Naomi is severly neutropenic

Hello friends,

Naomi's got the flu, but is on anti-biotics to fight it. Her blood count is down to a dangerously low 10, yes TEN, at the moment (see this previous blog for details on ANC: http://naomiheal.blogspot.com/2007/02/naomi-update.html and this wiki on Neutropenia: http://en.wikipedia.org/wiki/Neutropenia). It essentially means that her body has no ability to fight off infections. Please continue to pray for her, specifically that her ANC rises above 500 so that her chemotherapy treatments can resume. 500 is the minimum for her to receive chemotherapy. 2,000 is normal.

Although Naomi appears to be healthy (she's eating decently, has good energy, and isn't coughing or sneezing much), the fact is that exposure to the slightest infection could be serious. Please refrain from any visiting at this time. She can not be exposed to any type of infectious droplets from other people.

Thank you and bless you all!

Victoria

Real Life Fitness Test

I recently had an opportunity to test my level of fitness in a real life context. On Monday, March 12, Naomi was scheduled to have a chemotherapy session. Since I had the day off, I decided to accompany Naomi and her mother (my sister) Nina to the appointment. I needed to be on campus anyway to take care of some business on the other side of the campus. After Naomi was admitted, I left to take care of my business. I walked about a mile to the other side of the campus (at least I think it was a mile...it took about 20 minutes walking at a brisk pace), had my appointment, and then walked back to the hospital. While I was returning, Nina called me and asked me to meet them in front of Neiman Marcus at the Stanford Mall so we could go find breakfast. Naomi's IV had been inserted, and we had time to burn while waiting for the blood tests that would confirm if she was healthy enough to receive chemotherapy that day. Once I met up with them, I noticed that Naomi's hand was covered with blood. Apparently, something was wrong with how her IV had been inserted and blood was leaking. Nina decided that we needed to rush Naomi back to the hospital, which was about 1/4 mile away. Unfortunately, I'd been suffering from the flu, and absolutely didn't want to expose my germs to Naomi (I'd been wearing a mask around her). So, in order to get Naomi back to the hospital as quickly as possible, I decided to hand my purse and jacket to Nina, slung Naomi onto my back and sprinted as quickly as I could back to the hospital just in case the bleeding was as bad as it looked.

I held onto Naomi's legs and instructed her to use the non-injured arm to wrap my neck so she could hold on and off we went. I can honestly say that despite the compromised respiratory system (cough & sinus infection), having already walked around 2 miles, running with a 35 lb child on my back, (and oh, did I mention that I hadn't eaten anything at all that morning?), I arrived at the clinic without being winded at all! I was covered, and I mean covered, in sweat, but my breathing was not excessively heavy, and I was able to talk to the nurses as they addressed the bleeding (it looked much worse than it was). Thanks to Mani, Steven and Maya at Ice Chamber Athletic Performance Training for pushing me to my limit every week. At least I know now that if needed, I can rise to the occasion!

Naomi had her chemotherapy and has been healthy enough to attend preschool and play with some friends! Hallelujah! : >

Naomi's aunt,

Victoria

Removal of the PORT Catheter

Naomi had surgery today to remove the PORT catheter from her chest. I went with Naomi and Nina, her mom, to the hospital. We arrived at 7am, where the staff was waiting for us. The anesthesiologists offered Naomi a mask which had been imbued with a watermelon scent, so that she could be sedated without needle pricking. Naomi was very pleased with that. The doctors took Naomi into the OR and completed the procedure with no problems! Naomi slept for just under 30 minutes after the procedure. Nurses on staff took various measurements of Naomi's vital signs and granted their approval for her to be discharged. Naomi spent the rest of her day hanging out with me and her mom, full of the usual spunk and energy you'd expect from a healthy 4 year old. It was a beautiful sight!

Victoria

Naomi going into surgery on Monday 2/26/07

On Monday Feb. 12 , during what should have been a “regular” chemo visit, Naomi’s PORT Catheter began to leaking into her Left Shoulder, causing her tremendous pain. The PORT Catheter, or central line, is a catheter placed in a large vein that supplies the circulatory system. A central line is needed for insertion of medications and blood products, and to provide a site where blood samples can be easily taken without pain to the child. Since Naomi’s PORT has begun leaking, it is no longer functional for her remaining 20 months of chemotherapy. Her doctors have scheduled the Line to be removed from her chest on February 26th. Please keep all of us in prayer at this time.

