Make A Wish Holiday Party

On Thursday night we attended Santa's Open House, hosted by the Make A Wish Foundation of Southern Nevada. It was held at the Excalibur Hotel and Casino, and was decorated like a winter wonderland. The buffet table had holiday cookies, candies, chocolates, lollipops and brownies as well as other foods. There was also entertainment throughout the evening with singers, clowns, balloonists and games for the kids. One of the main singers was Meaghan Jette Martin who played "Tess" in the movie CAMP ROCK. Leila, Rami and Deena enjoyed getting their picture taken with her. There was also a visit from Santa Claus, who gave each child a gift after taking a picture with him. They also had a special room set up for cookie decorating and each child was given two huge cookies to ice and decorate any way they wish. It was a wonderful night and the kids had so much fun.

SNOW in Las Vegas

This past week was very different for Las Vegas. On Wednesday afternoon it started snowing and continued throughout the night. The snow storm left several inches of snow on the ground, so of course the kids were very excited! This was a small fraction of the amount of snow that we are used to, especially coming here from Minnesota, but it was a lot of fun. Rami spent hours building a snow fort with his friend, and Leila and Deena built a snowman with mommy's help. All of the schools closed on Thursday, which made the kids happy!

Shop With A Cop

On Saturday morning we were invited by the Candlelighters organization to attend the Shop With A Cop program at a local Kmart store. Leila, Rami and Deena all participated in the event that was hosted by the North Las Vegas Police Department. The officers had raised money to be used for each child to shop and pick out toys, bikes, clothes, electronics and anything else they could find. There was also a visit from Santa Clause and each child had a turn to sit on Santa's lap and have a picture taken with the officer who helped them shop.



It was a great time and it was well worth getting up before the sun and shopping at 5:30 am. We also got to see a few of Leila's friends from Dr. B's office.

Leila's 7th Birthday

Leila had a great time turning seven! We had a party at our house with about ten kids and then three of her girl friends stayed for a sleep over. They played games, made crafts, chased the boys around the house, watched movies, ate junk food, painted Ziad's toenails (yes they did) , swam in the jacuzzi, stayed up all night and destroyed the house. She had so much fun and it was all worth it!!!!!

We were all very tired the next day, but seeing her so happy was all we needed.

Make A Wish Firefighter calendar event

The Las Vegas Firefighters teamed up with Make A Wish to create a calendar which will be sold to benefit Make A Wish children in our area. Leila was one of the children who had taken pictures with the firefighters, so she was among a few of the kids who went up on stage during the kick off event held at the Fashion Show Mall. All of the firefighters who posed for the monthly calendar were there to strut down the runway and sign calendars. Leila enjoyed getting the autographs and pictures with the firefighters.

Another tough week

Leila was back on the Dexamethasone (steroid) this past week and had a tough time. She had the same stomach pains as well as lower back and leg pain that she seems to have each time she takes this steroid. Now that she is in the maintenance stage, she will continue each monthly cycle which keeps repeating itself. Every month she will begin with a week of steroid and an IV chemo along with the other oral chemotherapy pills and antibiotics. This will continue for another year and a half. During the steroid weeks, we wonder how she will be able to go back to school and get through an entire day or week of class. Hopefully being back in school will help to take her mind off of how she feels when taking all of this medicine.

Third week of Maintenance

Leila is doing great! She has adjusted to being back on the oral chemo and takes it like a pro. She doesn't even put up a fight to take anything. She is so used to it all and it has become routine to her and mommy. Her blood counts are up and she has a lot of energy these days. She has been enjoying playing with her friends, going to the park and riding her bike. She has been doing great with her tutor Mr. Gardner. He leaves homework for her each week and mommy helps oversee that she gets it done. Her quarter grades came back and she received three A's and two B's!! That was very exciting to see. Last week we took Rami to school in the morning and Leila got to see the kids in her class. Her teacher invited her into the class to meet everyone and she was given a very warm welcome. A few of the girls took Leila by the hand and guided her through the classroom. For me (mommy) it was an emotional moment filled with fighting back the tears that wanted to flow down my face. Many of the tears over the past seven months have been those from heart ache, but these tears were from pure joy!!! Seeing her in that environment and the fact that the kids were so nice to her, made it all seem easier. We will continue to visit the school and let her see the kids, so they can get used to her before she returns in January.

Leila starts the Maintenance Stage

This week Leila had a spinal tap along with the chemo Vincristine and Methotrexate. She began the last and final stage of her treatment called Maintenance. This is the longest stage that she will be in until finishing the therapy in June 2010. She is now back on all of the oral chemo drugs which she takes on a daily basis. It seems like it should be easier now that she has taken these drugs before, but the side effects show that her body is adjusting once again. The IV chemo seems to affect her differently from the oral, especially the steroid she is back on now. She still has stomach and lower back pain as well as head aches. The good thing about the Maintenance stage is that we do not have to go to the clinic as often.

