December was hard. Rosie Jane got the stomach flu. I had gone to a movie with some of my girlfriends and came home. Johnny was cleaning up our bed and the smell of vomit was strong. Poor Rosie Jane was sitting on a stool in our bathroom covered with throw up and looked awful. I cleaned her up while johnny tackled the room and every ten minutes this poor girl starting vomiting again. She was so good to get it into the bowl after that. We tried zofran. She would just throw it up. After an hour, we knew she had to go in. We called my mom and she came over while we took her in. She was getting so weak and I held the bowl while she kept throwing up, mostly dry heaving at this point. 

We got to choc and they didn’t have a room available. We stayed outside where she kept throwing up. We finally got in, got her accessed and started zofran and fluids. She was dehydrated. We were able to go home but two days later she started throwing up again. Luckily, we were able to go into outpatient every weekday to get fluids for her. I debated on keeping her needle in but she hates the bandage. By the third day, her skin was so bruised from being accessed we skipped a day of fluids. It had been a few days since she threw up and they got me dissolveable zofran pills. I’m not sure why I didn’t have those to begin with- game changer. 

A few days later both Reed and I started throwing up. We locked ourselves in our room to hopefully stay clear of Rosie in case it was something different. We did steal her zofran- it was a huge gift. We did puzzles, started Star Wars from the beginning and then our power went out. A cable blew underneath the street and oh boy, we started losing our minds in that room after being there for two days. 

We went to bed and luckily the power came back on while we were sleeping because Rosie started throwing up again and reed did too an hour later. 😭 I was grateful we could see where we had to clean up. 😂

We finally all recovered but decided to keep Rosie home the rest of December because we didn’t want her to catch anything else and end up in the hospital. 

We had a wonderful Christmas and the kids were great. The kids were getting some surfing in and Rosie was doing pretty well on her 25% dose. 

She had her next big infusion in January where they brought her pill dose back up to 50%.   On the Monday prior, johnny started feeling terrible. He felt feverish and so he locked himself in our room. I got out all the many pills, drinks and vitamins in case it was Covid. He tested on Tuesday and it was negative and so we decided to proceed with Rosie’s infusion. No one has symptoms and he was still locked in our room. 

Rosie got her infusion and back on steroids she went. On Thursday, our friends took johnny into their pool house. He was feeling better but had a cough. Rosie was so tired. She didn’t want to get out of bed. We had been sleeping on the couch together in the living room. I was so grateful our friends took johnny in. I was exhausted taking care of him and Rosie. He took a test again and it was positive. 

Rosie Jane was feeling awful. She wouldn’t get out of bed but maybe an hour a day to play a little. I felt so awful for her. I was feeling fine but I had started to lose my voice Friday night. I was determined to keep powering through feeling totally fine. By Sunday I had a little headache and johnny told me I should just test because he could come home if I was positive. 

I was and sure enough a few days later I got the fatigue and all the sinus fluid. By this time, Rosie Jane was doing really well. I made sure to drink out of my kids cups at this point since we were all basically hanging out anyway and we were going to be home together the next while. 

During this time I was so confused how Rosie Jane did not get a fever. She had to have got Covid. She slept with johnny the night before he came down with it and then I got it almost 6 days later. I’m sure she gave it to me. I was listening to a podcast at the time talking about how famotodine was a huge preventable way to treat Covid but they didn’t know why. When Covid happened in Wuhan, the people on a famotodine were staying out of the hospital. 

And then she happened to have her infusion and because of her infusion, she was put on famotodine and steroids. 🤯 How lucky were we? Rosie Jane just happened to be on two meds that help treat covid when she got it. 

We could not have planned that better. I was so relieved and grateful not only we got Covid at this time and but also this strain. A huge huge blessing for our family. The only downside was that it was almost a month out of school because I refused to buy tests that you couldn’t find at the time and then finally the school giving us tests basically when the kids could almost go back. It was a long few weeks with everyone home 😆.

