So, I wrote this post on Sunday afternoon and it was originally titled “Weekend Recap”. We had a great couple of weekends which included a trip to Lost Pines, and then an awesome weekend which I wrote about in the below post while Phoenix was napping….
Friday started out great with a day at home for the kids and I, while Ben was at work. We had friends come over that we haven’t seen in a while, and that is always fun. We planned on having some friends over for dinner, but plans changed at the last minute, so we did our usual “pizza and movie night” instead.
Saturday, Shiloh had her first play date over at a friend’s house. She was SO excited to be able to play with her friend all day, and couldn’t stop talking about it once she got home- so cute. While Shiloh was with her friend, Phoenix and I ran some errands together in Austin and then we spent the rest of the day at home, just playing and relaxing together. Then, Ben and I watched Batman v. Superman after the kids went to bed.
Sunday, we had an event to go to at the great Austin children’s museum, Thinkery. My sister got us a family membership, and it is so nice to be able to there whenever we have some free time, and also to take advantage of their “member’s only” events. Sunday morning, they had early admission for members, and also breakfast tacos and drinks from Hat Creek Burger Company, so nice! I’ve mentioned this before but with Phoenix’s treatment, he has not been able to go to places like this, or be around other children for the last 6 months. We were just given permission from his oncology team for him to go out at his last doctor’s appointment. It has been SO nice to take him out and let him have some fun before his next round of treatment starts in a couple weeks.
After the museum, we played for a minute at the park across the street, and then got some cupcakes at the adorable Bribery Bakery. We had a great time, and we are just so thankful that we are able to enjoy this kind of weekend together, and that Phoenix is feeling well enough to enjoy it, also!
…And then Phoenix woke up from his nap screaming in pain, and couldn’t walk on his legs. The pain and inability to walk continued throughout Sunday evening and on into Monday, so we took him to our oncology clinic at Dell Children’s first thing in the morning. They decided to do an X-ray of his legs, but it came out clear. They sent us home with prescription pain medicine and told us to closely monitor his pain and movement, and they would see us Thursday for his weekly appointment. We tried to manage his pain at home, but it continued to get worse, so they told us to come back in today (Wednesday) for more testing. And that is where we are now- Phoenix is under anesthesia as I type, getting an MRI of his body (from his hips down) and a biopsy of some lesions on his ankle to try to get us some answers.
The reason we are so panicked about pain in his legs, is because this pain (along with a high fever) is where this whole Neuroblastoma diagnoses started back in January. The way he is acting feels remarkably similar to that first week battling cancer, and I can’t get it out of my head. I am terrified that the tests they are doing right now are going to say that the Neuroblastoma is back. On the other hand, the results from Phoenix’s scans right before going in for his stem cell transplant were amazing- they did not show any Neuroblastoma left in his body, so we have every reason to hope for the best from the tests they are doing today, but I am still panicked.
Some of the hardest things about this childhood cancer journey, are all of the unknowns and all of the ups and downs. We get used to one thing, such as going in every 3 weeks for chemo, and then it changes. We start to get used to the idea of being able to breathe a little, such as taking a small family vacation, or going to the children’s museum, and then we end up in the hospital.
I continue to be amazed at Phoenix’s strong and happy spirit- he is determined to feel good and be happy, and that is what is going to get him through all of this. I am trying to keep that positivity in mind as I sit here and wait for him to wake up from anesthesia with some (good) results from his MRI…