Ziad shaves his head for Make A Wish

When Leila was first diagnosed with Leukemia, Ziad had told her that he would shave his head when she lost her hair from the chemo. Over the past six months, Leila's hair has fallen out gradually. She is now completely bald and usually covers up with her favorite bandanas.

Ziad told some of his coworkers and friends that he was going to shave his head soon. They decided to raffle off tickets for a chance to shave his head. The tickets sold for $5 each and the winning ticket holder could shave his head any way they like. We decided to donate the proceeds of the head shaving to the Make A Wish Foundation.

As the weeks went by in selling raffle tickets, Ziad had two other co workers who volunteered to shave their heads with him. The first one was Ron Hatfield who is the Project Manager at the PBG plant here in Vegas. He has worked very closely with Ziad in the start up of the new plant.

The other co worker was Chad Buechel who is the Plant Manager in Fresno, CA. Chad was also a huge help in raising money for Make A Wish. His PBG team raised a good portion of the total amount of money for MAW. We would also like to thank Julie Hunkin and Eric Lane for organizing the raffle and collecting the money. All together a total of more than $12,000 was raised.

Thank you to everyone from PBG who helped raise money for the Make A Wish Foundation and for supporting Ziad throughout Leila's illness. We are forever grateful to all of you who keep Leila in your thoughts and prayers.

Another week on hold

On Wednesday we went back to the clinic all prepared for Leila to have a spinal tap and chemo. Once again her blood counts were too low to start the next round of her treatment. We will wait another week to see how she does.

Last night we all attended the Candlelighters Halloween Party. It was held at a local motel down near the strip. All of the motel rooms were decorated and the kids went trick or treating from room to room. Each room was designed with different Halloween scenes and everyone was dressed up passing out candy and goodies. Rami and Leila had a great time. Deena was scared of everything including her own shadow! In addition to the trick or treating, they also had horse and pony rides, a carnival with games and food for all to enjoy. We spent the evening with our friends Rachel and her daughter Olivia. The girls had a good time hanging out together. Dr. Bernstein showed up wearing a Superman costume. All of the kids had a great time dancing with him and taking pictures.

A week off of chemo

Leila's doctor appointment this past week was to get her blood counts only. She had another week off of chemo and no other treatments. Her blood counts were a littler higher than last week, so she didn't need anything else. She has been fighting a cold with runny nose, sore throat, cough and froggy voice this week. This has made it difficult to have her out and around much. We try to stay close to home when she's not feeling well. She did have a slight temperature one day, but it did not develop into a fever.

Grandma and Grandpa Brown arrived this weekend to stay with us through Halloween. The kids love having them here and getting the extra attention. It is also nice for mommy to get a much needed break. We have several Halloween parties and events coming up this week, so we are hoping Leila will feel up to it all.

Leila will have her weekly appointment on Wednesday this week. She is due for a spinal tap and chemo. This will be the beginning of the Maintenance stage of treatment. This is the last and final stage which she will stay on until she is done with treatment in June 2010. We still have a very long way to go, but she has done great with everything so far.

A day at the hospital

Leila's weekly clinic visit was eventful on Wednesday this week. She was due for blood counts only and NO Chemo. Her hemoglobin came back very low, so we had to head over to the hospital for a blood transfusion. This turned out to be a very long day for all of us. Things run very slow in the outpatient area and it takes at least three hours to administer the blood. The nurse has to monitor Leila's temperature and how she is doing during the transfusion in case of any reactions. All together it was another eight hour day for Leila. She was very good throughout the day and she and Deena kept busy doing Halloween crafts during our time there. Ziad met up with us at the hospital to help keep them entertained.

Leila Dancing in Car

Need we say more.....Leila at times acts like her good old self, dancing and having a good old time, oblivious to her siblings :) Rami and Deena don't even pay attention, they just ignore their crazy sister!!!!!!

A morning at Firefighters training center with Make A Wish

On Sunday, Leila was invited to a photo shoot with the Las Vegas Firefighters and a group of kids from Make A Wish. The pictures are for a fundraising Las Vegas Make A Wish calendar. It was a fun morning spending time with the firefighters and hanging out on the firetruck.

The last week of Delayed Intensification stage

WOW! We can not believe we are in the last week of this stage! We have been making our daily visits to the clinic for chemo each day. Leila has been having a lot of stomach pain this week and not feeling good at all. She has not been eating much, but is drinking well.

Mr. Gardner came but was unable to stay to work with Leila. She was feeling very sick and needed to lay down.

