Lots to Consider...Looking Forward to Quiet Waiting Time

Travis saw Dr. Jones (the orthopedic surgeon that inserted the plate and screws) on Friday for a routine follow-up exam. Dr. Jones' comments, "Travis looks great and his incision is fine."  Great news. All looked good on x-rays, yet it was only 8 days out from surgery. As long as the incision is healed, Travis can start the swimming lessons we had planned for him to start on the 21st (Travis was to have an aid anyway). Travis resumes PT in early August (helping T prep for school) and will be non-weight bearing / toe touch down for 6 more weeks. They said the low-grade fevers can happen after surgery/trauma, the time varies for each patient. As long as the fever is below 101F, things are ok. We also picked up a copy of T's medical records from the hospital stay since we were at Primary's, the NIH needs them to include in their report to the FDA since this break occurred while enrolled in a clinical trial. See below for pathology findings.

8 days after surgery

8 days after surgery

Travis participated in camp at Shriners on Monday and had a great time. The local Shriners hospital started up a camp for kids like T to be able to enjoy a camp experience. They have a pirate theme each week and Travis even gets a camp shirt. He had a great time and they were able to accommodate any games that would be weight-bearing for him. Love the flexibility there while still keeping him included. T had a huge smile on his face and is excited for next week.

Pirate-themed Shriners camp fun, T was happy

We saw Travis' physical therapist in the hall at Shriners and he was able to chat about how Travis was doing and the options/considerations. The physical therapist was amazed at the x-ray of how the bone broke due to compromised structure. T's current walker is too wide to easily maneuver through the doorways to the bathroom and upstairs bedrooms, so he provided T with a smaller walker to borrow. T honestly has one of the greatest medical teams ever assembled.

We also heard the volumetric results from the NIH last week. Long story short, Travis' plexiform stabilized from Feb to Jun! This is great news! The orthopedic surgeon ideally would like T off Peg for 6 weeks, he may be talked down to a shorter time-frame if T's eligibility in the clinical trial depends on how much time he's off Peg. We've talked with T's oncologist in Salt Lake City and we are interested in hearing the thoughts from his other medical team members. Still more questions to be answered and some depends when T's low-grade fever resolves.

It's amazing how our lives and thoughts changed in an instant...Scott and I have talked about things, but the answers will come in time and how the bones respond to the fracture. The pathology reports indicated Travis has tumor infiltration into the bone, no signs of malignancy. The plexiform tumor is just that, a plexiform with no signs of malignancy at this point in time. Whew...no signs of malignancy. We now have pathology confirmation about the tumor progressing into the bone. This tells us several things: 1) the femur was probably going to break sooner rather than later, 2) there may be more femur issues, 3) the femur healing remains in question.

First, and foremost, we pray for complete healing of the femur; obviously, this would be the best outcome possible. One of the complications of a fracture in a NF patient is non-healing of the bones, this could result in more surgeries/interventions. At this point in time, we have no way of knowing if he will heal or not. Due to the decreased bone density and tumor in the bone, the screws may/may not hold in place or the bone may/may not heal. There exists the possibility that Travis could fracture in a different part of his femur.

We have briefly tossed around ideas/thoughts/etc if the bone doesn't heal, keeping in mind T's bones may take longer to heal. (Lots of ifs and waiting) Some of these may lean toward science fiction rather than science reality and none have have been discussed with nor by T's medical teams, so there very well may be a MUCH better solution. Some thoughts that have gone through our heads: do they do full femur replacements like knees and hips, what about cadaver bones (have their own sets of issues), to amputation (not simple due to tumor).

Secondly, we pray the plexiform hasn't been "upset" by the surgery nor the break. We pray that all T's endured with the Peg will keep the tumor stable during this time. Even if the fracture completely heals, we still have to watch the tumor. It is a delicate dance between the two and with time. The tumor is so involved in T's pelvis, that even removing the leg would be disturbing a great area of tumor...thus the potential of creating more issues. Who knows what other ideas are out there...and if those options are even feasible.

For now, we pray for bone healing and tumor happiness, the ideal solution in the vast realm of the unknown territory we are now navigating. There are 2 areas to consider in the decisions: the bone and the tumor. Helping one area may create issues in another...there are no easy answers, there is no effective treatments, there is no cure. For now, no problems noted at his follow-up exam last Friday. For now, we enjoy this time of waiting...this waiting is easier than to try to wrap our heads around what may / may not happen. For now, we breathe...and pray.