The past week has been a whirlwind of doctors, hospital, phone calls and a lot to take in and process. I still can’t believe how quickly everything has moved. Hannah’s surgery was just on Tuesday and now here, on Saturday night, everything has changed.
She did so amazingly with this surgery. We knew that she did NOT want to be there but we could also tell that she knew how important it was and that she had to cooperate. She still wasn’t very talkative with the doctors or nurses, but at least she did everything they asked of her. And she was so brave and strong… I’m glad, because she’s going to need that going forward.
The surgery involved two procedures – the first was an interventional radiology procedure that used the CT scanner to place two wires leading in to the spot where the nodule was, to lead the surgeon to the correct location. It’s not an exact science – and he couldn’t tell even after taking the samples whether or not he had the nodule. He was hopeful and there really wasn’t anything else they could have done to improve the chances any further – it’s just not an easy thing to locate. Thankfully pathology tests revealed that he did in fact get the whole thing, so that was very good news.
At the end of surgery, Hannah had two tiny incisions on her side and upper back – and one larger one where the scope had been inserted during surgery and the chest tube afterward. She came up from recovery connected with multiple wires and tubes, which was difficult to see, but she tolerated everything so well. Only a few times did she complain of pain – the nurses were very good about being on top of pain management. She spent most of Tuesday evening sleeping and then just wanted to play on her phone for most of Wednesday. They did two x-rays on Wednesday (one in the late morning and one in late afternoon) to see how her lung was expanding and to check for air leaks. She did so well that after the first x-ray they switched the chest tube over from wall suction to water seal, and after the second one they removed the tube entirely – and sent us home about an hour later. The nurses were shocked at how quickly she was out of there – it’s almost unheard of with a chest tube.
Like I said, she’s a trooper and a fighter.
Thursday and Friday were hard – we got the pathology results Thursday morning, that this was indeed a recurrence of the hemangiopericytoma that was in her knee in 2013. And then Friday morning after tumor board met, we got the news that Hannah will be undergoing chemotherapy, starting in a couple of weeks. We don’t have full details yet on what that will entail, but the entire regimen will last about 6 months with multiple rounds of chemo. She’ll be hospitalized for each round for several days and then home in between.
This was obviously not what we were hoping to hear, and telling Hannah was one of the hardest things that Ron and I have ever had to do. She has been growing out her hair for the past few years, so hearing that she will lose it was devastating. I will knit her as many hats as she wants, but right now she doesn’t want to think or talk about any of it. We’re giving her time to process before talking over wig/hat options.
We’ve had a huge amount of support from family and friends, as well as our elementary school and her teachers. We are so blessed to have them all in our lives. Hannah’s doctors are very optimistic that with the chemotherapy treatment, there will be minimal chance of further recurrence – the infantile type of hemangiopericytoma (which is what she has, even though she is not an infant), while rare, has been seen to be very responsive to chemotherapy so they are tailoring her regimen to give her the very best chance of living a normal and healthy life after this is over.
The next couple of weeks will be hard, but we are grateful that she will get to participate in the school-wide spelling bee and her first band concert next week – and that we can celebrate Becca’s 9th birthday together at home before Hannah’s first chemotherapy admission on the 22nd.
I know she’ll get through this – all of us who love and care about her will get her through it. Even though it breaks my heart that it’s necessary to do so. This was nowhere in our plans for 2015, but it’s what the New Year has brought us, so we will make do.
Thank you to Jenn Brown for use of the #GoGold graphic!