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.

Leila's 8 days in the hospital (April 28 - May 6, 2008)

The first day was spent by putting an IV line into Leila's arm and giving her a blood transfusion. Her red blood cell and platelet counts were extremely low, so she needed two pints of blood and a pint of platelets. The process took several hours to complete.

Leila's second day was the most important one. She had surgery to implant a central line port into her chest. This is where all of the central venous treatments including chemotherapy, blood draws and antibiotics will be accessed. She also had a bone marrow aspiration and spinal tap. Everything went well with her surgery and she slept for quite awhile afterwards.

Leila was very sore on the days following the surgery. She could hardly move her left arm and it was extremely painful to get in and out of bed. Her entire left side hurt from where her port was implanted. It took several days for her to get used to it and be able to move around.

Leila received and abundance of gifts while she was in the hospital. She had plenty of crafts, toys, games, DVD's and webkinz to occupy her for quite some time. She enjoyed going to the playroom on the Oncology floor because they had a computer where she could play with her Webkinz. She spent a lot of time in that room when she felt good enough.

While Leila was in the hospital this week, she also received other chemotherapy treatments. One of the treatments called Asparaginase is given intramuscular, meaning in the muscles of the legs. This was very nerve racking for mom and dad because we knew this would hurt. Leila did great and fortunately for her she had no reactions from it.

Part of this treatment plan includes a steroid called Dexamethasone. It also helps fight the cancer cells. It is an oral medication in liquid form that tastes really bad. Leila did not like taking the oral meds and it was a battle each time she had to take them.

On day 8, Leila was able to go home. That was a great day and she was so excited. Grandma and Grandpa Brown were staying with us so we still had help at home.

Monday April 28, 2008 - The day that changed our lives forever!

Leila and mom went back to the pediatrician's office for a follow up visit. He examined her and said her spleen had grown over the weekend. She looked even more pale and lethargic. The nurse brought the lab results in and he looked them over and said "This is very concerning". He looked at mom and said, "I need to make a phone call to a Hemotology specialist right away". He left the room for a few minutes. While he was gone, mom read the report and tried to make sense of the lab results. When the doctor returned, once again he looked at mom and expressed how concerned he was about the results. He then preceded to tell mom that it was Leukemia.

He sent us immediately to a Child Oncology/Hemotology specialist. Mom called dad to give him the news and he left the grand opening/ribbon cutting ceremony for the new Pepsi plant that brought us to Las Vegas and met us at the specialists office. We met Dr. Jonathan Bernstein, who explained that they have a room for her set up at Sunrise Children's Hospital on the 5th floor for Oncology patients. She will be admitted immediately to get a much needed blood transfusion. He explained briefly what was going on as Mom and Dad listened in SHOCK.....We went over to Sunrise across the street and were admitted to our room.

They gave Leila a blood transfusion and planned for surgery in the morning to insert a port under her left breast that will be the entry way for all treatment in the next 2- 3 yrs of treatment. They also planned on doing a bone marrow aspiration and a spinal tap. They also planned on doing her first chemo treatment into the spine.

Leila was poked many times as they put in IV lines, drew blood and/or couldn't find a vein. She was not allowed to eat/drink after Midnight because of the planned surgery.

Everybody from the nurses and doctors were wonderful in trying to help us deal with this massive shock. Luckily for us, Grandma Kay and Grand Pa Ed were here visiting us from Ohio and were able to keeo an eye on Rami and Deena as Mom and Dad dealt with this circumstance.

Leila's symptoms that led to diagnosis

For several weeks we had noticed some changes that were sporadic in Leila's overall personality and appearance.

• Leila complained about her side hurting underneath her ribcage.
• She had slight bruising on her legs which was unusual.
• Loss of appetite and energy.
• She had a couple of nosebleeds.
• Vomited several different times over a few weeks.
• Sleep walking and night sweats.
• Paleness of skin and face.
• Overall flu like symptoms.
• Developed cold and bad cough with wheezing

These were all mild by themselves, but all together seemed very unlike our Leila. We had an appointment at the pediatricians office on Thursday 4/24/08. He said her spleen was enlarged and her fatigue was most likely caused by Mono. He ordered a complete blood count along with a Mono test and wanted it done that day. We left his office and went straight to the lab for a blood draw. The pediatrician told us to come back on Monday for a follow up visit and hopefully he would have the lab report back by then. Leila was so brave, so we went for ice cream afterwards.