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.

 

                                               Car ride to Montana.  Ezra, their cousin joined us for the ride.

                                               

                                             Simone, Carly and I at girls camp together.  It was so fun!

                                             

                                               

                                           

                                          The Young Women of our ward made her sign.  That made her feel very                                                       special.

                                            Our neighbor, Brenda, from our old house gave each of our kids blankets.                                                      They all love them and we love her. 
                                         Neighbors from our old ward gave us Presents for the kids after they heard                                                                 about Simone.  We felt extra special!

 

                                         Trip to Disney World.  Fun, Fun, Fun

                                     

                                                          What a Beauty!!!

I wanted to give an update on Simone.  Many people have been asking about her. 

Simone has been doing great.  It has actually been 2 yrs since her last chemo treatment.  I can't believe it's been that long.  Any who, she had an MRI last month and the tumor has stayed the same.  No new growth.  Hooray.  

She is a regular 9 yr old girl.  Her hair has grown back and is a beautiful red color.  She still loves dancing and ballet.  She loves playing with her friends.  Her 3rd grade teacher, Mrs. Anderson, is marvelous.  So kind to her.  She loves her a lot. Also, her primary teachers, Sister Harding and Sister Firmage, She loves them and talks about how she loves her class at church.

 Simone also has such a sweet heart.  She is constantly writing notes to people to make them feel so special. That is her nature.  I am so proud of how she faces her challenges with a happy attitude constantly.  I wish I could be more like Simone.  She is one of the greatest examples I have in my life.   

Christmas is coming up and we are all doing great.  We love you all.  Thank you for all the prayers for Simone.  

 Halloween pictures up top of course.  Simones birthday.  A doctors visit from the MRI.  A family picture in the mountains and the kids playing in the rain.  All fun times except the Drs. visit. of course.

It's been a while since I have updated on Simone.  She had a MRI in April and one last week.  They both look good.  Her tumor is staying the same with no new growth.  We are relieved and happy that the chemotherapy has worked for her.  Now it's just watching it every 3 months to make sure it's not growing.  Her hair is growing back in nicely and she loves it.  She is such a special girl and kind to those around her.  She has been doing ballet and loving it. 

These other pics are from the 4th of July reunion we had.  The kids had a fun time.  You can tell they were totally worn out and super dirty.
Our lives are back to normal and we are all doing great!!




                                                                                

Good updates for Simone

2017
It's been a while since I've updated on Simone.  A lot of fun things have a happened for us in the past little bit.  In November Simone was able to Make A Wish to go to Disney World.  Her wish was granted by a special princess party that Jordan High School threw for her.  It was awesome and the high school kids were pretty darn amazing.  Simone enjoyed the whole thing. As you can tell Ariel is her favorite princess.

In January Simone had another MRI that showed her tumor hasn't grown at all.  We are all pretty relieved that everything is looking good.


This past week we returned from our Make A Wish trip. It was amazing! We stayed at a place that was called Give Kids The World.  We went to Disney World for 3 days, Universal Studios, Lego land and Seaworld.  We had a great time.  Everyday was packed with fun and a lot of walking.  The kids did great.  We are so grateful for this time we got to spend together.

 Simone is doing great.  She is feeling good. I feel she is doing really well and hope and pray that everything continues to be.
 Simone has another MRI in April so keep her in your thoughts. 


Also, wanted to give a big public "Thank you" to Make A Wish.  They are Awesome!!!

Oct 7 was Simone's 7th birthday.  She had a great time with some cousins and friends.  We had some fun games and an awesome cake my sister, Alisa, made.  Simone thought it was the best party ever.

 On Wednesday, Oct 12, the day started out with taking Simone to Primary's Hospital in Riverton for an MRI.   This time she wasn't going to be sedated.  We wanted to try it without because she hates being put to sleep.  We got there and I thought for sure she would be confident and wouldn't be scared.  The MRI machines are so loud and a bit claustrophobic.  We get in the patient room.  She has an IV put in because she has to have contrast.  No big deal to her.  Then we head to the MRI machine.  She seemed fine.  She gets up on the table and gets strapped in.  The nurse puts the The Little Mermaid on for her with these big glasses that block out the light and big ear phones to block out noise.  She seemed o.k. but wanted her arm out.  I think she was getting a bit unsure as the time went on.  So as Matt and I were leaving the room and down the hall.  We could hear her yelling "I can't breath" and "stop what you are doing, I can't do this".  We walk back to the room.  She is panicking.  The nurse pushes the button to slide the table back out and unstraps her.  She tries to calm her down but was having a tough time.  The nurse asked if there was anything she could do to help her.  She said "can I have my Mom just touch my legs when I do this. It will make me feel better".  So I stood in there with her, touching her legs the whole time.  She did great and I only saw her move her nose a few times.  She is awesome!
Next we head to the main Primary's Children's hospital.  We have to go to Neurosurgery to get her shunt reprogrammed.  Every time she gets an MRI sometimes her shunt moves a bit because it has magnets in it.   It had moved a bit.  So they fixed it pretty quick and we were on our way to our next stop.  We head up to Oncology.  I was feeling quite nervous.  They weigh Simone in and get her wristband.  She is happy to see everyone.  They all love her there.  We get to the room and wait a bit.   Dr Bruggers arrives and tells us the great news.  Simone's tumor has not grown.  She is doing great.  We are excited and scared at the same time.  Its a relief to not have to go to all the doctors appointments, blood draws and chemo, but scary to not have her on chemo.  We don't know what the tumor is going to do now.  Crossing our fingers it never grows again.
The nurse says she has a surprise for Simone.  She takes us to the back and a bunch of the nurses and her Dr are back there. They had a blanket with a bunch of toys wrapped inside.  Simone thought this was awesome.  She also got to ring a bell 3 times to signify the end of her chemo.  They sang her a song too and she loved it.  It was so neat.  I will never forget this day.

 Simone has so many people who love her and our family.  We are grateful for all the people that have fasted and prayed for her. We are also grateful for all the special things people have done for us throughout this year.    Simone is truly an angel on earth with a little bit of sass.  We are so lucky to have her.
This next week Simone will have her port out and we will be on to the next chapter of life.  Hoping for the best.  

This summer has been so fun.  Simone has had an amazing time, especially in Montana.  She stayed outside playing almost the entire time.  Her Dad loves fishing and spent most of his evenings doing it.  He  hadn't caught any fish the first couple of days and was determined to catch one.  Simone saw that her Dad needed a little extra help.  She said quite a few prayers for him to catch a fish and finally he caught one. 

We were lucky. All of her treatments ended up working around these great vacations.  Simone did suprisingly well with her July treatment and she enjoyed every moment hanging out with her cousins. 


1 week ago Simone started school.  For now she will stay at home until her chemotherapy is done.  We're lucky to have teachers come to our house until she is ready to go back. 

Last week she also had her 2nd to last treatment.  Let's just say it wasn't that great.  She was pretty sick for a few days but is feeling better now.  I love how Simone is always excited for life.  She is a good example.

We are so excited she only has 1 more treatment left.  In October we will have another MRI to make sure everything is still looking good.  Hoping for the best!!!

Yesterday Simone had her MRI.  It showed there was no new growth with her tumor.  It just stayed the same.  We are very happy about that.  She was also going to have chemo but her blood counts were not good enough to receive it.  Hopefully next week her body will have recovered enough.  So we are up for a crazy schedule next week with this.  Thanks everyone for your prayers.  We love you!