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Our Love, Our Life, Our Hero, Our Angel Our Laurel Rose

1st Grader Laurel Rose! Cancer Free/Cure Date: Feb. 28, 2010

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 Welcome to Laurel Rose's Webpage.
Laurel was born to Bob & Kathy Urban on 10/19/01. She was 3 weeks early and weighed in at 8lbs 9 oz! She joined Brothers Matt (then 16) and Tim (then 12).
Laurel was diagnosed with Wilm's Tumor (Nephroblastoma), Stage II with Favorable Histology on 10/22/04, just 3 days after her 3rd Birthday. On Oct. 25, 2004, she had surgery (Nephrectomy) to remove her left kidney and 18 cm tumor. The tumor remained intact, except for a capillary that did burst. She was put on Wilms Regimen EE4A (an 18 week protocol of Vincristine and Dactinomycin) with scans every 6 weeks post-op until March 22, 2005. Her last chemo treatment was Feb. 28th, 2005.
Post treatment will be clinic visits every 6 weeks to have her port flushed (until its removal) and every 12th week with scans until ??. Clinic visits will include Labs and PE (Physical Exam). After September 2006, she will have scans every 6 mos. until March 2009, then check-ups annually until she is 30 yrs old. (this will of course be up to her!) Port removed June 20, 2005.
PRAISE THE LORD! CLEAR SCANS or NED (No Evidence of Disease) on: March 16, 2009!!
*****GRADUATED to Long Term Survivor Clinic on March 16, 2009***** Next visit: ??March 2010??
Diagnosed May 14, 2007 with Selective Mutism, a Social Anxiety Disorder.
I believe Laurel has been a Selective Mute since at least the age of 2 yrs. She has hidden behind my skirts since then (when she was a happy, outgoing infant) and refused to look at people's faces when they tried to talk to her. My heart breaks everytime I think about her in the hospital when first dx with Wilms and all those Interns, students, Fellows and nurses coming in and poking & prodding her, asking her questions. After the 1st day, she gave up fighting to get away from them, and everytime someone came in (which was about every 20 mins.) she would just turn her head away, trying to ignore anything & everything going on.
Selective Mutism is a complex childhood anxiety disorder characterized by a child’s inability to speak in select social settings, such as school. These children understand language and are able to talk normally in settings where they are comfortable, secure and relaxed.
Over 90% of children with Selective Mutism also have social phobia or social anxiety, and some experts view Selective Mutism as a symptom of social anxiety. Others view it as a separate, but related, disorder. It is not yet understood why some individuals develop typical symptoms of social anxiety, like reluctance to speak in front of a group of people or feeling embarrassed easily, while others experience the inability to speak that characterizes Selective Mutism. What is clear is that children and adolescents with SM have an actual fear of speaking and of social interactions where there is an expectation to talk. They may also be unable to communicate nonverbally, may be unable to make eye contact and may stand motionless with fear as they are confronted with specific social settings. This can be quite heart wrenching to watch, and is often very debilitating for the child as well as frustrating for parents and teachers.
For more Information on Selective Mutism, see Selective Mutism
We thank you all for your continued Prayers!
Bob, Kathy, Matt, Tim, and Laurel

Links for Parents of Children with Cancer

"Happy moments, praise God, Difficult moments, seek God, Quiet moments, worship God, Painful moments, trust God. Every moment, Thank God"!


