We decided that New Orleans and the beach were too much to squeeze into one quick trip, so we chose the beach.
We made the right decision because going to the beach and letting Mae and Phoebe play in the sand and the water was the very best thing we could have done. It was therapeutic for them, and it was clear that they too needed some rest and relaxation.
Phoebe knows that she can't swim because, as she will tell you, she has "tubies" or a central line that comes out of her chest. She has had this line, or one of 10 different ones for most of her life. I was emotional explaining to her that we needed to be careful and keep her belly and chest dry, knowing that she would miss out on a big part of our day at the beach, but she was okay with it and was happy to just splash her feet and play in the sand. More than happy, she was excited and joyful. Ecstatic. It was a beautiful site but I couldn't help but feel longing for a day without tubes and worry.
This trip has meant so much to us. In our world, which does include central lines, hospital visits, medications, an often suppressed immune system, and leukemia, a trip to the ocean is not usually in the cards. We opted out of many things during Phoebe's time away from the hospital when she was post transplant and at home because we thought it could wait. Camping, the beach, trips; they all could wait. We worried about Phoebe's health and exposure to germs. We threw caution to the wind this weekend (or as much as we are able to with Phoebe) and embraced life and this opportunity. Tired of waiting and worried that life may not offer us another chance. It was worth it to watch Mae and Phoebe run to the beach. To hear shouts of joy. To see Mae swim and laugh and just be happy. To see them be kids, play in the sand, free from worry and a busy hospital schedule.
Phoebe marched towards the sand on our first morning proclaiming "I like it here", her first steps in the sand came with shouts of "woooohoooo!", she stepped in the ocean like it was something she has always dreamt of doing, and she screamed when it was time to go.
She sat down and built her first sand castles, dug holes, ran to and from the shore with her bucket collecting water for her oceanside masterpiece. She found shells. She dipped her feet in the ocean for the first time. Together with Mae, she played to her heart's content.
She fully embraced the local cuisine, trying fresh fish, crab legs and fresh whole shrimp (after her Daddy happily shelled them). As an aside, Jon and Phoebe are kindred spirits when it comes to food. All of this was done and food was eaten with so much enthusiasm and zest for life, I was between tears and laughter just watching her.
More than anything, however, this trip has left me with an intense longing for more. More trips, more ocean, more time, more sandcastles, more sandy feet, more of these beautiful moments.
Right now, with the uncertainty that fills our everyday, this is the best thing that I can hope for.
I would give anything to be able to know with certainty that Phoebe will survive, to live without this incredible fear and worry, but infant leukemia has not afforded us the peace or comfort or assurance of anything more than moments right now. We are weary, but refuse to give up our hope. Our fierce hope in mighty Phoebe's ability to beat this.
I believe and I hope that we will have a lifetime of moments, but right now, cloaked in uncertainty, I will live one moment, one trip to the beach, one birthday, one blood test at a time.
On Tuesday Phoebe will have a bone marrow aspiration. The results of this test are very important. We have been close to the end of this road for some time now. We have literally been grasping at straws in regards to treatment for much of this journey. Certain that we just needed to find THE right treatment, the right drug. The right answer to save Phoebe. Now we have tried many things and our options are running out. We need to hear good news. We need this transplant to still be the right treatment and the right answer for Phoebe.
Please keep Phoebe in your thoughts and prayers.