Tuesday, December 29, 2009

Day 21 - Interim Maintenance

December 28, 2009 to January 3, 2010

Alisha made count with flying colors, so she was able to receive her scheduled chemotherapy on Monday and Peg-Asparaginase (two intramuscular shots on the thighs) on Tuesday. Her white blood cell count is slowly headed towards the normal range and no blood tranfusion was needed, which was a blessing!

Alisha constantly asks if her white blood cell count is back to the normal range, can she play at the park without her mask on? It was explained that both her white blood cell count and ANC will need to be in an acceptable range before her mask comes off. She's been a real trooper wearing the mask if she's outside and sanitizing her hands over a dozen times a day. She realizes that it pays to be super paranoid at this time in order to avoid catching germs.

Christmas

December 21 to 27, 2009

Christmas was greatly anticipated by the girls and they made certain that Santa had plenty of cookies and a glass of milk. Both of them kept on asking how Santa Claus fit through the chimney along with the toys and were happy that he finished the cookies and the milk. Santa brought a wooden cooking kitchen, Princess cashier box, books, Wii Guitar Hero 5 (not sure if it's more for the adult), globe, SpongeBob Squarepants legos, Ariel doll, DVD cartoons, etc.

Generous donors and volunteers from Miracles 4 Kids delivered a gift basket (more like boxes of food) filled with turkey, chicken, clam chowder, produce and a huge bag of toys. Alisha wanted to turn around and donate those toys to the less fortunate children since she claims that she already has plenty of toys.

Wish everyone had a wonderful Christmas!!!

Wednesday, December 16, 2009

Make-A-Wish Events

December 14 to 20, 2009

The highlight this week included various events hosted by Make-A-Wish ranging from a holiday harbor cruise, breakfast with Santa and a visit to Santa Ana Zoo, which are designed exclusively for children with terminal illnesses. Both of the girls enjoyed the cruise and seeing Santa arrive on a patrol boat was one of the highlights. Each of the Wish Children had a personalized Christmas gift and they were individually called up to take photos with Santa Claus. After Alisha received her present, we immediately went up another deck, but Ashley did not want to leave the 2nd deck in case they called her name to receive a present. Luckily, Make-a-Wish ensures that siblings of the Wish Child is also included, so the sibling received either a Barbie doll or Hot Wheels, which made Ashley's day. The warm chocolate drink with marshmallows on top and the carolers were a huge hit.

Santa's Village at South Coast Plaza was a fantastic event as well. The girls rode the reindeer carousel until they were content and Alisha kept on running back to take photos with Santa Claus. After breakfast, the girls were kept busy at the crafts table.

The Santa Ana Zoo was well decorated and the girls kept busy riding the fancy carousel, which had a seahorse, hummingbird, panda, various horses, etc. After a light dinner (hot cocoa with marshmallows were available again), photos w/ Santa Claus, they drew, walked the maze, met some strange animals, worked on crafts, rode on the train and picked out a toy. The girls didn't want to leave, so they lingered around the play structure until it was too cold outside.

Tuesday, December 8, 2009

Interim Maintenance

December 7 to 13, 2009

Alisha made count and started her Interim Maintenance phase on the 7th. Last Friday, she did not meet the required blood counts in order to move forward with the procedure this Monday. However, we pleaded to keep the appointment to see if she would actually meet the minimum blood count on Monday. The nurse last Friday was very hesitant and was certain that Alisha will not make count by Monday and urged us to take a Wednesday appointment instead.

On Monday, the nurse practitioner who performed the procedure said it's very unusual that patients recover so quickly in such short amount of time. Thank you all for your continued blessings and prayers to make the impossible a possibility. The importance of this phase is that it marks the first day of the rest of her two-year treatment as far as we understand it. Technically, December 6, 2011 should be the last day of her treatment, but we shall see if everything works out that way. We are hoping that there will not be further delays.

Whenever Alisha has a free moment, she enjoys taking pictures...look above for a picture she took of herself as well as drawing and painting.

Tuesday, December 1, 2009

Presents from Santa already?

November 30 to December 6, 2009

Alisha will be entering the next phase of treatment (Interim Maintenance), which will last 56 days. Interim Maintenance will begin on Monday, December 7th if she makes her platelet count as well as the Absolute Neutrophil Count (ANC). During this phase, she will be getting an increasing dose of IV Methotrexate every 10 days, which unfortunately causes mouth sores in a large percentage of patients along with various other chemo drugs.