Thank you,

Nina

Naomi update

Naomi’s ANC (white blood count) has been rather low again for the past 3 weeks. In order to receive her standard dosage of chemotherapy, her ANC must be over 750, however Naomi’s ANC has been hovering around 500, which means her immune system is badly suppressed and could be easily compromised if exposed to illness, viruses, etc. Rather than skip the dosage altogether, Naomi’s doctors have been administering half doses. Ideally, to fight the cancer, Naomi should be receiving full doses. The doctors have no idea why her ANC is so low. Please pray that her numbers elevate again.

Other than a low ANC, Naomi is doing quite well. She has been enjoying Hula and Karate lessons, and spending her days at home with her mother, Nina. Nina has been working with Naomi on a preschool curriculum for about an hour per day. The family is looking into programs which provide in home instruction for up to 2 hours per day with a professional instructor. There are programs on the city, county and state level that provide such services for sick children.

On a happy note, Naomi is so excited about her hair returning that she’s taken it upon herself to style her hair. Earlier this week, she poured 1/2 of a bottle of hair oil onto her hair, and just yesterday she followed it up with 1/2 of a bottle of hair gel. Maybe we have a future stylist in the family!

Here are photos of Naomi in Hula class:

New photo of Naomi

Isn't she beautiful?

Christmas for Naomi

Naomi had a beautiful Christmas. On Christmas Eve, Naomi, Jeremiah and their dad Jermaine went to a party with Jermaine's family. Naomi's mom, Nina was sick with the flu and stayed home. My mom and I (Nina's mother and sister) decided to stay in and help Nina prepare the house for the holiday. Once the kids returned home, Jermaine put on some music, and despite the late hour (nearly 11pm), but kids had enough energy to give us a dance performance. They had a great time, and so did we!

The kids slept late on Christmas morning. Jermaine made breakfast for everyone (pancakes, biscuits, eggs, sausage, bacon, hash browns, etc.), and we all filled our bellies, and expressed our gratitude to him for doing the work, and to God for allowing us to all be together on such a lovely day. We then moved on to the living room where the children opened gifts.

So far, it sounds like a typical American Christmas, no? Well, it was truly extraordinary because the fact that there were gifts at all is miraculous.

Upon Naomi's diagnosis, Nina had to quit her job and take on the role of Naomi's full time caretaker. Jermaine has been working hard as the sole breadwinner, but given the cost of living in Northern California, it's a challenge to run a household on a single income. NIna and Jermaine were faced with the fact that they just couldn't afford to buy gifts this Christmas.

The Alves family donated a beautiful Christmas tree. Johanna Alves ran in the NIke Women's Marathon on behalf of raising money for the Leukemia/Lymphoma society. Johanna ran and completed the marathon (kudos to Johanna) on behalf of Naomi. Read all about Johanna on the Team in Training web site: Johanna Alves. So, the familiy had a beautiful tree, but no gifts.

Enter a wonderful charitable organization, the Kelsi Austin Lowe Foundation. The goal of this foundation is to provide emotional and financial assistance to families with seriously ill children in the Central Valley of California. Thanks to generous donations from the Kelsi Austin Lowe Foundation, Naomi and Jeremiah were able to open an abundance of gifts, including toys, educational materials and clothing. The foundation also provided the family with some basic household needs. Thanks to the Kelsi Austin Lowe Foundation, the family's prayers were answered. Please visit the Kelsi Austin Lowe Foundation website, and read all about this wonderful organization, and the child it's named for: Kelsi Austin Lowe, a beautiful, heroic, and amazing child who died in 2002 from the same form of Leukemia that Naomi is fighting, Acute Lymphoblastic Leukemia. Kelsi's parents turned their devastating loss into an opportunity to provide aid, solace, and relief to parents and child enduring the challege of serious illnees. Please make a tax-deductible donation to this worthy cause.

Here are some photos of Naomi on Christmas Day. Enjoy!

I hope you all had a beautiful, warm, joyous Christmas, filled with love, kindness, happiness and good cheer!

Have a safe, fun and Happy New Year!

Naomi update

It's been a while since I've posted on Naomi's blog. Over the course of the past month, Naomi has continued to receive her chemotherapy treatments. She doesn't have to go to the hospital as often in this phase, but the drugs still take their toll on her physically and greatly affect her disposition. She is often very moody, prone to anger and frustration, all of which are certainly understandable. I can't begin to imagein what she has to deal with. She is such an amazing little girl, a wonder to see as she battles this disease.

