2013...Roller Coaster Year Recap

As 2013 drew to a close, many posts I read on Facebook were to summarize 2013 in one word. That got me thinking, how I would describe 2013. The thought that popped into my head was...roller coaster. We had a year of many, many wonderful great times and many times where the news wasn't what we expected/hoped. I've stated several times this journey feels like a roller coaster, one where you're strapped in and have never been on before. You don't know how long you will be on this ride, if the whole thing repeats, nor what's up ahead. You just strap in and hold on.

As many of you who read this blog know, the end of January was an amazing time for our family. All 5 of us were able to take a trip to Florida for the Rolex 24 Hours at Daytona to watch the #73 Children's Tumor Foundation / Park Place Motorsports Porsche. Details of the race weekend can be found at this blog post. Travis finds his connection, zone, spirit renewal, whatever you want to call it at a race track. Interacting with the drivers, seeing/writing his name on the care is a healing time for him. Thanks to our parents and siblings, we were able to add on 2 incredible days at Walt Disney World before the race and the Kennedy Space Center after the race. Around a week before we were to leave, Travis was sick with the flu, tested positive. Fortunately, he was able to receive Tamiflu and was feeling pretty good when it came time for our trip.

February brought a return to Rapamycin for Travis to help slow down his tumor growth. We quickly returned to the routine like when he participated in the clinical trial. Overall, Travis did great with the added appointments and blood draws. Unfortunately, he had a few more mouth sores this time around; however, they didn't seem to bother him too much at times. We had some dosing adjustments, that was to be expected.

More fun and enjoyment came in the form of Miracle League Baseball. Travis (and the rest of us) was thrilled to be playing a team sport finally, he's cheered on his brothers for years. He played both spring and fall ball and loved every time it was game day. :) His smile caught many by storm and he even pitched a game at the end of the fall season in addition to hitting the home run one inning.

Travis pitching in the fall.

Twice this past year Travis had to "relearn" how to walk and/or get around. He stopped walking in April from what we later learned was a probable pulled muscle. For a short while, there was great concern that his femur possibly broke since he refused to bear any weight on his left leg. We were all relieved when the orthopedic team noted no fracture and probable pulled muscle. From there it's hang on tight, the roller coaster was just getting started.

A few days after the determination of a probably pulled muscle, I flew to Nashville to represent the Utah Chapter of the Children's Tumor Foundation at the annual Chapter Council and NF Forum for families. We are a strong network of individuals who enjoy spending as much time together as possible when we get together. :) This is a good problem, but a tiring one. During one of the talks during the NF Forum, I recognized T's legs as the example of "Bone Overgrowth". I knew that day was coming, but you're never truly prepared. Thankfully I had my NF Family there.

T's de-identified legs 

After catching up with a friend from Kwajalein that I hadn't seen in a little over 11 years, it was time to head back to Utah. The layover in Houston didn't permit enough time to have a quick visit with my parents, but I did have enough time to get a scoop of Blue Bell ice cream. 

By the end of April, it was MRI time and time for regular follow-up appointments with orthopedics and GI. Due to ongoing GI issues, we were to do a clean-out program with Travis to help resolve the GI issues. Poor Travis. No sooner had he finished with the program, he caught the stomach bug going around. Several trips to the pediatrician over 2 weeks with a stubborn GI bug diagnosis and the cyclic getting better/worse all seemed to fit. Travis' routine blood work at the end of May showed critical low potassium levels and at the routine exam T had lost ~10% of his body weight since the exam at the end of April (most likely from the previous 2 weeks). Obviously, T had no energy and had spent the better part of 10 of the 14 days in bed, not even wanting to play cars (know he's really sick then). T's geneticist wanted us to keep an even closer eye on T and to let him know if T's energy level drops again. The next morning, Wednesday, was the start of a 5 day crazy roller coaster.

Wednesday started with a call to T's geneticist to update him on the return of no energy and then trip to the pediatrician's office. The doctor, not his regular pediatrician, decided that T may be a little dehydrated and called the ED at Primary's to let them know we were headed there for hydration. Labs were repeated and T's potassium level dropped lower than on Tuesday (the day before), with potassium that low, Travis was admitted. In all this, T's Rapamycin level was very high, so we were to pull him off the medicine to allow his body to recover. IV fluids helped T's energy level return and the next day, T was discharged. I was leery of heading home since I noticed a marked decrease in his energy after the IV fluids were stopped and commented this to the drs at the hospital. They mentioned that is possible and said they would follow up with the results of the stool sample.

