Sunday, January 3, 2016

To a New Year

Like soldiers returning home from war we watched each other, unsure of how to react to the holidays. How do you celebrate Christmas with out doctor appointments, MRIs and chemo vomit? I will be honest, it was weird and I made it up as I went along! We established our own family traditions. One of the things I love to do is limit gifts from Mom and Dad to four categories, 1. Something you want, 2. Something you need, 3. Something to give, 4. Something to read. The girls had so much fun opening presents under the tree, they all had a hard time taking turns!

Although we were without family on the holiday we had fun doing our own thing. We opened
presents, got dressed for church, came home and cooked a fancy meal of smoked turkey, and played board games. The day seemed to come and go so fast. I am just so thankful to have a "normal" Christmas. I hope they do not remember the last two years when they are grown up.

The rest of the holiday season we have been busy doing our end of the year declutter getting the house ready for Spring and the flower beds ready for seeds. Hopefully there will be another crop of veggies and chicks for us to enjoy this year.

At the end of each year I reflect on what happened and what I would like to do differently in the next year. I think about everything from how to change our homeschool lessons to how to organize my pantry and all the way to fitness goals. This year I plan to do more field trips now that the girl's health is more stable. Emma has decided that running is super cool and wants to do a race with me so I am searching for kid runs she can do with me and have her start her own race medal wall of inspiration. She certainly has the energy and stamina to be a runner! I have four half marathons between January and June that I will be running then summer is a break to have my sister's wedding!

As far as the girls health this year goes we have a few big things coming up. Right before Valentines Day Emma will have another MRI and while she is under she will have a minor eye surgery on her blind eye. It is not tracking well with her seeing eye so this surgery will help her appear more "normal". The effects only last so long so she will have it redone in about two years. This time we are ordering a full body MRI. For the last month or so she has been complaining of leg pain. It is to the point where she limps around and falls to the floor crying. I am beginning to suspect that she might have some tumor growth in her leg. It is common for NF patients to grow tumors in their legs and arms along the nerve pathways. I pray that it is nothing serious and if it is that we can remove it surgically. Sadly it is the leg she has already had a surgery on as an infant. She will have some awesome war wound stories for that leg when she is older!

CHOC inpatient last New Year's
Gracie is doing fine, her last MRI was stable and she goes for her next one in about a month unless they bump it back. We are still watching the spot near her brain stem and praying she stays out of the OR. We are still searching for a physical therapist who is an hour or less away for PT. If anyone knows of a pediatric PT or one who is willing to see a child in the Central Valley please contact us, I am getting no where!

This New Year I must admit I was a little afraid. Last year we were hit SO hard that I felt frightened to plan or celebrate at all. Thank God we made it through with minimal issues. It all feels like yesterday we were praying she would make it out of CHOC but she was so very sick.

As we move into the New Year please continue to pray for the girls. The horrible thing about NF related brain tumors and cancer is you are never considered NED (no evidence of disease), you fight your entire life to keep the tumors from killing you. You have good years and bad years and fear in-between. I am trying my best not to live in fear of the next wave of bad and enjoy the normalcy we have at the moment. I must admit, however, I fear for our future and pray that a cure for NF is found soon.