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! 

Last week was packed with fun.  We were on vacation for part of it in Lake Powell.   Simone and her brothers and sister had so much fun.  They all loved the water and enjoyed hanging out with all of their cousins. Good times with Family!

 Simone is going in for her MRI this week.  Keep a little prayer in your heart for her. We are hoping everything looks good.  If it is she will be getting chemo again and she will only have 2 left.  Hooray!

Just wanted to give an update on Simone since it's been a couple of months.  Simone has been doing pretty good.  She had her May chemotherapy treatment and had to receive a blood transfusions a couple weeks later. Her counts were too low.  You could tell she was really tired.  Lounging around.  The transfusions make her feel a lot better and she is running around again.  She is a fighter.

Last week she had another chemotherapy treatment and it was pretty rough.  It make her sick for about 5 days .  Normally it is 3 or 4.  For some reason it really was tough to get over this time.  The next day  after her chemo we had to go to the emergency room because she had a temp of 103 just to make sure she didn't have any infections.  She received some fluids and antibiotics and the only thing she had was the Rhino virus which is the common cold so we were sent home.  Simone has 3 more chemotherapy treatments.  I am pretty excited about that. We hope and pray that this will stop the tumor from ever growing again.  In July she has another MRI to make sure the chemo is working.  I am pretty sure it is because I haven't seen anything different about her that would alarm me in any way.  She just seems her normal cute self.

On Monday Simone had her MRI.  The tumor has stayed the same.  No new growth.  We are pretty happy about that.  Simone also received chemotherapy the same day and surprisingly it was better than usual.  She had a pretty good night and only threw up once.  It was really amazing actually how well her body handled it this time.  I believe it's because of all the people who are praying for her.  

On Tuesday night around 930 she was having a high fever of 103 so I had to take her back to the hospital to make sure there wasn't any infections. They took her blood samples.  They gave her antibiotics and fluid to take care of any infection that she might have.  Everything looked o.k. so we were able to go back home around 2. 

Every time we go to the doctor or some hospital visit of some sort.  Simone always manages to charm everyone.  People are drawn to her.  She has such sweet spirit about her and I am so lucky that she is my daughter.

In mid March Simone had her 6th treatment.   She did alright.  Just the usual sick for about 3 or 4 days and then feeling better.  She's had her up and downs of feeling tired this month but she is such a trooper.  What an amazing girl.  In this past month she also lost 4 teeth on the bottom in a matter of a week.  She kept the tooth fairy busy!

Next week we are doing an MRI to see if the chemotherapy is still working.  I am a bit of a nervous wreck.  It's funny I can go almost 3 months doing o.k. in between MRI's but the last week is always the worst.  If the chemotherapy is working we will continue on.  6 more treatments to go.
 Keep Simone in your prayers.  She needs them!

Thursday, Jan 14, When Simone woke up.  She looked terrible. She was so pale.  I could tell something was wrong.  She asked me if her legs were broken and said her body hurt.  That made me feel so bad.  I called the Dr and they told me to come in.  Her blood counts were so low.  She had to receive blood transfusions.   I could tell after she received it she felt so much better.  She also had a chocolate doughnut.  That makes anyone feel happy!

 
Jan 23, for Simone's sisters birthday we went ice skating.  I have to share some pictures.  She is so funny.   In these pictures she is pretending to be a Grandma.  It is hilarious.

 Yesterday, Feb 16, we finally had Simone's 5th round of chemo.  She is feeling sick but not as bad as last time.  They lowered her dose a little bit since it took so long for her blood counts to come up.  We were supposed to have it the last week of January. It was hard to get the results each time and not be able to go do it.  It is a bit nerve racking.  She had an entire extra month off because of it. I could tell that she was feeling good to be off of it though.  She was running around more than I had seen her do in a long time.
Yesterday I found out that she has 7 more treatments instead of 1 more. We will finish around October hopefully if her blood counts stay where we can continue each month.  I am bummed about this but we will get through this.  She is the best kid.  When the nurse comes each week to draw her blood he just can't believe how she sits still and lets him do it.  She is so calm and sweet.  I can't get enough of her.  We love her so much. 

 

Christmas morning was pretty neat.  Someone had done secret Santa to us a few days before.  

We made the kids wait until Christmas morning to open them.   It was really fun to watch the excitement of our kids.  

On December 26, Simone had another MRI.  We decided to try it without sedation but Simone made the nurse stay with her the whole time because she was scared.   She was a little bit wiggly but she did pretty good for a little kid.  We will have to see next time if she can do it herself.  

December 28th we met with her doctor and found out that Simone tumor is stable.  That there wasn't really any growth since her last MRI.  So it looks like the chemotherapy is working.   We are happy with the results and hope and pray that it will continue working. 

This same day Simone had another round of chemotherapy.  She was pretty sick for about 3 days but bounced back pretty quick to her old self.  She is tough!

We are so thankful for the prayers and the kindness show to us.  We love you!