Gabriel Rambeau

Welcome family and friends! Our little angel has come into our world and taught us all so much.  From the day he was born his journey began in an unexpected way.  Gabriel's page will have updates on how he is doing and where he is in his care.  We will also post all his updates here when he is in the hospital.  Caring bridge does not support posts so feel free to send me messages on facebook messenger (Laura Rambeau) We love you all and God Bless!!


When you first meet Gabriel you may not take a second look to really see how different he really is.  Gabriel has always had an angelic quality to his character.  He has always been able to make everyone around him feel happy and his smile can brighten any day.  


On June 23rd 2008 Gabriel Alan Rambeau was born with a rare occurance.  Soon after his birth the nurses found in the nursery that Gabriel had a golf ball sized lump coming out of the left side of his chest.  Dr. Cannon my doctor examined Gabriel and called his pediatrician Dr. Hill immediately.  She rushed over and they found that Gabriel was perfectly healthy but no one had ever seen any baby born like this.  So 2 hours after birth Gabriel was rushed by ambulance to Saint Louis Children's hospital.  An oncologist was assigned to Gabe's care.  He believed that it was a rare tumor that only 100 or so people have in the world. They Performed a CT of his chest because with these tumors they are an overgrowth of cells that attach themselves to the chest wall and feed on the ribs and are fed by arteries.  The chest CT reveled 3 more tumors inside and one small one under the one on his chest.   At 2 days old Gabe underwent his first surgery to diagnose and remove the tumors on his chest.  Gabe was diagnosed with Mesenchymal Hamaratoma's of the chest wall.  Gabe did amazingly well and only had an inch incision on his chest.  at 5 days old he got to go home.  At 3 months old he had his second CT scan to check on the progress of the tumors inside his chest.  One tumor that was a golf ball size on the 2nd and 3rd ribs had grown to the size of a soft ball and was crushing 3/4 of his left lung.  At 4 months old Gabe underwent an enbloc procedure of his left chest cavity to remove this aggressive tumor before it damaged his left lung.  During the procedure Dr. Ghandi had to remove the 2nd thru the 5th ribs because the tumor had completely eaten them away.  Gabriel has an incision from the top of his left scapula that J shapes down the scapula and under his arm.  Gabriel was in ICU for 2 days and 3 days in the Cardiac thoracic floor.  Gabe was in tremendous pain!  He did not sleep nearly at all for about 2 weeks.  After his fever broke from surgery he bounced back like it was nothing, and since then Gabe has showed tremendous strength and courage with each new obstacle and surgery.  At 6 months he had a repeat CT and his tumor on his chest that was shaved had doubled in size but the remnants from the surgery were unchanged.   At 9 months the tumors were unchanged thank God and the 2 inside that were not removed were no longer showing up on scan.  At Gabe's 9 month well visit  his head growth had fallen off the chart and his pupils were different sizes.  We though the worst another tumor.  Gabe had an MRI that came back clean and an ophthalmologist examined his eyes to diagnose Gabe with Anisocoria that is genetic and Horner's Syndrome witch was caused by the Soft ball tumor. It had damaged a nerve that deals with constriction and dilation of the pupil.  Gabe's left pupil is half the size of his right.  When Gabe was 8 months old he was put in the hospital with RSV and a chest scan revealed a curve in his spine.  After a MRI and multiple x-rays of his spine Gabe was diagnosed with Thoracogenic Scoliosis that was progressing very rapidly. The surgery and the missing ribs caused his chest cavity to start to collapse on itself.  Gabe was diagnosed with Thoracic Insufficiency Syndrome at 12 months.  By 15 months old Gabe had a 70 curve. VEPTR was implanted to control the curve.  He devleoped MRSA with his first rod and had 5 surgeries in 6 weeks.  He was on antibiotics by pic line for 10 weeks. he had to carry a  pump on his back. 17 months VEPTR was re implanted and he has had 3 separate implanted rods since that he has had extended every 6 months until he outgrew each rod. At 35 months he had Cryotherapy to the tumors on his chest that started growing again. 9/27/11 Gabes tumors were stable.  As of 11/18/17 Gabe has had 26surgeries.  


Today he will have his last surgery! He is receiving his spinal fusion and our journey is at the end of this long tunnel! I can’t wait to see Gabe grow with life!