Christa felt a little clarification or more explanation of our feelings from last night may be necessary. We were discouraged about the news of stage 3 from two stand points. One, with the fact that the tumor had come out intact without spillage, we felt that it was going to be stage 2 (probably not stage 1 considering the size). We had an expectation. Second, we wanted to avoid radiation treatments if possible.
The diagnosis of a Wilms' tumor is still good news compared to what it could have been. As our friend Shannon said the other day, it's like asking if you were going to get hit by a car, would you rather be hit by an Hummer or a Prius? The prognosis for kids with a Wilms' tumor is quite good. We're still hopeful that Chloe will live a long, normal life.
We spent at least an hour and a half this afternoon talking to Chloe's oncologist about treatment. The jist of it: she'll begin chemotherapy tomorrow morning and will continue once a week for the next ten weeks, with treatments spreading out and ending after twenty-four weeks. She'll most likely have six radiation treatments over six consecutive days, the first probably beginning a week from tomorrow.
I'm sure there are going to be many difficult things about the coming months, but for me one of the hardest may be seeing Chloe lose her hair during as a result of treatments. Everywhere I take her people comment on her hair: this morning at the gift shop, last week at the bike shop, every time we're at Meijer. This morning when the gift shop employee commented "she has such beautiful hair" I almost replied, "yeah, it's too bad she's going to lose all of it.". Thankfully, I held my tongue.
During our meeting we had discussed waiting until next week to talk to Chloe about the hair loss. However, while the oncologist was talking with her about beginning chemotherapy tomorrow and why we were doing it (in four year old language), we decided to tell her about it then. She wasn't making eye-contact and was playing with toys so we thought it was going in one ear and out the other. Yet, at dinner an hour later she told Christa that she didn't want to lose her hair because she was afraid of looking like a boy. A short while later as we took a walk she told me that she didn't want to lose her hair because she was afraid to look weird. We all thought that she wouldn't be concerned about it, now we know differently.
When we got back up to Chloe's room, her night nurse was asking if she needed Tylenol. Chloe said she did as her port was sore (pretty amazing for a four year old to say that). Her nurse said that her port used to hurt when she had Hodgkin's lymphoma four years ago when she was 20. She ended up telling Chloe that she had lost her hair and pulled out her iPhone and showed Chloe photos from her hair-shaving party when around a dozen of her friends joined her in shaving their heads. We think it really helped Chloe to talk to someone who had gone through it and had all of their hair grow back. As Christa said afterwards, that was certainly God at work.
It looks like there's a good chance that we'll be heading home sometime tomorrow. Pray for us as we figure out what our life will look like at home. It's pretty overwhelming to think about all that we'll be needing to keep track of.
We continue to be floored by the love and support that surrounds us. Yet in all honesty, it is feeling a little overwhelming to manage. As we figure out what our needs are there will be some folks who will be point people for various items. So many of you are writing these amazing messages, sharing prayers, support, stories. We so value each and every one of them, but we're getting so many that we simply can't respond to them, even those we want to. Thanks for all of the words that are blessing our crazy days.