Tuesday, April 10, 2018

Exciting Things in Our Future

Today had a few big milestones as we head into a season of milestones. 

First, we registered Tillery for Kindergarten! I really did mean to follow up and write an update after her neuro-psych testing but it seemed like testing results and decisions kept dragging out. Upon discussions with the psychologist from Cincinnati and a crew here in Knox County, we are moving forward with Kindergarten with the thought that if the first year is tough or she lags behind, we will have her repeat it, if needed. According to the testing, Tillery has the cognitive ability to learn but she does have some obstacles that many of her peers won't have so we are working on a 504/IEP plan to have in place when she starts Kindergarten to make sure she has all she needs to be successful.

The second milestone of the day was a bittersweet (temporary) end to gymnastics. Tillery has made huge strides with physical skills and confidence over the past year in gymnastics and we are so proud of her! This wasn't goodbye forever to gymnastics, we are just taking a break because we have a busy season coming up in our lives and we will rarely be able to make it to the gym. 

All that said, let me fill you in on what the Phillips family has coming up over the next few months! We will be continuing to celebrate how far Tillery (and our family) has come and will continue our fighting back against the cancer that tried to knock us down!

Next week, we go back to Cincinnati for our quarterly appointments and scans. If the tumor is stable, we hit a big milestone as we will step back to doing these appointments only 3 times a year. It's scary to add more time between these appointments because the reassurance that all is still well is really good for us mentally. But the extra time between appointments means the team is confident in her healing and in our ability to spot trouble if it were to arise. 

After our trip to Cincinnati, we head to Washington DC, where we will be joining the Alliance for Childhood Cancer for Action Days at the Capitol. We have been talking for years about the STAR Act and asking you to call your local Congress representatives and ask for their support. Now, we are actually going directly to them, face-to-face! We will be sharing our family's story of living through childhood cancer and all 4 of us will have the opportunity to share...even Luke and Tillery! Not only will we be advocating for many of our friends here at home, we will also be taking their stories with us in the form of fliers of children we know across Tennessee (and a few special buddies from other states). We will be their voice as well and will be able to, for the first time, make some strides in the political side of childhood cancer research. We are beyond thrilled to have been invited to do this and cannot wait to share all about it with you when we return!

We will return from our travels and Tillery will finish out Pre-K at a school that has been so great to her. Fort Sanders is a special little school full of love and support and we will miss being a part of that community. It's been the perfect place for Tillery these past 2 years!

As Tillery wraps up school, we also have 2 big fundraisers happening in May. Go Gray Sunday will be May 6. This is the second year we are doing this event and last year we had 17 churches participate by wearing gray, sharing awareness facts of pediatric brain tumors, praying for families and children affected, and even fundraising. We look forward to continuing to grow this event annually. It's been great to share with our pediatric brain tumor community about the love of churches who are supporting them. (For more info, visit GoGraySunday.com.)

Then, May 19th will be the second annual Tillery's Hustle for Hope 5k. Last year, our inaugural event raised $10,000 for Alex's Lemonade Stand Foundation to fund pediatric brain tumor research. This year, Lighthouse Family Retreat will be the recipient of funds raised, as we give back to the organization that planned and funded our beach retreats for the past 2 years. We love what we have witnessed Lighthouse do for our family and other families we were on retreats with. We are excited to support their ministry this year financially and also with our time later this summer. (For more info or to register for the 5k, visit HustleforHope5k.com.)

The week after the 5k, Tillery will have her next surgery. Her left bone flap has been sunken since her tumor debulking surgery last March. The plan for this surgery is to push the piece of bone forward and attach it to the front of her skull to hopefully have it fuse and grow with her. This is a fairly minor surgery in Tillery's world but still involves safely covering her brain and there are always many risks involved with those surgeries. 

As Tillery is healing from surgery, we will make our annual trip to Lake Junaluska for Joe's UMC conference. In year's past, we have collected pop tabs and sold lemonade during conference but I think this year, we will take a year off from that side and just allow it to be a restful week for the kids and me. (Holston Friends, we will still gladly accept bags/boxes of tabs if you have them and if anyone wants to give us donations for our fundraising efforts, we will take those too!)

In July, we are excited to be returning to the sand with Lighthouse Family Retreat. The past 2 years, we were a "Retreat Family", paired with a "Family Partner" who takes all the stress/work out of vacationing. This year, we will be serving as a Family Partner to a Retreat Family, meaning we will be paired with a family who has a child currently in treatment. We will serve their meals, clean their condo, play with their children, and Joe and I will have an extra role as shadows to the parent group meeting time. We will be in training this year to return in the future to lead this special group time when 10-12 sets of parents come together to share their journey and help each other find rest and healing through Christ. The families share their highs and lows and it only takes a few hours into the retreat before the whole group becomes one big family. We can't wait to meet our 2018 Lighthouse family and build bonds like we have the previous years. 

Once we return from the beach, it's back to reality in a really fun, new way...Kindergarten! Tillery will be at Luke's school and he's ready to show her the ropes and help her navigate this next phase. 

As all of these things happen over the next few months, we will be sharing with you all. It's cool to have this Tillery is Loved community that has followed us through our journey. We are excited to share these highs with you, as you have carried us through many of the lows. 

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