Naomi improves and paints!

Today we received some great news about Naomi's healing process! According to a nurse, her "Platelets are up to 111, Hemoglobin up to 12.1, and Absolute Neutrophil Count up to 800. Her marrow is recovering very nicely"! I'm not sure what all that means exactly, but Naomi's mom tells me that it's all good stuff that means her healing is happening and that she's less prone to infection.

She had another dose of chemotherapy today and is scheduled for her PORT procedure surgery as well as another dose of chemotherapy on Monday.

Naomi is painting just about everyday. Nina says that she's enjoying it tremendously and is doing a great job. She's painting with watercolors and acrylics, on paper and on canvas. For those of us who know Naomi's mom Nina, this is no surprise. Nina was an award winning artist in various mediums as a a child and it appears that Naomi has gotten that trait!

Naomi's parents are considering relocating to the Bay Area. Since it's a fact that Naomi will need treatment for the next 3 years at Stanford, they're coming to terms with the extreme commute from Modesto. If anyone knows of someone looking to sell a home before it goes to market, please let me know and I'll pass the word on to them.

Naomi has a fun day cooking waffles

A professional chef came and taught the children how to make waffles on a Mickey Mouse waffles Iron. At first Naomi didn't want to participate, but gradually the chef won her over:

Naomi cooks


My mom, aunt Debra and I all went to visit Naomi after having visited my aunt Lorraine in another hospital. She had what appears to have been a stroke, but the doctors aren't sure. Please pray for her too.

Naomi had good energy and was affectionate during our visit after she finished her cooking class. The chemo drugs can make the children irritable and anti-social, so it's always a blessing to experience Naomi as she normally is. The effects of the chemo drugs are starting to become obvious in other ways: her face is swelling and her hair is thinning. As these things happen to her, I will only publish photos of Naomi with her and her parent's permission. But I will continue to write about Naomi as she progresses through her healing process. Thank you all again for your compassion, prayers and love. I am ever humbled by and grateful to you all!

0% Leukemia!

On Monday, May 15, 2006, Naomi had a bone marrow test and a biopsy. The procedure was fast, and she came through easily. The results came in very quickly, and the doctors told us that Naomi now has 0% Leukemia in her bone marrow! The blood cells are very young, early stage new blood cells, and currently these blood cells have no leukemia. At her original diagnosis, on April 27, 2006, Naomi was 94% Leukemic. At her next bone marrow test, taken after the start of chemotherapy, Naomi was 46% leukemic. Now she's 0% leukemic! The doctors are now waiting to see if the new blood cells develop into mature blood cells which will remain non-leukemic. If she remains at 0% until the next bone marrow test, Naomi will be officially declared in remission.

On May 29, 2006, Naomi will undergo another surgical procedure. This will be to insert a PORT Line into Naomi's chest. Children with cancer often need frequent IV (Intraveneous) medications, fluids, transfusion and/or blood tests. As opposed to pricking the each several times per day for these treatments and procedures, some children benefit from a more permanent type of IV line. The PORT line is this type.

The port is a small flexible tube that tunnels under the skin into the neck and enters a large vein near the heart. A surgeon places the port when the patient is under general anesthesia. Instead of exiting through the skin, the tube connects to a small, round quarter-sized chamber that rests just under the skin. The port chamber is about one-half inch thick. To access the port, a special needle is used to puncture through the skin and the top of the port, allowing IV medicine to then be given and/or blood samples taken. This needle is changed once a week. You may apply a topical anesthetic to the skin one hour before the needle is placed in order to decrease any discomfort when the skin is punctured. The needle is removed when IV access is not needed. The port can be felt through the skin but is not seen. It does not need a bandage (dressing) and needs no special care when the needle is out.

The family would love visitors if anyone has free time. Just call ahead, and please don't come if you have a cold, fever, flu or anything else that could affect Naomi's compromised immune system. And if you happen to bring a meal with you, all the better! : )

Tough day for Naomi

Yesterday was a tough day for Naomi. She was complaining about having a hard time going to the bathroom. So, assuming it was a bladder infection, the doctors inserted a catheter. As it turned out, Naomi didn't have an infection, which is good, but to have dealt with the pain of the catheter! Poor baby! And then on top of that, while the nurse was cleaning her PICC line tube (a surgically implanted line that goes from her upper arm to her heart for taking blood samples and giving chemo drugs - see this PICC Line article) was accidentally pulled out about 5 cm because Naomi jerked her arm while laying on the table. Now she has to have another surgical procedure to reinsert the PICC Line. Ugh! We were going to try and take Nina and my mom to an area restaurant for Mother's Day, but now we don't know if we can. At least it wasn't a bladder infection, so Naomi doesn't have to worry about being confined to the hospital again.

