anywhere to the rest of the skull. If it were touching bone to bone, it could fuse and the bone piece could continue to grow with the rest of the skull. As it stands now, the rest of her skull will continue to grow and that piece will stay the same size. It could also become softer over time. That piece is much more likely to fracture or even shatter if she experienced a head trauma (think falling down stairs, playground fall, car wreck). Without the surgery, she could be completely fine and she may never experience trauma and may never have problems. BUT, over time, that piece could chip or fracture and it could become necessary for surgery. If it's revised now, the bone can be moved forward to allow for it to fuse and grow and keep her own bone but if we wait, her bone may be too small or too soft and it may be necessary to use a synthetic piece instead. If we don't do the surgery and she experienced head trauma, her chances of serious consequences are increased. BUT, if we do the surgery now, she could later experience tumor growth that would then give us a reason to go back in on that side. Future surgery could cause this same problem or could give us an excuse to fix this without an additional surgery. In the end, there is no right or wrong but we are leaning toward going ahead and fixing it.<br />
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Having a medically fragile child is hard. Tillery appears so healthy and seeing her with peers, you may not know her history. But knowing her history makes it hard to see her with peers. We know that if she falls on the playground, what could mean a broken bone for another kid could be fatal for ours. If she takes a tumble down stairs, we hold our breath and hope she hits on her face because that's the safest place on her head to hit. If other kids are running and jumping, we get nervous about her keeping her balance amid it. I don't know that our fears will ever fully leave us but every little thing we can do to lessen them, we try to do.<br />
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Overall, this was a good quarterly appointment. We will be back in 2 weeks for some other follow ups and for the neuro-psych appointments. Then we will return in 3 months to do all these appointments again. At our next quarterly appointment, if the tumor is stable, we can then space appointments out to every 4 months.<br />
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Below are a few pics from our trip and the promised CT images.<br />
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We are also gearing up for the 2nd annual Tillery's Hustle for Hope 5k in May and getting churches signed up for Go Gray Sunday. Links for both are below as well.<br />
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<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Thanks for your prayers and support!</span><br />
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><br /></span>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Tillery's Hustle for Hope 5k Registration: https://runsignup.com/Race/TN/Knoxville/TillerysHustleforHope5k?remMeAttempt=</span><br />
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Go Gray Sunday: https://www.alexslemonade.org/mypage/1403307</span><br />
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CHEETOS!</div>
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Settling in for a long day of appointments: Snack, remote, camera, thermometer</div>
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Checking to make sure the map is correct. </div>
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The left side of this image (right side of her skull) is the synthetic bone flap that was placed about a year and a half ago. The right side of this image (left side of her skull) is the sunken bone flap we are currently concerned with. </div>
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This is the left side bone flap. You can see that the bone seems to be "floating" not connected to skull bone. </div>
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<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2221573701114390047.post-53251703790517811462017-09-30T03:00:00.000-07:002017-09-30T03:00:18.876-07:009/30 - Tillery<br />
<span style="background-color: white;"><br /></span><br />
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<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Three years ago
today, Tillery was diagnosed with a large cancerous brain tumor at only 15
months old. She has had 15 surgeries and 64 doses of chemotherapy and she’s
only 4 years old. Last month, Tillery said goodbye to the oncology life when
she had her port removed following 6 months of tumor stability. Her tumor
caused some severe physical delays that she fought hard to overcome (and
continues to fight through weekly physical therapy and gymnastics). Tillery
still has about half of the mass in her brain, which can never be fully removed
due to its risky location. Instead, Tillery goes every 3 months for an MRI to
make sure the tumor isn’t actively growing and as long as it remains stable,
she continues to live life as a normal kid. Tillery’s oncology and neurosurgery
team do expect growth again over the next few years, in which case, Tillery
will begin back on weekly chemotherapy. Her tumor will continue to go in waves
of growth and stability throughout her life, resulting in her never being able
to go into remission. Currently, we say we are “on the other side” of her
cancer diagnosis and it’s true what they say, the grass really is greener here.
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<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
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<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">These pictures are how our journey began. </span></span></div>
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<a href="https://1.bp.blogspot.com/-nSLtbGr3eGU/Wc779cYmldI/AAAAAAAABNo/_-KS29-EduYeR1_hCnZBz6p91sBhgYk9ACLcBGAs/s1600/IMG_1779.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-nSLtbGr3eGU/Wc779cYmldI/AAAAAAAABNo/_-KS29-EduYeR1_hCnZBz6p91sBhgYk9ACLcBGAs/s320/IMG_1779.JPG" width="240" /></a></div>
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<a href="https://4.bp.blogspot.com/-cOZthDc4l5Q/Wc77-gwUsdI/AAAAAAAABNs/-Zmx25cRtR8YRYqp3xBAsQr6OcE3y1HyQCLcBGAs/s1600/IMG_1796.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://4.bp.blogspot.com/-cOZthDc4l5Q/Wc77-gwUsdI/AAAAAAAABNs/-Zmx25cRtR8YRYqp3xBAsQr6OcE3y1HyQCLcBGAs/s320/IMG_1796.JPG" width="240" /></a></div>
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<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">#tilleryisloved #TILfoundation #alexsmillionmile
#GoGold2017</span></span></div>
<span style="background-color: white;"><br /></span><br />
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; letter-spacing: 0.2pt; margin: 0px;"><span style="background-color: white; color: #333333;">To support
childhood cancer research in honor of kids like Tillery, make a donation to our
team (TIL Foundation) with Alex’s Lemonade Stand Foundation.
