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 Post subject: NED
PostPosted: Mon Aug 23, 2010 4:21 pm 
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Joined: Fri Apr 02, 2010 10:49 am
Posts: 2004
Location: W. Michigan
Well, they finally called me back after 5:00 today. She was all cheery and said the test results were negative! I told her I was so worried, and why didn't they call me sooner? It's been a week.

Her response was unbelievable. She actually said to me "We don't call people back with negative results." I'm like "why would you not call people who are stressed and worried, and her response was "we have way too many patients to call back the ones that don't have disease."

UNBELIEVABLE!!!!!!

So good news on that front. Tomorrow I'll be assigned to a Cardiologist to figure out why my heart is so whacky.

Life goes on.....huh?

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25


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 Post subject: Re: NED
PostPosted: Mon Aug 23, 2010 4:51 pm 
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Director of Support & Advocacy, LUNGevity
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Joined: Thu Jan 09, 2003 11:09 am
Posts: 14985
Location: Texas
WONDERFUL WONDERFUL NEWS!!

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 Post subject: Re: NED
PostPosted: Mon Aug 23, 2010 5:15 pm 
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Joined: Fri Nov 12, 2004 11:27 am
Posts: 5686
Location: PA
Oh so happy, Judy. Now to get some answers to EVERYTHING else!!!!! I'll celebrate this news though! Here's to you!

Kasey

_________________
Kasey ~ 8 year survivor ~ Stage IIIb 'inoperable' (yea, right!) lung cancer
9/20/04 Dx lc
9/24/04 Bronchoscopy
10/08/04 CT guided needle biopsy
10/14/04 Dx Pancoast tumor - NSCLC 111a(?) - inoperable - incurable
11/02/04 2nd opinion - Sloan-Kettering - concurs with local dx and tx
11/03/04-12/02/04 Radiation x22 chemo x5 taxol/carboplatin
11/04 - 3rd opinion - FoxChase -turned away
11/04 FOUND LCSC & HOPE
11/04 4th opinion NIH - surgery possible
1/04/05 Successful surgery - RU lobectomy - all margins, nodes, and path reports are NEGATIVE
2/05 chemo x2 taxol/carboplatin
3/05 Esophagus stretched twice
4/06/05 bloodwork, chest x-ray, CT scan, PET scan, NED
5/05 2 more esophagus stretches
7/13/05 bloodwork, chest x-ray, CT scan, PET scan, brain MRI, NED
10/05/05 bloodwork, chest x-ray, PET/CT scan, NED
1/11/06 bloodwork, chest x-ray, PET/CT scan, brain MRI, NED
4/05/06 bloodwork, chest x-ray, PET/CT scan, NED
6/10/06 emergency appendectomy
7/12/06 bloodwork, chest x-ray, PET/CT scan, brain MRI, NED
9/26/06 bloodwork, chest x-ray, PET/CT scan, NED
1/10/07 bloodwork, urinalysis, chest x-ray, CT, PET/CT scan, arm CT, brain MRI, NED
7/11/07 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, NED
1/9/08 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT w/contrast.....mm 'spot' lower right lobe - watch and wait 3 months
4/8/08 bloodwork, urinalysis, chest x-ray, PET/CT scan, NED
10/14/08 bloodwork, urinaysis, chest x-ray, PET/CT scan, brain MRI, NED
4/15/09 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, NED
10/13/09 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT/contrast, NED
4/13-4/15/10 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT/contrast, PFT, echocardiogram, EKG, stress test, NED
4/11-4/13/2011 bloodwork, urinalysis, chest x-ray, PET scan, CT scan w/contrast, brain MRI, NED
4/16-4/18/2012 bloodwork, urinalysis, chest x-ray, PET scan, CT scan w/contrast, brain MRI, NED


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 Post subject: Re: NED
PostPosted: Mon Aug 23, 2010 7:11 pm 
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Over 100 Posts!

