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Gavin's Story


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  #1  
October 30th, 2006, 10:40 AM
Mommy2Monkeys's Avatar Platinum Supermommy
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OK this may be a little long but here is Gavin's story.

Gavin's Story
Gavin came into this world 3 weeks early. He was born blue but all he required was a little oxygen and lots of love!

When he was about 2 weeks old we started to notice he was really fussy .. after taking him for a visit to his doctor she confirmed he had a touch of colic. So we took the actions to try to make him feel better (change his formula rock him all night etc)Instead of getting better he just seemed to get worse! He would stay up all night screaming and crying in pain. On another visit back to the doctor she couldn't find anything wrong with him other then colic .. he was growing good just clingy and gassy! It was on that doctor visit that we were also informed that Gavin's newborn screen came back abnormal ... and we went back to the hosptal for another one. While there instead of drawing labs from his foot the nurse drew them from his arm ... We had no idea that one moment was going to change our lives forever!

About a week after the lab draw we were due back at the doctor's for Gavin's one month well baby visit. As my mom was giving him a bath she noticed somthing horriable! On his right arm where the nurse had drawn blood from just a week prior was a pretty good size ball shaped mass! Our first thought was my 6 year old had picked up from the bassinette and hurt his arm but he didn't seem to be crying over it so that scared me. We got him ready and rushed him to the doctor and her first thought was it appeared to be broken !!! So we were sent over to the hospital for Xrays , but with him being so little even our doctors Orthopedic surgeoun could not figure them out. So it was advised that we go to Riley where their XRay techs were better at dealing with such tiny patients.

After spending a night in the ER one of the Orthopedic Doctors thought it to be a collection of blood from the lab draw that had collected under the skin. This was on a Friday morning. He asked us to come back the following Wed. so he could check up on it with a follow up Monday morning to our regular family doc so she could measure it for him. He reassured me that he didn't think it was much to worry about and that it would more then likely go down over the weekend.

Well the weekend came and went and it in fact didn't go down but looked to be a little bigger! So on Monday morning we went to our doctor and she measured it ... it was 2x3 on Friday and by Monday it was 4x3!!! She updated the Ortho Doc and we were told to be there Wedensday. I just knew it was bad news!

On Wedensday we went to the Ortho doc and he looked it over again and indeed it had gotten bigger.Gavin was scheduled for a MRI the next day and a Biopsy for that Friday! He let us know ahead of time he thought he was dealing with a cancerous tumor but wouldn't know more till after these 2 test. Gavin went in for his MRI and did outstanding .... and then the next day was the big B day as I like to call it. Another day that will forever change our lives because on this day we were told our precious 1 month old son had Cancer!

We were told he had what is called Infantile Fibrosarcoma a very RARE cancer of the soft tissue that some infants are born with. It all made sense now all those nights my poor baby had spent crying and screaming it wasn't just colic that was hurting him but the cancer in his arm.

Withen 2 weeks and a couple more test Gavin had a central line surgery and withen a day he started chemo. We were told early on that he may lose his arm at the elbow if the chemo didn't work. The tumor had already grown just a little bigger then a golfball but on his little arm it looked HUGE!

Gavin had 4 rounds of chemo consisting of a big one with all 3 meds and then for 2 weeks just one med a week. This really was hard on him like any child but with a little newborn you could just imagine he was so weak and frail and while other babies his age were already over 10 lbs Gavin was barely making it to 8 lbs.

But after 4 rounds of chemo the tumor had shrunk remarkably!!! And we were now ready for surgery ! Gavin had his surgery to remove the tumor and we were optimistic that things went great! He even got to go home the next day!!! Sadly a week after his surgery on an apointment to the Ortho doc to remove his bandages we were delt the devastating news that the cancer was not gone and it looked to be worse then what they imagined. Where as the tumor had shrunk and they were only expecting to find 10 percent if not less cancerous cells left there was over 70 percent! The cancer was still on the tissue surrounding his tiny lil bones. We were told then this time he may lose his arm. I prepared myself and kept saying I would rather it be his arm then the life of my beautiful baby boy.

