Thankfully, it worked and Phoebe was so happy and even though her happiness was fleeting, it was worth it to see her smile. She smiled and she hugged Panda so tight.
To continue this happiness, we decided to take a drive to a local nursery because both girls wanted to decorate a pumpkin. Phoebe has zero immunity, so we are really limited as to what we can do. We can decorate pumpkins and be outside in the fresh air, so off we went. Once there, Phoebe asked if we could also pick up some bamboo at the grocery store for her panda. I told her that the grocery store doesn't sell bamboo. This made her even angrier than not having her big panda did. She cried and screamed and cried some more and so, in desperation, we told her that we would look in the grocery store to make sure. We just wanted a few more minutes of happy. When we arrived at the grocery store and Jon went to run in, Phoebe lost it. She started screaming that she wanted to sit in the cart with her panda. "I just want to sit in the cart", she said. She can't sit in the cart or go in the store because she has no immune system right now, and risking her catching something is not something we ever want to do, so Jon ran in and I sat in the car with my screaming children. By this time, Mae was also upset.
The grocery store in Memphis doesn't sell bamboo. To this, Phoebe continued screaming. "Panda needs bamboo!! Panda eats bamboo!!", so in desperation, we drove back to the zoo (or the neighbourhood around it) and Jon grabbed some that was growing wild at the side of the road. Who knew that bamboo grows wild in Memphis? Jon does. Phoebe and Mae were happy. Panda was happy and the peace and quiet lasted about 5 minutes.
This is what is devastating about steroids - they change normally happy, loving and calm children into very different people. They steal their innocence. It makes me crazy to think that this is an "acceptable" form of treatment for children. Steroids cause Phoebe to scream, shout, cry, growl, rage. They turn our very happy girl into a depressed, sad, and quiet child. They cause her face and belly to swell, making her very uncomfortable. They upset her stomach. They cause her to say hateful and horrible things that she would not usually say. Things that we tell her are not kind, or nice, or acceptable. Then when they have run their course, they cause her to suffer withdrawl symptoms. And the short term side effects are only the beginning.
We do this, over and over again, with the hope that it is what Phoebe needs. It is madness.
A bright side to this, is that in the past, Phoebe has responded miraculously well to steroids. We hope for continued miracles and continued response.
Phoebe has one more day of steroids and then we have a three day break. Last week, this break did not bring us back joyful Phoebe. There were glimpses, but in all honestly, she has been miserable. This week, we hope for relief and peace for our girl. We hope for relief and peace and a cure for sweet Phoebe.
She deserves better than this.
I know that lately, this blog has been quite heavy, hard to read, and sad. I can tell you that it is harder to write and even more so to live than it is to read and I long to write a joyful post. This our reality. I appreciate so much those of you who continue to read, share, pray and think of Phoebe. This means so much to us. We can feel the love and it helps us through.
There is a light at the end of this dark tunnel and if anyone can find it, it is Phoebe Rose.
Panda accompanied us on all of our walks today - riding with Phoebe in her tiny umbrella stroller, or when she needed the space, he perched up on top. She has requested that he ride with her in one of the St.Jude wagons tomorrow, "so he'll be more comfortable".