The Tornado
"The childhood cancer experience can best be surmised by relating it to a tornado. It was the single most terrifying experience that our family has ever experienced. Our personal tornado hit us without warning. No sirens announcing its coming and absolutely no chance to prepare. It was upon us in an instant and we were all being tossed about on the raging winds of uncertainty. We were all scared and quite literally face to face with the very real presence of death. In an effort to comfort those that are currently being tossed about in those same winds of uncertainty at this very moment I could lie. I could tell you that my family survived unscathed. I could say that once the storm passed we embraced the sunny skies and that we've been living happily ever after. The problem is that anyone that has ever been swept up in this tumultuous tempest would most likely take offense to that and rightfully so. They would take offense because deep down they know the truth. When the tornado called childhood cancer hits your home and your family, itquite literally destroys it. It rips off the roof, shatters, the windows, and tears the entire structure from its foundation. It will leave in its wake a bittersweet longing for the way things used to be; a euphoric sense of victory through faith for having survived; and a heartfelt desire to build a new on that old foundation of family and home with new found insight into what is truly important. Author Unknown
Journal
Wednesday, March 18, 2009 2:53 PM CDT 4/17/09: Prayers Requested. I just lost my job do to major cutbacks. Pray I can find something and QUICK! The company Bob & I work for has been cutting back for over a year now. We were told more cutbacks this month and in June. They have cut almost all us 'indians' and left only chiefs.
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I hope everyone had a fantastic Easter!!! Laurel looked so pretty in her purple dress made with love by Ms. Juanita!!!!
Laurel had a couple of Firsts on Easter Sunday!!!! Can yo see me beaming with pride?
Laurel actively participated in her first ever public Easter Egg Hunt!!! It was the one at church w/only about 12 kids in her age group. In the past she would literally freeze up (like a deer in headlights) and wouldn't move! Even at home she wouldn't/couldn't? participate until last year!
Also, we went to the Cole Brothers Big Top circus. When I bought tickets for the event, I made sure we did NOT get front row seats - as I worried she would be too scared! We got to our seats and Laurel demanded to know why we didn't have front row seats!!!! Wow! And she didn't get scared until the very end when they brought out the HUGE canon for the human canonball.
She cannot wait to go again next year!
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Ugh - Laurel just got back from the dentist. He has told us that she will need braces by the time she is 9 yrs old - GULP! That's only 18 mos. away! How does ANYONE pay for braces in this day & age?! Wish us luck! Just maybe her hospital bills will be nonexistent by then? LMAO
Add another Beautiful Angel: Cassidy lost her 4 yr battle on 3/17/09.
(3rd time trying to update???) OK, that ticks me off – I typed my update here yesterday morning and it’s not here?????
So here it goes again!
First off, Only good news w/an added bonus. Laurel remains Healthy & Cancer Free! And clinic upgraded her to Long Term Survivor!!! OMG! I was in shock! I was expecting another set of scans next year (5 yrs o/t). But they feel confident that she is a success case!
Now for the boring stuff. As usual, I got very little sleep the night before as I was worried @ oversleeping! Up at 4:30am, Laurel and I hit the road at 6:00am into Dense FOG! UGH! We stopped at Walmart 20 mins. From hospital to buy her a disposable camera, when I realized that I had left my debit card at home!!!! EEEKS! I was able to write a check for $20 over the amount – Thank God!
We got to the parking deck at 8:20am. 1st 3 levels were packed already! Found a space ½ up the 4th level. Whew! Laurel & I walked to Rutledge Tower (10 min. walk), got on elevator – and accidentally got off on the 3rd floor! OOPSY! LOL (didn’t realize it until I tried to check in). So we got back on the elevator to the 4th floor to check in. WRONG FLOOR! Hema/Onc clinic moved to the 6th floor, (& opposite wing). So up we go, now it’s 8:40am – so chances of blood draw prior to were slim. Since it was all new area, I felt so out of place – Laurel just ran to the playroom. 10 min. wait to get her CXR orders and we were off and running to the Hospital. First stop of course is Radiology check-in – another 10 min. wait! Then to Peds Radiology waiting room. Char came over 5 mins later and took us back. As always we love chatting with her & spending that 20 mins. In the room.
Char then lead us straight to X-ray. Huh? Last time she did that, she saw something on the scans!!! I did NOT panic! The x-ray tech set Laurel up (Laurel didn’t need help, she’s an old pro at this now!) I think he was almost impressed? We got the all clear for both, and ran back to clinic on the 6th floor of Rutledge by 9:45am. With this new set up, u can walk in and no one realizes it – do NOT like it. And the ‘assistant’ at the front desk I don’t think knows a thing about anything?! I finally found Cindy and she said she would get the orders for Laurel’s blood draw.