Joined: Sun Jul 15, 2007 7:32 am
Posts: 179
Location: Wisconsin
Judy I am so HAPPY for YOU!!!!!

I could have done without the wait. Not very nice to make you wait that long, but NED makes it a lot better.

Happy Happy Joy Joy. If I could do cartwheels I would :lol:

Libby

_________________
43 yr old female with a 12 yr old daughter.
May 2007 - Diagnosed with stage 3A Squamous Cell NSCLC.
5/15/07 - In hospital to have left upper lobe removed. Stage and cancer type was confirmed. Removed several lymph nodes, 2 tested positive for cancer. Home after 5 day.
5/24/07 Went to Oncologist. Did CT/PET scans (praying they got all the cancer out).
6/4/07 Got results, lymph node by main artery showed cancer. Can not remove due to location. Good news was that there was no sign so far that it spread any further than that. Set up an appointment with Radiation Specialist.
6/15/07 Receive chemo every week for 6 weeks ( Carbo & Taxol) and radiation 5 days a week for six weeks, (33 radiation treatments were planned). We stopped at 30 treatments because of 2nd degree burns on my back.
Finished radiation and chemo on 7/26/07. Was in hospital and had 3 ½ weeks off of treatments.
8/15/07 Started chemo every 3 weeks for 9 weeks with larger doses.
9/28/07 Finish final chemo. Will have scans done 11/6/07 and see Dr. for results on 11/9/07.
11/07 Received results, cancer free. Was told this was a good sign considering the stage. need to follow up every 3 months with scans.
8/09 - Now receiving CT scans every 6 months, just had one in Aug so far no signs of cancer. Made the 2 1/2 year mark. Still problems with inflamation with lungs due to radiation damage.
3/10 CT scan no sign of cancer. What a relief!
7/10 still going strong no scan for 1 yr now, next scan is March, I am nervous waiting so long but I will survive. I am a survivor.
3/11 CT Scan, No signs of cancer. Thank you God.


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 Post subject: Re: NED
PostPosted: Tue Aug 24, 2010 1:03 am 
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Joined: Sun Sep 10, 2006 6:26 am
Posts: 2542
Location: Hawaii
WAY TO GO!!

The other Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

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 Post subject: Re: NED
PostPosted: Tue Aug 24, 2010 5:16 am 
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Joined: Fri Dec 28, 2007 6:32 pm
Posts: 4769
Location: Key West, FL
Judy, WHOO HOO HIP HIP HOORAY! I know the insensitivity of the world sometimes amazes us. Now you have one hurdle cleared. Just keep plugging away as you do so well on the others. Let us know what the cardiologist says.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.


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 Post subject: Re: NED
PostPosted: Tue Aug 24, 2010 7:30 am 
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Joined: Thu Jan 27, 2005 7:10 am
Posts: 8424
Location: Greensboro North Carolina
congrats now go forth and celebrate tonight!!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!


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 Post subject: Re: NED
PostPosted: Tue Aug 24, 2010 10:21 am 
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Joined: Fri Sep 19, 2008 6:08 pm
Posts: 1422
Location: Crowley, Texas
That's great news! Congrats, Judy! That's one less thing to worry about as you tackle the other issues. Here's hoping there's more positive news from your next doctor visits.

_________________
Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com


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 Post subject: Re: NED
PostPosted: Tue Aug 24, 2010 1:26 pm 
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Joined: Tue Oct 07, 2003 11:05 am
Posts: 5392
Location: Montgomery Twnshp PA
Judy, this is terrific news. May it just keep on keeping on.

'Bout that doctor, you may not be the only patient, BUT, he is not the only doctor. That nurse should be tarred and feathered.

_________________
Ginny
Please use gdecoursey@aol.com for email.

Earl born 1/28/42 - dx 9/21/02 - died 8/18/04. He was the sunshine of my life.


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 Post subject: Re: NED
PostPosted: Tue Aug 24, 2010 3:15 pm 
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Joined: Tue Mar 13, 2007 11:00 am
Posts: 2604
Location: Auburn, Alabama
Love that NED!

