Wednesday, November 10, 2010

The Barry Pham Special Event Series at LPCH

Here is a flyer for the Barry Pham Special Event Series sponsored by Central Payment. This "Trick or Treat Trail" was held on Friday, October 29th, 2010 from 1:00 to 2:30PM at Lucile Packard Children's Hospital at Stanford.

Friday, August 27, 2010

Friday August 27, 2010 - A Poem from a Father to His Son

My dearest son Barry
You are in the heavens and the stars
So close to our hearts
But yet so far
Fly high above like an angel
You now have your wings
No longer are you in pain
Now you can laugh and sing
Your mother and your father
We bid you well

When will we see you again?
Only time will tell

Tuesday, August 10, 2010

Tuesday August 10, 2010 - Cremation

Here is a photo of Barry that was taken on Tuesday July 27, 2010. In the photo, Barry seems to be smirking but he really has a bunch of Cheerios in his mouth. This was Barry's last photo that was taken while he was at home; the next day, we were admitted into Lucile Packard Children's Hospital.

Today, Tuesday August 10, 2010 at 2:30PM, Barry was cremated at the Chapel of the Hills in Los Gatos, CA.

We want to thank everyone who came to Barry's memorial service on Saturday August 7, 2010. I estimate that the attendance at the memorial service was about 300 people. So many toys were donated in Barry's memory and we took those toys to Lucille Packard Children's Hospital.

Thursday, August 5, 2010

Memorial Service for Barry on Saturday Aug 7, 2010

We are having a memorial service for Barry on Saturday August 7, 2010 from 9:00am to 2:00pm. Please feel free to come visit Barry anytime during this viewing period. There will also be a 30 minute prayer service that starts at 11:00am. The memorial service will be held at Campbell Memorial Chapel.

Date/Time: Saturday August 7, 2010

Campbell Memorial Chapel
231 E. Campbell Ave
Campbell, CA  95008
408-379-5010
map

P.S. Please don't wear all black attire.

Also, in lieu of sending flowers for Barry's memorial service, we request that you either
a) bring any new toy and it will be donated to Lucile Packard Children's Hospital or
b) make a charitable donation to Lucile Packard Children's Hospital at this weblink: https://www.supportlpch.org/SSLPage.aspx?pid=298

Thursday August 5, 2010 - Death of a Superhero

Barry Quinn Pham passed away at around 1:10am on Thursday August 5th, 2010 at Lucille Packard Children's Hospital after a long and valiant battle with leukemia. He was born on April 9, 2009 and he was barely 16 months old. RIP Barry Pham.

Wednesday, August 4, 2010

Wednesday August 4, 2010 - DNI and DNR

Today we signed DNI and DNR papers for Barry. His condition is deteriorating and we don't know how much time he has left.

Tuesday, August 3, 2010

Tuesday August 3rd, 2010 - Bone Marrow Biopsy

Preliminary results from today's bone marrow biopsy show that Barry's marrow is full of blasts and very few healthy cells. This is very bad news. His fevers persist and he is feeling very very uncomfortable. His recent CT scan on Sunday night showed lesions in his liver. Doctors are now treating this infection with a broad spectrum of antibiotics and anti-fungal medicine.

Here is a photo of Barry this morning. The photo shows Barry's right eye swelling. Last week it was the left eye that was swelling.

Friday, July 30, 2010

Friday July 30, 2010 - Barry's Eye

Here are two photos showing the condition of Barry's left eye. The photo on the top was taken on Friday morning and the photo on the bottom was taken on Friday evening. The photo on the top shows his left eye completely shut. From the photo on the bottom, you can see that the swelling on his left eye is decreasing and that his eye is opening up just a bit.

Thursday, July 29, 2010

Thursday July 29, 2010 - Gram-Positive Bacteria

Barry's blood culture results came back and he tested positive for Gram-positive bacteria. They are going to treat this with antibiotics so I am guessing we will be staying here at LPCH for at least 5 days. He also has a stye on the inside of his left eyelid and his left eye is swollen and completely shut.