The past week of intense chemo finally hit her hard and she got sick. It actually made her stomach feel better. Mommy gave her a Zofran pill which is for nausea and vomiting. The Zofran worked well and she felt better afterwards.

After having a hard two weeks, Leila wanted to spend some time with her friend Emily. They always have a great time being goofy together. Leila misses socializing with her friends, so this is quality time for her.

Make A Wish Dune Buggy Event(aka SNORE)

On Sunday we drove out to the desert near Lake Mead for an annual Make A Wish event. Each year they host an off road vehicle ride for the kids who have received a WISH. It was a fun exciting adventure for our whole family. Leila and Rami loved the rides in the dune buggies on a trail through the desert. Mommy and daddy had fun too, but we were sore the next day. Deena decided not to participate. She enjoyed the clown who was making balloon animals. We look forward to going again next year.

A long week for Leila

This past week we spent four days at Dr. B's office. Jenni, our nurse practioner, on left, checks up on Leila before she performed Leila's spinal tap. On Monday, Leila had a spinal tap as well as an all day chemotherapy called Cyclophosphamide. This chemo had to be administered slowly and flushed with sodium chloride for four hours. In addition to that she was given another chemo called Cytarabine and the regular Methotrexate which is given into the spinal fluid. This made for an eight hour day on Monday. The nurses made sure to give her a large dose of anti nausea medicine at the end of the day. The following days we went back for the Cytarabine which will continue every day next week also. She also started a new oral chemo called Thioguanine to be given at home once a day.

Leila made it through the week very well considering all that she was given. She was very tired and had stomach aches, but nothing out of the ordinary. She still had her tutor come three days last week. Mr. Gardner cut it short each day because she was tired and had a hard time concentrating.

We are getting close to the end of this treatment stage. It has gone very fast, thank goodness! We feel like we live at the clinic, but it is better than the hospital!!

Another week off

This week has been an unexpected week off of chemo. We showed up on Monday for Leila's spinal tap and IV chemo treatment, but her blood counts were too low to begin this round. Leila was happy that she gets another week without any meds and can still keep eating.

We have tried to have fun this week by getting out and playing. We went to the park yesterday and met up with a friend who has a lot in common with Leila. Olivia who is four years old was also diagnosed with ALL-Leukemia just two weeks after Leila. We first met them at the hospital and have kept in contact with them over the last few months.

This was the first time we were able to get together outside of Dr. B's office or the hospital. We had a great time and Deena enjoyed playing with Olivia's younger brother Aaron. It was also nice for mommy to have Olivia's mom Rachel to talk with and compare our stories together. We look forward to seeing them again soon!

A week off of therapy

Leila is doing well this week. She has the week off with no chemotherapy and NO STEROIDS! It makes a huge difference in her physical and emotional well being. She is a different kid without all of the drugs. She still continues to eat a lot. The steroids stay in her system for a couple of weeks, so she is eating everything in the house.

She is loving her new bedroom and spends time playing there on her own. She has been sleeping very well and enjoys her new comfy bed. She gets up each morning and makes her bed and puts all of the pillows back on just the way that Nancy and Emily had placed them. She does a better job of it than mommy ever could.



For our Las Vegas friends, we wanted to let you know that Leila's Make A Wish segment will air on Monday September 22 at 4pm on Channel 3 during the local news. We are hoping that they will be sending us a copy Leila's Wish, so that we can send it to all of our Ohio and Minnesota family and friends. To view this video, click on 6 year old gets a Hannah Montana room makeover on the website below.

http://www.kvbc.com/global/story.asp?s=9054268

Leila has also been doing great with her tutor. She looks forward to seeing Mr. Gardner especially when she is feeling good. He is very happy with her progress thus far. He gives her homework each time and we work on it when she feels up to it.

Next week will be a long week for Leila. She will have another spinal tap on Monday along with an all day chemotherapy treatment. Then we will return to the clinic Tuesday, Wednesday and Thursday for chemo each day. She will also start another oral chemo. All of these treatments are new chemotherapy drugs that she has not had yet.

We will enjoy the rest of our week off and look forward to a nice family weekend.

Charity Cancer 5K Walk For Kids

On Saturday Morning we participated in the Las Vegas Candlelighters annual 5K walk to support families with children fighting cancer. Ziad's coworker Eric from PBG arranged a team of volunteers to walk or run in the race to help raise money. Over $1,000 was raised and Pepsi matches it for a total of $2,000. Thank you Eric and Julie for all of your hard work. We appreciate your efforts and the funds raised by the Pepsi employees. Leila walked the first 1/2 mile and then sat in the wagon for the rest of the walk. She had a good time but was very tired when we got home.