A week later he was sent back into the OR for another surgery on his precious arm ... This time they were taking the tissue off the bone (he had already lost a large amount of muscle and tissue and nerves during the first surgery) a patholigist was on hand for this surgery and would determine the fate of my baby boy. After 2 hours of surgery we were told the surgery was a success and Gavin would be able to keep his arm!!!!

He has extensive damage to his right arm and is now going through OT once a week for 60 mins and PT 2xs a month for 60mins. He is behind in alot of things but he is determined to do it all and not let his arm or anything stop him. And we are happy to announce that on JUNE 29th, 2006 Gavin was pronounced in Remission and CANCER FREE ... He is my hero and I am proud to call him my son!

We will still have to be at Riley quite a bit .. Gavin still has to see his cancer docs to make sure it NEVER comes back ! We were told for at least 5 years! But thanks to the Doctors and Nurses at Riley Gavin is a happy and joyful 8 month old.
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  #2  
October 30th, 2006, 03:46 PM
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I am so happy to hear your little guy is in remission! How wonderful! I hope he stays in remission until he reaches that cure mark in 5 years. My daughter just hit her 5 year mark last year...it can be done!
He sounds like an awful brave little man and I hope he continues to make healthy strides against this horrible disease.
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  #3  
November 3rd, 2006, 10:37 PM
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I am just a lurker but wanted to share with you that your story really touched me. I am sitting here in tears and so happy to hear that he is doing so well. I am so happy for your miracle. Cancer has touched my life through my SO who almost died of it and I cannot even imagine what it would be like to have to watch your child go through it. I wish I could give you all a huge hug.
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  #4  
November 9th, 2006, 09:05 PM
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Im also a lurker and he is one strong lil man. I got tears reading your storie. No baby or mother should have to go such a thing. Im always thinking of him.
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  #5  
November 21st, 2006, 08:51 AM
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Im not part of this board either I was just reading through and I have to say what a strong and wonderful little boy you have. Im so happy that he is in remission, that is wonderful news.
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  #6  
November 21st, 2006, 01:45 PM
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my son is at 6 years now .You and your son will be in my thoughts and i hope he continues to have graet improvement.
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  #7  
November 29th, 2006, 10:02 AM
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I am so glad I came across this post. I remember when you found out and our entire Forum (August DDC 2006, now a PR) made blinkies and were praying for you guys. I have been thinking about Gavin a lot lately and am so excited to hear the progress of your little angel! He is such a blessing and what a little fighter. I pray that he continues his fight over cancer and you never have to go through that again.
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  #8  
November 29th, 2006, 10:22 AM
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I am so happy to hear he is in remissioN! CONGRATS GAVIN!
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  #9  
November 29th, 2006, 10:28 AM
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Wow, what a brave little man... I am sending my thoughts and love for you and your family.
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  #10  
November 29th, 2006, 10:39 AM
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Your story brought me to tears! What a strong little man he is! I have thought about him but couldn't remember what room you post in to see if there was an update. Congrats on Gavin being cancer free! I will keep him in my prayers.
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  #11  
November 29th, 2006, 06:50 PM
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thank the Lord he is alright!!! what a miracle you have there!!!
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  #12  
November 29th, 2006, 11:12 PM
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I will continue to keep your little guy in my thoughts and prayers!
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  #13  
December 17th, 2006, 07:11 AM
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Thank you everyone for your kind words ... they mean alot to us.
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  #14  
January 19th, 2007, 10:09 AM
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What a strong, special, little boy you have! You are a remarkable mommy!

Smalll world! I work in Greenwood, IN!
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  #15  
April 30th, 2007, 02:42 PM
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what an amazing story!! thanks for sharing. he sounds like a very strong little boy : wub:
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