In any case, she looks better lately. I spent Thursday afternoon with her and her normal color is back and she seems to have grown slightly (maybe that's my imagination! lol) And she says she feels better. She's such a little trooper...

Test results yield great news!

Naomi's parents met with the nurse practitioner this morning and it's all good news! God has blessed Naomi!

1) Naomi's blood counts are way up. Her hemoglobin is at 14.6, which means she does NOT need another blood transfusion.
2) Her platelets are average, but better than they were at her last transfusion.
3) Her white blood count is up.
4) Her neutroblasts are 492.7, which means she has a lower chance for infection. Normal is over 1,500. She was at 240 at diagnosis.
5) Her bone marrow test revealed that her blast (immature white blood cells) percentage is down from 94% to 46%. Normal is less than 5%. The doctors were hoping for a single digit percentage of blasts in her bone marrow. But it's significantly better.
6) MOST IMPORANTLY, the chromosome test from St. Jude's Children's Hospital came in. According to that test Naomi is officially categorized as low risk for a Leukemia relapse! The base line number for low risk needs to be over 50, and Naomi is 204!

Thanks to these positive results, Naomi can go home for a few days! She returns to the hospital again on Friday for more blood tests. This coming Monday she will have another spinal tap and bone marrow test to see if there has been any further improvement.

Thank you to everyone for all your prayers!

Naomi on 5/4/06

Naomi feels better!

Naomi peek-a-boo

Naomi has a good day

Yesterday, I went to visit with Naomi and her family. For the first time in several weeks, she seemed like her usual self! She was sweet, chatty, affectionate and loving. She held my hands, gave me kisses and hugs, sat on my lap as she colored in her Dora the Explorer coloring book. We sat outside in the gorgeous sunshine filled day and spent some wonderful quality time together. Her brother, Jeremiah, ran around the play yard while Naomi and I sat, making us laugh at his hilarious antics. I don't know who had a better time! Me or the kids!

Chemo gets harsher

Naomi had her 4th blood transfusion yesterday, and she also had a 2nd vincristine injection. This is the medicine that will cause her hair to thin and her jaw to hurt. Thank you for all of your prayers!

Photos of Naomi

Check out these photos of Naomi, her brother and her parents. She's obviously feeling much better! Thank you for your prayers!

Photos of Naomi

Vitals and 2nd Spinal Tap

As of Wednesday, May 3, 2006, Naomi was taken off of the heart monitor because her vitals signs (heart rate, oxygen intake, blood pressure, etc.) were considered to be within normal range again. She had another spinal tap yesterday, May 5, 2006, in order to deliver a particular dose of chemotherapy. She had an easier time with the anesthesia with this procedure. God is answering prayers!

The family got housing!

Thank you so much for your prayers! It's all taken care of now!

Family needs housing

Nina and Jermaine are looking for housing for the month of May. Naomi's doctors have decided that Naomi should be kept at Stanford for the entire first month of her chemotherapy. Since Naomi will be kept in the hospital, they will need housing close to the Stanford campus. Ideally, it will be furnished and close enough for easy access to the hospital. They've already been put on the list at Ronald McDonald house, but there is no room at the moment. Please pass along this message and let me know if you know of any options for them. Thank you!

Insertion of the PICC line

Naomi was supposed to go into surgery for insertion of a PICC line this morning at 11am, but they discovered that she will first need a plalette blood transfusion before they can begin.

Both the transfusion and PICC line insertion went well (after some trouble - the doctors attempted to find a good vein 4 times), but the steroids in the chemo drugs have caused her heart rate to go down to a level that causes the doctors concern. Normal for a 3 year old would be over 120 BPM. During the PICC line insertion, her heart rate dropped to 48 BPM, causing the surgery to last 3 hours.

Currently her heart is stabilizing around 65 BPM, but unless her body moderates itself to a more normal heart rate, she may have to receive cardiac and high blood presure medication in addition to the chemotherapy. Naomi is already suffering side effects from the chemotherapy. She has several sores in her mouth, making it very painful to eat.

Please keep praying for Naomi

Help the family

If you would like to help the parents defray the costs associated with Naomi's hospital stay which are not covered by insurance (long distance travel to and from the hospital, eating, etc), feel free to send gift cards and certificates Naomi's parents are both extremely stressed and could use gift cards from local grocery stores:

Andronicos is across the street from the hospital, but very pricey; Trader Joe's and Safeway are a short drive away and more cost effective.

They can also use coupons for local restaurants, gas cards, etc. They will be very grateful! Please contact me for details: Victoria

Video Messages for Naomi

Message from Mama & Jeremiah

Message from Grandpa

Message from Grandma

Message from Mama Lita

Message from Papa

Message from Victoria

Message from Tiffany

Message from Loraine

Message from Clinton

Message from Debra

Message from William

Message from Carla

Message from Torri

Message from Maisha

Message from Maurice

Message from Rosalyn

Message from Eric (and Papa)

Message from Shionda

Message from Ron & Maggie

Message from Sabrina

Message from Blaique

Message from Dr. Tibur

Message from Nurse Sam

Message from Jeremiah

Naomi talks about Dora

Naomi's diagnosis

Hello friends,

I have created this blog to track the progress of my niece's healing. Her name is Naomi and she is 3 years old.

