Some of you reading might think that this isn't a big deal, and in the big and devastating picture that includes relapsed cancer and all Phoebe has been through, it's probably not, but to Phoebe, it is huge. It is the biggest deal there is.
We have tried to explain to Phoebe that the tube is necessary to help her regain strength, that she needs it because she hasn't been eating. To this, she said, "I'll eat. Give me my pretzels". We then told her that she needs to gain more weight, that it is dangerous and not healthy to be so thin. To this, she said, "I'll go and get weighed again. Please let me weigh myself again to see if I'm okay. I'll show you". We tried to tell her that the feeding tube will help her to get better, that it will give her energy. "I am better", she said. We said it will help her grow big and strong without Mummy and Daddy always bothering her to eat, "I am big and I will eat, I promise", she said. Then, as it became clear that the tube was going to happen, she began to scream - "no tubie, no tubie, I will not get a tubie - I'll just pull it out!".
After the nurses inserted the tube, they had to check for placement. This requires them to listen to Phoebe's stomach as air is pushed in via a syringe. To this, Phoebe cried "stop touching me, I promise I won't pull it out".
By this time, I was in tears and like Phoebe, I felt completely defeated.
Phoebe has lost 7 pounds since we arrived at St.Jude and she is now at the same weight she was at 2 years old. It is just not healthy or conducive to healing and it is not okay to watch her get smaller and smaller. The feeding tube is necessary, but for Phoebe's sake, I just wish there was some other way.
The pleas and cries of "no tubie", and "I promise I'll eat" will probably haunt me forever. Looking up from holding Phoebe as the nurses inserted the tube to see Jon watching and fighting back tears will also be an image I won't soon forget.
I hope Phoebe forgives us. Tonight as I put her to bed, she finally asked me for some milk - she had been refusing to eat and drink since the tube insertion. She listened without tears when we talked about it some more, but as she fell asleep, I heard her mumbling quietly, "I didn't want this tubie". She is the most beautiful, courageous and stubborn person I know and I think that her determination combined with forgiveness and love carries her through these struggles. It certainly carries us through.
As for blood work, it looks surprisingly great - or not so surprising given that this is Phoebe. Many things are within normal range and results from a peripheral blood chimerism are 99%. The doctors are happy with this, and so, we are too.
Before we left the hospital, we spoke with the nutritionist about our options for "feeds". Being no strangers to the feeding tube, we were already a bit wary of the options. The one most commonly offered lists sugar, corn syrup, soy, and canola oil as its first ingredients. We opted to look into other options and are excited to also try to make our own healthy, nutritious, made with real food, tube feeds. More on that later, perhaps.
There are plans to repeat bone marrow tests on the 23rd with a chimerism included and until then I will continue to hope, pray, and expect a miracle.
Please send some love sweet Phoebe's way.