Every morning, Alisha rushes downstairs and counts the number of presents under the tree and tries to sway her Mom in letting her open up presents. She also asked why Santa brought her and Ashley's presents early...Santa is busy and starts present deliveries early; however, presents will be taken away if they become naughty. Alisha proceeded to ask if Santa can "deliver a lot of food to the starving children in Africa" as presents for those unfortunate kids. She is quite compassionate and has regularly donated books and toys to non-profit organizations or the hospital.

Wednesday, November 25, 2009

Low Platelets

November 23 to 29, 2009

Vomiting issues have subsided greatly in the past few weeks with her maternal grandfather's advice of drinking a cup of hot water in the morning to keep the stomach warm while suppressing the nausea. However, her platelets and red blood cell counts tested extremely low. As a result, another blood transfusion was administered on Monday. Platelets were not transfused since the oncology pediatrician wanted to wait and see if it will recover on its own. So we have to be on the look out for petechiae and prevent her from engaging in activities that might cause her to bruise easily.

Alisha picked up cross-stitching and started on a challenging pattern involving desserts and played a little tennis during the week. When she has a quiet moment or while she listens to the Phantom of the Opera (did not know that she could reach high-pitched notes as she immulates Sarah Brightman singing as Christine Daae), she continues to read her Magic Tree House series, keeps up with school, Chinese and abacus homework and focuses on counting down to Thanksgiving and Christmas. The highlight this week other than celebrating Thanksgiving was setting up and decorating the Christmas tree. Alisha loves holidays and reading about how different cultures celebrate this time of the year.

Tuesday, November 24, 2009

Two-Long Weeks

November 9 - 22, 2009

Alisha began her second round of the 4-day a week chemotherapy for two weeks with an 8-hour treatment on the first day. Her appetite has dropped dramatically so as her weight. The first round of the 4-day a week for two weeks last month took a toll and was quite unpleasant, so we entered this second round with much trepidation. Luckily, Alisha vomited only twice and kept busy with her latest Lego creation, which included an ice cream/barbecue equipment next to the 3-level condo. As for food, there's no strong interest to eat and the motivation to feel better started to slip.


Coupled with her less than stellar desire to eat, her eyesight started to slip where she had to have glasses. The optometrist mentioned that her agressive decline in eyesight may be caused by the chemotherapy. Alisha wanted to stay fashion forward, so she picked a Disney princess frame with a cute glasses carrying case.

Toothless Again

November 2 to 8, 2009

Dressing up for Halloween and a few quick visits for candies exhausted her immensely, but the process was full of excitement nonetheless. She had another lumbar puncture on Monday and will not need another one until a month later - yeah! Alisha lost another tooth on the top and couldn't wait for the tooth fairy to visit. We've often tried to tease her by asking her to pronounce words with "th" in it; however, the gaping space isn't hindering her speech. On the days that she feels upbeat, she doesn't hesitate about diving for the Wii remote to start her bowling and boxing matches. Lately, her Wii collection was added with the Disney Princess, Build-a-Bear and Beach Resort sports games, including frisbee, rowing, archery, etc.

Monday, November 2, 2009

Food Choices

October 26 to November 1, 2009

Hello to all. Sorry it has taken so long to up date Alisha's blog. The past few weeks have been hectic to say the least.

The weekly procedures (stabs on the spine) were getting on Alisha's nerves (pardon the p
un). She has grown very aware of her condition, the drugs used and procedures conducted. Needless to say, she vehemently hates "procedures" and having to be put to sleep, squeezed during the process and poked on the spine (more if the doctor is having a hard time).
The only time she vomited this week was the mornings after eating certain types of food. We're starting to see the correlation between diet and vomiting. This will make her a lot more comfortable for the future. Alisha decided to revert back to her old custom of a butterfly she wore 2 years ago for Halloween. She looked forward to this event so much that she even made a diorama
with pumpkins, ghosts, goblins, etc.

Not So Lucky

October 19 to 25, 2009

Alisha experienced nausea and vomiting several times a day along w/ massive headaches for the first time since the beginning of chemotherapy. She lost her appetite, laid down or slept for most of the day. The CT scan on Thursday did not help; however, she didn't need to drink the awful white contrast liquid for 1 hour prior to the CT scan since she couldn't hold anything down. The doctors thought she might have contracted meningitis, but quickly ruled that out b/c she had no fevers. After various prodding and poking from the doctors and nurses, nobody could explain her intermittent painful headaches and episodes of vomiting. Luckily, she was back to her old self by Friday and we didn't have to guess the cause! Alisha is not too keen on her new wig that arrived this week. She reluctantly tried it on while telling us that she will not ever need it - we're all hopeful of a miracle.