https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span><span style="background-color: white;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-64112902607048450102017-09-29T03:00:00.000-07:002017-09-29T03:00:10.601-07:009/29 - Destiny<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">On this date 3 years ago, we were a normal family,
no sickness, no sadness. Six hours away, another family, who we had never met,
was having their last normal day, as well. Tomorrow, is the 3 year anniversary
of diagnosis day for these 2 sweet girls. Our daughter Tillery, is now
celebrating survival. Our friend Destiny was also diagnosed with a brain tumor
on September 30, 2014. Destiny passed away 16 months ago. </span></span><br />
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Destiny loved princesses and spent much of her
life dressed as one. She loved coloring, making cards for other cancer kids,
playing with her brother and friends, going to school, and cuddling with her
momma.</span></span></div>
<br />
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Statistically, 9 kids are diagnosed every day with
a brain tumor so it was crazy to meet someone diagnosed on the same day at the
same hospital living at the same Ronald McDonald House. We also know that
statistically 1/3 of those kids won't survive, so it was devastating to have
Destiny be one of those. </span></span></div>
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">So again, I ask, what would you do if you knew
that your entire life was going to change tomorrow? I encourage you to do it!</span></span></div>
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">#Destiny #tilleryisloved #TILfoundation
#alexsmillionmile #GoGold2017</span></span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; letter-spacing: 0.2pt; margin: 0px;"><span style="background-color: white; color: #333333;">To support
childhood cancer research in honor of kids like Destiny, make a donation to our
team (TIL Foundation) with Alex’s Lemonade Stand Foundation.
https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span><span style="background-color: white;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-50243319729927631642017-09-28T03:00:00.000-07:002017-09-28T03:00:08.885-07:009/28 – Dominic
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">The first time I ever met Dominic, it was in the
kitchen at the Ronald McDonald House at breakfast time. There weren’t many
people in the kitchen and when I walked in with Tillery in the stroller with a
helmet on her head, I heard a boy’s voice say “She’s gorgeous!”. I always
remember this because it touched my heart that he saw past Tillery’s helmet and
tubies and just saw her for the cute kid she is. As the next few months went
by, I got to know Dominic and his family better. They became a popular crew at
the RMH and the hospital as his mother was like the house mom, his dad was
everybody’s buddy, his sister was a sweet young lady we all talked with, and
Dominic’s personality earned him the nickname “The Mayor”. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Dominic was diagnosed with HLH, a rare form of
cancer that has a research facility based at Cincinnati Children’s. His family
came from Florida to Ohio in the winter in an attempt to save their son’s life
through a bone marrow transplant. In addition to all the scary long-term
possibilities with HLH, a BMT had its own long list of potential side effects.
The scariest possibility was graft vs host disease (GVHD), which became a
battle for Dominic soon after his transplant. He spent many months in and out
of the hospital. Much of his time was spent in isolation and he occupied
himself by building elaborate things out of Legos and watching his favorite
wrestlers on TV. His family was always optimistic and focused on a full
healing, however Dominic’s healing came in a different form than they had
hoped. On October 15, 2015, Dominic moved from his earthly life to his heavenly
one. </span></span></div>
<br />
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">I’ll always remember an encounter I had with
Dominic’s dad the night before he passed away. I had gone to the hospital
chapel to pray for Dominic and his family. I knew the end was near and my heart
was broken for my friends. After praying for comfort and peace for Dominic’s
family in the chapel, I walked out into the near empty hospital corridor and
almost ran right into Dominic’s dad. I didn’t know what to say or how to even
begin but I felt a strong pull to go to him and pray. So I gave him a hug and
asked if I could pray with him. I don’t know where the words came from and I
will never remember what they were but my soul was touched as we bowed in
prayer together in that dark, empty hallway. Dominic died the next day and
while I was very sad, I was also very much at peace because the previous night,
I knew that God had prepared a place for him. </span></span></div>
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<a href="https://1.bp.blogspot.com/-_nB-z80oWmU/WcweBwRdYkI/AAAAAAAABMk/Qopgj3KlKZs_pV-I71dXxXgkhLj2eL2iwCLcBGAs/s1600/22093571_10214466781210171_311971170_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-_nB-z80oWmU/WcweBwRdYkI/AAAAAAAABMk/Qopgj3KlKZs_pV-I71dXxXgkhLj2eL2iwCLcBGAs/s320/22093571_10214466781210171_311971170_n.jpg" width="240" /></a></div>
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">#LamboyStrong #tilleryisloved #TILfoundation
#alexsmillionmile #GoGold2017</span></span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; letter-spacing: 0.2pt; margin: 0px;"><span style="background-color: white; color: #333333;">To support childhood
cancer research in honor of kids like Dominic, make a donation to our team (TIL
Foundation) with Alex’s Lemonade Stand Foundation.
https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span><span style="background-color: white;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-85050242768905872812017-09-27T03:00:00.000-07:002017-09-27T03:00:01.425-07:009/27 - Bennett
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">I’ll always remember the first brain tumor kid we
met. We were at the Ronald McDonald House and a family was unloading groceries
in the kitchen like they lived there (it was early in our stay there and we
couldn’t yet image being that comfortable there). They looked at Tillery’s head
and asked, “Brain tumor?” It was so strange for us until we saw an adorable
bald girl with a scar on the back of her head come around the corner.