Here are the results of today's CBC:
WBC: 3.0
Hemoglobin: 8.3
Platelet: 124
Neut, ABS: 0.7

Wednesday, July 28, 2010

Wednesday July 28, 2010 - Clinic Visit and Hospital Stay

We took Barry to the clinic today for our weekly blood work. His CBC showed that the platelet counts were 3 (normal people should be between 100 to 300) so we he had to get an infusion of platelets. The doctors also did a peripheral blood smear on Barry's blood and it showed some circulating blasts in the bloodstream. Circulating blasts are a concern but it is not an emergency or critical concern that changes the overall course of treatment for Barry. Near the end of our day hospital visit, Barry spiked a fever of over 101F. So they did a blood culture on him and now we have to stay at Lucille Packard Children's Hospital for 48 hours for observation. Barry has been having persistent fevers without symptoms for the past week so it could be due to the circulating blasts in his bloodstream. The doctors are going to give him some antibiotics and if the blood cultures are negative, hopefully we can leave the hospital on Friday.

Tuesday, July 27, 2010

Tuesday July 27, 2010

Here is a photo of Barry that was just taken today. Overall, he is doing fairly well. I was told last week that they have identified two cord bloods that are both a 4 out of 6 match. Although this is not the best match, it is good to know that we at least have a cord blood match that we can work with if no other better matches turn up. The earliest date that Barry can have his second bone marrow transplant is in October 2010.

Sunday, July 25, 2010

July 25, 2010 - Barry's Current Chemotherapy

About three weeks ago, the doctors started to give Barry a "light" course of chemotherapy to help with his recurring fevers. This is ALL-directed therapy and the chemotherapy drugs they are giving him are listed below. We get this chemotherapy once per week on an outpatient basis and this is currently our third week on this chemotherapy regimen.

Methotrexate
Vincristine
L-asparaginase

Wednesday, July 14, 2010

Wednesday July 14, 2010 - Blood Work

We went to LPCH today and here are Barry's lab results:

WBC: 3.6
Hemoglobin: 8.4
Platelet: 7
NEUT, ABS: 1.4

As you can see, Barry's platelets are very low at 7 (or 7000). He had to get a transfusion of platelets this morning after the results of the blood tests came in. He usually needs a transfusion of platelets once every 7 days. You can physically tell that he needs platelets when you can see the blood vessels in his eyes start to bleed.

Friday, July 9, 2010

Friday July 9, 2010 - Update on MRD

Barry had a bone marrow biopsy and aspirate that was done on Tuesday July 6, 2010. The results came back from St. Jude Children's Research Hospital and the MRD is at 24%. This is good because the previous bone marrow aspirate showed an MRD of 29.3%. So Barry's leukemia is decreasing without the use of any chemotherapy.

Tuesday, July 6, 2010

Tuesday July 6, 2010 - Bone Marrow Biopsy and Aspirate

Today Barry had a bone marrow biopsy and aspirate done at LPCH. We will know the results probably tomorrow. I will update the results as soon as I hear from the doctors.

Friday, July 2, 2010

Friday July 2, 2010 - Update on Barry

On Tuesday June 29, 2010 we took Barry to the emergency room at Stanford Hospital at around 9:30pm. He spiked a fever of over 101F so we called the on-call hemotologist/oncologist at LPCH and told her that we were coming. He stayed in the ER until about 2:00am when they transferred us to LPCH. They ran the usual battery of tests on him and gave him some antibiotics. We also did a foot x-ray on Barry and it was confirmed that he had a hairline fracture on his left foot. If everything goes according to plan, we should be leaving LPCH this afternoon of Friday July 2, 2010.

Monday, June 28, 2010

Monday June 28, 2010 - Blood Tests

This morning Barry had blood work done. He usually gets blood tests at least once per week. Here are the results of the blood tests this morning. The doctors figure that Barry can go about two more days before he needs a transfusion of platelets.

WBC - 4.7
Hemoglobin - 8.2
Platelet - 24
Neutrophils, Abs - 2.10

Wednesday, June 23, 2010

June 23, 2010 - Platelet Transfusion Today

On Wednesday June 23, 2010, Barry got a platelet transfusion. His platelet levels were down to 4 (or 4 x 10^9 per liter). Just to give you an idea, the normal platelet range is 150-400 x 10^9 per liter. Also, the results of Barry's bone marrow biopsy (third one after transplant) on June 9th showed that his MRD was at 29.3%. The MRD decreased from 29.7% (second biopsy after transplant) to 29.3% so this is okay. As long as Barry's leukemia doesn't grow, we can keep him off of chemotherapy so that he can get stronger. Then at the six month mark after transplant (October 2010), we can do another bone marrow transplant.