Wii

October 6 to 18, 2009

Alisha went in for lab work on 10/8 to determine whether she made count to start her next phase of chemotherapy for 56 days (consolidation) on 10/9. Unfortunately, her platelets and Absolute Neutrophil Count (ANC) were too low. ANC is a way for doctors to scientifically determine the stage that the immune system is in after response to chemotherapy. ANC is the real or actual number of white blood cells that a patient has to fight an infection. The nurse delivering the blood results was skeptical about her making count on Monday, 10/12; however, Alisha made count w/ flying colors. The first, second, five and sixth weeks of consolidation consisted of four days of chemotherapy followed by three days of rest. Alisha went through the week of 10/12, unscathed. Alisha
was also in great spirits taking time to play a little Wii. As a little incentive, we took some pictures at the gazebo at St. Regis, Dana Point.

Tuesday, October 6, 2009

Dramatic Turn Around

September 29 - October 5, 2009

Alisha's disposition has changed dramatically. She's back to her jovial self. Her appetite, unfortunately, did not diminish despite the cessation of the steroids two weeks ago. Within one week, her platlets went from extremely low, to the point of needing transfusions, to the higher end of the normal range. We are all thrilled at the spectacular rate that she's recovering, and hope she will continue down this road with her red and white blood cells.

Last Friday, she had an LP (Lumbar Puncture) and BM (Bone Marrow) aspiration, and we are eagerly awaiting for the results of both. These results will determine her road map for the following month.

Alisha's in-home school teacher is trying to keep her challenged with more advanced math and reading.

Lately Alisha has become mesmerized by recipes, cookbooks, and the Food Channel. She often sits for hours going from one page to the next reading every ingredient, and the directions. She has picked a few interesting recipes, and we have successfully experimented with a few over the weekend, including a tomato basil sauce for pastas and salads as well as a sunny side dressing. all of these recipes are raw or vegan. It was a challenge getting Alisha to embrace this diet at first, but she has slowly come around.

Monday, September 28, 2009

First Week At Home

September 22 - 28, 2009

Alisha's first week home went relatively well. The only snag happened early last week was when Ashley caught herself a bug from school. As a precaution the girls were kept separated, and within a couple of days Ashley was back to normal. Alisha has been responding very well to all treatment, medicines, etc. Everyone has been getting into their roles of assisting her quite nicely, and quite effectively. Alisha definitely has a very good and strong support system.

On Friday September 25, 2009 She had another chemo treatment. To date she has not had any of the nausea that often accompanies it.

Today, September 28, 2009, she started home school and thoroughly enjoyed it!

Alisha's new diet seems to being a good part in increasing her energy levels. Though she isn't always keen on the taste.

Alisha at times seems to be acting just as she did prior to falling ill. She is back to coloring and reading for hours.

Monday, September 21, 2009

Good News

September 21, 2009

Today is the day! After 22 days at Children's Hospital of Orange County Alisha was finally released!!

On top of that her Blast count was 2%. What does that mean you ask? The aim is to induce a lasting remission, defined as the absence of detectable cancer cells in the body (usually less than 5% blast cells on the bone marrow). This, however, does not mean the treatments stop. She is still looking at about two and a half years of treatments.

Sunday, September 20, 2009

New Pictures

September 20, 2009


Here are some recent pictures of Alisha!






The puzzle was worked on over a period of four days.









The soccer balls were signed by David Beckham on Tuesday.





The other pictures are just a fraction of the many gifts Alisha has received. ALL gifts are appreciated, and are being enjoyed by Alisha.


A Missing Tooth

September 19, 2009

Today was a good day for Alisha. During the night her temperature returned to normal. If her temperature remains normal through Monday morning she could be sent home!

She was more talkative, and expressive today. She actually laughed a couple times while watching The Lion King.

During breakfast one of Alisha's top front teeth fell out, and her other one is loose. The teeth being loose and/or falling out have nothing to do with any of her medications.

Saturday, September 19, 2009

Round 3

September 18, 2009

Well today was round three for the chemo. Alisha was placed back on her I.V. as she had a fever. This fever has caused her to be placed in isolation until all blood cultures come back "negative."

Wednesday, September 16, 2009

Blasts

September 16, 2009

Today Alisha's CT Scan showed lesions in her kidneys. The Doctor says this is normal and it should clear up with the aid of anti-fungal medication. The bone marrow biopsy results show blasts at 24%. Blasts (premature white blood cells (leukemia cells)) showing under 5% would be considered "in remission."

Alisha was thrilled that she had her i.v. removed today as she gained more range of movement.