Immediately, we had a connection to them. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Over the next few months, we shared a house with
Bennett and her family. Well, most of that time, Bennett was in-patient across
the street so we really shared a house with her baby sister, Juliet and her
grandmother, Diana and occasionally saw her parents run through on their way to
or from the hospital. Bennett’s tumor was an ETANTR and while the resection
surgery removed 99% of her tumor, the chances of surviving with any remaining
piece of tumor was 0%. </span></span></div>
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Bennett’s family stayed very positive and tried
hard to give Bennett as much normalcy as possible. I remember once coming out
of my room and encountering Bennett having a temper tantrum alone in the
hallway. I looked around wondering how she ended up there and then rounded the
corner and saw her mom. I realized that amid all the treatments and hospital
stays, she was still a kid who needed to pitch a fit and her mama was letting
her do it. That moment always stays with me because it’s those times of
realness that remind you they are more than just a patient. </span></span><br />
<br />
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Bennett endured some of the yuckiest chemo
treatments I’ve ever heard about. Talking to her family and reading their
updates was hard, especially as our daughter was improving. We saw less and
less of them as they spent most all of their time at the hospital.</span></span><br />
<br />
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">I’ll always remember the day that Bennett’s family
moved out of the Ronald McDonald House. I was so heartbroken and I remember
thinking I might never see her again. What I had recently heard and seen of her
seemed that her time left would be very short. But that wasn’t the case! Bennett
lived another 10 months and she really LIVED during that time! It wasn’t a time
of hospital beds and tubes and treatments. It was a time of laughing and
playing and being a family. I know that time was so hard on her family but I
would smile every time I saw a new post or picture and heard a good report.
About a month before she passed away, I got the opportunity to see Bennett one
last time and swing beside her on the playground. She was smiling and playing
just like any other kid, nothing like the sickly child I had seen many months
before. I was filled with joy to see her and that’s the Bennett I want to
always remember. The girl who was living!</span></span></div>
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<a href="https://4.bp.blogspot.com/-5Ntp09OPgi8/WcsH2p_lNHI/AAAAAAAABL0/k-hSAfLFUIULT70z47f-HmiuLsXdJjMLgCLcBGAs/s1600/12189079_10103085565898130_382500890779728635_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="320" src="https://4.bp.blogspot.com/-5Ntp09OPgi8/WcsH2p_lNHI/AAAAAAAABL0/k-hSAfLFUIULT70z47f-HmiuLsXdJjMLgCLcBGAs/s320/12189079_10103085565898130_382500890779728635_n.jpg" width="320" /></a></div>
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">#BlessingsForBennett #tilleryisloved
#TILfoundation #alexsmillionmile #GoGold2017</span></span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; letter-spacing: 0.2pt; margin: 0px;"><span style="background-color: white; color: #333333;">To support
childhood cancer research in honor of kids like Bennett, make a donation to our
team (TIL Foundation) with Alex’s Lemonade Stand Foundation.
https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span><span style="background-color: white;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-25524644963328248942017-09-26T03:00:00.000-07:002017-09-26T03:00:20.903-07:009/26 – Timothy
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Timothy was nine months old when the word cancer entered
our lives. He had a routine MRI of his spine to rule out a tethered spinal cord
as a cause for his motor delays. His spinal cord was fine, but a radiologist
spotted a shadow on his liver. We were called immediately back to the hospital
for an ultrasound and a second MRI was scheduled. We met his oncologist and the
man who would become his primary surgeon at 7PM on a Friday night. We were told
not to hope that the biopsy would be benign but to hope that it would be the more
treatable of the pediatric liver cancers. Our baby played peek a boo with a
fellow while we talked about surgery, chemo, and life expectancy. After the
biopsy, that same fellow kept our sweet boy happy while we were told that the
existing protocol for Stage III hepatoblastoma left his chances of survival
grim at best. We enrolled him in a trial of what has now become the primary
protocol for the disease. All four drugs were designed for adults. The list of
possible immediate and long-term effects seemed endless.</span></span></div>
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">The next six months were a constant barrage of
treatments, side effects, complications, and desperate hope to see the next
day. The trial study included drugs with possible late effects ranging from
hearing loss to low bone density to an increase in risk for leukemias. Every
day, we watched as these drugs were infused into his body by way of a central
line. He underwent numerous surgeries, exploratory scopes, and radiology
procedures. Before he was two years old, he had been under anesthesia more than
forty times. </span></span></div>
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Now, Timothy is almost eight years old. He finished chemo
six years ago. We have what we refer to as souvenirs from treatment. His bone
density is low. At age four he fell on our carpeted floor and suffered a spiral
femur fracture that led to an ambulance transport from our local hospital to
his primary hospital. He spent six weeks in a cast from his toes to his chest.