Susan

_________________
76 year-old mom diagnosed with stage IV lung cancer January 5, 2007.

15 radiation treatments to the spine and four rounds of chemo, Jan-May, 2007.

Stable disease May, 2007-May, 2008.

Bone scan May, 2008 shows new mets in the spine, pelvis and ribs.

July, 2008--finished radiation and has a Quadramet treatment.

October, 2008--Scans show mild progression. Began chemo (carbo/taxol/avistin). Will have four rounds of threatment (every 21 days) and scan in January.

01/05/2009--TWO YEAR SURVIVOR!

4/2009--STABLE! No treatment. Next scan in July

7/2009--Scan shows pleural effusion. Fluid drained and malignant. Cancer has spread to other lung and a 13 mm lesion is seen on the liver. Mom to begin Alimta on 8/3

11/2009--Alimta was hard on mom and scans showed progression.

12/2009--began Tarceva, noticed almost immediate improvement.

2/25/2010--Celebrated Mom's 80th birthday!

5/15/2010--Mom watched her oldest granddaughter graduate from college and then paritied well into the night! She's still feeling great.

6/15/2010--Mom watched her youngest granddaughter graduate from high school. Still feeling great!

8/2010-10/2010--Mom begins feeling tired and stays in bed more and more. Scans reveal that the cancer is moving rapidly throughout her body.

10/13/2010--Mom wins her battle once and for all, and passes to a place where the cancer can no longer touch her.

For a more detailed timeline see:

http://www.lungevity.org/l_community/viewtopic.php?p=360385#360385


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 Post subject: Re: NED
PostPosted: Tue Aug 24, 2010 3:38 pm 
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Joined: Thu Apr 15, 2004 4:01 pm
Posts: 2049
Location: MA
NED fits into all styles of dress, house decorations, car colors etc.......he is just so right where ever he is. Wonderful news that he's in your life, now about that doctor...........
Congratulations
Geri

_________________
Diagnosed limited sclc Nov 2001
Clean PET scan May 2002
June 2004 Clear CT scan and brain MRI
Good for another 6 months!
Dec 2004, another clean bill of health. next check w/scans may be my last!
June 2005, another good check up, next appt in a year and then I'm finished!!!
Sept 2005, Pericardial effusion, window cut, no cancer found, thought to be viral in origin.
Back to 3 month check with oncolgist. but NED is still my best friend.
Jan 2006, everything still clean, this cancer officially cured. Next check up in a year. NED still in residence.
Jan 2007 clean bill of health again!
April 2007 dx breast cancer, surgery in May and June. Lymph node involvement
August 2007, started chemo, radiation will follow
Dec 2007 Chose no radiation, risks high for small benefit because of lc radiation. Chemo causing shortness of breath.
Jan 2008 Talc procedure done after needle aspiration doesn't work for long (2 days). Now using oxygen most of time.
Feb/Mar 2008 One month hospital stay due to congestive heart failure, low blood pressure and high heart rate. Permanant valve damage.
Mar/Aug 2008 fighting for breath and energy.
Aug 2008 started breast cancer adjunct therapy, life was miserable with side effects
Oct 2008 changed medications and life was even more miserable. This one lasted another month.
Dec 2008, feel better than in last 2 years, finally I am myself again and no bc treatments!
Jan 2009 PET shows no sign of malignancy ANYWHERE! Echocardiograms are now more regular for me than cancer screens.
I now take pills that conteract pills that conteract pills that conteract pills...............and on and on, but I'm still entertaining NED and life is good.
August 2009, CT still clear, back in 6 months for another CT. NED still lives here!
Dec 2009 More congestive heart failure looming.
Feb 2010 Heart block - code blue but eventually brought back, pace maker installed, new birthday Feb 6th - I came back!!!!
March 2010 Heart damaged beyond repair,only a couple of months left to live. Not a transplant candidate (2 cancers) so LVAD implanted. I'm still on the green side of the sod but now as the bionic woman and my future is still as long as it would have been before lc..........expiration date unknown (or long as I remember to change my batteries) !