Leila's Make A Wish came true

Tuesday morning started off with excitement. Leila woke up feeling better than the day before. She was getting more interested in the days events. Grandpa and Grandma Brown decided to stay on a couple more days to be here for Leila's wish. They both helped to keep Leila occupied and busy so that the Make A Wish people could get her bedroom finished. Leila worked on her homework that Mr. Gardner had left for her. She was still very tired, so she did watch some TV and relax in mom and dad's room for awhile. We all kept her from seeing her room and all of the furniture and Hannah Montana accessories that came with it.

The room was done and ready by 4pm. Nancy and Emily had also planned for NBC local channel 3 to come to our home to do a special taping of Leila's Make A Wish as it was presented to her. Daddy made it home in time and Rami got out of school a little early to be part of the experience. The camera man stayed in Leila's room and as she opened the door, he got her first impression on camera. She was so excited and shocked at how AWESOME and COOL her room is now. It has beautiful new furniture along with the best Hannah Montana accessories.

It was a very emotional and unforgetable moment that we will always remember. Thank you Make A Wish and especially Nancy and Emily for all of your caring and love that went into making this wish come true for Leila. We are very grateful!

Monday September 8, 2008

We had a surprise phone call late last night from the Make A Wish Foundation. They called to tell us that Leila's wish was going to happen on Monday and Tuesday this week. She would be receiving her Hannah Montana bedroom make over. Our wish grantors, Nancy and Emily showed up bright and early Monday morning with the painters. They painted Leila's room and hung a new window treatment.

Leila's weekly doctor visit and treatment was also today. So Leila and mom headed out early to go to Dr. B's office while the painters did their job. Leila had her third round of the chemotherapy Vincristine and Doxorubicin today. She is still on Dexamethasone (steriod) for one more week. After a few hours of treatment we came home and Leila was completely wiped out. She was so tired and could barely get up to go to the bathroom. This round of chemo is stronger and more intense than previous treatments, and we are definitely noticing the differences in her.

Our wish grantors had left by the time we returned home. They had to let the paint dry and they would return on Tuesday. They put up some CAUTION tape over Leila's door so that she would not go into her room and sneak a peak. Nancy and Emily want this to be a total surprise for her when it is all done.

Leila spent the night sleeping with mommy. She likes to sleep in mom and dad's bed when she is not feeling well.

Sunday September 7, 2008

Leila spent most of the day either on the couch or in bed with lower back pain. She was miserable and didn't feel like doing anything. Mommy put a heating pad on her back to try and ease the discomfort. We also tried a warm bath and the jucuzzi tub. The heat seemed to help for awhile but the pain kept coming back. She slept good through the night and felt a little better the next day. On Monday, she goes back to the clinic for more treatment.

September 1, 2008 - getting ready for treatment

Leila is starting her second week of treatment in the Delayed Intensification stage. She handled the last week very well and got through the PEG chemo treatment. She had some leg pain as well as stomach pain the days following it. She is beginning to eat more this week with the steroids taking effect.

She enjoyed having her tutor Mr. Gardner return. They work well together and he keeps her challenged. On Thursday, Mr. Gardner had to cut the session short because Leila was not feeling well. He is very flexible with how she is responding and feeling during each session.

Grandma and Grandpa Brown are still with us, so Leila, Rami and Deena are receiving more attention on a daily basis. They enjoy having them around and it helps mom out a lot. Daddy will be traveling this week to Florida, so having the extra hands around is very helpful.

Week of August 25, 2008

Leila started the Delayed Intensification treatment stage this week. She had a spinal tap along with Vincristine and Doxorubicin. These are both chemo treatments that are given into her central line. She also started taking Dexamethasone (THE STEROID) again for 21 days. On Friday this week, she will have the PEG Asparaginase which is another chemo given intramuscular in her legs. This treatment stage is considered the toughest round, so we are preparing ourselves both mentally and physically. Leila has done so well throughout all of this, so we hope for the best and take each day as it comes.

Leila had her first home school tutor session today with Mr. Gardner. He will be coming three days a week to work with her. He will be keeping in touch with her first grade teacher to keep her up to date with what her class is doing. Hopefully this will help her to make a smooth transition back to school when she is able to return.

Thursday August 21, 2008

Leila has had another good week! Her Aunt Dania came to visit us and we spent the past weekend at a hotel on the strip for a quick get away. Leila, Rami and Deena enjoyed swimming, eating out and walking around on the strip.

Leila had her weekly doctor appointment on Tuesday this week. Her white blood cell count was still quite low, but she has plenty of energy. She is due to start another new stage of treatment next week called Delayed Intensification. Her overall blood cell count needs to be at a certain level for her to start this round of treatment. We will find out next week if she is able to begin the chemo or wait another week.

Grandma and Grandpa Brown also arrived today for a visit. They will be here for two weeks. We enjoy them being here and helping us out!!