He has permanent hearing loss and wears hearing aids. He has a feeding tube
that will be a part of him throughout his life. All of these are at least in
part from the chemotherapy agents that saved his life as a baby. </span></span></div>
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">He also carries with him a resiliency that defies
explanation. Timothy is joyful. He is comfortable in places that most adults
would find intimidating. I think that is the legacy living through cancer and
continuing to live with the late effects has given Timothy. He knows that life
is meant to be lived, and he lives it with joy and presence in each moment.</span></span></div>
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Timothy’s family became a part of our family while
sharing the Ronald McDonald house together. Timothy’s experience as a baby,
helped him to be compassionate to all around him. When he met Tillery, it was
during the helmet months and he immediately dubbed her “Baby Hat”. Timothy and
Tillery became good buddies at the RMH and they always pick right up where they
left off when we see each other now. As Tillery’s parents, we love Timothy’s
survivor story as it has always given us a ray of hope on stormy days. </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-p-Rke2cZ7zQ/WchcaNuTqPI/AAAAAAAABLM/sMnDAS5ExGMBZS--8yxV__KJeVWw4ja4gCLcBGAs/s1600/21083699_10104829752579040_9030230657007165740_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://3.bp.blogspot.com/-p-Rke2cZ7zQ/WchcaNuTqPI/AAAAAAAABLM/sMnDAS5ExGMBZS--8yxV__KJeVWw4ja4gCLcBGAs/s320/21083699_10104829752579040_9030230657007165740_o.jpg" width="320" /></a></div>
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">#Timothy #BabyHat #tilleryisloved #TILfoundation
#alexsmillionmile #GoGold2017</span></span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; letter-spacing: 0.2pt; margin: 0px;"><span style="background-color: white; color: #333333;">To support
childhood cancer research in honor of kids like Timothy, make a donation to our
team (TIL Foundation) with Alex’s Lemonade Stand Foundation.
https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span><span style="background-color: white;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-78293782299021539732017-09-24T03:00:00.001-07:002017-09-24T18:11:24.235-07:009/25 – Easton
<br />
<div style="margin: 0px 0px 11px;">
<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Easton gave us
the gift of home in Cincinnati. We had been away for about 3 months and those 3
months had been really scary. They had also been very lonely. Then, while petting
therapy dogs in the lobby of the Ronald McDonald House, we heard a twangy voice
that sounded just like home. That voice belonged to Easton’s big sister, Emma,
and I immediately had her direct me to her mama and we became instant friends.
Easton was our first little Cincinnati friend who also called Tennessee home
and having other Southerners in the house did our hearts good. Read the words
below from Easton’s mama about her baby boy. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Our son Easton Jedediah Goad was born on December
27, 2013. His big sister Emma was thrilled beyond words and wanted to hold him
every second. Our new family of 4 was complete and we couldn't be happier. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">My daddy came and spent the whole day at the
hospital on the day I was induced. He was one proud grandpa. However, I did not
know that would be the last time I would see him. My daddy went home and passed
away in the night. The next few days were a blur. I literally came home from
the hospital to the funeral home. I really didn't know how to feel because who
in the world gives birth and then loses their daddy the very next day? </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">After daddy's funeral, our life returned to a new
"normal". Easton had failed his newborn hearing screening, so over
the next few months we saw a doctor almost every week. I was so upset that
Easton could not hear, but knew he could overcome this challenge as he got
older. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Fast forward 4 months to April 2014. Easton was
fussy and began running a low grade fever of 99-100. I felt he was either
teething or possibly getting an ear infection. On Monday, April 28th I took him
to see our pediatrician. They confirmed that they felt like he had a virus and
that with a little time he would be as good as new. I was to alternate Tylenol
and Motrin and it would be no big deal. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">On Wednesday, April 30th our pediatrician's office
called to check in on him. He was still feverish and wasn't eating well and was
very lethargic. They wanted to see him again if he still had a fever the next
morning. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">On May 1st, I loaded my babies up, dropped Emma,
our daughter, off at the babysitter and headed to the doctor with Easton. The
doctor we saw was very thorough. He said that "clinically" Easton looked
perfect, but he would do some blood work just to make sure we weren't missing
an infection of some kind. So, he pricked his little toe and I waited. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">He returned to our exam room with results in hand.
He sat down on his stool and put his hand on top of mine. I knew then that
there was something wrong. Easton's red blood cell count and platelets were
low. He said that this could be indicative of a type of blood cancer. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">I called my momma and she came to be with me. We
took Easton to the local hospital and had the blood work repeated. The results
were the same. We were sent immediately to Vanderbilt Children's Hospital. The
next hours were such a blur. I could not comprehend what was going on around
me. How could this perfect and innocent little being have something as
terrifying as cancer? We spent the next 11 hours in the ER before they admitted
us and we were sent to a room. We spent the next 13 days in the hospital with
no real answers. They did a bone marrow biopsy, spinal tap and lots of blood
work and transfusions of platelets and blood. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">We were discharged with no answers. The months of
May, June, July and August were spent making 3 trips per week to the
Hematology/Oncology clinic for blood work, and transfusions if necessary. By
mid August, Easton's tests had stabilized and it looked as if whatever had been
wrong was better! We were so excited and so was our Oncologist! </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">On August 26th, that all changed. Easton began
passing white stool and we were advised to get to Vanderbilt immediately. We
returned once again to the ER. This time for an ultrasound, blood work and
other tests that I honestly can't even remember. Late in the night, they came
to us and told us that there was something in Easton's liver that appeared
abnormal. It would require a biopsy. So, he was scheduled for a liver biopsy
and we got the results the next day. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">On August 27th at the age of 8 months old, our son
was diagnosed with a granularcytic sarcoma in his liver, which was pretty much
a ball of Leukemia in his liver. We now had to decide on a treatment plan.
