Monday, July 27, 2009

Saw the Neuro Surgeon today...

Thank you all for your prayers and support. This has been a long 3 days of worry.
We met with the Neuro Surgeon, Dr. Pincus today at Shands. He showed us pictures from Jacob's MRI on 7-07-09, of the tumor Jacob's oncologist is worried about. It does appear to have doubled in size. It is located at the bottom of the brain stem - top of the spine, where the brain stem and spinal cord meet. (I can't remember the name of the spot and I didn't write it down) Dr. Pincus evaluated Jacob's balance and his strength in his arms and legs. We informed him that Jacob isn't suffering from any pain at this time. He said he wants to speak with a few other doctors/ surgeons and another doctor that works with NF patients and will get back to us next week. The approach he wants to take is more of a "wait and see." He doesn't want to jump right into surgery because the tumor doesn't seem to be causing Jacob any pain or problems right now. I respect the fact that he wants to wait and monitor the tumor. This is what I hoped he would say. What I didn't expect was why...Because of the location of the tumor, surgery is very dangerous. The part of the brain stem and spinal cord where the tumor is located controls not only Jacob's limbs, but his breathing and heart rate as well. So the neuro surgeon wants to wait and recommends Jacob return in September for another MRI and evaluation. The oncologist felt like the tumor needed to be removed over the next 2 months, but she wasn't able to be there today, even though she said she would. We are not sure why.So I am left relieved that Jacob doesn't have to go through any surgery as of today, but I am fearful of what the future will hold. I am more worried now more than before because of where this tumor is located and the damage it could cause or the damage the surgery could do. The neuro surgeon said he thinks the tumor will need to come out, just not right now.
I am exhausted, but thankful that Thomas, Bill and Jill were there with Jacob, Gavin and I today. Jacob was surrounded by family and a lot of love. He handled the news very well. He is so brave!
My hope is that these awful tumors will stop growing and let Jacob be - let him grow and mature into the wonderful young man I know he is going to be, really that he already has become. I pray that God will keep Jacob safe and surround him with His love and I pray that He will heal him.So as of right now - life will move forward - I can somewhat breathe again, for a bit.... with a constant reminder of how precious every moment is.
Thank you again for your prayers and support. Hope to see you all soon.

Much love

Friday, July 24, 2009

Prayers Needed for Jacob

As most of you know Jacob, my 13 year old son, has Neurofibromatosis type II (NF2).
Without getting lost in too much information - Jacob needs prayers and God's love more than ever right now.
After his most recent MRI I was notified by Jacob's Oncologist that one of his spinal tumors has doubled in size since his last MRI and it needs to be removed. (I was also informed that Jacob's right acoustic neuroma has grown, but they aren't concerned with it at this time.) We will go back to Shands Gainesville on Monday to meet with the neuro surgeon to discuss Jacob's options. I don't know any more at this time, but will update everyone after the appt.Please pray for Jacob, for me, for all of Jacob's doctors and family.Thank you.
Much Love