Saturday, June 12, 2010

June 12, 2010 - Returning Home

On Saturday June 12th, 2010 at noon, we brought Barry to home sweet home. We had been staying at the Ronald McDonald House since May 12th, 2010. Although the Ronald McDonald House is a convenient place to stay because it is so close to the hospital, there is no place like home.

Wednesday, June 9, 2010

June 9, 2010 - 3rd Bone Marrow Biopsy and Aspirate Since Transplant

Today, Wednesday June 9th, 2010, they are going to do a bone marrow biopsy and aspirate on Barry. This is his third bone marrow biopsy since transplant. They are going to check the MRD to see how many percent blasts Barry has in his bone marrow. If the blast percentage is decreasing then this would be good. We would like to see the blast percentage be less than the 27% of the second bone marrow biopsy. This would further confirm that the GvL is taking effect in his body. I will post the results of his bone marrow biopsy as soon as I know. The results should probably come back on Friday.

Thursday, June 3, 2010

Update on Barry - June 3, 2010

We are going to do another bone marrow biopsy and aspiration on Barry on Wednesday June 9, 2010. They are going to check his VNTR and MRD to see the trend. Previously, Barry had two bone marrow biopsies done on May 11th and May 21st. The May 11th bone marrow biopsy showed 41% blasts (not good) and a CD34+ engraftment of 9% (not good). The May 21st bone marrow biopsy showed 27% blasts (better) and a CD34+ engraftment of 93% (good). So I asked Dr. Ga***n and he said that they really don't know and can't explain exactly what is going on with Barry; that is a fair answer and I can accept that. The blast percentage going down from 41% to 27% is the graft vs leukemia effect; if this trend continues then this is good. It is also unclear how his engraftment of the CD34+ cells jumped from 9% to 93%. So we have two data points already and the bone marrow biopsy next week will give us a third data point.

Barry's cytogenetics test results also show a 7q- chromosomal abnormality. This means that he may already have or might be developing myelodysplastic syndrome. The cure for MDS is also a bone marrow transplant. So to sum it up, we will still need to do a second bone marrow transplant for Barry. Overall, he looks pretty healthy and if you saw him, you would not even know that he has cancer.

Friday, May 28, 2010

Thursday May 27, 2010 - Discharge from LPCH

On the afternoon of Thursday May 27, 2010, we were discharged from LPCH. We went right back to the Ronald McDonald House. Let's hope that Barry doesn't have any more unexpected fevers so that we don't have to go to the ER.

Monday, May 24, 2010

Sunday May 23, 2010 - Emergency Room

On Sunday evening around 6pm, we took Barry to the Emergency Room at Stanford Hospital. He spiked a fever of 101.8 F so we called the on-call hemotologist/oncologist to tell them that Barry was coming. It's a good thing that we are staying at the Ronald McDonald House because it only took us about 2 minutes to get to the ER.

Saturday, May 22, 2010

Friday May 21st, 2010 - Bone Marrow Biopsy and Aspirate

On Friday morning, the doctors did a bone marrow biopsy and aspirate on Barry. They are going to re-check for MRD (minimal residual disease) in Barry's bone marrow and they are going to run a VNTR (variable number tandem repeat) to see how much of donor marrow versus Barry's old marrow is present. I will update the results next week.

Monday, May 17, 2010

Monday May 17th, 2010 - Ambiguous Results

I am not a doctor but I will try to paraphrase exactly what Dr. Kh******a -- names have been omitted to protect other people's privacy -- told me today about Barry's bone marrow biopsy. She said that Barry's white blood cells show a 98% engraftment, which is good. But his bone marrow also shows 30% blasts.  These two results are contradictory and thus it makes his diagnosis really ambiguous. We are going to do a bone marrow biopsy and aspiration again next week and reevaluate the results.

