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.