On Monday, Nov 30,  Simone had another round of Chemo.  This time it really knocked the wind out of her.   It takes her longer to bounce back every time.  By the 4th day she started to feel better.  She is so tough.  That same week on Friday we went to the ear dr. to check her new tubes.  It was somewhat good news because the chemo hasn't affected her hearing.  With chemo it affects the high pitches.  It showed she can hear those but the lower tones were not so good.  We will do another test in a few months to see if her hearing is better.


Thursday we went to the Festival of Trees.  The Young Women of the ward decorated a tree for Simone.  It was a Frozen tree.  Simone loved it!  The girls and their leaders are so AWESOME!  It was so neat to see Simone's picture there.  It touched my heart.

On Sunday, Dec 6, the Young Women of our ward and there leaders surprised us.  Everyone came in our house first.  There probably was around 20 people.  We had no idea what was going on.  Kimberly Dean was so cute how she talked to Simone about her tree.  Kimberly is the sweetest lady.  Then she told Simone to go look out the front door.  On the front porch was her Frozen Tree and an amazing wreath.  It was AWESOME!  The company, Crest Financial, that had purchased Simone's tree wanted to give it to her.  There are no words to describe how special this moment was.
 It was INCREDIBLE!

Thank you for everyone who donated there time and money to make this happen.  You are Awesome!

On Tuesday, Nov 17, the Young Women of our ward put on a special princess party for Simone.  It was so awesome.  I think this will be one of Simone's greatest memories.  I was extremely humbled and amazed at how much work they put into it.  Thanks for all who helped to put this together.       We love you!

On Monday, Oct 19 we went in for another round of chemo.  Before her appointment we went to the audiologist to check her ears.  Chemo can sometimes cause hearing loss.  She failed her hearing test so we had to make an appointment with ear doctor to make sure her tubes were working correctly.
Simone did well with this chemo.  Just a little tired.
This same week on Thursday she saw her ear doctor and sure enough her tubes were all blocked up.  So here we go again another ear surgery.
Oct 27, Simone had her ear surgery and also had her adenoids removed to help with her snoring.

She bounced back really quick.  She was feeling good.  So we decided to go to St. George for Halloween.  The kids had so much fun.  While we were in St. George we noticed Simone's hair is starting to fall out.  She is sad about it but I think she will still be her fun self.

This Monday, Nov 2, she went in for another round of Chemo.  This time she received both chemo medicines.  She did fine.  The nurses gave her a  real stethoscope and blood pressure cuff and pump to play with.  She wanted to take them home so badly.  I told her she couldn't but she kept begging so I said ask the nurse.  They told her other kids want to play with them too so she couldn't.
This picture is her pouting about it.  It is too silly!

In the morning, on Tuesday, around 230 she came in really sick.   I had to give her some nausea medicine.  She fell back asleep but when she woke up in the morning she was super sick.  She was throwing up and couldn't keep anything down.  She was running a fever.  So back we go to the Dr.
They had to access her port again to do some blood work to make sure she didn't have an infection or anything else was wrong.  They also hydrated her and gave her some nausea medicine.  She felt better so they let us go home after being there about 4hrs.  We are getting so good at waiting.

Simone continues to amaze me.  Yesterday we went to Primary's for another chemo treatment.  She had to get her port accessed.  We put some numbing cream on her port an hour earlier so it wouldn't hurt.  Before we went in the room, a lady came to talk to us about how it would happen and Simone didn't seem scared by it at all. When we got to the room Simone sat on my lap.  The nurses were really gentle with her.  They accessed the port and Simone was perfectly still.  She said it didn't hurt at all and she was happy that she didn't have to have blood drawn from her hand anymore.  She is the bravest little girl I know.  We love her so much!  

 

On Sunday, Oct 4, we had a big family surprise party for Simone.  Her face was hilarious. I missed getting a picture of it. Darn it!  She had a great time and loved having everyone there.  She was spoiled!

On Tuesday, Oct 6,  around 11am Simone had her port placed.  It was nerve racking for us.  She was very nervous too.  She hasn't questioned any of this.  Maybe just seems normal to her to have to do all of this.  When she got out of surgery she was still very groggy but manage to tell the nurses it was her birthday the next day and asked if they were going to sing to her,. They did and it was so awesome!

 Later that day, around 6pm, she had her first round of chemotherapy in the port.  It takes about 1 hr for it to go in from the drip.  It doesn't hurt at all when it goes in.  Also, we had a nurse,  Emily, from our old ward in West Jordan helping us.  It was comforting to have someone we know be there.  She was a great help to us.  After Simone had her chemo her anesthesiologist came in to check on how she was doing.  She was doing very well and she also told him that it was her birthday the next day and asked him to sing also.  He and the nurse and Matt and I also sang too.  She loved it! It was Awesomely funny!

Tom and Amber also came to visit.  She was happy to see them.  It was fun to have them there.

 We stayed over night into Wednesday to make sure everything was fine.  In the morning the nurses and her oncologist came in and surprised her with a song and a bunch of cute gifts.  She was so happy!    We went home about 11am. 

