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!!

Week of August 11th

Leila had her weekly doctor appointment on Monday this week. She is doing well, although her white blood cell count was quite a bit lower than last week. She still has plenty of energy and is eating well.

We are looking forward to seeing Ziad's sister (Dania) this weekend. She is coming to stay with us for a week and has never been to Vegas. The kids are excited to see her and have someone else to play with.

Rami will be starting school on August 25th and Leila will resume her tutor lessons at home the same week. Deena will be starting preschool two mornings a week for the first time. Rami is not looking forward to the start of school, but mom sure is!!

Leila's "Cancer SUCKS" cheer video

A weekend in Arizona

We went to Sedona, Arizona for a weekend get away as a family. We enjoyed the scenery and beautiful Red Rock mountains. Leila was feeling better, so we relaxed together and spent time in Old Town Sedona. We did a little shopping and met a nice cowboy. We stayed at a beautiful resort where the kids enjoyed swimming and playing.

Rough week for Leila

This week Leila had another Spinal tap along with four different types of Chemotherapy. The days following the treatment were rough for her. She had leg, stomach and back pain for several days after the treatments. She slept a lot and laid around with mommy trying to comfort her as much as possible.

Leila's Ohio trip

We have been in Columbus, Ohio for the past week. We are having a great time with family and friends. Leila has been doing very well, and has enjoyed playing with her cousins. She has had a lot of energy and handled the travel better than expected. She continues to take her necessary medication while we are away.

Leila had a great time yesterday; when she got to drive a golf cart at our friends house. She was laughing and smiling from ear to ear. She was also doing cartwheels with her cousin Sophia last night. It is so good to see her full of energy and life, and having such a good time. We will be updating the blog next week when we return home again.

4th of July week

We had a fun 4th of July celebration. Ziad's mom (Tata) came to visit us for a few days. Leila, Rami and Deena enjoyed the extra attention. Tata got to spend some quality time with all three kids. She spent time cooking for us and we had a great time. We spent the 4th with our neighbors and enjoyed the fireworks in our neighborhood. Ziad's brother Waleed and his wife Stefanie also came for a few days to visit with us and see the kids. They enjoyed swimming with Leila, Rami and Deena and playing the Wii. We spent an evening on the Las Vegas strip to show Stefanie, who had never been to Vegas. Leila did well and was fine with walking around to see the sites.

Leila has done incredibly well with her medication in this stage of treatment. She has only complained of her stomach hurting, but no sickness from it. She continues to have a lot of energy and she is eating well.

With Leila doing so well, we have decided to make the trip to Columbus that we had planned long ago. Mom and the kids will travel on Tuesday back to Ohio and stay for 10 days. We are looking forward to seeing the entire family.

The Make A Wish Foundation

There is one thing we forgot to mention last week that Leila was excited about. We had a visit from two women who are wish grantors with The Make A Wish Foundation. They spent an evening with our family to get to know us and especially Leila. They were here to gather information from Leila on what type of WISH she may want. Previous to this visit, Leila had been talking about wanting her bedroom changed. She has been wanting a Hannah Montana room, because her friend Emily has a HM bedroom. She expressed that to the wish grantors and they were so excited to try and make her wish a reality. Her second wish was for a trip to DisneyWorld, but at this time we are not sure about traveling. In the next few weeks, we will find out the details of Leila's WISH. It gives her something fun to look forward to.

The start of a new stage

On Monday, Leila began yet another new stage of the treatment process. This stage is called Interim Maintenance. She received a chemotherapy called Vincristine through her port IV, which she has had many times before. This is the chemo that makes her hair fall out the most. She also had her weekly blood counts. In addition to this, she is back on Dexamethasone (THE STEROID) for five days. She will continue taking the Mercaptopurine chemo pill throughout this stage also. We also added one more chemo pill which is called Methotrexate oral. It is only given to her once a week, but it is seven pills that have to be given all at once at night before bed. Leila has not mastered swallowing a pill yet, so mom continues to crush the pills and add them to jello.

Leila had to stay up late Monday in order to get all of the medicine down. She slept with mom and was very restless throughout the night. She made it through the night without any problems. Mom was worried about the new pill Methotrexate, because the side affects are known to be bad.

Living day to day...

After having such a positive good week, we are now experiencing quite the opposite this week. On Monday, Leila had her weekly appointment with Dr. Bernstein. Everything went well and her blood counts were good. After the appointment, we stopped at Sunrise Childrens Hospital to visit a little girl who we met that also has Leukemia. She is four years old and is also a patient of Dr. Bernstein. Leila had been wanting to go visit her and take her a gift. We stayed for a short time and then headed home. Throughout the day Leila's behavior and mood changed quite drastically. Her mood became very upset with screaming and crying fits along with tantrums similar to that of a two year old. She was also aggressive with her behavior at times. She seemed unable to control her outbursts and did not respond well or listen to any type of reasoning. This again proves why we can only take one day at a time. We are also realizing that we are pulling strength from within ourselves that we never new we had. It is amazing what your mind and body can handle when you are forced into a situation that is out of your control!

A good week!

Leila had a spinal tap on Monday along with the chemotherapy injection of Methotrexate into the spinal fluid. This was the fourth week in a row of this procedure. This has to be done in order to check for any Leukemia cells that might be hiding in the spinal fluid during this stage of the treatment process.

It is a quick procedure, but they do sedate her so that she will not feel it or remember anything. She usually wakes up fairly quickly afterwards. She has been doing very well each time she has had it done.

Leila has definately had more energy this week and has enjoyed playing with her friends. She was not eating much during the week of the fever and hospital stay, but seems to be wanting to eat more now. We are having a good week!

Tuesday June 10, 2008

We headed to California and stayed in a nice two bedroom condo. It was across the street from the beach in Oceanside, where we used to spend a lot of time. We spent two days at the beach where Leila and Deena enjoyed standing in the ocean and letting the waves hit their legs. Rami and Ziad spent their time building a huge sand tunnel which Leila and Deena also played in. We brought the wii game with us, so while we were relaxing in the condo, the kids were playing. We enjoyed our family time together!