This was a hard, terrible day.
After breakfast with mom and the kids at home, and getting the kids off to school, we headed back to the hospital to relieve Jeanne. I brought Sebastian up to the room with me and he laid on the bed, giving Jenney a good long hug, snuggling while she cried. He asked some questions about all of the wires and tubes, the beeping machines. We tried to explain as best as we could, but how much does a 3-almost-4 year old understand of such things? Time will tell I suppose.
Jeanne left with Bash, and my mom drove them home.
Around 10am the Dr came in again to go over the follow-up MRI with me. He said they had done some tests on the tumor and had reversed their decision; it was malignant. Again I gripped the bed, gritting my teeth as he went on to say with difficulty that it was melanoma. This is strange as melanoma is usually a skin cancer. He was still consulting with the head oncologist of the hospital, and they were doing some more tests to determine the best course of action.
For now, he said we need to focus on recovery from the surgery.
There is time to think about the rest and to come up with a plan, but no one is resting on their laurels about it. He mentioned that it doesn’t seem to be anywhere else, but they wanted to be sure and so were consulting with the obstetrician to determine if it would be safe to get some increased resolution imagery with a CT scan, and/or more contrast with MRI.
We were devastated. We are devastated.
I pleaded with the Dr through my tears, asking if he could give us any hope. He reiterated some of the above, then mentioned that they have a team of many people working on this, some of which are head of departments at this hospital and they’re consulting with colleagues from other hospitals and universities. It’s a high profile case, and is getting a lot of attention. He gave us some small assurance that there was about 80% success with similar cases in containing, but not curing.
A physical therapist came to the room. He was very nice, and had a great sense of humor, making us laugh as he helped Jenney get out of bed, brush her teeth at the sink, and then take a stroll around the nursing station. She did well; wobbly, knee buckled at one point, but she did very well considering it was only 2 days after major brain surgery. Her vision was doubled, and he gave us some assurance that we should be able to correct that, but for now, it’s stressful and concerning.
A speech therapist came after that to do an assessment. Jenney’s speech is good in that she can pronounce words very well, and she can respond to questions very well. Sometimes when she has a question, she can start it but not finish it. “Do you…” “Can you…” and other times it comes right out. Most images she can recognize, but sometimes you have to give her a first letter suggestion. It’s improving in small increments as we practice, and the therapist gave us some tools to use. One of the main takeaways was that if you get frustrated, it’s time to stop. Most of the time Jenney thinks it’s funny when she can’t think of a word, and laughs. It’s good to hear her laugh.
Around 11:40 Jeanne checked in to see how Jenney’s morning was going. Jenney was asleep so I took a walk, and called her. I said her morning was going pretty well, went over the better highlights, and then asked her if she was sitting down. Once she was sitting, I gave her the news. We cried, she asked questions, only some of which I had answers to, and cried some more. She said she’d take care of telling Jenney’s brothers. My mom was in the room with her so knew by Jeanne’s reactions. We hung up, and she texted a little bit later that she was on her way in.
Jeanne stayed with us the rest of the afternoon. Around 5:30pm my mom arrived with the kids and food. They ate in the cafeteria while I took each kid up to see Jenney, one at a time so as not to overwhelm her, cuz those three can certainly be overwhelming all at once on a good day. Don’t get me wrong they’re great kids, but all the questions and talking over one another can be hard to process, even without brain surgery. Viola was first, then Vincent, and then mom brought up Sebastian while I ate with the other two in the cafeteria. We had lasagna from a generous friend, and it was delicious.
I walked the family to the van after dinner, then went to spend the night beside Jenney in the ICU. Helped her eat her dinner, and tried to get some sleep amongst the beeps and boops and vampires drawing blood in the night.