update from mom

Hello everyone! Joanna agreed I could do a guest post tonight 🙂

We’re thankful to share that her tumor removal surgery yesterday went great! Having a great team was such a blessing. Her surgeon has lots of experience: with cancer, with kids, with ENT things, and probably with tons of other things that I have no idea about. He was just the right guy to be working on our girl. It was hard waiting, wondering if Surgery Plan A was happening or if they’d had to change to one of the others we discussed. What a relief to hear that Plan A worked. I think I may have clapped a little as I cried with the good news.

The covid restrictions changed right at the beginning of our time of appointments at the hospital and patients are allowed 2 adults with them, instead of the 1 that previously been permitted. So, both Morgan and I were able to be there during surgery and also spend the night with her in her room. We tend to take turns being the one who knows what’s going on, so having her whole team was a good thing for our girl.

In case you’re just catching up with us, results are in from the tests that have been done so far, and the diagnosis is Stage 1 rhabdomyosarcoma. After filling her in on the results of her MRI and biopsy and giving her the diagnosis, her doctor told Joanna to remember “this is a curable cancer.”

This surgery being done is a big step in her treatment plan, but she has a long way to go yet. Over the next 2 weeks she’ll have some additional tests and her chemotherapy and radiation plan will be worked out. Then, we’ll start weekly visits for chemo to the Jimmy Everest Center at the Oklahoma Children’s Hospital here in Oklahoma City. What a blessing to have such a great treatment option right here at home! Though we don’t yet know how her body will respond to the chemo, she has been told that it kills fast growing cells, and our hair cells are fast growing cells. So, it’s likely that within the first couple weeks of chemo she’ll experience that.

She came home with some medicine that’s a mouthwash to prevent infection. She hates it. It’s so hard to encourage her to swish this stuff that I can’t stand the smell of either. She doesn’t want to do it. She’s tired and it’s gross. I wish she didn’t have to do it. Parts like this are hard. Knowing more medicine that seems worse to her than the illness is coming is hard.

The last month and half has been a whirlwind -from finding the lump to visiting various doctors, to tests, to getting results, and talking about treatment plans. None of us 3 have a great answer to “how are you doing?” It depends on the moment. There’s been so much to do that it’s been difficult to find time to process much. We’re grateful that Joanna is feeling well -so far the pain she’s experienced has been from treatment, not from the cancer.

At the moment our prayer is that our insurance will grant an exception for Joanna’s treatment team and location to be treated as in-network providers rather than out-of-network (which they’re currently set to switch to being at the end of next month). The answer to that question seems to be one that will make a huge financial difference for us.

We are so thankful for our church family who have stepped in to provide meals, help with lawn care, and run random errands. It’s so helpful to have people able and willing to help with those things as we’re trying to stay on top of figuring out what’s next for our girl.

Joanna has been really encouraged by knowing that people who know her, or her parents, or grandparents, or uncles, or others who love her are concerned for her. Reading comments people leave on her blog posts and opening things that come in the mail has been bringing smiles to her face.

She was disappointed that she didn’t get a visit from a therapy dog in the hospital. She knows that they exist. People tell her how cool they are. She saw one in the gift shop. But, in spite of all the hours we’ve already spent there, her schedule hasn’t lined up with theirs and she’s missed out. So, today when she was expressing frustration at being in the hospital I reached out to a friend who I knew had great dogs -not realizing that they are certified, I just knew they were the best-behaved ones I’d been around. I can’t make the cancer go away, I can’t fix the pain or frustration she’s feeling, but I can contact a friend and get Joanna a bit of time with something that’s special for her. In spite of being tired from the hospital overnight she wanted to go over there today. We did. She loved it! And, I benefitted from getting to share a bit with my friend.

Then when we got a home from that a friend texting asking if we needed supper tonight. You know what? We did. It was such a relief to let Joanna pick a place and text preferences to the friend, and a bit later dinner arrived.

Having taken people meals before, or picked up things from the store for someone when it’s hard for them to get out, I know that it seems like a small thing. But, for us, these last few weeks -each meal, grocery run, offer of help has been so appreciated.

So, I know this is long and rambling -and quite possibly Joanna will decline future requests from me to update -but I wanted to share a bit of what’s happened so far. Thank you to each of you who has encouraged her (and us) in some way. We appreciate you more than we can say.