Chemo, bone marrow biopsies, spinal taps, liver biopsies, bilirubin,
hemoglobin, neutrophils would all become a part of our everyday lives. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Easton had 6 rounds of chemotherapy. With each
round, the cancer cells would decrease, but as we waited for his counts to
recover the cancer cells would grow again. In November, we were given the news
that chemo was not going to make the cancer go away and that Easton needed a
bone marrow transplant that would have to happen in Cincinnati. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">We loaded up our belongings and moved our lives to
Cinci. We were fortunate enough to receive a room at the Ronald McDonald House.
There, I met friends who became our family. Easton received his transplant on
Dec 29th. The prep chemo was very strong. They told us that he would feel as
though he had the flu. We had typical setbacks of high blood pressure, low oxygen,
weight loss that resulted in getting a feeding tube, but overall Easton did
very well with his transplant! On Feb 12, we were released to actually go live
as a family of 4 for the first time in a year at the Ronald McDonald House. His
care was going to be around the clock, which was stressful, but we were
THANKFUL! For 14 blissful days, our family got to be "normal"! We got
to be a momma, daddy, big sister and little brother...like a normal family! </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">The week of Feb 23rd, however, things started to change.
Easton was very uncomfortable. He was very irritable and at times inconsolable.
By Wednesday, we had slept hardly any and decided to go back to the hospital.
They told us that he would at some point have to be hospitalized, but that it
was completely normal. Most of the time, it was just a simple infection that
could be treated and cleared up in no time. So, we were concerned, but not
afraid. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Once back at the hospital, they did X-rays,
ultrasound, and scheduled him for a bone marrow biopsy, which was standard
procedure because we needed to check the stays of his donor cells and see what
progress we had made. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">On Sunday morning around 7:30, it was confirmed
that Easton's Leukemia had returned and this time it was in his bone marrow,
there were spots in his lungs and his liver was still involved. What was
supposed to be a routine hospitalization resulted in the news that our
son...our 14 month old baby would not recover. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">They immediately began making plans to get us back
to Nashville, TN so that we could be surrounded by family and medical staff
that was like family. However, Easton's illness was progressing much too fast
and that was just not possible. Our plans had changed and it was now our job to
keep him comfortable. We had to try to get Emma to Cinci to explain what was
happening and let her say her goodbyes. The day was like a whirlwind. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Emma arrived on Sunday evening around 6:30 pm. We
did what has to be the hardest thing we will ever do in our natural lives. We
told our 5 year old daughter that she was losing her brother. She was
devastated and I'm sure didn't quite understand all of it. Easton Jedediah Goad
gained his wings at 7:10 p.m on March 1, 2015. </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Children are NOT supposed to die. Parents are NOT
supposed to bury their children and 5 year olds are NOT supposed to lose their
siblings...their lifelong best friends...childhood cancer is real and it is
brutal. We never thought it would touch us or our family, but it did. Our kids
deserve a cure!</span></span></div>
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<a href="https://3.bp.blogspot.com/-TuAKcQlQ28Y/WchXi95pBlI/AAAAAAAABKY/QF5l0SJLUYUHcjir9zWq6xtfAMm5Ke8YQCEwYBhgL/s1600/21762195_10156669318520558_1811007031375966475_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="640" height="320" src="https://3.bp.blogspot.com/-TuAKcQlQ28Y/WchXi95pBlI/AAAAAAAABKY/QF5l0SJLUYUHcjir9zWq6xtfAMm5Ke8YQCEwYBhgL/s320/21762195_10156669318520558_1811007031375966475_n.jpg" width="213" /></a></div>
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">Easton’s family continues to support families like
their own in memory of their son. The Easton Goad Foundation was established
after his passing and they raise money to donate to The Ronald McDonald House
and Vanderbilt Children’s Hospital. The Easton Goad 5k will be held October 21
in Middle Tennessee and you can learn more about it or how to support their
foundation on their page: https://www.facebook.com/eastongoadfoundation/</span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">#EastonGoadFoundation #tilleryisloved
#TILfoundation #alexsmillionmile #GoGold2017</span></span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; letter-spacing: 0.2pt; margin: 0px;"><span style="background-color: white; color: #333333;">To support
childhood cancer research in honor of kids like Easton, make a donation to our
team (TIL Foundation) with Alex’s Lemonade Stand Foundation.
https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span><span style="background-color: white;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-23234069660382926512017-09-24T03:00:00.000-07:002017-09-24T03:00:26.273-07:009/24 - Tony
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Tony
is another kiddo we never got to meet but who has inspired us greatly. We know
all about Tony’s story from his parents who continue to fight for kids like
ours and theirs. I met the Merks when they were volunteering to serve brunch at
the Ronald McDonald House and I noticed the grey ribbon on their shirts. We
talked about their son and our daughter and formed a bond. Since then, we have
stayed in touch and have had the opportunity to participate in the 5k held in
memory of their son and have also given blood in the blood drive in his memory.
They are amazing parents who continue on after great loss and we are bless to
call them friends. </span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Tony
is the youngest of Rick & Lynne Merk's four sons. He was diagnosed
with medulloblastoma, an aggressive pediatric brain cancer, on October 27, 2008
– one month shy of his fourth birthday. He underwent brain surgery, 31
cranio-spinal radiation treatments, and high-dose chemotherapy. Tony
handled all of this like a superhero. He made being stuck in the hospital
fun – always finding games to play and things to do. He loved to scare
the nurses with his toy snakes, bugs, and spiders. Tony enjoyed singing
and dancing, setting up a carwash to wash his Hot Wheels cars, picnics on the
hospital floor, and much more. We even wrote a song called “My own
superhero” about how strong Tony was – and “with God on my side, I don’t have
to hide. I am my own superhero.” </span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Tony
had a year of clear scans during which he attended pre-school and played with
his brothers - treasuring EVERY moment of life and spreading joy to many.
