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.