Survivor

We found a survivor.

Her name is Hailey. She was two years old when diagnosed. She showed the same symptoms and had a tumor on the same (left) adrenal gland. She had it removed and went through six rounds of chemo and had a couple of surgeries to remove the numerous mets in her lungs. My heart is soaring thinking about her. Her odds were so low and she is a healthy, happy, cancer-free six year old.

We need these happy stories more than ever these days. As we approach the next round of chemo, we have to hold hope close to our hearts and pray for some improvement in her condition. We've had a couple of setbacks this week; nothing major but enough to rattle our confidence. We were preparing to be discharged on Friday, when the results from her heart echo showed a clot in one of her valves. It was from her central line and moved into her heart. It's not causing any problems right now, but it does have the potential to break off and move to her lungs, which is quite dangerous. They put her on an anti-coagulant and kept her in hospital for monitoring. It's so hard not to be disappointed. Kris is taking it especially hard and has gotten himself sick over it. Well, maybe not, but either way he has come down with a cold and can't be in the hospital. Kind of a bummer as it is the long weekend and he could've had a whole extra day here.

Another setback is Eleanor's weight. She has been steadily dropping weight since she came, which is good, as she was technically obese, but now she has fallen off her percentile for height and weight. She is now being supplemented with overnight feeds and I can't keep up to her needs and they won't provide me with donor milk because she can tolerate formula and the need is greater elsewhere. I am gutted about this. I am pumping as much as I can so that they can do half breastmilk-half formula, but I still feel like such failure. It was my milk (plus the steroids) that got her so fat in the first place! Oh well. The important thing is that she eats/gets nourishment from somewhere.

These are just minor setbacks, really nothing to be worried about, but coupled with the unknown makes for an antsy mummy. Provided this coming round goes well and her scans come back showing improvement, we can bank on another six rounds of chemo. That means another nine months in hospital. Holy shit. We are approaching our three month mark, and I am already starting to lose my mind! But if that is what it takes to get my baby healthy, then I'm fine with it. Sometimes it feels like we have so many obstacles in the way, and time moves at such weird intervals, I just don't know if I'm coming or going. It doesn't help that we are stuck inside on the most beautiful weekend of the summer! Bring on the cold and the rain; at least then I won't feel like I am missing out on anything!