Thoughts after 6 Injections

Every week I inject my child, my baby with poison...a targeted poison, with an unknown outcome. Other patients taking this medicine experienced shrinkage (none greater than 20%), while others experienced a slow down or no change. A child died while taking this medicine, not directly related to the medicine as far as the investigation could determine. This medicine makes my child feel like crap and run a high fever if Tylenol and Ibuprofen are not in his system at the appropriate times. All of this for something that may or may not work. Yet, we try...with a mild chemo.  *deep breath*

We are fortunate that Travis' hair won't fall out. We are extremely lucky that he can go to school, participate in fun activities, and continue an otherwise "normal" (whatever that is) life. Next Saturday Travis returns to the field to play Miracle League Baseball. :)  There he plays a sport with other children and young adults that all face a challenge. The smile on his face while on the field is similar to that when he's at a race track (his true element).

Travis saw Dr. Afify on Tuesday and T continues to amaze us all! T's labwork looked great and no major side effects now that we know how to manage the fevers. We were reminded Thursday night that we need to remain vigilant with the medicine combo for now. He felt so good, we missed the 6hr repeat of Tylenol and even with Ibuprofen his fever spiked to 102.2F. A reminder that we need to stay on our toes for fevers. Fortunately, Travis felt good Friday morning and attended school.

Donut after Tuesday's blood draw.

Donut after Thursday's injection.

People ask, "How do you do this?" It's not easy, but we pray (a lot). We rely knowing that God knows the circumstances and is bigger than NF. I remind myself of all the wonders and miracles he's put before our family throughout this journey...the meeting of Dr. Viskochil at a conference where the NF1 topic was determined the previous year (a conference not held since the one in 2010), seeing Nolan's former baseball coach at a restaurant who knew a Shriner, the good weather for the drives to/from Salt Lake City, the move to Salt Lake City, the trips to the Rolex 24 Hours at Daytona, and so much more.

We try (some days are easier than others) to see the positive in the situation, have a positive outlook, something encouraging. I spent some time existing after we received confirmation about the plexiform 4+ years ago, that was a rough time. One's outlook/perspective changes after you give your child shots of medicine that makes them feel so crappy, hoping and praying it will work work. Others this happens sooner or other reasons. You find the things you love and focus on that. You celebrate and enjoy the good moments where they are, allowing positive "vibes" to flow all around. You recall the fun times when you're not feeling the best, for Travis that would be a race track/racing/drivers/playing cars while at a track/etc. You rejoice in all the wonderful gifts you have and appreciate each moment. You draw from these things on shot day and think of them when you give your child that shot. You may even find it easier to imagine their skin as the fake stuff you practiced on to distract your mind from the thoughts that this is your child/baby. Most of all, you love, pray, have faith, and hope.

Pretty colors of flowers

We are blessed to be surrounded in prayer and thoughts by our family, friends, church family, sports family and more. Thank you for joining us in this journey. Praise God for his unending love for us all.