A series of calamities

What a whirlwind it has been these past two weeks! As mentioned earlier, we received news of her cancer spreading and the need to find something more systemic that could help her. The following few days was spent having some long and tough conversations with friends and family about her journey. By the end of that week, she had symptoms of a UTI that was causing her a lot of pain.

Monday early morning rolled around and we knew she had to get some serious help. We went to the hospital and learned that her UTI was very bad. The antibiotics were switched and it seemed like we were off to a road to recovery. Unfortunately, that wasn’t the case. Two days later, we decided to head back to the hospital, the same local hospital that we had just visited. This experience was horrible to say the least. Instead of trying to treat her pain, they kind of shrugged and said, “have you seen her scans?”

Two days this happened while her pain levels continued to increase until a neighbor was able to connect me to an amazing person connected to the hospital. By the afternoon, we had real conversations about how to manage her pain and eventually we left the hospital on Friday afternoon. Even though we left, we knew things were still not right. Her pain levels were unmanageable, but our thoughts were to get the heck out of there and get her to a pain management clinic.

This last weekend was supposed to be a joyous one. We had family coming from out of town to help celebrate Maggie’s birthday. We had bumped up her birthday party to last weekend since Amanda knew we might need to fly to different places for treatment options. Not only did we have Maggie’s party to prepare for in a short time, but Saturday the kids’ school had an event called the “Spring Fling” where the kids performed songs and had a carnival-like games. Amanda was able to watch the kids sing, but was terribly lethargic and in pain. Here are some of the happy moments for the kids:

This kids had a great time and we rallied around Amanda to try to encourage her as much as possible.

The day of Maggie’s party, Amanda’s condition was slipping even further. She loves being part of a birthday party, so we were trying so hard to let her be part of it. However, as the day wore on, Amanda was getting worse. Incoherent, couldn’t keep her eyes open, and overall just scary to see. We thought it was maybe a side effect of all of the heavy narcotics the hospital had prescribed, and after talking with some palliative care experts realized might be too much for someone not used to narcotics and so small.

It broke my heart to know that even though she was there in body, she had missed Maggie’s birthday party, one of her most cherished things to do as a mother. I just hope we were able to shelter Maggie from the majority of the situation and she had a great time surrounded by her friends and family. Here are some pictures from the party:

As soon as the birthday party was over, I took her to MUSC in Charleston, where we had done all of her cancer treatments. Within seconds of getting into the ER, they identified the problem. She had low sodium levels. Dangerously low. Sodium levels are kind of like body temperature. There’s a range and it stays pretty consistent. For sodium, it’s between 135-140. Drop below 125, and boy you should get to a hospital for help. Drop below 115, and you’re basically in a critical condition at risk of strokes and seizures. Amanda’s sodium level had dropped to 106.

They took her to the ICU, where we are still at this morning. With sodium, you have to be careful raising levels, for it can cause a chemical imbalance that can cause brain damage. Ugh. So they have been increasing her levels by about 8 points per day. From the first day of treatment, she went from a constant pain level of 10 to 0. She was also able to communicate again, which she has stopped being able to do that Sunday afternoon. Yesterday took longer for the sodium levels to increase, and we had a bit of an overly dramatic nurse who complicated the journey, but we eventually was able to get on track. By yesterday evening, she has stood up on her own and went to the bathroom…a small feat, but still amazing to see after how she was.

Today, I have high hopes that she’s going to be turning things around for the better and that we might be able to transition out of the ICU into a normal hospital room. Please keep praying for her and that we might get a word of hope from MD Anderson and the Mayo Clinic.