When Tony relapsed in June 2010, his parents had to rely upon clinical
trials and unproven treatments as there was no known cure for relapsed
medulloblastoma. Tony passed from this earth on July 4, 2011 at age 6.
Pray~Hope~Believe was the theme for his journey and is now his family's
theme for healing.</span></span></div>
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<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
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<a href="https://4.bp.blogspot.com/-wj4jnsYD9i0/Wb1y44Q5CqI/AAAAAAAABHc/RFAqtvZgXU0Kegpe0lD9VorKDrObBm2GQCLcBGAs/s1600/never%2Bforgotten2_aug11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="720" height="320" src="https://4.bp.blogspot.com/-wj4jnsYD9i0/Wb1y44Q5CqI/AAAAAAAABHc/RFAqtvZgXU0Kegpe0lD9VorKDrObBm2GQCLcBGAs/s320/never%2Bforgotten2_aug11.jpg" width="320" /></a></div>
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<a href="https://1.bp.blogspot.com/-Hj1V4NqrQIs/Wb1y74eEoeI/AAAAAAAABHs/7ToY6H2f93kjnups0pPmsWXmZlwWp2-VQCLcBGAs/s1600/tonymerkday_2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="284" data-original-width="324" height="280" src="https://1.bp.blogspot.com/-Hj1V4NqrQIs/Wb1y74eEoeI/AAAAAAAABHs/7ToY6H2f93kjnups0pPmsWXmZlwWp2-VQCLcBGAs/s320/tonymerkday_2.png" width="320" /></a></div>
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<a href="https://1.bp.blogspot.com/-txWw0oPXoZs/Wb1y6lyc9KI/AAAAAAAABHo/DJL1CbItyl8p1tfo04jhfcZf3uM_Ao7jQCLcBGAs/s1600/two%2Bthumbs%2Bup_may11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="450" data-original-width="600" height="240" src="https://1.bp.blogspot.com/-txWw0oPXoZs/Wb1y6lyc9KI/AAAAAAAABHo/DJL1CbItyl8p1tfo04jhfcZf3uM_Ao7jQCLcBGAs/s320/two%2Bthumbs%2Bup_may11.jpg" width="320" /></a></div>
<div style="line-height: normal; margin: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="background-color: white;"><span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">#TonyBoy #PrayHopeBelieve </span><span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">#tilleryisloved
#TILfoundation #alexsmillionmile #GoGold2017</span></span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; letter-spacing: 0.2pt; margin: 0px;"><span style="background-color: white; color: #333333;">To support
childhood cancer research in honor of kids like Tony, make a donation to our
team (TIL Foundation) with Alex’s Lemonade Stand Foundation. https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span><span style="background-color: white;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-40371368736820240282017-09-23T03:00:00.000-07:002017-09-23T03:00:00.958-07:009/23 – Iyana
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">“Iyana was diagnosed with ATRT (atypical teratoid
rhabdoid tumors) when she was 6 months old. She endured 3 rounds of high dose
chemo, 48 doses of focal radiation and countless amounts of experimental
medicines once we were out of options. Iyana loved to meet new people and she
had a wave and a smile that would always be embedded in your heart if you ever
came into contact with her. Iyana passed away on October 18, 2016 at 2 years
old. Iyana fought hard and smiled through it all. We miss her every day and
love her just as much.” </span></span></div>
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">We met Iyana’s family at the beach. We watched Iyana smile
and wave at everyone in the tent and on the beach. We watched Iyana’s parents
and siblings soaking up every minute of a family beach trip. That week, 10
families with children with cancer came to the beach for a retreat but only one
left to go home on Hospice care. Only one family lost their child just a few
months after we all left that place of rest and hope. Iyana’s story hit us all
hard because we all knew that childhood cancer is often not about genetics or
life choices. It’s random and can hit anyone and in some of those, it hits
harder. Iyana’s story could have been any of our children’s stories. It could
be your child’s story. Childhood cancer doesn’t care if you have a signature
wave and infectious smile. It never fights fair. </span></span></div>
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">I’m sorry if you never got to see her wave. Because of
cancer, you’ll never have the chance. </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-bHa9KalGqhI/WbXpqcoAAQI/AAAAAAAABEc/ZhoRNw-y73wF8VR5goLC8WDeP7eYGKirACLcBGAs/s1600/iyana1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="640" height="320" src="https://2.bp.blogspot.com/-bHa9KalGqhI/WbXpqcoAAQI/AAAAAAAABEc/ZhoRNw-y73wF8VR5goLC8WDeP7eYGKirACLcBGAs/s320/iyana1.jpg" width="213" /></a></div>
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<a href="https://4.bp.blogspot.com/-xowIv5xQOiU/WbXpqyYKBhI/AAAAAAAABEk/L-vFeESpIt4_XLWuqWf4Gpfs1iIMVrn9wCLcBGAs/s1600/iyana4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://4.bp.blogspot.com/-xowIv5xQOiU/WbXpqyYKBhI/AAAAAAAABEk/L-vFeESpIt4_XLWuqWf4Gpfs1iIMVrn9wCLcBGAs/s320/iyana4.jpg" width="240" /></a></div>
