My Pretty Pink Princess: 2021

Simone has been asking me "why haven't you been writing about me?". I guess she likes to read back about what she has gone through. Here we go again.

I can't believe it's been 3 yrs since I have posted anything. Life has been pretty normal until last year in February.

Simone had her first grand mal seizure. I remember it was Feb. 16, two days after Valentine's day. I was watching a show downstairs, then all the sudden I heard a thump and some gurgling. I was thinking to myself what in the world is that. I ran upstairs and Simone was having a seizure. It was so scary. I yelled for Matthew and Carson ran out also. Matt made sure to lay her on her side. She was really out of it. I called 911. The ambulance came pretty quickly. They were trying to ask me question but I could hardly concentrate. I was in shocked and so scared for her. It was terrifying. We took a ride in the ambulance to Primary Children's. She started to come to in the ambulance. I could chat with her a little bit but she was very scared and crying. She eventually calmed down. The ambulance guy gave her a barista soldier bear. She kept pushing it away because it wasn't a cat. Haha! Even in the ambulance she is always a cat girl. That was just something kind of funny I remember. We got to the hospital and they did all kinds of scans on her and test. Turns out she has epilepsy too. I was thinking to myself, things keep getting added on for her. It made me sad. She has been on epilepsy medicine since then. Occasionally she has a seizure but nothing like the first one. Weird thing is that when she has had a seizure, she always goes to try to find her sister, Carly. She tries to walk to find her where ever she is . Sometimes she hasn't made it to her and we find her. She also wears a seizure watch at night that will notify us if she is having a seizure. That gives us some comfort. We have kept her close to our room since then.

A little over a year ago we moved to a new house. We love it a lot and the kids have all thrived. It was a great move for our family.

January 11, 2021 Simone had another MRI which showed there was quite a bit growth on her tumor. We were all devastated. It took some times to adjust to know that she will be doing chemotherapy again.

We decided if Simone has go through this and our family we were going to take a family trip and make some fun memories. You never know how this chemo journey is going to go. This was during the coronavirus so the only place we could really go was Disney World. We had a great time. We spent about a week in Florida. On our way there, the plane was delayed so we had to spend a night in Texas. The hotel we stayed at was crazy. There was an intercom in the room. That was the weirdest. The lady who was in charge said over the intercom to please have their kids stop running around the hallway. That was the first intercom experience. Then 3 times during the night the fire alarm kept going off and the intercom repeatedly kept saying "fire, fire, fire, please evacuate. It was crazy. Especially, since there was no fire. Needless to say, none of us got any sleep. It was sure an adventure though. A night we will not forget. Anyhow, we had a lot of fun at Disney World. The weather was awesome. The rides were all so fun and Epcot was fun to go and try different foods.

During this time, our insurance had been denying Simone's Chemotherapy that the doctor thought we should be doing. It is a new chemotherapy. A pill. No port which is awesome for her. Ports are no fun. Anyways, on the 3rd appeal they finally approved it. Seems weird to deny a child medicine. We did another baseline MRI. The tumor had stayed the same since the one in January. March 15, 2021 was when she finally started her chemotherapy. She has been tolerating it well. It's nothing like the other chemo. It was hardcore compared to this. She has not really been sick at all. More tired though and some weird skin issues. She has been losing her hair slowly, which she dislikes very much. Makes me sad for her. She always has a positive attitude though. Happy about life. She loves exercising and friends. She loves her teacher at school. She has been able to go to school through all of this. I'm happy that is a bit of normalcy for her. We go to a lot of Drs. appointments every month.

In July, we went to Montana. The kids had a great time at Mimi and Papa's cabin. Playing with cousins and enjoying the lake. It is a great experience for them. Making good memories with our family is what matter's a lot to us.

One other thing, back in July we had gone to the dentist and had some X-rays. Turns out Simone's back molars we growing in the wrong way. We had to get them surgically removed. I thought to myself "oh brother, this is so bizarre". We had them removed in August.

It is October and things are going pretty well considering what Simone and our family our going through. The physical, emotional, and financial toll chemotherapy has on family's is tough. I am grateful that we are handling it pretty well.

Simone's birthday is coming up. She will be 12. I love her a lot and am grateful for her spirit and positive attitude. She is a light to me and all who come in contact with her.

This is Montana.