Within 5 minutes of arriving home, the ugly cycle reared it's head and we were only home 8 hours before returning to Primary's for another admission. Long story short, Travis had c difficile and couldn't keep the antibiotic in his system and was quickly getting dehydrated again. I think we arrived in a room around 3 Friday morning and were discharged Sunday afternoon. Fun times in the hospital with visitors, including his geneticist, teacher, cards and poster from school classmates and friends, and watching cheering on the GMG CTF car on the iPad.

Travis was able to attend the end of Kindergarten party and Kingdom Rocks! Vacation Bible School. He had a great time at both. We also went to Miller Motorsports Park to watch our friend race his kart that had the CTF logo front and center. There is truly some magic healing at the track for Travis, it's hard to explain and yet it is visible. We were at the track on a Saturday and one could notice the significantly improved energy from the day before the track to the day after the track.

With a negative c difficile follow-up test, we enjoyed the water park and pools on our passes during the summer. We all were amazed watching our garage rebuild project, covered by insurance due to structural damage from snow. We also spent a few hours at Arches National Park on the way home from Cheyenne and seeing Denver family. One could easily think the landscapes from the "Cars" movies was inspired in part by the scenery around Arches and eastern Utah. Travis also thoroughly enjoyed meeting bikers from the Pi Kappa Phi fraternity on the Journey of Hope North Route and bikers for the Bear Paw challenge to raise money for Shriners bikes. Travis briefly met Brad Paisley in August and received a guitar pick from Brad as he made his way through the audience. There's something about Travis...something that draws people to him, even people that have never met T nor know his circumstance. 

Brad briefly meeting Travis, notice Brad's smile.

Travis' Kindergarten teacher also moved up to first grade this school year and we are thrilled he has her again. His confidence with her soars and she understands him and how to encourage his best work. They are a great team. Travis enjoyed the NF Walk again in August and was all smiles. He played Miracle League Baseball again this fall and loved the time. Travis is a Tiger Cub and has fun in the scouting program, just like older brothers. September brought a visit from Noah the NF Awareness bear and a comment from T inspired the creation of a stuffed animal that has tumors located where T's tumors are located.

Another inch was added to Travis' shoe in early October and we learned that the tumor progressed 19% from April-July. Travis continued to get around school with the walker he received at Shriners in May, we all love the added mobility. Thanks to Paul Stastny of the Colorado Avalanche hockey team, our family enjoyed their game vs the Detroit Red Wings in October when we were in Colorado for Nolan and Barrett's hockey tournaments (both made the county travel team). 

Another routine MRI after we returned home and Travis fell ill again. We still don't know the cause of the illness as the virus panel came back negative for many, many viruses. He missed almost 2 weeks of school again this time around and lost a lot of strength. His physical therapist noticed the decrease and started having Travis go to PT weekly, we're now at every other week.

At Travis' routine Rapamycin appointment on Dec 3rd, we learned the volumetric results of the October MRI showed Travis' tumor grew ~40% from April - October. We decided (with T's doctor) to discontinue with Rapamycin starting that night and look for possible clinical trials. We added an oncologist to Travis' medical team and meet with her on Jan 6th, not saying cancer, but getting info on the next round of drugs. 

Travis and I are heading back to Daytona for the 2014 Rolex 24 Hours at Daytona. Something truly magical happens to him at a track and I know all the memories from the 2013 race helped him through the lower points of 2013. Even T's doctor jokes that he should write a prescription for T to go to a track, there is some connection. We head into some uncertainty in 2014, yet there will be more sprinkled donuts this year...feel free to join us on those days as support. Travis has captured some great moments at the dr's offices this year on camera...here are a few of my favorites he took and a few we took...

Travis taking a picture of Mike Pond, ortho guy at Shriners.

The picture Travis took of Mike Pond.

Travis' picture of Dr. Viskochil

We are so blessed.