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!

Monday June, 9, 2008

Leila continued to do better with her temperature throughout the day. Dr. Bernstein released her late that night around 10pm. She was happy to go home and she was very tired. We were all tired but excited to sleep in our house.

Originally before all of this started in our life, we had scheduled a three day trip to CA to the beach. We wanted to go back to be close to where we had lived before. We asked Dr. B if he thought we could still go and he said YES!

Sunday June 8, 2008

Another day in the hospital with antibiotics. Leila is doing well considering she doesn't want to be here. Ziad, Rami and Deena spent the day at the hospital. Mommy went home to shower and then came back for the night. Leila's temperature is getting better with the medicines. Rami and Deena found a boy to play with who is also a patient of Dr. B's. He also has ALL and he walks the hall looking for kids to play with. At least it gave them all something to do to occupy the time.

Saturday June 7, 2008

On Saturday, Leila still had a fever. She woke up with a temp of 103, so we cooled her down in a room temp bath and gave her more Tylenol. I called Dr. B that day and he told me to take her to the hospital. They admitted Leila about 2:30pm into Sunrise Children's Hospital again. they gave her antibiotics again through her port as well as oral. She was in the hospital for three days. Ziad stayed for awhile with Rami and Deena, then headed home that night to put them to bed. I stayed overnight with Leila in her room.

Thursday June 5 - Friday June 6, 2008

Leila developed a temperature which was around 101 - 102 degrees F. I called Dr. B to let him know and he said to bring her in so they could check her. We went into the clinic and they gave Leila antibiotics through her port access. The fever was still present so they gave her Tylenol. They sent us home that night and told us to come back again on Friday for more antibiotics. The same thing on Friday with a consistent fever. Her fever spiked to 103 Friday night. Dr. B and nurse Jenn told us to call on Saturday if she still had the fever.

She's in COMPLETE REMISSION!!!!!!!

We had another spinal tap on Tuesday June 3, 2008. At this appointment Dr. B told us that Leila's bone marrow results were back from last week. She is now completely cancer free!!!!! There were no more Leukemia cells present in her bone marrow, so that was the best news we could receive! Now the goal is to keep her in remission throughout the next two years of treatment.

Tonight she will begin the next phase of treatment which is called Consolidation. She will take a chemotherapy pill at home each night called Mercaptopurine. Leila has not been able to master swallowing a pill yet, so mommy gets to crush the chemo pill and put it into jello for her to swallow. She also continues to take an antibiotic 3 days a week which is an oral liquid that she hates! In addition to that she will always use a mouthwash to rinse her mouth with 4 times a day to prevent bacteria from growing. Chemo treatments can also cause mouth sores, so we are persistent with the mouthrinse!

Day 28

This is the last day of the Induction phase which is the first in the treatment plan. Now she is off steroids for the time being. She will get this week off with no chemo treatment. Her body will have a chance to come off the steroid before starting the next phase of the treatment process.

Leila shows more energy this week and seems happier than before. Her eating has slowed down a bit. She continued to have her school time with Mr. Gardner.

Week of May 19 - 25, 2008

This week Leila continues to eat every hour! She mostly craves cheetos, cheezits, cheese sticks and breads. She eats more than Ziad and I put together. It is amazing that she can put it all down and still want more. I look forward to when she goes to bed at night, so she can stop eating for awhile. The nurses tell us to let her eat what she wants now because later on she won't want to eat anything. I am sticking to that and letting her add the fat now while she can.

Week of May 11 - 18, 2008

Leila had an appointment with Dr. B on Tuesday this week. They said her platelets were low so we had to go to the hospital on Wednesday for a platelet transfusion. This took several hours to complete so we went prepared with things to occupy the time.

On Tuesday and Thursday afternoon, Leila had her tutor time with Mr. Gardner. She does very well with him and he is impressed with her progress.

This week we are starting to see an increase in Leila's appetite. The steroid called Dexamethasone causes overeating, weight gain, a round puffy face, bloated stomach with pain and mood/behavior changes. All of these side effects are "great" for mom and dad to deal with, especially the mood swings. One minute she is screaming and the next she is crying. We deal with it hour by hour! We do our best to be as patient as possible and let her eat everything in the house!

Week after hospital stay

The day after getting out of the hospital we had to go back to Dr. Bernstein's clinic. Leila had to have another treatment of Chemo and blood draw to see where her blood levels were. Everything went well and she continues to do well with the treatments.

On Thursday this week, Leila had her first tutor session with Mr. Gardner. He will be her homebound school tutor throughout the time she is unable to go to school. She enjoyed spending time with him and was excited with what they worked on together. This will continue until school ends on June 4, 2008.