Thank you for your continued prayers and support.

Merry Christmas!

Victoria

Cold Stone Creamery Fundraiser

The fundraiser was a great success! There was a steady stream of family, friends and strangers who came into the Emeryville Cold Stone Creamery location on October 21, 2006. The staff and management at Cold Stone were wonderfully gracious, energetic and supportive. We extend our gratitude to Dave, Ed, Tammy and all of the staff that worked the fundraiser.

Thank you to everyone who came and bought ice cream and shared your kindness, compassion and love with Naomi and the rest of the family. Special thanks to everyone who signed up for the Bone Marrow Registry. 30 new people are now on the list! As you can see from the photos, it was a beautiful day.

God bless you all!

Naomi's family

FUNDRAISER for NAOMI

FUNDRAISER for NAOMI
Sat, October 21, 2006 1-4pm

Cold Stone Creamery
5609 Bay Street
(across from Barnes & Noble)
Emeryville, CA 94608
510.428.9655

Cold Stone Creamery is donating 20% of sales during this fundraiser to Naomi's family! Please join us in this fundraiser for Naomi!

If you can't make it to the fundraiser, but would like to make a donation, please contact me for details: Victoria

Naomi needs glasses

Naomi's optomitrist confirmed today that she is very far sighted and suffers from astigmatism. She will need to wear glasses while awake in order to prevent further damage to her eyes. Fortunately, children with far sighted vision often recover partially or fully as they age. Please continue to pray for our little Naomi.

Naomi is beginning to experience severe hair loss as a result of the strong chemotherapy she is receiving. Please take the time to leave her positive comments, and if you see her, please remind her of how beautiful she truly is.

Thank you & God bless!

Update 9/21/06

We started week 2 (of 6 weeks) today. Naomi did very well. I started off this week with concerns about her PORT catheter. A friend of Jermaine's fell while holding Naomi on Sunday and knock her PORT out of alignment. I was very nervous, praying that she would not have to undergo another 3 hour surgery to have it adjusted. Thank God it was OK and she could still receive her Chemo through it.

I've included some photos from her chemo treatment so you can get a sense of what Naomi's experience is. As you can see, I always set Naomi up with a favorite Movie and make her as confortable as she can be. Today Naomi wanted to stay in her new stroller (a gift we received on Tuesday, 9/19/06).






























After the nurse starts the machine, we just wait for it to adminster all the chemo into her PORT, which is located on her chest. Naomi is so brave. She never cries anymore when the nurses access her PORT. There was a two year old boy in the room next door crying his eyes out as the nurse tried to access his PORT. Naomi walked over to his bed and held her shirt up so he could see her connection and the little boy stopped crying. Naomi is so sweet. The boy's father thanked Naomi for helping.

After chemo Naomi was in such high sprits that we went to the hospital play room where she completed this beautiful painting.
















Please come visit us! We are starting to get pretty bored here. Naomi's Chemo appointments are on Thursdays (for now) and the best days for visits are Tuesday and Wednesday. Yesterday we were delighted to have a visit from my aunt Debra.

Also please continue for strength in Naomi's organs. We are approching the dangerous week #4 where most children have a significant drop in health. The chemo may have to be stopped and there is potential that she may need to be hospitalized. We're praying that this will not be the case for us and she will sail right through to week 5 and 6 where chemo will be given everyday.

Bless God,
Nina

Naomi meets the 49ers!

On Sunday, 9/17/06, Naomi's family received tickets to see the 49ers play the St. Louis Rams. They had a great time, although Jeremiah found the cheerleaders more interesting (he's such a flirt already). Naomi slept during the game. LOL They all got the biggest thrill in meeting the players after the game here are some pictures from our exciting day.