On the lighter side, Alisha has been diligently working on a 550 piece puzzle of a cheeseburger. Alisha has commented that she does not want to go home because she likes hospital food.

Celebrities

September 15, 2009

Alisha was visited by several famous celebrities today, which included Ryan Seacrest who hosted KIIS FM from CHOC this morning, David Beckham, Shakira - didn't get a picture w/ her :(, Miss California USA, Kellie Pickler, Justin Bieber, David Henrie from Wizards of Waverly Place, Tiffany Thorton from Disney Channel Show Jonas, Rhianne Thorton from Legally Blonde The Musical, Cast from Fame, etc. Every patient at CHOC were given a bear from build-a-bear, donated toys, prizes from Chik-fil-a and various activities from sponsors for Radio Lollipop (radio station at CHOC). In between the celebrity hype, Alisha had a CT scan of the sinus and chest since the doctor was concerned about infections from two hours of fever last Sunday. The scan came back clear of any possible infections - parents still know their child the best.







CT Scan

September 14, 2009

Doctor estimates her discharge date to be this Thursday. This was delayed as a result of a 2-hour fever on Sunday evening. A CT scan was ordered right before lunch was served and Alisha was asked to fast for 4 more hours. I could not see my child go hungry again for over 10 hours with hardly any breakfast, having to drink this awful liquid for the CT and suffer the charming side effects of steroid - enhanced appetite and amped up grouchiness. After countless hours of discussions and to the chagrin of the doctor and nurses, Alisha didn't have to fast and drink the foul-tasting liquid before the CT scan and it was postponed until tomorrow.

Abdomin

September 13, 2009

Abdominal distention was the highlight today. With the LP and bone marrow, Alisha couldn't have food and water for over 15 hours on Friday, 9/11. As a result, plumbing was a bit backed up causing discomfort in the tummy.

Immune

September 12, 2009

Since her immunity was so low, one of the other side effects from chemo is mouth, tongue and throat sores - mucositis. Antibiotics were given to prevent further mouth sores, but the existing ones were a bear. Alisha had a liquid diet to get through this rough time.

Friday, September 11, 2009

Round 2

Friday September 11, 2009

Today is to be Alisha's second round of chemo. Along with that she is to undergo another LP (spinal tap), and she is to have a bone marrow biopsy to determine the Minimal Residual Disease (MRD). This determines how many bad white blood cells are still present.

Assistance

September 10, 2009

Alisha's family is very thankful and appreciative for the of the outpouring of support, prayers, and gifts, as well as the offers to prepare meals, run errands, pick up school work for Alisha, and help in taking care of Ashley.

Today a social worker came by with some order forms for a wig for Alisha. Since Alisha does not know about the hair loss side effect. Amy picked out a wig and cap for her. Depending on her preference Alisha's wig can be made from either her own hair or that of her Mom's.

There have been several individuals who have volunteered to shave there hair when Alisha starts to lose hers.

Alisha was told by the Oncologist that if she does not start walking she will have to remain in the hospital. Her wheel chair will be taken away tomorrow (Friday September 11, 2009).

Alisha does have some stomach distension due from the steroid Decadron.

She received a transfusion of another bag of blood platelets to ensure a count of over 75,000 is reached before the second round of chemo and procedures.

Thursday, September 10, 2009

Picture Time



Wednesday, September 9, 2009

More Meds

Wednesday, September 9, 2009

Today Alisha will be receiving two intramuscular shots. One to each thigh. The medicine is called asparaginase (PEG).

Asparaginase (EC 3.5.1.1) is an enzyme that catalyzes the hydrolysis of asparagine to aspartic acid. It is marketed under the brand name Elspar, to treat acute lymphoblastic leukemia (ALL) and is also used in some mast cell tumor protocols. Unlike other chemotherapy agents, it can be given as an intramuscular, subcutaneous, or intravenous injection without fear of tissue irritation.

The rationale behind asparaginase is that it takes advantage of the fact that ALL leukemic cells are unable to synthesize the non-essential amino acid asparagine whereas normal cells are able to make their own asparagine, thus leukemic cells require high amount of asparagine. These leukemic cells depend on circulating asparagine. Asparaginase however catalyzes the conversion of L-asparagine toaspartic acid and ammonia. This deprives the leukemic cell of circulating asparagine.

Alisha was moved out of the isolation part of the OICU. She now has a roommate. There is also a good chance that she will be going home Saturday September 12, 2009.

Side Effects

Tuesday September 8, 2009

Alisha had a couple of problems today. Her blood pressure was elevated, and she had a blood sugar count of 237. These are both common side effects of the steroids she is on.