Saturday, May 15, 2010

Saturday May 15th, 2010 - Platelet Transfusion

We are going to take Barry to the Short Stay Unit this morning to get a platelet transfusion. We will meet with the doctors again on Monday to plan a new course of chemotherapy to help Barry. We will have to wait and see the results of the flow cytometry to see what type(s) of cancer cells remain in Barry's bone marrow and this will direct the next course of chemotherapy.

Friday, May 14, 2010

Friday May 14, 2010 - Bad News

Today is Day +37 after transplant. There is not much to say today. Today we talked to Barry's doctors and they told us that there were 30% blasts in Barry's bone marrow. This is definitely bad news and the treatment options at this point are limited. The doctors said that they were very shocked and this is a very rare and unexpected occurrence. I will keep you updated as we continue this battle to save Barry's life.

Thursday, May 13, 2010

Wednesday May 12, 2010 Day +35 Update - Discharge

Barry was discharged from the hospital on Wednesday May 12, 2010 at around 6:00pm. Yay!!! The discharge date was +35 days after transplant so we are slightly ahead of schedule. Before the transplant, the doctors told us that the average stay after transplant would be 6 weeks to 2 months.  We went straight to Ronald McDonald House and got situated with our new temporary living arrangement. I want to thank all the nurses at LPCH who have taken care of Barry for their great care and support. Nurses, if you are reading this, please know that you are greatly appreciated.

Monday, May 10, 2010

Barry Day +33 Update

Today (Monday May 10th, 2010) is day +33 after transplant. Barry continues to do well. His white blood cells are good (3.1k), his hemoglobin is low (at around 8.0) and his platelets are okay (at 33k). The doctors try to hold out as long as possible before giving him an infusion of red blood cells. You can see that Barry looks a little bit pale in the photo above; this is due to his low hemoglobin level. Tomorrow morning, Barry will get a bone marrow biopsy and aspiration. The doctors will look to see the percentage of donor marrow versus the percentage of Barry's old marrow.

If all goes well, we should be discharged from LPCH on the afternoon of Wednesday May 12th, 2010 and we will head over to the Ronald McDonald House at Stanford.

Friday, May 7, 2010

Barry Day +30 Update

Today is day +30 after transplant (Friday 5/07/2010).  Barry continues to do well. His ultrasound on Thursday evening confirmed that his gallbladder no longer shows any signs of infection and his liver is back to normal. We are continuing to try to feed him food by mouth. If things continue as planned, we should be discharged from the hospital this coming Wednesday May 12th.

Thursday, May 6, 2010

Barry Day +29 Update - NG Tube

Today (May 6th, 2010)  is day +29 after transplant. Barry's TPN (Total Parenteral Nutrition) that was delivered intravenously was removed yesterday (May 5th, 2010) and an NG tube was placed into his nose and down his stomach. You can see him with his NG tube in the photo above. Because he has not had any food in his stomach for the last 3 weeks, his stomach has probably shrunk and the NG tube will help his stomach get reacquainted with food. After we get discharged from the hospital, we will be staying at the Ronald McDonald House at Stanford until 100 days post-transplant. This is so that we can be really close to the hospital just in case any complications in Barry's condition arise.

Wednesday, May 5, 2010

Barry Day +28 Update

Today is day +28 after transplant. Barry continues to do very well overall. His white blood cells and neutrophils continue to increase due to the G-CSF injections.  He still eats a very minimal amount by mouth.  Today the doctors are going to put an NG tube through his nose and down to his stomach.  This will help him get used to eating again.  Once Barry starts eating by mouth again, we can get ready to be discharged from the hospital.

Tuesday, May 4, 2010

Barry Day +27 Update

Today is day +27 after transplant.  Here is a picture of Barry this morning (Tuesday May 4th, 2010) while he is eating his favorite baby food, chicken and gravy.  Barry is slowly able to drink soy milk and eat chicken and gravy by mouth.  Meanwhile, he is still getting lipids and nutrients fed into his Hickman catheter.

Today's blood labs showed that the G-CSF helped boost his white blood cells tremendously.