THE DISEASE
On Friday, April 28, 2006, doctor's confirmed that Naomi has Acute Lymphoblastic Leukemia (ALL). ALL is the most common form of cancer in children. It is a disease in which there is an uncontrolled production of abnormal white blood cells, called lymphoblasts (or blasts). These blasts crowd out the normal cells in the bone marrow and spread into the blood stream and sometimes to other parts of the body.

For the past several months, Naomi had been complaining about her legs hurting. No one had any idea that it was more than "growing pains", a cry for attention, or some other equally innocuous ailment. Her parents had taken her to see her pediatrician several times, but nothing was ever discovered. She was given all manner of tests for broken bones, strained muscles, etc., but no one suspected it was anything more. However, over the course of the last 2 weeks, we'd all noticed that she was consistently cranky, whined nearly constantly, and that her coloring was significantly paler than normal. On Tuesday, April 25, she began complaining of pain to an even greater degree. By Thursday morning, April 27, she could not walk and was rushed to the emergency room. At this point, doctors took additional blood tests which yielded results which were very different from all the previous testing and it was decided that she should be immediately admitted to Stanford.

The treatment of ALL consists of several phases, all of which are very important. In the first phase (called Induction) treatment is given to remove all visible signs of leukemia so that normal blood cells can return. In the middle phases (Consolidation, Interim Maintenance, and Delayed Intensification) treatment is given to remove any of the remaining leukemia cells. In the final phase (Maintenance), treatment is given to keep the leukemia from coming back (remission).

Disease remission is when al of the leukemia seems to have disappeared. About 80-90% of children are usually cured of ALL, however if the cancer comes back (relapse), there is less chance for a cure.

Because of her age, the number of blasts she currently has in her blood and the type of leukemia, Naomi is considered low to standard risk, which means her chances for a full recovery are high. At then end of Induction therapy (the first phase), her risk for relapse will be determined, depending upon her response to treatment. The fact that there is no leukemia present in her spinal fluid gives additional hope for a full recovery.

The chemotherapy drugs used cause unwanted side effects, including: nausea, vomiting, hair loss and low blood cell counts (which can cause Naomi to feel tired and weak, not be able to fight off infections, and bleed or bruise easily). The side effects are usually reversible when the medications are stopped.

Naomi will receive treatment for the next 3 years. She started chemotherapy this morning. Within 2 hours after her first treatment today, she began walking around and acting like herself! (Well, she is a little cranky, but that's understandable). In any case, it seems like a small miracle...the first of many, I'm sure!

Here are some articles about the disease:

Acute Lymphoblastic Leukemia (ALL)
The Leukemia & Lymphoma Society

NAOMI


Naomi was born on the birthday of my grandmother, Mary Alice: 11/7/02. Mary Alice passed away on 6/19/02, and as an homage, Naomi was given Mary Alice as her middle names. In many ways, Naomi reminds us all of her great-grandmother: she's very petite, but strong willed; exceptionally bright and loving. Naomi is a beautiful little girl and we all look forward to watching her blossom into a beautiful woman.

Naomi's favorite color is pink. She is a HUGE fan of Dora the Explorer, loves to play with dogs, bubbles and her toys, and is crazy about her big brother Jeremiah. She loves to visit the Exploratorium and enjoys hands on kids activities. She knows that she is a PRINCESS!

Her parents, Nina and Jermaine, are wonderful and focused on providing her the best treatment and care possible. I'm very proud of them both for their rapid response and absolute insistence that Naomi be cared for by only the top medical professionals available. The medical staff at Lucile Packard Children's Hospital have been exemplary. I am fully confident that they have Naomi's healing and full recovery as their goal.

YOU
Naomi has received hundreds of messages of prayer, well wishes and positive energy. The response has been tremendous and incredibly humbling. I thank each and every one of you for your kindness, consideration, compassion and love. Please continue to keep Naomi in your thoughts and prayers, and feel free to check in on this blog anytime you'd like for updates on her healing journey. I have complete faith that she will once again be the healthy, happy, vibrant Naomi we all know and love!

Thankfully, Naomi's treatment is being covered by Jermaine's insurance (at least up to $1 Million...hopefully the treatment won't go higher than that, but it could). But if you would like to donate to Leukemia research, please follow the links below:

Make a charitable donation
Donate Blood
Join the Bone Marrow Registry

Thank you from the bottom of my heart. God bless you all!

Victoria