On a positive note, she started school in the hospital.

Monday, September 7, 2009

A Laugh


Sunday September 6, 2009

Today was probabaly the best day of this whole ordeal. For the first time in a week Alisha smiled and laughed when she heard some of her favorite music. She also colored, engaged in some crafts, and played with legos.

She had slight pain in her legs. This is common with this type of disease.

Peaceful Day


Saturday September 5, 2009

Alisha was feeling much more comfortable as the chemo from last night and Thursday had pushed the WBC count down. After her shower she watched countless hours of Sponge Bob Square Pants.

Alisha made no complaints of her spine or pelvis hurting. She was complaining of pain where the Port-a-Cath was inserted.

Port-A-Cath

Friday September 4, 2009

Today they placed the Port-A-Cath in Alisha at 3:30 p.m. The procedure took one hour. Because of her having to have this done Alisha went 18 hours of no food and water even though steroids were given to enhance her appetite.

The Port-A-Cath is inserted just under the skin in the upper left side of the chest. The tube is then inserted in to the aorta. This allows the medical staff to draw blood, give meds, etc from one area. While in the hospital Alisha will no longer be poked for samples as all of it will be done from her current I.V. lines.



Alisha's pain started to subside today due to Thursday's chemo.

This evening she received a full scale chemo treatment.

Spinal Tap

Thursday September 3, 2009

Alisha underwent a lumbar puncture (LP) also known as a spinal tap. The reason for the LP was to see if there were any cancer cells in her Central Nervous System (CNS). The LP showed that Alisha is CNS Negative (CNS -).

Even though Alisha is CNS neg. cytarabine (type of chemo) was given to kill possible white blood cells (WBC) hidden in the CNS just as a precaution.

She also had her abdomen scanned since she was retaining a lot of water and her tummy was sticking out due to gas from mouth breathing.

Her spine and hips were still causing her great pain making it difficult for her to walk.

Transfusion

Wednesday September 2, 2009

Today Alisha underwent a blood transfusion. The reason for this was to increase her red cell count and her platelets for Thursday's Lumbar Puncture (spinal tap).

Alisha was still in constant pain in the spine and pelvic area.

More Blood Tests

Tuesday September 1, 2009

Alisha underwent a series of blood tests. It seemed an endless parade of phlebotomists!

Alisha was in almost constant pain centralized around her spine and pelvis.

General Information About Childhood Acute Lymphoblastic Leukemia

Definition

Acute Lymphocytic Leukemia (ALL) is a type of cancer of the blood and bone marrow — the spongy tissue inside bones where blood cells are made.

The word "acute" in acute lymphocytic leukemia comes from the fact that the disease progresses rapidly and affects immature blood cells, rather than mature ones. The "lymphocytic" in acute lymphocytic leukemia refers to the white blood cells called lymphocytes, which ALL affects. Acute lymphocytic leukemia is also known as acute lymphoblastic leukemia and acute childhood leukemia.

Acute lymphocytic leukemia is the most common type of cancer in children, and treatments result in a good chance for a cure. Acute lymphocytic leukemia can also occur in adults, though the prognosis is not as optimistic.

Causes

Acute Lymphocytic Leukemia occurs when a bone marrow cell develops errors in its DNA. The errors tell the cell to continue growing and dividing, when a healthy cell would normally die. When this happens, blood cell production goes awry. The bone marrow produces immature cells that develop into leukemic white blood cells called lymphoblasts. These abnormal cells are unable to function properly, and they can build up and crowd out healthy cells.

It's not clear what causes the DNA mutations that can lead to acute lymphocytic leukemia. But doctors have found that most cases of acute lymphocytic leukemia aren't inherited.

Diagnosis

Monday August 31, 2009

Amy took Alisha to Children's Hospital of Orange County (CHOC) on the advise of her pediatrician. In the emergency room, a battery of tests were run to include urinalysis, blood, and chest x-rays.

The blood work came back as positive for Leukemia. Later it was pinpointed as Acute Lymphoblastic Leukemia, Pre-B.

She was then transferred to the Pediatric Intensive Care Unit (PICU) where she remained overnight. She was then transferred to the Oncology Intensive Care Unit (OICU). On Thursday September 3, 2009 at 2:00 p.m. she was transferred to the Restrictive wing of the OICU where she is currently at. This section is on complete lock down, and has a 2 to 1 nurse to patient ratio.

Hello


Good day to all who read this. This blog will be used to update everyone on Alisha's illness and progress in her road to recovery! Her family greatly appreciates your prayers, well wishes, and support.