WBC: 3.9
Neutrophils: 2.42

Monday, May 3, 2010

Barry Day +26 Update

Today is Day +26 after transplant. Barry's neutrophil counts dropped to 300 so everyone has to cover their face with a mask when they enter his room.  The doctors are going to give Barry some G-CSF to stimulate the production of his white blood cells.  Yesterday I mistakenly wrote that Barry was no longer getting lipids and nutrients from his Hickman catheter.  He is still feeding from his Hickman catheter but the plan is to slowly wean him off of the intravenous food.  One of the requirements for being discharged from the hospital is that he must be able to eat by mouth.  So far today, Barry has not eaten anything by mouth.

Sunday, May 2, 2010

Barry Day +25 Update - VOD Resolving

Today (Sunday 5/2/2010) is Barry's Day +25 after transplant.  His liver and stomach are shrinking and he is doing well. The veno-occlusive disease of the liver is resolving itself.  He is no longer feeding through his Hickman catheter; he is eating by mouth again.

Sunday, April 25, 2010

Barry Day +18 Update

Today (Sunday 4/25/2010) is Barry's Day +18 after transplant.  Here is a photo of Barry sleeping in Mom's arms at LPCH.  On Friday 4/23/2010 we were told that Barry's liver was not functioning correctly and he might be at risk of developing veno-occlusive disease of the liver.  Fortunately, today his blood work showed that his liver function is improving and trending in a positive direction.  His white blood cells are also increasing and today's labs showed it was at 2200.

Wednesday, April 21, 2010

Photo of Barry Sleeping on Tuesday April 20th, 2010

Here is a photo of Barry peacefully sleeping in Auntie My Linh's arm on the evening of Tuesday 4/20/2010.  His white blood cell count was 400 but it might bounce up and down for the next few days.  He is still feeding through his Hickman catheter.

Saturday, April 10, 2010

Barry's Stem Cell Transplant on Wed 04/07/2010


On Wednesday April 7th, 2010 at around 11:00 a.m., Barry got an infusion of stem cells.  The event was very anticlimactic.  As you can see from the pictures above, the stem cells look very similar to a bag of red blood cells.  The mean time to engraftment is about eighteen days so now we just have to wait until Day +18 to see where he is at with his engraftment.

Thursday, April 8, 2010

Haiku

The Transplant (a haiku)

No more blood cancer
My new cells will attack you
Low GVHD

Wednesday, March 31, 2010

Barry's Conditioning Chemotherapy

Barry has been in the hospital since Sunday March 28, 2010 (Day -9). He will get a lot of conditioning chemotherapy until April 4, 2010 (Day -2). He will then rest on Day -1 and not get any drugs on that day.  On April 6, 2010 (Day 0) he will get a bag of stem cells/cord blood infused into his body through his Hickman catheter.

Monday, March 22, 2010

Going to the Hospital On Sunday March 28th, 2010

We are going to be admitted into Lucille Packard Children's Hospital on Sunday March 28th, 2010.  This will be the beginning of Barry's conditioning regimen to prepare his immune system for the stem cell transplant.  He will be getting the standard Busulfan, Cyclophosphamide, and ATG conditioning regimen.

Tuesday, March 16, 2010

Save Barry T-Shirts

Here is a picture of the Team Barry T-Shirts that we designed.  The Shirt has a really high quality resolution picture of Barry on the front.  If you want a t-shirt, I am selling them for $15 to raise awareness about becoming a stem cell/bone marrow donor.  Note that the actual cost of the shirt is $15 and I am NOT making money off the sale of these shirts.

Tuesday, March 9, 2010

Ode to Barry

Ode to Barry

I am an infant and am quite strong
Weigh me heavy, measure me long
I drink formula and eat baby food
All so yummy, all so good
This sickness will not take me down
Always smiling without ever a frown
God will make me strong and healthy
I know this to be true, I can tell
My name is Barry, remember it well

Friday, February 26, 2010

Bone Marrow Drive this weekend in San Jose

There will be another bone marrow drive in San Jose this weekend. See information below for drive location and details.

