This was early March 2012, pre-chest tubes, pre-transplant, about a year and a bit into treatment. Phoenix has had her feeding tube in for a couple months at this point. It was a hard decision for us to have to put in a tube, but it needed to be done. This is a common tool for cancer patients because of their lack of appetite. We gave her nutrients through the tube and anything she ate was a bonus. As well, she had to take meds orally twice a day and she was sick of them because they tasted disgusting. We “sold” her on it by telling her she wouldn’t have to drink the yucky medicine anymore, so she was all over it.
The way these tubes are inserted is through the nose and down into her stomach. It would make her gag and vomit for a few minutes as the tube passed down her throat….yes, it was so hard to watch. Each time, we just asked the nurses to try to get it over with as soon as possible because there was no easy way. Phoenix had to endure about 2 insertions up to this point. So we tried very hard to make sure they wouldn’t come out unnecessarily.
On this day her tube came out by accident. This is an uncomfortable process too. It can come out accidentally by vomiting due to nausea, which likely was the case here. Unfortunately, it happened. The positive thing is that it happened after her morning meds so we didn’t have to think about next steps until 8 that evening. At this point, she was eating on her own alright and there were only meds twice a day. I thought maybe we’d get away with not having to put the tube back in. I crossed my fingers**
That was a wonderful day. We played outside on the roof of the hospital. She biked around the oncology ward in her tricycle and biked outside. We played in the playhouse, blew some bubbles and spent some quality time with the grandparents. I’ll never forget it. She felt really good so we were all in high spirits.
That evening we asked her what she wanted to do. Our philosophy with Phoenix is that she is her own person capable of making her own decisions, with our guidance of course. We also wanted her to feel she had some power over her life in the midst of all the treatment she had to endure. So we asked and she opted to have the feeding tube put back in. I was like, “Whaaaa?!? Really? Are you sure? You only have to take 2 meds.” But she insisted. Oh boy. Thats how much she hated taking those meds.
As the nurse got ready to insert the tube; Phoenix held my hand on one side and her papa’s on the other. She braced herself and the nurse started the insertion. She immediately started gagging and my heart sank. The nurse stopped. “You don’t have to do this Nenix! You don’t have that many meds anymore! You can eat the meds, right? You don’t have to do this! ” I said. But still she chose the tube. Straight faced, without complaint. My warrior child. She gagged for about 10 minutes and it was done. That was the last tube she ever had.
Every time I think of this story, it pulls me out of my despair. Each time I feel like this pain is too much, I remember how this little girl with the beautiful smile endured more in 5 years than I’ve ever had to endure.
I wanted to share this story of Phoenix’s bravery and courage so it may help others going through struggles of their own, myself included. She is a shining example of strength, endurance and hope in the most impossible situations. She taught me that we must always keep fighting. That we can not waste our lives on trivial matters. That nothing is more difficult than this. That we must always be grateful for every breath we take and for the loved ones in our lives.
You are my hero Phoenix Ryland.
Some pictures from that day..