In February, Reed came home with a nasty virus. He was over it through the weekend but poor Rosie Jane got it. She was the only one. She was admitted and still testing positive for Covid. I was floored. It was a month later. Her oncologist was sure she had it in January but she said her kids were holding their positive sometimes 6-8 weeks. Unreal. Being in a hospital with the scarlet letter was awful. You can’t leave the room except to go straight to your car to leave. You have a big sign on your door letting everyone know they have to wear all the gear to enter the tainted space. I couldn’t wait to get out of there. Just in case Rosie had Covid still, a month later, they gave her some antivirals. As soon as they gave those to her, instantly her bowels stopped working. We were out but had to go to outpatient to get the next round of antivirals. Johnny was there with Rosie Jane and then I came in to switch him. Rosie Jane was screaming that her bum hurt and she needed to poop. I rushed her to the bathroom with her IV and the ladies started screaming at me to not go into the bathroom. They were on top of me stopping me and telling me I could only use the special bathroom for Covid patients. We went in there and Rosie Jane was bawling in pain. I cried with her. I was so tired of this. After 30 minutes of crying, finally a nurse knocked on the door to ask if we needed anything. I told her we needed milk of magnesia. The antivirals have stopped her system. She can’t go to the bathroom. She told me that was not possible it wasn’t a side effect. This is so unnerving to me. Just because it didn’t happen in the clinical trial, doesn’t mean it can’t happen to Rosie Jane. 

Needless to say, she has never recovered from those meds. Her next infusion of Vincristine, her bowels stopped completely and she was back in the hospital again. Everything we have tried in the past has worked and now it doesn’t since those antivirals. Her gut has not recovered. Her dose in June we asked to reduce the Vincristine to 50% in hopes to keep her out of the hospital. Her doctor agreed and she made it through June without a hospital stay. Not only that, but we took her on her first road trip to my sister’s house and she loved it. Except for heat. She can’t do heat at all on chemo. It made her so so grumpy. But to be fair she was on steroids. 

During our last lab appt, her doctor asked if I still wanted 50% Vincristine for her last infusion. I said please. She agreed. 

I can’t even believe we are talking about her last infusion. It’s unreal. Two years in July since she was diagnosed and now she has made almost made it.

We are all itching to be done. My kids are begging to let people in the house. Rosie is begging to go into places. She wants to learn how to swim. She wants to go with the kids places. She wants to go to stores. 

We decided to keep her at rose drive next year and hold her back a year. We wanted to minimize change since she will go to arm sticks in October. I’m terrified for myself and her on how that will go. 

She definitely has delays and she still needs speech. She still struggles walking, running, tripping, and wearing her shoes properly from her neuropathy. 

But she has also made so much progress. She is coming along and to be fair she really lost a year of her life with the first year of chemo. She does get frustrated easily. I try to push her without seeming like I’m pushing her. It’s a difficult balance and sometimes I’m so tired of fighting with her. She is so grumpy some days but I’m sure if I felt terrible I would be grumpy too. She still goes to PT and trauma therapy. 

She is still on her pill dosage of 50% every day. She is amazing at taking her pills. Her last chemo pill is scheduled October 1st. Everyone keeps asking if we are having a big party. Yes- I’m completely having a nap party. I’m going to let my kids have their friends over and Rosie go to a store and then johnny and I are taking a really really really long nap of rest and nothing. We are so tired. We are so so tired. I think the first year it was so scary for us and we had the fight or flight response to keep going and this year, because it wasn’t so intense we finally got a chance to come up for air and start to process what had happened. It was a lot. I don’t think we are there, but we are getting there. We would not have survived without all the kindness of our friends, neighbors, my parents, my sister taking my kids over and over again, and Johnny’s siblings.

It has helped keep us afloat and especially all the prayers. 

Thank you so much for remembering her in your prayers. She still needs them. And we are grateful for all the blessings she has received in-spite of being thrown this in her life. 🧡