Buddhist Churches of America, San Jose

DATE and TIME: 2010 February 28
LOCATION: 170 South Market St, San Jose CA 95113 (view map)
Starts: 8:00am
Ends: 1:00pm

Monday, February 15, 2010

Bone Marrow Drive at Grand Century Mall in San Jose on Sat 2/20/2010

We will be holding a bone marrow drive on Saturday February 20, 2010 at Grand Century Mall in San Jose. Please come out and register as a bone marrow donor if you have not done so.  There are so many patients of Asian heritage who need bone marrow donors and cannot find one, due to the shortage of Asians in the National Marrow Donor Program registry.

DATE and TIME: 2010 February 20, 10:00am-3:00pm
LOCATION: 1001 Story Rd, San Jose, CA 95112 (view map)

Sunday, February 7, 2010

Bone Marrow Drive at the Church of Saint Raphael Annex Hall on 2/14/2010 at 10:00am

There will be a Vietnamese New Year Tet Celebration on Sunday February 14, 2010 at the St. Raphael Church annex.  Join the Vietnamese Community to celebrate the Year of the Tiger.  Mass will be held at 9:00am in the church followed by festivities including delicious food, good company, fireworks and lion dancing!

We will be holding a bone marrow drive for Barry Pham at the church annex hall.  Please come out to register as a bone marrow donor if you have not done so.

http://www.saintraphael.com/
Where: 1104 Fifth Avenue, San Rafael, CA  94901
When: Sunday 2/14/2010 at 10:00am

Sunday, January 31, 2010

113 People Registered at the Bone Marrow Drive Today

Today we registered 113 people at the Villas at Lundy ClubHouse Bone Marrow Drive for Barry Pham.  I would like to thank James and Phuong for hosting the drive at their condo clubhouse.  I want to thank James from AADP for coming out to coordinate the event logistics.  And finally, I want to thank members of Team Matthew for coming out to help with this event.

Thursday, January 28, 2010

Bone Marrow Drive for Barry Pham on Feb 6, 2010 at Starbucks San Jose

AADP is holding a bone marrow drive for Barry on Saturday Feb 6, 2010 from 11:00am to 5:00pm at Starbucks in San Jose.  The Starbucks is located at the corner of Story and King at 1110 South King Road, San Jose, CA 95122.

Please take 10 minutes of your time to become a potential bone marrow donor for Barry and others who are in need of a bone marrow transplant.

Time/Date: 11:00am to 5:00pm on Saturday Feb 6, 2010
Location: Starbucks San Jose, 1110 South King Rd, San Jose, CA 95122 (view map)

Wednesday, January 20, 2010

Bone Marrow Drive for Barry Pham on Jan 31, 2010


We are hosting a Bone Marrow Drive at the Villas at Lundy Clubhouse on 1/31/10 in honor of Barry Pham. Please come help save Barry's life. Barry is only 9 months old and is diagnosed with acute biphenotypic leukemia. Please take 10 minutes of your time to register as a potential donor or forward this to your friends. You will NOT be donating blood; all you need to do is just fill out a form and do a cheek swab.

LIGHT REFRESHMENTS WILL BE PROVIDED & THERE IS A POOL + PUBLIC PARK ONSITE SO BRING YOUR ENTIRE FAMILY!

Here is a link to the map of the location:
http://maps.google.com/maps?q=1300%20Marcello%20Dr%20San%20Jose%20CA%2095131

DIRECTIONS
Address: Corner of Marcello Dr. and Plaza Sol. Note: there is no address for the clubhouse but if you are using GPS or Google maps, use 1300 Marcello Dr, San Jose, CA 95131.

FROM DOWNTOWN SAN JOSE/880 NORTH:
Exit Brokaw Rd, Turn right on E. Brokaw Rd. E. Brokaw Road becomes Murphy Ave, Turn left onto Ringwood Ave, Turn Right on Mckay Drive. Turn Right on Avenida Elisa. Turn left on Avenida Benito (or Marcello Dr).
The clubhouse is at the end of Avenida Benito (or Marcello Dr).

FROM 880 SOUTH:
Exit Brokaw Rd, Turn left on E. Brokaw Rd. E. Brokaw Road becomes Murphy Ave, Turn left onto Ringwood Ave, Turn right on McKay Drive. Turn right on Avenida Elisa. Turn left on Avenida Benito (or Marcello Dr).
The clubhouse is at the end of Avenida Benito (or Marcello Dr).