Early Thursday morning Simone came in our bedroom and was throwing up.  She had a temperature of 103.  I had to take her back to the hospital about 230 in the morning.  They drew some blood.  Her blood count looked good.   They said it was something probably viral or just recovering from surgery.  I am glad everything was ok.  We didn't want to spend more time in the hospital than we had to.  So they sent us home about 6am. 

This week has been crazy and stressful.   I hope Simone does well on this Chemotherapy as she did on her other chemo.  We will see.

Last Wednesday we went in for an MRI.  Things are not going as we hoped it would.  It showed Simone's tumor is still growing.  Her platelets were also really low so she had to receive a blood transfusion.  
This picture is her waiting to receive it.  She was so good and didn't even complain. She is amazing and doesn't put up a fuss for any of it.   We love her so much!

Next week we will be putting a port in her chest.  She will be receiving a different type of chemotherapy.  We are hoping and praying that this will work.   
She is a champ and a princess!

Simone started kindergarten last week.  She was super excited and she loves her teacher.

                                                               On Wednesday of this week we took Simone to see her Oncologist to start a new month of chemotherapy.   Her blood was drawn but her bone marrow count was to low.  We have to wait for it to come up again before we can start.  She doesn't seemed to be bothered by any of this.  She is so cute! In about a month we are doing another MRI.  Hopefully, cross our fingers, that it is working so she doesn't have to have a port.    

We are on Day 11 of her second month of Chemotherapy.  Simone is doing awesome.  Seems to be doing better this time than last month.  All of the prayers are felt by our family and we feel blessed that she is doing so well. 
Simone's hair hasn't fallen out yet.  Cross our fingers that it doesn't, she loves her hair. 
This past week we spent in Montana with family.  It was so fun!  We were nervous to go with Simone but she had so much fun with her cousins.  It was worth the worry. 

July 6, 2015

Today is day 19 of her first treatments.  She has been doing really well.  Just a little more tired than usual.      She hasn't really complained about anything except for a stomach or an occasional headache.  

She is one tough cookie! 

June 27, 2015

Natalie and Jimmy had an awesome party for Simone.  She loved every minute of it.  Most of the family was there and we were so grateful that they took time to come and support Simone.             Our family is MARVELOUS.    It was amazing!

 

We are on day #7.  She is doing awesome.  Other than a few bloody noses and feeling dizzy, she seems to be feeling fine.  We are doing a chemo pill where you take it for 5 days and have 23 days off.   She repeats the cycle every month. 

She made a tea party for Bryce.  She is such a cutie.

Day 2 of taking the pills.  She is doing awesome!   Happy Girl!

This is Simone. She is 5yrs old.  She is so sweet.   She loves everyone and makes you feel special when you are around her.  She is one of a kind.



May 11, 2010
When  Simone was 7 months old we were at the pediatricians office just for a regular checkup.  Her doctor noticed that her forehead was bulging a little bit.  That made her a little worried so she wanted us to get a CT scan.   So  off we went for the scan. After we went home, a few hours later we got the phone call that would change our family.  They wanted us immediately to come to the hospital.  At that time we lived in Las Vegas, Nevada.  Matt and I drove to the hospital with Simone not knowing what was going to happen.  As we got there they took us to a hospital room and they had Simone do an MRI.  So again we waited for that.  Then they brought us in with the Dr. and they showed us the scan and told us she had a brain tumor.  It is in the middle of her brain by the thalamus.   Matt and I could not believe what we were seeing.  We were so shocked and scared.
 The next day the neurosurgeon talked to us about putting a shunt in because the fluid around her brain wasn't draining well because of her tumor. It's called hydrocephalus.
 The oncologist was against it but the neurosurgeon would not let Simone leave unless he put the shunt in.  We agreed she needed it.  On May 16, 2010 her shunt was put in.  We could not believe the difference in her.  She was more alive than ever.  It was amazing! 

 While at the hospital, the nurses and the neurosurgeon suggested to us that we should probably move to where there is a children's hospital.  We agreed.  In July of 2010 we moved to Salt lake City, Utah  where Primary Children's hospital is located.   

This is Simone after the shunt.  You can tell she feels so much better.  She is so beautiful!

In July of 2010 we had a biopsy done of her tumor.  The diagnosis was a Grade 2 step 4 Astrocytoma.  We also talked with the neurosurgeon about trying to the remove the tumor but since it is in the middle they feel it is to complicated. 

For five years we have been watching Simone grow and develop.  Doing MRI's every 3 to 6 months among a lot of other doctors appointments.  Until now it hasn't grown.  She has been great through it all.  The only thing she really complains about is being put to sleep.  She hates the feeling of it. 

For the past year, we have had 3 MRI's and Simone's tumor has been growing.  We feel it is time to do something about it before it starts to damage anything in her brain.  It's a hard decision but we feel it is the right thing to do and so does Dr. Bruggers, her oncologist.  We trust her and know she is only doing what she feels is right for Simone. 

She will start on a Chemotherapy pill this week and we are pretty nervous for this.  We will see how it goes.