Save Barry Pham

The Barry Pham Special Event Series at LPCH on 12/14/2011

noreply@blogger.com (Barry Pham) — Mon, 19 Dec 2011 21:17:00 +0000

Thank you to Central Payment for sponsoring "A Holiday Penguin Party" at LPCH on Wednesday December 14, 2011.

The Barry Pham Special Event Series at LPCH on 10/31/2011

noreply@blogger.com (Barry Pham) — Fri, 11 Nov 2011 16:33:00 +0000

Thank you to Central Payment for sponsoring the Barry Pham Special Event Series at LPCH.

The Barry Pham Special Event Series at LPCH

noreply@blogger.com (Barry Pham) — Wed, 10 Nov 2010 20:03:00 +0000

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 - A Poem from a Father to His Son

noreply@blogger.com (Barry Pham) — Fri, 27 Aug 2010 20:51:00 +0000

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 - Cremation

noreply@blogger.com (Barry Pham) — Wed, 11 Aug 2010 01:10:00 +0000

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.

Memorial Service for Barry on Saturday Aug 7, 2010

noreply@blogger.com (Barry Pham) — Thu, 05 Aug 2010 23:05:00 +0000

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

noreply@blogger.com (Barry Pham) — Thu, 05 Aug 2010 08:19:00 +0000

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 - DNI and DNR

noreply@blogger.com (Barry Pham) — Thu, 05 Aug 2010 04:27:00 +0000

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 3rd, 2010 - Bone Marrow Biopsy

noreply@blogger.com (Barry Pham) — Tue, 03 Aug 2010 23:46:00 +0000

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 - Barry's Eye

noreply@blogger.com (Barry Pham) — Sat, 31 Jul 2010 06:08:00 +0000

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 - Gram-Positive Bacteria

noreply@blogger.com (Barry Pham) — Thu, 29 Jul 2010 16:14:00 +0000

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 - Clinic Visit and Hospital Stay

noreply@blogger.com (Barry Pham) — Wed, 28 Jul 2010 23:27:00 +0000

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

noreply@blogger.com (Barry Pham) — Wed, 28 Jul 2010 00:35:00 +0000

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.

July 25, 2010 - Barry's Current Chemotherapy

noreply@blogger.com (Barry Pham) — Mon, 26 Jul 2010 00:07:00 +0000

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 - Blood Work

noreply@blogger.com (Barry Pham) — Thu, 15 Jul 2010 00:00:00 +0000

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 - Update on MRD

noreply@blogger.com (Barry Pham) — Fri, 09 Jul 2010 20:14:00 +0000

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 - Bone Marrow Biopsy and Aspirate

noreply@blogger.com (Barry Pham) — Tue, 06 Jul 2010 18:49:00 +0000

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 - Update on Barry

noreply@blogger.com (Barry Pham) — Fri, 02 Jul 2010 18:36:00 +0000

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 - Blood Tests

noreply@blogger.com (Barry Pham) — Mon, 28 Jun 2010 22:27:00 +0000

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

June 23, 2010 - Platelet Transfusion Today

noreply@blogger.com (Barry Pham) — Thu, 24 Jun 2010 01:24:00 +0000

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.

June 12, 2010 - Returning Home

noreply@blogger.com (Barry Pham) — Sat, 12 Jun 2010 19:36:00 +0000

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.

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

noreply@blogger.com (Barry Pham) — Wed, 09 Jun 2010 15:29:00 +0000

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.

Update on Barry - June 3, 2010

noreply@blogger.com (Barry Pham) — Thu, 03 Jun 2010 14:15:00 +0000

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.

Thursday May 27, 2010 - Discharge from LPCH

noreply@blogger.com (Barry Pham) — Fri, 28 May 2010 18:00:00 +0000

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.

Sunday May 23, 2010 - Emergency Room

noreply@blogger.com (Barry Pham) — Mon, 24 May 2010 23:33:00 +0000

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.