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 Post subject: Re: NED
PostPosted: Sun Aug 29, 2010 11:49 am 
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Joined: Sat Jan 08, 2005 8:13 pm
Posts: 6760
Location: Voorhees, NJ (near Philly)
WHEW!!! Way to go!!!! A huge relief !!!!!

Maryanne :wink:

_________________
"Life is not measured by the number of breaths we take...but by the moments that takes our breath away"
[size=75]
Husband Joel, 58 dx 10/18/04 Smoker since age 15 stopped when diagnosed
Adenocarcinoma- stage 1B
Lobectomy Left upper lobe on 12/15/04
biopsy on lymph nodes - negative NED
1/13/04 Oncologist appt.to see about preventive Chemo.
Cancelled due to chronic fatigue
1/12 fentynal patch for pain
1/14 discontinued Fentynal patch bad reaction
1/15 Blood test showed high T levels
2/1 Endoconrinologist visit diagnosed over-active thyroid
2/8/05 took Radioactive Iodine to kill thyroid
2/16/05 appetite back, fatigue leaving
2/24/05 visit with Pulmonary Doc. Breathing at 96% capacity,
Next visit 3 mos.
3/9/05 Endocrinologist visit -T levels went from 25 down to 5.
3/30 started Synthoid(thyroid med)
3/31 Oncologist. appt. CT results NED...
4/14 starting adjunctive Chemo (carbo/taxol) 4 treatments
3 weeks apart.
6/15/05 Joel finished chemo, chest X-ray clear, Next CT in August
9/01/05 1st CT since Chemo.. NED
11/17/05 CT - small nodule found 4 or 5 mil. in his good lung
1/10/06 CT - nodule Stable
7/2006 CT/ Nodule stable
10/2006 CT Nodule seem to have grown from 4 to 7 mil.
10/2006 Pet- showed some uptake
10/2006- operation- wedge section right upper lobe turned out to be cancerous 2 nodules next to each other. 2 different types of cancer. 1 squamous cell carcinoma (new primary)2- adenocarcinoma-(not sure if new primary or metastasis)
May be restaged to IIIB
11/07/2006 will start 4 rounds of taxotere. 3 weeks apart. Will take Decadron before, day of and day after. Will get a shot of Leunesta the day after. Here we go again.. Joel's attitude.... great as usual
Horrible reaction to the neulasta shots. One night(New Years eve) went to ER. Spent 3 days in hosptal.
Feb 2007 finished chemo.
March 2007 had his CT .. as expected right now all is clear.
June 2007 NED!!!
Sept 07- CT- small nodule 3.5 mm
Going to do another CT in 6 weeks.
October 07- CT done, results STABLE...YEA
Jan. 2008... STABLE!!!
April 2008 little growth but still called stable
July 17 208 nodule doubled in size to 9mm. Needs Pet Scan, tests, hopefully cyberknife...
July 29 met with his surgeon... said Cyberknife is the way to go.
August 1- Cyberknife visit... Joel is a canidate, its a go...Happy B-day Joel...
Sept 22, 2008 finshed up the last of 3 cyberknife procedures
Nov. had CT scan
Nov. 9th results of CT from Cyberknife..... Tumor completely gone... right now NED!!!
Feb. 09- Pet/CT results. . . NEd!!!
May 09 Pet/CT results. . . NED!!!
Sept. 09 Pet/CT results.....NED!!
Jan. 2010--- NED!! Pet now will be every 6 months.
June 8,2010 Pet scan on our Anniversary... hope thats a good sign..
June 17, NED!!!
Dec. 30,2010... NED!!!
June 20,2011... NED!!!
March 2012....NED!!!

pic of Joel and our daughter Nicole at walk NOV. 07

[img]http://www.freewebs.com/beansprouts2005/nik_and_dad_1LC_walk.jpg[/img]

http://www.babababies.com


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