Naomi, Jeremiah and Manny Lawson



















Naomi, Jeremiah and Tony Wragge















Naomi, Jeremiah and Justin Smiley















Naomi, Jeremiah and Bryant Young















Nina, Naomi, Jeremiah and Anthony Adams















Nina, Naomi, Jeremiah and Anthony Adams















Jeremiah flirts with Katherine (we think she's a cheerleader)















Naomi and Auntie Tiffany















Naomi and Grandma

Update 9/14/06

UPDATE: On Thursday, 9/14/06 Naomi began Delayed Intensification Maintenance. For this 56-day portion of Naomi's chemotherapy she and I will stay near the hospital at the recommendation of her doctors. Unfortunately, today we had a rough start. Naomi and I stayed up last night until 2:30am and woke this morning at 6:30am. The goal or purpose was to exhaust her so that she would sleep through her spinal tap procedure. Normally she would go to the APU where an anesthetist would put her to sleep, but they had open appointments and considering her hypoglycemia, we couldn't go on the waiting list (which requires fasting until an opening comes available. Hypoglycemic patients require food intake every 4-6 hours). Naomi fought me and the nurses during the spinal tap procedure and ended up with some bruses on her shoulder from the nurse trying to immobilize her. She is scheduled in the APU for the next spinal tap but if her ANC numbers drop again, she will have to forfet the appointment again, thereby leaving us faced with the option of putting her on the waiting list or trying to immobilize her again.

This phase is broken into a series of 3 weeks. Naomi will receive chemotherapy once per week, and will receive steroids for the first 21 days. Week 4 is for recovery from the intensity of the drugs but is also the most dangerous week, 90% of patients end up being hospitalized during this week as the body taken off the steroids and makes the necessary adjustments. If she is hospitalized, cheomthropy will stop untill she recovers. During weeks 5 and 6, Naomi will need to get chemotherapy at the hosiptal everyday. Finally, during weeks 7 and 8 she will be off all medication and be allowed to return home.

PRAISE REPORT: Naomi had an echocardiogram of her heart on Tuesday and the report came back as normal and healthly!!!

PRAYER REQUESTS: Please keep us lifted up in your prayers. The family separation we must endure is hard on all of us.

Until later, may the Lord bless you,

Nina

Camp Okizu

Naomi had a great Labor Day weekend! She, her brother and her parents went to Camp Okizu near Lake Oroville, CA. Here is Nina's account of the trip:

Camp Okizu was created by Larry Bell, who wanted to create a special place for children with cancer to go and experience camping. Mr. Bell took a $3.8 million loan and built a beautiful camp site on 500 acres of land. He pays for the $1.2 million in operating expenses per year to keep the camp going. Additionally, Mr. Bell does not charge any family to come to the camp. Mr Bell depends on donations and volunteers to act as counselors. On our weekend we had several Oncologists and Register Nurses available for medical assistance and to answer our questions.

We arrived on Friday and immediately started making friends. Jeremiah was taken off by a 5 year girl named Samantha, who was also the sibling of a Leukemia patient. Naomi made friend with two other Leukemia girls, both 3 years olds: Little Mimi and Ella (seen in the picture with Naomi).

Our days where full of activities. In the mornings, the parents met in support groups while the children where divided by age into small groups. Jermaine and I learned a lot about how to manage our sick child and our healthily child during Naomi's Chemotherapy.

After the sessions we had lunch/nap time. The afternoon was filled with a list of activities. On day one, we stayed in the craft room because it was too hot to be outside. On day two, Jeremiah and Jermaine went fishing and to archery while Naomi took a nap. After her nap, I made Ice Cream with a Red Ice Cream Ball that had to be shaken for 20 minutes. I tried rolling it on the ground to ease the pressure on my arms. That Ball got heavy!

After ice cream, we all went to the ropes course and got to fly through the trees. Naomi took two turns first with me, then with Jermaine. Jeremiah went twice by himself. On his 2nd trip through the trees, Jeremiah got daring and let go of the rope to fly more freely. After our flights Jeremiah and I climbed up some trees to reach a cat walk in the air. I made it across the first log, but Jeremiah gave up at about 20 feet above. We had fun dropping to the ground and swinging back and forth. After the ropes course, all four of us played flag football with other campers. Jermaine was on the opposite team as me and the kids, and he led his team to the first victory.

In the evening, we had smores on the first night and a party the second night during which the entire camp created a nice song by beating tubes. The party lasted until 10pm. During the party, we also played "Mafia" with 20 other campers. Jermaine and I where both "killed" early in the game. Our main purpose for going to camp Okizu was to check it out before we allowed Jeremiah to go to the Sibs Camp (camp for the siblings of cancer patients) on his own. Jeremiah is excited; he made a lot of friends and looks forward to going back.

For more information about Camp Okizu or to make a donation go to Camp Okizu

Photos of the trip:




The Cabins where the family stayed













Naomi having fun













Nina and Naomi making Ice Cream











Naomi eating home made Ice Cream











Naomi saying goodbye to her new friend, Ella