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<a href="https://2.bp.blogspot.com/-okZ3R7KigAo/WbXprNgWGWI/AAAAAAAABEo/FSk88tU86vUMM4wSVPBYZJkxoVfRMYDZACLcBGAs/s1600/iyana5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="640" height="320" src="https://2.bp.blogspot.com/-okZ3R7KigAo/WbXprNgWGWI/AAAAAAAABEo/FSk88tU86vUMM4wSVPBYZJkxoVfRMYDZACLcBGAs/s320/iyana5.jpg" width="213" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-AUbUF9A2Sag/WbXpqCHe8fI/AAAAAAAABEY/h6wzikwSymou3xLN7hEa-pGetJDchUWoACLcBGAs/s1600/iyana.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://2.bp.blogspot.com/-AUbUF9A2Sag/WbXpqCHe8fI/AAAAAAAABEY/h6wzikwSymou3xLN7hEa-pGetJDchUWoACLcBGAs/s320/iyana.jpg" width="240" /></a></div>
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">#Iyana #tilleryisloved #TILfoundation
#alexsmillionmile #GoGold2017</span></span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; letter-spacing: 0.2pt; margin: 0px;"><span style="background-color: white; color: #333333;">To support
childhood cancer research in honor of kids like Iyana, make a donation to our
team (TIL Foundation) with Alex’s Lemonade Stand Foundation. https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span><span style="background-color: white;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-64740506599744239672017-09-22T03:00:00.000-07:002017-09-22T03:00:16.045-07:009/22 - Ben Boone
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Ben was diagnosed with brain cancer at 10 years old. When
he was told about his tumor, his first question was "when can I go back to
school?" That was September of 2016. I am thrilled to say that he just
started back in August of this year. It was a long hard road but we made it.
There are many more hurdles to overcome but we made it this far. We are
blessed.</span></span></div>
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">These words from Ben’s mom brought me to tears. So simple
but so powerful. A kid who just wanted to be a normal kid and go to school. We
often focus on the surgeries and the chemotherapy and all the hospital time.
But sometimes we forget that for the kids, they are focused on how all of that
takes them away from their friends and their normalcy. For them, the hard part
is being different. </span></span></div>
<br />
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Welcome back to school Ben! We hope it’s an awesome year!</span></span></div>
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<a href="https://1.bp.blogspot.com/-bqCgd2Dxrdc/WbXozHL71nI/AAAAAAAABEI/IuPSBr4gckwmlOVpijnWQllRt4OcpfPFwCLcBGAs/s1600/Ben2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1223" height="320" src="https://1.bp.blogspot.com/-bqCgd2Dxrdc/WbXozHL71nI/AAAAAAAABEI/IuPSBr4gckwmlOVpijnWQllRt4OcpfPFwCLcBGAs/s320/Ben2.jpg" width="244" /></a></div>
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">#fearlessben #tilleryisloved #TILfoundation
#alexsmillionmile #GoGold2017</span></span></div>
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; font-family: "Calibri",sans-serif; font-size: 11pt; letter-spacing: 0.2pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">To support childhood cancer research in honor of kids
like Ben, make a donation to our team (TIL Foundation) with Alex’s Lemonade
Stand Foundation. https://www.alexslemonade.org/mypage/1314958</span></span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-57681217697140024202017-09-21T03:00:00.000-07:002017-09-21T03:00:01.372-07:009/21 – Lillian
<br />
<div style="margin: 0px 0px 11px;">
<span style="color: #4b4f56; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">Lillian’s story is the most
heartbreaking story of a survivor I have ever heard. We were able to hear her
parents tell pieces of her story over breakfast at the beach and even in a
group of seasoned cancer parents, their story had us all in tears. Read the
words from Lillian’s mother about her amazing, miracle child. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">Our
Lillian, otherwise known as "Toots", has stage 4 neuroblastoma. She
is the youngest of our 4 children. We were so certain we were having a healthy
baby after many detailed ultrasounds. As soon as she was born, we knew
something wasn't right. She had blanched spots in her skin. The second day, her
liver had noticeably grown in 24 hours. The third day, scans started and a
diagnosis of internal hemangioma. Fast forward 10 days. Lillian had been on
blood pressure medicines and steroids to slow the heart being robbed of blood
as the hemangiomas continued to grow. By 10 days old, her stomach was extremely
distended and her liver protruding even on her back. At 12 days old the word
"cancer" entered into our family and on Mother's Day 2015, I held my
2 week old newborn baby girl as chemo attempted to destroy the cancer that had
taken over her body. The main tumor was on her right adrenal gland and had
spread to her liver, bones, and skin. However, the chemo did nothing. At 4
weeks old we were advised that she needed emergency radiation treatments to
attempt to stop the cancer in order to make it to the next eligible chemo
treatment just a week later. Radiation only fueled the fire and gave us many
nasty side effects that effect Lillian today. The chemo didn't work nor the
radiation. The treatments were stopped until doctors could grasp the situation
while my baby lied in ICU dying. She had daily blood transfusions, a feeding
tube, medicines, continuous pain pump, oxygen, and many many medicines to try
to keep her stabilized. We needed healing but God wanted to make a miracle.
