January 10, 2014

We went to Tampa toady to the All Children's Clinic near Moffit research center which is within the University of Florida Tampa campus.  We met the surgical team there and had an open discussion on Evan's options for limb salvage surgery.
 While we came home with no definitive path to take we did come home with a real comfortable sense that the team of Doctors and Nurses were not only up for the challenge that Evan is presenting but were eager to assist and had every intention of treating Evan as if he were their own son.  Each team member showed compassion, concern and dedication to us at all times.  One of the Doctors actually sat on the floor and discussed mind craft with Evan as it is one of his favorite games.  This same Doctor offered his phone to Evan so he could play a similar game with him all while sitting on the floor.

The team reviewed the disc of radiology and CT scans that were done in Fort Myers; showing us where the cancer was, where the fracture was and that there was very little muscle involvement.  They then discussed the two options that are currently available to us and told us they could not recommend anything yet as there needed to be further discussions with other Doctors and members of Children's hospital before they could recommend.  They stated that this center has done many limb salvage surgeries (enough to be the leader) that included both leg and arm.  They clearly stated that they had never had a case as young a Evan so that is why they are moving carefully.  It was very clear to they had only Evans' interest in mind.

They also were not sure if they needed to remove the growth plate at the top of the bone which would be very good for him.  They may have to in order to obtain clear margins but they need to research that further.

Option 1 is to have an expandable bone placed in his upper arm.  This will require multiple surgeries in the future in order to lengthen the bone as he grows.  The team has implanted this type of device in mostly lower legs and the lengthening process is usually on a monthly basis due to the fact that you want the leg to grow at the same rate as the healthy one.  In Evan's case since it is the arm and it doesn't have to be exact just symmetrical the surgeries can happen at larger intervals.  This prosthetic device in made in the UK and takes a few months to manufacture for Evan. The big question is: can the device be made for such a small person?  They didn't know and were going to find out so Option 1 may not be available.

Option 2 involves harvesting a piece of the smaller lower leg bone along with the blood supply and implanting it in the space that the cancerous bone was taken.  This implantation preserves the growth area of the implant and his arm should grow normally.  It takes a second team of plastic surgeons to take the bone from the leg so the time in surgery and complexity increases.  The lower portion of the implant will be attached with plates and screws.  His leg will grow normally as they are taking only a portion of the bone and it is the smaller of the bones.

One of the Doctors removed the plastic protective shield that was protecting Evan's fracture in the upper right arm. His arm looked great!  They removed the stitch that was there from the biopsy and ordered an X-ray to compare the new one to the first set.  There was nothing but good news upon the review of that X-ray!  First the fracture was healing over very nicely with new bone being laid over the fracture site.  The Doctor explained that the fracture had offset the bone somewhat and it was clear on the X-ray that in order for the body to try and straighten the bone, more new bone was being laid on one side as opposed to the other.  The other and most important bit of information was the difference in the tumor site.  The first X-ray showed a dark and well formed mass; the new one showed what looked like whitish cotton ball like structures in the same area.  The Doctor explained that the tumor was being worked on nicely by the first round of Chemo and that the Chemo was working!  We were simply amazed!

So I know that is a ton of information and we are still rolling all this around in our heads.  The team of Doctors will be back to us in a few weeks, probably by conference call or face time to give us more information on what they would like to see us do.  They welcome us going for second opinions but I am not sure that is going to be necessary.  One of the sites we considered to go to was CHOP in Philadelphia but one of the Doctors revealed that he did his fellowship at CHOP under the lead Orthopedic surgeon. It is apparent that this team will be consulting with the top surgeons in the Country on how to proceed.  We are reserving the right to seek second opinion as we go down the road to surgery.  It was also made clear to us that the Chemo treatments are the most important to Evan now and if surgery is delayed a bit it will have no bearing on the outcome.

Evan is due for next round of Chemo on January 16th so there may be a brief lull in posts until then.  his Uncle and family are due to arrive in Fort Myers on January 11 for a visit and mini vacation.  If anything of interest happens before the 16th i will post for all to see!

Thank you to everyone who is reading this blog and know I read every comment and appreciate any comments left.