Sunday, July 14, 2013

Home Sweet Home

We made it home from vacation yesterday afternoon and we had an AMAZING time. We got Braydens pictures taken as planned on Thursday, and while I was initially hoping for sun during the photos, I think we are just lucky we didn’t get wet! They turned out wonderfully and our photographer was really able to capture Brayden well. I wish I had taken a picture of his little girl Nora with Brayden because she loved him and has been praying for him during her nightly prayers. She even gave him a very sweet kiss on the cheek before she left. I hope to have a little girl that is as sweet and as cute as she is someday. Here are a few of my favorite photos, but you can check out the photographers favorites as well at
After getting the photos we went to go get a beach pop because Nora said the “purple worm” was the best. Beach Pops are organic popsicles that are essentially only fruit that is blended and then frozen in a mold. They were delicious and Brayden thoroughly enjoyed his purple worm. Thanks Nora!
Friday they were forecasting rain (AGAIN?!) so we decided to pack up a day early and go to New Orleans. Before we left Brayden and I went to the balcony and snapped this photo.
As I snapped this photo I told Brayden to “wave bye bye to the beach and that we would bring him back to the coast next year”. As he waved to the beach I secretly wondered if that will really happen. Will he be well enough next year to make such a long trip? And of course then the dreaded thought comes…… will he be here with us next year? There is a 40% chance he will be here with us in 5 years, but that means there is 60% chance that he won’t be. There are no statistics that reflect how much time those 60% of kids have. I am hopeful that Brayden will receive a miracle cure, but I am also a realist and I can’t ignore the statistics. As each day passes I hope for the best while also preparing for the worst hoping that will mean I won’t have regrets about how we spent whatever time we get. Up until this point in our trip I had done really well at just enjoying Brayden, not thinking about the future, and just living in the moment. I wiped the tears away, pushed the thoughts further into the back of my mind where they always live, and went back into the condo.
It was a short three hour drive, and Brayden did awesome as usual.
It was super-hot when we arrived so we decided to take a city bus tour. It was really interesting to hear about the history of the city and hurricane Katrina. Brayden slept through the city tout in paw paws lap and woke up rejuvenated.
After the tour we headed over to Bourbon Street........
Some nice girls in the tiniest bras and panties I have ever see threw Brayden some beads over the balcony, so he can say he really got his beads. It was pretty late so we headed to dinner and I was worried that Brayden would not do well, but he did awesome.
We left New Orleans around 11 Friday evening and drove all night. Brayden slept on and off until 6, and then he was done. We stopped on the other side of St Louis for breakfast around 8, and drove the rest of the way. He finally fell asleep about 90 miles from home…….
As I write this blog he is scooting all over the kitchen playing with his toys. He seems happy to be home, and I am sure his own crib felt as great as my bed felt last night. Overall we had a great trip and made some life long memories with Brayden.
We go back to clinic on Tuesday for labs so hopefully we will be in and out. Brayden’s next MRI will be on July 29th, and I find I am already anxious about what it will show.
During our trip, our condo neighbors also had a little boy named Brayden. They didn’t tell us a lot about him, but they did tell us that they he also had a terminal disease and needed a transplant maybe. We also heard about a local family with a little boy named Braden who just learned they only have a few weeks to months with him because he is developing drug induced leukemia from a prior treatment, and it is nearly impossible to treat. What I am really starting to understand is that there are children all over the world with terminal diagnoses and we know little to nothing about these diseases. It really is very angering that children are dying every day because there is so little funding for pediatric cancer research!
During out trip we also learned that the company we rented our condo form has started its own program related to pediatric oncology. They are calling it “Sunny Days”…….
At Gulf Blue Vacations we believe that there is a healing power to the turquoise waters of the Gulf of Mexico and the beautiful white sand beaches of the Gulf Coast.
Sunny Days is a not for profit organization founded by Gulf Blue Vacations to support pediatric oncology. Through Gulf Blue Vacations, Sunny Days offers a few free vacations each year to families whose fight against their child’s cancer has kept them financially from taking that much needed family vacation. The owners of Gulf Blue Vacations have personal experience with the impact that cancer can have on a family, and have founded ‘Sunny Days’ so as to offer a little sunshine to families fighting this difficult fight. We hope you have a Sunny Day staying with Gulf Blue Vacations!
It warms my heart to think about how many people are trying to help these families, but angers me that there is little to no awareness about pediatric cancers. As time has progressed I have come to admire people who have come out of a journey like ours with a not happy ending, and have turned it in to something beautiful to help raise awareness or help struggling families. Hopefully someday I will be able to do the same. I desperately hope that someday pediatric cancer awareness will be as strong as breast cancer awareness. Maybe then we will be closer to finding a cure for some of these terminal pediatric diagnoses……


  1. So glad you all got the amazing vacation that you truly deserved. I'd say you have all earned it after the last year and a half! Love you guys!
    --Mary (and Roscoe and Haleigh!)

  2. Thanks for the nice words about my photography and little girl. She is our special rainbow baby. Not sure if you know what that is, but it is the baby you have after a still birth. Almost 5 years ago today, it happened on July 31st, we had a son born to us that didn't make it through the journey into this world. His name was Noah. And although he never took a breath in this world, he affected hundreds, possibly thousands with his spirit through a blog we had been keeping titled The One Shoe Diaries. Sometimes the tough things are hard to deal with, but writing them down does help as you know. It also helps others that are going through the same things as yourselves. I admire you guys in trying to live in the moment and enjoy every second you have with Brayden. He is a special little guy. I really hope when you guys make it back here next year, you let me have the opportunity to take some more images of Brayden, and this time I want a shot of him and Nora with their purple worm beach pops!! Take care and Brayden is always in our prayers.