Nothing had worked. Our prayer changed from healing to begging for a miracle to
heal our newborn and as a promise in return we would use her for His glory. Our
prayer was heard.</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">While in
treatment Lillian's tumor thankfully receded. We continued with the suggested
salvage chemo that the doctors described as the "big guns in a small
dose." Lillian is now 2 and full of life. We have 4 therapies a week to
keep her development on track as more than likely side effects from treatment. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">Recent
times have been challenging as she has been choking while drinking. She has 4
therapies per week to help with speech, swallowing, occupational therapy, and
developmental. She is absolutely amazing and watching her play like a typical 2
year old gives us son much hope as well as others. She is full of personality
and spunk. As Lillian's parents, we are passionate about research to find safer
chemos and treatments. Our 2 month old had to have adult chemos when they
started salvage chemos because there isn't enough research on pediatric cancer
treatments. While Lillian is done with chemo now, her doctors are not using the
terms “NED” or “remission” because she still has spots on her liver that they
are monitoring. </span></div>
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<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><br /></span></div>
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<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">#Lillian
#tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017</span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="letter-spacing: 0.2pt; margin: 0px;"><span style="color: #333333;">To support childhood cancer research in honor of kids
like Lillian, make a donation to our team (TIL Foundation) with Alex’s Lemonade
Stand Foundation. https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-134780798486769722017-09-20T05:13:00.001-07:002017-09-20T05:13:12.212-07:009/20 – Abby
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">Have you ever gotten one of those direct mail pieces
from St. Jude asking for donations? Did you know the kid on the letter?</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">About a week after we returned home from our
Lighthouse retreat, we got a piece of mail from St. Jude and when I opened it,
I took it to Joe and said, “Isn’t this Abby from the beach?” I messaged her mom
and, yes, it was “Abby from the beach”. </span></div>
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<div style="margin: 0px 0px 11px;">
<span style="font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">Read the below account of Abby’s diagnosis day. Most
cancer parents will give you a similar story of everything is normal and then
the next day, nothing is normal ever again. That’s what cancer is like. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">Diagnosed
with ALL T-cell 6/15/15 two months before her 7th birthday. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">Abby is
lucky they have found successful treatments for her specific type of cancer.
However, she has experienced terrible side effects and who knows what other
side effects will show up years from now. Still she is fortunate. Many, many of
our friends have cancers that have not had enough research to find a successful
treatment. As a nine year old, she has already seen more friends die than most
people see in their entire life. They all deserved a cure but we need more
research to find them. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">The
beginning of summer break 2015 was great! We were going bowling 2-3 times a
week, swimming, playing every day, and we were expecting a baby girl at the end
of July. My oldest daughter had just graduated high school and I was trying to
spend as much time with her as I could before she left for college.</span></div>
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<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">On June
13 parts of our city and parish were having record flooding but we were on our
way to go bowling. As we were turning the old Toyota Corolla into the bowling
alley we were rear ended by a big truck. The car was totaled but we were all
okay. The doctors didn't believe me when I said I was only having really strong
Braxton hicks contractions and we had to spend several hours in the labor and
delivery unit. Abby laid in the room with me and slept and I noticed she had a
little higher temp than normal. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">Two
days later, Monday, June 15, Abby was complaining of her knee hurting so I took
her to the doctor. I almost told her to take some Tylenol and stop complaining.
I am so glad I didn't. 4 hours later I was told she had very progressed
leukemia. Her blood was 93% cancer and I had no idea she was that sick. That
same day, or maybe it was very early the next morning she was airlifted to
Memphis for treatment.</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">It was
just a normal day and then BOOM everything changed forever.</span></div>
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<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><br /></span></div>
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<span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;">#Abby
#StJude #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017</span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="letter-spacing: 0.2pt; margin: 0px;"><span style="color: #333333;">To support childhood cancer research in honor of kids
like Abby, make a donation to our team (TIL Foundation) with Alex’s Lemonade
Stand Foundation. https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2221573701114390047.post-58111916023132840582017-09-19T03:00:00.000-07:002017-09-19T03:00:12.242-07:009/19 – Jalie
<br />
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<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Another little survivor we met on our Lighthouse retreat
is Jalie. Read below from her mother, Jules. </span></span></div>
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<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;">Jalie Carrasco is a beautiful 5-year-old who was
diagnosed with Pre B ALL PH+ leukemia when she was one. Jalie is a smart,
outgoing, positive little soul that loves to dance, sing and make everyone
laugh and loves her family and friends. Though she is in remission she will remain
in treatment till she is in her pre-teens. Through the side effects this
beautiful girl continues to show her strength and beauty through it all. She is
my hero and my best friend. Her love for God is amazing and she is my reason
for joy and love. Jalie is truly the overcomer.</span></span></div>
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<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;"><br /></span></span></div>
<div style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; line-height: normal; margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><span style="background-color: white;"></span></span><span lang="EN" style="color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; margin: 0px;"><br /></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; color: #1d2129; font-family: "Times New Roman",serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span style="background-color: white;">#Jalie #tilleryisloved #TILfoundation #alexsmillionmile
#GoGold2017</span></span></div>
<br />
<div style="line-height: normal;">
<span lang="EN" style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto; letter-spacing: 0.2pt; margin: 0px;"><span style="background-color: white; color: #333333;">To support
childhood cancer research in honor of kids like Jalie, make a donation to our
team (TIL Foundation) with Alex’s Lemonade Stand Foundation.
https://www.alexslemonade.org/mypage/1314958</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="color: #333333;"></span><span style="background-color: white;"></span>Unknownnoreply@blogger.com0