30 mins. Later she came out with them. UGH! IMO they should’ve been waiting at the front desk for us! So off we run down to the 3rd floor and were called in almost immediately. Laurel did not go in easily. She was crying and putting up a fight. I tried to drag her in (physically). The nurse was NOT happy to see either one of us acting like that! She informed Laurel that she needed to stop crying NOW and to make a decision: either sit in mom’s lap or lay down on the table while 2 other nurses hold her down. The nurse had to ask Laurel several times what her choice was. She screamed the whole time (she hates the tourniquet with a passion).
So off we run back up to the 6th floor. Cindy saw we were back @ 10:45 – we just had to wait for the doctors. (Oh, we got the u/a sample as soon as we got there! Gone are the days that Laurel holds her urine for several hours!). 11:15 we get called back to see the Onc. Another one we’ve never met. Very pregnant! LOL Laurel instantly fell in love with her as she just kept talking to Laurel! Asking her all the questions – and only looking to me if Laurel hesitated. This was when we were told we were definitely in the Long Term Survivor status and would start Long Term clinic next year. Cool! I did ask @ kidney guard since she plays soccer. This onc said it really was unnecessary as it would take a really hard blow straight to the kidney to harm it. She said it’s pretty well protected by muscle, etc.
Onc told us to wait for Cindy to bring us our discharge paperwork. She said Laurel can go back to the playroom vs waiting in the exam room. 11:45 I go to look for either the Onc or Nurse Cindy. The Onc saw me and was surprised “You’re still here? Let me go find Cindy!” Cindy comes out and apologizes – miscommunication abounds! LOL Seems we didn’t need to wait for paperwork. We will get it in the mail!
Ugh, I had an appointment at 2:30pm in Murrells Inlet (but was to get there 15 mins. Prior to). As we get to the gate of the garage, the attendant asks for $3. Huh???? She’s a patient, they don’t pay. Well, seems THAT too changed! LOL Out patients pay .75/hour not to exceed $3.00. Great. So my $20 is now $17. That’s enuff for fast food! We swung by Wendys drive-thru. As I get back onto Hwy. 17 I realize I have only a quarter tank of gas left! Eeeks, not enough to get us to Myrtle Beach!! Thank God there was a branch of our bank up the road (Mind you, Mount Pleasant is so confusing & crowded, and most businesses sit back away from the road out of eyesight.). Whew! Wrote a check for cash and stopped for gas, and off we went to get home.
Laurel was so excited about ‘graduating’ into Long Term Survivor status that she wanted to call Daddy and then her Teacher to give them the good news!
We got to Inlet Square Mall by 1:45pm – where I check Laurel into a “Kids” place so I could go ‘work out” to lose my extra 45 lbs. I’ve gained these past 2 years. We got home right at 4:00pm. I was exhausted. Laurel was NOT! LOL
Please continue to pray for all children fighting these awful adult illnesses and diseases. Pray for Comfort to those families who have had a child earn Angel Wings. Pray that our Nation makes a right choice for our next President.
With Love, The Urban Family
Continue to pray for the many many many familes who have lost a child to this Beast:3/17 Angel Cassidy ; 2/27/09 Sweet Sigrid earned her wings. 2/28/09: Princess Haley Hart (CP) earned her wings as well. Dear Chelsea 2/20/09,Brave Matthew (his CB page has been discontinued); 4 y/o Gabriel ; Beautiful & Sweet Sammi , Gorgeous Amelia ; Wonderful Bryce (2/14/08); Sweet Mackenzie (www.carepage.org "Mackenzie") Feb. 2008; Precious Sadie Feb. 2008; Angelic Sam ; Beautiful Abigail Rose , Adam Jeremiah, Mark , Jessica, Jon , Diego, Brock , Mamie, Josh, Tyler, Zach, Haley, Kyle, Patrick, Mason, Brooke B., Brooke C. , Hanna , Kersey, Talia and many more. Pray that they forever feel their child's loving arms around them thru God's Eternal Love.
I pray that our new families have had a chance to find us at Association of Cancer On-line Research (acor.org)for support, information, etc. Click on: Register LISTSERV Password . It took me (& others a couple of tries to get registered - but it is soooo worth it!
Also, another place for Wilms families is Wyatt's Friends , an MSN Group that was started by Kris Rech in honor of her son Wyatt who was born w/BECKWITH-WIEDEMANN SYNDROME and fought & beat Wilms. Kris also is very involved w/CureSearch and the Gold Ribbon Days in Washington DC (this past June 19-21).
Research / Disease Areas Dollars In Millions Disease..............2003......2004......2005......2006 Breast Cancer.........693......708......716......716 Colo-Rectal Cancer....296.......297......298......298 Lung Cancer..........297......297......300.....300 Prostate Cancer......279......378......381......381 Children's Oncol. Grp..29.......29.......29.....29
Read Journal History
Hospital Information: Patient Room: Charleston, SC Happy Mail accepted at: c/o 7421 N. Kings Hwy. Myrtle Beach, SC 29572 hospital: MUSC Children's Hospital
Links: http://www.acor.org/ped-onc/hp/wilmspages.html List of Children w/Wilms http://www.acor.org/ped-onc/diseases/wilms.html Wilm's Tumor site http://www.wilmstumour.com/index.asp Wilms Tumor info for Families & Friends!!!!
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