momofalotofrugrats
31st May 2005, 06:05 PM
Hi everyone
Lauren had her surgery biopsy on the 23rd of May they deflated one of her lungs so they could get to the tumor for the biopsy she was then in Peds ICU overnight because they had a chest tube in her for the drainage from the site of the biopsy and also to help keep her lung reenlisted. She was doing good so they removed the chest tube on the morning on the 24th and had to wait 5 hours to make sure there was no problems and her lung stayed inflated. They released her that evening which was nice as it's a very depressing place. . We were told to watch her closely as she could still have problems with the lung. We were told that the tumor looked friendly what ever that's suppose to mean and was encapsulated which from my understanding means it hasn't spread. We finally got the results from the Biopsy late Friday afternoon they believe it's benign but can't be a 100% sure due to the fact that 1 in 4 of these type of tumor aren't truly benign even through they show benign. So it will still have to be removed due to this fact. The disease she has been diagnosed with is Neurofibromatosis or NF1 which is very rare it's only found in 1of 100,000 kids and normally in people at 10-40 years of age so it's very rare for a child her age to have this disease and already have the signs and symptoms. The tumor itself is called Ganglioneuroma or Ganglioneuroblastoma We have been give both terms for the tumor even though they are a bit different. We are currently trying to get her referred to a specialist dealing in the disease and also the tumor which is linked to the disease. The neurosurgeon at Portsmouth thinks he can remove the tumor and said he would try but since the tumor itself has wrapped itself around her spinal cord and is also in the spinal canal we don't want someone who says he can try he has never done a surgery on anyone as young as Lauren and has never dealt with this type of tumor or disease so wish us luck in getting Tri-care to agree to have her seen by someone who has. Soon as the referral for the second option is up in we be making an appt to see the specialist hopefully this is a quick process. As she will need to be followed for the rest of her life this is an incurable disease at this time so it's something she will be dealing with for the rest of her life. Soon as they figure out what treatment to do for this which they now believe was also a major part of why she has infantile scoliosis we'll let you'll know it's going to be a very long road but not that I've wrapped my head around it I can move forward and help get her the treatment she needs please keep praying for our little girl as she needs every single one. I will keep you'll informed as information comes to us or I find out different things. Cathy
Lauren had her surgery biopsy on the 23rd of May they deflated one of her lungs so they could get to the tumor for the biopsy she was then in Peds ICU overnight because they had a chest tube in her for the drainage from the site of the biopsy and also to help keep her lung reenlisted. She was doing good so they removed the chest tube on the morning on the 24th and had to wait 5 hours to make sure there was no problems and her lung stayed inflated. They released her that evening which was nice as it's a very depressing place. . We were told to watch her closely as she could still have problems with the lung. We were told that the tumor looked friendly what ever that's suppose to mean and was encapsulated which from my understanding means it hasn't spread. We finally got the results from the Biopsy late Friday afternoon they believe it's benign but can't be a 100% sure due to the fact that 1 in 4 of these type of tumor aren't truly benign even through they show benign. So it will still have to be removed due to this fact. The disease she has been diagnosed with is Neurofibromatosis or NF1 which is very rare it's only found in 1of 100,000 kids and normally in people at 10-40 years of age so it's very rare for a child her age to have this disease and already have the signs and symptoms. The tumor itself is called Ganglioneuroma or Ganglioneuroblastoma We have been give both terms for the tumor even though they are a bit different. We are currently trying to get her referred to a specialist dealing in the disease and also the tumor which is linked to the disease. The neurosurgeon at Portsmouth thinks he can remove the tumor and said he would try but since the tumor itself has wrapped itself around her spinal cord and is also in the spinal canal we don't want someone who says he can try he has never done a surgery on anyone as young as Lauren and has never dealt with this type of tumor or disease so wish us luck in getting Tri-care to agree to have her seen by someone who has. Soon as the referral for the second option is up in we be making an appt to see the specialist hopefully this is a quick process. As she will need to be followed for the rest of her life this is an incurable disease at this time so it's something she will be dealing with for the rest of her life. Soon as they figure out what treatment to do for this which they now believe was also a major part of why she has infantile scoliosis we'll let you'll know it's going to be a very long road but not that I've wrapped my head around it I can move forward and help get her the treatment she needs please keep praying for our little girl as she needs every single one. I will keep you'll informed as information comes to us or I find out different things. Cathy